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

My uncle at the Jordanovac location (or what they're calling Rebro Hospital now) can't even land a slot for a basic initial consultation. This is wild, considering he actually had his surgery scheduled just two weeks ago. 😢

granitepanther45 said:Hi,

My dad was scheduled for chemo at the Jordanovac clinic on April 8th. We finally managed to get a hold of a floor nurse over the phone, and she told us that the chemo sessions are actually being moved over to Rebro Hospital (it's on the 1st floor, green building), but we just have to wait for them to call us with an appointment time. That was a week ago, and honestly, nobody has called us back yet.
On top of that, she couldn't even tell us who would be managing his care now, since our usual pulmonologist got transferred over to the ICU at Rebro.
Apparently, they've been redistributing all the doctors from the Jordanovac clinic to other hospitals.

Does anyone happen to know if the pulmonologists at Rebro are going to take over the patients from Jordanovac?

Thanks everyone for any info you can share.

Word is they’re moving things back to Jordanovac next Monday. I'm not sure if I should even post a phone number here, but those were the Jordanovac numbers that got rerouted to Rebro after the earthquake hit. Seriously, just call every single day and pester them. Be annoying. Be persistent. Literally don't stop until they answer.

Robin Diaz4 said:My uncle at the Jordanovac location (or Rebro Hospital now) can't even get an appointment for an initial exam. He actually had surgery scheduled just two weeks ago. 😢

Maybe try asking around—if he was set for surgery two weeks ago, they mentioned some procedures might be moved to other hospitals, maybe somewhere near Zabok.

Does anyone have their liver cancer results handy that they could share with me?

Can a single post actually make a difference in the fight against cancer?
https://www.oncology.net/post/mo%C...otiv-karcinoma

How oncology patients are being scammed—Vitamin B17 (amygdalin) doesn't cure cancer, nor is it actually a vitamin at all.

https://www.onkologija.net/post/kako...C4%87e-vitamin

Unfortunately, it’s only when someone close to you falls ill that you realize just how much people are being misled by those who are willing to try absolutely anything out of sheer desperation.
Vitamin B17, baking soda, iodine, graviola—I could go on forever... (and while maybe one of those things offers some minor benefit, let's be clear: they aren't cures).
On the recommendation of a friend, we actually had this so-called "healer" come to visit us. Honestly, I wouldn't have even let the man through my front door, but initially, I thought he might be a nutritionist who could actually offer something useful. However, once he started rambling about these "special" (and I use that word loosely, bordering on magical) powders that only *he* can source—claiming he wasn't even making a profit and just wanted us to reimburse him what he paid, which was $2333—I was nearly moved to tears.
What broke me most, though, was seeing that momentary glint in my father's eyes; for a split second, he actually believed that this idiot could truly help him.
To be perfectly honest, I pushed everything regarding him aside and I've actually forgotten his name, but if I hadn't, I would have reported him in a heartbeat. He even had the audacity to brag about how he's "saved" countless people from undergoing chemotherapy.

Maybe someone will argue that this doesn't belong on this specific thread, but I believe I'm doing a service to patients by warning them about these scammers. Believe me, they tend to swarm around you very quickly.

Hi everyone,

My dad had surgery for lung cancer, and he’s already finished his rounds of adjuvant chemotherapy at the hospital in Jordanovac. Now, he’s gearing up for radiation therapy, which should last about 4 to 5 weeks.
Since he doesn't actually live in Chicago, I was wondering if anyone here has experience with this—or maybe knows—if he could just do the radiation locally in a city much closer to home for him (specifically, somewhere like Seattle)?
He would still travel back to Chicago for all his other checkups and follow-up appointments.

I hope this doesn't come off like I'm trying to take the easy way out—he's been staying in Chicago for treatment for five months now, and he really just wants to be back home.😢
On the flip side, I'm a little worried that if he starts his radiation in a different city, they might be reluctant to take him back for his follow-ups in Chicago—especially since he's been so happy with the doctors who have been treating him so far.

