by Jenny Diski
I think, all they can do with me and my cancer is to follow the cancer’s lead. The scan will show if the tumour has shrunk or stayed still, it will show where it has travelled to, ‘except’, Onc Doc explains, ‘where it’s too small for us to see’. This crucial exception means waiting for it to grow (get worse) to know where and how far it has gone, when it will also have moved on to be invisibly small somewhere else. The Red Queen explains it in Looking-Glass world: ‘Now here, you see, it takes all the running you can do, to keep in the same place.’ Looking-Glass world is more stressful in this respect than Wonderland, my preferred state of being, where participants in the Caucus-race start to run when they like and leave off when they like and ‘everybody has won, and all must have prizes’. In moments of crisis the Alice books have always offered me the common sense of my situation. They are whispering in my ear incessantly in my cancer life.
The treatment seems to be not so very different from what it was decades ago. A plug-ugly poison that kills off cancer cells faster than it kills off other cells. They think. Then checking to see if it has done anything useful. Maybe it has, maybe it hasn’t. Everyone is waiting to see what is going to happen in order to know what is going to happen. The cancer’s in charge and leading them all a merry dance. Perhaps that’s why I’ve so little taste for investigation. There’s an awful lot of uncertainty for patients and doctors in this cancer business. And uncertainty is what I am least good at. I’ve always been prepared to use extreme measures, find drastic solutions, to put an end to uncertainty in my life. (We are back at my failed training in deferred gratification.) As far as I can see this cancer thing has left me without any measures to use or solutions to find. My sense of being a patient, with all its unwelcome connotations, is inescapable. I might refuse treatment, to which, already, Onc Doc has nodded and said that, yes, that is one path open to me which he would respect. So dumb refusal, too, is incorporated into this world. There is no way to be an impatient, or a mispatient, or even an unruly patient. Cancer-world is so structured that one has to proceed as if one were a grown-up, with all its unwelcome connotations.
What has most surprised me is that as soon as I arrived at the oncology day ward for the final infusion, I found myself anxious, distressed even, that there would be no more visits to the ward. I worried that ‘my’ designated nurse, L, would no longer be available to be called, as she insists, with ‘any little problem, no matter how small’. The kindness of nurses is remarkable. The mystery is not that some are said to be heartless, to have had their fill of sick, moaning patients and claptrap bureaucracy, but that so few are like that. Your anonymity to them – you’re not their pal or their sister – makes their patience and friendliness all the more astonishing and truly valuable if you are sick or frightened. So, hampered as I am at rebellion, I’ve now discovered myself to be a little attached to Nurse L’s unfailing availability and good humour. In fact I was already, in advance, missing the whole thing: the trips to the ward itself; the reception, and G, the always smiling, carefully dressed receptionist; Schindler’s lift, the world’s slowest elevator, with life-saving equipment on the wall in case it failed to get you there in time; the ghastly brown autumnal prints on the corridor walls; and even, in a distant way, the other patients. We hardly spoke to one another, but only nodded our heads, because people in various stages of cancer treatment aren’t a group anyone wants to be a part of. My former mother-in-law went to the Bristol centre for alternative cancer therapy and in between juicing fields-worth of carrots, complained until her own death about the letters she regularly received from spouses, informing her that one of their group had died. She said it wasn’t encouraging.
The oncology day ward exists solely for people who are anxious and sick, and their frightened relatives, and is staffed by people trained to deal with those conditions. You might think, I did think, it would be a relief to shake the carpet static from my shoes. Yet, on my last day, I discovered that there was something about the entire, dreaded, much mythologised and allegorised cancer ward and its inhabitants, perhaps the pathos, that attaches you to it, however delicate or elastic the connecting fibre. It took me a few minutes to recognise what I was feeling. Over a couple of months of, as I thought, carefully observed treatment, I’d already become mildly institutionalised. Even while I sat there being infused, I felt the loss of the unlovely place and the nurses who, however kind they might be, you rationally hoped you wouldn’t be seeing again soon. So much for my cold eye on life, on death. I have the feeling of being sent away from a place of safety. Left outside. Peter Pan – Peter Panic: not just the awfully big adventure, also the tap-tap-tapping on the window to be let back in. And I’m further along the programme, a step nearer the end. Where are the place and people I can turn to now – the ‘designated’ nurse I can call my own? Will there be a person there for me if and when I start the radiation therapy, or will I just go to the room where the machine is housed (its technicians sit in another room to avoid the rays) and be zapped day by day for a month, then wait for another scan, another assessment from the Onc Doc, without having someone on the end of a telephone for ‘any little problem, no matter how small’? What am I, ten years old? At best, I think, at the moment.
