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