Hon, you are not depressing me ... I deal with depression too, and I know what you're talking about ... and sometimes you gotta get it out. I feel for you, for sure, but if you gotta talk, you talk.

It's a scary balance to self-advocate without self-diagnosing. You do have to be proactive, but Google isn't always your friend. Though Google does lead us to places like this! smile My recent medical frustration has been a broken hip. They had all sorts of theories about why I must have broken my hip (and bad advice they wrote in my medical chart, that really messed with my in-hospital treatment!), but there wasn't a whole lot of worry about actually fixing the hip, or telling me how to care for it after the surgery. You mentioned in a post that you disagree about a med side effect -- they were sure I'd fallen as a result of a med combination, and refused to let me have some of my long-term prescribed meds while in hospital (I had to argue for every dose of one, which you do NOT stop cold turkey! my psych had fits when he found out) when I'd really just gotten distracted the way moms do, saw a disaster about to happen, and went that way instead of watching my feet ... which then tripped over a pile of stuff that shouldn't have been where it was. Perfectly ordinary scenario. (And some good tae kwon do twist and roll so I wouldn't hit my head, which explains the landing on my hip, alas.) I've had to stay OFF Google because I don't want to know recovery statistics for elderly people and broken hips ... I'm not elderly, just chemo and radiation affected ... and all the stats are scary. But I'm healing. And at my second post-op appointment yesterday, he didn't rule out Tae Kwon Do in my future either, though probably no more serious sparring for me. (Which I am okay with. I'm a chicken. LOL.)

But without the experience from all this cancer nonsense, I wouldn't have even questioned as much as I did, during my stay. We learn. You're here. I hope you don't end up having to stay here, but if you do ... you'll have folks to help you know what questions to ask. You REALLY don't have to fret right now. You did the right thing by getting the biopsy done. That was AWESOME self-advocacy. Now is that waiting for the results time. After that is the time to either fight or throw yourself the biggest party ever. smile Right now, just hang in there.

KristenS


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery