Survivorship: How is it going?
Hello dear ones❤ I'm interested in our experiences navigating survivorship: what do you find helpful and/or healing? How do you define healing? Is there something or someone you're looking for but can't find? I'm curious about this because I notice many of us here on Mayo Connect find comfort and community with other survivors; sometimes our friends, families and loved ones don't want to talk about our cancer anymore. They're just happy and relieved we're still here with them! I get that, but I feel drawn to explore this common ground we share, and the sequela we still experience. If this resonates with you, I'd love to hear your thoughts. Thank you in advance: I know this can be triggering, so I deeply appreciate anyone willing to engage on this topic. (This photo of a gorgeous Maya figurine looks like a healer to me!)
Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.
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@1995victoria Goodness, what a challenging road you're on 🤕 Thank you so much for sharing it with us, especially since you're selective with whom you do share your diagnoses. And thanks for reminding me of Bette Davis! My friend and I often amend her marvelous words with our own, slightly wry, "Aging is a privilege." And I'll keep coming back just as you are 🥰 Thanks again for being here.
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3 Reactions@mommacandy I appreciate your response so much, and yes, it's exactly what I was asking: what are the navigation points during and after our diagnoses? I often joke that I "lead with rage," so I find your anger about a return of illness to be completely appropriate. The experience of being told you don't look sick/don't look like you've been through the wringer is so frustrating, and your comment about there being no "in between" is well observed: I'm so interested in the "in between" spaces, because after a life of the extremes, especially in my thinking, I'm working hard to sit with the discomfort of not knowing and being in a kind of limbo. It's not easy, but for me, it's been helpful. Thank you for your honesty and thoughtfulness; I really appreciate it, and you 🤗
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1 Reaction@naturegirl5 Your comment confirms my belief about how important these spaces with folks who "get it" are. If not for them, we often only have people offering well-meaning but sometimes inappropriate and/or unhelpful comments, simply to assuage their own discomfort. I get it, I do: but that's what makes this space and others so essential for our healing.
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3 Reactions@ffr wanna share the sarcastic comments? i'm known for my sarcastic shirts etc even wearing one to the doctor's office right after i called them and demanded a CT scan (which they did to "shut me up" and it proved i was right) that said "I may be wrong but i really doubt it" ... my brain fog doesn't let me think of them off the cuff these days...and believe me i need some new good ones... I have one shirt that says "zero days without sarcasm" another that says "I didn't mean to offend you, that was just a bonus", and many many more... (one with a guy at a news desk saying "Breaking news, you're an idiot", another that says "if you can't deal with my sarcasm don't speak to me" well you get the idea)
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5 Reactions@valentinaz Thank you! ❤️
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2 ReactionsI want to share an very interesting book called The Cheating Cell= How evolution helps us understand and treat cancer.
by Athena Aktipis
I've gotten the e-audiobook from the library. It is a very difficult book to understand sometimes, like when it talks about PT53 gene and how it works in our body. But I repeat some chapters to make sure I understood the complex processing of the genes working in our body when then protect us, and when they mutate.
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3 Reactions@mommacandy 😜. In my family we are masters of sarcasm. We grew up hearing my mother do this and continue this tradition. I haven't transferred this to t-shirts but this is a wonderful idea. And then to pick the shirt for the occasion...
Like you, I don't come up with such a comment until later. While I don't want to deliberately hurt someone else's feelings there are times when what's left other than a little sarcasm? I remember you sharing about advocating for the CT scan - and you, knowing your own body, were correct!! The t-shirt "I may be wrong but I really doubt it" says it all.
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5 ReactionsThis is such a great discussion topic! After three surgeries for cancer, I can say: "I am more than my cancer diagnosis."
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4 ReactionsI am enlightened by this conversation thread and so appreciate communicating with women who get it. (Until I stepped into my cancer shoes, I probably didn’t get it, either.) Nor would I have imagined my desire for privacy or the lack of respect for it, even upon request. I have a large family event coming up and I need to practice, “I do not like to discuss my health, especially at a happy social occasion.”
Re unstated sarcasm:
Where do you want me to send the results of my last medical test?
Why don’t you tell me about your last pelvic/prostate/rectal exam first?
Huh? What? (with a quizzical look)
I also have some nasty replies that I would like to spurt out, but have not had the guts. (Though that would certainly make the gossip mill more exciting! 😆)
May we all find a little joy and laughter in each day.
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2 ReactionsFrom the book I recommended yesterday.......has anyone heard of TP53
Gene TP53 can kill proliferating cancer cells but can also kill off good cells that proliferate for healing and promote early aging
I heard about it at a scientific lecture earlier this year at an MPN conference and now "reading" about it in this book
Anyone heard of this gene......it can be good and bad