My name is Ben, and I was born in Australia, however I have been living in London, England for the past 17 years. I was diagnosed with follicular lymphoma in 2017 and underwent chemotherapy treatment in 2017/2018. I have been in remission since then.

I knew something was wrong even before the doctors gave me the news. I had noticed a lump in my neck and was subsequently referred to various departments at the hospital to undergo scans and further tests.

When I received the news that I had follicular lymphoma, I immediately thought to myself: ‘What do I need to do to overcome this?” Whilst it was disheartening to learn that FL is a chronic illness, it didn’t stop me from taking on board the medical team’s advice in those early weeks and months.

I lost my hair during chemotherapy which was an initial shock. I also lost weight and would often experience hot temperatures from the medication I took during treatment. I tried to maintain a regular routine with cycling to work, light exercise and seeing my friends and family. 

My name is Elaine and I live in Israel. I was born in Manchester, England, but I emigrated to Israel in 1972 aged 17. I am a mother of three and a grandmother of eight. I retired three years ago.

I was diagnosed in July 2021, Grade 1, Stage 4. Initially I was diagnosed with Marginal Zone Lymphoma, but after having a biopsy of a node removed from my arm the diagnosis was amended to follicular lymphoma, which I thought was better as this is a more common lymphoma with a tried and tested protocol. When cancer was first mentioned, albeit indolent lymphoma, I was taken aback, but on reading about indolent lymphoma I thought if I was to get the dreaded “c” this was a more benevolent type!
I sought a second opinion and was about to start treatment when, because of Covid, it was suggested I stay on ‘watch and wait’ and in the meantime get two different pneumonia vaccinations and my fifth covid vaccine.

In December 2022 I had a biopsy on my arm, also my haemoglobin was dropping, and my spleen enlarged, and so it was decided I should start treatment with Bendamustine and Obinutuzumab. The first dose of Obinutuzumab was a bit challenging as I had a reaction and had to have extra steroids. As a diabetic this made my blood glucose skyrocket that evening, but by morning things calmed down. My main problem is and was fatigue. I reckon I am lucky because after the first treatment I reacted well, my spleen shrank immediately, and I had no dire side effects. So far, I feel there have been more triumphs than challenges. I had a PET scan today, so will have to see what is instore. I am due for maintenance.

My family have been very considerate and loving. At the beginning I kept away from my small grandchildren or wore a mask. As time went on, I was still cautious but less stressed. The older grandchildren knew grandma got tired a lot and did their best to take that in consideration! My husband signed on as my carer, as recommended by my hospital social worker, because I was fatigued a lot (and undergoing chemo) but did not have dire side effects. Subsequently, I was only entitled to a few hours care a week from social security. It is very hard to come by carers, especially in the country where I live, and as my husband is retired that was a logical step. I kept my close family and friends at home and abroad updated every month and they gave me lots of emotional support.
Letting friends know about my FL was important. Optimism and humour were certainly a big help- and during treatments I danced and joked with the medical caring clowns, equipped with my own red nose! I always took my wonder woman mascot doll to treatments.