My name is Claire, I’m from Brighton, UK. I was diagnosed with FL in 2019 and I have Stage 3. I’ve been an NHS GP for 20 years.
I am 51 years old. I’ve been an NHS GP for nearly 20 years, I am married and have teenage kids. We have recently moved to the South Coast. I love spending time outdoors, I love walking and running and recently discovered how much I love swimming in the sea.
I first became aware of 2 small lymph nodes under my jawline when I used to sit with my chin resting in my hands whilst looking at documents and results on my computer at work. I was not at all worried, but they didn’t go away on their own and it was just one more thing on my long to do list to get them checked out. Neither my GP nor the Haematologist were especially concerned until an ultrasound of my abdomen showed I had an enormous mass on my spleen. It was not long before I was told I had FL and I was quickly on a fast track to chemotherapy. I had O-CHOP treatment and it worked very well. My post treatment PET scan showed no evidence of disease. Now I have been well for 6 and a half years.
I was totally shocked when I received the diagnosis. I felt a great deal of fear about the future. My main concern was for my children. Would they have to grow up without me? Before diagnosis I was planning to grow old gracefully, stay fit into old age, look after my grandchildren etc and to have that imaginary future taken away was like a kind of grief. Being told this is incurable was very hard indeed. I felt like ‘how can you just accept that this is incurable…surely there is something, some new research, some new chance’ but the Haematologists have always said there is no cure and it will come back one day.
I managed OK with the chemo. The main issues were nausea and tiredness. I had a lot of help from many friends who were wonderful at helping me to look after the kids. The chemo made me suddenly menopausal, even as a GP ( now with a special interest in menopause!) I didn’t realise until later that I was not only feeling so unwell from the chemo but because the chemo had turned my hormones off like turning off a tap! As soon as I realised this and started HRT I felt a lot better.
Being a doctor and an oncology patient at the same time was a really strange experience. I was in disbelief for a long time. I just could not believe that these things that I had learnt about and read about for years were now happening to me. I had always felt so strong, invincible almost. It makes you realise how vulnerable we all really are.
Getting well again, getting on with my life now and especially watching my kids grow up feels like a triumph. I feel strong again. We have recently moved to the coast which is something I have always wanted to do. I’m really happy that I have stayed well for long enough to achieve that.
I would say try to stay present as much as you can. A lot of my fear and stress comes from worry about a future that hasn’t happened yet. I would encourage people that things will get easier in time. I feel much more positive now and have many days where I don’t think about lymphoma.
Connect with others with FL if you can. You are not alone, it’s easier when you are part of something bigger.
Try fundraising for the FLF, it feels great and gives you something positive to focus on! I did a marathon walk (emphasis on the walk!!) with my friend on the south west coast path. We raised around £2000. It was a fantastic experience.
I found meditation to be hugely helpful. It gave me some rest from racing thoughts. I was so fearful during the initial diagnosis process, just waiting another hour let alone another week for the next scan result seemed unbearable. Focusing on my breathing and trying to bring myself back to the present was an enormous relief from fears about the future. I really love the Calm app. I recommend this to lots of patients too.
I’ve done lots of things to keep myself healthy, diet and exercise wise and I have found focusing on that has given me a feeling of control over what was an uncontrollable situation. Haematologists don’t tend to want to comment much on lifestyle measures but I know that feeling completely helpless in this is not healthy for me .
Doing some drawing and reading are also great for helping to keep me calm and positive. Walking in nature and swimming were really good. When I’m swimming in the sea I’m saying in my head ” ha look at me lymphoma, you’re not stopping me!”...maybe one day I shout it out loud too!
