More on family

Posted on March 29th, 2008 by Cam.
Categories: Let's talk.

Obviously the implications of family have been on our mind since diagnosis last year, but more so now as we approach a significant part of the treatment. Sam, a friend from the hills, asked about this a few weeks ago when I opened up the question line.

“Hi Cam,

My question is has your illness and treatment affected the possibility or plans of having a family?”

“Hey Sam, it has been a while but I hope you and the girls are going great!
As far as your question goes, the answer is yes and no. It is highly likely that my nurries will cop an absolute pummeling from the chemo and they will become purely decorative, kinda like baubles at Christmas time, but hopefully not hanging in a tree, or packed away for 11 months of the year. 
The slim chance that little cammies are able to be produced may be quashed again as the maintenance drug that I will most likely be on is thalidomide, and you are not allowed to have children while you are on that.
 One of the first things we did though when I was admitted and it looked like I was restaged to myeloma was to have some little cammies put on ice. Once you start treatment you never really know if you are going to get that chance again so we are glad that we got onto that as soon as we could.
 So it may be possible to have family in the future, but help may be required, and I don’t mean candle-lit dinners and soft music. 
I will probably write a full post on this in the future as it is a big issue for us, a lot of decisions to be made. Thanks for asking about it.”

So we have been thinking about all this, and it can be an issue for some, and not an issue for others. For us, the main reason why we have been discussing family as an issue is because of logistics really. I know that sounds cold, but had we been pregnant during this last year, it would have been difficult to cope.

Basically, at times Elizabeth is a full-time carer, and even when I am at my best she is spending a lot of her time doing things I can no longer do. On top of this she has been working. Apparently, being pregnant and having a baby can be hard work also. There are sometimes decisions that need to be made to make a difficult situation less difficult, and this is how it has been for us. Of course there are many people who have coped with this situation, but we are grateful things have turned out the way they have for the moment.

We are getting a better idea now too of my life expectancy, and how it crosses over with treatments that may interfere with having family. It has been helpful to talk through these aspects with the specialist and support groups as we feel more prepared for the possible outcomes.

For now, I am looking forward to honing my skills in the role of being an Uncle. Rachel and Michael are on track for the arrival of baby at the beginning of May, and Carmel and John are expecting their first later in the year. We are going to be surrounded by babies soon enough.


The family thing

Posted on March 27th, 2008 by Cam.
Categories: Let's talk.

We are fortunate to know quite a few people with kiddies at the moment. Today I had the opportunity to spend some time with a dear friend and her two daughters, ages two-and-a-half and almost one, down at the park. I came away feeling very inspired about family and having kids. I am looking forward to being a dad, looking forward to going to the park and playing on the whizzy-diz, looking forward to making little pack lunches. It is a good concept, this whole family thing. I think it is really going to take off.


Every day is different

Posted on March 26th, 2008 by Cam.
Categories: Let's talk.

I have been coming off chemo again so I started to feel a bit tired by Monday morning. I keep forgetting how quickly a body can start to shut down when trying to pull out of a bender. I went for a ride around Hyde Park but that was enough to take it out of me.

Pain in the bones is frustrating. There is something about not being able to escape from a dull ache from the deepest part of your body. These ‘down’ days have been more severe than I remember the others. It clicked yesterday that it is most likely a result of my bone density infusion (that causes bone pain) a few weeks ago as well as coming off the drugs on Sunday. Not a good combination.

We headed to the gym yesterday but I was about as useless as mammaries on male bovine. I just could not walk properly, couldn’t stand without the desire to faint and had no strength left to give. My legs were also quite sore above the knees. Whenever I feel pain like that, I get a bit anxious, envisaging myself walking along normally when suddenly my bones just snap or crumble.

We went straight from the gym to the hospital for our 3-weekly catch up and results review. My results were once again showing that the treatment is taking effect. My para-proteins are down and stable and my immunity indicators are in range.
We then spent a bit of time talking about the process of stem cell transplanting.

