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

Svekar ended up on hemodialysis; his urea and creatinine levels started spiking over the last two days (hitting 570, though I'm not sure what the normal range even is), so they rushed him to the Mayo Clinic today.
Some young doctor—who was actually quite pleasant and talkative, by some miracle of God—explained that his kidney function was compromised by the antibiotics he was given for a hospital-acquired infection (finally identified as strep). Apparently, certain medications can take a toll on the kidneys after a while and trigger acute renal failure.
He has to undergo dialysis for the next three days, after which they’ll re-run his labs. This whole situation has nothing to do with mental health; it's purely the result of negligence and poor management. That bacterial infection had been causing high fevers, too. They've cleared the infection now, but his kidneys are absolutely trashed.
My sister-in-law said she’s bringing him home next week because she’s reached her limit, and then she plans to take him to the ER and move him to another hospital.
Just when he finally started eating again and we managed to lift his spirits a little yesterday, these new problems crop up.

I am really kicking myself for sending him to Jordan. Why did I get involved instead of just letting nature take its course? Now, instead of things turning out better, everything has gone south.

His doctor is on duty tomorrow, so I’ll head in to see what he has to say about all of this.

Zachary Howard2, don't beat yourself up. I know how you feel, but you seriously meant well. You know as well as I do that with this kind of illness, anything can go wrong. It's the same for me—I'm constantly thinking about what I missed or if there was something else we could have done... it's an endless cycle of "what ifs." I really believe it if they told you at the Mayo Clinic that dialysis will fix things. Your intentions were pure, and honestly, who knows? If he hadn't had surgery, maybe everything would have just metastasized and been way worse. Hoping to hear some better news from you soon.

Is it actually possible to switch oncologists? And if so, what’s the move?

goldencrane3 said:Is it actually possible to switch oncologists, and if so, how do I go about it?

Technically, sure. In reality? It’s an uphill battle. When you're already established within one hospital system, trying to jump to another is a nightmare, let alone trying to find a different doctor within the same facility—it's practically impossible. Most other hospitals will just brush you off, essentially telling you, "You aren't our patient, go back to yours." It almost always boils down to the bottom line; they don't want to deal with the billing or the paperwork. Unless you have some heavy-duty connections, getting them to take you in is a massive stretch.

First time posting here... unfortunately. My dad was diagnosed with small cell lung cancer. We actually found out because we paid for a private MRI of his lumbar spine—just trying to figure out why his lower back was killing him—and what we found was a total shock. He spent a month in the hospital dealing with tests that moved at a snail's pace. Even though this type of cancer usually jumps to the brain or bones, they kept focusing on his lungs, chest, and abdomen... they didn't even bother with head scans or a full skeletal survey. Since he opted out of chemo and radiation, they sent him home to manage things. Fast forward three months, and he’s right back in the same hospital via the ER, all because symptoms suggested the disease had spread to his abdomen. They scanned his abdomen and pelvis and concluded the metastases had reached his pelvic bones. He's hospitalized again. By the second day in, he starts losing track of things—trying to get out of bed without realizing where he is or how sick he actually is. It's screaming brain metastasis. On the fourth day, he has an epileptic seizure and breaks his upper arm in multiple places. They rushed him from the hospital to the ER, where a brain CT showed a lesion. Looking back at the pelvic CT from four days ago, they also figured out there's likely a spontaneous hip fracture. The ER staff is baffled as to why the hospital didn't run a single proper test during those first four days—aside from basic bloodwork. Now he's in the ICU, and it's been three days of them stalling on surgery because they aren't sure if he can survive it given the underlying illness. They told us they aren't sure what to do next. Look, I get it's a tough case and the risks are massive, but this whole thing feels like a disaster... just way too many oversights and sheer negligence that have left someone suffering immensely. It didn't have to be this way. Maybe I'm just being emotional and biased... but has anyone dealt with something similar? What should we do? Is there any way to take action or file a complaint? It won't help my dad much at this point, but maybe it'll stop it from happening to someone else. Thanks in advance.

Honestly, since Dad refused oncology treatment, it’s hardly a surprise he’s dealing with so many fractures—it's most likely due to bone metastases. The doctors didn't see any point in running more diagnostics since he made it clear he wasn't interested in pursuing treatment.
To be blunt, it looks like Dad is in the terminal stage, and unfortunately, the end is approaching. At this point, the best thing for him is palliative care to ensure he remains comfortable and pain-free, stays hydrated, nourished, and surrounded by his loved ones. Major surgeries aren't an option anymore; maybe just minor procedures if they can actually provide some relief.
I’m sorry, but that's just how things stand. Stay strong and be proud of him.

Things are proceeding exactly as expected over here—which is to say, nothing much has changed.
The doctor sat me down the other day and explained that the surgery was purely palliative. The goal isn't a cure; it’s simply to allow my father-in-law to eat through his mouth rather than via a feeding tube, just to make the remainder of his life a bit more bearable.
He also mentioned that with esophageal cancer, chemotherapy doesn't really elicit a response; at worst, it might just trigger further spreading, though the oncologist will make the final call on that.
They removed about 40 lymph nodes, and roughly 80% of them came back positive.
Given that he’s been doing this job for 28 years, the doctor remarked that in his experience, nobody in the family ever says anything particularly kind about these situations, and honestly, he’d much rather not be doing this anymore.
Out of the 200 esophagus cases diagnosed annually, only about 40 even end up on the operating table, and of those, only 20 actually undergo surgery; the rest are just exploratory.
My father-in-law is still on dialysis. His kidneys are struggling because of the antibiotics he was given for strep while in the hospital, and there was a scare where sepsis started to set in.
On top of all that, I suggested to him that he was being neglected, and he snapped back that they *had* neglected him—that they would have just sent him home and stopped caring altogether—and if I’m being honest, I partially agree.

