You Left Early

by Louisa Young

  So Robert was to have a pedicle and a flap, just like Riley Purefoy; like a First World War soldier. The right side of his jawbone, from the temporo-mandibular joint to the centre, was to be removed and replaced with the section of titanium chain, and a flap was to be brought up on a pedicle from his back, to rebuild inside his throat. Riley had a vulcanite jaw, and a double pedicle flap cut from his scalp and swung down like a hammock to cover it. I said, ‘Have pedicles improved since Gillies’ day?’ Surgeons don’t expect you to know very much. I resolved to send everybody a copy of the book.

  I have form when it comes to what I write appearing later in my actual life. I once wrote a novel about a former-motorcyclist single mother with a bad leg who was living in Shepherd’s Bush and going out with a policeman. When I started it I was none of those things; by the time it was finished I was all of them. I resolved to start work immediately on a novel about someone surviving cancer in the most magnificent way possible. Or at least to give Riley a very happy ending. As it turned out, people tended to assume that Robert’s cancer came before the World War One novel, and was why I had written it. But no – though it’s true to say that like almost everything I’ve ever written, this too was about him. (In the Egyptian Trilogy: Harry. In Lionboy: Sergei the manky cat. In Lee Raven Boy Thief: Lee. In Halo: the darker bits of Leonidas. In The Book of the Heart: see above. In the My Dear I Wanted to Tell You series: Riley Purefoy’s physical injury, and Peter Locke’s mental ones). But I had already finished the book about the rebuilt face. It was well on its way out into the world. I had been thinking of a sequel …

  … and this is the moment when the normal healthy, dull, everyday world fades away, the world that we had begun to love so much since Robert’s sobriety kicked in,. I wasn’t thinking about a sequel (later I wrote two, The Heroes’ Welcome and Devotion, and I’m writing a third), or about my work at all. There were other things on my mind. I knew a sequel would of necessity be informed by what Robert was about to go through. Thinking about how to respect those grey areas where somebody else’s story overlaps and entwines with our own stories could take up a novelist’s entire life – and here Robert’s life was entwining with both my life, and my fictional characters’ lives. Without thinking, I put fiction away. All that concerned a world in which Robert and I no longer lived. Cancer turned out to be another of those diseases which doesn’t only happen to the person who has it, but to everybody around them too.

  A major difference now that cancer, rather than addiction, was the issue, was the shift in how we were seen. The addictions caused the cancer, and they were both going on in the same body, but there was none of the ambivalence we had seen before 2007. On the cancer ward, you receive the full symphony of sympathy, in all its unrestrained magnificence – I even got free aromatherapy massages – or would have, if I’d had time to take them up. No longer the demon alcoholic; instead the angelic cancer patient. No longer the co-dependent fool, instead, the beloved carer. To be honest, it was a long drink of water. People bring you cake. You can talk about it to anybody. They might suggest some stupid herb that they think can cure it, but nobody says, ‘I don’t actually think cancer is an illness?’

  The sixteen pamphlets I brought home this time included ‘Life After Cancer Treatment’, ‘Help with the Cost of Cancer’, ‘Sexuality and Cancer’, ‘Coping with Hair Loss’, etc. I did a little reality shift, and imagined: ‘Sexuality and Alcoholism’, ‘Help with the Cost of Alcoholism’, ‘A Guide for Enablers by Enablers’, ‘Coping with Co-dependency’.

  Compare and Despair, as the wise person said. But – cancer and addiction are both illnesses. They both kill you. With cancer, Robert and I were united against the illness. With addiction, for a long time, the illness and Robert were united against Robert, and I was – oh yes, I was chopped liver. Robert said, later, that he would rather go through the cancer and its treatment again, than return to life as an active alcoholic. I’ve heard others echo this. With cancer, you know what the enemy is. It’s clear and identifiable. With addiction, the enemy is you.

  *

  He was working like a loon through the period before his surgery. He’d written most of the planned CD: quartet arrangements, including the drop-dead gorgeous theme tune for My Dear I Wanted to Tell You with Jackie on violin and his cousin Diane on cornet, which he recorded in time for it to be used on the audiobook, which was read by Dan Stevens.

