Personal stories

Being a doctor and an oncology patient at the same time was a really strange experience. I was in disbelief for a long time. I just could not believe that these things that I had learnt about and read about for years were now happening to me. I had always felt so strong, invincible almost. It makes you realise how vulnerable we all really are.

I try to live in the moment and be grateful for what I do have. I know the likelihood is that I will need treatment further down the line, but I try to remain as positive as possible and feel reassured that there are teams across the NHS and beyond who will be there to support me when it’s needed.

In April I will be running the London Marathon helping to raise funds for the Follicular Lymphoma Foundation.

The surgeon said, ‘so the diagnosis is follicular lymphoma’ and I just sat there listening to him talk. Then I asked what kind of doctor I would see and when he said ‘an oncologist’ that’s when it hit. Oh wow. That’s a cancer doctor. I have cancer.

I found a lump on my right thigh and was worried it would be a hernia. I went to the doctor and discovered I had a cancerous lymph node. After diagnosis, it felt heavy. Like a shadow descended over my life.

I remember everything about the day I was diagnosed with FL. And I remember my husband crying for the first time since our sons’ births.

My name is Nicolas, and I am from Omaha, Nebraska in the United States. I am at stage 3 FL and was diagnosed in 2024. I am a Union Ironworker, and I live with my girlfriend and our six-week-old baby girl.

My name is Lori and I’m from Alabama, USA. I have stage 3A FL an was diagnosed last year, 2024. Once you are diagnosed and have a clear plan, you will get in a fight mode. It’s important to be aware that for some people the full realization of what you’ve been through may not hit you until after treatment is over.

My name is Angela. I live in New York State in the US with my husband of 37 years, who has always been my rock. I have Stage 4, Grade 3A. Over the past year, I’ve come to the realization that “living” and “existing” are two completely different things. This will surely inform my future treatment decisions. I want to live!

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. When I found out about my diagnosis it 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.

My name is Thomas and I’m from Ireland. I am at stage 4 with Fl and was diagnosed in November 2024. I often hear the experience of living with FL referred to as a journey. For me, cancer is not a journey.

My name is Lora, and I am from the United States. I was diagnosed in 2022 and am currently at stage 3 follicular lymphoma. I knew something was going on with me, but I just wasn’t sure…

My name is Ana Paula. I’m 61 years old and live in Florianopolis, Brazil, where I work as a civil servant. I am currently at stage 3 FL and was diagnosed in December 2023.

Meu nome é Ana Paula. Tenho 61 anos e moro em Florianópolis, Brasil, onde trabalho como servidor público. Atualmente estou no estágio 3 FL e fui diagnosticado em dezembro de 2023.

I was diagnosed with stage 4 follicular lymphoma at 25 years old. Before my cancer diagnosis I was in my mid-twenties and life was very exciting. The moment I found out I had cancer, is one that I’ll never forget.

I was diagnosed with stage 4 follicular lymphoma at 25 years old. Before my cancer diagnosis I was in my mid-twenties and life was very exciting. The moment I found out I had cancer, is one that I’ll never forget.

My name is Laurilyn, and I am from the USA. I am married and a mom to two kids and am now retired.

My name is Buddy and I bring a story of hope and determination with my song, “Call My Name.”

My name is Bonnie and I’m from the United States of America. I am 62 years of age and work as a registered nurse on a general pediatric floor

My name is John Armitage and I Iive in the UK. I am married and have two daughters and four grandchildren.

My name is Raphael and I live in Brazil. I’m a 34-year-old lawyer from Brazil who loves this mysterious life.

My name is Mary Catherine and I live in Canada. I’m 40 years old and a mom to 6-year old twin girls.

I’m Katie from the United States. I am a 41-year-old mom of 2 boys and a 16 year cancer survivor. I have recently been diagnosed with FL.

My name is Alina, and I am a 31-year-old mother of 2 beautiful children from the United States..

My name is Don, and I am 68 years old. I live in Phoenix, Arizona and am married. The picture is of me aged 25 on a cross country bike ride.

My name is Michaela, and I am a 55 year old trans woman living in England. I was diagnosed in 2018 and been in remission for 5 years.

I’m Caroline from the United States. I am a wife, mom, dog lover, and three-time stage 4 non-Hodgkin’s follicular lymphoma thriver.

I’m Paul from Scotland, married with 3 daughters and recently 2 cute grandbabies. I am currently in a partial remission stage.

My name is Paul and I’m from the UK. I was diagnosed with follicular lymphoma, stage IIIA, in October 2022.

My name is Carolyn and I live in the United States. I’m a 28 year old teacher and I am stage 4 follicular lymphoma.

Mi nombre es Raquel, y soy de Barcelona, España. Hace siete años, mi vida dio un giro importante cuando me diagnosticaron linfoma folicular.

My name is Raquel, and I’m from Barcelona, Spain. Seven years ago, my life took a major turn when I was diagnosed with follicular lymphoma.

I’m Nicola Mendelsohn, the founder and chair of the FLF, and I wanted to share my story of being diagnosed with follicular lymphoma.

I’m Nicky, from Australia, 42 years old, married with two amazing kids. I’m studying to be a Clinical Nutritionist with the plan to help FL Patients learn to eat well and live well.

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.

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.


My name is Paul and I live in the UK. I have stage 3 FL and I found out about my diagnosis at work over the phone following an ultrasound and then CT scan.

My name is Wendy. I am a 59 year old retired mechanical engineer and I live in the United States with my spouse, special needs daughter, and dog. I have also raised three adopted children.

My name is Chrissy and I live in the United States. I love my hubby/caretaker and we enjoy car shows, boating, and our animals.

My name is Emily, and I am British and live in Oman (Middle East). I was first diagnosed after a bit of a long journey of investigating persistent nausea and gastro issues.

I am 48 years old, live in England and am married with 2 daughters, aged 14 and 17. I am an assistant head in a primary school.

My name is Anna and I live in Spain. My journey with FL started in October 2018 when I was 34. When the year started, I only had a strong wish for that year: to start a family.

My name is Steve and I live in Australia. I recently retired after 40 years in the IT industry (and by recently I mean it sort of all was decided upon last Monday) I am divorced with three adult children.

My name is Simon. I am 71 yrs old, married to my all suffering wonderful wife Linda for 45 years.

Nicky shares her FL story and her amazing journey which lead to her establishing the Living with Follicular Lymphoma social community Facebook – the largest