Support for families dealing with cancer and other serious illnesses (Part II)

Zachary Howard2, seriously, this has been dragging on way too long. I really hope he can get it sorted out so the guy doesn't have to suffer through all this crap anymore.

Amanda Miller69 said:My father-in-law is still struggling with that damn muscle that's completely blocking his digestion.
He’s going to try to "blow past it" today and through the weekend, and if he can't make it work, he promised he'll go under the knife on Monday to finally get this sorted once and for all.
Luckily, my father-in-law is a pretty tough guy and handles all of this stoically, though he does have those moments where he mentally hits a wall—thankfully, they pass.
I don't even dare get my hopes up anymore, because usually, once I start feeling optimistic, everything just goes sideways.

Man, they should have dealt with that immediately instead of letting him waste away for a month until he was already weakened. 🙄
Hopefully, everything will be fine now.

They’ve definitely been messing with him for way too long now 🙄.

Oh, I almost forgot to ask—my mother-in-law remembered yesterday that she has a bottle in her fridge containing some sort of mixture of aloe vera, wine, honey, and who knows what else, which a woman gave to her about a month ago.
I was digging through some old threads and I know someone mentioned this before, even shared a recipe, but I can't recall how long something like that actually stays good.
If I remember correctly, it was supposed to help with immunity, appetite, and maybe even easing the side effects from chemo.
Does anyone happen to remember the details so I don't have to go hunting for them again?

I’ve got a massive 3-liter bottle of this stuff sitting right here at my place, but my old man wouldn't even touch it. Never wanted to try it, not once. From what I understand, it can last forever if you keep it right. A friend of mine actually inherited some from her dad, and she ended up using it after it had been sitting in the fridge for about a year and a half because her immune system was totally trashed. Everything turned out fine, though.

Look, Fiz, I wouldn't touch anything unless I knew exactly what was inside and how it might interact with any medication I'm already taking... I'd stick to probiotics, maybe some Beta Glucan to start, and some propolis to help ward off infections.

Hey everyone, I’m heading out to a dead zone without any internet access, so if you don't hear back from me immediately over the next few days, that's why. I'll try my best to hunt down a bit of signal here and there just to catch up on what's happening and get back to you.
Stay safe, everybody.

@Angela Wright/">@@Angela Wright, hope you're heading out on vacation. Enjoy it and get some rest!🙂

Hey everyone, I could really use some help if anyone has info—does anyone know if an oncologist in the US prescribes valganciclovir (Roche's Valcyte) for a glioblastoma diagnosis? If you happen to know, please shoot me a DM. Thanks so much in advance!

M

Lisa Lopez75 said:Guys, I really need some help here if anyone has info—does anyone know if any oncologist in America prescribes valganciclovir (Roche's Valcyte) when diagnosing glioblastoma? If you know, please shoot me a PM. Thanks so much in advance!

Any oncologist can prescribe it, provided there’s a medical indication for treatment. It's an antiviral medication used for viral infections—I believe CMV, which has been found in the tumor tissue of certain glioma patients and is thought to have some sort of causal link to the onset of the disease itself.

Fiz, what's the word on your end?

Linda Patel21 said:Fiz, how are things looking on your end?

I’d venture to say things are finally looking up. I had a chat with the doctor yesterday, and the outlook is improving. He also spoke with my father-in-law, advising him that he needs to keep moving by walking more often and sipping small amounts of water every hour, so he's strictly following that regimen now.
Today, my father-in-law actually managed to eat something substantial: some grits with milk this morning, and then mashed potatoes and vegetables for lunch—all quite smooth and easy to digest. 👋
I’m hesitant to celebrate too early, but if he keeps this up (so far, no vomiting or diarrhea), we might finally be able to transition him back to home care.

Fiz, I'm seriously glad things are finally looking up for you.

Linda Patel21 said:Zachary Howard2, I am honestly just relieved to see things finally starting to look up.

I might have jumped the gun a little too early. He started vomiting again, so they switched him back to liquid food yesterday.
The attending doctor mentioned yesterday that there aren't any physical obstructions preventing solid food, rather he just needs to learn how to manage that gag reflex, since they had to remove the specific muscle that controls it during his surgery.
It feels like every doctor I talk to gives me a different piece of information I haven't heard before.
Both the professor and this doctor also insisted that he needs to walk every hour and sit up more often instead of just lying there, but he isn't cooperating. He claims his back hurts when he sits up. Well, of course it hurts when he hasn't moved from a lying position for ages.

At this point, it seems like the issue is purely psychological.

Neither my mother-in-law nor I have any ideas left on how to handle this.

Does anyone have any actual, sensible advice? We feel like we're just spinning our wheels here.

Zachary Howard2, I honestly don't even know what to tell you. Maybe ask the hospital if they can get him a psychologist to talk to. When I was sick, talking to people who were actually going through the same thing saved me. They gave me advice that not a single doctor ever thought to mention because, let's face it, doctors haven't lived through it themselves.
I know it's tough when your father-in-law is stuck in the hospital, but maybe try calling a support group if there's one out there. If this is just a mental hurdle for him, that could really help. I know it from experience.

Fiz should get him a TENS unit so he can do some passive muscle training. Since his abdominal muscles are weak, that reflux is hitting him much harder. They really need to bring in physical therapy at the hospital. A physiotherapist could even come right to his ward to work with him and help build up his strength. If he’s finally cleared of the infection, I honestly think it would be best to discharge him home. That kind of move would be a massive psychological boost for him.

