They’re saying it’s urgent because things are so bad that even the drive out to the vineyard would be too risky. Looks like Sekino is running out of time.
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Posts by goldensailor0
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Yeah, both home health and hospice are involved. They practically begged me to call 911, and now we’re just sitting here waiting. They didn't want anyone taking her away—we promised her she could stay. Honestly, she's either unconscious right now or just too out of it to know where she is... or maybe she does. Whatever. The ambulance is almost here.
My guinea pig is my whole world.
So, just like the little guy, we decided she shouldn't spend her final days stuck in some hospital ward; she’s staying here with us at home.
It’s midnight, and my shift has officially started. She's exhausted from coughing so much that she's finally lying still, seemingly asleep after hours of tossing and turning. She barely touched her food yesterday, and even drinking is a struggle because of her swallowing issues. She's calm for now, but I'm terrified that when another coughing fit hits, she'll actually suffocate. It's a nightmare. The vet told us to call 911, but honestly, we were just at the ER ten days ago and she absolutely refuses to go back. That experience was traumatic for her. She made it very clear: never again.
I'm just scared of what comes next..
So, just like the little guy, we decided she shouldn't spend her final days stuck in some hospital ward; she’s staying here with us at home.
It’s midnight, and my shift has officially started. She's exhausted from coughing so much that she's finally lying still, seemingly asleep after hours of tossing and turning. She barely touched her food yesterday, and even drinking is a struggle because of her swallowing issues. She's calm for now, but I'm terrified that when another coughing fit hits, she'll actually suffocate. It's a nightmare. The vet told us to call 911, but honestly, we were just at the ER ten days ago and she absolutely refuses to go back. That experience was traumatic for her. She made it very clear: never again.
I'm just scared of what comes next..
Sam White62, glad you figured things out.
My sister’s doing okay with the patches, but we ended up spending the night in the ER because this cough—this constant hacking—just wouldn't stop. We honestly thought we were losing her, but they managed to stabilize her. We made it back home, but the coughing hasn't let up. It's been an endless cycle of lying down, sitting up, coughing, stretching her arms out... just struggling. It feels like her lungs are completely congested. Every time I think we've hit rock bottom, we find some tiny way to clear her throat just enough for her to drift off for a second... only for her breathing to get heavy again while she sleeps. She’s tough, though; Dad and I are the ones hitting a wall here. A friend came over to help, but she practically kicked her out—says she can't relax or rest when there are guests in the house. She's even turning away the home health nurse.
Any advice on dealing with this cough?
My sister’s doing okay with the patches, but we ended up spending the night in the ER because this cough—this constant hacking—just wouldn't stop. We honestly thought we were losing her, but they managed to stabilize her. We made it back home, but the coughing hasn't let up. It's been an endless cycle of lying down, sitting up, coughing, stretching her arms out... just struggling. It feels like her lungs are completely congested. Every time I think we've hit rock bottom, we find some tiny way to clear her throat just enough for her to drift off for a second... only for her breathing to get heavy again while she sleeps. She’s tough, though; Dad and I are the ones hitting a wall here. A friend came over to help, but she practically kicked her out—says she can't relax or rest when there are guests in the house. She's even turning away the home health nurse.
Any advice on dealing with this cough?
What was I thinking when I said "it’s just like that"? Yeah, exactly. There wasn't a single word about what they told me yesterday in my discharge papers. They basically kicked her out with zero hope or comfort—just a polite way of saying, "get lost, you've got nothing left for us here." Luckily, I managed to find some actual human decency in the end...
Okay, turns out it’s not the total disaster I was panicking about. They’re letting her come home, though she'll still be on some meds or an IV drip and they want her back for a follow-up if...
Sam White62, we’re in the same boat. My sister is being discharged from the hospital tomorrow for good; she’s coming to live with me and my old man. They say the liver metastases are just too far gone to stop. The unbearable pain has subsided—probably thanks to those patches—so since she isn't hurting right this second, her mind has already jumped to remodeling the kitchen. She looks yellow and frail, struggling to breathe, and lives in constant fear that the doctors might miss a dose or forget something. As for me, it's just pure panic, dread, and grief. I keep wondering what happens tomorrow when she actually reads that discharge papers. Man, it's heavy. I’ve rented a hospital bed and lined up a home health nurse, and apparently, the hospital will coordinate palliative care... but honestly, this is going to be hell.
Amanda Wells75 said:I haven't checked in for a while because there wasn't much news regarding my mom's condition. After her fifth round of chemo, her CA-125 marker shot up from 184 to 1118. Because of that, the doctor said there was no point in even attempting a sixth round of chemo. She had a CT scan, and the results show the 33mm secondary growth hasn't changed, but there are quite a few new spots on the liver. The pelvic area and other organs seem okay.
