Patient Page 6

  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 wer
e 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.

  Three

  I am lying on my side. Why my side? Who rolled me over? The cotton blanket is warm. The trolley is hard. I am frightened to move lest I disturb the surgeon’s work. Or cause pain. Fresh, crisp, newly made pain. The light is bright and even and white all over the room. It is like opening a fridge door. A nurse sits at a table. Other trolleys. Other sleeping patients on their sides. Not many. I can see two. I am thirsty. I think I want to shit. I move a little. A little test. My chest hurts. I stop moving. I close my eyes and press my nose into the cotton blanket. Rest and sleep. A good place. Save me. Recuperation has a soft rhythm. My heart beats. I can feel the blood in my eyelids. The air from my nostrils is hot in the bedclothes against my face. My knees feel hard, stacked one above the other. I curl one big toe over the other. Gently. My feet are friends. I see our house. Papers all over the bed. The smell of matting in the hall when I come back from being away. Voices now. Someone laughs. I open my eyes again. How long did I drift? Two minutes? Two hours? The nurse has seen me. She calls the porters. I am in the recovery room.

  St Mark’s. The porter has gone. My chest hurts. The new Hickman is in. On the other side this time. I have a little suture where the old one was. It is early evening. I have a bed in the corner. The ward is quietly buzzing. I am unused to such activity. Visitors, lowered voices. There are a lot of flowers. Flowers weren’t allowed in ITU. Bugs in the water. There is a young couple opposite. He is in the bed; she holds his hand. He looks my age. He wears blue pyjamas and pulls a face when he moves. He has soft-drink bottles on his bedside table. Everybody does. Robinson’s, Ribena. My pillows are at an uncomfortable angle. My back aches and my chest is sore. I can’t be bothered to move. The air seems close. Tracey is next to me. My mum next to her. A staff nurse arrives. She is quick around the bed, slightly sharp in her manner. She is young, with the manner of a school prefect. Blood pressure, temperature, pulse. She asks me to sit up. I say I can’t. She says, ‘Try.’ I say I haven’t been able to sit up on my own for three weeks. She says I have to. ‘This isn’t ITU any more. This is the road to recovery.’ Another nurse comes over. They slip their arms under my armpits and each puts one knee on the bed. ‘Sit forward.’ I try. My stomach muscles don’t respond. It hurts. I am fuggy from the anaesthetic. They heave me forward. I cry out. They hold me there. I am limp, like a puppy in its mother’s mouth, but there is dreadful, dreadful pain. So bad, I have no breath. I can’t draw in breath to speak. I open and close my mouth like a fish. I want to stay, ‘Stop.’ One syllable, and I can’t say it. Nobody knows what I want, because I am silent. I am lonely. My pillows are rearrang
ed, my bed-rest altered. One, two, three. They heave me back. I cry out. Tracey is distressed. I smile weakly. I don’t want her to worry. She smiles weakly too. At last I am still. The nurses go. They have hung a little plastic sign from the bed frame above my head that says, ‘Nil By Mouth’.

  That night, my first on St Mark’s, the man in the bed next to me was complaining of feeling cold. He’d had prostate surgery, I think. Huge water-bags to flush through his kidneys were hanging at the foot of his bed, with tubes running under the bedclothes. An hour later he was shivering and his teeth were chattering. A nurse brought in a special super-lightweight insulating blanket, like thin Bacofoil, the type we were all told the first astronauts on the moon used. My mum returned from a trip to America around the time of the first Apollo moon landing, and brought one back – silver on one side, gold on the other. I was seven at the time. I used to wrap myself up in it on the sitting-room floor in front of the TV until I got so hot I’d nearly faint. Things like nearly fainting and holding my breath until my lungs almost burst, or shutting myself in a small cupboard until I nearly suffocated, were fascinating to me as a child. At school I used to pierce the skin on the back of my hand with the end of a compass or push the end of a plastic protractor under my fingernails just to find out what it felt like.

  The man in the bed next to me rustled under the Bacofoil blanket, and more bedclothes were put on top to hold it down. He asked for the window to be closed. I thought it was stifling.

  I tried to take my first solid food for three weeks. Scrambled eggs and a slice of white toast. I didn’t really feel hungry but craved the action of eating. I felt fine until the late afternoon, when I began to feel nauseous. My bowels cramped up. I started to vomit – not regular vomit, but watery green bile. I filled a bowl beside my bed. At eight, though, it really started. A whole litre this time. Strangely, it wasn’t an unpleasant experience. Quite nice all things considered. I seemed simply to have to open my mouth. The velocity with which the green bile erupted was astonishing, like a geyser. It was fascinating. Like cartoon spewing. I had five or six spasms, with either Tracey or a nurse passing fresh disposable buckets in the shape of bowler hats to me like firemen, while I filled them up and handed them back down the line.