I will be having my central line put in on the 15th of April. The same day I will be given a dose of mephalan that will begin to destroy the myeloma deposits, along with my marrow and immunity. A couple of days after that, I will be receiving my stem cells back. The nasty part of the process kicks in over the next few days, weeks and months for my myeloma-loss, hair-loss, weight-loss, immunity-loss program that I have scheduled.

Our specialist has been very good. It is great to get someone who explains things honestly and sensitively. We discussed what we had been thinking about insofar as how to best plan for our future. This included family, work and management of time.

The best indicator we have is by referring to the 5-year relative life expectancy. There has been roughly a 40% survival rate for males with MM over 5 years, but has recently improved to 50-55%. This is good news, and indeed a lot of the recent research I have been doing into the survival outcomes has been moving quite rapidly in a positive direction. So basically, we can afford to plan for some ‘definites’ within the next two years, and the five-year chunks we will look at as we go.

So we were kind of encouraged by that, as it was not worse than what we expected. Our specialist did put it plainly when he said it is never good when someone this young gets this sick. He said to live normally, do the things we enjoy doing to the best of our ability, and we plan to do so. Yesterday, I struggled to walk around a gym. Today, I was floating in crystal clear water at City Beach. Every day is different.

For now, we rest. Libs has just been through our calendar and we are realising we need to slow down in these next weeks.


What’s been on our minds.

Posted on March 24th, 2008 by Cam.
Categories: Let's talk.

The Easter break has been good. We went to a service yesterday and both Libs and I found it quite emotional, for many reasons. Amongst the celebrations of Christ’s resurrection, we also faced a few things that come up during reflecting on the weeks gone past.

There were a few triggers for me I suppose. The service was wonderfully lead by a close friend whom I met when I was 16, at a time I needed great input into my life. I was reminded of the long-standing friendships that I have with people that have been amazing to me throughout my life. Another trigger was the music. Just difficult not to be affected by what was being sung about. Both Libs and I noticed that there were a few people in the congregation who were hurting, for whatever reason. Some left in tears, and we kind of felt we shared where they were at.

We caught up with an old friend during the service, literally during. It was just after communion and while the music was still playing, he came up and flung his arms around me, hugged me, laughed with excitement, held me, looked at me and the sullen look that was on his face turned to visible, yet almost tearful joy.

At any moment now, his son may be taken from him after a long and chronic illness that has become more severe in recent months. His response to me during the service was that amidst his incredible suffering as an onlooking father, he was just so happy to see me upright and looking healthy. It was such an amazing display of joy in the pit of his sadness. I was quite moved.

After this, we were beat. Had to head home and rest.

We have been doing our best to catch up with people as much as we can before highdose. At the moment, we don’t know when I will be back into the swing of things after treatment, so it is just a good time.

Now, I am just recovering from my final chemo cycle before the highdose. The usual has set in- lethargy and cloudy brain. This time I am having more bone pain, mainly in my spine, but we are hoping it is just due to all the sitting up that I have been doing lately rather than anything pathological.

We see the specialist tomorrow to be prepared for the highdose treatment, so it will be a big day I think. In some strange way, I am pretty keen to start this next phase of treatment. The last dose of oral chemo was good to get over. I am tired of it already, after only 3 months. Some are on it for much, much longer.

One of the great things that we are experiencing at the moment is being able to catch up with such great friends and fam from all over the world. It is going to be a tough, but sensational year.

So there is a lot on our minds at the moment.


Happy Easter!

Posted on March 21st, 2008 by Cam.
Categories: Let's talk.

Good wishes to you all as we take time out to reflect on the goodness of the ancient, Eostra the goddess of fertility, and her friend the Hare. May you receive all the blessings contained in the huge variety of chocolate easter eggs available at your local supermarket. And we cannot forget the input that seafood has had at this special time, so we again stop to reflect on the origins of our swimming produce and the fishmonger locations in our area.

