‘Sometimes my burden is more than I can bear,
It’s not dark yet, but it’s getting there.’
(Bob Dylan)
So far, dying for me has been a very slow and gradual process, punctuated by the occasional drama. Each day, I find myself slightly less able to do things. As a result, my world has shrunk, both in terms of what I do and in terms of the physical space I occupy. I am now largely confined to my house, and therein to my study and the kitchen. This gradual process contrasts with other people we know who have had cancer. An American friend died of pancreatic cancer five weeks after diagnosis; a close relative died of liver cancer after only ten days. This reinforces my understanding that cancer is not a unitary phenomenon. In theory, I should have had plenty of time to contemplate death, but I have come to the conclusion that really there is little to contemplate. Nor do I think that there is anything mentally that I can do to prepare for it.
At the beginning, two questions dominated my thoughts: what is it like to die from lymphoma, and when is it likely to happen? It took me a while to appreciate the idiocy of asking the first question, but the palliative care staff that we have talked to were very reassuring that my death could be comfortable and pain-free. To the second question there are no answers; my type of lymphoma is so variable and so rare that reliable statistics are few and insufficient for very detailed analysis of such variables as survival rates. One of the registrars was bold enough to predict, in June 2017, that I was unlikely to be alive that Christmas. I’m still here a year later!
In many ways, having lymphoma has resembled accelerated ageing. Daytime naps have got longer and more frequent. My walking has slowed to a shuffle with a just comfortable range that is sometimes as low as about 20 yards. Getting up our stairs (we have 50!) has long been a slight challenge; now, it is a very serious business indeed. The deterioration in my hearing and memory has accelerated, as has my tendency to shout abuse at inanimate objects such as impenetrable food cartons. My arms and legs are emaciated sticks, my belly is enormous and I need braces to hold up my jeans. My balance is not good and I can no longer put on my trousers standing up. My left leg is particularly affected and I have a daily tussle with my left foot and my underpants.
My slow decline has given me a lot of time to clear up my life so that my family is not confronted with a mess when finally I do die. Apparently in Sweden there is a fashionable activity called ‘death cleaning’ which involves throwing away most of one’s possessions. At times this has become obsessive with me; if Carolyn wants to find her credit card bill for April 2015, I am confident she’ll be able to. On the other hand, I have done nothing to sort out and dispose of a huge pile of books, many of which are academic texts of no use to anyone. Nor have I taken down all the pictures, as suggested by the death cleaning enthusiasts.
