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 #ovca https://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/

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