Love for Now

by Anthony Wilson

  Last night we lay in bed reading the literature on the study I’m being invited on. Its title is ‘A Multicentre randomised clinical trial comparing Rituximab and CHOP given every 14 days with Rituximab and CHOP given every 21 days for the treatment of patients with newly diagnosed diffuse large B-cell non-Hodgkin’s lymphoma.’ Pithy. Acronym: ‘R-CHOP 14 vs. 21’. Basically they want to know if the life chances are better if they nuke you every two weeks, compared to the more standard three.

  Even if I’m in the trial, I still may get it every three weeks, as they have to have a control group. And it’s a computer that picks me, just like on Goal of the Month.

  It’s a chilling list of side effects:

  sore mouth

  diarrhoea (mild)

  nausea and vomiting

  low blood count (increased risk of bleeding and infection)

  loss of head and body hair

  numbness or tingling sensation in hands and feet only

  Well, not so chilling actually. But that’s just the CHOP effects. Rituximab takes it to a whole new level:

  fever

  chills

  headache

  achy muscles and joints

  itching

  redness of skin

  nausea and mild drop in blood pressure

  Most of these go after the first treatment – phew – or start to decrease. They were at pains to tell me if the side effects are really bad, then they have drugs for those too. I pick up my first patch of anti-uric-acid tablets today.

  The thing which scares me most is knowing that to get better I am going to have to feel shit for a while: a long tunnel approaching, the sides of which your headlights don’t fully illuminate.

  18 February

  Sitting propped up in bed while Tatty plays with her new mobile. There’s a lot to be grateful for. Wes and Allie and baby Olivia passed through last night with fizz and hugs and banter. And finally a good phone call, Gill, the Research Nurse at Haematology, saying yes I have been accepted onto the trial and it will be every two weeks instead of every three, making the treatment more intense, but shorter. We got the diary out last night and I put luminous green C’s and R’s on the days of treatment and recovery, two weeks apart. If all goes well the chemotherapy (CHOP) finishes on 2nd May and the Rituximab on 30 May.

  On the way back from hospital from our meeting with Gill we passed an old-school electricity station on a side alley, with yellow warning signs of flashing lightning. Next to it, in plain black felt tip, another sign in clear handwriting: ‘The Door to the Other Life.’

  ‘Weird,’ said Tatty.

  ‘How did they know?’ I said.

  Gill said the hair might come back curly and a different colour.

  ‘As log as it isn’t red,’ I said.

  ‘You never know,’ she deadpanned.

  Tatty describes the Haematology unit as like being in the business class waiting room at an airport. It’s very hushed, with curvy walls of different colours, a yellow one meeting a blue, and the chairs are a kind of mottled pink which probably goes under the name of ‘frosted heather’. The magazines are better quality, too: no Heat or Angler’s Monthly; it’s all Country Living and SAGA. I was reading the latter as we were called in for our first chat with Felicity. It was an interview with Ned Sherrin, who said the three essentials of life were food, drink, and taxis. The best thing about growing old, he said, was ‘slaying the beast of sexual desire’.

  There’s a café in the waiting room. You get a real china mug and carrot cake ‘homemade by our volunteers’. There is a lot of touching of arms and laughter. The nurse who saw me yesterday made small-talk with a grey haired lady (a former patient in for a check-up, I’d guess) for fully five minutes, two yards away from where we sat, never once losing interest or eye contact. Karl, exuding positivity and cheeriness, bounded in at one point and made a joke about her not needing makeup because she looked so young.

  Gill let us ask questions (mostly Tatty, as I had gone a bit blank), then talked through the implications of the trial. I can pull out at any time; and it all remains completely confidential. The main things to clear up were that I won’t be spending Wednesday night in the ward; and that I am allowed to continue to drink.

  ‘Of course, you may find after a while you don’t want to. Some people just lose their taste for it.’

  ‘OK.’

  ‘Or their taste altogether,’ she said.

  They will want me to drink 2–3 litres of water a day, to flush out the drugs once it has started work on the tumour. And my fruit consumption will have to go up, to avoid constipation. If I go two days ‘without going’ I am to call them. Ditto if my temperature goes over 38 °C, day or night. There’s a long list of numbers I am going to become extremely familiar with. The main givens are hair loss and lethargy. ‘It’s very possible you will be knocked out a bit,’ she said.

  Later Robyn and Rory are coming round to drink with us and eat beef casserole (in that order). Robyn saw Tats in the street today and said plainly ‘Prepare him to feel rubbish, I did.’ Even though the length of treatment is shorter than six months, it does frighten the shit out of me, the idea of entering the tunnel voluntarily, with barely a speck of light at the end of it.

  Tatty has been reading the leaflet on NHL to me. It says by 2025 lymphoma will be as common as breast, lung, skin and colon cancer. It is increasing in Europe more than the ‘developing world’ and in the UK grows by 4% a year.

  I said: ‘For the first time in my life I’m ahead of the crowd.’

