'I don't really know who I am any more'
In week six of her Cancer Diaries, Emily Hourican discovers the difficulty of being yourself when all around you has changed
Published 10/01/2016 | 02:30
I don't really know who I am any more. Most of the things I thought I was seem to have been the result of the things I did - my job as a journalist, my writing of books, my role as a mother, as a wife and daughter, sister and friend. Now that I have parked most of those things, leaving them to sit on the sidelines for the next while, paring back the non-essentials - which seems to include just about everything that isn't eating and going in and out of hospital - I'm not sure who the person left over is.
I have abdicated so many of the things I used to do - I haven't been to the supermarket in weeks, I didn't take the kids to school on their first morning back, I don't cook or do much cleaning up, I don't go out much except to walk or for the odd run, I read a lot and I write a little, and then weariness sets in. It's not even that I am especially tired; it's more that I lack purpose, direction. I'm always waiting to go into hospital.
It's a weird feeling. And it makes the days very, very long. Even though I am going to bed earlier than before, sometimes even disappearing off for an hour's nap in the middle of the day, there still seems to be an awful lot of the day left in which to wander around the house, without any clear focus, picking things up and putting them down, wondering do I have the energy to clear away the Christmas cards, until eventually I give up and pitch up on the sofa, in front of the TV, watching shows about antiques that I have never seen before.
Worst of all, I feel I am less engaged with my children. I don't quite have the energy for the relentlessness of their requests and demands, the urgency with which they lead their lives, the boisterous pitch of their voices.
Actually, I feel as if I am a stone in the rushing stream of their existence, one that they simply divert seamlessly around, speeding on unchecked by my failure to meet them, match them, keep up with them. All the things they used to tell me, ask me, show me, are now taken to my husband instead. Sometimes they pat me kindly as they go past; "are you tired, mummy?" they say. "A bit tired," I agree. "I'll be grand in a while." Mostly I am glad at the remarkably sturdy life force that impels them to behave like this, driven to seek fulfilment of their needs wherever that is best to be found. It is a biological imperative, and thank goodness for it. But in my lower moments I wonder will I ever again occupy a central role in their lives or am I going to be gently sidelined for good?
At night, I go to bed early, exhausted, and then I can't sleep. My mind won't shut down. Instead it races, works itself into a frantic, dreary loop about what will, might happen, playing out scenarios that are quite possibly as unlikely as they are unpleasant. Nothing I can do in terms of deep breathing, visualisation or stern talking-to seems to work. There is a line from Othello that I repeat endlessly to myself: 'Oh now forever farewell the tranquil mind.' It's a good line, but unhelpful to me right now. Sometimes I follow it up with a line from Derek Mahon's beautiful poem Achill: 'One more night of erosion and nearer the grave.' Another wonderful line, but also pretty unhelpful just now.
This week seems to have been mainly about food. What I'm eating, how much, how often. From the very beginning of this wretched 'journey', I have been told that my 'job' is to keep my weight up. To eat even when the eating gets tough. If I do not do this, I have been warned, dire things will happen. Too much weight loss and the mask won't fit. And it's all about the mask.
So, too much weight loss and they take the responsibility away from you. Your job is outsourced, to a stomach tube. Too much weight loss and I will be by-passed, fed from plastic bags containing carefully-calibrated batches of synthesised food. Anything, basically, in order not to interrupt treatment.
Although I have learned not to fear the stomach tube, it is still one more piece of medical intervention. One more bit of surgery, requiring general anaesthetic.
One more process to recover from when I am in a place to do that. And so I would rather not. Frankly, the idea of eating as my main focus for each day seemed okay to me. How hard could it be, right? Particularly when they tell you to chuck the rule book out the window, for a while anyway, and add extra butter, cream, full-fat everything to your diet.
Well, I am beginning to see why they make such a big deal about it. Once the sore mouth starts to kick in - and by now, despite the four different types of mouthwash, I have a few painful spots as well as soreness of swallow that comes and goes - once food loses its proper taste - and even water now has a faint, nasty, chalky tang - the business of eating becomes far less appealing.
Luckily, I haven't lost my appetite yet. It's battling away, bless it, causing me to crave cheese on toast at midnight when I can't sleep, even though the toast hurts my mouth and having to do my teeth again nearly tips me over the edge. The craving is bigger than either of those things, bolstered by the voice in my head that says 'eat! Eat now, while you can. You're going to need it.'
And yet, I can feel the preliminary fussiness setting in. It's like a shimmer of nausea at the periphery of my mind. I find it hard to think about what I might like to eat although I will mostly wolf down whatever is put in front of me. I can't open the fridge because the sight and smell of the food in there makes me feel sick. And I can't eat leftovers, usually the mainstay of my diet. Once I've eaten it once, I can't bear to look at it again, no matter how delicious it was first time around.
But I have had some training in this business of eating while feeling slightly sick. Pregnancy is a great testing ground for this one - I still marvel at how much food it is possible to cram in while thinking 'God I feel sick, I couldn't eat a thing.' Then, too, it is a job, a process to be forced if needs be, for the sake of the baby. Right now, I am having to treat myself a bit like a baby and do the things that are 'good for me,' whether I want to or not.
In general though, the psychological is still worse than the physical - maybe that is going to be the way of this throughout. Yes, my mouth is sore, and it hurts when I swallow; my skin is so photosensitive due to the radiotherapy and drugs that five minutes outside (I'm not allowed to wear sunscreen) and I look like one of those Appaloosa horses, the kinds that have red and black spots all at the same time (it looks great on a horse), but nothing is too unmanageable. Nothing worse than the kind of discomfort produced by an average nasty-sore-throat-from-a-head-cold type thing. The trouble, such as it is, is mostly in my head.
Which is why I may, as I approach the end of the third week of treatment, take up the long-standing offer of a counsellor, someone to talk to who is experienced in the mysteries and miseries of cancer and the effect it has on the minds of those afflicted.
I thought I would get through without this kind of help. Not because I think there is anything grand or noble or impressive about doing without, just because I am usually pretty good at working out what's wrong with me, and fixing it in my own way. A bit more fresh air and exercise, forcing myself out of bed early even if I want to lie on because I had a broken night; in really bad times, going for a massage or some acupuncture. Now though, these things either don't work or are unavailable to me. And so counselling it is. Yet another step on a road I never expected to take. But, like all steps so far, being here is really far less of a deal than I anticipated.