Personal experience
Ben's story
Ben’s diagnosis of follicular lymphoma will not stop him from living life to the full.
Before my lymphoma diagnosis, I was working as a Learning and Development Manager. I enjoyed DIY, dog walks with my husband along Eastbourne seafront and going on holiday!
I noticed that I had lost a large amount of weight in a relatively short period of time, and was also experiencing extreme fatigue, night sweats and itching. My husband encouraged me to go to the doctor, but I never imagined that the symptoms I was experiencing could be cancer. From there it all happened very quickly. After having routine blood tests at the GP surgery, I was called the next day and urgently sent to hospital as some markers were extremely high. What followed was a three-week hospital stay filled with scans and biopsies, before I eventually got my diagnosis of follicular lymphoma in September 2021.
Being told that I had lymphoma was completely unexpected, as I am sure is the case for many people living with cancer. Although I’d heard of non-Hodgkin lymphoma, as a relative was diagnosed with it about ten years beforehand, I wasn’t fully aware of the condition, and I did not know it was a type of blood cancer. I found myself faced with a lot of uncertainty. I’m someone who likes to understand situations, plan ahead, and feel in control and this was something that I couldn’t plan for. While it was unsettling to face something beyond my control, I also discovered a strength I didn’t know I had. Underneath the questions and worries was a clear determination to face whatever lay ahead, take each step as it came, and remain positive and resilient.
“ Naturally, my thoughts turned to my loved ones and what this might mean for them as well as for me.
As I write this in September 2026, I have not undergone any treatment to date, but I am on active monitoring, with blood tests and reviews with my oncologist every three months. Things are good at the moment. I’ve continued to work, and we live life to the fullest and enjoy every moment. The plan continues for me to remain on active monitoring for the foreseeable future.
Since my diagnosis, it’s been important for me to understand what is happening to me, in clear, relatable terms rather than in medical jargon. Lymphoma Action played a vital role at that point in my journey. The information they sent me helped me make sense of my diagnosis and my active monitoring programme, giving me clarity at a time when everything felt overwhelming. Just as importantly, through Lymphoma Action’s Facebook Support Group I’ve been able to connect with other people with lymphoma. Building friendships with others who can comprehend what it’s like has been incredibly reassuring. Knowing that you are not alone, and that others are walking a similar path, is truly priceless.
Living with lymphoma on active monitoring tests you in quiet, relentless ways. I have always tried to maintain a positive outlook on life, but since my diagnosis this mindset has grown even stronger. Living with lymphoma has given me a renewed sense of perspective and a deeper appreciation for what my body and mind are capable of. I actively seek out new challenges now, both mentally and physically, because they remind me that I am still in control of my life. I recently ran the London Marathon for Lymphoma Action, which was amazing! A cancer diagnosis can change many things, but it does not have to define you or limit what you can achieve. I am determined not to let lymphoma stop me from living fully, pushing myself forward, and continuing to do the things that matter most to me.
One of the most important lessons I’ve learned is not to compare myself to others. No two people are the same, and no two lymphoma journeys are alike. We all move through diagnosis, treatment, monitoring, and life with lymphoma at our own pace, and that pace is valid. Whatever your journey looks like, it’s important that it feels right for you.
I’ve also learned how vital it is to ask questions, as many as you need. Your doctors and nurses are there to support you, and you should never hesitate to ask them to explain things again, or say it in a way that you can truly understand. Feeling informed and listened to makes a huge difference, and it helps you feel more confident and empowered as you navigate your own path.
Reading personal stories of others has played a huge part in my own journey, offering reassurance, comfort, and hope at times when I needed it most. If sharing my story helps even one person feel less alone or more hopeful about what lies ahead, then it is something I feel truly honoured to be part of.
