Authors: Anthony Wilson
Went to bed early last night. Saw Felicity with Tatty at 5. We began with the letter she’s written to my GP, telling him that
I am in ‘a very good partial remission.’ Which is better than no remission at all. Or relapse. But still not as good as plain old remission on its own.
Quoting the PET scan report she says: ‘There is only very low-grade uptake seen associated with a small amount of retroperitoneal soft tissue abnormality, much more likely to represent sequelae of treatment rather than persistent active disease.’ First we had to get past ‘retroperitoneal’ and ‘sequelae’. I guessed that sequelae meant ‘following on from’ but did not understand what it meant in the sentence. Felicity said it meant that it was more likely that the uptake on the scan was as a result of my treatment, going right back to my biopsy, than the continued presence of cancer cells. Retroperitoneal means the muscle wall which the gut hangs from, roughly speaking. So: there is a bit of soft tissue left, but it’s quite likely it isn’t cancer. This is where it gets interesting, where you find, as Felicity put it, that medicine is not an exact science. And where you find the doctors taking educated guesses, albeit ones with lots of letters after their names.
Essentially they can’t be sure that my cancer has gone. They are pretty sure, but not 100% sure. Which means, actually, I still have cancer. When I spoke to Felicity on the phone she was all for waiting for a bit, doing another PET scan, then blasting me with radiotherapy. Tatty and I wanted to ask if I couldn’t have the radiotherapy sooner than that, given that my disease is/was so aggressive.
Tatty spoke up first and looked distinctly wobbly. I think Felicity hadn’t reckoned on us wanting it over this desperately; nor on the level of anxiety that Tatty displayed. There are all sorts of good reasons, she told us, for not wanting to give me radiotherapy: the potential damage to other organs (e.g. saliva glands in the neck – I thought straight away of John Diamond), the link to problems in the future (e.g. breast cancer – not likely in my case), and the way radiotherapy is
increasingly being cut back on as much as possible (not for reasons of expense) because of complications.
But Tatty pressed on, looking more and more wobbly. To her credit, Felicity listened really well, taking every opportunity to say how pleased she was with my progress and that she would be putting our views very strongly forward at next Wednesday’s MDT.
I’d like to think that we’ll get the green light – ho ho – for some radiotherapy in the next two weeks, with a CT/PET scan sometime around the end of August. It’ll mean the summer hols will be buggered up a bit, but I’d rather have that than a delayed return to work in September.
Speaking of which, Occupational Health have been in touch and are talking about negotiating a ‘graded return’: ‘The most important thing is getting well, not what your colleagues think.’ Hurrah. I don’t want to go back to work on September 1st full-time in any case. Apart from being terrified, I don’t feel up to it. A ‘graded return’ sounds like the right thing. The future has a bit more shape to it, perhaps. As we drove away from the hospital I said to Tats ‘If this summer is buggered up, why don’t we throw some money at Christmas?’ ‘Or next summer?’ she said. ‘We could go to the States.’ ‘Or do what Andy did in Canada,’ I said. ‘Vancouver Island, a bit of camping, then the city. How about it?’
I offered her a drink when we got in, but she didn’t want one. I made do with a San Miguel. It occurs to me, after my hangover on the weekend – Paracetamol at 6 am! – that my resistance to alcohol has been permanently affected by my treatment. First, I find now I can drink again that I can’t resist having one, ha ha. Second, while I feel like drinking a case, I find I am able to have only a single drink without feeling dreadful the morning afterwards. I can see a future of watching other people getting pissed at parties and toasting myself at book launches with Perrier, Raymond Carver style. Still, if that’s what it takes. It’s funny, having cancer. What
was previously unthinkable suddenly becomes quite viable (forgive the pun). Normal, even.
As we sat waiting for Felicity yesterday a woman called Wendy came and sat down with her husband. She immediately burst into tears. She had come from the direction of the ward, or perhaps one of the consulting rooms. ‘I just wish I could die,’ she gasped, collapsing onto a row of soft chairs. ‘All I do all day,’ she said to the auxiliary nurse who had come over to comfort her, ‘is lie down. That’s all I do. All day. For the last fortnight. It’s dreadful.’
