Hi, my name is Ben, and I live in Eastbourne on the south coast of the UK. I am at stage 4 FL and was diagnosed in 2021.
I live with my husband Bradley; we have been married for 11 years this year but have been together for 22 years. We live in Eastbourne; I was born in Nottingham, but we moved away in 2016. I work as a Learning & Development Specialist and have been with my current company for 9 years. We have a 4-year-old Italian greyhound called Luigi. I love to travel and visit new places, both internationally and within the UK. I’ve a keen interest in DIY and home improvement.
When I found out about my diagnosis it was completely unexpected, as I am sure is the case for many people living with FL. I had lost quite a large amount of weight in a relatively short period of time and was experiencing extreme fatigue, I put it down to work as was extremely busy at the time, but my husband encouraged me to go to the doctor. They ran a full blood screen which showed an extremely abnormal liver function level, so I was sent for a scan. They thought I had a blockage in the bile duct so sent me for a CT scan, this then led to an initial diagnosis of bowel, lung and lymph cancer due to abnormalities seen on the CT. Following this I had further diagnostic assessments which confirmed I did not have bowel cancer.
I was then hospitalised for 4 weeks where all assessments were run again, along with more testing which were used to cross off what I was dealing with. On the 2nd to last day of being in hospital the final test result came back which was the bone aspiration which confirmed I had low level stage 4 follicular lymphoma. This is what was also showing up on my PET scan in my lymph nodes, and was making me feel generally unwell.
This was a bittersweet moment as I knew what I was facing, which was a relief, but hearing the words “incurable” is very hard to comprehend, not just for me but for my loved ones.
I have been very fortunate that I have not had to receive any treatment to date and have been kept on regular watch and wait. Currently I have 6 monthly check-ups, however due to some irregularities in my check up in December 2024 they have put me back to 3 monthly.
Initially I found it very hard to deal with a cancer that is incurable and not have any treatment for it. Personally, I found it easier to deal with my initial misdiagnosis of bowel, lung & lymph as this fitted the “normal” protocol of diagnosis and then treatment and how to fight it.
My personal triumph is coming to terms with the cancer that I have, whilst not letting it dictate what my life holds for me, I live life to the fullest with a positive outlook on everything. Whilst also being appreciative that I will have days where I’m tired, & that my immune system is weakened, and I will pick up things more.
I have recently completed the Brighton 10k run, in aid of raising funds for FLF. To date this has raised over £800. This was a huge challenge for me as I am not naturally the fittest and most energetic person, but the crowds and the thought of helping others got me through. I also did a walk with my dogs a couple of years ago to raise funds. These events have encouraged me to commit myself to doing something completely out of my comfort zone every year now.
My support and advice would be to talk about everything you’re going through, and how you are feeling, BUT only when you feel ready to as this is a very unique cancer to be living with. I would also encourage to reach out to others that are living with FL via social media and other sources as I found this massively helpful to chat to others in a similar situation.
Above all else, live your life to the fullest and continue to make happy memories that will last a lifetime for you and your loved ones.
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