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 living 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 with 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.
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 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. 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.
I can’t remember a time when I didn’t provoke myself with impossible thoughts. To begin with I wouldn’t have known which were impossible and which not. But, curled up in a favourite dark place (I’ve always longed to be behind those deep-red velvet curtains where Jane Eyre sits on the window seat, leafing through Bewick’s History of British Birds), or lying awake playing mind games in bed, you find out quite quickly that the imagination comes to an end in a deeply unsatisfactory answer to the question being put. Even so, I continued to try and tease out meaning for the words and the facts about life I discovered as I grew older and read more. The daily and nightly probing began around the age of six or seven, always ending at a wall or a miasmic fog in my brain. Looking back, I’m sure that it was tied up with my readings of Alice’s Adventures in Wonderland but especially Through the Looking-Glass – which easily brought dizzying thoughts to mind. What if the rabbit hole never ended? How to deal with the White Queen’s ‘Jam tomorrow’ which never comes today? And of course, the practice of believing six impossible things before breakfast. Which, if it did nothing else, at least told me that impossible things were there to be thought about.
Most things became easier the more I did them, but my mental investigation of the creeping idea of infinity never got any further. Yet I couldn’t stop poking my metaphorical tongue at the metaphorical loose tooth, rocking it back and forth until the pain went beyond interesting and pleasurable. I’d devote every ounce of my being to the task of understanding the endlessness of infinity, as if one great push (birthing spasms, the fanciful Disney lemmings’ forward rush over the cliff to oblivion) would crack the problem open and I would find perfect understanding in the pieces that lay at my feet. I worried that the endlessness of infinity must come to a stop somewhere, because it hurt my brain to try to imagine that it didn’t. Later, more grown-up in years though not in the things that worried me, I learned that the universe wasn’t infinite. Somehow. Then where was the edge of the universe? But that meant another universe, another edge, more and more, and there I was, back to infinity and dizzying brain ache. I simply couldn’t fathom, and for some reason thought I needed to, the parameters of the unending. I was using the wrong language, it turned out. Maths was invented to grapple with concepts that metaphor made murky. But I couldn’t think in that vital language. Just wasn’t my thing. So clinging on to the figurative to save my life, I vaguely grasped that the end of the infinite might be where death started. That required more probing. At first, when some knowledge of death’s ubiquity came to me, the main concern was the catastrophe of my parents’ death, hotly followed by adventurous orphan fantasies (Tick-tock, Cap’n Hook, here comes an awfully big adventure with gnashing teeth), and a narrative which developed but never ended because I fell asleep.
Both infinity and death were beyond me. They defeated me, and although I came to know that everyone was subject to death, it was some time before the penny dropped that I, too, would eventually be part of the seething crowd of everyone who dies (‘I had not thought death had undone so many’). Melodramatic accidents were story material, but an ordinary death at the end of my life was an absurd proposition, and so remote as to be hardly worth getting a sweat up for. Even so, I’d lie awake trying to imagine being dead just as I tried to imagine stepping off the end of infinity.
It was easy enough imagining myself being dead, settled peacefully in my coffin, everyone sobbing into handkerchiefs, no unseemly snot in evidence, for their poor beloved dead child, but soon enough I realised that I’d got in my own way. Death is the end of you. Of me. There is no being dead. The body, the coffin, the tears were for those who were still alive. Without a notion of a holiday-camp heaven, something I seem never to have had, I was left with a new and special kind of endlessness, like infinity, but without you. By which I meant me. You and then not you. Me and then not . . . impossible sentence to finish. The prospect of extinction comes at last with an admission of the horror of being unable to imagine or be part of it, because it is beyond the you that has the capacity to think about it. I learned the meaning of being lost for words; I came up against the horizon of language.
