Over 2000 men are diagnosed with testicular cancer each year in the UK. In 1996 I was one of them. Nothing has such a profound and lasting impact on you as a cancer diagnosis. It is the bluntest and most powerful force you will encounter in your life. It speaks brutally and lastingly for itself.
Let’s be clear that I was one of the lucky ones: my tumour was relatively small and I escaped the extensive chemotherapy handed out to the other patients on the oncology ward. But it was the defining event of my life – everything that followed I saw (rightly or wrongly) through the prism of that experience. I was 21 when I was diagnosed and some sixteen years later I’m starting to see how the experience twisted my life out of shape, what it took from me and the minor things it gave.
Pre-cancer you are mostly all mind. By that I mean your moods, wants, feelings, desires dominate your waking time. Your body is a quiet, unobtrusive vessel that transports you from one event to the next – a walk to the shops, tennis in the park, a job interview, a first date. From your point of view, Mr/Ms Body has always functioned well and always will. Your health will always be robust. As we grow older, of course, we start to understand that this is not the case – backs start to ache, arthritis interrupts, and grey hairs invade. But for most of us, most of the time, we are all mind, especially when young.
When cancer comes it violates this perception, unmendably and without remorse. I was standing in a lukewarm shower in the month of February 1996 when my left hand brushed against a small lump on one of my testes. The hot water tank still gurgled. I could hear my family still laughing and joking in the living room. Stray cars still buzzed up a distant A road. But the profoundest thing had just occurred: my body had turned against me. Cell division (once so benign an activity) had become a thing of fear. I turned the shower off, dried myself slowly, all the time telling myself not to worry. I checked again – definitely a small but persistent lump.
I was standing where thousands of cancer patients have stood before me – at the beginning of realisation. Lots of cancer patients talk about ‘an icy hand’ on their shoulder at this moment of discovery. I think it’s less a fear of the illness but a horrible realisation that the control you thought you had over your life is completely illusionary. You begin to sense the blunt and persistent truth that we are all at the mercy of biology, of genetic tendencies handed down to us from relatives long dead. Our life of the mind is made of straw.
It was certainly this lack of control which scared me the most. The true meaning of your personal destiny is starkly revealed – it depends not on how well you do in exams, what jobs you get, who you fall in and out of love with. The true meaning of destiny is now decided by a team of oncologists, radiographers, and nurses, all professionally trying to isolate and eliminate an unwanted occurrence of cell change. All you have to do is lie flat and still on the surgeon’s table; not to move as you pass under the huge Polo Mint of a CT scanner. Part of cancer’s cruelty is how it de-personalises you.
My surgery took place in November 1996. All the ultrasound scans pointed to an abnormality that needed immediate investigation. ‘I’m very concerned’ were the words of my urologist. He was right to be. Under the microscope the cancer proved to be aggressive and without knowing how far it had spread my surgeon (a little unwisely in the opinion of my oncologist) started speculating on the odds of recovery. They were on the low side.
The CT scan was done and I had to wait seven days for the results. Waiting is part and parcel of the cancer patient’s life. And it’s the thing that can break you in the end. Waiting for CT scan results; waiting outside the oncologist’s room for your annual check up; waiting to see if the phone rings on Monday because that’s the day the blood tests for tumour markers come back from the lab. Waiting for your life to begin again or waiting for your worst nightmare.
The first big wait of my ‘cancer career’ came at the end of November 1996. I waited in a mixed cancer clinic with other people waiting. Waiting, wanting it to be over but dreading everything. Waiting for the nurse to come in and call your name. Waiting as the oncologist asks you to sit down, examines your notes and makes a pronouncement. Waiting before wondering at the sight of things changing. My own news was good – the cancer hadn’t spread to the blood cells. I needed monthly check ups and three monthly scans. Most cancers return in the first year. More waiting then but at least the starting point was positive.
