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

ruggedfox11 said:Look, I know it’s Easter and everyone has their own stuff going on right now, but...
I’m at my breaking point here. He keeps throwing a wrench in everything. One minute he refuses therapy, the next he claims he’s finished with it, then he’s just acting possessed, or spiraling into some dark, depressive hole. When he gets worked up—whether it's because the nausea from the treatment is driving him crazy after a session, or just general irritability before one—everything becomes an issue. Everything.
I honestly don't know how to handle him anymore. No matter which way I turn, I'm wrong. It feels like I can't get through to him, or like he isn't even grasping the reality of his illness—some days it’s like he just doesn't care. It’s pushing me to the edge where I just want to pack up and walk away.

How should I handle this?

The best move is to tell him that whatever he decides, you'll respect it, because you trust he's weighed all the consequences of his choice. He might tell you he's done with treatment, but believe me, fear usually runs deeper than stubbornness.
Don't beat yourself up over the setbacks. Just stay quiet, keep your head down, and keep moving forward.

Angela Wright said:Position yourself so that you can tell him you'll respect whatever he decides—you’ll stand by him because you trust he’s weighed all the consequences of his choice. He might tell you he’s done for good, but believe me, fear is a much stronger motivator than pure stubbornness.
Don't stress too much about things falling through. Just stay quiet and keep swimming your own way.

It honestly never even crossed my mind that fear could be a bigger factor than just being stubborn.

Unfortunately, for some people, stubbornness often outweighs fear. That was always my way, and it was exactly how my dad was. I really believe that taking an individual, calm approach is the secret to getting through this. I spent so much time explaining the "why" behind every treatment and decision to him. He was incredibly positive and brave, always focusing more on our well-being than his own, even when we were entirely consumed by his health until the very end. Throughout his illness, he was such a gentle soul, never once lashing out.
Anyway, whenever he reached his limit or just didn't want to deal with something... it was like dealing with a small child. I’d just sit there, patiently explaining over and over why certain things mattered and how they helped.
And if he truly decided he didn't want to pursue a specific treatment or path, we were going to back him up completely. We were right there by his side, and we weren't going anywhere.

On the days when he felt good, I wanted time to just freeze. Even though I have kids of my own, and I know it might sound heavy, I would have happily lived in those moments forever just to have him here and feeling okay—like one of those scenes in a movie where a single perfect day lasts an eternity. Reading Angela Wright's signature brought back a memory; it was summer, and I remember thinking how wonderful it would be if we were just at the beach, carefree like everyone else, just like life was before the diagnosis. I actually wondered for a split second if I'd rather be somewhere else, but then I looked at him, and there wasn't a single place in the world I would have rather been than right there in that moment. I preferred my own heartache over all the happiness in the world if it meant being with him.

Stay strong and keep fighting because there’s no other way. I truly wish you nothing but the best as you navigate this terrible disease.
Happy Easter.

Elizabeth Moore4 said:Unfortunately, for some people, pure stubbornness outweighs fear. That was my dad, and that’s how I am too. I think the key is a calm, individualized approach. I used to sit with my dad and patiently explain the "why" behind every treatment or decision. He was incredibly positive, brave, and stayed focused on us instead of himself—even when we were entirely consumed by his needs until the very end. During the illness, he was actually quite gentle, without those big outbursts you sometimes see.
Anyway, whenever he hit a wall or just had enough... it was like dealing with a child. Just endless, patient explanations about why things mattered and how they worked, blah blah blah.
And if he truly decided he didn't want a certain treatment, we supported that choice. We stood by him, period. No moving an inch.

On the days when he felt good, I wanted that moment to freeze forever. Even though I have kids of my own, and I know that might sound heavy, I would have traded everything just to have that one good day stay permanent, like in the movies. Reading Jane's signature brought back a memory—it was summer, and I remember thinking how amazing it would be if we were just at the beach, carefree like everyone else, exactly how life was before the sickness. I wondered for a split second if I'd rather be anywhere else, but then I looked at him, and there wasn't a single place on Earth I'd rather be than right there in that moment. My own heartache felt sweeter than all the happiness in the world because I was with him.

