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Home: The Toast

If you’d like to help Tall Man and other blood cancer patients, please donate your bone marrow in the country you live in, and if you have money, they’d love you to give it to Anthony Nolan in the UK or to Be the Match in the US. 

Previous installments can be found here.

It’s autumn now, in London. Bright, high, clear days, followed by grey ones heavy with fog. My blue cobbled streets are already flocked by drifts of leaves. It was summer when they took the Tall Man in, and now, he’s home.

I put on my jacket-new, buttery, battered leather- the Tall Man looks up from his book, and says “That jacket is so Bisto legs it fucked an airman in the back of a Lyons Corner House,”- and I walk. I walk and walk, always alone, mostly in silence. When the Tall Man was first diagnosed I couldn’t stop myself shouting at strangers, like some mad reverse-Oprah: you don’t have cancer, and YOU don’t have cancer, and YOU don’t have cancer! You aren’t in hospital, and YOU aren’t in hospital, and YOU aren’t in hospital!

But time passes. A month since my first column, six weeks since diagnosis. Six weeks since we sat in the hot little room, my Tall Man and I, and the oncologist told us that my worst suspicions were true: that the Tall Man had cancer, and that it was bad, and that they couldn’t tell us- didn’t know!- how he would respond to treatment. Two weeks since they told us that he was responding well. Two rounds of chemo down. More to come.

Six weeks is simultaneously a long time, and no time at all.  I have stopped shouting at strangers. I walk and walk and walk, up along the road and down by the canal- where the coots I love so much have had a second set of babies since I last saw them, where the waterlilies are out, where the heron stands still- and down the blue cobbled lanes and up to the farm- where the lambs are almost as big as their mothers, where the blackberries are coming into ripeness, and where the harvest is coming in.

Screen Shot 2015-09-21 at 16.24.05September, for me, is always the Harvest Festival. I am not religious, but in England most state schools, I think, are vaguely steeped in the C. of. E., and for all of my childhood we practiced thankful hymns all month, and took tin cans and sheafs of wheat up to the altar at the end. And I grew up on a smallholding, and September was the month when everything was gathered in: onions stacked on pallets in the barn, garlic plaited from the rafters, apples layered between old newspapers in perforated Tupperware boxes to dry out. The end of the courgette glut. Baskets of damsons. Greengages, plums, and great golden squashes, all lugged up the aisle to be blessed and praised and exalted by forty under-eights (“There’s a song to sing/ as the Harvest comes in/ to the one who brings sunshine and rain/ Let us all join in/ with a thank-offering,/ for the Harvest that’s gathered again…”)

I catch myself, at the gate of the farm, launching quietly into songs of praise. Everything here is fecund and ripe and ready, sprawling. It is almost obscene. And I find myself thinking about the worst part of this whole business of cancer and chemo and hospitals, the part I dwell on, constantly: and it is the part about fertility, and the future.

It happened early on: maybe a month ago now. Just after I filed the first column. I haven’t written about it, perhaps because I don’t know how. Perhaps because he wrote about it already, and he is funnier than me. Perhaps because thinking about fertility makes me think, inevitably, about mortality. And those are the big questions.

*

Screen Shot 2015-09-21 at 16.29.12“Nobody will talk about the fact he might die”, I tell my therapist. My therapist is a youngish man with a single hoop earring, and expensive socks. His name is Chad, and he is an NHS clinical psychologist: like all the Tall Man’s treatment, my therapy (at least for now) is free.

Chad and I are sitting in a room in an old maternity centre. You take what you can get, on the NHS, and right now what we can get is a little room with peeling paint in the former East End Mothers’ Lying-In Home. The curtains are paisley polyester, there is a box of child’s building bricks abandoned on a shelf in the corner, and there’s a sheaf of somebody’s notes wedged under the leg of the desk, to keep it steady.

“Nobody will talk about the fact he might die”, I tell Chad.

“Let’s talk about the fact he might die”, says Chad.

I look studiously at the paisley curtains.

“Do you want to talk about the fact he might die?”

“Nobody will talk about the fact he might die.”

“We can talk about that now, if you want.”

I am folding my hands over and over in my lap. I wonder about the person whose medical notes are wedged under the desk. I wonder about the baby who last played with those bricks. I wonder about the babies that were born here. It seems a grim place to be born. It seems a grim place to have to think about death.

“How do you feel when you think about the Tall Man dying?”

I tell him: the Tall Man’s dad died when he was a teenager. Nobody I knew had ever died.

“How do you feel when you think about the Tall Man dying?”

I tell him: a man who used to cut my grandparents’  lawn killed himself when I was twenty and suicidal and staying with them. It was a Sunday morning, and my grandmother broke down crying, because she felt she could have done more.

“How do you feel when you think about the Tall Man dying?”

