I’m Nicola Mendelsohn, the founder and chair of the Follicular Lymphoma Foundation, and I wanted to share my story of being diagnosed with follicular lymphoma.
My life was in full swing as a working mother of four when my world took an unexpected turn in 2016. It all began with a seemingly innocuous discovery – a small lump in my groin. I called a friend who is also a doctor to ask her advice, and she quickly arranged for me to see a specialist in London. At first, the specialist thought I was fine, but a scan revealed I had tumours scattered throughout my chest area. I was just 45 years old, much younger than the typical age of diagnosis for follicular lymphoma.
The weekend of my diagnosis was the darkest moment of my life. I was overwhelmed with fear, wondering if I would live to see my children grow up. My husband and I decided to gather our kids, aged 11, 14, 18, and 20, and break the news to them. It was a heart-wrenching moment, seeing their shock and fear.
I learned that for my type of cancer, early treatment didn’t significantly change the outcome, so I ‘watched and waited’ for 18 months before starting chemotherapy and immunotherapy in 2018, when the cancer began to encroach on my kidneys.
The journey through chemotherapy was at times physically challenging and lasted six months. I had 14 sessions of chemotherapy, all while working remotely. My commitment to work was a conscious choice. It kept my mind from dwelling on the illness, and I felt a sense of normalcy in the midst of treatment.
During this time, I became deeply engaged with a Facebook group called “Living with Follicular Lymphoma.” With the help of its founder, we expanded the group from a few hundred members to now over 10,000 from all corners of the globe. It has become an incredible resource for patients, offering a lifeline of understanding and encouragement.
My cancer is thankfully now in remission, and I only go for check-ups twice a year. However, like other FL patients, the uncertainty of its return looms. That’s why my husband and I founded the Follicular Lymphoma Foundation in 2019 – to advance research on treatments, find a cure and provide hope to others.
I realised the value of the life I had, filled with love from my family and a job I cherished. This diagnosis reinforced my belief in living life to the fullest, cherishing every moment, and making memories with the ones I love.
My journey with follicular lymphoma has been one of challenges, resilience, and compassion. I hope that by sharing my story and engaging with the FL community, I can offer solace and strength to others facing this battle. Together, we can navigate the uncertainty, find hope in the darkest moments, and appreciate the precious gift of life.
