There are a lot of rules after a stem-cell transplant. Rules about food, rules about visiting, rules about medicines and pills, bloods every day, obs every hour: blood pressure, blood oxygen, pulse, temperature. Nutritionists, physiotherapists, orderlies come in and out, regular and persistent as the tide. Nurses. Registrars. Junior doctors with stethoscopes, and the consultant with the iPhone torch. Plastic aprons, rubber gloves, protocols. Alcohol hand gel before I enter the ward. Alcohol hand gel before we touch. No soft cheese. No pâté. (“My favourites,” sighs the Tall Man, glumly, to the dietician.) No leaving the ward. No leaving the room.
The Tall Man’s world has condensed to a neat square high above St. Paul’s; mine to that neat square, our bed (mostly empty), and the cab between the two. I think I have written that exact sentence before. None of this is new. We’re used to this, now, even if this kind of chemo, and a transplant, is more aggressive and more frightening than the four months of chemo leading us up to this point. And because we’re used to it, we know something about these rules: we know which ones we can break. We know which tiny rebellions are not only allowed, but encouraged, and we know which tiny rebellions we can get away with.
Fetching the Tall Man’s jug of water myself, instead of waiting for over-stretched orderlies to get round to it. Bringing in boxes of home-baked cookies, keeping one for ourselves, and leaving one at the nurses’ station. Skipping the hospital meals altogether, and eating together, hummus and pitta and crisp dukkah. Changing into my “hospital clothes” as soon as I get here: big socks, big holey cardigan, bra off. In as many small ways as possible, this neat square has to become our home, and only the most dedicated woman (surely?) keeps her bra on once she’s got home.
And I’ve been making my Christmas cards, smuggling a craft knife and Pritt Stick onto the ward every day, spreading glitter across the floor, and the Tall Man has been given a tiny, remote controlled helicopter, that he zooms about the room, taking test flights between the obs machine and the sharps bin, and bringing it to rest on an impromptu helipad of an upturned (unused!) sickbowl. And my lipsticks, of course. There’s a nurse who asks me every day what I’m wearing, and today I’m wearing Rebellious Rose: a deep pink that feels absurdly apt. It’s smooth and rich and lovely, and you can tell it’s expensive: it prints itself precisely and faintly onto the rim of a coffee cup (I am, this week, comprised mostly of coffee and nerves), and it has that satisfying magnetic clunk that I associate with my very favourite lipsticks. It’s pleasingly heavy, and it has a good honest greasepaint-and-parma-violets scent, without being old-ladyish. And that name! How could I resist it? The nurse writes it down on the back of her hand to look up when she gets home.
For I think the medical staff enjoy it, just a little bit – or at least, they tolerate it exceedingly well. They pop their heads in, and ask how the cards are going, or how far the Tall Man has got with his NaNoWriMo project (still fourteen words, since you’re asking). The junior doctors come and thank us for the cookies. The orderlies take our Scrabble mugs and put them in the dishwasher, to save me doing them by hand under the coffee-machine tap. They cast a blind eye over the tiny helicopter, and my craft knife. They go, as my friend Phoebe puts it, A and B the C of D, every day, in a hundred small ways, a hundred small kindnesses. A hundred small rebellions against an increasingly stressed, stressful, impersonal NHS.
And we are very aware, here, of the effects that the cuts are having, directly, on patient care. The nurses are consistently exhausted. “Man, I won’t be okay until I’m on the bus home tomorrow morning,” I heard one nurse tell another, as she came on shift – an hour before she was supposed to. They get here early. They leave late. There are, the nurse said, “too many patients, all too sick, so we’ve got to keep going.” They do. The nurses. The orderlies. And the doctors, from the consultant (and you all know, by now, that I worship the Tall Man’s consultant absolutely) down to the lowliest first year junior doctor. We’ve seen a lot of the junior doctors this time, and they are dedicated and kind and thoughtful, and they, too, work very, very hard. They are here before I arrive, at 10am, and are still working when I leave, sometimes at 10pm.
So this is a column, really, to encourage you to support a big, difficult rebellion: the Junior Doctor’s Strike. It will affect John’s care directly. And we support it. We support it with all our hearts: they work so hard. And in the spirit of Rebellious Rose – a really tremendous lipstick, by the way – I urge you to make it clear that junior doctors – and no doctors, really! No nurses nor orderlies neither – deserve a pay cut. Because that’s what the junior contract is. A real-time pay cut, for people working weekends and nights, to deliver consistently extraordinary standards of patient care. A real-time pay cut, for the people, who in a few years, we will need to trust with the charge and running of the enormous, terrifying, beautiful machinery of the NHS. A real-time pay-cut that will have a very real effect on patient care. So we support the Strike. And – trust me on this one – if you had a loved one in hospital, you would, too.
This column is a bit of a battle-cry: for tiny rebellions everywhere, for fair pay for a fair day’s work, and for Toby and Amrutha and all the other junior doctors who have administered the checks and drugs and run the bloods. We support you. We support this strike. We support, with all our hearts, the NHS. And thank you. For everything.
ABOUT SOMETIMES IT'S THE LITTLE THINGS...
I’d never been much of a makeup person before last year, but strange things happen on the cancer ward. When my partner, the Tall Man, was suddenly diagnosed with a rare, aggressive lymphoma, I found myself reaching for a battered tube of Mac Ruby Woo – part armour, part warpaint, all crimson defiance. This is a column about lipstick, and about caring, and about cancer, but most of all it’s my lifeline and it’s proof – for me, at least – that putting on a brave face is half the fight. Read my story so far here.