I tell him: I read a book once about a man who hit his head, and when he came to he saw that all the road signs, his newspaper, the back of the cereal packet seemed to be printed in Cyrillic. Greek. Some alphabet he couldn’t understand. And nobody else could see anything wrong with it at all.

“How do you feel when you think about the Tall Man dying?”

It suddenly strikes me as very, very funny that we are having this conversation in the East End Mothers’ Lying-In Home. I try not to laugh, but it comes out, instead, as a kind of half-sob, and I say to Chad, half-laughing, half-crying, “If he dies, I die,” and Chad says “You think?” and I nod and nod and nod, and Chad writes it down on a pad.

“Who won’t talk about the Tall Man dying?” Chad asks me. ‘Why won’t they talk about the Tall Man dying? Think about it.”

I do think about it. And, of course, I know: the person who won’t talk about the Tall Man dying is me, and that is because it is the unbearable.

It is also why I have not said anything to Chad about the fertility clinic, and why I have not written anything about the fertility clinic. It is because it is the unbearable, which is to say: it is the uncertain future, and the certain future, and the certain heartbreak of both.

*

“Could we have,” the Tall Man says, and his voice kind of cracks but holds, firm, and I am so proud of him, “maybe ninety seconds?”

The nurse nods. His mother rests her hand on the back of his chair.

“Just us,” he clarifies. “Ella and me.”

His mother removes her hand from the back of his chair. The nurse nods again.

“Be quick,” the nurse tells us. She meets my gaze. “There’s not a lot of time.”

This much is abundantly clear to all of us. You take what you can get, on the NHS, and what we can get, now, is ninety seconds. Just give us time, I want to say, just a bit more time. Ten years. Twenty years. Just a bit more time.

There is no time.

“So,” the Tall Man says.

“You don’t have to do this,” I tell him, “if you don’t want to.”

I am lying. We both know it.

“I don’t want to,” he says. ‘And I do have to.”

“You have a choice,” I tell him, and something behind my belly button tightens like a screw.

“I don’t have a choice.”

In a film this would be a moving, tender moment: we would make our choices together. And I suppose we do, in that the decision we make, in those ninety seconds, is the same choice on both our parts. But I have never felt more alone.

“I will do the fertility treatment, because you want me to.”

“The nurse said I didn’t matter.”

I say this aloud, because I don’t want to forget it happened. I want to bear a grudge for this. We are not married (we were going to be, but that doesn’t count), and we are young, and the nurse said I didn’t matter.

“Of course you matter.”

“Not to her I don’t.”

“No,” he says, heavily. “Maybe not to her.”

He leaves it too late to say “You matter to me.” I know I matter to him. We would not be having this conversation if I didn’t matter to him.

“We shouldn’t be having this conversation now.”

“No.”

“We should be having this conversation in ten years. Fifteen years. Twenty years, even.”

“We’re having it now,” he says, “and we are running out of time.”

He looks at me.

“Do you, or might you ever, want children with me?”

We are 22 and 25. We have been together three and a half years. My grandmother had two babies by now.

“You don’t want children ever,” I say.

“That isn’t what I asked you,” he says.

“You don’t want them ever,” I say again.

“Say it,” he says.

The screw in my belly tightens.

“I might,” I say. “Yes. I might. I might. Yes.”

“Fine,” he says. He stands up. Fine, final. The room is suddenly much too small. The nurse opens the door.

“All done?” she says, smiling broadly. I hate her. I hate her so much the room is spinning. I think I am crying, but I’m not sure. I have to go.

I think I manage “Good luck” to the Tall Man, and then I’m gone. I barely make it through the airlock before my legs give way, and then it is a blur. There is no time, there is no time, we are old before our time, and it is unbearable.

*

If you have an aggressive cancer that needs to be treated with aggressive chemotherapy, you will almost certainly lose your reproductive potential. That’s the way the book puts it, anyway, and then, underneath, in case you were confused: many people who have this treatment are unable to conceive children naturally.

Here is what happens, if this happens to you, and you are a person with testes: they ask you to (as the Tall Man puts it) wank into a cup. From this, they freeze sperm samples, and then, later on, they will give you and your partner of choice three free rounds of IVF. You do not have to nominate your partner on the paperwork, unless you are potentially likely to die, in which case, they advise you to leave your children-in-potentia to somebody. A sort of living will, as it were. Thus: there are six viable sperm samples in some dank NHS chest freezer somewhere, belonging (at least in theory) to me. Should the Tall Man die, I am free to do with them exactly as I wish. Should he be in a persistent vegetative state, I must decide what to do with him, first. This is all stipulated in the paperwork. It is precisely as odd as it sounds.

Here is what happens, if this happens to you, and you are a person with a womb, vagina, and other typically female reproductive system: nothing. Probably nothing. There is probably nothing that the NHS can do to save your typically female reproductive system, because you don’t have time. There is no time. It is, apparently, much more complicated to save the female reproductive capacity.

This strikes me as both unfair, and deeply inevitable.