So it’s not as if I haven’t thought about death, yours, theirs, my death, all the time, now and back then. Like Gabriel in Joyce’s ‘The Dead’, I’ve imagined ‘the vast hosts of the dead’. And in my childish way, I understood Gabriel’s vertigo: ‘His soul swooned slowly as he heard the snow falling faintly through the universe and faintly falling, like the descent of their last end, upon all the living and the dead.’ But until my cancer diagnosis and the cautiously calculated prognosis last summer, death in all the forms it had come to me, or as I had worried it, was a description of the unreal. There has been grief in my life, though very little compared to many. A great grief, the loss of one of my oldest friends, my first husband and my daughter’s father, only came on me in 2011. A loss to me, whether we saw much of each other or not, of his being in the world. Your inevitable imagined death isn’t properly a grief until you look at it from the point of view of those who will remain alive without your being in the world. When the Poet expresses his sadness and forthcoming grief, it hits me as if I were him and suffering his loss of me. It is both a lesson in empathy and an indulgence in narcissism. I will, by then, not be suffering anything. Will not be. The pain and sadness that engulfs me at his distress is projection, a mirroring of another soul. Perhaps it is an exercise in the reality of love. How else can I conceive of my own death even though I now know it will happen sooner rather than later? I did make one request to the Poet from beyond the grave: ‘I don’t much care about the funeral arrangements, but if I’m going to be buried, I want to be tucked up in a winter-tog-rated duvet. It doesn’t have to be exquisite winter-snow-goose down, though that would be nice. But I need a duvet. You know how much I hate being cold, and especially cold and damp.’ The Poet put his foot down. He hates waste and whimsical dishonesty. ‘You won’t be there to feel the cold and damp,’ he said. Tears came, just up to but not spilling over the lower lid. Mine. His. Sometimes it’s hard to tell. ‘I know I won’t. But now I want the promise of a duvet.’ ‘Double or single?’
Nevertheless, the excruciating terror of the fact that I am in the early stages of dying comes regularly and settles on my solar plexus directly beneath my ribcage (called my coeliac ganglia, from which the sympathetic nerves in charge of the fight or flight response radiate, or called anxiety, or, if you prefer, my third chakra). There the terror squats, rat or raptor, its razor-sharp claws digging into that interior organ where all dreaded things come to scrape and gnaw and live in me. Still, so far, unabsorbed. Undigested. Dropping in on me, like the weighted lead of grief, when not expected. Give me medication, however unnatural, at least to round off the knife-edged talons scraping away at me. Give me some distance, some respite from this kind of pain as you do from the pain of cancer treatment, or cancer itself, or a broken wrist. It’s not a lesson I need to learn. I’ve known and recognised the underlying psychological causes, some of them anyway, enough of them. I own up to them and I really don’t need this solar grip to remind me of my fear. Death feels your collar when you’re going about your business almost as if nothing has happened, and when you are idling, wondering what there is to think about. Whoa, hang on, missus, the world has come to an end.
Negativity is my inclination, whether biochemical and/or environmentally produced. Looking at death as negativity, of everything gone, an absence, I get the image, from Psycho, of Hitchcock’s (or Saul Bass’s) shot of swirling bloody water draining into the plughole and transmuting into a teardrop in the corner of Janet Leigh’s open, dead eye. Her face crushed against the floor tiles, she can neither gaze into the abyss nor have the abyss stare back, because even the abyss is non-existent in the non-existence that used to be you. The abyss is merely a penultimate state of the ultimate.
I have ‘non-small cell lung adenocarcinoma’. I’m mystified by the term. By the negative term for its opposite. Non-small. A robust sort of cancer, then? Why not ‘large’ or ‘quite big’? It reminds me of Poe writing in ‘The Pit and the Pendulum’ that his protagonist ‘unclosed my eyes’. Was ‘opened’ on the very tip of Poe’s tongue, but he couldn’t quite make the reach? I sense a pantomime audience howling ‘Opened! For god’s sake, Ed. Opened!’ Or did Poe choose this peculiar usage to unsettle the reader by throwing a net of the uncanny over the horrible moment of vision? But that can’t be the reason for the medical term ‘non-small’. Is it simply large-celled, but courtesy/custom/delicacy requires the euphemism? What need? Undead has quite another meaning. Where does this linguistic black hole get us? Non-alive, non-pretty, non-excellent. And up pops non-existent, just when I don’t need it. Hey nonny-no. In my third novel, Like Mother, the main character was called Nony for short – a baby girl born without a brain (although the narrator of the book). Non-existent. Nonny no.
