Who’ll be last?

Jenny Diski

If it were a race, the first man home – except for Iain Banks who won the trophy by a mile – would be Oliver Sacks (announced 19 February – died 30 August), with Henning Mankell (announced 17 January – died 5 October) a close second. Lisa Jardine won a race of her own, staying shtum publicly, her death a surprise except to the few who knew. So Clive James (announced May 2011 – ?) and Diski (announced 11 September 2014 – ?) still battle it out for third place. In the other kind of race, last man standing, James and Diski would be meandering towards first and second place, Sacks and Mankell having already taken third and last place. These are the writers who within the last year or so (five years in James’s case) have publicly announced their forthcoming death from cancer, of one sort or another.

It’s a delicate balance, this publicising of one’s cancer. The public’s interest is fixated on when each of them will die. For some reason cancer is the disease of choice for public tongue-wagging. It has that something, that je ne sais quoi, not just death, but how long known beforehand: how will she die, should she choose to try for a longer life by accepting treatment, or settle for palliative care which at its best is a comfortable death without pain. What Francis Bacon called ‘a fair and easy passage’, which I used as the title of a TV play written and broadcast long ago. An announcement of forthcoming but more or less certain death by a public figure opens our eyes to death, the one that is coming to us all. I don’t know why but cancer is the definitive illness. People run in circles and slide down towers to show their solidarity and ‘earn’ money for research. But there is an edge. James wisely jokes about it, but ‘they’ don’t really seem to want a cure or long-term relief for cancer sufferers (unless it’s a family member or a close friend): it seems to spoil the purity of the tragic. No one so far as I know has written a column or agreed to an interview to announce that they have flu, or arthritis in their left knee, and how the medication is going. It’s not that flu or arthritis couldn’t be made interesting – it all depends on the writer – but in the cancer cases, it isn’t the quality of the writing that’s being judged, but the murky details of the illness that will remove each candidate from the board, and if it doesn’t the audience will feel cheated.

‘I bet you’ve found faith now,’ believers wrote to Christopher Hitchens when he announced he had terminal cancer. He insisted he hadn’t. I’d never been envious of those who believe in an afterlife until now. It would be so much cosier than dissolution. She’s gone to the next room. Nope, can’t manage it. She’s gone to dust and rubble. Gone nowhere. No where to go to. No she to go to it. Much easier to be convinced you will be met in Elysian fields by a thousand virgins, or drink from fountains of Manhattans. I can’t even get close to what they call faith, though I quite see Pascal had a point; and so did Wittgenstein (though quite wrong globally) when he said: ‘Go on, believe! It does no harm.’ I don’t and won’t and there it is.

Doubtless there are writers or public figures who have recently been diagnosed with cancer and have chosen not to mention it. Quite likely, among those of us who’ve written the ‘I’ve got cancer and I’m going to die, watch this space’ piece are some who are grateful for a subject that will indeed last them a lifetime – provided the lifetime is relatively short. But already Clive James, after telling the world five years ago that he had untreatable leukaemia, has had to apologise for not yet being dead and explain that doctors have produced a medication that can keep his kind of leukaemia under control. He seems to feel that his readers are wondering if the whole thing was maybe a hoax to get him more attention. He did say last August that he was living on borrowed time, though he could understand the impatient foot-tapping of his readers. It’s obviously lost him the ‘who dies first’ race, but in the ‘last man standing’ race he has all to play for. ‘Which writer lived the longest and wrote the most columns and/or books after announcing their forthcoming death?’ I offer this as a question to University Challenge or a ‘What comes fourth?’ puzzle on Only Connect. Jesting as hard as he could, James said: ‘I am waiting for the next technological advance which I hope will enable me to live for ever.’

