#gyncsm - A Gynecologic Cancer Community on Twitter

In January this year I wrote a post titled "New Years Aspirations" for the SGO Blog page. The post  listed what I aspired to do in 2013. One of those aspirations was to help set up and participate in a regular tweet chat for gynecologic cancer survivors. I have taken part in a number of #bcsm (breast cancer social media) chats and thought it would be helpful to have a chat for women with gynecologic cancers.

In early July, I read an ASCO Connection article, "Hashtag Folksonomy for Cancer Communities on Twitter" by Matthew S. Katz, MD.  Dr Katz, who also participates in #bcsm, was thinking along the same lines I was in January. In the article, he speaks about developing a hashtag nomenclature for building online cancer communities and for sharing information and news. I recommend reading that article and the comments provided by advocates and health care professionals to learn more. You might also be interested in reading Hashtags:High Time or Half-baked.

Over the past few days I have been a part of an interesting conversation among a number individuals 
( @womenofteal @SGOChrissy @drdonsdizon @subatomicdoc @DrMarkham @journeycancer @colleen_young @btrfly12  @tamikafelder @LurieCancer ) interested in developing a community for those diagnosed with gynecologic cancers.I am excited to announce that we are moving forward with a gynecologic cancer community on Twitter.  @btrfly12 has set up a twitter account for @gyncsm and the hashtag  #gyncsm ( gynecologic cancer social media) will be used for the online community of gynecologic cancers including cervical, endometrial, ovarian, primary peritoneal uterine, vulvar, and vaginal. There is still work to do regarding moderators, topics, date, time etc. so the start date for the Tweet chat is not yet finalized. If you are on Twitter be sure to follow @gyncsm for more information.  I will post additional information on this blog also.

Social media like Twitter is wonderful for sharing experiences, news and other information but there are drawbacks. Things posted on Twitter are public so there may be women who will refrain from participating due to a lack of privacy. Also a single tweet is 140 characters so at times it may be difficult to convey a complex topic but posting links may allow sharing of this type of information. I feel in the long run that the benefits will outweigh the negatives an I look forward to the first chat.


Dee
Every Day is a Blessing!

HopeNet Social Network to be Discontinued- 1/1/12

As many of you know I volunteer with the Cancer Hope Network and speak to other ovarian cancer survivors throughout the country. For the past year I have also been the moderator of the trial online service of Cancer Hope Network known as HopeNet Social Network's Gynecologic Cancer Survivors and Supporters group. I recently e-mailed this message to members of the group.

Hello Gynecologic Cancer Survivors and Supporters Group,

Thank you so much for being part of this group. As you may have heard Cancer Hope Network’s social network, HopeNet, will be shutting down Feb 1^st 2012.

This service was begun as a trial to increase awareness and knowledge of Cancer Hope Network's core service: one-on-one matching with another cancer survivor. Analysis of the site’s usage and quantity of membership indicate it is not achieving results consistent with what we hope to achieve in our mission and vision. Therefore, the decision has been made to discontinue this aspect of Cancer Hope Network's web services. Please note, the web site is still completely active – only the HopeNet tab will be deactivated.

If you would like to stay in touch with Cancer Hope Network, please join them on Facebook or follow themon Twitter. Also, if at any point you would like to be able to speak one-on-one with a fellow cancer survivor, please contact Cancer Hope Network by email atinfo@cancerhopenetwork.org or phone at 877-HOPNET (877-467-3638) and they can try to match you with one of their support volunteers.

It has been a pleasure getting to know so many of you. You may contact me through my Blog, Women of Teal( womenofteal.blogspot.com).If you are interested in online groups you may want to join Inspire (www.inspire.com) or the ovarian cancer mailing list at ACOR (http://www.acor.org/) . I have been a member of both these groups for five years now and found them very helpful.

May the New Year bring you good health and happiness.

Wishing you all the best,

Dee

Dee

Every Day is a blessing!