by Louisa Young
I emailed them again, sending a jpeg of the military field postcard which gave me the inspiration and the title for my novel, which said:
‘My dear__________
I want to tell you, before any telegram arrives, that I was admitted to 36 Casualty Clearing Station B.E.F. on ____ with a slight/serious wound in my ________.
I am now comfortably in bed with the best of surgeons and sisters to do all that is necessary for me. I will write and tell you how I get on …’
Thank you for your kind messages. You are a lovely family to be in at such a time.
xxx Lou
My mother wrote back:
Oh darlings, how boring, how boring. LOVE LOVE – …
I couldn’t get up the field postcard because ADOBE wanted me to accept God knows what before letting me see it. XXXE
And one sister wrote:
UCH are known for bringing forth wonders like you.
*
Fear of the Day: I fear his voice will go.
Chapter Twenty-Eight
UCLH, Summer 2010
It is an oropharyngeal squamous cell carcinoma. It is T4. T in this context stands for primary tumour; the number classifies extent. In throat cancers T4(a) means the tumour has grown further than the mouth or oropharynx into nearby tissues such as bone (yes), tongue (yes), the sinuses (no) or the skin (no). At least it’s not T4b.
The Princeling had said, ‘throat, neck, tonsil and palate’. It took a while for the concept of one cancer at the junction of four places to make sense to Robert. It became one of those things he couldn’t get, like where his socks were kept. I wondered if it was because of the WKS. But socks don’t matter, and this did. He was telling people he had cancer in four places, i.e. that he was dying, when he wasn’t. ‘Actually,’ they said, ‘he has a more than fifty per cent chance of living for more than five years.’
Personally I see percentages as always fifty–fifty – either he does, or he doesn’t. It doesn’t make any difference what happens to everybody else. The David Bowie song became my earworm: ‘Five years, that all we’ve got …’
I was going to work as usual: writing and researching in the British Library. It is handy for UCLH, and has plenty of open spaces for taking phone calls about appointments for more scans, blood tests, heart tests, kidney-function tests, liver-function tests, lung-function tests, hearing tests, biopsies and echocardiograms. It has large clean lavatory cubicles with quality loo paper: good for crying in. Robert did not cry. He rested and worked at home, and at the end of each day I briefed him on his upcoming engagements. He was bad at these things; I am good at them. I went upstairs to cry on my blue velvet bed. He clumped up after me and said, ‘Are you weeping? There’ll be no sneaky weeping. You want to weep, you weep on me.’
*
Fear of the Day:
I fear he will die and it will take a long time.
*
I emailed Swift:
Hey honey –
I can’t actually bring myself to say this in person now; but I’ll talk to you tomorrow.
They want to operate, pretty soon; take out a section of his jawbone and replace it with a bit of fibula. They’d do it all at once. It’s a twelve-hour operation, with up to five surgeons. He’ll be two weeks in hospital; feeding through tubes etc, then six weeks recovery at home, if all goes well. Maybe some radiotherapy, afterwards. They seem to think this has a pretty good chance of working. He is between aghast and very cheerful, and claims to be most upset about having to give up smoking. I now have a giant bottle of liquid morphine for pain emergencies, which we could have done with at three this morning. I had to show my driving licence, as it’s a controlled substance. I am finding it very tempting already. Robert has asked me to hide it.
I spent £400 in Paul Costello in Amersham. And left a dress to be altered and sent on. Hmm. Grandiose and bankrupting.
Love you. Please stop smoking.
xxxx
sswift wrote:
oh god. I will just keep reading the part that says they think this has a pretty good chance of working.
X
louisayoung wrote:
Good plan. I am feeling quietly optimistic, in a mad way. For how else could one possibly feel? Just mad. Which I don’t fancy.
xxx L
sswift wrote:
That made me laugh.
*
Comfort of the Day: friends. Beth coming round with fish pie. Richard. Jackie. Will. Swift. Deborah. Louis. John, Judi, David, Michelle, Simon. All of you. The delicacy with which the hard times other people had been through equipped them to comfort, help and cheer Robert and me up now.
