#LCSM

#LCSM Chat topic 11/16: Running on Empty—Advocacy and Burnout

It’s Lung Cancer Awareness Month, when lung cancer patient advocates knock themselves out sharing information and factoids about their disease.  However, you know you spend too much time as a cancer patient/advocate when …

  • You think you see a cancer ribbon on your driveway, which upon closer inspection is actually a drowned earthworm.
  • Most of your travel revolves around cancer.
  • You lecture strangers on the street about lung cancer stigma.
  • You know enough people who have died to easily post one per day for a month.

As research develops more effective cancer treatments , the number of cancer patient advocates and survivors (including those living with metastatic cancer) is growing.  Some of us have been at it for years.  We feel an urgency to promote awareness, educate patients and carers about treatments, share our experiences, and obtain more research funding so we can help save lives of current and future patients, and perhaps even our own.  We can’t stop, because we don’t want to see cancer claim another life and devastate another family.

And yet, there is a limit to our energies and abilities. We advocates are human, and in some cases humans in active grieving or cancer treatment.  Much as we would like to be superhuman, cancer patient advocates can’t do everything.

Sometimes we become overwhelmed (or even depressed) by the magnitude of the task ahead of us, by our seeming inability to accelerate research or save every cancer patient we encounter. Sometimes we must fend off anger directed at us by those in pain, while still maintaining compassion. Sometimes our health suffers from the stress and long hours.  Sometimes we wonder whether we’re truly enjoying our limited time on earth. Sometimes all this make us less effective as advocates–it’s hard to give good energy to others when your own cup is empty.

Sometimes we just need to take a break from cancer patient advocacy to recharge.

On November 16, 2017, at 8 PM New York Time (5 PM Seattle time), our #LCSM community will explore this issue in an hour-long chat titled “Running on Empty—Advocacy and Burnout.”  Moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following questions:

  • T1: What do you do as a cancer patient advocate, and how long have you been doing it? (Note: a cancer patient advocate can be anyone who advocates for cancer patients).
  • T2: What events or situations in your advocacy work have caused you the most stress and/or distress? How do you cope with them in real time?
  • T3: Have you ever considered quitting your advocacy work? If you continued your patient advocacy work after that point, what persuaded you to continue?
  • T4: What steps have you taken to help you recharge your advocacy energies? If you take took a break from advocacy, how long was the break and what did you do during the break?
  • T5: Based on your experiences as a cancer patient advocate, what advice would you offer to those who are considering becoming cancer patient advocates to ease their way?

This is the first chat in which tweets can be 280 characters–make good use of them!  Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. Hope you’ll join us!

#LCSM Chat Topic 11/2: What Was Your Favorite #LCSM Chat, and Why?

We are excited to kick off Lung Cancer Awareness Month with an awesome topic. The next #LCSM Tweet Chat on Thursday, November 2nd at 5 PM Pacific/ 8 PM Eastern is “What Was Your Favorite #LCSM Chat, and Why?” The moderator for this chat is Dr. David Tom Cooke (@DavidCookeMD)

From July 25, 2013, our inaugural Chat, to September 7, 2017, we have hosted 102 Tweet Chats. Using Symplur Signals (Symplur LLC, Los Angeles, CA) we were able to do a deep dive into the analytics of those chats. During those 102 chats, there were 58,010 total tweets, 5,595 participants, and 183 million impressions. The majority of folks who participated in the chats were identified as patients (23%), with doctors and healthcare providers making up 21% and caregiver/advocates 11% (Figure).

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The top chat for patients based on the percentage of participants was June 1, 2017, “Community Grief-Dealing with our Cumulative Losses” (45%). For caregivers/advocates the top chat was December 4, 2014 “CMS Lung Cancer Screening Rules: Overboard, or On the Mark?” (20%). Finally, for doctors/healthcare providers the top chat was September 17, 2015, “Surgery or Radiation for Early Staged, Operable Lung Cancer: Which Road Should I Take?” (62%).

On Thursday, November 2nd, we hope to learn what moves our wonderful #LCSM tribe; which chats motivated you the most to take time out of your busy day (or evening!), to stick your toe into and contribute to the conversation?

To assist with the conversation, a complete list of #LCSM Tweet Chats can be found here. With the above goals, here are questions that will be discussed during our November 2nd Tweet Chat:

T1 What was your favorite #LCSM Tweet Chat, and Why?

T2 Patients participated most in “Comm Grief-Dealing w/ our Cumulative Losses”. Why would that chat resonate the most? #LCSM

T3 Caregivers/Advocates participated most “@CMSGov #LungCancer Screening Rules”. Would this still be the biggest advocate focus? #LCSM

T4 Docs participated most “#Surgery/Radiation Early Staged #LungCancer: Which Road?” Is there an understanding gap in #LCSM for early stage?

T5 Which chat, if any, missed the mark? Why? #LCSM

T6 Moving forward, what Chat Topic do we need to pursue? #LCSM

Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. Hope you’ll join us!

#LCSM Chat Topic 10/19: World Conference on Lung Cancer (#WCLC2017) Wrap-Up

Please join the #LCSM community and moderator Brendon Stiles  (@BrendonStilesMD) for the next #LCSM Chat on Thursday, October 19th, at 8 pm Eastern Time (5 pm Pacific).  The topic of the chat will be “World Conference on Lung Cancer 2017 Wrap-Up.”

The annual World Conference on Lung Cancer, known on Twitter this year as #WCLC2017, is the world’s largest meeting dedicated to lung cancer.  Hosted by the International Association for the Study of Lung Cancer (@IASLC), the conference is taking place from October 15-18th in Yokohama, Japan.  The conference’s motto, “Synergy to Conquer Lung Cancer” is an accurate description of how it strives to bring together healthcare professionals, scientists, industry partners, and health advocacy groups for a unique opportunity to exchange information and forge future collaborations to improve the outlook for patients with lung cancer.

In this chat we hope to cover some of the highlights from the just-completed conference and get the unique perspective of some of the people who attended the meeting in Japan.  Our discussion topics will be:

  • T1:  Why is the annual World Conference on Lung Cancer such an important meeting?
  • T2:  What is the role of patients and advocates at this meeting?
  • T3:  What is new in cancer screening and early stage lung cancer?
  • T4:  What is new in advanced disease and medical oncology?
  • T5:  Were there any exciting new areas of translational research that show particular promise for patients with lung cancer?

We would love to have you join us for this #LCSM Chat focused on #WCLC2017.  The meeting covered practically all aspects of lung cancer, so should be of interest to everyone in the #LCSM community. Please join us this Thursday and please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.

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