She recounted comedy-howlers from her own chemo-days: a child, concerned she was overdoing it by constantly receiving visitors, saying ‘Mummy, you should really be upstairs dying’; another child, admonishing her for eating his burnttoast-crusts: ‘Don’t! They’re carcinogenic!’
Then I went to the pub to see Group S who were celebrating the end of the taught course with chips and a lager. For the third time that day I heard myself holding court and describing the steroid energy-rush followed by the Granocyte-induced-crash. ‘You look bloody good on it anyway,’ said one. I’m learning to say thank you to this, on the grounds that it is much nicer to be told you look well (even if it is a lie) than it is to be told you look worn out in the name of honesty.
They were on good form, demob-happily passing on gossip about other groups and students, including at least two course-couples I have taught and had no idea about. Apparently one student called her classroom assistant a lesbian on day one of her teaching practice, then couldn’t understand why the staffroom sent her to Coventry.
I ate a plate of chips, sipped my mineral water, and felt normal for an hour.
On the way out I took a pre-emptive Paracetamol to counter the shooting pains in my back, a repeat, almost to the hour, of how I felt last week. As Tatty says, the Granocyte may keep me alive, but apart from the nausea on the night of my treatments, it is the side effect I have come to dread the most.
On the way I saw Cara and Gina in the deli buying sandwiches – on the way to see me. We sat round the kitchen table. For the first time in months I heard some work-gossip (all of mine is stuck at December 2005, an eon ago) and felt both relieved to be away from it all and alienated at the same time.
I queued in Lloyds the Chemist behind some ladies and their prescriptions. While we stood there in silence – a waiting room kind of silence, for a shop – I began to listen to the inane chatter of the in-house radio station, Lloyds FM. It’s the sort of thing Jimmy Young used to do on Radio Two (‘In a minute, your calls on bowel cancer, meanwhile, here’s Abba’) except it is entirely about health, unleavened by politics or showbiz or sport.
As I listened I learned that there is a shortage of radiologists in the UK. Dr Martin someone from the Royal College of Radiologists (is there one for everything?) was explaining that we just aren’t making enough of them, hence the waiting lists all over the country for people to receive CT and ultrasound scans. Hence the relief in the GP’s face when, on January 20th, my pain undiminished, I asked if, well, he wouldn’t mind recommending me for a private scan. ‘I was just about to suggest the same to you,’ he sighed. ‘Normally I’m reluctant as I never know how people will react. But in your case it’s a good idea. In any case you wouldn’t have been seen for another six weeks, even on the urgent list.’
Friday 17 March
‘What are the side effects like?’ friends ask.
‘Do you really want to know?’
They blink.
The main one they’ve heard about – the main one I had heard about until just over a month ago – is the sickness. This is the one, my performance on the first evening of chemo excepted, that I seem to have escaped most conspicuously. Tatty and the children will tell you, however, that I seem to burp constantly (‘Dad, that really smells!’) and that every time I do I feel as though I might be about to throw up. I haven’t –yet– but for that one night, but it feels as though I’ve reached the point of no return, every time.
So I don’t tell them about that, referring instead, expert that I now am, to ‘the cycle.’
‘It must be very tiring,’ they say.
They are not joking.
This is all to generalise, though.
I’ve noticed subtle shifts in the side effects from cycle 1 to cycle 2, although the general pattern remains just as I have described it.
Cycle 1 side effects:
Night 1. Threw up. Felt sick even afterwards. Felt sick next day but wasn’t.
Experienced the energy rush for the first time. Went into town and ate pizza. Felt:
I can do this.
Very poor sleep patterns. Woke 3 days in a row with an axe-through-the-head-post-drinking-days headache.
Constipation.
Then diarrhoea.
Then diarrhoea again.
A tickly cough leading to lack of sleep. Also leading, or contributing to
Extreme, hit-with-a-cricket-bat, fatigue.
Shivers and shakes and backache.
Shivers and shakes and backache.
Cycle 2 side effects:
Felt sick. Wasn’t. Felt smug.
Mad energy rush. Went into work to hand in sick note (they all said how well I looked).
Got rid of cough (mostly). Slept.