Thank you also to the well informed and intelligent morning breakfast shows who have gone to great lengths to make sure our intelligence is once again challenged and educated in the important things in life. That story on Britney’s latest antics was also, what can I say, just brilliant! I can’t wait for the YouTube clip of the day! And what’s this I hear about Cheerleaders becoming a thing of the past!! Outrageous!!! What a good friday I am having!


News Flash

Posted on March 20th, 2008 by Cam.
Categories: Let's talk.

For those that are in the West, I think the news report on Chemogym is on tonight (Thurs), Channel 9 at 6pm. That is what my agent tells me anyway.

Back on the gear today for my last cycle of chemo before high-dose. This is the first time I have felt the effects come on so quickly. It may be because I took them on a fairly empty stomach, but I am hot, sweaty, tired and losing clarity of mind. Not long to go now.

Someone at Chemogym today was telling me that they were told by an ‘alternative’ health professional that Doctors can cure cancer because it is a simple fungus, but there is money to be made in pharmaceutical treatments so the alternatives are ignored. This could be an extreme end of a belief, but it highlights an important issue. There is a train of thought that ‘mainstream’ Doctors will treat with commercially lucrative pharmaceuticals rather than consider alternative treatments. (I am using the term ‘alternative’ to describe the treatments that may largely exclude mainstream treatments, rather than ‘complementary’ treatments that would include a range of approaches to treatment.)

We talked about this issue for a while. History is full of people who have promised health and well-being with products, treatments or programs. It is a good money making scheme. But I just can’t buy into the notion that ‘mainstream’ treatment largely disregards medical research into these alternative treatments for the sake of making money. If cancer is a simple fungus that can be easily treated, as this lady was told, why the hell do we go through chemo, transplants, maintenance drugs etc.?

If cancer is so easily treated, we must assume that the vast majority of Doctors are screwing us over or misinformed. If I could get rid of my cancer purely by drinking fruit and vegetable juice, for example, I would. And I have no doubt that my Doctor would buy me first round if that were the case. I am sure there would be some people that have extended their days by taking on such treatment approaches, and I have no doubt they are a part of an overall effective treatment plan. But to infer that medical professionals would disregard proven treatments would be pretty offensive, I would assume. If this were the case, we would have to assume that the vast majority of Doctors would find it beneficial to put a patient through treatment hell for the sake of financial gain. I don’t think so.

I have seen no evidence at all that Doctors operate this way. It may happen, but I know the treatment I am receiving is in my best interest. The medical staff that treat me are very pro-complementary therapy, but they have also got time against them as physicians. Last Christmas would have very likely been my last Christmas without radical intervention, that is the simple truth. Not sure if the juicing would have cut it. (Only using juicing as a euphemism for radical alternatives in pure and exclusive form, I actually do the juice thing from time to time, complementary). So I am very keen to continue complementary approaches to treatment as there are many great stories of successful outcomes. But my Doctor is treating me the same way he would treat his own son, I have no doubt.

I would be keen to hear of alternative (ie. excluding mainstream treatment) treatments and complementary treatments that folk have come across. What has been helpful, what has been less than helpful?


Nothing wrong with me.

Posted on March 18th, 2008 by Cam.
Categories: Let's talk.

I don’t feel or look sick. I look kind of healthy actually. I have quite a bit of weight around me, my colour is good, my muscles are coming back and my mind is ticking over quite nicely. There are a few occasional reminders that all is not 100%, but generally I feel like I am getting back on my feet.

It seems a crying shame to have to go through this next stage, because I will lose all that I have gained in fitness, mobility, healthy appearance and clarity of mind. I like it better this way. It is pretty much a countdown now until high-dose. Not one that I am particularly looking forward to really, but at this stage, there is a lot hinging on what happens in April. Catching up with people happens before April 15, isolation happens for a few weeks after, and hopefully some clear results should be presented after some time in recovery.

