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/