Friday, March 29, 2019

Aren't We All "Women Rowing North" - a Book Review

A few weeks ago, I ran across a book online whose title peaked my interest. I added it to my Goodreads list and put a hold on the book at my local library. Last week I picked it up from the library and read it in 5 days. Women Rowing North - Navigating Life's Currents and Flourishing As We Age by Mary Pipher focuses on women who are older but as I read it I found parts that also can apply to women who are facing any challenge - a cancer diagnosis, the loss of a child, divorce etc.

After reading a few chapters I started keeping track of advice and quotes that touched something in my heart and mind. Here are my favorites:

"with age we experience less anger and anxiety. I suspect that can not be because we have less tragedy but rather because we have better coping skills."

"We can feel helpless at times…However we can move toward acceptance and resilience.Our tragedies can teach us to trust and connect us to others."

"Friendship is really not a noun but a verb. Relationships of any kind require attention, energy and time"

"Activism is complicated. …All Activists need to set limits or we can become exhausted and burned out."

 "Women can find ways to be connected and useful"

"grandmothering is complicated. Grandmothering requires great diplomatic skills and self-discipline."

"The culture shapes us and we shape it. As our bodies grow old we must find new ways to stay engaged and empowered. … Let’s push out into the current and row."


In the past almost 14 years as an ovarian cancer survivor I have found that cancer changed me. I have grown , learned and engaged with others. This book has something to offer women in every walk of life and I highly recommend it. 

Dee
Every Day is a Blessing!
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Wednesday, March 20, 2019

SGO meeting Tuesday

Here are the top tweets from the SGO meeting on Tuesday!  

Treating the Whole Patient
Patient Perspective on Clinical Trials


 Maintenance Olaparib


GAS6 and chemoresistance

Immunotherapy



Cisplatin/Gemzar/Pembrolizumab

Next year's meeting is in Toronto. And the gavel has passed to Dr Huh!

Thank you to  @KMKoerten , @Stigetta, @DeannaTeoh , @drcarolbrownMSK , @SGO_org, @DDNewsOnline, @BPothuri for tweeting from the meeting!


Dee
Every Day is a Blessing!

Tuesday, March 19, 2019

SGO Annual Meeting - Sunday/ Monday

Delayed but here are some important tweets from the SGO meeting on Sunday and Monday.


Risk Reducing Salpingectomy and QOL


 Phase 1 Levantinib and weekly taxol in recurrent OC
PARP and ARID1A

JAVELIN  - Avelumab+peg liposomal doxorubicin VS peg liposomal doxorubicin

Phase 2 Pembro and Bev

Minorities and clinical trials

OC Patient Preferences - maintenance therapy

CCNE1 and BRD4 Expression and platinum resistance

 Thank you @KMKoerten , @DKhabeleMD, @ShannonWestin, @Stigetta, @SW_MedReporter, @StephASullivan, @StephanieVBlank for posting from the meeting!


Dee
Every Day is a Blessing! 

Sunday, March 17, 2019

SGO Annual Meeting - Saturday 3/16

Saturday SGO Meeting:

I wish I had been able to hear the SGO Presidential speech by Dr. Agnes Binagwaho (@agnesbinagwaho) .



Financial Toxicity



Genetic Testing
PARP Inhibitors


Cancer Disparity

Leadership - Dr Parkham Zambia


Thank you Yvette WilliamsBrown (@MYvetteWB), Ali Saiz, MD (@AllisonSaizMD), Shannon Westin (@ShannonWestin), Ross Harrison (@RossFH), Erin Stevens (@erinstevensmd), BJ Rimel (@BJRimelMD) and Annie Ellis (@Stigetta) for taking the time to tweet from the meeting.

Dee
Every Day is a Blessing!

