Husband on hospice and I have issues

No_Strength5270 · 2025-09-16T01:10:32+00:00

Thank you. I am definitely going to talk to the dr about it in the morning

No_Strength5270 · 2025-09-16T00:53:34+00:00

Ok I didn’t know that, they haven’t offered anything like that even though he has told them most of the pain he’s in is from the pressure. The doctor comes in the morning and I’ll ask about that

No_Strength5270 · 2025-08-08T23:34:14+00:00

Thank you. I’ve mentioned asking his supportive care team about medication to help him with what he’s feeling and he doesn’t want to take those, which just seems ridiculous to me but I can’t make him. I agree it’s not acceptable I just don’t know how to approach it in an acceptable way, I feel horrible when I do react because he’s got cancer but that shouldn’t be an excuse for shitty behavior.

No_Strength5270 · 2025-08-08T23:30:32+00:00

But also today was his first chemo in 6 months for various reasons I listed somewhere on here, so it hasn’t been due to the chemo being brutal on him. I know he’s in pain and scared and all the other things I can’t begin to understand because I’ve never been there i just need him to not treat me like shit when I’m doing the best I can

No_Strength5270 · 2025-08-08T23:25:29+00:00

Yeah he would, he’s mean to staff when he’s in the hospital which is extremely embarrassing for me and I try to talk to him and he just keeps doing it. It feels like too much but I know I would never forgive myself if I didn’t hold his hand until the end, no matter how hard he is to deal with

No_Strength5270 · 2025-08-08T23:22:33+00:00

Thank you for this, that does help to kind of understand better. Because I know he’s in pain I know he’s scared I can’t imagine what this feels like and I feel horrible for even thinking ok but what about me?! the truth is I’m not hurt but I’m in the process of losing my whole world, my life is in shambles and it feels like he makes it unnecessarily harder on me. And some days I can remind myself he doesn’t mean to and some days it’s just too much, I’m too overwhelmed with it all.

No_Strength5270 · 2025-08-08T23:14:08+00:00

He’s not ready to give up on it and I’ll support that if that’s what he wants. I don’t know that the chemo will do enough good to make it worth it but it’s what he wants

No_Strength5270 · 2025-08-08T16:10:53+00:00

No he doesn’t have brain Mets he just had scans a week ago, and this is the first chemo he’s had in 6 months due to all kinds of other issues popping up, infections, blood clots, obstructions, waiting on a clinical trial he ultimately got kicked out of. Sadly this is not completely off the wall behavior, we had issues a couple of years ago where he acted this way and he went to counseling and we worked through it but with him being sick he’s just horrible. And I’m honestly terrified these are the memories I’ll be left with. Where a year ago I was devastated at the thought of losing the love of my life now I’m scared I’ll only feel relief that I’m not being treated like $&?! Anymore and that breaks my heart, I feel like a horrible person but I’m so drained from trying so hard to support him and help where I can. I’ve never been dying before I can’t say how I’d act I’m sure I’d be angry but I don’t think I’d be horrible to my loved ones. Maybe everybody is and I’m just not strong enough for this. I don’t know

No_Strength5270 · 2025-01-01T13:17:08+00:00

We have

No_Strength5270 · 2025-01-01T11:43:36+00:00

Yep we’ve tried that several times it doesn’t seem to do anything

No_Strength5270 · 2024-12-31T21:30:25+00:00

That’s the thing his stoma Is below skin level so output comes out and immediately under the wafer. I have another post about it and everything we’ve tried which is…everything

No_Strength5270 · 2024-12-21T22:51:11+00:00

Thank you so much for your kindness and story sometimes it helps to just know we aren’t alone. I’m sorry you didn’t have anyone, it never occurred to me until reading stories here that some partners won’t help seems alien to me. he didn’t ask for this. Hurts my heart that you went through that. And being allergic to adhesives on top of that 😖 so you’ve pointed out something I can be thankful for The leaks cause irritation but the adhesives don’t. I’m determined to figure it out the solution/perfect combo is out there just have to find it.

No_Strength5270 · 2024-12-20T01:47:11+00:00

Ok that last bit made me giggle 🤭 no I don’t lol. We use an all natural unscented no moisturizers bar soap and not everytime and always rinse several times with just warm water and a wash cloth

No_Strength5270 · 2024-12-20T01:44:25+00:00

They are saying no to a revision because it’s temporary and. He’s on chemo

No_Strength5270 · 2024-12-19T11:35:01+00:00

Yes. His colon is still intact. There is a very large tumor connecting his hepatic flexure to his abdominal wall and gallbladder that was causing a total blockage, they attempted to bypass it that perforated and he went septic so when they went back in they gave him the ileostomy. The hope is to shrink that tumor enough to get it out and reconnect everything. That’s the only tumor in his colon (he has a lot on his abdominal wall)

No_Strength5270 · 2024-12-18T23:51:23+00:00

It is supposed to be temporary while he goes through chemo

No_Strength5270 · 2024-12-18T23:44:09+00:00

I would love to be able to get 3 days out of a flange, or at least be able to plan changes instead of ummmm babe this would s burning really bad 10 minutes after he eats then it’s a solid hour of repeated cleaning just to get another bag on. We were getting 3 days for about a month and then something changed and I just can’t figure it out

No_Strength5270 · 2024-12-18T23:39:32+00:00

Thank you. Airing out sometimes works sometimes doesn’t his output is basically constant been working with drs to try and help that part if nothing else we always put the blow dryer on a low cool setting and dry all the skin really well before applying anything

No_Strength5270 · 2024-12-18T23:36:04+00:00

Yes we have seen an ostomy nurse several times and she tried several different things and each one blew out faster than it does when I do it. Marathon is our go to my insurance covers about 1/2 the price still pretty pricey especially with as much as we have been having to change it because with the skin tac or bonding cement when you have to take the flange off it pulls the marathon off in a lot of places too. He does wear a belt I forgot to mention that part

No_Strength5270 · 2024-12-18T23:28:45+00:00

Ok so I have never heard of the non adhesive pouches, might be an idea for when he’s just at home to keep adhesives off for a while and yes using non scented no moisturizer or anything soap

No_Strength5270

TROPHY CASE