Michael O’Regan: I have learned to talk about cancer

The phone call to tell me I had been diagnosed with cancer was not a complete surprise. I had long been dealing with symptoms pointing to the possibility of serious illness.

They were familiar to me because of the prevalence of cancer in the extended family, deadly in its target and with little regard for age or previous good health. I had also observed friends and colleagues deal with the illness.

The call came on a July evening last year. I was at work when my mobile phone rang at 6.30pm. Tests had revealed a tumour in my right leg.

It was to be the first of two cancer diagnoses.

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The symptoms, mainly bouts of chronic fatigue and back pain, had plagued me, but I had hoped the explanation for them might be otherwise.

Although not entirely unexpected, the news was devastating. I had been diagnosed with an illness that today carries as much fear as tuberculosis did in the early decades of the new State.

Being sent to Dublin from Kerry for cancer treatment was once viewed as a death sentence. Sometimes cancer was referred to not even by name in hushed conversations but as 'the bad thing'

I grew up in rural Kerry in the 1960s, hearing stories of communities and families ravaged by TB, tuberculosis or “galloping consumption” as it was known.

As the threat of tuberculosis subsided, and cancer became the new health terror, being sent to Dublin from Kerry for cancer treatment was viewed as a death sentence, although it was not always the case. Sometimes cancer was referred to not even by name in hushed conversations but as “the bad thing”.

Much has changed since those times. The cancer hospital I attended in south Dublin, when my own diagnosis came, was modern and bright, and staffed by people of extraordinary skill and kindness.

A nurse spent a long time with me explaining the illness and the treatment. I availed of the counselling service, and I had a reassuring cup of coffee with the hospital chaplain, an acquaintance from way back.

At the time of my diagnosis, I knew treatment for cancer had come a long way. But I knew little else.

More than a year on, and still receiving treatment which is going well, including dialysis three times a week, I have come to realise that while cancer can be a brutal and frightening illness with serious consequences, it can also be treated and coped with. Sometimes the biggest fear is fear itself.

Above all I have learned to talk about cancer, something I was unable to do when I got that fateful call to tell me I was its latest victim.

The terrible fear of the illness, and the impact it has had on so many people down through the generations, made me unwilling to open up about it. But I learned in time how to talk about it, to my benefit most of all.

THE SYMPTOMS HAD BEEN something of a morbid sideshow in a busy life as I dealt with other health issues, including eye trouble, genetic in my case, which was sorted by surgery.

Perhaps a warning shot was when a cancerous polyp was found in my colon during detailed medical tests.

As time went on the bouts of fatigue worsened. Walks in the local park in south Dublin, where I live, became shorter as energy levels declined. Targets set for a walking holiday in Connemara were not met.

Initially the back pain appeared to clear up after treatment. But it returned, and it now seemed as if every bone ached. The pain was terrible, and conventional treatment failed to provide any relief.

Covering a politician’s funeral I stood with my back to the church wall to relieve the pain. Mourners must have thought I had literally become a pillar of the church.

I gobbled painkillers in advance of a political interview for television, and while the relief was great it was short-lived.

Matters came to a head when I woke early one morning to find a lump just above the knee on my right leg. I made an immediate appointment with my GP, and a scan revealed the tumour, which was treatable and would require a course in radiotherapy followed by surgery.

Fighting the fatigue was the first of my mistakes, and bad judgment in dealing with my illness. Early on I told few people about my cancer diagnosis

I had back surgery, unrelated to the cancer, before beginning the five-week course of radiotherapy in August of last year. In time I would discover that, apart from routine back problems, the pain was an ominous sign of something much more serious. But that was down the road.

I travelled to and from the hospital for radiotherapy on summer days of glorious weather. I developed a routine of having a coffee after the treatment, before going home to rest.

Initially I tried to fight the fatigue but eventually gave in on the advice of the radiotherapists and rested.

Fighting the fatigue was the first of my mistakes, and bad judgment in dealing with my illness. Early on I told few people about my cancer diagnosis, concentrating instead on the back surgery to explain my absence from work and social events.

I even started planning a timescale for a return to work. Mark Hennessy of The Irish Times and Jerry O’Sullivan of Radio Kerry advised me to get well first and then resume work. It was good advice, but it took me a while to grasp it.

AT THE BACK of my mind was how people like RTÉ's Tommie Gorman and the former rugby international Tony Ward had handled a cancer diagnosis. Tommie had made a television documentary on his treatment, and I had heard Tony on radio telling of how he overcame his initial reluctance to talk about his cancer.

Soon I began to open up to people who asked about my health. I discovered that not talking about your cancer is much more stressful than talking about it.

I recall being wheeled into theatre, on the morning of surgery in October, and gazing out the hospital window at the vast expanse of the city in the distance. The clock said it was 9.07 am.

The surgery was a success, and the tumour was removed. This was great news, but little did I realise what lay ahead.

I LEFT HOSPITAL, spent some time in a nursing home, and then returned home. I felt very unwell but I put it down to the aftermath of the treatment and surgery. I was in pain.

I was rushed back to hospital in December after routine blood tests. My kidneys had failed; I had other health issues. I was put on dialysis and underwent tests.

I was later moved to a nearby step-down hospital, where I would spend three months. I remain forever grateful to its wonderful staff, as I am to all the people I have met in my contact with five Dublin hospitals and in the public health area over the past 13 months.

I was taken from the step-down hospital to and from the acute hospital a few times weekly for treatment, usually in the early morning, sometimes with other patients. The drivers, David and Jerry, were unfailingly efficient and kind.

The tests continued. My energy levels plummeted.

There were times when I refused to accept my weakened state, stubbornly ignoring the advice of medical professionals not to fight the inevitable fatigue caused by serious illness.