Mom has been prescribed Endoxan 50 mg (one pill twice a day) and Megostat 40 mg/ml.
The doctor mentioned she should take these for two months before coming back for a check-up. She needs to get her markers tested right before the appointment, since these meds won't actually show any effect until after those two months pass. I'm wondering—can you really expect those markers to drop from these pills?
Best,
Maya
..Yeah, my sister is in a similar boat. They couldn't give her chemo because of her liver, so they switched her to some hormone therapy (Zoladex and breastan), which feels like a total sugar pill to me. It feels more like a placebo than actual medicine, but hey, what do I know? I guess they know what they're doing.
It’s been a month on this hormone therapy (if that's what you call it), and honestly, her overall condition has gone downhill. First, there's the unbearable back pain that keeps her stuck in bed most of the day. We got her spine scanned, and it turns out there aren't metastases there; it's just "classic" spinal issues like curvature and calcification. We're dealing with it using patches, which help sometimes and fail others. Usually, we have to throw in some painkillers or sleep aids too.
So, at least regarding her spine, things are slightly better—though we're worried the pain might be referred from somewhere else entirely. Now, abdominal pains are starting up. We'll get the new liver marker results tomorrow, and I'm pretty nervous that they won't look good.
Betty Allen15 said:...we should have had psychological support too, but we didn't know where to turn.
Well, this forum is its own kind of therapy, though I was pretty surprised when I searched for "psychological" just now and nothing popped up :/.
That said, some non-profits do offer free professional counseling. I actually took my sister to a local support group once. I basically had to drag her there because she’s convinced "nobody can help her"—as if she’s the smartest person in the room. Maybe asking for help feels beneath her, or maybe she just doesn't want to admit she's struggling. Some people just prefer playing the victim; why ruin the role now?
I wasn't sure what to expect either—how to act, what to say, or even who to talk to. It’s hard enough to make that call when you're doing okay, let alone when things are falling apart. When you feel like garbage, even moving from the couch feels like a marathon, much less seeking help.
We went together, and they were great—welcomed us warmly, explained their mission, and offered their services for just a tiny membership fee. Even though that first visit felt successful and useful, we haven't been back, despite all the chaos and trauma hitting us daily. It's been a year. Honestly, when life sucks, we just lean into the suck and wait for it to pass. If it passes. It's not a great strategy.
So, I'm making a formal vow 😉 that I'll head back there next week with the intention of actually staying. I'll probably go solo, since my sister will likely find some excuse as to why she can't make it. I'm going to try to learn how to actually ask for help, in the hopes that they can actually provide it. We'll see..
..after talking to the doctor:
Just like I figured—I got there, panicked, started stuttering, and completely blanked on what I even wanted to say..
The doctor basically says this is just how it goes now. How? Well, we do chemo, that helps, then the disease spreads again, so we do it all over again, and again, and again..
So, yeah, I'm thrilled about how many times the word "again" popped up. Just thrilled. Or maybe just slightly less miserable.
Diana sounds like someone out of a fairy tale; it’s hard to believe people like that actually exist. How am I supposed to help my sister find a more positive outlook? Trying to lead by example won't work—I'm healthy, so it's easy for me. Besides, I'm not exactly the "go-getter" type.
And what does "positive attitude" even mean? Thinking happy thoughts? Believing things will get better? That's stupid and boring. Things aren't going to get better. To me, having a positive attitude just means accepting that things are okay right now, because they won't get any better than this. We'll just keep moving through it, one thing after another, again and again..
Just some thoughts. These are mostly rhetorical questions, but maybe someone feels like chiming in to make surviving this a little easier...
Good luck!
Just like I figured—I got there, panicked, started stuttering, and completely blanked on what I even wanted to say..
The doctor basically says this is just how it goes now. How? Well, we do chemo, that helps, then the disease spreads again, so we do it all over again, and again, and again..
So, yeah, I'm thrilled about how many times the word "again" popped up. Just thrilled. Or maybe just slightly less miserable.
Angela Wright said:Diana was such an incredible person...
Diana sounds like someone out of a fairy tale; it’s hard to believe people like that actually exist. How am I supposed to help my sister find a more positive outlook? Trying to lead by example won't work—I'm healthy, so it's easy for me. Besides, I'm not exactly the "go-getter" type.
And what does "positive attitude" even mean? Thinking happy thoughts? Believing things will get better? That's stupid and boring. Things aren't going to get better. To me, having a positive attitude just means accepting that things are okay right now, because they won't get any better than this. We'll just keep moving through it, one thing after another, again and again..
Just some thoughts. These are mostly rhetorical questions, but maybe someone feels like chiming in to make surviving this a little easier...
