Online support group program lets cancer patients, caregivers connect via keyboard

TORONTO – Jim Lennox has been on both sides of the cancer fence — for many years as primary caregiver to his wife, then after her death as a patient himself.

In both cases, Lennox turned to an innovative online support group called CancerChatCanada, based at the B.C. Cancer Agency and operated in partnership with cancer care centres in several provinces across the country.

The program, formally launched in 2010, allows people with cancer and caregivers across Canada to come together in secure live chat rooms to share their stories and feelings with the help of a trained therapist.

For Lennox, who lives in Chilliwack. B.C., where there were no face-to-face support groups for caregivers, CancerChatCanada was a lifeline at a time when he was struggling emotionally with his wife Susan’s metastatic breast cancer.

“It is extremely difficult being a caregiver because you feel so alone,” Lennox, 70, said Thursday from his B.C. home. “There’s nobody you can share your feelings with. There’s nobody you can talk to. You tend to lose friends because they don’t know how to deal with you or with the patient.

“So you tend to feel isolated.”

Joining the weekly text-only online support group allowed him and the six to eight other caregivers in the chat room to explore their feelings while remaining anonymous except for first names.

“We talked about all sorts of things — from just doing housework to partners’ feelings to sex life. There was no topic that was not covered,” he said.

“I looked so forward to Wednesday at one o’clock,” Lennox said of his chat room time slot. “It was a release.”

Psychologist Joanne Stephen, who helped found and heads CancerChatCanada, said the program is a low-tech but powerful way to bring together small groups of people affected by cancer with counsellors who wouldn’t otherwise be accessible.

“That was a lot of the reason we wanted to do this, because we’ve got competent therapists in urban centres (but) not with that kind of training typically in more rural areas,” she said, noting that some support group participants live on farms more than 100 kilometres form a major city.

For cancer patients, it’s not geography but effects of the disease or treatment that prevent them from attending an in-person support group; and for some caregivers, looking after a loved one with advanced cancer may mean an inability to leave home for even a short time.

“What we’re really trying to do is create an avenue for support to the people who are needing it the most and who are less likely to be able to either access professional support or to find peers,” Stephen said from Vancouver.

The therapist plays a key role, moderating the discussion, offering emotional support and making sure every person on the chat line takes part, especially since the text-only format can be “very busy and quite fast-paced,” she said.

“The other thing the therapist does is to keep things safe and also accurate in terms of information that gets exchanged,” said Stephen, explaining that without a facilitator, exchanges within support groups can get quite heated due to charged emotions.

“What happens in (these) groups over the course of 10 weeks is that people really feel they get to know each other very well and they become very connected and very bonded. They give a lot of encouragement and support, and care and kindness gets expressed in these groups.”

Cynthia Theberge, a mother of two boys in Whitehorse, Yukon, signed on to CancerChatCanada after being treated for breast cancer last year.

She had earlier joined a face-to-face support group in Whitehorse but wasn’t always able to attend the once-a-month sessions because of fragile health related to her treatment. And when she wanted to resume after completing chemotherapy and radiation, there was no support group available.

CancerChat allowed Theberge to take her laptop into the privacy of her bedroom, where she could join her online support group, one set up specifically for younger women with breast cancer.

“After my first meeting, I came out of that room and my husband looked at me and he said, ‘You know, it’s funny, but you seem lighter.’

“It wound up being an appointment that I had each week that I really, genuinely looked forward to. I really valued the time that I got to spend with the women that I met,” said Theberge, 43.

“It gave me an outlet where I could explore feelings and talk to other women who had experienced similar things … it took away the sense of isolation.”

Stephen said the anonymity of the text-only chat rooms allows people to express their feelings more openly without feeling judged or worrying about being talked about later. “One person said to us it’s like talking behind a screen: you can speak more openly; you feel less vulnerable.”

Lennox agreed there is freedom in the anonymity of the keyboard.

“On a keyboard, I could sit there and quietly cry and nobody could see those tears, as you’re not only telling your own story but you’re listening to other people’s stories. And their stories may be a lot worse than what you’re going through as a caregiver.

“It would have been a lot tougher for me to go through the final stages of Susan’s life if I hadn’t had the chat line.”

As it turned out, his wife’s death in 2010 didn’t mean his contact with the program was over. A year later, Lennox was diagnosed with head and neck cancer and once again turned to CancerChatCanada — this time with a new group of peers dealing with different kinds of cancer but with similar feelings and fears.

“I can’t tell you what it did for me,” he said of the support he received both as a caregiver and a patient. “To me, the value was immeasurable.”

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Online: www.cancerchatcanada.ca