Chris Williams: My leukaemia story

My diagnosis

“Before I was diagnosed with acute lymphoblastic leukaemia (ALL), I didn’t know any of the classic symptoms of leukaemia. It never even crossed my mind that it could be cancer.

I was 24, and it was the end of April when I realised something wasn’t quite right. I had an infection that I just couldn’t shake and began to feel tired. But not any sort of tired, a fatigue that was constant and like I couldn’t get my energy levels back, no matter how long I slept. At the time, it was just something I put down to feeling stressed.

That was until all of my sinuses came up. I went to the dentist who said he had never seen anything like it before, and I was tried on a round of antibiotics, which didn’t work.

I woke up the next morning and noticed a blood rash appear over my legs and feet and felt that my spleen was swollen. Every time I took a step or took a breath, I could feel it at the side of my stomach pressing. I went to the hospital, told them how I had been feeling and had been sick whilst there. I had blood tests, and within half an hour they told me I had ALL.

I was shocked; I couldn’t wrap my head around it. Cancer? I denied my diagnosis for a week afterwards before the looming prospect of treatment began to appear. I was convinced that I either had COVID-19 or a chest infection and that there could be no possible way I had leukaemia. It wasn’t until I told my family and saw their reactions that it all began to feel real. I had cancer.”

Treatment

“I was isolated in hospital for three months; I had chemotherapy but didn’t go into remission. We made a switch to immunotherapy which didn’t work, so talks of a stem cell transplant began, as well as mentions of CAR-T therapy.

CAR-T wasn’t something I had heard of; there was just such a build-up about it. A decision was made that a stem cell transplant would be a better route.

But, after my stem cell transplant in November 2021, I relapsed. My options were seemingly becoming less and less likely, until the conversation of CAR-T arose once again. So, we went for it.

I wasn’t looking forward to being in hospital for a long period of time, but it was my last option. I was scared. There was a possibility that I would be back in intensive care again; I didn’t want to be away from my family.

I was sent from Belfast to Manchester as CAR-T therapy is not yet available in Northern Ireland. They explained to me the process of taking my T-cells, modifying them and putting them back in to kill the cancer cells.”

Whilst I worried about the impact of the treatment on both me and my loved ones, I was also concerned about the financial impact. This treatment is not covered by the NHS, and I would have to pay for my flights back and forth from Manchester as and when (as well as accommodation); luckily Leukaemia Care were able to help me cover some of these additional costs.”

My life now

Since having CAR-T therapy, I have had limited side effects, and all is seemingly going well. I am thankful for the dedicated team and support I had around me. Once I was able to get over some of the other worries, treatment itself was OK; if someone asked me whether I wanted to have a stem cell transplant or CAR-T therapy, I would pick CAR-T each and every time.

I found out about Leukaemia Care from my clinical nurse specialist who informed me the charity could provide a grant for patients in the CAR-T clinical trial. From my knowledge, Leukaemia Care is the only charity that provides this type of grant, and it has helped ease a great deal of burden.

Being able to receive financial support to help with my travel costs took a massive weight from my shoulders. A cancer diagnosis can mean taking time away from work, as well as the additional costs that can come with CAR-T therapy. It has been one less thing to worry about since I was told my cancer had relapsed.

I have had a very positive experience with this charity, and they have helped ease the extra stress that can be associated with a cancer diagnosis.”