Sunday, September 28, 2014

Looking back at a year of #gyncsm chat Today I Learned's

At the end of each #gyncsm chat, we call on participants to share closing thoughts using TIL, standing for "Today I Learned".  I really enjoyed looking back through them all and below are a selection of my favorites from this past year of monthly chats.

Want more? You can find the running list of TILs from each chat HERE.

TIL: A new way to connect and share with a community of people living with, advocating for and caring for GYN cancers! awesome! @eberrygynonc

TIL: connections in person or online can impact and empower. @joannerash

TIL: again how important it is to ask questions and be your own health advocate. @staunchstudio

TIL: We all have so much to share w/ each other and each conversation helps us all connect better @gyncsm   

Proud of the amazing conversation at #gyncsm tonight. We need to spread GOOD info on gyno cancers. #LetsDoThis. @girlmeetsgeek

that cancer is an umbrella of diseases under which we can all stand TOGETHER and support all! @chemobrainfog

TIL that there’s a website for EVERYTHING! And that I’m not alone in my clinical trials frustrations. @cookifit

TIL (again): There are so many very powerful voices working to decrease stigma and connect those in need of support. @drbeckerschutte

#gyncsm chat is a lifesaver. Its amazing to get opportunities to talk with fellow survivors & professionals freely. Thank you for this! @cookifit

TIL that there are fierce advocates for those with #cervca and that there is HOPE. @brownbeansprout

TIL how much I love the #gyncsm chats and the people it brings together. @cloudhealth

TIL: different viewpoints on clinical trials. Good to see things from a different perspective. Thanks everyone at #gyncsm! @eberrygynonc

TIL that we can learn from each other No need to re-create the wheel! BTW I used TIL as closure when I was teaching 5th grade @myelomateacher

TIL: caregiving + family issues can be as complex as the clinical issues. It's a team effort @rzeiger

Brilliant TIL: impt that clinicians recognize cancer is social dz. Stop, ask how the loved ones are doing. @gfry

cancer is hard for everyone. Patient, caregiver.Partner & children. No right or wrong. Just be a loving unit is my final thought @brcainfo

TIL: Reminded there is power in knowing you are not alone in whatever you are facing and that others are there for you. @btrfly12      

TIL continual imptce of being ur own advocate:key to survival and NEGU (never ever giving up) @jtriestm

TIL GYNCSM is a diverse body with many different and wonderful suggestions to approach the same issue. @journeycancer        

TIL that despite all SHE's facing, my wife still has love and patience when I'M upset, and maybe I should be more OK with showing it @simpson1290

TIL so happy I was able to participate tonight, you all are amazing and I'm so grateful to have this forum, take care :) @rose_mzrozee

TIL: too many to list...great advice/sharing from great people! #endcancer @natedahlpharmd

TIL - we have a huge opportunity to educate our gyn ca providers to address sexuality and fertility issues early and often @shannonwestin

Cancer needs a multi-dimensional approach with a muti-disciplinary team covering multiple issues. A challenge but can be overcome! @giasison

TIL once again, patients need to be their own health advocates. Never assume. Ask questions. Explore all options @jbbc        

"For the secret of the care of the patient is in caring for the patient." Francis Peabody <-- the whole patient @subatomicdoc    

Til - there are wonderful hcp and patients exchanging ideas and touching on topics that rarely get discussed #gyncsm thanks everyone @natricer

appreciate greatly everyone sharing an hr to educate, inform & support those with cancer. & related issues - so thrilled to peek in! @natricer

TIL important for patients and providers alike to use coping mechanisms and ask for help @shannonwestin

TIL I'm not alone in my fear of recurrence. Knowledge is power. Staying connected even after treatment is important. @intakeme

TIL: Integrated whole person care is essential in all disease communities. @drbeckerschutte

TIL: being an advocate is important. Everyone can do something & make a difference in another persons life. I will never stop doing! @brcainfo

