Patient Read online

  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, Gr
andma 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.