Lisa White54—the sad reality is that within our healthcare system, we are essentially left to fend for ourselves; nobody actually cares. I used to think that patient advocacy groups—which are growing by the day—might actually manage to push for meaningful change through collective action. It hasn't happened. If anything, things just continue to deteriorate. Waiting lists for certain exams or surgeries stretch from six months to a full year, yet for those in the terminal stages of an illness, it seems absolutely nothing is being done. These patients aren't even admitted to hospitals despite needing constant medical support—everything from IV fluids to pain management injections. Consequently, people end up dying at home in agony, as if we were living in the Middle Ages. We claim to want to be part of the standards found in Europe, yet we are the only ones without a hospice integrated into the national healthcare system. Our outpatient pain clinics are practically useless for treating cancer-related pain, which requires consistent hospital-based care and monitoring. I should mention that a week before my mother passed, she couldn't eat or drink anything. Yet, the visiting nurse insisted she didn't need an IV, claiming it was "too complicated" because someone would have to stay by her side for hours—and apparently, they had too many other patients to make that possible. For the pain that could no longer be managed with a Durogesic patch, she needed injections every four hours. That was also impossible; who was supposed to show up six times a day? When I looked into who could actually help her, I discovered that the first private hospice in the country has opened at Brezovica Villa. One day costs about $100, which adds up to $3000 per month. It makes me wonder: who among us can actually afford that?
Robert Grant84 said:The oncologist has been out on medical leave for two weeks now—and apparently, nobody else has the guts to actually review the discharge papers or the medical history...
Our healthcare system isn't just slow and inefficient; it’s profoundly inhumane. You endure excruciating pain only to be brushed off by everyone involved—zero action taken. I went through this exact nightmare with my mother, so I know exactly what you're feeling. Even now, a month after her passing, the anger and resentment feel even sharper than before. Because our medical system failed to do anything meaningful, she died in significant pain and suffering. An ER doctor once told me that in this day and age, no one should ever have to die hungry, thirsty, or in agony. How beautiful that sounds—and how many light-years away it sits from our actual reality.
brisksurfer said:isn't it a sin to just stand by and watch people suffer through such agony? 😲
I truly wonder—if they found themselves in that position, would they be searching for a cure for themselves, or for their loved ones?...
I couldn't agree more. Watching someone endure such torment without intervention can't be justified by any reasoning—certainly not medical ones. The same goes for when it involves their own skin; having seen it firsthand, I know they will do absolutely everything at their disposal. It’s quite telling—they might get admitted to the hospital for pain management under constant anesthesiologist supervision, receiving direct spinal injections, while the rest of us "ordinary mortals" are sent to outpatient pain clinics. Those clinics are practically useless—you show up, get a few nerve blocks that stop the pain until tomorrow morning, and then you're right back where you started. It implies you should be trekking back to the clinic every other day, assuming you're even physically capable of moving through that much pain. It's absurd.
Robin Stewart44 said:I'll say it again—every cancer is brutal, but bone cancer is easily the worst. Tomorrow marks ten years since my father passed, and I can still feel it like it was yesterday—the way he would scream at every single thing. A wrinkle on a shirt, a sip of water... everything. Or nothing at all. He just screamed constantly. Twenty-four hours a day. At that stage, morphine barely touches it; it might take the edge off slightly, but the pain remains absolutely maddening.
You say you don't know how to help... unfortunately, there isn't any. I'm sorry if that sounds blunt, but there simply isn't a solution. Another terrible part of that experience was how hospitals in New York City wouldn't even admit a patient like that when they were terminal (and back then, I knew someone at every facility, yet even that didn't work). I wonder if things are still that way today?
My father was on liquid morphine... I don't know much about these modern patches. His primary care doctor had to write a new prescription almost every single day because you couldn't get more than a few doses at once. I ended up carrying that morphine to the hospital myself because they didn't have enough on hand... yes, it was that awful. Doctors are restricted to specific amounts—which is why you end up fighting with the family physician. They are allowed to give up to a certain dose and no more, otherwise, they could face criminal charges for essentially performing unauthorized euthanasia.
