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“Our journey started when Derek wasn’t feeling awfully well. He was just coming up to the age of 65. He had infections that weren’t going away, and he was quite tired and breathless. It was about three or four months of experiencing these symptoms before I told him, “We have to go to the doctor.” It was something we had been putting down to getting older.
The doctor took a look at him and said, “I don’t really like the colour of you, I want to do some blood tests,” which we did the next morning. We went down to the south coast to see my mother and had missed lots of calls from the surgery, so spoke to them on the Thursday morning. They told us we would have to go straight to the hospital as there is a bed waiting, and his haemoglobin is low, which is not good.
We got to the hospital and we (as everyone has to) had to go through the A&E even though there was a bed waiting for him as that’s the way it works. We spent a lot of time in A&E with people from the lab coming back and saying that they had made a mistake, so they were going to do more blood. However, they eventually took him to where the bed was waiting. We saw the consultant haematologist and the scary matron, and they started an immediate blood transfusion. I think he had three or four blood transfusions that day.
I was in absolute disbelief. We had picked up the missed calls at seven in the morning, spoke to the surgery then drove, it was like this scary matrix. The doctor asked where we had driven from, so we replied, “Well, Worthing.” The doctor looked at Derek and said, “Well you haven’t driven, have you?” He said, “Of course I have, I’m the only one insured for the hire car,” which didn’t go down too well! However, when we spoke to the GP in the morning, she said we had to go to our local hospital, and I said, “If it’s serious, should we not just go to the hospital in Worthing?” At no point did she say that this was desperately serious, don’t let him drive. She’s looked after us for years and years; she’s not emotional or panicky, so this was completely out of the blue.
In one of the missed calls, she left a message saying he was low in iron, and I said, “You probably just need some iron tablets.” That’s what I was expecting in the morning when we went to the doctor, I thought she was going to say that she had sent a prescription and would we go and pick it up.
Thar week he stayed in the hospital for three days having blood transfusions and he was then discharged to come back two days later for a bone marrow biopsy. That night he had some bloods done again, but the results showed he had to have another blood transfusion before he could go. It was then about two weeks of waiting, which was very scary.
The initial diagnosis came back as myelodysplastic syndromes (MDS). Derek had several episodes of blacking out which nobody medically qualified would say it was anything to do with MDS. He blacked out at Malvern Grounds, and one of the paramedics who looked after him was an expert on MDS. He told us that people can live with this, with the correct management – it can be controlled, and the prognosis isn’t always bad. We had never heard of MDS prior, but he had been told that there is a chance it could morph into leukaemia. It’s a small chance, but it was in the back of my mind.
I tried to learn as much about MDS as I could, but Derek was more focused on going to his treatments and trying to carry on as normally as one can. But it turned our world upside down, it’s a new way of life.
So, we’re now into May and if you have MDS, you’re given a chemotherapy alert card that says if you have an infection, you show this at A&E and you have to be seen and treated in 60 minutes and you have to be treated. Derek had a few nasty infections, and by then we had moved to Swindon, but he was still being treated at the original haematology department. He then had a really nasty infection and was admitted as they believed he had bowel cancer. It was a lot to cope with in a matter of months. They kept him in and did various scans and operated – thank the Lord it wasn’t bowel cancer and he recovered from his operation well.
Derek recovered, and we later had a meeting with the consultant who told us that we were going to look at a treatment plan. He told us about a lot of options, but what they were going to do was perform a bone marrow biopsy and therefore to come back in three weeks to discuss the options for the treatment of MDS. So, we went back three weeks later, he sat us down and told us he didn’t have options for MDS because it had developed into acute myeloid leukaemia (AML).
Derek said to the consultant, “Well, that is it then because I’m 65. There won’t be any treatment now, will there? That’s what I’ve been told, that if it developed in leukaemia, there would not be an option for a transplant because of my age.” The doctor replied, “No that’s ridiculous; you’re fit, you’re healthy and as long as you pass the tests, we’re going to do a stem cell transplant.”
It was all systems go at Great Western Hospital; it was a whirlwind of tests and meeting consultants and finding a suitable donor. It was six weeks of testing before when we received the phone call telling us a bed was waiting. Derek just wanted to live. It didn’t matter what it took, he just wanted to live. He didn’t want any of the details, he just wanted to get on with it.
We were halfway through the second cycle of chemotherapy when we were told they found a match; we had a donor. We had to go to London for the transplant, but it only happened on the third attempt. He had a bad reaction to the first infusion before the transplant, so he was sent home. The second time he had a cough (this was pre-COVID-19) but was told no because he wasn’t 100%. But third time lucky and it went ahead.
The transplant went well, and Derek was discharged from hospital. Things were challenging because he had almost every complication you can get, such as graft versus host disease (GvHD) and other viruses, but the team at Great Western Hospital got him through it.
Looking back, if I had known what I know now, I would have made Derek go to the doctor earlier. The fact he could be seriously ill never crossed my mind, which is why it is vital for an earlier diagnosis and to be aware of the signs and symptoms.
If I could give one piece of advice to someone else diagnosed with leukaemia, or if their partner was diagnosed with leukaemia, it would be to learn as much as you can about the particular kind of leukaemia because there are so many different kinds. I wish I had joined a support group because things happened so fast.”
Derek’s symptoms of leukaemia were:
• Repeated infections
• Breathlessness
Are you currently dealing with similar symptoms to Derek’s? 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
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