Written and performed by Cameron Marshall Harris.

Cam wrote “Take Me Home” when he was 19. I discovered that he had secretly recorded this song on 19/07/11 – exactly one month before he passed away.

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Ash & Harris Family

I adore you and love you deeply my sweet, beautiful, darling husband. Your Christlike love, joy and tender care has flooded my life for the past year and will continue to do so forever.

We will inform everyone about funeral details shortly.

With much love and appreciation,

Ash

Cam has been sedated for four days now. We didn’t think he’d make it through Tuesday. We all said our “see you soon” goodbyes and went home late that night. We thought perhaps he was waiting for us to go so he could let go. Our darling Cameron certainly has a strong heartin more ways than one. He’s still hanging on, still sedated and is sleeping peacefully now. Midazolam was one of his favourite drugs so hopefully he’s happy with the doctor’s choice of sedative.

Dr Davray explained that because he’s young, he can hold on for longer but it’s only a matter of time – maybe hours or days. All they can do is make him as comfortable as possible by giving him a constant supply of  sedatives and pain relief through a syringe driver.

Cam has had a couple of lovely days of visits from extended family and close friends. He would have absolutely loved and treasured that time dearly. We’ve shared time with Cam playing his favourite music, talking to him, reminiscing and laughing. With Dr Davray’s suggestion, Cam’s family and I have agreed that visits will now be limited to immediate family only so as to reduce stimulation for Cam and maintain a peaceful environment in his room. We all know how he loves a good chat and would hang around just to give his time to those who love him.

Despite all indications pointing to death, I still have hope for a healing miracle, if for no other reason but because I have to believe that God’s power is greater than we can understand and I don’t want to limit His power within my limited understanding. But whatever the outcome, I just want my beautiful husband, our friend, brother and son, to be set free from the torment of this disease and to finally be at peace.

I know Cam feels blessed and overwhelmed by all your prayers, love and kindness and he always takes the time to make sure you all know it.  I want to add to that and say your prayers are also carrying me through this, in a time when all I can pray is “please God”. So with all of my heart, thank you.

I won’t write another blog now until Cam is healed or taken, or unless his condition changes in another way.

God bless.

Ash

This morning the infectious diseases doctor confirmed that last week’s tests show there is no infection in Cam’s body.  Although we recognise this is great news, unfortunately Cam’s condition is worsening.

Two days ago he started to get twitching and weakness in his hands and arms, which is also worsening.  Cam has been struggling with the frustration of this more than the pain because he can’t hold or type anything.  The simplest tasks are causing great frustration and distress.  His clarity of mind has been rapidly declining over the last few days and communicating with him is becoming increasingly difficult.  He is also experiencing illusions.  They’re not frightening or disconcerting illusions, but it was enough for the palliative care doctor, Dr Davray, to call in a neurologist.  The neurologist put it all down to drugs and toxins from the cancer running through is body and scrambling his brain.  He said the brain is seeing things that are there but it is misinterpreting it causing the illusions.

The recent blood test results also show that his liver is not doing so well.  Dr Davray said it was a bit off when he first came in a week ago but it has since declined.  She said they will to do blood tests to monitor it.

I have a bed set up in the hospital room with Cam and I’ve been sleeping here overnight for a week.  The bed is not the most comfortable but my comfort is in knowing that I can be by Cam’s side at all times.  Any movement is painful, difficult and exhausting for him now.  Sleep is the only rest he gets from the twitching and confusion. I’ve been playing an audio bible to him, hoping it will bring some comfort.

We were able to get leave out of hospital last night to go to Riverview church, with the aid of a wheelchair.  We were hoping to get out this afternoon to go to The Mission Church but I don’t think that will be a possibility today.

I believe God is our Healer.  I still believe Cam can be healed.  I still believe God is faithful.  Whether Cam is healed or if he dies, we both take comfort in knowing the promises of God, knowing our eternal inheritance through Christ and knowing that either way, Cam will have a new body.  Cam believes God is with him and he believes He loves him and knows what’s best for him.  Although I don’t understand why Cam is suffering this way, I’m thankful to God for so many things.  Thankful for the care that Cam is getting, thankful that I’m here with Cam and that he is not alone, thankful for Cam’s incredible love for me, thankful that we were able to get married, have a beautiful wedding and celebrate with so many wonderful people and above all I’m thankful that God gave me a life-long blessing in Cam.

…………………………………

I wrote the above this morning and since then, Cam’s condition has continued to decline significantly.  We didn’t see Dr Davray today as it was her day off, but by 5pm, Cam’s responsiveness and disorientation was getting worse, I asked the nurse to call Dr Davray to let her know.  The doctor asked to speak to me on the phone and I knew what she was going to say.  His liver is failing.  There are toxins running wild in his body causing the disorientation.  Dr Davray then told me what I knew I didn’t want to hear, that Cam has only days left.  After I told Cam what the doctor told me, I said to him my money is still on God’s healing.

Cam and I and his family thank everyone for their love and support.  We know you will appreciate that this time is incredibly difficult and we thank you for understanding that this time with Cam will be spent with family.

I will be taking a back seat for a little while from writing for now as my eyesight has depleted to where it is quite difficult to type with double vision.  In the meantime, Ash’s editing skills will be on high alert.

I will continue, however, to take credit for any humour that appears in the text, unless otherwise stated.  I will now hand over to Ash to fill in the detail of what has been going on and the plan from this stage.

A continuous thank you for all your support, love and prayers for us.

Go the Eagles!  (Yes, things are worse than we first thought).

Over to Ash

CMH

This blogging thing is new to me so I’ll do my best to fill you in with as much detail as possible and I’ll try not to bore you.  Updating the blog makes it easier for both of us to keep everyone informed without having to repeat ourselves too often.  Firstly, thank you to everyone who has sent text messages and emails.  We apologise to those we have not been able to reply.  Please know that your love and support is definitely needed and deeply appreciated, even if we don’t reply.  To know that so many people are praying for Cam and I and sending loving thoughts is held dear to our hearts more than you will know.

We had a really lovely time away in Margaret River.  The villa we stayed in was cosy and warm and tended to our every need with an eco fireplace by the lounge and a jacuzzi on the deck overlooking one of the lakes.  Surrounded by 66 acres of trees, lakes and grassy paddocks, we had no phone reception and it was just what we needed to get away and have some time out from ringing phones, hospital noises and doctors appointments.  Cam was feeling quite upbeat and reasonably well for the first few days.  We were able to go out for lunch and dinner most days and spend some time out and about exploring wineries, the Calgardup Cave and of course the Fudge Factory (that one may have been my influence).

On Thursday night, Cam started to comment about having double vision double vision (stole your joke Carms… thanks!).  I had noticed his left eye was puffy for about a week by then and wasn’t getting better.  The next day, the double vision still remained and Cam slept all day as he felt very run down.  The double vision was causing nausea and headaches.  My heart dropped when Cam said to me, “I feel like my body is shutting down.”  Not the words anyone wants to hear their husband speak.  By this stage, it was too late to leave Margaret River and head home so we decided we’d drive home first thing Saturday morning and arrange for the Silverchain Hospice nurse to meet us at home that afternoon.  The nurse came and completed all the initial consult paperwork and when she did the usual checks over Cam, she found a temperature of 38.5.  Cam didn’t feel feverish so it came as quite a surprise.  The nurse called the doctor and they were both concerned and agreed that it was necessary to get Cam admitted into hospital so she arranged for a bed in Hollywood immediately.

The last few days have been spent between doctors and tests to work out what’s causing the double vision and temperatures.  He’s had blood tests and blood cultures taken, an x-ray and two CT scans.  The double vision is being caused by a small tumour behind his eye in the orbit which is putting pressure on his left eye.  Once the doctors work out what’s causing the temperatures, they can decide whether radiation is an option to blitz the nodule in the orbit.  In the meantime, Cam’s adopted a new pirate personality, complete with eye patch and all.  The eye patch (creatively created by Rach) helps him to see one of everything through his right eye.  But I think, who wouldn’t want to have two of me around??  Cam should feel doubly blessed to have two wives take care of him!

As for the temperatures, the doctors say it’s being caused by one of two things.  It’s either the myeloma itself, affecting his central nervous system.  The CT scan of his brain has shown a few extra lesions on the skull.  They said they can’t see it in his brain but unfortunately that doesn’t mean it’s not there.  The other possibility is that he has caught some sort of fungal infection.  It takes quite a few days to test for this so although they’ve taken blood cultures earlier in the week, it still hasn’t been confirmed.  The doctor informed us that the easiest way to test for fungal infection is to do a lumbar puncture, but understandably, Cam doesn’t want to have that done.  So the next best thing, is to take a biopsy of the lesion on his chest to test for infection, which is being done today.  It will then take another 2-3 days for this to be tested and confirmed if an infection is present or not.

Just have to sit tight until then and keep Cam functioning with prayers, as well as fentanyl patches and hydromorphone for pain relief combined with coloxyl, movicol and lactulose to counteract the constipating side-effects of the pain drugs; dexamethasone to reduce the swelling in the tumours which also perks him up, temazepam to counteract the dexamethasone so that he can sleep at night; combined with a cocktail of other drugs to help with one function and then more drugs to counteract the side-effects of the other drugs.  I honestly don’t know how his body copes.  His body is like a walking pharmacy at the moment.  So heartbreaking to watch.  And I can see it’s taken its toll on him emotionally.  The poking, prodding, needles and answering the same questions over and over is beyond exhausting.  How many times can one be asked “have you opened your bowels today?” before you crack?  I can’t help much, but I do my best to answer what I can for him, take any load off him that I possibly can, just be there and do whatever I can to make life a little easier during this most difficult time.  It’s so hard to not be able to do any more than that.  I don’t even know how to pray now.  All I have left is let Your will be done.

Mrs Ash Harris (love writing that!)

That is it for now, I can hardly type a sentence without using the delete button 14 times. Thank you for everyone’s support. Ash has been here all day whether I sleep or wake – I have been spoilt.

Ash and I had a chat with him after the service and he was so excited for us and encouraged us to keep believing, praying, and thanking God that Healing has already taken place – and this is the constant message that we have been hanging onto for quite some time now.  I continue to get distressed when I see the physical manifestation of the cancer in my body.  The tumour is now considered large by medical statistics, yet we believe that the promises of God state that healing has taken place.  I could not do this without Ash or the belief of my family and church, as it is so discouraging at times.

The truth is, Thursday night I was on life saving morphine, had a collapsed lung and couldn’t breathe much more than to say “call the ambulance”.  I filled out my will, had discussions with my family to say goodbyes etc. etc. etc.  The next day I could breathe without discomfort at all, most of my pain had gone.  Whatever your thoughts, I know that a big change has taken place.

So much so that the hospital folk said yesterday that I could leave for the afternoon, and will probably out by Wednesday completely.  We are just going to wait on the report from the X-ray that they took this morning to make sure there is no significant danger that it would happen again.

Dr Brad popped in tonight just to say hi – what a man!  It is not even his main hospital.  I was so honoured that he was able to make it to our wedding so I hit him with a man-hug and showed him the wedding pics.  He was married at the same church back in the mid 90’s so he was stoked to be back again.  We just had a good time.  I admire that guy so much.

So after our chat with James last night, we feel like we are back on track for complete healing.  Ash is feeling a bit run-down from all that has been going on, but she is a total inspiration to me, one that has taught me so much about the power of God’s word in a very short amount of time.  I am flabbergasted, and I believe more and more that there are great things to come.  One of the elders at the church is coordinating some fasting and praying for us, and we believe that there is power in this, so bring it on – so thankful.

I don’t know when to shut up about all this, but I know that it is not now.  We have renewed the car registrations for 12 months instead of 6 months, we have kept our booking for a honeymoon, and we are planning to share our stories with our grandkids.  I have lost count of how many death-beds I have lay in, lost count of how many palliative care units I have walked out of with a smile on my face, and lost count of how many hospital gowns I have (partially) worn that elderly ladies have got their much needed kicks from.  But who’s counting – I do what I can – my service to humanity.

The whole point of our experience for us is that if God’s promises are not worth anything at a time like this, then they are not worth much at all.  As far as I am concerned, enough of God’s promises have come good thus far, so I am one convinced believer, I just believe there is more to come also.

Psalm 143

1 Hear my prayer, O Lord ;
listen to my plea!
Answer me because you are faithful and righteous.

2 Don’t put your servant on trial,
for no one is innocent before you.

3 My enemy has chased me.
He has knocked me to the ground
and forces me to live in darkness like those in the grave.

4 I am losing all hope;
I am paralyzed with fear.

5 I remember the days of old.
I ponder all your great works
and think about what you have done.

6 I lift my hands to you in prayer.
I thirst for you as parched land thirsts for rain. 

7 Come quickly, Lord , and answer me,
for my depression deepens.
 Don’t turn away from me,
or I will die.

8 Let me hear of your unfailing love each morning,
for I am trusting you.
 Show me where to walk,
for I give myself to you.

9 Rescue me from my enemies, Lord ;
I run to you to hide me.

10 Teach me to do your will,
for you are my God.
 May your gracious Spirit lead me forward
on a firm footing.

11 For the glory of your name, O Lord , preserve my life.
 Because of your faithfulness, bring me out of this distress.

12 In your unfailing love, silence all my enemies
and destroy all my foes,
 for I am your servant.

The doctor I was meant to see was a new doctor and, because he didn’t know my history, Dr Brad took me straight in and spent a good chunk of time with me. We had a good chat, and Dr Brad is always straight down the line with me.

As some of the results were in, we checked them out. All organs are functioning really well, aside from kidneys that are a little high. My creatinine level about a month ago was 90 μmol/L (normally around 60 μmol/L) and the trend indicated it was increasing which is not good. The kidneys usually take the hardest knock with MM, overloading them with toxins as well as keeping up with the body’s normal detox needs. My creatinine levels got to over 200 after my stem-cell transplant ordeal. I do not know what they are after my blood test yesterday, but I should find out over the next few days.

Dr Brad talked to me about my decision to not take on further treatment. I explained to him that I didn’t want to risk getting sick with chemo, risking a hastening of fatal illness or spending my last months with no quality of life ( I remember enough about my stem-cell transplant to not go through that again). He understood.

I asked Dr Brad what the progression from this point would be. Usually, the kidneys would fail due to toxins overloading, then the body would begin to shut down and basically fall asleep. I was thankful that the process was so simple and it sounded painless. I asked what kind of timeframe he would expect this to take place. It would of course depend on what results come through over the next couple of days but he said a realistic expectation would be between two weeks and a couple of months.

I didn’t flinch as this wasn’t anything drastically different from what I was expecting, and it is not the reality I adhere to anyway. What Dr Brad said was completely understandable and appreciated from his vast experience and knowledge of the disease, but it is far from what I have my hope in, so it changed absolutely nothing for me.

I didn’t feel worried walking into the hospital, didn’t feel at all surprised during our chat, and didn’t feel at all fearful about the future when I was walking out. I say this because I know what I used to be like. I struggled to hold things together when I had been told similar news – and that was when we had treatment options! Not there is nothing, and I feel completely and utterly confident and peaceful. This is definitely the peace that flips logic on its head – the peace that God promises believers. I have it in truckloads – there is no other explanation for it. Some people have a peace that comes through resignation. Well, I haven’t resigned – quite the opposite – we are just cranking up our battle-cry a notch or two.

The peace that I feel is not from denial either. I know I have seen enough friends die from the same or similar diseases to understand what is denial and what is not. I know the risks, stats and progression of this disease enough to understand what it is capable of. I also have a growing understanding of God’s unlimited healing power and that provides way more in hope than a limited medical solution. I will be forever thankful for the medical staff and resources that have helped me get to this point.

It is quite unbelievable to think that a prognosis of 2+ weeks would be given to someone who looks quite well, can run and skip around (a little limited mind you:) , and has a furious determination to be married in two weeks! Apart from being a rather large inconvenience, I really don’t have the time to die!

We pray quite specifically at the moment that the tumor in my back will disappear, break down, vacate, take leave, desist, expire, become an ex-tumor. I will write about this process another time, as I am again beginning to come under the wise counsel of endone who tells me I should get some rest. That is the first time I have heard a narcotic say something responsible. I usually hear, “You wanna piece of me?”

It was a spontaneous decision to come up to York tonight with Ma and Pa, but they just got home today so decided to pick up some things from here and spend some time.

The weekend was tiring, but really interesting. Ash and I caught up with sister Carms Saturday morning, but I had some acute pain becoming more and more of a problem. The pain was in my back, right where the tumour seems to be. The tumour pain was significantly greater than I have had before, so much so that I knew we had to go to the emergency department for pain management. I had very few drugs at home for pain, and I knew I couldn’t last until tomorrow (Tuesday) for pain relief.

After having a thorough checkover, they let me go with scripts for high doses again. Not happy that I am back on the oxycontin, but happy that the pain is managed. It is definitely the oxycontin that makes my body sore when it is needing more, like when I get up in the morning. If you are on oxys, and you feel you can’t come off because of body pain – it is the oxys that cause the body ache – get off them!

I am finding it difficult to write as I don’t have a clear mind at the moment. But we plod along…

We had prayer over Skype from a guy at the Healing Rooms in Bethel Church in Redding CA. Very encouraging and we are seeing positive results through prayer here, there, everywhere.

I can’t keep my eyes open. Will wrap this up. I don’t feel afraid at all. I don’t feel worried at all. I just retain this awesome sense of excitement, and I know it isn’t the meds. What a wonderful life I have!

I thought of similar words tonight as I took a shower, and for the first time actually looked at my back in the mirror. I have mentioned my difficulties of sleeping on my back due to the pain on the left hand side, and now I see why.

I guess I wasn’t ready to see the bump. I have felt it with my hands before, but to see it took me by surprise. I won’t put any photos up now because it won’t do anyone any good. I will put them up once they have gone – then we can do the obligatory ‘before’ and ‘after’ shots. I have to say, these ‘before’ shots suck. I remember the day when all I had to do was pout and love the camera.

Last night, I came back from having prayer at the Healing Rooms and I was feeling absolutely invincible – I had no doubt I was going to be fine. I was there again today and I was feeling a little down, again, the pain and the long-haul getting to me. I still came away encouraged.

Andrea and Brendan are the main two who have sacrificed a huge amount of time praying for me at the prayer rooms, then they go home and pray for me and others. Then they rock up the next day and pray for me again for hours on end. They have inspired me incredibly with how they pray, and they know we are at critical point here now, so they have been incredibly generous and persistent with their commitment.

Tonight, I am not sure where I am. They will be prayers of exhaustion tonight. I am tempted to run with the “Whatever” version of prayer. I know I believe completely in God’s power for healing. Although my faith has taken a beating over the years, it is stronger than ever at this point in time. It is back to trusting God now regardless of what I see in the mirror, feel in my back, doubt in my logic.

I will continue to declare God’s goodness to me – this is not negotiable and I only need to introduce onlookers to my family and friends to leave them with no trace of doubt also. I am well looked after. Ash continues to inspire me and encourage me when I have no courage of my own. I am in the perfect setting to be restored.

My GP, Dr Simon, is a brilliant Doctor, and I have been very fortunate to have him oversee my treatment and sort out all the various areas of health over the years. It was Dr Simon who, four years ago almost, had me walk into his office and declare that I needed to see a doctor who specialised in ‘this’!” as I pointed to the big ol’ bump on my sternum. He got the ball rolling anyway, and has been fantastic ever since. Dr Simon called me into the surgery this morning to sort out my pain issues. So now I am back on patches, endone, and sleeping tablets.

This is the point where, supposedly, things are supposed to get difficult, I suppose. Well, I can vouch for that supposition, as I can’t remember doing anything easily for quite some time. This circumstance certainly is wearing on mind and body.

Although it would be easy to put across an impression that I am handling this time well, I want to acknowledge that it has been far more difficult that I could ever express, and I find myself crumbling again, confused about what to do next, mourning the time it seems I will lose with family and friends, mourning the loss of the things I didn’t get to do or experience, constantly fighting feelings of regret and disappointment. These feelings exist even in the midst of trying to stay positive. I have a huge amount of hope for a future and believe that healing is possible, but I still can’t stop crying each time I say goodbye to my nieces and nephews after spending the morning with them. I have so much to lose, and it is that ‘so much’ that I am becoming more and more thankful for.

I feel I am completely in the middle of the tug-o-war between what I have my faith in, and the direction that my body is going. I know the fear is looming that the next time I am forced to go to the hospital it most likely will be the one-way trip. The tumours are growing as rapidly as they did last time and I ended up in hospital for the week and then back on chemo. This time, there is no treatment planned. Although this fear is looming, I don’t feel it at this point. I feel sad for the emotions that run through me and others at this time, but I grin because I know there is hope, and that is enough for now.

I am having prayer at the healing rooms in Perth. The people there have been amazing, praying with incredible faith and authority, and putting in every minute they can for me. We have been thorough and persistent in praying. I feel that a lot has been accomplished through such prayer. Prayer has never been the last ditch effort in this journey – it has always been the first and continuous element in the last four years. But now I guess it has even more significance, in that before prayer was being answered in conjunction with what was going on medically. I have seen a lot of answered prayers through what medicine has done in my treatment. Now, there is no medical treatment, so whatever happens now is without medical intervention.

I am thankful for what medicine has given me over the years (well, mostly I suppose), but I am also thankful that it is over. I cannot imagine how many times I have been stuck, scanned, tested or whatever. I have been happy to sign my body in at the door and let medics have their way with me. I would like to say I have checked out mentally, but unfortunately I have been cognitively trying to process every painful aspect that my body has had to go through over these four years.

It has its upsides. I love a good MRI. I love the way you can just zone out while magnetic waves vibrate through your entire body. Its what I do for kicks. And boy oh boy do I love some of the drugs. One of these last times I was admitted with severe withdraws from oxycontin. My body was cramping uncontrollably and I was an emotional wreck. To go from a state of complete discomfort and writhing around on a bed in physical and mental torment to be completely at peace with a rather large dose of morphine – I will be eternally grateful for whoever invented such drugs.

Now, I accept that it is totally up to God how things go from here, and this excites me, seriously. I no longer have to make decisions about treatment options, as there are no options that I would consider – that is clear. All I can do is trust that God leads me down the path where I can be released from the grip of this hideous disease. I hate it. There is nothing at all right about it. Grotesque.

In this, I feel I am in the best hands I could hope for. I have relentless faith and encouragement in Ash, an amazing family, friends I cannot begin to describe, an incredible medical team at Charlies, and a God who is about to demonstrate something glorious, again, and again. Don’t read between the lines and interpret this as a ‘signing off’ – on the contrary. I consider the writings on The Walk Beside as a prelude to something ahead that is triumphant. Not any of my triumph, but of what God is able to do with something that is this broken. He has already done miracles in my spirit, as well as many physical miracles that I cannot deny. I am called to believe that the best is yet to come – and I do.

There is no disclaimer here, but if this carcass falls to the ground, I don’t want anyone to think or say ‘Well, he got the ultimate healing – no more suffering now’. No, this is not good enough, and it is not healing – it is being deceased, no more, kicked the bucket, passed a ‘use by’ date, carked it… dead. This is not healing, it is the hideously devastating consequence of sin in this world, and it should be hated for every right reason – it steals, kills, destroys. It is worthy of our hate, our anger, our disgust and our every effort to come against it in Jesus name.

So now I am learning to surrender this disease to Christ who did everything necessary to take the power out of death – that has been done. There is nothing to ‘fight’ other than principalities and powers. That is where this battle lies. It won’t be long now before we see a conclusion of sorts to this preface. The fact that there is a definite time frame in place now for some sort of resolution excites me to no end. There is, of course, the overwhelming threat of loss from time to time, but I have not felt it much recently – just more a sense of anticipation.

I do not want to paint a picture of everything being peaceful, happy, certain and easy, because it is far from it. Imagine being in a washing machine, and you know the cycle is just about to end, but you know there is the spin cycle coming up and it is the most intense part. I know this cycle coming up is going to be my most intense ever.

I imagine my body being pain free, and that is enough to get me excited. I know it is possible – I just want it now. No, really…right now.

I feel like I should be documenting a more realistic account of what is going on, and I am sure many people could relate to situations that they have been through that have been a challenge. For me, again the biggest battle rages in my mind and spirit – distracted only for a time by what is going on in my body.

What I have shared recently is all true. There is still an excitement that is floating around that is fuelled by the unknown and the possibility I will experience complete healing. I still haven’t broken down yet in uncontrollable ugly-face snotty weeping. I get through most conversations without so much as a glassy-eyed, quivering-lip kind of look – easily covered for with sunglasses and the fact that it is cold outside. I have become quite matter-of-fact about what is happening at the moment. I think I may have grown up. About time.

I was explaining today to a friend that it would seem that my body and spirit are heading in two totally different directions. My spirit pursues life, responds to joy, encourages my mind to make decisions for living and has hope. My body has set a different course. It has its mind made up, and all too often it sways my own mind to join it in its thinking. It is such a despicable conflict.

For every bit of positivity I have presented, there has been a fair share of ‘it will be all over in a few months anyway’ , ‘God, are you actually going to do anything?’ , ‘I may as well check myself into the hospital soon’ , ‘better start saying goodbyes’, ‘better record those tunes that have been in my head for 15 years’ , ‘who shall I leave my fake Stevie Ray Vaughan guitar to?’. Even being completely positive and full of hope, again I find I must make practical decisions to prepare for the worst.

I feel I have let go of my striving to achieve stuff before a certain time. This has come more so recently as I have not had the physical capacity to get most things done. This last week has been as much of a relief as it has been disappointing as I have given my workplaces notice I will not be available for next semester. This is a big thing as my capacity to work has been my way of going against my body’s decision to self-destruct.

I don’t want to live the rest of my life with regret about what I didn’t get done. I think a right response is to feel a hate for what sin consumes in its quest to kill, steal and destroy. I hate what it has stolen from me now, and I hate what it threatens me with for the future. I hate what it does to others. I hate it passionately, and feel it is right to go against it at every opportunity. But boy oh boy it is so difficult.

It is difficult to see what God is thinking in all of this. I believe He wants to heal me, and has paid a bloody price for my healing – that has already been done. So I am left wondering why it hasn’t happened yet, or if that healing will happen to me. Sometimes people do get healed, sometimes they don’t. I don’t know why. I feel I have enough faith, but maybe I just think I do.

I have spent most of my life thinking I have to be very careful because if I disappointed God, He would withdraw from me and it would be difficult to recover. It is hard not to go back to that thinking. Sometimes I feel that God is not listening to me because of whatever sin in my life, so I rack my brains trying to dig up sin that may have not been dealt with properly. It is difficult to go through this process without thinking that God is primarily an emotionally-challenged judge.

I am desperately filling my mind up with truth about who God is, just in case that helps change my situation. It can’t hurt! I have spent 4 years searching for reasons why I haven’t been healed. The amount of self-condemnation that accompanies this thinking has been overwhelming, not to mention the condemnation that has been donated. I think this thinking has been one of the most harmful. There must be a better way.

Well, I don’t want to be someone who dies early and leaves people confused about what went wrong. I mean, I still don’t know why things haven’t got better. I know many have their theories, and unfortunately the ones I am most familiar with involve God being disappointed with me for a myriad of reasons, so he holds back his gift of healing. So many people came to Jesus in the Bible, asking to be healed. Some begged. Some didn’t even ask. Jesus healed them all. I can’t find any occasion when he is just about to heal someone when he stops, points out to them that the religious-law-police had seen them texting on their phone whilst driving (lets ramp it up and assume it was on the Sabbath, on the way to watch Harry Potter, listening to Meatloaf), so he withdraws his decision to heal them. Maybe I just haven’t read that chapter, or maybe there were an unusual number of sinless sick Christian people needing miracles back in the old days. Either that or he was conditionally compassionate.

My hope rests on what God can do between now, and later, and that would be immeasurably more than all I ask or imagine, according to his power that is at work within me.

Mixed reactions to the news on the weekend. Mostly because I explained to people that the Doctors had allowed me to come off chemo. Faces would light up, thinking that I was now in the clear. I still get excited by that news though, so I want others to see the positive side of it too. My body never has to have chemo again. I am thankful for the time it has bought me, but I am so glad it is not a part of my future. I am not sure where my levels are at the moment as we haven’t tested my paraproteins for a while. An estimation is that they are around 400-500 again. We are not fazed by the results though. If I were to go totally off what my body was telling me, I would say I am getting better, and that I should get my butt waxed. But sometimes we don’t always listen to what our bodies tell us.

I am off to Albany for a 20 year school reunion this weekend. Twenty freakin years. Seems like just yesterday that I was full of uncertainty, confusion, quite awkward and had skinny legs. Well, that was indeed yesterday, but 20 years ago I was a novice at it all. Now, I have just had time to perfect those attributes.

I have let the groups of people who I work for know that I will not be around to work next semester. Ash and I are planning to do a bit of travelling if all goes well. I booked us into a weekend in Chicago early August to go against what the cancer has planned for me. So many plans have been ruptured over these 4 years. So many plane tickets lost, rescheduled, so many plans scrapped at the last minute due to health issues. I have been moving in the opposite spirit to cancer every chance I have had over the four years, and so far it has just resulted in losing a whole lotta money. But this cancer has to crack soon. I will do everything I can to go against its intent to steal anything else. It has taken its pound of flesh. And the rest.

I have still not wept. This is strange. The only time I have wept recently was during prayer for something else. This is another story in itself, but for another time perhaps. I am still waiting to see if the answer to the praying is as significant now as it was significant then. This is a terrible thing to do – half explaining a scenario and then not ending it properly. Anyway, this is usually the time to crumble numerous times as I explain the latest to family and friends, but it hasn’t happened this way this time. I am not sure if this is a good thing or bad thing. Maybe a person just gets assigned a certain amount of tears for a lifetime and if you use yours up before your 80 years is up then you just have to resort to eyedrops. Not sure.

Physically, things are pretty good. I can feel pain in my left femur and a few left ribs. The PET scan showed lesions in both femurs, ribs, numerous bones in the shoulder areas, but none in the spine, well, no big ones at least. My head has been spinning for the last 4 days which I have not had before. On the positive side of things, I sometimes feel that my lesions are just getting better – that the healing has happened and the only activity going on at the moment is regeneration of bone and tissue, all with good cells.

I know that I say there is a lot going on that I am not writing up, but there is. I am going to start writing this stuff up soon, as I feel it is the season to do so. It is mainly about how I have seen God over the years, and how that has changed – especially over the last few years. It is nigh impossible to not have a God change on you over an extended time of difficulty. God does not change, we are told, so yay for the ability for our understanding of God to change. I have heard people say it doesn’t matter what each individual thinks about God, if they think about God at all. Hmmmm – very post modern – where its ok to perceive God how you like, make him or her fit how you want. This works for Mr Potatohead, but probably not the best way to treat the Creator of the world. Not sure if I will put it on this site or another one, but I have some time to write now, so I am doing my finger stretches now.

Go on.  Off you go.

Whenever I have a major procedure that involves pain or risk, or receive big news (usually unwelcomed news) I splurge on a Bacon Double Cheeseburger meal (minus tomato).  Today, after the hospital visit, I supersized the order, and swapped the coke for a chocolate thick shake.

Ash and I have been praying that the options for me would be made clear, and today we feel they have never been clearer.  I was going to chat to Dr Dejan about coming off the trial.  I was willing to stay on it for a few more cycles if it meant the trial would give valuable data for other people in the same situation.  But for me it is clear that the trial has not worked.  As I was  about to talk to Dr D about coming off, he told us that it was their opinion that I was receiving the placebo trial drug (still receiving the real Velcade though) and so they had taken me off the trial as it was clearly not working.

My counts now are expected to be through the roof based on the exponential trend over the last few tests.  I felt completely relieved when he said this.  I didn’t want any more chemo, and the decision today was made very easy.  Prayer answered.

Another treatment option was presented, involving Velcade and 3 other hardcore chemo drugs.  It would involve another central line being put into my heart chamber via my neck again, 4-week cycles that we may have to repeat up to 3 or 4 times (therefore 3 or four months).  It would involve being an inpatient for significant amounts of time, becoming neutropenic and the side effects are significant.  I have already decided to not do this treatment, nor any other of the suggested ones that follow.  Dr D understood completely.

So now that leaves us in a place.  I haven’t been in this place before, but there is a sense of incredible relief for me.  I have had recent and significant miracles that have prepared me for hearing this news today, so we had encouragement and faith to operate from during the consult.  I still haven’t wept, which would be my usual response after such news.  In fact, quite the opposite – I have been excited all afternoon.  Ash and I spent the rest of the afternoon praying specifically for these next few months.  It is my expectation that the next two months especially will be glorious, whatever the outcome.

Ash and I have planned to be in the US from mid to late July, just after our wedding.  We are booked at a conference in Chicago in August, and we have various other plans that involve living rather than dying.  I have paid $70 for a ticket to the conference so I am not about to give that up, even though the exchange rate is in our favour, it is still $70 bucks.

My excitement is due to the fact that whatever happens, whatever the outcome, I am going to know soon.  We are trusting God with everything we have got, and when I feel my faith is lagging I am thankful for Ash and a host of others who are dripping with faith and encouragement that I can operate under.  After nearly 4 years of indescribable difficulty, an outcome is at hand.

We continue to pray furiously, passionately and with complete faith that the promises of God’s are good, that He is good, and that healing has been paid for by Christ at the cross.  The healings that we have witnessed and experienced in our own lives and what Jesus in his living, death and resurrection is enough.  I am secure in this now, regardless of outcome in my circumstance.

There is no losing option here.  Of this I am convinced and the truth of it manifests heavily in my spirit.  I am not feeling down.  I am not feeling defeated.  I am not feeling abandoned at this point at all.  On the contrary.

I feel like I am finally getting revelation of God’s love after recognising my own struggle in this area of accepting and recognising such love.  A glimpse is enough to bring about change.  This has been more difficult than I ever thought before, not because God’s love has not been there, but because of my own difficulty in accepting it.  This needs further explanation, but later.  For now, I am learning a lot, experiencing a lot, and experiencing peace at this time.

Between what I have seen in Ash’s life and the testimonies and teaching at our church, I have seen and heard the most amazing revelations of the transforming power of God I need for a time such as this.  I feel ready, excited, confident and peaceful about these next couple of months.  When it comes to what I believe about Jesus, I can never die a fool as He never lived as one.

My perceptions of who God is has almost done a complete shift recently, and it has still got a way to go – I still feel and live with perceptions that disfigure God, but thankfully these are being chipped away at.  I am dying to see God as He is, and now I know a powerful revelation is standing by.

Today is hospital day and quite a significant one as I will be talking with Dr D (Dr Brad’s reg) about stopping treatment.  I have just had my bloods taken and I am not at all worried about the results.  I just have a peace about the future, no matter what is going on in my body.

Ash and I believe we are not fighting against the natural realm, so our trust is now solely in God.  There is good reason.

We have been encountering miracles along the way that have been encouraging to say the least.

This last weekend was a tiring one.  After a great family night on Saturday, my body was clearly not coping with the physically active weekend.  I could hardly walk due to hip pain and my back was also in severe pain.  I got home Saturday night and limped straight to bed.

A big part of this week has been that I have completely come off all painkillers.  I don’t even take panadol, and the fact that there is still oxycontin in the house and I am not taking any is a miracle in itself.  No longer am I physically addicted, but for the first time since November 2009 I am not mentally addicted.  My experience with painkiller addiction would need a decent chapter on its own.  I think some people’s nature and certain drugs are a bad combination.  For me they have been as much of a curse as they have been a help.  Nineteen months with hillbilly heroin ended last week. Check this link out. The whole doco can be seen on YouTube. Frightening.

Anyway, back to Saturday night pain…  I took nothing for the pain that night, partly because there are no painkillers at this stage that would put a dent in any of my pain other than stuff I don’t want to be on again.  Ash and I just prayed that it would be gone in the morning.

I woke up and was expecting the pain to be gone, but alas, I was still in agony with both leg and back pain – often needing to walk holding onto something.  I was working on some music for church that evening.  Every 10 minutes or so I would go and lay on the couch to try stretch my back out to ease the pain, then go back into the music room.

Ash came in and we were just talking about a few things.  Part of the conversation involved Ash saying “You are healed, you have no pain, you are healthy, and I declare this in Jesus name.”

We kept on talking for about five minutes while I was sitting down.  I had been sitting down for about 15 minutes so I stood up to go to the couch again.  As soon as I stood up, it was obvious that both my leg pain and back pain had gone.  I hadn’t even thought about what Ash said a few minutes before I stood up.

I said, “It’s gone!”  I was still in a little shock that it had disappeared.  I started kicking my leg back and forth in the air to make sure there was no pain, then started running through the house, putting full weight on it and prancing about like a ballerin… Hip Hop dancer.  We were just laughing and thanking God – these things have been happening often, yet we still get a buzz from it and the encouragement we get is much needed.

I am writing this from the hospital before the beginning of my 6^th cycle.  Must head into the consult now with Dr Dejan (pronounced Dayan) – brilliant doctor.  Anyway, got to go.

All earthly things are pointing the other direction.  My test results recently have shown the cancer is highly active again.  Kappa light chains were about 150 during my last cycle of chemo (they are considered safe when they are less than 20.  I had my stem-cell transplant when they spiked to 114).  The dull pain in my thigh and ribs has been fairly persistent throughout the trial.  I haven’s seen any scan results recently, but the sensation is enough to know things are not right.

I had a PET scan last Friday.  Some people enjoy waterslides.  I enjoy PET scans.  And MRIs. And CTs – except for the radiation component.  MRIs are my fave because of the sensation caused by the magnetic pulsing.  Anyway.  I am not even remotely interested in the PET scan results.  I know enough from my own body to know what they are going to show.

For whatever reason, this trial with Velcade is not working for me anymore.  This sounds disheartening, but for me, I can’t help but be excited.  It is going to be a very interesting 6 months.

There are some big decisions to be made, but Ash and I have been praying that God would make it clear to us what direction to take, what decisions to make – especially in regards to when to stop treatment.  I feel this decision is closer than what we thought it was going to be.  As options become limited, decisions become easier to make.  The decision, is becoming easier every day.

I will be having a talk with the trial Doctor next week regarding when to stop the trial.

Ash and I are having to completely rely on God for any change to this situation.  This brings waves of excitement as we believe God’s word is good on this matter – healing has been paid for along with forgiveness for sin.  God speaks about about it in the same breath.  We have no other hope.

I mentioned the waves of excitement.  This is another way of saying there are times I still get overwhelmed by sadness with my current condition.  I have had many great days where pain hasn’t been a huge factor.  And then there are days where I bury my head in the couch begging God to take the pain away, to heal – the healing where pain, sickness, disease is literally taken away.  That is what I long for.

So that brings me back to the decision.  The decision is that I am healed, based on what Christ did in taking on our sickness and disease.  It is our decision to trust entirely in that reality, and along with that make decisions which demonstrate that belief.  One of those decisions is to stop treatment.  If we believe what Christ did was good enough, then it is good enough to act on.

There is so much that is going on in our lives at the moment that I will write about later.

We have been feeling the opposite.  I feel quite well and although there is significant pain in my ribs and thigh, we believe that is being looked after.  We have never felt as confident and provided for as we have since praying as we have been, and believing as we have.

Still, the news did not faze us at all – it was literally business as usual.  The praying just got more intense, more specific and more encouraging.  There is more going on than a focus for healing.  A lifestyle that reflects God’s truth is a priority.  Until I understand the true nature of God, the more I feel I am running around in useless circles, trying to do His job.  I could do without this running around at the moment.

Wedding plans are coming along superbly.  We feel so provided for, and we believe the destructive events that led to the postponing of the first two dates have been turned into something better for us.  The last few months have been incredible.

This week, I have a PET scan and a few more blood tests to get through before they will work out some medical options for us to consider.  The closer these medical decisions come, the closer the reality of Christ’s healing becomes.  So we trust, we get excited, we have absolute peace and our hope grows every day.  Very much a win/win situation here.  I feel I have everything I need.

We are prepared for an amazing year.

There were significant breakthroughs in prayer also.  After injuring my back one night, I spent a couple of days being quite limited in my ability to move much at all.  Ash and I have been spending a lot of time praying with authority over the cancer – commanding it to go and pursuing prayer with people who believe healing is possible.  I was lying on the couch, unable to move much at all because of my back pain.  I prayed with authority that my pain would go, and sure enough, it went.  I got up, walked down the park to meet Guennadi, then went to pick Ash up from work.  I was able to run across the road quite freely!

A couple of days later, I was experiencing whole body pain more than usual.  I went to bed talking to God, just expressing how tired I was getting because of the body pain.  I still have the mindset of unbelief when I see people walking or running.  I can only imagine what it is like to move with such ease.  After letting God know of my frustrations and what the end of a rope looks like, I fell asleep.  I woke up at 1am quite abruptly – it was a peaceful awakening, but it was sudden enough for me to ask God why had he woken me up.  I felt prompted to pray over my body specifically for areas of pain as we have been learning to do recently.  This lasted half an hour or so before I fell asleep again.  The next morning I woke up free of pain and a significant amount of energy.  That day, I was able to work pretty much the whole day doing gardening, clean the house and pack up boxes of stuff.  I had no back-pain, heaps of energy and my body-pain was not noticeable other than being unfit!

I cannot deny feeling significantly better after praying during the last week or so.  I have no need to make this stuff up.  Others have witnessed the change also.  I feel there is more to come too as I still have residual pain in my left thigh and ribs.

I have just started my 5^th cycle of chemo today, so I spent the day at the hospital.  I got results back that could have been discouraging, but I feel more excited than discouraged.  My kappa light chain counts from two or three weeks ago were up to 40 (considered safe below 20).  I will find out what my counts were from today at the end of the week.  This was quite unexpected.

Initially I was disappointed, but that turned into excitement – I feel God’s healing trumps the counts – low or high.

Ash just reminded me now on the phone that those tests were done a while ago and a lot has happened since then.  Much prayer, heaps of encouraging breakthroughs with pain and other experiences that have built our faith.  We haven’t even been entertaining the thought of “what if I don’t get healed?”

Our focus is not on healing.  It is on living to honour God, planning for an abundant life and expecting His promises to unfold.  We have seen, heard of and experienced more miracles in the last few months than we could imagine.  That alone has been worth gold.

I would like to pay tribute to Tim Gregory, a legend of a man who was a great inspiration to me since meeting him at Chidlow Church about 12 years ago.  After being diagnosed with mesothelioma last year, he died last week at a ripe old age.  We all wish he had another 20 years or so.  His character and personality was too large to fit into anything less than a full set of years.  He leaves a great legacy, and we will miss him till we meet again.  That is all part of the deal in the hope that we have.

Sunday 17th April (this coming weekend) at 3pm instead of 4.  Everyone welcome.

Our lives are on full speed ahead, learning so much about the power of God, nature of God and love of God. Ash is getting baptized next week at Cottesloe Beach, at 3pm. We are experiencing amazing answers to prayer and believe healing is taking place over and over. We are convinced my time is far from over, and we accept that God has promised me old age and complete healing, so that is what we persist in.

I don’t know what I would be doing at the moment without Ash. She has been an amazing encourager, motivator and has inspired me in every way to persist in truth and life.