One of the things I was very clear about immediately after my diagnosis as a canceree was not wanting to be dropped into the ‘victim’ arena. Not worst of all, that awful designation, which chases us whatever we are doing or misdoing, being ‘on a journey’. When I began this memoir I anticipated with dread, and hoped to bypass, the crushing moment when I would first be described as ‘being on a journey’. Might have been King Cnut, for all the good that did. Quite a few people ignored me, as is their right, and jumped in anyway, launching my boat, giving me a pat on the back to get me going, firing the starter gun, swimming alongside me for a while, hoping I would stay the course, wishing me strength for the road I travelled, all of them knowing but not actually saying that journeys do end, that’s the point of them, and we all knew where this journey ended. Right at the start I was in a funk about the avalanche of clichés that hung over my head in a bucket that we would all, me included, tip up to cover me as if with pig’s blood at my first and last prom. (How do you do? The name’s Cnut, Carrie Cnut.) Clichés exist because they once worked brilliantly. They helped to universalise the intractably private, to keep a distance between what people wanted to say and couldn’t. They must have been alive then. Now they are either the deadening end of meaning or party favours to be played with. For some writers they are a springboard, perfectly placed to be rejuvenated, to renew or cut through their general use as thought-concealers. If people reach so readily for a cliché, it’s because there’s something they can’t say, or even think. When Beckett or Nabokov twists a commonplace into an oh-so-considered sentence, it too does the work of the uncanny. The too well known as unknown. I fucking love clichés.
Still, there is also the matter of just being accurate, taking the straightest route to the meaning you want. I am not on a journey, I repeat, testily. But as each of my treatments ended I found it grew harder to escape the platitude. The good cell/bad cell dichotomy of the body hosting cancer is difficult enough to avoid. The phoney spiritual analogy has become inevitable, everything that happens for more than a split second is a ‘journey’. It’s not our fault that time works for us in the way it does, or that the linear accelerates our lives. We ‘journey’ as we read books, watch films, look back at our past, imagine the future, even mindfully try to live in the always and only present moment while thoughts of what was, and is still to come, crowd our minds. Otherwise there’s silence, and that’s an option. Though not much of one for our narrating species. Can we even get dressed without a before and after, a beginning and end? Starting with your socks instead of your knickers doesn’t alter the fact of the matter: undone to done. And then the reverse. One, two, buckle my shoe. It’s inescapable. From one state to another, how can the journey not come to mind? That’s the price of living in time. Why should I mind so much? Why should I mind so much now? Because journeys end?
What’s strange is that the multitude of journeys we are all deemed to be on have become coupled with optimism, no matter that for most of human history a journey was always begun with the knowledge that it might not end well or in the right place. Ships were wrecked, brigands stopped and stripped pilgrims in their tracks, disease ended any thought of destination or arrival. The first time I experienced a journey with no destination was when the bailiffs came and took our stuff away, promising to return to evict my mother and me from the flat in Paramount Court. My mother, rising to the occasion, took my hand and dragged me along the streets, shouting at me that now we were destitute, and were going to live ‘under the arches’ in Charing Cross with all the other tramps and beggars. I knew some of the tramps who had a regular route between the Rowton House workhouses and I hailed them as they arrived in Tottenham Court Road, where I played. But we weren’t heading directly to Charing Cross to claim our space: we were wandering. It was raining. I remember the dark pavement, watching my feet walking (my head down), the splashing of the falling rain, and for the first time being out and walking but without a destination. Before that if we went out we were always going somewhere, if only to a shop and then to return home. This was quite new and terrifying, we were just walking. Homeless, with nowhere to go. Of course, eventually, after my mother’s rage and fear had been walked off, we returned to our flat, still in possession until someone came and sorted my mother out with social security and a bedsitting-room in Mornington Crescent. Walking in the rain still makes me feel bereft, even though it’s only an echo of a fear that didn’t happen.
