Showing posts with label survivorship. Show all posts
Showing posts with label survivorship. 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, 13 December 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
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Wednesday, 13 September 2017

Sept. 13, 2017 A Balanced Life - advocacy, survivorship, new normal





As we celebrate our 4th Anniversary, we want to thank everyone who has participated in or followed our chats and all who have supported us by using the #gyncsm hashtag to share information of value to our community. 





This Gynecologic Cancer Awareness Month our topic was finding a Balanced Life after a cancer-related diagnosis. We focused on survivorship, a new normal and advocacy.

We were joined by health care providers, survivors and caregivers to answer these questions:

T1: During treatment, what adjustments did you make (nutrition/exercise/work) to help you stay balanced physically and emotionally?
  • for emotional support I reached out to @cancerHopeNet
  • The most important thing to do during Rx is practice self care - whatever that means for you - exercise, food, time
  • I think it is important to remember to go easy on yourself. We can be our own worst critics. Remind self it is ok to falter.
  • My experiences as a doc are that most patients attend to the treatment needs and have little energy to do anything further
  • I was a hard core exerciser before. I had to learn to be easier on myself. I did a lot of beginner/gentle yoga. It helped
T2: When you finished first line treatment, how did you feel? What things did you go back to doing and what stayed changed?
  • People expect you to "be over it" and move on as if nothing happened. 
  • I felt like a rudderless ship. Had no control of my life for so long, then see you in a month
  • still do same stuff;work,volunteer, make lunch and dinner, son's sports, friends but I don't feel the same. Cancer is always there
  • People expect you to "be over it" and move on as if nothing happened.
T3a: What does the term “new normal” mean to you?
  • The new normal is the development of new habits patterns and thoughts as a result of the cancer journey
  • I think there's so much pressure on patients to have cancer change them in some profound way and when it doesn't they're lost
  • I think that "new normal" is an interesting phrase. For some it is helpful, and for others, it draws negative feelings.
  • the term new normal I guess acknowledges that there has been a turning point. An anchor in your own timeline.
  • My new normal as a caregiver is a recognition of the fragility of life and how a diagnosis can change absolutely everything
T3b: What does your own new normal currently look like? Where are you in your search for balance?
  • I often encourage clients to find whatever version of "new normal" helps them acknowledge that cancer creates permanent change
  • I'm in denial with a touch of overwhelmed in making preventative treatment decisions. So still in the thick of it and unclear
  • And even if clients can return to work, exercise, other activities, there is always the knowledge of vulnerability.
  • And mentally people have completely changed. The old normal is no longer applicable .Cancer is a period of accelerated change
T4: How soon after your diagnosis did you start volunteering and/or sharing your story? What are you involved in for awareness month?
  • I started sharing my family's cancer story when we started up #gyncsm. So, about 4 years ago
  • I took part in @livestrong summit 6 mo after chemo.Learned & was motivated to advocate for myself and others 
  • This awareness month seems less active than last year... I've been doing a tweet a day from me and another from @gyncsm
T5: Do you ever feel the need to take a break from all things cancer? What do you do and where do you turn when you reach that point?
  • I believe breaks are critical. We need time to recharge, to do what we love, to remember our dx is not our identity.
  • As a doctor, I get here often - need to take breaks - coach baseball/softball, exercise, take a weekend off from everything
  • Absolutely need to step back,For me esp after #GCAM - so much going on ( walks, events) and remembering those lives lost
  • I would love to. But I can't. I just can't. Survivorship leaks from every pore.
  • It is tough to stay in a constant advocacy mode. Esp. when a string of advocates pass away. Need time to recharge 
  • So appreciative of long-term survivors who stay active in patient communities IRL and online. Also understand when they go in/out.

You may find a complete transcript here, analytics here and resources below.

You can continue tonight's discussion, A Balance Life, on Smart Patients at
 https://www.smartpatients.com/partners/gyncsm 

We hope you will join us next month on Wednesday October 11, 2017 at 9pm for our chat - #Clinical Trials - How have they changed?.

