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 h