Ash located some people in Perth who are right into praying for healing, and do it with incredible power. We will continue there and with other things until complete healing comes. We are not obsessed with healing, we are obsessed with transformation – a life of complete dedication. We have been promised healing, that has been promised. Now we do what we can to accept it, believe it, claim it and live in it.

My grief is gone. The last few stints in hospital I found myself weeping uncontrollably. It was a mixture of being overwhelmed by being cared for so well, tiredness, and the being absolutely over having needles stuck in me over, and over, and over, and over. I had reached the end of my patience as far as being a patient is concerned. I want to leave this life of being surrounded by death and disease. I continue to choose life, yet occasionally I must tend to the medical needs of my body. This practice must come to an end, and miraculous restoration has to take its place.

I have had this last week off chemo, to give my body a break to recover. Tomorrow I start another cycle on the chemo trial. I am in two minds. On one hand, I really want to stop the chemo on the basis I believe it won’t be necessary. Then on the other hand, I have been here before and tumors have come back. I am running out of bones for the tumors to feed on, and I absolutely deny their right to my body anyway.

This is the most hideous, yet triumphant battle of my life. It has been more difficult than I could ever express here, and there are no words to explain what has gone on in recent years. That is why God gave us the ability to groan. Often, a groan accompanied by tears is the only thing that can adequately convey the deepest grief.

Now, I look forward to a lifetime ahead, and I believe this more than ever. I am not harping on about this as much as declaring it. I need to be surrounded by people who believe the same. I was reminded last night how blessed I am to have the people in my life that I have. People who have been praying for me relentlessly – I am overwhelmed. My thanks to you include my relentless continuation in pursuing an outcome that glorifies God, so that through this testimony, many will come to know the relentless love of our Creator. Word.

After all the medications they have given me to get my bowels on the move, in the end I think what has been most effective was me going to by the Quokka (Trading Post) paper. Gets me moving every time. At the moment, I would love to build a big shed house, so I have been busy with pen and paper refining my design for a ecofriendly shed/house. It keeps my brain occupied anyway.

Looking forward to my new video camera arriving next week also. It has been a while since my last ones were stolen, so now I can get back into a bit of hobby filming and what-not. My mind has been dwelling on being better, having an energetic body, free from disease and back into action soon. God has been doing some great stuff in my changing thinking, so I am excited to see where this is heading.

So thankful for peoples’ prayers for me in every way.

I made a bee-line for the freeway in the direction of home as I was very nauseous after taking some oral chemo that morning. I ended up on the side of the freeway trying my best to not vomit all over my work-pants and shoes. Not that successful.

For the next 24 hours, my guts were in spasms. I thought it might get better overnight but the situation just got worse, so Friday afternoon I checked myself into ED at Charlies to get things sorted. After an Xray or two and an overnight stay, I felt a bit better so I was able to go home. The problem never really got sorted, it is just that I felt better.

The weekend was pretty much wiped out by the fact that I was still in intermittent pain. This morning was not that better so I took my overnight bag down to Hollywood Private Hospital to get the problem sorted out for good. This place is like heaven with Foxtel. It is luxury hotel first, hospital second. Honestly, it blows me away how well we in the west get cared for with our health. We do not know how great we have it.

I haven’t slept much for days. I haven’t had a full meal since last Wednesday night. I have had nausea pretty constantly since Thursday morning now and I have had a gutful of feeling this way. I have been so teary when being admitted as I feel the incredible care I have been given. Amazing. Humbling. And I am just dead tired.

So the goal over these next few days is to sort out what is going on. X-rays, enemas and other forms of torment have been suggested, but I do not mind what they do at this point. I am looking forward to feeling good again. Soon.

Everything else is good, if not great. Some fantastic life things are going on and Ash and I have been challenged daily to continue to think about all the great things that we have, all the positive things that are going on.

At the moment, I am beat, just need to sleep.

The bulk of which I will talk about at a later time, but at the moment, the day-to-day meanderings will need to suffice.

The days at the moment are recorded on my drug chart calendar as a tick (meaning I was feeling ok), a N = Nausea or a T = Tired. I have most days split recently with all three symbols appearing in any given day, but often the N and usually the T. Still, great things happening.

I have been blown away by people’s love and care during the last week which was a birthday week for me. I turned 37 which, let’s face it, is pretty much 40. Whoever coined the phrase ‘Life begins at 40′ had better not have been making stuff up, otherwise I will be heading over to their house in less than 3 years time with a rather large baseball bat, or at least some hot tar and feathers. Not really. I am more than happy with how things are at the moment. I have all the support in the world, all the hope, a lifetime of great experiences, and everything I am experiencing now is worth gold – absolutely.

I have Ash with me, and she has overwhelmed me with goodness, care, and inspired me in ways I thought I would inspire her. Things have got crazy in our world, in the best way possible. More is yet to come.

God is pummelling me with challenges at the moment that I am finding exciting to learn about, experience, and wanting to participate in. It had its beginning in the desire to be healed, but is ending up in a lifestyle of massive expectation of what power is available to us through Him. No limits, aside those which we apply.

Cryptic, yes. But I have been left hanging on more than one occasion, so I am sure you will survive.

That’s enough, for now.

We feel like we are on a massive learning curve. On Monday and Tuesday night we went down to see Bill Johnson speak on healing. It was awesome. There was great teaching on the reality of God’s Kingdom being released in our lives, and how we can live our lives expecting God’s power to be demonstrated in healing, spiritual breakthrough, etc. as the norm, not the exception. Bill went through some principles of God and healing – we could have listened all night.

We all then went into a time of prayer for people to be healed. Firstly, Bill asked if there were any people with injuries with metal plates or screws etc. or where people had injuries that hadn’t healed properly. I remained sitting, although Ash encouraged me to get prayer for my hip. I thought ‘It’s a whole hip! How could God replace the whole chunk of metal I have in it?’ Anyway, I remained sitting down, prayed for others, and then realising how I was limiting my thinking of God. Others have been healed, their metal disappeared.

Then his team gave words of knowledge for specific sicknesses and injuries. I think the first guy said ‘Is there anyone here with a blood disorder or disease?’ I stood up and received prayer from people around me for healing. We were encouraged to test our our injuries/diseases after prayer to see if we noticed any difference. It is a bit more difficult to test out my disorder. I could have offered to bleed everywhere and then clot as quickly as possible to see if my platelets had come back up from 40, but I didn’t.

I still came away really encouraged, and I felt like I had energy. This whole week I have been pretty much flat out on a couch, not being able to do much at all. The chemo has really hit hard. We decided to come back again on the Tuesday.

Tuesday was just as good. Great teaching, and very encouraging. After Bill had spoken, we went into another time of prayer for healing. This time, he asked specifically if there were any people who had a terminal illness, anyone who without healing would die of their disease. I was surprised that out of maybe 700 people, there were only about 4-5 of us who stood. The whole church prayed for us, and for some time. Although I didn’t feel any physical sensation, I feel my hope was topped up and I again came away very encouraged.

The most encouraging part of the night for me was what happened after the praying. A not got passed down from the left side of the building and the note stopped at me (the people who gave it to me told me it was intended for me – I hope I heard right). Anyway, the note had written on it a word of knowledge that someone received while I was being prayed for. I won’t write it up here, but it again gave me hope for the future, hope that I would be healed, hope that there would be resolution.

There were many people healed again that night, and I am not sure where I stand with my sickness. My body still feels run down with chemo, sore from everything and I can still feel pain from specific locations. I am still convinced, more than ever, that my only hope for complete healing is through persistent prayer for God to clean up my body, to totally restore it. There are way too many things wrong with it for any hospital to deal with.

I haven’t stopped listening to CDs or watching youtube videos on this teaching since. It is not even just about the healing. It is about a lifestyle where God’s power shows up all the time. It is a lifestyle that I want to pursue, even if healing is not an outcome.

This has pretty much consumed our week. Physically and mentally, I feel like everything is quite a blur. I hate being on chemo. It is keeping me alive, but it is hard not to get disappointed at the low level of functionality of my body and mind. I am so thankful for what I have, and who I have. Ash has been amazing in every way. She has been excited by everything we are experiencing, even when I am tired and run down.

Some amazing things are going on, no doubt.

Yesterday I hardly moved from the couch, and today was not much different other than I forced myself to join Ash at the beach, just to get out of the house. My body was pretty sore again, all over, and once I had lay down in the sand, I was there to stay for a time. I managed to get one dip in before heading home which made me feel a great deal better – something about the ocean that soothes like nothing else.

We will head back to the next healing service tomorrow. Will probably write more detail then when not so tired.

If I had of stayed in one town, one house, one job, one street, one everything – then things may feel like they have some consistency.

The older I get, the less I feel like I am every going to feel a sense of belonging anywhere.

I have no place I feel at home in. The place I feel I can feel most relaxed is in a hospital bed of some kind. A private room, with my own bathroom, tv, meals brought to me – seems the closest I have felt to feeling a sense of consistency. Everywhere else I seem displaced.

The old car I drive makes me feel at home. The smell of 1970′s vehicle upholstery, burning oil and the familiar clunking rhythm of environmentally displacing engines remind me of the cars I remember from when I was 4 or 5. But you can’t live in these cars, tempted as I might be to.

I yearn to be somewhere where I can really rest. There is no place where that happens anymore, and I don’t expect it to return. There is no place I feel like I feel is mine. Maybe it is because I have lived in way too many different places in the last two years. Maybe it has been because my mind has not been able to settle for so long.

Whatever it is, I feel displaced. I feel more temporary. I feel like the only things that bring me connection to security are those which were present when I was a young kid – ironically, during overwhelming insecurity.

If the car had a private bathroom maybe…

My mind is overwhelmed. So many things to consider. It is like there is too much happening and everything has had to grind to a halt for self-preservation. I don’t feel like I can make decisions at the moment.

The heat here in Perth too is just too much. Can’t venture out the door, unless there is a destination with an air-conditioner. Other than that, it is a case of keeping as cool as possible by having the occasional cool shower and laying by the fan. Regulating body temperature at the moment is difficult, as the chemo plays games with my body. They are not the games I enjoy.

I have been feeling a lot more nauseous on this round of chemo for some reason too. It could be the heat, or it could be that I am one of the 50% of participants who actually have the trial drug rather than the placebo.

I am struggling to keep the strength up to fight this thing to be honest. I haven’t been able to process this step of being on the trial. I am thankful to be on it, no doubt, as it has certainly worked so well already. But what next? I always saw this trial as the last step, and medically it is really – after that it is just hit or miss. So while my mind tries to get the strength to pursue healing, my body gets tired, the complexities of life get bigger and it ends up being a lot easier to let my body rest, rest, rest.

It is this rest though that seems too much like not living that crushes me. I want to be doing so many things, but my body and mind get cramped to the point of frustration. I dream of being healed, of a new life. There is so much that is needed to win this.

There is more to be expected from God on my healing I believe, but it is just so difficult to not get discouraged, distracted, disappointed. Where to from here?

At this point, I feel all my ‘healing’ options are colliding at once. Miraculous healing from God, healing through diet, healing through medicine, healing through exercise, detox programs, therapy this, therapoo that… I am encountering the confusion that is not helped at all by being on significant quantities of painkillers and chemo brain.

I would like healing from God, full stop. Something definite. Something miraculous. Something. I guess I want that one because it is certain. I want the Author and Creator of this body to re-write and tweek. To command cells to do what is right. That is what I need. That is what I want.

Every time I go through a spell of tumours, my skeletal carcass is eaten away in some form or another. I believe that can be healed too, but in the case of my hip, I still wish that I didn’t have to cart around a prosthetic that is attached to me, but not me to it. But on that topic of hip, ever since I took that video of me sprinting at speed down the street demonstrating my lack of hip pain, I have not had any hip pain! That is really phenomenal. considering I have spent a year being tormented by the pain – to the point of planning a complete hip replacement in the hope that it may stop the pain.

I suppose it was an amazing miracle in itself that an injury like the hip caused one year’s worth of excruciating pain, then, just went overnight. I can’t really put it down to anything else but a slight change in medication. I happened to find a bottle of Slow K (potassium chloride) left over from my stem-cell transplant. They tasted like sugar coated almonds so I took some one night (it is the way some Harris family members have come to test medications:) and the pain was gone the next day. Please do not try this at home.

On the diet front, Ash has been phenomenal. She has researched specific juices to keep me healthy on the inside , as well as come across some interesting research on Curcumin which is an extract from the turmeric spice. It has been effective in the treatment of myeloma, to keep it in at least a ‘smouldering’ state.

We have also been really blessed to have great support from our Osteopathy friends that I have been seeing for a while for my range of ailments – mainly my hip and back. They have a really wholistic approach to healing, so when I went there to have my hip seen to, they were able to help out with other parts of my body. They’re names are Kel and Kath, and they have been so helpful to us in support and knowledge. Coffee enemas may also be on the menu down the track, so that could be a good time to get to know Kel a little more. We’ll have to be more specific in the future when either of us suggest for catching up over a coffee, just so I know whether to bring tubing or macaroons.

Although the chemo trial goes for a year, I expect that the peripheral neuropathy will set in earlier than that. I don’t feel this is a pessimistic viewpoint, just a more realistic one based on the way my body has responded in the past.

To clarify, if I haven’t explained this in the past, the chemical trial is run by the hospital over the year and Dr Brad is overseeing its application at Charles Gairdiner Hospital. It is an international trial using the drugs Velcade, Dexamethasone and Panibinostat. I have used the two drugs Velcade and Dexamethasone in tandem before with great results. The only downside is that the nerve damage set in, and that it cost too much for the government to continue paying for it.

Dr Brad got me onto the trial here at Charlies, which I am incredibly grateful for. I didn’t want to go on it, as it signifies the last line of treatment medically available that we are willing at this point to try. After this, medically it is hit or miss.

I want God in on this. I have never felt abandoned by Him, I stand by that. I do wish that more happened before hips went, hair went, etc. Seeing things that make me look sick, make me feel sick. I want to push the limits in my own life about how I believe in the power of prayer for healing by my Creator. I am encouraged incredibly by my church, the people there are beyond amazing, as are my other friends and fam. I almost feel ‘outprayed’ as others take my situation more dire than I do at times.

Ash has endured some of the more bizarre situations. She has had to organise a complete wedding in Brisbane, watch it wash down the river in a natural disaster, re-plan the wedding here in Perth, then drive her fiance to Emergency Department instead as pain got more intense by the day. To cancel that one too was heartbreaking. Add this onto moving state, away from family and friends, etc. She never ceases to amaze me and I am blown away by her compassion, empathy and incredible care for others even while all these other things going on. I feel so incredibly blessed by her. It is Ash’s birthday this coming Saturday. I know without doubt this world got a wonderful gift when Ash was born.

The drugs have taken a big toll on my body. I still cannot focus properly, and I have the twitch in my hands that ensures I find difficulty when typing, but these side effects may be pretty normal. It is hard to know what is normal anymore with so many drugs going through the system at this point.

Pretty tired now. Am meant to head to Fremantle today, but may have to rest up instead. Ash stars some work local work today, more for sanity than anything else. Looking forward to something other than health focus to be honest.

The cancellation of the wedding is the biggest letdown. Given the circumstances however, I know that it is the right decision. Purely from a health perspective, I am laying here in bed on a normal Saturday morning, struggling to focus on words on the screen, struggling with lethargy, struggling to grasp the overwhelming task ahead of getting through this chemo. Not looking forward to it.

I have been on a cocktail of painkillers since I have been in hospital, and they are messing with me I think. I have uncontrollable spasms in my hands that have resulted in dropping things, not being able to type or write etc. Not sure if that will go or not but it makes it hard to get things done.

Since I have been in hostpital, 5 new patients have come and gone, and I have been the second longest-laying patient. Great. The Highlight has been having Jemilla’s 1st birthday here yesterday and the family come up and have a party here at across the hospital hallway. I am really thankful for fam and friends who have been able to pop in and I look forward to seeing others after I get out.

I have had literally hundreds of cannula placements in my arms over the years to get drugs in, to get stuff out. I thought it was an easy procedure to place a cannula. I now have a new appreciation for those who have placed these tubes in my arms. Instead of enjoying matrimonial bliss today, I had a trainee doctor come to place my cannula. First shot was a miss, but it took about 10 minutes of fishing around before concluding that he had punctured and re-punctured the vein too many times to keep going. Except he did. The next 40 minutes were spent trying to get a cannula into a vein in my arm. Dr Think-I-Can-Do-It didn’t end up finding a vein, and my arm ended up with 4 dot-band-aid cemetery on it, paying tribute to the numerous vein casualties we had lost over the 40 minutes or so.

The defeated Dr organised another vein digger to tap the vein, as we were under a strict time limit. I had to get this dose of Velcade in before 2pm or we would be outside the parameters of the trial requirements. The vein had a cannula after only 2 tries on the other arm, so I have 6 punctures over my arm all up, but we got one in. Nurse Annika, who is one of my favourite nurses in the world, looked after me a few years ago when I had my stem-cell transplant. She came in and injected my life-saving Velcade. Done.

My mind is on the wedding that Ash and I were supposed to have today. We look forward to the day when the celebration will take place. Got to get through these health issues for now.

A couple of days ago, the decision had to be made to postpone the wedding date… again.

This was a heartbreaking decision, and one that we have really battled with. Ash has planned both the weddings with phenomenal detail, creativity and class. The beautiful themes and ideas she has been able to develop have been just brilliant. It has been the most difficult set of decisions over the last few weeks and months.

I haven’t written in the last few days I have been in hospital as I have unable to write at all really apart from a few short letters. I haven’t been able to focus on any reading and writing due to the drugs making me very dizzy and they make me see at least two of everything. Even as I write this , my vision is very dizzy and my hands are jolting uncontrollably it seems. I am sure once the pain killers come down I will return to normal.

Over the last few days, we have been waiting anxiously for the results from my tests in order to qualify for what is called the Panorama Trial. In it, I am given two control drugs, Velcade and Dexamethasone, and a test drug called Panobinostat. I do not know if I get this drug or a placebo – it is a 50/50 chance. But I am on the trial for the control drugs, as they worked very well for me last time.

The hospital now pays for my drugs, and they will provide a year’s worth of the drug all up. If I take it for 6 months, and it makes a difference for me, then they will give it to me for another 6 months approximately. Very thankful for this. Dr Brad has done a lot for me in getting me onto the right trials and treatment. He has been amazing for me the whole time. Relentless.

A couple of days ago, I had to have the last of the tests which was a bone marrow aspirate. This is the one that they knock you out for a little while with Medaz. Usually it takes about 3 vials (15mg ofMedaz) to get me to the point where I am up for it while still carrying on a very intelligible conversation (so I believe). This time I was out cold after one injection. I think I was just so physically and emotionally exhausted after the previous week I could have been knocked out quite easily with a sip of mouthwash.

Everything went well. Yesterday, the results came through and I just qualified to have the trial. This was both the best news, and the worst. It was the best news because I could now receive the only drug that we know of now that can reduce the tumor activity and stop it from destroying bone. That is what I have been most worried about. I can’t do much by way of sleeping or relaxing knowing that the pain is associated with bone destruction. Call me old fashioned.
Last night, I got the news that I had qualified for the trial…just.

Nurse Louise will be my Trial Coordinator for the length of the trial. I think peripheral neuropathy will be a problem for me on this trial. It was the last time. It is when you get the sensation that your hands and feet are burning up. It is a terrible sensation, and quite destructive to your nerves. Nasty stuff.

Ash has been amazing. Looking after my every need and just being by my side whenever she can. She has been able to take in the parts of the conversations too that I miss being mostly drugged up and unable to concentrate on any detail. It has been great to have her mum Pam over at this time too. Just been perfect timing.

I took my first drugs last night. Before I did this however, I had to have a series of ECGs to monitor my heart rate and output capacity ratios. All tests went well and I officially started the trial with a shot of Velcade, Dexamethasone Tablets and Panobinistat or it’s placebo. I feel like it has made a difference already, in that the Dexies shrink the lesions and take the pain away. They also reduce the destruction caused by the tumors to the bone.

I am expecting the Velcade will begin to make me feel a little lethargic tomorrow as it kicks in. As long as it is doing its job.

So the wedding has been postponed, and that is the most difficult thing. Ash has put her everything into these upcoming events, and now we have to reschedule. We will wait until we know how things go for the trial before setting the new date. I really felt like I was crumbling under many pressures to be able to take on while in such a state, and I knew there would be an intense weekend of testing, being unwell, monitoring, more injections and more uncertainty. It was going to be a big call to make it to a celebratory marriage whilst feeling like I was having chemotherapy.

I am expected to be in this hospital until Monday. Will write more when drugs calm down.

After waiting a couple of days for things to improve, I decided it was time to once again head to ED. Again, I was blown away by everyone’s care for me when I came in. I had called ahead to Haematology to get advice from Dr Brad who told me to come straight in. When I got to ED, they were expecting me, had my name on a bed, and on a ‘crazy busy’ day in ED, I was in a resus room within minutes being checked over.

It was only a short time before I was on the ward, and thankfully, in my own room where I was able to get settled straight away. It is incredibly quiet here on the ward which has been great as I have been craving sleep for days.

Pain management is the main thing at this point. It has put my mind at ease quite a bit not having to think too much about what is going on in my body physically, and I can lay down and sit up without being too uncomfortable. I have stopped underestimating my description of the pain to the nurses so that we just go straight to maximum pain meds, including oxycontin, oxycodone, pregablin, endone, paracetamol and a shot of morphine every two hours. Still, the pain creeps back once these wear off and it is only after each shot of morphine that I feel normal.

I am here in hospital until Tuesday at least. They are fast-tracking the tests as much as possible so that I can qualify to get onto Velcade as early as Monday morning. This begins what is planned to be a year of chemo.

That is the objective account of what is happening. My mind feels overwhelmed with the implications of the current situation but after a weekend of rest I hope I can begin to process things a bit better.

I am so thankful for people’s prayers and support at this time. It has meant so much to me, and has been a huge comfort at a time of huge discomfort. I don’t feel abandoned by God at all, although I am struggling to deal with the reality that all this is happening again and I feel like I have very little reserve of strength left for this stage. If it were not for such amazing family, friends and fiancées I would be lost I am sure. Ash’s mum Pam arrived a couple of days ago for a few weeks over the wedding. It has worked out great that she can be here for Ash during this time. Ash has been such an amazing support – she has just arrived with Pam, better go

From now, I will be trying to qualify for a hospital based trail where I can access the drug Velcade that kept me going for a good part of last year and the year before. It is too expensive for long term, but the hospital will be paying for me to stay on it for 6 months to a year. To qualify, the disease needs to be present in blood and urine, I have to have had 3 lines of treatment (check) as well as a host of other criteria. Considering the rate and spread of my disease at this time, it seems that I will qualify fairly easily. I was hoping to not qualify, as this trial at this point is the last line of treatment we have that we know I am responsive to.

I am glad that I possibly get a year or so, but the last time I was on this drug I remember having the realisation that this drug was not making me better, it was just keeping me alive to get to the hospital for the next treatment. Disheartening.

Now things have changed somewhat. Ash and I are still running around planning a wedding, we are getting the house ready for visitors for the wedding and dealing with the health stuff on top of that. If it was just ‘stuff’ to organise, it would be manageable. But it is the other ‘stuff’ in life that breaks our backs, our strength, our resilience and our joy. These are the trials that make the hospital based trials a walk in the park.

We are now quite concerned about the rapid progression, and that we know it is still close to the spine. I expect to be starting radiotherapy asap as we wait on a call this morning to find out when to come into the hospital.

On to better news, it looks as though after our Brisbane wedding venue didn’t work out due to floods, it seems we are able to get into a fabulous location here in Perth on Cottesloe Beach. Cottesloe has significance for us both, as we were engaged there, but also it was a place where Ash and her fam spent quite a bit of time with brother Mark when he was diagnosed with cancer. We find out today or tomorrow if we can lock it in.

We have had to cancel our wedding plans in Brisbane. Ash has been on the phone all morning cancelling bookings. It looks like we will be having a Perth wedding sometime in February. It is a shame that we may not be able to have as many family and friends from over east make it to the wedding. We will have to have a party over there when things settle down a bit after the cleanup. The clips below show where our wedding reception was going to take place. Appropriately named ‘Drift Restaurant’, part of it ended up floating down a river and crashing under a bridge and the other part completely underwater on the banks of the Brisbane River. Even as I write, the flooding continues to rise in some areas, so the enormity is still yet to be realised.

I have spent a couple of days in hospital, just being discharged yesterday afternoon. I had acute abdo pains all night a few nights ago, and after getting through the night with the pain, I ended up heading into Emergency at 5:30 in the morning. I had a dose of radiation the night before on my chest/abdo, but it was more of a digestive pain. It seems the combination of steroids, drugs, radiation and tumours caused enough pain to get me into have it checked out. As it turns out, again, it was a good thing that I ended up in hospital at this point.

When they checked out my PET scan results from last week, they were able to confirm that my tumours are not just on my spine. They are also on the left side of my ribs, right side of the ribs and back in my sternum. This was not the news we needed. It did mean, however, that our plans to go away and marry had to be changed in order to get treatment sooner rather than later. Even today, I am in enough pain to warrant being worried, not being able to move much without significant chest pain, even though I am on strong pain killers. The nerves on the left side of my chest have been crushed by tumours so I have lost a lot of the peripheral feeling in my skin on that side.

I will need to start radiation sooner rather than later, and it may mean I start the hospital trial sooner too. Not good. I mean, great that I am able to get the chemo, but being locked into a year of lethargy and discomfort does not get me that excited.

Our thoughts are with everyone who is going through this tragic time in these affected areas.

Ash and I are still planning at this stage to be married in Brisbane (which is one of the badly affected cities) on the 22nd of January (yes, end of next week). Already, our reception venue (which is located on the river) called ‘Drift’ has been flooded and is at risk of sinking or floating away.

We will be making decisions over the next few days as to what to do regarding the going ahead of our current plans considering all that locals need to be dealing with at the moment. Heartbreaking to see such devastation and tragedy.

Ash and I just booked and put a deposit on our honeymoon last night, and today we were told that we needed to radiate this baby pretty soon, so going away was a real concern. We ended up having to cancel the trip and come straight back to Perth after the wedding.

I will be given a one-off dose to the front of my ribs as we did last time, but the tumour on my spine will require many sessions over a month or so. The penny dropped today, as last night I told Ash I felt considerable pain in the left side of my lower back. Now it has a reason. It is rather painful, and keeps me awake most nights.

Still, today, I was incredibly happy. The airline was able to give us most of our deposit back, and there is a chance we may get even more back after the weekend. The rest of my body has been feeling really great and I am generally quite excited by everything that is going on aside from health.

I have a PET scan tomorrow, and get some blood results back. Great way to start the weekend

Not sure what happened here.  I am working on the theory that it may have something to do with some vitamin K (potassium) tablets that I found on top of the cupboard last night (in my search for panadol, or anything really).

It is about 7pm and I took another few K’s an hour ago, so I hope to see some continuation of good form.

Our trip to Dr Brad last week revealed that my cancer is again out of control.  This part was not meant to happen.  I went through a time of really believing that I had seen the end of this, and again it has come back.  The process of going through ups and downs, believing fervently in one thing, then having it change, makes me less certain about everything.  It doesn’t depend on how I feel, whether I am up or down.  It is just there, and it comes and goes when it wants.  I feel like I have tried everything.

My levels are high, but they are not quite high to qualify for Velcade again.  This is the drug that I responded well to last time.  Dr Brad is able to get me on the trial, which is hospital based, which means they very kindly look after the costs.  I do not want to qualify for the drug, as it means I have to stay within easy travelling distance from the hospital, live in constant lethargy and then that is kind of it.

We still want to look into as many other options as reasonable.

Ash and I are about two weeks from being married.  It seems at this stage we will be postponing the honeymoon to be back for treatment in time.  The first few months of the trial is said to be quite intense and our opportunities to travel will be limited.  A few weeks ago, I was discussing with the hip surgeon, Mr Khan, about doing a full hip replacement on my existing prosthesis sometime early next year.  At this rate, it seems chemo will be the priority.

After a pain in my ribs for a week or two, I suspected things weren’t going well.  I got some test results back this morning confirming that my cancer is once again back and the levels are way out of the safe zone.  This was not in the plan.

I have not written for a while as much has gone on that has been too difficult to write about, along with some great things happening as well.  The busyness factor has been out of control recently, as Ash and I prepare to get married in less than a month.  Ash has done an amazing job in organising so much, while I have been trying to get all my work done before the year is out.

My family continue to be amazing.  Mum has been looking after me at every opportunity and Dad again has come to my rescue invaluably to help me get my silver work completed.  For them, it is what they do normally, but for me, it has saved a lot of stress.

I am numb at the moment.  I think it was the first time today that I actually broke down a few times in the clinic.  I am usually fine until I have to tell other people, but when I see their reaction it is difficult to keep it together.  This is the first time that Ash has had to hear this kind of news first hand.  She has been such a support for me.  I have been so blessed to have people around me who have been incredible.

Enough for now.  Got to get on with being merry.  I guess it is a timely reminder at this time of year to spend whatever time we can with friends and family.  At least with Christmas eve, we know what season is around the corner.

Yes, Ash is an amazing woman.  It seemed that everything brilliant happened in the space of a few short months.  There was a remission, a complete change in thinking, a job that is just the most amazing work at the Uni with the most amazing staff and students, and now this – a relationship with Ash that has completely overwhelmed us both.  We both realise that our relationship has been a massive gift for each of us.

Ash’s brothers, Jai and Mark, used to live in Perth.  I spent a lot of time with Jai as he looked after Mark who had been diagnosed with cancer a short time before we met.  I used to catch up with Mark through various cancer networks before he went back to Queensland to live when he became too ill.  Sadly, Mark passed away in December last year.

Ash and I started a conversation about three months ago that hasn’t stopped.  We both don’t want to spend another minute apart, so we are both completely elated to be spending the rest of our lives together.

I can understand that there may be some people that may be completely surprised by this, and that is ok.  I am not surprised that people may be surprised, surprisingly.  While most peoples’ responses have been over the moon for us, it may take some more time for others to get to that stage, and that is fine too.  For us, however, we are incredibly happy.

In all this, I see God has provided everything once again.  The fact that it may not match up with some peoples’ ideas of how it should look no longer consumes me.  It would have many years ago, and even up until recently.  But I feel set free from these binds.  I have never felt such incredible blessing as what I feel now, along with freedom, excitement about the future and a passion for living.  I have no doubt whatsoever that the happiness and desire to live that my mind has shifted to has had such a significant part in my physical body responding, if not everything to do with it.

I was happy before I met Ash, but it has been a whirlwind of unexpected elation over recent months.  I have learned a lot from the mistakes in the past, one of the biggest learning how to move on from the past.  The freedom that it allows it unbelievable.  In April I had a date and a plan in place to remove my sorry arse from this planet.  A hopeless situation proved hopeful.

At this point, I believe that I used to have cancer, but not now.  I have been trying to explain it to people, that in the last few weeks, my happiness has been so utterly profound, that it is not just my emotions that indicate happiness, but I feel my physical body is happy too – and I know that some of you who have been through similar circumstances know exactly what I am talking about.  I feel that even at a cellular level, my body is physically enjoying a happiness that has been absent for a long time.  There is no stress, there is nothing but uncontrollable joy, health, smiles, optimism, plans for the future, plans for family, plans for spontaneity.

I now feel that everything that I have is so undeserved.  I have health, happiness again, an amazing family, incredibly loyal friends and a new chance at love.  I know that an incredible depth of love has been shown to me in immeasurable quantities from  my family and friends.  I have been loved by the best, and I live in light of this.

The MRI indicates a strong, solid spine with no evidence of any lesion or compromising fracture (all scarring and pitting is in keeping with healed myeloma).  So at least now I know that my spine is strong – I can pick things up again, bend over a little – without fearing something is going to snap.  I can’t begin to explain how debilitating the mere thought of that is, and how it affects how you operate every minute of the day.

The bone density scan came back on the same day.  The report said that my bones are as good as anyone else’s in my age group.  Yeah baby.

Receiving these good reports made me feel so much better!  They were like medicine to my bones.  Funny that.

After being in pain for another few months, it has been necessary to get back on the pain gear to make it through the day.  Oxycontin has once again become a friend whom I have come to depend on.  I get frantic when I run low, and panic when I run out.  I know what coming down can do to me.  After watching the last 10 minutes of a Dr Phil episode the other day, it seems a lot of people are affected by it.  There is a doco called The Oxycontin Express – I would be very keen to see it.  Pain medication has had a massive impact on my over the last year especially, to the point where I feel I have a personal relationship with my drug.  Thankfully, now it is under control and does its job well.

Here’s to strong bones.

I have been in constant pain with my back, usually when I first wake up in the morning, but I got to the stage where sensations in my lower body have been compromised, and getting worse.  I thought either my spine is compressing due to bone density issues, or there may be lesions that are pushing on my spinal cord causing various problems.

I got the slides back today, and the report had not been completed, as they need to wait for a spinal specialist Dr to analyse them.  I assessed the slides myself, and I am glad I did because it put my mind at rest insofar as I could not see any sign of cancer that I have noticed in other disease-ridden bones on previous scans.  I had terrible thoughts that my spine was full of disease, and about to snap, collapse or get into my spinal cord.  I will have to wait to see what the REAL doctors say, but for now, I am breathing a little easier.

We had church camp over this last weekend, and I have to say it felt like the best weekend of my life.  I can’t remember being happier.  I know some of the reasons why I was so incredibly happy, but overall, it is an absolute miracle that I am in a place where happiness is possible.  It was only about April where it was a given I would be dead by July.  Only God could have changed that circumstance.  It was a hopeless situation without Him.

My church family make me so incredibly happy – a group of real, honest people who don’t mind sharing the good with the bad, the struggles with the wins.  The leader, Grant, has demonstrated an authentic passion for Christ centred living, and the people who go minister to me in more ways I could ever imagine.  I am so thankful for them all.

Now, every part of me is passionate about staying alive.  I have many people to thank for that.  It is hard to imagine what it will be like to have a healthy body again, but I believe it is possible, and I intend to do everything I can to live this life to the full, to love as I have craved, to have family as I have yearned, to live out the dreams and desires I have had all my life.  I just pray for more time, and wisdom.  Not just a little more, but 50 years more, and a lot more wisdom.

I plan to celebrate my 50th anniversary with someone, have kids, grandkids, and great grandkids.  This is my hope at least, and if it is all I have got, then that is enough.

Dr Brad’s concern was the same as mine.  It seems to be either a tumour pushing on the spinal cord, or some compressed vertebrae.  Neither of these are good news, we just need to see exactly what it is before it gets any worse.  It grieves me to think of what else I may lose in the near future, and what I may have already lost.

This is tough, no doubt, but I am still drawn to see the big picture.  I am happy, have so much to look forward to, and more passion to be alive than ever before.

I just pray to be around to enjoy my new life for a long time.

Monday, I had a couple of scans.  Firstly, I had a bone density scan to see how my bone strength is going.  Then in the afternoon I had a CT scan to measure up for my radiation dose to my ribs.  All went well, a few new tattoos on my chest to locate the radiation.

Tuesday was a big day at Uni, tutoring 3 classes almost back to back.  It is a long day but I really love it.

Yesterday, I had a GP appointment in the morning to sort out my pain medications.  My back has been very sore and I am losing sensation from my waist down, so I fear nerve/spinal damage.  I have had to be back on the oxycontin to get any sleep, and during the day I feel like my spine is going to collapse – very unnerving.  In the afternoon, I had my one and only dose of radiation to kill off the tumour in my ribs.  I have felt rather nauseous since, but good to know that the tumour is on its way out.  My back now is my biggest concern.

Today, I am meant to supervise student teachers all over the place, but we’ll see how things go.  I have emailed Dr Brad requesting an urgent CT/MRI on my back.  The last thing I want or need is paralysis.  I fear there is a lesion in my spine.  It is difficult not to speculate, but the symptoms are quite severe and have been getting worse rapidly.

I am back to see Dr Brad tomorrow.  It is in this session that we will talk about further plans for my treatment.  I am keen to stay off chemo, but it will depend on the extent of my condition at this point.

My heart is the healthiest it has ever been I believe.  Despite the difficulties, uncertainty, underlying grief of loss and physical pain, my heart is happy beyond what I ever thought possible.  It was only six months ago that I was wanting to depart this earth as soon as possible, and had my date with death planned.  Now, I am the complete opposite – and that is the greatest miracle of all!  I have a passion to stay here, to experience further restoration.

I never thought I could love so deeply again, enjoy my work so passionately, fight so furiously to stay alive, or recognise such love as I feel now.  I do not fear death, but I am completely terrified of leaving those who I love too soon.  I believe in complete healing, so I will continue to pray for that to happen.  I am chatting with my pastor at the moment in regards to having a healing service in the next month to pray hard and faithfully for healing in my body and others.  I will post information once we have worked it out.

I feel like I am in the best situation now for getting better.  My head has been healed of torment, my heart is completely ecstatic.  I am so incredibly thankful for those people God has put in my life.  Just when I thought it was a better option to give into death, my reality changed and now I have everything to celebrate in life.  My body just needs to come in line with my head and heart – then it will be the strongest, happiest, healthiest, hunkiest body I would have ever had.

There are events that have happened recently where I feel God has sped things up, in His perfect timing, to have me looked after, loved in a way I have not registered before and full of ideas, hopes and aspirations for the future.  I can see a future of wife, family, healing, wholeness, peace and celebration – a far cry from months on end of depression, sadness, torment and imminent death.

If I had to go through the last 3 years to get to experience my last month, I would do it all over again, in a heartbeat.  The news gets better – I can only see things getting better.  No matter what my body does, my future is secure.  The temporary nature of what we have on this earth is heavy in my thinking.  The beauty of eternity is also big in my thoughts, but I am happy to hang here for as long as I possibly can to enjoy everything I have been given in this chapter of life.

I have just received a call from Haematology, and the CT/MRI requests are on their way.  I will hopefully get in today or tomorrow.

Dad is my hero.  Always has been.  Always will be.  The heroism has been transformed over the years from the invincible, immortal nature that a heroic father has through the eyes of his son, to a more realistic, human version of a hero.  For many, I can imagine that this movement from invincible to human versions of a father could be a bit of a let down.  For me, the heroism of my father has just grown and grown.

Dad is a doer.  He can make anything work it seems.  When I was growing up, I would work on a car or be making something, and I would come to a point where I might have needed a hand.  I could have worked it out eventually I guess, but I would go and get Dad to help me out anyway, just because I liked working with my Dad.  I am still growing up, and I still want my Dad to help me out doing things.

People often say that I have a very diverse range of skills and interests.  Well, this comes from Dad.  He has worked as a house mover (not removalist, actually putting houses on trucks and moving them), silversmith, worked for an engineering firm, became a theology student, pastor, builder, farmer and a whole host of other professions.  He has been the shaker and mover to get schools, churches and retirement villages built and operating, he looks at the impossible and gets it done.  My perspective has been established around the mentality that everything is possible, because I have seen Dad do it.

Dad has remained strong and consistent all the years I have known him.  He does anything for anyone, and does it well.  Dad was always around when we were growing up – something I will always be thankful for.  Anytime I needed Dad to help me with anything, all I would do is ask and he would drop everything he was doing to be with me.

Now that I am mid-thirties, and he is mid-sixties, very little has changed.  He still drops anything to help me out, still is the strong Dad I knew as a kid.  He still builds, works silver, farms, leads churches, Grand-dads etc with an amazing level of energy.  He has been well looked after, and he looks after others unbelievably.

If ever there was a benchmark for generosity, Mum and Dad are it.  They have poured their entire lives out for others, giving generously their time, skills, money, belongings and love.  We are the ones who have benefitted mostly from their incredible characteristics, not necessarily materially, but in how we have learned from these aspects of their character.

And then there is Mum.  No one has a Mum like ours.  Where Dad is the doer, Mum is the lateral thinker.  And when I mean lateral, I mean Mum makes Edward de Bono look like the God of Linear.  Mum will see solutions in problems where people just see problems.  Not to say Mum’s solutions don’t create their own set of problems, but that is not the point here – the ‘solutions’ over the years have brought us much joy, few minor injuries, and volumes of stories that need to be recounted by various independent witnesses to be believed.

But aside from that, Mum has not stopped making our world the best it could be since we were born.  Our dwellings were palaces because of her creativity and passion for hospitality.  There was never a time when there was not enough food on the table for us or whoever got invited over at the last minute for lunch.  Mum would be able to take whatever ingredients ‘Ready, Steady Cook’ could throw at her and whip up an absolute banquet.  And at least one of the dishes would turn out to be her famous baked potato with corn, bacon and cheese delights.

Mum’s passion and main focus in life has been to ensure that us kids had the best we could have it, and she not only succeeded, but has started a legacy that has already continued with my sisters’ families.

I am in awe of my Mum as I am my Dad, and together there seems to be nothing that is impossible.  They have given us the stability, opportunity, passions and example that have been vital for our wellbeing and outlook on life.

So this is a tribute to you Ma and Pa.  You know that my presents these days are usually word-based, rather than a new electric drill or stab-mixer.  I can still get you these if you like.  Words of affirmation are free, but they cost more and are often difficult to cash in.

Much love,

Cambo

Tomorrow morning I will be having a bone density scan.  Nothing intrusive, just a bit like an x-ray really.  I haven’t had one for a while.  My results last time placed me in the 26th percentile – which is pretty good for a 98-year-old (long deceased).  Not flash for a live 33 year old.  I hope my results are a little better this time around.

I am so overwhelmed by the great things happening in my life.

Last Friday was tough, sure, but a peace has settled in over the weekend and I have no fear whatsoever.  The underlying grief is still there, but that is something to take hold of to add to our reality authentically so that we can empathise and connect with the brokenness that surrounds us on levels not possible otherwise.

I have everything going for me at the moment.  Incredible family, incredible friends, an incredible medical team and an overseeing Creator who is very much in my situation, not standing by.  More and more, my predicament and the predicament of others I meet leads me to a deeper understanding of the  bigger picture, the one where I am thankful for the Hope I have, rather than bitter at this temporary discomfort this life holds at this time.

More than ever, the suffering I experience, and that which I see around me, leads me to a deeper understanding of my need for a saviour – not from my sickness, but from the bigger brokenness we experience in this life.  As I have said for many years, if the brokenness of this world wasn’t so ugly, riddled with grief, unjust or painful, we would have no need for a saviour – a caretaker to mend the little things would do.  Our deep sense of loss that we feel when unfair things happen get covered up by another ‘unfair’ version of restoration through Grace.

What I hope for is this unfair restoration.  A broken body to be restored, countering sickness.  An eternal relief from the physical and emotional destruction – but preferably the restored body at this time!

I have got it good.  Really, really good.

My body is so very sore, all the time.  My hip freezes up with pain often, I felt dizzy all day yesterday and today, and my whole body is in constant discomfort. I want to see if I can get rid of this naturally before my next blood test in 3 weeks.

I am very tired, both emotionally, and for having some sensational late nights.  I just want to be able to move properly again, not be in pain for the rest of my life.

Oh.. I don’t know…

It started well.  I had crumpets with peanut butter and honey.  Then pretty shortly after that it went down hill rapidly.

My appointment with Dr Brad was around 9.  To be honest, I was going to be floored if the results were clear.  I know my body better than I ever have, and I know when something is wrong.  I have been waiting for the pain in my ribs to go away for a month now, but they haven’t.  And I know what pathological pain feels like.

