I dealt with this exact same thing a few years back. I went through the whole ringer—MRIs, CT scans, everything. Turns out, I was perfectly healthy. Just told it was anxiety. Honestly, it hasn't hit me like this in ages, probably not since the doctors looked me in the eye and said, "Physically, you're fine." 😉
Jeremy Hall4 said:An hour and a half of fun is plenty. In my opinion, this runs far too long.
Look, what do I know? Maybe it felt a little long, but it wasn't a disaster. There are some movies that actually make me twitch because they just won't end, but I didn't get that kind of anxiety from this one.
Caught it last night. Honestly? A blast. I don’t know what people are actually looking for when they go see movies like this, but we got exactly what we paid for: two and a half hours of pure, unadulterated fun.
So, I dragged my man out last night to catch this one. Honestly? We had a blast. There were definitely those moments where we were just cracking up, laughing our heads off. I can't say I was annoyed or disappointed or anything because, let’s be real, I wasn't expecting anything more than some lighthearted fun. The plot is pretty much what you'd expect from a flick like this—nothing groundbreaking—but the action was solid, the jokes landed, and the cast was great. All in all, if you're just looking to switch your brain off and enjoy yourself, I'd definitely recommend it.
I need a recommendation for a solid neurologist in Miami, private practice. We're looking at circulation issues and neck vertebrae problems that are messing with my vision, so if anyone knows someone who can actually handle that properly... so far the only name I've been thrown is Dr. Sučević. Does anyone know anything more about them?
I need a solid recommendation for a private neurologist in Miami. I'm dealing with some circulation issues and neck problems that are messing with my vision, so I really need someone who actually knows their stuff and can dig into this. So far, the only name I've been thrown is Dr. Sučević. Does anyone actually know if they're any good?
hollowridge88, please accept my deepest condolences 🙂
I've been following along this whole time, but I haven't said anything because everything you’ve been going through is still so raw—my own dad passed away less than two months ago. I don't really have much smart to say that hasn't already been said. Just honor your mom and keep your head up. You're a great person!
I’m on the hunt for a seriously top-tier ophthalmologist in Miami, maybe somewhere in the surrounding areas too. But listen, I don't want some quick fix—I need someone who actually does a thorough job and works out of a clinic that’s actually well-equipped. I specifically need a visual field test done, and I'm looking for a deep-dive exam that goes way beyond just checking my prescription and calling it a day.
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...
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.
Amanda Miller69 said:Thanks.... we’re fighting, no giving up here. I’ll do absolutely everything in my power to extend his life. Everything is just dragging out so much. The doctor is coming tomorrow, so we'll figure out a specific diet to get him strong enough to head home and actually start chemo. We've waited way too long already.
I’ve heard plenty of horror stories about Jordan, but you don't really believe them until you're living through it yourself. Which hospital was your dad at?
My dad was first admitted to the local hospital in our area, and now he’s staying over at the big city medical center. And look, I’d heard plenty of bad things about hospitals in this part of the country before—honestly, doesn't everyone?—but besides the usual shortage of doctors, nurses, and basic supplies, what we experienced during Dad's illness was something else entirely.
And don't even get me started on our local clinic. If we don't check in for a while, they’re the ones calling us to see how Dad is doing. They even come by for home visits whenever necessary. As soon as the staff arrives, they find her, and if anything is off, they call us immediately. They even organized our transport to the hospital since Dad can't move on his own. She's informed, professional, and actually willing to help. And this isn't even some major metro hub; it’s just a tiny little coastal town.
Basically, through this whole disaster, at least we didn't have issues with the doctors.
From what I understand, CRP is just a marker for inflammation. My dad had high levels a few times, and it was always talked about as an inflammatory process.
I’m following your story, Zachary Howard2, and honestly, I admire your strength and how you're sticking with this. On the flip side, this whole thing with the doctors and how they treat patients is just mind-blowing. Here in the States, our situation is the complete opposite. The nurses on the units where he stayed, the doctors, the oncologists, the family GP, the home health nurses... we have nothing but praise for every single one of them. Even now, while he's in the ICU—totally lost, his entire personality completely flipped (he's yelling, swearing, making threats, pulling at oxygen lines and IVs when he's not lucid)—the nurses and doctors are still treating us with such humanity and professionalism. They do everything in their power to make things easier for him, and they even comfort us, telling us not to take his words to heart because it isn't him talking—it's just the disease that has totally wrecked his brain and everything else.
Hang in there, Zachary Howard2! Sending you guys so much strength, and hoping your father-in-law beats this monster!
Richard Martin5, don't let them get to you. Don't give in to the hopelessness. You’re going to need every ounce of strength, both for yourself and for your mom. Like John Foster38 says, the silver lining is that there aren't any metastases and Mom is heading into surgery. After that—it's full-on battle mode!
