THE FIRST TIME
I remember when I first received the instant message on my Twitter account on February 25, 2013: “Want to start grassroots effort 2 get lung cancer info out 2 public. Would appreciate if u would retweet whatever u like from my account. Thx!” I was floored AND excited! Someone wanted ME to work on a grassroots lung cancer campaign?! Hell yeah! I mean, I didn’t know what it meant, but I wasn’t working a job at the time and back then my life revolved around learning as much as I could about lung cancer and healthcare discrepancies. I was still so very raw emotionally from mom’s death just 9 months prior. So I replied, “Oh most definitely! That’s easy! I truly believe that not enough lawmakers or execs have been affected personally.”
Thus began the start of a 10+ year friendship with Deana Hendrickson, fondly known back then as Faces of Lung Cancer/Lung Cancer Faces. I didn’t know her personally except in the social media world of lung cancer. She too was hurting from losing her mom to lung cancer and she was using all of her time trying to advocate for more awareness about lung cancer because clearly, NO ONE cared about lung cancer nor the patients or families affected by the #1 cancer killer in the U.S.
It would be six months after that before the first LCSM Chat was born and the LCSM hashtag would ultimately change the landscape of how lung cancer information was disseminated. It’s hard to believe that the first chat occurred on July 1, 2013. And, here were are, eight years later, about to close the final chapter on the LCSM Chat. Today’s chat, December 2, 2021, will be the last one. The hashtag will live on of course because so much has been written about the importance of how four letters with a hashtag in front of it (also known as the “number sign”, the “pound sign”, or an “octothorpe”) influenced the way we learned about lung cancer and cancer care in general.
HOW IT HAPPENED
I have always found it fascinating that the LCSM Social Media founders created something so monumental without having ever met each other in person, at least at the beginning. I lived in Alabama, and the others lived on the West Coast, between California and Washington state. It just goes to show you that when a group of people are passionate about something as important as lung cancer patients, neither distance nor unfamiliarity can get in the way.
As the popularity of the chat and the hashtag began to grow, so did my need for a full-time job. For those who don’t know, I had quit my job in 2011 to help take care of my mom. But eventually, after her death in May 2012, it was time to get back to work. I found myself changing my professional career direction, going from college sports administration to non-profit administration to clinical trials coordination. During these changes, I also had two part-time jobs, one job at Cost Plus World Market and the other job at my church as a receptionist for the church and the on-site adult day care. Somewhere in between I was also volunteering for the Cancer Center at St. Vincent’s East. Because my life circumstances changed, I had less time to devote to the chat. Unfortunately, I had to make the hard decision to step down from the original group that was responsible for planning and organizing the chats. But, I was never far away.
Why am I sharing all of this? Well, I think it’s important to know how four tiny letters had such a major impact on my life and the lives of others. #LCSM was and still is more than a simple letters. The chat that resulted from the hashtag changed so many lives in so many positive ways. I learned so much about lung cancer surgery options, and the next steps one should take after being diagnosed with lung cancer.
I learned the difference between the different stages of cancer and when lung cancer is considered inoperable and when radiation and/or chemo is advisable. I now understand how environmental factors also play a major role in the diagnosis of lung cancer (RADON!) and how lonely most lung cancer patients feel after diagnosis.
The LCSM chat was more than just a social media activity on a Thursday night…it was a major movement in the lung cancer community. This movement will have a lasting impact in the cancer world, and it will continue to live on far beyond the physical chats. Don’t believe how significant these chats were? Check out the important topics that have been covered over the years: The Cost of Cancer Drugs; Biopsies and Tissue Collection; Challenges in Low Dose CT Screening; Surgery or Radiation?; Doctor Shopping in the Age of Social Media; Immunotherapy: What Patients Need to Know; Covid-19 and Lung Cancer; Expanding Access to Clinical Trials. All of our chats were open to everyone and it wasn’t always just about lung cancer. LCSM Chat partnered with #cancerchat for The Basics of Biomarker Testing and Finding Balance: Cancer Live vs. Real Life.
Thank you to 1000s of individuals who participated in the chats over these years, who asked questions, shared their stories and shared lung cancer information within their circles. I have met so many awesome people, especially those who were diagnosed with lung cancer who have since left us to carry on their fight. Lung Cancer Social Media (#LCSM) the hashtag and the “family”, isn’t going anywhere. Continue to use the hashtag to cultivate and share information. Don’t let the absence of the LCSM Chats stop you from learning and sharing. Besides, if we don’t do it, who will?
If the #LCSM chat had any influence on your life, if even for a day, please join us for this final chat, December 2, 2021, 7 pm cst/8 pm est. Hope to see you there!
optimism and me 