In Gratitude

by Jenny Diski

  No, I don’t know either, it was 1974. Pied pipers were everywhere, remaking a bad world. But I knew the cast of characters. Emily, me; Gerald, Roger, my boyfriend and free-school organiser with the children from the free school. The Survivors. Just a few. But what can you do with a benighted world? Only the ones who can see will see. It’s a shame but you can’t save everyone.

  But actually, I didn’t go into the egg. I knew my Humpty Dumpty and Pied Piper too well. Their survivors seem to do nothing but play Ring-a-ring o’ Roses with garlands of flowers on their heads the livelong day. I made my play for a different kind of egg, acid, methedrine, dope, mescaline and all that, and finally got the egg out of my hair.

  Four months passed in North Wing. I fell in love with Mr Amnesiac, and the son of an Edwardian poet fell in love with me before he died of the case of whisky under his bed. We played poker, and according to Doris, who told the tale in her own way, I wore fine grey tights but no knickers (I have no memory of animosity towards knickers, but it doesn’t matter) and was sulky and annoying to the pitifully paid, hard-working nurses who couldn’t afford half of the clothes I wore on their salary. But Mr Amnesiac regained his memory and fell back in love with his wife and liked his daughter, who was older than me, and reneged on our plan to live together. He went home, I stuck around and had a fantasy about a round room in which small people lived in the spaces between the walls. Eventually I left North Wing waiting for a bed to be available at the Maudsley. After nine months Dr Krampl Taylor considered me hopeless. ‘She has a borderline personality disorder,’ it said in my notes. Nothing will improve her, she will have a terrible life and lonely death. Well, words to that effect. I was young, attractive, wild, had my own thoughts which contradicted Dr Krampl Taylor, who also wrote in a paper that women should be in the home and kitchen, while men fought with giant mammoths to keep their feeble dependants alive at least for a while. ‘You have an addictive personality,’ he told me, and prescribed injections of methedrine twice a week while being challenged by the shrink so that abreaction occurred, and in the heat of the furnace of abreaction a new passive me would rise like a dragon out of the flame. The new woman. Made of fire and ice and everything nice. Fuck off, Dr KT, I said to myself, and broke into the drugs cupboard to steal more methedrine. Got on a bus, went to the Arts Lab in Long Acre, turned around in my chair in the café and asked the bloke behind me (who happened to be the speed king of London) where I might find some injectable speed.

  There wasn’t much sleeping done for a few days, then there was a comedown as bad as the worst depression I’d ever had. I left my best friend behind in the Maudsley and found other friends. I became part of a group. I belonged where I sat with my back against the wall watching all the words fly past me like a royal parade. Sentenced to sentences. I sat back and relaxed. Well here I am at last. Comfy, with friends, not alone. Only I didn’t know anyone’s name, or who they were. But perhaps that didn’t matter either.

  That was when Doris crossed me off her Christmas list. Or thereabouts. Wild, dangerous, a woman with an active uterus that might do anything, and drugs as well. Hopeless. A terrible letdown. An experiment gone wrong. And not because I jumped out of the window, but because I had refused to take the opportunity given to me that millions of people would have given anything for. And I apologise to those millions of people in whose way I stood. If I’d known better I’d have stood at the back of the choosing room and let matters take their own course. No point in being sorry now. But I can see how irritating it must be. Sorry, people in your millions. I fucked up again. Gratitude. Not enough. Fail. So stand me on the headmaster’s table at assembly to be shown up as the derelict I was while the head looked up my skirt (which he probably didn’t, but it felt as if he did) and told the school I was the wickedest pupil ever known for biting that poor child’s ankles when she had done nothing to deserve it. I am very ashamed of that. But I had my go-fuck-yourself face on so no one guessed that the most ashamed person in the room was me. Oh, but that was another time, another school. I was about six then and my friend, who was very small and I called Mouse, secretly took my hand, when the head said no one was to speak to me for two days, and squeezed it. My fuck-you face almost fell off, and I thought I might cry, but let it be recorded that I didn’t cry. Not in any visible way at all. Horrible girl.