TIL Those on #gyncsm can change the status quo. #communities are more important than ribbons... or ice buckets. @drdonsdizon      

TIL: There are so many ways to advocate for yourself and others - don't be afraid to ask questions and find the right MD for you @shannonwestin

This year I learned: people in the gyn cancer community could find each other and come together to support and educate each other @womenofteal

TIL: The best learnings come from sharings of what each & every one of us go through. And for that I'm forever grateful. @giasison

TIL: @gyncsm has been a great resource for gynecologic cancer advocacy for a solid year. Happy anniversary! @drmarkham            

Thanks for the great chat everyone! A very happy anniversary #gyncsm! Together, we can make a difference. @globeathon  

I'm excited for another year of sharing and learning with #gyncsm.
Christina Lizaso

Monday, September 22, 2014

Help Us Plan- The Gyncsm Survey

Last month Christina and I had a Google Hangout. I live in NJ and she lives in Texas. So for the past year we have been communicating strictly via e-mail.  This was the first time we talked face to face since we founded the #gyncsm chat.

We talked about celebrating the community's one year anniversary and what we could do to enhance the community experience ( more about that in October). We also discussed who participates in the monthly chat and how to increase the number of  @gyncsm followers who participate in the chat. As we began generating a list of topics to cover during our  2015 #gyncsm chats we realized that we should ask our participants what topics were important to them in 2014, what topics they liked best from 2014 and how they used the information they learned by taking part in our chats.

So over the next few weeks we developed the questions and asked our health care moderators for their input regarding which questions to use in the final 10 question survey.

During our September 10th chat Christina tweeted an invitation to fill out the survey. Twenty-two people to date have completed the survey. Thank You!

If you haven't completed the survey, please take the time today to go to the link below

and answer the questions. The survey is open to all- healthcare providers, caregivers, patients, survivors, researchers.  We are listening and your input is valuable to us as we plan future chats. Thanks again.

See you on October 8th ( 9pm EST) for our chat on Recurrence.


Friday, September 19, 2014

#hachat on Ovarian Cancer

Christina and I hosted the WEGO Health ( @wegohealth) health activists chat (#hachat) on Tuesday Sept 16, 2014. The topic of the chat was Ovarian Cancer Awareness Month. We were joined by 36 other participants for a discussion that ranged from ovarian cancer symptoms to the pelvic exam controversy to were to go for support. 

The topic questions were:

T1: Let’s start by talking generally about ovarian cancer - #ovca. What is it? What are the risks factors?

T2: Why is it important to raise awareness of ovarian cancer during September ( and year round) ? What are you doing to raise awareness?

T3A: Does every gyn cancer have a screening test? What about #ovca?
T3B: If you are an OC survivor did you experience symptoms? What were they?

T4A: There is some controversy about annual Pelvic exams. Let's discuss that a bit.
T4B: Do you think pelvic exams should continue to be used?

T5: Where can newly diagnosed women with ovarian cancer or other gyn cancer go for information and support?

You can find a transcript of the chat here. Resources shared can be found below. 

Thank you WEGO Health for the invitation to share ovarian cancer information with your community of health activists. 



Ovarian Cancer information

OC Risks/ Hereditary Cancer Risks NOCC

Statistics OCNA 

Colleen's Dream Foundation Fact Sheet OC

Symptom Diary

Ovarian Cancer Studies

Articles - Pelvic Exams 
Most Women Don’t Need Regular Pelvic Exams via @USNews 
Healthy Women Do Not Need Routine Pelvic Exams via @washingtonpost
The Dispute Over Annual Pelvic Exams via @nytimes
What You Need to Know About New Pelvic Exam Guidelines via @TodayShow 

Susan Gubar - Memoir of a Debulked Woman

OVCA Organization Twitter Accounts

Support resources

Online peer support & info-sharing sites with #ovca groups: @smart_patients @teaminspire

List of gyn cancer blogs

Survivor Stories on Gyncsm Blog