Almost to the hour, the return of the fatigue on the Tuesday after (hereafter known as the Tuesday After).
Muscle ache: back of legs, and in lower right arm.
Diarrhoea.
More diarrhoea.
Even more diarrhoea.
Achy back (no shivers and shakes).
Return of the night sweats.
Hair loss, including beard.
Rich called and described in more detail than I wish I could remember his wee: ‘At night a Burgundy, in the morning a rich Bordeaux’ (he has kidney stones).
We talked about people praying for us. ‘It’s beginning to bounce off me a little,’ he said. ‘I mean, I know they mean it, but, partly it is something to say, to take up the space at the end of a card or phone call. I mean what they don’t say is ‘I am expecting the living God of the Universe to reach into your pain and bless you with his healing touch.’
‘It’s a bit long for a start,’ I said.
‘So instead they say, “I’ll pray for you.”’
Somehow I found this tremendously encouraging. It turns out he’s just been given Blue Like Jazz. I told him to cut to the chase and go to the bit on cancer and war metaphor.
Monday 20 March
A real curiosity in the post this morning: a card, book (The Maker’s Diet: The creator’s plan for optimal health!), leaflet and Healing Scriptures CD from the mother of a friend. It took me a whole minute of looking at her name before realising who it was bombarding me with unasked-for Christian material.
I did not find it helpful. Something about the syntax in sentence 1 of the card aroused my suspicion straight away: ‘I was so sorry to hear about the cancer.’ It isn’t that it is ungrammatical, it is that it isn’t true. What I mean is that it acknowledges my having cancer without really communicating any sorrow that I have it. It’s all in that word ‘the’. ‘I was so sorry to hear about the cancer.’ Not: ‘that you have cancer’; not: ‘that you have been diagnosed with cancer’; not even the euphemistic: ‘about your illness.’ Instead: ‘about the cancer.’ Just: the cancer. Not ‘your cancer’ but ‘the cancer’. Placing it, the cancer, in a kind of possessive-less limbo, as though not attached to or, dare I say it, living in an actual human being, thereby acknowledging its presence, but not acknowledging me. Which is, ironically, to deny both the cancer, with its determined determiner ‘the’, and me at the same time.
The leaflet made me shudder as well: ‘sickness, disease, pain, I resist you in the name of Jesus. You are not the will of God. I enforce the Word of God on you. I will not tolerate you in my life. My days of sickness and disease are over!’ (I’ve just looked back at the prayers either side of this and three out of four of them close with an exclamation mark, too.) Apart from the fact that the days of my disease are not (yet) over; and apart from the war metaphor (enforcing the Word of God); it is the triumphalistic tone of this which I find so unappealing. Imagine you are an old lady being given this by an enthusiastic new vicar; or a man who has just discovered secondaries on his lung, having been clear for three years: what are you supposed to feel if you do not share the leaflet-writer’s certainty that you are cured? Where does this kind of thing leave you? People of faith are made to feel worse by this kind of thing, through the gu
ilt that it induces a) for not getting better, if that happens and b) anxiety and fear for not having ‘resisted’ hard enough. I know my friend’s mother means well, and I know I should be grateful, but I only find it depressing, rather as I find double glazing salesman who ring you during supper depressing. Of course I want to get better, but I am not going to pray prayers that I can’t subscribe to culturally or, for want of a better word, linguistically. It reminds me of what I remember one writer saying in a Guardian piece from last year: ‘Truth starts with syntax.’ This leaflet is not true.
I opened the book, very warily, at random. In a chapter which is a long list of ‘Don’ts’ entitled ‘How to Get Sick: A Post Modern Prescription for Illness’ we are entreated (no. 23) not to ‘Use plastic food storage products, the popular food wraps [nor] re-use plastic drinking bottles,’ ‘Do aerobic exercise’ (no. 17) and ‘Get tattoos’ (no. 10). No. 20, where I opened the page, warns against the dangers of wearing tight underclothing:
Lymph nodes that are compressed or blocked by tight underclothing such as bras or other tight clothing may not allow the lymph system to be properly cleansed. […] Women should not wear bras to bed.
I am so glad I knew that.
