Riding the waves: Stephen’s story

For Stephen Downes, the ocean around Newquay, Cornwall, has always been a place of purpose. As a lifelong surfer, his relationship with the water was redefined in the spring of 2022 when he noticed a golf ball-sized lump in his neck. The discovery immediately sparked concern, appearing in the exact location where he had successfully treated Hodgkin lymphoma more than twenty years earlier.

Six weeks later, Stephen received a rare diagnosis: myxofibrosarcoma, a soft tissue cancer that sees an average of only 178 cases a year in England. To save his life, clinical teams sub-sequentially performed a radical 12-hour forequarter amputation, removing his entire left arm, shoulder, collarbone, three ribs, and part of his chest wall.

The physical transformation was immense, but Stephen refused to let it distance him from the life he loved. Today, he is a consecutive two-time English kneeboard champion, works part-time for Disability Cornwall, and is actively growing his own independent coffee brand, Dawn Patrol.

Adjusting to life after such an extensive operation brought unique trials. Waking up from the surgery, Stephen initially contended with severe phantom limb sensations. Returning home meant navigating an abrupt transition from constant medical supervision to sudden independence.

“I often describe life as a recent amputee as similar to having a newborn baby,” Stephen reflects. “Once you return home from hospital, you are inundated with visits, calls, and messages. However, those calls and visits quickly come to an end once people know you are doing okay. You are left to figure it out for yourself and get on with it.”

Stephen figured it out by moving forward. Exactly one year after his surgery, he entered the Welsh Adaptive Open and secured second place in his category. Having previously been a stand-up surfer, he adapted his style to kneeboarding, a discipline where riders kneel on the board. His dedication has earned him the title of English kneeboard champion for two consecutive years.

Beyond the surf, Stephen has reshaped his professional life. Alongside his part-time role supporting the local community at Disability Cornwall, he launched Dawn Patrol coffee twelve months after his operation. He is currently focusing his energy on expanding the business into his sole source of employment. He also volunteers his time to raise awareness for Sarcoma UK, sharing his experiences to help others find stability after a life-altering diagnosis.

Back to main page