Sailing trip inspires young Luton cancer survivor to open up about illness and support others

A young cancer survivor from Luton has joined a charity to share his experience and support other young people battling the illness.

Omar Rafiq, from was diagnosed with acute lymphoblastic leukaemia in 2016. He embarked on a transformational sailing adventure six years later with the Ellen MacArthur Cancer Trust, which aims to inspire young people living through and beyond cancer to believe in a brighter future through outdoor activities.

And now the 22-year-old has joined the trust’s Youth Advisory Group, a link between the hundreds of young people the charity supports every year and its Board of Trustees.

After opening up about his illness with other people his own age for the first time on that four-day sailing trip from East Cowes on the Isle of Wight, he returned for further support in 2023, before joining the Youth Advisory Group.

Omar said: “I want to be part of the group as, being from a Pakistani background, I want to break down barriers and encourage different ethnic communities to come on these trips and access support having been through treatment.

“Being part of the group means I get to share my experience of what I went through when I had chemotherapy too.”

The group aims to amplify the voices of young people, and puts them at the heart of its decision making, to help shape the impact of the trust and the delivery of its sailing and outdoor adventure trips. Its members provide vital insight into how the charity helps young people battling and recovering after cancer.

As an example, the group recently helped the trust to understand what young people of different ages want from trips, and influenced its approach to chronic fatigue on sailing and outdoor adventures.

After his sailing trip in 2023, which took place on Scotland’s west coast, Omar said: “It’s helpful to hear about everyone’s experiences with cancer, because in ‘the real world’, not a lot people like talking about illnesses. They feel like they’re being judged or want sympathy, and that’s not the case. They just want to be understood.

“Normally, I’m a very reserved person, I don’t like talking about my feelings with anyone. But talking with other young people here who’ve had cancer, we are so similar. We understand each other and what we’ve been through. Others don’t.

“Sailing gets you away from everything, it gives you a space that’s just for you. If you’re struggling, it helps a lot, just that time away to clear your mind. It makes me feel more relaxed. It’s like a therapy session.”

The Ellen MacArthur Cancer Trust takes young people aged eight to 24 on sailing and outdoor adventures to inspire them to believe in a brighter future living through and beyond cancer.

The charity says cancer in young people often leads to lower educational achievement, relationship and friendship difficulties, body image issues, and/or ongoing late effects, such as extreme fatigue, infertility, osteoporosis, thyroid problems and hearing or vision loss.

For many young people simply picking up where they left off before their diagnosis is not possible, which is where the trust comes in.

Visit the trust website for information on how it can support.