Wednesday 22 May 2019

Emily Hourican's Cancer Diary: 'Right now, this is all more depressing than it is dramatic'

It's week five of her Cancer Diaries, and Emily Hourican finds herself in 'a deep morass of dreariness'

Emily Hourican

If my current life and illness were to be considered as metaphor, a kind of Pilgrim's Progress of the body rather than the soul - and frankly, sometimes I find it is easier to think of it like that, embellished by significance, rather than to take on the simple, dry fundamental facts - then this week would be my Slough of Despond. A deep morass of dreariness, like thick mud that clutches and pulls at me as I try to wade through it.

Each day I get up, have breakfast, and go into hospital. Some days are short - a quick visit to the radiotherapy room, 20 minutes on the table, in the mask, which seems to get more sore and unpleasant every day rather than less so, then out and home. Other days are longer; meetings with consultants or drug drips to be factored in. But in a way, length of time makes no real difference. Because the days all feel the same, even the ones where I'm done by 10am, technically with the rest of the day in front of me. The flavour of the hospital remains, bleeding into everything. A friend, when I described the dreary rhythm, said, "it's like the worst job in the world." That is exactly what it feels like. The worst job in the world: relentless, joyless, unproductive, unavoidable. Unpaid. And I can't even call in sick.

When I'm not actually in hospital, I am beset by a round of Things I Must Do to try and delay the onset of the worst side effects. There are endless mouthwashes to swill - I'm up to three different kinds a day, all on heavy rotation - fluoride trays to apply to teeth to protect them, a considerable amount of brushing, flossing, etc, for the same purpose, menus to plan - food that will be nutritious and calorie-dense, but not too spicy or exciting in case it occasions the need for yet more mouthwashes - soothing cream to apply to the radiotherapy rash, which is like a mild sunburn at the moment, and then, on top of that, my own schedule of things I am determined will help me through: wheatgrass to juice, fresh air and exercise to pack in, yogic breathing, meditation, some decent time with the kids that isn't all about cancer and cancer treatment.

The smell of the hospital travels home with me, on my clothes, in my hair, on my skin, and waits for me. No matter how much lavender oil I sprinkle around, the smell lurks underneath, so that when I come into my bedroom after an absence, my heart thumps suddenly, an unpleasant lurch of fear that startles me, causes me to think 'What? What is it?' in alarm. Until I realise. 'Ah yes. Hospital.'

So deep is this week's Slough that I am reduced to making a checklist of Reasons To Be Cheerful, writing these down and ticking through them. The list starts with 'I could feel worse . . .' And moves on, through 'at least I'm not missing any nice weather', 'the kids are having a fun Christmas thanks to all the nice people taking them out' and 'who knew the world was so full of kind, lovely, thoughtful people, prepared to write to me, dedicate masses for me, send me rosary beads and love?' After that, I kind of run out of steam. And so I go back to 'I could feel worse.'

And I could. Much worse. Presumably I will, but right now, this is all more depressing than it is anything particularly dramatic. The colours of my new world are grey and sludgy. Like a paint box where all the lively reds and yellows and blues have been mixed in together, blending into a sad, dirty, indeterminate kind of colour.

I'm trying hard for my usual Pollyanna-ish state of constant optimism and good cheer. But I have begun to discover that it has serious limitations. Actually, it seems to be based on equal parts energy and the simple, undemanding belief that, in bad times, tomorrow will be better than today. As a worldview, it is entirely unsophisticated, not the product of deep thought or careful philosophising, just basic animal spirits. "A good night's sleep will sort me out," I have always believed, "tomorrow will be better," and mostly, I have always been right. Now though, I can't say these things. Because tomorrow isn't going to be better. It is going to be the same, at best. Quite possibly worse.

But right now it is the sameness that bothers me. Day after day stretches in front of me, the already well-trod path from my house to St Luke's, the diminishing returns of pleasure I take in the handy distance - 13 minutes on average - into the hospital, onto the bed, deep breath, mask on, many deep breaths, mask off. "See you tomorrow, you're doing great," until I want to scream.

Actually, there is another thing on the list Reasons To Be Cheerful - I have been put on an antibiotic for the spots. They haven't gone away, not by a long shot, but the antibiotic has taken some of the misery out of it. The frantic urge to itch is mostly gone, the hot, sore pulsing is mostly gone.

I still look like a teenager - not in a good way - but I feel slightly less hideous. I even feel robust enough to turn over in my mind the question: skin or hair? Which would I mind most, losing my hair or being covered in spots? Really, it's a matter for the kids, and which they would mind the most. They are well aware of the spots - "you look like the goblin king in The Hobbit film," said the middle one cheerfully; this, I understand, is not a compliment. The youngest said, "you have even more spots today, mummy," almost as if she was congratulating me. On balance, they seem more kindly curious than repulsed or upset. I'm guessing baldness would shock them more, and so I must assume that spots are the lesser of two evils.

I tell myself I'm two weeks in now, although I'm not really, not quite. Even by my overly-optimistic calculations, that's five more weeks to go. I am still only trudging through the shallows here and already I can feel that I am shedding bits of myself. The non-essential bits perhaps, the decorative ones, but bits I like. The desire to make an effort to look nice; the energy to tidy up and make the house look nice; worse, my determination to be more interested in others than in myself.

At this rate, I risk turning into the classic stereotype of the invalid: self-obsessed, self-referential, constantly, anxiously turning over in my mind: 'how do I feel now? How do I feel today?' until it tunes out all the other voices in my life, the voices I am used to listening to, delighting in, far over and above my own. Almost more than anything, I hate that idea.

A few people have told me I'm brave to write this diary every week. But brave is relative. There are many different types of brave. Brave, for me, would be saying nothing. To tough it out silently and stoically, the way some do. My way is to tell. To talk. To explain the things that are happening to me and the way I feel about them.

I understand why others don't. Who still, now, keep cancer a secret. There are people who believe their careers and relationships will suffer for revealing something like this, something they feel might compromise them and their abilities in the eyes of those around them. Cancer was the disease that wasn't named for so long; 'a long illness' as it was known euphemistically in obituaries, 'the Big C' as many still refer to it in stagey whispers. As recently as the 1970s, in Italy and France it was common practice for doctors to tell the relatives of a cancer patient, but not the patient themselves, what they had. There was so much shame attached to the diagnosis that the doctors believed knowledge would hasten the patient's death. Until even more recently, there persisted the belief that cancer was the disease of repression, of passions undared and lives unlived; a body's vicious judgement on its inhabitor for a lack of courage and honesty.

Actually, some people probably still think that. But I don't. Cancer is a disease like any other. You get it because you get it. Either because you have a genetic predisposition, or because your lifestyle leaves you vulnerable. In my case, I got it because a virus that most of us have, that I have probably had for 20-odd years, somehow found the wherewithall to rise up and get active.

And there it is, another Reason To Be Cheerful - I don't feel any need to keep secrets. The effort of that, on top of the effort of treatment, would really do for me.

Sunday Independent

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