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| Chapter 4 - Treatment |
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We live in a very reductionist, scientific, white coated age where those-who-know give us, the lay people, their expert opinion. We have little knowledge in their area of expertise so we take them at their word. They are the experts. They know. This public attitude is starting to wane. BSE, E Coli, and Salmonella in eggs have started to put paid to these notions. |
We expect the doctors to ‘Know’. But why should they? They are not dealing with a car which has a faulty alternator or an engine with a blown gaskets. They are treating the human body and cancer. They treat illnesses whose causes are not fully understood. The progress of these diseases may or may not depend on unimaginably complex genetic switches and their treatment resembles attempts to crack a nut with an atomic pile-driver. They confront complications that can arise at every twist and turn and which are as lethal as the illness. They try to coax the body’s ability to fight back, to harness a very complex immune system and lots of other systems which are poorly understood in order to keep itself alive. |
Percentages are fingers in the wind, averages, guesses. They are not reality, but they are useful for a parent to cradle and mentally caress. They serve their purpose well until there are really no percentages left. Percentages are useful when you are in crisis, when every day can bring unexpected leaps forward or backward in your child’s illness. Whether they are accurate is almost irrelevant, but they give the parent a fix on the grey shifting hazy world that is their child’s disease. |
After Max's leukaemia, as far as the outside world knew Max's treatment was over and all was OK. Not so. For nearly three years we lived with a 50% chance of Max’s survival. This is not a useful percentage when contemplating your child’s future. |
How does it feel to have a percentage put on your child's life? I often used to stare into the night sky and contemplate the meaning of this 50%. A surreal scenario comes to mind where I imagined making a deal with the Great Accountant. If I was given the theoretical choice, would I want to know the ultimate outcome and avoid the torture of waiting to see if he would survive? |
Great Accountant – “Well my son, I believe you have a special request. You want a deal I believe.” The word ‘deal’ is said with much distaste. |
Me – “Yes Your Holiness, I want to know if my son will survive.” |
Great Accountant - “Time will tell, my son, time will tell.” |
Me – “Yes, but I haven't been a bad person. Couldn't you just let me know now. I mean in the long run what difference does it make? In the long run, it will all turn out the same. At least we can prepare ourselves. Please? I've never asked anything from you before.” |
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