Ethan, 26, has been living with Ewing sarcoma for the past three years and is now receiving palliative care. He says the support he’s received from our Willen at Home team has been life-changing, helping him both physically and emotionally.
Ethan is currently putting his energy into fundraising for the Hospice, including organising family and friends to take on a sponsored bike ride to Rome.
In late 2021 my life took an unexpected and devastating turn when I fell seriously ill. After months of worsening symptoms, scans and biopsies, I was diagnosed with Ewing sarcoma – a rare and aggressive form of cancer, with the primary tumour located in my kidney. By the time it was discovered, the cancer had already spread to my right hip.
I began an intensive treatment journey, undergoing six months of chemotherapy. This was followed by radiotherapy and in late 2022 two lots of major surgery to remove my right kidney and then partially replace my hip, in an effort to contain the disease.
“I set off to travel… But just before my trip began, I found out the cancer had returned.”
The following year I made the brave decision to give up work and live life as fully as I could. I set off to travel, determined to reclaim some joy and freedom. But just before my trip began, I found out the cancer had returned, this time in my left thigh.
Since then I’ve had many months of chemotherapy and radiotherapy, and a lot of complex surgery – some of which was unsuccessful and had to be fixed. In August 2024 I received the most difficult news yet. The cancer had returned again in my left knee and was now considered incurable. From this point on, my care became palliative.
“Willen at Home have given me the space to talk, and have definitely helped me in terms of opening up about everything.”
That’s when I first met the Willen at Home team. Ever since then, they’ve been a real big help. They check in every few weeks with me. They do all my pain management, so whenever I have an issue or I’m feeling more pain than usual, I can just call. They’re at the end of the phone. It means me and my family don’t have to go through my GP and various other processes for help. It just saves so much time and energy Willen at Home being there. They’ve also given me the space to talk, and have definitely helped me in terms of opening up about everything.
“I’ve been putting my time into organising a fundraising event called Pedal4Purpose.”
I’m not working because of all my treatment, so I’ve been putting my time into organising a fundraising event called Pedal4Purpose. It’s a two-week cycling trip from Milton Keynes to Rome, riding 120–150km each day, raising money for Willen Hospice and Sarcoma UK. There are about 15 people in the group. There’s my older brother, Matt, and my cousins – Jordan and Josh – who are twins. All the others are friends of mine. The group expanded as more people heard about it and wanted to get involved! A lot of them didn’t have bikes to start with, so it’s got them into cycling.
It’s become almost a part-time job. Which is good, as it keeps me busy and stops my days being just waiting for my friends and family to finish work. Because I can’t cycle, I’m looking after the website and social media promotion for the event. We had a fundraising target of £5,000 but we reached that quite quickly, so it’s now £10,000. We’re planning an auction raffle night in October to try to raise some more funds and there are other things in the pipeline.
I’m also keeping an eye on their training. We’ve got a Strava group, so I can see how far everyone is cycling. We do a biweekly training ride on a Saturday, and whoever’s ridden the least distance in the last fortnight has to wear a forfeit jersey. We haven’t decided what the jersey is yet. We’re looking for something that would be quite embarrassing to wear!
“I’m holding on to hope and facing each day with determination and an unwavering will to live.”
I’m currently undergoing yet another round of chemotherapy, to try to shrink two tumours in my lungs. My mobility is limited. I don’t know what comes next – none of us do. But through it all, I’m continuing to fight. I’m holding on to hope and facing each day with determination and an unwavering will to live. This is not just a story about cancer. It’s a story about strength and the relentless human spirit.
Despite everything and losing the chance to live the life I deserved, I remain happy and peaceful. I’m often found with my dog Stanley by my side. I keep myself busy fundraising, loving music and Formula 1, and simply taking each day as it comes. My spirit remains unbroken.
You can find out more about Ethan and his team’s fundraising at www.pedal4purpose.co.uk
