18 July 2024
In June, a ground-breaking new State of the System report - a collaboration of four of the UK’s leading children’s and young people’s cancer charities including the Ellen MacArthur Cancer Trust – found young people’s cancer-related needs tended to increase five to six years after their treatment ended. Reasons included life transitions, such as moving into the workplace or going to college/university, late effects and ongoing physical and emotional impacts from their cancer, and meeting new friends, partners and/or colleagues creating stress around disclosure.
Through our In The Same Boat series, young people tell you themselves why they needed long-term post-treatment support, and how being with others who have been through similar things helped to turn their lives around. In the latest edition Ed, Amber, Sarah, Nabeel and Rachel talk about how returning to the Ellen MacArthur Cancer Trust helped to rebuild their self-belief and confidence after their cancer diagnoses.
Name: Ed
Age: 19
Diagnosis: Acute lymphoblastic leukaemia
“Having been diagnosed when I was two, finishing treatment when I was seven, I was just too young to understand it. When I finished treatment, I couldn’t understand what was going on. I boxed it up and didn’t want to speak about it. Around the age of 13, I thought this is too hard. It’s too much pent-up energy, anger and too many emotions to hold on to. I really needed a charity like this to understand my own story.
“Being able to come to it as a teenager, to meet people and to realise that I’m not the only person has meant that instead of it consuming my whole life like a beach ball, where I can’t see past it, it’s now like a little tennis ball and I can see everything. It has become part of my life rather than my whole life. I’ve only been able to gain that feeling and belief through these trips.
“Back home, you can explain it. You can explain the feelings, the emotions and the memories, and people can sympathise. But here, people empathise. You don’t need to explain yourself.
“I was very nervous before coming onboard, but this week has definitely changed my outlook. The work that charities like the Ellen MacArthur Cancer Trust do have made me want to face my own challenges. It was a long road, but now I feel like I’m in a place where I can volunteer, which is the best news and I’m really excited!”
Name: Amber
Age: 24
Diagnosis: Chronic myeloid leukaemia
“I have a chronic cancer, so I was treated at home for most of the time. I’ve only met one other person that has the same diagnosis as me and has cancer. It’s really nice to come and listen to everybody’s stories and meet people who have gone through similar experiences.
“I’ve been able to connect with other young people with a cancer diagnosis. The sailing is such a good way to get to know people because you’re working as a team and learning new skills, as well as living together and having fun with everything. When you put a lot of people in a boat together, it’s almost impossible to not make lifelong friends because you’re living in such close proximity to everyone else.
“Cancer is so serious and having a cancer diagnosis, a lot of the talk around that or in hospitals is really serious. Being able to come here and have fun, we can be childlike again.”
Name: Sarah
Age: 27
Diagnosis: Metastatic germ cell carcinoma (ovarian)
“I was 23 when I was diagnosed, so I was just outside of that young person bracket. On my first trip, I was scared and them coming back it’s just been better and better.
“My goal in life has always been to be happy. I don’t see the point in getting annoyed about things or holding into things. I think that is one thing that the cancer community has helped with. It’s given me more supportive tools for the people in my life.
“Sailing is something that I would never get a chance to do in my day-to-day life, but I keep coming back for the team and having people to talk to who actually know what’s going on. Even if you’re not talking about it, you’re all in the same boat. As cheesy as it sounds, it’s very true.
“For me, it’s a confidence thing to get back into the swing of doing things and I suppose being a bit more normal, but still doing that in a safe space where you know if something goes wrong, you’ve got the support you need. I’m now happy to talk to people and be seen instead of hiding in a corner.”
Name: Nabeel
Age: 18
Diagnosis: Neuroenocrine tumour
"Before the trip, I was quite stressed. I had A level exams, but knowing I was going to Flynne’s Barn helped me get through it and work through it.
“People go through a lot of things. The Ellen MacArthur Cancer Trust helps you to reach your full potential. You’re surrounded by people who have gone through what you’ve went through. It’s not everyday that you find someone who relate to you.
“On these trips, you can enjoy your life for once, even though you’ve had ups and downs. This is a time to relax, go on an adventure and step out of your comfort zone. With the COVID lockdown and my surgeries, it pushed me into a shell. But with the trips, I’m out here socialising. I can be more of an extrovert.
“Once you go home, you just constantly think about the trip. I really want to go back; I really wish I could relive those four days. Four days is so short, it goes in a blink of an eye.”
Name: Rachel
Age: 27
Diagnosis: Hodgkin lymphoma
“Having something to look forward to is always so important for anyone but especially when someone’s been through something like cancer. It keeps you pushing on.
“It’s lovely to think back. I remember the trips so well and I’m able to reminisce about what happened. It’s been such a positive experience. Each trip has been so enjoyable, and I’ve got to know lots of different people.
“It gives you time to reflect and everyone’s talking about what they want to do in the future. I’ve noticed a difference in myself because each year, I’ve been a bit older and it’s been like another year since my diagnosis, so I’ve been able to move on more each year.
“I’ve recently got the all clear from my hospital, they have discharged me after five years. The consultant said, ‘this is your five years gone now and it’s time to put it behind you and to move on.’ I think it was really nice because it means that you can move on yourself.