That institutionalisation and the inner seethings of loss, I remember well enough from leaving schools both as a pupil and as a teacher, and my stays, long ago, in psychiatric units; the tug, the claim, that such places and the people in them have on your emotions, the falling away of the safety net and the fearful feeling of privation when your time as part of a system runs out. In Hove, during my first hospitalisation at fifteen, in the small unit where they kept a kindly eye on me, both staff and patients, I’d felt such resistance and fear the day I left with my mother to go and live with Doris. I had three or four particular friends, all strikingly different from one another and from me, but closely woven together as inmates. They expressed real pleasure at my ‘fairy-tale ending’, no resentment that it wasn’t them being taken away to some glamorous London life and being wanted, sight unseen, by somebody. Anyway, one of them said, ‘If it can happen to you it can happen to us,’ so with the generosity of inmates, they allowed me to represent possibility for them. Leaving them was a wrench. Leaving them behind filled me with a sense of unfairness, which, not much later, when I was reading accounts of the Holocaust, I recognised as a minor form of survivor guilt.
They wrote to me in London and gave me the gossip, which was normal for life in the Lady Chichester, but hilarious, wilder and more poignant than most everyday goings-on. Pam, after sitting in a cold bath to shrink her Levi’s in the approved way, had a panic attack, and had to be cut out of her saturated skintight jeans; Sally hadn’t left her bed for a week and Dr Watt was threatening her with the one-way ticket to Haywards Heath, the big asylum that everyone knew no one returned from; Stuart had done a drawing of a sporran in art therapy, claiming his Scottish origins, he said, but his psychiatrist had shaken his head and looked intently at him. ‘A sporran, you say, a sporran? And what is behind a sporran?’ Stuart, who was famously excruciated at the thought of anything physical, said, ‘A kilt,’ but his shrink wasn’t having it. ‘And what is behind the kilt, Stuart?’ Stuart finally fessed up to owning a penis and had to be put on stronger tranquillisers for a few days. This last story was told in great confidence to Margaret, who said that she didn’t think the confidentiality applied to me as I was no longer part of daily life at the Lady C. Everyone sent their love and, although none of them was a reader or had heard of her, they were eager to know how I, the wannabe writer who had escaped the bin, was getting on in the house of the famous novelist.
The treatment’s over and done with. First from August to October, the three cycles of chemotherapy, then I graduated from the poison infusions to the death rays, with daily radiotherapy. When I look back from my current spot in the land of hiatus, the entire process makes me think of clubbing baby seals, although the seals I’m familiar with aren’t adorable chubby babies,
but glossy, black, athletic adults leaping for fish at feeding time in London Zoo when I was small, and gigantic elephant seals lounging on the shore in an Antarctic bay, paying not the slightest attention to me as I picked my way through the spaces they leave between them. Vast blubber sacks, lolling, shapeless with fat, their truncated trunks flaccid, concealing lipstick-red mouths and throats that appear when they open wide to yawn. No, not them: baby seals, small, helpless, newborn, cute, white ones with big watery eyes. This probably isn’t the right attitude to cancer treatment. I’m feeling oppressed.
I grew grumpy, at best, during my daily encounters with the machine I learned was called an Elekta Linear Accelerator, and those who attended it. The radiographers were all young, mostly in their twenties or early thirties. Two of them were amiable, but I only saw them three times; the rest were more interested in getting my body to conform to the co-ordinates set at the first planning visit than in noticing there was a person attached to the flesh they pushed and pulled into alignment. During the planning visit, small marks were tattooed into my skin to indicate the exact position I had to be in on the machine’s bench for the beams to hit the same spot every time. Precision was critical, and the radiographers were professionally focused on their target. I didn’t doubt their ability to get me into position and to run the programme. But other things about the radiotherapy – such as my experience of it – seemed less skilfully thought-through. I became irritated and fixated on the spotted green smock they gave me (‘That’s yours to keep until the end of the treatment’). It was two separate pieces of cotton held together at the shoulders and sides by velcro. ‘You can put this on in the cubicle in the waiting area,’ they told me. I did. Then as soon as I was lying down on the machine’s bench, one of the radiographers ripped the velcro patches on the shoulders apart and pulled the front down to reveal my naked upper torso. The smock kept me modestly covered for approximately twenty seconds between entering the radiotherapy room and lying down on the bench. It was to ensure decorum, I supposed. A leaflet about the treatment ended with an assurance that maintaining my dignity was important to the team. Even if it helps patients with breast cancer who aren’t inclined to reveal their body, by the time they are on the bench, being naked is necessary. Perhaps it is more for the team’s protection, so that they don’t have to see the patient walk topless from the doorway to the machine. My modesty; their embarrassment? There was nothing about the situation that suggested the slightest likelihood of impropriety.
Either way, the green smock was a gesture rather than a solution. My dignity was left at the door of the treatment room each day, not because my breasts were revealed, but because as soon as I entered I became a loose component, a part the machine lacked, that had to be slotted into place to enable it to perform its function.
