Jan Gourley

Jan had been a fit and avid long-distance walker and cyclist. However, whilst on holiday in Spain, she found herself low on energy and breathless. She visited the hospital abroad where she received her acute myeloid leukaemia (AML) diagnosis, alongside pneumonia. Here she shares her Spot Leukaemia story…

“In March 2017, my husband and I were on holiday, dog sitting for a friend in Spain in a place just outside Benidorm. I was 69 at the time; I was an ultra-fit long-distance cyclist and walker and I used to pace myself for miles, that was until I began finding it very difficult going uphill.

Suddenly, I had no energy whatsoever. I’d set off and couldn’t continue. I was breathless when there was a sudden change. I couldn’t do these hills. I think if I hadn’t been so fit, I would have been poorly earlier. I was sure I would be fine if I paced myself and didn’t do any big hills as we planned to go home in five weeks.

One weekend I was out shopping when I came unwell with a very high temperature. There were lots of bugs going around at the time, so I put it down to that or some sort of virus. However, I felt so ill and it became clear we needed to go to the hospital. A friend accompanied me to A&E and I laid on a trolley for the day. By the time the evening came round, a doctor saw me. Her English wasn’t brilliant but she told me, “You’re not going home, we’re taking you in.”

They started treating the fever and I began to feel a lot better. The next day, I was eating my lunch and this lady doctor arrived with a translator and someone from haematology. She said to me, “You’ve got pneumonia and leukaemia.” We looked at each other and said, ‘Oh gosh’. We were gob smacked. Jack, my husband, was very upset. We rang my son in England and told him the news and he flew over and dealt with the insurance company. The hospital was fabulous. The doctor was treating me for pneumonia but emphasised that it was crucial that I begin the treatment for leukaemia. He recommended a transfer to Valencia but I knew I wanted to go back to Cardiff because of my links with Velindre Cancer Centre. He said that I needed to get home within days. So, my husband and son set off in the car back to Britain with all our stuff and I speeded off in a private ambulance to catch an air ambulance.

When we arrived in Cardiff, an ambulance turned up and took me to my local hospital, the Royal Glamorgan. It was nine o’clock at night. My daughter-in-law was there. The doctor did a blood test and the haematology doctor came to see me. The next day I was transferred to the University Hospital of Wales, where I had to go into a room on my own due to having been in a foreign country. I had my first round of chemotherapy and then developed a chest infection which they treated. This was the most painful thing I’ve ever had. Once I had recovered, I had two more rounds of chemo over the following weeks.

I also had a meeting to discuss having a bone marrow transplant. The doctor told me the level of cancer I had meant there was an 80 per cent chance the leukaemia would come back within a year but it was my choice if I wanted the bone marrow transplant. It took me a nanosecond to decide to have it. I can only praise the haematology team; the ward is just amazing and so professionally run.

Overall, it was a two-year treatment process. Finding a stem cell match went smoothly, of which was a 22-year-old German chap. However, going through the bone marrow transplant was the most gruesome thing I’ve gone through in my life. It was extremely difficult and exhausting, so I ended up sleeping most of the time.

On completing the transplant, I had to go to the day clinic twice a week, often for the day. This was the drill for the next 100 days; you get to know the doctors and nurses as you see them regularly which makes a huge difference. Knowing that if I woke up in the morning and I was sick they would say “bring her in,” and I would stay for the day or night, which would make the whole thing manageable. I felt totally secure in their care.

After many months, it was agreed my transplant was successful. I now attend the Velindre cancer centre in Cardiff, where they treat my recurring breast cancer. I go in every four weeks for treatment and a blood test. When I was going through my treatment for leukaemia, they provided the professionals with information about my cancer and treatment. Everybody works together.

Once I received my diagnosis, I was thrown headfirst into a different world. I didn’t know anything about leukaemia until I got to Cardiff. I don’t remember anybody telling me about it, except that I needed chemotherapy but to be honest, I was probably in that stage of not taking everything in. I never used Google to get information about my illness. I’m a great believer in talking to doctors – I think at the time I was only interested in being treated, not what my illness was.

If I ever have issues, I can ring the haematology team. I’m a great believer in not sitting around waiting for the hospital to come to you, you may have to ring them to find out what’s happening. Be proactive and be prepared to listen to the professionals and do what they tell you. That is so important. For instance, when I had the bone marrow transplant, you’re not allowed to go near soil, or to have flowers, so I couldn’t go in the garden. I think that it’s really important to do what they tell you. I had to regularly take my temperature as sepsis can become a major problem. Just work with the professionals that’s one of the best things you can do.

Two of the six most common symptoms are breathlessness, fatigue and low energy. Almost overnight, I lost my energy level. Thinking back, I know I started with the temperature which I can only assume was pneumonia. If I hadn’t had pneumonia, I would have carried on assuming I would be okay as I was fit.

The danger is waiting too long. I was lucky I got pneumonia, which got me into hospital and the blood test which identified my leukaemia, otherwise I don’t know what would have happened to me. It doesn’t matter if you feel fit – if you have any of the symptoms you need to get them checked out.”

Jan’s symptoms of leukaemia were:

• Fatigue

• Breathlessness

Are you currently dealing with similar symptoms to Jan’s? If so, contact your GP and ask for a blood test.

Early diagnosis saves lives.