In Gratitude

by Jenny Diski

  After a few sessions I stopped putting my pointless smock on and just took off my top and left it on the chair about four feet from the bench. The ceremonial ripping away of the front while I was lying down with my arms over my head was more disturbing to me than crossing the room naked from the waist up. It recalled when I went to Esalen in Big Sur and spent much of the time lounging in the natural spa baths built into the rocks looking out on the Pacific Ocean, comfortably stark naked in the sun. The radiographers wore neat fitted white tops with short sleeves over their trousers, and seemed a great distance from the 1970s frolic. If the youthful technicians were embarrassed by a few seconds of my mobile, aged nakedness, but content with my twenty-minute static nakedness on the table, I decided they would have to deal with it. They may well have thought that the brief covering-up provided the patient with that assured dignity, but it was just another formality, like my date of birth and address, that made me invisible. I put the lack of human connection in the radiotherapy department down to the fact that the technicians were dealing with intricate measurements that had to be done exactly right for each person arriving one after another for short periods over a long day. I’m sure it was tiring and tedious. But I didn’t take to being no more than a date, an address and a package of flesh to be manoeuvred into the proper co-ordinates. I’d never felt like that during the chemo sessions, where the oncology nurses seemed to know that they were dealing with an individual, even if they were infusing a dozen people a day. If I sound grumpy and cross, that’s how I felt going to and leaving the twenty daily treatments.

  Perhaps, though, it was my mood that affected them. In order to get to the radiotherapy department I had to walk along the corridor that ran beside and was open to the general oncology waiting room. Everyone I know who has encountered that waiting room shakes their head at the memory of it. It’s a huge space that disappears round the corner, with row after row of chairs, almost always filled, for a hundred or more to have their blood taken, while others waited to see their doctors. It seemed as I passed day after day that everyone was in a kind of trance. All these people with cancer, and friends of the people with cancer, waiting for treatment or to find out test results, resigned and passive on the rows of chairs. It was sometimes so full that people had to stand. Occasionally someone whispered to the person next to them, but mostly everyone kept a respectful silence. There was always a queue for the reception desk at the centre where the waiting room turned the corner. Behind and to one side of most of the chairs, out of the sitters’ sight, was a large aquarium brightly lit by a bulb inside the lid. It was filled with a plastic shipwreck, and green plastic plants waved in the water thanks to a motor oxygenating it. It wasn’t until the third day, the third pass, as I walked towards the radiotherapy department, that I looked hard, and established for certain that there was nothing alive in the aquarium. No fish, no seahorses, not even a water snail. It was a water and plastic under-seascape. Which was all right because no one looked at it. The bright, fishless aquarium that no one looked at seemed to fit in with the surroundings. There was no escaping the ready-made analogies. The ship of fools on an empty sea. The polite waiting for waiting’s sake. Waiting for their turn in the anteroom of the afterlife with all eyes directed towards the electric sign that showed whose number was up.

  The fully equipped, decorated aquarium without any fish probably had contained fish but they had died. Perhaps they’d given it two or three shots replacing the dead fish with live ones, but they all died. So now the tank was kept brightly lit and perky with no chance of dead fish floating troublingly on the surface, there just for the light and colour, which, even though it was in no one’s eyeline, certainly made that corner of the waiting room brighter, and contrasted with the quiet forbearance of those who sat uncomplaining, whatever time of day I passed them. It became a matter to ponder while lying on the Elekta bench. Perhaps the aquarium had never had any fish in it. Had it been donated and it was decided the tank was quite nice as it was? Or had the accountants given the oncology department an ultimatum: lit-up seascape or fish? One or the other. No funds for both. Had the nurses put it to a vote while everyone sat and waited? Fish or seascape? I imagined one patient standing up and making a passionate plea for fish. He got a cheer. But the head nurse reminded them that a fish without a lit-up seascape would not make much of a splash. And, she added, if the powers that be say that the oxygen pump was only there to get the decorative vote, the result would be dead fish, which would be discouraging for children, or those with memories of fish they’d loved in childhood. The vote went overwhelmingly to the bright but fishless option. The patient who had made his passionate plea for a fish returned his eyes to the black-and-white number machine on the wall, which ticked each number to tell a patient their waiting was over. He looked down at the screwed-up paper in his hand and up at the number on the wall and realised that he’d missed his call. He got up to take another number. That fantasy took me as comfortably as it was possible to be through a death-ray session.