Drop by here whenever things get heavy. I don't post much because I'm just wiped out and life keeps throwing curveballs at us, but I'm reading everything every single day. Honestly, just being able to read this helps. Knowing you aren't alone, that people actually get it and want to help... it matters.
My dad ended up back in the ICU again today. He hasn't been urinating since yesterday, his skin started itching like crazy, and he was incredibly restless. They drew blood this morning and the results are just awful. Creatinine is around 700, urea is 37, potassium is 6.8, and his sedimentation and white cell counts are through the roof. As soon as he was laid down in the ICU, he started wheezing—could barely breathe. Long story short, it's not looking good. His kidneys are failing, so all the fluid has shifted into his abdomen and lungs. They're going to try antibiotics to settle the inflammation and if they can, they'll look into dialysis. To be honest, the doctor on duty isn't feeling optimistic at all. I can't even remember half of what she said; everything is just a total blur right now.
I keep spiraling back a few months to when we first got the diagnosis and the prognosis. I can't sit still, I can't sleep, I can't even think straight...
The only saving grace in all of this is that his medical team called us the second the results came in, around midnight. They had an ambulance organized for transport immediately. He was admitted to the ER and processed the moment we walked through the door, and by 4 AM he was already hooked up to monitors, on oxygen to help him breathe, with a catheter and an IV full of whatever they could find to help him out.
cosmiclynx14 said:Carl Kern66 how's everything looking on your end? How much xeloda did they prescribe him? And what’s the cycle look like? Like, how many days in a row does he have to take the pills before taking a break, then starting the next round, or what? We actually started the xeloda tablets yesterday just to try and maintain things... god, even saying it out loud sounds so pathetic..
How about you guys? What are the doctors saying? Are you still tapering off or getting ready for surgery or what?
Things aren't going great here. I took him to see his oncologist last week because of those (bad) test results, and she isn't extending the xeloda. Honestly, she isn't being very optimistic, but then again, none of the doctors have been optimistic from the start. I'm heading back on July 23rd with the new results, so we'll see.
Dad spends most of his time in bed; he's in pain and just incredibly weak. He can barely make it to the bathroom, which is luckily right in his room, just a few feet from the bed. Sometimes I clean up his bedside table, sometimes my mom helps him out. He eats, but we practically have to force him to take two meals and some puree. He'll pick at some fruit, ice cream, or maybe a dessert if I manage to whip something up.
Basically, we're in a really dark place right now. The thing with my dad is that it was bad from day one, and he's been on this attempt at maintenance with xeloda since the beginning, but it just isn't working for him.
Since the diagnosis, we've gone out and hunted down four different opinions across three different states. And all four were identical, unfortunately. Bad prognosis, xeloda maintenance as the only option, and inoperable.
The first time around, they prescribed him 2x3 xelode 14 days with a one-week break. The second time was 1x3 and 1x2, also 14 days on and a week off. He only made it through seven days of that before ending up in the ICU.
How is your dad handling the xeloda? Has his spirit lifted at all? Is he still doing okay physically? I know you mentioned before that he's still doing everything he used to, just getting tired easily.
Sending you so much strength and patience, and to everyone else fighting for themselves or their loved ones 🙂
Ugh, I went through the exact same nightmare. My heels were cracking so deep they’d actually bleed. It was beyond uncomfortable—just straight-up painful. Honestly, I tried everything under the sun: drugstore lotions, fancy pharmacy creams, homemade stuff... you name it. But here's the kicker: the one thing that actually worked isn't even available in the US anymore. It was this ointment called Kerasal. My dermatologist prescribed it, and man, it was a lifesaver. After about six months of being super disciplined with it, I finally saw results. Then, because of some annoying regulatory nonsense, it got pulled from our local pharmacies. Luckily, my feet haven't cracked since. Now, I just keep them in check using Dr. Pasha's Gold Balm, a ceramic foot file, and some urea cream from Walgreens.
