How it started

On Monday evening, the 21st of January 2013, I got a sharp pain in my side. I thought it was just a cramp, but by eleven o’clock that night I was in agony and started to vomit. I went into Westdoc, the out-of-hours GP service, and it was suspected to be my appendix so I was sent straight into casualty.

The next day the doctors ruled out my appendix and admitted me to hospital for a scan. Following the scan my parents were informed there was a possibility that I had cancer, and they wanted to do a biopsy the following day, Wednesday. On Thursday morning the doctor confirmed that I had cancer in my liver, but that more tests were needed to confirm the type. It took five days before the doctors confirmed that I had Fibrolamellar Hepatocellular Carcinoma, an extremely rare cancer that affects less than 200 people per year worldwide. This cancer had never been diagnosed in Galway before, so the doctors consulted with oncologists and surgeons in Dublin, Cork and New York. After another few scans and tests, a decision was taken to operate on the cancer.

It was decided that the operation would be carried out in St. Vincent’s Hospital in Dublin. I was transferred from Galway to St. Michael’s Hospital in Dun Laoghaire while I awaited the operation. During the time between the diagnoses and the operation I was in a great deal of pain and felt very unwell.

The operation itself took place on Friday the 8th of February. It was a major surgery, and would be the second-largest operation that could be carried out in St. Vincent’s. During the operation the doctors removed a large portion of my liver (over half), all my gall bladder and 25 lymph node glands. The operation was a success. I spent a few days in intensive care and was very weak and unwell; however, each day I felt a little better. Over the next two weeks each day saw an improvement in my condition, and a scan on the 21st of February came back clear. The doctors confirmed that the cancer was completely gone.

Over the following two months I felt a bit better each day, and all of my liver function tests came back positive. All was going well. Towards the end of April I began feeling unwell, weak and tired, and I was admitted to hospital. Following scans and tests it was confirmed that the cancer had returned. This was devastating news, and a major setback. The cancer Fibrolamellar has a high recurrence rate, and the cancer was confirmed to have returned in my liver, kidneys and lungs. The doctors, who had previously advised us to consider visiting America about the cancer, told us that we should now go to America for advice. My parents worked very hard to get me the earliest appointment possible at Memorial Sloan Kettering in New York, one of the world’s leading cancer specialist hospitals.

On the 26th of May we left for New York, where I met with Dr Abou-Alfa, a specialist in Fibrolamellar cancer. He has been studying it for a number of years. His view was that it would be best to start a new treatment that’s only available in the USA. When the results of the scan came back they were positive in that the kidneys were cancer-free, and the liver and lungs had not changed since the previous scan.

It was decided to wait another eight weeks to see how I got on, so we returned home where I worked hard on my diet, paid regular visits to Eddie Stone and said lots of prayers. I felt far better during June and July, much better than I had all year. We returned to the USA in late July for another scan, and this one showed that my liver was now clear. However there were concerns over stressed lymph nodes in my chest. While the doctors wanted to start the treatment, I asked for another eight weeks to see how I got on. The doctor felt that this was too long, and requested that I return early in September, which I will.

There are currently two options open to me. The first is another operation, similar to the last one; this could be done in Ireland or America. The second option is a new drug only available in the USA. If I go on this treatment there may be a lot of side effects, and it will mean travelling to the USA once a month for a long time to come. This will, of course, be extremely expensive and we really need all the support we can get, so please spread the word.