Showing posts with label one on one support. Show all posts
Showing posts with label one on one support. Show all posts

Wednesday, September 12, 2018

September Chat : We Need Support, Where Do We Find It? and Digital Health Fair

This month we decided to hold a chat and digital health fair around the topic of Support for gynecologic cancer patients. We started with a few topic questions about what support gynecologic  cancer patients need and then our health fair began. Organizations that support gynecologic cancer patients were invited to share a few tweets about the organizations and services they provide. Thank you Cancer and Careers, Cancer Hope Network, Clearity Foundation, Elixir Fund, FORCE, Helpsy, IamCervivor, OCRFA, Proactive Genes, SHARE, SPBOC Foundation, Smart Patients, Support Connection and WhatNext for making our first Digital/Virtual Health Fair such a success.

 We were pleased that 61 people participated in this chat with 2.7 million impressions and 658 tweets. You may learn more analytics here.

 Some responses to our topic questions include:
T1: What are the types of support patients need at diagnosis, during treatment and after? What is most important for you, your loved one or those you support?
  • At first I see a big need to not feel alone. Also a competing desire to learn all you can but also not wanting to overwhelm yourself.
  • As many facets as there are in our lives, each of them requires support as cancer touches everything.
  • I wished I had someone to navigate and to research for me when first diagnosed. I've been that person to many others. I needed a "me" for me.
  • Knowledge is power here. Patients are in need of education and supportive resources
  • Support that includes caregivers and family members so they can better support their loved one.
T2: For emotional support, do you attend in-person groups, online groups, one-on-one? Why or why not?
  • A combination of support is helpful for different needs.
  • There is a benefit to each type of support program and it depends on the person's personality what they're comfortable with. Many orgs, incl. us, offer a variety of support programs so that people can find the best fit.
  • online Facebook group only. Once a month at hospital hasn't been convenient.
  • All of them. Talking to a person who has gone through it gives you different support than taking part in in-person groups.

Then we moved on to our Digital Health Fair.  

 Here are a few tweets from each participating organization. You may find and follow each organization on Twitter or on the internet.  Please refer to the transcript for additional tweets and information from each participant. 

Cancer and Careers

Cancer Hope Network


Clearity Foundation


Elixir Fund 




FORCE

Helpsy



IamCervivor



OCRFA




Proactive Genes
SHARE



SBPOC



Smart Patients


Support Connection

 WhatNext 


We also celebrated our 5th anniversary as a chat and Twitter community.



 Remember if you are a patient or caregiver you may continue this discussion on the Smart Patients Platform ( https://www.smartpatients.com/gyncsm ). 

 Join us next month on October 10, 2018 at 9pm when we chat about Managing Cancer Pain. 

 See you then, 

 Dee

Posted by at No comments:
Labels: , , , , , ,

Saturday, September 8, 2018

Sept. 12, 2018 Chat: We Need Support , Where Do We Find It?



This month, on Wednesday, September 12th at 9:00pm ET, the #GYNcsm community will be hosting our first ever "digital health fair" in conjunction with our chat topic We Need Support, Where Do We Find It?. We will begin the chat with a few questions about the needs of women and caregivers diagnosed with a gynecologic cancer and what resources they have found helpful, then our "digital health fair" will begin. The organizations taking part will share a few tweets on the services they provide and participants can ask questions.

To date the following groups will be joining us:

Cancer Hope Network

Imerman Angels

Smart Patients

SHARE

Cervivor

Helpsy Health

Elixir Fund

OCRFA

FORCE

         Cancer and Careers

What Next 

If you are an organization that supports women diagnosed or at risk for a gynecologic cancer and would like to participate in our chat please tweet/DM to @gyncsm your interest in participating or e-mail us at gyncsm@gmail.com so we can add you to our list.

We are also excited that this month is our 5th Anniversary as a Twitter Community. We would not have been able to continue our mission to support those whose lives have been impacted by a gyn cancer without all your help. Our sincerest Thank You!



See you on the 12th!

Dee and Christina 
Co-founders #gyncsm 

Posted by at No comments:
Labels: , , , , ,

Wednesday, August 13, 2014

Where To Go For Support- August 2014 Chat

Tonight our topic was "Where to Go For Support". Support is needed for many aspects of a cancer patients life - educational support, financial support, physical support and emotional support. The support can take many forms - support groups, transportation services,  inspirational stories,  meals, peer to peer support and much more.  We were pleased to have Dr Matthew Katz, Dr Emily Berry and Dr Shannon Westin join us as our healthcare moderators. Thank you to all those who shared their sources of support.

The topic questions were:


T1: Let’s start off with - What types of support are needed at diagnosis, during treatment and after?

