The in-between life and death cancer

@grammato3
Sorry for late reply. Ive got so much feed back on here, its hard to keep up.
Adaptability has become my go to. Like you said, I try to write down questions the second they come up or I lose them in the rush around of appointments I have. But I still end up walking out of oncology like “dang, I forgot to ask.”

And boundaries with friends or family that one is huge. I know you care. Is usually all I say an its saved me from a lot of unhelpful advice. I do feel bad when I do that tho.
And I appreciate you seeing that knack for writing in me. 🙂 Freelance health writing is something I haven't heard of. If you have names of publications that pay and treat patient voices well, I’d love to hear them. Distributing proceeds to orgs like the one you mentioned feels like a good idea.

@ffr It really is a gift to feel understood here. Thank you for saying it out loud.

I use BC and AC in my head too. My BC self had no idea how much life could split in two like that. And I get what you mean about protecting family and friends. I learned the same thing fast their sadness would boomerang back and land on me, even when they were just trying to love me. I still haven’t called a therapist yet but I will 😉

I’m glad sleep is mostly better for you now. I know those 2am nights though. If you’re up, know I’m probably awake somewhere too, thinking of you right back. 🩵

Thank you for being one of the people who gets it.

@rashida Thank you, that’s so kind of you to say. Writing helps me sort through all this, and I’m glad it feels validating for you too.

The profile picture is actually an avatar, but I am bald in real life. I love my wigs, though lately hot flashes have other plans. I’ve had to yank them off and stuff them in my purse like a pet gremlin more than once haha. The glamour of cancer, right?

Appreciate you seeing me either way. 🩵 here's a real Picture of me.

@shellyk89
Your message is so validating. Thank you for sharing.
It can be so hard to live wearing the “normal” mask, even among my closest family & friends. On the flip side, sometimes acting normal makes me feel normal - a short blip of forgetting! - and that gives me a small reprieve from my angst and anxiety.
Other times I wonder “Will this be the last time that I….?”
It is tough to walk in these shoes, isn’t it? Our “brave” and “courageous” battles are so much more than physical.
One minute at a time!

@shellyk89t: Definitely hard to keep up with questions, seem the more we ask the more that pop up!

As far as publications, you can check online. Here were some suggestions to check out:
https://litworth.substack.com/p/30-publications-that-pay-for-writing-2c6
https://thesicktimes.org/write-for-us-part-time-opportunities/
https://healthjournalism.org/freelancers/freelance-market-guide/aarp-freelance-market-guide/https://writersweekly.com/marketing-secrets/13-parenting-publications-that-pay-writers
Let me know if any of these are possible leads for you!

Oh Shelly you have made such a mark with your writing . Don’t ever think you are not seen . You possess an eloquence to put your own feelings , taken from inside your heart , and put them to paper . Then, you’ve taken the next leap and shared them . Kudos to you and thanks from my own heart . My husband wrote “ poems” for years . Mostly in time of darkness but time of happiness as well . Throughout his battle with the beast , his cancer journey he wrote , and he wrote and he wrote . Sometimes he shared, he even was brave enough to share in the chemo suite during treatment , and it boosted his spirits to read the comments from those who chose to read . In the end please know that those very poems and so many many more he wrote now have become solace , part of his legacy and when I read some myself , and I do often , I feel so very close . His most inner thoughts , put to paper and he’s here again , for me , for our grandchildren , for my children and our friends . Keep going ,keep writing keep Sharing , you have a precious gift .

@craigtannarbor, welcome. How did your daughter's surgery go? How are YOU doing?

Thank you for sharing your story so poignantly and purposefully--purposefully, as it powerfully suggests a response to your spoken lament: "I am terrified of being forgotten and terrified of being remembered only as 'the sick mom.'" Allow me to explain. My mother kept a daily journal from 1945 until soon before her death in 2004. While I love reading how she canned 50 quarts of applesauce in a day and purchased a coat for $9.99 back when, I am most interested in how she grappled with pain, grief, fear, loneliness, lost dreams, widowhood, cancer, and, finally, early dementia. These journal entries continue to serve as my own survival manual: how did she deal with (fill in the blank)? Throughout my adult life, I checked her journal entries which covered struggles mirroring my own. What a gift she gave me. As such, she inspired me to keep my own 5 line journal for my children. My entries are brief and real. All this to say, "Sister, keep up your writing--journaling 'in the moment.' It can truly be a gift to give your precious children for years and years. You've got this!"

@rmbruins Welcome to Mayo Clinic Connect! I see you have been a member for a while but this is your second post.

My father kept a daily journal from high school on. He was a Navy man, on the USS Enterprise at Pearl Harbor. He helped instill in me, the love of writing. He passed at the ripe old age of 96, his journal nearby. All this to say, journaling your daily story, or addressing innermost thoughts, can be so enlightening. Here is a discussion we have on journaling: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
Ginger

I hear you loud and clear. A beloved family member has (less than a month ago) been diagnosed with stage four cancer. I grieve every moment of every day when it creeps in -that he won’t see my niece marry the perfect guy, or be there as the great uncle for the kids she plans on. He was a marvelous influence on our niece’s life especially as a little girl. I feel cheated that we won’t travel the world together. Laugh at silly jokes or remember our mom in her last years with us.

I’m afraid for his life being one round of treatment after another-the pain and fatigue. The loneliness, the anger at being victimized by a horrible cancer. I so hope for a miracle or at least time where he can enjoy the simplest things-like a beer on a hot summers day, being on a bike with friends-just MORE QUALITY TIME,

He hasn’t had an easy life-which makes the cancer even more cruel-if possible. Our family will do anything at all to help-I have been told just knowing that is a big relief.

If anybody out there can tell us what we can do to help mentally and spiritually-please leave us a reply here. We check every day.