I’ve been out of that world for many years now, so I have no idea where one would find morphine through unofficial channels. But, if I were back in that situation—without a second thought or a moment of hesitation (back then I was only twenty and still naively trusted the doctors and everyone else)—I would try to find it by any means necessary just to give it to my dad/mom. Just so they wouldn't hurt. Just so they wouldn't moan, or wail... Not because I couldn't sleep from the screaming, but because they were in pain, and you feel so utterly helpless watching it happen.
It seems like three years is quite a long time to fight this type of cancer; I'm surprised no vital organs have been affected yet. Where is the primary tumor located? I am so incredibly sorry you are all going through this misery for such a long time. I wish you all the strength, courage, and wisdom in the world.!!!
The primary cancer is breast cancer, and her doctor's prognosis was about two years because the bone metastases were caught immediately. Since then, they've just continued to spread throughout her entire skeleton. She actually just hit her one-year mark this past Thursday, but within a single month, her condition took a horrific turn; she went from being mobile to completely bedridden. Within those four weeks, we tripled the dosage on her patches, and now she finally sleeps at least through the night. Every movement causes her pain. I managed to scrape together the funds and bought a medical bed with an anti-decubitus mattress today. It should be delivered and set up tomorrow morning, so I'm hoping it brings her some relief. I don't understand why we have to argue with the doctor every single time just to get her a stronger dose. What is the logic behind it? Isn't providing mercy to patients in this state actually the most humane thing to do?
Grace Campbell88 said:Are you tackling this alone, or do you have some help? Is your mother—assuming it's your mother, my apologies if I'm wrong—the one you've chosen to care for at home, or...? Sending you so much support and a huge hug 🙂. I know exactly how you feel...🙂
Thanks for the support. It is my mom, and it's just me. Her sister steps in occasionally, but that's about it. Also, thanks to Angela Wright for the practical advice; I'll definitely be taking it to heart. The real issue with my mom is the intense pain in her ribs, back, and pelvis—any movement at all is agonizing. I need to get a hospital bed and an anti-decubitus mattress ASAP, as her mobility is declining by the day. Just a month ago, she could still walk a little on her own; now, she can't even get out of bed or manage a single step.
A huge thanks to slyseal28 and everyone else for the advice! I’m honestly a bit overwhelmed right now and struggling to figure out my next move. About a week ago, I picked up a used wheelchair—we really only use it to get her from the bed to the bathroom and back, but even that makes a world of difference since she can't manage a single step on her own anymore. Next on the list should be a medical hospital bed; trying to get her positioned comfortably enough to actually sleep without constant pain is becoming an absolute struggle. I spent the entire afternoon sitting in the waiting room at the Dugava Health Center today, just waiting for their computer system to stop glitching so I could finally get a prescription for stronger patches. It’s frankly unbelievable that a healthcare IT system can be down for an entire afternoon, leaving nobody in the whole clinic able to process a referral or a prescription—and apparently, this happens all the time. So, tomorrow morning, it's back to the doctor's office again, hoping against hope that I'll walk away with those patches. This is just how things work here—it takes two full days just to secure one simple prescription.
Robin Stewart44 said:I lost both of my parents to cancer... My father passed away from the most brutal kind, enduring the kind of agony you can barely fathom—though if you haven't seen it with your own eyes, it's almost impossible to grasp...
When I once asked an oncologist to describe the level of pain a patient experiences during the terminal phase, her answer was chilling: she told me to imagine someone being sawn through a limb with a chainsaw, without any anesthesia. That, she said, wouldn't even be a fraction of what bone cancer patients feel—often considered the absolute worst because the disease ravages the entire body from the inside out as everything begins to break down...
While my father was in his final days, my mother was diagnosed with breast cancer... She went to one follow-up exam and simply decided she wasn't going to pursue treatment. For three and a half years, I watched her every struggle, every peak and valley, until I finally had to say goodbye. In her mind, she just wasn't sick; there was no need for medicine. Even with a massive, open wound across her abdomen that eventually scabbed over, she refused to accept the diagnosis. She didn't pull the trigger herself, but she surrendered to life, letting time take its course...
With a critically ill person, logic often takes a backseat... Those around them can rarely truly comprehend the mental landscape they inhabit. We see the symptoms, sure, but we never truly know the depth of the internal torment they endure...