Back at the card which accompanies all this, the penultimate line reads ‘Trust Tatti (sic) & the children are all doing well.’ Poor spelling aside, this rather falls between the two stools of thoughtfulness (she remembers that I am not alone and that my cancer has affected all of us) and naïve optimism (on what grounds is that (person-free) trust based? Has she spoken to my consultant?). It is also horribly informal. It is ‘Trust that …’ not that ‘I trust that …’. This is a person I have not seen for over three years and she is writing to me as though we chatted for half an hour on the phone last night.
I haven’t unwrapped my Healing Scriptures CD from its plastic sheath yet. The blurb on the back opens with: ‘Defeat your doubts and receive your healing by allowing the healing power of God’s word to flow through you.’ This assumes a) I have doubts about God’s power/love, b) that I am not allowing him to heal me, the inference of which is that I am to blame and c) that if I don’t defeat my doubts (more war metaphor) I’ll be in a lot of trouble. The CD promises, furthermore, to ‘[give] you powerful promises to stand on for healing.’ I’m sorry, but what does ‘stand on for healing’ mean? Does it mean ‘go on standing’, with the implication that I may have to stand for some time before being healed, i.e. that it will involve lots of effort and hard work on my part; or does it mean, simply, to stand for healing? Which begs the question, why ‘stand’ for healing and not ‘sit’ or ‘collapse on the sofa for healing’ or ‘have a lie down’, which is what I feel like most of the time. Why do I pick up a dreadful whiff of testosterone-fuelled muscular-Christianity from all of these products? And why do so many of us, the mothers of friends included, fall for it?
Later
Have spent the day feeling coldy and tired and demotivated. Watched with huge relief the return, post-Cheltenham Festival, of Will and Grace and Frasier. The Will and Grace I watch, as I always do, in awe of the comic timing and delighting in the sugary overdose of it all. The Frasier was The One Where Niles Hires A Lawyer.
I moved on to the Commonwealth Games, but found I cried though most of it. This is partly because athletics always makes me cry; but I found it happened with the swimming as well. A boy from Exeter has his just won back-to-back silver and now gold in the backstroke. He went, at one time, to Tats’ school, and the swimming club the kids used to go to. ‘He’ll have been shouted at by that bloke in the tracksuit like you were,’ I enthused, but they didn’t seem impressed.
Didn’t really settle to very much. Made a plan to take CDs back to the library, but felt too tired, plus, it is still freezing.
Got a call from nowhere from Bex. She came round later for tea and we nattered over the kitchen table good-naturedly for an hour or so. I went back over the story with her. In one sense it is very old news, old hat, even; in another I cannot believe it is happening to me.
Less Brian Eno today, more of a Syd Barrett, in truth. The post-Floyd, living-with-his-mother-in-Cambridge Barrett: not really a shining crazy diamond, but a slightly overweight middle-aged bloke looking haunted.
Of course, you still slip into war metaphor when you’re not thinking. I saw Vince across the road walking back from dropping of Shim. He called out how are you and I called back: ‘Fighting off a cold.’ ‘But you’ve nothing to fight it off with!’ he shouted.
Tuesday 21 March
First day of Spring, last day before chemo no. 3.
Spent the morning shuffling round the house and blubbing watching the Commonwealth Games. I found the slightest thing set me off, from the former-pupil of Tatty’s school gaining another backstroke record, to the sight of two Kenyan women dominating the 10,000 metres, crossing themselves in ecstasy as they reached the finishing line. Ray came round looking concerned, having spoken to Lucinda who saw me venturing out for fruit as she swept her hedge clippings yesterday. I told him there was nothing he could do, but thanks. I went back into the kitchen to empty the dishwasher then cried all the way through a CD.
At the post office a very odd parcel from Mandy Coe was waiting for me – half a dozen ‘hard-boiled eggs’ in an egg box in bubblewrap. They aren’t real eggs, but nor are they chocolate. I licked one. They are definitely sugar-coated. She says she found them in Suffolk in breaks from workshopping with teachers – one of the gigs I have given up this year. ‘Do you remember these from childhood?’ she says. I don’t. But they are so odd they cheered me up no end.
