Who is that? It is Tracey. Where am I? I don’t know this room. I am warm. I am drunk. Who is that at the end of the bed? It is my mum. Why is she here? These pillows are soft. They must be the softest pillows. I am probably in America. Am I an angel? No, I am a bird. I am circling above. I am in a tree house at the top of the tallest tree in the widest forest. Everything is below me. There is my bedcover. The bed is like the countryside – fields and cars and little people. I am looking through a camera obscura, like at the beginning of A Matter of Life and Death. Why is Tracey so small? An image at the end of a telescope held up against my eye the wrong way. I cannot speak. I must make my eyes wide and full of questions.
I had lines running into the main artery in my neck, and a little clothes-peg on my finger that checked my pulse. A ventilator tube was plumbed into my mouth and throat. My upper body was wired up with electrocardiogram suction pads. I had a catheter in my cock, and lines and cannulae in my wrists for saline. Sunk deep into my chest was a food pipe. The last moment I remembered was an image of someone bringing me an operation consent form late at night. It seemed like weeks ago. I couldn’t speak. All I can remember is drifting. Tracey spoke.
‘Your bowel was bad,’ she said.
I am circling above. I am part of a painting. Tracey and Mum are in the painting too. We are characters fanning out from the bed.
‘You’ve had a lot of surgery, but you are getting better.’
I must be in America. We must be on tour. I am abroad. I must have collapsed abroad. No, I must be in the hospital for Tropical Medicine with the man with the beard and the ‘Save Africa’ badge, who said I had worms. I’m drifting again. Nobody loves me, everybody hates me, they think I’ve got worms …
‘You are on Intensive Care.’
I am on Intensive Care? Intensive Care. I told them so. How glamorous. But I feel no pain. Something has been done. I am special and understood now.
Tracey had been given a little board with all the letters of the alphabet on it. ‘You must tell us what you want. You must point to the letters,’ she said.
I spelled out ‘E-n-g-l-a-n-d?’
Tracey nodded and said yes.
I felt suddenly intensely lonely. I spelled ‘S-a-d’, and Tracey started crying a little bit. Then I spelled ‘S-h-e-i-l-a?’
‘Sheila’s coming,’ she said.
We were all quiet for a moment. Like a painting. My mum started speaking.
What is that my mum is saying? I cannot hear her properly. There is music playing somewhere. My ear hurts.
I spelled out ‘I w-a-n-t t-o h-e-a-r …’
Tracey jumped in before I could finish. ‘You want to hear us talk more? OK, we’ll talk some more.’
I shook my head. It was a tiny movement. I tried again. My finger traced the letters. ‘I w-a-n-t t-o h-e-a-r m-o-r-e …’
Tracey wouldn’t let me finish again. ‘You want to hear more …’ (Her eyes flashed round the room.) ‘… more music,’ she said. ‘He wants to hear more music. Turn the music up, someone.’
No, no, no …
I shook my head again. I spelled out slowly. ‘I w-a-n-t t-o h-e-a-r m-o-r-e t-h-r-o-u-g-h m-y l-e-f-t e-a-r.’ My ear was folded into the pillow, muffling the conversation. Fogged up with drugs, I seemed unable to send a message to my neck to move my head enough to free it.
Tracey and my mum roared with laughter. I could hear relief and the release of tension. Tracey laughed again and rolled my head sideways a little way before resting it back on the pillow. I could hear the music more clearly now. It was Bonnie Raitt. Why was it playing? I knew that song. It was making me cry. I was spinning away again, thousands of feet above. Tracey took my hand. We were both crying.
Sheila came. She knelt by the bed and took my hand with her head on one side. Her eyes were full. She said nothing.
Even if your relative seems not to react to you, it is likely that they will be able to hear, and will be aware of their environment. It may seem strange to talk to someone who is not able to answer you, but this can help to comfort your relative, as can holding their hand. You will find lots of equipment. This enables staff to monitor the person closely, to give drugs and fluid and to help with breathing. The nurse will explain the equipment to you. There will be one nurse who will be with your relative at all times. Never feel that you are in the way. (ITU Relatives Leaflet)
Heavily sedated, I had been asleep for four whole days. Prof. Wastell had cut me open as planned, but had seen something so bad at first he’d simply stapled me back together again and sent me up to ITU (Intensive Care) to pause for thought. My small bowel had virtually rotted away inside me, and probably had been doing so for several days. The whole area, crippled by blood-vessel damage, had been severely infected with gangrene and peritonitis, poisoning my blood and threatening fatal perforation. Inflammation and the instability of the dead and matted tissue had made immediate access and repair almost impossible. Instead Dr Mackworth-Young, a consultant rheumatologist, and his immunology team had been called in straightaway to try to calm the area down with drugs overnight, to enable surgery to continue the following day.
It seems my immune system had been flipping out in some kind of massive overreaction. The eosinophilic warning signals had been right. Huge numbers of white-cell antibodies from my immune system’s defences had been stimulated into attack by something unknown – an invading allergen or parasite possibly – but instead of their being regulated and then flushed out as usual, my bloodstream had been teeming with the harmful wrestling complexes they were forming, and they had settled in the tiny vessels and connective tissue surrounding my small intestine. As they’d raged on, blood vessels had become chronically irritated and inflamed and then consequently destroyed – a process known as vasculitis – and three-quarters of the small intestine (innocently caught up in the battle) had simply died from interrupted blood supply. It was as if a massive tourniquet had been tied around it.
My immune system, now aggressively triggered, had seemed unable to shut itself down and, more alarmingly, had begun to produce additional antibodies that had started to no longer recognize my own tissue. They had been destroying it, as if it too were the invading enemy. I had in effect become autoimmune. I was attacking myself.
Immediately following the exploratory operation, Dr Mackworth-Young had prescribed intravenous steroids to try to reduce the inflammation, antibiotics to fight the infection and a serious drug called cyclophosphamide that blocks cell growth in an attempt to temporarily stamp out my frenzied white-cell and antibody production and effectively knock out my immune-system activity. Hard-wired into a life-support system, my chances of surviving that first night on ITU had been put at 25 per cent.
The next day I’d been given a day’s rest. I’d been showing signs of stress. Another operation straightaway had been deemed too risky. Although I’d been technically stable, if critical, the biggest threat at that stage had been a spontaneous unstoppable perforation of the weakened bowel wall that would have fatally flooded my bloodstream with septic fluid created by the rotting tissue.
The following morning I’d been taken straight up to theatre for a long operation. The Prof had removed large sections of the dead bowel and sewn the ends together as the drugs worked to stabilize the infection and damp down the rampaging immune system. Back on ITU, however, I’d shown no signs of improvement. My pulse and temperature had stayed high, signalling a continued struggle with the infected tissue. Tracey had stayed day and night. So had my mum. Killing time. Waiting. Reading. Watching the monitors above my bed. Walking slowly by the river. Shopping pointlessly. Tracey says at night my face was like puffy candle wax, bloated by drugs and creased by the ventilator straps.
