Abstract

Keywords: Support groups, online patient communities, e-patients, cancer, lung cancer, internet, survivors.
Citation: Loew B, Novack J. A skydiver jumps, and an online community exults. J Participat Med. 2011 Sept 19; 3:e43.
Published: September 19, 2011.
Competing Interests: Brian Loew is CEO of Inspire and John Novack is Inspire’s director of communications.
 

The term “bucket list” appears regularly in the online patient support communities of our company, Inspire. Members of our cancer and rare disease support groups, not surprisingly, discuss making such lists and acting on them.

A recent posting in our Lung Cancer Survivors Support Community caught our attention for a few reasons, not the least of which was that our member Patricia Gale Flowers, 52, from Port Arthur, Texas, went skydiving:

It was great, and the best part is that I feel like such a ‘bad ass!’ I went with my son Patrick and nine of his friends. Yes, I got a little nervous, but not afraid. I have Stage 4 lung cancer — why should I be afraid of anything? The video and pictures are great and make me laugh out loud. I am more amazed watching it than I was doing it. Got a little nauseated and the harness hurt my femurs a little. I can’t wait to tell Dr. Kim next week at my checkup. I think I will print a picture for him. Maybe he will hang it in his office and see me and know I am still living the good life and NOT ready to give up. Please, no one let depression get them down.

Upon returning from a checkup at her doctor’s, Flowers wrote:

[The doctor] loved my picture skydiving. He said a lot of patients talk about it but none have done it except for ME!!! Next check up he will see me zip lining in Alaska. I am going to try not to overthink the future and enjoy my life even if it is three months at a time.

What really struck us even beyond Flowers’ wonderful story were reactions from fellow support group members. Here’s a small sampling:

• “I took airplane flying lessons once, and would love to do it again, and go for a license, but too chicken these days, but, you know, just maybe?”
• “What a morale booster you are! Here I was worried about a 7-hour drive to the Jersey Shore next month! You sure knocked that fear out of my head!”
• “Your wonderful attitude is exactly what I need to regain for myself. Thanks for reminding me that I was once like you … full of spunk and courage … learned to fly a Cessna when I was 17. Maybe enough of your wonderful saga will push me up the hill … so keep your stories coming! I need you, and the gutsy courage and ‘can-do’ attitude that you share with us.”
• “What an awesome attitude. This gave me new strength to get through this. I read it to my husband (who has cancer) and he really smiled for the first time in weeks. Thanks for pushing us and making us realize that there are things to live for.”

We contacted Flowers to ask her reaction to how her online community members responded. “It amazes me,” she said, “that it can make a difference to someone who doesn’t even know you, to motivate someone to do something. To see the reaction to what I wrote, it made me feel really good.”

Certainly the relatives and friends of those members have urged them to create and live out a “bucket list,” no matter how modest. Yet Flowers, who does not know the real names of most of the members on her community, and has not spoken to them or met them, got through.

Flowers thinks her words connected with her peers because of the common bond of cancer. “Family and friends say, ‘I know how you feel, I know how you feel,’ but no one knows how I feel except for those people I talk to on (the lung cancer support group),” she explained. “They’re the only ones who could possibly know how I feel. You can have compassion but until you’re told you have Stage 4 lung cancer, well, it’s like we’re an elite group, and no one other than us knows how we feel. The good times and bad, it’s there the rest of our lives. It’s just a life changer. I live in a small town. I know the big towns have support places you can go to, so going online was my support, to find other people like me.”

It wasn’t Flowers’ intention to convince her peers online to jump out of planes to fulfill a bucket list. “I’m just telling my story,” she said. We think she also got some others’ lists started.

Copyright: © 2011 Brian Loew and John Novack. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.