Saturday, March 16, 2019

SGO 2019 Annual Meeting Friday - OC Heros



The SGO is meeting this year in Honolulu, Hawaii to celebrate it's 50th Anniversary. I will be following along from NJ via Twitter and the #SGOmtg and #SGOHawaii50 hashtags.  I plan to blog each day of the meeting ( March 16-19) the tweets I find of interest to my followers.

On Friday the members started to arrive and there were a number of preliminary workshops as well a survivors course presented by the Foundation for Womens Cancer.

Friday night's activity included the OC Heros Awards presentation and dinner. The guest speaker was Shannon Miller and the award winners were  Ryan Mitstifier-Walton, Nurse Paula Anastasia and Dr. Shannon Weston. I am so pleased to see Dr Weston win this award. She has been an amazing health care moderator of the #gyncsm community.





Thanks Annie Ellis and Dr Erin Stevens for the great Tweets!

Dee
Every Day is a Blessing!

Monday, February 25, 2019

Rare Disease Day 2019



February 28th is Rare Disease Day® .  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.
 
In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children.
Do you know which diseases are considered rare diseases by the NIH's Office of Rare Diseases Research? The following ovarian cancers are considered rare:


To learn more about any of those ovarian cancers just click on the name above. 

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the NationalOrganization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.
 



 If you are on social media and have a rare disease you can use this template and show your stripes on this Thursday , February 28th. 

My stripes are rare. I have _____, a #raredisease. #ShowYourStripes #RareDiseaseDay {upload photo of yourself}

I'll be sharing this blog post as a way to raise awareness. 

Dee
Every Day is a Blessing!

Wednesday, February 20, 2019

Let's Chat- A 2019 Guide to Tweet Chats

In 2013,  I wrote a two-part series called A Guide to Twitter and Tweetchat Part I   and Now Let's Chat - A Guide to Twitter and Tweet Chat Part II. I recently updated Part I ( A 2019 Guide to Twitter) and thought it would be beneficial to others if I updated the post on how to chat as well. As moderator of the #gyncsm chat I have used #gyncsm as the chat example.

What is a Tweetchat?
A Tweetchat is a virtual gathering of people discussing a particular subject. Using a unique hashtag helps identify the tweets that belong to the discussion. If you join the #gyncsm community for one of their chats ( 2nd Wed of the month at 9pm ET) you will add the hashtag #gyncsm to each tweet. The conversation happens in real time and can take place at a fast pace.
The first time I joined the #BCSM (breast cancer social media) chat back in 2013, I searched for #bscm on twitter and followed along. I wrote some tweets but I forgot to use the hashtag twice and had to type in the tweets again with #bcsm . It was a bit of a challenge remembering and following along with the questions and comments. You can continue to join a chat by searching for  a hashtag ( such as #gyncsm) in the Twitter search box which brings you to the #gyncsm page . If you hit latest in the menu on the top of the page , your screen will show you the stream of tweets that include #gyncsm at that time. It will update as new tweets are posted using that hashtag.

Tweet Chat Tools
Since the #gyncsm chat began in 2013 I have had a chance to not only research tools which make it easier to participate in chats but have been able to test them out under real-life Chat conditions.The sites automatically add the hashtag to each tweet you write. In no particular order here are a few that will make participating in a chat easier.
 TweetChat (http://tweetchat.com/).
All you  have to do is go to the site, sign in with your Twitter account and enter #gyncsm in the “Enter a hashtag to start” box. When the page opens you will see a box at the top of the page where you enter your tweet. The #gyncsm hashtag is automatically added to your tweet.


Below this box you will see all the tweets in the chat room. You can set the rate at which the chat window refreshes, stop and start the stream and change the "room" settings. Of course you can also Tweet, reply to, retweet and like a Tweet all from one page.  

Tchat.io ( http://www.tchat.io/) .



Once you sign in with your Twitter account and enter #gyncsm in the box next to "start Chatting" the chat page will look similar to the Tweeetchat page. A box on top of the page allows you to enter text to tweet and automatically adds the hashtag. You can hide retweets and pause the stream too.