But these days, being ‘on a journey’ assumes that you will reach your destination to a hero’s welcome, a happy ending, an apotheosis, something having been learned or earned, and approved. The slightest of efforts by an individual or a group is crowned with the completion of an inner journey that the actual journey (often not a journey) has nothing to do with. People wear T-shirts printed with their favourite charity’s slogan: ‘Let’s kill cancer’, ‘Bring a homeless dog happiness and love.’ They run in circles, or cycle to the ends of the earth, Swim the Channel, the Atlantic Ocean, several lengths of the local pool, climb Mount Everest, a Munro, a plastic wall, spell more words correctly than anyone else, and in November write a novel or grow a moustache. The money you ‘earn’ will provide goods for the needy, a drip in the stream of scientific research funds, and the effort you make will buff up your character. A journey seems always to be for the better. It ends in insight or excellence or positive change. But can Rolf Harris, formerly beloved entertainer, now convicted sex offender, be said to be on a journey as he slides down the fame snake to a cell in Stafford Jail? Still, if he makes a statement on his release, it’s likely he will tell us that he has been on a journey and learned lessons, perhaps even got himself straight with God, in readiness for the final journey. Has anyone willingly grasped the hellish consequences of their actions since Don Giovanni’s fevered acceptance of his murdered victim’s invitation to dine with him in hell?
Who lacerates my soul? Who torments my body?
What torment, oh me, what agony! What a Hell! What a terror!
Much as I hate it, the journey – that deeply unsatisfactory, often deceitful metaphor – keeps popping into my head. Like my thoughts about infinity, my thoughts about my cancer are always champing at the bit, dragging me towards a starting line. From ignorance of my condition to diagnosis; the initiation into chemotherapy and then the radiotherapy; from the slap of being told that it’s incurable to a sort of acceptance of the upcoming end. From not knowing, to ‘knowing’, to ‘really’ knowing; from being alive and making the human assumption that I will be around ‘in the future’, to coming to terms with a more imminent death. And then death itself. And there is no and. Maybe it’s just too difficult to find a way to avoid giving the experience a beginning and an end. Except that it’s never over, cancer, until the fat lady pops her clogs. No one is ever cured of cancer, except technically. Even if I were to pass the magic five-year survival post, or go into remission, the possibility of a return of the cancer cells will always be there. Binary oppositions turn spatial. Whichever way I refuse to call it a journey, the pattern of a voyage is etched into every event. How can I avoid the idea that I am at the least on a journey from Big C to Big D (as everyone is, although the letter of the first stage may be different)? Why do I want so much to avoid the notion of a pilgrim progressing? What if I try it the other way? I’m standing still while the tests, diagnosis and treatments pass by me as if on a belt. This is not outlandish, the supermarket checkout, or The Generation Game, where the prizes roll along in front of you on a conveyor belt and you get to keep those you remember – a teas-maid! From first inklings, it is all outside me, moving at its own pace, while I observe attentively. Or like the journey I made by Amtrak around the US, watching the swiftly or sluggishly passing scenery through the window as I sat dreamily on a train. No, trains have destinations. Perhaps I’d better think of myself as sitting idly at a station, hanging out, while diagnosis, treatment and so on arrive, stop and depart. Me, I’m not going anywhere. Just watching the passing show. But it’s such an effort, wriggling away from the platitude while the journey taps her feet in the wings knowing where she belongs.
The end of the journey doesn’t come until you either die cancer-free of something else, or die of the effects of a regeneration of the cancer cells. Good and bad; from here to eternity, and from eternity to here. But I have been not here before, remember that. By which I mean that I have been here; I have already been at the destination towards which I’m now heading. I have already been absent, non-existent. Beckett and Nabokov know:
I too shall cease and be as when I was not yet, only all over instead of in store.
The cradle rocks above an abyss, and common sense tells us that our existence is but a brief crack of light between two eternities of darkness.
Speak, Memory
This thought, this fact, is a genuine comfort, the only one that works, to calm me down when the panic comes. It brings me real solace in the terror of the infinite desert. It doesn’t resolve the question (though, as an atheist I don’t really have one), but it offers me familiarity with ‘The undiscovered country from whose bourn/No traveller returns’. I’ve been there. I’ve done that. And it soothes. When I find myself trembling at the prospect of extinction, I can steady myself by thinking of the abyss that I have already experienced. Sometimes I can almost take a kindly, unhurried interest in my own extinction. The not-being that I have already been. I whisper it to myself, like a mantra, or a lullaby.
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 nortriptyline 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 overemotional 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? The oldest person I knew, 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 in 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.
