World Cancer Day: Honoring My Online Patient Community
Today is World Cancer Day, and my thoughts turn to my relationships with other lung cancer survivors. How does one meet other people dealing with the same disease you have? It’s not easy. Doctors and nurses are bound by confidentiality regulations, so they can’t introduce us to each other. I live in thinly populated northern New York, so there aren’t many people in my situation near me. There aren’t support groups near me, indeed there don’t seem to be many support groups for lung cancer anywhere. The joke is that organizers can’t keep the groups together because the participants keep dying.
When I needed to find others who really, really understand, I turned to the Internet. Lung cancer patients have built friendly, lively, and supportive communities online. We friend each other on Facebook, we follow each other on Twitter, we find out about each other’s blogs and read them. We have organized Twitter chats where we trade information and thoughts with patients, medical professionals, and advocates. A handful of people who are very generous with their time have built a website, lcsmchat.com, that pulls us together. We also meet on patient support forums and websites like inspire.com, smartpatients.com, and cancergrace.org.
I will inevitably leave someone off my list of people with whom I have an online relationship that is important to me, but here are some people who give me strength and make me smile:
Janet. She is everywhere, posting information on research and patient empowerment on all of the online communities that I frequent, flying hither and yon to do presentations, organizing Twitter chats and other group projects. Her blog is the first lung cancer blog I followed. Besides being a retired engineer, she is also a science fiction writer.
Linnea. She has an artist’s eye and posts the most marvelous links on Facebook, from the mysteries of nature to high fashion. She has been living with lung cancer for 11 years, and has participated in three phase 1 clinical trials, where she has been one of the first people in the world to take a new drug. That is bravery.
Craig. He has the same mutation I have, and was in a clinical trial for the newly approved Tagrisso, a drug that may be my next line of therapy. He’s currently in a rough patch, beating back new progression with chemo and trying to line up his next clinical trial. He gives great blog, filled with honesty and humor.
Celia. She is in the same clinical trial that I am in, and about to celebrate two years of stability. Once a month she blogs about her treatment with great humor. She’s also a retired engineer, so her blog is strong on facts. She has reached out to many on the inspire.com forums with information and tactful empathy.
Denise. She is another longer term survivor of lung cancer who is very well informed and generous in reaching out to others with information and treatment ideas on the patient support forums. She has a big heart and lots of good ideas. She suggested today’s blogging activity by several lung cancer bloggers on this theme.
Neal. She’s a new online friend with a very entertaining blog. She’s also learning how to knit!
Tori. One of the first blogs I found, she’s a mother of young children going through a second major cancer in her lifetime. She also wields humor skillfully, and is very open about the emotional side of what her cancer means to her loving family. She and her husband recently opened the Pointless Brewery and Theater in Ann Arbor, MI, and I was glad to be a backer of their Kickstarter campaign.
Nancy. I met her on SmartPatients.com. She and her husband ended an idyllic retirement in the midst of her illness to make a new home for their daughter and grandchildren. She also deals with a long-term autoimmune disease on top of her lung cancer. We spent a few hours together enjoying lunch and a long chat this summer, and we are looking forward to seeing each other again in a few months at the National Hope Summit.
Deana. She is @FacesofLungCancer on Twitter, and is a pioneer in using the Internet to pull everyone involved with lung cancer together to create the community we have today. She is tireless and skilled and warm.
Naomi and Kelli, the two people I interviewed in November 2015. We shared much with each other as we created the interviews together, and I’m deeply grateful to them both for being so open to me.
Then there are the people I interact with on inspire.com’s forums. Judy, who is an encyclopedia of knowledge and bracingly candid, answering questions posed by everyone who posts. Louise, who posts fun videos and snarky e-cards to cheer us up, and also reaches out to others with the deepest empathy I’ve ever witnessed. Kate, whose husband was in the same trial I’m in for a while.
It takes courage to reach out (and a device that connects to the Internet), but more and more of us are doing so and discovering that we are not alone. The information we share with each other is valuable, and the friendship we share is priceless, and our community has no borders.
#WorldCancerDay #lcsmchat #lcsm