It was great to see Dr Brad again, I miss him for all the wrong reasons, in that I only really get to see him if I am unwell, or at least under observation.  When I miss him, it is because things are good and I don’t need to be at the clinic.  After the brief catch up, we went through my results, and as I assumed, it’s back.

My indicators are not high (kappa light chains 44), but a damn sight worse than the 6.6 I had previously.  So it indicates that there is active cancer in my bod again.  It is not too bad, in that there is no traces in my whizz.  Chances are it is just in my rib cage.

Dr Brad requested a CT, and I was able to get in within an hour or two.  Walked in, cannulated, injected with contrast and scanned.  Within a couple of hours I had the report.  Definitely a sus mass in my ribs, evidence of previous myeloma scarring, and now some nodules in my lung.  My spine is a mess,which explains why I wake up in excruciating pain every day.  No lesions there, just a whack-load of damaged vertebra. Spinal cord ok.

So from here, I will need to have a biopsy under CT guidance.  I hate these.  There are few things I enjoy less than being fully awake while they insert a rather large cork-screw or needle into your bone to take a core sample.  It punctures the skin, then they push it through the bone wall, and when it is already painful to touch, I find it very difficult to think of running through the lush mountaintops during spring.

I am lined up for another course of radiation, and then may be on a chemo trial that will be for  a year.  Great that it will keep me going for a year hopefully, but living part time in a hospital and felling like crap all the time is no fun, contrary to popular belief.

I held it together till I started to walk out of the clinic.  Then the sunglasses came down, and the invoice went over my face as I walked back to the car through the hospital, weeping like a 36 year old guy who had just been told his plans for the next year have just been screwed over, again.

The aesthetically challenging part was the report on my spine.  It is a bit of a mess.  Damaged bone, twisted, and not as strong as it should be.  My Thai massage options have closed completely.

The good, well, that will  come out in due course, I hope.

Thanks all for your loving support.

Here we go again.

I am desperate to stay in this life, more than I have ever desired before.

Let me stay longer.

The physical loss is sometimes obvious, sometimes not so. The hip still gives me constant pain. There is not a minute of the day or night where I am not in pain – very severe in some cases. My back also constantly hurts, and the general pain I feel is all over my body – it just doesn’t go. I am not complaining, rather just stating for the record, but I really hope I can get back to some pain-free life without drugs. I have been off the narcotic painkillers for about two weeks now, though I still wear patches, no tablets. My rib concerns me. A month now and the pain of a fracture is still there, for whatever reason.

I watch people walking and running, riding and jumping. It almost hurts me to watch them do it, as if I feel that they must be feeling the same pain that I am, but they are not. I have taken my mobility before this year for granted. When every step is painful, there is no way to escape the memories of what has happened.

I am an uncle again, to an incredibly cute Harrison. Going to visit Carms and Harrison in the hospital the last couple of days has been an ordeal. I felt like having panic attacks as I walked through some familiar corridors where I have had procedures. The smells, sounds and commons sights in hospitals haunt me. I feel like I am going to break down in tears still when I walk back into a hospital. Terrible feeling.

The underlying grief has not left, and I am not being pessimistic when I say I am not expecting it to. I don’t even know how I would feel if I didn’t feel any pain – I might still have this constant sadness mixed in with the joy of living. I certainly have had times recently when the sadness has outweighed the joy, and those times are really very difficult. It feels like a gradual death, rather than one that comes swiftly. I feel I have died about 20%, so I grieve the death of that portion of me. This exists at the same time as my happiness to be around.

So I am hoping for some gradual distractions to take my mind off what has happened. Things to make me not feel the pain, new experiences to create a new life, and doing what I can to use the grief to deepen my understanding of others’ lives in their difficulties. Not long now.

But whoa nelly rebuilding is tough. I have high hopes that my body may return to a state where I am not in constant pain – that is one of the main things at this time. I finished taking painkillers yesterday, and I am hoping that a nutrient course I will be starting next week will help my body recover. My hip is still the most painful part of my body. I feel it is not skeletal, which is great, but the muscle or ligament damage is significant, painful and not getting better. There are times where I am glued to the spot I stand because I can’t move from the excruciating pain. Whenever I see someone walk, run, or do anything that is involves physical mobility, I still look at them wondering ‘How can they do that without being in such pain?’. I am embarrassed about the chunk of hair missing on my head and so much damage has been done to my body through treatment it has changed my life forever it seems. I still hope that I will be healed in these ways too.

I saw a documentary the other night on a state penitentiary in Georgia, USA. It followed one man’s story how, after 20 years of being on death row, he received a reprieve less than 3 hours before his execution. As he was told the news, his legs collapsed, and he could not walk – he was an emotional mess, as you would be. He was then allowed to live in the General Population section of the prison. He had not been around so many people in 20 years. The realization hit him as he took his place in his new cell block that although he was saved from execution, he was still facing a future of incarceration without parole. The last comment of the doco was how thankful he had been given a second chance of life, but given that his existence was still incredibly difficult, part of him wished it had ended at the execution room.

I grieve for what I have lost, but at the same time I am grateful for what I have been left with. Within me, there remains much deep grief that I can’t bear to talk about, and it disturbs me to think about. My goals for the future include the necessary decision to rebuild, move on, recover and not let the difficult realities of my situation overcome the value of what we have in this life.

One of my ribs is on my mind. It has felt fractured for about three weeks now, and has not been getting better. I can’t remember knocking it, and it feels pathological, so whenever these things happen it sends my mind into a spin – try as I might to suppress it. I am not ready for another battle – really not ready.

In December last year, Libs and Carms accompanied me to see Dr Brad, and I was not feeling at all well. I was still in a lot of pain with my new hip, and I was at a very low point. To make things more difficult, Dr Brad and I were signing off on paperwork to let my employers and superfund groups know that, from a medical perspective, I had less than 12 months to live. Things were not at all good.

It was a very tough time, for every aspect of life for me had crumbled, and now it seemed like the approaching Christmas would indeed be my last. Not that it is all about making it to the next Christmas, but there is a lot not said at events like Christmas, birthdays, etc in regards to it most likely being the last one. I was really beginning to feel the overwhelming feeling that I had lost this fight.

I felt completely down, completely unwell, completely sore, and completely exhausted. The reassurances that I had been making to my family and friends that I would not take my life stopped that week.

About a month and a half later, I was walking back from a gig I had just seen and was feeling so distraught and alone, even though I was surrounded by great experiences, family and friends.

I was praying that night, “Father, I have to believe things will get better than this. Father, I have to believe things will get better than this. Father, I have to believe…” . I kept on praying this over and over, as I limped home weeping uncontrollably.

I made a very clear and definite decision that night, and told God that I had now had enough. It was a very easy decision to make at that point. It had now become obvious to me that the most caring and logical thing I could do for myself was to take my life. I hate to say it, and it wont make sense to most, but it was a very easy decision to make. I knew that the enormity of the grief, physical and mental pain that I was in at that time, and had experienced for so long, had taken its toll, and I could no longer live. It was time to go.

The only thing that I was sure of was that there was hope that things could get better. What I wasn’t sure of was if they would or not. I told God that I would live in this condition only 6 months more, and that was going to be a push as it was. I had my exit strategy worked out, and the day was going to be after Ma and Lib’s birthday, and before Dad’s, so that it didn’t land too close to any other event or anniversary. The final week was locked in, and as a few months went by, I decided it would all be over by the end of July.

Today, my mind is as far from that place as you could get. A miracle took place a few months ago, and my life has turned around completely. This is a brief intro to a topic that I haven’t talked about with but a few people. There is a lot that went on during this time in my life, and of course for those around me.

Today, the sun was out, it was perfect weather, I was at a wonderful wedding for a wonderful couple, and sat at the banquet table with just the most fabulous people. The reminded me how good we have got it, in being able to share in each others’ lives, bless each other, and make our time on this earth vibrant and rich. This was the perfect day to celebrate the simple fact that I was rescued from the grave, both by disease and by choice. I have been thanking God all day saying, “Father, you are good to me, you are so so good to me.”

But now…!

It seems that a completely new life has begun, but the most amazing thing is I get to keep my family and friends – this is the best deal ever! I cannot explain how utterly overwhelmed I am at God’s goodness to me. I have said it before I know, but whenever it rains, especially with thunder and lightning, I feel God’s power like never before, but with Him being totally jovial about the whole thing. He knows it makes me incredibly happy, He knows I love walking in it, He knows I love the smell and the sound of it. Its like He knows how incredibly good I have it, and He knows how much He has given me, then He just decides to keep on bombarding me with things that I love.

I am looking forward to having a family one day. I have been spending a lot of time with my nieces and nephew – I love them, and I really can’t wait to have children of my own. I have also been spending time with friends from China, the Tapleys, and their boys. I love these guys as family too, and I would love my kids to turn out like them! I still don’t know how I am going to go with kids and mess though! I am going to be so pedantic I think, wiping their hands every 5 minutes, wondering where their hands have been as they put their fingers in my mouth, trying not to scream as they wipe their snotty nose on my neck etc. Apart from that, I crave to have a family of my own.

I look forward to sharing my story with others. It has been a big deal. A big deal for me, my family and friends. There has been a lot to learn, and a lot can be shared. It would be remiss of me to not help others through circumstances that I have learned so much from.

I look forward to my work. I love education, working with the people I work with, developing ideas and being creative. I feel I have got a great mix of all these things at the moment. I couldn’t be happier.

I look forward to spending more time with family and friends. They have been my harbour in the tempest. I love like I have never loved before, and feel loved with the same intensity.

I look forward to having too much to do – I get so excited about great things that are happening. I can’t contain it most of the time.

These are just a few of the things going around my head at the moment. It is good to have things to look forward to, rather than thinking about things I was going to miss out on.

So thankful.

I have only one prayer at the moment, one focussed, repetitive, honest, intense prayer, and it is simply, “Father you are so good to me, Father you are so good to me, Father you are so good to me…” – It just goes over and over, and you can hear the smile in my voice as I say it. I am just giddy with an overwhelming sense of my Creator’s goodness to me, it is bottomless – it hasn’t stopped. Just when I think it is about to run out, or when I think I have had my share, it just keeps on coming. Then when I feel like I can’t take any more… I get pummelled with more. That is the nature of it.

I am in constant disbelief of how good I have got it. I can’t even go into detail about how good things are at the moment, because it would sound like I have more than my fair share of good things. But I do.

I have the best family in the world, amazing friends, I have had the privilege of sharing a significant part of my life with an incredible wife, phenomenal support from people I have never met, I have shelter, food, jobs I love, health, clothes and ugg boots. I wake up with the least amount of pain I have had for a long time. I have had the privilege of teaching the most amazing group of human beings a teacher, or any person really, could wish for being a part of. I just have it so, so good.

And I know what I am talking about. I have the authority and confidence to say that it is God’s goodness, because I know what He has rescued me from, and I know what He has rescued me to. The darkness that I have experienced is inexplicable. It is not like anything I would want to experience again, nor for it happen to anyone else. I can say that I have been to places that seemed hopeless, yet hope proved itself worthy of clinging to, worthy of retaining its name, worthy of using in sentences where all other sentiments had resigned. Now, my life has had such a complete change, in every way possible, and it is beyond human explanation, beyond what is humanly possible to achieve, beyond what a logical mind could reason.

I have been a part of something so profound, so incredibly real, that it has left me gobsmacked, speechless, lost for words. The upside of this predicament is that I haven’t been able to shut up about it for the last few weeks. The people who I have run into during the day get the 5 or 10 minute version. I give them the rundown of what has gone on for the last 3 years. They have little chance to escape, but usually they are as speechless as much as I am speechfull, if I may use a made up word.

I know whatever happens in my life from this point is a miracle. If I go and buy a litre of milk, it is a miracle. If I ran out of petrol on the freeway yesterday, hypothetically, it was a miracle. If I have to have that same hypothetical vehicle towed because it broke down and I end up telling the truck driver my story, it is a miracle. If I get up in the morning bright and early, it is a miracle – but that one always was really.

If I do end up tripping over my shoelaces and land awkwardly on a forsaken pin cushion, inflicting a wound that gradually became infected by a species of bacterium for which no antibiotic existed, or indeed if cancer returned, and I was fatally affected, I know that already many miracles have taken place in my life, especially in the last 4 months. I would die knowing that my Creator has been so good to me, so very, very good to me. I say this, not because it pleases anyone around me – that accomplishes nothing – but because I can’t stop declaring it, to others, and to myself.

It sure beats the prayer only back in April I think, where my statement to God was, “Father, it must get better than this, it must get better than this…” This is where I forced myself to declare the truth, even when my body ached with pain, and my mind was conducting its own wrestling match between wanting to die and doing the right thing by hanging around. Nobody knows the full story of what has gone on for me. Some people know a lot, but the whole picture is still a mystery to me, although it is slowly unfolding.

The treasure that I feel like I have received – the grace, the second and third and fourth chances, the provision, the support, the opportunities etc., have been given to me despite my failure to do good, despite my failed relationship, despite my shortcomings, despite my selfishness. Such is the nature of God. He longs to be gracious to us, He yearns to lavish goodness on us, He can’t wait to overwhelm us with stuff that is so individually tailored to give us the desires of our hearts. This stuff is stated in scripture, and I could just read it, but I can say it is soooo much better to experience it first-hand.

So I have no agenda in saying any of this. It is just oozing from me at the moment. I do not have a sponsorship deal with Heaven, nor do I care about impressing anyone by saying what I say. It is just naturally spilling out as a minute taste of what is going on in my heart and head.

I am so thankful for each and every one who has been praying, thinking, supporting and loving me and Libs and my fam throughout this time. I am so humbled by such loving people, selfless people, people who have taught me depths of human character whilst seamlessly demonstrating God’s character. It has been one incredible journey, as well as many incredible journeys.

There is going to be more to come. For the first time in a long time, my head, body and spirit want to participate in every part of this gift of life by making every breath, every contact, every event and every connection with another, count.

I want to take whatever opportunities to tell people what has gone on in my life. So if I get the chance to speak in schools, churches, cancer support groups, nudist colonies, youth groups, you name it… I will be there. If you want to come and meet with others who are also keen to understand more about our Creator and us in relationship to Him, I can’t begin to express how much I have been supported and encouraged by friends at The Mission. We meet on a Sunday arvo at 4 in North Perth Town Hall. If you want to hang with real people who are not interested in mediocre faith, then come along.

I have much more to say.

It is about 2am and I can’t sleep.  It is raining, and I am snuggled in bed warm and comfortable, although a little insomniatic. I just feel incredibly content and overwhelmingly happy (the English language can be so restricting at times).

I had a great day at work today.  I love being at Uni, and the Education Faculty of a University is probably one of the most powerful and influential centers of our society.  If you can influence a student teacher for the better, they can influence their classroom students when they have their classes.  I have about 40 teachers in my classes, all of whom will have roughly 25 students next year.  In two degrees of separation, about a thousand kids can be affected by the actions of us as teachers.  Quite a privilege. Quite a responsibility.  Important to get it right.

It has taken a week to settle back into tutoring, I was a bit rough at the start, but now I just love it so much that things are flowing a lot better.  One of the main reasons I left mainstream teaching was due to outcomes-based education that has sucked toilet water since its inception in our education system.  After many passionate discussions with principals, colleagues, university lecturers and some colourful letters written to education ministers regarding the manuristic basis of outcomes-based philosophies, I am teaching pre=service teachers how to pretend to use it, knowing that it is now being phased out. Hallelujah.

I have constant reminders that I have the best friends and family that I could ever have hoped for.  I am thankful for them everyday, and thankful for the many who have prayed for me over such a long time, or supported me with encouragement.  I feel it would take another lifetime for me to show the extent of my gratitude for everyone who has seen me through these years, but I will use this lifetime to convey what I can.

I can’t shut up about my story.  I tell people what has gone on in my life, and tell them with excitement and not an inch of doubt about how God has stepped in, how friends have stepped up, and how family have stepped along.  I feel I can talk about suffering with some sense of authority.  Not that I have experienced an extreme suffering, but enough for me to articulate to others that the presence of suffering in this world doesn’t prove the absence of a loving God, but rather highlights beyond a doubt for me how much we need a loving God in this world – a Saviour from this brokenness.  The love and support that I have received from friends, family, and people I will never meet illustrates just how severely God created us in His image. These few examples need more than a sentence to explain, but their truths exist for me stronger than ever.

So I listen to the rain tonight in the wee hours of the morning, grinning.  Rain is what God has often used to proclaim His presence to me most clearly over the years.  Growing up in Albany, where drizzle seemed constant.  Experiencing the almost daily thunderstorms in the Blue Ridge Mountains over 3 summers in the Carolinas.  Feeling the powerful deluges of the wet season in Darwin.  There is something about the rain that puts me at peace immediately.  Having lightning shock me through the ground during a electrical storm whilst drenched and on the top of a mountain back in 1996 would be an exception to that peaceful feeling – but it was memorable, all the same.

It has just gone 6am, and I am watching an incredible sunrise while on a flight to Port Hedland.  A producer, cameraman and I are spending most of the week filming a 20 minute tutorial/documentary on one of the Indigenous languages of the Pilbara region of Western Australia.  It is quite a privilege to be coordinating this project, as many of the Indigenous languages are dying out, and will continue to do so unless our generation can capture as much as we can in any form of media, in addition to the passing down of the languages from the elders.  It will certainly be an interesting week.  We are working closely with one of the primary schools in Hedland, filming lessons taught by one of the elders who teaches at the school.

I have been incredibly busy in the last month.  It seems everything has happened at once, and everything that is happening is great!  Somehow, I have ended up working in four different jobs, as well as spending one day a week doing my own projects.  The job that I am working at for this week is as a project coordinator for an organization called Wyemando (www.wyemando.org.au). This involves coordinating media projects that preserve and teach Indigenous languages in WA.  I usually just work one day a week with this organization, but we are filming a major project this week and I will take a break over the next month while it is being edited.

The silver work is quite busy also.  Dad has been fantastic in getting the studio up and running and helping me out with the orders when I run out of time or energy.  There is a short YouTube video on the site that shows a little of the process of making the silver items.  You can see it at www.harrisandson.com.au.

Job number three I have been working has been with Edith Cowan University as a prac supervisor, or University Colleague as they call them now.  This just involves overseeing pre-service teachers as they do their teaching pracs in primary schools.  I am based at Joondalup which is about half an hour away, but it is a job that I really love and is very flexible as I work whatever hours I want.  I try and do this one or two days a week at the moment.

Job four is also at the Uni, and I start this week when I get home as a tutor at the ECU campus in Joondalup also.  The unit is a preparation unit for fourth year education students to get them ready for their pracs.  It works out perfectly as I have two tute groups in the same afternoon and can do my supervising stuff in the mornings.

In the time I have left over in the week I have been working on my own mini-documentaries and education website.  I am hoping to launch it all in about a month.  There is still a lot to do, but I am really enjoying it and learning a lot as I go.

Health-wise, the most significant event in the last week was that I came right off my painkillers.  This has been a mammoth task, and I have found it incredibly difficult to break the dependency, both physically and mentally.  At my worst, I was losing count of how many tablets of Oxycontin/Oxynorm I was taking, but it got to 300- 400mg a day on some days, and this has been going on since November last year.  Last week, I got down to 30mg a day for a few days then stopped.  My body got exceptionally angry with me, causing all over body pain, acute hip pain, muscle cramps, sweats, anxiety and swings into depression.  I recognized the depression more as a result of the withdraw, as usually over the last couple of months I have been in really good spirits.  Previously, I used to be able to feel within a matter of minutes when my body was low on painkillers and I would have to leave the shopping or work or whatever I was doing at the time before I became hysterical in public.  On a couple of occasions, I got caught without the tablets and it was never pretty.  It all got to a point where I almost had a personal relationship with the tablets.  I was going to be ok as long as they were with me.

And they were.  Dr Brad hadn’t seen the results before I went in for the consult and so he had no pre-warning that they would once again be completely clean.  No cancer detected anywhere.  “When do you finish chemo?” he asked, expecting that I was still on chemo.  “I finished a month ago”, said I with a grin.

All my results are completely normal – everything – kidney function, calcium, platelets, haemoglobin, blood counts, proteins, blood red, urine yellow – everything was completely normal for a normal healthy human.  This is the first time in 3 years that I have had normal results.  I feel great, I am happy, I have an intense desire to be and stay alive.  This is the complete opposite to how things were only 6 weeks ago.   This, indeed, is miraculous.

God has done the amazing, the impossible, the unexpected.  I declare that all things that may have contributed to my healing have been wrapped up in His goodness.  Medicine, prayers from the persistent, one-off prayers for healing, the power for healing in God’s Word, the encouragement and care from friends and family, the provision of people who have intervened in my life to show hope – they have all been a gift from God, nothing less.

From here, I don’t really mind what happens in some ways.  I know that a miracle, or many miracles really, have taken place.  Even this weekend, I have been able to come off my painkillers with relatively little shutdown physically and breakdown mentally as has been the case before.

There is much more to explain, more to understand.  But for now I am happy not to worry about that, and just be thankful, plan to have a future, live in the now, and get excited about not being sick anymore.

There is no way this life could have turned around this quick without the swift workings of a loving Creator.  Of this I have no doubt.  The prayers requesting God somehow be glorified through all of this have been answered, and I feel there is more to come.

If this third lot of results come back all clear, I feel like I will be able to rest a little more in the knowledge I am not sick anymore.  After three years of getting news that has not been at all good, it is difficult to be able to rest in news that doesn’t come with a ‘but…’.

There has still been some very difficult things to get through this week, some really sad stuff, but even in the midst of that, I feel that life is progressing rapidly in an upwards direction.

May is birthday month in our family, where there are quite a few born in the month, so lots of celebrating and thankfulness for the gift of life.

I have really been enjoying my work with the Wyemando Bequest Inc, as I project manage the production of  a language and culture DVD for Indigenous kids.  We will be filming the tutorials in they Nyangumarta language of the Western Desert region of Western Australia – the Pilbara.  The website can be found at www.wymando.org.au

As from today, I am officially employed by Edith Cowan University as a Uni Colleague, doing prac supervision and possibly some tutoring as soon as positions come up.  It has been on my mind for a while, and last night I got an email offering as much work as I want, on a very flexible timetable.

I have also been able to fit in plenty of doco filming this week.  Really enjoying that.  I have found a car to replace mine that was written off in the hail storm last month.  The silver work has been picking up too with another retailer in Sydney taking on some stock and some good orders through.  It has been great working with Dad up at the studio in York.  He usually finishes all the things I start to do when I run out of time – I like this set up a lot!

My health continues to be good, I feel better than ever, and my hip is feeling better all the time thanks to intense physio and pilates.  The last hurdle I have is to get through my painkiller dependency.  This is proving to be extremely difficult, and I really need to come off them soon – they have been flowing through my veins now for nearly six months solid, and I am sure they can’t be good for you over long periods of time.

So I am so thankful for where I am, how I am, and what I am.  The space between how I feel now, and how I felt a month ago is like the Grand Canyon.  If there is a happy ending to this journey, I feel it is just about to begin, and I feel it will go for a long time yet.

It has taken a psychiatrist only a session or two to speak truth into my situation, and I have been released from incredible guilt, oppression and made my future look tangibly hopeful, not just a belief that things can get better, hopefully, maybe, one day.  Possibly.

I feel that they are better now.  I still deal with a deep sadness that my marriage has gone, but there has been resolution in this decision, and it has been turned into a healthy resolution.

It has been a very long time since my mind has felt this freedom, so I hope it will do wonders with my health also.  I am sure that my health has taken a real beating while my heart and head have been struggling to survive.

For me, it is going to be an exciting adventure to see how long I can remain on this earth.  I have found peace in a lot of things recently, and I am happy with my lot.  I don’t feel like life would be unfinished from any point here on.  I haven’t been able to say that or think that for a long time.  I am loving the possibility that my life is about to begin again, with more freedom living to be experienced.

This has been the most significant battle of my life, even over the cancer – I can’t explain it fully, but the resolve in my head has been the miracle that has defined a real turning point in my life I feel.  I just hope the body joins in the party.

My body is still catching up though.  If there is something I would love continued prayer for it would be for my nerves.  One of the side-effects of multiple myeloma is what is called peripheral neuropathy.  This sensation is like a burning pins and needles in the feet and hands usually.  Great during winter when you need warming up.  It is also caused by the medications that I have been on for chemo.  So you are damned either way.

The downside is that peripheral neuropathy results in permanent nerve damage, and that seems to be getting worse.  I am losing feeling in my fingers and toes, making it very difficult to read Braille for a start.

I had a lot of nerve damage after my stem cell transplant, which come to think about it was two years ago a few days ago.  Now, the nerve damage continues.

I have my last chemo shot tomorrow, hopefully forever.  The end of this treatment should make things better, but I want my feeling to be restored.  All things are possible.

I have been advised to stay on my painkillers (yay) which is a big relief in one way as they do get me through the day emotionally.  But once again, the side-effects are hindering to say the least.  But until I have some stability for a while and until my other treatments kick in, I will be relying on them as per usual.

A friend who has had 59 operations to save her leg after a car crash years ago said that coming off these painkillers was the most difficult thing she has done.  I can see why.  When your mind is having to deal with medical and personal traumas, and you have a pill that can give you relief from that 15 minutes after swallowing –  the decision not to take it defies logic and expectation.  Becoming an substance abuser, in my opinion, is a process that follows logical decision making, making the wino in the gutter one a temporary genius.

The torment in my head has been broken.  It is truth that sets us free.

To go from depths I can not describe to a feeling of freedom almost forgotten is worth celebrating with the rest of my life.

A counselor who I was seeing last year spoke a blessing in my life and declared that all things unsettled would come to pass before I died.  I can say that all things are settled now, but it did not mean then I wouldn’t live for a good 50 years more as my pastor is praying.

Either way, it is well with my soul I feel.  It is time to live now, dying can come later and I feel released from the pressure of time to find peace before that time comes.

There may still be a way to go to clean up the mess of the past, but I do so knowing that the end result is not at all absent of goodness and mercy.  They shall follow me all the days of my life.

Peace be with you, and also with me.

As I mentioned before, my physical body is still taking some time to catch up with the news, so it remains in pain most of the time.  This time will pass, I believe.

I had chemo yesterday, in keeping with Dr Brad’s desire to finish off the cycle that I have started.  I woke this morning still quite sore and having some sweats.  Once I was good to move, I headed down to my friends Geoff and Ruth who run Houses of Healing.  We spent the time just in worship and prayer.  Was good.

Geoff told me that they prayed on my behalf during the week at a conference that was on up here in Perth by a guy called Graham Cooke.  I have listened to a lot of his stuff about 6 months ago that was really encouraging.  Bummer I missed it, but thankful I was prayed for at that time.  I am not sure what precisely it was that has given me these great results – prayer for healing that I went to with my pastor and sister, the readings that I have been doing praying God’s word over my body, prayers on my behalf, etc etc.  But I have reason to believe that my body changed just in this last week, as I noticed an absence of some symptoms specifically in this last week.  Should I say, I noticed the continued symptoms over the last month except this last week.

So not sure, but don’t really care at this point.  I feel I need to live out the belief that this has been a significant time of healing.

Yesterday, when I went to get my chemo injection, I asked the nurses at Haematology if I could get a printout of my results.  These ladies have been an amazing support for me over my entire journey. I told them a month ago that if I got better, it would be because of Gods word being relied on for my healing. The were stoked that I got the results I got, and were gobsmacked that it has happened.

My results clearly show my blood and urine tests from a month ago, where indicators were found in my blood and urine, to what they were now, after the month of praying Gods word and having prayer for healing a couple of times.  Last month’s results say clearly ‘D’ (- detectable), Abnormal, and proteins present in my whizz.  My levels in my blood were 8 point something (still good – normal range is 3.3-20 roughly).  My protein level in my blood is now 6.6 (the lowest it has ever been), and now the report reads ‘ND’ (not detectable) and Normal.  Ultimately, they read as any healthy person’s results would read.  Go figure.

So it would be rude of me to not live in light of these results, though that is harder than it sounds to do for reasons I may go into later.

For now, I yearn for my physical body and my mind to catch up with my good news.  No pain, and no pain respectively.  It gives me hope, certainly, as there was a lot riding on these results.  I was ready to go into this last consult on Friday to tell Dr Brad that I had had enough treatment.  The whole, ‘enough is enough’ chat.  It is the equivalent to switching off life support, it just takes a bit longer and there is less beeping of the machines.  I told Carms on the way into the consult to be prepared to hear that conversation, and she was, as much as you can be.

So it has been a significant turnaround.  Timing was impeccable.  We didn’t talk about much treatment at all, apart from coming off chemo completely fairly soon.  That is a miracle.  What you have read bears testament to it.  If the cancer comes back tomorrow, bah humbug – a miracle took place last week.

I had a consult today with Dr Brad, to get results from my bloods and urine tests earlier this week.  All my results are perfect for a healthy person, and there is no evidence of active cancer either in my blood or urine.  Something has happened between last checkup and this week.

I went in to the consult with a shop-a-docket list of questions about future treatment.  We discussed none of it, as there was no point.  It seems we don’t need to talk stem-cell transplant or further chemo at this point.  The only thing we did discuss was dropping the chemo I am on now down to nothing over a few weeks.  I asked if I could stop now, but Dr Brad felt more comfortable finishing this cycle off to make extra sure.

Whatever.  I think healing has happened.  I don’t know what to do now.  Still in shock a little bit.

Based on past experiences, the natural tendency is to be skeptical and cautious.  But I think I can go ahead and live with the belief that I am not sick.  See what happens, or doesn’t happen.

Since the last lot of results, I have been praying believing that there is power in God’s word to heal – as it says there is.  Though I don’t think there is a formula to conjure up healing, the absence of cancer markers indicates my body is becoming less dead.  What happens in the future is irrelevant in some respects – these results are significant.  I could not have got a better report.

What happens next I don’t know.  Dr Brad doesn’t need to see me for another month or two.  I feel like I have been rescued from the grave, again.  Will write more later, I have some celebrating to do.

After the incident with being pinned to the bed the other night, I haven’t been in the house much.  I went to York one night to do some silver work, so didn’t get back down to the house until yesterday afternoon.  I invited my pastor Grant and brother-in-law Michael over to help pray through the house, to basically tell any presence it was time to go.

While we were praying up in the upstairs bedroom, where the incident happened, Michael had the sense that there was something that needed to be removed from the house.  He went over to a storage compartment in the roof and pulled out some bags of stuff.  It all belonged to the previous tenants (of which there were many, as it was used for short term accommodation).  In amongst the collection were two bags, both had the faces of demons on them.  They looked like showbags basically, but nothing fun about them.  So we took them outside and put them in the bin.

Once that was done, the house seemed to be free of any bad presence, and I got a great night sleep last night. Make of that what you will, but I have seen enough stuff to know that this stuff is for real, and needs dealing with when encountered.  Done.

Off to see Dr Brad tomorrow.  This consult is a biggie.  I get the results back from my bloods and 24 hour urine test (relax, its not continual, you are allowed to have a break).  I am not sure how I am going to deal with whatever result I get.  I have been getting my hopes up in some respects that I am getting better, hoping God has been tending to things while I have been praying specifically in the last month or so.  But my body doesn’t feel any different.  I feel like a broken spirit carrying around a heavy broken carcass.

It literally feels like there is not only a quality of life, but a quantity.  The saying ‘He is full of life’ seems to ring true in the sense that life feels like it can come in degrees.  At the moment, I feel like I only have about 20% of life in me, I am mostly dead, but the 20% keeps me looking alive, insists on air filling my lungs, commands the heart to keep beating and mind to function as best it can.

The other 80% is dead, but revivable (flashback to “The Princess Bride” where Billy Chrystal’s character informs Mantoya that the Westley is only ‘mostly dead’).  I have often thought that it is the Doctor’s task to keep me alive, but it is God’s task to heal me.  There maybe a crossover point that comes soon, or it may not.  But that 20% is hell hard to maintain, I tell you.

Click here for \”Mostly Dead\”

Tomorrow’s discussion will lead to some big decisions.  These decisions involve choosing lines of treatment that carry different degrees of risk and different levels of life-quality.  An aspect of the decision making process involves the question ‘when is enough enough?’.  If it came down to a purely physical decision, the answer would be to just keep on going until the body can’t take any more treatment.  My mind in it’s current state, however, has to work hard to choose life.  It needs to go against what it ‘feels’ like doing, believing that the current situation will pass and the future holds what is hoped for.

But then again, reflecting back on life, many significant hopes have not come to fruition.  In fact, they have ended up in catastrophe.  This is where the battle lies.  I hold onto hope, knowing full well that my situation may not get any better, that I may not see those hopes turn out.  I know that any hope I place in earthly things or broken people is not guaranteed.  They still remain as hopes, but I have learned the hard way that things don’t often turn out how we had hoped.  Sometimes, it is the most precious of our hopes that don’t turn out.  When our foundations have been based on hopes that don’t come to fruition, then we are up a small guano tributary without a wooden implement fashioned for watercraft propulsion.

What then?  Well, a re-establishment of hopes need to be made, but ones that are base on something solid, something certain, something Christlike.  The only thing that I hope for at the moment is for my body and mind to be healed.  There is no valid reason to continue whilst the discomfort of both of these elements undermine every good thing available in this life.  This sayeth the despondent heart.

The heart that goes completely against what the body and mind desire says to keep on going, squeeze every hour out of every day, make the body walk past its muscle ache, make the mind think it is alive again.

At this point in my life, I am unpacking boxes for the forth or fifth time over a year or so.  Each time I wonder, is this worth it?  Is it worth unpacking belongings.  If so, for what?  So that I can pack them up again soon, or worse, so that someone else must pack them up?

I keep getting told that this time will pass.  Yes, of course it will pass – it is time, and thats what time has always done, and always will do – it passes.  The outcome, however, is beyond any person’s knowledge and certainly beyond any guarantee.

At the moment, each hope I hear gets filed under ‘M’ for “Maybe, Maybe Not”.

I wrote the entry ‘Tired’ the night before last. It wasn’t a good night. I went to sleep reasonably early, and it had been quite some time since I had any tablets.

I woke suddenly in the middle of the night and was aware something was not right – there was just a bad presence in the room.  I didn’t see anything or anyone.  I was awake, and fully conscious, but I could not move my body at all, nor could I speak. I felt pinned to the bed. It was a terrible feeling. I tried to sit up, but once again, couldn’t move anything. I knew I had to pray out loud, but I couldn’t speak at all. I thought “I just need to be able to say ‘Jesus’ “.

After about 15-20 seconds I was able to say Jesus, and then I could sit up and prayed out loud. Whatever had kept me still on the bed was gone.  When I was praying, I was praying out of exhaustion and disbelief thinking, “What more do I need to deal with?”  Again, I questioned God as to why things continue to be difficult.  I thought I was done with my share of complicated situations.

Although I was a frightened when I couldn’t move or speak, the fear was gone and I eventually fell asleep again.

You would think that it would have been nice to have a nice day.  Well, it was nice this morning – sunny and warm.  I went to the hospital in the afternoon to have bloods and chemo.  While I was in Haematology, the sky went dark – really dark.  Then it started to hail.  It was like a plane landing on the roof.  Hailstones like golfballs.  I have never seen a storm so violent in all my life.  Long story short – this is my car that I bought last week.  When I left it in the carpark, it was sunny and warm.  I came back to see it like this.  Every panel has at least a couple of hundred dents, and the windscreen is cracked in quite a few places.  The funny side to the story..?  There is no funny side to the story.

It is hard not to be upset with you sometimes God.  No – a lot of the time.  The good things that happen each day are slammed by the reality of hardship and what feels like hopelessness.  Knowing you can do something to relieve people of their suffering gives hope, but you leave sufferers on stand-by, and they wait to find out if they are picked to be relieved of their suffering.

I writhe in pain daily, if not from my body, from my head.  I started this life pretty well.  Did the right things, behaved, kept promises, stayed good.  The onset of grief, confusion, sickness, and then a crumbling leaves me wondering why the hell did I bother trying so hard to be good – my life turned to rubble anyway.  Could it have been any worse if I had of stuffed up the first half of my life?  I don’t think so, from where I’m standing.

I still have hope, but I don’t know what would be worth hanging on for anymore.  The hope that I live for another six months – but for what?  More of the same? Please!  Just release me!  Do whatever you do to let me be free from this life, this mind, this pain.  What are you keeping me here for?

Yes I do thank you constantly for the good things, yes I praise you when things here are more than horrendous, yes I try to keep a positive outlook and yes I talk with you constantly, asking for healing, asking to be heard, asking for you to help change the direction my body and my mind are going.  What am I missing?  Is there something I have missed?  Have I missed a point somewhere along the line?

All I know is that I haven’t lost hope for healing, I just don’t know if I want it anymore, as death and eternity without all this is a far better option – unless you can show me otherwise.  I am sick of waiting to be healed.  So many people are praying.  What does it take?

You leave me hanging it seems.  You know I am tired of all this.  Really, really tired.

Tonight I spend my first night in my new place. It is really good to have a place to settle into. It is right near the other houses I have lived in here in the city, so I love that.

Yesterday I had a wake up call regarding my painkillers. I went to work without my tablets, thinking that I would be ok. By lunchtime I was a mess. I couldn’t write with a pen, I was shaking, my mind was all over the place and I wasn’t feeling flash at all. I had to get one of the guys there to drive me back to Rachel’s place where I had my meds and downed a few tablets. Within a few minutes my body had returned to its normal abnormal. It dawned on me that it was the first morning since November last year that I had not had at least 100 mg of oxy’s .

Just when I thought my body could do without it. Got to take it slower, which suits me fine because I still need them to get through a day.

For the last month or so I have been living on the farm out at York which has been brilliant. Apart from being a very relaxing place, Ma and Pa have poured out there generous care for me in every way.

Dad has also spent a lot of time converting one of the sheds into the new silver studio, and it is looking fantastic. We really just finished today, so it is all functional. Very happy to get that done.

The time up here has really been vital in getting through a very rough time mentally. I would say that only in the last couple of days have I seen some progress that has been positive. At this time I am also struggling to lower my intake of painkillers. They were originally prescribed for my hip pain, but that was back in October last year. I can hardly believe that I have been on them constantly since then, but I have, and my body has become very used to them. I didn’t need them for physical pain as much as what I was taking them to get through the day mentally. I still rely on them now, but I am lessening the dose each day.

At my worst, I would have had 400mg of Oxycontin in a day – but usually 200 – 300, depending on how I was feeling. I would say they have been a life-saver though. The times I have been at my lowest, I have been able to chew through a wad of tablets and capsules to bring me back to a place of respite in a matter of 20 minutes. On many occasions I have gone from painful hysterics to drowsy ambivalence thanks to these medications. I take them because they work.

Last week, I came across a book on healing that emphasises the power of Scripture, God’s Word. I have been reading specific verses over and over, believing that there is power in doing so. This is a big thing. I told the nurses last week that I believe that I am going to get better, and if I do, it is because God is healing me. My treatment regime has been halved, in that I will now only be getting one injection of the miracle chemo Velcade per treatment week rather than two. So if my body shows signs of improvement, it is unlikely due to the chemo. I told them to wait and see what happens.

I had a consult with Dr Brad a week or two ago. The options ahead include a stem-cell transplant with my own stem-cells (as I had before) but with other drugs in combination. I still have Velcade for a few months yet, but I don’t want to be on that forever. It keeps me alive, but I don’t want to be just kept alive – I want to be free from this disease – that is what God promises. I want to see this stuff happen. I believe it can, and I expect it will.

Mental health, physical health, spiritual health – I need a gym that takes care of them all.

I write this entry as a foreword for the one written a few days ago (below) that I didn’t put up at the time. It seemed like a list of complaints, pessimism, pity etc. but I realise that is just how things are at the moment, so it has gone up. But I have been challenged again in recent days to do my best to alter my thinking in the way I handle each situation faced and how I talk about them or process them.

The easiest option each time seems to be in letting the difficulties beat me. After all, it takes every ounce of energy, thinking power and will to fight against the negative thinking take me to death’s door. I do believe that the mind has phenomenal power over the physiology of the body, and it is a constant fight at this time to keep my body stabilised in health considering all that is going on. I know I need to do more than just stabilise my health in my thoughts though – I need to get better to give my body the best chance possible to live. I don’t stand a chance otherwise.

I still manage each day with painkillers and anti-depressants but I know this will only be for a time. Such prolonged amounts of time in tough circumstances can take its toll and narcotic intervention can have benefits. But I need to fight harder in my thought patterns if I am to get well, deal with grief, avoid mental torment and become productive in my days again.

Keeping a positive attitude is difficult when friends are dying, health is in constant jeopardy, my body is in constant physical pain, my personal life has been difficult and it seems like there is not enough time left to regain anything of worth. This is where I am hoping I can change things through how I perceive, process and present my situation (three p’s a coincidence by the way).

There is a massive spiritual element to this too for me, in that I don’t have the strength to do this on my own I know. The balance of putting the effort in myself, and allowing God to work in me is a tough one to understand.

3^rd March 2010

I can’t comprehend the enormity of the last month or so. Therefore, my attempts to record them will be feeble to say the least.  There has certainly been a wide range of emotions at play including despair, the excitement of hope and the seemingly endless mental torment that reeks havoc on my mind.

I realise my condition is placed in a Western, middle-class context. But to me, at this time and place, I have never had such desire to remove myself from this earth coupled with the hope that there is a God who longs to be gracious to us, yearns to show us his goodness and mercy, and wants to bring healing to our broken lives.

For someone like myself, who has the best medical care, a loving family and incredible friends, and access to every human comfort known, my difficulties seem miniscule almost. For each individual however, their circumstance can be overwhelming no matter how they compare to others’. Sometimes this is a result of our choices, sometimes it is what we get dealt with. Either way, it is how we interpret, process and respond to each circumstance that makes the difference.

In my head, I picture my life coming back together knowing that there is that hope in Christ – I have seen it before and am convinced God wants what is best for us – whether it is what we think is best for us or not. Then I see the opposite happen at times, or I make choices that contradict my beliefs. It is very difficult to make positive decisions when physically my body points to a future of difficulty.

In the last couple of months, I have gone through another set of breakdowns, resulting in shutting down parts of my life in order to survive mentally. Relying heavily on my amazing family and friends to keep me going has been life saving, literally. On many occasions I have seen and heard myself in such hysterics I have never witnessed before in myself. The torment in my head has at times been too much to bear, and only been helped by prayer or massive doses of painkillers to send me to sleep.

I have learned that there is a sound that comes from us that is reserved for the deepest expression of grief – a sound that is primal, uncontrollable, and involves silence as much as it does a combination of hideous groaning and shrieking. I wouldn’t wish it on anyone, either to endure personally or to observe. But I have experienced it on numerous occasions now. Each time it leaves my body without energy yet anaesthetised from the rush of endorphins, adrenalin and whatever else gets released during this time.

I am currently weening myself of morphine-based painkillers, which hasn’t been easy emotionally. I have used them largely for emotional stability, along with anti-depressants. I have become physically addicted to them, as well as mentally addicted to them. When I have an emotional breakdown , which has been daily at times, I have taken these painkillers to take the edge off the emotional pain. In the past, ten milligrams was enough to do this. Last week Libs told me that 10 milligrams would be enough to knock her out into a sound sleep, so my admission that my three-hundred milligrams per day wasn’t really scratching the surface for me anymore rang some alarm bells for her.