 Below this box will be all the recent tweets which you can reply to, retweet, quote and like a Tweet.

TweetDeck (http://tweetdeck.com/)

As a moderator, TweetDeck is one of my favorite to use. Once you sign in you will be able to set up columns of information - Home, User, Notifications, Message, Followers etc.  I set mine up to show #gyncsm, my stream, my notifications, followers and messages. During a chat I usually have my New Tweet column open all the time.



When you want to use TweetDeck for a chat you can add a column ( look for the + on the left ) and choose search. In the search box on the top type in #gyncsm. (This is the column to the right of the New Tweet column in the photo above.) When you hit reply in a Tweet that tweet will appear in the blue column and you can reply below it. When you hit retweet a new window opens and you can simply retweet to your followers or click on retweet with comment. This allows you to add text. If you start a new text you will have to add the hashtag being used during the chat (#gyncsm ). I like the ability to easily add a photo to the tweet as well as schedule a tweet.

I recommend that you don’t wait till the night of the chat to sign up for these tools but test them out a day or two ahead of time. Even if the hashtag stream is not busy you can still try out different aspects of the site.

So what happens on a #gyncsm chat night?
The #gyncsm chat takes place on the second Wednesday of the month at 9pm EST. Our first chat occurred on September 11, 2013. A few minutes before the 9pm EST start time sign in to Tweetchat or the site you prefer. You will see that some of us have already tweeted using the hashtag to remind our followers to join us. The #gyncsm hashtag and other cancer communities like #bcsm, #lcsm are used all the time not just during chat time to share information of interest to our respective communities. 

The  #gyncsm Chat Format
Introductions  (9:00-9:10 pm EST)
All moderators will introduce themselves. We will then ask those who feel comfortable doing so to introduce themselves. Don’t worry if you feel like just “eavesdropping” on the conversation that is OK. You can always tweet us (@gyncsm)  or tweet a simple " statement such as "#gyncsm I'm listening"or e-mail us (gyncsm@gmail.com) with questions/comments after the chat is over.

Questions/ Discussion (9:11- 9:49pm ET) 
Each chat will have a specific discussion topic.  The moderators and our guests will be prepared to share links that relate to our night’s topic. The discussion will revolve around 4-5  questions regarding the night’s topic. As we post each topic /question everyone is invited to comment. We ask that you be sure to use T1,T2, T3... in your reply so that we know which question  you are responding to. When we have special guests (authors, advocates, researchers or social workers) join us for a chat the format may be modified for those occasions. During many chats we ask participants to please  refrain from asking questions about your own personal health issues.  Rather jot those questions down and call or speak to your doctor at your next visit. 

Summary /Closing Remarks (9:50- 10:00pm)
During this time we will ask you to share what you learned by using TIL- "Today I Learned "in the tweet. We will also remind you of the date, time and topic of our next chat. 

Chat Tips
Here are some things to keep in mind if you are new to chats:
  • You may use 280 characters per tweet.
  • The pace may be quick at times with participants commenting but please don’t be discouraged. You can scroll back in the conversation to catch up. For most health related chats transcripts are available on the communities website ( gyncsm.blogspot.com for gyncsm) or on the Symplur website. (https://www.symplur.com/healthcare-hashtags/gyncsm/) 
  •  Please try to stay on topic. Side conversations are distracting and will make a crowded discussion more difficult to follow.
  • Try to keep retweets to a minimum so that the discussion can flow smoothly. 
  • The chat is not the place to promote your project / book / event/ fundraiser. We know you are all doing wonderful things please feel free to share with all after the chat is completed.
  • Be mindful that although we may all be dealing with a gynecologic cancer,  the experiences we have may not be  the same.  Please do not criticize another person's treatment decision.


We hope you will let us and other chat moderators know if there is anything we can do to make our chat's better.

A special thank you to the ladies of #bcsm for being a model of  how a successful chat is run.

Dee