By Debra Wood, RN, contributor
A breast cancer diagnosis turns a woman’s life upside down. It’s a time of great emotion. Women often turn to fellow patients and survivors to share thoughts and feelings. The BreastCancerStories.com website lets them reach out to one another.
“There is a desperation to connect with a survivor, who is several years out, living life, happy and doing well,” said Jacqui Bryan, BA, RN, MS, a breast cancer survivor and cardiac rehabilitation nurse in New Hampshire.
After receiving a breast cancer diagnosis, in 2003, Bryan began journaling and keeping in touch with family and friends by email, then she met Wendy McCoole, executive director and founder of BreastCancerStories.com, and started online postings.
“Journaling and writing your story, for me, was therapeutic,” Bryan said. “It helps keep everything straight in your mind, and it also helps control the rumor mill. Some people had me dead and buried. It was exciting to take control and disseminate the accurate data.”
A University of Kansas study, released in 2000, reported that women who express their emotions about breast cancer and treatment do better than women who keep their feelings inside. One way to do that is through writing.
BreastCancerStories.com, a nonprofit organization, evolved from McCoole’s original site, www.baldwendy.com, which she began to help keep friends and family up to date about her breast cancer treatment. She included a guest book so friends could leave notes.
“Those messages were so healing, knowing I had so many people supporting me,” McCoole said.
McCoole soon began hearing from total strangers who found her story helpful, so she decided to grow the concept and created BreastCancerStories.com.
More than 125 breast cancer patients have posted their stories, and 10,000 people visit the site each month. There are no fees to participate. McCoole raises money through grants, donations, T-shirt sales and fund-raising events. She accepts no salary.
The site keeps the person’s contact information private but provides a way for people to contact each other through the site. Visitors can find stories written by someone in their geographic location or by diagnosis or treatment.
“With any support group environment, it’s critical to the someone’s well-being to connect with other people going through something similar,” McCoole said. “It’s so healing to realize you are not alone.”
BreastCancerStories.com supplements but is not intended to replace in-person support groups. However, it’s available 24 hours a day, seven days a week.
“Typically, the time you feel most desperate and scared are the hours most other people are sleeping,” Bryan said. “On the Internet, you have the ability to connect and communicate with people at different times of the day.”
Diane Zaidlicz, RN, a nurse in the oncology clinic at Portsmouth Regional Hospital in Portsmouth, New Hampshire, tells patients about the Web site.
“It’s a great idea,” Zaidlicz said. “People get the support they need in an anonymous way, especially those not ready for a support group or one-on-old counseling.”
Most people add stories as they are newly diagnosed and periodically add to them. McCoole reaches these patients through clinicians and other support organizations. Bryan thinks it’s a beneficial site to introduce people to and informs everyone who joins her support organization, Breast Friends, about it.
“You never know what it’s like until you get cancer,” Bryan said. “Having been a health-care provider, I didn’t like being on the other end. It found it a humbling experience. What I thought I knew about my patients when they under went a serious illness is completely different.”
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