  19 February

  A good evening last night with Robyn and Rory and Paul and Sally. Lots of banter, laughter, and alcohol. Bruschetta in the sitting room with fizz and olives, Bourguignon with mash, then Sally’s brownies and cream. They all caught the vibe brilliantly, with Paul brandishing his own bottle of pop as he came in. We talked, like all middle class parents, about schools; and as Rory and I always seem to at some level, about Monkton, but without bitterness. It was good having Robyn there. She was quite clear about the horrors awaiting me, without once being morbid: ‘They are basically going to poison you and you’re going to feel crap.’

  We left the debris in the kitchen at half-midnight, then collapsed. I woke at 3, then 6, remaining awake for half an hour to an hour, before conking out till about 9. Feeling pretty shattered, increasingly so, esp. in the evenings. Someone said tonight that I must write it all down. ‘It’s a question of staying awake,’ I replied, mindful of what Felicity Carr had said to me about how I would have begun to feel ‘quite unwell’ had they not found it when they did. I like the understatement here. Also, as in her ‘pretty rough time’ to describe the effects of chemo. She’s been lovely, sparkly, and honest, her remarks like some sort of code you can only interpret by thinking of the worst thing she might be saying, then letting that be the subtext.

  20 February

  A shattering day.

  Woke up, for the first time since being in hospital earlier in January, feeling achey, stiff, as if I hadn’t slept at all. The pattern at the moment seems to be: drop off, then around 3, or 4, wake up for a bit, fall off again, wake up for the loo, then wake more fully between 5 and 6, dropping off again around 6.30, just as Tatty wakes up and the day begins. ‘I’m awake if you want to talk,’ she says into the darkness, waking me properly.

  A rawness in the wind today, a day for hat and gloves, in spite of the feeble sun. Get used to this? I don’t want to.

  21 February

  What does cancer do? It takes away your children’s hobbies. Shimi had already had a row with Tats about going swimming with a cold, about how Daddy’s white blood cells are going to come down and that I was going to need to stay healthy. Having had no success, he tried me, in the middle of trying to clear my desk of the last pressing work emails. I turned to him and said firmly that he would receive absolutely no sympathy, should his cough get worse. The same look of panic welled up in his eyes once again. Then I turned back to my emails, withdrawing eye
contact completely, and he telephoned Sam to say when should they meet up at the pool.

  Part of me really admires his obstinacy, I have to admit it.

  This is not the worst moment so far. For that we thank church.

  Two minutes before the service I was asked if they could pray for me. Out of politeness and surprise I said that would be fine. But I forgot to tell Tatty and the children. I do not think I can forgive myself the look of wild panic in Shimi’s eyes when he realised it would happen and there was no turning back. Merenna said later the worst bit was the line about ‘the family facing this terrible time’. ‘They couldn’t even be bothered to use our real names,’ she said.

  Vicky has arrived to look after us on my first chemo day tomorrow. She bore flowers from Non, who apologises they are all white, which in Austria would be unforgivable, because white is for death.

  ‘I would never have noticed,’ I said.

  A fragment from supper with the gang on Saturday: Robyn holding forth entertainingly about research into chemotherapy starting after the First World War, when they noticed that gassing troops in the trenches actually alleviated certain symptoms or illnesses some of them had. I had no idea of this little-known tale. ‘They basically realised that poisoning people could have beneficial effects. That’s where the drugs found in much chemotherapy first got used,’ she said.

  The other little-known fact of the evening, from her knowledge of National Trust properties, is that, because they are looked after so well, they use NT yew trees in many of the drugs that make up chemo-type cocktails. ‘So you’ll be poisoned by high-quality yew clippings from Devon,’ she giggled.

  Chemotherapy

  22 February

  First day of chemo.

  We got to the hospital early and waited, looking at but not really seeing the magazines, including the ironically titled Devon Life.

  In the way that the world divides into people who instinctively save or kill spiders, ignore or make tea for their builder, and support either the red or the blue team on the pitch, I now know of a less spoken of club: those who have had, or have not had, chemotherapy.

  My image of it until today was that a doctor wired you up to a vat of chemicals, walked away and left you to it. It’s much more intimate than that. And, being my first time, slower, too.

  First there is the wait to check that the ‘script’ (hospital jargon for internal prescription) is both present and correct. Mine was neither. First Nadine, politely, and then Karl, with a flourish of Anglo-Saxon, phoned up the pharmacy. Karl winked at us with a grin while he swore at them. Putting the phone down he said ‘The trouble with the NHS is that all the wankers in it work in pharmacy. Right then, Anthony. I think you’re ready to start being poisoned.’

  Everyone in the room laughed.

  He gets away with it because he has been through it himself.

  In the shorter wait that remained, Nadine clothed herself in her ‘blues’, protective clothing worn over the ones she had on already, including gloves, headgear like a shower-cap, and a mask.

  ‘What are those for?’ I asked.

  She hesitated for a second. ‘Well, as you know, you know, it’s pretty poisonous stuff we’re giving you. We wouldn’t want it going anywhere. If we spilled any we’d have to close the whole ward down. It would take a whole day to clean up.’

  ‘They’re that nasty are they?’

  ‘They are indeed.’

  And the subject was closed.

  I was ushered into a large green reclining armchair. A pillow was placed under my arm and my blood taken. Nadine poured onto the table next to me twenty tiny cherry red capsules and a beaker of milk to wash them down with.