See you then.
Dee
#gyncsm co-moderator

RESOURCES
"Survivorship is Not a Phase"  #newnormal http://theendoflinearity.com/survivorship-is-not-a-phase-part-two/

New Normal Adjustment after Cancer http://awomanshealth.com/new-normal-adjustment-after-cancer/

The power of vulnerability | Brené Brown https://www.youtube.com/watch?v=iCvmsMzlF7o&feature=youtu.be

@afreshchapter started a patient advocate retreat called Refresh

via @TealDivaNC - Vulnerable http://www.tealdivanc.org/single-post/2017/09/02/vul%C2%B7ner%C2%B7a%C2%B7ble-%CB%88v%C9%99ln%C9%99r%C9%99b%C9%99l

via #MedX: 5 things I tell people who think they can't be advocates https://medicinex.stanford.edu/2017/09/03/5-things-i-tell-people-who-think-they-cant-be-advocates/

A bit of Advocate in all of us https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/

What happens next #ovcahttps://targetovariancancer.org.uk/guides/what-happens-next

Ovarian Cancer Survivors’ Experiences of Self-Advocacy: A Focus Group Study @TLHagan https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4021021/
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Wednesday, 6 September 2017

September #gyncsm Chat: A Balanced Life - advocacy, survivorship, new normal


Christina and I have seen many posts on social media related to finding a new normal, how to become involved in advocacy (self, research, legislative), and issues that affect survivorship. We feel that this month, Gynecologic Cancer Awareness Month, is a perfect time to focus on issues of finding a Balanced Life after a cancer-related diagnosis. While we mainly focus on gyn cancers, this topic is important to anyone who has received a major diagnosis - regardless of the type - and we invite everyone to join us.

This month we are also excited to be celebrating our anniversary. A special thanks to our moderators Drs. Markham, Westin, Boulay and Becker-Shutte and to the OCRFA, SGO and Foundation for Women's Cancer for your support - without which we would not be able to continue serving those whose lives have been impacted by gynecologic cancers.

Here are the topic questions that will guide our hour long chat on finding a balanced life following diagnosis:
T1: During treatment, what adjustments did you make (nutrition/exercise/work) to help you stay balanced physically and emotionally?

T2: When you finished first line treatment, how did you feel? What things did you go back to doing and what stayed changed?

T3a: What does the term “new normal” mean to you?
T3b: What does your own new normal currently look like? Where are you in your search for balance?

T4: How soon after your diagnosis did you start volunteering and/or sharing your story? What are you involved in for awareness month?

T5: Do you ever feel the need to take a break from all things cancer? What do you do and where do you turn when you reach that point?
We hope you can join us on September 13, 2017 at 9pmET (8CT/6PT) and share your experience with finding a "balanced life" with all of us.

Dee
#gyncsm moderator
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Wednesday, 13 April 2016

Re-envisioning Ovarian Cancer Survivorship -April 2016 Chat

Tonight our guests were Massachusetts General Hospital and Harvard Medical School's Dr Don S Dizon (@drdonsdizon) and Dr Teresa Hagan (@TLHagan) . We discussed various aspects of ovarian cancer survivorship with our 43 participants. More chat analytics may be found here.

Below are our topic questions with a few responses. For the complete transcripts please visit this Symplur page.

T1a: What does survivorship mean to you? What is it to be an ovarian cancer survivor?
  • Survivorship in all cancers is defined as any time after diagnosis.
  • Learning to live one's best thru treatment & beyond despite uncertainty, loss of control that ovca dx brings
  • survivorship is defined by the individual. If they like the term
  • Survivorship seems so straightforward, yet it's so subjective and personal
  • Although "survivorship" is defined, everyone interprets differently

T1b: Do you use the term survivor? If not, what term do you prefer?
  • My wife prefers the terms "Experienced cancer" She's an 8 year CML survivor still in treatment. She doesn't like "survivor"
  • I use the term remission. After all I have researched it makes the most sense to me
  • While in tx for 1st recurrence questioned if I really was "survivor," Decided I am as long as I am breathing in & breathing out
  • I'm in search of JUST the RIGHT word to replace 'survivor', personally; I am a well person with a history of cancer.
  • think that "survivor" has baggage for many because it has been linked with NED, so some folks w/mets feel left out of term.
  • everyone should feel free to use whatever word fits best for them. Too much pressure to be positive, to fight & survive
* note: The October #gyncsm chat topic will be on the terms used by those diagnosed with cancer. 

