Terence Shimwell has a rare form of skin cancer. Instead of letting his diagnosis get the better of him, he has realized the importance of adventure and adrenaline, and has created a movement to benefit those in a similar situation.
Think about the following situation.
What would it be like to wake up one day and realize that life as you knew it was gone? That the body you were looking at in the mirror would never be the same? Have you ever thought how it would affect your self-esteem if you no longer looked the same to everyone you knew? How would you feel if people stared at you – sometimes blatantly, others shyly? Looked at your body with questions in their eyes and on their lips?
Have you ever questioned your being, your purpose, your motivation? Terence Shimwell has. This is his daily reality. With his easy-going nature and infectious smile, it’s hard to believe he has faced these demons head-on. But it’s this journey of self-discovery that he hopes will help others face theirs.
Terence’s Story
In 2009, Shimwell was an outgoing, popular, sporty teen attending Pretoria Boys High School. He noticed a bruise on the inside of his thigh that seemed to be constant. He thought nothing of it. After all, he was constantly on the sports field, so he was bound to get bruises – “right?
But the bruise never healed. Instead, it started to get bigger. In 2012, while studying in Cape Town, he decided to have the bruise checked out. The diagnosis was shattering. Cape Town dermatologist Dr Mahendren Moodley diagnosed a rare form of skin cancer: CTCL-MF (cutaneous T-cell lymphoma – mycosis fungoides). Shimwell doesn’t know how or why he got this condition, or why it manifested the way it did. It’s believed there is a genetic link, but there is no history of cancer or skin conditions in his family.
At the time, he didn’t worry too much about the diagnosis and how it would affect his life. Then the bruises started spreading, appearing on his arms and legs, sometimes in scaly patches.
From physical to psychological
“I am a naturally confident person, but this started to knock me. People would stare and ask questions, and I started to become irritated.” Shimwell, who has always enjoyed surfing, running, cycling and being outdoors, became very aware of his appearance. For the first time, he started to question the effect his condition was having on him. “My condition was no longer a physical one; it had become an emotional and psychological one.”
There is no cure for his condition and, as it is so rare, doctors know very little. “I would lie awake at night and think about how I could change my current situation and prevent myself from becoming part of the 10% who land up with a progressive case.” He found himself anxious and questioning. “How could I be this confident person, yet feel this way?”
Looking beyond himself
Even more revealing, he realised that if he – who has always been comfortable in his own skin – felt this way, what about all those people who have been living with a skin condition or disability who have always felt this way?
He approached his best friend Mark Goldacre, a physiotherapist, and his fiancé Isabel Schutte, a registered dietician. Together they developed R.A.D – a movement powered by Facebook that aims to promote optimism and good health through endurance and outdoor sports. “We wanted to create a platform that promotes mental strength and adventure outlets for people to use and adopt into their lives,” he says.
R.A.D stand for Recognition, Action and Discovery, and it stems from Shimwell’s journey. “I recognized my illness, I acted, and then I set out and discovered who I really was with this extra passenger in my life.”
Living life to the full
Interestingly, unlike other skin cancer conditions, this particular one seems to improve with light therapy or being in sunlight. Shimwell doesn’t know his long-term prognosis, other than that there is no cure. In the last year, he has noticed a marked increase in the number of bruises and skin patches. He is on symptomatic treatment and says he is doing all he can. He lives a healthy lifestyle, and this means eating healthily, exercising, no smoking and limited alcohol intake.
But his condition hasn’t stopped him from living life to the full, and he hopes this will inspire others. Through social media, he and Goldacre explore the adventures they enjoy, while offering advice on fitness, nutrition and wellbeing. They plan on tackling endurance events to promote a healthy outlook to others who may be facing similar life-changing events.
“We hope to create a movement for people to join, a movement that will expose people from all walks of life to the benefits of adventure, new experiences and physical activity,” says Shimwell. “I use my boosted mental state to overcome any psychological and subconscious feelings I may have towards my condition, and it’s this living a life of R.A.D that I want to encourage others to do as well. If this helps just one person, encourages just one person to get out there, and show who they are without fear or self-loathing, but rather the person they can be, we have achieved our goal.”
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What is CTCL-MF?
This rare condition is not easily diagnosed, because the symptoms and skin biopsy findings are similar to those of other skin conditions. Experts believe it may be related to some type of viral infection resulting in a chronically heightened immune state. Other theories include genetic changes and chemical exposure, but the actual causes remain unknown.
According to the Cancer Association of South Africa, most cases are not genetic or hereditary. It occurs mostly in those over 20 years of age and is more common in men than women. The two most common types are mycosis fungoides (MF) and Sézary syndrome. MF is the most common form of cutaneous T-cell lymphoma – a type of non-Hodgkin’s lymphoma. There are fewer than 40 000 known cases of MF worldwide. Skin symptoms include patches, plaques or tumours. Patches are usually flat, may be scaly and look like a rash; plaques are thicker, raised, usually itchy lesions that are often mistaken for eczema, psoriasis or dermatitis; and tumours are raised bumps, which may or may not ulcerate. It is possible to have more than one type of lesion. A medical history, physical exam and skin biopsy are essential for diagnosis. A physician will examine lymph nodes, order various blood tests and possibly conduct other screening tests, such as a chest X-ray or a CAT scan. Scans are usually not needed for those in the earliest stages of the disease. Most patients with CTCL experience only skin symptoms, without serious complications; however, approximately >10% can develop more serious symptoms. Some patients may not progress to later stages at all, while other may progress rapidly, with the cancer spreading to lymph nodes or internal organs.
