Showing posts with label emotional support. Show all posts
Showing posts with label emotional support. Show all posts

Wednesday, 12 September 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

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Saturday, 8 September 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

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 

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Wednesday, 12 July 2017

What's on your Mind? #gyncsm Open Mic Night -July 12, 2017


We didn't have a set series of topic questions for this month's chat but rather allowed our participants to share what was on their minds. We had nineteen participants and over 1.4M impressions. You may find more analytics from Symplur here.

The hour's discussion revolved around these main areas:

Emotional support of women after treatment
  • I'm struggling in post treatment life. Unknowns, grief, plus effects from chemo, rads. :/
  • Post-treatment is really tough for so many people. It's tough to go from the intensity of treatment to the uncertainty of after. 
A petition to make July Sarcoma Awareness Month which led to a discussion of - What is sarcoma? Which are gynecologic?

    • Via @suziesiegel Sarcoma is a cancer of connective tissues. The main types of gyn sarcoma are leiomyosarcoma ,low- & high-grade endometrial stromal sarcoma, & undifferentiated uterine sarcoma. Some include carcinosarcoma
    • Risk factors include exposure to radiation & use of Tamoxifen, plus genetic issues such as Li-Fraumeni Syndrome

    Educating the public about the importance of HPV vaccination
    • Caleb's Feet Foundation http://www.calebsfeetfoundation.org/ brings information about cervical cancer and the HPV vaccination to the community. 
    • studies show pediatricians have a huge influence on whether kids get vaccinated - parents do listen to doc rec
    • good to focus on doc's and then community influencers - churches, centers
    • The @GlobalGenes site has some amazing free toolkits for health advocates. Can also check out blogs from @JBBC re: health marketing 
    • HPV vaccination could reduce global deaths from #cervicalcancer by as much as two-thirds
    Support for women cancer researchers 
    • I really want to (1 day) discuss the lack of funding 4 female researchers, tasked w/ post BrCa Dx research
    • Issues affecting women's health still does receive equitable share in research dollars. It's time that changes
    • Awarding rates 4 female applicants (14.9%) are systematically lower than those for male applicants (17.7%) 
    The science behind the connection between genetic mutations (other than BRCA) and how they may raise the risk of  Breast, Ovarian Color Cancer 
    • I'm in a FB group for CHEK2 and many previvors reporting getting ovaries out though science isn't there yet on that.
    • CHEK2 is the name of a gene...when there is an inherited change (mutation) in CHEK2 = some increased risk for specific cancers
    • Risks to removing ovaries in these young women-->early menopause w/o known cancer risk reduction benefit

    You may find the complete chat transcript here.

    Please scroll down for Resources mentioned during the chat.

    Remember you can always join our discussion on the Smart Patients Platform. (https://www.smartpatients.com/partners/gyncsm )

    Be sure to join us next month on Wednesday August 9, 2017 at 9pm ET | 8pmCT | 6pmPT  as we discuss "You never heard of Primary Peritoneal Cancer or GTDisease?".

    Remember to tweet things of interest to our community by using the #gyncsm hashtag.

    See you in August!

    Dee
    #gyncsm Co-founder

    RESOURCES:

    Petition to make July Sarcoma Awareness Month
    https://petitions.whitehouse.gov/petition/officially-designate-july-sarcoma-awareness-month

    Calebs Feet Foundation
    http://www.calebsfeetfoundation.org/

    Magenta Study Genetic testing study at MD Anderson
    https://magenta.mdanderson.org/magenta_mobile/index.html

    Sex Bias in Surgical Research
    http://www.physiciansweekly.com/sex-bias-in-surgical-research/

    @nccn guidelines for "Hereditary Colorectal Cancer"
    https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=294

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    Wednesday, 10 May 2017

    May 10,2017 Womanhood, Femininity and Cancer

    This month the #gyncsm community discussed how cancer-related diagnoses affect a women's perception of her femininity and womanhood.

    We were happy to welcome some new participants as well as catch up with our regulars. We had 29 participants and over 1.5 million impressions. You may find a transcript of our chat here and additional analytics here.

    The following are the topics questions along with some responses. Resources shared during the chat are listed at the end of the post.

    T1: Growing up, what did womanhood and femininity mean for you? How did you relate to these ideas?

    • Womanhood / femininity = watching mom makeup high heels pretty clothes
    • I always liked girly things, but never felt limited as a girl. Math/science were always my favorite. But love a good lipstick!
    • city grandma gave me etiquette books - farm grandma led by example could do anything man could. I was tomboy
    • I was never a traditionally"girly" girl--largely because I associated being a girl with being limited/different rules 

    T2: How do patients and loved ones react when they learn female organs (ovaries, tubes, uterus, cervix, etc) may need to be removed?