I was only in my early twenties when this all unfolded, so I struggled to process it; there was so much I didn't understand then. But if I've learned anything from watching both my parents fight, it’s this: when you see them in pain and the doctors refuse to provide more morphine—perhaps because their protocols limit dosages for patients with only months left to live to avoid accusations of euthanasia—find a way to get it. Get it by any means necessary. Give them whatever they ask for. When they can no longer eat, but they suddenly crave a banana cake (which you might have to bake yourself or drive across town to find, knowing full well they won't actually finish it), make it happen. Provide those tiny "joys" in the midst of such darkness...
I am currently living through this exact nightmare with one parent who has bone metastases. Despite the patches, there isn't a single moment free from pain. Nobody sleeps at night, and I am at a total loss as to how to help. I find myself arguing with our family doctor every single time I ask for stronger patches, but he simply refuses to prescribe them. Everyone talks about how pain should be managed and how patients shouldn't have to suffer, yet our healthcare system does nothing. You get some patches, and that's it. Whether they actually work or not seems to be nobody's concern. We live in the 21st century, surrounded by scientific miracles, yet people are still dying in agony as if we were in the Middle Ages. They tell you that with bone metastases, you can live relatively long because the vital organs aren't immediately threatened. But this suffering has dragged on for three years now, getting worse every single day. I just want this agony to end—I just want her to never feel pain again.
brisksurfer said:ironsailor22, I wasn't suggesting you were making things up—I just don't understand how this shifted so quickly, considering what I'm discussing was still the standard back in April.
It’s disheartening to hear things have become so complicated (likely due to a higher patient volume)—because, honestly... after being left to fend for myself during those darkest moments, having the Association step in without any red tape was such a massive relief. The worst part? If we had been forced to jump through these hoops, my father wouldn't even have made it to the oxygen stage.😢
To actually make it to, that's exactly the point—which is why I'm so frustrated by this senseless bureaucracy. In a month or two, we probably won't even need the wheelchair anymore. I'll find a way to manage; even if it's pricey, I'll just rent one for a few months.
Angela Wright said:Look, ironsailor22, I completely get where you're coming from—but honestly? You’re taking your anger out on the wrong people. This whole mess isn't about whether the volunteers are doing their jobs; it's a systemic failure within the healthcare system. People turn to these grassroots initiatives and local Associations just to survive because the government hasn't set up a functioning protocol for this kind of thing. By nature, we tend to be stubborn and principled—it's in our DNA—but if my mother's illness taught me anything, it's that sometimes you have to swallow your pride and deal with the very people you'd rather hit with a nail-studded club just to get things done. That's just how I see it. Life is a rigged game.
There is so much truth in what you wrote. I agree with every single word, from start to finish. You're right—life is a rigged game—but I have to keep playing it. I don't have any other choice.
Angela Wright, there’s really no need to thank me—verifying the facts is always a good move. I’ve decided to stop seeking help through these channels. Honestly, what’s the point of waiting for some home visit from a doctor when you're dealing with painful bone metastases? When you can't even walk anymore—which is pretty obvious from three kilos of medical records—you need a wheelchair right now, not in a month or two. Even if money is tight, I'll find a way to manage without relying on volunteers.
Come on, people—I can't be making this up. It was laid out for me quite clearly: first, you have to register with the Association, then a doctor will conduct a home visit—whenever she manages to find the time, of course, since she’s a volunteer handling somewhere between 130 and 160 patients (I didn't catch the exact figure)—and only after all that can the request be approved. We are talking about a wheelchair for a woman battling bone metastases; she can still sit for now, but that won't last much longer, at which point the chair becomes a moot point anyway. I'll say it again: everyone is more than happy to offer "help" in theory, but the moment you make a specific request, they brush you off with a mountain of excuses. Honestly, I am exhausted by these empty promises.
It seems nothing ever works quite the way it’s advertised—just a bit of verified info here, in case anyone ever finds themselves in need. Over on another forum, John Doe posted about how an American Hospice Association supposedly provides all the necessary oncology care equipment for free. All you were allegedly supposed to do was call them up and show up with a medical history and an ID. I went ahead and checked that out myself, only to find out it isn't true—and the actual process is far from simple. First off, the patient has to be officially admitted to hospice. Then, you have to coordinate a home visit with a doctor, who will then evaluate whether the requested equipment is actually necessary. And keep in mind, this only applies to patients in the terminal phase living within the Washington, D.C. area.