There are new males in our house. The bulging-eyed ones, Scott, Virgil and Allan, entered my life at the same time as Matt, the healthcare-at-home nurse, who comes round every third Tuesday these days to hook me up to a plastic bag that drips Herceptin into my veins. He is a huge man, Matt, who wears a single gold earring, and talks of things such as “sharps bins” - in which you dispose of your used needles - and about how male nurses used to “fly” in the NHS, but “don’t fit the public profile any more”.
Matt arrives in a family-sized car on the Tuesdays he treats me. I’m not getting this service because I’m a private patient - after their first few doses of Herceptin, all patients are being given the drug at home. Treating women on their own couches saves money: no hospital bed costs, and - practically sale values these - there’s no VAT on the drugs either when all this happens at home, I learn.
It’s so easy. One week Matt hooks me up to the drip while I finish writing a piece about Barbara Clark, the nurse who threatened the government with the European court of human rights unless she could have Herceptin on the NHS. “Hold on one sec,” Clark says when I phone her, “I’ve got Patricia Hewitt on the other line.”
“It’s because it’s breast cancer,” Matt says, when I wonder out loud why the government responded so quickly to the Herceptin campaign. “Breast cancer’s the one that gets the attention - not like bowel cancer: you know, English people don’t like to talk about bowels.”
“It’s the way the government works these days,” adds Anthony, multi-tasking as a pundit, while he builds Spiderman Lego on the floor to keep our son from coming to sit on my lap while I try to type with Matt’s interesting tubing now growing out of my wrist. “These days it’s all responding to single issues, without any overall strategy. There’s an election looming and they’ll say, ‘See, look how quickly we acted on Herceptin.’”
Clark tells me - and this is news - that Hewitt says she has now persuaded Roche, the manufacturer of Herceptin, to provide half the funding the NHS will need to provide for women across the country to be tested for Her-2 tumours: the sort that produce the protein Her-2, and grow faster and are more likely to recur than other cancers. Herceptin is increasing the life expectancy of women with Her-2 breast cancer by 52%. “I admire what you’ve done,” the women said to each other on the phone.
Against Matt’s massive frame, the medical paraphernalia look like trinkets: the stand for the drip, the cardboard box in which the drug is sealed with heavy tape, the yellow toolbox in which he keeps his other equipment. He plays water polo, so he’s fantastically fit, but he considers himself too large so he wants to lose weight, and his wife would like it too. You find out stuff about guys when you’re alone in your living room with them and they’re sticking needles up your arm.
There is a whole new etiquette - to me, anyway - involved in this home treatment. I remember Dr Ostler, the oncologist, asking me during my very first chemotherapy consultation, almost two years ago now, whether I had any questions. And I said, “Yes, what do you do while you’re having the treatment? You said it can take all day. Is it OK to watch DVDs?”
“Uh,” Dr Ostler replied, looking a little quizzical, “sure, if you like. Though there aren’t DVD players, I think there’s just a regular TV in the room. But most people just chat to the nurse.” Huh, I remember thinking, not me. I’m not making conversation, I’m going to get as much distraction into that room as I can. But the thing is that what seems fine in a hospital room - looking out for number one - is just too rude on home turf. You’re in your living room, attached by see-through tubing to a plastic bag dripping liquid into your veins, a visit to the loo is out of the question, as is popping out to the kitchen to make a cup of tea. It is conversation or a particularly uncomfortable kind of silence.
But that, so far, is the only side-effect of Herceptin I can record. Herceptin is chemotherapy, pushed in through the veins, but it is a completely different experience from the first-generation chemo drugs I had last year. I don’t feel sick, I don’t take cocktails of pills to counteract symptoms, it’s just 40 minutes or so on a drip.
So it isn’t the clear, see-through drug that keeps me from sleeping. It’s the fish. It starts the first night. We are out when they arrive and the children put them on the kitchen table with a note, “From Angela (six exclamation marks); 4 your son’s birthday (eight exclamation marks and a smiley face).”
Something about them seems wrong as I head up to bed, and throughout the night I don’t sleep. I keep going back downstairs then trudging up again to say, “Anthony, I’m sure they’re not supposed to be gasping for air like that - I think they’re suffocating. Oh please, WAKE UP!”
It is the earliest moments of what will become an obsession. Three days later I’m at Maidenhead Aquatics, the local live-fish emporium, describing symptoms. “You can’t keep goldfish in something that size,” the guy is saying. His manner is laconic, like he’s heard it all before, and he doesn’t care that much anyhow. Not for the first time this year, I feel my age acutely. The last time I kept goldfish they lived in glass bowls about the size of a cabbage. And we think medicine’s come a long way in the past 20 years. I return home with a hospital-room-sized fish tank, complete with fluorescent lighting, its own oxygen system and a planting scheme.
None of it helps. I’m nearly half-way through my year’s course of Herceptin, the countrywide campaign to get all local health trusts to pay for the drug has been largely successful, Matt has tightened three holes on his belt, he informs me, but I can’t keep three goldfish in good health in the most luxurious of conditions. And now, of course, Scott, the yellow one, the ugly one, has cancer. Or, at least, unexplained red bruising appearing through his skin, or scales or whatever it’s called.
It is a lesson for me - recorder of the ways of medical people - to be on the other side. I’m not the patient, but the one fighting to keep the bastards breathing. And it has completely filled my head, both waking and sleeping (I have a recurring goldfish dream these nights).
Not only has this new mission driven into obscurity any concern with my own mortality, it has even given me a sense of perspective about the rejection letters in which I’m currently wading over my book proposal - of which by far my favourite one so far, says: “As you know, the breast-cancer memoir is a crowded market.” Finding myself yet again squatting, still as death, before the fish tank, trying to see whether Scott is, perhaps, just sleeping, I hear the words of the rejection letters playing through my head, and what I think is, “Yes! Hurrah! Hallelujah for us. The breast cancer memoir is a crowded market.” Because fish, you know, don’t write
18 March 2021: this article has been edited to remove some personal information.