T2: On the practical support side - Where do you go for help with transportation, cleaning the house, insurance issues, work, etc?
T3A: Let’s discuss emotional support.  Do U attend in person groups, online groups, one-on-one? Why or why not?
T3B: How did you learn about those groups/organizations? What are other sources of emotional support?
T3C: Healthcare professionals - where do you find emotional support re: your work in the cancer field?

T4: What advice would you give to a woman who is not “Connected” - are there magazines / articles / books you could recommend?

T5: We’ve discussed types of support - if you could improve the support you currently get what would it be?


If you missed the chat the complete transcript can be found here. The analytics of the chat can be found here.

Our next chat is "Advocating for Yourself and Others". We will also be celebrating the anniversary of our first chat. Please join us on Wednesday September 10, 2014 at 9pm EST (6 PCT) to learn from other gyn cancer advocates.


Resources:

Online Services to Coordinate Support:
@caringbridge 
@lotsahelping 
@mylifelineorg
@rallyhood

Help with Insurance and Health Care Access:
http://www.patientadvocate.org/resources.php

Travel:
Angel Flight http://www.angelflight.com/

House cleaning:
Clean 4 a Reason @clean4areason

Work issues:
Cancer and Career @cancerandcareer  http://www.cancerandcareers.org/en

Patient Caregiver Wish List:
Elixir Fund @elixirfund

Help with health hardships and needs:
Med Gift @MedGift http://www.medgift.com/
Give Forward http://www.giveforward.com/

Gynecologic Cancer Organizations:
http://peachoutreach.com/ Peach Outreach (Endometrial Cancer)
@GYNCancer Foundation for Womens Cancer
@tandherfrenz Tamika and Friends -Cervical Cancer
@StopHPVCancer National Cervical Cancer Coalition http://www.nccc-online.org/index.php
@NOCC_National National Ovarian Cancer Coalition 
@OCNA Ovarian Cancer National Alliance
@OCRF Ovarian Cancer Research Fund
@prim_peritoneal Martha C Kinnecom Primary Peritoneal Cancer Foundation
@hystersisters Hyster Sisters Hysterectomy Support http://www.hystersisters.com/


Organizations that offer Support to Cancer Patients/ Survivors:
Cancer Support Community@CancerSupportCm
Tower Cancer Foundation (Los Angeles County) http://www.towercancerfoundation.org/for-patients/cancer-helpline
Gildas Club http://www.gildasclubchicago.org/
Road to Recovery- @AmericanCancer
LiveSTRONG @Livestrong
Cancer Care @CancerCare
Stupid Cancer (Young Adults)@StupidCancer
Patient Navigator Programs
http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Patient-and-Family-Support/Patient-Navigator-Program.aspx
Stand Up 2 Cancer  http://www.standup2cancer.org/

Peer Support:
Cancer Hope Network @CancerHopeNet http://www.cancerhopenetwork.org/
Imerman Angels http://www.imermanangels.org/

Online Support groups:
@smart_patients Smart Patients
@teaminspire Inspire

Books / Magazines:
Not Your Mother's Hysterectomy http://notyourmothershysterectomy.com/
Dr John Lee's books on menopause & cancer (http://www.johnleemd.com/store/main_books.html)

The Light Within by Lois M. Ramondetta (http://www.harpercollins.com/9780061732690/the-light-within)
Byron Katie - Loving What Is (http://www.thework.com/byronkatie.php)
Love, Medicine and Miracles by Bernie Siegel (http://berniesiegelmd.com/products-page/holistic-healing/love-medicine-miracles-lessons-learned-about-self-healing-from-a-surgeons-experience-with-exceptional-patients/)
Life Over Cancer by Dr. Block (http://www.lifeovercancer.com/)

@COPING_cancer Coping Magazine 
@AWomansHealth Womans Health 
@cure_magazine Cure Magazine 
@CancerTodayMag Cancer Today Magazine 

Other Resources:
Perceived threat and PTSD symptoms in women undergoing surgery for gynecologic cancer or benign conditions. 
http://www.ncbi.nlm.nih.gov/pubmed/20878863

Online courses to improve Quality of life
https://reimagine.me/

Crowdfunding for Medical Care
https://reimagine.me/magazine/love-relationships/crowdfunding-my-cancer-treatment.html

Starbrydge Health
http://starbrydge.com/

Medicine X Conference  http://medicinex.stanford.edu/
MedX Global Access http://medicinex.stanford.edu/2014-global-access-program/

"For the secret of the care of the patient is in caring for the patient" Francis Peabody


Dee
Co-moderator of #Gyncsm
Posted by at No comments:
Labels: , , , , , ,
Subscribe to: Posts (Atom)