In Gratitude

by Jenny Diski

  The end of the journey doesn’t come until you either die cancer-free of something else, or die of the effects of a regeneration of the cancer cells. Good and bad; from here to eternity, and from eternity to here. But I have been not here before, remember that. By which I mean that I have been here; I have already been at the destination towards which I’m now heading. I have already been absent, non-existent. Beckett and Nabokov know:

  I too shall cease and be as when I was not yet, only all over instead of in store.

  From an Abandoned Work

  The cradle rocks above an abyss, and common sense tells us that our existence is but a brief crack of light between two eternities of darkness.

  Speak, Memory

  This thought, this fact, is a genuine comfort, the only one that works, to calm me down when the panic comes. It brings me real solace in the terror of the infinite desert. It doesn’t resolve the question (though, as an atheist I don’t really have one), but it offers me familiarity with ‘The undiscovered country from whose bourn/No traveller returns’. I’ve been there. I’ve done that. And it soothes. When I find myself trembling at the prospect of extinction, I can steady myself by thinking of the abyss that I have already experienced. Sometimes I can almost take a kindly, unhurried interest in my own extinction. The not-being that I have already been. I whisper it to myself, like a mantra, or a lullaby.

  In between the metaphysics, the memoiring and a previously unknown addiction to vanilla ice cream, there’s been some doctoring, testing, diagnosing and everyday hovering and waiting. Plus standing by for the new grandchild, whom I don’t suppose I’ll know for very long, scoops of the vanilla ice cream and statistics that will no more keep me alive than the eggs, cream and vanilla pods. Still, I’m not looking for a reprieve, except that I’d like to get to know yet-to-be-born Flora/Edie/Jessie/Rosie or whoever she will eventually be who seems to have been doing upside-down headspins. More fun probably than being thumped through the narrow corridor towards the intolerable light in the birthing pool, where, as I write this, she’s hanging on by tooth and claw to stay in the previously cosy warm pool she’s been in these past nine months.

  About four months after finishing the radiotherapy, it turned out it had not finished with me, and I found my mild breathlessness becoming much more urgent. Quite suddenly I couldn’t climb a flight of stairs without stopping to catch my breath, I couldn’t walk from my bedroom to the adjoining bathroom two steps down without finding myself in a coughing fit; and then I had my first panic attack. The more I coughed the more I gasped for air, the more I gasped for air, the faster and more shallow my breathing became. I could feel the ‘floor’ of my lungs rise higher until there was no more room for any air to be taken in. Without doubt, I was dying of suffocation. It wasn’t a metaphor, it was an inability to breathe, to take in air; and I knew that I wouldn’t survive this attack.

  I did survive, of course. It took some minutes, though probably not as many minutes as it felt like. Gradually, the coughing died down, and the floor of my lungs dropped so that I could take in more air, until I realised I was still breathing and not about to die. I waited for ten minutes or so to allow my shocked body to calm down. This happened three times when I was on my own, and once when my daughter was here. I described it to the Poet, but I knew that he would understand it as a ‘panic attack’, a great but not life-threatening discomfort. An episode of distress, where dying and suffocation were just dramatic words that I co-opted to convey the horribleness of my experience. What I learned from speaking to Grace, who came from the local hospice to see me, was that the radiotherapy had inflamed my lungs, already scarred from the original pulmonary fibrosis. That was a known risk, but as it was later explained to me, the degree of the scarring and inflammation was much greater than had been expected.

  A couple of days later I fell down the two steps into the bathroom and ended up in A&E at five in the morning with a broken wrist. Even I could see the comedy: two terminal illnesses and now a broken wrist. And I had my travelling bottle of morphine to save the duty doctor the trouble of writing up a prescription. The following day, Grace gave me information, comfort and a plan of action at least for the panic attacks. A swig of morphine (a measure that was between a sip and a slug) before I started to move, a hand-held battery-operated fan to blow air into my face (this has no medical basis but has been found to lessen the feeling of suffocation in many people, and it did in me) and a couple of reminders to tell myself: to let my shoulders drop and raise my head, and to remember that this had happened before and I hadn’t died. The panic attack had so frightened me that I would have recited The Very Hungry Caterpillar backwards if it had been shown to help fend them off. A later fall left me with three broken ribs as well.

