It’s a year today since the Tall Man’s diagnosis.
I didn’t go to visit him until after the consultant had been: he liked to hear news on his own. He always does. And he called me from the hospital, and said, well, they know what it is, and we know how to fight it, and then he paused, and I said: there’s something else, isn’t there? And there was.
There’s a 33% chance it won’t respond to any kind of treatment, he told me. But there’s a 66% chance it will. Two thirds.
You’ll remember that, if you’ve been reading this column for all this time (and thank you, if you have, for sticking around). I found, today, a lipstick that someone sent me in that time. I couldn’t resist, she wrote: dark red in the packaging, and neatly numbered 166. I hadn’t tried it then, but now I have. It’s lovely. Bright and pretty and pinker than you’d expect, like most reasonably priced red-looking lipsticks.
I tried it today, because I felt like I wanted some kind of tangible connection to that time a year ago: something to mark that this is the first anniversary, and that we made it through a year. That sixty-six was triumphant; that whatever happens next, we got through a whole year. Most people with hepatosplenic T-cell lymphoma don’t, remember. Him getting to a year – whatever the future holds – is a bit of a miracle.
I don’t know what the future holds. Just as this time last year I could not have described, even at gunpoint, what today might look like: I cannot tell you anything. There are more tests – another PET scan next week – and he’s being weaned off the immunosuppressants. It looks like the latest transplant is working, but we won’t know that, really, until we reach the milestones set out by his consultant. Eighteen months for “unlikely to return”; three years for “champagne in clinic”; five years for “cured”. Every day closer to that five year marker – or even that eighteen month marker – is another cause for celebration, and it’s hard to remember that, sometimes.
You’d think that a year on, this would be easier. In some ways, of course, it is. But cancer isn’t a sprint: it’s a marathon, and then another marathon, and then another marathon. Marathon after marathon, all with different terrains and challenges and hiccups and twists and kinks in the way. And there’s no map. And no time to train. You go in unprepared, and you keep going, and you keep going, and you keep going. Sometimes slower, sometimes faster. Sometimes you pause, briefly, to gulp down some water. Catch your breath. Not enough of either. And you keep going. And there’s never time for the muscles to heal; never time for the damage you did when you first started out to mend. Never time for anything but the sheer brutal act of keeping going and going and going.
This is a story about getting through it all. It’s a story about small triumphs and minor successes and little joys in a big, terrifying universe.
I don’t know where the finish line is. I hope there’s someone waiting with ice, and an orange-half to suck. (You may have noticed that I don’t do a lot of sport: this metaphor is getting rather tenuous).
This latest marathon is hard in new ways, and ways I didn’t expect. There’s a lot of help when someone first gets ill: lots of leaflets and books about what to expect, and you’re surrounded at all times by the cleverest and most compassionate people in the country. Your friends and your family drop everything in the emergency of it all. There’s a drama to it, and everyone’s involved. You’re in safe hands. And now? Well, now we’re not. We’re away from Barts most of the time. Hardly any doctors. Hardly any tests. It’s up to us to spot anything that goes wrong; up to us to notice if it looks like it’s coming back. I have never read anything about this bit. My friends who have been here say the same: we don’t really talk about this bit. The doctors I have spoken to said they didn’t even really know how to help.
“We understand the bit when there’s illness,” said one, “but we’re less good at understanding what comes after.”
“That bit at the end of the night where the music stops and the silence is loud,” another friend said, and that’s exactly what it’s like. I had got used to the bustle of the hospital, and the chaos of a constant fight against imminent death, and now? There’s nothing. It’s kind of lonely. It’s very frightening. It’s uncharted waters.
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I had thought, perhaps, that this cancer-and-lipstick column might come to a natural end once the transplant was done. I thought I might have run out of things to say about cancer. I thought cancer might be done with us. But, as it turns out, it’s not so simple as that. The repercussions of cancer; of being a carer; of this reasonably traumatic year – they don’t just stop. They keep reverberating, round and round, affecting everything they touch. How do you live a normal life, knowing that you know nothing? How do you go back to your day-to-day routine after a year where the day-to-day was all hospitals and safe hands? How do you manage? These aren’t questions that are unique to Cancerland: they are questions that anyone who has got through a troubled time has to wrestle with. The only way to make this time less lonely, I think, is to do what I’ve always done: write about it. Reach out. Talk to people who understand what it’s like to try and build something new out of the ashes. And build together.
This has always been a cancer-and-lipstick column, but it’s also, in this new marathon, a PTSD-and-lipstick column; a burnout-and-lipstick column; a new-normal-and-lipstick column. It’s a story about coping with things you didn’t think you could cope with, whatever they are. It’s a story about getting through it all. It’s a story about small triumphs and minor successes and little joys in a big, terrifying universe. And it's the story of celebrating every single day you’re alive, and some bright red 66% lipstick, and going boldly into whatever is coming next, whatever that may be.
Thanks for sticking around this last year, friends. I’m so glad to have you. And I can’t tell you what a difference it makes.
ABOUT SOMETIMES IT'S THE LITTLE THINGS...
I’d never been much of a make-up 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.