I'd like to share my story so that others can hear about my mental health troubles and how I am dealing with them. It's a stressful and weird diagnosis to be told that you have blood cancer but actually there's no need for any treatment and there might never be, because you're doing fine!’
I am a 43 year old graphic designer and illustrator who considers himself fit and healthy. In Feburary 2024 things changed quite dramatically as my wife and I had our first baby; a little boy. Of course, this came with its own challenges as we coped with sleepless nights and all the extra work a baby brings.
In May 2024, I noticed a lump on my neck. Two weeks later it was still there, so I made an appointment with my GP, who examined me and took my concerns very seriously. She organised for an ultrasound to be carried out, which was inconclusive. I was now on a 2-week fast track cancer screening. Everything happened in quite a rush with lots of tests and scans including blood tests, an MRI, a CT scan and a biopsy. All this was carried out by the head and neck department.
I was not feeling very concerned and had been told that the vast majority of lumps are nothing to worry about, but it was still important to have them checked out.
In June I was called in to the hospital to discuss my results. I went there with my wife and baby and was shocked to be told that I had follicular lymphoma. I can still so clearly recall that appointment, which was awful. I knew nothing about lymphoma and all I could think about was my new baby and how could this possibly be happening at this time?
The news was given to me by the surgeon from the head and neck team. I found the whole situation horrible and scary and wanted to ask lots of questions, but didn’t really know what questions I should be asking. He explained it was a blood cancer, but that it would be the haematology team who would be best placed to answer any questions I had and that an appointment was being made for me to meet with them.
I simply couldn’t understand why I wasn’t seeing them at that moment and why I would have to wait to have a more detailed appointment. I left that appointment feeling confused, frightened and angry. I went home and searched the internet, to the point my wife told me to stop searching and wait to speak to the right people.
Three weeks later I saw the haematology team and they were amazing. They had all the answers to the many questions I now had and put me at ease. I recorded that meeting so that I could play it back when I needed some clarification, which I found really helpful.
They explained that because it was a low-grade lymphoma and I didn’t have any troubling symptoms, they would take an active monitoring or watch and wait approach. In short, I didn’t need treatment straightaway. It took months to come to terms with the fact that my lymphoma wasn’t going to kill me anytime soon and that I didn’t even need treatment.
But it was a period where I was having panic attacks and crying and felt helpless and distraught. it was suggested I visit the Maggie’s Centre attached to the hospital which proved so helpful and I have done some counselling sessions through them which have been helpful. I also found Lymphoma Action and went to a Special Focus Meeting which was really valuable.
I think the most difficult part of my journey has been dealing with my mental health. I have a long history of anxiety and depression, as well as the challenges of dealing with our new baby boy. Throughout everything my wife and I were extra stressed and tired from having to take care of a small baby. The contrast of new life, and then having to deal with a cancer diagnosis was very very difficult, and still is. In fact, I think to start with I held back a bit in my relationship with my son, feeling frightened about getting too close. I think the experience has really taken its toll on my wife too who has been amazing throughout and given me so much hope and support.
I went through a period of needing to frantically keep myself occupied. As a graphic designer and illustrator, I decided to write and illustrate a comic book about my experience of a lymphoma diagnosis. So far I have completed 120 pages and I have found that putting my experience down in art has helped me process it.
It was agreed that I would have treatment with rituximab with the aim of kicking the need for any sort of treatment down the road from an average of 3 to 10 years, which is incredible. Not long after the rituximab treatment, I had another PET scan which showed I had responded really well andwas now in remission.
However in June 2025, I started to get really sick. I was sweating, coughing, feverish and really weak. My fever went up to 39 degrees and I called the specialist nurses and they told me to go to the hospital immediately. It turned out that my neutrophils were dangerously low and I needed a week in the hospital for medication to get my neutrophil count back up. It was a hellish week; my throat was sore and I felt dizzy and weak for ages. Eventually I recovered enough to be sent home and it hasn’t happened again thankfully.
After all that, we found the perfect little house for us near the seaside and we’re now going to the beach and eating fish and chips as much as possible. My care has been transferred to a hospital where I am now living and they only want to see me every 6 months because I’m doing OK.