Thanks so much in advance for any info you can share...🙏

I really hope they can hang in there through this last round of radiation, especially after everything they've already powered through in Chicago. I went through my own radiation treatments at the Jordanovac location, even though I'm not from the area at all. I managed to figure out a place to stay and got it all done...

Robin Diaz4 said:It’s heartbreaking. When someone close to you gets sick, you realize just how much people can be misled when they're acting out of pure desperation.
Whether it's Vitamin B17, baking soda, iodine, graviola—you name it. Maybe some of it offers minor support, but let's be clear: none of it is a cure.
A friend actually recommended this "healer" to us. Honestly, I wouldn't have even let him through my front door, but at first, I thought he might be a nutritionist who could offer some helpful guidance. But then he started talking about these special—well, let's call them "magical"—powders that supposedly only he could source. He wasn't asking for much, just that we reimburse him for what he paid, which was $2333. I was honestly moved to tears.
The hardest part was seeing that momentary glint in my dad's eyes—that brief flash of hope where he actually believed this idiot could truly help him.
To be honest, I pushed everything aside and I can't even remember his name now, but if I could, I'd report him in a heartbeat. He even had the nerve to brag about how he’s helped countless people skip chemotherapy.

Some might say this doesn't belong on this specific thread, but I feel like I'm doing a service to patients by warning them about these scammers. Believe me, they tend to swarm around you very quickly.

That is such a terrible story. What fascinates me about these types is how they can live with themselves while doing this. You're essentially feeding false hope to someone who is seriously ill, and then you strip them of their resources on the way out. I'm speechless.

granitepanther45 said:Hi everyone,

My dad had surgery for lung cancer, and he’s already finished his adjuvant chemotherapy at the hospital in Jordanovac. Now, he’s scheduled for radiation therapy, which should last about 4 to 5 weeks.
Since my dad doesn't live in Chicago, I was wondering if anyone has experience with this or knows if he could just do the radiation locally in a city closer to home (specifically, Seattle)?
He would still travel back to Chicago for all his other follow-up appointments and checkups.

I apologize if this sounds like we're trying to take the easy way out; Dad has been in Chicago for treatment for five months now, and he just really wants to head back home.😢
On the flip side, I'm worried that if he starts his radiation in a different city, they might not want to take him back for his regular checkups in Chicago, and he’s honestly been so happy with the doctors who have treated him so far.

Thanks so much in advance for any info you can share...🙏

Of course, he can absolutely do it in Seattle. Given the circumstances, I think the team at Jordanovac would be perfectly fine with that too. I don't see any reason why they wouldn't accept him for follow-ups, provided everything is communicated clearly with them.
However, there's another factor to consider: if you switch locations now, the whole process essentially resets from scratch. He’d likely face a much longer wait in Seattle before the radiation actually begins, so personally, I wouldn't recommend changing anything right now.

Angela Wright said:Honestly, nobody can say for sure. Maybe a doctor can give an estimate, but even then, there’s no guarantee. It all comes down to immunity, general condition, mental state... those are all variables that play a role. Generally speaking, once the liver starts failing and the body begins retaining fluid, we're talking about a matter of weeks.

Hi everyone
I've been lurking on this forum for a long time, but I'm finally posting because that comment above really hit home.
Back in July 2019, my mom was diagnosed with lung cancer, a 9x6 cm tumor with three spots on her liver—the largest being 2.5 cm.
After four rounds of cisplatin plus pemetrexed, the tumor shrank to 6x4, and the liver spots looked more like lesions. However, she could only handle one more dose of cisplatin because her kidneys were struggling. Around New Year's, she was actually doing okay—she was walking 1.9 miles a day, eating well, and had lost some weight, which actually seemed good for her. She was doing alright.
At the start of the year, she got two more chemo sessions, just pemetrexed, but the decline started fast. By February, she couldn't lift her legs; she couldn't walk. In March, a PET scan showed the tumor had grown to 12 cm, and the spots on her liver were multiple, with the largest reaching 10 cm.