He’s managing to eat somewhat now, but he seems to reject everything I give him to boost his immunity; whether it’s Sanostol syrup, Native propolis, or juice made from beets, carrots, and apples... God forgive me, but I have a nagging feeling he’s making excuses. It likely just causes him heartburn or he finds the taste unpleasant, and since he’s depressed, he clearly has no desire to take anything that might actually make him feel better. 🙄

Does anyone have any advice on what else I might be able to give him to help strengthen his constitution?

@Zachary Howard2

I don't have any specific advice on what else you should be giving him. What you're doing right now is perfectly fine...
I think the focus needs to shift toward mental health—trying to actually lift his spirits.
For some people, though, that’s an impossible mission. I don't know your father-in-law, so I have no clue how you'll even attempt to cheer him up.
With my dad, talking to a hospital psychologist helped for a little while.
It's all just incredibly tough.
I'm sorry...

stormyfox19 said:@Zachary Howard2

I honestly don't have any more advice to offer regarding what else you should be giving him. What you’re currently providing seems perfectly fine.
I suspect the focus really needs to shift toward bolstering his mental health—essentially trying to lift his spirits.
Now, for some people, that turns out to be an impossible mission. I don't know your father-in-law personally, so I have no idea what kind of approach might actually work to cheer him up.
In my own father's case, talking things through with a hospital psychologist helped for a while.
It’s just a lot to handle all at once.
I'm truly sorry.

The issue is that everything we give him just doesn't sit right... I need something either with a neutral flavor or perhaps something specifically for immune support.
We did manage to give him a little psychological boost, but every time one thing starts looking up, something else goes sideways, and we find ourselves right back at square one.

Amanda Miller69 said:The issue is he just won't touch it.... I need something with a neutral taste or I don't even know what else works for boosting immunity.
We managed to get his spirits up for a little bit, but as soon as one thing starts looking okay, something else goes sideways and we're right back at square one.

Give this a shot—it requires a prescription, but you'll need a recommendation from an oncology specialist first.

https://www.google.com/search?q=suppo...h=631#imgdii=_

My dear friend passed away earlier this morning 🙂

Jamie Jones8 said:My friend passed away this morning 🙂

My sincerest condolences 😢.
She has moved on to a much better, more beautiful place, free from all pain and suffering.

Robin Gray8 said:Give this a shot; it requires a prescription, but you’ll need a recommendation from an oncology specialist first.

https://www.google.com/search?q=suppo...h=631#imgdii=_

He's already getting something similar at the hospital (I think it's called Pulmukan or something along those lines).
I would love to get him a proper immunobuster, but honestly, neither I, nor my husband, nor my sister-in-law have the slightest clue what we're doing. Every time we try to navigate this, we just hit a brick wall instead of finding a way forward.

Jamie Jones8, I am so incredibly sorry. My heart goes out to you.

I feel for Marica 😢

Fiz, I was just thinking about Biogai. They're those probiotic drops used for kids. It might actually work. Personally, I’ve tried them, and they taste pretty nasty, especially if you mix them into water, tea, or juice.

I’m so incredibly sorry, Jamie Jones8. 😢

My dad hasn't eaten anything that even resembles food for three days now—not even water. He spends most of his time sleeping, or maybe it’s some kind of semi-conscious state, I honestly don't know what to call it; his eyes are mostly closed, or just half-open at most. He tries to say things here and there, but we can barely make out what he’s saying. And the moment we try to give him even a tiny spoonful of water, he just presses his lips tight shut. His breathing is very shallow, and he coughs occasionally—well, more like he *tries* to cough, but he just doesn't have the strength left for it. A few days ago, his doctor told us that an IV wouldn't be the answer because the swelling around his liver is already so significant, and she’s worried all that fluid will just end up right there and essentially suffocate him. 😢 😢 😢

It's just so heartbreaking, such a terrible thing for him to go through, but at least he's home and we're all here with him. I feel like I'm just operating on autopilot, constantly checking to make sure I haven't missed anything important... when really, we're feeling completely helpless. 😢

Apply an ice cube to his lips... honey, stay strong, because by all accounts, this truly is the day 😢 May the Almighty grant you strength and help you keep peace in your hearts. Hang in there 🙂

Thanks, Angela Wright. We're going to try using an ice cube—fingers crossed that at least that does the trick, just to get him a little bit of hydration...😢

Thanks everyone... she fell into a coma, and she hasn't even been able to eat or drink anything for seven days now.😢😢 My goodness, I am just praying this illness goes away...

Edward Grant3, I truly feel for you all, because everything you've shared really reminds me of my grandmother's final days when she was battling pancreatic cancer.😢 😢
I hope God gives you all the strength you need to get through this; we were trying to moisten her lips with a little cloth... though we weren't very successful... she just kept looking at us, or maybe looking right through us...