Social Media and Cancer

(This is an old picture. I’ll try to get something of my new haircut soon!)

Sadly, I have to admit that my phone is never too far from my hand.  It can definitely be a big distraction from real life, but it can also be a very powerful tool.  More than once, my mom has called me on a Monday morning to tell me that an acquaintance passed away over the weekend.  She was incredulous that I already knew. From Facebook. (In this case, the word Facebook must be read with an evil, raspy voice.) To be sure, there are people who share things they shouldn’t online. But I quickly found that, when used appropriately, the internet could make my life much easier when it came to my cancer.

  • Helping Hands: My friends set up a Helping Hands site that was wonderful. It let us set up a calendar where we could add tasks that I could use help with– dinners and play dates were my main needs. Other friends have also added things like rides to treatment or help running errands. Somehow, it made it easier for me to ask for help, knowing that people had the freedom to sign up to help or not– there was no pressure.  The Helping Hands site also had a place for a journal, which is where this blog began. Friends and family could check in every once in a while, or they could sign up to receive emails anytime I posted something new.  (You can subscribe to new posts on this site, too, by signing up at the box on the right.) There are other similar sites– CaringBridge has a journal but no calendar sign ups, and yes, there’s an app for that. StandWith is in its final stages of development, and will let you push specificrequests to certain groups of people (maybe rides to treatment to close friends, meal requests to acquaintances).
  • Facebook: As much as my mom hated that I found out about someone’s death on Facebook before she told me, the truth is, it was shared by someone who had the right to share. Facebook is a great way to connect with family and friends, sharing information with lots of people in a single click. It gives them a place to respond without feeling like they’re bothering anyone. I always made it a point to post a picture of myself on chemo day to let people know that I was doing ok.  It wasn’t a sad place, and I may have been plugged into a machine delivering poison to my body, but I was smiling and enjoying some kid-free time with a friend.  Now I use my Run | Lipstick | Chemo facebook page to share new blog posts and other cancer related stuff.
  • Twitter: Yep, I’m on twitter now. A twitter friend (I’d give credit, but I don’t remember who deserves it!) said it best: Facebook is for the people who love you, Twitter is for the people who understand you. I do interact with some real-life family and friends on twitter, but most of my interactions are with people with whom I share a common interest, but who I’ll probably never meet. I’ve made some great connections on twitter with others who’ve gone through breast cancer and some of the most caring care providers. Getting involved in the #bcsm (breast cancer social media) group has given me new perspectives, new friends, new things to think about. And it’s a wonderful feeling to walk into a conference venue with hundreds of people, knowing that while you haven’t met them in person (yet), you have friends in the room.
  • Instagram: Nope. Maybe some day, but I’m just not there. Plus my high school girls tell me that parents should not have Instagram. So I guess I’l steer clear for now, I’m not risking my “cool mom” status with those girls!
  • Blogging: This blog started as part of the Helping Hands site, and it was a way for me to disseminate accurate information quickly and easily. I chose to keep my Helping Hands site was private, one of the administrators had to approve anyone who wanted to be part of the community. This blog is a whole different story. I still like the idea of the control the blog gives me– there’s no reason for anyone to hear third-hand what’s going on with my health and get things entirely wrong because the story has been passed around so many times. But the more public forum of a wordpress blog, while sacrificing some privacy, helps me reach out to a much larger breast cancer community.  I hope that my story might help someone.  I hope that maybe someone will read my words and have a new perspective, a new question for her doctor, a new way to help her friend.  But it wouldn’t be honest to say that writing this blog is entirely altruistic. Writing helps me.  The people I’ve met, hearing their stories, sharing their successes, it all helps me.

We definitely have to be careful about the information that we share online and on social media.  And after talking at length about nipples, it may be a hard sell to tell you that there are things that I edit, things I keep out of this blog. I don’t share everything, but I strive for honesty in my voice. I share what I would want to know, the things I’ve looked for, coming up empty. I try to remember that anyone can see my words, my images– something that I remind those high school girls about all the time. (They’re probably tired of hearing how I nixed one potential babysitter because she was holding a red solo cup in her profile pic!)  But at the same time I worry that anyone can see my posts, I am in awe of the fact that anyone can see my posts. Anyone. Anyone who just heard her doctor tell her that she has breast cancer.  Anyone who is worried how her kids will react to her hair loss from chemo. Anyone who wonders what it’s like to get a nipple tattoo or to grow out her hair post chemo.  I do try to remember to put down my phone for a while each day and just engage with the people around me.  But I’m so thankful for the tools that connect me with so many people– with friends I know in real life, with people with whom I’ve only shared stories on a screen, with anyone.

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