Blogging Your Way Through Cancer

WHEN 39-YEAR-OLD STEVEN RICK was diagnosed with metastatic melanoma earlier this year, he decided to “go public” with his diagnosis on Facebook. While the outpouring of love and support was bolstering, Rick says, it was also overwhelming.

“As an educator and coach, I had 16 years of relationships that all came back to me in an instant,” he says. “Despite my best attempts to keep up with private messages, I didn’t have the time or energy to individualize my responses to people that genuinely cared about me.”

Thus, Steven’s blog, Declaring War on Metastatic Melanoma, was born.

One of the most difficult aspects of navigating a cancer diagnosis is learning how to manage your time. Cancer is a full-time job. When you add a “cancer to-do list” to your pre-existing “just plain life to-do list,” every minute counts and is accounted for. Whether you tell your inner circle of friends and family or the whole of your social media community, once you’ve shared your diagnosis, the onslaught of messages commences.

This is a good thing, as the support of friends and family is critical for someone living with cancer. However, the very last thing a patient with cancer wants to do after a long day of scans or radiation, or if in the throes of chemotherapy side effects, is answer 20 messages or have 20 different versions of the same conversation. Communicating about your cancer properly is not only time consuming, but is emotionally exhausting, especially on days when the news isn’t good.

Through blogging, Rick has found, “I’m much more in control of when, how and why I update people on my journey. I was receiving text messages and Facebook posts daily ...‘How are you feeling today? How did your appointment go? Are you having any side effects?’ Those requests have subsided since I started my blog ... most people just wait for a new post and have respected the fact that I may only update my blog once a week.”

Keeping people updated is just the tip of the iceberg when it comes to a blog’s benefit. In fact, maintaining a blog can have a profound effect on the dialogue between a patient and the individuals in his or her support system. When people have cancer, it is the tendency of those around them to make all conversation about “the cancer.” This deprives the person living with the illness of the chance to have normal conversations. If caregivers or close friends have already read the latest blog post to answer their questions and alleviate some of their concerns, their loved one can have the opportunity to not talk about cancer for a change. Or, perhaps even more importantly, the door will be open for discussion of the illness on a deeper level.

SEEKING A CONNECTION

Rick is far from alone in blogging about his cancer.

Many of those who attend workshops through Visible Ink, a writing program that is free of charge to patients at Memorial Sloan Kettering Cancer Center, maintain blogs, says Judith Kelman, the novelist and journalist who founded the group in 2008. “Blogging can be interactive without being overwhelming,” Kelman says.

Kelman learned the importance of communicating about illness at an early age.

“When I was 17, my good friend Stephen went off to his freshman year in college. Before Thanksgiving, he came home, not feeling well. The doctors couldn’t figure out what was wrong. Eventually, they recommended exploratory surgery. He became sicker and sicker, but no one would discuss his illness. No one would use the word “cancer.” It has always troubled me deeply that my friend was denied the comfort of talking about what he was going through.”

This past April, Visible Ink hosted its first blogging workshop. The turnout was a reflection of a growing phenomenon.

“We had space for 25 and 25 came,” Kelman said. “People are eager to share their stories, and that’s a good thing. My friend, Stephen, was muted — his story was never told. There was shame and stigma and silence, and that’s not good. The more people blog, the more comfortable society is with the things that people are afraid of. In this, a blog can become part of the larger conversation.”

“I very much wanted to help others navigate their cancer mazes. This is a fairly common thing after a traumatic, life-altering experience like a cancer diagnosis — this desire to reach out and try to help others.” — NANCY STORDAHL, blogger - PHOTO COURTESY OF NANCY STORDAHL“

Such was the case with Nancy Stordahl’s blog, Nancy’s Point. Unlike Rick, Stordahl did not create her blog for the sake of updating loved ones.

“I did not start my blog to inform my family and friends,” she says. “In fact, not that many of them read it then or read it now. I started my blog as a way to reach out to the larger cancer community that I knew was out there. I was looking for support, though I’m not sure I even knew that’s what I was looking for in the beginning.”

In fact, it wasn’t even her own cancer that had sparked the idea of a blog in the first place.

“I had had plans to start a blog about grief and loss, since my mother had recently died from metastatic breast cancer. Shortly after her death, I was diagnosed. Suddenly, I had a new cancer story to share — mine.”

Stordahl began to chronicle her journey, and realized her impetus for doing so was largely for the sake of connecting with others on similar paths. Although support groups are hardly a thing of the past, and direct, face-to-face contact with others certainly has its value, many of those who are affected by cancer complain that support groups often contain people with a ‘mixed bag’ of diagnoses and prognoses. The Internet has both widened the lens and narrowed the scope for those seeking a support network. Today, cancer patients and their caregivers have the ability to search the entire planet for those who share their specific diagnoses, whose experience mirrors their own.

Jessica Coyer, Psy.D., a psychologist who sits on the cancer board at South Nassau Community Hospital in Oceanside, New York, is an advocate of blogging as a strong medium of connecting.