I am also alive, having announced my lung cancer (with a side attraction of pulmonary fibrosis: two fatal diseases – I don’t do things by halves) last September in this paper. And I too have been knocking back pills that Nice has licensed only for specialist use, not to be prescribed by regular GPs or obtained at pharmacies. Or I was. It took four weeks to build up to the full dose, which was three pills three times a day with meals. The aim, as with Clive James’s medication, is to keep things on an even keel. No cure is expected, just a slowing down of the deadly events going on inside me. My cancer is sitting where it was, having been properly scared by a dose of chemotherapy, but the fibrosis has been having a private party since the course of radiotherapy livened it up no end. (My fibrosis doc was consulted by my onc doc as to whether I should have steroids to prevent the deleterious effect of radiotherapy on fibrosis. He said he had no worries about that.) So, as of my last scan my cancer hasn’t gone away but is keeping quiet in its corner of my left lung, while the fibrosis situation is an unknown until I have a scan at the end of November, but is much worse than when I first wrote about it. How many lung cancers equal a rapidly inflamed fibrosis of the lung? I stopped taking the pills after a month or so because they made me sick, nauseous and sleepy. The Papworth doctor said that was OK: there was another pill I could try, but after that ‘there will be nothing else we can do for you.’ My pills might keep me alive for a year, the consultant said, with a doubtful side-to-side movement of his head.

Unfortunately, this three meals a day thing is not a habit I’ve acquired in my time. There is a wall of misunderstanding between the Poet and me.

‘I can’t eat lunch, I’m not hungry.’

‘You don’t have to be hungry, just eat enough lunch to take the three pills with.’

I’m stupefied at the thought that it’s possible to eat when you aren’t hungry (though there are apparently people who can), just as the Poet is stupefied at the notion that you have to be hungry in order to eat. I snack and if the Poet didn’t cook, wouldn’t eat what anyone would call a ‘meal’ for days on end. The first time the ‘You must’ ‘I can’t’ debate happened the winner was, of course, me. I agreed to a small bowl of rice with sweetcorn and peas. Who couldn’t manage that? I managed about a dessertspoonful, taking the pills as directed. Within twenty minutes I was vomiting the whole mess into the kitchen sink – couldn’t make it upstairs, not enough breath. There is nothing I dislike more than being sick, though I’ve recently discovered that a panic attack that involves being unable to take in any air runs a very close second. I have no more to say about it. Except that I did show the Poet I wasn’t just being faint-hearted. ‘Exactly,’ he said, ‘it’s psychological. You were sick because you wanted to show me that you couldn’t eat if you weren’t hungry.’ This debate – is throwing up a physical or psychological response to three pills and a small amount of food? – went on for a while without resolution. Though if the Poet had the slightest inkling of the extent of my dislike of vomiting – you could call it a phobia – he would never have suggested it was voluntary in any way. My stomach had to be well-lined with food, so that the extremely potent pills could be digested and not rejected by my body, designed as it is to keep poison out of my system. So now, waiting for the next and last pill, we’re in a bit of a quandary.

Do I want to live another year or so, or do I want to throw up, feel ill and eat when I haven’t the slightest appetite? That is a new question. I have to digest it before I can begin to answer it. A decline caused by fibrosis or lung cancer is very unpleasant. But throwing up that night, and the prospect of stronger and nastier medication, left me thinking about the balance. Worth another few months? Worth it for whom? How miserable will these extra months of life be? What the docs call quality of life measured in qualia. Versus, I suppose, no life at all. I had believed that Francis Bacon’s ‘fair and easy passage’ was a real possibility. But I no longer trust the hospice key worker’s assurance that the dying process can be made painless. There was an unpleasant incident recently when I was told I could have a week’s respite (for me and the Poet) at the local hospice, and ended up leaving ten minutes after I arrived – they had no record of my request (granted twice: the week before and the day before) for a single room. A bed was available in a four-bed room, but a need for privacy and the degree of my depression made that impossible. I wanted a private place to cry where no one would be upset or ask me to stop. I was polite, I hope, but very disappointed. Later in the evening a doctor from the hospice called and told me that they ‘don’t provide respite care’ and couldn’t possibly guarantee that there would be a room for me when the time came for dying and palliative care. I had thought that both things were precisely the point of the hospice movement. I was shaken and distressed. The doctor later phoned my GP (not me) to say that she thought she might have upset me by being too definite in what she’d said. Well, we all have our bad days. But who the bad days affect matters too.

People offer me things to live for. (Another TV quiz show?) ‘But what about the grandchildren. They’re worth living for, aren’t they? And family and friends?’ But finding what is good about life makes their loss all the more miserable, even if you know there will be no you to miss anything. In this long meantime, dying sooner rather than later can be upsetting. Additionally, how much do I want to be dependent on others for my everyday life or, indeed, for finding a reason to stay alive a little while longer? Missing a few months of feeling awful, being dead, versus not missing those months of feeling awful. Dead, at least theoretically, is the less painful of the two options, assuming that dead equals not being at all. Whatever terror there is lies in the present fear of dying, not so much of death. The stoics tell me that I’ve been ‘dead’ before, prior to my birth, and that was no hardship, was it? Back to Beckett, I think. So that’s how I am at the moment of writing this. But of course it’s more complicated than that, more complicated than is allowed by the linear business of writing one word, one sentence, one paragraph after another with the intention of being coherent.

