Support resources for families dealing with cancer and other serious illnesses

We stopped by Villa Brezovica today. Honestly, the whole place is really beautifully laid out—it feels spacious and very clean. From what I could see, it seems like they truly care about the residents there. They even have a physiatrist on staff. The nurses also left a really good impression on me. My only hesitation is whether it'll be an issue if we stick with her current primary care doctor. I noticed they prefer everyone to switch over to their own GP in Brezovica who just comes by once a week for rounds. But since we’d only be placing her there temporarily while she recovers, we were hoping to keep her regular doctor. The cost is actually quite high, too; it surprised me that they don't have a flat rate for that type of room, since it all depends on the level of care needed. It almost feels like we'll be guessing at the final price. Currently, they have space in a two-bed room in the skilled nursing unit where they provide extra care, but they're completely full when it comes to single rooms.

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Lisa White54 said:Yesterday was a total waste of time. I went in to pick up my mammogram results—which had been ready since Friday—thinking they’d be available on the patient portal, but nope, nothing there. To make matters worse, I had an MRI scheduled for 6:30 PM, so I showed up early, before 6:00, only to have the receptionist tell me I’d already missed the window for the mammogram results. Apparently, they stop processing those around 2:00 PM. So, what am I supposed to do with that? Fine. I called the MRI department to see if we could at least move forward. A nurse eventually comes out, brings me back, and then drops the hammer: they don't have the contrast dye needed for the scan. They can't perform the MRI, and they’re just going to reschedule me for next month. Honestly, I nearly fainted. I just had to push through it. 75 miles I'm not showing up just to waste anyone's time... but honestly, who can blame me? I should have just called ahead and asked first, just to be on the safe side.
Honestly, I have no clue when I’ll finally get around to knocking out those last two tests—the MRI and the ultrasound-guided biopsy. Once those are out of the way, everything will be lined up, and then it's straight to the anesthesiologist and finally the surgery itself.
I don't even need to tell you how I'm feeling. And I certainly don't need to point out that I had no idea just how unstable our healthcare system actually is. I know I shouldn't let myself get worked up, but honestly? Every single time, I’m just left staring in disbelief. It's the same story all over again.
Honestly, the absolute worst part is this limbo—that agonizing state where you have no idea what you’re actually dealing with. Is it something significant, or is it nothing at all? It feels like scratching your nails against ice.
And once I finally get the news... it’s obviously going to take some time to process. I just find myself hoping that if things do take a turn for the absolute worst, it won't be too late for me.

Don't waste your time—just go ahead and handle the search privately through Medicol. Once that's settled, you can go after Medicare to get your reimbursement. An oncology patient doesn't have the luxury of sitting around waiting. Just get the treatment done and focus your energy on whatever comes next.

Lisa White54 said:Angela Wright, my dear...
I honestly think this whole thing is impossible. I just can't wrap my head around it—I truly don't believe it's cancer. At least, I hope to God I'm right.
You’re 100% right when you say I'm still reeling from the shock. I can't just shake it off that easily; getting back on my feet isn't exactly coming naturally to me right now.
I truly believe everything in life happens for a reason, but I honestly can't wrap my head around why I'm stuck in this endless loop of problems that just won't let up! 🙂

Love...

Look, we all deal with our own messes, constantly. When you're stuck in the middle of your own crisis, you start looking at everyone else and thinking they don't have a single issue—as if they’re just making them up to make you feel bad. Honestly, Ježić, I get that you're feeling completely overwhelmed right now, but problems exist specifically so they can be dealt with. Take me, for example. I just barely scraped by through that second pregnancy—it was like trying to thread a needle, but thank God everything turned out fine. Now, two months later, my gallbladder is absolutely throwing a tantrum. They found some sludge and lesions on my liver, and my liver enzyme levels? Good grief, they're all in the triple digits. I'm passing orange bilirubin, and I'm stuck on this strict diet, hoping things will stabilize. Even though I was discharged from the hospital with "normal" results, it clearly isn't that simple. 🤷 I was actually feeling pretty optimistic, thinking things were finally starting to look up and I’d be sailing into smoother waters at last. And then, boom—just like that. I guess it’s probably for the best, though. You know how it goes; you can't exactly brag about everything going perfectly without feeling like you need to toss a pebble in your own shoe just to keep yourself from getting too comfortable.😳

Shock hits you like a freight train, and honestly, it’ll stick to your ribs until everything is finally defined and you can actually start fixing things. That's why you need to handle whatever business you can behind closed doors and just get to work. Hang in there—don't let yourself spiral into pure drama, because people who act out of pure emotion end up making massive mistakes. It’s going to be fine.

