“I had been living with a blood condition called polycythemia vera (PV) for 13 years. It was managed with drugs and didn’t impact my life. I had been told there was a ten per cent chance of it developing into leukaemia but didn’t regard that as a likely possibility. I was taken ill one night with agonising stomach pains which came on suddenly. As we were staying with family, we drove home early the next morning and I went to A&E. They ran various tests but didn’t find anything other than the fact my spleen was enlarged. They told me my blood tests were abnormal, but I was used to that as they had been for years due to my condition. However, I was still told to see my haematologist. They gave me no indication I might have leukaemia and I think they did not suspect it.
When I saw my haematologist, he said he couldn’t work out what was going on as the results of the blood tests were not something he had encountered before. He told me he was going to refer me to a professor of myeloproliferative neoplasms (MPNs) at a major London hospital. However, there was still no mention of leukaemia. I don’t know if he didn’t suspect it or just didn’t want to tell me before it was properly diagnosed.
It took a few weeks for an appointment to come through, during which time I was feeling increasingly weak and ill. It was a feeling of being generally unwell and lacking energy rather than any specific symptoms. After various tests, the professor told me I had a particularly aggressive form of acute myeloid leukaemia (AML).
At this time, I knew nothing about leukaemia other than a vague impression it was incurable and led to a painful death. I was in a state of shock during those first few weeks and had trouble taking in everything the professor was telling me. Fortunately, my wife was with me for those consultations and as she is a nurse, she was able to make sense of it all.
The professor didn’t pull any punches when talking about my options, although she was very kind and supportive. I was told that drugs and chemotherapy could give me up to eight months of quality life. The only option for a longer lifespan or even a potential cure would be a stem cell transplant, but I was too unwell to withstand one. The only hope offered to me was the suggestion that the professor and her team would try to improve my health to the point I could withstand the transplant. However, even then I would only have a five per cent chance of surviving, as my AML was a particularly aggressive form.
I wanted more than eight months, so I opted for the possible transplant route. I then started a regime of chemotherapy, transfusions and drugs that aimed to improve my health. I was also put on a trial involving a new drug. My memory of this period is rather clouded; it all seems like a dream or something that happened to someone else. Perhaps it was the shock, or a sensory overload of thoughts, feeling and information to process. But, what I do remember is that it was a process of progress and setbacks, with much of my time spent at the hospital. I was fortunate that, despite all odds, the professor’s wonderful team managed to get me to the point where they deemed me fit enough for a transplant – even though my chances of surviving it were slim.
A nurse told me something I will never forget, which helped me put everything into perspective. She told me to forget about percentages. The transplant would either work or it wouldn’t. After all, if there was a 99 per cent chance of it working, I could still be in the one per cent where it didn’t.
Then, the search for a stem cell donor began. Fortunately, my one sibling – a brother six years younger than me – was a perfect match and he was more than happy to do so. I told him I now realised it had been worth putting up with all those years of broken toys and torn books.
It was just as well I didn’t have a choice of treatment as the route to the transplant was so gruelling I might have ducked out if there was another option. It consisted of spells in hospital undergoing increasingly virulent forms of chemotherapy designed to destroy my immune system. I was then sent home to recover before the next, stronger course of chemotherapy.
The first one wasn’t too bad. I felt relatively well and was able to enjoy much of the special menu available to pre-transplant patients to tempt them to eat. However, all good things come to an end – including my appetite. My disappearing immune system laid me open to the risk of infection and I was put in isolation rooms for my stays in the hospital. I had visits from friends to help the time pass – and of course, my wife and daughters visited every day. This was a very difficult period for them.
The last couple of chemotherapy courses were brutal and made me very ill. In fact, when the last one was set up and the nurse turned on the drip into the Hickman line, I began to feel ill immediately and was just able to hit the emergency button. The next two days were completely blank as I have no memory of them; just as well from what the nurses told me afterwards.
My brother was called in for a session to collect his stem cells, but they were unable to collect enough the first day and he had to come back for a second session. The process seemed to drag on and I was worried the transplant might not happen, but the transplant nurse then turned up in the evening with a bag of cloudy liquid and told me it about to go ahead. The transplant itself (as I had been warned) was anticlimactic – very similar to the many saline drips and blood transfusions I had been given. After a couple more weeks in hospital I was discharged.
However, on my first evening home I was taken ill and my wife rushed me to A&E, where I was diagnosed with a severe infection. I was virtually unaware of my surroundings for almost a week and apparently nearly died at one stage. They never got to the bottom of the cause but suspected the infection was in my Hickman line which they removed.
Throughout my diagnosis and treatment, we found that dark humour helped. I was feeling the cold terribly and wanted a new pair of sheepskin slippers, but my wife joked that I wouldn’t get the wear out of them. Well, I did. In fact, I’ve worn out three more pairs since then and that line has become a family catchphrase.
My transplant was at the end of September. When I went back to the hospital for a follow up appointment I was told the transplant was not working. Christmas was approaching and I thought it would be my last one.
After Christmas, I was handed over to a new consultant. He told me further down the line that he’d been told there was very little hope for me but was asked to do what he could. He said he was going to try a long shot and give me a cocktail of drugs along with monthly cycles of azacytidine chemotherapy, although it was unknown territory and he didn’t know if it would work.
To my surprise (and also to my consultant’s, as he told me later) the treatment worked and I found myself in 100 per cent remission a few months down the line. As my AML had been so aggressive, my consultant was reluctant to stop the treatment, so he carried on the cycles of chemotherapy for another three years until lockdown in 2020 brought them to an end.
Since then I have had various issues resulting from AML and the transplant, so I still have regular appointments at the hospital. These are mainly related to graft-versus-host-disease (GvHD). I consider this a small price to pay for the fact I have recently celebrated the sixth anniversary of my transplant and I’m in full remission.
I wish I had been told about Leukaemia Care and the support it offers, particularly the Buddy Scheme. I would have found it invaluable to talk to someone who had already experienced what I was about to go through. That is why I have signed up to be a buddy myself – to offer something to others which would have been a great help to me if I had known about it.
I think Spot Leukaemia is very important because the earlier leukaemia is diagnosed, the greater the chance there is of treatment working.”
Do you know what the six most common signs and symptoms of leukaemia are? They are:
- Shortness of breath
- Fever or night sweats
- Bruising or bleeding
- Bone/joint pain
- Repeated infections
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk