Showing posts with label care. Show all posts
Showing posts with label care. Show all posts

Friday, January 6, 2023

Survivorship - January 11, 2023

#gyncsm community tweet chat - Survivorship - Wednesday, January 11, 2023 8pmET | 7pmCT | 5pmPT - Gynecologic Cancer Social Media - www.gyncsm.blogspot.com


The #gyncsm community will start out 2023 with a chat about survivorship. We hope you can join us at 8pm ET (7pm CT, 5pm PT) on Wednesday, January 11, 2023.

The NCI definition of survivorship states:

In cancer, survivorship focuses on the health and well-being of a person with cancer from the time of diagnosis until the end of life. This includes the physical, mental, emotional, social, and financial effects of cancer that begin at diagnosis and continue through treatment and beyond. The survivorship experience also includes issues related to follow-up care (including regular health and wellness checkups), late effects of treatment, cancer recurrence, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.

We will examine the needs and support at different stages of survivorship - initial diagnosis, during treatment, as well as care after treatment ends. 

T1: What comes to mind when you hear the term "survivorship"?

T2: Do you seek out survivorship stories? What do you find helpful about patient stories?

T3: Which effects of survivorship - i.e. physical, emotional, social and financial - have impacted your life most?

T4: What are some of the types of support patients need at diagnosis, during treatment, and after? What tools or support have helped you with your survivorship?

T5: Do you experience a fear of recurrence? If so, what do you find helpful when dealing with that feeling?

T6: Do you ever feel survivors' guilt? How have you dealt with that?

T7: What has been your experience with follow-up and long-term care? After initial treatment, did you receive a survivorship plan? If so, how has it helped you during your survivorship?

Join us as we share organizations and resources to help you have the best survivorship possible.

See you on Wednesday, January 11th, at 8pm ET.

Dee and Christina

Wednesday, February 11, 2015

Care Beyond Medical Care- February 11, 2015 chat

We were so pleased to have Reimagine (@reimagine_me) with us for this month's Care Beyond Care Chat. Reimagine (https://reimagine.me/) helps people thrive following a cancer diagnosis through skills training, community, a magazine & an "online university".  Sophia Kercher (@sophiakercher), editor at @Reimagine_ME's magazine and Cindy Finch (@5thstepofcancer ), clinical therapist, instructor and writer at Reimagine also joined the chat.

Forty-four participants tweeted 534 Tweets in the hour. Additional analytics can be found here and the chat transcript can be found here

These questions guided our discussion:


T1: Many patients feel they lose control of their life while in treatment. What can help? What did you do to take control? 


T2: Did you pamper yourself while in treatment? What did you do? What did others do for you? Tips for those in treatment now? 


T3A: Dealing with a gyn cancer can cause stress. What things do you find helpful in reducing stress? What are some resources?
T3B. Did you ever feel pressured to be "happy" and "positive" ? How did you respond to people who said you needed to be.


T4: Feeling sad & experiencing depression is common for survivors. What helps you deal w/these feelings? Did you bring up w/ doctor?

Please scroll down for a list of resources shared during our chat. 

Remember that patients & caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/dFCf1Mcahw .

Mark your calendar for next month's chat No One Ever Told Me... on Wednesday, March 11, 2015 at 9pm EST.  See you then. 

Dee
Co-moderator

RESOURCES:

"A problem with how we treat cancer -- and how to fix it” by Cindy Finch http://t.co/liNCREyWKe

Reimagine Resources:
Reduce your Stress with Meditation: https://t.co/zjp3QcwvMo
9 Reasons to Meditate:https://t.co/j5iTIm9VNB
Finding a New Normal with Cancer: https://t.co/i6Yp2Qp3yS
Why Self Care Isn't Self Indulgent:https://t.co/d8D746W4CA
5 Tips for Taking Care of Yourself When You're a Caregiver:https://t.co/VmL4qnqgX2
Things to Do When You're Stuck at Home:https://t.co/krN9oixv51
3 Ways to Feel Great About your Body in 2015: https://t.co/k5ilCzbgSB
Basic Training- 9 class course in resiliency skills:https://t.co/L3UYy66saB
Yoga Might Heal-Scientists Say So!:https://t.co/fNMywbqwy6

