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Thursday, March 28, 2013

Let's get practical 2

Original silhouette [now modified]

"Speed, which is an advantage when found in a horse, by itself has no advantages."

   So goes a wise old saying from a Sufi master a thousand years ago.

   It's all a matter of context. If there's a tiger racing towards you with dinner in mind, and you get into the car quickly enough, speed definitely has its advantages. If you're in that car on the highway, and an approaching driver has a concentration lapse at the wheel, it's far better to have an impact speed of 2 kph than 200.

   Speed is no advantage there.

   So it is with time. I was reading an article where a man had spent 25 years in solitary confinement in an American prison, an amazing story from a number of points of view, and for whom time seemed no friend at all. Time is relative.

   I also read the article that prefaced this segment. I'll have more to say on that, and a number of other critical things, shortly.

   What it's all about is quality of life within the scope of what's possible and legal in Australia, and in some way will probably have its own implications for you when the time comes.

   For a person in my circumstances, length of lifetime has become very much less important than its quality.

   Let's take the case of a man who died recently from the effects of a glioblastoma multiforme (GBM4), the same form of brain tumour that I have. Without going into some details you'd prefer not to read about but which we know intimately, he chose length of life over quality. 

   People are different. They live on different values, different hopes.

   He spent the last year of his life with very poor to no quality of life, in a coma-like state most of the time but with no capacity to communicate with family and no evidence that he even recognised them. That year was the most miserable and stressful of his wife's and family's lives, and, if he had awareness at all, probably his own, with zero chance of a surprise happy ending.

   GBMs don't have happy endings, unless we revise our definition of happiness.

   Some medical conditions have, or are on their way to, happy outcomes. Take the case of Mark Colvin, who contracted a rare and crippling illness on assignment in Africa and for many years has been fighting on to stay alive, using dialysis in hopes of a kidney transplant. You'd never know listening to him on radio that his life was constantly under threat, and how medical crises over that time brought him very close to death.

   He waited many years with declining hopes for a kidney transplant, but he fought on.

   Last week, it happened. An organ donation resulted in the transplant that he desperately needed. I don't think he'd quibble with the word 'desperate'. Dialysis is a stop-gap measure and not one that is forever.

   I am delighted that he has been given this chance, and hope that things go well from here on. Getting a kidney is one thing; and the vital one, but the road to be travelled afterwards is difficult. I just hope, with deepest sincerity, that it all turns out wonderfully well.

   There's the difference between his case and mine. He fought on through difficult circumstances all those years for this one chance at an outcome we hope will result in freedom from the tyranny of dialysis and many years of healthy life.

   There was a light always there at the end of that tunnel, though at times it was faint. No doubt he made clear his wishes long ago in a legal document had it turned out badly. 

   For GBM patients like me, advancing in age, having explored every reasonable option and experiencing daily the evidence that there is indeed no such light, we have to make up-to-date plans for our exit, and we need our families and friends to understand that whatever control we have over that, we will take. I certainly want as few decisions as possible over my death to be forced upon Tracey, but we have prepared as much as we can to try to ensure that my wishes will be translated into action when the time comes.

   The unknowns in my case are even more so than in the case of most people reaching the end of life from terminal disease. Brain tumours are radically unpredictable in effect and time, and in their progression.

   This makes my behaviour and quality of life similarly unpredictable, especially when my current treatment stops. Do I have to spell out some of the possibilities? I will if you like, but I won't right now.

   The discussion to follow is dedicated to my close family and friends, because I want them to be in no doubt that what will happen when it comes to life/death decisions will be as close to what I am hoping for as possible.

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  1. Hi Denis, have you written anything about euthanasia? Interested in links to any info you recommend on this subject. I would like to write (fictionally) about euthanasia, to better understand what I think and feel about it. Happy Easter.

    1. I have a great deal to say on this subject. Reams. Heaps of notes and references. Half-written blog postings. Yet I stand back from it for the moment. The reason is mainly that there is a general perception that euthanasia means the same as 'assisted suicide'. This is far from the truth and clouds the debate.

      If I do write about it, it will be soon. In the meantime, just let me say that suicide is, for me, not an option, though it is for many people with terminal illness. If they chose to do it in a place and/or at a time where no other person could be implicated or held legally responsible as a party to it [a criminal offence in Australia], there's every chance that I wouldn't regard myself as having the right to interfere with their decision.


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