Mom came to stay with us then, and she hasn't left since. In the meantime, she received one immunotherapy session, but she missed the next one scheduled three weeks ago because her liver enzymes are absolutely terrible. They're off the charts.
Mom just lies there now. Every third day, she spends the entire day vomiting, so she'll have one day where she recovers a bit and manages to eat a little. Barely making it to the bathroom. Hospice came by yesterday to give her IV fluids, and the palliative care team is coming on Monday. Someone has already been coming once a week for a while just to help bathe her. At first, Mom struggled to walk, then she used a cane, then a walker... but everything seems to get worse after just three days. What worries me most is that her abdomen is getting larger every single day, even though she takes tablets for dehydration, her legs are swollen, and she became completely non-verbal three days ago. She mumbles things, but I have no idea what she's saying. Even she knows she's talking nonsense, which frustrates her because she can't express what she wants to say. She can't even find or read a text message anymore. This all started three days ago, and it feels like it's getting worse every day.
We're supposed to go for a PET scan this Monday, so I arranged medical transport. Today, Mom says she doesn't want to go. I know she has the right to refuse—honestly, why do we even care about the PET scan or the results? It's clear to us that there isn't much therapy left for her... Hospice told me they'd never force their own mother to do this, and I appreciate their honesty, but how do you just give up? When do you stop?
And then I stumble upon that post above, saying once the liver goes, it's just a matter of weeks.

What do you all think? Has anyone else been in this situation? Should we do the PET scan—yes or no? After the scan, Mom will be so exhausted she'll likely spend the whole next day vomiting.

Donna Reyes11 said:Hi everyone
I’ve been following this forum for a long time, but I’m finally reaching out because the post above really hit home.
My mom was diagnosed with lung cancer back in July 2019—a 9x6 cm tumor with three spots on her liver, the largest being 2.5 cm.
After four rounds of cisplatin plus pemetrexed, the tumor shrank down to 6x4, and those liver spots looked more like minor lesions. However, she could only handle one more dose of cisplatin because her kidney function started failing. Around New Year's, Mom seemed to be doing okay—she was walking 1.9 miles a day, eating, and had lost some weight, which actually looked healthy for her; things felt relatively stable,
But at the start of the year, she received two more immunotherapy sessions (just pemetrexed), and then everything started crashing fast. By February, she couldn't even lift her legs and stopped walking. In March, a PET scan showed the tumor had grown to 12 cm, and the liver spots were widespread, with the largest hitting 10 cm.

Mom came to stay with us then, and she hasn't left our side since. In the meantime, she had one immunotherapy session, but she missed the next one scheduled three weeks ago because her liver enzymes are just through the roof. They are right on the edge.
Mom is mostly bedridden now. Every third day, she spends the entire day vomiting; there are days when she recovers enough to eat a little, and then there are the bad ones. She can barely make it to the bathroom. Hospice arrived yesterday to start her IV fluids, and palliative care is coming on Monday. We also have someone coming once a week to help bathe her. At first, she struggled to walk, then she used a cane, then a walker... but after just three days, everything becomes a struggle again. What’s really worrying me is that her abdomen is getting larger every single day, even though she takes medication for dehydration, her legs are swollen, and three days ago, Mom became completely disoriented. She’s mumbling things that don't make sense. She even knows she's talking nonsense, which frustrates her because she can't find the words she wants to say. She can't even figure out how to find or read a text message anymore. This all started three days ago, and it seems to get worse every day.
We are supposed to go for a PET scan this Monday, and I've already arranged transportation. Today, Mom told me she doesn't want to go. I know she has the right to refuse; honestly, what difference does a PET scan or the results make? It’s clear to us that there are no more curative treatments left for her... the hospice worker told me that since she's her mother, she wouldn't force her, and I'm grateful for that honesty, but how do you just give up? When is it time to stop?
And then I come across this post above mentioning that when the liver starts going, it's a matter of weeks.