It had been clear that more was going to have to be removed. The following day the surgical team had gone in again and in another laborious operation had taken out another three or four feet of the necrotic bowel. At last I began to show signs of relief. Even as I was being wheeled back to the unit, Sheila, who had collected me, says she registered my fever and pulse falling in the corridor. The surgeons had, however, reluctantly now removed more than ten feet of my small bowel. What this would mean for my future, no one would predict.
The drugs had played their part too. Infection and inflammation had been contained, and the rioting immune system had at least been temporarily quelled. And so, with the remaining bowel stabilized and a cease-fire holding, the anaesthetists had reduced my sedatives and I’d opened my eyes on a Saturday afternoon on to a room I’d never seen before with no memory of any of this.
The afternoon they brought me round, after Tracey and my mum had sat with me with the letter-board for a while, I had an epidural – a spinal injection – fixed into my lower back to effectively paralyse me from the waist down and reduce pain following so much abdominal surgery. The grogginess had lifted. Before the epidural was put in, the nurses had been asking how I was feeling, did I feel pain, and at first I had felt nothing; but later I started to notice heat. My abdomen felt hot, and then hot and sore and pounding, and within an hour I started to feel shocked and frightened. I had a morphine pump. Grasping it in the hand like a computer-game joystick, I could give myself metered doses of painkillers. I pressed it all the time, but the system would only allow one pulse every ten or fifteen minutes. I remember I constantly expected to raise the bedclothes and see blood, with the dressing soaked through. My mind filled with images of gunshot wounds and blast victims and cauterized landscapes of still-smoking bomb craters. The anaesthetist came with the epidural. Nurses rolled me on to my side. I wanted to die. Tracey was there. The mattress was too spongy. The anaesthetist couldn’t find the right spot. I felt his fingers pushing against my vertebrae. A nurse’s hand was firmly on my shoulder.
I cried out, ‘Is it done? Is it done yet?’ I didn’t know what was being done. I didn’t know anything, flinching from the gentlest touch. I wanted to be in open summer fields, a sky above me, Tracey running in front, out of real time.
‘Lie still. Lie still,’ the anaesthetist was saying.
The mattress cover was like waterproofed tent material against my face. I was staring into the corner of the room. Later I remember rolling back and expecting to feel something sharp or something snapping off, but instead just lying there waiting for my legs to go numb.
Tracey left around nine. I couldn’t sleep. I just stared and stared at the clock on the wall. I felt unique. I felt bored. Drugs were searing round my body. I felt as if I could throw back the sheets and walk out of there. I asked Mike, one of the nurses, to give me something to help me sleep. He said he wasn’t allowed to. An hour later he came back. I felt like Gulliver under all the drips and feeds. I didn’t dare move. I thought if I moved my stomach would split open. I said I had to sleep. He had a tiny needle on a grey cardboard tray in his hand. He leant over and emptied its contents into the arterial line running into my neck, saying, ‘This should help.’ I was about to speak again, and then seemed to look up to find three hours had passed.
They took me back to theatre to remove the last of the patches of bad bowel on the Monday morning. I was distressed and scared like a child who can’t get on a plane. They put me under quickly, even before I left the unit.
I am five. I am asleep, half-asleep, in my room, a big room at the top of the house but divided in two by a stud-wall partition with glass windows along the top. The wall takes drawing-pins very well. I have two film posters from my mum on my wall – one with Clint Eastwood and Lee Van Cleef as cowboys. Lee Van Cleef is a strange name. My half-sister sleeps on the other side of the wall, but she is away. I am half-asleep but I can sense light flickering, butterfly light. I can smell burning – a burning like the paper twizzled tapers my grandma makes for the wood fire when we go away sometimes in the summer holidays. I can hear a pit-a-pat, a crackling pit-a-pat. It must be raining on the flat roof above. I cannot wake up fully. I dream on. The light still flickers. Yellowy flickering light. The smell is stronger. The rain must be really coming down now. I think I can hear it crackling in the huge copper beech in the garden outside.
I open my eyes. I don’t understand. The wall at the end of my bed is on fire. My poster for The Good, the Bad and the Ugly is full of flames. Faces are burning. The dry paper curls and spits. Smoke rolls up the wall and then strangely down again, like the plume of an exhaled cigarette. I sit upright, as if awakened by an electric charge. I can see the door. There are no flames near it. Only my wall seems to be on fire. I stare at the smoke. It now seems to run in a channel where the wall meets the ceiling, like the trail from the stack of a travelling steam train. It comes towards me, unfurling and rolling like a wave. I feel myself close my mouth. I am gripped for what seems like an age. The rolling tube of smoke. The blast of flame and paper at the foot of my bed. My room is filled with shadows and light. I jump out from the sheets and I am rushing from the room with my hands covering my head and down the stairs and I crash my fists against my parents’ bedroom door. ‘Fire! Fire!’ I am shouting.
My dad unlocks the door.
‘Fire! Come now!’
He races up the stairs ahead of me and pulls a blanket off the bed and whacks the wall like a carpet-beater until the flames have gone and the room just smells hot and acrid. He picks up my child’s night-light candle. The wax is all gone from it. The dish has burnt dry and melted the desktop. The corner of the desktop is all bubbly, like boiling treacle. Scorch marks streak the wall immediately above it, and higher up, where The Good, the Bad and the Ugly once were, only a blackened patch is left. Flecks of ash and paper are on my bed. I look out of the window and see a dark, dry, still night and the big outline of the silent tree.
Coming round from the anaesthetic some hours later I thought I could see two nurses moving around above me. There was a lot of activity. The reconnecting of lines and tubes, the smacking of latex gloves. It was bright. I heard voices. I was back on ITU, but it felt like somewhere else – like I was just below the water-line in a swimming-pool, unable to fully break the surface, figures above me distorted, faces rippling. The light was dazzling. White light like flaring magnesium. I had the tube from the respirator deep in my throat. It was unbearable. I felt like I was gagging continuously. I felt miles away from everyone, in a tunnel on the edge of waking. I thought I was several feet down into the mattress, and I wanted to reach out to attract attention like a drowner. I was trying to speak, trying to get them to understand that I must have the tube removed, but all one of them was saying was, ‘Calm down. Lie still.’
I thought I was going to crap myself. Tracey came in. I grabbed at the alphabet board in her hand and spelled out ‘S-h-i-t’.
‘You feel shit? Yes, I’m sure,’ she said.
No, no, no. I shook my head violently and pointed down the bed.
‘You want to shit?’ she said.
I nodded vigorously.
She asked for a bedpan.
It was slipped under my arse, but of course nothing happened. It was just a response to the anaesthetic wearing off. I pointed to the tube in my mouth.
Take it out. Take it out.
Tracey tried to soothe me. ‘You have to show them that you can breathe on your own before they’ll take it out.’
I was seething with indignation. I started breathing as fast as I could. In out. In out. I could hear the air in the ventilator like a snorkel. I had to regain control. I felt I was the victim of an overreaction. I needed no help. The nurses watched me for a while longer and then sat me up a little way. The elastic strap was loosened and then one of them eased the respirator free, my mouth wide, the length of plastic tubing knocking against my teeth as it came out. My throat felt sandpapered. I wanted to retch. I gulped in air and blinked in the bright light, Tracey holding my hand.
