Posts by brightgardener8

Grace Fowler said:Hey everyone, hang in there!!
I haven't been posting much lately because I've been dealing with an acute bout of sciatica—and let me tell you, it hurts like hell. The painkillers and injections have been pretty much useless so far. To make things even more interesting, my fever spiked up to 101.6. My blood work shows some crazy inflammation levels (CRP is at 187.8 when the normal range is basically zero to five), which points to some kind of infection. It’s not my kidneys or my bladder, but if this doesn't settle down by Monday despite the antibiotics, I'm heading straight to the ER for surgery. Fingers crossed everything stabilizes...
Who am I kidding? I'm staying positive for Mom:-)
Hang in there: seriously, you can do this!!!!!
Best, Grace

Ugh, Grace, I really hope you get through this ASAP. You honestly cannot catch a break, can you? Sending good vibes your way—stay strong!

I’m so sorry; my deepest condolences 😢

Melissa Kim45 said:How are you holding up? 🙂

I don't really have the energy for these massive, deep-dive posts, and honestly, I don't think it's even necessary because I find pieces of myself in pretty much everything I read on here.
It basically means you've already covered it all and we’re just on the same wavelength. And why wouldn't we be?

We went through our own version of this circus with my mom for a while, but unfortunately, that phase is behind us now. It's over. Things are quiet now, but things are also way worse. It’s exactly what you said yourself.
Mom is in a nursing home now, and she's completely immobile. There were days when I genuinely thought she had turned into a vegetable because she was doing so poorly. Then they "brought her back" using Mannitol just enough so we can actually hear her voice again. She didn't speak for about a month. She stopped eating entirely. Now, she's slightly better again.

As for me? I check in and check out whenever I can, but I don't try to control the timing of it all—that would just be too much. But, hey, life goes on.

quietpilot87 said:Maybe it’s about time I finally chime in and say something.

It's honestly good to see stories like this being shared. 🙏

Melissa Kim45, how’s it going? How’s your mom doing?

It’s been way too long since I’ve seen any of those witty posts of yours...

My deepest condolences... 😢

slyseal28, I am so incredibly sorry to be reading this right now.
You guys have been so tough through all of this, and you have to keep that strength up. You’ve spent so much time cheering us all on, so now it’s our turn to rally behind you.
I don't know, this really caught me off guard...

Linda Peterson37, please don't lose heart. I truly get it—we're going through the exact same thing with my own Mommy...

Grace Fowler said:As far as I'm concerned, things are looking up a bit. We're heading to Germany this Sunday for immunotherapy, and I'm actually looking forward to it.
Don't get mad at me if I try to be optimistic every once in a while... my wishes are coming from the heart. :-)
Grace

Grace, safe travels tomorrow and hang in there!

Amanda Miller69 said:Another fighter lost her battle this morning. My mom passed away at 7 AM, peacefully in her sleep.🙂🙂

I’m so sorry, Amanda. My deepest condolences. 😢

Angela Wright said:Hey brightgardener8, what's the word? How are things going with you, your mom, and your sister?

Check your PMs. 🙂

My deepest condolences 😢

Amanda Miller69 said:Of course, the "great professor" didn't even show up today. My brother told me not to bother with the other doctors because they don't actually make any decisions anyway. So, back to waiting...😠

Don't let it get to you, Amanda Miller69, you're still pretty new to this. You'll find that you eventually become immune to this kind of nonsense. Just ask anyone else on here...
Stop wasting your breath fighting windmills.

rustyscout31 said:He’s recovering great after surgery, but it’s like he just has zero energy... Should I tell him the whole truth right now? Like, the unfiltered version? 😕 Help me out here!!

If you ask me, NO. You already mentioned he’s feeling depressed, and honestly, hearing the raw data might just crush his spirit completely.
Sometimes it's better to soften the blow if it gives him the mental fuel to keep fighting and helps him stay focused on getting better.

I’m speaking from what we went through with my mom. If we had laid out her prognosis to her straight up, I don't even think she would have made it out of that depression. And let's be real—she used to spiral over much smaller things anyway.

At the end of the day, you and your family know him best, so you'll have to make the call based on his vibe. Good luck!

Elizabeth Diaz60 said:My mom is starting up her chemo again (CCNU tablets), which she takes once every six weeks. She’s bedridden now. Back when she was still mobile, she took the same thing along with Reglan, and the nausea was just brutal—she couldn't stop throwing up. To fight the vomiting, we're rotating between Kytril and Zofran. What has everyone else dealt with?

For my mom, Zofran was a total 👍 She would take it about 3 hours before the chemo session. It completely knocked out the nausea for us.

Amanda Miller69 said:I went to see her yesterday, and thank God she’s almost back to herself, even if she still drifts off every now and then. She’ll recover, though. I’m going to try to get things sorted once she’s discharged from the hospital on medical leave, but we’ll have to see what the doctors say. The one I spoke to yesterday told me we’d discuss the next steps of her recovery when the time is right. Right now, the goal is just to get her back on her feet and make sure she doesn't just stay stuck in bed. Honestly, I'm still a little worried about how things will play out down the road.🙄

The main thing is that she’s lucid and aware.
Start by applying for that medical leave (assuming you can actually pull that off), and you'll have a better idea of things in a few days.
It’ll probably be enough to eventually find someone to sit with her for a few hours a day while you're at work.
I sent you a PM yesterday. If you're in New York City and you need a home health aide, let me know. I have a whole list of people. Of course, you'll have to pick someone who actually fits your needs.