T2: What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?
  • I certainly hear from some of my clients that the mental health/emotional coping wasn't addressed as fully as they needed.
  • Things happened very quickly first-line. No major complications. Lots of concerns AFTER tx ended. Thank goodness 4 support grp!
  • I feel what is missing is more stories of women living with OC. When I was first diagnosed I was sure I would not survive
  • Just because many are still alive doesn't mean they're doing well. #QualityOfLife issues are minimized.
  • I think honesty is lacking in those up front days with regard to the spectrum of emotions: shock, grief, loss, fear, panic.
  • Women seem to seek first to know they are not alone and also practical concerns that come with treatment.
  • Most lacking was when treatment ended the first time. I was a rudderless ship. Looked for other women dx for support
  • palliative care needs to be integrated with the entire experience

    T3: How was the topic of recurrence addressed with you? Did you find it helpful or not helpful at the time - and now looking back?
    • Recurrence is such a hard topic, but I've read too many stories of women who felt slammed b/c it wasn't discussed at all
    • It was addressed but I was told the likelihood was considerable. When I wanted to remove my power port I was asked why.
    • so worried about trying to figure out how to avoid recurrence and survive, what we really need is help to focus on living
    • Discussion about weight is an opportunity to impact risk of other disease and length of life 
    • thinking of the experience as chronic is so important regardless of disease state

    T4a: What are your needs and concerns now? (After recurrence or As you live past diagnosis and initial treatment of ovarian cancer)
    • Now that third remission is 8+ years, distinguishing btn symptoms indicating another recurrence and normal aging process
    • 7 years from recurrence Still worry. Then there is  Chemobrain and neuropathy
    • Was far more afraid of recurrent ovca that I had, than new cancer that MIGHT show up 10 years down the road, fast approaching

    T4b: What issues - physical, emotional or other - currently give you the most difficulty?
    • Need clear guidelines 4 long-term remission after multiple recurrences follow-up-scans, CA-125. GynOnc & MedOnc opinions differ
    • Leg pain from carb/taxol still present. Issues with my sleep. 6 months post chemo. Told leg pain was a chemo gift and would stay
    • Knowing reporting ANY gyn symptom gets me a ride in a machine, concerned w/past rads exposure (25CTs 5PETs +rads for BreastCA)

    T5: What actions have you taken in living past your ovarian cancer diagnosis and treatment? Were you given a Survivorship Care Plan?
    • Serve ovarian cancer community as research advocate and provide peer support. I was not given ovarian cancer survivorship plan
    • Refuse to let ovarian cancer define who I am. Take frequent breaks from being all teal to being just me
    • Went back to running. Completed two 5ks in last two weeks. Working on my diet and trying to find ways to reduce stress
    • Don't always have to be a survivor. Sometimes its good to just be you
    • Lynch team at Dana Farber gave me a Lynch plan. No other plan given except come back every three months. I have to call and book

    We always end our chats by asking participants to complete the phrase "Today I learned..." (TIL). Here are a few from today's chat.

    TIL: Survivor is not necessarily the term of choice. Need to continue to work on the language around this for gyn cancer patients
    TIL there is still room for growth in making sure that all #gyncsm patients feel that their mental health & QOL are supported.
    TIL We still have work to do to improve gyn patient education on side effects emotional needs 
    TIL dismissal of pt needs, fears and lack of transparency in Communication impedes pts attainment of quality of life


    We appreciate the support and RT's by our followers especially OCRFA, NOCC and SGO.

    Do you want to join in the conversation or continue to discuss this topic? Join us on Smart Patients at https://www.smartpatients.com/gyncsm

    Our next chat topic will be "Getting Social with Your Health". Join us will special guest @teaminspire on May 11 at 9pm E.

    See you then.

    Dee
    #gyncsm co-moderator

    Link shared during chat
    Living With Cancer: Coming to Terms by Susan Gubar
    http://well.blogs.nytimes.com/2015/01/22/living-with-cancer-coming-to-terms/?_r=1




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    Supplements / Vitamins Are they helpful? May 8, 2019 Chat

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