Cutting my dose down hasn’t been easy, and even last night, after numerous sleeping tablets, it wasn’t until I topped myself up with pain-killers that I was able to find refuge from emotional torment in sleep. It is a terrible feeling also when you wake up crying, and you realise that your body has continued to grieve even when you think you have been giving it a break with a sleep. That is just how it is at this time, for many reasons.

Two weeks ago today, my friend Tim died from complications post-surgery for a brain tumour. Tim and I became quite close since meeting about a year ago at the Chemo Gym. Having similar beliefs, we would often pray together for each other’s healing. He was the same age as me, was a doctor at Princess Margaret Hospital, and leaves behind his wife and 3-year-old son. I witnessed his gradual loss of speech in recent months, then the rapid loss of health post surgery until his death two weeks ago. It was confronting to say the least to see someone I had become close to go through those difficult months and weeks. I couldn’t help but think that could be me, will be me, will be all of us at some stage – I just don’t want it before my time, most of the time.

Amongst my closest friends are Keith and Christine who live in London. They looked after me when I was living there 12 years ago and became family. Keith has been battling lung cancer since early last year. It has been on my mind for some time to head over there to see him before he passed away. Not being able to travel safely myself, Libs graciously took a week off work and proposed she come with me to make sure I made it back in one piece. Within a few days of thinking about it, we were on a plane to the UK. We had a very precious time with Keith and Christine, as well as other great friends. It was, again, very confronting as I saw Keith being nursed so lovingly by Christine. His legs had withered away to nothing, he gasped for each breath, most things he ate would be vomited up minutes later. We continued to pray for his healing and his comfort.

It was really difficult to know what to pray for in that situation. Keith was as close to death one could get while still being able to walk and talk, but his discomfort was obvious, and both death and healing seemed as attractive as each other for relief. Again, as with Tim, we pray and pray and pray. Keith is well known for his faithful support of missionaries and he, together with Christine, has been an inspiration to so many. Countless people would be praying for him daily from all over the world, yet he is so close to death, and is in so much pain. I left Keith with the parting comment, “Whatever happens Keith I will see you soon.”

Both Tim and Keith have been faithful followers of Christ and had their hope in Him, yet they have still suffered under the effects of a broken world and broken bodies. The hope that they had, and have, is the hope shared by myself for my healing, for restoration in other areas of my life. It is so discouraging to see my close friends pass before their time, under such discomfort, under such frustration also when it seems like God is not hearing our prayers.

In the discouragement of what seems like a futile battle against a hideous disease, I still count it a privilege to be given such hope that I have in Christ. I know that God is able to heal me, in each area of life. But if he doesn’t I am assured that eternity is waiting for me and I am excited by that. Sometimes I wish it would come sooner than later, especially when things get tough. I admit that I don’t understand why people like Tim are taken before their time, or why it seems our prayers aren’t answered as we want them to be. Tim, like me, was constantly trying to work out God’s mind on his situation, I suppose mostly to work out what could be done to survive. The list of questions I have for God when I see him seems to get longer rather than shorter.

The London trip was a real highlight for me, just in being able to have a precious week with Libs. Any time spent with her is a life highlight. Always has, always will be. Shopping for shoes, eating porridge each morning, stumbling onto Buckingham Palace (“What’s that building there?”) and almost missing flights (which has been our custom) – all go down as being great memories packed into a short, spontaneous trip. I would do it again in a heartbeat.

Now, being back into the real world, each day requires decisions of how to handle each situation that comes up. I struggle with the reality that each situation has so many variables and depends on my health that is largely unpredictable each day.

As far as health goes, I have increasing peripheral neuropathy (numbness/nerve damage) in my back, feet and hands. This is largely degenerative and irreversible. My protein counts are still good, but I still have traces showing up in my urine, which is not a good sign. My concentration is minimal, largely due to large quantities of morphine. There is a cracking in my back, which is also not great news. Night sweats, muscle cramps, emotional breakdowns etc can also be affected by coming off medication.

For now I reside on the family farm in York, but will be moving back to the city in a couple of weeks.  It will be my 5th or 6th move over the last year, but hopefully the last for a while.

It doesn’t get much better than this, but I am still hoping it does.

Yesterday I visited a close friend who I met through Chemo Club.  We have been sharing our journey together over the last 18 months or so.  He is a Christian, paediatrition, father, husband, son, brother to list but a few.  We have prayed together and encouraged each other in the journey since the time of meeting.  Yesterday he couldn’t talk to me.  He is in a hospital bed in his living room and on pain medication only.  There is nothing medically they can do for him at this point. 

Same too for my friend Keith in London.  He treated me like his own son while I lived with he and his wife Christine (who treated me equally as amazingly) during my times in London.

There are others who are not in good health around me.  I have decided I can’t put myself in any other situation where trauma exists (yeah, I know, where does one go).

And there are other painful situations that go on at this same time.  Today I got to the point where I realised I have emotionally shut down and can’t cry anymore it seems.  A sympathetic protective response perhaps.  Or just pathetic, perhaps.

So just a note to say things will be quiet for a time.

There has been a lot to think about over the last few weeks, but mainly my thinking has been around my responsibility and responses to God’s promises regarding healing.  In the past, I have taken more of a passive response – ‘if it is God’s will I am healed, then it will happen – I believe He can do it, but whether He will or not, I don’t know.”

Now that is changing.  I haven’t been healed yet, and I wonder why.  I feel now I my response should involve an active commitment to God’s Word and promises.  I need to believe in the power of the word to transform and to heal.  I am needing both.  God’s promise to heal us from our diseases is given the same weight as his promise to forgive sin.  This is a pretty heavy relationship.  If I believe in him for the forgiveness side of things, and live in that certainty, I need to live in the certainty that healing is available to us.  I don’t fully understand it, knowing many people who are not healed, but it can’t stop me from acting on what I have seen God do, and what is promised.

At this time, I believe I will get my 70 or so years, or die a hopeful fool.  Better a hopeful fool than to have foolish hope, I suppose.  I know I don’t have the latter, as I would have given up long ago – this journey has not been worth it to this point as is.  I am not ruling out the possibility that I will end up disillusioned, confused or struggling with circumstance in the future, but I believe the option of God’s healing is real, and that hope is worth throwing myself into.  It sure beats watching cricket.

In all honesty though, this is one of the biggest challenge I have faced at this time.  For one to fight for life while they have lots to live for is one thing.  For me, I have been fighting feelings of wanting to leave this earth while medics try their best to keep me here.  My fight here is both to believe things will get better, and that the fight to stay alive will be worth it in the future.   My will to live at this stage is coming more from the promises that God can heal, rather than what I feel I have in my future that is worth continuing the fight for.  There must be a better way of writing that sentence, surely.

By all accounts, I should be loving everything, enjoying everything.  But I still walked home stating to God “Father, I have to believe it will get better than this”.  I don’t know what I am expecting anymore.  My expectations of myself, others and life have not been realistic or helpful, so I don’t know where to place my expectations now.  This is a pressure in itself.

Anyway,  I am too tired for this tonight, and the meds have kicked in right on time.  Best not write.

A simple decision for some, it has been a very difficult decision for me as I have considered so many factors.  I have been looking for a place that I can set up a bit of a studio and writing room, as well as having the option of sharing the place with someone to help out with repayments or rent.

The was a place I have had my eyes on for quite some time, an apartment in between two places I tend to hang out in, Leederville and the William St precinct.  To buy it would have taken any hint of spare cash in case I needed it, but given me a nice place to live.  Today I went into the agent’s office and said, “Alright, let’s do it, let’s write it up.”

“Are you sure?” said he.

“Nope!” sayeth I.

He then proceeded to talk me out of it, and I am most glad he did.  I decided instead to rent my sister and brother-in-law’s place in the area that I love, smack in between Hyde Park, all the cafe’s and music venues I love, close to restaurants and my favourite chemist.  All walking distance. Nice.  So I am completely relieved, it is amazing how much a decision made can bring peace.  I will sleep well tonight.

When one has been given a medical prognosis of 12 months (I ain’t subscribing to this, mind), getting into a mortgage seems a bit of a waste, although at the time it was a decision that promoted a thinking that I would be around for a lot longer.  I can do that without a mortgage though.

So I did what any rational, level headed person would do who gained a fresh sense of financial freedom, went to the closest motorcycle shop, followed by the next closest music store.  A few orders made (relax fam, not at the motorcycle shop), and I with the purchase of some music gear recently, I have purchased temporary happiness.  Hey, I will take what I can get.  Delayed gratification is often overrated, especially at this pointy end.

So if anyone is looking for a place to lay their head in the Perth area, feel free to let me know.  I will be ruthless with my filtering process with potential housemates.  If you can clean and cook though, you are encouraged to apply.  Actually, congratulations, you’ve made it through the filter.  You can pick up the keys tomorrow.

Tried to set up a workshop one of the old sheds with Dad, but my body was just tired.  Tired and sore.  It made me wonder the whole time whether what I was doing was just wishful thinking.  I am still excited by it all, but I have been at this point before, then my body or mind just caves in and that is it for a time.

I ran out of painkillers a day ago.  This makes me frantic as I haven’t been handling things well if I have no painkillers.  The physical pain I can handle, although it is annoying and uncomfortable.  But the Oxycontin and Oxynorm are pre-reqs for a manageable day.  When I ran out the other day, I made a bee-line for the GP who kindly doubled my dose.  It is just that the chemist didn’t have the quantity or strength in the other day, so I chewed through a full packet of the quick release in a day to get me through.  I haven’t talked much about the role that morphine is playing in my life at the moment, but it has been significant since October last year.   Like the feather was to Dumbo, really.  Except if I lose grip of the Oxy, I fall faster than Dumbo and crash at the end.

My body pain and immobility this morning was really discouraging.  I get these days every now and then and wonder how much longer this can go on.  There really is a point where going on is more difficult than going out.  There are many things that I have got that make it worth it, no doubt, but the ongoing effort that it takes to have a difficult day takes its toll.

My happiness today came from being a son to my folks – they are amazing and make me feel like the only thing that matters.  It also came from being around my sisters and my friend Tones tonight for dinner.

When I ran out of painkillers on Tuesday arvo, I did the logical thing and bought a guitar.  It was cheaper than smack (just) and is socially more acceptable (unless one plays Boney M tunes on it).  It is a beautiful thing, a piece of fine art that makes incredible sounds.  I am very happy with it – more than happy with it.  I wish I had of bought it 20 years ago.

I am still getting used to my high-dose painkillers.  They are like my old painkillers, but on steroids.  The space between this paragraph and the last is worth about 15 minutes where I zoned out.  I like them already.

Aside from that, housing options are presenting themselves.  I really love it here in the city, walking distance from most things, yet quiet.  Close to hospitals, Hyde Park, cafes, restaurants, family.

I will be setting up the silver workshop up at York this week, so not sure how wise it will be to do such physical mayhem to a body, but will see.

Meanwhile, I will also chatting with my palliative care doctor during the week.  It is not a chat about my final days, it is just about getting some more lollies for pain relief, but the mere fact that I am in periodic conversations with a palliative care doctor is a massive mental step.  When I first met him, I felt like I had just stepped over a line and was now in the inner sanctum.

My mind is exhausted by the mixed messages.  Hope relaxes, inspires, gets excited about planning, it gives permission for creative ideas to give a surge of life to a tired body.  On the other hand, I am finding it very difficult to find cheerful tunes to whistle as I go through the double doors signposted “Palliative Care”.

I started one of my jobs yesterday.  It is one day a week overseeing some doco/tutorials being made about Indigenous Language and Culture.  I think it is going to be a great project for me and quite manageable over this semester.  I will continue the silver business when I am able.  This just means setting up a workshop up at York, but I’m looking forward to getting things fired up again.  The rest of the time I will be doing my own mini projects involving writing, music and some filming every now and then.  It should be a good year.

Ok, I have to say that we are off to a good start for the year.  After a rather sombre look at the past and the future last night, I have a spring in my step.  It has been a great day and a great start to the year.

Kicked things off this morning with a visit to the beach.  I feel so fortunate to be able to live in Western Australia.  The beaches are just something else, and only 15 mins away usually.  After a refreshing dip in the clear blue waters, I went for a 1km run along the beach.  This is the first real run since the hip replacement in October.  It felt great to have the wind run through my monastic hair.

Rach then organised an afternoon of kite flying for the family.  It was just brilliant.  Seeing the new generation of kids come through nothing short of a privilege to watch.  I would love to be a Dad one day, but for now, being an Uncle is truly amazing.

So it is time to have a good year.  On the agenda is finding a roof over my head for now.  I am reluctant to detail my resolutions, but they include a couple of writing projects, music, documentaries, education, etc and on a personal front they include spending time with family and friends while recovering from last year.

I am reminded today how amazing I do have it.  There are things happening all around me where people are not so fortunate with their outcomes.  So I have it good, really I do.

The good year continues tonight with a glass of white wine, Bruce Springsteen, babysitting (Angus, not Bruce) and wearing tight black jeans and my favourite Phoenix t-shirt.  The guitar will come out in a minute or two.

Happy New Year, really.

You can check out photos from the kite flying afternoon at Rachel’s blog www.barrandgirl.blogspot.com

I remember the footage that was filmed when this blog first started.  I was cocky. I was handling a difficult situation the best way I knew how.  Well, I am no longer cocky.  I feel beaten.  I may not stay in this place, but for now, it is a feeling that is as heavy as wet concrete.

This year has included my spinning out of control, deep depression, careless treatment of those who love me, a  post-traumatic breakdown, the surfacing of all the anger, rejection, esteem crap, false beliefs, destructive self-perceptions and chronic confusion.  It has included the devastating separation from my wife Elizabeth, who has selflessly loved me through years of difficulty.  It has included too many prayers for my breathing to stop and too many verbal sprays to God stating how much he’s let me down.  It has included my body being chipped away at, making it look and feel hideous to me now.  After a lifetime of hating my body,  it seems to be getting back at me now.  I am dependent on drugs for controlling pain and maintaining brain.  This has all happened this year, and so much more.

Tonight, new year’s eve, I just couldn’t talk with anyone.  Part of me craved conversation, as it usually does, but the amount on my mind in reflection is still too much, and maybe it is better to leave the year behind entirely.  It is time to look forward.

I am not good at this looking forward, moving on, so this is my over-arching resolution I think.  I want to be well.  I want to have kids. I want to be in relationship. I want to be restored.  I want 2010 to be the best year yet.  Although I know it is possible, at this point, to be honest, I just can’t see it.

I gave everyone in the family trees this year.  Family are all moving into new houses soon so I am looking to give them a gift that lasts a lifetime or more, or just creates a root problem for the next generation.  Whatever, they will either go to the houses or go to the family farm in York to create a grove.  I have also started some recordings, but due to unforeseen chemo overdoses and bad days, I only got one song out of five half finished.  So a bit of work to go.

I received a cow amongst other things.  The cow is being given to a developing country which is just as well as I love beef more than I love farming.  It is safer wherever else it ends up.  In the absence of the official card arriving stating how the cow will be useful, Dad drew his own card up.  He is the first to point out that his artistic ability is lacking but I thought the contrary today.  The cow was incredibly lifelike.  And it is so hard to find cows with three testicles these days to do still life.  I am proud he was able to capture the detail, it being a heifer and all.

Planning the year and living details is the main thing on the agenda over these weeks, hopefully before new year’s.

Christmas is a benchmark to get through these days, and it is the unspoken concern whether this will be the last one for so many people.  My thoughts today have been with families who are having their first Christmas without a loved one, especially the family of Mark who passed away in Townsville a couple of weeks ago.  God bring healing to me, to Steve, to Tim, to Anne, to Julianne, to Holly, to Judi, to Scott, to Tanya, to Norm, to Milanda, to Petrina, to so many others whose goal maybe to make it to the next Christmas with everything intact.

I was ecstatic when Dr Brad showed me the omniscient computer screen, revealing that my para-protein counts were 0.5 counts higher than last month – up to 10.  This is still brilliant, and a damn-sight better than the 3000 experienced in earlier tests.

Not only this, but I have been accepted into a hospital-based trial that will keep me on this drug for another amount of time once my 11 cycles run out (which is actually pretty soon).  This news is fantastic, as I am doing very well on this drug, and the longer I can be on it, the longer I get to breath my allotment of oxygen on this earth.  I was absolutely so thankful for this news, and see it as a real gift – unexpected and right in time for Christmas.

The upside of being pretty bad with maths is that I miscalculated what my 11 cycle Velcade limit equated to.  I was under the impression that this worked out to be close to a year (thinking each cycle was a month originally) and if we stretched it out I would get about 18 months.  But, alas, 11 cycles gives only 33 weeks, of which I am about to use up my 10th, and we could possibly squeeze a year out of it with half doses.

The downside of being pretty bad with maths (or just blissfully ignorant) is that I just lost a significant block of time in my thinking of what life is left.  Still, in the light of the tragic news of my friend Steve who has recently been diagnosed, I have nothing to complain about at all.  Healing needs to happen for him before it happens for me.

At the end of my day, however, I have felt so thankful to God for everything I have.  My family and my incredible friends.  Everything I have I count a gift, apart from the dumb-ass plasma cells that can’t get their act together, but they at least have a little more time to sort themselves out.

I have the best doctor a guy could ask for in Dr Brad, and equally amazing nursing staff who have become life-long friends.  Although in this industry it is pretty easy to make life-long friends, these people would be the amazing long-life friends also, it is just that we need to squeeze that long life into a small chunk it seems.  Quality sometimes outweighs quantity.

I accidently took a double dose of chemo today.  That’s what happens when they leave me in charge of my own drugs.  So now I feel a little wrecked.  Must sleep.

The prognosis is devastating, and he has a wife and two young children who have begun their journey that no one should go through.

After being forced to think about these matters for a couple of years now, I still don’t know what to say.

The night before last, Thursday night, I wrote an entry.  I held back pushing the ‘publish’ button as I wasn’t sure if it needed to go public, or whether it remains private.  There are still many things that are too raw at the moment.  This is it though:

Overwhelming

How good it is to have Angus take to the drums.  He loves them and I love him.

If I could come back again, I think I would be happiest just playing the drums.  Before I knew what a drum kit looked like, I was hiding ice-cream containers under my bed, along with a selection of knitting needles and textas.  When the concert in my head started, I would set up the kit and play along to tapes.  My drumming improved with practice but, due to lost and damaged drumsticks, mum never got around to finishing any scarves or sweaters.

I have met with Dr Julian before, and after 40 minutes of him telling me how risky the process was, I decided I would not go ahead with it.  Today really didn’t change things.

Carms came with me as one who would provide an objective ear and medical background.  I went as one who has a subjective predisposition and medically battered.  We both left feeling the same.  In the past, I have been wary that I may be refusing medical treatment based on my emotions on any given day.  There comes a time also when the mind gets tired of treatment before the body does, and my mind has been there too many times.

In saying this, I am not discounting the possibility that a stem cell transplant from someone else may not be on the cards in the future, but I would have to be completely on my last legs and sporting a ‘whatever!’ attitude.

The risk is that the new stem cells would essentially give me someone else’s immune system.  This is a good thing in regards to fighting off the myeloma cells, but it could also attack my own body (Graft Versus Host Disease GVHD).  This often results in poor quality of life and risky complications.

On the positive side, there may be other drug options that are available when this Velcade becomes less effective or available.  I left feeling fine about the options given, apart from none of the options involving cure.  I have not even contemplated the possibility that someone may come up with a cure for this one during my lifetime.

I scratched myself today and started to bleed.  It was the first time I looked at my blood with contempt and thought, “This is all your fault”.

In either my teaching or running camp stuff, I used to love posing questions to kids and adults that were quite challenging on ethical, personal or social fronts. An example would be, if you had to choose between being blind, deaf, or unable to speak, what would you do?

I would usually explain to the group first that I wanted an answer in the first 10 seconds – their initial response. I would then give them a time to think about it more deeply (once I had comforted and assured the younger students I wasn’t going to put them through any body altering procedure). The processing of such questions I found fascinating. Now, I am not such a fan. This one is a doozie.

The last few months, as I have mentioned, have been incredibly uncertain. The prognosis has been probably the poorest in the time I have been sick as the cancer went out of control exceptionally fast. The good news I got a month or so ago just did so much to turn my thinking around – I can’t explain what a difference it made to my mood. I can’t remember getting such good news the entire time of being sick, apart from when they told me I would be unconscious before they put my urinary catheter in. In that instant, I didn’t want to know the details, who did it, or what comments were made. I just silently rejoiced.

The wonder drug that I am on now is brilliant – few side effects and very effective. Unfortunately it is also very expensive, and the government thankfully foots the bill, but only for about a year. We can possibly stretch this out to 18 months with something off the top shelf or by halving doses, but that is how we are looking at the moment. This is the good news.

The complicated decision is what treatment to do next. My biggest hope at this stage is what is called and allogeneic stem-cell transplant. This is where someone else gives stem cells, as opposed to the last one I had where I took my own. We have done the tissue typing, and my sisters are not a match.  In fact, Carms might be adopted (Sorry Carms, can’t remember if I mentioned this today when I popped around). But there are 6 excellent matches in Australia, and more worldwide, so I have the option.

The thing is, I only just scraped through my last transplant. Kidney failure, chest infection and hospital meatloaf all took their toll. Dr Brad has told me a number of times that the risk of me not making it through this allogeneic transplant is high. The Haematologist who conducts these transplants in Perth said the same. Both Doctors at the time (about 9 months ago) supported me in my decision when I told them I had chosen to not go ahead with this transplant.

If the transplant is a success, I still risk acquiring Graft Versus Host Disease (GVHD) where my immunity is compromised for the rest of my life, and my quality of life would be largely unknown. My body still hasn’t fully recovered from the last one. Quality of life means a great deal more to me now in terms of making these decisions, even though I realise I have still been far better off than so many others.

The bottom line of the up-side, is that this kind of stem cell transplant is my best shot at a longer remission. If it works, I will have a shot at a few years – five maybe, who knows. The thing is it could be five great years, or five really difficult years.

Then there is the issue of what I would be risking on the Roulette Wheel, or maybe ‘Craps’ would be a more appropriate association. In order to do the stem cell transplant at all, I would need to be in the best condition I can be. I would need to be well, fit and mentally strong. That time is coming up soon. My window period is not far off, so I am going to be considering this around about March next year.

As it stands at this point, I will be risking possibly a year of good quality of living whilst on Velcade (that is if it remains effective for me) to take on this procedure where the mortality risk for me is very high, to possibly get some more years that might or might not be worth getting out of bed for, if even that is an option.

I have decided to not think about it for this month, except to write this entry down, except to explain it to family and friends, except to consider it in the privacy of my own thoughts, except in the waking moments and the ones where I get to shut my eyes.

I am honestly not as worried as I should be, and that is the Peace that cannot be understood. I know that I may get worried in the future, and I am not pretending to be on top of this at all. It is just that I still feel upheld. In no way, does this make it easy.

This last year has been the darkest of my life, and most likely the most difficult for my family.  It would take quite some time to describe the despair, the yearning for God to remove me from this earth, the regret of all the stupid things I have done in my life, the intensity of the physical and mental pain, and above all, the depth of wretchedness.  And that was just a normal day – I had some bad days too.

Today is different.  I can say God is good in spite of devastating things happening – and not say it with a grimace.  I have learned a lot about myself, and faced the reality of what has been my life so far, and I feel like God is keeping me around – despite my indifference to life at times, despite my desire on numerous occasions to be terrestrially removed (not to be confused with testically removed, mind).

I did keep a hand-written journal during the majority of this year.  It contains the details of darkness and confusion, sadness and complete despair.  My own reading it back to myself scares me, but it also seems like I am reading about someone else.  That whole chapter of life is one that seems unreal, and I wish with all my heart it was.  There are some walks though that are too painful to endure publicly so close to the time it happens.  I am thankful to Elizabeth, my family and friends who have given me reason enough to keep going, when everything contained in me alone gave every reason otherwise.

I am glad to be typing again, my handwriting often sucks.  Thank you Mrs Passmore for teaching me Typewriting in Year 8.  Sorry for cheating on my final test, but Honky did too.  I think I can track down his address if you think a detention would be appropriate.

The comments section I am keeping disabled at this point to keep spam under control, but there is a contact address in the sidebar.

At the end of this week, I will be archiving the text and videos, so the content will come down at this time.  My contact details remain mostly the same, though my mobile number has been transferred to the business, so will be answered by one of us during business hours.    

The current radiotherapy has been going well.  The picture below was taken about 4 weeks ago.  I am happy to say that the tumor has gone down by more than half with the combination of radiotherapy and a course of steroids.  I have lost all the hair in the treatment area which is permanent.  Great if you are a monk.  The staff at the cancer centre and haematology at Charlie’s have again been absolutely wonderful.  

It was one of those photos where I found it hard to crack a smile.

Aside from this, the plan for the future is to focus on some significant life changes, building healthy relationships and building a healthy body.  For all the things that I have written about that may give the impression I have handled things well, there have been many that I have not written about that I have handled very poorly.  If I seem removed from normal life for a time, it is for the purpose of rebuilding.

Once again, many thanks.  

Cameron

I had prayer for healing today with the elders of the church I go to.  My faith is not in a medical breakthrough, although I believe I am being sustained incredibly admirably by the fantastic medical professionals I have.  God ultimately has my days spoken for, and I am sustained ultimately by Him.  He indeed has the power to heal.

Why we sometimes don’t see it, when other times we do, is beyond me.  But the hope is in the promises given.  I wish the outcomes were more formulaic in nature, but at this point in time I understand more on the sovereignty of God.  Makes me want to persuade Him, convince Him, beg Him to change his mind, give me my health back.

Ironically, I feel 95% normal. Well, normal for any 35 year old who has let themselves go for two years.  For the first time in two years, I ran around an oval, went to the gym, played a little soccer with the Tapley boys, then ran around another oval.  Just like Pinocchio, it felt really good to be a real boy again.  No, I lie, it felt amazing.

Tissue typing/blood matching will be discussed tomorrow at Royal Perth Hospital.  This is in preparation for the next planned stem-cell transplant.

Apart from this, I am enjoying work teaching, looking into possibilities with the silver business, and contemplating what the future holds.  There is a lot to consider, almost as if the health problems are a minor inconvenience – bad timing, it would seem.

The bump has continued to grow in the last week or so. The headache is constant but not debilitating. I am wondering just how much this thing is getting the chance to spread during all this testing phase. I still have another MRI to go through next week.

Apart from that, I am quite at peace about the whole thing. It is not keeping me awake at night and I am continuing working and doing normal things during the week. That is the goal, to continue doing so.

I saw the radio-oncologist on Tuesday. I have had a few chats with her before when it looked like the worst case scenario had happened, so she said she will save me ‘the talk’. I’ve heard it all before, numerous times. If we do go down the line of radiotherapy, the main side effect would be the loss of hair. As the lesion is on the crown of my head, it would leave me looking like Friar Tuck. This would have come in handy if my desire was to be considered for the monastery, but that is not on the cards at the moment, so I guess my shaved head will be the look of choice from now on. I can only imagine that a decision like this for women holds far greater concerns.

I had an appointment with Dr Brad yesterday. The blood results are now indicating an increasing level of light chains (Kappa) in the blood. These could be from the head lesion alone or from other sites in my body. We don’t know yet, and we probably won’t until my scans are done. I am having 3 whole-body scans. One PET, one CT and one MRI. The chemo regime of choice at this point is Lenolidomide with Dexamethosone steroids.

The lump on my head is not really noticeable to most, as it is under my hair, but noticeable to me as it is like someone has inserted half a golf ball under my scalp.

Testing for stem-cell matches should happen this week coming.

A lot has happened in the time since I last posted anything on here. I will just keep this brief for now and update the cancer side of things for this time.

Physically, I have been feeling really well and have been enjoying renewed energy, getting back into work and trying to maintain good health. A couple of months ago, a bump appeared on the crown of my head where a lesion was last year. It grew slowly but worried me enough to get it tested. The results came back all clear, so we waited for the bump to go down. Well, it didn’t go down so I asked to have it checked again last Friday. It had become quite large (like half a golf ball under my skin). The results came back positive this time for plasmacytoma so I will be beginning another few weeks of testing, planning, discussions and decision-making and starting treatment again.

As far as we know, the lesion is not in my brain, but just on the skull. As far as we know, there is not other evidence of other lesions. As far as we know, my bloods remain normal – a good sign. It looks as though the most likely treatment will be radiotherapy with chemo. I am reluctant to have radiation to my head. It’s not a pleasant experience, as far as I know.

I am in good spirits, although the news was initially quite difficult. I am not sure how things will progress from here at this point so I have nothing really more to say for now, but I guess I just wanted to officially be here to welcome you back. I’d feel like I was being a bad host otherwise.

I am incredibly thankful to everyone who has walked beside us and I feel honored that people would share what we have gone through. I am thankful to God, my fam, my friends and people who I have met through this time.

For now, it is time to hang up the boots. There may be an appropriate time to continue journalling here again, or to conclude this chapter in some way, but for now the website will be in remission.

Once again, thank you.

Cam & Elizabeth

It will be something that is written in retrospect, but for now, I am looking forward to another week ahead.

I wandered into the shop and browsed the silver spoon collection. There were a few Harris & Son items that Grandpa would have made back in the 1950’s and 1960’s. There was a lady behind the counter and a gentleman sitting down next to the counter, and they asked me if I was looking for anything in particular.

“I was just interested in the Harris & Son items” I said. The attendant’s face lit up.
“Really, we were just talking about Harris & Son just before you walked in! I have just wrapped up a Harris & Son brooch that will be sent to the National Gallery in Canberra this week for their collection”, she exclaimed.

I introduced myself and told her that I was the new owner of the business – her jaw dropped, she was very excited. The next half and hour or so we spent talking about the history and what I was planning to do with the business now in the re-launch. She asked me to get as many photos and as much information as I could so that she could send it to the National Gallery with the brooch.

I went straight to the State Library where I knew there was a taped interview with Grandpa from 1985 with a transcript. I found out there were six tapes and a 200 page transcript on the early years of the jewellery trade in Perth. I started to photocopy but then just read through it as I was running out of time. Tales of gold theft, murders, early jewellers and life in the early 1900’s – it made for very interesting reading and I could hear my Grandpa’s voice clearly as I read the transcript.
So in the last 24 hours or so, it has been a mad rush to get as much information to them as possible and my mind has been ticking over with ideas of collecting the history and publishing it.

I have contacted many previous customers to let them know that the initial website is up and running, prior to the official launch in December/January. I am working on some designs for the Fourth Generation Collection but I am still waiting on some casts to come back from Sydney. I will be putting them up over the next month or so. The website is at www.harrisandson.com.au

Great Grandpa, Del, Grandpa Harris. Central Arcade, Perth. Circa 1930′s

Now I will tell you up front, I am not a fan of some kinds of storytelling anyway, so I guess I was a bit sensitive before the specific stories about cancer started. My friend at the gym and I have similar experiences when first diagnosed in that some people’s response was to just recall stories about other people who had cancer. It was as if the keyword ‘cancer’ just triggered a barrage of stories that contained the same keyword. She remembers that the stories she heard were not necessarily ones with positive endings. So, after holding myself back for many months, let me express what I think about stories, specifically in regards to cancer.

In the first couple of days after the confirmation I had Multiple Myeloma, my mind was processing every conceivable outcome and emotion while coming to terms with the uncertainty of what treatment I was to face. I don’t know how the mind does it, but there is a lot of logistic detail that is being processed while the body is in complete and utter shock – suffering emotionally and physically from the symptoms that have already set in. It is one of the ultimate overloads.

The response of people around me was incredibly important during this time of course, and people wanted to offer anything they could to help me stay positive or encouraged in light of the recent news. I am sure intentions were good, but when people responded by telling me of their ‘friend who had cancer and they are okay now’ stories, I didn’t find it helpful at all.

In the beginning, it seemed as though some people assumed I hadn’t heard of people who had cancer before this time. More and more people know more and more people with cancer these days, and the experiences and outcomes are so incredibly varied. Initially, the recounting of others’ experiences didn’t really faze me because, to be honest, I wasn’t listening to them. It was just too much for my mind to take in at that point. I already knew that some people survive cancer, and some people do not. I knew that I was going to do either one or the other, but I knew enough about cancer’s lack of respect for consistency and predictability to know that everyone’s experience is different. For every cancer story I heard that had a happy ending, I knew of the stories that were kept quiet. It would be naïve to assume that someone would be fine, because someone knows someone else who had cancer, and they were fine.

In saying this, there were some helpful exceptions. I found it very helpful to hear of people who had the exact same cancer, and that they had made it through 10 years, and were still okay. This was fantastic! Hope had testimonials, and these stories were brief, current and appropriate. In the end, I stated, “I don’t want to hear any stories about cancer unless they are about Multiple Myeloma and positive! Don’t tell me anything else!” Anything else, was just too much.

Another danger with this responsive storytelling, is that it can come across as a distraction from what the person who has just been diagnosed may be feeling. The intention may be to ‘protect’ them from feeling the worst they could feel, but it may result in feeling like the severe reality of the situation is being minimized, possibly trivialized. Comments may be made like, “Don’t worry, Jane had breast cancer five years ago and she is fine now!” The reality is that such a diagnosis does make people worry. This feeling should not be discounted.

For some people, this may not be their point of view. They may love hearing story after story about others’ experience of cancer. I am personally, however, far more in favour of listening to how people feel and supporting them than trying to recall every story I have heard with the word ‘cancer’ in it. I don’t want to come across as wanting to shut people down whose intention is to comfort people after diagnosis, but after talking to a few people who have been in this situation, I think it is worth considering.

I guess I know of people who’s approach to coping with life’s traumas is to shelter themselves from the full brunt of the devastating reality, then once they are through the harshest point, they find it best to minimize their ordeal emotionally and move on. I can empathise here, because I have tried to cope with some traumatic situations in this way, and it has been to my own detriment and to the detriment of those around me. It may be a coping strategy, but maybe more for the short term.

In coming to terms with what has gone on recently, there have been many things that have risen to the surface that have been unresolved over the years. Now they cannot be just put out of sight as a way of ‘dealing’ with them. I know this is not what everyone experiences, but for me, it is the biggest task on the menu at the moment.

It is often when we humans stop, or slow down at least, that our unresolved issues have a chance to catch up with us. I suppose there are a few ways to avoid this having an affect on us – we can just keep busy, shut down emotionally, keep ourselves distracted with menial interests, or drugs and alcohol can work well – just to name a few.

I find it difficult to have to sort through this stuff – Is it going to be beneficial? Can I actually get through it without losing my mind? Why would I choose to deal with stuff that makes my throat swell and chest tighten just thinking about it? I think these are all very real and valid questions, but I have experienced severe changes in my persona and behaviour because they are shaped around avoiding dealing with the unresolved – and this hasn’t been healthy.

I have had a few discussions with friends about confronting conflict recently, and I believe it has some similarities with how we deal with the trauma in our lives. In the instances where I have avoided conflict with someone, the relationship has never grown, or been restored. In some cases, I have left the conflict unresolved because it was just too personally damaging to be in the situation – it seemed right just to leave it be and as a result, I said farewell to the development of the relationship.

I believe the same when we are dealing with life’s traumas and hurts. I guess if we are not prepared to deal with the realities of issues that grieve us in this life, the alternative coping strategies will not result in personal growth, insight or resolution.

So I am not really surprised that there is a lot coming to the surface in my life. It is causing a lot of grief in the present, but there is a quiet excitement that comes from the hope of getting it sorted. I certainly am not experiencing any hint of the relief that I hope will come down the track, but for now, I just believe that it is possible and remain encouraged by others who have come out of similar situations triumphantly.

So this stuff can stir up a desperate need to rid oneself of anything that is not sitting right. I guess that is why so many people make life-altering decisions when they come through a tough time. I don’t believe it is good enough to walk away from difficult situations, hoping that we will forget about them as we continue in our busy, distracted lives. For me, I won’t feel truly well, until I am truly free.

To illustrate what can happen when we avoid facing reality, we should remember what happened to The Black Knight.

I watched a DVD last night about healing cancer. When I bought it, I was under the impression that it focused on fighting cancer through diet. Well, I have watched an hour of it and all it did was talk about the cancer industry, and how much money was being made from ‘cancer research’ and treatment. They really came down hard on radiotherapy, chemotherapy, mammograms and a few other forms of treatment that they believe aren’t really effective against cancer, and maybe responsible for causing cancer.

So difficult. I came away feeling very confused. It is not the first time I have heard this perspective of course, but when you are in treatment under such radical regimes, your faith needs to be placed in the treatment you are under to keep peace of mind. I can’t imagine being in the middle of a stem-cell transplant and processing the perspective that the treatment is useless. But it all does make me wonder how I am going to approach treatment in the future.

For me, and many others I believe, chemo and radio therapies at least bought me some time. I would’ve loved to do without them, but I still believe it was the right move in order to keep me here this long. At least it has given me time to consider all these options.

Just before my high-dose chemo and stem-cell transplant, I heard some encouraging statistics about the survival rate. The stats are usually given in 5-year survival rates and for Multiple Myeloma it was around 40% when I was reading stuff just after my diagnosis. Then that figure became 50-55% just before my stem-cell transplant. I am more aware now that these figures seem to be affected more by early detection (as the 5 years begins at diagnosis) and a whole swag of number games that can influence the way the absolute figures appear. I am not convinced either way at this stage, just a little more confused than before in how this will affect the future.

As I have mentioned before, I have found statistics useful when coming to grips with how severe a situation can be. It has the effect of grabbing my attention appropriately and motivating me to do all I can to fight against the situation. I have never felt as though the statistics are a sentence or that they bind me. My outlook is still for a long remission, healing or cure. I don’t live in fear, but I still have a concern.

The choice to refuse mainstream treatment can be seen as a resignation to the situation or a ferocious determination to keep one’s breath in one’s body. There are other reasons, I am sure, but at this stage I really have no idea what I would do next. It would be great to take the mindset that I am just going to forget about my cancer so that I can live happily without a shadow over me. But at the moment I am doing the thinking that I don’t want to have to do under pressure if symptoms come back. I want to be able to confidently direct the treatment pathway based on knowledge and experiences of others.

For now, my goal is to remain stress-free (some say it is possible), have some spiritual healing take place, exercise a lot, enjoy life, eat well 96% of the time (the other 4% is reserved for the ‘enjoying life’ part). At the moment, my back aches, my arms ache and my legs ache. I am happy that they ache because I built a block wall on the weekend (Big thanks to Dad for doing the heavy lifting!), put some shade-cloth up, and have been exercising more. It is so good to be feeling sore for the right reasons.

This is a taste of things to come for me. I have been concentrating on re-launching the silver business after it has been out of the family for ten years or so. This photo was taken quite a while back, as you can probably tell. It was one of Great Grandpa and Grandpa’s shops – I think this one was a country store.

I was at a business seminar the other night, and the speaker was inquiring about my business. He was loving the fact that it was established in 1921 and that it dealt with silver. It was really encouraging to hear this guy speak so highly of the opportunity.

One thing that I was not looking forward to was initially working alone so much. I like being around people, and it has been a long time since I have been at work full time in a social setting. The other point that this guy made the other night was how it was an incredibly social industry. It made me realise that I would actually be meeting a lot of people through this business. This makes me pretty darn happy, I can tell you.

It won’t be long before the website will be up and other promotional gear will be ready. It is a bit daunting sometimes, but the cautious excitement is very motivating. I love working on stuff in the workshop, and it is going to be good for my mind. I feel like it has all been provided for me for this time.

Firstly, some of you may have realised if you have done a google search for ‘The Walk Beside’ to get to this site, then you may have been greeted by The Walk Beside heading, but with details underneath of how to buy various pharmaceutical products for a firm body, or parts thereof.

A friend called me months ago and said that The Walk Beside had been blocked due to inappropriate material, and he listed a few words (I blocked my other ear) that were coming up that I remember getting punished for saying when I was a child. I went through the site and confirmed those words weren’t on the site at all, and besides, I didn’t even know how to spell the words he listed.

Anyway, Guennadi (who knows everything about computers) sorted it out this morning. It seems I was hacked into and words were hidden in the header of some posts, but not displayed, so they were there, but not visible. Whenever a search was done, the words would appear. Sorry to families with young children who have may have spent some time having to explain, or deny any knowledge, of some words and phrases.

On a positive, I was contacted last week by a lady in California who has co-authored a book on the effects of chemo brain with a Doctor at UCLA (University of California, Los Angeles). A cancer survivor herself, she asked if she could use the post I wrote on Chemo Brain the other day in the book. The manuscript gets sent to the publishers at the end of the month and I will score a free copy.

Keep your ears to the ground for my book signing tour.

Looking back, it has been eighteen months, maybe two years since I felt this good. I literally feel like I would feel the same if I was a perfectly well 34 year old who had been a bit sedentary for the winter months. My muscles are still trying to find their memory and my bones may creak from time to time, but no more than they did before all the hoo-har began.

While I was in Albany the other weekend, I was challenged to run. I thought, “I actually feel I can do this” so run I did. The first 30 meters or so would be very loosely defined as ‘running’. The first 3 meters were spent realising that my body had forgotten how to move forward at a rapid pace, and the remaining 27 meters were really just throwing my feet out in front of my body while it laterally fell. I ran about 300 meters without stopping, so I was quite surprised how quickly I have returned to my usual peak fitness level.

Now I am riding each day to work. It is one kilometer away – an intense one kilometer. I imagine it won’t be long before I can remove the training wheels and get enough speed to overtake pedestrians. It is good to have goals.

My excitement is building with getting into some full-time work again. I went to a workshop on business management, have worked on promotional material all week, and have worked on some design development for the silver work. I think the biggest problem I am going to face now is how to divide my time between the workshop, the education website and the filming of documentaries. I will explain all these projects a little later down the line when the websites are up. But for now, looking forward, I am pretty amped.

I was chatting with a lady at the gym yesterday who is a vet but has headed back to work in a support admin position as her thinking capacity had been altered after chemo. She specified that her ability to grasp concepts had been severely affected, and she found herself making errors in simple calculations.

For me, it has been just as much of an issue. My ability to find the right words, remember conversations, follow directions etc. has been really hindered. I’ve realized I forget specific details, repeat myself, or forget specific details. I am hoping it gets better over time, but it has been a more significant factor than what I would have thought before.

Peripheral awareness has also been affected and I notice this mainly when I am driving. I drove on some days when my body felt energetic and capable, but I genuinely lost interest in checking my blind-spots, looking in my mirrors, indicating and taking off or stopping gently. It was as if I had actually refined my driving skills, rather than lost them. And it is not as if I became completely useless behind the wheel – not everyone can say they’ve driven themselves to biopsies through oncoming traffic.

It has been six months now since my last lot of chemo, which was the high-dose proceeded by the stem cell transplant. I feel like my chemo brain is improving over time, but the improvement seems erratic rather than consistent. These days, I can’t play chess, do complex mental calculations or remember words to songs. But these are a few of the things that I couldn’t do before the chemo anyway. I consider this consistency is a positive thing.

Any comments indicating nothing at all in me has changed will be spammed.