What do you all think? Has anyone been in this situation? Should we do the PET scan—yes or no? I know that after the scan, Mom will be so exhausted she’ll probably spend the whole next day vomiting.

Unfortunately, based on what you've described, it sounds like the liver is slowly losing its ability to function. This leads to things like fluid buildup in the abdomen due to low protein levels, which then spills over into swelling in the legs, along with everything else. As for the confusion and incoherent speech, that can also be a result of declining liver function, or it's possible the disease has spread to the brain. In any case, given the overall picture, I wouldn't recommend putting her through additional testing. There isn't any practical benefit for her from these scans, and it would only cause unnecessary physical "torture." The focus should be on symptomatic therapy—which it looks like she is already receiving—to try and make her remaining time as comfortable as possible. If you ever need some kind of psychological support, feel free to send me a DM and I can put you in touch with someone.

We didn't go for the PET scan because, honestly, there was just no point. Mom hasn't been able to get out of bed since Friday; she’s just drifting in and out of sleep, stuck in this constant state of confusion. She isn't eating or drinking anything. Yesterday, she didn't even recognize me, and today she knows who I am, but she's entirely lost in her own world. She's in pain. She mumbles things every now and then—I can't make sense of what she's saying—and she'll bring empty hands to her mouth, yelling that she's thirsty, but when I give her water, she just spits it out. She can barely keep her eyes open. My doctor told me this is the beginning of the end. It breaks my heart. I have to take her to a hospital or a palliative care unit so they can provide what I simply can't—IV fluids, intravenous medication, a proper hospital bed... and ultimately, so I don't force a seven-year-old child to watch his grandmother die right in his bedroom. And with how things are these days, with no visitors allowed, if I take her to the hospital, I might never see her again. I'm falling apart; I've been crying all day. My aunt keeps screaming at me that I have to do this, that I have to accept it. She says it's what my mom would have wanted, too. The worst part is feeling so helpless. There are days when Mom actually begs me to just let her go.

Donna Reyes11 said:We didn't go for the PET scan because there was honestly no point—Mom has just been lying there since Friday, sleeping or half-awake, totally out of it. She isn't eating or drinking anything. Yesterday she didn't even recognize me; today she knows who I am, but she's completely lost in her own world. It hurts her so much. She just mumbles things I can't even make sense of, bringing her empty hands to her mouth and shouting that she's thirsty, but when I give her water, she just spits it out. She can barely keep her eyes open. My doctor told me this is the beginning of the end. My heart is just breaking. I have to get her to a hospital or a palliative care unit so they can provide what I can't—IV fluids, meds, a hospital bed... and honestly, I don't want to force my seven-year-old to watch his grandma die right here in his bedroom. Plus, with how things are these days—no visitors allowed—if I take her to the hospital, I might not see her again. I'm a wreck, just crying all day long. My aunt keeps yelling at me that I have to do this and that I need to accept it. That's what Mom would want, too. The worst part is feeling so helpless. Some days, she even begs me to just make it all stop.

I am so sorry. 😢The doctor is right; this is what the end looks like. Ask Mom's doctor for the contact info for their medical team or a local hospice organization; they can help you with pain management medications and offer guidance on what to do next.

Carol Reed19 said:I'm so sorry 😢 The doctor is right; this looks like the end. You should ask your mom's doctor for a contact for a palliative care team or a local hospice association; they can help with medications to manage her pain and offer guidance.

