I am a community nurse and thought it was something like Bell’s Palsy. I eventually got an ophthalmology appointment and the consultant examining it was unable to turn my lid to examine it, so organised for a biopsy to be taken from my eyelid.

Two weeks later I was diagnosed with follicular lymphoma, which was something I was not familiar with. I had 10 sessions of radiotherapy to the eye and had to travel quite a distance for the machine needed. Because I was unable to drive after my treatment, I needed to be driven, which was a challenge as it meant I couldn’t work at this time. The radiotherapy was OK and after the first or second session, I was able to open my eye again, which was great. Once the radiotherapy finished my eye became inflamed, red and painful but that only lasted a couple of weeks.

“I was then told I would be on active monitoring (watch and wait). As a nurse, I understood this approach and was quite happy with it. I just wanted to get back to work.

Six months later I found a lump in my neck. I got back in touch with my medical team and they organised to have the lump biopsied. The biopsy came back as follicular lymphoma, but a PET scan lit up other areas including my abdomen. I was getting a lot of reflux, heartburn and feeling uncomfortably full all the time. The growth on my neck was becoming quite visible and while I was happy to stay on active monitoring, my medical team wanted to biopsy it with a view to treatment. The biopsy results showed that my lymphoma had transformed to diffuse large B-cell lymphoma. There’s really no easy time to start chemotherapy but I realised that I now needed treatment.

I had six rounds of R-CHOP chemotherapy. I was not hospitalised as my temperature was always fine, but I can best describe how I felt was like having a hangover without having the alcohol beforehand. I got into the pattern of chemotherapy, recognising that for the two weeks after treatment I would feel rubbish, I would then have one week of feeling back to normal and then I was back to the next round of R-CHOP. I thought I would be fine about losing my hair, but it came out in great clumps, which I found quite traumatic. Once it had gone it felt both strange and liberating.

The PET scan revealed I had a complete metabolic response to the treatment, and it looked as though I would not need any further treatment. But my case was discussed at an MDT, and it was agreed that I needed radiotherapy as a preventative measure. It was not what I wanted, but I trusted their opinion. I was to have 15 rounds of abdominal radiotherapy and this time I could drive myself. I felt a little tired and struggled with needing to be somewhere every day. After the treatment with radiotherapy I struggled with bowel difficulties for a while. I have follow-up appointments every three months at the moment but am feeling well, apart from the peripheral neuropathy on my feet which isn’t affecting my mobility but makes it difficult to settle at night-time.

“I’ve reflected on this time with my three sons who are 33, 30 and 23. They said that they thought I had managed really well and made it easy for them.

My treatment finished in June 2024 and in July 2024 I had my first grandchild. I was the first to see my granddaughter (below); now that’s something to celebrate, isn’t it?