Take care

Stuck in the hospital after chemo - need to rant

Patient

Hey guys,

I don't know if this post is allowed, I feel like I've spammed you enough in the last few weeks. But also, this feels like a place where I can talk to people who've been through, or are going through the same thing. Or similar.

You may remember me as the poster who panicked after drinking alcohol in-between my rounds of chemo, worrying my chemo would have to be pushed back.

Well HOW WOULD I HAVE LOVED IT TO BE PUSHED BACK.

So, I'm on Ifosfamide, which is irritating to the bladder. Which shouldn't be too much of an issue, as I'm usually on high hydratation mixed with a med that protects my bladder.

Lo and behold! A nurse forgetting to connect the drip. Cue to me, 12 hours later, crying and in pain. And pissing blood(y urine).

So the situation is resolved, I'm given meds and really really hydrated, the nurse is given a scolding to (I guess) and the staff apologizes profusely, making sure it won't happen again. It's a hemorrhagic cystitis.

Well alright, we need to wait for the blood to disappear from my urine. I'm supposed to leave on Thursday. Been told it might be pushed to Friday. Alright.

Meeting with my surgeon on Thursday morning. I've been given meds for the pain a few hours ago, and yet, the pain is back. So so painful. Along with nausea. What a mix. Thankfully, before leaving, we tell a nurse I'm in pain. She gets me a wheelchair, and comes with us (me and my mom, she gets to stay with me) to the appointment. Bless her, because everything gets even more painful. Anyway, I don't remember getting into the doctor's office and because I fainted a few seconds and came back to life on the examination table.

I get examinated and the doctor tells me it's going to be a difficult operation. He can't do a surgery on radiated flesh&skin, and the new tumor is too close to the radiated part. So he may have to take a "graft" Of my flesh from best case my leg, worst case my abdomen. The latter being the worst. But he can't know until he checks with the plastic surgeon. Also, the surgery may cut a major nerve in my thigh.

I don't know, I thought the surgery would be easy, I guess. But I may lose major mobility in my thigh and abdomen, and that's scary. I'm not the biggest sports fan, but I love going on a walk, and cycling, and kayaking.

But well, the tumor seems to have dwindled a little with first chemo, so if it keep going, the surgery may be easier!!! Let's hold onto that hope. I don't have much else.

Anyway, let's not stop here.

We're learning that actually, there's still blood in my pee. Leaving may be pushed back to Saturday. But then the day goes, and there's still blood. And so the doctor announces that she doesn't see me leaving the hospital before at list Monday. We have to keep on checking my urine, and if two analysis come back blood-free, then we'll take me off meds, and then if two more analysis still come back blood-free, then I'll be able to go back home. There three levels to blood in urine (not including 0). Last we checked I was at 2. I had been down to 0.5 at some point. But then it went back up. There lied my hope and dreams.

Anyway, this sucks. To top it all of, I'm much more nauseous than during my last chemo. The SMELL OF FOOD GOOD LORD. AND HAVING TO KEEP YOUR PEE IN THE BATHROOM UNTIL A NURSE CAN ANALYSE THEM. THE SMELL. THE HORROR.

Anyway, I think that's the end of my rant. I guess I wanted to ask if any of you has been through something similar (at least the staying to the hospital for longer than you should have, the hemorrhagic cystitis, and the surgery that ends up more impacting than you would have thought), and how you dealt with this?

I'll try to part ways on positive notes :

- My mother's at the hospital with me. She's a (secular) godsent and she helps me get through the day.

- My dad will visit on Sunday

- My care team is still fantastic and talented, and fun to be with

- I'm alive, and everyone around me is trying to keep me so (or so I think?????)

Thank you if you've read up to this, and take care of yourselves 🥰