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Column The idea my daughter would see me waste away was the worst aspect of my cancer

The clichés we take for granted like “life’s not a dress rehearsal” take on renewed meaning after you have survived cancer. This second chance is one I won’t be squandering, writes Tom Molloy.

IN SEPTEMBER 2011, I was diagnosed with prostate cancer, three weeks before my 44th birthday. Following the revelation that I had an elevated PSA of 9 out of 10 and a biopsy result revealing a Gleeson score (measuring the aggressiveness of a cancer) of 9.5 out of 10, I thought my goose was cooked.

The news was presented to me in the Mater Hospital just 18 months after my mother passed away from ovarian cancer and 14 years since my father died of lung cancer. I had an uncle and a cousin (father and daughter) also battling cancer at the time. So I was under no illusions about the predicament I found myself in and what could lie ahead.

Between the experiences of my parents’ cancers and my discouraging PSA and Gleeson scores, all that remained was to have an MRI and bone scans that would confirm whether and to what extent the cancer had spread beyond my prostate gland. This measurement, I reasoned, would give me an indication of how long I would be given to live. My late father had been given three months but he only got half that.

The waiting game

There would be a few weeks between diagnosis, having the scans and getting the results. The longest, darkest time of my life. While I had no fear of death, the prospect of my 6-year-old daughter seeing me waste away and die, and then grow up without me, was by far the worst aspect of the whole cancer experience. Recalling it today still has an effect on me.

So, with my troubling diagnosis delivered and a waiting period for scan results ahead, the task at hand was to educate myself about my cancer. The first port of call was the Daffodil Centre in the Mater Hospital. I was still in shock from my diagnosis so it was all a bit surreal. But in the Daffodil Centre I spoke to an Irish Cancer Society volunteer, the first person outside my family to whom I uttered the dreaded words “I’ve just been diagnosed with cancer”. She was very sympathetic and supportive, as much as you can be. It’s not an easy thing to do, reassuring someone whose world is imploding.

Given the severity of my diagnosis and memories of my parents’ cancers, I was not receptive to what you might call ‘false hope’. I just wanted the facts, without sugar coating. I believed that time to indulge platitudes and clichés was a luxury I did not have.

I left the Daffodil Centre with an armful of Irish Cancer Society information booklets on the various aspects of prostate cancer, its various treatments and their side effects. While making for grim reading, the booklets told me everything I needed to know about my cancer and how it would be treated, from a medical perspective at least. I now knew what to expect and, as it turned out, what I read was all borne out by experience. The information was accurate and it helped me to prepare for what lay ahead.

Preparing for death

Convinced that I was going to die from my cancer in the not-too-distant future, I was most concerned with how I would deal with it mentally, preparing myself and my family for what I believed to be my probable death.

The prostate nurse and Daffodil volunteer had both strongly advised me to ring the Irish Cancer Society helpline, to talk to somebody about my diagnosis and what lay ahead for me. It is a very difficult thing, to pick up a phone for the first time to ask for support with your shiny new cancer diagnosis. How do you start a conversation like that? When I mustered up the nerve to ring the Cancer Helpline, I spoke to Margaret.

It was Margaret who managed to give me a sliver of hope to cling to. I explained my PSA, Gleeson and family history, expressing my belief that the odds of survival were not in my favour. Margaret was very good at her job because she did not respond with hackneyed platitudes that would just have alienated me. Margaret explained to me the concept of a cancer that is “locally advanced”. Even with my exceptionally high PSA/Gleeson scores it was still plausible that my cancer could be confined to the prostate gland. If the MRI and bone scan results confirmed this, then the odds for my survival would improve significantly.

So “locally advanced” was my new favourite buzz word. It was the one good card I held in what was really a crappy hand. Before finishing the call, Margaret offered to put me through to a volunteer from Men Against Cancer (MAC), a support group of men who have been diagnosed with prostate cancer. My head was still reeling so I didn’t take Margaret up on it at the time, though I have since had a good deal of contact with MAC.

The power of support

Margaret advised me to contact the ARC Cancer Support Centre in Eccles Street, where they ran free yoga classes for men with or recovering from prostate cancer. The yoga would help to prepare me for my surgery and I’d also get to meet men who have already been through the process. Ringing the doorbell was another milestone, since presenting yourself as ‘a cancer patient’ takes some getting used to. But once I did I was glad of it. I spoke to some ARC volunteers who had personal experience of cancer and I booked myself in for a yoga session.

It was at ARC that I learned of other men who had similarly high PSA/Gleeson scores and survived.  By now, I was beginning to hope that maybe, just maybe, my diagnosis might not be a death sentence after all.

A couple of weeks later, I was called in to the Rapid Access Prostate Clinic in the Mater, for the results of my MRI and bone scans – the moment of truth. The news was what I hadn’t dared to hope for – there was no evidence of cancer cells outside my prostate gland. My cancer was “locally advanced”.

Since being diagnosed with cancer I have maintained that you would be amazed at what you can be grateful for. Being informed that I had a large, malignant tumour in my prostate but nowhere else in my body was like winning the lottery. It ranks as one of the best days of my life, when the chances of my being around to see my daughter grow up improved.

A few weeks later, I’d had my surgery and within a week of being discharged from hospital, I was at the Prostate Cancer Patients Conference in Croke Park, hosted by MAC and the Irish Cancer Society. Here, I got to meet many more survivors and their loved ones. Such gatherings are truly remarkable for the wisdom and love of life to be seen and felt.

The wonder and opportunities in life

It is now 17 months since my diagnosis and I am cancer free. I have quarterly tests and consultations to monitor my recovery. So far, so good. In these 17  months, I have changed. The experience of confronting the prospect of your own death is transformative and life is never the same afterwards. While the cancer could return, I could also be hit by a bus or choke on a chicken bone. I now appreciate that life is just a temporary little arrangement and I will die eventually. That is a certainty that everyone lives with, even those among us who don’t really ‘get it’.

I don’t know how or when I will shuffle off this immortal coil. What I do know is I am damned if I’m going to spend whatever time I have left in this world in fear of what may or may not happen. The clichés we take for granted like “life’s not a dress rehearsal” take on renewed meaning.

Six months after returning to my job of nine years, following my treatment, I decided I was too much in my comfort zone. It was not where I wanted to be, after being been given a second chance, with a life ahead of me to be lived as master of my own destiny. So I packed in my permanent, pensionable job during a recession to go out on my own as an IT project manager. It’s a risk but “feel the fear and do it anyway” is another cliché that has new meaning for me now.

The things we regret most are more often than not the things we never did, whether from fear of the unknown or being stuck in a rut. Surviving cancer and getting a second chance is liberating and an opportunity not to be squandered. It’s a pity that human nature is such that, for most people, it often takes survival of something terrifying to truly see the wonder and opportunities in life.

I now feel a duty to give something back, such was the effect of the support I received from good people in the Irish Cancer Society, ARC, MAC, the medical and nursing staff in the Mater hospital and, most of all, my fellow prostate cancer patients and survivors. There is also the memory of my late parents, an uncle who since lost his battle with cancer and all other cancer patients and their families.

Coming from the dark place I was in 17 months ago, I continue to be amazed at what I can be grateful for.

Tom Molloy is an IT project manager and prostate cancer survivor.  He blogged about his experience of prostate cancer at ww.tommolloy.com.

For more information please call the Irish Cancer Society on 1800 200 700. To get involved in Daffodil Day this year please call 1850 60 60 60.

Column: ‘I was in work one day and diagnosed with cancer the next’>

Read: ‘Cancer leaves you feeling harder on the outside and softer on the inside’ – Áine Lawlor>

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