If it were a race, the first man home – except for Iain Banks who won the trophy by a mile – would be Oliver Sacks (announced 19 February – died 30 August), with Henning Mankell (announced 17 January – died 5 October) a close second. Lisa Jardine won a race of her own, staying shtum publicly, her death a surprise except to the few who knew. So Clive James (announced May 2011 – ?) and Diski (announced 11 September 2014 – ?) still battle it out for third place. In the other kind of race, last man standing, James and Diski would be meandering towards first and second place, Sacks and Mankell having already taken third and last place. These are the writers who within the last year or so (nearly five years in James’s case) have publicly announced their forthcoming death from cancer, of one sort or another.
It’s a delicate balance, this publicising of one’s cancer. The public’s interest is fixated on when each of them will die. For some reason cancer is the disease of choice for public tongue-wagging. It has that something, that je ne sais quoi, not just death, but how long known beforehand: how will she die, should she choose to try for a longer life by accepting treatment, or settle for palliative care which at its best is a comfortable death without pain. What Francis Bacon called ‘a fair and easy passage’, which I used as the title of a TV play written and broadcast long ago. An announcement of forthcoming but more or less certain death by a public figure opens our eyes to death, the one that is coming to us all. I don’t know why but cancer is the definitive illness. People run in circles and slide down towers to show their solidarity and ‘earn’ money for research. But there is an edge. James wisely jokes about it, but ‘they’ don’t really seem to want a cure or long-term relief for cancer sufferers (unless it’s a family member or a close friend): it seems to spoil the purity of the tragic. No one so far as I know has written a column or agreed to an interview to announce that they have flu, or arthritis in their left knee, and how the medication is going. It’s not that flu or arthritis couldn’t be made interesting – it all depends on the writer – but in the cancer cases, it isn’t the quality of the writing that’s being judged, but the murky details of the illness that will remove each candidate from the board, and if it doesn’t the audience will feel cheated.
‘I bet you’ve found faith now,’ believers wrote to Christopher Hitchens when he announced he had terminal cancer. He insisted he hadn’t. I’d never been envious of those who believe in an afterlife until now. It would be so much cosier than dissolution. She’s gone to the next room. Nope, can’t manage it. She’s gone to dust and rubble. Gone nowhere. No where to go to. No she to go to it. Much easier to be convinced you will be met in Elysian Fields by a thousand virgins, or drink from fountains of Manhattans. I can’t even get close to what they call faith, though I quite see Pascal had a point; and so did Wittgenstein (though quite wrong globally) when he said: ‘Go on, believe! It does no harm.’ I don’t and won’t, and there it is.
Doubtless there are writers or public figures who have recently been diagnosed with cancer and have chosen not to mention it. Quite likely, among those of us who’ve written the ‘I’ve got cancer and I’m going to die, watch this space’ piece are some who are grateful for a subject that will indeed last them a lifetime – provided the lifetime is relatively short. But already Clive James has had to apologise for not yet being dead and explain that doctors have produced a medication that can keep his kind of leukaemia under control. He seems to feel that his readers are wondering if the whole thing was maybe a hoax to get him more attention. He did say in August 2015 that he was living on borrowed time, though he could understand the impatient foot-tapping of his readers. It’s obviously lost him the ‘who dies first’ race, but in the ‘last man standing’ race he has all to play for. ‘Which writer lived the longest and wrote the most columns and/or books after announcing their forthcoming death?’ I offer this as a question to University Challenge or a ‘What comes fourth?’ puzzle on Only Connect. Jesting as hard as he could, James said: ‘I am waiting for the next technological advance which I hope will enable me to live for ever.’
I am also alive, having announced my lung cancer (with a side attraction of pulmonary fibrosis: two fatal diseases – I don’t do things by halves) in September 2014 in the London Review of Books. And I too have been knocking back pills that Nice has licensed only for specialist use. Or I was. It took four weeks to build up to the full dose, which was three pills three times a day with meals. The aim, as with Clive James’s medication, is to keep things on an even keel. No cure is expected, just a slowing down of the deadly events going on inside me. My cancer is sitting where it was, but the fibrosis has been having a private party since the course of radiotherapy livened it up no end. (My fibrosis doc was consulted by my Onc Doc as to whether I should have steroids to prevent the deleterious effect of radiotherapy on fibrosis. He said he had no worries about that.) So, as of my last scan my cancer hasn’t gone away but is keeping quiet in its corner of my left lung, while the fibrosis situation is an unknown until I have a scan at the end of November, but is much worse than when I first wrote about it. How many lung cancers equal a rapidly inflamed fibrosis of the lung? I stopped taking the pills after a month or so because they made me sick, nauseous and sleepy. The Papworth doctor said that was OK: there was another pill I could try, but after that ‘There will be nothing else we can do for you.’ My pills might keep me alive for a year, the consultant said, with a doubtful side-to-side movement of his head.