Hey! Glad to hear you're happy with the facility. If your Mom is only going to be there for a month, there's really no point in switching doctors—besides, this guy has to check on everyone anyway, it's just part of his job. It's weird that the price is a flat rate, but you'll manage through it. Good luck, and feel free to hit me up in a private message if you need anything else. BYE

We are currently fighting microcellular lung cancer along with brain metastases.
We’ve completed six rounds of chemo (the PE protocol) and finished head radiation; tomorrow, we start a second line of chemo with Hycamtin because of the progression in the lungs.

The issue—even though the head CT looks good following the radiation (only nine days ago)—is my dad. He’s completely lost; he refuses to eat or drink. At Mount Sinai Hospital, they aren't even concerned about this—I was literally told that this is just how you live with it and that we need to get used to it... especially since the head CT results are so positive.
To me, that isn't right—he isn't even on any steroids. Over the weekend, I took matters into my own hands and gave him Medrol (32mg), and his condition actually improved; he regained consciousness. When I mentioned this to the staff at Mount Sinai, his physician insisted I stop the Medrol immediately. I lowered the dose yesterday and today to 16mg. My dad is no longer himself—he barely speaks, lives in his own world, and is essentially just vegetating. This has been going on for seven days now. To top it all off, he starts chemo again tomorrow.
It feels insane to me. His radiologist is nowhere to be found, and Mount Sinai isn't offering any specific recommendations for his review. Where am I supposed to turn?

Get him to the ER right away and explain exactly what's going on; he’s almost certainly going to get cortisone. It’s obvious there's edema involved. You should also take the CT scan results so a radiologist can give it a second look somewhere else. Was the scan done with contrast?

Angela Wright said:Take him to the ER and explain the situation—he’ll get cortis, 100%. It’s clearly edema. Bring the CT scan so a radiologist can re-read it somewhere else. Was it done with contrast?

It was done with contrast. We were at the ER over the weekend. The ER at Jordanovac turned him away, so we ended up at Mount Sinai Hospital since that's where we live. Mount Sinai concluded he was just dehydrated, hooked him up to an IV, and sent him home. The doctor at Jordanovac—his specialist on the ward—knows all of this (his internist tells me we just have to accept this as our reality now). I'm actually heading to Jordanovac right now for his chemo, without Dad.

If I can't resolve anything there—back to the ER again?
It’s enough to make you snap; it's not cancer that's going to kill Dad, it's the doctors.

Ashley Murphy said:They used contrast dye. We were at the ER all weekend—the local ER near us turned him away, so we ended up at Mount Sinai Hospital since that's where we live. Mount Sinai decided he was just dehydrated, hooked him up to some IV fluids, and sent him right back home. His doctor over at the other hospital knows the whole deal (his internist tells me we just have to accept this is how it is and get used to it). I'm actually heading over to the other hospital for his chemo right now without Dad by my side.

If I can't get anything sorted there—do I just head straight back to the ER again?
It’s enough to make you lose it. It feels like the doctors are gonna kill Dad before the cancer even gets the chance.

Don't trust them for a second!!! Instead of actually helping us, they just make everything ten times harder—it's a total disgrace, this healthcare system!!! That's just how they are at those hospitals, they're only interested in sending you packing—it's a damn shame!

Here I am... again!
Tomorrow I’ve got an MRI scheduled, and then on Monday, it’s a lumbar puncture over at the NIH. I'll let you guys know how it goes. I keep holding out hope that they just messed up the diagnosis... we'll see!

Lisa White54 said:Here I go... again!
I’ve got an MRI tomorrow and then a biopsy on Monday—over at the NIH. I'll let you guys know how it goes. I'm still holding out hope they just messed up the results... we'll see!

Just go—it's going to be fine, you have to stay positive! Just prep yourself to be stuck there all day (pack a sandwich and some juice) because it can get crazy crowded. If you're heading to the one over in Washington, D.C., the wait times are usually brutal, though maybe it won't be too bad right now since everything is backed up with the strike?! Good luck!

