My name is Thomas and I’m from Ireland. I am at stage 4 with FL and was diagnosed in November 2024.
I work in healthcare quality assurance, and I am also a qualified barrister. I am an avid artist and paint a lot, I like walks with my dog, Wilbur, and reading.
I was initially sent to A&E with abdominal pain as my GP suspected various causes such as kidney stone or appendicitis. A CT was performed, and they discovered a 17 cm mass in my abdomen which was suspected enlarged lymph nodes. I was admitted immediately for tests and after further CT scans, a biopsy and ultrasound, I was discharged pending the outcome of the biopsy. I received a call from the consultant two weeks later where he said I had cancer; it was a type of lymphoma known as follicular lymphoma. I was to wait a further in person review with a hematologist.
For me, waiting to hear I had cancer was worse than the diagnosis itself. When I was told, I felt a sense of confirmation and conclusion to the battery of tests. I am a very organized person so all I wanted next was the care and treatment plan. I chose to try to be as rational and positive as I could be, telling myself, “I am in this situation now, so let’s get on with it”.
The hematology review came within days and my wonderful consultant was very caring, reassuring and patient centered. She arranged a PET scan and bone marrow biopsy, which revealed that I had Stage 4 FL. It was terrifying looking at the PET Scan and seeing areas of cancer all over my body. I was reassured that this was the norm for lymphoma and that treatment would help.
Subsequently, I am now I am on RCHOP—this will be 6 cycles in total. I have had 2 cycles so far with minimal complications.
Actually, just going and getting chemo for the first time was a huge triumph. I was terrified it would be a traumatic experience and yet, it was the complete opposite. Is it OK to say I had a good day on the hematology / oncology ward? The staff were incredible and talked me through everything and had even sat with me. On the downside, my challenges include losing my self-identity. FL has currently taken my ability to work, changed how I look, limits my routine, made my question my purpose. I’ve learnt that It’s important to be kind to yourself on the bad days.
I often hear the experience of living with FL referred to as a journey. I’ll start by saying that if you or your loved ones have or had cancer and the word journey resonates with you, by all means use whatever metaphor helps you.
For me, cancer is not a journey.
A journey is something planned, something anticipated with excitement and something you choose to do, to create memories. It’s walking the Camino di Santiago, or interrailing through Europe with friends. A journey is not being stripped of your identity, your purpose, your career, your routine and your everyday life. A journey isn’t something that if you don’t undertake, you will die.
I’m also not brave, bravery implies choice, like running into a burning house to save your child. I didn’t choose cancer and didn’t choose to go through treatment. I am just going through the motions and treatment required to align myself with health again.
This is by no means pointed at anyone who uses the word journey, because everyone does. It’s on every hospital wall, in every medical professional’s lexicon, on every cancer charity website. It frustrates me because journeys come to an end and my “journey” never will. I will go into remission, but I won’t be cured and for the rest of my life, I will worry about it coming back. So, my “journey” is my life now. One I’m very grateful for and one I plan to live for a long time.
If I could offer support or guidance to others in the FL community; genuinely, all I can advise is to be kind to yourself. If you are going through treatment like me, try to make time for some self-care, read the books you’ve always wanted to, and sleep! Sleep as much as you wish, rest and recover.
I would just like to acknowledge that I couldn’t have gotten through the last few months without my dog Wilbur, my husband Gareth and my best friend Marie.
