You Left Early

by Louisa Young

  In the following weeks he used notebooks to talk. I think he threw them away. I wish he hadn’t. I would have got them out of the rubbish but I was trying to be respectful. He knew that.

  I did find one, later, under a piano. (It’s reproduced on p. 397.) He wrote at random on different pages. There isn’t much order, and I don’t know who things were addressed to. They make a peculiar and specific kind of poetry, an account of his rollercoaster of agonised despair and buoyant optimism, his humour, his fear and his irrepressible need to communicate and be playful.

  Chapter Thirty-Three

  My Car, Summer 2010

  I was at the lights on the Marylebone Road heading to the Euston Hilton, as he called it, when my phone rang. Seeing his nickname come up (The Genius), I answered. I thought it was a nurse or someone ringing for him, like waiters and Australians in the past. But it was him. And he said hello. Croaky and weird and nasal, as if goblins had nailed down his tongue. But him. I nearly crashed.

  He was talking talking talking. He got the hang of it quickly. It wasn’t that bad! I mean, it was awful, and hard work, for him and for the listener, but it wasn’t that bad. It was a miracle and a fountain of joy. We talked on speaker for the rest of my journey towards him, and while I parked, and across the car park and the lobby, until we got cut off in the lift.

  ‘Doing brilliantly,’ they said. On 14 July he was out of hospital and I posted the Raveonettes’ ‘My Boyfriend’s Back’ on Facebook.

  At home, I looked in his mouth. His tongue – the remains of it – lay sideways. At the back his epiglottis hung awry, like a chandelier in a bombed-out ballroom. It was clean and strange. I could kiss him. He could kiss me.

  That summer was, seriously, all right. He healed up. His face was not so much scarred as odd and pulled about a bit. His mouth took on a humorous, slightly bitter sideways twist, Buster Keatonish and not inappropriate. The stitchwork had been immaculate.

  I started to get the hang of his speech. Pillow-talk suffered, and it drove me mad when he talked to me while I was driving, because I had to look at him to properly understand and hear him. ‘Wait till the lights!’ became my cry. He got the eating back up too – he was on shepherd’s pie after only a month or so. We went to Rousham, we went to concerts, we went to speech therapy and the nutritionist and clinic every week and the dental hospital, he swallowed little boluses of things that showed up on the X-ray film they made and I photographed it, his bicycle-chain jaw hanging there, his swallow improving. He had a kidney blood test, a mask-fitting. He had an eye test. Jackie played at the Wigmore. Lola sat her A-levels, and got her results. We didn’t go on holiday.

  ‘Thank you,’ he said, ‘for all this.’

  ‘You’d do the same for me,’ I replied.

  A beat, then we both started laughing.

  ‘Tell you what,’ he said. ‘I’ll get you health insurance.’

  *

  Something hasn’t come up very much for a while. One day at a time; one disease at a time? It’s not that his alcoholism ceased to exist, or to matter, but recovery from cancer and cancer surgery was a more immediate requirement. And I really was leaving it to him. Of course the voice issue made meetings harder. I actually can’t remember if he was going to meetings now. I also can’t remember anything about the breast cancer my mother developed during this time. I don’t know what year she had her mastectomy. I know she didn’t like the tamoxifen, and chose not to continue with it. I know that she and my family dealt with this without my contributing a damn thing. I understand how that happened, but I’m sorry.

  *

  I was waiting for one of my sisters in my car on a yellow line near Holborn, using the time to apply cream to my hands, putting my rings on the dashboard. A parking warden approached. I saw her in my rear-view mirror and pulled out, thinking to find somewhere safer. When I pulled in again the engagement ring was nowhere. I searched my lap, I stood up, I searched the seat. I lifted the little rug in the footwell, and the other footwell in case it had jumped. I looked in the door pockets, under the seat, down my shirt, everywhere. I knew it had gone down the ventilation vent under the windscreen. There was nowhere else it could have gone.

  Back home, Robert said in his goblin voice, ‘Oh good, does that mean I’m off the hook?’

