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Spray it silverJenny Diski

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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 nortryptyline 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 over-emotional 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? My oldest friend, 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 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.

Everybody leaves home​ , almost everybody. How you do it depends on the times and one’s own experience. Although I’d lived with plenty of uncertainty by the time I was 19, leaving Doris’s after four years was very frightening. I seem to be made more anxious by experience rather than more confident. I wanted, and for a while got, a place of safety. After a dismal, crazy, wrist-cutting time in the bedsitting room I’d taken over from Olwyn Hughes, Ted’s sister, I began to decline, in spite of my cunning plan to spray everything silver, as the linings were. (My first day there, as we swapped ownership, Henry Williamson told me, just as he was leaving after tea with Olwyn, the ‘big secret’ that T.E. Lawrence was killed because he was riding his bike dangerously fast after a call from London to take over the British Union of Fascists. ‘You are a swallow among the starlings, my dear,’ Williamson said to me – at least I wasn’t an otter among the badgers.) For the next two years or so I was in a variety of psychiatric units, and for me these were all places of safety. Regularity, a schoolgirlish gang of ill-disposed young women, no responsibilities and twice-weekly sessions with methedrine and its friendly syringe and the shrink telling me I was worthless. It gave me no future, but a safe place to wait and see. Despite the clean sheets, crazy nurses, friends, enemies, dramas, everything an institution can provide along with the expectation that I and the others would act out, the time eventually came when I saw that I couldn’t really spend the rest of my life rattling from bin to bin. I overdosed again and was sent by R.D. Laing’s colleague Aaron Esterson to an experimental group therapy clinic, where we spent all day in differently constituted groups working out our various problems with ourselves, using each other as exemplars. I lived during that time in a druggy flat in Covent Garden (on National Health benefit) and took all the chemicals I was offered, fortunately without dying, as some had. It was all a matter of luck, or some fierce inner determination to survive no matter how much I insisted I had no interest in being alive. I suspect the latter, though I’m loath to admit it. Even now I have a sense of shame at having survived to my late sixties. Everything I did looked like a lurch towards death, yet everything in my life continued. I overdosed with some seriously lethal barbiturates in a solitary room in Great Portland Street only to discover that the methedrine I’d previously been injecting myself with was in fact an antidote to barbiturate poisoning. I took the cure before I took the poison. I felt I shouldn’t be alive, and in common with my headmaster, that I was always ‘falling on my feet’ though it was never my conscious intention.

So the acting out and the drugs passed me by and I got hooked up again with Doris, who, hearing I’d given up drugs, offered me the one-room flat in the basement of Charrington Street, while I worked as a secretary and made a pitch at becoming the ‘normal’ person Idries Shah said I had to be before I would be accepted as a student of ‘the work’. All very well, it seemed, but it was hard enough being an impossible teenager, how was I going to manage to act normal – something I’d had no experience with at all? Not since I’d been born. One thing all the comings and goings had achieved, however, was adaptability. I could put on a performance that seemed good enough to convince most people. The problem was that I had no idea what this ‘normal’ was that I was supposed to achieve. A secretary. Take shorthand, type it up, make cups of tea, look busy when there was nothing to do, be treated like a snail in the middle of a wet pathway. Doris seemed to think these were the kinds of thing Shah meant by becoming normal, and perhaps they were. ‘Carry your bags ma’am?’ he asked as we were walking to a nuclear shelter (an unused underground sewer pipe) we were going to stay in as an experiment set up by the University of Swansea. When I said thank you but I could manage by myself he said: ‘Do you think I’m a male chauvinist pig?’ I was too embarrassed to answer this by then ancient evasion. Others around me were shocked, and knowing from Doris how these conversations were supposed to work, I imagined that I was being given a chance to think through my attitude to sexual politics. I certainly don’t think Doris would have approved of my allowing the conversation to end with: ‘No, but I’m quite fit enough to carry it myself, thanks.’