  The Poet and I, love each other though we do, needed some respite; he from worrying about my falling and breaking something every time he goes out, me from feeling a hopeless, helpless invalid, incapable of doing anything for myself. I was given a week at the wonderful palliative care home nearby, better known as a hospice – a word that causes a shimmer of death to run up and down the spine. I got lots of work done in spite of people popping in to introduce themselves and offer resources and massage, and the Poet got a rest from free-floating angst for a few days. The hospice people help with everything, co-ordinating the activities of the suited doctors and specialists who seem to have very little idea of what anyone else is doing. Within days of my key-worker palliative nurse being on the scene, all sorts of things were arranged and achieved. Railings for the stairs, classes in breathing technique, medication reviews that discovered the dose of nortriptyline I was taking for depression was too high and could be causing the postural hypotension that makes me lurch all over the place and lose my footing so that, in spite of the railings, I’d managed the broken wrist and the three broken ribs. So now (start counting) I’ve got pulmonary fibrosis, lung cancer, postural hypotension, pain with any kind of movement – like breathing – from the three broken ribs, and difficulty typing or lifting anything heavier than a small pillow. Next stage down, the steroids I’m taking to prevent inflammation have turned my face ‘cushionoid’ (new bit of technical learning here), which means rounder and fatter at the bottom, a shape my usually long face has never known, and my limbs weak. I’m like one of those young secondary characters in a Victorian novel who aren’t long for this world and have to spend the day resting on a chaise-longue taking deep breaths from time to time.

  Though I’m not young, I am not all that long for this world, it seems, but it’s hard to pinpoint how or when. The full lifetime’s worth of radiotherapy I was blasted with inflamed the fibrosis far more than was expected, but the chemotherapy, a horrible experience in itself, seems to have stopped the development of the tumour. Now I’m more likely to die from fibrosis than cancer, which might have gone into remission, but as deaths go, they’re much of a muchness (or as my overemotional GP said, ‘They’re both such terrible ways to die’). As it stands, I will be fighting for breath with both of them, although the wonderful palliative care nurse calmed my fears by explaining the steps they take to calm my body, so that I fall into a sleep and then a coma and die unconscious and in some comfort with the aid of intravenous doses, regularly increased, of fentanyl and morphine, drugs I take now in other forms for pain in my neck, the bust ribs and the broken wrist. Dying of lung cancer can be treated the same way, so the terror of death has been soothed to the fear of blank nothingness into eternity. A nonsensical fear as soon as you stop to think about it. Though think about it I certainly do.

  What no one can help me with is time. When am I going to die? How long have I got? I don’t feel what you’d call well now, but everything that hurts or is uncomfortable is the result of a side-effect of some drug or process intended to slow down the progress of the tumour or fibrosis. As soon as you ask ‘How long?’, you can see Onc Doc’s eyes shifting into eidetic motion to remember the figures for death in either case. He offers me statistics, smoothed to
take in the doubleness of my disorders. He can say between one and three years, assuming I don’t get an infection that my white cell system isn’t strong enough to prevent from turning into fatal pneumonia rather than a common cold. The uncertainty is real. Onc Doc’s skills are essentially statistical. Reading papers that include and conclude from other studies the mean average lifetime chances. But I’m not a statistic. As an individual, who knows? A friend of mine in his eighties had received chemotherapy and was feeling much better; along with his doctor, he was expecting a few more years of life, but he died two days ago from a heart attack, brought on in part by the stress and damage of the chemotherapy, itself a life-threatening procedure. I no more know when I’m going to die than you do. Statistically, it’s now better than it was: between one and three years. It doesn’t feel so urgent. The Onc Doc has partially signed me off to the fibrosis doc (although the organ is the same, fibrosis and cancer are two entirely different expertises, requiring two separate specialists), and then another range of statistics will come into play. But in reality, who knows? The oldest person I knew, my former father-in-law, died last week, aged 99, after telling several people he would like to die, that his arthritis was too much for him; he went to sleep and stopped breathing. That seems, though what do I know, as gentle and civil a death as I can imagine.

  In the meantime, logic and time aside, there’s the two-year-old grandson waiting at home with a friend, while his mummy has now had his baby sister. He had been knocking on his mum’s belly and shouting, ‘Come out, sister, we’re waiting’ (possibly another reason for her hesitation). But I don’t feel so gloomy about being dead long before his long-term memory has kicked in. I’ll be in some books and photographs and a few stories he’s been told. And some hazy memory, story mixed with reality. That’s what really distresses me. Idiotic to feel weepy about someone who has already given so much pleasure not having ‘real’ memories of you. Who does have real memories of their early youth? Still, the tears well. There’s narcissism for you.

  There’s nothing stoical about any of this. I’ve thought and felt it through in every possible way, and I can only make sense of the sadness because it is sad. Sad for me. Sad for others too, but in a much vaguer, normal, only-to-be-expected sort of way. Certainly I wouldn’t, like my former father-in-law, want to attend the funeral of my child. If I’m being over-logical about it all, repressing the pain, I can’t see it. I feel the sadness even more sharply, now that the new girl child has been born, at the idea of missing knowing what they will both be like, later, what they will become. But I can’t stop myself remembering that this is how it is supposed to happen. How many grandparents live to see the full development of their grandchildren? So the news medically is relatively good, but somehow, I’m still managing to mope.

  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 (nearly 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 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 in August 2015 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) in September 2014 in the London Review of Books. And I too have been knocking back pills that Nice has licensed only for specialist use. 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, 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 a
nd 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 a 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.