Unfortunately, this three-meals-a-day thing is not a habit I’ve acquired in my time. There is a wall of misunderstanding between the Poet and me.
‘I can’t eat lunch, I’m not hungry.’
‘You don’t have to be hungry, just eat enough lunch to take the three pills with.’
I’m stupefied at the thought that it’s possible to eat when you aren’t hungry (though there are apparently people who can), just as the Poet is stupefied at the notion that you have to be hungry in order to eat. I snack and, if the Poet didn’t cook, wouldn’t eat what anyone would call a ‘meal’ for days on end. The first time the ‘You must’/‘I can’t’ debate happened the winner was, of course, me. I agreed to a small bowl of rice with sweetcorn and peas. Who couldn’t manage that? I managed about a dessertspoonful, taking the pills as directed. Within twenty minutes I was vomiting the whole mess into the kitchen sink – couldn’t make it upstairs, not enough breath. There is nothing I dislike more than being sick, though I’ve recently discovered that a panic attack that involves being unable to take in any air runs a very close second. I have no more to say about it. Except that I did show the Poet I wasn’t just being faint-hearted. ‘Exactly,’ he said, ‘it’s psychological. You were sick because you wanted to show me that you couldn’t eat if you weren’t hungry.’ This debate – is throwing up a physical or a psychological response to three pills and a small amount of food? – went on for a while without resolution. Though if the Poet had the slightest inkling of the extent of my dislike of vomiting – you could call it a phobia – he would never have suggested it was voluntary in any way. My stomach had to be well-lined with food, so that the extremely potent pills could be digested and not rejected by my body, designed as it is to keep poison out of my system. So now, waiting for the next and last pill, we’re in a bit of a quandary.
Do I want to live another year or so, or do I want to throw up, feel ill and eat when I haven’t the slightest appetite? That is a new alternative. I have to digest it before I can begin to answer it. A decline caused by fibrosis or lung cancer is very unpleasant. But throwing up that night, and the prospect of stronger and nastier medication, left me thinking about the balance. Worth another few months? Worth it for whom? How miserable will these extra months of life be? What the docs call quality of life measured in qualia. Versus, I suppose, no life at all. I had believed that Francis Bacon’s ‘fair and easy passage’ was a real possibility. But I no longer trust the hospice key-worker’s assurance that the dying process can be made painless. There was an unpleasant incident recently when I was told I could have a week’s respite (for me and the Poet) at the local hospice, and ended up leaving ten minutes after I arrived – they had no record of my request (granted twice: the week before and the day before) for a single room. A bed was available in a four-bed room, but a need for privacy and the degree of my depression made that impossible. I wanted a private place to cry where no one would be upset or ask me to stop. I was polite, I hope, but very disappointed. Later in the evening a doctor from the hospice called and told me that they ‘don’t provide respite care’ and couldn’t possibly guarantee that there would be a room for me when the time came for dying and palliative care. I had thought that both things were precisely the point of the hospice movement. I was shaken and distressed. The doctor later phoned my GP (not me) to say that she thought she might have upset me by being too definite in what she’d said. Well, we all have our bad days. But who the bad days affect matters too.
People offer me things to live for. (Another TV quiz show?) ‘But what about the grandchildren? They’re worth living for, aren’t they? And family and friends?’ But finding what is good about life makes their loss all the more miserable, even if you know there will be no you to miss anything. In this long meantime, dying sooner rather than later can be upsetting. Additionally, how much do I want to be dependent on others for my everyday life or, indeed, for finding a reason to stay alive a little while longer? Missing a few months of feeling awful, being dead, versus not missing those months of feeling awful. Dead, at least theoretically, is the less painful of the two options, assuming that dead equals not being at all. Whatever terror there is lies in the present fear of dying, not so much of death. The stoics tell me that I’ve been ‘dead’ before, prior to my birth, and that was no hardship, was it? Back to Beckett, I think. So that’s how I am at the moment of writing this. But of course it’s more complicated than that, more complicated than is allowed by the linear business of writing one word, one sentence, one paragraph after another with the intention of being coherent.