As did her letter. She’s got friends and family ‘who’ve met cancer’ and gets it exactly right: ‘with just one test or diagnosis you find yourself slipping through a thin partition and suddenly you are outside your old world.’ She says you live somewhere for years, noticing the Ethel Austin and the chip shop, but not the cancer support centre. And it’s just as near to your house. How true.
Her other brilliant image is about the treatment. ‘Imagine your body is an island,’ she says, ‘(not Man or Dogs). There is just one leaf on one tree that’s a bit brown round the edges. And they use a hurricane to blow it away.’ That nails it for me better than anything I’ve seen by anyone. She’s busy preparing a poetry Ms, she says. On this form, she should have no trouble.
Later
I handed Bendy and Tats a hard-boiled egg each before supper. They immediately started licking them, then whacking them on the coffee table. Bendy got hers to open first. ‘Yum, chocolate! Incredibly sugary, but great.’ So now I know. Proof that Mandy was more spoiled as a child than I was. I had thought they were papier-maché and for painting.
Wednesday March 22
Third chemo day.
A quiet day on the ward today: it must have been, as we started a whole hour later and got home at the same time. Or maybe they think I’m built like an ox and just blast me through it in double-quick time.
Nadine did my injections again. She has huge dark brown eyes and is very smiley. ‘I’ll stop gassing in a minute and you can sleep,’ she said, injecting me with Piriton.
We nattered about the drugs like they were fashion accessories. ‘So I know the “C” and the “O” which is really a “V”, I said, trying to impress her, ‘but which is the “H”?’
‘Technically there isn’t an H at all,’ she said.
‘Which means it’d be R-COP instead?’
‘I guess once they thought of CHOP they couldn’t lose it. It kept them amused I guess.’
‘Do you do other chemo regimes?’
‘Oh yes. There’s one called FLAG I do. And FLAG IDA.’
‘They must have such fun dreaming them up.’
‘Gives them something to do, I suppose.’
She asked how Tatty was and about the kids.
‘They’re amazing, considering,’ I said, repeating what I must have said a hundred times in the last two weeks. I warmed to my theme: ‘They’re very matter
of fact about it, really. If they want to talk about it, we do and if they don’t we don’t. We don’t not use the word cancer around them, though. It’s important to be straightforward.’
‘Absolutely, I’m sure you’re right.’
It struck me as the word cancer popped out of my mouth that until then the ward was the only place I’d not heard it used. At the school gate, in the bedroom, round the kitchen table, on street corners, but never on the ward itself.
‘If we do have a moment it’s usually deferred angst,’ Tatty chipped in.
“Where’s-my-jumper-I’m-late-Dad!’ kind of thing,’ I said. ‘Homework is a good one too.’
Nadine laughed.
‘Apparently Shimi’s best friend from school asked him how it was going and all he said was, “We get baked lots of cakes.” Who’s to say that’s not important to him?’
Very little sleep last night, which I spent most of on the sofa. Not from nerves but from this dreadful cough I can’t seem to shake off. They’re taking it seriously, giving me a codeine-based cough mixture and more (and stronger this time) antibiotics.
At around twelve I woke up spluttering as usual and shuffled into the TV room. I couldn’t bring myself to switch it on; it would only have been women’s bowls or the 50m trap shooting.
Thursday 23 March
A lovely morning lying around in the bedroom with Tatty, who has finally been signed off. We nattered and cuddled and I brought her fennel tea and cereal. Then into town for banking errands, buying a mop for the cleaners, and booking in a Specsavers visit for Tats. Then lunch (on the sofas!) at BTP. Yummy avocado salad sandwich (why do I crave this?) and a toasted melty looking panini for T. Cosiness. We flicked through a hi-fi/electronics mag and fantasised over Roberts Digital Radios. ‘Why don’t you get one for your birthday?’ she said. ‘You’ll be getting lots of money.’ Suddenly realised in my bones that I am extremely materialistic, wanting not only a DAB radio but a Howies cycling jacket and Ipod as well. She took me to Fat Face and had success choosing a top and a beanie ‘from the kids’. Found myself lusting over a pair of loafers in the Bally window on the way back. Felt slightly cross with myself.
Love for Now Page 8