My Health Experience: ‘I am happy to be alive’

In this extract from his book about his eight-year journey through cancer, Kevin Haugh talks about how he coped with the diagnosis, treatment and remission from non-Hodgkin’s lymphoma.

Kevin Haugh with Buddy in west Clare: During chemotherapy, Haugh felt like he had a permanent hangover. Photograph: Mary Haugh

Kevin Haugh with Buddy in west Clare: During chemotherapy, Haugh felt like he had a permanent hangover. Photograph: Mary Haugh

Tue, Sep 10, 2013, 01:00

The year 2004 was a momentous one in my life. As principal of Galvone National School in south Limerick, I welcomed President Mary McAleese to the school in January. My sons celebrated significant birthdays – Ronan turned 16 and Brian 21. My wife, Mary, and I celebrated our 25th wedding anniversary and I turned 50.

I started running again with the aim to do the New York Marathon in 2005. Even though my body had reached the half-century mark, I was a boy again at heart. While I was taking a shower after a training run on December 4th, I noticed a slight swelling of the glands on the left side of my neck.

I showed it to our family doctor on a routine check-up four days later and he made an appointment for me to see a consultant the following day. I was admitted to hospital two days later and a biopsy was taken the following morning.

At 7.50am, the morning after surgery, a doctor came to my bedside and said: “I see you have a tumour and there is a problem with your liver.” I was in absolute shock. The surgeon later told us it would be a week before he could confirm anything.

Devastated and terrified
On Tuesday, December 21st, my wife and I were told that I had non-Hodgkin’s lymphoma. We were both devastated and I was also terrified and angry. Although I realise now that the long-term prospects were better than many other forms of cancer, I was told at the consultation that the cancer could kill me. We cried until we thought our hearts would break.

I had a Cat scan, bone-marrow test and blood tests on December 30th. Results showed that I had stage 3B follicular lymphoma which meant the lymph nodes on both sides of the diaphragm were affected. The cancer had not spread to any of my organs.

I began a course of chemotherapy, which had a 95 per cent success rate. The bone-marrow sample was also free from cancer which opened up the possibility of stem-cell transplantation.

The weeks passed and the cumulative effect of the medication began to take its toll. My tastebuds were affected. My energy levels fluctuated. I had bouts of nausea, constipation, diarrhoea, abdominal pain, blinding headaches, blurred vision and difficulty concentrating. These experiences were compounded by night sweats and a foul body odour by day.

Often, my working day proved a welcome distraction. Externally, I presented as composed an image as possible and kept to myself the ravages of the chemical assault that was consuming me, physically and emotionally. Inwardly, I was shattered and terrified.

After the sixth session of chemotherapy, I had a Cat scan which showed I was responding well. I felt it was my ally because it was infused into my body to fight our mutual enemy. I envisaged my body excreting the dead cancer cells and believed this process helped keep me going. I had my final treatment of the first course of chemotherapy on June 8th, 2005, as Ronan began his Leaving Cert. On June 14th, our elder son, Brian left Limerick for Australia.

In July, Cat-scan results revealed that I had received only part remission. Consultant oncologist Prof Rajnish Gupta recommended a wait-and-see approach.

Meanwhile, I was offered a position of assistant national co-ordinator of leadership development in schools programme which would see me seconded from my job as principal for the next four years.

I had a check-up in August and the medical team was happy with my condition, scheduling my next appointment for 10 weeks away. However, on August 22nd, I noticed I had less energy than normal as I struggled to swim one length of the pool. My fears were compounded when I noticed a swelling in the left side of my neck a few days later and I began to suffer severe lower abdominal pain. Meanwhile, positive results from St James’s Hospital in Dublin gave me the option to pursue stem-cell harvesting.

I began a course of injections to stimulate the bone marrow in advance of stem-cell harvesting, where I had needles inserted into the veins of my arms and the stem cells removed. The blood was then returned to my body through a needle in my right arm (it takes over two million stem cells per kilogram of body weight for effective transplantation). This took three hours of remaining absolutely immobile for two days in a row.

At an appointment with Prof Gupta on September 26th, our worst fears were realised. The cancer had changed from a slow- growing one to an aggressive form called diffuse large B cell. I would need more chemotherapy between then and December.

Once more, I felt like I had a permanent hangover. The night sweats were worse than ever. It was tough going and I got progressively weaker and I grew bloated and lost all my body hair. I felt like I was in the closing rounds of a dog fight yet determined to fight on.

A series of six high-dose chemotherapy treatments were planned for early January to be followed by stem-cell transplantation in St James’s.

The morning after treatment, I looked in the mirror and didn’t recognise myself. I felt very weak and my enthusiasm levels were low. The stem-cell transplant had thrown my whole body out of sync yet the doctors were happy with my progress. All signs were positive but my body was at an all-time low and very vulnerable to infection. I needed to sustain my mental strength. I had turned into a human wreck and felt very angry at all the upset caused to my close family.

Learning how to cope
I spent the next weeks learning how to cope with the highs and lows before being released home from hospital in late January, 2006. From then on, my primary focus was to rebuild my mind and body – eating healthily, working on my mental strength and writing. My first visit back to the hospital was a positive experience with talk of putting me on Rituximab, a monoclonal anti-body drug to keep the cancer at bay. Although a Cat scan in early March showed that there was still cancer in my body, Prof Gupta said there was a great reduction in the tumour size. A Pet scan in the Mater hospital a few weeks later confirmed that my prognosis was good.

From April I had to take Rituximab to keep me in remission while I went back to work. I gradually built up my stamina by training for a local race. I completed the west Clare mini-marathon with my son Brian in January 2008 and the Clare 250-mile cycle for cancer support in May 2009. I returned to my role as principal of Galvone National School in September 2009. A year later, I resigned as principal.

Cancer diaries
One of the things I have done during retirement was to turn my cancer diaries into this book as a testament to my family and the good people who cared for me in the most difficult and traumatic period of my life.

I had my 20th and final maintenance treatment of Rituximab on March 2nd, 2012. At this stage, I am happy to be alive.

That is not to say that I take everything with a smile – I am still a cranky git and my fuse is shorter than ever.

Yet, this book was written to give hope to people afflicted by cancer and their families who might have to travel a similar route in the awareness that while the going might be tough, the rewards of remission make it all worthwhile.

An Imperfect Storm
by Kevin Haugh (Outside the Box Learning Resources, €14.95) will be launched on September 19th in Limerick city. All royalties will go to the Mid-Western Cancer Foundation.