I have a feeling that if I describe my daily life, ‘the reader’ will react with sympathy for the blank, sedentary existence my condition causes. The thing of it is, though, that my daily life is (with obvious exceptions) very close to my idea of a perfect existence. The day usually begins with the Poet and me having tea in bed. I also have porridge or Weetabix (or did before I revolted over taking the awful pill). Every third day my fentanyl pain patch has to be changed. Not cancer pain but long years of chronic pain in my neck. Then we generally moan about the news, our dreams, the awfulness of now compared to then, the awfulness of then compared to now. An hour or so of this and the Poet gets up, washes, spruces himself with one of the strange, expensive perfumes he has on his bathroom shelf. Not that he’s a narcissist; well, he is a narcissist, but he’s also, I think, chasing the scent that is his spirit smell. He has about a dozen that are close, but none of them so far is quite it. His totemic smell. So further investigations and purchases are intermittently required. Knize Ten and Géranium by Dominique Ropion for Frédéric Malle rate very highly, but there’s probably a scent out there somewhere that is more essentially him. This is much the same attitude as I have to clothes. I look now at a handful of catalogues or I look online, but when I got around, in shops, just sometimes there was a garment that had been patiently hanging on its hanger waiting for me to find it. It’s a mystical thing and also expensive.
When he’s finished with the shower, the shaving, the unguents, he gets dressed. So far so uninteresting. At this point, he writes on a whiteboard on the back of the door the events and times of the present day. For the last few months, I have lost all sense of where we are in the week. Every day for me now is usually Monday, or sometimes Sunday, occasionally Friday. You know that certainty one has about time and its larger chunks? Well, I don’t have it any more. Since the treatment started, I have to check (and often recheck) the day at least and sometimes the month. Still, not a really big deal, though unsteadying when I thought I had that cracked around the age of six or seven. While the Poet eats his breakfast in the kitchen – no porridge for him, but homemade granola, lightly home-stewed berries and plain yoghurt (shop bought, I’m glad to say) – I begin my day, which involves straightening the bed and getting my laptop on my lap. The Poet goes off to college or the library and my day’s work starts here, between an hour and three hours usually, either on these memoirs or the monthly article I write for a Swedish paper (in English, to be translated into Swedish. Strange). Work finishes when it finishes, with me tired out, physically exhausted, or I discover that I have closed the lid of the laptop and, without thinking, declared that’s that. The Macmillan book of cancer treatment says it can be as long as two years before the exhaustion goes, and that doesn’t take account of my original pulmonary fibrosis. And then the big decision of the day: do I put away the laptop and sleep, or do I have a shower and get up? It makes no difference except that it feels silly to shower, clean my teeth and dress, and then take everything except a T-shirt off and get back into bed to sleep for between one and three hours. As differences go, it’s vanishingly small. Either way I end up back in bed, exhausted. More if I’ve washed and dressed, and much more so than before my cancer treatment started. Of course, there’s the wash and dress first option, then get undressed and get into bed to work (but actually having to sleep off the tiredness of having got up in the first place). So many options, so few options. And so many ways of operating them.
Eventually, after teaching, or poking around in the University Library, or writing references (when do the poems get written?), the Poet returns, for lunch or supper which again I have to eat, against my better judgement, in order to take my pills. Then I shower, or wash, if I haven’t already, and dive in slo-mo into a djellaba thing or baggy pants (not baggy enough since the steroid weight-gain catastrophe). I read, we watch some TV and chat, and then, around ten, I go to bed, having taken my handful of antidepressant pills, which serve me better as sleeping pills. End of my eventfully uneventful day.
