Gareth

At the beginning of 2023, I was working in aero defence security after spending 27 years in the Army. I had put on weight after leaving the forces, so I decided that I would get fit and started cycling. In the March of that year, I joined a cycle race team who were training in Majorca, and noticed while I was there that I wasn’t performing as well as I should have been considering the amount of training I had undertaken. I had no other symptoms, but I just felt that I wasn’t as fit as I should have been. 

By the May, I was experiencing sleepless nights and bad heartburn, which I thought was acid reflux. That went on for nearly a week, and it got to the point where I couldn’t sleep at all. My nine year old told me to go to the doctor, so I visited a local primary care clinic. The nurse on duty put me on an ECG as she could see a predominant heart beat in my chest when I was lying down. She was concerned that it could be an abdominal aortic aneurysm. It didn’t make sense, as I was very fit with a low heart rate and this condition is one that is seen more often in older, unfit people. But due to the seriousness of the suspected condition, an ambulance was called, and I was sent to the hospital. 

Shortly after arriving at A&E, I was given an ultrasound scan followed by a CT scan. A short time after, the doctor spoke to me about the scan results and said they saw a mass that they suspected was lymphoma. I had no idea what lymphoma was and didn’t know at that point that it was a blood cancer. 

I was told that I needed a biopsy to confirm a diagnosis and was admitted to hospital for five days before being sent home to wait for the results. I felt pretty unwell at home and started to experience a number of symptoms. I lost a lot of weight, and developed jaundice so I went back to the GP who sent me to the hospital where I ended up staying for a month. The lymphoma mass was 22cm by 18cm and was blocking my liver, so at this point it had become quite serious.

During that time, my diagnosis was confirmed as follicular lymphoma.  I was told that it was stage four, which really concerned me as I thought this meant it was terminal. But the doctor explained that this wasn’t the case, and that even advanced lymphoma can respond well to treatment. I went on to receive six cycles of O-BEND chemotherapy, and I tried to keep fit between each chemotherapy round. After my fourth round, I cycled from Twickenham to Paris for a children’s cancer charity.  

I had also received a CT scan to see how the lymphoma was responding to treatment and the scan results were looking good. However, a further scan at the end of my treatment showed only a minor further shrinkage in the tumour, and it looked as though the follicular lymphoma was in fact masking a second type of lymphoma - Diffuse large B-cell lymphoma (DLBCL). I received that news just before Christmas in December 2023, and I started to prepare myself for undertaking another chemotherapy regimen called R-CHOP. I still tried to keep fit and cycled most days apart from the first week of each chemotherapy round. I did find the R-CHOP more difficult than the O-BEND chemotherapy, and the escalation in feeling fatigued between rounds four and six was very steep for me, but I tried to keep upbeat. 

After the sixth round of chemotherapy, I had another scan which revealed minimal shrinkage in the tumour so my medical team decided to go plan for an autologous stem cell transplant subject to the outcome of a biopsy. In the end, it was decided that a biopsy wasn’t possible due to the difficult location of the tumour, but due to the behaviour of the cancer the team decided I would undergo further chemotherapy to prepare for the stem cell transplant.  

I went on to receive five days of intensive R-ESHAP chemotherapy, but unfortunately was then hospitalised for eight days due to neutropenic sepsis. Thankfully, I recovered quickly and went on to complete a successful stem cell harvest. But a subsequent PET/CT scan showed that I wasn’t eligible for the stem cell transplant after all, as the tumour was still too big.  

As I write this in August 2024, I am on a two-month rest from treatment and will receive another PET/CT scan in a few weeks. Based on the result of the scan, I will either go onto active monitoring, or will be eligible for CAR-T cell therapy if the tumour has shown no reduction in size or has increased further. I am determined to use this time to keep active – my fitness levels are now back up to what they were pre-diagnosis. I also went on a camping trip recently which was a nice way of taking a break from it all.

One of the biggest pressures that I have found in this experience so far is balancing treatment with work. In some ways, I have ignored some of the warnings around self care by continuing to work, but it’s difficult as I have a young family and a mortgage. It can also be tricky when dealing with relationships where people don’t know what to say, say nothing at all or ask too many questions. Managing those interactions can be difficult at times, as people don’t realise that you have had that same conversation over and over again, but I know they aren’t living my cancer – I am – and to some extent I have had to adapt to that, as I feel it can make you quite self focussed. 

I am a firm believer that ‘it’s OK not to be OK’, and that people living with a cancer diagnosis shouldn’t feel the pressure of having to be positive all the time. I am also really keen on making sure that people, especially men, know that it is alright to talk about it. One of the main things that I say a lot when contributing to the Lymphoma Action Closed Facebook Support Group is that I feel that cancer is a ladies sport. What I mean is, that I see a huge amount of comments and questions on the group from female partners, friends and families on behalf of men living with lymphoma, but I would say to those guys get yourselves on there! I know it’s not considered the ‘macho’ thing to do to reach out for help and support, or even to discuss cancer, but to that I say I was a Sergeant Major for years, am covered in tattoos and was a professional boxer – if I can do it, you can do it too. 

Gareth has shared his story with us as part of our Let's talk lymphoma awareness campaign, running throughout Blood Cancer Awareness Month in September. Find out more about how you can get involved in our campaign to raise awareness and funds to support our work.