If you happen to have anyone living over in Germany, you might be able to find Kerasal in their pharmacies, so it’s worth asking. Plus, my local pharmacist told me they could probably just whip up a custom compound with the exact same ingredients as Kerasal if I really needed it. I'm keeping that option in my back pocket just in case things get bad again. 😉
Arthur Cooper6, unfortunately, we all know exactly what you’re going through here. Sending you guys so much strength for the fight 🙂
Quick little update on our situation. After nearly two months off because his kidneys were failing him, Dad started back on Xelod. Honestly, it’s probably the only thing that makes sense given the metastases and how he’s doing overall. But man, it didn't even last long this time—after just seven days, his kidneys started acting up again. This time, the ER staff didn't even bother asking if we wanted him to stay; they just shoved him straight into the GI intensive care unit. He spent three days there not even getting out of bed, barely eating, just lying there naked watching people die all around him. Since he wasn't getting any treatment that couldn't be handled at home, we finally brought him back
Basically, we're managing those intense pains that landed him in the hospital with Voltaren injections. For most of the day, Dad is actually pain-free and totally present 😍 he’s walking around a bit, has a decent appetite, we talk, we laugh. He’s even planning to go fishing with my husband one of these days 😍
The ultrasound they did at the hospital showed necrosis in his liver and a new tumor about the size of a hand on his peritoneum. He’s really not sure if he wants to keep up with the Xelod anymore. Before the first cycle, he wasn't in any pain, but during this second round, the pain became absolutely unbearable. With the tumor growing, the meds don't seem to be doing anything, and he just doesn't see the point in all this torture. I honestly don't know what to think 🙂
So yeah. We have a follow-up with the oncologist next week, so we'll see what happens.
So, how’s everyone doing? brisklynx51, Gary Thomas13, Zachary Howard2, little wine lover, Sarajevo-Alma, school... how are my favorite people holding up?
@Gary Thomas13/">@@Gary Thomas13 🙂 Man, your last post really hit me hard. Your dad is lucky he had a son like you by his side!
Over here, the main issue right now is the pain. After one round of Zantac, Dad’s kidneys were in such bad shape for over a month that he couldn't even stick to his treatment. That's when the pain started, and they prescribed him Tramal. Before that, he was taking Advil, which actually helped, but he had to stop because of his kidneys.
And let me tell you, Tramal was a total nightmare. Not only did the pain never fully go away, but it completely wrecked him. He started getting disoriented, lost control of his right hand, couldn't walk, and turned aggressive. He didn't get out of bed for three days. Once his kidney levels finally stabilized, we went back to the Advil. Within a day, Dad was back to himself. He’s stronger, eating better, walking a lot better, regained control of his hand, and stopped acting confused. But the problem is, the Advil (600mg granules) that used to keep him pain-free for 10 or 12 hours at a time just isn't cutting it anymore.
In the meantime, they put him on a Durogesic patch. Started at 25, then moved to 50. It works about as well as a Band-Aid. Zero points.
We've also tried "regular" painkillers like Tylenol, Analgin, Kafetin... everything provides a tiny bit of relief, but he's still hurting.
Does anyone have any ideas, since the doctors are clueless? Maybe try Voltaren?
We're heading to see the oncologist today for a checkup, so we'll see what she says. We're just hoping Dad can get back on some kind of therapy soon if things keep going this way.
Gary Thomas13 said:Sadly, Dad lost his fight today... he didn't suffer, and he didn't die in pain. It was over in just five minutes... he just stopped breathing...
Amy Wells78 said:Hey everyone, Here's the deal: my dad is undergoing radiation for a neck tumor. He’s only had two sessions—which take forever, by the way—and he already can't swallow food, he's vomiting... he's taking it really poorly. Does anyone know of any pills? Honestly, I don't care if it's prescription or how much it costs, or where you get it, just anything to help with this nausea and vomiting.
The problem is he can't eat a single thing. He's at home. And frankly, the doctors couldn't care less about any of this. Do we even have the right to call and ask them to come to the house to give him an IV or something?
We’ve been giving Dad honey mixed with ginger, and we’re still doing it. We grate about 200 grams of fresh ginger into a kilogram of honey. Or we make chamomile tea and stir fresh ginger into that. It helps him so much. When he was on chemo, the nausea was brutal, though he never actually vomited. Now, he hasn't been on chemo for over a month, but for some reason, the nausea just stuck around. Ginger is a lifesaver.
Things aren't looking great here. Every day Dad seems to be fading more, getting weaker and weaker. He’s still pretty independent for now. He needs help in the shower, and he's too scared to walk without someone there, but he won't let anyone else handle his regular hygiene (including managing his ostomy). About two weeks ago, he started taking Megostat and it’s been a total game-changer. It doesn't fix everything, but he can manage three meals without a fight and snacks on things in between. Plus, his speech came back. For a while there, he could only whisper.
He hasn't been on chemo for a while because after the first cycle, his kidneys started failing. We somehow managed to get his potassium, urea, and creatinine levels back near normal, but then suddenly, the labs were bad again. After twelve hours in the ER with intensive treatment, everything went back to being almost normal. Now, the oncologist scheduled him for session 16, but with his kidney situation, I honestly don't know what to expect.
What’s the situation like for the rest of you? Michelle Kelly4? John Foster38? cosmiclynx14? Anyone else?