Boyd is one of a growing number of cancer patients turning to the Internet to discuss their disease, keeping friends and family updated, and connecting with other patients, according to oncology social workers and psychologists. Personal blogs, listservs, and sites like CarePages, CaringBridge and Breast Cancer Stories give patients an outlet to express the emotional turmoil associated with the disease, enabling a virtual catharsis for some. That was the role blogging played for Robert and Donna Gregory, the Long Island couple who died when the plane ferrying them to Boston for medical treatment crashed last week. Donna Gregory chronicled how leukemia had affected her husbands health and the lives of herself and the couples twins.
And Leroy Sievers, a former television newsman who died last week of colon cancer, gained an extensive following with a blog and commentaries presented by National Public Radio. While there hasnt been much research done on the relatively recent phenomenon, patients attest to its many benefits. And two Ohio State University researchers, conducting one of the first studies on cancer patient blogs, said their preliminary findings suggest that online journals indeed help.
Its definitely not hurting these folks ... its a good means to express yourself, said one of the researchers, Jennifer Moreland, who is earning a masters of health communication. These folks will look back over the last few years and say: Look at what Ive come through. Hopefully, someone else can read this and survive as well.
After analysing 50 blogs, the researchers found that detailing the rigours of the illness online seemed to help patients cope. While research on cancer patient blogging may be scant, studies on the healing effects of writing are abundant, said Harriet Berman, a clinical psychologist with the Wellness Community-Greater Boston, a nonprofit that provides support and counseling free to cancer patients and their families. Theres a very empowering process that goes on when cancer becomes something you can write about. Its not just this thing thats invaded you, she said.
But, Berman said, blogging does have its downside. The danger to the individual, I suppose, is that some people could expose themselves more than they maybe want to, she said. But I think the danger is more in the potential misinformation to other patients, who might read the blog before they themselves reach such a point in the course of their illness.
Boyds husband, Bryan Harter, urged his wife to start a CaringBridge page after hearing about the site at the Dana-Farber Cancer Institute, where he works as an oncology social worker. The sites, which can be password-protected, allow caregivers and patients to give frequent updates without fielding dozens of phone calls, he said, but they also provide the patient with an emotional outlet. It really causes you, in the midst of having the rug pulled out from under you, to think about what you want to say and what you want people to hear, he said.
Boyd, 37, said she remembers writing and rewriting that wig post.
The first version was probably my own cathartic dumping out of all my own feelings, said Boyd, of Jamaica Plain. And I remember realising ... I could edit it a little bit and still get out some of those feelings without overwhelming people, but also letting people know it was really tough.
While that connection to loved ones is important, linking into a community of fellow bloggers in similar straits can also be critical, said Tim Cummings, a Wellness Community social worker.
NYT / Neil Munshi