HELP IS AT HAND
`I didn't have support from anyone else who had been through this'
September 25, 2008
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Janice Biehn
SPECIAL TO THE STAR
Note: The photo caption has been edited to correct a previously published caption.
Reeling from the news that she would have to undergo a partial mastectomy, Karen Portelli headed home from William Osler Health Centre in Etobicoke.
"I was in the car crying, my husband was driving, and inside my head I heard this voice: `You're going to be all right, this isn't about you.'"
Today, five years later, Portelli, 46, is testament to that self-affirming prophesy as a moderator on Princess Margaret Hospital's Caring Voices website, an online community of support for cancer survivors launched in 2006 for breast cancer patients. This fall, the site will expand to support all cancer patients.
Although she depended on her parents and husband during her treatment (she eventually underwent a full mastectomy, hysterectomy and oophorectomy, the surgical removal of ovaries) Portelli says the information available to her at the time was scant and she didn't really know what to expect.
"I didn't have any support from anyone else who had been through this. I sterilized my home, anticipating the effects of chemotherapy. I even bought myself a new toilet seat, figuring I'd be throwing up a lot, but I never did get sick."
While undergoing treatment, she began updating friends and family via regular emails. What started as a small group eventually turned into a mailing list of 68 names. "People told me my letters helped them laugh, helped them cry."
That experience, and perhaps that voice in her head, led her to become a peer volunteer at Princess Margaret, where she received training and shared what she had learned with new patients.
"You can't understand what people are going through unless you've walked a mile in their shoes," says Portelli, who is the first to admit that the survivor gets as much benefit from helping as the patient. "There are moments you want to share with another survivor."
But Portelli had returned to her full-time job at Mark's Work Wearhouse in Oakville and, after a while, it was hard to find the time to get to the downtown hospital from her Etobicoke home.
PMH's Patient Education and Survivorship teams were launching a website supported by The Quilt: Support for People Living with Cancer, the Weekend to End Breast Cancer and the PMH Foundation. Portelli was tapped to become a moderator.
For decades, support groups have been bringing cancer patients together to talk about what others fear to hear. Though they have not been clinically proven to improve survival rates, studies have linked support groups to a dramatic increase in quality of life. And with the advent of the Internet, support groups have reached out further.
With moderated real-time chats and access to health-care professionals, Caring Voices is the first of its kind in Canada, says Sara Urowitz, manager of educational informatics and professional lead.
To become a member of the Caring Voices community, patients log on to the site and register by creating their user name (real or not) and choosing a password. They can then complete a profile that will allow them to take advantage of the find-a-friend option.
Besides peer moderation from survivors, the site also hosts online discussions with cancer specialists. Now, after two years, Caring Voices is ready to expand. "Our goal when we launched was to eventually provide support across Canada," says Urowitz.
With survivor groups of multiple myeloma, melanoma and gynecological cancers on board, the expansion is poised to help the hospital achieve its goal of "turning our organization inside out. We want to make the Princess Margaret Hospital experience available beyond these walls and have a global impact."
Toronto Star
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