Facebook for cancer patients
Engaging again ... the power of social support. Photo: iStockphoto
Socially isolated women are 34 per cent more likely to die from breast cancer than their counterparts who have strong support from family and friends, a study of 2200 women found.
Now, new websites are being established to help.
The Cancer Council began Australia's first social networking site, Cancer Connections in 2009 and now after seven years in the making, website Cancer.im launches on February 15.
Bev Fink. Photo: Steve Lunam
It is designed to connect patients around the world in the same style as Facebook.
Dr Kevin Buckman, a co-founder on the site, says the platform is intended a one-stop-shop where people can connect and find information and research papers on the more than 200 types of cancer.
The importance of social support to physiological and psychological health is a critical, yet underutilised resource for people when undergoing cancer care, say researchers from the University of Washington.
Bev Fink, 65 who was is now in remission from uterine cancer, found Cancer Connections invaluable after her diagnosis. "Everyone says 'It'll be alright' but if they haven't been through it themselves, how would they know?" she asks. "I wanted to speak to someone who had been through it... when you have cancer, you don't know whether what you're feeling is normal."
By connecting with others who are having the same experience "you know you're not alone," she says.
"It's this drastic, drastic event in people's lives and we want to help them through," says Buckman. Connecting with others "gives them hope... When they're educated they don't have to be a number and there's an opportunity to live better... it is also an opportunity to share their experience and wisdom."
It also lets sufferers tell friends and family how they're going and whether or not they are to having visitors or phone calls.
Cancer sufferer Suleika Jaouad wrote about wanting to cut herself off from friends after her diagnosis, in the New York Times last year.
"My self-imposed exile weighed on me," she said. "As hard as it was to relate to my peers — 20-somethings starting new jobs and new adventures — I missed my friends. And my disengagement started to worry them."
After a time, she began to reconsider her Facebook silence. "Slowly, I started to reveal bits and pieces of what I was going through. First, I posted a picture of myself wearing a pink scarf that covered my head. Next, a picture of me wearing a big blue hat, my long brown tresses clearly missing. And later, a picture of me nearly bald, with just a sprout of very fine baby hair. I had put myself out there. And there was no going back. I now officially had cancer, on Facebook."
Gill Batt, Director of Cancer Information and Support Services at the Australian Cancer Council says Facebook is an effective form of keeping in contact but many patients prefer a site where they can have more specific connection with those in a similar situation.
"Often people are posting in the middle of the night," she says. "They are awake and have no one else to talk to. You know that if you go to this site you will find someone who has a similar cancer experience and ... people want to offer help and support to other people. It's kind of a mutual support system."
Cancer Connections now has 2484 patients and supporters currently registered with 120,000 visits last year. While 20 per cent of those visitors were from the US and 10 per cent were from the UK, it is targeted towards Australians because it offers local information. It includes advice about financial assistance and specific treatments.
Such sites, as well as providing social support, aggregate information, which saves on search time "so patients can focus on getting better," as Buckman says.
Suleika Jaouad found social networking soothing and an important support.
"For the first time since I’ve been sick, I feel connected to a responsive community I hadn’t previously known existed," she wrote.
"I like hearing from other cancer patients, and their caregivers, who share with me their own stories and wisdom. And for my friends, this has been an opportunity to witness and engage in an ongoing conversation about what it means to have cancer."