Tuesday, 29 January 2008


Herceptin has been my bag for close on three years now. When opium was first synthesised, I believe they called the new drug heroin because, to the patients that used it to numb pain, it had a heroic quality; and in its purest form, uncut by flour or cement dust or milk formula or whatever else the crooks who deal it use, I expect it still has. Herceptin, anyway, is my heroine, at least for now.

I have my treatment, by intravenous infusion, every three weeks at the haematology clinic in the Royal Cornwall Hospital. The nursing team there are heroines of a different sort, battling with infinite patience against the unseen powers who make so many stupid, arbitrary and ever more impractical administrative decisions at this and so many other NHS hospitals in which the management culture is now a terrible blight. It's a culture predicated on a wish to curse, not cure. The latest decision thought up by this dictatorial crew of outrageously overpaid bureaucrats (whether or not they've got MBAs - and in a cancer clinic, who gives a shit about MBAs?) is to overbook the clinics and take on ever increasing numbers of chemotherapy and blood transfusion patients, without increasing the number of nursing staff or seats in the treatment rooms. By what rationale of time and motion or other redundant studies they see this working, God only knows; but for the cancer patients waiting for chairs, it means a longer wait; and for the oncology nurses, who start at 8am and work till six (or when the last late patient has finished...), it means no lunch or tea breaks. To perform their jobs as well as they do, in such circumstances, with such unfailing patience and friendliness and professionalism, it goes without saying that this team of nurses - Jo, Alice, Rachel, Yvonne, Cass and all their colleagues are something beyond exceptional.

Yesterday (thanks to Management), I waited forty minutes for my chair in the treatment room (and I was lucky - I got a recliner) and was cannulated at twenty to two by poor Alice, who hadn't had a break since clocking on. This time last year, I was having problems with my veins, it taking sometimes as many as 11 cannulation attempts (which means 11 pricks in the arm and hand) to get a line in; but, strangely enough, it's got better since last summer and now I don't worry about it nearly as much as I used to. It's not that the cannulation is particularly painful: a 'sharp scratch' is indeed all it is; it's the anticipation (will they spear a vein this time? will it be over soon?) that causes the most stress. I must now have had close to two hundred 'sharp scratches' - including all the spikes for blood tests, etc, and all in my long-suffering left arm and hand, the right one (my 'operated side') being out of bounds because of risk of lymphodema. I haven't got lymphodema though, and sometimes, it has to be said, they go into the veins on the right. They use the smallest gauge of needle (a paediatric cannula), which is fine for chemo drugs, including Herceptin, but not for CT scans, which require the contrast injection to be given at a faster infusion. But I have found a way around this, like today, by getting the radiographers to put the contrast in through my treatment (paediatric) cannula at a lower pressure. This meant I got away with only two sharp scratches this week - Alice's one failed attempt in my hand and her other successful 'scratch' infusing both Herceptin yesterday and revolting, metal-tasting contrast dye this morning, when they scanned my chest and abdomen.

That's treatment over now for the next four weeks because I am taking a holiday in Budapest on 10 Feb. It's allowed to take the occasional holiday from Herceptin treatment, but what this means in terms of future appointments is that my schedule will be out of synch - and this means more 'sharp scratches'. Usually, I manage to synch a three weekly Herceptin infusion with a three monthly clinic appointment, which means I can get away with one cannulation for both infusion and the dreaded blood test, it being more difficult to get blood out of me than Herceptin into me. But Budapest is more than worth that extra sharp scratch; and four weeks - a whole four weeks - away from the hospital, after all this time, feels like a liberation!

Friday, 25 January 2008

The Illusion of Pain

If the first and lowest operation of pain shatters the illusion that all is well, the second shatters the illusion that what we have, whether good or bad in itself, is our own and enough for us.

C.S Lewis, The Problem of Pain

For the three years I've been living with this condition I have experienced mostly human kindness and compassion, and this has been at its very best. At its very worst, I've had people avoiding me - and I can live without those people. But last Saturday, when I explained to the woman who recently moved to the house at the bottom of my garden and was berating me about the sight of my builders' heap - only exposed by her illegal felling of some ancient trees - that I was (a) not aware that the builder had left an old loo seat there, in view of her window; and (b) that I was not up to clearing the large items slipping out from under the pile of leaves because I was living with secondary cancer and tired easily, her response was:


There then followed several abusive fishwife style charges, too silly and petty to mention here, although they left me reeling in amazement. My tendency (a bad one, since it always puts me on the wrong foot) is to feel sorry for such people because they are well, let's say, uneducated LOCAL people (Cornish peasants...) who probably haven't had a quarter of my advantages, etc, etc. But that's politically incorrect of me. Probably illegal even to THINK such things these days...(I hold my hand up, guvnor...) Probably some mental illness there - even if its only a pathological lack of compassion; but isn't that a definition of a psychopath? Oh God - and at the bottom of the garden, too!