Angela, one of the nurses, took me outside the following day. She just came on duty and asked if I fancied a spin in a wheelchair. It seemed ridiculous. How could it possibly be allowed, a day after a week of major surgery? But I was so bored and strung out on painkillers, and my arse ached and my feet were all jumpy. It took fifteen minutes to get me disconnected from all my drips. Temporary stops and bungs were found. I was like a bathroom being capped off by a plumber. Sitting me upright, swivelling my legs round out of bed and into the chair took another five minutes. By the time I was ready I really wanted to get back into bed, but it was too late.
Tracey came too. We went out of the door. I took the spinal injection with me on my lap – a big syringe mounted into a carry-case, battery-operated, the fluid released from the chamber on a slow timer, running from the needle down a narrow tube into my back. I held it like a grenade. I could hear myself talking me through it –
But I’ve only just had my last operation. Does the Prof know? These corridors smell of cooked fat. I can smell oranges. Aren’t the floors hard? There are ridges everywhere. I can’t believe they’ve left the epidural in. I’d better not drop this box-pump. Is it feeding me painkiller now? Don’t shut the lift doors on me. That’s better. Hello, I’m on ITU. What? Outside? But I thought we would stay inside. Oh, OK then. Up and over the step. That’s it. It’s so loud. All these people on their lunch-hour. Life as normal. I don’t like this. These paving-stones. I’m hunching. I feel like spun glass. Thin, transparent, breakable. Don’t drop me, because I am powerless. I abdicate all responsibility for myself. You could tip me out and I’d just lie there. This is too far now. Can we go back? You can’t get the chair over that step anyway. Turn around. Home now.
I began to get used to the language and routines. ‘ITU’ was short for ‘Intensive Therapy Unit’ and an alternative term for what I’d always called Intensive Care. I learnt that I had two bowels – a small bowel, sometimes called the small intestine, where all the digesting is done, and a large bowel, or colon, where the waste is processed. I’d always thought ‘bowel’ was just a colloquial term like ‘guts’ and meant somewhere near your arse.
The mornings would begin with the 6.30 drug round and the arrival of the nurses on the morning shift. Intravenous drugs were fed into my body through the lines and drips in my neck, chest or arms. Sometimes the fluids would feel as cool as stream water as they flowed up my arm; other times they would sting shockingly as they irritated my thin veins. The lines in my neck and chest penetrated so deep that I felt nothing at all when they were used.
I was often bad-tempered in the early mornings from no proper sleep. Nurses would try to wash me in the bed and I’d sulk. They’d brush my teeth for me and try to put a comb through my hair. I’d dribble the toothpaste into a cardboard bowl. I didn’t see the point. Sometimes they’d wheel the TV over and turn on breakfast TV and I’d watch something profoundly irrelevant like the business news. It wouldn’t even be light outside.
Gifts and presents that you may want to bring: Most people are unable to eat or drink normally. Please ask your nurse before bringing in food and drink. Flowers and plants are not a good idea because they can grow bugs in the water which can spread infection to the patients. Silk or dried flowers are a good alternative. Personal items of toiletries are a good idea, i.e. talc, perfume, aftershave, shaving foam, razors, toothpaste, etc. Bars of soap are not a good idea as they get soggy and may also grow bugs. Liquid soap in a dispenser is a good idea. Music tapes or tapes from the family, photographs and cards are good because they help the person to keep in touch with home. (ITU Relatives Leaflet)
I wanted nothing to get in the way of my long silent hours of search and re-evaluation. I was like an enormous tasking computer, sifting through its millions of data deposit boxes, temporarily inaccessible, freeze-screened, finding, replacing, paginating memories, the hospital monitors above my head flashing like the tasking icon, a busy bee, a spinning clock. I was unable to wear anything, my arms and neck and chest strung with drugs and fluids like a limp marionette, my cock stretched by a catheter, my thighs punctured by the needles from anti-blood-clotting injections, my belly zipped up like a body-bag. I wanted no pretence at comforts. When the periods of momentary anger and searing boredom passed, I wanted to be humble. I wanted none of the trappings relatives are encouraged to bring, and days later, when I did gradually allow rewards back in, it was piece by piece – my ring, my soft slippers. Abstinence. Contemplation. Deprivation. They all seemed more appropriate.
There is not much space for the storage of personal property. While your relative is ill, they are unlikely to require many items. Hearing aids, glasses and a wristwatch or small clock are good things to have. It’s often nice for the nursing staff to have a photo of the patient before they were ill to relate to. (ITU Relatives Leaflet)
The days of sedation and surgery bothered me, and bother me still. Where did I go for four days? To theatre and back, no doubt, but how can my mind offer no clue as to how I felt, up there so often, knocked out, and then back down to rest and sleep for days on end? I have no recurrent bad dreams, or nightmares of the surgeon’s work. I endure no persistent, latent anguish or undue suffering. It is as though one day I closed my eyes and then on another I opened them again. No time passed, and the gap between the days is now neatly joined like edited film.
So does the body remember? Such invasion, such destruction and trauma – the cutting, the sewing, the bleeding – surely these must leave an imprint? Many alternative therapies and holistic approaches to medicine work from the basis of the body’s memories. It is suggested that the body never forgets an awkward birth or a badly broken bone. Tension and stress within the body can stem from such things, as the body strives to protect itself, and in turn can be translated outwardly into sorrow and distress. But when I grieve now I seem to cry only for a general sense of loss and change that encompasses as much the present and my prospects for the future as it does the past. I sometimes wish it were for something more specific, some hard fact I could focus on and exorcize – a particularly bad hour in theatre, the laborious resecting, something touch-and-go, a vital incision, the feel of dead, matted tissue. Can anaesthetic obliterate so much?
Some months later, when by invitation I attended a lecture on the rarity of my case at Charing Cross Hospital in front of seventy or eighty doctors linked by closed-circuit TV with other doctors at Westminster, I saw slides of necrotic bowel, rotten and severed. It appeared suddenly, without warning, as images thrown large on the screen in front of me. All I could think of was how it resembled grilled Cumberland sausage. I was fascinated but not involved. I was just part of the audience. It didn’t seem to have anything to do with me. It didn’t upset me. When I try to get close to those moments in theatre, all that I seem to be left with are the birds, the hummingbirds, that were painted on the ceiling of the anaesthetist’s room. They were always the last thing I saw. Birds and tropical trees against a blue sky. The black oxygen mask was cupped back and forth over my mouth, my lungs rising and falling, and then the anaesthetic was administered. Wide awake, as I was on later trips to theatre, I’d start the count to ten, convinced the dose was wrong and that I wouldn’t go under. And every time I’d go instantaneously, as though a hypnotist had clicked his fingers.
‘One, two …’
Hummingbirds, hummingbirds.
‘… three, four, fi …’
Gone.
