In an awe-inspiring display of human resilience, Stephen Downes, 49, has defied seemingly insurmountable odds to become a national surfing champion after losing nearly a quarter of his upper body to a rare cancer.
The resident of Newquay, Cornwall, had his entire right arm, shoulder, collarbone, three ribs, and part of his chest wall surgically removed in a 12-hour operation after he was diagnosed with rare sarcoma cancer.
It was in spring 2022 that Stephen noticed a golf ball-size lump in his neck. It was in the exact spot where he had Hodgkin lymphoma more than 20 years previously. Immediately, he feared the worst. In 1998, Stephen had volunteered for a clinical trial for his lymphoma – 20 sessions of radiotherapy in a month. Though he had been cured, it was the levels of radiation he received then that he believed caused his sarcoma.
The day after finding his lump, he saw his GP, which started a whirlwind period. Not that Stephen knew what sarcoma was when he was diagnosed six weeks later. ‘I had never heard of sarcoma, I thought it was something to do with glaucoma.’ He had myxofibrosarcoma, a soft tissue sarcoma of which there are an average of 178 cases every year in England.
He was then given the shocking news that he would need a full forequarter amputation. He said: ‘It was like an atom bomb going off in my head. I assumed I would be having chemotherapy. I never envisaged they would have to cut off my arm.’
Stephen’s immediate concern was how he was going to survive a 12-hour operation, rather than how he would be able to adjust to life as an amputee. Fearing the worst, he recorded video messages for his family before the surgery. In August 2022, just ten weeks after spotting the lump in his neck, surgeons removed a tumour the size of a mango that was between his clavicle and rib cage.
Prior to the operation, Stephen had been told there was no guarantee that surgeons would be able to remove the tumour. If not, they would not proceed with the amputation, stitch him up, and Stephen would have been put on palliative care. So there was a sense of relief when he woke after the operation to find his arm gone. ‘I just felt relief at being alive,’ he said. But now he had to deal with having a phantom limb – a condition in which patients experience sensations in a limb that no longer exists. ‘My arm was itching…but there was no arm,’ said Stephen.
‘I often describe life as a recent amputee as similar to having a newborn baby. As with a baby, once you return home from hospital, you’re inundated with visits, calls and messages not only from friends and family but also from various healthcare professionals. However, much like with a new arrival, those calls and visits quickly come to an end once people know you’re doing okay. You are kind of on your own, left to figure it out for yourself and get on with it.
‘The care and treatment I received from the NHS was first class and saved my life; from the skill and expertise of the surgeons, to the care and compassion of the nurses, to the healthcare assistants who took care of me every day. To all those people, for all they did – I’ll always be incredibly grateful.’
Incredibly, six months after his surgery Stephen was back on a surfboard and has become a national champion. Previously he had been a stand-up surfer but decided to start kneeboarding, which is when surfers kneel on their surfboard. In August 2023, one year after his surgery, he took part in the Welsh Adaptive Open and came second in his category. He has been English kneeboard champion for two years in a row.
Stephen reflected on life as an amputee: ‘Being an amputee has been a real eye-opener. It has given me an insight into what it is like to be in a minority group. You can feel people look at you.’ He added: ‘But it still feels like something that has happened to someone else, as if I am a voyeur.’
Stephen, a telecoms engineer who lives with his wife and three children, gives talks about resilience to schools in his area. He also wants to raise awareness of sarcoma and the work of the charity Sarcoma UK. ‘The more I have learned about sarcoma, the luckier I feel, there are so many sad stories of people who don’t survive. It seems like a particularly malevolent cancer.’
Carly McDonald, Support Line Advisor for Sarcoma UK, praised Stephen’s remarkable journey: ‘Stephen’s story is a powerful testament to the incredible strength of the human spirit. His determination in the face of such a life-altering diagnosis and extensive surgery is really inspiring. Stephen embodies the resilience we often see in sarcoma patients, but his achievement in returning to championship-level surfing is extraordinary. His willpower not only drove his personal recovery but also serves as a beacon of hope for others facing similar challenges. Stephen’s journey reminds us all of the importance of supporting sarcoma research and awareness, as well as the potential for life after a sarcoma diagnosis.’