My doctor sent over a palliative team who actually called yesterday for a phone consultation 😢. After that, they called me last night saying they'd talked to the doctor and increased Mom's patches. They didn't even show up, let alone offer to come by. My doctor had already arranged home nursing once a week, and yesterday she also requested a visiting nurse to assess things. The visiting nurse recommends five visits a week, but she’s advising me to just put Mom in the hospital. They're telling me I don't have the setup at home to make her comfortable. The doctor actually came by herself—twice on Friday, and then today... honestly, I'm speechless. After dealing with countless terrible HMOs, I finally decided on one that was "just close enough, doesn't matter how good it is." I asked if they would take Mom in since she isn't originally from Chicago; she moved in with us at the start of March when she could no longer be alone. The doctor took her in without any issues, even though she's never actually seen me in person except on paperwork. Both the doctor and the nurse truly have their hearts in the right place—they do everything they can to ease the burden, coming by themselves to administer IVs, take swabs, showing up during their breaks or after work, picking up prescriptions from pharmacies, even hauling the meds themselves... seriously, they go above and beyond.
However, when I called emergency services today because Mom's abdomen is swollen like she's pregnant from fluid retention, they just brushed me off—told me to give her two anti-inflammatories and that was it. They just don't have the will to actually come out.
The other day we were in the ER at Rebro Hospital for seven hours; Mom barely made it through, and everyone there was just shouting, "We don't have any beds"... basically warning us not to even think about staying there. At the time, it didn't seem like such a big deal; we just kept pushing through at home as long as we could. But now, it feels like we need something else entirely. This city is chronically lacking a real hospice. A place where you get medical care, but your family can actually sit with you and hold your hand all day and all night.

I can barely find the words right now. I’m sitting here at my mom's place, just listening to her breathe. I'm typing this through a haze of stress because I honestly don't know what to do with myself; I feel like I want to crawl out of my own skin. I can't help but think that maybe this is one of our last—or second to last—days together, and she’s just going to sleep right through it. When I try to take her hand, she pulls away... even a simple touch seems to bother her. She just wants to be alone, and I guess that's okay too.

Donna Reyes11 said:I’m having such a hard time typing this—my fingers are shaking. I’m sitting here at my mom’s place just listening to her breathe. Honestly, I’m spiraling right now because I don’t even know how to deal with all this. I feel like I want to jump out of my own skin. It hits me that this might be one of our last—maybe even our absolute last—days together, and she’s just going to sleep through it. When I try to hold her hand, she pulls away... she just can't handle being touched. She wants to be alone, and hey, that's okay too.

I totally get where you're coming from. Have you thought about reaching out to the La Verna association? They have a mobile number listed on their site: 0993127749

I know exactly what you're going through, so I'll leave this here.

My loved one passed away at home too—there just wasn't an option to keep them in the hospital long-term, and that was that. You just have to deal with it. We had a home health nurse who checked in occasionally, and we actually paid her extra to come by more often. That was the extent of it.

The oncologist at the Tumor Institute drained that fluid from the abdomen with a needle—he literally told another patient to get up, told my loved one to lie down so he could do it, and then they were headed home. There weren't any spare beds for extra patients, but hey, the doctor did everything he could. Try reaching out to the oncologist and asking if someone can do the same; that abdominal fluid buildup creates terrible pressure, and it can be drained with a needle.

Honestly, you need to find a way to find some peace within yourself—otherwise, you're just adding stress to your mom.

I know it sounds unbelievable, but you'll recognize it when the day approaches. She will know, and you will know; it all becomes clear. I can't explain how right now, but trust me, you won't miss it or be caught unaware. A friend told me the same thing when I was terrified it would happen while I was stuck at work, and she was right.

A few days before passing, a person starts "exploring" the other side—they begin to lose consciousness for an hour, two, or three, and then they "wake up" normally. It feels like they are sleeping, but they are actually exploring. Once those days start happening, count on them passing within a week at most.

Accept it. Do what you can, manage her pain with patches, and pray. She isn't expecting anything from you—not even for you to hold her hand—just a goodbye and for you to let her go. Accept that this is the cycle of life; love and presence are the only things she needs.

Donna Reyes11 said:I'm thinking maybe our last or second to last day together, and she'll just sleep right through it.

That sentence really hit home for me—it took me straight back. I had this desperate hope that my dad would just sleep through all of it too. They told me he passed away in his sleep, and honestly, I truly hope that’s the truth.
Dear Christian Lopez29, I am so incredibly sorry you're going through this. Everything I would want to say was already covered in the previous post. Hang in there.