As the auxiliary handed her a new supply of cardboard sick-bowls she ran through her list of side effects. Tatty whispered to me: ‘She’s still got her hair, though. And her eyebrows.’ This was true. If we’d been sitting next to her on the bus we wouldn’t have thought of her as a cancer patient at all. But in the Haematology waiting room, reeling off a list of complaints and clearly fatigued, she looked as vulnerable as anyone I’ve sat next to on a drip in a headscarf. As we left Tatty whispered to me again: ‘Thank you for being positive. I couldn’t have put up with that.’
‘I didn’t feel I had a choice,’ I said.
Tatty off work with a dodgy tummy. Spent the morning bringing her marmite toast and peppermint tea, then lying on the bed chatting staring at the ceiling. I tried not to think about going back to work. She picked it up immediately and asked what was on my mind.
I’d just had an email, I said, which I needed to answer yesterday, to order books for my students for next year. We spent the next half an hour pricing the list up from Amazon, titles like
Teaching Fiction Writing at Key Stage 2
. There’s a Ronseal title if I ever saw one. I ought to do one for poetry.
How often have I said that in the last year? Does cancer make me more or less likely to get on with these projects?
Then I told Tatty that I was projecting forward to everyone expecting me to be 100% straight away and that it frightened me. She said that cancer has changed me – forced us all to look at our priorities really clearly. And that I had realised that work wasn’t everything, at least not the everything we are so used to stressing over. ‘If you do lose your job,’ she said, ‘which I doubt, you’re really good at what you do, you know, but if you do, it isn’t the end of the world. You know that now.’
‘I suppose so,’ I said. ‘Being terminally ill with six months to live, that’s the end of the world.’ I paused to look at her. ‘And even then, it’s not.’
‘No, that comes when you’ve gone,’ she said.
A new condition for me to get used to: scoliosis, curvature of the spine. When Felicity was examining me a couple of weeks ago before my PET scan she felt around my lower back for a second. ‘Do you have any back trouble?’ She said. ‘How did you know?’ I said. ‘It’s a bit soft in there,’ she said. ‘I think we need an X-ray of your spine.’
The results came back straight away, but were forgotten in the post-PET discussions. She read them out to me again on Tuesday. ‘So when are you having your next bone density scan?’ I told her it had been four or so years since the last one, so might be due for one soon. ‘It seems to be a bit ad hoc,’ I smiled. ‘Ask your GP then,’ she said.
I went in to see him today. I mentioned the scoliosis, talked him through the PET results, and slipped in that I was still having some pain on my side. He looked surprised, but humoured me with an examination. ‘As you know,’ he said afterwards, ‘my own theory was that your pain came from the pressure of your tumour on your urethra, or on some nerve tissue. So I did expect it to go away. Your kidney is fine, by the way. I suggest we wait and see. And if it persists or gets worse then come back. Of course.’ He looked at
me a bit blankly, reddening slightly. ‘Of course, this means, this might mean, I mean, that it was coincidence we found it at all. Because you weren’t ill to speak of, symptoms-wise, I mean. It’s one of those funny things.’
World Cup quarter-final day. All to play for.
Everyone in town or at the beach. Shim on the annual dads-and-kids weekend, this year a bargain-basement deal in a field near the surf, after last year’s
£
200/person effort which I boycotted. I’m meeting Tats and Bendy in a minute for a posh lunch to say well done for her report and for the prize the school have awarded her for ‘achievement’.
Further proof of life having moved on whilst I have been ill came later that evening. We were on the way out to supper, suddenly panicking into clothes like Hugh Grant at the beginning of
Four Weddings and a Funeral
(‘Fuck! Fuck! Shit!’) having lost all sense of time during the penalties with Portugal. I put an M&S Toad in the Hole in the oven, switched the alarm clock on for when it needed to come out, and kissed her on the forehead. ‘You’ll be OK then? We’re on my mobile if you need us.’
As we walked up the road to Stella’s house I remembered those first days at Hazel’s, our child-minder in Brixton, when Merenna would only be calmed down by being placed into the arms of Adam, Hazel’s husband, every day for two weeks. And here she was, being left alone for the first time of an evening.