Tracey and my mum shared a relatives room opposite the unit. My mum would come in and see me around seven, after the drug round was over. Her entrances were always measured and well timed – the buzz on the unit’s intercom; a slow, soft step across the floor in soft, flat shoes. (I got to recognize her tread, and Tracey’s too, and could distinguish them from those of nurses and doctors.) She would arrive gracefully, kiss my forehead or sometimes my feet, hand me a newspaper, and then sit on a low table by the window with the Daily Mail, all seemingly in one long, slow sweep. She would always ask me how I had slept, and I hated to answer truthfully and say ‘badly’ because that would shift the sympathy straight on to me too early in the day, when sometimes all I wanted was a sweet hello on equal terms without acknowledgement of victim and sympathizer.
Sometimes, later in the day, after a bad moment when I’d suffered pain, she would get up from her customary position at the foot of the bed, move closer, and take my hand and rub her thumb along the back of it, her palms thick and warm. Even in those moments I felt incomprehensible to her, as though even then, as her little boy again, I was a closed book, too long unread, the main characters forgotten or misremembered. I sensed her willing back time, to have a few moments of my childhood all over again, to be of use, to be able to call the school and say I wasn’t coming in today, or to fetch my favourite food. I felt we were both on unfamiliar ground, her stroking my hand, mother and child again in outward appearance, but each with our minds full and confused. We were often mute and uneasy in each other’s company.
28 January 1962. Eight weeks old. Benjie sleeps from teatime and has to be woken by damp, pulsating, anxious mother at 3 a.m. Very talkative and gurgling after feed. Waves his arms and ‘sees’ my hand for the first time. There was a week when I rang the doctor to ask if his constant clean nappies were worth worrying about. He still sleeps in his Karry-Kot, as it is still cold. I wash him in the washing-up bowl because of the frozen pipes. Put him out into the perishing but sunny garden today in cap (knitted by me) which could ‘do with an inch’ as my mother said. M&S mittens. Muffled like a baby Eskimo. He needs fattening up. He has only been gaining a few ounces. When he was born from the first he seemed very contented. Brought into the ward morning and evening, the sun poured on to his cot and he rarely had to be banished to the night nursery. His eyes at birth were dark blue, his hair sparse and mid-brown. His eyebrows were indistinguishable, his lashes long, and his complexion was pale. (From my mum’s notes when I was born)
In the relatives room she chose to sleep on the floor, even though Tracey offered her the bed. I think it was some kind of penance. She claimed she slept well, but at night she would retire at about 9.30, leaving Tracey a final hour in the shadows by my bed. When Tracey finally left me and crept into the darkened room, she told me my mum’s voice would sound from floor level: ‘I’m still awake.’ She’d taken to smoking cheap filter cigarettes to calm herself, only to stub them out after a couple of puffs. She searched for order and understanding all the time, tidying up after Tracey, rearranging, changing outfits during the day, making the beds and little piles of things, getting me to repeat things that doctors had said so she could write down key words to remind herself and use to people on the phone. I found her overview of my illness was patchy. Tracey said she told her some facts several times. Her version as relayed to my dad must have been in turns strange, dramatic, true, nonsensical. And yet, above this turmoil and the wrestling with herself, I thought she still managed to present an image of restraint and togetherness by my bedside, and was able to be funny, and to laugh at her attempts to impose order on her confusion. One morning she told me how, from the window of the relatives room, she had devised an ingenious system to hang her washing out over the Horseferry Road, using two wire coat-hangers, and how she was sleeping with her feet in a waste-paper basket to stop the bedclothes from lying on them and making them so hot that it would keep her awake, worrying.
If she felt she was in the way of a test or a drug round she would creep away, and her quiet deference to Tracey in the times when I needed comforting must have been hard for her to sustain sometimes, but the positions around the bed were defined early on, with Tracey at my pillow, my mum at the foot. She despaired at my dad’s inability to cope with the proximity of my death. She hated him for it – resented that she was suffering and he wasn’t there to share the burden with her, to hold her hand, to be at her pillow. Tracey told me she would come off the phone to him and would shout and storm around the relatives room, tearing her hair with the unfairness of it all. She would travel back to Oxford by train once or twice a week for forty-eight hours, to check, as she said, ‘he hadn’t fallen in the river’ (one of her longstanding fears, when he was drinking) and try to talk to him, put him to bed when he couldn’t stand up straight, and be with him. But all the time I know she just longed for his support.
Some nights my half-sister Jennie would come after work, catching the tube up from Richmond. Not that she wouldn’t have come anyway, but I think she used to come for Mum’s benefit too. She knew the situation in Oxford. She was someone else for my mum to talk to. Mum would bring her in, and as I caught her eye as she came across the room she would cock her head to one side and smile poignantly and ruefully at me, uncomplicated, selfless. They’d sit together at the end of the bed, Jennie always convinced she was sitting on something important or too close to a piece of hospital equipment, and when she’d finally finished shuffling and scratching around she’d settle like a hen on a nest and beam at me. My role as her little brother came out strongly to her. She was nine when I was born. A baby for a little girl. She used to regularly bandage me in pretend games of doctors and nurses. I don’t really remember what we talked about when she came to the hospital. I just see her face – happy, sad, engaged, bound up in the immediacy of the present.
I am sitting out in a chair today. The sun has just appeared from behind the tall trees outside and is shining on my face through the high windows. The windows are open. I feel air. I close my eyes. I can’t believe I am in here, in this place. Hospital. Intensive Care. With my eyes closed I could be in the garden at home or on a beach, but I know when I open them again I won’t be so I’ll keep them shut for a few more minutes. I am sweating into my dressing-gown, but I don’t care.
‘Your turn,’ says Tracey.
I open my eyes. The Scrabble board is on the invalid-table in front of me.
‘Sorry.’
Tracey began with ‘ACQUIRE’. I could only manage ‘RAT’ in response. She is now forty-five points ahead. I have no energy to think. My mind feels like it is running on a run-down battery. When I try to think it turns over like a car engine after the headlights have been left on all night. My neck is stiff. My shoulders hang like the yoke on underfed cattle. This is the furthest we have got with this game. The last two attempts ended in my conceding after only three words. Yesterday I couldn’t even face starting, so exhausting was the laying out of the board. Match abandoned. My mum is watching us. She is happier today with my colour. Not so waxy and yellow apparently. I stare at my tiles. Nothing. ‘S … N … I … U …’ Wait a minute. SEQUINS! Incredible. I plant the tiles on the board and beam at Tracey.
‘What’s that?’ she asks.
‘Sequins. And a double-word score. Thirty-two points.’ I am beside myself.
‘OK then.’ She looks suspicious, but under the circumstances understandable leniency prevails.
‘Are you all right?’ she asks.
The moment exhausts me. ‘Yes. But I’m going to have to retire now. Good word though.’
