Since I last posted in March this year (nine months ago...), I have been learning to make a friend of fatigue in order to boost my recovery. Boost is the wrong word, perhaps, because the recovery from last year's treatments to a state of much better health has been slow and long. But I have gradually felt stronger these last few months, thanks to the return of my appetite and the steady increase in energy that is enabling me to do more things. When I say more things, these activities are still largely confined to the house and garden; but I can walk without the stick now, if not always in a straight line, and with frequent rests. I no longer feel sick when I'm out, and I even managed to get to Nice in the summer with the help of my daughter. That showed me there was life out there, beyond the treatments, and I could still invest my presence in the world with some quality of joy and verve.
I have learned to make a friend of my bungalow, which I disparagingly referred to as 'The Bunker' when I first moved in, this being a considerable down-sizing after my previous home ; but now I am reconciled to bunker living. This may be because I have always been a natural recluse, and perhaps a little too tolerant of my own company; but this has helped me adapt to the state of invalidism forced on me by the brain tumour. This got me thinking about invalidism as a state of enchantment from which only a shock, an external event, or the disease making a dramatic reappearance, can free me for action. The best account of this state is Thomas Mann's great novel, The Magic Mountain, in which a young man goes to a Swiss sanatorium to visit his sick cousin, a trip of three weeks which turns, through various twists and beguiling events, into a stay of seven years. It is a book to savour, and ideal for bunker living. In fact, since this summer, I have worked my way through several long novels, thanks to my renewed concentration. My consultant (the splendid Duncan) told me in October that I should have more years yet on the old continuing treatment of Herceptin (my lifeline) and Tamoxifen with which I am continuing beyond the usual five year prescription for this drug. So things have returned to three weekly infusions and daily tablet popping, and soon I will have lived like this for six whole years, which hasn't been all bad, really, excepting, of course,the horrors of last year's tumour.
Duncan told me that the funding for cancer treatments was protected, but implied that the new regime demanded that doctors complete a case by case application for each patient review. There was a pot of money but increased admin, and this sinister sort of decision making put clinicians in a terrible position: 'We haven't got the four hours it takes to fill in each form for each patient and I wish they'd just let us get on with our job in helping people.' He went on to say that in my particular case, he had 'absolutely no way of knowing' if discontinuing my expensive treatment would cause a sudden upsurge in disease process, or if indeed there was no more disease to treat; but he believed in erring on the side of caution and sticking to the current prescription. While the best news, of course, would be to hear I was cured, I know that, with advanced disease, I will never hear that from him, and so am well contented with the status quo. Thanks again, Duncan, and the neurosurgical team at Derriford, for giving me these extra enchanted years. I watched an old Storyville documentary last week about a British neurosurgeon who visits Ukraine twice a year to operate, gratis, on seriously ill patients with horrific and often visible tumours. The hospital there were using adapted Black and Decker drills to get into the skull, while the NHS trust at Henry Marsh's (the British surgeon's) London hospital was throwing away 'perforator' fittings, costing eighty pounds each, after every patient, a wastage of hundreds of thousands of pounds a year. But that was in 2007. Now we have the unholy alliance of Cameron and Clegg guarding the money, and I know it won't be thanks to them, or their policy towards the poor and sick, that will save the lives of people like me. In fact, had I developed this disease before the election last May, I wonder if I would have been put on the treatment I am now, thanks to Duncan, receiving indefinitely. One thing is for sure, I will never compromise my vote by strategic voting for the Liberal Dems again.