Thankfully, she was accepted into the trial program that is only being done in Melbourne at the moment. It makes her quite lethargic and nauseous in the recommended dose, so it has been reduced to a manageable amount. Today she got the results back from her CT scan and it shows that a nodule in her lungs has increased in size.

Anne has dealt with her situation in an amazing way ever since I have known her (and I am sure before that!) and she seems to be able to remain level-headed through what she has been through. When results come through that are not expected like this, I begin to realize what it is like when friends look on and feel a sense of helplessness in the situation. As Anne put it today, “it is not the worst news ever…”

So here’s to you Anne, Graham and Fam, I am hoping your good news comes swiftly.

I am sorry to disappoint. But on all accounts it sounds like I should have had the most wonderful of years. To be honest though, I have had better.

I had to apologize to the lady and tell her the truth. I said I have actually had a terrible year. “Thank goodness, you are real!” she laughed with a sense of relief.

There is a train of thought that I don’t relate to at the moment. It involves thinking that something like cancer is the best thing that happens to someone. Now I am not saying that I may not get to that point, but I am honestly not there yet, I don’t expect to be, and I don’t want to be. I liked not having cancer – true, I really liked it.

There are a few reasons why I think people try to perceive nasty situations as being great. Sometimes, it may be due to the pressure placed on people in some circles to smile in the face of tragedy, fearing that a quivering lip may show a lack of faith, strength, certainty, hope. Of course, it may also be a way to protect oneself from the harsh realities of life – if it is talked up as being positive, there is no need to deal with the traumas that we come across in this life. When I think of this response in relationship to how God would see it, I am convinced he doesn’t need us to talk up tragedies so that he doesn’t look as bad.

I am very wary when people immediately reflect on a terrible situation and declare how much good came out of it. This is not to say that good things can’t happen in the midst of trauma, but it doesn’t help me personally to see them as cause and effect. I am sure most people completely understand that the year has been difficult, and I am not interested in reiterating the struggles – I think we’ve all had enough, but I feel it is important to make things clear all the same.

I remember hearing of someone’s funeral where the friends and family were ushered prematurely into a time of celebrating the life of the departed. In an attempt to lessen the sad reality of the situation, the gathered were led in triumphant songs and the mood of the service was kept light. Days after the service had taken place, they repeated the service for those who needed to engage in a time of grieving. They had endured a devastating loss, and they were ballsy enough to let the loss wreak havoc with their spirit for that time. It was time to respond honestly.

For me, there have been so many things happen over the year and a half that make me very happy, and I wouldn’t want to give them up. It has been a chaotic mix of highs and lows. There are still many things to be thankful for and there have been fantastic times throughout.

My perception on this may change in the future, I am not sure, but for now I am happy I am alive and experiencing an extension of time thanks to a terrible year of treatment. I never want to do that again.

Three couples (Steve & Leanne, Muz & Katie, Libs and I), one baby (Muz & Katie’s Asher), one fetus (Steve & Leanne’s ‘No Name’), camping gear and farm boots headed down on Friday arvo to Albany ready to escape the comforts of civilization. Sometimes you just need to strip everything back to the bare essentials to appreciate life – no electricity, no showers, no flushing toilet, no tv, no phones – just people and paddock.

We got down pretty late Friday night, so the Pyles (our camp parents and hosts) had kindly set up beds in the farmhouse for us all. Superb! After hot drinks, catching up and getting settled into our camping experience, we headed to bed.

Woke up to Muz’s Birthday, and so we all went into town for supplies (except Muz, who kindly babysat). The nation stops around the end of September for the Aussie Rules Grand Final. When I say the nation stops, me and a few other non-sport-watching Australians usually have the rest of the nation to ourselves for 3 hours while supporters tune in to the game. So being Grand Final day, the television took care of the afternoon and I was able to get whatever else done.

The rest of the day was dedicated to setting up tents, meeting cows, preparing meals and having communication breakdowns. The rain was always going to be threatening the weekend, but it ended up being a perfected first night in the great outdoors. Much to the delight of the women, we gentlemen spoke with Russian accents the whole weekend. As expected, the novelty never wore off and I know that our wives are disappointed we men are no longer feeding off each other’s comments.

In the moment.

I told my usual Ghost Horses story, which is actually a true story. Those of you reading whom I worked with in the summer of 97 in the Blue Ridge will know what I am talking about.

The bottom paddock campsite.

Cowboy Asher

That was the only night we really camped. I guess the combination of possible rain and a warm farmhouse just made it clear it was the right thing to do. Thanks Ma & Pa Pyle!

(l-r)Steve, Leanne (and No Name), Diane, Asher, Muz, Katie, Colin, Libs, Cam.

Apologies to hometown locals who we didn’t get to catch up with. Looking forward to seeing you around the new year though when we are down with time to do so.

It has been another special time of marking the beginning of this next stage of life. I live in constant amazement at the friends and families I have the privilege of walking the same patch of earth with at different times in life. The battle to get through this sickness is not a battle to keep my body in a world that I know – but to keep it with the people I know. This is when it becomes the fiercest battle of all. If everything I have experienced in the last year only got me to this weekend, I would have done it smiling, wondering what to pack.

We were driving out of the hospital as I opened the envelope, pulled off to the side briefly to read the report, then continued on driving. It was as if I had just pulled over briefly to read a map. “Well, that’s good” I said, then drove home. Other info included that it has reduced in size by about half. Nice.

So another saga over with. I guess I could get all reflective about it now, but I am happier just to take this one at face value and be happy. I am so grateful for everyone’s support during this time.

We are heading down south for the weekend with friends. Really looking forward to it.

It will be nice to be without cancer for a while.

I have been postponed again insofar as radiation treatment. I am meant to start next Tuesday, but I doubt that will happen.
For now, we prepare to go camping with some friends over the long weekend. I am really looking forward to that. It is the perfect time of year and a chance for a little bit of relaxing.

I feel like I have done my fair share of relaxing. It seems I have spent a major part of the last 18 months in bed, hospital or on the couch, relaxing. Time to get moving.

Above all, I am so thankful for the support and prayers during this time. This has been a real ride, something I wouldn’t want anyone to go through, but people have chosen to and I am grateful, yet sorry for putting people through this (yes I know, your choice, but the feeling remains). I am honored, nonetheless. No one likes this kind of waiting. It is not exciting, not conclusive, not soothing, not peaceful. Just a reminder that things can certainly be very uncertain at times.

She is dainty, beautiful and peaceful (the times I have seen her).

Those who are keen to see more can click on this:
http://picasaweb.google.com.au/LaLaBain/Stella12Days
and choose slideshow.

For those who may want to know the details of such a procedure, read on. I know it can sometimes be helpful for people to have some sense of preparedness if you are going through this. Some may choose to not find out if it adds to their anxiety.

I have now had four samples taken from my sternum area. Of these, hang on, let me count… none have been enjoyable. I think it is more to do with the fact that someone is working quite close to the core of your body with sharp implements. Every part of your body’s instinct is to protect the core of your body, so to allow such violation is a real discipline. I would imagine similar feelings occur with procedures to the head.

I gowned up in a two-tie exposing little number today. Being fairly tall, the gown tends to be more of a shirt for me, leaving my legs and upper thighs as temporary highlights on the ward for staff and other patients. I need to be careful not to drop anything on the floor as bending down to pick anything up can be awkward.

After a chat with the Specialist, consent forms were signed and I was taken into the CT room, as the CT scanner is used to provide guidance as the needle goes in. They did a few diagnostic scans first up which involves injecting a contrast dye into the cannula. This moves through your body pretty quickly and gives you a warm rush, you feel like you need to take a leak, but it passes (the sensation, that is). They then marked on my chest where the entry point would be and then prepared me for the biopsy.

They didn’t give me a sedative like I hoped for, as I needed to be fully awake to respond to the instructions of breathing. Local anesthetic is injected around the entry point, and for me this was just left of my sternum. Once the site is numb, the biopsy needle is pushed in a little way, and a scan is taken. The Specialist makes sure the needle is following the right line into the mass.

A guy from cytology was standing just outside the door, and as soon as a sample is drawn, he views the cells under a microscope and gives immediate feedback on the nature of the cells in the sample. In my case, it was to determine whether they did a full biopsy or just the aspirate. In the end, they just left mine as an aspirate, as there were no suspicious cells observed.

The most pain was felt as they punctured through cartilage. It is just uncomfortable, but then the needle reached a place that did give me a bit of pain, so I let him know. I did this with a pitiful wincing expression and a groan that spoke a thousand words – mostly expletives.

I realize how tense my body is during the procedure, as it is exhausted when I relax afterwards. After about 3 hours of monitoring, I was allowed to head home.

I don’t want to have to do that again. I have had enough for now, and am looking forward to getting back into my normal routine. I have decided that it is easier for me this time to live as if my results are benign while we wait for cytology. It is a lot easier than living in limbo. If the results are not favourable, I will deal with that then.

Innocent until proven guilty.

Yes, a very cute photo of The Gusmister. Stay tuned over the next week when I put an updated photo up of Stella Bella.

I noticed this morning that I have lost 14 kilos since I bulked up for chemo. I have lost a lot more than I thought I would this time around being on my diet too. I am trying to get to a goal weight of 85kg. Depending on how much they want to sample from me, this biopsy should help.

I got a call from the hospital asking to delay it for a week, until the results of the biopsy are confirmed. No problem there.

My body is going ok at the moment. I walked into work again today and back, so I am going to start getting back to the gym now and see how things go.

All we are waiting on now is a call from the cardiothoracic surgeon who will be performing the biopsy to let me know when it will take place.

I have been going through some old photos to use for promotional material for the silver business recently. This is one of them.

This is Grandpa Harris, the master craftsman. He did his training as a ring maker in Birmingham before coming out with his parents to Australia. He and his father melted their own watch chains to make rings to sell to Perth jewellers. This partnership was the beginning of Harris & Son.

When I look at Grandpa’s hands, I see that I have his hands, and so does my dad. Sometimes it is easier for others to see the resemblances, but I see the hands. Actually, there is more, but not in the photo. When I was about four, Grandpa was working silver down the shed in the Albany and as it was summer, Grandpa had his shorts on. Grandpa’s legs were thin, but strong, and crowned with knobbly knees. I said, “Grandpa, you’ve got funny legs!”
He looked down at his legs as he bounced up and down on them and replied, “What do you mean? There’s nothing wrong with my legs! They’re fine legs!”
I looked at his legs as he bounced up and down on them and the image stuck in my mind. Well, I grew up, as did my legs. Grandpa died when I was about twelve, but his legs still walk this earth with me everyday.

During my recent trip to the Albany, my Aunty mentioned a few times that out of the corner of her eye I would remind her of her father (who is my Mum’s father). It was the stance mainly, and maybe a few other characteristics.

Granddad Brown was a Baptist Minister in and around Perth. He spent a lot of time traveling through country areas, and eventually drove a van around carrying books and preaching at different places. One night, when my Mum, Aunty and Uncles were still quite young, he was involved in a car accident and was killed. He was about 40 years old. Here is a picture of him.

When I look at this picture, a few things stand out – the tilted head, the placement of hands, and the hair. Although I never met my Grandad, I can’t help feel these things feel quite familiar to me for some reason. I also have a three-piece suit, but I don’t think that’s genetic.

I haven’t written enough to do these two men justice here, but it is just something that I have found interesting more recently.

Guennadi is, again, one of the few people I know who really knows his place in this world. A lot of people go on epic journeys or self-awareness weekends to ‘find themselves’. But Guennadi knows who he is, and where he is. Now you can too, as Guennadi is on the move and carrying a personalised GPS. You can follow his movement here (hit the satellite tab and zoom right in)

and keep up with his experiences at guennadi.com

Safe travel brother.

So I am being scheduled for a biopsy under camera guidance. This will mean making a small incision up near my collarbone and sending in the camera to have a look. The samples can then be taken from various parts of the mass as well as being able to visual observe. This will be of course a more thorough biopsy, and hopefully be able to provide some clearer results. I will be under general anaesthetic for the procedure, so at least that makes it less traumatic.

In the meantime, I was scheduled for radiotherapy to start this coming Tuesday, and a simulation is booked for Monday. I am still going to go ahead with the simulator, but the radiotherapy is being deferred until results are back.

Physically, I am feeling pretty good. I have walked to work the last two days and my chest is less sore. My headaches are generally consistent but we are going to leave checking that out until this chest thing is sorted. I am feeling pretty healthy really, and all my bloods are in good shape. Nothing else really is affecting my day to day, and having energy back since stopping Thalidomide has been fantastic.

Libs has been taking the brunt of this though. She has had a particularly busy week at work, is still recovering to some extent from the flu, has only been sleeping with the help of sleeping tablets and has not been able to catch up with people much for lack of time and energy. This has been the area where I have felt helpless. I have not been able to work more than a week or two straight in the last year or so, and this is incredibly frustrating. Now, I need to have a clean run so work can get started. I am really excited by it all, and when the time is right, I will show and tell more about what I have been working on during the last 18 months or so. It will be good to bring a bit of balance back to the force.

I think I would really struggle if treatment needs to continue in the next few weeks. It would be very disheartening.

The report looks good at first, saying no malignant cells are found, but it doesn’t rule out the need to keep looking. It states the possibility of there being a tumor that may have been missed and there being a blood clot around it or in it. And there are still a few other things to check out around the site and still in the sternum.

As with all the results I get from tests, we have been getting used to not getting too excited, as it is just too unpredictable. So this good news comes with a warning, in that there are still things to look into. To be honest, I am very relieved this information points to a great outcome, but only because the results are inconclusive. It basically says we didn’t find anything in this sample, but it could be this or this, so test this.

So it will be more clear when we see Dr Brad, hopefully in the next few days.

Until then, I am calmly grinning cautiously, knowing that it is a good result, but there is more stuff to check out.

Will be letting this sink in a bit and providing details later.

My sincere gratitude for your prayers.

Anyone want to go to the beach? It’s a beautiful day outside. I think I might head to City Beach around lunch time.

Talking of meeting, we will be starting a regular get together at the Brisbane Hotel, on the corner of Brisbane and Beaufort in Perth. If you are interested in just coming down and hanging out, tonight, 7:30.

I have just got off the phone to pathology and the results are not conclusive yet. Some results are through, but the report is yet to be finalised. We are expecting to wait another day.

We are honestly running on vapors at the moment. We had quite a full weekend on top of our unwelcome habit of not falling asleep until 4am on average. It is ok for me as I have no commitments the next day usually, but Elizabeth heads into a week completely frazzled on every level.

It will be good to have this time pass.

UPDATE

Introducing Stella Rose Bain

I guess we make it a little easier for him, as he knows we read the scan reports ourselves before we see him. Between Elizabeth’s brain, our medical dictionary and my habit of breaking words down to their Latin or Greek roots (often completely made up on the spot), we tend to have an idea what the report is trying to say. For example:
“There is a large multi lobulated ovoid mass located posterior to the manubrium and upper body of the sternum located anterior to the ascending aorta and pulmonary outflow tract extending to the superior aspect of the aortic arch and the origin of the great vessels” (and another 20 similar sentences following) could simply read “Something’s in his chest, best get it out”.

Dr Brad was moving swiftly arranging our next movements and drug authorisations. I couldn’t help but wondering if he felt let down by the seemingly poor results of my stem-cell transplant – like something under his control didn’t go according to plan.
I know there must be patients out there who do see the Doctor as being responsible when courses of treatment aren’t successful. They may feel like they need to blame someone, or find a valid reason for unfavourable results. I have heard such bitter stories.

I hope my Doctors never feel this way, because there is nothing further from my mind. I think this is an important aspect where faith pays up in the here and now.

My approach to my sickness and the healing hoped for is not just about science. For me, I can’t escape the affects of a broken body in a broken world, the power of prayer, and a merciful and all-powerful Creator. This is mixed in with the science of human anatomy, chemical/radioactive responses, diet, lifestyle and the involvement of the mind.

If I relied purely on science, or the known, I think I would be justified in demanding logical reasons as to where unexpected tumours came from and wondering whose fault it is that it is there, again. But my response the other day was nothing like that.

I ultimately believe that God is in control. I am not talking about the god of popular belief who seems to be included in conversation just to blame for suffering or thanked at the Grammys. I refer to the God who doesn’t just show up for humanity’s extremes, but who presides also in the day-to-day, in perfect control of a broken world. What goes on inside my body and outside my body shows the characteristics of this broken world, not a broken God.

As yet, I have had no reason even consider that things not going to plan are due to a situation being out of this control. While Doctors do their best to work with what is scientifically known to control my body, I believe there is more going on behind the scenes.

If there is one thing that all my specialists would agree on, it is that I have been one patient who has flipped every expected outcome on its back. At every step, and usually at every consult, we deal with something out of the ordinary of ‘the known’. People have given up trying to predict what my body will do next (I tell them I’ve struggled with this all my life). But I am learning that it is in this chaos I can feel a profound sense that I am being looked after, and looked after well.

When I had the biopsy this Tuesday, something happened which took the Specialist by surprise. When he drew back for the aspirate, it drew blood. “Hmm, vascular” he said, with a noticeable element of wonder. He repositioned the needle and took another sample and it drew blood again.

He finished up the biopsy and said that the sample taken looked like blood. “Now there is the chance of course that the cancer cells are mixed in with this blood, but, to be honest, there is a chance that this tumor is actually a big blood clot.”

Thankfully, I was laying down already when he said this. It needs to be said that although the sample taken was different enough to indicate this possibility, we have not received the results from pathology. It was enough of an event though to make me grin. The hope that this situation would get better was alive and well.

So for the last two days, we have been having to wait in eager expectation for these bloody results, we hope. For the last two days we and few others have been contemplating the possibility that this may be the break we are waiting for. For two days, I have felt great, as I have probably gone too far in letting myself believe that the tumor is just a blood clot. The devastation we felt last Thursday and Friday will be repeated again if it is not a blood clot. It is for this reason we have been quietly waiting for some confirmation of outcome.

I am acutely aware that by having people walk beside means a willingness to go through the emotional ups and downs of this disease and I am hoping that the time between me posting this and the time we find out results will be short. But it literally felt unfair to put people in the emotional washing machine that has been the last two days – longer than we were expecting to be here ourselves. I was hoping to find out the results soon to present it in one hit. But the wait continues. Hopefully there is only the spin cycle to go, and we’ll find out before the week’s out.

Aside from this, I am actually feeling really well. My energy is returning very noticeably as the Thalidomide wears out of my body. My thoughts are still quite cloudy, there is an ongoing headache and pain in my chest. But they are all improving, and I am moving spritely throughout my day. I met with a close friend today and he was surprised at how well I looked and functioned, so I am conscious that those who read these posts may get the impression that I am quite sick or something. I am hoping to be back dancing to early eighties classics in the privacy of my own living room before too long.

In the meantime, there is a far more exciting waiting going on for us at the moment, and that is for the arrival of a new niece or nephew due this Saturday for sister Carms and John. It was Dad’s birthday yesterday, a baby may come over the weekend and Fathers’ Day this Sunday. So we are looking forward to a good time with family.

There are two kinds of gowns I am familiar with. One has three arm holes in it – yes, three, and yes, arms. I am not sure how many other people have embarrassed themselves trying to squeeze their head through the middle arm hole, wrestling about half-naked in a change room with the flimsy floral curtain does little to contain the frantic gasping breaths that accompany claustrophobia. But I know a friend of mine has. Um, then there is the other kind of gown – the one that if you do happen to put it on back-to-front you get to the lowest and final tie before thinking, “Hang on, that can’t be right! Surely?” It happened to another friend of mine.

There are few things in this world that have the power to annul social standing, economic welfare, education achievements, professional accolades or culture affiliation. The hospital gown, with it’s mysterious powers, seems to achieve such disarmament with incredible ease.

After many frustrations experiencing what a hospital gown allows to be revealed to the world, I think it is not recognised enough for what it can hide.

Day-surgery patients, whose conversations rarely get to the next level of conversation after hospital food and the weather, may be in conversation with others they would never know how to relate to in the real world. Every attempt to identify yourself in society has been left behind.

You can’t even vary your garment. You can’t roll up your sleeves to say you’re relaxed at the end of a day, you can’t unbutton your shirt to say you loved the 70′s, you can’t roll your skirt up to show off your legs. It is how it is. You become refreshingly un-categorical. People’s response to you then has to rely on your countenance and the words that you speak. You come away feeling more connected with people than you expected, and all without having to present your identity through what is worn or adorned.

Such is the power of the hospital gown.

The CT I had yesterday for planning the radiotherapy went well also.

A lot more to say, but my mind is struggling, my body is way over tired and my belly is full after lunch. The perfect afternoon for a sleep.

It was about this time last year that I was having my scans done so they could plan my radiotherapy. This involves a CT scan and a lot of measuring. This time, they will be going to radiate through my back as well as the tumor is situated pretty much smack bang in the middle of my torso. The down side to this (like there is an upside) apparently is that now the radiation needs to pass through more of my chest wall and sternum from the front, and then through my spine, esophagus, bronchial tubes from the back and it will affect my lungs somewhat. Last time, it took about two weeks between the planning scan and the radiotherapy to commence. So that will be my Monday.

Elizabeth has been sick all week really with the flu and generally run-down. Thankfully she has Mondays off anyway, but it is taking a while to shake this one. We have been able to take a bit of rest over the weekend though while everything sinks in. I don’t know how to describe how we are feeling at the moment, and we do feed off each other a great deal in the way we respond.

In the last 48 hours though I think I have been able to make the mental switch to at least take on this next week. This is so far from what I was expecting to be doing four days ago. Part of the significance of getting away the other week was to kiss the last year goodbye and start the new chapter. Now it just seems like a pick-a-path book where I’ve hit the same crappy page for the second time.

Underlying this seemingly coping attitude lies a tough conclusion to come to, and that is the hope that we had a year ago is the same hope that we have today. It hasn’t dwindled because of the events that happen along the way. If it does, then it doesn’t deserve to be called hope. There will be an appropriate time to put the hope for this situation to rest, but it is not now, nor should it be anytime soon.

As you were, in hope and faith. And thank you for being so.

Dr Brad is certain that the myeloma has returned as a solitary cytoma, but I will be having a biopsy under CT next week to confirm that. It will also give us information about what kinds of treatments will be most effective down the line.

Everything is moving swiftly. Straight after seeing Dr Brad, we went to see Dr Mandy, who was my Radiation Oncologist last time. She was pretty disappointed to see us back, but what can you do? She interpreted the CT’s that were taken yesterday for us. The tumor is in the soft tissue between the lungs, pushing on them and the aorta. This explains the breathlessness and chest pains over the last few weeks. I will be having another CT Monday at the hospital to so they can plan the radio regime. It will be five weeks again, starting as soon as the planning is complete.

I will begin back on steroids and some other drugs fairly soon. I can understand the response of “If it didn’t work last time, why go down this track again?” – it is a thought that has crossed my mind more than once. At this point, the tumor needs to be reduced in size, at least to give me more comfort. It will also provide time to consider other options. But for now, it is once again time to act quickly.

We are going ok, and our approach is to stick to things we have planned as much as possible. We have tried to maintain a calm acceptance of this news, although it has been quite unexpected and disappointing.

I am very mindful that I have some dear friends who are going through tough treatments at this time too. I am sure they are as thankful as I am for the people who support us. I could never convey how much it means, but thank you.

Libs has been home sick this week so we were both home when we got a call from Radiology. They had told me this morning that the results should be ready by Monday, but they called about an hour after I left, just as I was trying to fall asleep. They rang me to tell the results were back and we could pick them up. About the same time, an email came through from Dr Brad asking if we could come in first thing tomorrow morning (Friday).

I tried to get back to sleep. Later on in the afternoon we headed into Radiology to pick up the results and we read the report. They have found a new mass behind my sternum that is quite large (about 7 cm). It is in between my two lungs and pushing on my heart with possibly lymph involvement. There are also several small fractures in my sternum again.

It all adds up really, well most of it. I haven’t been able to breath deeply for a while, there has been increasing pain in my sternum and the pain in my thoracic spine may be connected in some way.

While writing this I just received a phone call from my friend in India. He assured me that he has got all of India praying for me so I am not to be discouraged. For those who know “The Major”, we would not be surprised if he is serious. He is a major in the Salvation Army in India and it seems he actually knows most people in India. I am sure he has seen his fair share of miracles in his time, so he knows what is possible. The call was timely.

Our appointment is first up tomorrow. I will put other info up as we find out what our next step is.

I had the time, so for the next hour I had to drink an iodine solution and then have a CT where they again injected and iodine-based solution into me. He said it was to check the lymphatic system, circulatory system, digestive and renal systems. I am not really sure what they were looking for at this stage, but I suppose it will be good to have it all checked out anyway.

Back home now and very tired.

“In Prayer, God’s presence is never separated from his absence, and God’s absence is never separated from his presence. His presence is so beyond the human experience of being together that it is quite easily perceived as absence. His absence, on the other hand, is often so deeply felt that it leads to a new sense of his presence”

There are so many references throughout the bible, people begging God to ‘show up’ in ways that are tangible and meet their expectations of meeting together. It is easy to see why people get fed up with God not ‘being present’ when we expect him to be present the way we are use to people being present. Nouwen goes on:

“When God himself in his humanity became part of our most painful experience of God’s absence, he became most present to us. It is into this mystery that we enter when we pray… Although at exceptional moments we may be overwhelmed by a deep sense of God’s presence in the centre of our solitude…, more often than not we are left with the painful sense of emptiness and can only experience God as the absent God…The mystery of God’s presence, therefore, can be touched only by a deep awareness of his absence. It is in the centre of our longing for the absent God that we discover his footprints…”

Now I can understand that this may sound like an explanation by some theologian to cover for God not showing up, like parents who make up excuses to explain why Santa couldn’t hang around and chat Christmas Eve. But in the context of the rest of the book, in the context of our limited expectations, it does begin to make a little sense. It is comforting for me knowing that the absent God is not just my God, but he has seemed absent at times to many.

I did not really know how I wanted God to be present to me over the week either. Was I expecting he would make me a cup of tea while camping or spell my name out in the clouds? It would have freaked me out even more than Bigfoot if he had appeared as a being incarnate able to talk face to face. In many ways, I think by matching up with my expectation of how I thought I wanted him to be present would have not matched up with who he is and who I ultimately want him to remain – with that distinctive attractiveness of powerful mystery. The cloud thing would be cool though.

So how did God show up for me while away? Well, I think I came to some conclusions about the direction of my life that I didn’t want to come to, and I believe God was in that. Instead of trying to work some things out for myself I know that I need to have some serious changing going on, or transformation if you like. The concept of God changing someone can be underrated or even disregarded sometimes. But without it, I can promise you that there are parts of my life I will not survive, all sickness aside.

There is an awareness of urgency in my life at the moment, and it wasn’t really there before diagnosis. I was traveling with reasonable contentment before – you know, work, play, socialize, yada, yada. But there are parts of your personality that can die off when they don’t get dealt with, when they don’t get developed, when they don’t get fed. If I do have limited time, I want to experience this life to the extreme. If I do have limited time, it makes me no different from anyone anyway. I believe we were created for relationship, so that is where I want to experience my extreme. Since most extreme sports will be out for me for some time, I have to get my kicks somewhere.

I hope that this change takes place and I hope that I experience this depth in relationships. A deeper understanding of God will come through it, and that is where his presence counts for me at the moment.

A familiar hometown scene.

When I woke up everything was wet, so I threw everything in the ute (pickup) and headed further south to the hometown where I knew I could find a heater, bed, shower and roof at Aunty and Uncle’s. As we always do, I started to do the drive around the hometown to see what has changed, what hasn’t, and count how many round-a-bouts have been added since the last visit.

I drove past the house I grew up in, very slowly. There was a guy standing out the front. I turned around and drove back past it, very slowly. He came up to the road to see if I was lost, or casing the joint. We got talking and he was so happy to find out that I lived there. We talked for ages and then he invited me back to the house and showed me around. I met his kids and he proudly showed me through the whole house. I haven’t set foot in there for 16 years, so it was actually an incredible feeling.

We went down to the shed and he said, “Look at this”. He moved a bookcase away from where we used to keep the paints. It was like a time capsule. The same crusty paint tins were still there – I recognized them. I could have been seeing the same thing 16 years ago. It was just a really amazing feeling anyway. The guy said if we are down there again we would be welcome to stay there at his house anytime. Country hospitality.

I am assuming there are a few people who understand how something as simple as this wizzydiz above could be the highlight of a town for way too many years. Some towns don’t even have this much. Oh yes, we had it good.

I have been taken off the Thalidomide as this can damage nerves and we need to eliminate this factor. I have pain in my right hip, lower lumbar, upper thoracic and again in my sternum. It hurts to breath deeply, lay on my side, walk, sit upright for extended amounts of time and any general movement is an effort. My body feels heavy. The good news is that I have lost a bit of weight already. I have been eating good food in smaller amounts over the last two weeks. I had a hot dog the other day and my body felt like it was going to reject it. A good sign.

I have also been doing a bit of research into complimentary treatments, alternative treatments and different philosophies on causes of cancers like mine. I am open to consider most things, but when I came across the book that promoted the coffee enemas, I started to back up. I mean, it is painful enough when I burn my tongue on a hot cuppa. It raised so many other questions. Do you still get a complimentary macaroon? Does an ‘espresso’ or ‘long mac’ refer to the time one has the procedure? Do they use fair trade coffee beans? Will it keep me awake at night?

I went away basically to reset my thinking, draw some lines in the sand and set some directions for this next chapter of life. For a year now, I have been in active treatment. For nearly two years, I have been sick. Most of the decision-making has been related to survival. These decisions are usually straight forward as there is the matter of urgency and the consequences are clear. “We can buy more time if we do this”, “Okay, let’s do it then”.

Beginning remission was permission to start a new chapter. I was hoping to get stuck back into work and begin living again with some hint of normality. It was like all the ‘normal life’ problems and decisions that had been put on hold for a year were now waiting to be addressed. Some of the issues needed to be addressed in light of the consequences of the diagnosis.

These are some extracts from a prayer I wrote on the first night. I was PUI (praying under the influence) of a bourbon or two and I was really hoping that God would drop everything and speak to me clearly.

“Well God, it’s time to stop playing ‘hard to get’, and I will stop playing ‘hard to find’. I know you have had an unfair advantage anyway, being omniscient and all, you always know where I am. But that doesn’t stop me from thinking I’m hidden from you sometimes.

So why do I choke up when I write this? As far as I am concerned, you have never not come good. Late, in my opinion, yes. Cryptically, yes. Painfully, yes. Faithfully, yes. I am just saying this to remind me. I am at the pointy end now. I am ready now. I am either ready now, or you’ll have to find another disease to get my attention. Please don’t take that seriously.
So I am asking you to meet with me severely. I don’t have time to play around I feel. If someone really wants you to meet with them, sometimes you leave them hanging. I don’t want you to do that now.”

This is what my view was while praying. Yes, you would have your eyes open too.

You may get the sense that there are other stories that go on behind the main story, and that is the case here, but I think that is not to be unexpected in anyone’s lives. The cancer is one thing to deal with, but even people who are sick have to tend to the things that we all deal with from time to time. The past year of treatment has resulted in some things being put aside for a time and some new issues to arise due to the new circumstances. It is now time to get back into this aspect of reality.

I know going away alone at a time like this may seem strange to some, but I knew it would be beneficial, and Elizabeth graciously agreed to let me go while she kept the home fires burning. Doing ‘solos’ was a common practice before I married, usually when I needed to reset direction in my life, contemplate something deeply, try to work out what God would think about something, or just reset my sense of place by getting back to the bush. On this trip, I needed to do all of these, and more.

I used to sleep in the back of my car, in the sand dunes at the beach, in my swag by a river or just in the bush somewhere. I would choose a place to minimize human contact where I wouldn’t have any distractions. Don’t get the wrong idea though – being completely alone in the bush is not something I like to do for relaxation. I have seen too many documentaries on Bigfoot as a kid to be able to relax totally, so I usually am not too far away from other human contact, just in case any hairy mythological creature does decide to become a reality. It can happen.

I will share a bit of what went on while I was away over the next couple of days or so. It is a bit of a progression and a bit much to hit in one post. For now, this is the road through the bush where I set up. Meet you there later on.

As for health and well-being, things are once again not that flash. I have just sent off an email to Dr Brad with a list of pains, sensations and concerns that have become too prominent to ignore. I will go into the details later if necessary. But for now I think it may just be one of those weeks where my mind makes the mental shift to check my body over to health care professionals to do their thing.

Not wanting to make it sound trivial by the brevity, but this last couple of months has been the most difficult I feel, even compared to the last year of active treatment. It would be similar in some respects to the Olympics (pretend for a minute that I would know). For two weeks you are in intense battle. You have direction, you have drive and you have tangible results. Then the games are over and you get sent home. You are left wondering if it was just a dream, and begin to wonder how the hell you are going to slip back into a normal life, dealing with normal life stuff.

When you think post-treatment progress should be the most appropriate time for celebration, you may feel despondent, confused, depressed and cautious. It is not the same for everyone, but I think a lot of people experience it. More to unpack on this.

Overdid it at the gym on Tuesday, still sore.

Have been spending a lot of time working on promotional material for the silver business and on the education project. Getting quite excited by both.

Have been experiencing quite a lot of back pain lately. A sharp pain between my shoulder-blades and constant pain in my lower back. These were exactly the same symptoms I was experiencing prior to diagnosis. I am not too worried about them, I think now that everything has subsided, the pains that I have forgotten about are more noticeable again.

Walking is once again becoming difficult (partly because of back) and my right leg has been hinting at giving way at the hip. Makes it very uncomfortable to put weight on it.

Elizabeth is still as amazing as ever.

I will be away until sometime next week.

The weather at the moment is nothing short of superb.

My diet is going very well. So far, I can’t actually remember the last time we ate at home for dinner, but when we did, I cooked loads of vegetables. I am snacking on a lot more fruit. Beer has been cut out of the diet, wine is still acceptable (but still getting strange looks at the bar when I ask for a pint of house red), trying to only eat whole foods and avoiding anything that contains numbers. Thank you to those who have given recommendations for diet and well being. I will let you know how things go.

Enjoy the weekend.

Amongst other things, I have been spending some time working out what kind of things I need to consider in order to stay well, or in remission. As I understand it, the remission that your stem cell autologous transplant gives you tends to be the most effective. My intention is to get the most out of it as I can.

I have talked to a few people about diet and other lifestyle choices that may be beneficial in regards to building immunity and staying in remission. There is a lot to consider and I haven’t really made a decision yet about going hard-core on anything apart from generally eating healthy and exercising.

Elizabeth went to a presentation last week by a haematology professor and found it very interesting. He was presenting information on the shift toward boosting immunity to fight blood cancers, rather than tackling them ‘traditionally’ using chemical or radioactive approaches. The body’s immune system is an incredibly powerful system, so more research is being put into developing ways to increase immunity so that the body fights off the cancer naturally. Makes perfect sense, really.

After chatting with a few other cancer patients, I thought it was about time that I took this phase of life more seriously. Many of those who I talk to are on different diets depending on their cancer or stage of treatment. I have taken the approach of eating and drinking purely for enjoyment. But this last week I started to think that I should not take a passive role in this next phase. It would be easy to resort back to my normal lifestyle where nothing really concerned me in my diet and fitness, but I think I need to take a more proactive response.

My goal is to lose about 10 kilos, build up some strength and try to increase my energy levels. Hold me to it.

(This post may mysteriously disappear and any recollection of content denied at will)

On hearing this, I felt flattened and feel my acceptance of these situations has run out.

Enough is enough.

It was a fairly low-key event. No need for gowns and tassels, no walk across the stage, dip cap, shake hand, grasp degree or smile for photographer. Just a simple logging in to the enrollment website, click on the option that says ‘Withdraw’ and then confirm the decision. I feel as relieved as I did when I have actually graduated the traditional way, not that I have ever actually turned up for the ceremonies.

Okay, so technically I didn’t graduate. It was more of a case of freaking out. I went to classes yesterday and it became very clear that I was not up to it. The defining factor was looking through the unit outline and reading the word ‘Assessment’. It was like an epiphany where I realized I am so not ready for this. The last thing I want or need right now is an assessment. I started giggling in class because of the anxiety. I thought ‘Why the hell am I here, putting myself through this?’ I was about to walk out mid-session, but thought I would squeeze the class for all it’s worth to get the most out of the free tutorial.

Coping with life’s decisions during this stage is proving extremely difficult. It is a more difficult time than the last year of treatment, to be honest. At least with treatment there is a plan, and to some extent a lack of freedom. You take this drug, you have this therapy, you inject this, spew that. There is no need to analyze the situation at that time. No need to work out the toll it is taking on your mind, your body, your spirit.

I get the feeling that is happening now. With freedom comes a freak out. I don’t know if it is a common thing to experience in this situation.

Later on this afternoon I went to a farewell for another friend who heads off tomorrow to Melbourne for a drug trial for the next three months. Her stem-cell transplant didn’t result in remission, and we both want to avoid the next stage of stem-cell transplant (involving matched donor) as it is more unpleasant and less effective than the kind we have both had (where we are our own donor). She has had to up and leave home, move to a new town and participate in a trial program. Thankfully, the trial has resulted in some good results in others, so we are all of course hoping for the best in her situation too.

These girls are vibrant, positive, young and they look amazingly healthy. They will be the first to admit they don’t cope all the time, but I feel they have had to deal with far more traumatic circumstances than I have to date. It is not about determining the degrees of difficulty for different people’s situations, but in the same way I feel like I have got a lot to learn before I tackle my future steps as courageously as they do.

So I started doing some post grad studies in media at Edith Cowan University just up the road. I got a little nervous as I hadn’t been sent any information or letter of offer from the uni. Apparently it got lost in the mail. Mostly got things sorted though, and attended my first lecture today. I am still not sure about whether I can get into one of the units, but will find out tomorrow.

One thing I was very relieved about though was having a decision made regarding working at the uni. A research position was available and I went for an interview last week and I let them know that I was only able to work one day a week. Ever since I had the interview, I have been getting anxious about how I was going to manage study, the workshop, my education project, and my recovery – which I have been leaving out of the equation lately. After all, I am better now.

Thankfully, they called today and said they really needed someone for three days a week. I was quite relieved. If they had of offered me just one day, I think I would have reached the point of overload just thinking about it. It would have been another decision to make, now I don’t have to make it. The job would have involved stats, number crunching, data analysis, reports etc. Yes, I know, sounds perfect for me, but for this time I am happy to leave this opportunity for another gifted mathematician.

After uni, went over to Rach’s place to catch up as her and Michael and Angus have spent the week in Sydney. Angus went to the doctor today and it has become clear that he needs to have surgery quite soon to rectify a problem in one of his kidneys. It was a problem identified before his birth but seemed to be fine in post birth tests. So that will be a big day for little Angus. He doesn’t seem to be in any discomfort though for the time being, and it was semi expected in a way.

The lethargy that I have at the moment is becoming more difficult to handle it seems. By early afternoon I find that I am just yawning uncontrollably and can hardly remain upright. I was only at Rachel’s for a short while before I had to cart myself back home again for a sleep. I am still kind of wondering if I have taken on too much this semester. What the hey.

These last few weeks have highlighted for me the need to get back into decision-making mode again. For the last year, it has been a case of following a course of action influenced heavily by informed practice, treatment regimes, stints in hospital, physical ability and tolerance to pain. This kind of removes a lot of the variables that come into day-to-day decision making. Now it is time to get back into doing my accounting, handing in assignments, managing time, developing business plans etc. I liked it better the way it was. Actually, not really.

I tend to chuck a hissy fit once I hit critical retail overload. It has happened on several occasions where I feel just so bombarded by materialism that I feel sick. I would like to think that there is a noble reason for this, but it usually occurs after I have bought what I want and then just want to get back to the hotel to sip Martinis by the pool. Anything to avoid the affluence.

Yesterday was Elizabeth’s Birthday, so we started the day catching up with a good friend Nicole who I used to tutor with at Murdoch Uni. She was in Singapore this same weekend with family, so a great opportunity to meet up. We then tootled off to the Singapore Flyer, which I think is the biggest observation wheel in the world – very impressive. I think I spent as much time trying to work out the engineering and construction of the wheel as I did looking at the view.

It was then up to the 70th floor of the Swissotel for cocktails and sunset view before finishing up with Tapas for dinner. Quite a memorable birthday. The other things we were able to get to during the weekend included the night safari zoo tour and the National Museum (this makes us sound old). We had a really great weekend. I think I could very easily live there.

I really felt a new level of tiredness over the weekend. Very rarely to I get to the point where I feel semi-conscious while walking around or sitting on a bus. But this was happening daily it seemed, it feels like my thalidomide may be catching up with me. Still, we took time out to rest as much as possible and I continue to work out where my limits are. Now it is good to be home again and enjoying the winter rain.

The Raffles Hotel

Yes I know, missing the hairy chest and gold chains.

Night Safari

The new site will be specifically for writings that may appear weekly or more frequently perhaps. Topics will be varied, but will include categories of faith, beliefs, culture, politics, etc. and anything that irks or inspires.

So feel free to head over there sometime. The addresses are:

www.camharris.wordpress.com or
www.cammarshallharris.com

or you can just click on the link in the blogroll in the right hand side column.

See you there.

I don’t know if it is everyone’s experience, but the connection that one can feel to another human being in charge of their treatment can be quite profound. How do you thank a doctor for stopping you from dying so soon? How do you convey gratitude to a person who puts in 20 years of study, work and research to get patients like me enjoying more of life?

I have only really known Dr Brad for less than a year, but he has obviously become an integral part of my world and it is highly likely that he will continue to be for the rest of my journey. I can honestly say that he has the compassion and personable nature to match his brilliant medical skills. We could not ask for anything more, though with him, we get it.

Other than that, these last few weeks have been spent coming to terms with a new chapter of living, and hopefully living without too much treatment. In this, decisions have had to be made regarding how to spend my time and how much my body can physically cope with. I was getting ready to fire up the silver business a bit more, but after doing an order last week, I don’t think I could take on too much physically, not just now.

So at the moment, I have decided to continue with the silver business as is and continue developing the educational website. I am also going back to Uni part-time doing a Grad Cert in Film and Video. The focus is on documentary production and I am pretty excited by the course outlines. It just seems the perfect time to do some learning – something to get the mind ticking over while the body takes its time to catch up.

I have also started another website that is dedicated just to writings about various topics. I decided a while back that I didn’t want to have a crossover with The Walk Beside as it mainly deals with a personal experience. These other writings will focus more on opinions and questions that are good to get down on paper, or pixels. I am still constructing it at the moment, but should be up next week.

For the record, my hair is growing back. Yes, everywhere where it is supposed to.

Tonight I decided to look up a particular song by Pink. Each time I hear this song on the radio I shudder and get chills up my spine. The passionate resonance of her voice, the message and the harmonies just grip me every time. Songs like this make me feel like I am having a spiritual experience. I admit that I get the same feeling with Van Halen’s Jump, Stevie Ray Vaughan’s rendition of Little Wing, Vangelis’ Chariots of Fire and a few Meatloaf songs, but when a song can bring about a physical response in me, I think it is doing its job nicely.