  In those days I kept trying to take little films of him on my phone – ‘Because you think I’m going to die,’ he said, and I pretended fairly ineffectively that that wasn’t why. ‘God,’ he said, irritated. ‘You’re at it again. Why don’t you just become the item? I can just see yer …’ warming to his theme ‘… a mobile phone with long blond hair – and little legs …’ he’s smiling now, pleased with himself, making little legs with his fingers ‘… hm … I married an iPhone … I-podded her all night long …’ He falls about laughing at his own joke.

  Days before the operation he recorded his setting of the ee cummings poem, ‘i carry your heart’. He read it aloud, as a guide track for the singer. The beautiful music, and Robert speaking the beautiful words, in his beautiful deep honey-gravel Lancashire voice, days before that voice disappeared. Him saying: I fear no fate, for you are my fate, my sweet.

  Chapter Thirty

  University College London Hospital, 09 June 2010

  Dear Robert

  I hope that this will clarify matters and put a few things into perspective. There is no international consensus for the treatment of oro-pharyngeal cancers but in the UK a significant proportion are treated with chemo/radiotherapy or radiotherapy alone. There are exceptions to this and one of the contra indications to single modality treatment with chemo/radiotherapy is the involvement of bone. Your cancer is large and appears to involve the underlying bone. There is no absolute means of determining bone involvement. The determination [is] based on a combination of clinical appearance and radiology. In this context we feel that combined modality treatment with surgery first followed by radiotherapy or chemo/radiotherapy is most likely to afford the best chance of cure. Surgery is however likely to have a permanent and significant impact on your function on speech and swallow. We cannot ascertain with certainty if bone is involved. We do however have a very high index of clinical suspicion. I have done a literature search. When bone is involved, complete response to radiotherapy is very low …

  Surgery of this magnitude, which would include a tracheostomy, splitting the jaw to access the tumour, resection of the cancer, neck dissection for removal of involved neck glands and reconstruction, is undertaken on an almost weekly basis. We attempt to stratify risk and anticipate any complications by putting a person who is being planned for surgery through a CPEX test. Unfortunately your CPEX tests translate to a very low score and this equates to 18 per cent peri-operative mortality. You are presently undergoing tests to ascertain whether there is a heart or lung component that has contributed to this low CPEX score. This will also inform us as to whether any of the contributing factors can be addressed and optimised.

  If your risk of peri-operative mortality is high, it is likely that the post-operative period will be prolonged and complicated by issues such as wound infection and healing, chest infection and long convalescence.

  This will obviously have significant impact on your ability to have the follow-on radiotherapy. If you do not have the post-operative radiotherapy this may negate the surgery and significantly compromise the chances of a curative treatment. Clearly these are statistical figures and there is still a good chance that you will do well after surgery especially if we can optimise your management.

  If you are deemed not fit for surgery then we will discuss radiotherapy with you. The outcome of radiotherapy is less certain depending on the extent of the cancer and particularly the involvement of underlying bone. As iterated before we cannot ascertain this with certainty. I apologise that I cannot be more specific with numbers and figures and this unfortunately is t
he nature of the cancer disease itself.

  If you proceed with surgery we anticipate you will be in hospital three to four weeks. The major risks with the surgery are peri-operative death, chest infection which occurs in one in five patients, wound infections about one in twenty, return to theatre one in fifty and failure of flap one in twenty. Clearly these are risks that apply to a fitter person and we have to assume that our risks are higher than this.

  I hope that this is useful.

