To Guy and Jemima’s party last night. It was one of those extremely rare occasions where you sit in someone’s garden and feel warm the whole time. Also, that everyone you wanted to see turned up, plus that you could hear them talk.
Tats and I made a bit of an encampment on some chairs on a little patio halfway down Guy and Jemima’s garden with Vic and Tamsin, Becca, and variously, Adam Olsen, Jasper Hampson and Marco and Juliette.
Some people were there who we hadn’t seen for months, or only in passing at Becca and James Alexander’s Bond-do.
Rarely, it was also a party where you actually talk about stuff, in other words not just schools and house prices. (I wonder if, having gone through all of this, I will ever want to again.)
Later, once we’d put our jumpers on and Guy had lit the lamps, Jasper Hampson asked me if the experience of having cancer had changed what I thought about God. I was suddenly aware of everyone hanging on my every word. ‘Well, it hasn’t made me angry,’ I said, to his raised eyebrows. Then I heard myself say: ‘I made a decision really early on not to go down the avenue of asking “why me?” Partly this is because you never get an answer – there isn’t one, is there? – and partly because you can quickly get lost in a vortex of self-pity, and go mad, basically.’ I blinked at him. ‘So I suppose I was being pragmatic, really.’
I could feel myself warming to my theme. ‘There is one thing: I find that when I pray – if I do – my prayers are much more simple than before, like a child’s. Much more “Help me! Help me!” or “Thank you! Thank you!” than anything else, as if the clutter has been cleared away.’
‘We’re here to learn from you,’ Tamsin said then. So I said: ‘OK, the things which have irritated me most are people saying “I know you’ll be fine” and “You’ve got to stay positive/be strong/fight it.” Becca was quickest off the mark here. “Exactly,” she said. “How dare they play God with you?” They don’t know. None of us does. And as for “being strong”, well that’s just bollocks. Being strong is, I imagine, the last thing you feel like.’
Here is another thing I have learned: there are three types of people in the world: the kind who say ‘I’ll ring you and come and visit’, then don’t; the kind who say ‘I’ll ring you and come and visit,’ then do; the kind who make no promises at all, but still ring and come and visit. I know which category every single one of my friends and colleagues belong to.
I have three eyelashes left on each eye.
Monday 12 June
Bendy off school again, making sure she gets back to 100%.
I woke today with a feeling I haven’t had since – ooh – December: a hangover. The slightest of self-inflicted wounds, it was, unmistakably, a little bit of a throbber. Two-and-a-half glasses but it undoubtedly made me think two things: maybe I am getting better after all; and, conversely, perhaps I should cut back a little – if my body is sending me the signal that it is not ready yet to resume normal Sunday evening behaviour.
Perversely, the irritation of the headache aside, it gave me the most odd feeling of euphoria. It was as though I’d had a brief taste of just being well, well again.
My song of the year? k.d. lang’s version of ‘A Case of You’. A song of communion and possession, release and letting go, I suddenly had the feeling, listening to it the other day, that it was actually a hymn to chemotherapy. In terms of treatment I have had more than the case of wine the song specifies, but here I am, still on my feet: it finished me off, bent double over the sink in the kitchen, turtle doves flitting in the garden, everything flushed with life.
Results
Tuesday 13 June
Scan results day.
Woke convinced that the cancer has spread to my bones. Have persuaded myself that the return of the pain in my side is not psychosomatic, the obvious explanation, but proof of the true virulence of my disease. Sat in the bath and felt very glum. In half an hour Tats will be here to pick me up. Have been useless all morning, not able to concentrate on a thing. Last night the same. Watched the first half of Italy vs. Ghana in an empty house. Jay rang. He said ‘Are you cured-from-cancer yet?’ which is at least better than opening with ‘Hi, cancer-guy!’ (To be fair to him, he hasn’t said this in a while.) Sort of concentrated on what he had to say, but not really. Watched a recording of some World Cup highlights. Impressed by the Czech Republic. Their manager looks like Roman Polanski.
Later
Have been in to see Felicity Carr. Got soaked on the way with Tats, who decided as the heavens opened that ‘the walk would take our mind off things.’
As we walked in to the unit we saw Felicity in the corridor. I knew from her body language that the news would be so-so. It’s more than that: it’s good.
My tumour has shrunk by a further 5%, but this isn’t conclusive enough to say game over. It’s more or less what they expected: ‘A mass of 1 × 2 cm’ is left, which may or may not be scar tissue. The PET scan I was promised a few weeks ago is already booked for Monday, at Mount Vernon of all places, a stone’s throw from where I grew up. This will tell us if there’s anything living left: if there is I’ll have a course of 3 weeks’ radiotherapy before the summer hols. If not, we’re done. Then the three-monthly checks.
Felicity and Carol were cheery, confident, but not really nailing colours to the mast. I heard myself begin one question with ‘I know it’s hard for you to say, but …’ which is as good as not expecting an answer.
What do I feel? What did I expect?