  David, the Buddhist Saab specialist (The Karma-chanic, oh how we laughed) came round, and searched, and unscrewed things and took them to bits, and said, ‘It’s in there somewhere. It can’t have got out.’ He said, ‘When the car’s had it, call me and we’ll find the ring.’

  Chapter Thirty-Four

  UCLH Radiotherapy Dept, September 2010

  I hadn’t quite got the point about radiotherapy and chemo. Though it wasn’t actually chemo. It had been going to be cisplatin; it was in the end a biological therapy called cetuximab: more expensive, potentially better, less likely to cause deafness which they recognised as an issue for a musician. ‘It will also,’ said Dawn the oncologist, with a wry smile, ‘involve complexion-related side-effects that are, hm … a test of love.’

  Test of love? Bring it on! I thought. Vainglorious romantic idiot that I was.

  From 13 September, once a week for seven weeks, he sat for hours in a big, well-worn, blue puffy armchair, cannula in his arm, being poisoned, while I read him the paper, or wandered the neighbourhood getting in the groceries at Sainsbury’s on Tottenham Court Road, or drinking coffee. I had a Chinese massage one time.

  The radiotherapy started a week later, five days a week for six weeks. We took cheesecake in to the unit staff. The red-faced Northern girl; the beautiful sunshine smiley girl, God I’ve forgotten her name already – Marie? no – and the carroty redhead; the camp man, the Indian girl, Polish Beata. Val who did little dancing steps with her tiny feet. Dr Asad with the pretty shoes, who never smiled. They worked in the depths of the hospital, the second basement down, in corridors which extend under Tottenham Court Road. Robert’s machine (LinacE – linear accelerator E ) was, apparently, right next to the tube platform, only the wall between them.

  In Doctor Who when the new scary thing appears, you don’t know to start with if it’s going to be good or bad. LinacE is like that: a great swan of a machine, a vast Kenwood mixer, a 1970s telephone, a spaceship, strong and unnerving.

  I watch on computer screens from a different room, two of them giving different angles on the scene. In front of LinacE is a gurney to which Robert is led by white-coated radiotherapy handmaidens. They assist him out of his shirt – the long scar down his back is red and livid – and lay him down on his back. They bring to him his turquoise mask: this has been made and moulded to fit precisely to his face, head, throat and shoulders, of a light but firm plastic mesh. The colour glows rather. They place it carefully over him and screw it down with little metal slots and bolts to the block on which he lies, so he can’t move. It is scratchy and claustrophobic, a torture implement in primary-school blue. It is vital that he does not move. They check repeatedly. It takes time. There are holes melted into it for his nostrils, and a hole for his mouth which looks like the mouth of Munch’s Scream. (Robert’s long-term plan for it is to spray it gold and hang it on the wall: make a medal out of it.)

  The handmaidens move away, the table rises to the machine, offering him up, back arched, bare-torsoed in jeans and boots, his knees falling sideways. It is impossible not to think of altars and sacrifices. LinacE starts to move. It leans in, turning, turning, so gentle and curious, looking at him from various angles, circling him, sort of enfolding him, over and over. The Swan photographs him for fifteen, twenty minutes. The handmaidens come and check again. It has to be exactly right. After a while the beeps begin, and the handmaidens silently leave the screen.

  The red and green sign lights up outside: Radiation On. Every day for six weeks, burning him. Every day I sit in the corridor. Every day I take him home.

  During these weeks I develop a bad Facebook habit, watch all of Mad Men, and write a series of relentless, bitter villanelle
s.

  *

  By day twenty-four he was deaf in one ear. His saliva turned to snot in his mouth, a plague of acne burned on his face, and he was drooling constantly. He was so tired he collapsed reaching across the bed for a T-shirt. Just collapsed. Peeing in his food-product bottles like he used to pee in vodka bottles. Blood and mucus on the sheets every day. He slept, went to be burned and poisoned, he injected medicine into his stomach through his peg. He lost weight. We had to get it back up. If he took too much feed he was sick through his non-existent throat, and then what about his medicine? I had responsibility but no authority. Do I give him more? Or not? Or how much?