  Once or twice, to see a doctor and to have blood taken, the Poet and I took our seats, and became one with the silent mass of cancer patients and their friends or family. I often tried to go past without looking, but it was impossible. I tried chatting to the Poet as we walked along that section but even looking away, there it was, the vast oncology waiting room which confirmed my growing suspicion that practically everyone has or had or will have cancer and will end up here waiting for the number on the machine on the wall to match the one screwed up into a ball between fingers and thumb. The much smaller radiotherapy waiting room was light relief. Some people nodded greetings and chatted. After all, everyone who was there came every day. You began to recognise faces and played the new guessing game: which one has the cancer? It wasn’t always easy to tell. What was clear was the distinction between those of us who were having ‘curative’ radiotherapy and those who weren’t long for the world and were having it to help with pain management. Some of the latter arrived in beds pushed by porters, patients, all of them grey of face and still, never looking about them at their surroundings. Others, more mobile, came having been delivered by volunteer drivers and sat grimly with various wounds and scars from surgery, breathing heavily, none of them looking around at the other patients waiting. We – the less ill ones – stole glances at these patients, those on their last legs or whose legs no longer held them up. Even the most buoyant and cheery patient in the radiotherapy waiting room must have seen the mirror the bedridden held up for us.

  It’s very difficult to get away from the oppositional thinking of good and bad, in cancer as in everything else. It isn’t only the warrior metaphors: ‘She’s struggling with cancer’; ‘She lost her battle with cancer.’ All the explanations of my treatment, what it attempts to achieve and how it goes about it, describe the battle to erase the bad cells and promote the growth of good cells. Chemotherapy and radical radiotherapy (which means, I think, the maximum dose of cell-destroying beams my body can take) target the bad tumour in my lung and the affected lymph nodes (three are overactive, so far, north of the tumour). But neither the infusion of poison nor the killer rays, crude, unthinking hitmen, can tell the difference between bad cancer cells and virtuous healthy cells. So good and bad are killed off and damaged by both treatments. During recuperation periods in chemo, and for three months after the end of radiotherapy, where I am now, the good cells are given a chance to regrow, while the bad cells, it is hoped, can’t (no, I don’t know why, I may have been told once, but it didn’t stick). The result is extreme fatigue because the body uses all the energy it has to rebuild itself. In radiotherapy the beams are as fine-tuned to their targets as possible, but for all the combined expertise and techniques of the physicists, clinicians and radiographers, they are also certain to damage healthy cells next to the tumour or the lymph nodes. Fatigue (I’m currently sleeping fifteen hours a day, and more) knocks me flat so that the body can use all its resources to work on regenerating healthy cells. The
bad fairy’s spell recuperated by the good fairy’s amendment. Think Sleeping Beauty, dozing for one hundred years while briars and thorns grow dense around the castle, ensuring that only the best of the wandering suitors (princes, all) can cut their way through and plant a wake-up kiss on the slumbering princess. In the original case all the palace slept, too. What could a waking princess do when she discovered that all those devoted to her care, feeding, dressing, washing, teaching, had died long since? Enchanted princesses aren’t equipped to fend for themselves when they wake, not even with a handsome prince in tow; they need the infrastructure of the palace and its denizens to make their waking life possible. When modern princesses wake up it’s to a deliberately crippled NHS and princes who are as likely as not to have discussed the cost/benefit ratio of all that cutting back and concluded that making it through the briars just wouldn’t be efficient.

  My oesophagus, right next to a targeted lymph node, became inflamed in the last week of radiotherapy, and the ragged pain made it impossible to eat or swallow anything, especially anything with edges, for weeks. Although the pain has gone now, it’s still difficult to swallow; everything feels as if it’s stuck in my gullet, and my taste buds are playing a cruel game. Anything sweet tastes much sweeter and a lot of things, especially meat, are inedibly bitter. At Christmas the Poet and I had a lovely solitary day with work, DVDs of 1950s black-and-white B-movies, and a pheasant for lunch. But lunch turned out to be a matter of eating the insides of roast potatoes and leaving the elegant pheasant that tasted only of bitter aloes on the side of my plate. I was the cat that got the brandy butter but not the Christmas pudding.