Good luck!
So, my sister has officially entered her second year fighting breast cancer. After surgery—and maybe even before that—it spread to her bones (femur), not to mention the lymph nodes are involved too.
Things actually looked significantly better after her second round of chemo. Ultrasounds, CT scans, markers—everything pointed toward improvement. We were feeling pretty good about it, but then a few months later, a lymph node in her neck flared up. They operated, and turns out, it was a metastasis. A follow-up PET-CT showed she was still doing better than she was a year ago (except for that neck node), which was back in September.
She started taking Xeloda and almost immediately developed this heavy cough. We figured it was just a side effect, but after more testing, we suddenly found out there are metastases in her liver and lungs. It’s been only three months since the last PET-CT, where everything looked clear.
Then I remembered she mentioned during that PET-CT that they were rushing her through the process. She was supposed to slowly drink the contrast over half an hour, but she said they were in such a hurry that she had to chug the rest of it quickly. Who knows if it even distributed properly through her system. Can you even trust results like that?
And now what? What do we do about the lungs and the liver? Is this it? Just sit around and cry? She starts a new round of chemo in 14 days—Taxol + Gemzar. Will that work? Is 14 days too long to wait? It feels like we're always waiting for something.
The whole family is just devastated; we've hit rock bottom. My dad and I don't even know what to say to her, let alone to each other. Nobody has the strength left to play cheerleader or hold onto hope. Plenty of doctors claim modern medicine has enough tools to keep people going for a long time, but her actual oncologists look genuinely worried. I'm preparing to go down there by myself to ask them straight up. I need them to either give me some comfort or just bury me with the truth, if I can find the nerve. I'm afraid I'll just freeze up and won't be able to even listen, let alone ask anything.
I pop onto this forum every now and then since this all started. Honestly, guys, what are you all going through? How do you manage? How am I going to?
Anyway, that's where things stand. I've vented enough. I doubt I've brought anyone any joy today.
Wishing everyone luck.
Things actually looked significantly better after her second round of chemo. Ultrasounds, CT scans, markers—everything pointed toward improvement. We were feeling pretty good about it, but then a few months later, a lymph node in her neck flared up. They operated, and turns out, it was a metastasis. A follow-up PET-CT showed she was still doing better than she was a year ago (except for that neck node), which was back in September.
She started taking Xeloda and almost immediately developed this heavy cough. We figured it was just a side effect, but after more testing, we suddenly found out there are metastases in her liver and lungs. It’s been only three months since the last PET-CT, where everything looked clear.
Then I remembered she mentioned during that PET-CT that they were rushing her through the process. She was supposed to slowly drink the contrast over half an hour, but she said they were in such a hurry that she had to chug the rest of it quickly. Who knows if it even distributed properly through her system. Can you even trust results like that?
And now what? What do we do about the lungs and the liver? Is this it? Just sit around and cry? She starts a new round of chemo in 14 days—Taxol + Gemzar. Will that work? Is 14 days too long to wait? It feels like we're always waiting for something.
The whole family is just devastated; we've hit rock bottom. My dad and I don't even know what to say to her, let alone to each other. Nobody has the strength left to play cheerleader or hold onto hope. Plenty of doctors claim modern medicine has enough tools to keep people going for a long time, but her actual oncologists look genuinely worried. I'm preparing to go down there by myself to ask them straight up. I need them to either give me some comfort or just bury me with the truth, if I can find the nerve. I'm afraid I'll just freeze up and won't be able to even listen, let alone ask anything.
I pop onto this forum every now and then since this all started. Honestly, guys, what are you all going through? How do you manage? How am I going to?
Anyway, that's where things stand. I've vented enough. I doubt I've brought anyone any joy today.
Wishing everyone luck.
The waiting game is absolutely infuriating. It just gets under your skin.
So, here’s the deal: it's metastatic breast cancer. They need to perform a lymph node biopsy on the neck to get a histological analysis so they can pinpoint the exact type of cancer. The goal is likely to figure out which chemotherapy cocktail will actually work.
But of course, you're stuck in this endless loop of waiting for your turn for surgery, while that nasty thing on the neck just keeps progressing. By the time you finally get seen, it feels like ages have passed since those nodes were first spotted.
Does anyone know if it's possible to get this surgery and testing done through a private clinic? And if so, is the cost astronomical? Apparently, it has to be done under general anesthesia. :/
So, here’s the deal: it's metastatic breast cancer. They need to perform a lymph node biopsy on the neck to get a histological analysis so they can pinpoint the exact type of cancer. The goal is likely to figure out which chemotherapy cocktail will actually work.
But of course, you're stuck in this endless loop of waiting for your turn for surgery, while that nasty thing on the neck just keeps progressing. By the time you finally get seen, it feels like ages have passed since those nodes were first spotted.