  I dragged his wheelchair behind me because these UCLH wheelchairs don’t work well being pushed. I tipped it over in the street from the main building to the Rosenheim, an unfortunate kerb. Everyone ran to help us. I used to say to him, in the bad old days: if you end up in a wheelchair because of this I’m not going to be pushing you around. And now because you have to mean what you say and not make empty threats, I was glad that the chairs were crap and the small print let me off. I wasn’t pushing him, I was pulling him. So I was keeping my word.

  I slept in the back room, to give him peace and quiet and because I didn’t like the gurgling at night. I thought he was about to die or vomit.

  *

  They said that ‘a week or so’ after the end of the treatments, he would start feeling better. I latched on to the ‘week’. Then the ‘or so’. How long is ‘or so’? Four weeks later he was not physically capable of getting to meetings.

  ‘How are you today?’

  ‘Worse,’ he’d say. ‘Worse than ever.’

  And he was depressed. Clinically. He did the ‘Can you move and do you want to kill yourself?’ Patient Health Questionnaire #9 Quick Depression Assessment. He scored more than five ticks in the blue section which means Major Depressive Disorder. I stole the Instructions (for doctor or healthcare professional use only). He didn’t want to kill himself but he’d thought about it. He ticked the box to say so. They said: it’s normal at this stage.

  The low winter sun was strong in our room, shining right at him all the short day, so he moved into the back room, where he slept twenty-one hours a day. He wouldn’t feed (feed! Well, I can’t say eat) or take his drugs if I didn’t make him. He was running on empty. He hadn’t had a bath since July. I was again running that line between making sure what needs to be done is done, controlling, bossing, nagging, saving him – again—

  For a while, I had been taking him in a hot wet flannel every morning, to ease open his caked-up bloody burned mouth. I mentioned it, in a ‘thank God we don’t have to do that any more’ way. Looking for good news as usual. God perhaps I am unbearable. And he said, ‘What?’ He’d forgotten. ‘Write it down,’ he said. So I wrote it down.

  ‘Good things: His ear hasn’t fallen off. The hole which was developing behind it has I think healed up, after six weeks of injecting splurges of amorphous anti-bacterial gunk into it. It’s hard to look to check. His hair is only falling out round the back, so he hasn’t noticed. A lot is gone. It looks like an outdated tonsure on an ancient monk. He is passive rather than concerned or interested. I feel that I am inflicting healing on him. His neck burns are very dry and shiny and a bit scaly, but the scabs are gone. He is so cold he won’t undress, so I peer down his collar. The light is never good. To be honest I don’t know what is going on. His mouth stinks. Cheesy, bad breath-y – dog breath. It falls to me to clean it, dragging out sticky yellow gob with the pink sponges on sticks. He retches. It smells. Sometimes it is caked thick like a scab against the very back of his throat and I use the long flat-headed tweezers to ease it off. There is a satisfaction to this, and afterwards his voice is clearer. The rest of him smells of nothing at all. Presumably because of the blandness of the feed? He doesn’t change his clothes – his pyjama/clothes combo. I suggest washing; he says, ‘tomorrow’. He’s too tired. It’s cold. Beautiful bright frosty days, full of sun, sparkly. I hear his hollow cough upstairs, coughing through a throat that half isn’t there. He doesn’t shave. He’s had enough removed from his face. No sharp knives. As a result he has half a beard. An entire little slightly Spanish-looking moustache, but no beard where he has been irradiated. He doesn’t eat, drink, walk, talk, read, laugh, smoke, play, fuck … who is Robert, if he doesn’t do these things?’

  He has exercises for his tongue, to be done every two to three hours, with a mirror: Start at one corner of your mouth and lick all the way around. Touch the corner of your mouth with the tip of your tongue. Then the other corner. Lift the tip of your tongue and try and touch the back of your top teeth … and so on. Hourly: Use the pink sponges; dip them in water, gently sponge over the tongue, and roof of the mouth. Practise swallowing your saliva. After you have cleaned your mouth, repeat the following: Place a teaspoon in a cup of ice, or use frozen swabs. Use the back of the teaspoon or frozen swab, rub on the roof of the mouth, and back of the mouth (left side, avoiding the flap on the right). Remove the spoon, swallow immediately. Repeat five to ten times. Dip a clean sponge in lemon juice, gently rub along the back left side of the mouth, and along the tongue, then swallow. Dip the sponge in lemon juice, gently suck the lemon juice from the sponge, and swallow. Repeat five to ten times.