  ‘Milk?’ I said.

  ‘They’re your steroids. You’re supposed to take them with food, but we find a glass of milk’s just as good. You take twenty of these each day for the next five days, first thing in the morning.’

  ‘At breakfast?’

  ‘That’s right, steroids for breakfast.’

  As I began swallowing them down a large package arrived, wrapped in voluminous amounts of protective plastic packaging. Nadine swivelled to Karl and read him the label out loud. After each line she paused, while he also read it, then he too read each item, my name, address, date of birth and hospital number out loud, followed by the litany of the drugs they were about to inject into me: Cylcophosphamide, Hydroxy-daunorubicin and Oncovin.

  Next Nadine tipped out two Paracetamol, handing me a beaker of water.

  ‘What’s this for?’ I said. ‘I haven’t got a headache.’

  ‘Oh, we find it helps people when we start the injections. It takes the pain away.’

  ‘Pain?’

  ‘Pain, yes. In your arms.’

  ‘Right.’

  She began attaching the first needle.

  ‘But before anything else, we give you one of these as well, to take the edge of it all.’

  ‘What is it?’

  ‘Piriton.’

  ‘The antihistamine? Like for hay fever?’

  ‘Like for hay fever, yes.’

  ‘What’s it do?’

  ‘Sends you away with the fairies, basically.’

  I looked at her.

  ‘This isn’t going to be fun, is it?’

  To her credit, she held my eye without flinching. ‘No, my dear, it isn’t.’

  24 February

  Yesterday was raw, sleet in the air, trees black with wet against the grey sky. Rawness everywhere. Today it is trying to snow and Shimi has been for a toboggan on the moor with Sam.

  We spent the day being just the two of us, mooching at home, lunch in town, shopping, then back for supper and a vid. Merenna and Shimi out the whole day, with Vix, being treated. Found I had energy, so used it.

  Went to Zizzi’s, for a very good pizza, an asparagus special with mozzarella etc. for Tats. Nattered about my family, who seem to want hourly updates and are more than keen to come down at every opportunity. Slight tension in the air at the house today because of it, not because Tatty and I disagree, but because we do agree and it’s really my call to make and I don’t want to upset them.

  What they won’t know until we tell them is that Tatty is an inch away from being signed off with stress; that the phone does not stop ringing; that Merenna is viral/post-viral and is not better yet, despite having had two weeks off; and that we just want to go on being normal. I certainly don’t want them coming down the day of the treatment and watch me being injected. For one thing, it’ll be painful for them, another, boring. If I suddenly get ill, then yes, please, come, otherwise can you just come for the day and possibly break the journey with Rich in Bath? It sounds awful even thinking it, let alone writing it down. But it is the truth, and we have to tell it.

  Am being a good boy, eating my fruit and drinking my water and not worrying about my calories, as Nadine said. Lunch today from Nat Thomas (10 points for no dishes to return): tortilla wraps with grated cheese, refried beans, guacamole and sour cream. ‘The best we’ve had so far’, pronounced Tats.

  Lots of funny phone calls. Janet in tears to Tats, giving advice about how to deal with relatives after her own sister died so quickly, then saying let’s go for a drink. A collector’s item from Hannah, on ansaphone, ‘trying to be chipper’ and sounding like death, not surprisingly as she has flu. I wish if they felt crap they would rather not assume I’d like to share in it. A good one from James Bradley, who always uses the right biological words and gives me answers for names and drugs before I’ve dragged them from memory. Don’t think he was ready for me to confess how much my wee smells, but he seemed to have an explanation: ‘That’ll be your kidneys and liver excreting your [scientific term] so that your body doesn’t [scientific verb] an [scientific noun].’ ‘Right. Thanks.’

  Becca Alexander popped in ‘on a double yellow’ as we were finishing lunch. She’s been to see her reflexologist, who has lent me a plastic wallet of alternative guff about Native American Indian methods of treating
cancer etc., all of it badly photocopied. It came with a photograph-card of the NT gardens at Heligan, with an instruction ‘to return them to me as soon as you have finished with them as I don’t have any other copies.’ That’ll be today, then.

  People do what they do. Reacting and acting, I think, as much for themselves as they do for you. The poets are all amazing, ‘putting out healing vibes into the universe’, some of them even promising prayers. The neighbours all offer ‘anything they can do’.

  Two lovely letters, one from an old school friend acknowledging the uselessness of offering ‘anything we can do’ from Jersey; and the other from Amy, offering to sit and be with me and drink coffee, give a lift, whatever. A letter of presence and absence. As James Bradley put it ‘I’m a space person. Or as I sometimes say, a sociable introvert.’ The rarest of people seem to have pulled this trick off so far.

  Today at the doctors with Bendy waiting for her appointment with the nurse, a memory of our old neighbour Cyril in Brixton. His take on Beckett’s Endgame, having watched an actor-neighbour playing the part of Clov, was that it was like watching a play in an old people’s home, with all its references to painkillers.

  An old lady staggered in today who was pure Beckett. She began talking randomly to the woman opposite her.

  ‘Was I here yesterday?’