Thing is, though, if you live with cancer, you can pretty much live with anything.

Friday, 4 January 2008


I have just posted three extracts from a treatment chronicle I began about a year ago in order to try and make sense of (or impose some kind of order on through the medium of words) my diagnosis and life-changing new status as Person Living With Secondary Breast Cancer. I have survived this treatment, and this disease, for more than three years since my 'official' diagnosis in March 05, because I let the lump fester a good three months before finally plucking up the courage to visit my GP after a 'fortifying' sojurn in a Budapest spa (see Crab and Fishes 1....). All I can say on this point is, Go, go, go to the doctor - whatever your fears, whatever your circumstances, because it was really my circumstances, rather than fear, that prevented me taking that first step onto what I already recognised as my road to Compiegne. Except, unlike poor queen Marie-Antoinette, I kept my head and lived to tell the tale. In fact, once war has been declared on it, cancer is a strangely fearless condition, really. The fear, in my case, was all for my daughter. She was just ten then, and I could not bear the spectre of social services coming in to take her away from me if I needed to go into hospital. But I needn't have feared that. It was all sorted out in the end.

So, in case anyone is interested, or might like to take some heart from my experience, the retrospective postings of this journey on this blog are:

Crab and Fishes 1
The Regimen
Hair and Other Losses

Hair and other losses

My hair came out after the second dose of FEC. I don’t know which of the three drugs was responsible for my baldness, or whether all three were equally responsible. I favour cyclophosphomide because it sounds like a poison, a weed-killer, perhaps; whereas of the other two, fluoricil could be a tooth-whitener, and epirubicin a jewel-red fruit squash that turns pee pink for a day. But they are all universally toxic to cells (like the sun which shines on good and evil alike); and epirubicin especially, when combined with trastuzamab (Herceptin) is toxic to the heart.
‘If you do arrest,’ Thea told me cheerfully, ‘we can always resussitate you.’
And if I arrested, what would happen to my daughter then? She was staying with my mother in the north while I embarked upon the nasty chemo regimen. I was unsure of how it would affect me, and consequently, my ability to care for my child while I recovered from each dose of poisoning. So I let her go, when my mother put it to me as the only option, without thinking too much about what it would mean to lose my little girl, because thinking about it too much would have made it quite impossible for me to wave her off at the station and go home to an empty house, bereft for the first time in ten years of my only child’s presence, her sweetness and her light. When I waved her off, I still had hair, auburn hair, down to my shoulders, although it badly wanted cutting. I had battled with Cara about it throughout our holiday in Budapest. She wanted me to let it grow.
The breast nurse, Janet, had told me about the cold cap, a ridiculous-looking blue helmet that is meant to minimise the risk of hair-loss through chemotherapy. It maximises the treatment time, however, because it needs to be worn for a bit before the drugs are infused, during the infusion, and, I think, for a short time afterwards. My objective was to spend as little time at the hospital as was possible in order to spend as much time as was left to me with my daughter. My hair was a small price to pay for this precious commodity of time, newly precious to me because I had wasted so much of it. Cara, I hoped, would understand.
‘And anyway, it grows back in six months,’ Thea said, ever cheerful, ever sure. ‘The wig lady’s here today. You can get a wig on the NHS. Why don’t I introduce you?’
On the advice of the wig lady, who clearly knew about these things, I went for a pre-chemo crop at an expensive salon with a chair that massaged my back while my hair was being washed and my head massaged. This was the only visit I have ever made to a hairdressers’ when I didn’t feel intimidated by the experience, made all the more enjoyable because the stylist was the first person I had chatted with in over two weeks who did not know I had cancer. A haircut usually lasts me about six weeks, although I figured that, this time, instead of the hair growing out of its style, it would probably fall out altogether, something I neglected to tell the stylist as I tipped her. My next cut was waiting in a box at home: a Raquel Welch ‘pixie’ wig, with a steel brush to groom it and its own special shampoo and conditioning bottles. I hoped it would make Cara laugh, because seeing her cry again, as she cried when she learnt of my diagnosis, throwing herself down on the hardwood living room floor and howling with an existential despair, while my mother went to phone a friend in the other room, and I stood there helplessly, was more than I could bear. That my daughter should come to know despair at the age of ten, because of me, caused me far more pain and grief than the disease itself. How I would get through this, I didn’t know. But I knew that I would get through it. I have breast cancer, I said to myself, as I opened my eyes the morning after diagnosis, knowing that it was going to be like this every morning now, for the rest of my life, ever walking beside me. I have breast cancer, but I will get through it. It was like a mantra.