One of the two or three radiographers usually said hello when I walked in, but not always. They were already busy setting the machine up. I climbed on to the hard, narrow bench and lay down in the right sort of position, my legs elevated by a couple of cushions to prevent too much pressure on my coccyx, my arms above my head and my hands gripping a bar to keep me from moving them. Then, having pulled the smock down to my waist, two radiographers stood, one on either side of me, and called out numbers to each other over my naked torso, as they pushed and pressed a bit of me here, another bit there, not moving me, but nudging my inexact boundaries into co-ordinated perfection. The room was quite cool and usually their hands felt icy against my skin. No one thought to warm them before touching me. Once I jumped they were so cold. The radiographer said: ‘Don’t move.’ ‘Your hands are cold,’ I said. ‘Yes, but keep still.’ Then, having fitted me into place and completed the puzzle set by the machine and my flesh, they called out to tell me as they went that they were leaving the room.
I was alone and had been made ready for the Elekta Linear Accelerator to perform its danse macabre around me. (For a week or so, before I Googled it, I naturally imagined it was an Electra Linear Accelerator, and wondered how the machine and its purpose made someone think of the grief-stricken, vengeful daughter of Agamemnon. It seemed no more apt than the baby seals.) Two massive arms were pulled out from the huge silver wheel set into the wall behind me, a third was already positioned above me. This one was circular with a mirrored surface in which I could see myself and the green line it projected on to me running vertically a couple of inches to the left of centre, marked by the indelible tattoo. It winked a green light as a small lens or portal opened and closed. The other arms were different. One ended in a large plain rectangle the size of a small coffee table, marked with black 90-degree angles at the corners of an otherwise invisible square. Apart from that it was quite blank, hovering over me, a slab, and like the rest of the machine, made of the same dull putty-grey plastic that computers used to be made of before they burst into colour (perhaps there will be a generation that remembers the putty-grey computer age being superseded by colour, as mine does the 1950s turning to the 1960s, or the door opening from a black-and-white Kansas to the brilliant colours of Oz). The third arm ended in a kind of thick crescent shape, like a massive herb chopper, or perhaps Poe’s pendulum, though it was fixed to the movement of its arm and couldn’t swing. The three cumbersome arms remained stationary over me, at my side and under me, then rotated clockwise or sometimes anticlockwise, until they came to rest with a different arm directly above me, while I lay perfectly still on the bench.
At the start of each treatment while the radiographers were setting me and it up, leaving me to my own thoughts, I wondered how to describe the machine. I never found a solution. Even looking at pictures of it online I’ve failed to make sense of its fangledness. It was a clumsy thing of parts, working in unison, but never summing up to make a whole. It wasn’t designed to look like what it did, or for its use to be understood with just one look. It lived precisely where bland intersects with banality. The designer on the Terminator movies would have wept to see it. There was no external clue to whatever each part did, though I guessed the mirrored arm beamed the rays at me. If that was so, what did the other, blank arms do? The three arms moved around me, stopping and starting, humming sometimes, remaining still and silent at others, emitting a variety of clicks and whirrs, and suddenly reversing their circular movement around my body and under the bench as if the machine had taken a wrong turn. No one told me what was happening, and before the technicians went into their safety room it didn’t seem possible to interrupt their measuring minds to ask what, exactly, it was doing as the arms moved or didn’t. One small victory was asking them, as they left the room, to turn the bright ceiling lights off that were hard on my eyes. They did, but I had to ask them every time to do it. I gathered some part of Elekta scanned my insides, while others moved into position to shoot beams into my lung and lymph nodes, moving upwards towards my neck.
Then it did what was hard to determine. Sometimes it peeped for three or four minutes, and I supposed it was a warning that it was accelerating rays into me, but not always with a particular part in a particular position. I couldn’t decipher any pattern or repetition in its movements. It stopped sometimes, as if pausing for a rest, for five minutes or more: was that when it was beaming me? Twice it stopped for longer than that, though I had no way of telling the time, and I was eventually told over the intercom that something had gone wrong with the computer and they’d have to start the whole rigmarole from scratch. I rather hoped the computer kept the glitch in-house rather than aiming the wrong beams at the wrong place in me, but I had to make do with the flat tone of their voices to allay that anxiety, as you look for signs of fear in flight attendants when the plane begins to wobble. Usually, it took twenty to twenty-five minutes to complete its staccato dance. The indescribable machine was overwhelming in its grey, looming blankness, its movement purposeful but meaningless to me, substantial enough to evoke a feeling of claustrophobia even though it didn’t contain me like the tube of a CT or fMRI scanner. I had irrational moments when I feared one of th
e arms would collapse and fall on me, or that the bench I was lying on would suddenly rise up and crush me between itself and the mirrored arm. It was quite cold in the room and by the end of each session my arms were numb from having kept motionless for so long. I made another small improvement by wearing long arm-warmers, but that didn’t improve the cramp. The first time I wore them, the radiographers laughed: was I the only one who felt the cold? But the one time I got on the bench forgetting the arm-warmers, one of the technicians reminded me to put them on. It was the nearest we got to a human encounter. Apart from the two more friendly radiographers, hardly anyone spoke to me except to ask my date of birth and address each session, to ensure I was the right person for the treatment. I suspect that rote Q&A tended to diminish my personhood in this machine-driven department. The daily repetition added to the sense that I was there, correctly numbered, a part that needed to be slotted in for the machine to be complete.