This was Doris, a woman who had played whatever part was necessary to get her where (London) she wanted to be and what (writing) she wanted to do. In Salisbury, she had left two small children, a boy and a girl, with her divorced husband, and married a member of the Communist Party, an exiled German, with whom she had her youngest child, Peter. When she split up with Gottfried, she took Peter aged two and the manuscript of The Grass Is Singing on a plane and landed in London, staying with all sorts of hospitable postwar people with sometimes tragically spare rooms, who helped to look after Peter while she wrote and went to meetings. The last of these lodgings was with Joan Rodker, whose son, Ernest, about ten years older than Peter, was at St Christopher’s School. Joan was hugely energetic, running the party organisation practically single-handed and keeping Peter out of the way while Doris wrote and had affairs. ‘The trouble with Joan,’ Doris once explained to me, ‘is that she never had very much luck with men.’ Meaning that she, Doris, had. And surely, part of that analysis was that Joan was devoting herself to Peter, whom she was very fond of.

At seven or eight Peter went to St Christopher’s too, though I don’t understand how either Joan or Doris was earning enough money to pay the considerable fees. Joan worked at the BBC as a drama producer, and Doris was living on advances for her next books. I met Peter when I was 11 and had been sent to St Chris by Camden Council to get me away from my mother. He was known as Fuzzy. He’d just come back from a visit to Germany to see his father, who had had his hair cut in an erect German military crop. We never got on. We argued a lot. It was encouraged in class, but Peter had developed a pretend grown-up style which had come about from trying to keep up with all the political and literary types he was mixing with at home. They just ignored him or laughed generously, not taking him seriously. It made him as I recall pompous and self-important. When he was wrong Doris and her friends never corrected him or explained, so he would make wild pronouncements and I was not kind or thoughtful enough to leave them alone at school, where he was with his peers not indulgent socialists.

Peter is the great enigma in the story of Doris. He actually is the story of Doris, both in her youth and in her old age. It’s very hard to know how to present the two of them as the years went by, how to describe the dyad they made and which locked them together more and more grotesquely for the rest of both their lives.

You can read the next instalment of Jenny Diski's memoir here (and the first one here).

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Vol. 37 No. 14 · 16 July 2015

Jenny Diski describes her face as having become ‘cushionoid’, ‘rounder and fatter at the bottom’, as a result of the steroids she has been prescribed (LRB, 2 July). Sadly, the word has nothing to do with cushions: it’s ‘cushingoid’ as in Cushing’s syndrome.

Michael Robertson
Augsburg, Germany

Vol. 37 No. 18 · 24 September 2015

Jenny Diski’s account of the horrors of chemotherapy set my memory working (LRB, 2 July). I was diagnosed with cancer shortly after my 75th birthday. There was a big tumour in my kidney, then they found an offshoot in my left lung, and then two more in the right. But where I live, in Belgium, the surgeon was dismissive of chemotherapy. ‘We don’t like the side effects,’ he remarked. Instead, their way of dealing with cancer is to cut it out with sharp knives. So I had four serious surgical operations in the space of seven months. I couldn’t say there were no after-effects: I felt weak for some time. But muscles recover, and strength comes back. I wonder whether there is a debate in Britain about the relative merits of chemicals and surgery for removing cancers – is one side or the other causing unnecessary suffering to its patients? – or is this just a matter of idiosyncratic national preference, like the right temperature for serving beer?

Keith Richardson

Vol. 37 No. 20 · 22 October 2015

Can I reassure Keith Richardson that the relative merits of chemotherapy and surgery are always taken into account where one or the other, and sometimes both, are indicated in the treatment of cancer, both in this country and in Belgium (Letters, 24 September). Not all cancers are discrete lumps amenable to complete excision and many, such as blood disorders, are not lumps at all. Some will spread via microscopic cellular migration, which is not easily detectable, and there are others that can be reduced only by non-surgical intervention because they have invaded vital structures which surgery would damage. Certain cancers require only one clinical approach.

Nigel Ganly

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