  PART TWO

  Chemo and Me

  Tick. The final infusion of the three twenty-one-day cycles of chemo is done. I’ve been of a mind to follow Alan Bennett’s excellent observation that he doesn’t wish to be so familiar with the treatment as to call it by its nickname. But adding the ‘therapy’ each time has become peculiarly tedious and needlessly pointed. Back when, I used to pronounce R. D. Laing’s name the way it’s spelled, as he did. But everyone asked who I meant and then corrected me, ‘Oh, you mean Lang,’ so I gave up and called him Lang with a twang like everyone else for the simpler if less self-righteous life. So chemo’s over.

  A week after the last infusion, I was scanned from head to abdomen to see what, if anything, had happened. Just once the technician said ‘brain’ instead of ‘head’ and my careful poise unravelled, though not so far that it could be seen from the safety of her glass box. Maybe that brain-frazzled moment will show up on the scan as a bright spike in the terror region of my brain. The amygdala? The little almond, like the rusks called mandelbrot with their embedded almonds which I went on my child’s scooter every Sunday to buy from Grodzinski’s in Goodge Street. Next week, I see the Onc Doc and get the result of the scan, and the go-ahead or otherwise, for a month of daily radiotherapy at Addenbrooke’s. Weekends off, just like a regular job.

  So now I’m dawdling in one of those grossly extended weeks that one endures while waiting for lovers to phone or scans to be assessed. Why don’t the lovers ring, and the doctors assess, the next day? Because: be reasonable. You’re not the only fish; not the only one with cancer. The world has its timetables and rhythms. It was precisely for weeks like this that our parents were supposed to have taught us to put aside childish notions of instant gratification for the more mature deferred sort. As we all know, come cancer scans and silent lovers, it doesn’t work. So I’m living with Schrödinger’s tumour. There it is: both smaller and bigger; spreading via the lymph nodes to the brain (or whoknowswhere) and halted in its tracks; in receipt of the good fortune (20–30 per cent) of a remission of unknown length, and the bad luck (70–80 per cent) of no remission. Until Onc Doc opens the box next week. I am interested in his opening gambit. The diagnosis came with ‘What were you expecting from this appointment?’ I imagine the opener to the scan results will be more of the ‘Which do you want first? The good news or the bad news?’ kind, because I’m beginning to get the idea that there aren’t going to be any ‘it’s this or that’ statements any longer. Superposition right up to the end, both more and less until the final opening of the final box, the upshot everyone faces, some having had more warning than others, sooner rather than later or later rather than sooner. Very few of us have an actual date even to pencil into our diaries, ‘and so,’ as Malone says, ‘grow gently old down all the unchanging days, and die one day like any other day, only shorter’.

  And what of the chemo? Some of the things everyone knows and dreads. Not all. Insane tiredness and chemo-brain, the latter not a Z-list superhero but an ugly fact of life as acuity and the capacity to hold anything in the mind for more than a moment drains away. ‘You told me that, when? You did not. I’m the person round here who remembers everything. Remember? You did not tell me.’ But when I had to ask the other day about a plot point in Law and Order, I knew it was my game that was up. Chemo-brain and tiredness like I’ve never . . . In spite of which I’ve tried to think myself into a state of meerkat alertness, to be, in this part of the memoir at least, a proper hack, close enough to the other side of treatment to report my findings on practical day-to-day living with an inoperable cancer diagnosis and the treatment for it. Answer: there is no practical day-to-day li
ving with chemo and a certain uncertain prognosis. I gather that some people have chemo and go to work every day, undaunted. I am one of the daunted. The final infusion of poison last week came with an additional two units of someone else’s blood to improve my low and unregenerated white blood cell count, and fix the anaemia that showed up in the blood tests they do so regularly. Iatrogenic disorders, but at least we know that the poison in there is killing something, the good along – it’s to be hoped – with the bad and the ugly. So I spent seven hours – usually it’s a couple of hours – attached to the cannula attached to a tube leading to bags of liquid hooked to the top of the chrome stand with a machine in its middle to regulate the drip, drip, drip.