  Kind regards

  Yours sincerely

  Chapter Thirty-One

  Home, June 2010

  When you’re not going to be able to eat solid food because half your throat has been removed and replaced with a pad of flesh from your back, and you can’t really swallow liquid food either because of the risk, if it goes down the wrong way, that either you choke, or a bit of food gets into your lung, festers there and gives you pneumonia (one in five), you can get a tube up your nose. Or if they think it’s all going to go on for a long time, you can get a PEG. It’s an oddly appropriate name: it sounds like a tap in a beer barrel. Short and practical; opening and closing. But it’s just an acronym: percutaneous endoscopic gastrostomy. Robert had his put in on 18 June. They punch a hole in your left side, half-way between nipple and sacroiliac crest, direct into the stomach, and feed the very fine clear flexible tube in through the mouth and down down down and then back out into the world. About five inches of it comes out of the small pink puncture just below the rib. Inside the wall of his flesh there is a bumper which holds it in place, and another, a white triangle, on the outside. You need to keep the site clean. It always looks a little sore. I feared the worst about this but a few months into this regime the kind nutritionist who looked like Barack Obama said he’d never seen a better peg site. This sort of thing can make your day.

  On the end of the peg tube is a small screwy tap type arrangement, with a cap you screw up or unscrew, white plastic, attached by an inbuilt little noose around the tube, so you can’t lose it. You unscrew the cap – well, actually you don’t start there. You start with the plastic bottle of Jevity, the size of a large bottle of cleaning fluid, but squishier and thicker. Jevity is beige, nutritionally balanced, made in the Netherlands, and smells of melted ice cream. It arrives every few weeks in big cardboard boxes. The list of ingredients looks like everything you wouldn’t want to eat even if you were well. It’s clinically approved.

  You take a Giving Set from its plastic wrapper: some lengths of clear plastic tubing, with a big purple screw fitting at one end which goes over the mouth of the bottle of Jevity. There is another plastic fitting in the middle which you plug into the feeding pump, and a pleated bellows arrangement, with attachments and little levers, open here for this and there for that. You open the bottle, screw the purple screw over the opening, hang it up upside down on the special hook. Press press press on the bellows bit to bring the liquid as far as the other end of the tube (‘Shall I do it, darling?’ ‘Would you? Thanks, I’m a bit tired’), press till the tube is nearly full, then plug the bellows into the pump (bit fiddly), make sure the pointy bit is up on the purple plastic thingy; then you unscrew the peg’s cap, the ridges where the feed leaks and lodges and dries on, and screw the end of the tube on to the peg, and then turn the pump on, so it can heave and sigh, all through the nights, pumping measured doses of gunk straight into his belly. When it blocks, which it does, it bleeps, and Robert, full of morphine, sleeps through that so I am soon sleeping again like the mother of a small child. In the morning, if it has worked properly, it needs detaching from the pump, and flushing through. If it hasn’t, it needs swearing at, and I need to try to inject a can of Ensure through it with the big purple plastic syringe, to make up for the overnight feed not working. I loathe and detest the term ‘feed’ in this context. He’s not livestock.

  Medicine also goes through the peg. He takes a lot. He is well ahead on the list of things you have to take to counteract the side effects of the things you have to take, and some of those have their own side effects too. Much of it is not liquid, so there is pounding to be done, in a pestle and mortar. His idea of taking medicine is, ‘Ah I must take my medicine’ – find some medicine – take some. As the new medicine involves morphine this is not so good. So I am in charge of the medicine. I become an alchemist.

  He has realised that the liquid morphine, the oromorph, contains alcohol, and must be refused. He is firm on this. The powdered morphine is powdered in with everything else. We have a small grey stone mortar from his stepmother’s kitchen. One pill – the gabapentin? – leaves a pink residue which sticks to the stone. Capsules can be emptied out, but little flakes of the coating that holds tablets together refuse to be ground, and float around, perilous to the passage of fine granules through the minute eyes of the peg system. The amount of water required to get everything in sometimes makes him sick, which becomes difficult, later, without a throat.

  I hum a little tune: Voltarol, Voltarol, to the tune of ‘Spiderman, Spiderman’.

  Jackie came over and we recorded him reading Dylan Thomas and Yeats, and they chatted. I found I couldn’t really talk.

  Chapter Thirty-Two

  UCLH, Midsummer’s Day 2010

  I dropped him off the night before. Sunday night. He didn’t want me to come up to the ward, so I drew up in the ambulance bay out the front. Off he hobbled with his sticks and his shoulder-bag. The last thing he said was, ‘Everything is going to be all right.’ As was my habit, I believed him – both his intention, and his capacity to know. I had been waiting for him to say something which was worthy of being the last thing I would hear in his real voice, so after he said that, I dashed off.