And as grateful as I was for this news (and I was VERY grateful) I started to fall apart. Everything that had happened because of the diagnosis bore down on me – losing my funding for my higher degree at Hull University; losing my girlfriend who couldn’t cope with what was happening to me; losing my self esteem and confidence. These were the surface sorrows but underneath I was coping with the huge existential shock cancer delivers. Bad things can and will happen to you. Just because ‘you are you’ doesn’t spare ‘you’. ‘You’ didn’t know it before but you are really adrift on a freezing sea of probability and risk that your actions are powerless to change.
This is a stark revelation and one of the major causes of depression in young cancer patients. I didn’t cope well with it. I was terrified, angry, teary, elated, and passive in equal measure. I started seeing the oncology counsellor and was prescribed powerful anti-depressants. At the very least the sessions gave me an outlet for the endless, overwhelming fear. Whether I’d have reacted differently if I was older is open to conjecture. When you’re twenty-one this revelation is just too big a morsel to swallow. It takes a life time to digest and you never really get over the frightening implications.
Like most twenty-one year old males I was preoccupied with girls and sex. Testicular cancer strikes at the core of your male libido and I was convinced I’d be impotent for life. The surgeon warned me about the possibility of erectile dysfunction and offered me a ‘false’ testicle to help preserve my body image. At the time I was preparing myself for the real possibility of several cycles of chemotherapy so politely declined (no more surgery please!). But I was desperate to avoid the impotence.
It wouldn’t be honest to say I was stoic in the months that followed. I clung to my parents desperately and never wanted to be alone. Every month I was convinced this would be the month the blood test showed elevated tumour markers (a sign the cancer has returned). During my second ‘routine’ CT scan the radiographer thought he had spotted an abnormality and injected dye into my veins to make sure. It was an innocent blood vessel but each scare was like the creak of thin ice underfoot.
But slowly the months move forward and with the absence of bad news you regain a sliver of confidence. You think maybe, just maybe, you’re going to get through this. You still distrust thinking or talking about the future. Bad luck is not to be tempted in. But gradually the months become years until a decade’s worth of clear blood results pile up in your oncologist’s folder. When I was discharged in 2006 I wanted to cry with relief but nothing came. The experience had left a deep and permanent divide in my life – the pre-cancer ‘me’ and the person for whom everything’s ‘just afterwards’. That person had been conditioned by a decade’s worth of anxiety and didn’t cry easily.
And the big question for those of us who are lucky enough to survive (and we ARE lucky!) is how do you live your life? What reaction and attitude is equal to the blessing you’ve received? All the cliches crop up here: ‘savour the moment’, ‘live life to the full’, ‘never let life get you down’. But cancer survivors (like everyone else) are at the mercy of life’s stresses – they have bills to pay, careers to build, children to raise. And sometimes the sweet blessing of survival can be a burden. Why are you getting stressed about the car breaking down? Why can’t you just walk out the job you hate? Why can’t you do all the things facing death should give you the freedom to do? And the unspoken fear underneath it all: what if IT comes back? This would be the ultimate measure of how you’ve spent precious years of good health.
Each person has a different way of dealing with life ‘afterwards’. And what about me? The cancer certainly made me less anxious about how others perceive me – I became bolder with jobs and more confident around the opposite sex. Not ‘wasting time’ became the relentless mantra of my twenties. I never forgot the creak of thin ice underfoot. But from the vantage point of my late thirties I can see the anger at the unfairness of my diagnosis masqueraded as confidence. It got me jobs but it was borne of an unhealthy energy.
As the songwriter Tom Waits once sang: ‘You can’t un-ring a bell’. The stark awareness of your own mortality that comes with a cancer diagnosis is freeing in some respects, yes. You worry less and try to ‘live well’. But you are forever cast out of Eden. Once you know, you know. One of the biggest sadnesses of my life is that I wasn’t naive for longer. Twenty-one was very young. I do wonder what different choices I’d have made if I’d lived my twenties without this thing called cancer walking a few footsteps behind me. I’ll never know what it’s like to go out into the world with a young person’s heart, and to live unencumbered dreams.
© 2012 Stephen Baker. All rights reserved.