Angela Wright said:Maybe get him a TENS unit so he can passively work his muscles. Since his abdominal strength is weak, that reflux is becoming much more pronounced. They really should introduce physical therapy while he's at the hospital. A physiotherapist could even come directly to his ward to help him sit up and move. If he’s finally cleared of the infection, I honestly think discharging him home would be the best move. That transition would provide a much-needed psychological boost.

It feels like they are playing games with us regarding the bacteria he's carrying. The professor told me just the other day that it was urinary, but then today my father-in-law developed a fever, and the nurse who came by to give him a Voltaren injection claimed it wasn't urinary—yet they wouldn't say what it actually is.
My sister-in-law is losing her mind because she suspects it isn't pneumococcus and that there isn't pneumonia, even though they previously said everything was fine.
If nothing else, he managed to eat regular food today without vomiting.
On top of that, they are hitting him with two different types of antibiotics, yet they insist on spraying him with native propolis in the nose. We've decided to just give it to him in his yogurt tomorrow on our own authority, since my sister-in-law argues it won't do him any more harm than these antibiotics already are.

Who else are we supposed to turn to for truthful and complete information? I have a feeling they've botched things through sheer negligence and are now just doing whatever they can to cover their tracks.🙂
I'm already starting to second-guess whether I pushed too hard to get my father-in-law into surgery so quickly.🙄

I think it’s high time you started looking for a connection to switch over to Rebro.

Looking for some advice here.

My Grandfather is battling urinary tract cancer. Between his age (he's 87) and how much he's struggling right now, it's clear he’s nearing the end. He's drifting in and out of clarity, but he knows what's happening. He feels the end is close and has expressed that he just wants to go home to pass away.

We have immediate family and a nurse (who has plenty of palliative care experience) ready to look after him at home. We truly feel that being surrounded by loved ones is a much more humane way to go than dying in a sterile hospital setting.

The Doctor isn't keen on letting him leave because he currently has a fever and his overall condition is quite poor. Even the nurse who would be caring for him says we should follow the Doctor's lead.

My question is: can the family take responsibility and bring him home even if it goes against the Doctor's current stance? What kind of options do we actually have here?

It feels like a complete reversal of the usual situation—you know, where the hospital says there's nothing left to do and wants to discharge a patient, but the family fights to keep them in the hospital until the very end.

Thanks.

What’s the best way to mix in some Native propolis? My father-in-law finally started eating again and things are actually staying down (no vomiting), so I was wondering if we should try mixing the Native stuff into yogurt? I'm worried he might reject it because of the taste... honestly, sometimes I'd rather just 🙂
I mentioned it to my husband yesterday, and I’m planning to ask my father-in-law again today: is a nasty taste really worse than an extended stay in the hospital?
He still has a low-grade fever (around 99°F), but I’m hoping that clears up soon so he can finally head home after being stuck here for a month and a half.
That’s why getting this Native stuff into him is such a priority for me.

neonmoose3 said:Looking for some input here.

My Grandfather is battling urinary tract cancer. Between the disease and his advanced age (he's 87), combined with how frail he is, he’s basically reaching the end of the road. He’s lucid at times, aware of what's happening, feels like the end is near, and says he just wants to go home to pass away.

...

These are massive emotional, moral, and just plain internal battles you have to fight. We're actually part of that 'rare' group where the family specifically wanted to bring the patient home.

My dad was laid to rest yesterday. He died at home, surrounded by those who loved him most—he just peacefully drifted off. After all the unspeakable agony he went through, the kind of pain every sick person endures, he just fell asleep next to his wife, with whom he celebrated 50 years of marriage just a few months ago, and his two daughters. For the three of us, that’s the only comfort we have right now.

It could have gone totally differently. We brought him home from the hospital just the day before. He had severe kidney failure and spent a week in the ICU. Every single day, we begged the doctors to let us take him home, and every single day they told us he wouldn't even survive the trip. The moment the doctor said they were moving him to step-down care because his kidneys were functioning again—but there wasn't much else they could do—we took Dad home. The doctor suggested moving him to a regular ward just to make things "easier" for us. I don't even know what he thought would make it easier.

If Dad had died in the hospital, I honestly don't know if we would ever have forgiven ourselves. But then again, if we hadn't brought him in and let them do what they had to do there, we’d feel like we intentionally let him die, like we were performing passive euthanasia.

Choosing—essentially playing God—is one of the hardest things a human being ever has to do. We decided to work with the medical team and just hope Dad would make it home. And that’s exactly what happened.

On the flip side, someone might argue we just prolonged his suffering for those last ten days. But I know how much Dad loved us and how much he always cherished every moment spent together. Maybe his body was suffering, but for his soul, every second with us was pure medicine.

I don't think there's a universal answer to this. These are heavy, incredibly heavy decisions. From the start, we were in agreement that we wouldn't put Dad in the hospital unless he agreed to it or there was absolutely no other choice. That’s how it played out over these last six months. Seven trips to the ER due to acute kidney failure, and seven times we came back home with medical clearance.

And yeah, while we were fighting to bring him home, they told us we could sign paperwork taking full responsibility for him. It was a level of responsibility none of us three could truly shoulder. Because even when you see there's no hope left, you still find yourself hoping...