Alister

For the past twenty years, I have been the Managing Director of two care home businesses, and when the COVID-19 pandemic hit in 2020 it was an incredibly stressful time. Guiding the businesses through very emotional and financially challenging situations was tough, so when I started experiencing night sweats, insomnia and eczema I put them all down to stress. But the truth of the matter is that I don’t really know whether what I was experiencing were symptoms of lymphoma. I only discovered that I had the condition by chance following a routine prostate check in October 2022.

I had booked myself in for an MOT due to a few ‘old man’ issues like needing to pee more frequently and because I was mindful that my brother had received a diagnosis of prostate cancer. I had a scan which revealed an enlarged prostate, but my consultant also asked if I was experiencing any stomach or bowel issues, as I also had swollen lymph nodes in my upper bowel. I was sent for some biopsies on both the prostate and swollen lymph nodes and was told upon getting the results that whilst my enlarged prostate needed medication, it wasn’t cancerous. But the biopsy on my lymph nodes revealed that I had suspected lymphoma. A further scan confirmed a diagnosis of follicular lymphoma, a type of low-grade non-Hodgkin lymphoma in March 2023.  

It came as quite a shock. I didn’t have any symptoms that I would associate with anything bad, so I didn’t feel like anything was wrong. I wasn’t lethargic and had no visible lumps on the outside. I knew nothing about lymphoma and was surprised to hear that it is a type of blood cancer. My consultant gave me two options – to go onto active monitoring until such a time that symptoms were starting to cause me some issues, or to start treatment with chemotherapy and immunotherapy.

I wanted to start treatment, so in April 2023 I began eight rounds of R-CVP chemotherapy every three weeks. The chemo wasn’t as bad as I thought it would be. My hair thinned, and I felt a bit nauseous and didn’t want to eat so I lost some weight. I did have bad neuropathy in my hands and my foot, which got slightly better when my medical team dropped one of the drugs from the chemo regimen. The steroids prescribed to help with side effects meant that I couldn’t sleep, so I was given sleeping tablets. Sometimes I felt OK after a round of chemo, sometimes I didn’t, but coming off of the steroids around day 6 or 7 of the cycle was certainly hard. I would feel flu like symptoms, with bad headaches and just generally feeling rubbish. My energy levels went down a lot, and I didn’t have the energy to play golf or concentrate for long periods of time. It all felt like COVID part two, where I would avoid crowds and family gatherings to avoid picking up an infection.

I was treated at a specialist cancer hospital, and when walking through on my way to treatment, there were times I felt like there were people in a far worse state than me. Compared to what other people were going through, my physical side effects were OK. But the mental side effects were hard – particularly when coming off the steroids. I would have mood swings where I became short tempered, and I dealt with a lot of it on my own as I didn’t want to put my family through it. I would hide in the spare room on bad nights, and people are surprised to hear now that there were times where I felt like giving up and like I couldn’t cope. I just wasn’t open about how I felt at the time, but I did have some counselling and reconciled myself to acknowledging the dark feelings and accepting the emotional rollercoaster that is a cancer diagnosis. 

I was constantly worried about strange pains and what they meant. In fact, I had a scan early after receiving six of the eight rounds of chemo because I started to get pains and was concerned the lymphoma was growing elsewhere. The scan showed the lymphoma was in remission, so I was then moved onto immunotherapy. A further scan showed an area in the colon that required a colonoscopy, but thankfully that was clear.

I remember one night I gave in and searched for information about lymphoma online. Up until then, I had buried my head in the sand, but I needed some knowledge at that point as I really wasn’t well. I needed to know if what I was experiencing was normal, or if I needed help. I didn’t want to ring my cancer nurse – I wanted to find out information about my diagnosis and treatment for myself. That is where I came across the information on the Lymphoma Action website, which was so helpful. I found engaging with the Charity, and going on to fundraise for them helped when it came to my mental wellbeing by providing a sense of escapism. I did work during my treatment but was honest with the business about what I could do as I had lost the ability to concentrate.

I had actually started to make jams and preserves during lockdown as a means of distracting myself from the pressures of work and went on to earn the nickname “Cheshire Jam Man”! I had a cartoon of the Jam Man drawn by a colleague who is a graphic designer and it all went from there really. People were saying I should sell the jams but I didn’t want the money – it was just something I enjoyed doing.  I thought perhaps I needed a cause, where I could ask people to donate to instead, and after receiving my diagnosis that became clear. Fundraising for Lymphoma Action through the sale of my jams, and further fundraising events has served a multipurpose for me. It has helped me when feeling rough after chemo, and it has helped the Charity to support others affected by lymphoma. 

I am currently on rituximab as a maintenance therapy. The drug itself is OK, but again the steroids given to me to manage any side effects cause me issues with insomnia and sickness. But I do feel like I am getting my energy levels back, and I am not experiencing any further symptoms. I have recently gone back to playing golf, and I do feel like I can focus more at work, but I can only do so much before needing a rest. I don’t feel like I am functioning at 100% yet and, as I am immunosuppressed, I am still being careful around crowds and avoid flying. 

For me, coming to terms with living with the condition has been my hardest challenge and I feel that for others who find themselves in that situation, it is vital to speak or listen to others who have been on a similar journey. The psychology of going through the cancer journey lives with you as it makes you realise your own mortality. But no one journey is the same, and the impact on people around you and who rely on you is different from person to person and there are different pressures according to your circumstances. I found that breaking down the areas of your life that you have concerns about, and identifying who could support with those problems really helpful. That’s where coming to charities like Lymphoma Action for information (but only as much as you can handle), and talking to people who have a similar condition to you really important. For men in particular that can be hard. It’s not necessarily a ‘blokey thing’ to want to open up, but from experience I can say how important it is to speak to somebody.

To anyone else in a similar situation, I would say how do you eat an elephant? The answer: one piece at a time. Don’t hide your problems – get them out there and work out how to tackle each one with support.  

Alister 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.