Diagnosed with follicular lymphoma, Andy shares his experience, including the difficulties he faced

Andy sitting outside

‘I’m a 54-year-old married man with 2 grown up children and a Jack Russell dog. I am a Chartered Surveyor and Project Manager for a commercial property developer and in my spare time enjoy photography, travelling and dog-walking – preferably all at the same time.

It was the 2009 May Bank Holiday and, as I was getting out of bed, I noticed a dull ache in my groin and felt a lump. I hadn’t noticed anything wrong and didn’t think I’d done anything strenuous to cause a hernia, which I assumed it was.

I was able to see my GP a couple of days later, He told me he was fairly sure it wasn’t a hernia but I needed to get it checked, and soon. I was referred to a groin specialist and thought this was just the man for the job. He couldn’t find a hernia either, no matter how much I coughed and looked left, but he was concerned about the lump. An abdominal CT scan followed and I was told I would need to wait a fortnight before the results could be analyzed and returned. I soon learned that life with lymphoma is made up of lots of fortnights.

I had an appointment with the specialist to receive the results. He told me my liver, spleen, kidneys and other useful bits below the diaphragm were all in tip-top condition. But the lymph nodes weren’t. Not just the one we could feel and see in the groin, but deep within the abdomen too.

How long this had been growing in me was impossible to know. He reckoned that for it to have got to the state that I was presenting with, it might have been a couple of years. I needed a biopsy straight away.

A fortnight later, a surgeon told me I had cancer and, after some input from my GP, I was referred to a haematologist. He looked through the results of the biopsy, blood results and the CT scan and we talked through my medical history. He had a good poke around in the various parts of the body that would soon be poked and prodded a lot more.

He told me I had follicular B-cell non-Hodgkin lymphoma, probably stage 3. A month before I didn’t even know there was something wrong with me, and now I am diagnosed with a stage 3 cancer. How does that work? What I realised with lymphoma is that it’s not something you can do much about to prevent getting.

I found it difficult to come to terms with the treatment plan they had for me. I was told that they weren’t going to do anything about the cancer straight away, but that they would adopt a watch and wait or ‘active monitoring’ strategy. It felt more like ‘wait and worry’.

I was 47 at the time and although I felt stoical, one of my initial thoughts was: ‘Oh no, people will expect me to run a marathon now!’  

Although I had been advised to be cautious about information on the internet, I’d put ‘lymphoma’ into my search engine and all sorts of really good advice came up. Some not so good advice too, so it is important to be careful.

However, I soon found Lymphoma Action, a small but incredibly helpful charity that had exactly what I was looking for. Within a couple of days leaflets had arrived and I was beginning to understand more about ‘watch and wait’.

In the meantime, I had a PET scan and a bone marrow biopsy. I would not recommend having a bone marrow biopsy on the way to work. Having this procedure while in a suit is something I won’t forget!

Then I had to tell my children, both of whom were in their early 20s. My son lived locally, so he was told in our kitchen one Sunday. I told him all about it and he took it in his stride. My daughter was studying in Edinburgh at the time and we arranged a special visit to see her. ‘But you never come up mid-term. What’s wrong?’ Fortunately, the Lymphoma Association’s information came to the rescue again, and explained it all, which she found reassuring. 

In the autumn of 2009, it was recommended that some radiotherapy on the original lymph node point in the groin might be beneficial. My right leg was suffering from some lymphedema and the radiotherapy might assist in tackling that problem. So, after returning from a holiday, I had 12 sessions of radiotherapy. Despite it not being hot in the hospital when I saw the radiology consultant, I was sweating quite a lot. He asked if this was normal for me to be suffering sweats during the day. It wasn’t. By the New Year, they were during the night-time as well. 

As a result of the symptoms, in February 2010 I started 8 sessions of R-CVP (rituximab which is a monoclonal antibody, cyclophysphamide, and vincristine which are chemotherapy drugs and prednisolone). The staff at my local general hospital in Chester were absolutely fantastic and I got to the point where I was actually looking forward to having another round of treatment! It was good to be doing something positive.

The last of the chemotherapy and the summer came and went and my consultant said that I would benefit from 2 years of bi-monthly maintenance rituximab which should extend my remission by 3 years or more. But there was a problem.  It wasn’t NICE approved and the Cancer Drugs Funding was difficult to obtain.

We looked at re-mortgaging our house and my father, who had just retired, offered his lump sum from his pension to pay for it. My employer even offered to help, which was an amazing gesture. But, I am a lucky man and the BUPA cover I have through my work paid for the maintenance.

Not everyone was so lucky and having shared my experiences with Lymphoma Action, they asked me to contribute to a NICE Committee that was considering rituximab maintenance funding. I jumped at the chance. Fortunately the Committee recommended maintenance treatment through normal NHS funding and now anyone who needs it should be able to receive it without worry.

By mid-2012, the maintenance was over. I am still in remission 3 years later with no sign of lymphoma activity on my CT scans.

I am very fortunate to have family, friends and colleagues who have supported me throughout this, and I wanted to be able to support others, so decided to volunteer to become a Lymphoma Action ‘buddy’.  I have spoken with 3 people so far and realise that all of our experiences of lymphoma are different. Lymphoma is a complicated cancer and for many people, lymphoma is chronic and won’t be cured. It can usually be managed, but will often come back and this is something I have found very hard to come to terms with.

When you are undergoing treatment, the care is fantastic. I have found it harder since treatment has finished. I have regular consultations and check-ups and am currently on 6-monthly visits. Given the current state of my health, these are now just routine prods and pokes and a chat with the consultant. I am very stoical and am determined to make the best of every day, but there are days when it’s all too easy to over-think things. When, with the best will in the world, the dark clouds come over the horizon.

I have family and friends to chat things through with, but there are times when I feel low but don’t want to raise the issue with them again or worry them. While I was having maintenance rituximab, my consultant was mentoring a PhD student who was doing some research into the psychological effect of lymphoma. I was asked to spend an afternoon with her, responding to her questions openly and honestly. I told her things that I have never told anyone else, for fear of burdening them unfairly. She would not be sharing any burden. I found this session enormously worthwhile and one that I would recommend.

One of the most useful things I did when I was first diagnosed was to get myself to my local support group.  I arrived with the thought that I might have 8–10 years to live. The first person I met had been diagnosed 15 years previously which was instantly reassuring. Everyone was so friendly and supportive; I can thoroughly recommend joining a group if you haven’t already.  Just being in a group where everyone has had similar experiences means that you can openly discuss any problems you might have.

I can thoroughly recommend joining a support group. Just being in a group where everyone has had similar experiences means that you can openly discuss any problems you might have

With the ‘buddy scheme’ giving access to others who have been through what you have and the helpline is there to guide and support you, Lymphoma Action can offer lots of help through treatment and beyond.

So 6 years on after a diagnosis of follicular lymphoma, I reflect on an experience that I would never have chosen to have, but I’m glad I did have. It has made me look at my life in a different way. I have done things that I wouldn’t have done if I hadn’t been diagnosed. I have brought forward things that might have been put off until retirement and have met some really good people along the way.

I also think that I have become a better person, and that must be a good thing.’

30 June 2015