  Surgery day was 21 June. He went to theatre at 8 a.m. Lola and I decided to give blood – her first time. She got a badge, and I took a photo of her grinning and pointing at the needle into her arm. They gave me a badge too because it turned out it was my twenty-fifth time. Or because when they said, ‘How’s your day going then?’, we told them. The nurse said, ‘Congratulations – you saved a life today.’ I said, ‘Can I choose which one?’

  Lola loved it. They loved her. We ate our biscuits and drank our tea and kind of enjoyed the symbolism.

  I invited everyone who had enquired about him or expressed goodwill over to ours and by 5 p.m. they began to arrive. We ate and drank and played the piano and talked till later than I had been prepared for. Eight, nine in the evening – still light, and me in the garden ringing the Head & Neck Ward, being told he was still in theatre.

  Is that good?

  Yes, they said. Probably.

  The operation involving microsurgery, for which he had been deemed too weak, which would have taken too long, was usually eight or nine hours. This had already taken twelve.

  He came out at ten thirty. ‘Oh he’s fine,’ they said, ‘in the ICU, settled in for the night, it all went well.’ I burst into tears and at that moment my brother came in the garden gate and I howled all over him.

  *

  The next morning I was up there first thing. Robert in his green robe was superb – illuminated! He had a face like a car crash and big metal staples where they’d cut his throat, twice, to get his jaw out, and a tracheostomy and scarlet railways tracks down his side where they’d pushed the flesh and veins up under the skin to rebuild inside his mouth, but his eyes were flashing, intense, merry. He was strong, after all. He had been under for fourteen hours. It went very well. He reacted enormously to everything that was said, pulling on sleeves, demanding to be heard though he could not speak. The tracheostomy plug in his throat looked like the bastard child of a washing machine dial and a baby’s dummy, and made disgusting bubbly snorting noises. The trackline down his side reached almost to his arse. He was battered and swollen, yellow and mauve where he had been painted. They thought he’d need to be in the ICU for two to three days, but he was well enough to leave in twenty-four hours. Record time – he told me so several times, in writing.

  ‘It went im
peccably,’ said the anaesthetist.

  Surgeon Grumpy as Robert called him (as opposed to Surgeon Happy, the other one), came by the next day on the ward, and smiled, and relief was written on him, it was true.

  Impeccably.

  Robert, meanwhile, was brilliant, incandescent, trying to get up and do physiotherapy.

  I had been concerned about the pedicle. In 1917 they hung about, like streamers. I had half thought it would be looping about over his chest, and then in due course they’d cut it away. But no – things had advanced since Gillies’ time: Robert’s was under his skin, lying over his collarbone, looking as if it might pulse, like a hose or a snake. It immediately began to annoy me, like an errant cable left the wrong side of a table leg. I was going to spend the rest of my life wishing they’d threaded it tidily underneath the clavicle.

  I had written of Riley after his surgery, based on contemporary photographs, that his face looked like no man’s land, like sandbags held together with barbed wire. In this too, things were different now. Robert really didn’t look that bad.

  That he couldn’t talk at all was because of the tracheostomy. It was not possible to tell how things would be when that was closed up; meanwhile there was a revolting contraption for sucking phlegm out through it. They’d given him a wipe-off screen device to write on. He wouldn’t shut up. He wrote TELL HER I LOVE HER, and gave it to a nurse, and pointed at me. He was writing a list of things you could do without being able to talk: WALKS BIRDWATCHING MUSIC SHAGGING – WITH YOU. I told him how unbelievably proud and happy I was. He cried, and he wrote I’M ONLY CRYING BECAUSE I MADE YOU HAPPY, and I took a photograph of it, because of believing things more when they are written down. Now I believed that he wanted to make me happy, and for the first time I could see that he always had wanted that, and that shame about not being able to do so was among the many shames which had fuelled his terrible carousel.