Ashley Murphy said:They used contrast dye for the scan. We spent the weekend bouncing between ERs. The ER at Jordanovac turned him away, so we ended up at Mount Sinai Hospital since that's where we live. The folks at Mount Sinai decided he was just dehydrated, hooked him up to an IV, and sent him home. His specialist at Jordanovac knows the whole story (his internist keeps telling me this is just how it is and we have to get used to it). I’m actually heading over to Jordanovac right now for his chemo session without my dad.

If I can't get answers there, do I just head straight back to the ER?
It's enough to make you snap. It feels like the doctors might kill him before the cancer does.

Try going to Jordanovac around 2:30 PM and look for the senior nurse, Sandra Karabatic. She also heads up the Jedro association for people living with lung cancer. Ask her for advice and help. She usually works from 7 AM to 3 PM.
Personally, I’d camp out in that ER until they finally take us in, even if I have to cause a massive scene. If nothing else works, I’ll just take matters into my own hands and give him some Medrol again.

Angela Wright said:Go to Jordanovac around 2:30 PM and look for head nurse Sandra Karabatic. She also serves as the president of the Jedro Association for those living with lung cancer. Ask her for advice and help. She works from 7 AM to 3 PM.
If I were in your shoes—and frankly, given the scandal here—I would just hover near the ER until they finally saw him. At some point, if nothing else works, I might even take matters into my own hands and give him the Medrol again.

Nurse Karabatic is on the second floor (where we are being treated); I actually ran into her today...
The situation is this—his chemo has been delayed, and he’s scheduled for a bronchoscopy on Monday. He is currently registered as an outpatient.
The internist overseeing his care isn't particularly fond of Medrol—nor of my attempts to administer it myself—and insists that 32mg is an excessively high dose. She claims it’s due to the tumor progressing in the lungs and causing hormone secretion... which is strange, considering the CT scan looks excellent. Perhaps she’s right, but honestly, Dad seems much better after the Medrol...

After quite a bit of rather painful insisting on my part, she finally tells me that if I am truly going to be this difficult, she might as well write him a referral for an emergency neurological evaluation...
So, the doctor writes the referral, and we head over to Mount Sinai Hospital since that's where we reside... and that is when the real nightmare begins. Mount Sinai can't admit him because he's already registered as an outpatient at Jordanovac. The staff at Mount Sinai say the ward at Jordanovac is what he needs, so I have to go to the Jordanovac ER... and with my poor father looking like this, I certainly don't want to drag him back to Jordanovac again. The ER staff at Jordanovac are baffled; they insist Mount Sinai should be taking him. It becomes a endless loop of phone calls between hospitals, while my poor dad just sits in the car. In this moment, I almost think it’s a blessing that he is completely disoriented...
After all that chaos, Dad finally gets through the ER at Jordanovac and is admitted to the hospital...

Currently, there is no neurological workup happening, because Jordanovac doesn't provide that, and I suppose it will either happen via a referral... or it won't...

Angela—I can't get to the Medrol because the doctor lacks the authority to prescribe it, and clearly, I can't get him to a neurologist... Look, I understand the healthcare system is in recession; I know there are a million reasons and I see how hard they are working... but I am just so desperate and frustrated...
I wouldn't wish this experience on anyone.

Honestly, I just don't get this supposed "reluctance" toward Medrol. Look, we're talking about an oncology patient here; the tumor is actively causing edema... using a corticosteroid is a medical necessity. It’s no different than refusing to give someone morphine when they're in agony just because of some "personal preference." You should probably go find a doctor and have them explain what that kind of "reluctance" actually means. I don't even know what else to advise you, because everything else seems fine—the strikes, the doctors, the high cost of meds—but the bureaucracy is just an unstoppable force, now and forever. Bad karma at work here.

I honestly don't know what to say to you 😢.
I’ve spent three mornings straight at Villa Brezovica...
I tell them—plainly—that chemo isn't going to hold up when he's in a state where I can't even get him to eat or drink... when he can't even communicate his own needs...
I am by my father's side 24 hours a day... I see every single thing, even the most microscopic change...
For a year now, I've been praying for a miracle...
Fine, miracles don't happen...
But if we can't at least provide some semblance of quality through palliative care—damn it, I just don't understand why that isn't happening...

Okay, so now he's at the hospital...
And now I need advice—if there's no neurological assessment being done, what am I supposed to do? How am I even supposed to challenge the oncologist?