*

I have a feeling that if I describe my daily life, ‘the reader’ will react with sympathy for the blank, sedentary existence my condition causes. The thing of it is, though, that my daily life is (with obvious exceptions) very close to my idea of a perfect existence. The day usually begins with the Poet and me having tea in bed. I also have porridge or Weetabix (or did before I revolted over taking the awful pill). Every third day my Fentanyl pain patch has to be changed. Not cancer pain but long years of chronic pain in my neck. Then we generally moan about the news, our dreams, the awfulness of now compared to then, the awfulness of then compared to now. An hour or so of this and the Poet gets up, washes, spruces himself with one of the strange, expensive perfumes he has on his bathroom shelf. Not that he’s a narcissist; well, he is a narcissist, but he’s also, I think, chasing the scent that is his spirit smell. He has about a dozen that are close, but none of them so far is quite it. His totemic smell. So further investigations and purchases are intermittently required. Knize Ten and Géranium by Dominique Ropion for Frédéric Malle rate very highly, but there’s probably a scent out there somewhere that is more essentially him. This is much the same attitude as I have to clothes. I look now at a handful of catalogues or I look online, but when I got around, in shops, just sometimes there was a garment that had been patiently hanging on its hanger waiting for me to find it. It’s a mystical thing and also expensive.

When he’s finished with the shower, the shaving, the unguents, he gets dressed. So far so uninteresting. At this point, he writes on a white board on the back of the door the events and times of the present day. Since a few months past, I have lost all sense of where we are in the week. Every day for me now is usually Monday, or sometimes Sunday, occasionally Friday. You know that certainty one has about time and its larger chunks? Well, I don’t have it any more. Since the treatment started, I have to check (and often recheck) the day at least and sometimes the month. Still, not a really big deal, though unsteadying when I thought I had that cracked around the age of six or seven. While the Poet eats his breakfast in the kitchen – no porridge for him, but homemade granola, lightly home-stewed berries and plain yoghurt (shop bought, I’m glad to say) – I begin my day, which involves straightening the bed and getting my laptop on my lap. The Poet goes off to college or the library and my day’s work starts here, between an hour and three hours usually, either on these memoirs or the monthly article I write for a Swedish paper (in English, to be translated into Swedish. Strange). Work finishes when it finishes, with me tired out, physically exhausted, or I discover that I have closed the lid of the laptop and without thinking declared that’s that. The Macmillan book of cancer treatment says it can be as long as two years before the exhaustion goes, and that doesn’t take account of my original pulmonary fibrosis, fired up to lethal levels (and anyway incurable) by the radiotherapy. And then the big decision of the day: do I put away the laptop and sleep, or do I have a shower and get up? It makes no difference except that it feels silly to shower, clean my teeth and dress and then take everything except a T-shirt off and get back into bed to sleep for between one and three hours. As differences go, it’s vanishingly small. Either way I end up back in bed, exhausted. More if I’ve washed and dressed, and much more so than before my cancer treatment started. Of course, there’s the wash and dress first option, then get undressed and get into bed to work (but actually having to sleep off the tiredness of having got up in the first place). So many options, so few options. And so many ways of operating them.

Eventually, after teaching, or poking around in the University Library, or writing references (when do the poems get written?), the Poet returns, for lunch or supper which again I have to eat, against my better judgment, in order to take my pills. Then I shower, or wash, if I haven’t already, and dive in slo-mo into a djellaba thing or baggy pants (not baggy enough since the steroid weight-gain catastrophe). I read, we watch some TV and chat, and then, around ten, I go to bed, having taken my handful of anti-depressant pills, which serve me better as sleeping pills. End of my eventfully uneventful day.