The really interesting part of the exchange with Felicity was, as ever, when she referred to knowledge she’d had all along, but not actually disclosed. Specifically, she described my original tumour-size as ‘huge’. No one has described it thus until now. (For the record, ‘huge’ is always how I imagined it, even after a radiologist pooh-poohed it with the words ‘we get one’s the size of grapefruits: four-by-five’s nothing.’) The policy of gradual disclosure? Yes. The policy of managing disappointment? That would be unfair. Reading between the lines I think she was saying: ‘Given how big your tumour was, and how aggressive your cancer is, we’re very satisfied to have come this far. Now we need to make sure we can remove the rest of it.’ In football speak this translates as ‘We would have taken removing 95% of it before half-time.’
It’s a beautiful sunny evening.
But I still have cancer.
All of this was put into perspective later as we sat waiting for an X-ray on my back (Felicity wondered if my pain is referred from my vertebrae). There was a lady there being comforted by a hospital chaplain.
In a voice we couldn’t help hearing she told him how her husband had ‘had a turn which we thought was a stroke.’ She described how she left him to walk round the block with the dog. When she got back she found him sprawled on the patio with blood pouring out of his head. After they got him to hospital they found a massive tumour in his brain, with further shadows on his lungs. They had had no idea.
I had seen him being wheeled in as I emerged from my changing cubicle. He was jolly but completely incoherent. ‘And now,’ his wife sniffed, ‘we’ll have no Maurice.’
As I walked back to my cubicle after the X-ray I heard the priest administering the last rights to him in the corridor.
Duncan took my hickman line out earlier.
While I was in there Tatty talked to Dave, a patient we’ve seen on the wards on and off since the day I was originally given my scan-result-bad-news.
He’s deep into his second round of E-SHAP, the relapse treatment I had been briefly promised.
He was diagnosed with lymphoma over 2 years ago, had CHOP-R and then recovered. He’s done one round of E-SHAP already, but the tumour has shrunk insufficiently for them to move onto the bone marrow transplant. He’ll be in every day this week, and the pump he wears over his shoulder, cased in what Tatty calls ‘the handbag’, gives him a further week of zapping while he’s at home. He never takes it off. A week ago they kept him in a whole week when his hickman line got infected.
/> Before him, he told Tatty, his father had had the same cancer, and his father before him. They both died from it. His grandmother, too.
Wednesday 14 June
Shim and I stared at the ceiling talking again last night.
‘Dad, why do you need another scan?’
‘Well, this one can tell if there’s any living cells on my cancer or not.’
‘And what if there is?’
‘If there is, then I’ll have three weeks of radiotherapy. It’s not as bad as chemotherapy, apparently, it’s like having sunburn.’
‘How is it like that?’
‘They shoot radioactivity at you and it leaves your skin a bit burned, I suppose.’
‘Does it have a green light?’
‘Yup.’
‘What, like a laser gun?’
‘Yup. Actually, no, it’s not like a laser gun.’
‘What’s it like then?’
‘Well, a gun, kind of, a machine, I mean. Which shoots radioactivity at me.’
‘Can they use them in wars?’
‘No, and anyway, they wouldn’t be much use because it’s not like a bullet, which wounds you instantly. Radioactivity takes time.’
‘So it wounds you then?’
‘Well, a little, but it gets rid of the cancer more, or what’s left of it anyway.’
‘And how can this scan tell if there’s anything left?’
‘Don’t know really. It just can, that’s all. They told me that often with my kind of cancer there’s a lump left at the end. Usually it’s just dead.’
‘Dad, would you rather have a million pounds or be cured from cancer?’
‘Be cured from cancer.’
‘Wouldn’t you want the money?’
‘No, I want to be well again.’
‘But couldn’t the money help make you better?’
‘Not necessarily. And anyway, I trust the NHS.’
‘Is the NHS making you better?’
‘Yes. It is.’
‘But wouldn’t you want the money?’
‘What’s the point of having a million quid if you’re not well enough to enjoy it?’
‘Do you pray every night?’
‘No, not every night. Do you?’
‘Most nights. I ask God to make you better and to help mum with her work.’
‘I pray a bit in the day. Short prayers, like: “Please God, make me better, Amen.”’
‘Is that all you say?’
‘It’s all I need to say.’
I keep going back over Tuesday’s events. Felicity was upbeat about only one thing, as I remember, my return to work: ‘You’ll want to get back to your life again.’ I didn’t really want to hear this; I’ve got very used to drifting through my days and long not to have to relinquish them.
They have moved my stem cell harvest as well. Karl rang the day after (he’s back, looking well, full of banter) to say he and Felicity had had a chat and felt that I’d have a better chance of producing enough cells if they waited till September. I took it at face value, but couldn’t help wondering if their chat had also touched on the possibility of me needing to have radiotherapy in a couple of week’s time, hence the delay of the harvest. I felt it was his way of saying more treatment was probable, rather than possible. Hence Felicity’s rather determined effort not to appear too definite on Tuesday.
Have felt very flat since. Listless. I do drift through the days now. A bit of email. A bit of reading. A text. And all the time thinking when will it be over, can’t it be over yet?
Yesterday Shim told me before going out to tennis that the Express & Echo came to interview him and the other kids at school for Father’s Day. He told me: ‘I said the best thing about you was talking to you on my way to school and even though you’re really ill you still come with me.’