*
I crashed the car, went to the Library with Lola’s laptop and no phone, and stuck my finger in the blender making soup for him. Spinach & watercress with blood. ‘Extra iron!’ I thought. He couldn’t get solid food past the pain. I put ground almonds and olive oil and cream in everything to fatten him up. I prepared chicken broth and ordered special green nutrition powder from California. I was so scared. I knew I was doing the right things but I still felt I didn’t know what to do. In his pain at night he beat the mattress with his fist – then a few hours later, tough, biting it, he walked into the kitchen smiling and told Lola she looked beautiful.
Once, for a few minutes, I was very angry with him. All the things that could have been different if he had made some different decisions. He continued to smoke. There was no point saying anything.
Fear of the Day: I fear I will shout at him.
*
At each stage it turned out to be worse than they had thought.
His old self-destructive self was still hurtling along its physical trajectory even though – except smoking – he has stopped doing what set it off. The cause was clear: neat spirits and smoking combined; far more dangerous in combination than the sum of their parts. Who knew? He saw a hypnotist (I cried in the car outside) and joined a programme at the chemist.
Haunted by cultural references – headlines, radio stories, lyrics – I earwormed the old country song ‘Too Far Gone’ all week, and spent one long wait at the clinic circling every positive word on the back page of the newspaper. Driving past the hospital that morning I passed a car with the bumper sticker Miracles Happen. So that was nice. That night on the web I found the Oral Cancer Foundation. They put their medical stats as a signature, so I just looked to see survivors, and take joy in the fact of them. Only later did I think: the dead don’t post.
When you are a teenager adults can be invisible, irrelevant, not real. When you are pregnant everyone you notice is pregnant; pushchairs multiply and only families count. Now I look at strangers and think: do you have a cancerous beloved at home? And perhaps they do. The leaflet says two million live with it. Does that mean living with it inside them? Or as I am living, alongside in the same house?
If you remember all the stages of life and all the things that were important, you become a wise, kind and sympathetic person. But while learning, you are someone who crashes the car and bleeds in the soup.
*
Fears of the Day:
1) It metastasises before the surgery
2) He goes through all the treatment and it recurs anyway
3) They won’t be able to operate
4) I’ll drive into a tree.
*
The horror justified self-comfort. I became extravagant. I found myself in a restaurant eating duck while the Isley Brothers sang ‘Summer Breeze’; buying flowers, and thanking God that Robert’s PRS payments and royalties from his workaholic days continued, and that I was self-employed and solvent – I had a book contract with sympathetic publishers and no deadline. I have seen people get through cancer where work is inflexible and money scarce; and I am profoundly grateful that we were not put through that added hell. I was at that stage no stranger to retail therapy. Shopping was not safe. I bought a bed without measuring anything, knowing it probably wouldn’t fit in the back room, and even if it did it
wasn’t big enough for anyone taller than me to sleep on. I thought: but I mustn’t get rid of the old daybed, because Robert may need to sleep on it when he’s iller. I imagined one of those big hospital beds, out of place like a Tardis in the sitting room, with him dying on it, facing north so he can see people when they come in. I felt people should face south when they die, but if a bed faced south in the sitting room the door would be behind their head and people would have to go round … there’s no space … I was wondering about how to arrange the furniture if he died.
I resolved not to take my card around with me. I put the old Ikea daybed on Freecycle, to prove I was not ruled by fear.
*
I genuinely felt I would wake up and it will have been a nightmare. How could it be happening? The roses were beautiful. Days came and went. Lola was revising upstairs, and Robert snoozing on the sofa. I gave him morphine in a spoon. I counted out his drugs, filled a little partitioned box with the doses for when he went out. Diclofenac, paracetamol, vitamin B, thiamine, codeine phosphate. MST – strong morphine, twice daily. Various sprays for his throat. Movicol, laxative to counteract the morphine. Drugs because of drugs. They found a home in a blue straw box Louis gave me that before, I used to keep tea-lights in.
The cancer and its treatment would quite possibly, probably definitely, maybe, leave him unable to eat, or talk, ever again. Him, the piano-playing, food-loving, chain-smoking, heavy-drinking, always-talking runaround who can already no longer run around, drink or play the piano. The word ‘compromised’ came up. Unpredictable, they said. ‘It’s not that simple.’ They didn’t know. And sometimes he moaned, and said: ‘Jesus, even my eye is hurting.’ Or, ‘my tongue’. They would be removing part of his tongue, down the back, the talking and swallowing part, not the sticking-out part. So many things being taken away from him.