In my late teens I used to detach the speakers on my stereo to give me surround sound, turn the lights off and crank up tunes like ‘Lenny’ or ‘Little Wing’ by Stevie Ray. I would just let them repeat over and over. They are both instrumentals, so it wasn’t the words that moved me, but the melancholy mood of the music would soothe me beyond what I can describe. A passionate voice can do the same for me. Love it.

Whenever my melancholic mood swings into action, it is often accompanied by me putting on some appropriate soul-stirring music, or playing some soft tunes on the piano or guitar in the dark. Often I imagine that I am in a movie, walking down a city street wearing a big winter coat while it is pouring with rain, the music playing like a soundtrack.

Please tell me it is not just me who does this.

Post script
On this subject, and after getting back on Youtube, I couldn’t go past putting up Ben Harper and The Blind Boys of Alabama. My suggestion, put your speakers either side of your head, and turn off the lights.

It was in stark contrast to this time last year, when we received the news of my diagnosis just 3 days before. At that stage of diagnosis, it seemed that the worst-case scenario was underway as the specialist at the time told us that things did not look good. Our last anniversary, therefore, was quietly understood to be our last anniversary. It wasn’t until a week or so later that tests showed a more workable prognosis. It was a crap week.

This anniversary went a lot better. The recent good results have painted a better picture for the future and we were able to consider the year ahead as being more positive that the year that was. Other events of the weekend included getting stuck in an elevator with Miss Universe 2004 Jennifer Hawkins (Okay, not ‘stuck’, but it does sound better than ‘catching’ an elevator with Jennifer Hawkins. Whatever the case, it would be fair to say that we both felt the earth move, as you do in elevators). Friends took us out for a tour of the city in a limousine, we were able to catch up with family and we did our fair share of eating out at some very cool cafes, so it all made for a great time away. It was good to do something different to break the memory of this time last year.

There is no way I could have got through this year so easily without Elizabeth. I feel it is her that has had the difficult year and I have had the easier role out of the two of us. As can be imagined, there have been some very tough times, but through it she has not flinched. It has not just been the case of just being well looked after, but more about how one can put every aspect of their life into making another feel completely loved and comforted. Elizabeth has made this into an artform.

More to write on this later.

Libs and I are out of town for a while. Back sometime next week.

“There has been a marked reduction in size and degree of hyperintensity of the previously noted large myelomatous deposit in the distal femur and there has been complete regression of the previously noted smaller lesions within the proximal femur. A soft tissue focus of high signal is noted in the posteromedial soft tissues of the popliteal fossa but is likely representing a recess of the semimembranosus bursal effusion.”

My spell check has just gone into meltdown, but as it plainly indicates, things are on the mend.

Just after lunch today, Elizabeth and I were able to take a few minutes and lay in the sun up at Kings Park. Perth is set in a beautiful part of the world. Even though it is winter, it was a sensational sunny day today, and there is no better place in Perth to spend such a day than at Kings Park.

The topic of conversation was how to spend time. A simple enough question usually, but if you actually approach this question as if your life depended on it, it can become quite difficult to answer. Well, I have found it difficult.

So I ran a few ideas past Libs, things that I have been thinking about over the last few years that have become clearer in this past year. None of them are a surprise to her, because I talk about them all the time, but some decisions need to be made soon. It is probably an exercise worth doing every now and then, at different life stages and according to varying circumstances.

So I saw Dr Brad who kindly saw me without an appointment, got my requests and went and had a blood test. Then shot up to see a friend who is setting up house after arriving back from London. Then woofed down lunch before catching up with some of the students I used to teach up in the Hills. I am constantly blown away by them – an amazing group made up of amazing individuals. They are great testament to their parents’ approach to family and education. I have learned so much from them, and working with them has been a true professional and personal highlight. Now I am not their teacher, so it is just a privilege to hang out with them as friends. I want them teaching and influencing my kids, no doubt.

Shot home after that and picked up Libs before heading home for a 20 minute nap. Another friend, Sal, came over to go shopping with Libs, and I needed to look for a jacket so I went back into town for late-night shopping with them. To finish off the day, we ended up at a restaurant for the best steak meal I have ever had, I do believe.

Arriving home, I just crashed physically. Quite a busy day for little ol’ me, and quite a lot of walking. I was on the walking stick all day, and I have had a blowout on the rubber foot of the stick, so it is down to the metal. Not so great for walking on tiles, as it scoots everywhere, but fortunately I have another 2 spare sticks. Thank you E-bay bulk buying.

I don’t usually like just writing about the details of every day like this, but it was just a really enjoyable day. I am less worried about my leg issues and I am loving being around people I love each day. The weather here in Perth at the moment is just fantastic. It is winter but we have had a stretch of 20C and sunny days. It has been just one of those days.

How’s this for real time updates. This photo is taken now as I sit in bed, faithful laptop on the top of my lap, wife by my side, doing her best to ignore the tapping of keys, wearing her light-blocking eye-mask.

Amongst the uncertainty I feel at the moment, I have it so good. For whatever reason, I have landed the best friends anyone could ask for. I believe the saying to be true, “Show me your friends, and I will show you your future.” This has been true in my life in the most positive way possible.

When I was reading some literature on Multiple Myeloma in the early days of diagnosis, there was a section headed “Positives”. In the light of this disease being incurable, it said, “Most patients with Multiple Myeloma report that they feel closer to family and friends after diagnosis.” You know what else it reported on the positives? Nothing.

However, I have found this to be true. And if that is the only positive able to be identified, then that is good enough for me. With the friends and family I have, it is me who is getting the good deal.

It has been a while since we have had to deal with the ‘uncertain’ nature of diagnosis. For the last six months or so I have had treatment for what we knew was there. Now that I am supposed to be in remission, I have been reminded that living in limbo is still going to be a constant. It is once again going to be a real decision to live life without this hanging over my head as much as possible.

It has made me wonder about what sort of decisions I would need to make in the event of another unexpected hurdle coming up. It is all very well to say that we’ll cross that bridge when we come to it, but there are consequences for not thinking ahead too. At the moment, I am wondering what consequences will there be if I am lethargic or physically lose more mobility in the coming months? What will I do with work? What plans will I have to change in the future to accommodate the unforeseen?

Our response so far has been to scale back the timeframe by which we plan things. It has become more day-to-day living and being hopeful that we can do many of the things we aspire to do in the coming months. I was kind of hoping that I had said goodbye to my sore days for a while.

On a more positive note, having a sickness like this has allowed me to get in touch with some wonderful people, mainly suffering cancer themselves. I have been keeping in touch with a lovely lady in Florida called Jan who has been going through the same treatment as me at pretty much the same time. Jan is keeping a blog also which you can check out by clicking here.

My leg is still on my mind (not physiologically thankfully, but if it were it would be a lot easier to pinpoint the problem). I feel the pain is getting more noticeable and it is causing me to change my walking and standing in order to protect it and rest it. I have to say, it is worrying me a bit. I don’t want it to be what I think it is.

Our plan is to wait until Tuesday to give it more of a chance to recover if it is related to me walking too much last week. If it is still an issue then we will ask Dr Brad what the next step should be.

I started Thalidomide a few nights ago and I haven’t noticed much of a change really. I am on half-dose at the moment so as to allow my body to get used to it gradually over this week. I am to expect a bit of dizziness, lethargy and possibly nerve damage as side effects. Excellent.

To begin with, we got everything signed off for the Thalidomide regime. This involves reading through some statements and signing off on each one to confirm we understand the side effects and risks. The great news is that Dr Brad just returned from a conference in Switzerland where it was recommended that Thalidomide courses are best kept to 6-9 months. This is great news as I was preparing to be on it for the entire year. So I start that tonight.

We then checked out the report from the PET scan briefly on one of the computers that worked. The scan showed that there were areas of greater uptake in my skull and left femur. We know that there have been lesions in these places before, so we are hoping that the uptake is due to healing still taking place in those areas. I cannot feel the lesion in my skull as I did before, but I can feel something different in my femur. The difficulty is that I am not sure if it is my mind consciously registering that there is something there, therefore I can ‘feel’ something, or whether there is actually legitimate sensation.

At this stage, we are very cautiously using the word ‘remission’. Until something definite shows up, that is the best we can hope for – which is not bad at all. The indicators we are looking for include high-spiking proteins in blood/urine tests, cracking bones, bumps appearing, bone pain and anything else abnormal. So we are again in limbo. I have my next appointment in a month. I am neither up nor down.

We are hoping that there is enough evidence to be able to say that I am in remission. Although remission length can be the same length as a piece of string, it would be great to start off on with a clear-ish bill of health.

All things considered, I am feeling well and looking well. So I am seeing this as a good sign. I am still finding it hard to comprehend the last two months. I walked to work today, did pretty much a full day’s work (mostly standing up) and then walked home. I was expecting it to be more difficult than this. I’m not complaining at all. There will be time for that later.

Most of the people I know who have experienced a terminal illness seem to change, change for the better. Not everyone does I am sure, but most of the people I know have, or they at least come across that way. They seem to ‘tenderize’. They become more observably loving, caring, gracious and focused on important things. Worldviews, beliefs, faiths seem to become more defined and many seem to rest in the certainty of what they have chosen to cling to at the business end of an earthly existence. For those who fear judgement by a clichéd white-bearded god sporting an eternal frown, they may spend a great deal of time on their knees trying to think of everything they have ever done wrong so appropriate forgiveness may be begged for.

I guess this may just be how I perceived these people in the past. Maybe these people continued to struggle with similar things that I struggle with. Facing the possibility of been taken ‘before my time’, I would have thought that I would have succumbed to making the ‘necessary changes’ one would assume to make in these uncertain times. Things like living a clean-living, thoughtful and considerate life, to finish up well.

The truth is, I still struggle with the same shortcomings and temptations I did a year ago, when I felt immortal. I still struggle with the same apathy and selfishness I did a year ago, when I felt invincible. I still struggle with the insecurities and hurt issues as I did a year ago, when I seemed untouchable.

I am not the character I thought I would be in this situation. I remain me, but with the addition of an incurable disease thrown into the equation. I guess it is the lack of change I have noted that surprises me. In this respect, I am glad that I feel comfortable enough to not have to put on a front, sometimes.

So if you come across me in the street and I have a peaceful, loving, tender and sensitive ambiance about me, you can now nod and wink at me as if to acknowledge the secret – I still get angry at things, I still get tempted to make disastrous decisions, I still question God’s methods, I still watch mind-numbing breakfast television as I am too lazy to turn it off. I feel like I am a completely normal faltering human soul trapped in a completely normal faltering human body.

Still, as with us all, it is a work in progress.

“One would think that me being sick would soften my heart to spiritual things, relational things, make me repent like crazy and pursue a holy life. At this point, I think I am more reactionary, remain pissed off at people who have hurt me and feel like I am more capable of pursuing sin than ever before. Hows that?! This should be a fantastic opportunity to get things in order. Instead I am in tension with being a bitter soul and one who feels like I am learning significant things about God’s nature. A strange place to be.

I am beginning to fear a bit more for the future. I fear more for the way I may handle it, rather than how things pan out with my body.”

The process is fairly easy to get through. I needed to fast from the midnight before the scan. This is because they inject a radioactive glucose into you that needs to be taken up by cells, and this is made more effective if you have fasted. As with my other nuclear scans, the radioactive glucose will be taken up in greater concentration in areas where there is high metabolic activity, such as a cancerous mass or where there has been physical trauma.

Once I arrived at Nuclear Medicine, they put me in bed in a little cubicle. After getting settled and comfortable, a Nurse wheels in a lead-lined thermos on a stand with a needle sticking out of it. This needle is then injected into a catheter that had been placed in my arm earlier. Once injected, they turn down the lights, close the room up and let you rest for 40 minutes or so. During this time you are not allowed to move. Any muscle movement will result in a greater uptake of the glucose and therefore mess with the results.

After the 40 minutes, you have to pee to get rid of the radioactive urine stored up, and then head into the scanning room. The PET scanner looks like an MRI machine, but it doesn’t make the deafening pulses, it just spins around in a similar fashion to a CT and MRI scanner. They scanned from just below my knees to my head that took about 25 minutes. Once again, as with all scans, you have to remain completely still. The whole process is completely painless apart from the expected hunger discomfort. The radioactivity dissipates after 24 hours.

So that was my PET scan experience. We are hopeful that when we see Dr Brad this week, the results are favourable. Although my body is still aching, it ain’t breaking, and my energy is getting better every day. I am driving a little again now and on Wednesday I walked into the studio, which is about 1.2 km.

Earlier that morning, before I had the scan, I had to have my bone strengthening infusion. I met a girl there who I had seen at Chemo Gym earlier in the week. She has lymphoma and had the stem cell transplant about a year ago. Unfortunately, her cancer is back and so she is scheduled in for another stem-cell transplant from a matched unrelated donor (MUD Allogeneic). She was all smiles though. This step is tough.

We were both at an information session a few weeks back explaining the process. It has come a long way. They showed pictures of the original ‘isolation room’ where they conducted the transplants a few decades ago. It was a bed in a corridor surrounded by plastic sheeting. Nurses and Doctors would tend to the patient with plastic gloves attached to the plastic sheeting. The patients would be in the bubble for weeks, eating food alone and sending out their bedpans from time to time. Lonely.

We were discussing how much better things are now, and you are generally in a single room and people need to just wash their hands. Even the advantage of using the internet while you are in such treatment helps you feel connected to people when their physical presence may be an infection risk. The presentation that showed the history of the treatment was a good reminder that we are born in privileged times. Hopefully, patients in 20 years time will be able to look back on our treatment and be thankful they were born in privileged times, as they pop into the hospital briefly to take their one tablet before getting back into living life.

Although I am trying to shake my religiosity, I admit that I am clinging onto a ritual that I am reluctant to repent of, and that is watching ‘House’ on a Wednesday night at 8:30. If you are visiting then, you can talk during the ad breaks. If you call up, you will be leaving a message. If you need resuscitation, you will have to wait until the show is over. Briefly, it is a show about a rude, ruthless Doctor who breaks every rule to diagnose and treat tough medical cases whilst being as impersonal as possible. Fantastic.

Last night was the final episode – a two-hour special. To cut a two-hour story short, the episode ends with House’s best friend, Wilson, lying by his girlfriend on a hospital bed. Tubes and wires run to and from her as she is connected to life support after a combination of events leaves her moments from death. House cannot save her, and it is decided that they will wake her from her coma so that Wilson can say goodbye. The moments they shared together before the switches were flicked were just too much for my eyes to hold in. Elizabeth was also watching, and she’s a mess during Herbie Goes Bananas, so you can imagine the floodgate scenario there. When the show was over, we both just lay together on the couch, not saying a word, but knowing exactly what each other was thinking. We were both gently weeping.

Gentle weep number two overcame me this afternoon. A dear friend from the US emailed me today. We worked together in South Carolina in 1998, and so much has happened in 10 years. She shared that her eldest son Wade was diagnosed with Leukaemia in August last year, just a month after I was diagnosed. He has just had his 5th birthday. It opened up a whole other level for me, imagining what this brave young soul has been through during this last year, during this one-fifth of his life. He and his Mum (or Mom) have been keeping an online journal also, so I was able to catch myself up to speed on his journey, pausing only to stop tears short-circuiting my keyboard.

There is something that particularly squeezes your chest up through your throat when you see a young child smiling in photos taken during what I, as a 34 year-old, have found to be very difficult time. I can put on a smile, even when things are going poorly, but the smile I see on Wade’s face is the real deal. Reflecting back to the Blue Ridge Mountains 10 years ago, his precious Mum and I would have never thought we would be in these circumstances, on opposite sides of the earth, experiencing our fair share of gentle weeps.

You are an incredibly brave boy Wade, and I know you are being well looked after. You have significantly inspired someone who lives way on the opposite side of the world, so your bravery is now known world-wide! Now you may need to ask Mom what the words ‘significantly inspired’ mean. But trust me, it’s a good thing.

I am a bit confused as to whether this is the right forum though. I am reluctant to use this site as a platform for other topics other than I originally intended. They maybe issues that I dwell on because of my predicament, or they may be topics that I have been pondering for years. I don’t want to write on my health, just for the sake of writing on my health, if that makes sense. I am hoping to write less on my health, to be honest, in light of hoping to have less to write about. Being wary of this, I think I will just see how it goes.

I appreciate others’ insight into issues that are of interest to me, so please continue to feel free to offer your thoughts through commenting.

But that’s enough about British settlers of the 1700’s, who came out on their boats and largely destroyed a significant part of Aboriginal customs, freedom and safety.

The term “Boat People” in Australia today usually refers to people who cram onto unsafe boats as they escape from atrocities in their own countries, seeking any form of safety they can. I have a high regard for these ‘boat people’. To me, they demonstrate many noble aspects of human character that we would rarely be exposed to had they not landed on our shores and become ‘our problem’.

We have it good here in Australia. We have great infrastructure, healthcare, economy and welfare. Often, this is all taken for granted. But I know that some people would have the expectation that other countries should get their act together and develop a similar society. They see ‘boat people’ as second-class citizens who want a free ride at our expense. Now there is a mentality that is worthy of being a problem.

People are often changed when they experience or are educated to the reality that we often term ‘the third world’. I cannot forget sights, smells and the way of life I experienced in my time travelling and it gave me an inkling into the seemingly hopeless situation these people are in. Tyrannical governments, constant exposure to disease, lack of education, lack of healthcare and dangerous living conditions are often the norm for the majority of the world’s inhabitants. It is disastrous that most of us don’t bother actively helping other humans in this situation, but even when these people make it easy for us by arriving on our doorstep, some people can’t wait to see the back of them.

To me, I can’t imagine the risk, trauma and fear involved in deciding to put my family on a boat in order that their lives may be saved. They are human, like us. They love their families and friends, like we do. They feel the pain of having to tear their lives apart to start again. I picture a father, making the painful decision to board a boat with his family, or sometimes seeing them off. They risk being caught by their government, our government and every force of nature in between. For every boat that actually makes it to our shores, we have no idea of how many boats don’t make it. What an incredible act of love. What an incredible demonstration of hope.

These people are doing everything humanly possible to turn their hopeless situation into one where hope exists, and they are willing to risk everything they have in order to pursue it. In our society, I don’t think we understand the full power of hope because we very rarely need to employ it. Even when we do, our hopes are generally based on things we want, rather than things that will give us life.

So when I see the emaciated faces of the fathers, mothers and children arriving on these boats on the news, I see the personification of love, hope and fear. I don’t think I will ever stop being angry when I hear attitudes from some people who consider themselves ‘legitimate Australians’ when they damn other humans to an existence of hopelessness. In support of their ‘legitimacy’ some will proudly claim that they have heritage tracing back to the First Fleet. Congratulations, I say to them; you are the original boat people.

There is such a lull at the moment in what essentially has been a year of doing stuff to get better. I am no longer ‘doing stuff’, and the lack of action is quite eerie. No batches of tablets to take, no radiation, no chemo, no antibiotics, no antifungals and still no hair. I take one tablet a day at the moment to stop me getting shingles. Thalidomide starts later this week.

I will be at the hospital for most of the day this Thursday. I begin with the infusion for my bone density, and then at midday I am having a nuclear (PET) scan. This will be used as a benchmark scan to compare future scans to, but it will also help confirm that I am in remission.

Now I love Australia, don’t get me wrong. But when you see incredible potential in something, the problems that stop it from reaching that potential need to be identified and discussed. My list includes Reconciliation (or lack thereof – this was prior to our new Government), Parliamentary Talk, Environmental Negligence, The Suicide Rate, Pornography Culture, Education Structure, etc. to name a few. There have been a few incidents recently that illustrate these shortcomings. Harassment and bullying are always on the radar.

During my time as a teacher, I did my fair share of sorting out issues to do with bullying in the playground. I also sifted through numerous programs and information packs tackling the bullying epidemic that seems to grow and change forms with the development of new techniques. There was a significant problem, however, in that all my plans and efforts were sabotaged many times a week and I would feel like we were losing the war on bullying. On of the most consistent saboteurs, I believe, is the Australian Parliament.

I think we are numb to the embarrassment that is our Australian Government during sitting. I cannot think of a better opportunity to demonstrate bullying at its finest than to turn on Parliamentary coverage during Question Time. If you want to see adults insulting each other, shouting over each other, booing each other, heckling and jeering each other, demonstrating classic mob bullying and getting away with it, you need look no further than Parliament House. It is all there. Not only is it tolerated, the members seem to love doing it.

So how do you tackle a nationwide epidemic of bullying? While schools and families struggle to contain the fallout, our nation’s leaders lead the way in how to do it properly. I would suggest that without a change in parliamentary culture and structure, we are going to continue to lose the battle. It angers me greatly to see our leaders setting this high standard of bullying, and there is absolutely no reason for it to remain. This behaviour is like a rancid stench that wafts over every facet of our society.

Another illustration. There is an entertainment show here in Australia that is based on Aussie Rules Football. There are basically a few sporting commentators, guest football players, a comedian or two and a few hosts. The guys involved generally put on their best man-voices and make football sound as essential to life as oxygen. One of the commentators recently pulled a skit where he mocked a female media colleague by stapling a photo of her face onto a mannequin and proceeded to humiliate with various actions including picking the mannequin up by the crotch and groping her.

The host was told to ‘take a break’ from the program, so I watched the beginning of the first show back where this host was first absent. For a good chunk of the show’s beginning, the two remaining hosts admitted that the skit was inappropriate. The remainder of the opening was spent making up excuses for the particular host saying things like the host probably came back a little to early after recent surgery, he hasn’t been himself recently, he really needs a good break, etc. After the barrage of excuses, they guaranteed “It may be two weeks, three weeks, or four weeks, but he will be back! Have no doubts about that folks!” The crowd clapped and cheered. Please.

Can you tell me in what other arena is this behaviour acceptable (aside from Parliament)? Where else could you do this and not be charged for harassment? Is further evidence needed? I am confused, but in the same way it is very clear to me why we have such strengths and talents in harassment and bullying in our culture. Why wouldn’t we?

So I am amazed with how little is done about this. We can count on this being a significant part of our culture until radical changes take place. Some cultures are internationally recognised by their traditional dress, dance or cuisine. We, as a nation, are quickly becoming recognised for our acceptance (and encouragement) of abuse through bullying and harassment. Being abused this way seems to be as Australian as shrimps on a barby.

For my thalidomide treatment regime (which begins next week), the pharmaceutical company requires us to be on two types of contraception. I think between the jigsaw and the laptop, we’ve got it covered.

I am regaining strength, and a new sense of excitement about plans for the future. I am ready for this next phase of living. There is a lot I have held back from writing because it hasn’t been related to cancer or how my perspective has been influenced by its presence in my life. I am hoping to write less about this now as I am hoping there will be less to write about.

I need to get back into the frame of mind where I am not dealing with sickness on a day-to-day basis as a focus. Sometimes, there is no choice. Sometimes sickness is the only thing on the agenda that I have to attend to. Now, that is changing, and hopefully it will be different for quite some time. As much as it makes great reading material, being sick is crap. Don’t try it at home.

So I hope I am not jumping the gun with my expectant dry spell of medical monologues. But can I suggest if you need these kinds of kicks, there are many decent and half-decent medical shows on mid-week.

You may take this as a warning also that I may just start writing on other things. Although it is difficult to remember the details, I did have a life before all this started. So there is my disclaimer. I don’t wanna hear no jibber jabber talk making noises about not hearing no cancer jive. There are other things in life that are just as important to talk about and require a lot less pharmaceutical input. There will be, however, more to write on my treatment, the incredible medical profession and the people around me who make life rich during this phase.

Here’s to health. I am looking forward to being reacquainted.

Libs is back to working half-time and then goes to 4-days a week next week. I can’t say enough about how well her colleagues have looked after us through this whole time. It would have been quite another story if Elizabeth were not working with these people I am sure. So we are incredibly thankful for them.

I am back at Chemo Club gym and it has been great. It is one of those places where no matter how rough your body feels, you come home feeling great for the time spent with the people there and for the good it does your body. I certainly feel that the time spent there has been significantly beneficial for getting me prepared for treatment, getting through treatment, and recovery from treatment. After spending 2 weeks in bed, the muscles start to feel rejected and fade away. Last week, at full pace I was able to do 6 minutes on the exercise bike and 3 minutes of rowing. Today, it was 5 minutes rowing, 30 reps each arm of curls (at 4kg!), 70 reps of seated bench press (15kg), 30 reps on the pec deck (15kg). Hard core.

I am heading into the workshop tomorrow just to get a few things sorted. I am looking forward to getting back into a bit of routine again. The education website project I am working on is making good ground also, so I am looking forward to launching that sometime in the second semester.

The only thing on the treatment horizon at the moment is a PET scan (nuclear scan) and the commencement of the 12-month Thalidomide regime beginning next week. Medical life could get quiet for a moment or two after that, here’s hoping.

So a question came up in the comments about what makes a great Nurse. Great question. In my experience, these things stand out. A good nurse:

1. Uses your name, responds to you personally. This is true of most professions, I believe, but when you feel rotten, hearing that someone acknowledges you by name is a significant entry point to nursing greatness.

2. Pays attention to hygiene. I am bordering OCD when it comes to hygiene, so I take particular notice to this one. I want to make sure that my Nurses wash their hands before handling my medication or conduct any procedures that should be as close to sterile as possible.

3. Act on patients’ concerns or questions. I had one nurse who didn’t know what to do in a particular situation which, of course, is fine. But instead of admitting she didn’t know what to do, she didn’t do anything. It is fine to say, “I am not sure, but I will find out for you”.

4. Make good conversation. When appropriate (ie not during a resuscitation, especially your own) I appreciate getting to know whose hands my life is in. It is just comforting. Some patients may not always want a good conversation however, but I generally do. Warning to patients: no matter how coherent you think you are after a general anaesthetic, or heavy sedation, never, I repeat, NEVER start up a conversation with anyone until you are able to remember your name and address. You will NOT be coherent, you will NOT make sense, and you WILL make a fool of yourself. Trust me on this one.

I am always amazed at the amount of knowledge that Nurses have in order to nurse well. Elizabeth, being a nurse, can reel off masses of information about the human body and it’s treatment – just a huge amount of knowledge and skills. To think that these are the same people that make my bed for me and carry my pee bottles around just seems like the biggest paradox.

So I have the hugest admiration for these people who have taken on this profession. Often it is thankless, always it is underpaid, never is it a walk in the park. There are many other aspects of the health profession, but I have had the most to do with nurses. The things that I have found helpful really apply to most professions, and are based around caring for people in a personable way. Nurses are the main ones who make you feel like a valuable human again, when all the treatment you are receiving makes you feel like a science experiment.

My bloods are good and showing my kidneys are functioning well (they were struggling quite a bit while I was being treated in hospital due to the anti-fungals). My liver function is still not 100%, but it is getting better. For those who like to keep track of how my para-proteins (kappa) are going, they are hovering around 24. We were kind of hoping they would be closer to 0, but not this time.

A comment that hit me a little hard today was in response to us asking Brad about the implications if we wanted to travel next year. He said, “Of course, you have to live! Cam’s future is uncertain, you have to keep on making plans and live!”

‘Cam’s future is uncertain’. That is what is easy to forget, or what I want to forget. I know that this outlook really applies to everyone, but to hear it coming from a person who has an educated understanding of how uncertain my future is was unnerving. I am still analysing how I have responded to hearing that.

While writing this post just now, a good friend just called and told me of her friend of a friend who has MM for 12 years and is still going strong. I really love hearing about these cases, ones that are specific and encouraging. So the things I have heard today kind of balance each other out.

All this still makes me wonder how I want to spend the next chapter of my life. I feel like I am back in year 12 and struggling to know what to do with the rest of my life. We’ll see.

I guess it is more of an issue when I am feeling okay and have no physical pains to remind me, but overall, it is still very easy to disbelieve the reality of what is going on.

Maybe it would be easier if there were a direct connection with a cause, like smoking and lung cancer, where I could rationalise using cause and effect reasoning – then it maybe easier to accept the reality of the situation. But with no known reason for all this going on, it does make it hard. I suppose it is similar to some tragic accidents where a bad set of circumstances results in great loss. It may be able to be explained technically, but rationally it still is hard to accept.

So the question of “Why me?” goes hand in hand with the question “Why not me?” as there seems no way to justify either of them. I know that I don’t want it to be me, and I don’t want it to be anyone. I have had enough for a time. It is just as well because I have only maintenance therapy scheduled for the next 12 months in the form of a tablet. I think I can handle that.

I am going to try and not think about the future treatments. They are more difficult than the one I have just been through, carry more risk, and are less successful. It is one of those situations that I guess we have all been through where you have to get through something that you just hate. You would do anything to get out of it, but you know you have to do it. It is just soul destroying at that time.

I know that when they tell me it is time for the next batch of treatment it will be an appropriate time for my weeping. Not just for the discomfort and the risks, but also for the toll it takes on those around me who get me through. I dislike watching this as much as they dislike watching me go through what I go through. I hope it never comes to this. I really do.

I love a good massage, and today was a big help I think to get my neck pain sorted. The afternoon was then spent asleep on the couch, trying to regain what I lost in waking hours last night.

We are doing lots of birthdays at the moment. Sister Carms on the 4th of May, Angus’s literal birthday on the 8th, Sister Rach’s today, BIL Michael’s tomorrow. Good times.

It’s a big effort, but we are going to try and get back to the gym tomorrow. That is all I have the energy to say.

Goodnight to all, and hello medicine cabinet.

Apart from that though, things are getting better, albeit very slowly. I still have a bit of a chesty cough and no energy. My headaches seem to be getting less frequent and I have learned how to manage them a little better without having to take tablets.

Things are going to be kicking back into action next week. Elizabeth returns to work part time and I get stuck back into some projects. I have got about 5 appointments over the next two weeks and am going to try make it back to Chemo Gym/Club each Tuesday and Thursday. Life may get back to normal, you never know.

Being aware of a God who I believe has the power to heal cannot be pondered for too long before having to deal with the aspect of volition. What determines the yea or nay of God’s decision to heal or not to heal? Sometimes I find it hard to be excited about my ‘getting through’ difficult phases of treatment, when I know for every time I have a winning outcome, there is someone out there with the same beliefs as I who loses the fight. I tend to only be quoted the success stories. People don’t want to go down the line of remembering and verbalising the situations where people with faith ended up deteriorating or dying.

At the time of writing, we are getting news streamed from China where thousands have perished in a horrific earthquake. The nature of the earthquake is understood by those rescuers who weep when they pull the thousands of lifeless bodies from the rubble and rejoice when the miraculous sounds of life are heard under the same rubble. As someone who feels like one of the breathing rescued, I am still mindful of those who didn’t make it and I wonder who dealt me the good hand, and why, and when is the next earthquake coming?

Last week I was talking to a lady who was told she had a maximum of two years to live. That was eighteen years ago. She has put her faith into juicing an assortment of vegetables and riding her bicycle. Now that seems to have worked for her. So I put my faith in an omnipotent Creator and she puts her faith in silverbeet smoothies. It seems we may end up with a very similar outcome. I would be stoked to get another eighteen years!

So, without doubting any aspect of a Creator’s power to heal, can you see where my confusion lies? I am beyond accepting only the accounts of miraculous healings, as encouraging as they are and as real as they are. Where I walk, there is the reality of sad outcomes that are too often forgotten.

I have a hunch that there is much to learn about the volitional aspect of God’s nature. A God who makes decisions. A God who acknowledges the grief as well as the glory. A God who demonstrates mercy through the act saying ‘yes’ or ‘no’. A God who allows a life to be long as much as He allows a life to be short.

An illustration. I was on a professional development one day a few years ago at a hotel conference centre. A distressed mum burst into the conference room and cried for help as her baby wasn’t breathing in her hotel room. Myself and two other teachers ran over to the room and we all sprung into action in our own way. One started mouth to mouth, one started praying over the baby to be raised from the dead and I did all I could to check signs of life, of which there were non. No breath, no sign of circulation and a body that was mostly cold. We knew God could make that baby come back, and as the mother stood by and watched, we all just worked to get that baby crying again. The ambulance arrived and declared the baby dead at the scene, leaving a mum in hysterics and us in shock.

I don’t know what went wrong. We had faith, and we had knowledge, and we had skills. What more was necessary to get that baby to breathe again? Someone had made a decision, but I don’t know why the verdict was handed down as it was. This is an example of where the outcome was devastating. I will never forget it, neither should I.

Now of course this questioning and train of thought is based on a particular set of beliefs that form a foundational perspective. It would be easy enough to disregard such beliefs to find an easier answer involving ‘luck-of-the-draw’ that doesn’t involve an all-powerful Creator. But I have had a lifetime of having God making his presence known. For me, that is an unchangeable constant. Everything else needs to be considered in light of this. Thank God! in one way, and Dammit! in another.

Biological/Personal Cost.
In order for me to get through these last few weeks in hospital, I was given 4 bags of blood and 4 bags of platelets. I guess up to 8 people gave there time and blood products so that I could get back on my feet. Without these people generously giving their own blood products, I would certainly be dead. I felt even more grateful for the platelets as they told me just before they gave me the fourth bag that it took a while to get this one on the drip because there is a national shortage.

Resource Cost
I cannot remember all the machines I have been scanned by or hooked up to over the last year, but they all are important in treating or tracking this cancer. Without them, a lot of my diagnoses and monitoring would be near impossible. I can easily measure my scan films in kilograms now rather than sheets.

Professional Time
A lot of people have studied long and hard to be able to treat people like me. This blows me away. This was made especially apparent during this recent hospital stay as I had about six doctors working on getting me better. Of course I wasn’t their only patient, but they all had a good knowledge of where I was at and did everything they could to make sure I kept living. These folk, along with the nurses, are golden. The time that these people have spent studying is one thing, but then the ongoing toll it takes on their families for callouts, or working back late, or those consultative phone calls at 1am is another.

Financial Cost
In the last 4 weeks, the cost of my treatment has been astronomical. We conservatively estimate the high-dose and stem cell transplant procedure to cost around $150 000 (the allogeneic transplant from matched donor costs $250 000). There is a charge of roughly $500 per night for a bed in hospital, and I was there for the best part of two weeks. One course of drugs that I needed (the injections) cost $2400, and I have had some tablets that cost $30 each. I will be having a PET scan next week. This alone costs over $2000.

Uncomfortable
So basically, the money, time and resources that go into medically giving me as many years as possible, they are all just buying me more time. I have been thinking about this because it does a little to make me remember not to take it all for granted. Thankfully, we are fortunate enough to not pay any significant part of this due to the health care system in this country, but by not having to foot the bill, it becomes too easy to forget about what actually goes into extending a life in the western world. I have to say it makes me pretty uncomfortable also.

Sure I want to live as long as possible, but can you imagine how far this kind of money and these resources would go in a place like Burma, or Halls Creek, to extend and save lives? What criteria did I meet to inherit these lavish gifts that will essentially give me, statistically, another five years? I would suggest the significant criteria would include the freak chance of being born in a place that has the resources to treat someone in my situation. There are so many places I could have been born into where there is no option of receiving bloods, $2400 worth of injections, admission to an emergency department, $30 tablets – the list goes on.

I don’t know how much an extra year of life is worth for an Anglo Saxon educated professional with a mortgage and a goldfish. I know if it concerned my child or my wife, there would be no limit to what I would spend. But how can I justify the cost of extending my life when these kinds of resources could be keeping thousands more alive in countries less fortunate? It is the answer, or my lack of ability to articulate one, that makes me uncomfortable.

My chest x-ray indicated significant clearing of the infection in my lungs, although it may take a while for it all to disappear. The comparison x-ray taken while an inpatient was obviously a lot worse with heavy patches of compromised lung. Good to have it disappearing.

I asked the doctor again today, “Just how sick was I?”
He was standing up when I asked him, about to listen to my chest. He sat down again, looked at me directly and said “Pretty sick.”

I asked him what constitutes being “Pretty sick” and he went into all the reasons. Having pneumonia caused by an infection along the lines of legionnaires when my neutrophils were zeroed out was a dangerous combination. My lungs were full of infection and it was not easy to identify whether the infection was viral, bacterial or fungal, so they had to treat for all three until something changed. The fact that I am relatively young, with health lungs, and yet the infection was widespread throughout both lungs was apparently also a bad sign. It was hit or miss for quite some time.

The thing is, I have felt sicker. At the end of last year I had another chest infection after being discharged from hospital. I was running a temperature over 39C for at least a week and it got to over 41C for a couple of days. I have never felt as rough, and that is my benchmark for if I am feeling sick or not. So this stint in hospital I obviously underestimated how critical the situation was, purely based on the way that I felt. Even now, it seems like I only spent a week on the ward rather than two because I slept through half of it and was seldom alert during my waking hours.

So now, I am experiencing the lethargy that goes with having your marrow knocked out. I walk at half the normal pace, I talk at half the pace, eat half the amount (I’ve lost 10kg in the last 3wks) but it takes me twice as long and I get tired as soon as I wake up. I was told to expect this so I am not surprised, but it is still very debilitating.

I think I will be in this state for the next couple of weeks, but I am pretty much out of the woods as far as infection is concerned. I am officially within the range of what is normal for guarding against infection. Good to be back in the land of the living.

This is on the 17th of April when I received my stem cells back. An important part of the process, you can imagine. The red goop in the bag are my stem cells collected last November. It was good to be reunited. Two days prior to this footage been taken, I had the high-dose chemo, so the destruction of my marrow was already taking place. Using my own stem cells is called an autologous infusion. One of the later forms of treatment may be to use someone else’s matched stem cells, like one of my sister’s for example. This is called an allogeneic transplant.

Almost a week later, I my temperature started to creep up after getting some kind of infection. Our only option was to head to the emergency department. Due to a bed shortage, I spent the first night in isolation in ED.

Hair falling out. Live. Soon after this footage was taken, Elizabeth shaved my head. To cut a long story short, I got cold when we took the towels off that we had put around me to catch the hair. I got rigors, and shook uncontrollably for the next 20-30 minutes. A nice warm bed and some pethidene put an end to that, thank goodness. It took a day for my body to recover – exhausting.

A day in the hospital life.

Always good to be heading home.

Aunty Libs

Angus grabs Uncle’s finger. At over 4 kilos and full of strength, I am not sure who would come out on top in an arm-wrestle between us at the moment.

Other photos of Ma, Pa and Angus can be seen at www.barrandgirl.blogspot.com

Today we were back at the clinic for a blood check and chat with specialist Brad about what comes next. My bloods are doing well. Everything that needs to come up is coming up, and everything that needs to come down, is settling. My time back home has been good in that I have only had one vomiting episode yesterday morning and have been feeling fine generally. My neck/headache has been a concern and last night it almost rendered me immobile, as the pain was so great.

It seems each day is only going to be pretty short as the afternoons are spent sleeping. I have just woken up from a three-hour sleep this afternoon and yesterday was not much different. My body always feels like it needs it. There is never a time when I feel I have overslept. Wonderful. My legs have lost most of their strength. A short walk here or there warrants a big rest (can’t get more specific than that).

We had to talk about two main things today with Brad – what next, and kids. The ‘what next’ aspect affects the ‘kids’ issue and it will take some thinking through. There is a drug called Thalidomide that has been proven beneficial as a consolidation treatment to stem-cell transplant treatment. The plan would be to go onto this drug for 12 months to make this treatment as effective as possible, according to current research. Most of you would know about the negative connotations associated with Thalidomide being the morning sickness drug that caused birth defects some decades ago. It can be a nasty drug, but like I say, it has shown beneficial outcomes for people in my situation.

If we choose this road, we would need to sign a stat-dec saying that we are using at least two forms of contraception. According to the drug company, we cannot take the risk of becoming pregnant while on this drug. So our decision involves whether to have this treatment for 12 months, or to start trying for kids as soon as possible. I know it is a decision that only we can make, but it is another one where faith, facts and feelings play a huge part. We have a couple of weeks to decide.

I will be having a full-body PET scan in a few weeks also to see if anything of concern shows up. Brad was very pleased with my progress, and he has been very sensitive and understanding with our required decisions. People can be heroes for one of many different reasons. He is one of mine for many reasons. When your life is medically in the hands of someone who has dedicated such a big part of their life to making folk like me well, I can’t help but be in awe of their commitment. When they go over and above their call or duty as Brad often does, their input into a life becomes more valuable than words could ever say, something that can never be repaid.

I could say the same for the nursing staff I have had. There is something about being at one’s most vulnerable state and being looked after so well that can bring depth to the word ‘gratitude’.

As of 4pm, sister Rachel is in labour and all is progressing well. We’ll be meeting and celebrating the arrival of our latest family member later tonight.

Libs and I after a bit of a trim.

Nurse Sarah taking out my CVC- a brilliant job.

What the CVC (Central Venous Catheter) looks like.

Where it has been hanging out for the last 3 weeks, quite uncomfortably.

A big thank you to my proxy blog writer, Elizabeth, who did such a wonderful job collating and articulating my thoughts and adventures. I will do my best to remember the details under non-chronological topic headings.

The Infection

I went to hospital initially because my temperature started to go up. It was just under the borderline 38C, but by the time we got to Emergency, it was over 38C and a cough started to brew. The Medic Alert card I was issued did its job perfectly as I was fast-tracked through ED and got onto anti-biotics quick smart. I spent the night in isolation in ED and moved the next day to a single room in general surgery ward. The infection continued to develop.

Eventually, it was established that I had legionnaires disease. This is a big deal on its own, let alone to tackle it with no immune system. They eventually backtracked on this diagnosis and confirmed they have no idea what I had. As the infection was in the same stream of infection as legionella, they treated on what they knew at the time and it worked. That is good.

The Haircut

Usually a hair cut would not make the tabloids. For some, however, it is a big deal to lose one’s hair. For me, it is what happened after that made it memorable. I had been getting shivers with my fever for the first few days, which is nothing unusual. To sway between heat fever and cold shivers is tiring for a body, and I was getting tired.

My hair started to fall out in clumps, so we knew it was time to get out the clippers. Elizabeth did the honours after I covered myself in towels and plastic sheets to collect the hair. When we took the towels and plastic off, however, my body went into rigours and just shook violently for about 20 minutes. I jumped straight into the shower and blasted myself with hot water, only to make my skin go red hot. Then I jumped into bed where I started to warm up. I was given a shot of pethidine that made me feel hot and uncomfortable. It took the next day for my body to recover. My head was now bald. I have had more pleasant haircuts.

The Appetite

The appetite went right down to almost nothing. The hospital food was not bad, but I just did not have the energy or desire to eat.

Daily Activities

My brain was reduced to just functioning really. I couldn’t read, write, watch tv or even bring myself to listen to the radio. The maximum amount of stimulation I could handle was watching the clock tick or the IV drips do their thing. I was connected to the IV for the first week and a half. I must have gone through about 30-40 bags of fluid including anti-biotics, anti-fungals, anti-virals, blood transfusions, hydration, glucose and platelets. Being hooked up to the IV pump was pretty much my only activity. That was enough.

The Headache

I had a cranking headache since being admitted. It would come and go without warning and no painkillers seemed to do anything to stop it. This caused some concern and for that reason I had a head and neck CT scan and X-ray. Both revealed nothing suspicious. The headache is still around, but I think being back in my own bed and without the central line in my neck it will have a chance to get better. The headache was quite an issue when it got so painful that I couldn’t cough. I had to cough to clear my chest and keep my lungs working properly, so pain management became a priority.