Does anyone know if it's possible to get this surgery and testing done through a private clinic? And if so, is the cost astronomical? Apparently, it has to be done under general anesthesia. :/
..Yeah, mistyjackal842, you hit the nail on the head. My mom went through the exact same thing. They completely ignored the tests that were obviously necessary. My dad kept pushing them to run the diagnostics—he actually knew his way around a medical chart—but they just acted like they knew better... or maybe they were being smart by waiting for the hospital to bleed a few extra bucks out of us. Looking back, it was probably just bad timing, heavy traffic, everyone being on vacation... kind of like a strike.
On the flip side, a doctor at that same Mayo Clinic saved my life a few years ago after a car wreck. A neurosurgeon. Honestly, neurosurgeons are the GOAT. Internists should be behind bars... okay, I'm kidding, mostly. I couldn't write without a little sarcasm. How else would I have survived this whole mess? This life has been pretty much a disaster from day one, with maybe a few decent moments, and even those weren't exactly brilliant. ...And I still consider myself an optimist..
On the flip side, a doctor at that same Mayo Clinic saved my life a few years ago after a car wreck. A neurosurgeon. Honestly, neurosurgeons are the GOAT. Internists should be behind bars... okay, I'm kidding, mostly. I couldn't write without a little sarcasm. How else would I have survived this whole mess? This life has been pretty much a disaster from day one, with maybe a few decent moments, and even those weren't exactly brilliant. ...And I still consider myself an optimist..
mistyjackal842 said:Thanks for all the support, everyone. I tried calling the White Phone, but it’s just an automated system at that number...
mistyjackal842,
My mother passed away due to medical negligence—basically doctor error/carelessness/rudeness—at a different hospital. My dad hired a lawyer and sued them. The whole thing dragged on for about ten years before we finally won the case. I have no idea how it would have gone without an autopsy, but that was the key. The process was so draining, uncertain, and just "dirty"; you can never gather enough evidence, so the autopsy was everything. It was expensive, too. I don't know how they survived financially if the hospital had won. I wasn't deeply involved in the specifics, but between lawyers, one expert witness, then another, plus all the appeals... I honestly don't know how my old man handled it mentally, physically, or financially. It isn't easy, but it can be done. It takes someone brave and relentless. Personally? I couldn't do it.
Just to be clear, I'm not saying doctors are all villains or lazy jerks because of this. I've met plenty of conscientious, kind, and attentive ones. I believe most of them are, and I really respect the medical profession.
Hey everyone.
First time posting here, but I think I’ll be sticking around for a while, because...
My sister was diagnosed with breast cancer. She had surgery about 5 or 6 months ago, but now metastases have shown up. They're in her sternum, femur, ribs, and liver. Not to mention the lymph nodes.
The bone pain started about two months ago. It hurts, but not enough to require heavy painkillers yet. An X-ray didn't show much, just the PET/CT scan (honestly, seeing those "spots" on the scans is pretty grim), so I'm hoping it's not quite as bad as it looks. Though, with today's tech, an X-ray might have caught it sooner.
She handled the chemo with Taxol and Herceptin pretty well back then. Now she’s starting chemotherapy using the CAP protocol. There isn't much info online about this specific one, so if anyone here has gone through it, could you share what the side effects were like and how effective it was? Any advice or helpful links would be appreciated.
Usually, I'm an optimist—I can find a silver lining in almost anything—but this is brutal. I'm done with "positive thinking." I don't get it anymore and I don't believe in it. Honestly, "positivity" just makes me angry. From what I can see, the more people push "staying positive," the worse things actually get.
First time posting here, but I think I’ll be sticking around for a while, because...
My sister was diagnosed with breast cancer. She had surgery about 5 or 6 months ago, but now metastases have shown up. They're in her sternum, femur, ribs, and liver. Not to mention the lymph nodes.
The bone pain started about two months ago. It hurts, but not enough to require heavy painkillers yet. An X-ray didn't show much, just the PET/CT scan (honestly, seeing those "spots" on the scans is pretty grim), so I'm hoping it's not quite as bad as it looks. Though, with today's tech, an X-ray might have caught it sooner.
She handled the chemo with Taxol and Herceptin pretty well back then. Now she’s starting chemotherapy using the CAP protocol. There isn't much info online about this specific one, so if anyone here has gone through it, could you share what the side effects were like and how effective it was? Any advice or helpful links would be appreciated.
Usually, I'm an optimist—I can find a silver lining in almost anything—but this is brutal. I'm done with "positive thinking." I don't get it anymore and I don't believe in it. Honestly, "positivity" just makes me angry. From what I can see, the more people push "staying positive," the worse things actually get.