The Regimen

July seventh, 2005. The haematology outpatient clinic at Royal Cornwall Hospital, Treliske. There are about sixteen patients, all hooked up to electric pumps. Half are getting blood transfusions; the rest, myself included, are having chemotherapy. But because of the news broadcast that is panicking us all -- clinicians, patients, nurses and auxiliaries, some of whom have relatives in London, some, like me, who have spent half their lives in the city and could walk that fateful bus route through Tavistock Square with their eyes closed, we seem to have blurred the boundary that usually marks off sufferers from non-sufferers (or those who may long-suffer us). We are all equal today, uniformly terrorised by the pressing understanding of our own mortality which has jumped out of the TV set in the treatment room and shaken us all to the teeth.. As the decimated bus in Tavistock Square is framed up close, we are all, this minute, entering an even playing field of fear and horror. This doesn’t make it any easier, of course; but it does seem to make our situations less exclusive, at least for today.
When I received my diagnosis, two weeks after Cara and I returned from the annual trip to the spa, and a mere twelve days after the GP had referred me to The Mermaid Centre (‘a one-stop shop,’ she said, ‘so at least if there’s anything nasty under there you’ll know the same day’), I thought I was falling off the edge of the world. The world hadn’t ended -- far from it; it was rather that I was being thrown out of it, and not with a bang but a whimper. At the same time, I had the slightly more uplifting thought that all this was an illusion, like the series of tests I had had that morning at The Mermaid Centre: mammogram, ultrasound, needle aspiration, cone biopsy. A series of illusions, one after the other. Throughout these tests, I was thinking of the work I had brought with me: a series of creative writing assignments done by external students at Exeter University, mostly of indifferent quality, and almost as tedious to endure as all these clinical procedures. But, increasingly, I grew all too aware of my surroundings (grounding, I think, is the pop psychologists’ term). I became aware of the radiographer’s blank expression and increasing taciturnity, contrasted with the warm touch of the clinic nurse who came in to assist the kindly, German radiologist who performed the ultrasound. ‘You are right,’ she told me, ‘moving the sensor to the top of my right breast, beneath the collar bone. ‘It’s nothing to do with these superficial skin infections.’
Then the surgeon arrived. ‘I’m Alistair,’ he said. ‘And this is going to hurt you, sweetheart. When I was a junior doctor, I never hurt anybody – but I didn’t get enough material and then the consultant had to go and hurt them. Now that’s me.’
He punched a fine needle into the area below my collar bone identified by Kirsten, the radiologist, and drew out his material. It didn’t hurt a bit, and I told him so. I liked his utter frankness and his Sean Connery-esque Scottish burr.
‘I’ll be back in half an hour,’ he said, grinning at me in a non-committal fashion. The Mermaid Centre has a cytologist on site – which is helpful to those lonely women in the consulting rooms, cowering in fear and anticipation. Needless to say, it was a long thirty minutes, in which I was hyper-aware of the white walls, the half drawn blind, the light breeze blowing in the through the window, the basin on the wall, the MRSA-fighting hand-wash, the needle mark on my chest, which was starting to throb a little, though still it did not hurt.
Alistair came back into the room with a woman dressed informally in a soft grey sweatshirt and trousers. It’s bad, I thought, because they’re bringing in the counsellor.
Alistair sat down next to me on the consulting couch and put his arm around my shoulders. ‘You don’t need me to tell you what it is, do you?’ he said. ‘You know what it is?’
I nodded. ‘The thing is,’ I said, ‘I’ve got a daughter. She’s ten. I’m a lone parent.’
‘And have you any relatives near by?’
‘She has,’ I said. ‘She has her father’s relatives in Hayle. Her father isn’t with us. He isn’t well.’
‘Are they decent people?’ Alistair said. ‘Can you trust them?’
I didn’t know what to reply. I had never had to trust them before – I had never had to trust anybody with Cara’s care. There had been only me and her: a symbiosis.
‘Well this is our problem now,’ Alistair said. ‘My problem, as well as yours, for the next five years. I’ve been to see my colleague, Duncan, just down the corridor there.’ He pointed through the window to what appeared to me as a blank wall. ‘The way we’re going to treat it is to give you some chemotherapy, over eighteen weeks. Duncan will tell you about all that. Then we’ll give you a month off in August before doing a mastectomy. I’d want my wife to have it,’ he added defensively, as though anticipating some protest on my part.
‘And who will do that operation?’ I asked. ‘Will you do it?’
‘Who the fuck else would do it?’ he said. I laughed.
‘You’re a four-letter man,’ I said. ‘I like that.’
He nodded. ‘Then we’ll give you some radiotherapy. You know, when I first came to this hospital, I had to send my fucking patients up to Plymouth for their radiotherapy. Couldn’t be doing with that. This is Janet, the breast care nurse,’ he said, indicating the lady in grey and getting up. ‘She can fill you in. Duncan, will see you tomorrow, nine o’clock, at The Sunrise Centre.’
‘Clinical Oncology, just down the corridor there. That’s where you’ll have the radiotherapy.’
I stared through the window at that blank wall. Alistair went out and Janet hovered. There was a box of tissues on the chair at the foot of the bed. I think she was waiting for me to cry.

