They go by many monikers: warrior princesses, bosom buddies, women alike, breast friends. They gather in every province, in most cities and scores of rural areas across the country. They take part in a multiplicity of activities: talking, singing, arts and crafts, reading, exercising, quilting, even rowing.
They are women with a common experience: breast cancer. And they're there to give and receive support.
Cancer-support groups are far from unusual but what sets apart the breast-cancer bloc are the sheer numbers and the variety.
"There are so many and I'm amazed at the things they do," says Dianne Hartling, a board member with the Canadian Breast Cancer Network (CBCN) and a past-president of the Ottawa chapter of Breast Cancer Action, one of the first support groups, now nationwide. She notes that the CBCN website lists about 150 English and 150 French groups. "You'll find support groups in most Canadian cities and each one caters to the needs of its own community."
There are groups for young women and older women, city dwellers and rural residents, and various ethnic groups. One in Toronto serves lesbian and bisexual women; Sister to Sister in Timberlea, N.S. is a group for black women; a number have formed around the country's Aboriginal populations, to support their unique culture, spirituality and approach to healing.
The proliferation of groups dates back nearly two decades, Hartling says.
"Back in about 1992, women across Canada started to organize. Breast Cancer Action was one of the first. Then other women decided they wanted something in their communities to provide information and to be able to talk with someone who had gone through the experience. From that they just multiplied."
Hartling believes one reason the groups are so numerous is simply the vast number of breast-cancer patients and survivors. While the number of women being diagnosed continues to grow, so does the survival rate, she says, thanks largely to the advocacy of women for more information, more research and better treatments.
While many groups take a more traditional tack with discussions, seminars and information sessions, others focus on special interests.
There are choirs - like The Lymph Notes in Winnipeg and the Central Cancer Survivors Choir in Grand Falls-Windsor, Nfld.
There are numerous arts and crafts groups. "Sometimes if you want to get your anger out, you can do it through art, or through writing a diary," Hartling notes. Quilting, which is good for fundraising, has its own niche in this quarter.
"There really are a lot of choices, so much so that for some women it can be overwhelming," says Karen Chow, of Oakville, who tried a number of avenues following her diagnosis in 2004. "There's information, education, peer support, group support, just about anything."
For her, it was information that was important, particularly in the beginning. After doing some internet research, she called Willow Breast Cancer Support Canada, a Toronto-based group that provides peer support through groups and a national phone line. Through that organization, Chow says she found invaluable resources and answers to her questions. Today, after two operations, chemotherapy and radiation, and a continuing regimen of Tamoxifen, she is providing that same peer support to others.
Exercise, Hartling says, is important for maintaining health and these groups are also plentiful. But certainly the largest network of breast-cancer survivors in the country has taken exercise to new lengths. These are the dragon boaters, paddling teams that race in narrow 12-metre-long boats. This program started in 1996, when Vancouver sports-medicine specialist Dr. Don MacKenzie set out to determine whether repetitive upper-body movements would increase the chances of lymphedema, swelling caused by accumulation of fluid following removal of lymph nodes.
Not only did MacKenzie discover that the exercise could actually prevent lymphedema, he spawned a phenomenon. Today there are breast-cancer-survivor dragon-boat teams in virtually every province, often Hartling notes with intriguing names like Windsor's "A Breast or Knot," Ottawa's "Busting Out!" Vancouver's "Abreast in a Boat," or Nova Scotia's "Cape Breastoners."
Darlene Prager, 66, a breast-cancer survivor and dragon boater from Cavan, near Peterborough, Ont., is the founder and president of the national Canadians Abreast dragon-boat team.
"I didn't want a traditional support group," Prager says. The dragon boaters have all gone through the journey and are there for each other in good times and times when the disease reoccurs.
Prager cites the story of a member of her Peterborough team who participated at an international event in South Africa and then stayed on to do some personal touring. Following an accident that laid her up in hospital, a message came to her home team via a member of Vancouver's Abreast In A Boat, who then offered her email as a conduit for Peterborough members to send messages of support to their comrade.
"It all happened because of a link with other breast-cancer women across Canada and that's a true support group and a worldwide support group," Prager says. "We paddle across the country and around the world and meet breast-cancer women, make lasting friendships. That's the beauty of it."
But regardless of the focus of the meetings, the most important thing about these groups, Hartling stresses, is the need that they fill in the lives of the members. When she was first diagnosed with breast cancer, some 20 years ago, she avoided support groups but says her later involvement with Breast Cancer Action showed her their value.
"What I found was that it was a warm and friendly environment," she says. It was a place where the women understood what the others were going through and could talk frankly and with an empathy that often wasn't there with friends and family who had not been through the experience. "You learn that you're not alone and you have a network of friends who will be there for a lifetime."
Hartling recalls once reading a report that said joining a support group doesn't extend life but it does give a better quality of life. "I think quality is very important and peer support is very important." Certainly, there are thousands of women across the country, who wholeheartedly agree.
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WE WELCOME INPUT: Have you got a unique story of life-changing support as a breast-cancer survivor? Please email it to dwall@metroland.com and we'll compile the stories into a special editorial feature. Email photos as well.
