John

Initially I thought no one would want to read my story as it isn’t very dramatic. But then I thought ‘well maybe that’s just want people want to read’.

I was diagnosed with lymphoma back in 2014, at the age of 58, and from diagnosis to needing to start treatment was six years.

I had noticed some swollen glands in my neck, so went to see my GP. But I didn’t feel that my concerns were taken seriously. At the time my wife was ill and shortly after we changed doctors, so I decided to go to the new practice with the (still) swollen glands. I actually saw a new GP who was being trained, who organised to have some blood tests done.

Shortly afterwards I got a call back from the GP and after a second opinion from a colleague I was referred to hospital where a scan and some other tests were carried out. Looking back, I did have more symptoms than just the swollen lymph glands. I had a rash all over my body at one point and there was a spell where I felt so tired I almost felt disorientated. I put these things down to the job I had at the time which included a lot of travel. Looking back – and knowing what I know now – they were tell-tale signs. I was told I had cancer but no specific diagnosis.

A few weeks later I was referred to haematology where I was told I had mantle cell lymphoma, a type of low-grade non-Hodgkin lymphoma.

With my wife ill, my first worry was whether I would still be able to support her. But was surprised to be told that, although I had lymphoma, they were going to adopt an active monitoring (or watch and wait) approach. 

My medical team explained that as the lymphoma wasn’t causing me problems, they would monitor me regularly until such time as I would need treatment. That turned out to be six years. 

It took a while to adjust to life with my lymphoma. At first it felt like I had a dark shadow hanging over me, I was waiting to become ill, but most of the time I just cracked on with life. I knew at some point I would need treatment, but tried to settle into things as before.  

But those six years were a time of change for me. I work in health and safety, but decided to take early retirement as my wife was ill and as a result of my own diagnosis. But once my wife was better, I decided to take on some part time consultancy work. I also continued to try to keep as fit as possible by swimming a couple of times a week.

In 2020, I began to get chest pains which was quite alarming. I saw my GP who referred me straight to A&E where they carried out more tests. Then I received a call from haematology saying: ‘It’s time we treated you’. I was now 64. 

I was to have six sessions of the NORDIC protocol, which is rituximab, cyclophosphamide, doxorubicin, vincristine, cytarabine and prednisolone; four sessions as an in-patient and two as a day patient. The chemotherapy was fine for me, and there was a great camaraderie on the ward amongst a group of us. I took in my tablet to watch Sky football and the rugby league and instantly clicked with the others in the room. We ended up sitting together to watch the sport and there was a real sense were we in this together. 

After the chemotherapy finished, an autologous stem cell transplant, using my own stem cells, was recommended. I thought that having kept fit, and having found the chemotherapy manageable, that the stem cell transplant would be OK. But I found it much tougher.

I tried to take the same approach as I had with the chemotherapy, but there were days I was so exhausted that all I wanted to do was lie on the bed. I tried to make sure I had a shower and dressed every day as that made me feel better, but it was really tough.

The stem cell transplant wasn’t done locally and I was in hospital for 3 weeks and a day. When I got home, I tried to do too much too quickly. Mowing the lawn was exhausting and on one occasion I tried to help a family member paint their gutters and really set myself back.

By now COVID was part of life and in some ways it was a bit of a help. It made me stay at home because I knew I had a weakened immunity and I needed to be cautious. As a result I didn’t go out of the house at all and had the opportunity to fully rest.

I am a safety officer at a rugby league club and was involved in setting up procedures to minimise the risk of COVID. My insight proved useful, although there were many challenges on match days. 

The last time I had a check up with my doctor, he said he didn’t need to see me for a year. Up until now, three months has been about the usual time between appointments. This should have been joyous, but there was also an element of ‘hang on, I still have lymphoma’. It does feel a bit like my safety net is going. But then again, after six years, it was a change in how I felt that prompted the need to start treatment, so I guess my body will tell me if I need any help in the future.