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

https://www.oncolink.org/support/sexuality-fertility/sexuality/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

http://womenofteal.blogspot.com/2017/12/chemo-induced-peripheral-neuropathy.html