When we came back it was as though she were both child and babysitter. The child had gone to bed but the babysitter was still up. She had closed the curtains, had her laptop out, and was watching a rap video on the Hits channel. ‘Hi Dad.’
On a plate on the table lay the empty Toad in the Hole foil tray. Next to it, the box of four chocolate cream éclairs we’d bought her for pudding. She had eaten three of them. ‘I’ll go to bed in a minute,’ she said. ‘I’m just finishing watching this.’
As I drove Tats into town earlier I found myself saying to her that I didn’t think there was going to be a champagne-popping moment when having cancer will cease. What I predict (and what I said) is that after the (almost certain) radiotherapy there’ll be a scan and it will say I am pretty much OK. But it won’t be conclusive. They will tell me to go away, to go back to work, and to come back for a check sometime before Christmas. And when I’ve had that check, which will be inconclusive, I’ll be told the same. That check will be OK. ‘No signs of activity’, they will say. This time they will tell me to come back in six months. That check will be OK as well. ‘See you in another six months,’ they will say. And so it will go on. There won’t be a moment, like getting a book contract, or the letter confirming you have been awarded your PhD, when the project will come to an end. Not for five years, at the earliest. The hardest moment to take will be the one in late summer when they tell me that ‘for now, we’ll just have to wait and see’ which means they won’t know if they’ve got rid of it or not, not for sure, not definitely.
Like red buses, cancer-stories come and go, then reappear in twos. Yesterday was a two-in-a-row day. It began, between World-Cup-Exit-phone-ins, with 5 Live’s coverage of the Race for Life in Chiswick. They had an actor from
The Bill
who has been in remission for a little while, and a man whose job it is to train the people who answer the phones at Cancer Research.
It was the most sensible and sensitive discussion, in the right sense of the word, that I have heard on the subject since being diagnosed. This is high praise: I had made yet another bet with myself that within five seconds I’d be ringing in to
complain at their used of war imagery. Perhaps it was because they had someone on who had actually been through the treatment; maybe it was the influence of a man whose job is to pay attention to the exact words we use to describe feelings about the disease. Whatever it was, it worked.
Most people who ring up, said the trainer man, just want advice on how to be able to talk about it. ‘And these are not always relations,’ he said, ‘like husbands, wives, brothers and so on. Many of them are just ordinary friends and acquaintances. And all they want is someone to tell them that it’s OK, that we all find cancer difficult and frightening.’ Is this worth the licence fee? I think it is.
The presenter went on: ‘And in that sense, perhaps, cancer is perhaps one of our remaining taboos. Dave, how did you deal with it?’
Dave the actor said two things to this. First, that you need a very robust sense of humour. And that as a cancer patient you want things both ways: the simultaneous desire to be left alone
and
to talk about it. His advice to those close to cancer-patients (no one used the word ‘sufferers’) was to take each conversation as it came and not to expect too much. ‘If they want to offload on you, let them. And if all they want is to gossip and talk about the football, that’s great too.’ This was also spot on. It cheered me enormously to listen to such a common sense conversation, but saddened me almost the second it was over that it had not gone on for longer (‘And now over to Sally for the traffic …’) and was so rare of its kind: a mainstream radio programme talking about a disease which affects one-in-three of us with calmness, wit and honesty.
Later on, Tats was watching a recorded
Without a Trace
on video. I missed it, preferring instead to read to Shim the latest instalment of Charlie Higson’s junior James Bond book. Much later still she asked into the darkness whether I was still awake. I could tell she was crying. ‘What is it?’
‘It’s that
Without a Trace
you missed.’ (I had seen a minute of it, so knew it concerned the disappearance of a woman with breast cancer who had been given two months to live.)
‘What about it? Was it bad?’
‘It’s just that. It’s just that she disappeared because she felt so strongly that no one had really listened to her while she had been ill, that they hadn’t let her be who she was through it all. I was worried that I’d been like that to you.’
In spite of my protestations to the absolute contrary, I wasn’t convinced that I had persuaded her of the strength, courage and hope she has given me. If I ever do get to look back on this experience with gratitude, it is the image of Tatty smiling at me as I blinked awake on the ward, after a treatment, saying ‘Hello darling. You looked so peaceful while you slept,’ which I will treasure most closely.