I spilt sticky liquid morphine, on the sheets, the floor. There was a drip-stand with bags of liquid food in my house. These were strange new things. The world was changing around me.
For example – there seemed to be nothing in the world now that was not to do with food. Advertisements for food, magazines about food, photographs of food, and food itself. Gleaming tomatoes lounging in piles outside the shops on Uxbridge Road, ranks of chocolate bars in the corner shops, stacks of oranges, little plastic dishes of baklava, tubs of pickle and salad, skewers of fat-dripping kebab. Bunches of herbs waved at him; he tripped over food wrappers in the street; the smells of curry and monosodium glutamate and bakeries and frying chicken dawdled after him as he hobbled down the road. On the radio, entire programmes talked about food; its growing, its cooking, its eating. In the papers, complex descriptions of meals consumed, mouthful by mouthful, thrilling taste by delicious detail. A tormenting ubiquity.
‘How about oysters?’ I said. ‘Easy to eat? Nutritious?’
‘They remind me of what’s going on in my mouth,’ he said. He added cream and chocolate ice cream to a fortified reinforced milkshake-style meal replacement drink, and was sick.
There was a supermarket in the Uxbridge Road called Supreme Food and Wine, which he nicknamed (after it was taken over by a religious family who didn’t sell alcohol) Crap Food and No Wine. This was not so funny a joke any more. Maybe in a week, I thought, I will never hear his voice again. I wondered if there were particular conversations he might like to have, now while he could, and how to suggest it. He became very one-day-at-a-time. He sat happy on the sofa, belly full of soup, looking at the paper, preparing for a bit of composing, working up a song I had admired when he was doodling it on the piano. And he did stop smoking! And Jesus if it was that easy, why the hell did he leave it so late? It seemed that yet again he left it too late to come back whole. Maybe he won’t come back at all, I thought.
But standing on the front doorstep, he smelt the roses, ten feet away. ‘Sort of peppery!’ he said, and he smiled like a kid. He never smelled the roses before. They were Madame Grégoire Staechelin, pink and bounteous, flurries of them tumbling in slow motion. The ones we had piled on to Wayland’s coffin the year before.
His hands no longer smelt of fags and his fingers were less yellow. Already. He said the hypnosis was a load of hippy crap. But he wasn’t complaining about not smoking. That week I earwormed George Jones: ‘Good Year for the Roses’.
One gets used to things very quickly.
*
Fear of the Day: I fear he will live forever dumb and in pain, moaning softly.
Chapter Twenty-Nine
Home, 12 June 2010
I was on the new daybed, which had to come in through the window because no, it didn’t even fit through the front door, let alone up the stairs and into the back room. I was haranguing Robert about how insulting it was that he couldn’t even be arsed to propose to me, after everything I’d done for him, even though he knew perfectly well that I’d never ever say yes because although I am a hopeless romantic we all know I am also a rabid feminist who will never marry a man etc etc. He was rolling his eyes at me, lurching to his unsteady feet and hobbling over to the piano. I continued my rant, along the lines that even if I were ever to marry anybody which I wouldn’t I certainly wouldn’t marry him, not with a bargepole, as he was an ingrate and a pig. He hobbled back, saying, ‘Oh for fuck sake. I was going to take you up to Hampstead Heath and be romantic but as you’re being such a fuckin’ cow, fuckin’ hell fire—’
And then he’s down on one cranky knee, flinging away his sticks as if in receipt of an unlikely miracle, and he’s presenting a tiny octagonal box with tucked into its satin slit a little Victorian diamond ring. ‘Will you fuckin’ marry me then?’
I burst into tears. FUCK FUCK FUCK, I yell. YES, I say, covering my mouth with my hand like a lady on a chaise longue who has just been proposed to. Of course, I say. Oh my God yes. Jesus I love you so much.