It is like being born again except I will have to go through the labour myself this time instead of Ma. My sister Rachel is due to give birth about 2 weeks after my high dose starts. I am glad to be going through high-dose rather than passing a sizable human. There will be two bald members in the family then, and hopefully one of those will still be able to toilet himself or at least indicate his needs with more detail than a pre-cry.

Back into the routine today with going to the hospital, peeing in a cup, filling an ever-growing number of vials with blood, then off to the gym and back to work for the afternoon.

Apart from these and a few other reminders, I think there is nothing wrong with me.


The time of my life

Posted on March 15th, 2008 by Cam.
Categories: Let's talk.

I have been trying to work out how to have the time of my life. It has been on our minds lately. This is partly fuelled by preparing for high-dose in a month’s time, and watching Bucket List the other day.

The high-dose chemo and stem cell transplant process usually has good results, and there is no real reason to be worried about the process itself, other than it is uncomfortable. But this month we have had to start thinking about planning for the future and how we want to spend our time in a way that is meaningful.

There is actually quite a difference in how we decide to spend our time depending on what timeframe we look at. Two years, 5 years, 10 years and 25 years all have different outcomes of how we would decide to spend this time. Because we don’t know the time frame, it can cause quite a dilemma. In this way, we are really no different to anyone else. None of us know what time we have to play with. Some of you reading this may be gone before I am. It is just that I have been given a head start with an early warning system being tripped. Lucky, huh.

I do know this though, if I have got a really short time, I want to spend it with people. I could sacrifice learning new skills for the sake of hanging out with people- purely and simply. If I have 10 years though, I want to be learning new things and not landing in a pit of atrophy. Of course, I still want to be spending time with people, but there would be attention to purposeful combining the focus. Given 25 years, this outlook would change again.

There is more to write on having a family, but it has been going through our minds quite a lot recently too with contemplating different time frames. The hardest of questions we have had to ponder is do we start a family in such uncertain times. My condition could easily shift within 9 months, so an affirmative decision could be carried out in different circumstances than those during which the decision was made. Ultimately, the best legacy I could put my efforts into would be to raise a child for as long as I could, as best I could. Being a good husband and father would be the foci most worthy of my time. I know that the former is essential, but the latter needs a decision. Obviously faith will play a huge part in this call, and also information about my prognosis. At this stage however, it is unknown. Like I say, much more to write on this. Later.

Vocation is another area needing thought. The shorter the timeframe, the more I want to work with people and develop my skills in making positive change. I love my work at the moment being a Silversmith and an Educator. In the long term, I see the continuation of the silversmith work as important in understanding my heritage. I am now fourth generation in this trade, and it is important to me now to understand what is an important part of my identity. I have silver and gold running through my veins. It would be nice to understand that more, but with gold prices the way they are at the moment, I am happy to stick with the silver.

Education is essential for effective change – essential. So I don’t want to leave this aspect of my vocation. As much as teaching in school has left me disillusioned for the time being, interacting with and educating upcoming generations will always be a wise use of my time. So it is something I will always want to pursue. I have sometimes known the education profession to be detrimental to lifestyle and wellbeing, and if I were to remain in those circumstances it would not be worth my time, nor my students’. In all the other aspects I have utilised education, it would be a great use of my time. When the body can cope with it, and the teaching environment is right, teaching is fantastic. I have been more than privileged to work with the students, teachers and parents that I have been able to work with over the years.

Mixing these two areas of vocation with the other areas I am passionate about requires a great deal of decision making and prioritising. Day to day, I need to decide how to spend the time while balancing this with the need to rest when my body needs it. It can be frustrating. It seems that the most intense time of tension is when my body can’t do much, but my mind is racing with ideas and motivation. The body usually needs to win, for health’s sake. The other aspect of this situation is that if I have limited time, I don’t want to spend it crashing on a couch for a few days. I want to force my body to do something constructive. Anything.

My ‘Bucket List’ (or wish list of things you want to do before ‘kicking the bucket’) is fluid at the moment because I don’t know what timeframe I am working with. Should it matter? I don’t know. Logistically it makes a difference. Philosophically, it may not. Still working through it. I know some of you are reading this and you are at a pointier end to this issue than I. I would be grateful for your thoughts.

