Emily Hourican's cancer diary: I just want to go home, to my three kids, back to work, back to my life
Last year, on the 23rd of December, my 43rd birthday, I spent half the day wondering, sadly, how I got to be so old.
Wondering how I could have come so far from my youth, looking for signs in the mirror of the toll taken by that journey. My children didn't cheer me up, nor my husband, nor telling myself how lucky I was. Eventually I jumped into the ice-cold sea, and that did the trick. A burst of endorphins displaced the vague low-level depression.
This year, I will spend the day getting radiotherapy, possibly chemotherapy too, depending on the schedule, for a cancerous tumour in the base of my tongue. I will probably have a mouth full of ulcers, a rash across my face and neck, no taste buds, no saliva, possibly no swallow, in which case I will be fed via a tube in my stomach. There are many more possibles - infection, dehydration, morphine, clinical fatigue - but I can't really take them in yet.
Yes. I have cancer. A quick visit to my house would probably alert some of you to that fact. It's the trays of wheatgrass on every window ledge. The brand-spanking-new masticating juicer, the equally-spanking-new Nutribullet (I was offered five, by kind friends. I think this may be the modern response to cancer 'Oh my God, that's terrible. Can I get you a Nutribullet?).
Everywhere is the hopeful, pathetic evidence of well-meaning attempts to turn back time; to reverse a disease that has already entirely escaped the confining properties of garlic, ginger, turmeric and all the other foods that are supposed to keep this from happening. They are my champions in this battle, but they must have been napping.
Their help is too late. I have cancer. One tumour, one affected lymph node. Despite being (quite) young, fit, healthy. Despite having given up smoking over 20 years ago and being a very modest drinker. Despite having no history of cancer in the family. Despite having all my life eaten lots of the good foods, very moderate quantities of the bad. Despite exercising often and being quite good at managing stress. Despite having three small children, a job, a life, and plans for the future that do not involve a round of highly toxic treatment that will leave me in the short term a thin, grey shadow of the self I am now, and in the long term beset by a range of possible side effects that I can't bring myself to think about.
The night my father died, I learned just how fast life can be torn apart. How flimsy our defences really are, all those slender webs of faith and hope and 'it can't happen to me' that we believe in absolutely, until they are torn away like thread. How in one instant the world you thought you lived in spins on its axis and resettles in strange new shapes around you.
I learned that again when I had my children, each new baby bringing a new reality with it. You would think I would have got the message by now. Maybe I have. But when the consultant told me, moments after I came round from a general anaesthetic after an apparently routine look at the lump I kept complaining about at the back of my throat, "you have a tumour. It's malignant," all over again I tried to hold the moment still, keep time from moving forward even the few seconds needed for that statement to become true.
Just like when my father died, I felt that if I could shut my eyes tight enough and force my mind to freeze, time would freeze with it, and the thing he had said wouldn't be true.
It didn't work. The thing became true much faster, more ruthlessly than I could hold it still. I started to cry then, still unable to sit up or even raise my head, still dizzy from the anaesthetic. A hand reached down from somewhere and patted my shoulder kindly. I don't know who it belonged to, but I am very grateful. Bad news makes us feel we are entirely alone, out there on some lonely, rocky outcrop, beyond reach. That hand showed me I am not.
"There are a range of treatment options available," the consultant said. It was all the reassurance he could give. He couldn't say 'it's going to be ok,' 'you'll get through this,' because he simply didn't know if that was true. Then he added, reassuringly, "you're young and healthy."
But clearly not young and healthy enough not to have got this in the first place. And so how am I to have faith in the rest of my youngness and healthiness? My confidence in who I am has been wiped out. I no longer trust in my youth and good health, although I would have put big money on it just a few hours before.
Someone leaned in to me: "Is there anyone you would like to call?" I rang my husband, who lost his mother and his older sister to cancer, and told him: 'I've got cancer. Please come...' Still cutting in and out of consciousness, they wheeled me into a hospital room where my husband was waiting. Almost immediately we began to try and reassure each other:
'It'll be ok.'