“Blogging in a public forum provides an outlet for both the blogger and the person reading the blog. We know that support and/or therapy groups are powerful mediums for the members. They reduce the feelings of being alone, increase empathy from others, and can disseminate information to a large group at once. When someone is dealing with cancer or other chronic illness, it is critical to meet others who share his or her experience. Blogging can open up avenues to connecting people who otherwise would not have the opportunity to connect.”

Take Kaylin Andres, who was only 23 years old when she was diagnosed with Ewing sarcoma. Andres’ haunting first blog post reads like the work of someone calling out from within a void. On Aug. 17, 2008, Andres wrote, “This might be a little personal, but I feel more comfortable asking my acquaintances on (Live Journal) as opposed to some sort of mass text ... I’ve been having extremely intense pain in my left ovary since May ... tumor, cyst, ovarian cancer, mittelschmerz (ovulatory pain) ... I have no clue, but something is very obviously ‘wrong,’ and my doctor doesn’t seem to be too concerned or willing to help. Can anyone shed some light?”

Less than two weeks later, Andres was posting about her treatment plan and prognosis. She soon discovered that she was not alone.

“When I was first diagnosed, there was an amazing platform called Planet Cancer, founded by Heidi Adams, who also had Ewing’s. It was like a Myspace or Facebook exclusively for YAC’s (Young Adults with Cancer), with blogs, message boards, et al. It was such a great resource, and I met the first YACs with my particular cancer there. When chemo was too much or I feared death, I could chat with them on Planet Cancer and we would keep each other company through the dark night.”

Andres continued to chronicle her gut-wrenching story in her blog, Cancer is Hilarious, which gained such popularity that it led to the publication of her 2013 graphic novel, “Terminally Illin.’” Andres was also featured on season two of MTV’s World of Jenks, a docuseries that showcased the lives of inspirational young adults.

She died of her disease in November.

HELPING OTHERS THRIVE

On the flip side of the support coin, many who blog about their cancer experiences come to find that their writing provides a service for the cancer community, as well. You’d be hard pressed to find a cancer patient today who didn’t, when diagnosed, do a Google search for their prognosis. This, to essentially ask the million-dollar question: “Am I going to die?”

Because advancements in cancer treatment are progressing so rapidly, an Internet information quest may produce a composite of medical abstracts that could addle your brain, with depressing outdated statistics, along with a host of nearly identical “disease overview” pages. If a blog is tagged properly, it will also come up in the aforementioned Google search. What blogs offer newly diagnosed patients is the ability to follow in the footsteps of the blogger, as long as the patient’s doctor agrees it makes sense medically. Being diagnosed with cancer is like being dropped at the foot of a mountainous path at night and being told, “Climb or die.” A detailed blog, especially a current one that explains new treatment options in real time, in layman’s terms, can be a crucial trail guide.

Because cancer forces people to be more self-centered than they may be used to, many bloggers find the ability to offer assistance to others critical to their own well-being. The service piece has been a driving force behind Nancy’s Point, where, in the six years since her diagnosis, Stordahl has cultivated a deep well of both intimate musings and valuable information.

“I very much wanted to help others navigate their cancer mazes,” Stordahl says. “This is a fairly common thing after a traumatic, life-altering experience like a cancer diagnosis — this desire to reach out and try to help others.”

Rick, though only very recently diagnosed and very new to blogging, has already turned some of his attention to connecting with others in the cancer community.

“I think the most rewarding thing I’m getting from my blog are the connections to people from around the country that I otherwise wouldn’t have made,” he says. “The blog has reached a new audience, and I’ve been able to share/receive information about the various stages of cancer from others that have already walked in my footsteps. People have told me that I’ve helped them understand their own cancer stories better.”

GIVING IT A TRY

Stordahl found that she had so much to say about the way breast cancer is portrayed in the media that, in 2015, she published her memoir, “Cancer Was Not a Gift & It Did Not Make Me a Better Person.”

Not all blogs will evolve into a book, and many cancer patients may not feel comfortable putting the details of their oncology appointments or their innermost thoughts out there into the public eye. In fact, a large percentage of cancer blogs are hosted on cancer-specific sites such as CaringBridge.org and MyLifeline.org, which require readers to create accounts to protect the privacy of the blogs’ authors. Still, cancer patients might not feel confident enough in their writing to blog, even for their own support network. Others may simply prefer expressing themselves in a more abstract way such as art, or to write allegorically about a different subject matter altogether even though it may reflect on their cancer experience. But some find it worthwhile to try.

“I’ve seen a lot of writers just as intimidated by writing about this new experience as non-writers,” Kelman says. “And I’ve seen non-writers find their writing voices as the result of their diagnosis. Many patients find that they progress, personally and emotionally, through their experience with cancer, and blogging gives them a way to chronicle that growth, and to preserve their stories for posterity.”