  Chemo-brain doesn’t just dim my lights; it also has made me feel clumsy, not completely in control of my movements, as if the regular puppeteer is no longer the only one pulling the strings attached to my hands and feet. My superfast typing has many more errors, and I’m very wary of going down stairs or reaching for a glass. The main preoccupation, however, of the seven-hour infusion was knowing there was no way to avoid my drip-buddy and me going abroad for a trip to the loo. It looks easy on the telly, when the cancer patients roll their drip-stands along beside them as if they’re taking them for a stroll, one arm outstretched to enclose the upright like an arm around an old friend’s waist. It felt more problematic than that to me. Planning was required: any dancer will tell you that you should ‘walk’ through a movement in your mind, as well as stepping it out on the floor. I had to try to disregard the image of my contraption and me flat out, me hapless, the machine broken, and both of us dribbling pools of blood or escaped carboplatin (platinum, my precious toxin) from my cannula and its disconnected connecting tube. Think it through, instead: get down from the high-off-the-ground blue airplane chair; negotiate the bump at the threshold of the bathroom; manoeuvre it and me sidlingly in order to get the door shut.

  Because I knew I would have to, there was hardly a moment of the seven hours when I didn’t think about needing a pee, but I managed to restrict it in actuality to just the once. The occasions when as an adult I’ve had to give so much consideration to urinating have been few; most memorable was in the Swedish Arctic at forty degrees below freezing, failing to sleep in a tent pitched in a field containing 7,000 reindeer. I spent most of the night visualising the enormous difficulty of getting out of my sleeping bag, managing not to step on any of the four other people and one dog on my way out of the tent, struggling with the several layers of all-in-one and upper and lower clothing designed to make the peeing process a zip for men, but requiring me, without a distance-spraying organ, to expose practically all of myself to the herd of untroubled reindeer, while I murmured strong curses for their ears only, and my pee and lower body froze in the crazily cold, starry night. Eventually I just had to do it. It was neither dignified nor comfortable. But it was at least quite exciting and the sky certainly the starriest I’d ever seen. For the sixty-three days of chemo, even when not attached to a drip pole, my life has been largely made up of similarly lengthy considerations of mundane domestic and personal matters – get up, wash, dress, work, read a book, make a cup of tea, make a hot-water bottle, watch TV – and whether I can give a fuck about doing all, some or any of these things, or not-giving-a-fuck-withstanding, and going against every cell of my state of being, I should or could make the effort. The answer is, with the exception of the overwhelmingly desirable hot-water bottle, invariably no.

  I was warned in advance about the cancer-and-chemo tiredness, the aetiology in both cases still essentially a mystery to medics, but for most people unavoidable. This I knew. I’d read diaries and seen TV and movies that dealt with this most feared and undesirable intervention. There is no treatment for the tiredness, as there is for the nausea, the other notorious side-effect that overtakes you. After a bad few days with nausea in the previous cycle, for the final infusion I took home four different kinds of anti-emetic, fine-tuned to take account of my earlier reactions. I don’t even have to suffer the universal (I thought) mark of the canceree, her badge of baldness, because for some reason this kind or quantity or something of chemo had no interest in killing off my hair follicles. So I am grateful that chemo for me was not as devastating and disfiguring as it might have been; neither bald nor bescarfed, or throwing up, and thus signalling to friends and strangers which world I’m currently inhabiting, causing them in the other real world to shout across their sympathy and helplessness at me or scurry by in embarrassment. To strangers at least I’m just a regular stranger. That’s something, or it would be if I went out anywhere apart from the oncology unit.

  I listened to the Onc Doc’s warning about tiredness at the original appointment, and wondered if he could imagine the extent to which I have always been indolent and agreeably attached to my sofa or bed. ‘I have the metabolism of a sloth,’ I explained. He said: ‘This is different.’ I thought: he thinks I’m exaggerating. Everyone thinks I’m exaggerating because they can’t imagine contentedly spending a week or two – or three – not leaving the house, not once, and then finding it an insufferable intrusion to have to attend an appointment or even answer the phone. It’s not a malaise, or if it is, it’s my malaise and a condition I treasure. It’s not a phobia, it’s a choice. The Onc Doc and Onc Nurses talk about ‘fatigue’, not ‘tiredness’, as if to distinguish it in kind from feeling sleepy or lazy, just as major depression is distinct from ‘a bit mis’, or dehydrated is many steps along from thirsty or always carrying around a non-prescription bottle of water and taking a few sips from time to time. Fatigue isn’t more tired than tiredness, it’s differently tired. You can’t feel the carboplatin as it travels through your veins, but you can feel fatigue in them later, as though they were filled with sluggish liquidised metal (mercury, say, but without the ‘quick’ of quicksilver) dragging its weighty way around your body, to your arms, legs, head, fingers, torso, and to eyelids that feel so heavy they threaten to drain down into a viscous puddle at your feet, your veins imploded and sucked dry by a monstrous gravity. Anyway, very tired Fatigue.