'He said 'pretty early'.'
'One bad year and then you'll be ok.'
'We'll get through it.'
'Am I going to be like John Diamond?'
It's my greatest fear. No tongue. No voice. Unable to taste or eat. Fed through a tube. John went to parties dressed in velvet suits and scribbled witty notes as fast as other people could crack one-liners. Apparently. I can't see myself doing any of those things. I can't see myself displaying the gaping hole of my mouth without the proper inhabitant of tongue, or some kind of shredded mess left behind by surgery. I can't see myself ever going out again. I don't even want to be the life and soul of the party, I just want to go home, to my kids, back to work, back to my life.
Later I find out that they won't be doing surgery, because of where the tumour is, and because they have faith in the radiation and chemo. This is good news. I am learning to take good news wherever and in whatever unfamiliar form I can find it.
There is more good news. The cancer I have is viral, caused by the HPV virus, the same one that causes cervical cancer. It is a common virus, at least 50pc of the population carry it, probably far more. And mostly it doesn't do very much. But, it can turn nasty, for no reason that anyone has yet worked out - all they know is that it is doing it more often than before. It can lie dormant in your system for 20 years, more, then one day it wakes up and gets busy. The result is cancer. But, a slightly different type of cancer, one that is very responsive to radiotherapy, shrinking without putting up too much of a fight. So, the prognosis is very good. And once I get rid of it, it is less likely to come back than other cancers.
I know I am lucky. In a way. Lucky because of what I have, lucky in the people around me; family, friends, comparative strangers who have been wonderful. And any amount of time spent in the cancer world, the place I live now, my 'new normal,' shows me that there is worse, much worse. There are people in this world, good people, who don't have the same kind of definitely hopeful prognosis. Who are living with far more uncertainty and fear than I am. Who may well have to find some way of saying goodbye to their loved ones. I have seen them; soon, when my treatment begins, I will be properly among them. I know that in comparison, I am lucky.
But I don't feel it.
Telling the children was awful in all the ways I expected. But it is done now and I think they are prepared for what is to happen, in the knowledge that I will be cured, that life will return to normal.
I live in a funny new world now, full of consultations and hospital waiting rooms, talk of 'outcomes', 'process', 'procedures'. Underneath those words are a whole range of horrible things that I try to put out of my mind. But every time I manage, I have to go to another appointment, where all the worst case scenarios and most hideous side effects are pointed out to me again, beginning with death and moving up from there.
Radiation treatment in the mouth is a pretty big deal it seems, in a way that it isn't when they are zapping somewhere like a breast. Presumably many of these horrible side effects will happen, but I will try to take them as they come, in the hope they will be reversed once treatment stops. Once away from the medical professionals, I reform the happy little bubble around me: 'it'll be fine'. And then another appointment, another consultant, another set of side effects and might-bes crashes in, bursting it, leaving me exposed to the freezing winds of 'what if...'
Familiarity is what breeds good cheer and confidence. There is nothing familiar about any of this. It is new, alien, and therefore terrifying. I am terrified.
On one level, I feel a bit of a fraud. The offers of help are flooding in, lasagnes (the currency of kindness) are arriving regularly, the kids are being asked on countless play dates and treats, and I don't even feel sick. Apart from a slightly sore throat, and some days a touch of ear ache, I feel entirely myself. Apart from the fear and sense of doom on the horizon. I sleep well, eat well, I am full of energy. This just makes everything seem even more perverse. I guess it's like dry rot - you can't see it, but once you hear those words, you know you are in for huge trauma.
I am trying not to let the fact that it's nearly Christmas make this worse, because that's just silly. This is what it is at any time; a bunch of twinkly lights and other people's excited plans shouldn't make it worse. But they do, a little. And there is still a part of me that is still disbelieving, waiting for an 11th hour reprieve, waiting for the call from the governor: 'I'm so sorry, we've made a mistake…'