I would have thought that by facing such issues as I have been facing, I would have changed my thoughts and behaviours to be as good as I can be, as gracious as I can be, and as angelic as I can be. Not the case. The sad fact is that chemo doesn’t get rid of the moral cancer that inhabits us all. The echoes of being a tainted human are still strong in me. The living a life that honours my wife, family, friends and bystanders is now in more tension than ever as it battles with the desires of what I want to get out of a life that is limited by time. It is like the episode of The Goodies (apologies to my US friends- you can YouTube The Goodies a bit) when they know when the world is going to end and their lives go into chaos. I feel like that in these days sometimes.

Everything considered, it is a fine place to be. If we all had to consider how we spent our time wisely with the consideration that our time may be limited, it can open up an urgency and a refining of ideas that surely beats the hell out of living without a known purpose or at least a real sense that our time here carting these shells of flesh around is finite.

So writing a list of things to do in this lifetime has been on our minds. In saying this, I hope that I can look back in 25 years time with my kids and be thankful that I considered these things in retrospect, knowing that we were dealing with these issues as the issues that were foremost in our minds at this stage of our lives. It could have been worse. I could have been awakened to these issues when I was 89 and the opportunities for deciding how I spent my time would be limited to what board game they let me play at the nursing home or what numbers to choose for Bingo each week. What a painful privilege I have. What a painful privilege we all have.



Posted on March 14th, 2008 by Cam.
Categories: Let's talk.

When you are young you may have imagined what it would be like to be an adult. I really only projected to the age of 26 because it would be the year 2000 and then imagined what I would be like when I was an old man. I didn’t really spend a great deal of time thinking about where I would be anywhere in between. I certainly did not imagine I would be here.

But alas, now I am here – somewhere between 26 and old, reaching the age of 34 today. There is no doubt that this birthday is happy. Thanks to you all for being a part of my life and this journey.


My new normal day

Posted on March 11th, 2008 by Cam.
Categories: Let's talk.

So the next installment of my new sporting profile goes like this. I rocked up to chemo gym this morning knowing that Channel 9 were going to be filming and interviewing some of us.

I got there a bit late so I nudged my way past some new guy in front of me so that I could hear what was going on. The new guy turns around and I see his face. Now although I consider myself quite bereft of any sporting knowledge, I know who Justin Langer is (a cricketer I hear). After excusing myself and exchanging greetings, we got on with the routine.

Did my walk with Embers (sorry, Andrew Embley), then spent the next 20 minutes boxing with Justin Langer. When he could take no more I let him have a break while I was cornered by Dixie Marshall for interviewing.

I am not sure when the story will air but it will be on Channel 9 sometime soon and focuses on the Solaris cancer support group and ChemoClub.

I am way back into it. Rode my bike for the first time in a year on Sunday, and again today. I feel like my strength is pretty darn good. I haven’t thrown my arms around like I did today with boxing for over a year and both JL and I were surprised at how hard I was hitting. I have been cautious of course knowing that my sternum has taken quite a beating over the last year, what being engulfed by cancer, then radiated, then losing whatever density it had through osteoporosis.

I am quite pleased with the improvements I have seen since joining the gym and having treatment. I can actually feel some meat returning to my bones and my energy is pretty good too. This is definitely the best I have been since this time last year.

The rest of the day was spent filming a documentary on trees. I am focusing on the use of trees in urban and suburban developments in regards to creating microclimates and canopies in streetscapes. My goal is to get as much footage now and work on the mini-doc editing while I recover from high-dose (the intention is there). Or I might just prefer to vomit for the two weeks. We’ll see.

I may not have mentioned it before but last weekend a year ago we were camping with some friends down in Collie. It was while I was driving back from this trip that I noticed a lump on my sternum the size of a 20c piece. It has been quite a journey since then.


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