Tomorrow is, or so the Poet insists when it comes, another day, but I usually say ‘Sunday’ or ‘Friday’ in answer to his question or my own testing. My two-year-old grandson, when asked a question he can’t or doesn’t want to answer, says after a moment: ‘Ella’. Which, I think, serves for the ‘Fuck off’ that I’ve been forbidden by his mother to say in front of him. I might adopt this ploy, and each instalment of this memoir/cancer diary will be filled with the word ‘Ella’, from top to bottom of each page. That’s a pleasing notion. Restful. Dear keyboard please repeat copied word – ‘Ella’ – to end of memoir. Cf.:
Have written more than a hundred pages and not got anywhere yet. My calendar is getting confused . . . Don’t think I can go on. Heart, head – everything. Lolita, Lolita, Lolita, Lolita, Lolita, Lolita, Lolita, Lolita, Lolita. Repeat till the page is full, printer.
My calendar is frighteningly full, to me. It no longer involves the arrival of couriers delivering my pills or the district nurses taking blood to see if the pills are damaging my liver; the senior psychiatric nurse who has brought a fold-up wheelchair in case I’m taken with the idea of a wheel round the Fitzwilliam or the Botanic Garden. The geriatric psychiatric consultant comes every two or three weeks. On her last visit, she decided there wasn’t much point in changing the pills around, adding this or upping that, because my depression is ‘well-founded’. This distinction is new to me. It presumably replaces the now disgraced endogenous/exogenous types, abolished by the latest Diagnostic and Statistical Manual of Mental Disorders because, I suppose, they found a couple of descriptors they like better. ‘Well-founded’ and . . . actually, I don’t know what the new word is for ‘endogenous’: ‘She’s just like that,’ perhaps, or ‘idiopathic’, which is also the description of my kind of fibrosis, which might have been caused by working in asbestos-lined factories or spending quality time with certain birds, but wasn’t. It means ‘don’t know how that got there’. Another use for ‘Ella’. Why have you got pulmonary fibrosis? Ella. Do you want to be wheeled round the Fitzwilliam? Ella. Meaning I’d like to look at a couple of pictures I especially like, but don’t want to be wheelchaired. Maybe I’ll Google the recent divisions of depression later on, between naps. ‘Well-founded’ has a double response from me. On the one hand it tells me that I’ve a perfectly good reason to be depressed (dying sooner rather than later from two incurable diseases and haunted by the memory of my former GP saying, in a torment of pity and tactlessness: ‘Oh Jenny, they’re both such terrible ways to die’). I presume, if I weren’t depressed by that, I would be diagnosed as being in pathological denial or psychotic over-optimism, but no one has ever suggested that I suffer from either of those. Sometimes other members of the Cambridge health team turn up: occupational therapists who have organised grab rails for nasty spots where I might fall and break something more than my wrist; outreach workers from the local hospital or hospice who have also given me a course of six foot massages. Very nice, but I don’t know what I’ve done to deserve them. I even have my very own friend. Sourced from the Poet’s many pals (who I like but usually don’t go out with him to visit or ‘dine’), my new press-ganged friend pops around once a week or so and we gossip. That’s very nice. I enjoy it. Then there’s my daughter Chloe and her frighteningly large family – two small children and partner. Vast by my miniaturist standards. One child good. More than one, tempting fate. But also very nice. I get more breathless but less bothered by it. I get out of the house just once a week when the Poet drives me to the top of our road, to have my hair washed by my splendid young hairdressers. They are sweet and kind and seem to have substituted ‘ah bless’ with ‘definitely’. ‘My hair is a real mess.’ ‘Definitely.’
So having given up on the vomit-making pill, there is one other: ‘There’s nothing else we can do for you.’ Doc language for ‘You’ve failed us and you’ll just have to die, which is not our speciality, so goodbye.’ Or as my grandson would put it, ‘Ella’. My breathing has got worse and I can’t get to the car without waving an electric hand-held fan in my face and swigging on liquid morphine. A pain in my left side has suddenly ratcheted up times ten. I’m a bit of a wreck. Actually, a super-sized wreck. I presume that the three stone I put on within two weeks of starting steroids make me all the more breathless and less able to pick myself up when I fall. I’d never thought about it before but the weight you are is the weight you carry. Literally. I suppose all this is what most people experience. It’s either dying suddenly in a car accident, or having a helicopter fall on you, or one of your many organs that manage your many other organs going out of kilter and spinning the whole system into a whirlwind heading deathward. I’m perfectly sure that there are quiet deaths that creep up on you gently at a decently old age, or thanks to skilful palliative care, and that I must hope for that sort of ending.