Melissa Kim45 said:We’re still fighting through this—and even though it’s rough, Mom can barely even walk—but we aren't backing down. Things feel a bit uncertain right now, but honestly, that's not even the hardest part. I'll check back in with more details once I've caught my breath.

Melissa Kim45, you’ve been MIA for a while and I was actually hoping you’d drop some witty post to brighten everyone's day... You know you always know how to make us laugh. 😁

I'm so sorry to hear things have taken a turn for the worse on your end.
How are you managing everything with your mom? Are you getting any help out there?

It’s been three weeks since we moved Mom into my place, and let me tell you, it's quite the "happy little family" dynamic...
My sister, her husband, me... we're all basically camping out around Mom. There is absolutely no way one person can handle this alone; it’s just too much.
The constant struggle with waking her up, bathroom trips, diapers, changing her, laundry, meds, monitoring blood sugar, insulin shots, cooking, cleaning... it's just endless.
And Mom? Some days she’s totally cooperative, other days she’s being stubborn, sometimes she’s lucid, and sometimes she's just not there.

The nights are the absolute worst—when she gets up and starts wandering around the house, tripping, falling, getting back up, then falling again...
One night she even snuck into the kitchen and swiped a banana. At least that time she actually found her way back from the kitchen without a problem! 😬

Angela Wright said:Thank God for the mannitol🙏! Can she take Dexedrine?
Can you please explain how they actually ended up administering it to mom? Like, what did you say, what was their response, all that? People need a blueprint for when things go south.

It’d probably be better if the nurse wrote this out since she was the one taking mom to the ER with my husband yesterday...
Anyway, they sat there waiting for over three hours, and it felt like everyone was just trying to brush them off or pass them along to someone else... classic! At first, they told us they weren't giving mom the mannitol because she didn't "need" it (or some nonsense like that), but then they ended up giving it to her anyway.
Meanwhile, some nurse had the brilliant idea to decide we shouldn't feed mom because her blood sugar was over 9 (?!?!?!).
Honestly, people, when you hear something like that from a supposed medical professional, it makes you want to go postal.
First of all, mom is a diabetic on insulin, so her blood sugar needs to be LOWERED—and 9 is already high (she'd eaten breakfast before getting to the hospital).

Now we're dealing with nonsense from mom's famous primary care physician. According to him, WE are now responsible for bringing all the paperwork to the board every single month (just so she can get a medical professional assigned to give her injections), even though he and his nurse have been handling everything until now.

Where the heck is Amy Hayes28??? 🤷

dina9 and d_seed, so glad to hear things are looking up!

Mom got some mannitol yesterday, so she actually perked up a bit by the afternoon. She even sat down for a game of Sorry! with my sister and me 😁
She wasn't exactly sure what the pieces or the dice were for, but hey, the win is that she actually showed interest in doing something at all.
We’re just taking it one day at a time and keeping the vibes positive...😢

Linda Peterson37 said:Alright, thanks, we’ll go with that plan! Here’s the thing, though—my whole family and I are total amateurs when it comes to anything medical. Honestly, if I hadn't come here to find some actual answers, I wouldn't even know how to help or which direction to take. All we’ve heard from the doctors is this dismissive, "Well, what do you expect? You know they're seriously ill," or "Don't let anything catch you off guard, these are all normal symptoms." Excuse me?! What is that supposed to mean? That because someone is critically ill, we shouldn't bother trying to do anything? If that's the logic, then why bother with anyone at all, since we’re all going to die eventually anyway. Seriously, give me a break!
😠

Honestly, thanks to everyone for all the advice. Seriously, without your collective experiences to lean on, we would be absolutely lost right now.

Linda Peterson37, we’re going through the exact same thing right now. Honestly, I was just telling Angela Wright that if I didn't have this forum to vent to, I’d probably be losing my mind.
I’ve at least braced myself for whatever's coming our way, so I won't be completely blindsided when the hammer finally drops. If I hadn't prepared, I'd honestly be in total shock right now—and we all know that would've been 100% the case.
My sister’s at the ER right now with my mom, just sitting there waiting for someone to actually do something. She’s been in pretty rough shape since yesterday—just constant, heavy panting and she can barely even stay on her feet. It's a mess.

Angela Wright, if they already turned down my mom's request for a home health nurse, how on earth are they supposed to approve home nursing visits? It makes zero sense! Since home nursing isn't even part of primary care—it’s handled differently depending on which region you live in—I’m going to try pushing that angle too.
The one silver lining here is that the woman watching over my mom while we're all at work knows how to give injections, so we managed to figure things out ourselves.


Linda Peterson37,
I'd just add one thing: home nursing visits aren't actually the responsibility of the community nursing service. You get a visiting nurse based on requests from specialists and GPs, so people really need to pay attention to that distinction.

In our case, we were stuck for two months because I used the wrong terminology. I kept asking for a home nursing nurse, and my GP kept acting like he was some kind of genius. It wasn't until I finally lost my cool and told him straight up that the oncologist confirmed my mom is entitled to this care that he suddenly "remembered." He goes, "Oh, yeah, but that's not a home nursing nurse, that's a visiting nurse." And just like that, everything was fixed...😈
Then again, maybe you guys have better doctors than we did...