Like a lone diver among sharks, I would watch the cool-eyed doctors and anaesthetists glide round my bed. The doctors on ITU were strange, humourless, intent. They struck me as total scientists – more so than any other doctors I came across. Most of the patients they were treating were living on the slope of death. Patient survival was rooted in the minute analysis of charts and the balancing of chemicals, not so much in warmth of human contact, and so the doctors glided from flickering monitor to flickering monitor amid the sonars of bleeps and alarms, gauging, estimating, quiet, serious. I never struck up a conversation with one of them, just gleaned a few facts and watched them mutter among themselves.
Of course I didn’t eat. I was hooked up to a special feeding system called Total Parenteral Nutrition (TPN). Prepared in sealed laboratories by scientists in space suits, the food was a nutritionally balanced, calorie-controlled milkshake, lasting twenty-four hours and costing £250 a bag, fed by a regulated pump directly into my bloodstream via the deep line sunk into my chest called a Hickman line. This was all in order to bypass my digestive system. Each bag was made up specially for every patient who needed one. In spite of being fully intravenously hydrated by an additional saline drip, I instinctively wanted more water. My lips would stick together, and the drugs left bitterness and mustiness in my mouth. Anything passing from my stomach to my intestine, however, would have stimulated dangerous digestive muscle action in the healing gut. Twice a day I was allowed to suck on an ice-cube – I anticipated its arrival like an addict – but only after a naso-gastric tube had been passed up my nose, down the back of my throat and down into my stomach to siphon it off once I’d swallowed the tiny amount of water it gave up. The tube, which was regularly replaced, would tickle when I spoke, as if I were touching the back of my mouth with the tip of my finger.
Henry, an old man opposite me, slept all the time, unhappy on his respirator, beyond the tree line of consciousness for hours on end. When he woke he couldn’t speak, and would toss his head around on the pillow. One nurse told me that he’d lost the will to live and often wouldn’t even try to breathe, needing reprimands and chest massages. He’d let the female nurses wash him but he’d never let them shave him. I wondered what he was thinking in all those hours of tossing and sighing, stubbly, insistent, stubborn.
All the patients on ITU had X-rays. Every day. Chest X-rays for everyone, and the occasional abdominal X-ray for me. The fear of chest infection was a real one among the nurses and doctors – weakened patients, lying down for days and days, had phlegm massing up around their lungs, havens for bacteria and viruses. The descent into pneumonia or septicaemia can be sudden and fatal. The mobile X-ray machine would come round in the middle of the morning, like a small armoured vehicle, manned by young, brusque female technicians wearing white nylon dresses and lead aprons. I would be sat as upright as possible and rested back against the hard square boards of film, and then shot from above with a lead pad over my groin, while all the nurses went and hid around the corner. ‘X-ray,’ the technician would cry, and everyone would drop what they were doing and scuttle to a safe distance, until the same voice would cry, ‘Breathe in … Hold … Thank you’, and with the all-clear sounded everyone would leave their shelter and pick up their conversations in mid-sentence. Some days I’d be in pain and would be unable to sit up and the nurses would roll me over half-sideways and force the film under the mattress, then roll me back and shoot from overhead. By lunch-time the films were back and processed, snapped up under the clips on the sodium light-box. I got to recognize mine from the dark outline of the negative. After a moment’s scrutiny one of the doctors would turn to me and say, ‘Clear as a bell.’ They all used the same line.
After the morning X-ray round came the physiotherapists – women again, this time in white nylon tunics, mildly flared blue trousers and trainers. The impression given was slightly girls-school sporty. They seemed to bring an atmosphere of hearty fitness with them, marching in, carrying clipboards. It always seemed humorously out of place. Bright, insistent, manipulative, they were keen to get everyone on their feet as soon as possible. I was amazed at how soon I was expected to walk.
It was the first time I really noticed my body. My legs. The weight loss and the muscle depletion. I couldn’t believe it. So sudden. I was over twelve stone when I was admitted, and now my legs were like those of a famine victim. I was a fat little boy when I was growing up. Photographs show me unhappy with myself. I wore T-shirts to swim in on holiday, because I didn’t like people to see me, and as a teenager when I bought new clothes I forced myself into trousers one size too small so that the girls who worked in the shop wouldn’t think I was unattractive. During my twenties I often dieted to lose half a stone. Crash diets for four weeks. I went jogging at university to lose weight when I started going out with Tracey. I went jogging when we started having our photographs taken when we left. I battled constantly with my own self-image. On good days I saw myself as a young Orson Welles; on bad days I was Doughnut from The Double Deckers. But now the skin seemed to hang off my arse in little folds, dry and loose. Tracey says I looked like a little old gnome. I’d lost a stone and a half in less than a fortnight. I was just staring at my kneecaps. Huge kneecaps like pool balls. I shuffled to the door of the unit and back, pushing two drip-stands, clutching them like shepherds’ crooks. I was hunched over with dreadful backache. The journey there and back was about thirty feet, but it left me feeling tired and sick, wanting to lie down. They made me sit in the chair for a while to keep my circulation going and to keep my chest upright. I had to take deep breaths in front of them and then make myself cough in spite of the intense pain it caused in my stomach.
I had permanent backache. I had my mattress changed two or three times in the first couple of weeks and would sometimes lie with a hand-towel under the small of my back. Sometimes I made the nurses change it just because I was in a foul mood and it gave me something to think about. They were always patient and understanding, tolerant of my irrationality. Most of the time I was on a special air mattress that helped prevent bedsores by evenly distributing the body weight. As my weight dropped and my muscle wasted I felt my bones beneath the skin. They seemed skeletal and unprotected. My pelvis felt like a hard shell. My toenails softened and were hard to cut, and my feet would dry out and the skin would flake. One afternoon, Melanie, a sister on the unit who practised aromatherapy, massaged my feet with oils. It seemed very luxurious. They smelt of grapefruit all afternoon.
The next Sunday morning one of the nurses asked if I’d like a shower. I hadn’t washed properly for nearly two weeks. It seemed impossible, like the trip outside just after my operations, but she disconnected me from my feeds and temporarily capped off all the other lines with bungs and stoppers, sat me in a wheelchair, and taped a black bin-liner around my left arm as a makeshift to keep it dry. She draped a dressing-gown around my shoulders and we set off for the shower-room. The wheelchair had a hard seat. It wasn’t actually a wheelchair but a commode on wheels with the lid down. We rattled along. I sat very still. I felt like a statue being moved for an exhibition. A couple of nurses waved at me.
There was a plastic chair in the shower-stall. The nurse, Carolyn, held my arm as I stood up. I was wobbly. I let the dressing-gown fall to the floor and stood naked for a moment. I remembered being in there during my time on Marie Céleste. It seemed like years ago. Carolyn turned the water on. I stepped in and sat on the chair. The sensation was overpowering.
I am under a waterfall. It is so warm. I can feel my body. It is waking from a deep slumber. The water pounds on my head. I feel lethargy rising and leaving me. My body is singing to me. I feel content for the first time in weeks. I feel like a rare animal saved from extinction. I am tiny. A marsupial. The dressing on my belly is soaking through. Is that OK? The lint and the gauze are wet now. Underneath there are twenty-eight shining staples. I know that. I asked the surgeon. They are holding me together. Not stitches, staples. Do they use a staple gun? My groin is stained with iodine. Amber and copper stains like leaking central-heating pipes. Little rivulets are running down my waterproofed arm. The air smells of blocks of cheap white soap, like school showers. I can catch the water in my bottom lip and spit it out like a whale. I don’t want to come out.