In the mirror today I noticed something I haven’t seen since February: a single black nasal hair, curling round the edge of my left nostril. I looked up at my eyebrows. Next to the half dozen or so wiry old stragglers, a thin line of new growth, about a millimetre in length, in a perfect arc along the pale trench where my eyebrow used to be. Eyelashes too. Next to my three remaining ones, tiny little lashes, almost invisible, now rim my eyes.
I’m shaving every other day now, the growth on my chin as coarse as Desperate Dan’s. When I wet my face in preparation I feel as though I am pushing iron filings around my cheeks.
Tuesday 20 June
My favourite World Cup quote so far: Florent Malouda, the French midfielder, speaking after his piles operation: ‘All my troubles are behind me now …’
Wednesday 21 June
Phoned up Granny on her 100th birthday and we all sang to her. I hope she heard it. After calling me Julian she said ‘The thing is, I feel surrounded by love. I’m sure it’s what you’ve been feeling as well.’
Granny never says much to me, but always seems to get to the point straight away. Already feeling nervous about the weekend away at Lymington with everyone.
I can hear the conversations now:
‘Anthony, so good to see you. How are you?’
‘I’m fine.’
‘But how are you really?’
PET stands for ‘Positron Emission Tomography’. I quote from the Mount Vernon leaflet:
It uses radioactive substances to look at the way organs work in a unique way. Most of the PET tests performed at Mount Vernon include injection of FDG, a relative of glucose. The scanner looks at cross sections through the body, so the resultant images may be compared directly with the multislice CT or MRI scans performed in the department or elsewhere.
It omits to say that the scan is performed by the grumpiest man in the universe.
The man in the white coat obviously had a taxi waiting for him outside, or perhaps the FBI, so keen was he to get me down the corridor.
As we entered the room – more like a cupboard – for my injection I asked if I could go to the toilet. ‘Well, as quick as you can, please, we are running behind, you know.’
‘It never takes that long,’ I tried to assure him.
As I settled onto the bed for the shot, he began making excuses for the delay without the crucial ingredients of a smile or an apology.
He is the first person since January not to say ‘sharp scratch’ as a formality when placing a needle in my vein.
‘What’s that?’ I said, nodding at the transparent cylinder he was taking out of a blue metal box with radioactive stickers.
‘Oh, that’s your injection.’
‘But what’s that thing? Around it?’
‘Well, it’s a radioactive material we’re injecting you with.’ he said, as if speaking to a six-year-old, ‘And that protects us as we inject you.’
‘Very clever.’
‘Indeed.’
‘How much is in there?’
He sighed. He obviously isn’t used to six-year-olds.
‘About half-a-mill.’ A flicker of a smile crossed his face.
Suddenly we were done.
‘You’ve brought your book, I see, but I don’t want you reading just yet. I want you to lie down and finish drinking this water.’
He handed me a plastic beaker, filled to the 300 ml mark, and a cup.
Then he vanished, presumably to tell the taxi driver he had a room full of patients to see.
After ten minutes I was shown into another room/cupboard where I was allowed to read. I was asked to take off my watch. After twenty minutes I was asked to ‘empty my bladder’ then shown into the PET room by a very smiley woman in another white coat who made me comfortable on the familiar ironing board.
The PET-board is even longer than a CT one, with arm rests above your head. She placed a pillow on there ‘so they don’t dig in’, and one under my head. ‘It takes a bit longer than CT, you see.’ She produced a wedge-shaped piece of hard foam, to go in the space under my knees, placed a white hospital blanket over my legs and tummy, and strapped some white flaps of ribbed material, which had bee
n hanging off the ironing board, across my waist. ‘To give us a good picture,’ she smiled. ‘Right, are you comfortable, Mr Wilson?’
‘Very.’
‘One last thing, could you undo your zip and lower your shorts to your knees, so the metal isn’t picked up?’
‘That’s lovely.’ She smiled again. ‘The thing to remember is to keep as still as possible. There’s no special breathing involved, and no more injections. Just try and relax. It takes twenty to twenty-five minutes.’
The main difference between PET and CT is the size of the polos. If a CT scan is one giant polo, PET is three. This makes it more like a tunnel. I was glad of the rug they gave me; it was chilly in there. I spent most of the time with my eyes closed trying to remember my Alexander Technique from twelve years ago in Clapham High Street.
Once again, like a good episode of Dr Who, it felt simultaneously utterly cutting edge and as though it had been made for 10p.
The ironing board slides you in and a loud whooshing noise happens. Then you slide out the other end, for about a second, before going back in. The machine goes: ‘Beeeeeeeg-shshshe.’ In the same direction it slides you halfway back out then stops. For five minutes you lie there, trying to separate your vertebrae without moving a muscle and wondering if they have all gone off for a coffee. Then it whirrs into action, sliding you six inches into the tube, where it stops. Another five minutes passes. You go six inches the other way. It goes on like this for another fifteen minutes, backwards and forwards, at which point you are about to nod off, so completely are your vertebrae relaxed.
Love for Now Page 16