Journal Articles:
A Literature Review of the Social & Psychological Needs of Ovarian Cancer Survivors http://t.co/b5ezCR3Gxf

Resilience, Positive Coping, & QOL Among Women Newly Diagnosed With Gynecologic Cancer : http://t.co/EqWXKmfjms

Quality of Life in Platinum-Sensitive Recurrent #Ovarian Cancer: Chemotherapy Versus Surgery + Chemotherapy http://t.co/n1nUJtZtCp

Quality of life and patient-reported outcomes in #endometrialcancer clinical trials: a call for action! 

Improving quality of life in female cancer survivors: current status and future questions. @drdonsdizon http://t.co/JjfYeF9roz

Quality of Life in #OvarianCancer Treatment and Survivorship http://t.co/VJlGtP4sUf
American Psychosocial Oncology Society @APOSHQ info, helpline & resources http://t.co/2Q56PjeKQQ

The Road To Resilience http://t.co/lC7kS6OiH2 via @APA

Can We Maximize Both Value and Quality in Gynecologic Cancer Care? A Work in Progress @ASCO  http://t.co/U7PKVfCdkh

Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Report https://t.co/UbERG1CLb5

Cervical Cancer Survivorship: Long-term Quality of Life and Social Support. http://t.co/iIYIUANJGK

Profiles in Oncology Social Media Series: @DrMarkham & the #gyncsm chat http://t.co/SWtCB2SGTe

Other online information:
How Not To Say the Wrong Thing- Ring Theory of Kvetching: Comfort in, Dump out. http://t.co/TF4zJoH1uL

Stress Relievers: Tips to Tame Stress: http://t.co/KzjBIfDOAJ @MayoClinic

Example of UPMC's Survivorship Program: (PDF) http://t.co/HQdOn0copQ 

Cancer Depression / PTSD Info from @cancerdotnet http://t.co/YamzPwc89e

Support Connection Announces Its Next Book Group For Women With Cancer | The Yorktown Daily Voice http://t.co/2OufaiSf6F

Vulvar cancer fact sheet via @NCICancerStats : http://t.co/UWD5sBheIT

Books
The Human Side of Cancer
Happiness in the Storm

Miscellaneous:


Trips for Young Adults: @FirstDescents@athletes4cancer 
Music for Meditation: http://mysoftmusic.com/

Friday, February 6, 2015

February Chat: Care Beyond Medical Care

This month's chat will take place on Wednesday, February 11, 2015 at 9pm EST (8pm CST / 7pm MST / 6pm PST). 

Our  topic will be Care Beyond Medical Care. We will be joined by Reimagine: "Medicine treats your cancer, we help you take your life back. Take a class today."
( reimaginecancer.com | @Reimagine_ME )

For further reading on this topic, here's an OpEd piece by Cindy Finch of Reimagine.ME
http://www.latimes.com/opinion/opinion-la/la-ol-cancer-treatment-psychosocial-healthcare-20150121-story.html

Topic Questions: 
T1: Many patients feel they lose control of their life while in treatment. What can help? What did you do to take control? 

T2: Did you pamper yourself while in treatment? What did you do? What did others do for you? Tips for those in treatment now? 

T3A: Dealing with a gyn cancer can cause stress. What things do you find helpful in reducing stress? What are some resources?
T3B. Did you ever feel pressured to be "happy" and "positive" ? How did you respond to people who said you needed to be.

T4: Feeling sad & experiencing depression is common for survivors. What helps you deal w/these feelings? Did you bring up w/ doctor?

We look forward to having you join us for a lively and informative discussion. 

Dee
#gyncsm co-moderator