The Central Line

The central line was taken out of my neck today and the nurse did a fantastic job. I honestly did not feel anything. I feel like I have been released from a portable prison that stopped me from functioning properly for the last 3 weeks. Some people have these lines in for months. I take my hat off to them.

The Bronchoscopy

In order to establish what kind of infection was rattling in my lungs, I was given a bronchoscopy so that they could analyse some ‘washes’ they did of my lungs. I was sedated so I remember nothing of the procedure. I love a good sedation.

The Staff

The Doctors, Nurses and Hospital Staff were, once again, fantastic. There are always going to be a few people in every profession who lack the confidence, knowledge or skill to be brilliant, but I generally had brilliant health care workers who I am forever thankful for. I cannot say enough about how wonderfully I am being looked after. My specialist is very well respected and rightly so. He is incredibly tactful and has demonstrated wisdom in every step of my treatment. We are reminded every day about how fortunate we are in our health-care system with the level of care that we receive.

The Summary

I vomited only about 3-4 times the whole two weeks. I didn’t have any mouth-sores. I didn’t suffer major digestive tract purges. My fatigue is at a manageable level.

Basically, it may seem that if I didn’t have my chest infection, I may not have known that I was sick. I asked one of the doctors how sick I was. It was all carried in the tone, but he just said, “You were sick”.

Now my levels are creeping back up to being safe. I feel like I escaped a huge amount of suffering and discomfort even though I had a nasty infection on top of high-dose chemo and the transplant. I am very thankful for that. As I write this, the news is reporting the possible tens of thousands killed in Burma and 100’s of thousands displaced due to the disastrous cyclone that has moved through that area. My ordeal sounds like a walk in the park.

So that is it, more or less. My main goal now is to stay out of hospital by taking things easy and avoiding other infections. I am back at the clinic on Thursday for a check-up and a talk with my specialist in regards to what comes next.

Sister Rachel was due to deliver on the 1st of May. The little’un still hasn’t made an appearance yet, but will have to by tomorrow or he will be given his marching orders with an induction on Thursday morning. Exciting week.

After quickly searching wickipedia and Carmel calling the Infection Control Dept we’ve learnt that the disease is not contagious, so family and friends (and “babies in waiting”) who have visited can rest easy.

Cam’s treatment has been further modified to target the infection. Overall, he is feeling a lot better, his temperature remains down and he’s in good spirits. His body’s just tired.

We did end up commencing the new drug to treat Cam’s pneumonia. We got to discuss this at length with our doctor and, having heard the pros and cons, we were happy with this decision. This drug is needed to treat Cam’s pneumonia, now that we know its not a bacterial or viral pneumonia (apologies for the “nursey” talk).

Cam still has a temperature and had a bit of a rough night last night. This should hopefully improve soon. Once his temp has returned to normal over a few days, he will be allowed home.

Cam and I procrastinated all afternoon, delaying shaving his head- but after accepting that there now was enough hair on the hosp floor to knit a sweater, we agreed it was time. Carmel and I turned Cam’s room into a make-shift hairdresser’s, improvising using plastic bin bags as the cape and a shower chair. So expect to see a variety of headwear being modelled when you next see Cam.

Despite the news of pneumonia, his blood counts still being low (Cam has needed multiple blood transfusions over the weekend), his high temperatures and the beginning side effects of the chemo- Cam is feeling a lot better. He is less short of breath and has more energy to sit out of bed and go for short walks on the ward. And he’s singing again, which is always a good sign.

Yesterday Cam’s hair began to fall out. His pillow and jumper were sprinkled with hair and small clumps would come out when he ran his fingers through his hair. This morning there is more hair on the pillow so we’re planning on doing the “big shave” this afternoon. Pictures to follow….

Cam’s blood counts have dropped further so he was given an infusion of platelets yesterday. He was also due to have a blood transfusion but they weren’t able to give it as his temperature was too high. However this morning his temp has dropped for the first time so he should be able to have the transfusion today. Cam has had more samples taken (blood, sputum) for testing. The results of the original samples should be back tomorrow, and then the antibiotics can be adjusted, if needed, to more specifically target the source of infection.

Cam continues to feel quite tired. As he put it yesterday ‘staring at the blank hosp room wall is enough stimulation for his mind at the moment’. Despite this we’ve still organised to have the TV connected, more for my benefit and so I can watch the final of ‘So you think you can dance’ tomorrow (go Jack!). Oh, for the simple things in life…..

Yesterday afternoon Cam and I were advised to go into the Emergency Dept after Cam developed a temperature (called febrile neutropenia). Cam had previously been given a “VIP/medic alert” card in the event that this situation occurred. This card proved invaluable as Cam was triaged, sent straight through and given a bed in an isolation room. We were especially grateful for this as the hosp and ED had been full and one other patient we spoke to had already being waiting 6hrs to be seen. We’re now considering selling this card on ebay when we’re finished with it.

Cam was promptly seen by the ED and haematology doctors and they decided that Cam needed to be admitted to hosp. Cam spent the next 18hrs in ED until a single room became available this afternoon on the ward.

We’re still not sure where the source of the infection is- so Cam has had a lot of tests, and samples taken and in the mean time has been started on three strong, broad-spectrum, IV antibiotics. He’s feeling pretty exhausted, and has been able to sleep well for most of the day. His sleep is now being aided by a fentanyl patch (like morphine) which, in keeping with Cam’s love for prescription medications, he is embracing. His temp today has been up to 39.2C- so he’s been alternating been shivering and sweats.

The length of his hospital stay will depend on where the infection is (it will take about 3 days to get the results of the cultures) and how quickly his immune blood counts increase. We’ve been told to expect anywhere from 3 days-2weeks. Stay tuned…

Thanks again to everyone for your thoughts and prayers- we feel very well supported. We’re seeing this hosp admission as part of what we were told to expect for this treatment- so we don’t feel anxious about it and feel that we are in good hands.

To complicate things, it seems that I have a chest infection. This is of course what we have been trying to avoid approaching this time of no immunity. I was checked out by the doctor this morning and was sent for x-rays, but they didn’t reveal enough at that time. My temperature was okay (37C), but my blood pressure was low and my heartbeat high. I was feeling a bit worse than usual, but manageable, so we came home.

Now, at nearly 3pm, my chest congestion is getting more noticeable and my temperature has gone to 37.6C. We need to check it in an hour, but if it reaches 38C we need to rock up to ED. I am getting this info up while I am waiting for some time to pass in case we head into the hospital soon. I have no doubt I have a chest infection and need antibiotics of some description. Sooner would be better than later I assume as my body is no longer able to fight any infection on its own. I don’t want a repeat of last year when I caught pneumonia after my stint in hospital. I can’t remember a time when I have felt worse.

We’ll see how things go.

One of the great things about leading a transient lifestyle for a time was meeting people who will remain significant part of my life, even though we are separated by thousands of kilometers. It has been over 10 years since I had the privilege of working with an amazing group of people high up in the Blue Ridge Mountains on the border of North and South Carolina, USA.

The setting was at a camp called Camp Greenville, and the people that I met through this place have impacted my life in an immeasurable way.

I was living in London in 1996 and had a ticket booked for the US. I sat the interviews in London and was accepted at Camp Greenville. Out of 5000 or so camps in the US, I got sent to one that was only an hour and a half from where I used to live in Georgia when I was 15. It was like heading home.

I remember when I was 15 that things could have gone either way for me. I would have been happy to stay in the US, and happy to go home. At such a pivotal time in my life, it was like I found a place that I felt very at home in. I could talk both Australian and American. As with most kids who have this sort of experience, from the moment I landed back in Australia I realized I was no longer felt completely at home in my own culture. The affiliation that I had for my second home and its people was strong, and it still is.

Being placed at a camp in the South was perfect. Not only was the location perfect, but I also doubt there is a better run camp in the US than Camp Greenville (I know, bias). A friend sent me a gift this week including pine-scented candles. No matter where I go in this world, for the rest of my life, the smell of pine will always take me back to walking through the pine forest and meeting in the Mulligan Centre that was a wonderful building made of pine. Even when I go past a garden with pine wood chips in it, I smell it and just want to jump in there and snort the stuff.

So I am very thankful for the people who made it such a wonderful place for me and for the support I receive from you all. It is a reality that the worlds that I know will never meet in their entirety, but I feel honored to be a part of an incredible chapter of memory making history in the Blue Ridge Mountains.

Here’s to you, Staff of 1996,1997,1998.
Here’s to you, scent of pine, for helping me get back there as often as I can.

As nice as I like to be in regards to the job the anesthetist did inserting the central line, I conceded today that I could have done a better job and wish I had of taken over mid-procedure. When you have a tube pushed through your neck, you expect there to be a little discomfort. I was experiencing more discomfort than what I though was fair, kind of like the tube was pulling the skin even when my head was still. When I went to the hospital this morning, the nurse took the dressing off and revealed the problem. When the poor lass was stitching the tube to my neck, she had tightly tied the tube to a stitch in the skin a fair way away from the tube itself, resulting in the skin being constantly stretched.

Uncomfortable. The nurse got straight to it, cut the stitches out and immediately relieved a stress that was consuming my entire upper body. So liberating. She fixed it up very nicely and now I am a lot more comfortable.

The rest of the day was given over to resting and recovering. All my bloods seem to be good so I am happy with that. I am beginning to wonder if they gave me the chemo at all.

A real highlight of the day for me was watching the historical footage of the 2020 Summit held in our nation’s capital where people from all over Australia came together to collate some great ideas for the future of Australia. It was like a huge knife slicing into an ‘old-school’ mentality in respect to the way our country does things and caused a real sense of excitement for the future. I just wish I could be there in any capacity, even serving lunch. It was a huge deal that will change the direction of the way we do things in Australia, especially in the are of governance. Kev is getting it right. We may just be seeing one of the most innovative approaches to governance operating in the world today. Not to say it won’t have its hiccups, but I am looking forward to seeing some practices and attitudes dying out and some vibrant reform taking place. It is like Australia is going to go through a high-dose chemo itself and will be ‘rebooted’ with a fresh batch of blood. That’s why it is bloody brilliant.

This week will be getting into a routine. Each day we will begin at the hospital (after a satisfactory sleep-in) for my check-ups of bloods, temperature, blood pressures etc. Depending on what they find, I will be sent home or invited to stay. Each time I go in I am meant to take my teddy and toothbrush so if anything is out of whack I can be admitted straight away. If all is well, it will be back to the comforts of home and doing what we can to not get cabin fever. Happy to say I have got a lot to keep me occupied, so I am quite looking forward to this time. At the moment I feel like I have a scheduled appointment with sickness, but I am on standby.

We were back at the hospital first up this morning as my potassium was a little low last blood test. When we got to the hospital, we were able to check yesterday’s bloods and my potassium was fine, so no infusion needed. They just took more blood and let me go. This still took about one-and-a-half hours. I can’t imagine what we would have done if we were still living 50 minutes away. Especially as I will be making these hospital trips daily for the next two weeks at least, and most of them will be whilst yearning for a bathroom or vomit bowl. It would just be too much.

We popped around to catch up with my sisters on the way home which was great- love living so close. Then it was back home to continue the isolation regime. This involves no shoes in the house, washing hands twice in the designated washroom and then just keeping the distance. I have my own bathroom now (I let Elizabeth use it from time to time). Thankfully, I am a bit of a hand-washing guru anyway so I don’t find this new way of life a significant change.

The biggest threat is sickness carried by others or an infection from myself. I would be really keen to get through this without getting sick or an infection. That is my goal. It is a good one to work toward.

First I was hydrated solidly for about 4 hours via drip. Then a concoction of premeds was loaded into me. I basically just lay down for the whole day solidly. Thankfully I was given some sedatives to take away the restlessness. I did not sleep at all well last night. My body ached with an insatiable yearning to move around and get out of this body with the tubes sticking out of it.

All night I just lay awake thinking of people who have it worse than I. I had these graphic images in my semi-slumber of people who are sick that don’t have access to medical facilities. Images also of people being tortured came to mind. I have tubes hanging out of my body in order to prolong my life, while some people in the world have procedures done on them to reduce their life or make it more painful. It was a very uneasy feeling, but one that made me so grateful I am going through what I am going through for a positive outcome.

Now I am back home, the folks have just left after visiting, and Libs is cooking up some soup. The other major thing that hits us hard is how people go through this process alone. I could not imagine it, but on the occasion I come close, it feels like the loneliest feeling in the world. I can’t imagine being this sick and having to make it without Libs, my folks, sisters & BILs, and friends to get me through. I am certainly one lucky bunny.

1. Driving to the hospital yesterday morning for high-dose chemo.

2. Just before I head down to ‘recovery’ for the central line to be put in. I think they should call it ‘discovery’ because they took an awful long time to find the way to my heart.

3. The tubes are in and I am just about to start the chemo, starting by sucking the ice for a while.

Only the first day, so I can’t complain. But I just feel like I can’t get comfortable. The biggest achievement was to walk through the park with my sisters and Libs. Then I just slept this afternoon. Just had dinner, about to head to bed again. Sleeping has actually been quite relaxing and I slept well last night. Stem cell transplant tomorrow.

Goodnight.

Things went mostly well. I was expecting the central line to be the biggest hurdle of the day, but it turned out bigger than we all expected. The procedure usually takes about 10-15 minutes. They had great difficulty getting through my chest wall and after 4 or 5 attempts, two different Anesthetists and about 40 minutes, they decided it wasn’t going to happen. This whole time I reckon I could have cracked walnuts between my butt cheeks.

I was fine at first but I have a history of needing a high dose of anesthetics or sedatives in order for them to work. When I had my first hip biopsy, they used three times the usual amount because I was still carrying a conversation the whole time. Even then I still remember the whole thing. I fell asleep after I asked to see the sample that had come out. Today was quite similar. They were injecting local anesthetic constantly it seemed, and then it would wear off because it was taking so long, so they would inject more.

After about half and hour, I was just over it. I was exhausted. After the 40 mins, they whipped out the unsuccessful line in the chest and scrubbed down my neck. The senior Anesthetist took over once again and the line went in fairly easily. Apparently I had too much muscle in my chest wall. I know, I didn’t believe them either, but I was just happy that they got it in somewhere. To be honest, one of the most painful parts of the ordeal was the ripping off of the sticky gauze from the partially hairy chest. They should really knock you out for that part. It would only be fair.

So I was away for about three and a half hours all up, and therefore late for the actual chemo dose. This can be bad, because the expiry on the Melphalan is quite quick once it has been prepared. I was hooked up quick smart and the chemo went in 5 minutes before it reached its expiry time.

The chemo itself was an anticlimax. I didn’t realise I was actually hooked up and getting the dose until about 20 minutes into it, and then I didn’t realise it was all over until about 10 minutes the drip had come out. Then it just came down to picking up a vast array of new drugs from the chemist and a cup of ice to suck on the way home.

Only now am I beginning to feel a little tired. I haven’t eaten much all day though, and my body has been through a bit of stress, on top of the chemo itself. Going to rest tonight I think. No more handstands for a while, I am too scared an assortment of body fluids will leak out of one of the three tubes in my neck.

Then headed to the beach. Soothing. This is the last time I will be able to swim for a while as I will have a tube hanging out of my chest for the next month. It was a sensational day, 32 degrees and calm – just perfect. For those of you who love a good metaphor, here is a photo for you:

I am ready for this next phase, physically and mentally. I clipped 100kgs last week (220lbs in the old money), so I think I have done my part to beef up for this chemo. This may be the closest you get to a ‘before’ shot. I haven’t airbrushed it, promise.

Get a load of that! This body has been brought to you by Hungry Jacks/Burger King. (‘Well send it back!’ I hear you say?)

Anyway, The next part of the day was actually spent doing a quick shop in the city for a hat and beanie for when the hair falls out and the head gets a little chilly.

I have been overwhelmed by people’s generosity and support through this whole time, but today more than ever. We are very grateful for the emails, texts, comments on this blog and the gifts. It has been a massive lead up to this day that we head into tomorrow, and we are in great shape thanks to the people who have supported us in all the different ways possible.

We are at the hospital just before 9 tomorrow morning (Tuesday) for our appointment with the team at the Haematology Care Centre. I start off with a visit to recovery (which, if you ask me, is ironic) to have my central line put in. I had a doctor friend explain the procedure to me during the weekend which was significantly helpful.

I then need to suck ice for half an hour before the chemo is administered. There is only one dose of this cocktail and the reason it is injected straight into the heart is because it is the biggest pool of blood where the chemo can be dispersed rapidly. If it is injected straight into a vein in the arm for example, it will do significant damage to the vessel. It will also do damage to the entire digestive tract, where rapidly dividing mucus producing cells will be affected. It is for this reason that I need to suck the ice, causing a lower rate of blood flow to the mouth and therefor lessening the damage done to the mouth lining. Fantastic.

So I don’t at all feel nervous, and to be honest, I feel like I am just carting a fleshy mass around to drop off for a service, it is just that I have to hang around until the service is complete. I have heard a lot of talk about childbirth and various other medical procedures recently. I would much rather be going through my day tomorrow compared to what others have experienced.

For me, although nervousness not an issue, it is certainly a turning point, and one that we approach with both awe and fragility. It is like leaving a place that you have lived in for a very long time, knowing that you will not return for a very long time, if at all. And if you do return, you know it is not going to be the same as you remember it. This kind of turning point is worth approaching with some sense of reverence, as you would mark an occasion with much contemplation, reflection, excitement and sadness. That is where we sit tonight, well, that is where I sit. Libs is feeling the same but is vacuuming around me at the moment, after blitzing the rest of the house to make it as clean as possible before tomorrow. God, she’s good.

If this cup can pass from me, that would be great. Otherwise, bring it on.

On Wednesday we went to an information day on Multiple Myeloma organised by the Leukemia Foundation of Western Australia. A pharmacist spoke first and explained the chemotherapy drugs that are currently used today for MM treatment and then a specialist doctor presented on the topic of the treatment itself. It was quite helpful getting a bit more background. I was definitely the youngest one in the room.

I am feeling my body getting sore again. I don’t know if it is just because I am tired or my body is craving the steroids it was expecting last week. I just need to make it to Tuesday and I can relax, so it seems, for the next phase to start.

This last week or so has been highlighting to me how much I love my family and friends. Being able to spend time with them has been the priority, and I plan to continue this habit.

I am just realizing how difficult I am finding it to think at the moment. This simple post has taken almost an hour to write. I guess I have a lot on my mind.

There was a church Minister in town this last week who is a bit of a guru in the area of healing. A few friends let me know about him and encouraged me to go along so last night I did.

I was kind of reluctant, to be honest. I was reluctant mainly because I have already had prayer for healing and I believe completely that God can heal me, and has heard our prayer for healing. My belief has been that if I really believe that God can heal me, why do I need to keep on going to various people to ‘receive healing’. Does it mean that I lost hope in the last batch of prayer, or that I need to top up the level of hope for healing?

I haven’t lost hope in our prayers to be healed. Medically speaking, there is no cure for Multiple Myeloma. All treatment that I receive from now on has the purpose of prolonging a life expectancy. I do believe that God can heal me totally. I find it difficult to believe that a Creator doesn’t have the capacity to completely restore the created. I mean, as my sister put it, ‘If our faith doesn’t mean anything at a time like this, then it doesn’t mean anything at all.’

Many people got healed last night. Legs got longer, lifelong injuries and sicknesses took leave, people who had not walked properly for a long time were running around, just like you may see on tv from a skeptics perspective. And I believe these healings are true. The healings that Jesus was involved with during his time in flesh were amazing also, and I believe them to be true. If I didn’t believe them to be true then quite frankly I wouldn’t waste my time piss-farting around having my hopes built up, or being involved in building others’ hopes up for the sake of something that could be a farce.

One of the people involved in the healing last night stated that there was someone here that had a sickness of the bone marrow. I stuck my hand up so people knew who and what to pray for. The congregation was also asked who had been diagnosed with a terminal cancer. I put my hand up again. Some dear friends and some strangers also were part of the group that prayed for me. Rachel, Mike and Elizabeth were also with me. They prayed against the cancer.

After the time of prayer, people were asked to check to see if their symptoms had disappeared. I actually have been feeling quite well recently, and there is nothing that I can really ‘check’ like lumps, bumps, etc. So I wasn’t sure if I was healed or not. Even with blood tests, urine tests and scans, this cancer is very difficult to nail both in diagnosis and monitoring.

Here lies the problem.

There is a train of thought that would say in a situation like this, one should put their faith into action by not going through with the medical intervention (in this case, my next round of chemo and stem cell transplant). This is a big call, as you can imagine. I know that some people have taken this approach and things turn out okay. I also know of people who have taken this approach and things turn out very poorly. If a person is willing to make a decision not to go through with medical intervention in order to let their faith do the talking, I do not know what more could be done to demonstrate their belief. But when some folks live and some folks die as a result of the same decision, it leads me to believe that there is something else needing consideration.

I do not believe, at this point in time, that there is a formula to be followed so that healing takes place. I don’t know why some people are healed and others not. I know of some very faithful and prayerful people who did not receive healing. And I don’t know why they didn’t.

The effects of being in a broken world are severe. I believe sickness, along with injury and sadness, are endured by humanity because we are living in this broken world. Biblically, this brokenness is called sin. If sin weren’t so nasty, I wouldn’t be using the word ‘broken’ when the less dramatic term ‘shop soiled’ would do the job.

I accept and admit that I am still learning about how this all fits together. If medical intervention cures me, will God get the credit, or will my Doctors? I think they all should get a round of applause, personally. What medicine has done to sustain me has been miraculous. The way God has sustained me has been miraculous. The passion shown by those who treat me medically demonstrate aspects of God’s character, although it can be difficult to understand at the time a pelvis biopsy is taking place. Maybe God is more interested in who gets the credit for our living day to day than an extension of life or an increase in comfort that results from a healing.

Anyway, this morning I woke up sore and tired. I didn’t feel better than yesterday. I was kind of hoping that I would wake up this morning, jump out of bed doing cart-wheels and whizzing out para-protein-free urine (not at the same time, mind you). So I don’t really know the state of my health at this time, but whatever the outcome, you may be glad to know it hasn’t changed the character of God one iota.

Contemplating a swim.

One not to show my Orthopedic specialist. This is the ‘before’ picture, showing how fabulously fit I am before high-dose. I am pretty sure the ‘after’ picture will show those same robust arms clinging to a toilet bowl.

My wonderful cousin (they all are) Conor and her hubby DJ spoiled us by organising a looking after by Knee Deep winery, just outside of Dunsborough. And look after us they did. Highly recommend the food, wine and service.

I got this candid picture capturing Elizabeth in a natural moment.

Elizabeth got this candid picture capturing me in a natural moment.

I wonder if this was God’s intention when piecing us together, a way of saying, “Don’t say a thing, just weep with those who are weeping.”

I had another incident today in my ongoing habit of making fools of the Australian professional sporting community. At the beginning of the session today at Chemo Gym, there was an announcement made about congratulating one of the volunteers on an achievement they had made in cricket – something to do with being selected for some team. I missed the details but clapped anyway.

We all went off and did our warm-up walk and as we were heading into the gym Smithy (the gym owner) says to this guy, “Shaun, can you work with Cam today”.

I need to let Smithy know not to send elite sportspeople my way, he seems to always send them my way. I am afraid all I do is bruise their ego when I have no idea who they are or what they play. Anyway, I introduced myself and checked his name, “Shaun, is it?”. It turns out this guy is Shaun Marsh, son of Geoff Marsh (I hear he played cricket too. What are the chances!! Two cricketers in one family!). Shaun has just been chosen to play for Australia in the West Indies, or something like that. I had to check out his details on Wikipedia. I was up front with him though, and told him I don’t follow any sport so he was not to get offended if I had no idea who he was. We then just on with the workout and I learned more about cricket as we talked. He probably has gone home depressed and shocked that I had no idea who he was, Praise God.

From now on, it is more important than ever that I remain free of infection or we risk having the high-dose chemo being delayed. I just want to get it started, and finished.

From here on in we are spending time catching up with people. Once high-dose starts, our house becomes an extension to the isolation ward. We are going to do our best to make sure the house is as clean as can be. I will be on a strict diet and anti-infection regime that will keep things quite for a while around here. We will not be able to have many visitors at all. Those who dare approach will be forced to stand out on the deck naked while I hose you down for 10 minutes. This whole procedure may seem a bit over the top, but a man in isolation needs to do what he can for entertainment. And by the way, you will need to wash your hands upon entry for hygiene reasons.

We have been told that it is still highly likely that I will get some kind of infection during the critical stage of the treatment when my immunity is gone. In this case, I have a medic-alert card which kind of serves as a backstage pass but for an emergency department. I will get put through the express check-in equivalent so that they can start fighting the infection as soon as possible. We have been told that, if this happens, I can expect to be in hospital for 2-3 weeks.

There is a stage of recovery that can be reached after about two months but I am hoping to speed the process up as much as possible with the continuation of exercise. We are back at the hospital this Thursday for a meeting with the Specialist Nurse and for my bone density infusion. It seems like just last week that I had my last one.

By popular request, a song for the day given the topic:
You’re Poison, You’re Poison Running Through My Veins (Alice Cooper)

“Hi Cam,

My question is has your illness and treatment affected the possibility or plans of having a family?”

“Hey Sam, it has been a while but I hope you and the girls are going great!
As far as your question goes, the answer is yes and no. It is highly likely that my nurries will cop an absolute pummeling from the chemo and they will become purely decorative, kinda like baubles at Christmas time, but hopefully not hanging in a tree, or packed away for 11 months of the year. 
The slim chance that little cammies are able to be produced may be quashed again as the maintenance drug that I will most likely be on is thalidomide, and you are not allowed to have children while you are on that.
 One of the first things we did though when I was admitted and it looked like I was restaged to myeloma was to have some little cammies put on ice. Once you start treatment you never really know if you are going to get that chance again so we are glad that we got onto that as soon as we could.
 So it may be possible to have family in the future, but help may be required, and I don’t mean candle-lit dinners and soft music. 
I will probably write a full post on this in the future as it is a big issue for us, a lot of decisions to be made. Thanks for asking about it.”

So we have been thinking about all this, and it can be an issue for some, and not an issue for others. For us, the main reason why we have been discussing family as an issue is because of logistics really. I know that sounds cold, but had we been pregnant during this last year, it would have been difficult to cope.

Basically, at times Elizabeth is a full-time carer, and even when I am at my best she is spending a lot of her time doing things I can no longer do. On top of this she has been working. Apparently, being pregnant and having a baby can be hard work also. There are sometimes decisions that need to be made to make a difficult situation less difficult, and this is how it has been for us. Of course there are many people who have coped with this situation, but we are grateful things have turned out the way they have for the moment.

We are getting a better idea now too of my life expectancy, and how it crosses over with treatments that may interfere with having family. It has been helpful to talk through these aspects with the specialist and support groups as we feel more prepared for the possible outcomes.

For now, I am looking forward to honing my skills in the role of being an Uncle. Rachel and Michael are on track for the arrival of baby at the beginning of May, and Carmel and John are expecting their first later in the year. We are going to be surrounded by babies soon enough.

Pain in the bones is frustrating. There is something about not being able to escape from a dull ache from the deepest part of your body. These ‘down’ days have been more severe than I remember the others. It clicked yesterday that it is most likely a result of my bone density infusion (that causes bone pain) a few weeks ago as well as coming off the drugs on Sunday. Not a good combination.

We headed to the gym yesterday but I was about as useless as mammaries on male bovine. I just could not walk properly, couldn’t stand without the desire to faint and had no strength left to give. My legs were also quite sore above the knees. Whenever I feel pain like that, I get a bit anxious, envisaging myself walking along normally when suddenly my bones just snap or crumble.

We went straight from the gym to the hospital for our 3-weekly catch up and results review. My results were once again showing that the treatment is taking effect. My para-proteins are down and stable and my immunity indicators are in range.
We then spent a bit of time talking about the process of stem cell transplanting.

I will be having my central line put in on the 15th of April. The same day I will be given a dose of mephalan that will begin to destroy the myeloma deposits, along with my marrow and immunity. A couple of days after that, I will be receiving my stem cells back. The nasty part of the process kicks in over the next few days, weeks and months for my myeloma-loss, hair-loss, weight-loss, immunity-loss program that I have scheduled.

Our specialist has been very good. It is great to get someone who explains things honestly and sensitively. We discussed what we had been thinking about insofar as how to best plan for our future. This included family, work and management of time.

The best indicator we have is by referring to the 5-year relative life expectancy. There has been roughly a 40% survival rate for males with MM over 5 years, but has recently improved to 50-55%. This is good news, and indeed a lot of the recent research I have been doing into the survival outcomes has been moving quite rapidly in a positive direction. So basically, we can afford to plan for some ‘definites’ within the next two years, and the five-year chunks we will look at as we go.

So we were kind of encouraged by that, as it was not worse than what we expected. Our specialist did put it plainly when he said it is never good when someone this young gets this sick. He said to live normally, do the things we enjoy doing to the best of our ability, and we plan to do so. Yesterday, I struggled to walk around a gym. Today, I was floating in crystal clear water at City Beach. Every day is different.

For now, we rest. Libs has just been through our calendar and we are realising we need to slow down in these next weeks.

There were a few triggers for me I suppose. The service was wonderfully lead by a close friend whom I met when I was 16, at a time I needed great input into my life. I was reminded of the long-standing friendships that I have with people that have been amazing to me throughout my life. Another trigger was the music. Just difficult not to be affected by what was being sung about. Both Libs and I noticed that there were a few people in the congregation who were hurting, for whatever reason. Some left in tears, and we kind of felt we shared where they were at.

We caught up with an old friend during the service, literally during. It was just after communion and while the music was still playing, he came up and flung his arms around me, hugged me, laughed with excitement, held me, looked at me and the sullen look that was on his face turned to visible, yet almost tearful joy.

At any moment now, his son may be taken from him after a long and chronic illness that has become more severe in recent months. His response to me during the service was that amidst his incredible suffering as an onlooking father, he was just so happy to see me upright and looking healthy. It was such an amazing display of joy in the pit of his sadness. I was quite moved.

After this, we were beat. Had to head home and rest.

We have been doing our best to catch up with people as much as we can before highdose. At the moment, we don’t know when I will be back into the swing of things after treatment, so it is just a good time.

Now, I am just recovering from my final chemo cycle before the highdose. The usual has set in- lethargy and cloudy brain. This time I am having more bone pain, mainly in my spine, but we are hoping it is just due to all the sitting up that I have been doing lately rather than anything pathological.

We see the specialist tomorrow to be prepared for the highdose treatment, so it will be a big day I think. In some strange way, I am pretty keen to start this next phase of treatment. The last dose of oral chemo was good to get over. I am tired of it already, after only 3 months. Some are on it for much, much longer.

One of the great things that we are experiencing at the moment is being able to catch up with such great friends and fam from all over the world. It is going to be a tough, but sensational year.

So there is a lot on our minds at the moment.

Thank you also to the well informed and intelligent morning breakfast shows who have gone to great lengths to make sure our intelligence is once again challenged and educated in the important things in life. That story on Britney’s latest antics was also, what can I say, just brilliant! I can’t wait for the YouTube clip of the day! And what’s this I hear about Cheerleaders becoming a thing of the past!! Outrageous!!! What a good friday I am having!

Back on the gear today for my last cycle of chemo before high-dose. This is the first time I have felt the effects come on so quickly. It may be because I took them on a fairly empty stomach, but I am hot, sweaty, tired and losing clarity of mind. Not long to go now.

Someone at Chemogym today was telling me that they were told by an ‘alternative’ health professional that Doctors can cure cancer because it is a simple fungus, but there is money to be made in pharmaceutical treatments so the alternatives are ignored. This could be an extreme end of a belief, but it highlights an important issue. There is a train of thought that ‘mainstream’ Doctors will treat with commercially lucrative pharmaceuticals rather than consider alternative treatments. (I am using the term ‘alternative’ to describe the treatments that may largely exclude mainstream treatments, rather than ‘complementary’ treatments that would include a range of approaches to treatment.)

We talked about this issue for a while. History is full of people who have promised health and well-being with products, treatments or programs. It is a good money making scheme. But I just can’t buy into the notion that ‘mainstream’ treatment largely disregards medical research into these alternative treatments for the sake of making money. If cancer is a simple fungus that can be easily treated, as this lady was told, why the hell do we go through chemo, transplants, maintenance drugs etc.?

If cancer is so easily treated, we must assume that the vast majority of Doctors are screwing us over or misinformed. If I could get rid of my cancer purely by drinking fruit and vegetable juice, for example, I would. And I have no doubt that my Doctor would buy me first round if that were the case. I am sure there would be some people that have extended their days by taking on such treatment approaches, and I have no doubt they are a part of an overall effective treatment plan. But to infer that medical professionals would disregard proven treatments would be pretty offensive, I would assume. If this were the case, we would have to assume that the vast majority of Doctors would find it beneficial to put a patient through treatment hell for the sake of financial gain. I don’t think so.

I have seen no evidence at all that Doctors operate this way. It may happen, but I know the treatment I am receiving is in my best interest. The medical staff that treat me are very pro-complementary therapy, but they have also got time against them as physicians. Last Christmas would have very likely been my last Christmas without radical intervention, that is the simple truth. Not sure if the juicing would have cut it. (Only using juicing as a euphemism for radical alternatives in pure and exclusive form, I actually do the juice thing from time to time, complementary). So I am very keen to continue complementary approaches to treatment as there are many great stories of successful outcomes. But my Doctor is treating me the same way he would treat his own son, I have no doubt.

I would be keen to hear of alternative (ie. excluding mainstream treatment) treatments and complementary treatments that folk have come across. What has been helpful, what has been less than helpful?

It seems a crying shame to have to go through this next stage, because I will lose all that I have gained in fitness, mobility, healthy appearance and clarity of mind. I like it better this way. It is pretty much a countdown now until high-dose. Not one that I am particularly looking forward to really, but at this stage, there is a lot hinging on what happens in April. Catching up with people happens before April 15, isolation happens for a few weeks after, and hopefully some clear results should be presented after some time in recovery.

It is like being born again except I will have to go through the labour myself this time instead of Ma. My sister Rachel is due to give birth about 2 weeks after my high dose starts. I am glad to be going through high-dose rather than passing a sizable human. There will be two bald members in the family then, and hopefully one of those will still be able to toilet himself or at least indicate his needs with more detail than a pre-cry.

Back into the routine today with going to the hospital, peeing in a cup, filling an ever-growing number of vials with blood, then off to the gym and back to work for the afternoon.

Apart from these and a few other reminders, I think there is nothing wrong with me.

The high-dose chemo and stem cell transplant process usually has good results, and there is no real reason to be worried about the process itself, other than it is uncomfortable. But this month we have had to start thinking about planning for the future and how we want to spend our time in a way that is meaningful.

There is actually quite a difference in how we decide to spend our time depending on what timeframe we look at. Two years, 5 years, 10 years and 25 years all have different outcomes of how we would decide to spend this time. Because we don’t know the time frame, it can cause quite a dilemma. In this way, we are really no different to anyone else. None of us know what time we have to play with. Some of you reading this may be gone before I am. It is just that I have been given a head start with an early warning system being tripped. Lucky, huh.

I do know this though, if I have got a really short time, I want to spend it with people. I could sacrifice learning new skills for the sake of hanging out with people- purely and simply. If I have 10 years though, I want to be learning new things and not landing in a pit of atrophy. Of course, I still want to be spending time with people, but there would be attention to purposeful combining the focus. Given 25 years, this outlook would change again.

There is more to write on having a family, but it has been going through our minds quite a lot recently too with contemplating different time frames. The hardest of questions we have had to ponder is do we start a family in such uncertain times. My condition could easily shift within 9 months, so an affirmative decision could be carried out in different circumstances than those during which the decision was made. Ultimately, the best legacy I could put my efforts into would be to raise a child for as long as I could, as best I could. Being a good husband and father would be the foci most worthy of my time. I know that the former is essential, but the latter needs a decision. Obviously faith will play a huge part in this call, and also information about my prognosis. At this stage however, it is unknown. Like I say, much more to write on this. Later.

Vocation is another area needing thought. The shorter the timeframe, the more I want to work with people and develop my skills in making positive change. I love my work at the moment being a Silversmith and an Educator. In the long term, I see the continuation of the silversmith work as important in understanding my heritage. I am now fourth generation in this trade, and it is important to me now to understand what is an important part of my identity. I have silver and gold running through my veins. It would be nice to understand that more, but with gold prices the way they are at the moment, I am happy to stick with the silver.

Education is essential for effective change – essential. So I don’t want to leave this aspect of my vocation. As much as teaching in school has left me disillusioned for the time being, interacting with and educating upcoming generations will always be a wise use of my time. So it is something I will always want to pursue. I have sometimes known the education profession to be detrimental to lifestyle and wellbeing, and if I were to remain in those circumstances it would not be worth my time, nor my students’. In all the other aspects I have utilised education, it would be a great use of my time. When the body can cope with it, and the teaching environment is right, teaching is fantastic. I have been more than privileged to work with the students, teachers and parents that I have been able to work with over the years.

Mixing these two areas of vocation with the other areas I am passionate about requires a great deal of decision making and prioritising. Day to day, I need to decide how to spend the time while balancing this with the need to rest when my body needs it. It can be frustrating. It seems that the most intense time of tension is when my body can’t do much, but my mind is racing with ideas and motivation. The body usually needs to win, for health’s sake. The other aspect of this situation is that if I have limited time, I don’t want to spend it crashing on a couch for a few days. I want to force my body to do something constructive. Anything.

My ‘Bucket List’ (or wish list of things you want to do before ‘kicking the bucket’) is fluid at the moment because I don’t know what timeframe I am working with. Should it matter? I don’t know. Logistically it makes a difference. Philosophically, it may not. Still working through it. I know some of you are reading this and you are at a pointier end to this issue than I. I would be grateful for your thoughts.

I would have thought that by facing such issues as I have been facing, I would have changed my thoughts and behaviours to be as good as I can be, as gracious as I can be, and as angelic as I can be. Not the case. The sad fact is that chemo doesn’t get rid of the moral cancer that inhabits us all. The echoes of being a tainted human are still strong in me. The living a life that honours my wife, family, friends and bystanders is now in more tension than ever as it battles with the desires of what I want to get out of a life that is limited by time. It is like the episode of The Goodies (apologies to my US friends- you can YouTube The Goodies a bit) when they know when the world is going to end and their lives go into chaos. I feel like that in these days sometimes.

Everything considered, it is a fine place to be. If we all had to consider how we spent our time wisely with the consideration that our time may be limited, it can open up an urgency and a refining of ideas that surely beats the hell out of living without a known purpose or at least a real sense that our time here carting these shells of flesh around is finite.

So writing a list of things to do in this lifetime has been on our minds. In saying this, I hope that I can look back in 25 years time with my kids and be thankful that I considered these things in retrospect, knowing that we were dealing with these issues as the issues that were foremost in our minds at this stage of our lives. It could have been worse. I could have been awakened to these issues when I was 89 and the opportunities for deciding how I spent my time would be limited to what board game they let me play at the nursing home or what numbers to choose for Bingo each week. What a painful privilege I have. What a painful privilege we all have.

But alas, now I am here – somewhere between 26 and old, reaching the age of 34 today. There is no doubt that this birthday is happy. Thanks to you all for being a part of my life and this journey.

I got there a bit late so I nudged my way past some new guy in front of me so that I could hear what was going on. The new guy turns around and I see his face. Now although I consider myself quite bereft of any sporting knowledge, I know who Justin Langer is (a cricketer I hear). After excusing myself and exchanging greetings, we got on with the routine.

Did my walk with Embers (sorry, Andrew Embley), then spent the next 20 minutes boxing with Justin Langer. When he could take no more I let him have a break while I was cornered by Dixie Marshall for interviewing.

I am not sure when the story will air but it will be on Channel 9 sometime soon and focuses on the Solaris cancer support group and ChemoClub.

I am way back into it. Rode my bike for the first time in a year on Sunday, and again today. I feel like my strength is pretty darn good. I haven’t thrown my arms around like I did today with boxing for over a year and both JL and I were surprised at how hard I was hitting. I have been cautious of course knowing that my sternum has taken quite a beating over the last year, what being engulfed by cancer, then radiated, then losing whatever density it had through osteoporosis.

I am quite pleased with the improvements I have seen since joining the gym and having treatment. I can actually feel some meat returning to my bones and my energy is pretty good too. This is definitely the best I have been since this time last year.

The rest of the day was spent filming a documentary on trees. I am focusing on the use of trees in urban and suburban developments in regards to creating microclimates and canopies in streetscapes. My goal is to get as much footage now and work on the mini-doc editing while I recover from high-dose (the intention is there). Or I might just prefer to vomit for the two weeks. We’ll see.

I may not have mentioned it before but last weekend a year ago we were camping with some friends down in Collie. It was while I was driving back from this trip that I noticed a lump on my sternum the size of a 20c piece. It has been quite a journey since then.

So now you know my reasons, I will let you know that I have nothing profound or even useful to say on my mind at the moment, but a simple question may stir something. I have writer’s block at the moment, so if you have a question regarding the cancer, treatment, faith/belief issues, bus schedules, relationship advice etc., please feel free to ask. Failing that, we will have to find a way of playing Heads Down, Thumbs Up via a website.

Today I woke up and I was fine, probably feeling the best for months physically speaking. I went to the gym this morning and felt great. I am now using the rowing machine, peck deck, cross-trainer, exercise bike, and doing some pull-downs. Considering only about three weeks ago I couldn’t walk around the oval, it is paying off. The research that is coming out in regards to pre and post-treatment exercise is impressive.

The goal is to get as fit and strong as I can before my high-dose chemo in April and subsequent stem-cell transplant. I know the stronger I can get the more effective recovery can be, so it is a bit of a focus for me at the moment. I was able to break out into a bit of a staggered jog up a hill today for about 10-15 meters. Mentally I am ready for more, but it is going to take my physical being a bit longer.

I am still not really sure how my bones are going. I think I did a bit of damage to a rib during the week in my sleep. It isn’t broken, but it is just painful again. I need to have tests before I can get back into something like running.

It was Zometa day today, which is the monthly infusion that I have to maintain bone density. The process itself is fine, only taking about 30-45 mins all up and a simple drip in the arm. It is a process that will now be a monthly routine for the rest of my life, or at least until they find a way to make my bones turn to steel.

The rest of the day was spent catching up with a friend who Elizabeth used to work with and with whom I went through radiotherapy with. I will talk more about her in the future as she deals with issues far more pressing than mine. In many respects, I have it good.

And it is back to work tomorrow. An education project I am working on has been moving forward over the week and some silver orders need to be churned out. I am working on some mini-documentaries also, getting as much footage as I can before high-dose so that I can edit them down while in recovery mode. It is good to have hobbies.

Incidentally, one thing I am constantly reminded of is how fortunate I have been to teach some amazing students. It is a strange feeling when the little people of yesteryear who used to fill a classroom or community hall have become such a real support. My ex-students have been amazing with such support over this time. They have obviously forgotten about being kept in for detention.

Housekeeping: it has come to my attention that some may not be aware you can change the background to this site. I am not sure what background comes up for most, but if you need a change of scenery you can click on the squares under the title “The Walk Beside”. Everybody needs a change every now and then.

