In reading Betty Handelman’s Survivor Story yesterday, I couldn’t help but smile. The manner in which her own cancer journey led her to become a supporter to others in the area reminds me very much of a phenomenon that’s been developing over the past couple of years: The cyber cancer support network. For me, it was most obvious with my interactions with LIVESTRONG, just because as a foundation, they are one of the most successful in embracing new technology. But the online cancer network is booming – perhaps because we can go online 24/7, from any location, at any time of day, and find someone with whom to connect – or because Twitter, Facebook and other social media outlets make it easier to find like-minded individuals. I’ve been able to Skype friends while having my chemotherapy administered, I’ve been video blogging daily to YouTube and reaching friends and family with updates, and I was Tweeting within seconds of getting back to my room after my surgery.
Speaking with a local social worker at a hospital specifically trying to reach out to younger cancer fighters, it seems that in-person, support group attendance in general has been waning. They were trying to establish a blogging network to bring in the younger demographic, while trying to figure out how to encourage all cancer fighters to come in for the support groups. Of course, this isn’t meant to “grow numbers” for the sake of numbers, but to make sure that no cancer fighter feels disconnected or disenfranchised because they can’t find a group that suits them.
Personally, because I live in Northern Westchester, I struggle to connect with people at all, let alone fellow cancer fighters, or cancer fighters with similar stories or backgrounds, within or outside of my age range. I can’t help but wonder if my own addiction to the internet, social media and all things technical have stunted my ability to socialize normally. I’d love to be part of a support group like the one that Betty ran, but are they even available?
Is this a generational thing? Is it our work and family schedules that prevent so many of us from getting support? Is it our modern, anti-social tendencies that keep us tied to our Blackberries vs. making eye contact? Is it geographical limitations here in the Hudson Valley, where, too often, if you don’t live near a Metro North train station or within walking distance of the White Plains Court House, you might as well not exist?
Clearly, some understand that there is a terrible disconnect. There are amazing organizations, like the American Cancer Society, Sharsheret, a breast cancer support organization sensitive to the needs of Jewish women and their families, Immerman’s Angels, which carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel), and others, that try and connect cancer fighters with similar backgrounds with others so that they can have a cancer-buddy. However, more often than not, that buddy system is limited to distant-support, not face to face support. That’s not to begrudge the effort – what Sharsheret and Immerman’s Angels have been able to do has been fantastic – especially when helping to let a current cancer fighter see that there is someone else out there who’s been through what you’ve gone through and has made it to the other side. But I know my angel in Chicago is limited to phone calls, emails and chats. I can’t point to my chest and ask, “Did you feel that weird ache here when you rotated your arm like this, too?” She can’t offer to hold my hand while I go through my next chemotherapy appointment.
Are these online forums a suitable substitute? I know I have hundreds of supporters online as I fight my breast cancer, but even with all that, I find that I feel alone on my cancer journey. I feel like I’m miss the experience of a Betty Handelman putting her hand on mine over a cup of tea and sharing a quote from one of her scrapbooks. Sure, Betty could easily post it onto my Facebook wall, but is that enough?
What do you think?