*

Tomorrow is, or so the Poet insists when it comes, another day, but I usually say ‘Sunday’ or ‘Friday’ in answer to his question or my own testing. My two-year-old grandson, when asked a question he can’t or doesn’t want to answer, says after a moment: ‘Ella.’ Which, I think, serves for the ‘Fuck off’ that I’ve been forbidden by his mother to say in front of him. I might adopt this ploy, and each instalment of this memoir/cancer diary will be filled with the word: ‘Ella’, from top to bottom of each page. That’s a pleasing notion. Restful. Dear keyboard please repeat copied word – ‘Ella’ – to end of memoir. Cf:

Have written more than a hundred pages and not got anywhere yet. My calendar is getting confused … Don’t think I can go on. Heart, head – everything. Lolita, Lolita, Lolita, Lolita, Lolita, Lolita, Lolita, Lolita, Lolita. Repeat till the page is full, printer.

My calendar is frighteningly full, to me. It no longer involves the arrival of couriers delivering my pills or the district nurses taking blood to see if the pills are damaging my liver; the senior psychiatric nurse who has brought a fold-up wheelchair in case I’m taken with the idea of a wheel round the Fitzwilliam or the Botanic Garden. The geriatric psychiatric consultant comes every two or three weeks. On her last visit, she decided there wasn’t much point in changing the pills around, adding this or upping that, because my depression is ‘well-founded’. This distinction is new to me. It presumably replaces the now disgraced endogenous/exogenous types, abolished by the latest DSM because, I suppose, they found a couple of descriptors they like better. ‘Well-founded’ and … actually, I don’t know what the new word is for ‘endogenous’: ‘She’s just like that,’ perhaps, or ‘idiopathic’, which is also the description of my kind of fibrosis, which might have been caused by working in asbestos-lined factories or spending quality time with certain birds, but wasn’t. It means ‘don’t know how that got there.’ Another use for ‘Ella’. Why have you got pulmonary fibrosis? Ella. Do you want to be wheeled round the Fitzwilliam? Ella. Meaning I’d like to look at a couple of pictures I especially like, but don’t want to be wheelchaired. Maybe I’ll Google the recent divisions of depression later on, between naps. ‘Well-founded’ has a double response from me. On the one hand it tells me that I’ve a perfectly good reason to be depressed (dying sooner rather than later from two incurable diseases and haunted by the memory of my former GP saying, in a torment of pity and tactlessness: ‘Oh Jenny, they’re both such terrible ways to die’). I presume, if I weren’t depressed by that, I would be diagnosed as being in pathological denial or psychotic over-optimism, but no one has ever suggested that I suffer from either of those. Sometimes other members of the Cambridge health team turn up: occupational therapists who have organised grab rails for nasty spots where I might fall and break something more than my wrist; outreach workers from the local hospital or hospice who have also given me a course of six foot massages. Very nice, but I don’t know what I’ve done to deserve them. I even have my very own friend. Sourced from the Poet’s many pals (who I like but usually don’t go out with him to visit or ‘dine’), my new press-ganged friend pops around once a week or so and we gossip. That’s very nice. I enjoy it. Then there’s my daughter and her frighteningly large family – two small children and partner. Vast by my miniaturist standards. One child good. More than one, tempting fate. But also very nice. I get more breathless but less bothered by it. I get out of the house just once a week when the Poet drives me to the top of our road, to have my hair washed by my splendid young hairdressers. They are sweet and kind and seem to have substituted ‘ah bless’ with ‘definitely’. ‘My hair is a real mess.’ ‘Definitely.’

So having given up on the vomit-making pill, there is one other, I’m told, I might try but after that, ‘There’s nothing else we can do for you.’ Doc language for ‘You’ve failed us and you’ll just have to die, which is not our speciality, so goodbye.’ Or as my grandson would put it, ‘Ella.’ My breathing has got worse and I can’t get to the car without waving an electric hand-held fan in my face and swigging on liquid morphine. A pain in my left side has suddenly ratcheted up times ten. I’m a bit of a wreck. Actually, a super-sized wreck. I presume that the three stone I put on within two weeks of starting steroids make me all the more breathless and less able to pick myself up when I fall. I’d never thought about it before but the weight you are is the weight you carry. Literally. I suppose all this is what most people experience. It’s either dying suddenly in a car accident, or having a helicopter fall on you, or one of your many organs that manage your many other organs going out of kilter and spinning the whole system into a whirlwind heading deathward. I’m perfectly sure that there are quiet deaths that creep up on you gently at a decently old age, or thanks to skilful palliative care, and that I must hope for that sort of ending.