Stay strong and keep fighting because there's no other way. I truly wish you nothing but strength in the battle against this horrible disease.
Happy Easter.

My mom was a stubborn one too. In the end, it turned out she was just dumping her frustrations on us, knowing full well how much we cared. I found myself caught in that cycle of guilt and stress, only to gear up and head to my next appointment dutifully, without question—because she knew deep down she’d already exhausted the alternative options and conventional medicine was the last line of defense. There isn't really such a thing as "just giving up," because in this fight, there is no passing grade.
You just have to sit there and say, "This is how it is." Period. End of story. I'm still here, supporting whatever is decided. But you also have to protect yourself. We aren't inexhaustible resources.

What can you say? Everyone handles things differently, and honestly, it’s a brutal test for anyone going through it.
The truth is, you really have to look out for yourself, but unfortunately, that's just not how I'm wired. In the middle of all that pain and heartache, I was ready to just swap places with him and go as far as necessary to make things right. Even he wasn't looking out for himself, and I truly believe that's why everything spiraled the way it did.
At the end of the day, men and women really are built differently, and there's no denying that.

Elizabeth Moore4 said:What can you do? Everyone handles things differently, and it’s a brutal test for everyone involved.
The truth is, you have to look out for yourself, but unfortunately, I wasn't wired that way. In the middle of all that pain and grief, I was ready to step in and take his place, to go as far as necessary. He didn't protect himself either, and I honestly believe that's exactly why everything fell apart the way it did.
And let's be real—men and women are fundamentally different, there's no denying that.

But that’s exactly the point. There is no substitute. At the end of the day, everyone carries their own crisis alone. We can help by supporting them through certain aspects of it—which means we end up absorbing their outbursts and dealing with their moods—we can offer encouragement through our words or just by being there, staying silent and present. But when the talking stops, everyone is ultimately carrying their own weight. You have to keep that in mind and stay rational, even when the emotions are hitting you like a freight train. Some sacrifices, no matter how much they are born out of love, are just useless and toxic. Every single person owes themselves a certain dose of selfishness. Looking back now with some distance and experience, I see that more clearly than ever.

Could anyone recommend an oncologist at Osijek University Hospital? I don't really know anyone there, so I'd love to hear about your experiences if you have any. The doctor who referred me mentioned abdominal oncology, so if that helps narrow down the search, please let me know.

steelbadger22 said:Can anyone recommend an oncologist at Osijek University Hospital? I’m completely in the dark here and don't know where to start. The doctor who referred me mentioned abdominal oncology, so if that helps narrow down the search, please let me know.

If you want my honest advice, try to avoid the oncology department in Osijek entirely if you can swing it. Head over to a major center like the Mayo Clinic or even just somewhere in a big city like Chicago or New York—ideally, you want the top-tier specialists. Honestly, everyone I've seen posting from the Osijek area hasn't had much to say about the care there, and frankly, I don't blame them.

I need two pieces of information for an oncology patient:

- besides the main American hospice, where else can we source a hospital bed without waiting a month—time is precious and every single day counts.

- how does home nursing work here—is it handled through a primary care physician, or are there specific organizations or private options available?

Thanks in advance for your help.

brisksurfer5 said:I need two pieces of information for an oncology patient:

- Besides the main American hospice, where else can I get a hospital bed without waiting a month? Time is precious, and every single day counts.

- How does home nursing work here? Is it handled through a primary care physician, or are there specific associations or private options available?

Thanks in advance for any help.

You can rent beds from private facilities or state institutions that offer inpatient accommodations for a monthly fee (roughly around $133 more or less). They usually have them in stock.
You should also check with the local health department or insurance provider to see if you can arrange it via a promissory note or a credit agreement. I believe those options are available now.
The local medical office submits a proposal for home health nursing, which Medicare then approves. With a cancer diagnosis and a patient who is immobile or has limited mobility, you’re entitled to full field nursing seven days a week, with sessions lasting about 45 minutes each. First, a visiting nurse comes by (usually once a month or as needed, leaving their number to stay in constant contact with the field nurse), and they issue the orders to the field nurse. Think of the visiting nurse as the intermediary between the doctor and the patient. Essentially, the field nurse relays everything to the visiting nurse, and the visiting nurse passes all the info and needs back to the doctor.

