We had 36 participants join us to discuss how cancer patients and survivors find balance in their lives. You may find the complete transcript here and analytics here.
Below are a few highlights from the night's chat.
T1: When you think about finding a balance in your life after a cancer-related or tumor-related diagnosis, what comes to mind?
- i think of being able to do what I liked to do with my “old normal “—travel, go out in the evening to concerts, etc. Right now my consciousness is dominated by cancer related thoughts. #cancersm
- Balance is really hard to find when dxd as cancer sorta takes over your life, yet it's impt to try to find some. #cancersm
- I always considered myself a previvor due to family history, but after the genetic mutation diagnosis I felt much more urgency to give my own health attention vs. career and young kids #CancerSM
- It’s not so much about finding balance but more... rebalancing your scales. Cancer’s impacts are here to stay so it’s about trying to find ways to do your normal life with it always lingering on the sidelines. #cancersm
- When scan time comes up every six months, I find it hard to balance the anxiety with other priorities.
- Finding balance means something different to each of us. #cancersm
- I had no idea, in 2003, how DIFFICULT it would be to find balance. I still haven’t found it yet! #CancerSM
T2: How do you balance your treatment/healthcare schedule with work and/or taking care of children or elderly parents?
- I try not to do anything cancer related before 10 am or after 7pm and on the weekends Sometimes that is not possible, but that’s my goal
- LOL. with a smile? Schedule multiple appointments in the same day or after/before work hours so you don’t have to use all of your vacation time. Try not to have a breakdown on the NYC subway, but if you do, it’s okay. #cancersm
- setting boundaries in your own life is a real skill! I’m still learning. #cancersm
- Since my 3rd recurrence I’ve been disabled and spend my extra time/energy volunteering. Focusing on cancer related work means they understand when I’m sick. #cancersm
- when it comes to work you may need to avail yourself of legal benefits like reasonable accommodations, FMLA/state leave, etc. sometimes it can feel like asking for a favor, but those who are eligible should remember it’s a right! @TriageCancer has resources to help! #CancerSM
- @NavSurvivorship @TriageCancer @CancerAndCareer is another great one for that type of info #cancersm
T3: After diagnosis, did you change how you ate or how much you exercised? Did you start a new activity or stop doing an activity?
- There are growing data to support exercise to prevent cancer recurrence - and you get the bonus of stress relief!! #gyncsm #cancersm
- yes!! And expectations can be different but not lowered.
- @gyncsm I remained exercising because I knew it was important. It helped keep my energy up and I felt strong even though I was going through something that made me feel weak mentally. #cancersm
- I was an avid tennis player and gave it up as I am too tired. Not liking my new normal #CancerSM
- Also some evidence that exercise helps mitigate treatment-related symptoms (fatigue, poor balance, etc). #gyncsm #cancersm
- You gotta cut yourself some slack. Exercise is always important. As is healthy eating. Sometimes neither is doable. That's ok. #cancersm
T4: How much of your "cancer life" do you share with those in your life that haven't been impacted by cancer or a tumor?
- It’s part of me I can’t hide it. It’s made into who I am today #cancersm
- I was scared at first to share anything. But I slowly started to share on social media, and I got so much support. I enjoy sharing my #cancerjourney story and hearing others! #cancersm
- I talk about the brain tumors A LOT. I think it freaks ppl out, but I gotta talk abt them. Also talk about breast cancer risk too. There’s more than BRCA & I’m gonna say it! LOL #btsm #bcsm #pten #CancerSM
- Surprisingly perhaps, not that much. Not sure if many read my blog even. #cancersm
- hard to say. Most people I know have personal experience of cancer or a family member with cancer...or they are previvors! #cancersm
- Very little. Except in writing (twitter, blogs) but usually strangers are reading those. Absolutely NOTHING about my experiences with #lateeffects. It freaks people out (cancer from cancer treatment?) and I’m still emotional talking about it #cancersm
- I tell my hubby whatever I am thinking or feeling. With my Mom and Grandmother I am more reserved. They understand but also don't understand. They can take things out of context which just creates more issues that I don't want to have to deal with. #cancersm
- Disclosure is SUCH a personal decision and there is no one right answer. BUT, there can be long term ramifications and people should be empowered to know they have choices! https://t.co/ltMxWp6ZBd #cancersm
- I used to kinda keep cancer-land on Twitter and other on Facebook but they both blur now. In person, I sometimes chat about. I do go online mostly to converse with those who "get it". #cancersm
- Being an advocate I openly share with anyone who is interested. I try not to clog up my personal FB page with all Myeloma stuff. I’ve created a separate Myeloma page.#cancersm
T5: How soon after your diagnosis did you start volunteering and/or sharing your story? How do you balance family needs, personal needs, work needs and a desire to advocate for yourself and others?
- I went to a @livestrong survivor summit a year after my dx and my volunteering and advocacy grew from that experience. I learned I could make a difference and knowledge was powerful #cancersm
- I had to stop working because of cumulative effects of chemo, brain surgery (benign meningioma) and PTSD. Before that I was a data analyst and managed research projects. Research Advocacy is how I can benefit myself and others #cancersm
- Exactly 2 years! I went from not wanting to talk about it at all, to realizing I needed to. I’m still trying to figure out the balance part. But hey, aren’t we all? #cancersm
- During my dx, I performed some stand-up about it as a way to battle my shame around a colorectal dx. Then, quiet when I felt lost in the hurt. After attending a retreat with @yacancercanada almost 2 years after my dx, it really activated me as a patient voice. #cancersm
- Advocate burnout is real - for your own care and in your more general patient advocacy. @JBBC is doing some writing on this. Important topic. #cancersm
- I was the face of #childhoodcancer - always accepting invites to speak. After #lateeffects from tx, I didn't speak about it for 7 years. I felt like I failed survivorship. Now you can find me angry tweeting about cancer and NOT talking to my family/friends about it #cancersm
We like to end our chats with TIL standing for Today I Learned...
TIL (relearned) - that I’m not alone! #CancerSM
TIL: how people accept cancer as part of their experience but don’t let it define them!! #cancersm
TIL that finding a balance, or a new normal, is a
process that takes times and many different forms + it's an important
consideration for anyone whose life is touched by cancer: from previvors
to those no longer in active treatment/survivorship #cancersm #endcancer
TIL:Remission is living peaceful life , wish you all a peaceful life that you strongly deserve, bless you #CancerSM
Not so much a TIL, but more “today I am
reminded” that we all struggle and are trying to navigate the aftermath
of cancer. I am so thankful for this #cancersm chat for the connection and encouragement! Let’s keep working together!!
Mark your calendars and join us for our next #gyncsm chat on Wednesday, September 11th 9pm ET on "Breast and Ovarian Cancer Connections".
During September,Gyn Cancer Awareness month follow #IWishIKnew to hear from real Ovarian Cancer survivors about what they wish they had known before they were diagnosed-- and join the campaign!
And remember to tweet things of interest to the gyn cancer community by using the #gyncsm hashtag.
See you next month!
Dee
#gyncsm Co-moderator
No comments:
Post a Comment