Today is recovery. I am getting used to the patterns now after this third dose of chemo. I felt fine while on the 4-day regime, but now that I am off, my body is letting me know that the novelty of doing drugs is wearing thin. Chemogym this morning, slept this afternoon. That was the day. I just can’t think straight to delve into anything else.

I largely agree, but it can’t stop there. It doesn’t guarantee health, it shouldn’t be used to cloud reality, and being realistic should not be confused with being negative.

If cancer didn’t result in death or serious impairment so often, we wouldn’t be taking it so seriously. It is nasty. There are many other sicknesses that are nasty too, so once again, this is not about isolating cancer. I think cancer is often regarded as a high-profile illness when there are many other sicknesses that cause people suffering without the attention and the research funding that is needed. So this issue applies to more than being sick with cancer, or being sick in general.

People that I talk to are quick to pick up on Lib’s and my conveyed positive attitude considering the circumstances. We are positive, but there is a reality that we deal with from day to day that parallels that positivity. In my opinion, it is naive to confuse this dealing with reality with becoming ‘negative’ or losing hope.

We are signing off on our wills this week. Elizabeth filled out the warranty for the dishwasher under her name when usually it would be under mine. Having kids is now an issue as the expectation is that I will be sterile after high-dose chemo (yes, we have stored ‘little Cams’ away for such an outcome, millions in fact). We grieve the loss of mobility, the loss of opportunity, the loss the probability of a long and healthy life. My hair may never have the chance to go grey. It is highly likely I will never hear someone call me Grandpa. I may never get to take advantage of Senior discounts at the movies. This is the reality. My admission of such issues and our dealing with them has bugger-all to do with our positivity.

There are a heck of a lot people who have died who were positive to the very end. They stuck to their guns. Who could tell the ones they left behind that maybe they weren’t positive enough? Remaining positive is important, but I believe it can’t stand on its own.

A positive attitude does an amazing amount in the health and well-being of the sick and the well. I have no doubt about this. But I also believe there is an extreme version of positivity that is nothing more than blatant denial of the seriousness of someone’s predicament. Sickness sucks, as does death, but this is the predicament we have as humans.

After thousands of years of the same thing happening over and over, it would seem that we are still not getting use to this idea. “You’ll be ok!”, “You will get through this, I know you will!”, “I have complete faith that you will be healed”. Have we not learned that these often self-appeasing comments are still echoing in mortuaries, coffins, graves, tombs and pyramids all over the place (though I think most of the echoes in pyramids are in Egyptian), not to mention how they ring in the ears of family and friends left behind.

Sometimes, things aren’t ok. There is nothing wrong with coming to terms with this fact and being wise in our preparation to accept reality. It would be immature, I believe, to think that by dealing with and accepting possible outcomes would jeopardise a positive outlook on our situation. I am not going to die sooner because I accept the fact I need to update my Will or deal with the prospect of unfavorable outcomes. That is where I am at, now.

The important factor for me, therefore, is hope. I know enough about the risks, I know enough about the success stories, and I know enough about the grim aspects of my condition. I know enough to understand the reality of the situation. So I live positively knowing that I have a real hope that things can be better than expected, that miracles are possible, and that I have a superb medical team and support network doing their best to make me old. That makes me ecstatic. Why wouldn’t I be positive? By accepting the reality of the situation every day, I know it is helping us in our grieving in the present, and will help us in the grieving we may face in the future.

A word of caution also that has been on my mind for quite some time. Attaching God and spirituality to such clichés and responses (or verses taken out of context) in such circumstances is seldom helpful. You may know the ones I am on about. “God will work it out” or “You are a Christian, everything will be fine”. I wonder if when God hears this he sighs in disbelief and says “Bollocks! Are they thinking about what they are saying at all? Have they not taken note of what has been going on for the last few thousand years or so? Do you not realise how this kind of language and babbling isolates people? How about you stick with my promises for a while before you go adding my name to feel-good-happy-clappy clichés?” I feel that when people over-spiritualise situations to put a positive spin on them, or justify situations using Gods name, there is a real danger that we can completely miss the point and pull the rug out from under some significant revelations. Worth thinking about.

God, if you are still reading this blog, I would be keen you get your take on this. Hope I didn’t steal your thunder.

We are going to fight this sickness to the death, no doubt. We have great hope that I will get a Senior Citizens Card. This hope exists in the light of the reality of our predicament. I have a faith in a Creator who is merciful and powerful- this doesn’t guarantee I am going to get better. Dealing with the realities of the present and future possibilities doesn’t mean I am going to die sooner. Denying reality is going to remove the opportunity to learn about life and depth of character (both human and divine).

It is time for this thinking to grow up. For God’s sake and for ours, let the reality of situations, the reality of human nature, the reality of the world’s predicament allow us to get a grasp on what is actually going on. Then we may grieve honestly when it’s right to grieve, celebrate when it is right to celebrate, question when we don’t understand and spend some time processing what it means to be positive and hopeful in the light of acknowledging reality.

On other things
ps. Ironic that my debut into the papers is in the football sporting pages. Today’s West Australian, no less, pg 73, no less. It can only get better.
What irks me is that the front page is given over to a bunch of students who got the day off due to teacher strikes. I have been taking a whack-load more days off than them, and I get page 73. Oh, the injustice!

So they were just waiting for another football player to rock up and before I know it I have my arms around a guy in a football jumper (no, of course I don’t know his name), looking at him in adoration as he rides one of the exercise bikes (a very natural pose of course- to be riding an exercise bike while two cancer patients have their arms around your neck). Should be in The West Australian newspaper this week sometime.

So I am just letting people know that it is actually me in the photo. The fact that I am in a gym hugging a football player shouldn’t throw you. This is the new me. Well, this is the ‘me’ that readers of the West Australian newspaper will see anyway. I can imagine that I will be stopped in the street for years to come as people say “Hey, aren’t you that football fanatic who works out really hard in gyms?” Yep, that’s me.

The downside is that I will have to purchase copies of The West Australian this week. I have been boycotting this ‘publication’ as much as I can recently as it continues to insult my intelligence and the intelligence of many others older than 9.

I had a meeting with the specialist today and all is well. Treatment seems to be going well and I start my 3rd cycle of chemo on Thursday. My energy levels are up and I feel kind of mobile most of the time. I’ve got a headache on my mind at the moment which can take its toll, but other than that, I feel good.

When I was still at Uni, my Dad wisely organised a friend of his to set up life insurance for me. At the time I thought it was a bit of a hassle having payments coming out of my student wage, but alas, it was sorted. Libs and I reviewed the policy and set hers up when we were married. Thankfully, we chose a policy option that has proved helpful for us with trauma cover.

On filling out the necessary paperwork when I was diagnosed, the trauma cover was payed out with no complications. This subject may not be high on your agenda, but I make mention of it because it has been incredibly helpful to us during this time, and I am really thankful that Dad got me onto it when he did. It has just relieved us of any potential financial stress that we could do without at this time. So this is just our experience. Do with it what you will.

The other issue is more specific to Australia with our Public versus Private Health care system. For those not familiar to Australia’s health system, your health care is free and medications are subsidised generally through the public system. You can opt to be treated privately and pay for it or be covered by a private health insurer. There are lots of perks that come with private cover, such as shorter waiting lists and sometimes ‘nicer’ facilities.

Before I knew how sick I was, Elizabeth was organising her health insurance so we both opted to get full private hospital cover. This, by the way, happened 2 days before I was diagnosed when all I knew was that my chest was sore. Timing. So we started off private, and all the medical staff were excellent, as was the treatment. Due to a set of circumstances, I was admitted publically via Emergency when I had my hip/pelvis fractures. So many tests were run that we decided to stay with public.

I make mention of this because I was talking with a person recently who underwent chemo and radio therapies privately and paid the gap (kind of like an excess). I don’t know the full details of the treatment, so I can’t comment on the exact reasons why the cost was so high, but she mentioned she was paying $1000 a week in gap fees, totalling (so far) $40000. In my experience and opinion, I have been exceptionally happy with the treatment and professionalism I have experienced while being treated publically, as I was privately, but that sort of bill we can do without.

Now of course, everyone’s experiences and circumstances are different, and I do not present this information to make the private option seem unjustified. As it stands, we pay a nominal fee for our consults and this money goes straight into cancer research. Even now, after almost a year of treatment, we haven’t claimed anything from private health cover. The only major expense has been any imaging that we have had done to avoid the long waiting lists that accompany the public health option at the moment.

As I say, this is just our experience, please take it as such or feel free to comment with your own experiences. The understanding is that it may differ between what the sicknesses or injury is, hospitals, departments, doctors, nurses, states and countries. Whatever the case, this topic is all way above the bottom line. The bottom line is that we are so thankful that we have any access at all to health care of any description.

So I am meeting a lot of people now and being able to hear their stories as we pump some serious iron. You get to hear of different treatments, different outcomes, different approaches and different attitudes. I guess everyone there is taking a pro-active approach to their situation as they are going to a gym to do all they can to get better and stay healthy.

Getting back to my affiliation with fitness and football, on Tuesday this week I went over to one of the volunteers to introduce myself. I am never sure who is sick and who is well unless they are looking really sick. This guy looked like he was in shape and he seemed to cope ok with the warm-up walk, so I correctly assumed that he was one of the volunteers. “Hi Andrew, I’m Cam”. He asked me a few questions about how long I had been coming. I asked him what his background was. ‘I play for the West Coast Eagles’.

For those of you who don’t live in Australia or have the same intimate knowledge of sporting legends as I do, Andrew Embley is, so I am told, one of the better known football players in the AFL. My questioning him on his background may have been quite a shock to him, so I am glad I held myself back from saying “Who are they?” after he told me which team he played for. He volunteers there each Tuesday on his day off. Football player or not, he is outstanding in my books. I’m yet to find out if he thinks the same of me after our conversation.

So today’s session at the gym was a real workout. I walked about 900 meters, lifted a broomstick, spent some time on a rowing machine, and did 2 minutes on a cross-trainer before slumping in a heap on an exercise bike for a 5-minute burn around, or part the way around, a virtual Tour de France. The 2-minute stretch on a cross-trainer indicated to me that I have got plenty of room for improvement. My chicken legs were screaming for mercy after 20 seconds.

You can see here the obvious areas needing improvement. It is amazing though how much tone has returned since doing the reps with the broomstick. And yes, I did find a convenient place to keep my sweat towel. And my drink bottle. And maybe a medicine ball.

Did another session at Chemo Gym today. In one hour, I did a warm up walk of about 200 meters, used the exercise bike for 10 minutes, lifted a broomstick (yes, a broomstick) like it was a barbell, watched my muscles ripple in the mirror (this took up most of the time) and did a warm down walk of about 400 meters. My legs are pretty sore now though. I am not sure if it is because the broomstick was made of a heavy hardwood, or if it is because I haven’t walked that far since last April. I am in fine form.

Now I am just about falling asleep. Going to rest before the foreman gets back from his lunch break.

We hung a mirror the other day – a simple task of fixing two screws into a wall. It took over an hour and in the end I just couldn’t finish it. Thankfully, Dad rocked up right on time and saved the day, again. I knew the dishwasher was going to take some time. So I decided to take the whole morning to do it. Everything was slow. Sawing a piece of wood, holding a drill, driving in a screw, throwing a hammer across a room – they all took a lot more effort than they ever have.

On Monday we are going to put down a deck out the front. When I say ‘we’, I mean I will be watching Dad put down a deck. I am glad I can be there for him in his retirement. I would hate to think that he had no jobs to do to keep him busy.

The other frustrating thing is my reduced ability to think coherently. I am not quite sure what to put it down to physiologically, but my mind seems to be constantly clouded, reactions are slow and peripheral awareness is limited. I haven’t taken any serious drugs since the middle of last week, so I feel like I should be back into some kind of normality. Maybe it is the absence of the steroids or my body in recovery from the first few days of the cycle. Not sure.

Sister Rach and BIL Michael arrive in Perth tomorrow to live. Michael got offered a position in Perth out of the blue at the end of last year. They decided it was a good time to spend some time in the West, so they are making the big move! They found a house in the area to rent. It is smack-bang in between Carms’n’John (Sis&BIL) and us, so about 250meters away. How good is that?!

So bring on the year I say. I don’t think we could be more ready for it.

Those who know me well understand the affiliation that I have with football clubs and working out in gyms. I just don’t give a flying rip for either. And given that today is a down day, having trouble walking and being tired in general, you can imagine my shock when I found myself standing in Claremont Football Club this morning with my sweat towel and training shoes on.

Chemo Gym. Not for the faint hearted. I am sure people were standing in awe as they watched my repetitions, curling my arms to the tune of 1000g (a kilo in the old money). The sad fact is that this is the activity that I worked up to. I spent a good 5 minutes on the exercise bike initially on level 3 to get my blood racing before attempting any intensive weight routine.

The most humbling of exercises I completed today was on the multi-purpose machine (I think they call it something else). There are very few things that say ‘you are unfit’ more than completing 20 repetitions on a piece of gym equipment while the weights are actually disengaged. I was there. I have set a new baseline in my fitness benchmarks.

The people that run this gym are sensational. They are all volunteers who assess how your body is going and provide a program that will keep you fit and build you up to get you though chemo. There were about 20-30 people there all at different levels of fitness, I apparently stretched the outlier factor as soon as I walked in the room. I think I was the only person that was there that went to the post office after the workout to pick up walking apparatus.

The sticks, by the way, are fine. But they did come with a compass and snow shoe attachments. Bonus.

I am looking forward to getting some walking sticks today. We went to the Independent Living centre at the hospital the other week to get measured up for a stick but they were all too small. The ones that were big enough were very serious sticks for very serious walking difficulties. My difficulties are not that bad. I just need a bit of extra support when walking on some days and to help me rest if I need to stand.

So I ventured onto Ebay. Picked up – not one, but three (as you do)- walking sticks for $20 in an assortment of colours. Adjustable, telescopically collapsible, lightweight, interchangeable feet, shock-absorbing, foldable handpiece… don’t even get me started on the incorporated LED flashlight. Oh yeah baby. I am going to be one accessorised limper.

It is important to know that I did hold myself back. I could have gone the option where you get 6 walking sticks for $29. Now that would be just silly. As it is, I know that working out how to use 3 in a day will be a challenge. I also did not go the options of the magnetic compass, MP3 player or snow-feet.

So my face is pressed up against the window, waiting for the postman to bring me my package. It is not the age that I was expecting to get so excited by a new set of walking sticks, but I am going to make the most of it before building up to the pimped up electric walking frame in my twilight years. You know there will be no holding back then.

Hardly a day is going by when I would not have an emotional response to something I hear or see. It has been difficult to watch programs on real-life medical stories, any movie with a hint of sadness, or hearing about people in any unfavourable situation. It is not just the sad aspects of life that elicit a response. The other night I almost started crying when someone just blew everyone away with their performance audition on ‘So You Think You Can Dance’! I am waiting to see what happens next time I watch ‘Deal Or No Deal’ to see if I need to book a personality assessment.

Could it be the chemical imbalance in my body at the moment? Is it a permanent deepening of emotional understanding that is going to make me cry at the drop of a hat for the rest of my life? The reality is that it is a bit of both. I know my understanding and emotional disposition has changed permanently, and the changing will continue to take place for a while yet. There are still some big steps to get through.

The hardest thing for me to control is the responses that I have to the responses that others have to what I am going through. Having something affect me directly is so much easier to master control over than seeing or hearing others who going through this all with us, processing what we are experiencing. Not that it is meant to be easy, but it works me up when other people are affected by my circumstance.

So now I find myself walking through the hospital looking at people who I know are going through a tougher time at the moment. I just want to talk with them. We walked out of our consultation the other day really happy, but straight past a family who had obviously received some sad news. There are cues all around me that can set me off, not always noticeable to others, but enough to let me know that my heart is wearing a pathway to my throat.

There have been times recently I have gone quiet in conversation and pretended to forget what I was going to say next. The reality is that it is taking all my physical energy to control my eyes watering or to stop a whimper escaping mid-sentence. So you can treat this as a bit of a disclaimer, a warning if you like.

Of course, it could just be the medication messing with me.

Yesterday, I couldn’t escape the discomfort that I felt in my body. The heat in Perth has been horrendous- the hottest summer in 17 years apparently. I felt the full weight of it yesterday. My body thinks that it is hot (temperature) most of the time due to amyloidosis. It was damn hot yesterday, and just suffocating. I haven’t got an air-con in the shop yet so there was nowhere to cool down. The only thing that I craved was to be drenched in water. I couldn’t get the image out of my head just how amazing it would be to be washed down with cool water and be refreshed.

Elizabeth picked me up mid-afternoon and we went home. I jumped straight into the shower and sat down, letting the cold water soak me. We chilled the house right down to the point where Elizabeth needed extra clothing. I sat under the airconditioner with my feet in ice-water. We went out with family for dinner just around the corner but headed home a bit earlier as I was still feeling quite hot and sore.

I was finally beginning to cool down again by about midnight last night, and there was a cool breeze moving in. For the last few days also I have had to appease the god of purging digestive tracts with frequent offerings. Last night was therefore like a spiritual revival that left me feeling tired and dehydrated.

At about four o’clock this morning, the heavens opened with the largest drops of cool rain. There was no hesitation nor question when I found myself standing in our backyard in my underwear as the rain drenched over me and the cool wind blew over me. It couldn’t have been more perfect. I know other people like rain, but the drops that fell on me, were for me.

We were due at the hospital at 8:30 this morning to get my monthly infusion to increase my bone density. The smile didn’t leave my face as we drove through the rain, walked through puddles, got wet trying to share an umbrella and planned routes to take that kept us close to purging sanctuaries in case there was an unexpected call to prayer.

It is also Chinese New Year today, so all morning there have been crackers going off in the street as different businesses around our house are being blessed. There is a group of dancers, dragons, drummers etc that go around performing the ceremony. Great fun to watch, but great to hear from the couch too.

Today it is raining all day. I have the doors wide open and the cool breeze is blowing through the house. I start my first day of my second cycle of chemo so I am expecting to be laying low today and tomorrow. We forgot to pick up my anti-nausea drugs this morning from the hospital so Elizabeth went back to pick them up and I will start my lunch today with some poison.

If being left with an image of a 33-year old standing half-naked in the rain disturbs you, please feel free to replace it with the image that is strongest for me today. It is the scene of Elizabeth and I walking through the hospital car park, sharing a token umbrella and a hot chocolate, walking slowly through pouring rain and puddles and laughing with each other for no particular reason. She is so good to me.

Today I finished my first 21-day cycle (of four) for this course of chemo. My bloods revealed that my Kappa light chains have come back down to 18 which is brilliant. It essentially means that the chemo is doing a good job and that treatment is going very well. I had no nastiness to report on really, as I have been feeling quite chuffed with how things are going. I get tired when I walk, my feet are hot at night (peripheral neuropathy due to amyloidosis), my ribs have pretty much melded themselves back together, I have been off all pain medication since Sunday and Elizabeth made a fantastic curry last night. Things couldn’t be better.

We also spent some time talking with the specialist nurse at the Haematology Care Centre who took time to explain my high-dose therapy procedure coming up in mid-April. That is when I need to take it a little easier. I will be having a central line put into my heart from my jugular or just under my collar bone. This tube will allow the high-dose chemo to be injected directly into a large pool of blood without doing too much damage to my tissue. The line will stay in for about 2 weeks so they can take daily blood samples and inject whatever they need into me without having to tap a new vein every time.

I will go in for daily checkups at the care centre where they can check my temperature and sample my blood. Any sign of febrile neutropenia (indicates infection) and I will be admitted to the ward to continue the treatment. It is quite common to get an infection during this time, but the thinking is that if they can keep me as an outpatient as long as possible, I will be more comfortable at home. I bring in my PJ’s each time I have a check up so that I can go straight into isolation if need be. Very slick operation!

The high-dose chemo will essentially get rid of my bone marrow. Not natural they tell me. The goal will be to remove the lesions at the same time as the marrow. Thankfully, they see fit to return the stem cells that were harvested from me at the end of last year back into my blood stream two days after my ‘marrow cleansing diet’. I will be back on the same injections into my belly that I was on to increase stem cell production during this time also.

This whole process will take about two weeks and to expect to be the most tired soul I have ever been. My hair will fall out, my digestive tract will be damaged, my energy will disappear and my bones will ache. I should be honky doory though by the beginning of May to become an Uncle for the first time. Not many people have the privilege of having a bone marrow transplant whilst becoming an Uncle, although I am not sure if there are many specific studies on this exact phenomenon.

I will then spend the next two months in convalescence, basically recovering. It will be a slow process of getting my fitness back and colour back in my cheeks. In preparation, I will be starting ‘chemo gym’ next week. There is a gym locally that opens up a few times a week with volunteers that work with chemo patients to assess them and give them a training program to work with while they go through chemo and to prepare for chemo. Sounds fantastic. The more I can do to get into shape now before heading into nasty days, the better I will be in recovery. Once again, very well looked after. I get free massages, and so does Elizabeth because she is a carer. I cannot say enough about how well I feel we are cared for in all respects.

My specialist today told me that he won’t spend too much time with me today because he needs to tend to some sick people. Fine with me. We left pretty darn happy. My new cycle starts Thursday. This time I am only taking tablets for the first 4 days of the 21 cycle. No need for the 4-days-on, 4-days-off Dexmethasone. I just take it all in the first four days with the other cytoblastics and take the rest of the cycle off. Things are looking good.

For others, similar treatment is a focus, there is no choice, and I am sure my time will come. I do not want to make it seem that I think such therapy is easy as there are so many different types of chemo and so many ways that different people respond to it. For me though, at this time, I feel like I am getting through it with minimal disruption to the rest of our lives.

I have been finding it really rewarding to be doing other projects while I have been having treatment. I have been working on a variety of projects involving educational web development, silver jewellery design, an online urban/community development forum, a local newspaper production, documentary making and trying to motivate myself to do some languages and music learning/recording. Now I do realise that there are a lot of things to do to get these all going and maintained, but this year is a good year to get them going.

I think the opportunity that I have in the moment of being sick, but not too debilitated, has given me a greater fire in my belly to get things done. They are the same passions that I have had for years. It is just that now, that some other options are limited, I know what projects I can realistically accomplish and I am very excited by them. I am surrounded by people also that are very supportive and passionate about the same kind of ideas, and I am loving working with them.

Also, aside from being sick, I am seeing this year as being a big year because of what I can see happening in the lives of my family and friends. It is an exciting time of deepening of relationships, having babies, moving houses, starting new jobs, starting new projects, chewing over faith issues, settling down, stirring up, enjoying stability, being shaken up. It begs the question why do we need TV soaps, celebrity gossip, reality tv etc. to stimulate this part of our brain (sorry, did I just say stimulate ?) when there should be more than enough in our own lives and the lives of those around us to engage us in life.

Talking about engaging in life, I hope you have been having many pleasant Gregorian Chanting experiences over this week. I personally got banned within the first few days of the dedicated week, but I didn’t want to dampen anyone else’s excitement/enjoyment during this time.

Today is to be a quiet day though. Libs has spent a bit of time sorting out details with the fraud branch of the bank and the local police. I only really woke up at about 11 after getting to sleep at about 4 this morning. Sometimes I have to remind myself that my body is sick because I feel like I am going ok. When I don’t sleep, or if I wake up sore and sweaty, or if I can’t settle down, I need to take a minute to think ‘Oh that’s right, I am on chemotherapy’.

Even in conversation with people yesterday it seemed strange to talk about chemo while I seem mobile and looking ok. I would have expected at this stage to be looking sick, pale, no hair, vomiting everywhere I go, and people wouldn’t need to have it explained. It seems quite odd to have a conversation with someone explaining that I am undergoing chemotherapy at the moment and that I am just going to pop out to get some terriaki chicken and some keys cut.

Over these next few months, we need to be letting people know that my immunity is down also. We have been told to be cautious with kids, colds and crowds. Basically I can’t afford to get sick from now on. It is just helpful for us if we let people know that this is the situation for a while because we don’t usually ask people if they or their kids have colds before they come for a visit. We are still trying to operate on a sensible caution mentality, so I haven’t got to the stage where I am wearing bubble suits or cooking my food in disinfectant.

When Elizabeth got up, her attempts to find her handbag proved fruitless. My man-bag was also missing. There were no signs of forced entry but we are sure that we locked the door as we talked specifically about it last night before going to bed. It is a bit of a mystery how they got in.

Regardless of their method, they took both our bags only. Along with these were Lib’s cashcards, visa card, license and, most distressing, her haircut loyalty card which was ready to give her a half price cut next visit. Life can be cruel.
We proceeded to cancel all our cards only to find out that in the few hours they were in possession of our visa card, they had racked up a $1500 bill on hardware vouchers, liquor, newsagent items and petrol.

It could have been a lot worse. The police were around very promptly, forensics closely followed and our cards have all been looked after and re-issued. A very smooth process, and we don’t really feel like we are traumatised at all. It is just a freak event that is a bummer.

The police have got a good trail of where the money was spent so there is a good chance that the folk will be caught. We have changed our locks so we feel safer. A friend stayed last night and he decided to move his computer from the doorway where it was just before we all went to bed, and my wallet was not actually in my bag last night either. So like I say, could have been significantly worse. They didn’t come through the house and we were all safe.

If you are reading this and it was actually you that burgled our house last night, could you please put the haircut loyalty card in an envelope and tuck it under our door. I promise we will not take the incident any further or ask any questions.

‘On the 26th of January the convict transports moved into their new home as a handful of Aborigines on the shore set up a horrid howl and indicated by angry gestures with sticks and stones that the white man was not wanted. That night, the British flag was unfurled at Sydney Cove, shots were fired, and toasts were drunk’ (p.17).

‘Within a few weeks convicts has stolen food so shamelessly that Phillip decided to have them flogged as a warning to both European and Aborigine of his determination to defend property. When floggings failed to deter, Phillip agreed to use the last sanction of the law and launched one of the thieves into eternity. The white man had come to Australia’ (p.18).

By the 26th of January, 1808, the founding of the colony was traditionally celebrated by the troops in drunken carousals (p.36).

(Mannng Clark, 2006, Revised 4th Edition. A short history of Australia. Penguin: Australia)

Happy Australia Day everyone. A sensational day where we can celebrate our heritage and conveniently forget some details that can make us uncomfortable. Not to take away from the great things that we can celebrate, but I believe there is more to remember than the cooking of lamb on a barbeque or the watching fireworks will represent.

Tonight, and from this moment forward, I am finding it necessary to sing most of my sentences in Gregorian Chant. I am sure Elizabeth loves this idea as much as I do, although she did seem to get very tired quite quickly and has just headed off to bed. I am thinking it is only logical, given the soothing melodic qualities of my nasal soundwave projections.

I therefore nominate this coming week as ‘Sing-everything-in-Gregorian-Chant-week’. We could raise money for charity by collecting sponsorship when people want to have a serious conversation with participants, minus the chanting.

Please let me know if you are able to give testimonies about the lives you touch over the coming week through this ministry.

Here is an example if you need guidance. Extreme freestyle Gregorian Chanting is perfectly acceptable. Once you watch the first 30 seconds, you may get the idea. Don’t watch the whole 3 minutes waiting for something amazing to happen. That is just it. The beauty lies in the nature of it just going on and on and on, relentlessly. You will thank me if any of you find yourselves in solitary confinement.

We have shopped around between private and public care, depending on what resources are available at the time. The majority of my treatment so far has been public. We have only used private to get earlier scans as an outpatient. So generally, my file is on the pile with everyone else’s.

I received a call yesterday from Katie at the Leukemia Foundation of Western Australia. She called me to tell me it should be OK for me to go to the Police concert in a couple of weeks. Apparently I am not the only cancer patient in Australia, but most days I feel like I am. Where else in the world do you have someone liaise with your specialist carers about my drug schedule and my immunity count predictions for the beginning of February in order to find out if I can personally make it to a concert?

I have had the privilege of dealing with Fremantle Hospital, The Mount, St John of God, Hollywood, and a lot with Sir Charles Gardiner Hospital, all in Perth. The departments have included Haematolgy, Radio/Oncology, Orthopedics, Physiotherapy, Day Surgery and Emergency. Every step of the way I have been looked after superbly. It is not going to happen all the time I know, but the ratio is certainly in the favour of the everyday patient it would seem.

I could have been anywhere in the world at this stage of my life, and indeed we were planning to not be here at this time. But I have to say that if you are feeling a sniffle coming on, or if you have coughed up your pancreas for the third time this week, Perth is a pretty good place to be.

The last three days though have been a bit testing. Good to get into these things gradually however. I am doing four days on, four days off steroids and the days off are difficult. No energy, no strength to sit up, etc. The painkillers make my brain smokey and the nausea began to rear its head yesterday.

I am actually getting through quite well. I would have expected a lot more nausea and violent vomiting by this stage but, alas, the anti-nausea drugs are doing a great job. From what I gather, things have come a long way in terms of making people feel comfortable during their treatment. Drugs to get you through the discomfort are quite effective and pain management is seen as significant in the healing process. I am glad I got sick now, because I would be crying like a baby if this had of happened 30 odd years ago.

I get back on the gear tomorrow as far as steroids are concerned so I am looking forward to feeling a bit better once they kick in. I cracked my back on Sunday while buttering toast. I think I must have gone a bit heavy on the butter when lifting and I forgot to do my usual stretching exercises that we all should do before buttering toast. At first I thought I had cracked my spine in half which would make perfect sense given the lesions in my T-11 and my hypochondriac heritage. But I think now it is just a facet joint that is out of whack.

Nurse Elizabeth has just informed me that I have lost a day in my steroid timetable and I am not back on them until Thursday! Time to get creative with the liquid paper and drug schedule.

Which makes me wonder how I got through the Thai massages I was having at the end of last year. Before I knew my bone density was bad, I was having massages that would involve people walking on my legs, rolling me backward over their knees, contorting me in ways I had only seen on Ripleys Believe It Or Not. Somehow I got through without having to be scraped off the floor and carried home in a wheelbarrow.

The other effects of chemo haven’t seemed to kick in yet at day four. I haven’t felt nauseous, haven’t lost my hair, haven’t had any other complications apart from brain fog (so I have been told). Just the ribs. If God wanted to create any more women the same way he did last time, I have a few ribs floating around in me that I would happily get rid of at this stage. My genetic characteristics may leave a lot to be desired, although my legs would look more at home on a woman’s body than mine.

This is the first batch of chemicals I took on day one. We had just come back from the hospital and I had already taken a few counter-active pills before hand.

“In Australia, 9000 people will be diagnosed with leukemia, lymphoma and myeloma. Sadly, half will die.”

And I thought I kinda liked stats.

Cyclophosphamide 200mg
Idarubacin 20mg
Dexamethasone 40mg
Allopurinol 300mg
Kytril 2mg
Maxalon (as required)

The first two drugs listed are the cyto-toxic drugs and I only take that for the first few days of each cycle. The Dexamethasone is a steroid, and the others are to counter-act nausea or gout. A cycle goes for 21 days and I will have 4 of these cycles over the next 3 months.

I took the day off as I wasn’t sure how I would feel, but I haven’t really felt nauseous yet. So I have felt at a loose end all day. I need to get a hobby.

We had a long session with the specialist as we looked through the X-rays and MRI’s together. The biopsy I had yesterday actually showed no abnormalities in the cells within that patch of pelvis. There is enough evidence though to get things underway.

I will be treated with cyto-toxic drugs together with a regime of steroids, nausea suppressants and other counter-active drugs for 4 cycles. Each cycle is 21 days, so about 3 months all up for this aspect of chemotherapy. Then the fun begins when we go on to the high-dose chemo and stem cell transplant. That is when I will have to be in hospital and remain in isolation for a time. We will find out more about that at a later date.

The specialist said that the stem cell transplant is very effective, and that 40% of people with multiple myleloma having this treatment will survive the next 10 years. The thing to remember here is that most MM patients are quite old and may add to the statistics through dying at a ripe old age. Some people find statistics offensive or in a way promoting a self-fulfilling prophecy of outcome. I personally find stats helpful as it makes me realise the severity of what we are dealing with. Non-favorable stats make a healthy come-back all the more triumphant.

Our time of prayer and anointing yesterday was a real landmark for us. We had a few family and friends gather just at our house and had a family friend lead us through the time. It was a real mix of grief and excitement. I am so thankful for the people that I am surrounded by, both here with me and by the mindful who are with me but geographically distant. I am well blessed. No doubt.

The biopsy this morning went very well. I don’t remember a thing about it although Elizabeth said I was making semi-intelligent conversation throughout. A seem-less transition I am sure.

Elizabeth and I have just flicked through the X-rays and MRI’s and can see the evidence of Myeloma patches throughout the body. It is hard to believe that I am looking at pictures of myself with these foreign bodies inside. The pain helps it to sink in that it is quite real.

I would like to thank everyone for their support through prayer yesterday. We are feeling very peaceful and quite strengthened even though we have had an exhausting stretch. By all rights we should be anxious and shattered, but all is good.

So I am ready for a good night’s sleep and we are ready for the day tomorrow. I am dying to get stuck into some treatment.

This news didn’t phaze us at all really, as they are all fairly small lesions and it doesn’t really change the treatment plan to our knowledge. It explains a bump on my head though. I was running my fingers through my hair the other day as I tried to imagine what a head shape like mine would look like. As I was doing so, I thought, I don’t remember the bump at the top of my head being that big. It may also explain the hair loss I have had in that area.

So all the lesions are pretty small and have not broken through the bones we believe at this stage. This is very good and it has been caught very early for this next stage.

We are going to have a sleep now, as I have just got back from my hip biopsy this morning and want to squeeze the sedative for all it is worth.

If you are able to pray with us at 2pm Western Australia time, wherever you are if time suits, I would really value your prayers. I woke up this morning feeling so much better than last night. I know people have been praying. If praying isn’t your thing, please know that your thoughts, support and encouragement has been, and continues to be, so important for us and we value it more than you will ever know.

We are thankful to you all.

I had told my folks a few days earlier what I was being tested for and they didn’t hesitate in asking people to pray. Ma asked a group to pray at the time of my appointment which was at 4:30 that afternoon. I suppose that I had a few hours to kill so I thought I would get some tools or something, hence the trip to the hardware store.

As I was driving, I can remember the exact patch of road when I felt a sudden change in my neck and my pain was gone. I began throwing my head from side to side, turning it as far around as I could in both directions. Nothing. Considering I was driving whilst doing this, the other drivers may be forgiven for thinking I was having a fit.

It was that noticeable that I looked at the clock and thought ‘I have to ask people what happened at 2:33, because something powerful has just happened’. I continued to the shops, went home and then Elizabeth and I headed to the specialist.

Before we got there my Mum called and asked how the meeting with the specialist went. I said we hadn’t got there yet, as the appointment was at 4:30. “Oh FOUR-thirty, I thought you said two-thirty. I told a group of people that your appointment was at 2:30 and that is when we all praying for you.”

I have had no reason to feel out of His reach.

That is the God I pray to.

I have four new lesions. One on a left rib, one on a right rib, one on my left femur and one on my spine (T9). My light chains (Kappa- indicators for active cancer) have jumped considerably since my last blood test, hence the specialist’s response. The good news is that my sternum is fine.

I got started today on Zometa which is going to stabilise my bone density and hopefully improve it. It seems to be something that I will be on for the rest of my life. It involves a 15 minute IV drip every month. It doesn’t really concern me. The staff at the Haematology Care Centre are fantastic.

I have a MRI tomorrow and a full skeletal survey. Monday I will have a pelvis biopsy and if they are not able to find anything there they will biopsy the spine. They are leaving that as a last resort because of the risk. It seems that I will be starting chemo fairly soon. Looks like I just saved 50 bucks on a hair cut.

Sal, Libs, Michael, Rach and me on Christmas Day

A shot I took of sister Carms and John at Carols By Candle-light

Christmas Lunch with the fam

Our method of communicating the important things in life

New Years reflection and shashlik with Becky, Libs, me, Rochelle and Guennadi.

So the nuclear bone scan today went well. There seem to be patches on my knees, shoulder, collarbone, sternum and ribs. I was asked if I had arthritis, and I just replied ‘most probably’ as that was my diagnosis before we knew about the cancer. The patches may just be showing up joint pain, other than the ribs – we know there is trauma there and it very clear on the bone scan.

One of the things that made me smile today was the ‘one-size-fits-all’ hospital pants I had to wear. It was like wearing a calico drawstring bag. They were way too small so the bottoms were halfway up my legs and the string only just reached itself for me to tie up. This left a gaping window in my ‘groinal’ (new word) region, not unlike a cuckoo clock on the hour. So I walk gingerly from the changeroom through the waiting room strategically carrying a basket in front of me cheerfully returning the smiles I got from other patients. It’s one of those things that bring us all together.

So I don’t have enough information yet about what we are working with and there are a few more tests before we know what is going on. For now, I am more than happy just rocking back and forth on a rocking chair while the painkillers do their thing.
Rock on.

I will go in first thing to have a radioactive isotope injected into my arm that spreads through my blood stream. While this is happening I will be scanned in what reminds me of a big sandwich toaster. A big plate above me and a big plate below. This initial scan only takes about 30 mins for the whole process.

I am then able to go home to take it easy and drink lots of water. This will help the isotope settle into my skeleton and gather in high concentration in the hot spots. So I will head back to the hospital at about 11:00 for a scan that will take about an hour. I have to pee before I leave, then have a shower so there is no trace of radioactive substance near my (insert whistling noise here), otherwise they will be getting worried about nothing. The radioactive isotope eventually leaves the body through urine.
This scan will show up my rib fractures, the zapped cancer in my sternum and anything else that needs to be looked at. It will give a good indication of what to check out with the MRI. I am back at the specialist on Thursday morning.

For the next few days I am not to pee on anyone’s lemon tree, or sign my name on green grass, or use urinals unless they have a ‘microwave safe’ stamp on the back. I kind of feel like I will have a secret weapon with radioactive urine. Like one of those super-hero stories where a simple experiment with nuclear substance goes horribly wrong and I will end up with super powers that if harnessed for good I could fight for justice. I just don’t think that a super-hero with radioactive urine would cut it with the other super-heros. I mean, what good is it if in that crucial heroic moment I get stage fright, or my zipper gets stuck. And it is not as glorious as being able to fly or leap from building to building. Hanging out with Iceman could be embarrassing and getting too close to The Human Torch would have inevitable and obvious consequences.

Come to think of it, if anything does go wrong and I end up with super-powers, I will just keep it to myself.

So my symptoms are clicking ribs (possibly fractures), decreased mobility, lethargy, peripheral neuropathy (in this case, sensation of feet feeling hot, but really they are normal temp), aching muscles, hair rapidly falling out in the last week and sleep deprivation. The rib pain has been the most debilitating. I have been confined to the house really since yesterday morning until I went to the hospital today.

My bone density results I had a month or so showed that I have osteoporosis. I am in the lowest 26th percentile of people my age for bone density. It doesn’t really explain my pelvis fractures and usually this would occur in the lower 5th percentile. It may explain my rib fractures. So I will be put on a drug after another scan this week. It is usually given to people once a year but I will be having it every three months.

I will be re-staged next week. This will involve a full body MRI and another biopsy. I had bloods done today. I am also now on stronger painkillers. I think they have kicked in now so I am feeling very nice thank you. Things are moving pretty rapidly now so we are pretty happy with the way things are going.

Talk more when the pink elephants get out of my living room.

So the pain this time started about 2 weeks ago on one side, and in the last week it has started on the other side. It is frustrating enough not being able to sleep on one side, but now it is back or front only, with a painful transition between the two.

I have been taking an array of painkillers, sedatives and anti-inflammatories, with little to no effect. I thought I found a miracle cure to my predicament in the combination of all three with a splash or two of chilled white. Desperate times.
So I sympathise with all you chronic insomniacs out there. I have had but a glimpse of your frustration. On the upside, you get all the good deals on early morning info-mercials. You can never have too many steam mops or vacuum cleaners that can pick up bowling balls (Thanks to the Cyclonic Suckmaster 2000, I no longer have bowling balls caught in the fine fibres of my carpet).

I would like to extend my welcome to Asher to the world (well, chilly London at least), born on the 2nd of January, 2008, first son to Muz & Katie. It is a rude shock for any fetus having to deal with the transition from a balmy 36.5 degrees (not to mention the humidity) to a near freezing 2 degrees. Don’t be worried, but be aware that it may take a little longer for certain things to ‘drop’ in this weather. Heat pack should do it. Anyway, enough about me, just know that we are celebrating with you and look forward to seeing all three of you soon.

It is almost time for my second attempt to sleep, and I will have to try sans chardonnay or I will be up all night.

I was down the beach today trying to swim among the waves. The waves were a little bigger than they have been over the last week that we have been going down. In the space of a few days, the shoreline had been eroded away, as if the rough water had taken its toll on the usually smooth approach to the water.

I walked in. The ocean floor was unpredictably undulating. I could be walking on level sand one minute, then my foot would disappear into a dip, taking me out of my depth. No warning. No apologies.

When a wave came toward me there was a decision to be made. I could either jump up to make it over the crest, or dip below the wave to avoid the wash-over. I looked around and the other people in the water were all doing different things. Some were dipping, some were jumping. I saw them on the other side though, usually. There is no-one that tells you to dip or jump. You need to make a decision on the spot. Sometimes it is all too obvious what you need to do. When the wave is huge, you have to dip under. It is then that you are at the mercy of that particular wave.

I have been dumped before, on many occasions. The feeling that I have when I am being rolled is quite surreal. It is fear mixed with tranquility. I resign my body over to the wave. I know I can do little to change its mind about what it is going to do with me, how many times I tumble, how long it will be before it lets me breath. It is in this resignation that I feel quite peaceful. The fear comes in not knowing the outcome and how much it is going to hurt in the meantime.

Then I saw a father and his child among the waves. The father was holding his child by the hand and they were wading through the waves, not too deep for the child to handle, but dangerous without the father’s grip. The father would pull his child over the waves when he thought necessary, and sometimes let the water rush over the child to experience the nature of the wave.
Occasionally, I would head back to the shore and lay on my towel for a break. Libs and I just read, or reflected on the year. Once on the towel, I would let the sun dry me out and get me ready for the next swim.

This experience has been very similar to how our year has gone. A major difference I noticed was not having the sand in my crack after cancer treatment.

Today I met up with one of the jewelers working next door to me. This Christmas he will wake up to the deafening absence of his wife’s breathing, having lost her to cancer last month. As you would expect, you could sense a facet of pain that lets no part of his body escape. His eyes hid nothing.

In many ways, these two guys have shared a very similar journey. But I can’t help feeling that at this point in time, they couldn’t be further apart. For the guy at the music shop, there is time that separates where he is at compared to that of the jeweler. And that time, that space between – it is everything.

This is the ‘prelude to a harvest’. I am injecting a growth hormone that increases the production of stem cells and forces them into the bloodstream in a higher concentration. One of the side effects is bone pain, similar to growing pains. It felt like something was sqeezing my spine from the inside in a throbbing motion whenever I stood up or sat down. This footage contains sub-cutaneous needle use.

The Stem Cell Harvester. The blood comes out of one arm, goes into the centrifuge to be spun around. From what I understand, the red blood cells go into the bottom level, the plasma comes to the top, and the stem cells are located in the layer in between. This process is able to get about 1mL of the good juice per minute. Like liquid gold, but less pretty to look at.