  A few days after treatment had finished, the area on my back where the beams that entered through the front of my body made their exit started to show signs of radiation burn. The skin went deep red with flaky patches and was dotted with painful nasty scabs. I resisted a Job-like soliloquy requesting that the Lord explain what I’d done to deserve this and settled instead for moping and muttering: ‘What the fuck else is going to happen?’ I spoke to the Onc Doc on the phone, rather than the Lord Almighty (consultants are the Lord’s representatives on earth, anyway), who told me that these days burns were very rare and that I must have a particularly sensitive metabolism. Hydrocortisone cream would soothe it and, he hoped, prevent it from getting infected. I basked in the light of my remarkable metabolism for a bare nano-second before realising the message was basically: ‘Tough luck. Get over it.’ Not all that different from the Lord’s reply to Job. ‘Then the Lord answered Job out of the whirlwind, and said: Who is this that darkeneth counsel by words without knowledge? Gird up now thy loins like a man; for I will demand of thee, and answer thou me. Where wast thou when I laid the foundations of the earth? Declare, if thou hast understanding.’ The hydrocortisone ointment has stopped any infection and calmed it, but it still hurts and itches, one and the other, hard to say which at any point, though the area of damage has grown smaller and paler. Another permanent side-effect is the worsening of the mild scarring of my lungs, which was already there, but now makes getting up the steep stairs of a Cambridge terraced house like a pilgrimage to Santiago. These side-effects, including the fatigue, which seems to be getting worse (as well as others I’ve been lucky enough not to be so sensitive to, and have avoided), can continue for weeks after the end of treatment, and, as a Macmillan brochure – one for every cancer anxiety that arises and my first stop before Googling – tells it, can stick around for months or even years. Short of dying from them (people do), the unwanted toxic results of treatment are considered worthwhile badnesses, a trade-off for the greater good of destroying the rapidly reproducing cancer cells and upping the chance of living X or Y months longer. A month after treatment ended, I am more tired for longer than I was (if I allowed my eyes to close, I’d be fast asleep over my MacBook Air in a trice), and I curse anyone knocking on the door for causing me to go down and then back up the stairs. Still, my burned back is healing. I have no idea what all this has to do with clubbing seals, but they keep popping their heads up, blinking dolorous eyes at me.

  So treatment is over and there is nothing much to do in my cancer-world except wait. Sometime in February or March, I’ll have a scan and see what all the poison juice and darts have effected. It’s like peeping over the edge of the world while remembering you’ve left your spectacles on the kitchen table. Or more accurately, like eating custard and ice cream while watching endless hours of Inspector Morse in the hope that your chemo-brain will have wiped at least one episode from your memory bank.

  After waiting that long week for the results of my post-chemo scan, the answer to the hovering question about the effect it had on the tumour in my lung and the affected lymph nodes was much the same as most eagerly awaited answers to important questions. Inconclusive. As I’m learning to expect, nothing very decisive has resulted from the treatment. The tumour has shrunk a little, but, Onc Doc said swiftly, it was small to start with. The lymph nodes too have decreased a little in size. There was neither excitement nor disappointment in his manner. It may be that he has the same air of studied neutrality in his everyday life, when eating a delicious meal or going over the top on a rollercoaster. Or, more likely, it is for work purposes alone, in order to prevent overexcitement or crashing disappointment in patients with unrealistically high hopes or fears. I imagine that his ‘but the tumour was small to start with’ was intended to prevent disappointment at the seeming slightness of its reduction: a small reduction in a small tumour is not to be sneezed at. It seems I am to think that the cancer that can be seen hasn’t got worse, indeed it has improved, and if I were the right sort of character, I could take heart from that. To me, being the sort of character I am, it means I’ve got cancer (‘So what took you so long to arrive?’), and I won’t not have cancer, but as the Doc said at our first appointment, a certain amount of time can be added to my life by the treatment (two to three years instead of perhaps fourteen months) before the symptoms begin and the dying process starts. I smiled and said, ‘That’s good’ in a way that I hoped showed I hadn’t got any unrealistic hopes up, and that I was grateful for his, the nurses’ and the radiographers’ efforts. The team. And, of course, I am grateful. I try to feel grateful.

