I was so thrilled I was going to live

Katie Verling was given a bone marrow transplant after being diagnosed with leukaemia. She tells her story to Sylvia Thompson

IT ALL started with a pain in my back in May 2007. I had been doing a lot of work in my garden and thought that I might have strained it. I went to the doctor who prescribed anti- inflammatories. I rested for a few days but the pain didn’t go away. Over the following five weeks, I went to the doctor four times and to the physiotherapist twice. The pain just wouldn’t go away and I was referred to a small hospital in Limerick to have it checked out. There, I was given more anti-inflammatories (which were burning my stomach at this stage) and sent home.

I couldn’t sleep because the spasms in my limbs were so intense. I couldn’t even turn in the bed. During the day, I found it difficult to move around (later, I realised that all my lymph nodes were enlarged which had been causing the pain and making it difficult for me to move about).

Eventually, one evening after I had been to an after-hours doctor who had given me a morphine injection, I went to the AE department of Limerick Regional Hospital, still in dreadful pain.

That was midnight on July 5th, 2007. There, I was given X-rays and blood tests. At 10am the next morning, a consultant haematologist came to my bedside and told me that I had leukaemia. I was taken by ambulance to the National Bone Marrow Transplant Unit at St James’s Hospital in Dublin the next day.

At first, I was relieved to have a diagnosis. Up to then, I hadn’t been able to understand why I was in such pain. I thought I was having a nervous breakdown. In fact, I had Acute Lymphoblastic Leukaemia (ALL), which is very rare in adulthood. It’s a childhood disease and only about 15 adults in Ireland get it each year. It’s a type of cancer which develops very quickly.

In St James’s Hospital, I was given a bone marrow test to see if I would be suitable for a transplant. The following day I started chemotherapy. The treatment for ALL is very intensive and the first six weeks of chemotherapy are crucial. I was a patient in Burkitt’s Ward which is a ward with 20 single bedrooms, each of which has its own bathroom. There is also an ante room where visitors leave their belongings, wash their hands and put on plastic aprons before visiting a patient.

During this time, I had to have another bone marrow test to check how I was responding to chemotherapy. I had responded well and was deemed to be a suitable candidate for a bone marrow transplant. I was allowed home for a few weeks.

I returned to St James’s for another series of chemotherapy sessions – this time, the medicine was injected directly into my spinal fluid in order to reach my brain cells. I suffered from terrible nausea and some hair loss during this treatment. I also had a weird taste in my mouth and slept badly. The care and attentiveness of all the staff helped me cope. Everyone from the cleaners to the caterers to the consultants was wonderful.

For the next few months, I was being “worked up” for the bone marrow transplant. I was back home in Limerick during this time. I suffered a lot of side effects from chemotherapy, the most serious of which was a toxic reaction which manifested itself like a stroke – I couldn’t speak, I couldn’t swallow and I wasn’t making any sense. I was brought straight to Limerick Regional Hospital and sent to St James’s Hospital from there by ambulance. The symptoms started to abate within 24 hours.

As part of my preparation for the bone marrow transplant, I had to go to St Luke’s Hospital in Rathgar to be measured up for full body irradiation. Then, I spent the next three weeks at home feeling really well. In fact on November 29th (a few days before my operation), I felt so well that I asked the consultant if I really needed a bone marrow transplant. He said that if I didn’t have the operation, the cancer would return within three to four months.

For the next 48 hours, I was on a chemotherapy drip. Then, I was taken to St Luke’s Hospital to have full body irradiation. That’s a very scary experience, yet it’s painless. That day, my brother came into the hospital and had one litre of bone marrow harvested from his pelvis (normal bone marrow regenerates itself within two weeks). Soon after, his bone marrow – which looked like gloopy blood – was transplanted into my body via a drip. I remember thinking that this was an extraordinary experience.

I spent the next month in strict isolation at St James’s Hospital. Every day, a blood sample was taken to check how I was doing. I was sleeping a lot and taking a lot of medication to reduce the nausea and the pain. On day 21, the transplanted bone marrow began to reproduce in my body. This was a cause of great celebration. There were whoops of joy from the staff and we were all congratulating each other. St James’s Hospital does about 50 such bone marrow transplants every year.

My dream now was to get out of hospital for a few hours on Christmas Day. This dream came true. I met up with my brother, his wife and children and the brother who had been my bone marrow donor. I was bald as a coot, really weak but euphoric. I hadn’t been afraid of dying, but I was so thrilled that I was going to live.

I was allowed out of hospital on New Year’s Eve, but attended every day for six weeks for blood tests and other treatments. The hospital has a very good oncology/haematology day unit. I had to go back into hospital a number of times over the next nine months due to infections. I got clostridium difficile twice and was in hospital for seven weeks in the summer of 2008.

In March this year, I was given the all clear to go back to my job as director of Glór Irish music centre in Ennis, Co Clare. This was 22 months after my diagnosis. Although I was given an extraordinary welcome by my colleagues and customers, it was really weird to be back at work. In many ways, life in and out of hospital had become the norm for me.

Now, eight months later, I can still work only three days a week. I get very tired and often have to go straight to bed when I get home from work. I was so full of energy before, so I find it difficult not to be the person I was two years ago. My body has been damaged by all the treatment I’ve had. My immunity is low, so I’m prone to infections. I’ve had to get my childhood vaccinations again as their effectiveness was wiped out by the chemotherapy. I got the seasonal flu vaccine a few weeks ago and the swine flu vaccine last week.

I became fascinated by the healthcare system during my illness. All my care was within the public hospital system and I believe it could never have been afforded by a private hospital. I even got to do a course of mindfulness meditation to help me cope while I was a patient in St James’s Hospital. I also participated in an arts project while there.

One of my strongest memories of my whole time in hospital is the great camaraderie between patients and staff. I’m as healthy as a trout now and I genuinely don’t regret having had this life-threatening illness.