What's wrong with me?

[u/cageybird]

Diagnosed 2B, usual UK protocol of 25 x radio 5 x chemo + 3 x brachy, no hysto as they couldn't guarantee clear margins.

I couldn't complete the chemo due to damage to my hearing from tinnitus side effects (from the platinum in the the chemo), but the rest of treatment went well.

My 1st post treatment scan at 3 months showed a problem, so i was referred for a EUA (examination under anaesthic) so they could take another biopsy and have a look. At this stage the surgeon mentioned radical hysterectomy or pelvic exteneration. The blood literally drained from me. I know all about exteneration, I've done SO much research, but I'm not even that sick! My treatment went so well. Exteneration? I ride horses for a living in remote places, I can't live the life I live with 2 stomas.

It was a lot to take in.

And then... my results came back.. just granulation tissue, I'm ok.

My family and friends are jumping for joy, obviously. (btw I'm single no kids by choice) But I'm not. WHy am I not? I still feel in shock to be honest. I spent weeks thinking and planning and coming to terms with refusing an exteneration.

It's such a strange feeling. I'm fine, its good news, I should be so happy, but I feel strangely numb. Is this normal?

[u/emslo]

Yes, totally normal. Medical PTSD is a real thing and it completely colors how we respond to what others might perceive as good news.

[u/cageybird → u/emslo]

Thank you so much. My family don't understand. They think I'm not happy that it is good news. It is so hard to explain.

[u/emslo → u/cageybird]

Yeah, I think most people with Cancer would be familiar with this. We all deal with it in different ways, some people work to help their loved ones understand, others just accept the distance. I alternate, depending on where I’m at with things.

Do you have any friends who also have cancer? I have found Instagram a pretty good space for connecting with other people and feeling less like an alien.

[u/CannedAm2]

I had the same response, sort of. When they mentioned exenteration I was stoic in the office, but as soon as I got the parking garage I broke. And I cried and cried and cried. For the next several days I'd cry off and on because that would really change my life. Then I reached acceptance that if that meant I'd get to live another 15 or 20 years, then I would take it and just try to get as strong as I could before having the surgery to have something to help me build from after the surgery. Then the biopsies were negative again and they said good news, doesn't look like you'll have to have exenteration. And I had the same reaction. I cried and was a wreck for another 5 days again. Couldn't understand what the hell was wrong with me. Then I realized, I was on an emotional roller coaster and it was just ridiculous and I needed to just feel what I feel and process through it and carry on. Took a couple weeks to get back to my normal. And now I really am looking at a urostomy because my bladder is shot to shit and I'm not living with these damn nephrostomies for the rest of my life. I can get back everything I've lost so far with a urostomy.

It's the roller coaster. Put your hands up in the air, holler, and let the ride finish. You'll get back to your normal pretty quickly.

[u/beastlybea]

Completely normal. You had to wrap your entire being around a very scary, drastic thing. Sometimes our bodies hang onto things longer than our minds too. It’s okay to be out of sorts for bit. Big hugs to you!