Emily Hourican's Cancer Diary: 'I used to like being thin but if this is size zero, then it's horrible'
I used to like being thin. I even used to like when I got a little bit thinner, after a stomach bug or a busy week. Losing a few pounds was the silver lining in many a short illness for me and most of my friends.
Now that I am properly thin, close enough to worryingly thin, I hate it. And not just for what it represents - the miserable failure to eat even when I try, the nausea that tips over to vomiting more and more, the implications for my treatment and recovery. I actually hate the way I look, with skin stretched too tight over sticking-out bones. Too much hip bone, too-protruding knees and ankles. It's ugly. If this is size zero, and it probably isn't even, then it's horrible.
There have been many walls along the way on this miserable cancer journey, and I hit another one of them last week. Eating, which had been difficult, became almost impossible. Nothing seemed remotely bearable; the sight, smell and taste of all food made me want to put my head down on the table and cry.
If I forced myself, and I did, then after a few mouthfuls I would suddenly have to lurch from table to loo, to vomit the whole lot back up again. There are few things quite so dispiriting as seeing the food you have struggled so mightily to ingest, the food you desperately need to keep down, disappearing into the lavatory bowl.
So by Wednesday - after my weight holding remarkably steady for ages despite the dwindling appetite - I am down by 4kg in less than a week, and a certain amount of panic sets in among my team and I.
That's a lot to lose in five days. It puts me suddenly into the will-we-won't-we tube feed category. It also puts me into the lowest, weepiest mood yet. I have to restrain myself from breaking down and throwing myself into the arms of the sympathetic radiation nurse. Not that she would mind - in fact she'd probably sort me out in a jiffy - but because there is no point. If I start crying now, I won't stop until treatment is all over.
Tube feeding, it turns out, is more complicated than I thought. I thought I could be admitted for two days, have a tube inserted from nose to stomach, get the calories poured into me that I so desperately need, and be back out for the weekend feeling great. Or better, anyway.
But it doesn't seem to work like that. Apparently I am now in need of something called re-feeding, which means that my body is so unused to decent amounts of calories - it is in some kind of starvation mode - that they can't simply pump me full, they need to proceed very slowly, taking several days to get up to full speed. Otherwise, the pressure on the system is simply too much and Bad Things happen. So getting a tube means being admitted until the end of my treatment, and I don't want to spend the next 10 days in hospital, away from my children.
So we investigate exactly why I can't eat. Is it the pain? No, I say, the pain is under control. I just can't eat. My stomach rejects the food, everything makes me feel sick and when I force myself, I vomit. I confess it feels feeble to be saying "I can't eat, I can't stand it, the idea of food makes me miserable," when around me people are in far more dire straits.
I feel wilful, weak. Like an anorexic. And I guess, finally, I am thinking of myself as 'sick', with the dash of self-pity that brings. Behind the team's kind concern, I can sense a shadow of exasperation. After all, I'm not stopped by raging pain that needs to be controlled with morphine, like others.
My swallow is not so badly affected that I can't physically get food down. I'm young, I'm fit, I should be able to do this, is what I think they are thinking. "Be more sorry for me!" is what I am thinking. "I'm sick and this is really hard."
From someone who would have done anything to avoid going into hospital - with each of my three babies, I was out, with newborn, within eight hours of delivery - it is a shock to realise that I have become someone who actually wants to be seen as 'sick', who half wants to be taken in and minded, for a while anyway. But only half. The other half of me knows I need to stay out, stay home, stay eating, no matter how attractive the idea of giving up, giving in, giving control of my life to the lovely nurses, suddenly feels.
"We're going to try you with stronger anti-nausea medication," the docs tell me. "But I don't feel nauseous," I say. "Not until I eat, and then it's not even nausea, I just throw up."
I don't want more medication - frankly, I think that's part of the problem; I'm on various painkillers and two types of antibiotic already, pills ingested through the day, by the clock, without let-up. But they are firm. "We'll try this, and if it doesn't work, we'll have to talk about admitting you."
So, ball back in my court. No brief respite, no 'payment holiday' as the banks would call it, no merciful chucking of responsibility for keeping the show - ie, me - on the road into someone else's lap for a while.
Back to sitting over bowls of bland food wanting to weep with horror.
I take the medication they give me. Actually, they sort of stand over me until I swallow the first one, and off I go.
And you know what - it works. Their anti-nausea pill works, even though I was certain it wouldn't. Within a few hours I actually have something of an appetite again.
Instead of being revolted by food, I am resigned. It still doesn't taste of anything much except ash, but I can eat it, and even start to look forward to what else I might be able to eat. And I eat proper food, not just mushed-up baby stuff. I have a quail leg for dinner, with some pasta, then poached pears and custard. I feel like Henry VIII.
In other news - and yes, this is what passes for news in my life - my neck is sore and scaly from the radiation, like a wounded crocodile. I've been given a pink dressing to wear over it. I look like a dog with a flea collar.
But we are so close to the end now that I can almost begin to bring myself to think about After and what I will do.
The Communion party for one child, Confirmation for another. The garden and all the work that needs to be done in it. Sitting down at my desk with a cup of coffee and writing, with joy rather than grim determination. Walking the kids to school in the morning, chatting to them, being interested in their things rather than in myself and my symptoms. Everything, suddenly, feels as if it is in front of me; possible rather than hopelessly out of reach.
And yet, in the last week, a friend has been diagnosed with breast cancer and an acquaintance has died from it.
This lonely world of cancer is, in reality, far too crowded.