It also strikes me, as I am lying on the pavement outside the hospital, that we are on the lucky side of this coin: I would not want children with anyone but the Tall Man, and we have that choice now. We have a choice. If this were the other way round, and it were me with the cancer, we would not have that choice. We are the lucky ones.

I say this to myself, over and over, under the August sun, with curious Sherlock fans looking down at me, until it seems true.

(As I write this, right now, it seems both true and untrue: we are Schrodinger’s luck. We are always waiting for the result of some test or other, and these tests are there to tell us, each time, how badly the Tall Man’s body has betrayed him, and how for how long, this time, we should continue to consider ourselves lucky.

A month in hospital is unlucky.  A week at home is lucky.

Low bloods is unlucky. High bloods is lucky.

Dying is unlucky. Alive is lucky.

You see how it works. Schrodinger’s luck.)

*

You will have gathered, now, that the Tall Man was this time part of the 66.6% of people with this cancer on whom chemotherapy has an effect. What I had not gathered, when I told you that statistic, was that entry to this club was in fact entry to a whole series more of these number games.

I had not realised, for example, that 1% people do not survive a round of chemotherapy at all. The cytotoxins are too much, and they die.

He has two more rounds of chemotherapy to go, this time. The second of these rounds is designed to obliterate his bone marrow entirely. It is impossible to survive this second round without a procedure called an autograft, which is where they will harvest his blood once it has been cleaned, by the chemo, of cancer, strip the blood of stem cells, and put the stem cells (now free of cancer) back in.

Roughly 2% of people do not survive the stress of an autograft.

After the autograft, he will need between three and eighteen months to recover, assuming he is part of the 98% people who do.

(All of this, of course, is assuming that the ultra-aggressive cancer does not outpace medical ingenuity.)

As soon as he is well from the autograft, they will consider an allograft: that is to say, a bone marrow transplant. They will need to find a donor for this procedure.

Roughly 10% of people die following an allograft.

The 90% who do not die all suffer, to some degree, from a disease named Graft Versus Host: it manifests as an autoimmune condition, attacking the gut, the skin, and the liver.

“You don’t have to do this if you don’t want to,” the Tall Man’s consultant tells him. “You have a choice.”

The Tall Man’s consultant also tells him this: the ultra-aggressive cancer- so rare that we are not allowed to know specific outcomes- kills most people who have it. Those people who have survived this aggressive cancer have had allografts.

As with the fertility thing, the Tall Man tells me later, there wasn’t really a choice at all.

*

In the draft for the first of these columns, my agent wrote in the margin of the description of the hospital: like a casino. I have been thinking about this, and she is right, not least because of this: we are playing numbers games, and we can only lose.

There is no possible outcome where we get exactly what we want, which is to say, what we had before.

Screen Shot 2015-09-21 at 16.24.37There is no possible outcome where, to pick at random one of the possible futures we might have had, we get married, and move to the Highlands, and have a handful of babies and a pair of dogs and several haughty cats. We have to stay near hospitals, good hospitals. We have to keep house to minimise infection risk. And I have told you, already, about the Baby Thing. (This is how I think of it: The Baby Thing.) 

For there is no possible outcome in which “cancer” does not have to feature as the third party in our relationship.

For there is no possible outcome in which our agency is not profoundly and irrevocably altered by the way the Tall Man’s body has repeatedly and extravagantly betrayed him.

The Tall Man’s body will never again be solely the dependable body I have loved.

I come back, time and time again, to this scrap of scientific knowledge I have picked up somewhere: in the last stages of scurvy, old scars begin to reappear on the body. The body remembers. The body, even as it appears to us to be whole and new, remains open. Vulnerable. Marked. In the last stages of scurvy, the body blooms with old hurt.

The house always wins: the players always lose.

Still, we keep playing.

The game might be crooked, but it’s the only game in town.

*

My therapist told me: I need you to write something about death. I need you to write something about how the Tall Man dying makes you feel. I need you to write something that doesn’t tell a hundred other stories first.

I thought, but did not say: everything is a hundred other stories first. That’s what life is.

*

I am walking into autumn, along my beloved blue cobbled streets, in my flying jacket.

I think about the hundred stories that got us here. I think about the hundred stories in the cobbles under my feet.

I think about the renegotiation of our lives. I think about how it’s the only game in town.

And I walk past the farm, and its harvest, humming under my breath the hymns of my childhood, and I make the turn for home.

And he is there.

We are small, and fleeting, and yet here we are: I hang my jacket up, and sit with him, and we eat our pumpkin soup together at our own kitchen table, pausing now and again to meet each other’s eyes, and be glad. This- this is lucky.

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Ella Risbridger writes chiefly about food for fun, books for love, and pretty much anything at all for money. Like everyone else, she is currently working on her first novel. Just to mix things up a bit, she is also attempting to make food/mental health blogging a thing. It's not a thing, but you can read it at eatingwithmyfingers.com anyway.

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