Duncan drew me a diagram on a piece of paper and referred to the dots and dashes on it as ‘zapping the buggers’.
‘I’ve got plenty of weapons in my armoury,’ he said. ‘There’s a drug called Taxotere, one of the nastiest poisons we’ve got. We might start with that, although it might make you feel really rotten for a bit. The idea is to shrink the tumour down so we can operate.’
‘Alistair, you mean?’ I said. ‘Why can’t he do it now?’
‘The tumour’s too close to the chest wall,’ he said gently. ‘I’m proposing six doses of chemotherapy to see where that takes us. But before we start, I want to send you for a couple of tests – a chest X-ray. A CT scan and a bone scan, just so I can see what I am dealing with from the very outset. I wouldn’t want to get six months down the line and find we’ve missed something.’
‘OK. And when will this chemotherapy start?’
‘Next week probably.’ He smiled. ‘Oh, and if you agree, we’d like to send some of your biopsy tissue away for testing. It’s for a clinical trial we’re running, to see if you might be suitable for it.’
‘That’s fine,’ I said. ‘It’s no good to me.’
So I signed the consent papers, went for the scans, and looked forward to having a few days’ off from all this, over the week end, before Duncan zapped me with his monstrous regimen.
But he wanted me back before then. He had left a message with the bone scanner to call me over to The Sunrise Centre again. I knew why – not where, exactly, but why.
This time, Duncan had both his research nurse, Thea, with him and another breast care nurse, called Josephine. It’s bad, I thought. Very bad.
‘The bone scan was clear,’ Duncan opened. ‘But unfortunately, the CT scan showed some spots on your lungs.’
‘Metastases,’ I said, smugly citing the clinical word, because words are my job. My whole life, I thought, I’ve been obsessed with what Alistair might qualify as fucking words. And what are words, anyway? Just fancy parcels of received meaning.
‘You mean it’s spread? You told me before that with these drugs – this Taxotere, for instance, and all the rest, the surgery and the radiotherapy, that you could eradicate it, more or less, and I’d have the same chances as any other woman my age, I mean for living to old age…’
‘We can’t cure it,’ Thea said. ‘But we can treat it.’
‘Alistair can’t operate on my lungs?’
‘No,’ said Josephine. ‘It wouldn’t be possible.’
I looked Duncan in the eye. ‘I’m not bothered for myself,’ I said. ‘I mean, I’ve had an interesting life.’ A rich and exciting life by anybody’s standards. Running round the world like a headless chicken, interviewing people for American TV, so that people in the red-necked mid-West could switch on and gawp at those backward Europeans. I had a much more important life now, here in Cornwall, a life that was all my daughter’s.
‘Will I live to see my daughter grow up?’ I asked Duncan, rather fiercely.
‘Yes,’ he said, emphatically. ‘Yes. We’re talking years, not months.’