  For the tongue tip: tea toe two tar top team time tip tea time day time tea pot detail table mat day out top hat and tails day and night …

  For the back of the tongue: key car kay core got goat gate game carpet counter kitchen cacti good gorgeous grumpy grandad …

  He didn’t do them. He was nil by mouth: nil going in and not much coming out. ‘You all right?’ I say.

  ‘Half left,’ he says.

  *

  He is prescribed Ondansetron. Ondansetron! It sounds like an intergalactic disco …

  *

  I felt madly extravagant, and fantasised about buying a 1920s velvet coat for £850, a thirty-year-old camellia for £300, a rug for £4,000. Rugs cost a lot, especially big ones. Lola sussed me – I wanted a big rug to keep the sitting room warm because then it would be warm for Robert and he would get better.

  *

  In April 2011 My Dear I Wanted to Tell You was published, though I hardly noticed. I was ‘working’ on the sequel, The Heroes’ Welcome, but at that stage it was no more than a painful diversionary tactic which failed to divert.

  I absconded occasionally. The district nurses would come by, and Jackie would stay the night. There were a couple of brief foreign book tours for My Dear I Wanted to Tell You, and once when a friend was singing her final night as Eliza in My Fair Lady at the Châtelet in Paris, Lola and I went on the train – an attack of spontaneity, a last-minute overnighter. We went backstage to congratulate her, and Sarah invited Lola out on to the stage, and let her wear her massively long white fur cloak from the ball scene, and swan about in it. Then we went and ate very late, coupe de champagne and steak tartare, and it was magical and almost a shock to see how enjoyable things could be.

  On the train back there were calls, the feeding tube was blocked, when was I getting in?

  *

  It was an obsessive existence. I emailed Jackie the instructions:

  Jackie –

  Could you make sure

  at night, that he has his evening meds and sets up his feed – sometimes he goes to bed for a nap, sleeps through and forgets to do it.

  in the morning, that he doesn’t sleep through his feed finishing (it beeps loudly), and therefore neglect to flush the tube through with water. It usually finishes between 7.30 and 9ish, depending when he started it. It’s OK to leave a bit of feed unfinished in the bottle; important not to leave tube unflushed because that’s when it blocks.

  His medicine is on the kitchen table. I usually bring up the morning meds and give them to him when turning off the feed and flushing. There is chicken broth and fruit smoothies/juice in the fridge, and the jars of Ensure. He needs to get as much in as he can …

  His appointment
s are in his diary (sitting room, table). Monday Helen the speech therapist is coming at 9.30; cd you leave keys? Also on Monday he has an eye test at Charing Cross Hospital at 2 p.m. Letter on the mantelpiece. He might want you to book a cab for him: he gets special cheap ones from the council (phone number here); ref number HF648042. On Thursday Josephine the Physio is coming at 11 a.m. – same key arrangement. Also probably (but he needs to confirm with her – phone number here) he needs to go to Gaynor the Counsellor at 1 p.m. Disabled parking pass is on the kitchen table. I’m back last thing on Thursday.

  There followed a list of seven more emergency phone numbers, from Louis to the district nurses, and the thirteen medications he was on, and the mouth exercises and cleaning routines he should be doing.

  He did get a chest infection – from food going down the wrong way due to lack of swallowing capacity). They gave him amoxicillin for it, to which he was allergic, so there was diarrhoea and he was back in hospital, but on a different floor, oh the excitement. He was in isolation, in case it was some terrible infectious diarrhoea rather than an allergy.

  What do you actually do with shit-covered sheets? Four times in one night? But the shit smelt of nothing. It was as bland as the beige feed.

  *

  Robert and I once sat down with a friend, an NHS doctor, and ran through all the treatments he had had, and their cost. It was an estimatory kind of maths to set that against the tax he had paid over thirty-five years of drinking and smoking, but there was no question about it: ‘You’ve paid for it,’ the doctor told him. ‘Every treatment, every investigation, every visit to hospital, every drug, every surgery. And more.’