Emily Hourican's Cancer Diary: 'There are 34 more sessions of this to get through. It is a distance run, not a sprint'
In week four of her Cancer Diaries, Emily Hourican has a face covered in spots, and is worrying about the effect of her new reality on her children. "Never again will I be able to say with authority: 'that isn't going to happen,' about something unlikely that they fear."
The spots have arrived, earlier than expected. I think we - by which I mean my 'team'; the various doctors, nurses and consultants who are with me on my journey through cancer - thought I would get through two, maybe even three, doses of the drug, Cetuximab, before this, the most common side effect, kicked in. But no, Day Three after the first drip and I look 13 again, and not in a good way. Spots on my chin, forehead, around my nose, the odd stray one on my cheek, and a growing desire to scratch at my neck, arms, shoulders and chest. I can't work out if the spots look better or worse with make-up over them. I suspect I will be playing this one out for a while. By the time I get the second dose, a week later, I have a hot rash all over my face, chest and back.
There are apparently antibiotics they can give me for this. Originally, when these were mentioned, I paid very little attention. "What are a few spots, in the scheme of things," I thought. "I will be frying far bigger fish than that."
But now that the rash has arrived, I hate it. My face is sore, tight, slightly itchy. And knowing that I look worse than I feel isn't great either. Six more doses of the drug, and I dread to think how I will be. A wise friend told me when I started this: "it's not the things you expect that will bother you. It'll be something else, something left-field." She was right.
However, this is the only real side effect I have experienced so far - slight nausea for a couple of days, a headache, disrupted sleep - but nothing too bad. For this, I am grateful. There is a point, not too far away I suspect, where I will hardly know how I feel. Where symptoms will have multiplied to such an extent that all of me just turns into a mass of different discomforts: vague nausea, vague headaches, vague aches in other parts like ribs and cheekbones. Low level itching of rash, overall fatigue and gloomy spirits ... By now, I'm not even sure how I used to feel before all this started. Better, I presume, but it seems hard to connect with that now. I am only myself in the moment. I can't remember myself in the past or imagine myself in the future.
My birthday passes slowly, with an infusion of the drug followed by my first session of radiotherapy. How quickly the outrageous becomes mundane, I think, as I settle onto my bed in the day ward, arm out for the needle. All the things I should be doing today leap up to mock me. Outside it is sunny, cold and still; my favourite birthday weather. It's the one day my family can refuse me nothing and so each year we do my kinds of things, which really means nothing very much. Actually, my kids laugh at how boring my birthdays are - my perfect day would be a walk up the Sugarloaf, then dinner at home. No wild parties, no boozy lunches. But they know the drill, unexciting as it might be, and are ready to indulge me. The five-year-old has a full day of events, including a surprise party and some cake-baking, planned. Instead, they wait, put off hour to hour as I try and get through the alternative schedule, the one the hospital has planned for me.
As for how they are coping in general with the great change to my life that ripples smaller changes through theirs - they are coping as kids cope. My daughter, who has chapped lips, shouted from her bed the other night "Mummy, I think I have mouth cancer!" After a momentary silence, the boys started laughing wildly. "I've got bum cancer," one of them said. "I've got hair cancer," said the other. This is how they cope - by laughing, by distancing, by playacting. Who knows what effect this is really having on their innermost selves? I fear their faith in the world has been deeply rocked; that never again will I be able to say with authority: "that isn't going to happen," about something unlikely that they fear - like their parents dying in an accident, like them getting sick themselves; any of the unexpected terrors they have voiced over the years and allowed themselves to be jollied out of. Because now it has happened; the unexpected, the unlikely, the unwanted. And so it can happen again. But perhaps, too, they will grow up thinking of cancer as just another word. A nasty one, but a manageable one. Like flu, like appendicitis. And given what we are told about the numbers of us who will face, and get through, this disease in the future, maybe that is no bad thing.
Perhaps the most immediate impact on them is my sudden, urgent need to force them to do things for themselves; to grow them up in just a few weeks. Instead of Who Will Love My Children?, which of course is the first film that popped into my head when I was told I had cancer, it's more like, How Will I Empower My Children? How will I suddenly transfer to them the skills they are going to need in the next few months - by which I mean the small things, like getting themselves a slice of toast when they want one, rather than asking me. Frantically aware that soon I may not have the energy to indulge them as shamelessly as I have done, I am trying to encourage them to be more self-sufficient, at least in the matter of glasses of water and the like. They, poor things, are confused. "Get it yourself," I say urgently to all their requests. "You need to know how to do this. It's time you learnt where the milk is kept." I am packing several years of independence training into a couple of weeks. They, of course, hate it. "Why can't you do it?" they want to know. And what do I say to that? Having deliberately tried to downplay the extent to which I will be laid low by this treatment, I can't suddenly say "because soon I will be unable to get off the sofa, or restrain myself from howling in pain. I may be hospitalised, tube-fed, doped up on morphine. I won't be around to make you toast!". At the moment, I'm settling for: "because it's time you learned."
Back on the day ward, I receive birthday congrats from the nurses and we compare notes on how ready or otherwise we are for The Big Day beyond. One woman, a patient like me, is wearing a jolly Christmas jumper, sleeves rolled up for the drug drip. We compare side effects and look forward to next year. She is a couple of weeks ahead of me, but I don't ask too much about what waits down the road, because suddenly I don't really want to know. I mean, I do know, but I don't want to hear it from people actually going through it. I've heard enough from the docs. We talk, and then we fall silent. "I can't wait to get home," we both say at intervals.
Everything takes longer than they say. Entire days seem to going by while I sit and wait for drugs to drip, machines to heat up or cool down, the people before me to finish their sessions. I am focussing a lot of resentment around this waiting. And yes, I know that it is displacement - all the fury I feel at being here at all is being channelled into irritation at sitting around. But, more than anything else, this makes me feel usurped as the driving force of my own life; as if I have been forced into a surreal game of Piggy In The Middle, with my health as the ball, permanently out of reach as I race from person to person, each of whom holds it over their heads then passes it to another just as I reach them. There is, I suppose, a fine line between kicking too much and accepting too much; between surrendering too much of my life to the system, and chasing after it too hard.
In the end, I behave badly outside the radiotherapy unit, complaining about the length of time I have been waiting. "This is a hospital," I am told, politely but firmly. Not a hotel ... is the silent inference. They have a point, I suppose. I apologise, and we get on with it.
A full 20-minute session in The Mask isn't easy, but it is more painful than traumatic. The Mask is tight and constricting. It pushes my jaw forward so that by the end, the strain makes my teeth chatter slightly. But I don't freak out. Although I do wonder what would happen to me if, in a Day Of The Triffids type scenario, the entire hospital staff were wiped out, with me surviving but left bolted to the table. Don't go there, I tell myself firmly, and go back to reciting what I can remember of The Lake Isle of Innisfree. There are many more sessions of this to get through. It is a distance run, not a sprint. A question of rhythm and pace and, like everything, timing.
Three sessions later, my throat is slightly sore and my mouth is dry. Finally, I am here, where they told me I would be. In treatment. The talking is done, the consultations are over, the what-ifs laid to rest. There is now just me, and the countdown. Suddenly, seven weeks feels like a very long time.