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James Grigg

written by

Leukaemia Care, Charity

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In the winter of 2014 I was 36 and feeling unwell. I was getting dizzy, was always tired and generally rundown, but I was busy with work and thought it was just because of that. I also started to avoid going to the gym which was something I had always enjoyed.

After a particularly bad cold I finally went to the GP on a Tuesday morning. I didn’t know or suspect what was wrong, but I did think it was more than just a cold, so I asked for a blood test. The GP told me the results would take about a week, but when I got home that evening I had five missed calls from the surgery asking me to attend a 9am appointment the next day at the local hospital, St George’s in London, for more blood tests and a bone marrow biopsy.

On Thursday morning, I was asked to come back to the hospital to get the results. Most of that day is a blur but one memory is of my girlfriend crying as soon as she saw the Macmillan badge on the nurse, even before anyone had said a word.

I was diagnosed with acute myeloid leukaemia (AML). I didn’t know much about leukaemia; I thought it was a childhood cancer and I certainly didn’t know any of the different types. I remember asking how long the treatment would take and was told six weeks. I said that was okay and I could just about manage it. But the doctor was looking at me with a confused face, saying I had misunderstood and that I would be admitted to hospital for around six months of intensive chemotherapy and a transplant. I was going to need a bone marrow transplant if they were to cure it.

It all happened so quickly, from GP appointment to diagnosis, to starting treatment; it didn’t really sink in that I had a life-threatening illness. As I began my treatment both my sisters were tested to see if they were a match. I was lucky as my eldest sister was quickly confirmed as a 10/10 match. My first chemo treatment didn’t make me very ill but then it didn’t work either. Getting the bad results of that biopsy hit me harder than the original diagnosis. I was feeling very low anyway and now I was just desperate and wanted to be anywhere other than the hospital. Just four days after being released from my first round, I had to begin my second round of chemotherapy. This was different, a much stronger combination of drugs and the effects were immediate. It was tough and I was severely ill. I picked up a number of serious infections including C. diff and E. coli, losing nearly 20kg of weight and having to go into isolation.

Isolation was very difficult. Even though I had regular visits from friends and family, I was still very low. I had lots of books and DVDs as well as my iPad, but my concentration and memory were very bad. The pre- transplant meeting with my consultant was particularly upsetting, especially for my dad and my girlfriend who were with me – having your future boiled down to numbers and percentages is not easy.

In late August 2015, after four rounds of intensive chemotherapy, I had my transplant. I had some nasty side effects from the conditioning treatment, including severe nerve pain in my feet, as well as mucositis and the usual side effects. My sister donated on the same unit as me so I got to see her soon after which was great, but I was still terrified that I wouldn’t engraft. The doctors arranged for a psychologist to visit and she helped a lot.

At five weeks, the transplant turned out to be my shortest stay in hospital, and two weeks after the transplant I had engrafted and my immune system was strong enough to be allowed home.

I’ve just celebrated my first transplant birthday but I still go to hospital for weekly venesections to reduce my iron levels. I’ve been lucky that I haven’t been too badly affected by GVHD (graft versus host disease). I have recently had some of my childhood vaccinations again, and I still take precautions and avoid crowded areas. My confidence is slowly returning and I’m now back at work full time.

It’s only been a year since I left hospital so it’s all still quite fresh and my emotions are very changeable. The worry that the disease might come back is slowly easing as I get further out from the transplant. I’m not sure I feel differently, but it has definitely brought my family closer now, especially as my sister was my donor and I’m getting married to my girlfriend this summer.

I recently saw a cancer charity advert with a man in the Arctic saying you shouldn’t have to deal with cancer on your own. I found it, and still do, difficult to speak to close family as they are also scared and want to hear you be positive, so it’s easy to just bottle it up. Your hospital and charities like Leukaemia CARE can offer help or direct you to organisations that enable you to talk through your fears and anxieties. Also, I had comfort in knowing my doctors, nurses and transplant coordinators are experts and do this stuff every day. Listen to what they say and try to avoid Google.

I’m incredibly grateful to all my family and friends that have supported me through the treatment and my recovery and I’m looking forward to getting married this summer. I know that I owe the dedication and professionalism of the doctors and nurses at the hospital more than I can ever repay as without them things would have been very different.