Back in my bed in laundered sheets, dusted in talcum powder, my hair still damp, new dressing, I felt like a king. My mum brought my dad to see me that lunch-time. It was the first time I’d seen him since he’d left me in X-ray. He shuffled around a bit, stood out on the balcony while my mum threw glances of apology at me. I found myself treating him as though he were the patient, politely asking after the dog, Grandma and the car, trying to keep the minutes from dipping into silence.
I felt so clean and content in my bed that the awkwardness of the occasion didn’t register as much disappointment with me as it did with my mum, whose final look of despair as she led him out touched me more. I’m sure their inability to share their fears was miserable for both of them – my dad deep in a world of denial, speechless and unhappy, drinking heavily; my mum willing to confront it all head on, desperate to understand and to talk to someone. On the day I first went up to theatre and the true seriousness of my illness finally became apparent she had been alerted by Sheila and phoned for a taxi and paid the driver fifty quid to take her all the way from Oxford to London while my dad stayed behind, staring out at the river on his own, his car in the garage, his dog by his side.
21.00–0.700 Night nursing staff start duty. Observation and treatment is geared to providing maximum sleep and rest for the patient during the night-time. (ITU Relatives Leaflet)
The late evenings were long. One night I asked John, one of the staff nurses on the unit, if he’d care to wheel the TV over and watch the midnight cricket highlights with me with the sound down, so as not to disturb the other patients. I was covered in a rash from an allergic reaction to one of the drugs, and the calamine lotion that one of the nurses had been applying all day had started to cake and suddenly it made the itching and irritation worse. In the end, I sat watching the cricket while John stripped the sheets back and washed me down with cool flannels. I felt decadent – washed down by a man at midnight in the flickering glow of a silent TV.
I am trying to get to sleep. It is late. Who’s coughing? What’s beeping? It must be half two. I can’t twist on to my side. I can only sleep on my side. I’ve been on my back for sixteen hours. If I put this hand under the pillow maybe I can pull myself over a bit. No, that hurts. I want to put one hand between my knees and roll over. Please. Now then. I’m yawning. A good sign. Come on. Gently now. I’ll pull on the bed-frame. Haul myself over. Here we go. These drips and feed lines. They keep snagging. They are like seaweed on the keel of a ship. I give up. I’ll just list here awhile, then roll back. That shouldn’t hurt.
Sleep came fitfully. I had to ask to be laid down. I couldn’t do it myself. If I had them lay me down too early, before I was tired, I would lie and stare at the ceiling, the peeling corners, the remnants of Blu-Tack from Christmas decorations, the slow drip-drip-drip of the drugs hanging above me. The hands of the clock never seemed to move between three and five. On bad nights there was a constant chorus of alarms and bleeps from the other beds, or the raised voices of temporary Australian agency nurses coping with a patient’s incontinence or Henry’s reluctance to breathe through his respirator. An emergency beside another bed could last an hour. I’d lie stock still and listen to forty minutes of ‘Come on, now. You can do it. That’s it. Good girl. Easy does it.’ I’d call someone over and ask to be sat up for no other reason than to be sat up, and then have to be laid down again for no other reason than to be laid down, all the time listening to the quiet chatter of the night staff as they ate apples and chocolate brought from the machine down in reception. They’d talk about Hello!, holiday plans, boyfriends; file their nails with emery-boards, prepare drugs. There was a nurse from New Zealand called Marie. On my first night out of sedation, having been told I couldn’t eat or drink, I watched her eating peach slices and strawberries from a Tupperware box. I was hot, bone dry. Others were snacking on crisps and Diet Coke, but it was the fruit I suddenly desperately craved. It seemed so wet and real amid the machines and the sonar beeps and the smell of iodine and musky skin.
Images of food and favourite meals started coming to me regularly. I thought of Saturday mornings growing up, when everyone was still largely living at home. My mum and dad would finish the shopping and then pop down to the pub for an hour. My dad would have prepared his pools coupon, and my mum would have had a little bet on some horses picked solely for their loose connections with the names of members of the family – Simon Says, Ben Nevis, Romany Way – and at two o’clock they’d come home for lunch and an afternoon in front of the TV. Sausages, beans and mash were served around 2.30. When my half-brothers were in their late teens and early twenties they took weekend jobs as bar staff at the same pubs my mum and dad frequented, and sometimes all of them would come home and up to fifteen or twenty sausages could be cooking in the pan at one time. There would be racing from Chepstow or bob-sleigh or all-in wrestling, and the smell all over the flat would be dense and meaty, the wooden spoons stained deep orange with bean sauce, the rising steam from the boiling potatoes misting up the kitchen windows so they’d have to be opened even on the coldest days. On days when a lot of us were home we’d have to take turns in mashing.
I saw garlic-sausage sandwiches made from fresh seeded bloomer that I ate day after day as a schoolboy with glasses of cold milk, the roast lamb and onion sauce for homecomings, the porterhouse steaks for very special occasions when I was the lone teenager at home after everyone else had left, the Hungarian goulash for visitors. I saw foods on the shelf in the meter cupboard in the hall that I have never touched since – Carnation milk, corned beef, luncheon meat, cock-a-leekie soup, prunes, fishpaste. As a thirteen-year-old I considered my ideal moment to be eating a quarter-pound cheeseburger and chips with Devil’s Food Cake to follow while seated in a box at Chelsea with Joanna Lumley.
My hospital bed was by the window – old French windows that opened on to a small balcony with a black iron railing. The night nurses would leave the door ajar at night with the tatty green blind pulled down halfway so I could see out. I liked to feel the night breezes on my face, and the door would stay open until another patient complained of a draught or the rattling blind made too much noise. The room overlooked a garden – the public garden I’d walked round on that first Sunday – an umbrella of tall and leafy trees, council flower-beds and a tarmac path. During the day it served as a short cut for most people. Few stopped off to sit on the benches, only drinkers and solitary people. On sunny lunch-times the grassy lawns attracted builders and secretaries.
On one balmy evening the Prof turned from reading my wall chart, jingling the loose change in his pockets, to point out that the tree nearest the balcony must be a fruiter. Spindly and indistinct though it was, he said it was plum. He took his holidays in Kent. Nobody could disagree with him. He was a charmer who wore bird’s-eye-check suits in a style reminiscent of the ones my dad had made in the sixties when he was Jack-the-Lad on Archer Street. I think my mum quite fancied the Prof – white swept-back sideburns, little veins on his cheeks and nose, twinkly, relaxed. He had an air of maverick authority about him. An irresistible quality to my mum.
At night the garden was different. The pub on the far side looked neo-thirties, and after hours the awning lights were left on, casting a soft orangey light over the streets. Cars would glide by. Garage doors would open and close at 3 a.m. Figures on the pavements. Leaf shadows dancing on the blind. It made my life seem cinematic and even more extraordinary than it already was.
