My oncologist is great, but what I’ve received hereoutweighs what she can. Twitter is better than a drug info sheet from the pharma co.
— Xeni Jardin (@xeni) February 29, 2012
The internet’s a great place to get too much or bad info, too—but I feel better armed for today’s chemo, knowing what others experienced.
— Xeni Jardin (@xeni) February 29, 2012
The cancer vets + fellow current chemo patients I’ve met here on Twitter help me reduce my fear, replace it w/ knowledge. It’s a good thing.
— Xeni Jardin (@xeni) February 29, 2012
When I was researching an article on caring about, for and with women who’ve had abortions in late 2011, I started coming across various sources that discussed how people are using twitter for health care. Then, last December, I found an article on Jezebel about Xeni Jardin and how she was live-tweeting her first mammogram. During the live-tweet, she was diagnosed with breast cancer. I marked the article on my Safari Reading List and promised to come back to it after I finished my article on live-tweeting abortion. This morning, I came across a tweet by Maria Popova that reminded me of Xeni Jardin’s use of twitter and her current situation living with breast cancer.
Every day, I’m inspired and humbled by @xeni‘s courageous humanity. #thatisall
— Maria Popova (@brainpicker) March 6, 2012
I checked out her twitter feed and found that she has continued to tweet about her experiences. I decided to create a storify in which I archived many of these tweets. The last tweet I archived was particularly striking to me:
Twitter is my CaringBridge.
— Xeni Jardin (@xeni) March 5, 2012
Since I’m thinking a lot about cancer this week (with my mom’s birthday yesterday; she would have been 70 if she hadn’t died from pancreatic cancer in 2009), I was particularly moved by her tweets and her efforts to make some sense out of her cancer and to provide others with care.
She tweets a lot about chemo and her experiences going in for treatment. I only accompanied my mom once in her second round of chemo–the round that really ravaged her body and eventually killed her. Would she have appreciated a network of others experiencing the same thing on twitter? Probably not; she didn’t use social media much. But I think having access to more information and insight on how people experience cancer and chemo might have helped me to connect with her more in those last few years.
I think my mom might have appreciated one aspect of Xeni Jardin’s social media ethic of care, her Pinterest board. Ever since I first saw Pinterest, I thought my mom would have enjoyed it. Here’s a board that Jardin is experimenting with in the documenting of her experiences living with breast cancer.