We went for lunch at the Italian restaurant, and I put the ring on the tail of a prawn on my spaghetti. It sparkled joyously in the sunlight, among the bits of tomato and parsley.
He had asked Jackie to get the ring for him. I remember her asking, ‘So if you were to have an engagement ring, what kind would you like?’ and me not twigging. Not the tiniest little bit. I remember her saying, ‘You will get married, you two, I’m sure of it’ – and me just not twigging.
*
I made a little film on my phone of him being really pleased with himself. And me. We couldn’t stop laughing. We were going to get married when he felt better. So he had only got round to proposing because of the illness: so what? It was a glory to be snatched from the teeth of … other possibilities. We would have a proper wedding in the country, at the church where my dad was buried: we’d invite everyone and they would all come, all the people we’d known over the past thirty-three years. We’d have the tent, dress, frock-coat, sunshine, all the champagne in the world, heart-stopping love and loveliness. We’d have ‘Come Down, O Love Divine’. I tried on a vaguely traditional wedding dress or two and thought oh no way, it’ll have to be Vivienne Westwood, and gold. Or green. I could go as a superannuated mermaid. He agreed he would shave. Word got round. Cards and flowers arrived. Everybody loves a midlife romance. An ex of his was reported as saying, ‘Well they’re perfect for each other: he’d have anyone, and no one else would have her’ – and we laughed. My mother said, ‘Do it now. Sooner the better.’
*
His CPEX (Cardio-Pulmonary Exercise Testing) improved, but even so because of his existing health problems – the complex, systematic, imaginative and thorough way that alcohol had dismantled him – Robert was deemed potentially too weak to undergo the microsurgery which was the normal thing. The anaesthesia required for an operation of the necessary duration might be too much for him. They spent weeks testing him to see if he’d be strong enough; every test was borderline.
‘Everything about you is difficult,’ the anaesthetist in the floral tea-dress told him, and didn’t know why I laughed. Also, were they all good-looking? Or did they just look good to me,
because they were helping?
Because they didn’t think he’d be strong enough for more than four or five hours of anaesthetic, they were thinking of giving him a replacement jaw of titanium chain – in links like a bicycle chain – instead of a section of his own fibula. This way would be quicker and simpler; the jaw replacement would be ready, waiting, rather than their having to extract it from the patient’s own body. He had, they said, a twenty per cent chance of ‘mortality’.
‘Eighty per cent chance of survival!’ he’d said.
One in five of dying, I thought.
So, he was to have, instead, the old-fashioned surgery. ‘This involves something called a pedicle,’ the surgeon explained.
Oh for God’s sake.
I knew all about pedicles. I had encountered them twenty years before in my biography of my grandmother the sculptor, who had worked with the pioneering reconstructive surgeon Major Harold Gillies, making plaster casts of soldiers’ wounded faces, on which he would then plan out his surgery. And I had spent the past three years intensively with them: My Dear I Wanted to Tell You was all about pedicles. In the novel, Riley Purefoy’s face was rebuilt by Gillies. In 1916, surgeons weren’t able to cut a flap of flesh from one limb and take it to another and sew it in place vein by vein, artery by artery, capillary by capillary, as the tall blond surgeon had done for Robert at Charing Cross in 2004. They hadn’t the time, the anaesthesia, the techniques. Instead, they would cut the flap, but keep it attached to where it came from by a long strip of skin and blood vessels. This strip would naturally roll inwards, so the surgeon would loosely stitch it into a tube, to protect the blood vessels, and keep it all clean. This way, the flap could be moved to wherever it was needed – the longer the tube, the more topographical flexibility there was – and take with it its own blood supply, off which it would live while it settled into place. Then, when by the miracles of nature the network of capillaries from the flap and those from its new site had found each other and joined up, the pedicle – the tube – could be cut free again at the new site end, and split open again to make a strip, and carefully laid and stitched back in place where it had come from. At the Queen’s Hospital (now Queen Mary’s) at Sidcup, where Gillies perfected this surgery on the facially injured of the trenches of the First World War, flaps would be moved along in stages, healing up and being moved on again, bit by bit. The tube pedicle ward was known as Burma, because the men’s faces were hung about with loops of pedicles looking like lianas in a tropical jungle. All this I had written about.
