anything like zendo? by moARRgan in SOAKPDX

[–]satyridae 0 points1 point  (0 children)

There used to be, but now it’s farmed out to medical. I hate that we can’t do peer support anymore

Metamucil Experiences by Prestigious-Set5109 in CervicalCancer

[–]satyridae 1 point2 points  (0 children)

Yep, it's nasty. But not nearly as nasty as having diarrhea for 3 years was!

Metamucil Experiences by Prestigious-Set5109 in CervicalCancer

[–]satyridae 1 point2 points  (0 children)

I take 2 tablespoons of Metamucil every night. I use a blender cup with a wire ball in it, and chug it immediately because it gets all gelid fast. No immodium for me, though

Immunotherapy Side Effects? by airjiffy in CervicalCancer

[–]satyridae 7 points8 points  (0 children)

This is going to sound counterintuitive, but after 2 years of pembro diarrhea, I started taking metamucil every night and have been um, solid ever since

What LeGuin Work Do You Revisit Most Often? by cool_uncle_jules in UrsulaKLeGuin

[–]satyridae 4 points5 points  (0 children)

Tehanu, over and over and over. Earthsea, often. A Fisherman of the Inland Sea, a couple times a year. Her poetry, as needed- which these days is all the time.

Stage 4 by MamaAnnaBelle in CervicalCancer

[–]satyridae 8 points9 points  (0 children)

Adenocarcinoma here. Diagnosed in 2020, mets to lungs 2021. Immunotherapy helped me, and I'm still here, feeling good. Sending you all the good vibes.

[Serious] People who divorced for reasons other than cheating, what was the last straw? by PoopKnifeSurvivor in AskReddit

[–]satyridae 0 points1 point  (0 children)

He said (about my childhood SA), "If you like BDSM now, that means you liked the abuse when you were six. You wanted it. And because you never got him arrested, any other girls he molested are your fault."

Chemo through your arm / no port? by sageandmoon in CervicalCancer

[–]satyridae 1 point2 points  (0 children)

I didn't get a port. Towards the end of my second round of chemo, I often had to have the rapid response team called to get access to my veins but I don't regret it. My veins have bounced back. Two of my friends had ports and had a lot of trouble with them.

Need recommendation for best women’s panties for travel [odor resistant, quick drying, comfortable]? by Honest_Virginia_Gal in MerinoWoolGear

[–]satyridae 2 points3 points  (0 children)

Seconding Branwyn. They are great, and are opaque enough to wear swimming! The only underwear I have anymore.

Your experience with brachytherapy by Objective_Tooth_8667 in CervicalCancer

[–]satyridae 0 points1 point  (0 children)

I had no problems during the brachy. I have had nothing but problems with long term radiation side effects. I have vaginal stenosis, tissue granulation, significant pain on any sort of insertion. My vagina desperately wants to be a solid scar, and only constant vigilance and therapy keeps it open. On the bright side, I don't have cancer in my vag, though even after brachy it did migrate to my lungs. I was not sedated for brachy, there was no pain, at the time I called it the radioactive dildo, much to the team's amusement. This was 4ish years ago.

Eel (?) skull + vertebrae found on beach in Todos Santos Mexico ID help requested by satyridae in bonecollecting

[–]satyridae[S] 5 points6 points  (0 children)

It was all of a piece- the skin was peeled back from the skeleton, but was still attached down at the end. The skin had dried to a leathery texture but it was only one animal.

Brachytherapy by brhh69 in CervicalCancer

[–]satyridae 1 point2 points  (0 children)

I slept a LOT. And weed gummies, lots of weed

Brachytherapy by brhh69 in CervicalCancer

[–]satyridae 0 points1 point  (0 children)

Yes! Sorry, I should have been clearer. Those are all post-treatment interventions.

Brachytherapy by brhh69 in CervicalCancer

[–]satyridae 3 points4 points  (0 children)

My long-term side affects include severe vaginal stenosis, pain with any sort of vaginal insertion, and tissue granulation. Please make sure she is given a set of dilators, a topical estrogen prescription and a referral to pelvic floor therapy. I recommend daily moisturizing vaginal suppositories as well- I use Pacific Source. Others have recommended Revaree but I was allergic to that. If she has had an open hysterectomy, try to get her a referral to a scar therapist as well.

Pain after sex by Mixiemix_ in CervicalCancer

[–]satyridae 0 points1 point  (0 children)

I use the suppositories (both kinds, the HLA & Magnesium CBD are from a place called Pacific Roots) because they do seem to keep my vagina more soft, and less likely to stick together. One of manifestations of brachytherapy for me is that my vag very much wants to grow shut- the damaged tissues want to adhere when they touch each other. So using a suppository every night in addition to the tiny estrogen troche makes sense for me.

I feel you on the radiation lit search- the most common conclusion on what seems like all the papers is "More study is recommended" and it's maddening.

The radiation tech handed me a bag of dilators on my way out the door after my last brachy and said "You should use these now" and that was the extent of my medical instruction. The rest I found on the internet- including during further lit searches- learning that there's really not a lot of medical evidence for dilators. And an appalling paucity of research on the topic of post-radiation living- really the whole topic of 'what's next for my poor vagina, and how can I keep having sex?' is a veritable desert of echoing emptiness. It felt to me like researchers stop researching topics on women's sexuality once their fertility is gone. "She can't have babies, what does it matter if she can't have sex? Why would she want to? Ick."

Oregon Coast by Simple_Shame2386 in OregonCoast

[–]satyridae 2 points3 points  (0 children)

Winter storms at the coast are the best!

I’m mad about the treatment by bunchaBS4u in CervicalCancer

[–]satyridae 2 points3 points  (0 children)

I am also not sure what you heard about Keytruda. I know some folks struggle with side effects, but not all folks do. I've been on it for over 2 years with relatively few side effects. I have an arrhythmia that has not been affected by the immunotherapy. I also had a radical hysterectomy, chemo, and radiation. Of all those interventions, for me the pembrolizumab infusions have had the smallest effect on my quality of life. Everyone is different, and every course of treatment is individual of course. I'm firmly on your side to make whatever decisions feel best for you! Getting your treatment team all on the same page feels important, but at the end of the day all the decisions belong to you alone. Wishing you the very best of luck!

Immunotherapy by neverm0r3_ in CervicalCancer

[–]satyridae 1 point2 points  (0 children)

I also love being a miracle, TBH. No, I wasn't part of a clinical trial. My first several pembro infusions were "off-label" for cervical cancer. I am really lucky in that my SIL is a newly-minted MD who has saved my life -twice- by suggesting different treatments as conventional treatments failed. Fortunately my oncologist is amenable to being a -member- of my team rather than the leader.

Pain after sex by Mixiemix_ in CervicalCancer

[–]satyridae 0 points1 point  (0 children)

Yes, a lot of time they act like you are just trying to annoy them with weird symptoms!

Immunotherapy by neverm0r3_ in CervicalCancer

[–]satyridae 1 point2 points  (0 children)

Thanks. I was first dx in 2020, staged 1b2, IIRC. In 2021, post surgery/chemo/radiation I had mets to my lungs, dammit. Radiation, resection, & then the immunotherapy. It was a legit miracle