It’s been a little while since I last checked in. There isn't much to report, really, other than the fact that as Dad’s physical health starts looking up, his mental state is taking a massive dive. It is honestly staggering how negative he can be. It's almost as if he wakes up every single day with a personal mission to find some new reason to believe there’s absolutely no hope left for him. Of course, he’s still dead certain that I’m lying to him about his diagnosis, mostly because I can't give him a definitive roadmap of what happens after he finishes these four cycles of Chemo. In his mind, if the doctor says the exact same thing, then we're clearly just conspiring together to feed him lies. I’m at a total loss for how to lift his spirits anymore... I can't even begin to imagine what it feels like to be in his shoes, but I’m terrified that with this attitude, he isn't going to make it very far, and that thought is just haunting me.

steelbadger22 said:Could anyone suggest an oncologist over at Osijek University Hospital? I’m totally flying blind here and don't know anyone, so if you've had any experience, please let me know. The doctor who referred me mentioned abdominal oncology, so if that helps narrow down the recommendation, there you go.

If you're looking at Osijek University Hospital, Dr. Labudovic is definitely the way to go when it comes to oncologists.

There's also a younger colleague there who does really solid work too.

Just a heads-up though—from what I've heard lately, their radiotherapy equipment has been out of commission, so they've been sending patients over to places like Chicago University Hospital instead.

Robin Diaz4 said:I haven't checked in for a while. Nothing much has changed, though time seems to be moving strangely. Physically, my dad is doing better, but mentally? He’s spiraling. It's incredible how negative one person can be. It's almost as if he wakes up every single day with a personal mission to find a reason why there's no hope left for him. Of course, he still insists I'm lying about his diagnosis because I can't predict exactly what will happen once he finishes these four rounds of Chemo. If his doctor tells him the same thing, then apparently we're all in a conspiracy together just to deceive him. I've run out of ways to lift his spirits... I can't even begin to fathom what it's like to be in his shoes, but I'm terrified that with this attitude, he won't make it far. And that thought haunts me.

Ugh... I'm so sorry... I have a friend who's been dealing with a mother exactly like that for years... Hang in there, everyone. Don't let his negativity pull you down with him.🙂

brisksurfer5 said:I am looking for two pieces of information regarding an oncology patient:

- Aside from the main national hospice, where else can one acquire a hospital bed without waiting a month? Time is precious, and every single day counts.

- How does home nursing work here? Is it handled through a primary care physician, or are there specific associations or private services available?

Thank you for your help.

We managed to get a bed through Catholic Charities. They always seem to have one available. There is no cost involved, and you simply return it once it is no longer needed. We just had to provide a type of verification from our local priest, which was no trouble at all.
As for nursing, we have someone visiting five times a week based on our doctor's recommendation.

I would also appreciate any recommendations for an oncologist at the Mayo Clinic.

It’s been quite a while since I last posted anything here...
Things are holding up okay on our end—his nausea from the chemo finally started to let up yesterday, which was such a relief.
We’re feeling a bit of a chill lately, though—the wind has really started picking up out here.

On another note, does anyone happen to know if a husband who is both an oncology patient and a veteran might be eligible for any kind of one-time financial assistance?

ruggedfox11 said:It’s been quite a while since I’ve actually sat down to write anything around here.
Things are looking up on our end; his nausea from the chemo finally started to subside yesterday.
It’s getting a bit chilly out there today; the wind is starting to pick up quite a bit.

Does anyone happen to know if a husband who is both an oncology patient and a veteran is eligible for any kind of one-time financial assistance?

We’ve already received our one-time payment. If you're looking to claim yours, you'll need to get in touch with the Department of Veterans Affairs and submit all the necessary paperwork. Just keep in mind that the amount depends on your household income and how many people are in your family.

