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A Public Trust

Cancer Patients Connect and Cope by Blogging the Journey

“I am not an angry person,” she begins.

“In fact, I will pat myself on the back and say that I have not even been angry with God about this situation. The way I look at it, all you have to do is open the newspaper to realize that life is not fair. People suffer randomly all the time.

“However, I am angry about one aspect of my cancer. I take great care of myself. I have always been at my ideal weight. I eat tons of veggies and no red meat. I exercise. I go for annual mammograms, and I get my teeth cleaned every six months. My cholesterol is 119.

“And it didn’t do me a damn bit of good.”

Those are the words of Jayne Byrne of North Carolina, written soon after her March 2006 diagnosis, at age 41, of Stage 1 invasive lobular breast cancer. As she launched into treatment — which included an initial lumpectomy followed by a bilateral mastectomy, four rounds of chemotherapy, and more — she began to chronicle her experiences on Jayne’s Breast Cancer Blog (

Over the past three years, he has chronicled her struggle as a breast cancer survivor, but more importantly, her blog is a snapshot of everyday joys and struggles — a reminder that life goes on, even when it throws a wrench into well-laid plans.

Byrne is not alone. It’s impossible to know how many of the tens of millions of blogs on the Web deal with cancer, but it’s a significant number — and growing.

The phenomenon makes sense to Marlene Quinlan, an oncology social worker at Baystate Medical Center, who likened the blog trend to old-fashioned journaling — only with a very public twist.

“In general, journaling has many therapeutic benefits,” she said. “Writing things down can be as effective as talking with someone else about what you’re experiencing. Talking about things that are stressful in your life helps you alleviate some of that stress. There have been some studies done about journaling, and they found that it actually boosts your immune function. So physically, it has some positive effects.”

Life Goes On

Peruse some of these online journals, and it’s easy to be overwhelmed by the fear and gratitude, the anxiety and the clear-eyed observations, like this one from Jacki Donaldson of Florida.

“I must say it feels good to go to bed each night knowing I’ve survived for 1,277 days. My neighbor is not so lucky. She was diagnosed with breast cancer — my same disease — a little more than six months ago. She had it removed — both the cancer and her breast — and already, the disease is back. It’s back in her breast tissue. It’s made its way into both lungs too. Doctors are calling it stage IV. Hospice is calling on her already.

“‘She’s no young girl,’ her husband told me last night when we passed each other in the neighborhood. But she is. She’s 73. In my book, that’s young. I don’t want to die at 73. She shouldn’t need to either. But it’s happening. And there’s nothing anyone can do to stop it.

“1,277 days. I’m one of the lucky ones.”

Donaldson launched My Breast Cancer Blog ( in December 2004 to chronicle her experiences with cancer, everything from chemotherapy to how much she appreciated a gift of fuzzy socks. Like most well-read blogs, reader comments pile up after each post, making the journey of survival a shared one — and that, too, has its benefits.

“Cancer can be very isolating,” Quinlan said. “You can feel like you’re going through it alone; even if you have lots of support from family and friends, you’re the one going through it. To feel a connection with people who are going through similar experiences can be very beneficial.”

It’s important to note that the typical cancer blog is not an authoritative source on the disease. For that, Web surfers can turn to something like Dr. Len’s Cancer Blog (, written by Dr. J. Leonard Lichtenfeld, deputy chief medical officer of the national office of the American Cancer Society. Several times a week, he posts information on everything from screening and prevention to simply coping with cancer, all with the authority of an expert.

Most cancer blogs — the vast majority of them written by women and focused on breast cancer in particular — are simply a way to sort through emotions, share stories, be empowered with information, and laugh and cry on virtual shoulders.

“Blogging can help you cope with the ups and downs of cancer treatment,” writes Lisa Fayed, a medical writer and cancer educator, on “Regardless of what stage of cancer you have, it is never easy. Writing your thoughts down can release emotions that you have been holding in or reveal fears and other emotions you didn’t know you had.”

In addition, Fayed said, blogging allows friends and family members to track the writer’s progress, forges connections among cancer patients, and allows readers to feel like they’re not fighting on an island. “There is instant comfort in knowing that you are not alone.”

Good, Bad, and Ugly

“Chemotherapy side effects are worse than cancer, that’s for sure. With cancer, most of the time you’d hardly know it if some doctor didn’t tell you. I mean, I was pretty hard up by the time they found it in me, but sometimes cancer can go all the way to stage IV and you’d never know it.

“Chemo, on the other hand, you can never forget that. Not for a second. There’s no ignoring chemotherapy. It invades every cell by the end of it. You spend months marinating in a stew of toxic wastes that are out to kill you. And I don’t think that’s overly dramatic. You try it sometime and see if I’m not right.”

That’s from Dave, who doesn’t offer his last name on his blog, Chronicles of a Cancer Survivor (preservationrecords. com), but does offer a blow-by-blow primer on what he went through to overcome Hodgkin’s disease in 2005 to 2006.

In such candor lies a danger for some, Quinlan said, noting that neither blogging nor reading cancer blogs is for every patient.

“If you find you’re going onto blogs and getting upset by what you’re reading, then that’s not a good idea, and you need to find another way to cope,” Quinlan said. “Journaling can help people figure things out, but if you’re reading about someone else’s cancer and becoming overwhelmed and worried you’ll have all these problems, it’s probably not helping.”

That’s advice that applies to any type of coping mechanism, she added.

“Each person has their own unique experience, and everyone copes differently,” she noted. “When I meet with somebody, I ask, how has this person coped? What has been helpful, and what hasn’t been helpful? Then I can make recommendations. But I think everyone should do what works for them.”

Byrne already knows what works, especially on days of elevated anxiety, wondering what that small, just-discovered bump means:

“Not that anything of substance has changed since last night. But this morning I feel like I can breathe again. And that ‘it’ is probably not cancer. And if ‘it’ is cancer, then I will not allow it to spoil even one more day than is necessary.

“But such is this journey. Up and down. I can’t always be the breezy Jayne who is thrilled with life, who has been taught well by the cancer experience, and so on. Sorry.

“I am off to have a normal day, folks.”

And then to write about it.

Joseph Bednar can be reached at[email protected]

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