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LCSM CHAT lung cancer Social Media Twitter

This Is The Last Time

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.”

How it started

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.

Embarking on new territory!

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?

When I finally met my #LCSM family!

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!

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Categories
Friendship God

Clean Slate – Sometimes Starting Over Isn’t So Bad

SO WHAT HAD HAPPENED WAS…my iPhone locked up today. There was nothing I could do. So, if you sent me a text, replied to my last text to you or called me after 10 am, I didn’t see it and I will never see it. Ever again. I wasn’t ignoring you. So if someone professed their undying love for me I’ll never know. LOL! But, feel free to send that one again! I have lost ALL texts messages from the last year and a half. :-(  And you know sometimes you have phone numbers and addresses in those texts messages. Oops.

Anywhoo, I only have a few unchecked voicemails from April. My last back up was in March so any pictures I took after that back-up…gone. I sure hope I downloaded the ones I took in Nashville! I know I didn’t download the ones of me and De Renee and friends from the last week or so…so I guess we need to take some more. Bryant Carter, um, can you send me some of the pics you took last week, please sir? IMG_0002

Anyway, if in the last few months you sent me pics of your lovely kids and family via text message, I no longer have them. I feel empty. And if I sent you some pics that I took, can you send them back to me, just in case? But all is not lost. Good thing is that I do still have most of my contacts and they are slowing coming back. But if you happen to send me a text message and you get a reply from me that says “who’s this?”…don’t get offended. I still love you, even if I don’t know who you are. LOL!

I ended up going to the Apple Store (after lots of lengthy phone calls with Apple support) and they got me back on track free of charge. We didn’t want to do a factory reset, but it was necessary and it was better than having to get a new phone. They think because my storage was full (always) and some apps were trying to update and one or two of the apps were probably corrupt, my phone just said “I give up”…and shut down. For good. They don’t recommend backing up my phone from my last back up, because there could be something that would shut my phone down again. So I needed a clean slate.

But here’s what’s funny…kinda. Just this morning I said “God, help me remove anything from my life that is unnecessary because right now I feel overwhelmed.” I guess God said “Ok, got it!” LOL! Because right now, I truly don’t know what else is missing from my phone…so I guess I didn’t need it?? Hmmm…

Anyway, I know this was long…but moral of this story: Don’t ever think that God doesn’t answer prayers. You just need to be specific! LOL!

UPDATE: Thanks Derita for sending the above photo of us from one of your many “going away” events! Yay!