It's anniversary time again. Today marks the 15th anniversary of my diagnosis of Chronic Myeloid Leukaemia. That diagnosis, dependent on how early it is caught, gives a prognosis of about 4-5 years. The fact I'm here still typing away shows that, with the right treatment, you can beat that limit substantially. Regular readers will know that the aforementioned right treatment does come with costs though and I've been perhaps unfortunate on that front with rejection based issues but surely living a decade longer than you were expected to is considerable cause for celebration. I can say that even though much of that decade has seen me dangerously ill but it's still better than the alternative.
In more up to date news tomorrow night there is a show airing on Channel 5 called the gift of life that centres on the transplant team (my team) at the Freeman Hospital, Newcastle. There are three hour long episodes which will go into far greater depth than any of the other shows that have aired recently on the topic have had the scope to do. Hundreds of hours of footage were filmed and so it has had to be edited down fiercely, which sadly means the afternoon they spent with me has fallen foul of the editors blade. I have to be honest and tell you that because it does have that greater scope it might not be the right show for everybody to watch. It will include graphic pictures of surgery and it will almost certainly have cases where patients don't make it. My main hope is that people take away something from the show about what it is like to be in a position like mine but it's not just about the patients. I want people to be able to see what the transplant team go through too.
I've said before that I often tailor my message to the person that is visiting based on what I think they can handle. This is based on years of seeing people struggle to come to terms with how delicately balanced my life is and whether it is worth it upsetting them more. It's a little bit of a patronising conceit but I don't always want to be the one consoling people when it is me that's actually poorly. At first I didn't mind it as I realise that I'm not the only person suffering under my condition but it wears you down after a while.
The thing that's happening the most at the moment isn't really consoling people though as nearly everyone is, for want of a better term, comfortable with my situation but it's much more like dealing with their frustration and anger that the whole process is taking so long. It seems I have to remind everyone of how the odds are stacked against me in the pursuit of a fresh set of breathing gear. They can understand the individual aspects of the difficulty involved in pairing off a patient with the right lungs but can't seem to handle the statistical analysis that reduces my chances when looking at them collectively. It is literally like looking at a lottery. Your chances diminish with each factor you have to take into account. I have to match ALL 5, and that is why I've had to wait over 3 years now.
