Saturday, January 18, 2020

Sharing the Best of Cancer Communities on Twitter


Earlier this month I traveled to Houston, invited to speak at the NRG Oncology Semi-Annual Meeting during a Social Media Workshop.


I was a bit nervous but also excited to share with oncologists and other cancer professionals: what is community, how cancer hashtags were developed, how cancer communities were founded on Twitter, the benefits of cancer communities and how we can learn what patients need from these communities.

Did you know that most Twitter cancer communities were founded by patients and that many of their moderators are oncologists? Did you know that many of these communities hold regular chats?
Did you know that both #bcsm and #gyncsm have had papers published based on their community members needs and support they find in these communities.
  • #bcsm published Twitter Social Community is an Effective Tool for Breast Cancer Patient Education and Support: Patient -Reported Outcomes by Survey  (https://www.jmir.org/2015/7/e188/) in the Journal of Medical Internet Research in 2015 and concluded that patients perceived knowledge increased and anxiety decreased after participation in a Twitter Social Media support group. 
  • #gyncsm published in the Journal of Patient Centered Research and Reviews in an article titled, The Needs of Women Treated for Ovarian Cancer: Results from a #gyncsm Tweet Chat (https://digitalrepository.aurorahealthcare.org/jpcrr/vol5/iss2/3/) . Authors found that women felt more vulnerable and had increased emotional concerns after treatment ended while during treatment women were more concerned about side effects and physical concerns during treatment. 

I finished up my talk with these comments/recommendations.


I hope that more oncologists and patients will participate in these communities - we have so much to learn from each other.

I want to than NRG Oncology ( @NRGonc),  Dr T. Julian ( @TBJulianMD) and Dr Becca Previs (@BeccaPrevisMD) for the opportunity to share my knowledge of Twitter Cancer Communities with you.


Dee
Every Day is a Blessing!

Thursday, January 2, 2020

Beginning a New Decade


Welcome to 2020!

I wish all my readers a very Happy and Healthy New Year.

At the start of every year I always find it amazing that I am still here. In 2005 when I was diagnosed with stage 3 ovarian cancer I really wasn't sure I would make it to 2007 yet here I am. It may sound cliche but I feel very blessed.

As many of you know I do not make New Year Resolutions. Instead I make a list of things I aspire to do during the upcoming year.

In last year's list I wrote: 
  • I aspire to consistently attend yoga class.
I signed up for a yoga class at a local studio called One Yoga and a friend who was training to be a yoga instructor ( she just got certified) also invited me to her house for a few sessions. I found taking yoga was beneficial to me - better breathing, less stress and much better posture. I wish that I had started it sooner. The owner of the yoga studio I attend shared her message for 2020 and in it she said to be open to good energy, focus on the positive and keep what is good. Pretty good advice I would say .

What else do I aspire to do in 2020?  When I looked over last year's list I see a few things that have been on my list for  many years. I'll just keep them here and keep trying to make them happen.
    • I aspire to continue to support women diagnosed with ovarian cancer through this blog and the  #gyncsm  community, to share my story as an ovarian cancer survivor and to promote ovarian cancer research. (I have had this aspiration for 5+ years)
    • I aspire to travel to Maine in 2019.  ( This has been on my list since 2016. But I'll keep trying .)
    • I aspire to build an even better bond with my dog Amber so we can improve our work at the masters level in agility. (This one has also been on my list for years and as long as we have fun doing agility it will stay here.) 
    • I aspire to go kayaking.
    • I aspire to spend more time doing watercolor paintings. I tried pastels, it was one of the things I aspired to last year, and enjoyed it but I am going to change this one up a bit. This year I will concentrate my watercolor painting. My son and daughter-in-law gave me water color brushes for Christmas so I am psyched to give them a try.
    • I aspire to step away from social media for a period of time each week and make connections in person - call or visit. MaryAnne, Florence and Linda I promise to reach out soon. 

    What do you aspire to do in 2019?

    Dee
    Every Day is a Blessing!