    • It seems to vary from person to person...some women "want everything out/I don't need these organs" to preferring no/minimal surgery 
    • Even though I was in my late 40's when dx . It saddened me to loose what had nurtured my 2 children
    • I know that I have worked with clients who struggle with losing body parts that are so identified as "female."
    •  I'm more concerned with being around for my kids, but I certainly feel the weight of what body change may mean.

    T3: How concerned were you with ideas of womanhood, femininity, and body image as you started treatment? Do patients bring this up?

    •  I was surprised to see so little written outside of the breast cancer space on the topic if femininity and cancer...
    • The very large scar - now that bothered me for a long time. Bothered me more than loosing my hair
    • "Treatment" is so nebulous - always wondering when next shoe will drop.
    • although my husband and I had decided not to have more children, I struggled that the option was taken away from me 

    T4: In what ways has your diagnosis impacted your relationships, sexuality and your image as a women? Where do you seek support? 

    • The Hystersisters group has some resources and community for those thrown into menopause.
    • @cancerLGBT http://cancer-network.org/ has good resources including related to HPV, ovarian in lesbian, bi-sexual and transgender
    • I always hope that people facing these choices are getting good mental health support.  

    T5: What are some pelvic health resources for those impacted by cancer-related diagnoses?

    • Good resource for some with pelvic radiotherapy side effects, or concerns of them http://www.prda.org.uk/
    • Pelvic physical therapy is something I've only head about recently.
    • Biofeedback PT is commonly used for pelvic floor therapy after childbirth. Impt to find a specially trained therapist
    • one resource is

    Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/gyncsm.  

    We hope you will join us on Wednesday June 14, 2017 at 9:00pmEST as we discuss Radiation Oncology - What is it? When is it used? 

    Remember to please tweet things of interest to our community using the #gyncsm hashtag between chats.

    See you soon.

    Dee

    #gyncsm Co-founder


    RESOURCES
    "Altered Sexuality and Body Image after Gynecological Cancer Treatment: How Can Psychologists Help?"
    "Gender Identity Issues in Online Early-stage Gynecological Patient Discussions"
    http://marketeching.com/gender-identity-issues-online-early-stage-gynecological-patient-discussions/

    "Quality of life and psychosocial adjustment in gynecologic cancer survivors" https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-1-33

    "Psychosocial adjustment in gynecologic cancer survivors:longitudinal study risk factors for maladjustment"
    http://www.cancernetwork.com/oncology-journal/how-can-we-effectively-address-medical-and-psychological-concerns-survivors-pelvic-malignancies

    "Assault on our Womanhood"
    http://www.dailymail.co.uk/health/article-440358/Assault-womanhood.html

    Susan Gubar's "Living With Cancer" articles touch on femininity-related issues:
    https://www.nytimes.com/column/living-with-cancer

    "A Letter To My Gynecologist"
    http://www.ihavelynchsyndrome.org/letter-gynecologist/#

    Blog post | "Redefining Womanhood:. A look back at 365 days cancer free…"
    http://www.girlmeetsgeek.com/2014/05/28/redefining-womanhood/

    "Cancer Treatment and Pelvic Health" By Elizabeth E. Houser, MD
    http://awomanshealth.com/cancer-treatment-and-pelvic-health/

    "How Can We Effectively Address the Medical and Psychological Concerns of Survivors of Pelvic Malignancies?"
    http://www.cancernetwork.com/oncology-journal/how-can-we-effectively-address-medical-and-psychological-concerns-survivors-pelvic-malignancies

    “I Feel Different”: Ovarian Cancer and Sexual Self-Concept “Women's reproductive health”
    http://www.tandfonline.com/doi/abs/10.1080/23293691.2017.1276371?scroll=top&needAccess=true&journalCode=uwrh20

    Video: "Ask The Doctor: Physically I feel good, but I feel sad."
    http://www.hystersisters.com/vb2/videoshow.php?vid=514

    "Post-treatment sexual adjustment following cervical and endometrial cancer"
    http://onlinelibrary.wiley.com/doi/10.1002/pon.639/full

    "Sexuality after gynaecological cancer: A review of the material, intrapsychic, and discursive aspects of treatment on women's sexual-wellbeing"
    http://www.maturitas.org/article/S0378-5122(11)00212-X/abstract

    "Tackling the Impact of Ovarian Cancer"
    http://www.nursinginpractice.com/article/tackling-psychological-impact-ovarian-cancer
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    Supplements / Vitamins Are they helpful? May 8, 2019 Chat

    We were pleased to have Stacy Kennedy MPH,RD (@stacykennedyrd) join us for this informative chat on vitamins and supplements.  You may find ...