Was that when it was beaming me?

Jenny Diski

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 throughout November (weekends off). All done: the killing of cells in my body, the ‘good’ along with the ‘bad’, all of them just being, reproducing and doing whatever else they do. 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 onto 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, to mould my flesh to fit the prescribed parameters. They 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 onto 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 anti-clockwise, 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 20 to 25 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 the 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.

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. I recalled that I was of the generation of all ages that had gone 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 20-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, mentioned on notices around the hospital, 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 people. Some were waiting for infusions, or to have their blood taken, 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 underseascape. 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 15 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 nanosecond 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. The answer will be an average of months, more or fewer depending on the dimensions of the tumour and the activity of the lymph nodes, as well as any new areas that are lit up. 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.

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