How a Hong Kong cancer sufferer keeps going – and helps others to do the same
Diagnosed with a rare and lethal form of skin cancer at birth, William Chan has defied the odds with wit and a positive attitude, and, through his NGO Say Yeah, helps fellow Hongkongers in need of support
Constant pain and daily discrimination take their toll, but cancer sufferer William Chan Wai-lam embraces life, and death, with a dark sense of humour.
Defying the odds of long-term survival after being born with a rare skin cancer, 35-year-old Chan now has hundreds of black moles covering his face and body. His condition progresses as he ages, he says. “One day I could be a black person, if I am still alive. Yo man!” he shouts, waving his hands in the style of a rapper.
The incidence of non-melanoma skin cancer is rising in Hong Kong, up 65 per cent from 2005 to 2014, from 569 cases to 941 cases. The type of melanoma Chan has is rarer, with 78 new cases in 2014, and more lethal.
His first doctor told his family he would not live beyond age three, then seven, then 11. “How can a doctor be wrong about my death so many times?” asks Chan, who rejected chemotherapy treatment.
Chan, who staged his own “living funeral” five years ago, says cancer patients should not blindly accept advice from doctors. “No one knows how long or short you will live,” he says. “You can control your life, your body, your mind, and you can control your doctor – and tell him to shut up.”
Not all medical experts are misguided, he says, but he encourages people with cancer to seek a second or third opinion.
When he was 11, Chan was told he needed multiple skin transplants, with no guarantee he would be better off or even survive the operations.
“My father asked if I could die if I did these surgeries and the doctor said ‘yes’, so my dad chose for me to die at home rather than the hospital,” Chan says. His parents taught him about living moment to moment instead.
He thanks his family for instilling a deep faith in himself. “My parents always support me to do anything … since [I was] three years old they encouraged me to do what I like,” he said.
He encourages others not to limit themselves, and to chase their dreams. “Everyone can change at every moment; it’s only you that chooses [to do it] or not, it all depends on you.”
This approach, and realising his chief goals, sustains him. Today Chan is a cancer speaker, educator, and founder of non-governmental organisation Say Yeah, which offers support to those in need, including young people contemplating suicide and others who have lost loved ones to cancer.
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Chan wants to foster frank conversations about mortality, to change the death culture, and tackle taboos about discussing such themes, particularly in the Chinese community.
According to Chan, it’s hard to get Hongkongers to discuss existential topics and many prefer to talk about their all-too-consuming work life instead.
Pain is a constant companion for Chan but he does not let it show. Every turn in bed, every hand he shakes, brings acute discomfort, like rocks digging in. It takes a mental toll, too, especially when others discriminate against him. Taxi drivers regularly refuse to take him.
Chan wears his cancer like a badge and says “no one is an outcast because everybody has their own value that no one can take away from you”. He has published a book about his life, and grabbed headlines with his 2012 funeral. He encourages others to do the same, to celebrate their life with loved ones, and write and share their last thoughts with others.
At his living funeral, complete with prayers, music and mourners, Chan offended some with his honesty, but he has no regrets.
“If you show true feelings, you can’t imagine how others would respond. Since my living funeral, my relationships with friends and family members [have] gotten closer.”
His NGO supports patients dealing with cancer. In Hong Kong, he says, end-of-life care is limited beyond the medical part of the process but Say Yeah offers support throughout, including for bereaved families.
He recently helped a young woman plan her own funeral, arranging vibrant coloured blooms – not the usual white ones – in her floral arrangements. She died the next day.
Extensive research shows the importance of social support to cancer patients’ mortality and well-being. A study led by Ann Chou, of the University of Oklahoma’s College of Public Health, published in Psycho-Oncology in 2012, found a link between social support and the survival of women with breast cancer.
Patients with increased contact with friends and family post-diagnosis had lower risk of death. The research showed those with greater support had enhanced coping skills and managed stress and fear better.
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Tammy Leung, a director of service at Hong Kong Cancer Fund, says support is essential in the diagnosis, treatment, rehabilitation, palliative and survivor stages. Social support helps spread the load of the many tough decisions needed along the way.
“When they share their experience with their [fellow cancer peer] supporter for example, they are less scared about what will happen, and learn to ask the right questions for the doctor or nurse so they won’t miss out on important information,” Leung says.
Such support offers dual benefits: “Information-sharing and emotional support from peers can make cancer patients feel understood and reduce their feelings of anxiety; if you are too anxious or distressed, it can be hard … to make right decisions about treatment.” Better decisions from patients on treatments and rehabilitation, or even finding the right doctor to trust, all affect a patient’s outcome.
Chan tries to support and improve the quality of life for cancer patients and their carers, such as by attending treatment sessions with fellow patients. He also checks in on bereaved families, especially during Lunar New Year or other festivals when the pain of their loss may be amplified.
“So much love comes to me,” says Chan, describing the reactions from these people as overwhelming, and akin to acquiring “20 new sets of parents”.
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His time is increasingly dedicated to helping young people rethink their suicidal thoughts. “Do your parents know this?” he may ask in online chats. “Do you have any regrets? If so, why?”
He says death should not be seen as an escape from life, and hopes his questions will help others understand that.
“Many people misunderstand that ... I’m just talking about death, it’s no different to [people openly] talking about Jesus and the Bible.”
For more information or donations to Say Yeah, visit http://sayyeah.org.hk or email firstname.lastname@example.org. For more information about Hong Kong Cancer Fund’s call centres, including English-language services, or details about its social support groups and programmes for cancer patients, call 3656 0800