Amidst all the positivity about the positivity of this series of articles there has been some concern that I cannot only be experiencing such positivity all the time! Which is of course true.
If I were then I would be worried about my mental health and would be questioning my relationship with reality. This episode therefore hopes to offer a more prosaic insight into daily life and minute-by-minute experiences of living with a terminal illness.
My health is clearly deteriorating, albeit incrementally.
It is not following the straight downward trajectory of the hypotenuse of a right angle triangle, but instead more resembles the crow-step gables that feature on 16th century Flemish-influenced houses in the East Neuk of Fife. Along and down, along and down, in a steady descent with regular but modest periods of plateauing.
I am hoping for more plateau periods in the near future as pain relief has been changed to a slow-release morphine-based regime with liquid morphine top-ups for ‘break-through’ pain. This means far fewer pills to manage apart from anything else, for my increasingly absent-minded tumour-addled brain. It also makes me sleepier.
As my life narrows in terms of both its location and its content, I find myself aware of the losses that have inevitably occurred.
My primary location is now a very comfortable Ercol chair that once belonged to my late mother, and re-upholstered some years ago after a near total destruction by the also late Fearless Cat Scooty. Around this chair on the floor and the sideboard are strategically positioned my laptop, chargers, radio, books, notebooks and pens, Swiss Army Knife, hiking pole, water bottle, tray of meds, Rescue Remedy, two champagne flutes, a very elegant tall mauve orchid, an intact sea urchin from a beach near Skerray on the North Coast, a piece of Greek marble and the stereo remote.
The content is harder to itemise. I spend a lot of time in the aforementioned chair. I look out the window and see the sky and clouds and trees and weather, birds and squirrels and men in hi-vis jackets on the railway station platforms beyond the trees. I hear goods trains and passenger trains, our neighbour’s very yappy dog, children on a trampoline, an occasional police or ambulance siren, a distant rumble of traffic. Small city life.
The principle loss is of mobility and thus of autonomy. My bicycle is in its caller and I know I will not ride it again.
I am glad that I did not know this the last time I cycled into town, although it was a tough ride and I struggled to get off and on at each stop. I know I purchased bread, smoked salmon, herbal tea bags, garlic salami and a potato masher. Life’s essentials. I now walk short distances and only with the aid of a stick. Otherwise I take taxis and accept lifts.
I have also lost my working life, a role that carried far more within it than I realised. I miss being the professional person I was with my students and university colleagues and workplace supervisors. It stopped so suddenly, just a few months ago, without the planning that a resignation or a retirement would have allowed for.
I miss the shopping for bits and pieces, vegetables, bargains, when I was out on my bike - never one for the big ‘weekly shop’ I preferred to shop as required for whatever I was cooking later.
And I miss cooking, as I cannot stand for any length of time and I cannot bend down to the fridge or the freezer (or at least I can get down but cannot then easily get back up!) or pick up something that I drop.
Recently I declined an invitation for lunch, saying that we were having a quiet sad and low day and would just stay at home. I realised that the surprise was surely that this did not happen far more often. I suspect therefore that I have set myself an impossibly high standard in terms of dealing with this nightmarish terminal cancer situation. I write about it, comment on it, engage with it, describe it in perhaps excessive detail and tug people along with me should they feel able to share the journey. I speak with Dignity in Dying and study palliative care journals, I harangue my MSP about her voting record on Assisted Dying (her opposition is ‘faith-based’ and she also opposed Equal Marriage - so no wedding or funeral invite for her!) and recently gave an interview to a national newspaper. My death, ironically perhaps, has become my life. Is this healthy? And does it matter when my health is more than a little compromised these days?
Other people have bucket lists, a curious American import I suspect like muffins and trick-or-treating and school proms and fake news. I suspect that the bucket and I passed each other going in opposite directions some time ago. I have no desire to visit Disneyland (yeuch) nor to descend the Falls of Shin in a wooden ‘Return to Lochinver’ fishbox. No ridiculous balloon trips call me up up and away, dolphins and whales are safe to swim alone and unhugged, coral reefs shall remain unmolested and I am sure I saw some of the Northern Lights from the back of a rackety Honda 90 moped on the A947 between Aberdeen and Fyvie in 1990. Rows of green billowing curtains, and quite stunning.
A return visit to Kefalonia would have been good - we were both looking forward to that and we would have been there this week had things been different. I wanted to swim in the warm Ionian Sea again, drift and gaze at Ithaca and wander back along the shore with Susan to a cafe for a snack and a beer. I wanted to sit on the balcony of a modest apartment with my binoculars and watch the fishing boats bringing in their catch for the local tavernas. I am still wondering if I can get to the wild Scottish seas again. Ullapool is unlikely. But Stonehaven or Pittenweem might do. It was a small bucket I guess, maybe just a bucket and spade.
Instead I listen to a lot of music, undistracted by thoughts of what I ought to be doing instead.
CDs of JS Bach’s Goldberg Variations and The Well Tempered Clavier. Montiverdi’s 1610 Vespers. Salif Keita and Leonard Cohen. Chilly Sibelius Symphonies. I also listen to the radio, carefully selecting the quality from the inane and puerile. And of course I write.
I read as well. As my right eye drifts away on its own uncharted course this will cease but it is still possible at the moment. I read short stories (from the three excellent anthologies edited by Philip Hensher and published by Penguin, probably all a short story reader requires) and articles in the London Review of Books. I recently read a fine book called ‘Being Mortal’ by American oncologist and surgeon Atul Gawande about the desperate need of the medical profession to prolong life and delay death at any cost. And occasionally I simply sit and cry, cry for both of us, at the enormity and horror and sadness and grief of it all. And that is OK too. It passes, because no one ever cried for ever. Then I blow my nose and wipe my eyes and face, have a few drops of Rescue Remedy and a squirt of CBD oil, haul myself to the kitchen to make a mug of tea and have a generous portion of chocolate cake for sustenance. On Thursday mornings I play music with my recorder group although soon I may not manage to read the music. Have I time to memorise the Vivaldi Sonata?
So for those of you who have asked, ‘But what is it really like?’ perhaps this is a partial answer
My next task is to undertake a clearing out. I look at the stuff that I have carried with me throughout my life, boxes of papers and diaries and THINGS from address to address, and in much the same way as one would when contemplating a move to smaller premises, this is now the time to simply get rid of things. I will just burn the diaries, make a ritual of it (this usually means involving prosecco and a fish supper), all six foolscap hardback notebooks, handwritten accounts of what seemed so important at the time, from 1979 for heaven’s sake. (It does feel quite hard to do though. But why? Has anyone else done this?)
There is no storage facility where I am going. As we say in Scotland, ‘Ye cannae tak it wi ye.’
EDITOR: You can read Part 1 here
You can read Part 2 here.
You can read Part 3 here.
You can read Part 4 here.
EDITOR: Alison very sadly passed away peacefully on 8/8/19. R I P Alison, you will never be forgotten. ❤️