EARLY ONE MORNING I failed to make it out of the hospital bed. I was in terrible pain. I fell back on the bed. I tried a second time, in a rage against my infirmity, and again collapsed on the bed, defeated this time, all physical and mental reserves spent.

Various questions raced through a confused and agitated mind. What had gone wrong? Where was my recovery? The odds, once so firmly stacked in my favour, appeared to be deserting me at an alarming rate.

Had I not served my time with this awful illness, having been stalked by its symptoms for so long?

This was not self-pity, nor a “why me” outburst. There is no room for that when you pass a young boy in the corridor of a cancer hospital, his face bandaged after treatment, or you sit with young women, one of them the mother of young children, in the radiotherapy section and hear them talking about their chances of survival.

I was in my 60s, having had a relatively privileged life and many years of good health. This was a rage against the diminishing odds for a recovery that seemed to be in my grasp a relatively short time earlier.

I was wiped out. My concentration went. I got days and times wrong. Books brought by visitors to the hospital piled up unread

A nurse gave me a painkiller and helped me to the shower. I made my way to breakfast with the aid of a zimmer frame.

I was happy to remain in the hospital over Christmas given my weakened state. The hospital authorities did a marvellous job. There was a tree, decorations, music. We had a pleasant dinner, and the mood was upbeat, if interspersed with inevitable moments of melancholy.

The tests continued. One day I got violently sick after dialysis treatment. Clearly something was terribly wrong.

A blood test was sent to France, and I was diagnosed with the blood cancer multiple myeloma, which was treatable and would require a course in chemotherapy followed by medication.

MY MORBID ASSESSMENT of my symptoms had, unfortunately, been correct. Literature passed on to me revealed excessive tiredness, lethargy, kidney problems and weakening of the bones as symptoms of multiple myeloma.

This was now the second spin on the cancer roundabout. I was wiped out. My concentration went. I got days and times wrong. Books brought by visitors to the hospital piled up unread. My appetite declined for a time.

There were bouts of insomnia. I seemed to always wake around 3am, reminding me of F Scott Fitzgerald’s chilling remark that in a real dark night of the soul it is always three o’clock in the morning.

There were times when I had great difficulty in coping with the scale of treatment, medication and seemingly endless medical appointments.

In time I would emerge from that dark valley by finally accepting that recovery from serious illness can sometimes be a long, tedious and painful process.

The nurses' strike came and went with the full support of the patients. Those overworked and underpaid angels of mercy ensured sufficient staff remained on duty to cater for patients while their colleagues were on the picket line

I had plenty of support from medical staff, family, friends, employer and colleagues. My daughter Deirdre, based in Washington, and my brother Frank, in Dublin, spearheaded a support network of sterling efficiency. But with any serious illness you must frequently draw on your reserves. Sometimes there is enough to sustain you, sometimes there is not.

Mobility improved somewhat as I underwent physiotherapy in the step-down hospital. But I was too unwell to leave to vote for Michael D Higgins in the presidential election, my first time not voting in my adult life.

“You will never forgive yourself if Michael D loses by one vote,’’ said a fellow patient.

The nurses’ strike came and went with the full support of the patients. Those overworked and underpaid angels of mercy ensured sufficient staff remained on duty to cater for patients while their colleagues were on the picket line.

I returned home and continued my commute to the acute hospital for treatment.

The days when I had a combination of dialysis and chemotherapy were particularly tough, and I would return home from the hospital exhausted, drifting into a half-sleep or sometimes a deep sleep.

THE SURGICAL WOUND on my leg was slow to heal because of my weakened state. It meant having a Vac machine attached to the dressing and a nurse calling daily to check on it. The Vac machine was cumbersome and heavy, and there were days I could hardly move with its weight and my lack of energy.

The occasional depressions could be severe, but tolerable if for no other reason than the knowledge that they would pass in time. There were moments of euphoria, sometimes unreal, when even the slightest progress was made.

Being able to shower again without assistance, tie one’s shoelaces, take a short walk, were a breakthrough to be welcomed.

A biopsy on my kidneys produced good results, although I remained on dialysis. I felt I had won the Lotto, not bad for somebody who had personally never done the Lotto.

I read The Irish Times online and the print edition and some good books. I listened to the radio. I availed of the escapism of daytime television, the black and white films of other decades, not least those featuring a personal favourite, Humphrey Bogart. Bogie, as he was known, saw me through some difficult times.

I gained much from reading about the experiences of others suffering from cancer in The Irish Times health supplement and elsewhere.

THERE WAS A PERSONAL highlight. My granddaughter Luna, the first-born to my daughter Deirdre and her husband Jeff Schroeder, made her way into the world in Georgetown hospital in Washington last July.

I put down her arrival to a stroke of good fortune given that it coincided with the removal of a cumbersome Pico dressing, which had replaced the Vac, for my surgical wound and its replacement by a conventional dressing.

Along the way there were moments of humour, sometimes dark.

In conversation with a fellow patient, I evoked the cry of the Irish in times of distress. “Is there no god there?’’ I asked.

“If there is he has a strange sense of humour,’’ he replied.

I told a visiting friend one evening of an experience I had in the acute hospital. I recalled how it was a Saturday afternoon and I was on my own in the ward and watched through the window as a ferry made its way out to sea in the distance. I had watched for a long time.

I told him I saw it as a metaphor for departing misery and pain.

A practical man, not given to speculating on the human condition, he looked at me and said nothing for what seemed a long time.

“You know, you have confirmed what I always thought,’’ he said. “You are a basket case.’’

We both laughed loudly.

SO HOW AM I NOW? Well, the dialysis continues. I have finished chemotherapy but am still on medication.

I feel I am over the worst.