  A regular day now might unfold with me doing some work in bed and then getting up. Showering or bathing and dressing, and then, all clean and ready for the day, the body and mind refold themselves, suddenly faced with the urgent decision whether to eat something or to get back into bed straight away, not stopping for food, to sleep for four more hours or so. With or without breakfast, the effort of getting up finishes the day off for me. I’ve tried it the other way round, getting up first, before work, but then that’s as far as I get, so no breakfast and no work, peeling off the clothes I’ve just put on and creeping back to bed, with nothing done, but mightily relieved to have been let off the exhausting business of making a decision. Logically, I should stay in bed all day and work intermittently, like snacking, as well as snacking intermittently, like snacking. But my brain and muscles turn off after a while of working, so I’d have to go back to sleep again, anyway, not dozing, no forty winks, but deeply, fast, vastly asleep. And as the Macmillan Nurse booklets (every patient’s and, it seems, every doctor’s source of information) explain, this fatigue is not alleviated by rest. You wake up just as exhausted as you were when you went to sleep. In an aside, they say that the fatigue can last between two months and two years after the chemo has finished. In a few months (or years) of days like that, a full consideration of the necessity or otherwise of having a pee counts as quite exciting enough. I’ve tried but failed to watch a full-length episode of Lovejoy, the Poet’s favourite after a day wording and teaching, but my lowered excitement threshold can’t take the plot tensions or the anguish of seeing those familiar youthful faces of now-aged English actors who you just can’t put a name to, though it’s on the tip of your tongue. That’s how fatigued I’ve been. After the blood transfusion, I’d hoped for something like Popeye’s transfiguration after downing a tin of spinach, but I was still pretty tired in the days after. I could sleep in a heartbeat, but my veins were filled w
ith something lighter than mercury, and my body was not so determined to join in with my mind’s unchanged exhaustion. It was an improvement, but by Day 6 the full weight of exhaustion – had the new blood run out? – hit me like a wrecking ball and I spent that weekend asleep for ten and more hours of daytime after eight or nine hours at night.

  Days, by the way, are my new way of telling time. They are the units of chemo, Day 1 to Day 21, after which it all starts again at Day 1. Day 6 or 7 is the lowest ebb and in each cycle, I have to start a course of antibiotics to fend off infection. I’m supposed to pick up by Day 15 or 16, my blood recovering, but I’ve never noticed it, and the need for the blood transfusion last time suggests that my body isn’t playing strictly to the prescribed rhythm. The body, we shouldn’t be surprised to learn, has a mind of its own.

  The chemo period, for all the deadness of feeling and lack of fine-tuning, threw a lasso round my life. Until the three cycles were complete, nothing else was going to happen. There was stasis in the other, non-cancer life. Not just exhaustion, but a lack of will even to investigate what was going on inside me. I feel I’ve allowed myself more ignorance about the nature and behaviour of my cancer than I’d allow myself if I had the flu. I am not a doctor, but there’s the Internet and I’m still capable of reading, if not retaining, say, a juicy paper at Academia.edu: ‘Things Fall Apart: Heidegger on the Constancy and Finality of Death’ (by Taylor Carman), so how come I’ve remained so foggy about the details and possible trajectories of my cancer? I tell myself it’s because I’m not so much in charge in cancer-world. I don’t think I’ve ever felt so not in charge. This is one of the surprises of being cancered. I don’t approve, but I don’t have the energy to roll up my sleeves and find out everything there is to be found. The exhaustion makes me incapable, but there is also some absence of will to find everything out. On the other hand, it’s also increasingly clear to me that there may be little to find out and that no one, Onc Doc, Onc Nurse, really knows very much, except in an academic way. Everything is presented to me statistically, as probabilities. I can’t find the right question to break through that, to talk about the cancer that is me and mine, what it is, how it is, how it and I are with each other. Something that pans in on the singularity of the particular cancer I’m hosting. I guess it’s because ‘they don’t know’, like they don’t know exactly how or why antidepressants work, but that they do, statistically well enough.