  As far as I understand it, the main problem is with the spreading of the cancer via my lymph nodes – this is what happens most commonly with lung cancer – to brain, to bone, who knows where? When I asked, the Onc Doc said that they hadn’t seen any new cancer sites, but they couldn’t know if there were cancers too small yet for the scan to pick up. ‘We can only see what we can see with the instruments we’ve got.’ I assume that the cancer spreading minutely through my body, like microscopic pig-iron in diminutive goods trains, is the reason, even with treatment, that my life expectancy is still only a fairly abbreviated two to three years. It’s a travelling cancer sending its cells here and there, so that only when they have taken root and grown can they be seen, by which time, I imagine, new invisible seeds will have been planted elsewhere. Etcetera. Still, if Onc Doc’s super cool is not just professional and he maintains his chill when hurtling down Kingda Ka, the world’s highest rollercoaster, then I might be wrong and I should rejoice at least somewhat in the diminishment of the visible cancer cells. Anyway (I’m working hard on attitude here), it must be better than the tumour staying as it was or getting worse. So, as planned, the radiotherapy has begun. First the measurements and then the daily dose. Each treatment, twenty minutes of zapping. A month of treatments, Monday to Friday with weekends off, throughout November. (Here comes Melville: ‘Whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses . . . ’)

  There is a sense of things going to plan, but no magic. There’s nothing to be done except wait while the medics keep everything as contained as possible with radiation, and see whether, three months after the end of radiotherapy, the tumour has reduced, and, more important, if the cancer has spread and grown visible.
There was no new mention of that original two-to-three-year prognosis if I had treatment. I didn’t ask, because I was fairly sure from his manner and what he didn’t say, that the prognosis hadn’t improved, even if it hadn’t got worse. In other words, I will continue to live with uncertainty and my inability to do anything about it, the condition I’ve been trying to wriggle away from all my life.

  It’s absurd to complain about the uncertainty of life expectancy – we’re all just a breath away from the end of our lives – but it’s especially absurd from someone in their late sixties. For almost a year before the diagnosis, I’d been plagued by thoughts of the possible not-so-far-in-the-future depletions of body and mind of one of us, me or the Poet. The future played out, in my mind, with each of us having innumerable strokes, serial heart attacks or one of the other less decisive but nonetheless disabling illnesses of old age. Turn and turnabout I’d have in my mind one of us debilitated or dead, then the other. The urgent question was: which would I prefer, to be the carer or the sufferer? The dead or the survivor? How long before one or other of us could no longer live in our two-storeyed house with its steep stairs? When might it be necessary for one of us to be looked after by professionals in a care home? We’ve lived together more or less for sixteen years. Sixteen years ago, the future still seemed a long time ahead, even if to our young selves back in our thirties, either of us in our fifties and now sixties would have seemed as old as we could imagine without picturing mobility aids and incontinence pads. Getting myself to imagine us as our young selves might imagine us was enough of a jolt to make the mind accept the present not-at-all-terrible reality of time and the body.

  But within a moment of accepting the reality, I returned to its consequences, which is to say the deteriorated future of our ageing bodies and minds. The fact was that the depredations of old age were no longer so far ahead that they could be dismissed as ‘sometime in the future’. The fear, as my late fifties turned into my early sixties, grew to become a fear of certainty, rather than uncertainty. I wouldn’t say I preferred the certainty, but I knew at least where I was. Then to have the diagnosis of cancer dropped into my model of the future, to be told that with an effort I might live for another two or three years brought back the uncertainty, so that both conditions, fact and speculation, each at their most unpleasant, now existed side by side, as equals. Can I learn to live with certain uncertainty, or uncertain certainty? I know that so many other people live with exactly that, from illness or poverty or war, but that thought doesn’t help. I’m no better at tolerating unresolvable uncertainty than I was when I was fifteen and going to live with a perfect stranger while receiving letters from my former chums, inmates of the Lady Chichester Hospital, cheering my good fortune and wondering how I was getting on in my new life.