Does anyone here have any firsthand experience with the long-term care facility over in Boise?
My father has contracted a strain of bacteria that’s proving to be quite resistant to standard antibiotics. The pulmonologist was incredibly firm about this—she insisted he stay hospitalized until he is completely cleared, because if we bring that infection home, the rest of the family is at serious risk too.
I’ve heard people whispering that this hospital is basically the final stop before the end—that it’s where you go when there's nothing left to try. They told me they’d only keep him there for a month at most before discharging him back home. Honestly, I don't even know what to make of any of this.

I find myself checking in on this thread every single day, though I haven't had much to contribute lately. As for my father, his condition remains steady; the doctors managed to clear up the pulmonary embolism, so there are no more blood clots to worry about.

I really need some advice here—my mom has mesothelioma. She had her regular chemo session this past Friday and went in for a General Electric scan on Tuesday. Then, two nights ago, she started vomiting and lost consciousness and her sense of orientation. We ended up at the ER, but they just sent her home, claiming it was mostly just a reaction to one of the drugs. She’s somewhat coming around now, but she still can't remember even the simplest things or words, and she sounds incoherent at times. On top of that, she used to be able to get out of bed on her own, but now she just can't.
Is this just a temporary phase from the meds, or should we be pushing for more tests? Or are we looking at the final stages?
Thanks!

Grace Ross20 said:We received a one-time payment—you just have to reach out to the Department of Veterans Affairs and submit all the necessary paperwork. It really depends on your income level and how many people are in your household.

Does anyone happen to know what the experience is like at the long-term care facility in Boise?
My dad picked up a bacterial infection that’s proving to be pretty resistant to antibiotics—so stubborn, actually—and the pulmonologist insisted he stay there until it's completely cleared up before they'll let him come home. We're worried about catching it ourselves, too.
I’ve heard some pretty grim rumors that the facility is basically where you go when things are terminal... they told us he’d likely stay for a maximum of a month before being discharged. Honestly, I don't even know how to process that.

Anyway, I've been reading through your posts every single day, though I haven't had much to contribute lately—things are still pretty much status quo with Dad. They did manage to clear the pulmonary embolism, though, so thankfully there aren't any more blood clots.

Thanks, I managed to get a hold of them, and they gave me the list of documents I need to gather.

Carol Reed19 said:I’m desperately looking for some advice here—my mother has mesothelioma. She had her regular chemo session this past Friday and went in for a General Electric scan on Tuesday. Two nights ago, she started vomiting and lost consciousness along with her sense of orientation. We ended up in the ER, but they sent her home, essentially claiming it was just a reaction to one of the medications. She’s somewhat regained her senses, but she still can't remember even the simplest things or words, and at times, she isn't making any sense at all. Until recently, she could get out of bed on her own, but now she can't.
Is this just a temporary phase caused by the drugs, or should we be pushing for more tests? Are we looking at the final stages?
Thanks!

It is entirely possible that’s what’s happening. My dad hasn't dealt with nausea so far, but during his last two sessions following chemo, he looks and acts like he’s completely intoxicated. He doesn't lose consciousness, per se, but he’s certainly not himself; he'll ask me something and then five minutes later, he's asking the exact same thing again. I truly believe it’s all temporary. Usually, about two or three days after the chemo, he settles back into his normal self.
My dad struggles with anemia constantly, so I suspect that plays a role in the confusion as well.

I don't have any profound medical wisdom to offer, so I'll just send my best wishes and strength to you all!

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Robin Diaz4 said:It could be that way. My dad hasn't had much nausea so far, but the last two times after chemo, he looks and acts like he’s totally wasted. He isn't passing out or anything, but he's definitely not himself—he'll ask me something and then five minutes later, he's asking the exact same thing again... I'm pretty sure it's just temporary. Usually, about 2-3 days after chemo, he's back to his normal self.
My dad deals with anemia all the time too, so I bet that's playing a part in it.

I don't have any expert advice to give, so I'm just sending big hugs and good vibes to everyone!

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Thanks, that actually helps a bit. She's been going through weekly chemo for over two months now, and this is the first time anything like this has happened.
We'll just have to see how things go. I'm honestly a little scared it might have spread to her brain, but wouldn't the scans show that?