Rue

In 2022, I was 49 and running my family business. I’d been feeling nauseous for about a week, so went to see my GP. He spotted I’d had problems back in 2019, which had been suspected as being silent acid reflux, so another dose of Omeprazole was prescribed to see if that would resolve the problem. 

Unfortunately, this didn’t help, so an endoscopy was arranged. The endoscopy was clear, however some raised glands in my neck were flagged, so an ultrasound was carried out a week later. This was followed by a needle biopsy in January 23, but I was told they had taken insufficient sample size to make a diagnosis. So in February 2023 a whole gland was removed. The biopsy tests came back clear, so I felt I had nothing to worry about. 

About a month later, I got shingles. To me, this seemed to suggest something was wrong with my immunity, but there was nothing specific to pinpoint my worries on. About a month later my leg ballooned around my knee and a lump developed under my chin. 

I went back to my doctor who gave me antibiotics, but as these had no impact, another ultrasound scan was arranged, followed by a core biopsy. Three weeks later I was told they had found cancerous cells, and in May 2023 I was diagnosed with anaplastic large T-cell lymphoma, negative version, which is a rare form of non-Hodgkin lymphoma.

I felt strangely relieved that they had found something that was causing these issues and looking back I feel I really had to push to have my concerns investigated. But I also didn’t know where this was going to end up and I was really worried about my family. It was quite overwhelming, and I had no preconception of how I would be and how I would feel. 

I had a PET scan which showed the lump in my neck had grown to the size of a tennis ball. The oncologist said the lymphoma was aggressive and that I needed to start treatment quickly. He reassured me that I should be able to able to get into remission. 
I was to be treated with six cycles of a chemotherapy regimen called BV-CHP (brentuximab vedotin, cyclophosphamide, doxorubicin and prednisolone). Brentuximab vedotin is a type of targeted therapy drug, which delivers chemotherapy directly to the cancer cells using a monoclonal antibody. 

The first course of treatment did not seem too bad at all. In fact, the prednisolone I had for five days perked me up and made me feel great. I thought ‘I can manage this’. But once the steroids finished and came out of my system, I had a massive drop. I felt I had to keep upbeat, as my family were struggling and I didn’t want them to get upset that they couldn’t do more for me. 

Keeping myself occupied and keeping my mind from thinking about what I was going through really helped as I settled into a treatment routine. The first week was OK, the second week I’d feel down and the third week I’d pick myself ready for the next treatment. I dreaded going back for more treatment, but just had to focus on getting through the cycles. 

I developed peripheral neuropathy in my hands, which caused me a strange tingling feeling. My team wanted to stop this from becoming worse, so one of the drugs was reduced slightly to avoid it becoming more severe.

At the end of the six cycles I had a PET scan which showed I was in remission. The next conversations were about having a stem cell transplant in order to keep me in remission for longer. My initial thought was not to have this straightaway. But thinking more about it and talking things through with my oncologist I started to have a different view. 

I thought by having the stem cell transplant now it would give me the best chance to stay in remission and it wouldn’t be looming over me. I worried that it may not be as effective if I had it later down the line and couldn’t be certain what my health would be like in, say, 5 years time. 

I decided to go ahead with an autologous stem cell transplant using my own stem cells. I had one day of chemotherapy early in January 2024, which didn’t feel very different to before. 10 days later, I went in to have my stem cells extracted. They hooked me up to a machine, where they took blood from one arm; this then went into a machine that separate stem cells and then the blood was returned back to my body. It took about 4 hours of staying still and was quite a long, tough day. They managed to collect enough, so I only needed to go back three weeks later, when a central line was fitted and I then had six days back-to-back high-dose chemotherapy to kill any cancer and my bone marrow. They then reintroduced my stem cells on day seven.

The stem cell transplant was carried out on the Tuesday and, as  I only live 10 minutes from the hospital, I was able to go home. But I had to go back to the hospital every day for them to take bloods. By Friday that week my neutrophils hit zero, so I had to spend 10 days in hospital to avoid infections. I was aware of all the side effects like ulcers in the mouth, diarrhoea and vomiting, but was lucky to avoid all these. Post transplant, my legs, thighs and calves are sore and I developed neuropathy in my feet and dry eyes and mouth.

I am now four months post-transplant and have gone back to work, doing just half days. I feel I tolerated the treatment pretty well, but haven’t really got anyone to compare myself against as my lymphoma is so rare. 

The most important thing is that I am here, and I can look forward to so many things with my family, spending more time with them and being more conscious about it.

When you hear the word ‘cancer’ the first thing you think about is death, but I now realise that is not always the case. I hope that my story will help someone else through and empower people to persist if they think something is wrong. I feel that pushing myself saved my life.