Two more weeks and this cancer nightmare is over
Emily Hourican's cancer diaries
Two weeks of treatment to go and I am veering wildly between thinking "just two more weeks, I'm nearly done here!" and then pulling myself up short: "Two weeks. Two whole weeks. Given what has happened to me in the last two weeks, how can I possibly do two more...?"
But in general, the giddy feeling wins out. Two more weeks and I am finished. Twenty-three sessions of radiotherapy done, 12 more to go. Two more drips of Cetuximab, two more meetings with my consultants, 12 more daily visits to hospital, and then this cancer nightmare is over for me. For now, and I believe, forever. Because the hope I cling to is that the cancer I have, HPV-viral-related cancer of the tongue base, doesn't come back the way other cancers can. Doesn't come back at all. This is what I have been told, and I am determined to believe it.
By now, the pain in my mouth and throat is pretty bad, but I have found that other things bother me more than pain. Talking is getting harder. My voice has been a feeble rasp for the last few days, and smiling is still not easy. This means the general level of chit-chat is down. This is a pity. I like chit-chat. The weather, funny things people's kids said, weekend TV, a wedding coming up. I'm usually happy to while away an hour or so on this, but not any more. Also I have a constant ringing in my ears that makes me slightly deaf and inclined to shout "what's that? What did you say?" at people in a way that, rightly, startles them.
So I am retreating a bit further, into my own little world. Already I feel like a stray cat the way I slink into the house and up to bed, avoiding my children in case they try and talk to me, engage me with the details of their lives. "Later," I think. "Later I will listen to them, talk to them, take notice of them. Later, when this is over." And then I think, "hmmm, when later finally arrives and I am done, how will I ever again find the energy for the simple to and fro of normal life?" But that is too worrying a thought, so I push it away.
That said, the big drama of this week has been the management of the pain. What to take and how often in order to stay on top of the soreness? For a time, I alternated paracetamol and ibuprofen quite happily, but then suddenly that wasn't quite enough - the niggles of bad pain would start when I was still a long way from the next intake and blanket coverage seemed never to be achieved - and so I got bumped up, to something prescribed with codeine in it. With lots of codeine in it. After the first dose, I am as high as I ever remember being in my life, wandering around the hospital in a daze, legs feeling like jelly, head like a helium balloon floating several inches above my neck on the thinnest of strings, about to detach completely.
That might sound nice, but actually, I hated it. Perhaps I am too much of a control freak to let go. Perhaps I'm just not quite miserable enough yet as who I am, to want to part company with that so completely. So we modify, we go back down the 'ladder' of pain medication - at the top of which sits morphine - to something with far less codeine. Even then, I can only manage half the dose.
But at least I know now that if this all gets so miserable that I want the last weeks to go by in a complete fog, a drug-induced haze, it's an option. Easily done. I have a bag of stuff right here that will do it for me, and that's without even reaching the morphine rung of the 'ladder'.
Clearly, I am sensitive to medication. And I think I know why. As children, we were all treated homeopathically. Which is to say, in my experience, with nothing but tiny sugar pills. When we got sick, which I have to say we mostly didn't, we went to bed and were given granules of things called 'Nux Vomica', 'Kali Karb' and 'Belladonna' for as long as it took for these to 'work'. I don't believe a single illness of mine was hastened on its way by these granules - given a day in bed and a few hot drinks, the body of a healthy child will shake off most things. I very much doubt the granules brought anything to the party except placebo, which of course is not nothing. If we needed painkillers, later on, for headaches, period pains etc, there was something that claimed to do that job. Again, it needed several hours in bed with a hot water bottle to 'work'. You cannot imagine my astonishment, years later when I had left home, at being casually given things like Anadin or Nurofen by friends. Things that had an immediate, discernible effect on pain. I felt like Miranda at the end of The Tempest: "Oh, wonder! . . . O brave new world, That has such people in't."
My mother still swears by homeopathy - my husband heard her giving me some homeopathic sleeping granules recently, with the recommendation: "Take three, and after a few hours, if they haven't worked, you can take three more." He thought this was hilarious - and she may well be more right than I. But one excellent legacy from the lack of hardcore medical intervention in my life until now, is the fact that I seem to respond, fast, to anything I do get.
Food is still an all-consuming horror, with all the stress of "you must eat!" dinning away in my head constantly. It takes me half-an-hour to eat a small bowl of clear soup, anything non-liquid is pretty much out by now, as is everything except the blandest of ingredients, and even then it's very much trial-and-error: pears are in, bananas out. Pasta is okay, rice isn't. The most surprising things cause pain and discomfort. "Try this," kind people say, having brought round exactly the sort of thing you think would appeal to an invalid like me - something soothing, soft, comforting. I try a bite, and for no reason that any of us can work out, it's a no. I'm like the Caesars of old, thumbs out, ready to confer life or death on some painstakingly-created dish.
Also waiting in the wings is a bag full of high-calorie nutrition shakes, given to me by the hospital. These, the theory goes, can take some of the pain out of eating thing. As much as 400 calories in one handy-to-drink shake. Instead of trying to tot up how many calories I might have consumed in half a bowl of clear vegetable soup, three spoons of plain yoghurt, a glass of carrot juice... So, "okay," I think, after a particularly bad eating day, "just drink the shake. Four hundred calories, then you can go to bed and forget all about it." I stood over the sink, in case the need to vomit came upon me, and opened a container of vanilla flavoured, slightly-thickish liquid. I managed - heroically! - to choke it down although it took a few goes, and keep it down, despite a strong urge not to. Then I felt sick for two hours. Proper lie-on-the-sofa-too-weak-even-to-get-to-bed sick. Ugh, So now I'm back to what my stomach tells me it will cope with: broth, some juices, bits of tofu (tofu, I have discovered, may just be the perfect radiation food: tasteless, soft, easy to swallow, apparently nutritious, too).
The most torturing bit is that I still have wonderful memories of what food tastes like. Mmm, I think. Hummus with warm flatbread. Burger and chips, steak, Caesar salad, lobster... And I can smell perfectly well - the kids had bacon sandwiches for breakfast this morning, and the smell sent me into raptures. But the reality is, no matter how delicious something smells or looks, as soon as it's in my mouth, it's ash. Sometimes sore ash, with the texture of grit; impossible to chew and swallow. I think there is a Grimm's fairytale about this - someone gets cursed with this very thing, that everything they taste will be ash. I can tell you, it's a highly effective way to ruin someone's life.
People keep asking me how I am, naturally. The answer is, I don't really know any more. In response I say, "okay, I guess", because mainly I'm thinking, "I suppose I could be worse". But as for how I actually am? No idea. I have come so far from what I am used to that I don't know how to assess my current whereabouts. So I have taken to letting the team in hospital tell me. By any normal standards, I feel pretty dreadful - most days I am not up long before I begin to wonder how soon I can go back to bed again - but hospital standards are not the same, and by these, I am apparently pretty good. Blood pressure? Normal. Temperature? Normal. Bloods? Normal. Pulse? Normal. Rash? Under control. Mouth? Sore, raw, uncomfortable, but sure what can you expect at this stage?
Once these vitals signs are monitored and the professional assessment of my side effects is complete, they tell me I am doing good, and I take that out into the world with me. Even when I don't feel it, that is the story I tell to myself. "I'm doing good."
That, and the sight of Bobby Kerr on The Late Late Show the other week looking bright and healthy, give me hope and enthusiasm for the future.