Years with cancer. I tried not to think how many. I had had forty six years without it; the number I had to look forward to with it was an unknown quantity. But then so is any calculation pertaining to the future, an unknown quantity rubbed in hard on 7 July 2005, in front of the TV set in the haematology clinic. Hooked up to drips, we patients are as desperate to hang on to life as the healthy people caring for us, terrorised by the news broadcast. I am hanging onto life by a line containing the product of outstanding medical research: the monoclonal antibody, trastuzamab (Herceptin). It costs twelve hundred pounds a dose, and Duncan, to whom I am eternally indebted, has put it into my treatment regimen, a mixture of three cytotoxic chemotherapy drugs, a hefty dose of steroids, which send me up high as a kite, and something the nurses in here call ’your cover’ – which has so far stopped me from being sick. I am hanging onto life here in the clinic in Cornwall, while up in London, a group of deeply disaffected, morally moribund, and mortally stupid young Islamo-fascists are blowing themselves to pieces and destroying, willy-nilly, innocent bystanders who happened to get in the way. A bit like cancer cells, really, spreading out in an undercover crab-like motion, seeking parasitically to block out and destroy all that is life-enhancing and life-affirming – all that is life. An anti-culture, a terrible blight.
But I have survived it – up to this point in time, which is the only point any of us really have. I am equal to it.

I am still here.

Crab and Fishes 1

March fourth, 2005, my forty-sixth birthday. I am fighting with my ten-year old daughter for the right to go topless in a Budapest spa.
This place is absolutely not about the body beautiful. Breasts come in all shapes and sizes here, except the uniform. There is not the slightest whiff of the footballer’s wife or silicone babe in the ladies’ pools and massage booths of the once grand and glamorous Gellert Hotel. Today, in fact, is pensioners’ day, and the local grannies bob about like pickled walnuts in the cloudy, sulphurous water, naked except for the well-bleached linen modesty aprons that flap uselessly about above their grizzled pubes. No one is paying the smallest bit of attention to my own well-lived in body, I assure my furiously embarrassed little girl; but I wonder, all the same, as I slip down my straps and climb into the icy plunge if it is noticeable, this strange, slight puckering on my right breast above a strange hard lump I felt there about six weeks before Christmas. There is only room for two in the plunge, and the other incumbent, a naked Austrian woman, looks challengingly at me, to see if I can stick it out. I last about ten seconds.
Cara is waiting for me back in the thermal, not realising that it is her whom the Hungarian grannies are talking about, for skulking too long in the 38 Celsius bath. I swim up to her (another contravention of the rules) and, still defiantly topless, submerge what my new Austrian friend would call my heart and lungs chakra in the dense hot water, hoping that its curative properties will disperse this strange contusion that is keeping me awake. It is possible to reach a state of beatific torpor in these baths, judging from the expressions of some of the women: a transcendent state, where past and present converge in great white hopes for the future. Most of them have been in here for at least an hour, which is fifty minutes longer than the maximum time recommended at this temperature. Cara is rosy as a picture-book apple, and I hate to imagine what the hot spring water is doing for my own face, though it is doing wonders for the circulation in my legs. Watching the clock, fixed high on the wall of green and silverfish grey majolica tiles, I wait out another five minutes before a white-coated masseuse, a relic from Communist times from the look and sound of her, comes to the steps to shout out a number at me. She wants some other hapless tourist, I expect, who doesn’t understand Hungarian; and I briefly consider taking her place, but am frightened of the close scrutiny I might attract perched up on the couch, beneath the harsh bright lights and expert, pummelling hands. There is a hospital on the floor above the spa, purporting to treat cardio-vascular problems. We pass it, Cara and I, as we ride up in the antique lift of the grand old hotel, in which we are thankfully staying, because to go to the effort of drying and dressing and turning out onto the cold March streets after the enervating sensation of the baths must be punishing indeed. A couple of ‘patients’ in hotel dressing gowns get on at the hospital floor; but Cara and I do not get out. Cardio-vascular problems, I guess, are not my trouble.
It is still there, back up in our room, as I peel off my swimsuit again beneath the same sulphurous waters of the bathroom shower. In fact, there is possibly more of it, for besides the hard, tight lump and the puckering, there is now what looks like a slight patch of inflammation beneath my collar bone. The mirror is steaming up, and my image is starting to melt, like one of the damned in hell in Michaelangelo’s Sistine frescoes; but I can see it in my mind’s eye.
It is still there.
It is always there.
It isn’t going away.