2.15am Saturday, 18th June [2016]
On Friday, 10th June I texted Martin to ask if he would officiate at my funeral. I already realised that I was dying. A week later I commenced chemotherapy for acute leukaemia, just three days after my diagnosis.I accepted treatment in good faith, and am grateful for the extra time it has already given me—I was indeed close to death. After a full day of many hours of intense intravenous treatment I am beginning to feel its effects and am quickly attempting to ask some questions. When I first met the consultant at the GU clinic in Exeter seven years ago he pointed out that I was an unusually analytical patient, different to what they were used to. I was surprised, as I have always considered myself as normal, 'not normal' was not how I saw myself.Tonight I realised with a shock that I am indeed dying, not physically, but as the person I have been until now. Over the next few days I shall change dramatically, physically and mentally. I shall become a leukaemia zombie, I shall enter a strange underworld, and if I survive, I shall emerge as a different person.Seven years ago, after my cavernoma bleeds, I also emerged as a different person, 'the same but with the brakes off', as Brana described me. In a week's time the drugs will have smashed me, physically and mentally. Just now I am having relatively a honeymoon, but by then I shall be changing, as the powerful drugs destroy my immune system. My personality will be deadened. I shall be very limited in what I can do, as vomiting and diarrhoea take over.If I survive, this will last for about five months, and I shall be returned to my wife and former home as a changed person, but this time 'the same, but stultified'. I learnt tonight about chemo brain. Not only will my body be ravaged to attack the cancer, but my immune system too, and some of my intellectual abilities. I want to live for only a few essential items. For me: to complete my writing and research. For others: to enjoy time with my soul mate, my wife, with the many wonderful friends I have made these past years, and my children. I say I have no bucket list and I mean it: those few items are what matter. If I survive as a shadow of my former self that is not very attractive.So much has not been said, and I have not had the opportunity to discuss everything. My character is to ask questions, to obsessively want to know everything there is to know about a subject, and then I calm down. I am also realistic. When a trustee of Cavernoma Alliance UK I often communicated with people newly diagnosed with cavernomas, and I even did this last Saturday at the CAUK International Forum in London. I have learnt to recognise that everybody is unique and responds to a diagnosis in their own way. There were those who were in total denial, those who wanted the cavernoma removed at all costs, so that, as they thought, they could go back to how they were before. I never gave advice whether to accept or refuse, but I soon learnt that neurosurgery is imperfect. It didn't always cure a problem, like epilepsy, and often people had greater neurological deficits after surgery, but I also noticed that in America, reflecting its different medical services and funding, surgery is always the first choice where possible, reflecting its profitability.As I write this, I am quite aware that my handwriting is deteriorating. I am feeling the first slight pangs of nausea. Over the next week my transformation wll continue, my personality will be lost in the hell of the treatment. My family and friends will begin to be shocked by the changes they see in me. Some will be frightened by it, and we shall lose sight of each other. And if I survive to go home at Christmas, I shall be a different, diminished me. That is very scary, and I wonder if I want that. 2.45am.
Nine months later I can look back and see that initially I wasn't far out in my expectations, but I was more pessimistic than I needed to be. It is true that the first fortnight was pretty awful, I lost a huge amount of weight, I collapsed twice and hurt myself, I was unable to even listen to music. Then I was able to do my daily walks, when I was able to leave my isolation before 7am and after 7pm, sometimes walking the two floors of the hospital, sometimes circumambulating the whole hospital campus.
"Chemobrain' did mean that I was unable to read, and unable to write, but I was able to listen to music, and the songs of Georges Moustaki became my medication. I listened to them, I wept to them, and gradually my usual ebullient self reasserted itself, and I started doing what I had hoped to do, with my spare computer in my room with me, as I sorted out two decades of computer files and eventually started writing my blog three months after my admission to hospital.
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