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Facebook group helped with cancer support, mourning

A cancer-stricken man and his wife find a sense of community online to keep friends and family informed of his progress.

May 27, 2012|By L.J. Williamson, Special to the Los Angeles Times
  • David Spancer
David Spancer (Dave Le, Dave Le )

Apryl Lundsten was, in her own words, "not a good Facebook user."

"Facebook made me uncomfortable. I'd post something, and somebody would answer, and I'd be like, 'Oh, my God, do I have to answer them?' I just had performance anxiety. I didn't see the benefit."

Then, in February 2011, her husband, David Spancer, a Web producer, was diagnosed with a serious illness. A friend created a Facebook group for Apryl to use to keep family and friends informed. The group's name: David Spancer's Got Cancer.

The group became a lifeline for Apryl and David, who lived in Eagle Rock — a source of comfort and connection during a painful and frightening time. As David's condition became all-consuming, with days upon days given over to doctors' appointments, chemotherapy, fatigue and sickness, Apryl and David had little time to benefit from the companionship of friends when they needed it most. That's where social media came in.

Initially, Apryl saw the group simply as a timesaver. In the first days of David's diagnosis of colon cancer, she'd been overwhelmed by the number of concerned emails and text messages that poured in from friends and family. Responding to everyone would have been a full-time job, so Apryl began using the group to send updates on David's condition — as did David, when he was feeling well. But over time, the group became something far greater than a series of progress reports — it became critical to Apryl and David's emotional well being as well as that of their social network — even though there were a few unforeseen complexities.

Karen North, director of USC's Annenberg Program on Online Communities, says that the practice of using online community tools to connect deeply with friends and family is on the rise. "People are engaging their loved ones for important life events including struggling with the challenges of an illness, sharing relationships and weddings, engaging others in the upbringing of their children — showing pictures, telling stories, asking for advice or support, and more." Though Facebook has been criticized as a font of useless narcissism, this type of helpful sharing often feels very personal, especially if the creator includes pictures, videos and audio as well as text, North says.

Apryl says of her early efforts to document David's daily experience: "I thought, 'Nobody's going to find this interesting, but I'm going to do this because I know at least two people are interested." But Apryl began hearing from people who went to Facebook every day, sometimes several times, just to check David's page.

David's mother was one of these, and she went from an infrequent social media user to a devotee. "I ended up seeing how absolutely fantastic it could be," said Cookie Spancer. "To watch people who didn't know each other from different generations and different parts of the country find that they had things in common was fascinating."

Apryl, who has worked as a journalist, began to feel a duty to report on David's cancer in the way a journalist would — and that duty became a source of solace. Often, she would post before bed each night, which became a comfortable routine during a time with few comforts or routines. The feedback was immediate, with replies often coming in seconds. "We weren't seeing people in person, but we were constantly able to go to the site and have supportive words, or stories, or things people thought we would be interested in."

Since David had several comedy writer friends, gallows humor and no-holds-barred jokes about the indignities of invasive medical procedures were a staple feature of the group's content, side by side with descriptions of the hope, anguish and hardship of daily life as a cancer patient.

The group quickly swelled to more than 300 members, with friends, co-workers from David's job at ABC, family near the couple's home and in more far-flung locations gathering for daily news of David's condition. Then more were invited to join the group — people who had relatives or friends of friends with cancer. "They thought that these people would find some comfort out of it," Apryl says.

That was one point at which things grew briefly uncomfortable — having the details of his illness aired on the Internet not only to loved ones but also to strangers. For a time it got to be too much for David, with the tangled Venn diagrams creating circles noGoogle+user would ever think to overlap. At one point, David culled everyone with whom he wasn't personally acquainted and changed the membership to invitation only.

The group's magnetism was as much because of Apryl's skills as a writer as to David's particular hunger for seizing every possible opportunity to laugh at his situation. After David learned that his cancer was terminal, he wrote a David Letterman-style list of "Things I'm Not Going To Miss When I'm Dead." Included: "94.7 The Wave. Cheese Nips. Liverwurst. Ziggy. Florida. The Metric System."

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