There were two corner rooms on the unit, separated from the main room by glass windows. Serious cases in need of complete isolation went in them. Henry was in one for a couple of nights. A young black girl was put straight into the other when she arrived. All her skin was coming off, like the pith of an orange. I saw blisters and ulcers all across her face. She’d had a bad reaction to a drug. The nurses smothered her in creams and jellies to try to hold her together. Her family came in regularly and brought her cassettes to listen to. She couldn’t speak. Her mouth and lips were all affected. I caught sight of her occasionally. She was always sitting upright, day or night. Music seeped from her room – Anita Baker, Luther. When the doctors came to see her the blinds were pulled down.
I dreaded being confronted with other people’s pain. I dreaded a moment in the night when the doors would be flung open and a crash victim would be brought in. I imagined blood and panic, the ‘wild white face’ of Larkin’s ‘Ambulances’. Of course all that would have happened already in Accident & Emergency and by the time they’d been sent up to ITU they would have looked like every other patient – sedated, ventilated, on their backs, hidden under clean white cotton blankets – but I still watched the doors at night.
I listened for the alarms chiming like cookers and digital watches from the other beds. I got used to their patterns and didn’t like it if they went off irregularly. I watched the faces of the nurses if they picked up the phone or took one another aside.
I sometimes blocked my ears with my fingers when curtains were drawn round other beds. Someone came to fit a drip into Gwen’s arm late one night. Gwen was very old and tiny like a bird, and her bowel was twisted. She spoke so kindly to everyone in her quiet high fluty voice. She greeted everyone who came to her not with a ‘Hello’ but with a statement of her age and the number of great-grandchildren she had. She had real grey hair, not permed or colour-rinsed, but shoulder length and in shades of real grey and steel and silver. She had no bad words to say. I knew the drip fitting would be painful and I had seen her small thin arms. But when the voice said ‘Hold still’ I really couldn’t bear to listen to her sharp gasps and gentle cries of shock and pain. They were like high, soft, falling scales of melody. It made my own anguish seem so boorish.
I could never tell if anyone actually died on the unit while I was on it. Tracey says a man – a frightening, skeletal scarecrow of a man – died of anorexia during my first week, but I never saw him. I always half-expected to see priests in frock-coats and solemnity, the closing of the eyelids, a sheet pulled over the head; but if anyone did die it was handled discreetly, and if they were quietly disconnected from their life-support rigs and wheeled away it was done behind curtains and made to look like any other trip up to theatre.
It was ten days after my last bowel-resection operation before I was allowed to drink anything. Of course I was well hydrated with a drip and the Hickman line feeding me TPN, but my mouth would crave liquid. Other than the occasional ice-cube, I was sometimes allowed to suck on a tiny pink sponge, about the size of a sugar lump, dipped in water, to wet my mouth.
On the tenth day I began drinking thimblefuls of water every couple of hours. Every day from then on, the Prof would come round and listen to my abdomen with his stethoscope for signs of life. ‘Bowel sounds’ were an indication of the body readjusting and beginning to work again. For a long time there was nothing. The Prof would look up and say, ‘Hmmm … pretty quiet in there’, and the surgeons gathered round my bed would shuffle off, murmuring and muttering. They were never introduced, although as a group they had kinder faces than the unit’s anaesthetists.
Of course the subject of food came up. I stunned my mum on only my second day on ITU by asking her, by way of my first serious question, whether I would still be able to eat well. She was speechless. At that stage nobody knew whether I was going to be on a drip for the rest of my life. I used to push the Prof on the matter. He said it was hard to say, but if things didn’t get worse I would possibly be able to eat lean meat and rice, thin soups and little portions of ice-cream. He asked if I liked jelly and custard. Blancmange.
He said most people had between twelve and fifteen feet of small intestine in which to do their digesting. He had managed to save me just under three feet. He reassured Tracey one night by telling her there were some people out there surviving with less. The constant trips up to theatre that I had endured were in part an attempt to save as much of the gut as possible, to only take out precisely what was necessary. Every inch saved was critical if I was going to recover and then have a relatively normal life. I’ve since been told that a less experienced surgeon when confronted with my rotting gut could quite easily have panicked and taken the whole lot out entirely that first day, leaving me a permanent hospital life to look forward to, never eating again, plumbed into a drip-feed.
When my bowel did finally start to move I felt like a child learning potty-training all over again. The commode would be wheeled in and I’d sit on it, passing what looked more like seagull shit than anything I could recognize. I’d fill up with pockets of gas, which when released on the unsuspecting unit would resound off the stainless-steel bowl like rifle shots, leaving me sniggering like a schoolboy behind the curtain pulled around my bed.
At least I never had trouble urinating. I got the nurses to take the catheter out as soon as possible, and one of my greatest pleasures during all my time in hospital was taking the plastic urine bottles into the bed and pissing, lying half-upright under the warm bedclothes – rich, hot, mustardy piss, strong in the odour of chemicals and drug residues.
A Greek Island. I am thirteen. There is a donkey by the road – a road of dry baked soil, thorns and scrub. There is no shade as far as the eye can see except for the fig-tree the donkey is standing under. The donkey is urinating. His cock hangs flaccid like a small elephant’s trunk, gently swaying back and forth in the silent heat. A thick, loose, endless stream washes into the dust. I stare. It is amazing to me. His thing. He is so casual. So relaxed. Chewing on figs. Hosing down the road. I want to be that donkey.
The Prof went away on his holidays shortly after. Kent. I always pictured flat sunny days, oast-houses and apple orchards, the Prof in cotton slacks in a garden somewhere. Gins on the lawn. I had been started on capfuls of Fortisip, a build-up potion that smelled like 3-IN-ONE bicycle oil. Nick Law, his senior registrar; took charge for a week, but when, on a Sunday morning, I was suddenly stricken with a new, awful, abdominal pain, he was not on duty and a hurried call was put in to the weekend emergency surgeon, Mr Hunter.
I was sitting on the edge of the bed. It was quite early, around 7.30. Tracey had been woken by one of the nurses and had come in from the relatives room to be with me. I was hunched over with excruciating pain, naked except for a towel over my shoulders. I’d tried to get up for an imaginary shit and had nearly fainted. The message came back from Mr Hunter that he would be as quick as he could, but he was, ironically, waiting in for an emergency plumber.
‘Me too,’ I managed to say to one of the nurses.
A little while later he arrived. He rolled me over, gave me a prod up the arse, rolled me back, tapped and fingered my belly, said we should ‘sit tight’, and ordered pethidine, a morphine substitute. I took a heavy jab in my thigh and felt the muscle harden as the fluid rushed into my system. The drug was intense, protective, insulating. Within minutes I felt sleepy and wildly intoxicated. I drifted. The pillow seemed to swallow up my head, and for four hours I sank and resurfaced over and over again, warm, untroubled, on my own wide sea, the pain supported and cradled in the soft currents.
