Wednesday, December 13, 2017

December 13, 2017: I've Survived - Dealing with Side Effects and Other Losses

This month, during our chat I've Survived - Dealing with Side Effects and Other Losses, we discussed physical and emotional losses experienced by gynecologic cancer patients and survivors.




We were pleased to welcome a number of new participants among the 26 people who joined us.  You may find our analytics here and a transcript here.

Below are the questions Christina used to guide our discussion along with some sample answers. Please read the complete transcript for all the comments.

T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 
  • When I think of losses I think friends lost to OC, the organs that allowed me to have my children, my ability to recall words quickly.
  • T1 loss of control, loss of carefree living, loss of ability to assume things are ok even if it’s a false assumption
  • T1: For me, it's the faces of ovarian cancer survivors I have worked with over the years who are no longer here to advocate.
  • Cancer is a string of losses - of many kinds, so of course, there is lots of grieving as well. How could there not be?
T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.
  • T2 Physically- organs: repro, vagina, bladder, portions of sm & lg intestine, left kidney, nephrosis of rt kidney, gall bladder, thyroid,
  • T2 Feeling the toes in my left foot, My thick hair ( after losing it twice it is thin) 
  • T2 whatever physical losses, care team must take seriously their effects on function and quality of life 
  • And it seems that physical losses tend to change how we see ourselves socially, emotionally...
T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 
  • When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge
  • T3 A year after my recurrence I lost 4 friends from my support group. I was devastated, guilty, and scared of recurrence. Speaking to the Social worker helped. She gave coping skills.
  • T3- Yes. I have helped women as mentor locally and distance & have spoken at multiple services. Having been diagnosed as 'terminal' this has impacted me terribly, major SURVIVOR'S GUILT!!!
T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 
  • It’s mind-blowing that many doctors avoid talking about fertility & sexual health. We are all adults. There’s no room for stigma, taboos. Patients need answers to pressing questions & reali life concerns.
  • T4- Intimacy does NOT require being physical. Have not had 'sex' in 7+ years. But this does not mean we've not been intimate. Be adventurous. Find joy in the simplest things, a soft touch, kissing, etc. If done properly, partners can find MORE INTIMACY without sex.
  • T4: Even for the tough things, good to know there are lots of resources out there when you are ready. Being open to talking about it first step..
  • many of my brca+ friends who've had ooph talk about painful intercourse/vaginal dryness and feeling a loss of sexuality. Luckily they've worked with their providers to overcome those hurdles
T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 
  • All of them.
  • T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss.
  • T5: The goal is to have more cancer survivors, but we have to plan for how to support them as well.
  • Also more scientific research to bring therapies from bench to bedside.
  • T5: I'd also love to see more research surrounding getting ahead of neuropathy. Chemo nurses have tips but nothing universal
Please scroll down to see a list of Resources shared during the chat. 

You may continue to discuss these questions with us on the Smart Patient Platform (https://www.smartpatients.com/partners/gyncsm). 

Mark your calendar for our first chat of 2018 on January 10th.  We will discuss Caregivers - their needs and wants with guest Lauren Hand, Gynecologic Oncology Fellow, Magee-Womens Hospital of UPMC.

We wish everyone Happy Holidays! See you in 2018!



Dee and Christina
Founders #gyncsm

RESOURCES

Nancy's Point There Will Be Tears at Christmas http://nancyspoint.com/will-tears-christmas/

Cancer rehabilitation @cancerDotNet https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/rehabilitation

Renewing Intimacy & Sexuality after Gynecologic Cancer   http://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

Women's Guide to Sexuality During & After Cancer Treatment

@cancdotnet Managing menopause and side effects from treatment 
https://www.cancer.net/blog/2016-08/survivorship-after-gynecologic-cancer-managing-menopause-and-treatment-side-effects

In Shock  by Rana Awdish (book)

Society for Participatory Medicine @S4PM (organization)

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

Friday, December 8, 2017

December '17 Chat: I've Survived - Dealing with Side Effects and Other Losses


On various social media platforms we have heard women diagnosed with gynecologic cancers discuss the difficulties they have after diagnosis. They ask: When will I feel less tired? When will my hair grow back? When will the numbness in my hands and toes stop? When will I feel comfortable being intimate? Or they will share that they feel sad because they are unable to have children or because the friend they made during chemo has passed away. And others ask why they feel so isolated when all around them family and friends are happily celebrating the holidays. 

We will discuss these physical and emotional losses during this month's #gyncsm chat, I've Survived - Dealing with Side Effects and Other Losses on Wednesday, December 13, 2017 at 9pm ET. We welcome all those impacted by gyn cancer, wherever you are in your experience, along with previvors, caregivers, loved ones, advocates, healthcare professionals and those impacted by other cancers and serious illness.

We will use the following questions to guide our discussion:
T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 

T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.

T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 

T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 

T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 

We look forward to you joining us at 9pm ET on Wednesday, December 13th. 

Dee
#gyncsm Co-founder