To be honest, I'm terrified of this situation—he's at Villa Brezovica right now, and what if his internist just dismisses a neurological workup as unnecessary? Are they just going to fix him up with something to mask the pain and call it a day?

Ashley Murphy, I am so incredibly sorry for what you and your dad are going through right now. It's honestly unbelievable how broken our healthcare system is. I actually have some Medrol left over from my own illness sitting here at home—if you need it, just let me know and I can get it to you. Really hoping your dad starts feeling better soon, and sending you all the strength in the world to get through this.

Joining this thread. About a month and a half ago, a lump popped up on my neck—felt like I’d swallowed an egg. Since I wasn't in Washington, D.C. this week, I started hitting up hospitals. First stop was the Mount Sinai Hospital ER, ENT department. Diagnosis: tonsil carcinoma with metastasis. I won't even bother writing out the Latin terms. Surgery isn't scheduled until November 30th, obviously because of the strike. I also went to check my ribs, and it's the same story. On Monday, I'm heading to a clinic, but I have a feeling this is the real deal. What's killing me is waiting two months for surgery. As far as tests go, I just need a CT scan and the usual pre-op stuff. I am completely lost, and honestly, so is my GP; he says in 30 years of practice, he’s never seen anything like this. Question for you all: has anyone heard anything or knows anything about tonsil cancer? Thanks.

Ashley Murphy, my dad actually has microcellular too—though his lungs are clear, he’s dealing with metastases in his bones and liver. We aren't even from Washington, D.C., but we made the trip over to Mount Sinai Hospital, and he's getting treated at their oncology department. Honestly, the doctors there are incredible. If it wasn't for the specific people who went above and beyond for him—especially considering how bad he was before starting chemo—he wouldn't be here today.
My advice? If you're looking for a second opinion, ask your doctor for a referral and book an appointment with an oncologist at Mount Sinai. You can call them or show up in person every day between 12:00 and 1:00 PM to schedule something. If you can, try to talk to one of the physicians directly and just ask—it doesn't matter that he's a patient over at Jordanovac; you have every right to seek a second opinion, and who knows, they might even decide to take him on.
Hang in there and don't give up. I know exactly what you're going through—we went through the same thing when the doctors at our local hospital sent my dad home without any treatment and basically told us that was it. Seriously, huge respect to the team at Mount Sinai for everything they've done.

Thanks to everyone... Dad is at Villa Brezovica in very critical condition, and they're saying this weekend is going to be a turning point.

I’m looking for some help. My dad was diagnosed with esophageal cancer about a month ago, and it’s already spread to his bronchi and larynx. He hasn't been able to eat normally for a few days now, so he's using a feeding tube instead. Since my Mom doesn't really have any experience cooking for patients in this condition, I was wondering if anyone here knows more about what kind of nutrition he needs. Maybe there's a specific website with recipes or some medical literature you could point us toward? Thanks in advance.

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steeleagle152 said:I'm asking for some help here. My dad was diagnosed with esophageal cancer about a month ago, and it's already spread to his bronchi and larynx. He hasn't been able to eat anything by mouth for a few days now—he's on a feeding tube in his stomach instead. Since my mom hasn't really dealt with cooking for patients like this before, I was wondering if anyone knows more about it? Is there a specific website with recipes or maybe some literature you could point us toward? Thanks in advance.

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Look, I had a friend dealing with the exact same thing. She stuck to light, blended meals—basically, you cook everything and then blend it with an immersion blender or a regular mixer, thinning it out with water until it's liquid enough to go through that tube in the stomach. You’ll need to have that tube swapped out once a month at the doctor's office—they probably already mentioned that to you. Also, there's actually ready-made food specifically designed for patients without functioning esophagi called ESHUR—search for it at pharmacies or online. That’s what she drank at first, and later, once she felt a bit better, she started blending her own food. It’s not a huge deal—just grab some blueberries or blackberries and freeze them to pack in the vitamins. He'll figure out on his own what sits well with him and what doesn't. Just stay away from beans, legumes, or kale for now, because those can cause digestive issues since things aren't moving through the usual way. Maybe Google it and you'll find something even better... Anyway, hope this helps. Bye! Oh, and one more thing—don't give him anything acidic until you check with his doctor, because it really bothered her.

Thanks for getting back to me.

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