I imagined I was on Bird Island in the Indian Ocean, in a tropical downpour, the rain as warm as the waves, and I dreamt of the ten days I spent there with Tracey when we were mistaken for a honeymoon couple. I had flowers flown in on Valentine’s Day, and we spent the early mornings beachcombing for splintered driftwood and the evenings amid the wheeling frigates and the birds feeding by the water’s edge. The tik-tik-tik of whimbrels. Sanderlings and plovers. I found a piece of coral shaped like the tubes leading from a human heart. Darkness dropped like a curtain. We were intensely happy. Wicker hurricane-lamps swung from the terrace outside our room. Tiny crabs scuttled in the wet grass at night, and the moon settled like a giant blood orange on the sea.
Tracey sat by my bed and read. She held my hand, releasing it momentarily every couple of minutes to turn the page, and then taking it again until it felt cold, when she would slip it back under the blankets.
I couldn’t begin to think who we were becoming or if we were the same any more. Everything was in a sharply focused present. There was no past to us I could recognize or wanted to compare. No future either. I saw a repeated image of her walking by the Embankment alone, just walking to fill time, the right foot barely knowing what the left was doing, and it left me speechless. Many hours passed in silence, as though we were saying in code, ‘I know. I know. Later, later.’
I took two more painkilling jabs that day and don’t recall any more. By the Monday morning the pains had subsided a little, Nick Law was back, and there was talk of another investigative trip to theatre. It was decided to remove the Hickman line from my chest. The site where the line entered my chest had become vulnerable to infection, and under the circumstances it was considered a wise precaution to remove it. I would be fed through my arms instead and another Hickman would be inserted in a couple of days.
That evening the anaesthetist arrived to take it out under a local anaesthetic while I lay in bed. They said I was too vulnerable to infection to be taken off the unit. Needles were becoming a phobia. They tried applying numbing creams before starting, but I still started to wriggle. The local was jabbed into my chest. Two nurses had to hold me down as the anaesthetist leant over and cut the skin that had grown around the site of the line. A stitch was holding the line in place and had to be cut away. Tracey was just saying ‘Look away. Look away’ over and over again.
The line was drawn slowly from my chest. It must have been fed in at least a foot. I wanted to yank it and finish it off myself. When it was over they put me in the chair and tried to calm me down. I was taking shallow, shocked breaths. They told me they had to take some blood to use for cultures. My veins were small and useless. The needle drew nothing from either arm and I shouted out and tried to get up. It was finally jabbed into my knuckle.
By the next morning things had improved and I was given a reprieve. The trip to theatre was cancelled. The pains were never really explained.
Since the shot of cyclophosphamide after my first operation, I’d effectively been left with a severely depleted immune system. The drug simply erases large amounts of white cells and then waits for the body to re-establish them over a few days, hopefully at a normal level again – like switching off a TV and then turning it on again hoping for the picture to settle. However, the drug does not differentiate between normal infection-fighting white cells and the troublesome allergy-response cells. I was wide open to any passing bugs and bacteria.
I had regular mouthwashes and antifungal rinses. Everyone had to wash their hands before coming in to see me. Tracey and my mum were discouraged from kissing me goodnight. My mum took to kissing my foot or my forehead. Tracey was allowed to help wash my hair, fixing a shallow tray under my head at the end of the bed with a special drain-hole that emptied into a bucket placed on the floor. Hair-washing was quite a treat. I loved the massaging, the physical contact, the sensuality, the smell of baby shampoo, the damp drying hair. My hair was washed and my blood continued to be taken every day.
For ten days my blood results were scrutinized daily for signs of infection or the eosinophil count restabilizing itself Nurses would phone down to the labs at lunch-time, or a porter would bring in the pink piece of paper with the results. It was like waiting for a lottery result. My infection-fighting cells returned to normal as expected, but my eosinophils initially overshot their normal mark when they began appearing again, and every one feared the worst – that they were signalling the immune system’s continuing volatility and instability – but two days later they started to fall again and then stabilized at just above normal. It was a good sign. People began to talk of me moving on to one of the wards to begin a full healing process.
Samples of my bowel had been taken for tissue-analysis tests for a fuller diagnosis. The rheumatologists were suspecting a particular rare form of autoimmune disease but were diplomatically using a temporary generic description – eosinophilic vasculitis – while the definitive tests were undertaken by the histologists. It looked likely, however, that my immune system had responded to some kind of allergy, not a parasite or virus.
Less vulnerable to infection, I was allowed out in a wheelchair again – I’d been ‘off games’ for a few days – and Tracey would push me across the corridor into the room where she and my mum were staying, and we would sit for an hour and watch the Barcelona Olympics on a portable TV. Mum would have had a little tidy-up especially, and Tracey would make them a cup of tea and we would all try to treat it as a kind of visit, striking up conversations with renewed enthusiasm even though we’d all been in each other’s company across the corridor only minutes before.
Two days later I was told that I was finally going to be moved upstairs to St Mark’s, a surgical recovery ward. I didn’t want to go. I envisaged a long Nightingale ward, men coughing all night and a TV on all day, afternoon dead-time quiz shows playing to inattentive, listless watchers, trolleys of inedible food.
When the day came, I was to go via theatre, where a fresh Hickman line was to be inserted in my chest under general anaesthetic to enable me to be fed by TPN again. I’d had two days of emergency temporary food drips in my wrists. My arms had stung and buzzed with the strain of thick, gritty fluids.
I joined a stacking system. Hickman lines were obviously not top of the list, as my slot was shifted back from late morning. It was 4.30 by the time I eventually left the unit. I remember sitting on the edge of the trolley for an hour, waiting for the porters to come and get me. The unit was full of sunshine. The green trees of the gardens were behind me. I dangled my legs over the side, gently swinging them to and fro. I felt like a child on a bunk-bed. I was wearing a cotton theatre robe, stiff and starched, tied in bows down the back. Everybody I saw who wore one standing up felt their arse was on show and that everyone else was looking. I used to watch wide-eyed out-patients and newcomers, sometimes up at X-ray or preparing for theatre, pulling the material together behind them, covering up, grasping at their dignity. Theatre gowns are a cruel design, playing on the quiet humiliation brought on by unfamiliar hospital life. They level everyone. Hospital turns life upside down. It seems fitting that the uniform should be a gown worn back to front.
The steel trolley frame was cold against the back of my thighs. All my lines had been removed, even my temporary feeding lines. I felt relaxed. Up on the top floor, the theatre floor, I was wheeled into the anaesthetist’s room. The black cup came. I breathed in the oxygen. The veins in my arms were dry river-beds and I had no lines, so the needle for the anaesthetic had to be twice jammed in deep before the blood-table was found. It felt like a big needle. In my mind’s eye I saw oilrigs, derricks out at sea, the huge spinning drills spitting oil, churning, billowing waves, grey and green, the colours of nausea, men in hard hats tapping deep into the core of the earth, below the sea floor. I winced and flinched as the needle was held in. The anaesthetist mumbled behind his mask. I closed my eyes.
‘One, two …’
Hummingbirds, hummingbirds.
‘… three, four, fi …’
Gone.