Support resources for families dealing with cancer and other serious illnesses

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:That was well said... but did he actually provide any help, or was his presence simply incidental to the situation?

Yes, he helped immensely—I'll carry the memory of his warmth and humanity with me for as long as I live. For my mother, it was a blessing, truly.

Lisa White54 said:Do not sit around waiting for an oncologist. While you wait for her, have your primary care physician refer you to a specialist, perhaps an internist... anyone, really. Don't delay. If necessary, raise your voice, make threats, do whatever it takes. They are obligated to assist you. If you ask your GP to prescribe Durogesic and they refuse... then demand a referral to someone who actually can, and insist it be done immediately. Threaten to file a formal complaint if you must. I have navigated just about everything over these last six years. My first instinct would be to be polite, but that rarely yields results, so after that, I find myself resorting to threats, shouting, and arguing... one of those tactics eventually ignites a response. You must fight; you must demand help for your mother, because it is their duty. Truly, no one should be forced to endure pain. No one. And they shouldn't. Remind them that they too could wake up tomorrow facing a cancer diagnosis—that sort of reality check usually shakes them loose. Ask them if they could personally withstand such agony... Go ahead, shout, threaten, whatever it takes. They simply must help.
It is quite tragic that we are forced into such aggression, but if that is the only way to be heard, do not feel guilty. There is an organization called New Day... they maintain a website and a forum where cancer patients and their families gather. If you aren't already a member, visit their site; you will find plenty of practical advice there. An excellent oncologist even works with the association. If you need guidance, support, or anything at all, she will be there for you. She was a great help to me.
And... there is no giving up; you must persevere. I know how exhausting this is. Just remain persistent and brave.

Regrettably... it seems a certain level of aggression is required just to be acknowledged... that is simply the nature of our healthcare system, though believe me, it isn't much different in other parts of the country either.

Regarding pain management... I will offer only one observation, which is merely an example and not necessarily a universal rule. My mother underwent two major surgeries. After the first one, her body was essentially in shock. The pain was likely excruciating, but the doctor provided specific instructions... every time she complained of discomfort, give her a little scale, and have her rate the pain from 1 to 10. If it exceeds a 5, react and administer the medication. She never actually crossed that threshold of 5, even though it was obvious the pain was unbearable. I suspect managing that kept her on the path to recovery.

I am not suggesting that pain should be endured, but nor should the body be allowed to develop a tolerance... due to the instability of some patients, they may end up requesting increasingly higher doses.

And yes... stay persistent!!!! and demand everything that is rightfully yours!

ironsailor22 said:Lisa White54 The grim reality is that within our healthcare system, we are essentially left to fend for ourselves, as if no one truly cares... I once harbored the hope that patient advocacy groups, which are growing in number every day, might actually effect some meaningful change through collective action, but that hasn't materialized, and things only seem to deteriorate further.
For certain examinations or surgeries, one is forced to wait anywhere from six months to a full year, while those facing terminal illnesses seem to be met with absolute indifference. These patients aren't even admitted to hospitals despite their constant need for medical intervention—ranging from basic IV fluids to essential pain management injections. Consequently, people end up dying at home in agony, as if we were still living in the Middle Ages... We claim to want to be part of the standard set by Europe, yet we remain one of the few countries without a hospice integrated into the national healthcare system. Our outpatient pain clinics are utterly inadequate for managing cancer-related pain, which necessitates continuous hospital-based care and monitoring.
To give you an idea of the negligence, just a week before my mother passed, she was unable to consume any food or water, yet the visiting nurse insisted an IV wasn't necessary, claiming it would be too complicated because someone would have to stay by her side for hours, and they simply had too many patients to manage such a request. As for the pain that could no longer be managed with a Durogesic patch, she required injections every four hours, which was also deemed impossible since no one could visit six times a day. When I began looking for actual help, I discovered that the first private hospice has opened at Brezovica Villa, but the daily cost is approximately $100, which translates to $3000 per month... and I find myself wondering who among us could possibly afford such a thing.

Absolutely horrific...

So, Mom’s oncologist finally crawled back from medical leave, took one look at the labs, and told us she’ll be doing radiation and probably chemo via pills, though she didn't sound particularly optimistic about any of it... I can't even begin to imagine what Dad was going through when she broke the news to him 🙂

Robert Grant84 said:My mother's oncologist finally returned from medical leave, reviewed the results, and informed us that Mom will undergo radiation and likely oral chemotherapy, though she offered absolutely no optimism... I can hardly fathom what my father must have been feeling when she delivered that news 🙂

It has always eluded me why physicians, despite knowing that mental fortitude is such a vital component of recovery, feel the need to strip away any room for optimism. While one must remain realistic, there is no reason to approach treatment with the assumption that nothing positive can happen, given that no one truly knows how a disease will progress... Therefore, please, do not succumb to despair... allow yourself and your family the strength to fight through this entire therapy, believing you will emerge victorious on the other side! Hang in there...

Six years ago, my mom was diagnosed with uterine sarcoma. She went through surgery followed by chemotherapy, which actually managed to put things into remission for a while. Everything seemed fine for about a year and a half after that. Then, the back pain returned, leading to more surgery and radiation treatments.
Since then, she’s dealt with these absolutely excruciating pains in her leg, though we managed to find some temporary relief using homeopathic remedies. She also has a large growth on her head—which her doctor isn't worried about—and another growth on her sternum. About two years ago, before we started the homeopathy, the doctor gave us a terminal diagnosis. To manage the pain, she was using Durogesic patches, but they made her vomit terribly. (She still deals with nausea today, just less intensely; a homeopathic remedy actually helped stop the vomiting entirely during that worst stretch.) In the meantime, she underwent another round of radiation. Even though the constant nerve pain and numbness in her legs (switching between left and right) had subsided somewhat, everything has taken a sharp downward turn since New Year's. A poor-quality X-ray revealed metastases in her spine and neck. For about six months now, she's been in unbearable pain and has almost zero mobility—it's a massive struggle just to help her to the bathroom, and both my dad and I are providing constant support (she's even using a tripod cane now). Her right arm hurts too, and she's just completely drained of strength. Every day feels harder than the last, and today she had to start using adult diapers. Her doctor gently broke the news that we are reaching the end, though honestly, I suspect he missed the mark on that initial terminal diagnosis since he wouldn't give us any specific timeline back then. We consulted a physical therapist who told us her spine is in worse shape than anything he's ever seen. At this point, her primary doctor has essentially washed his hands of her and our family. We have a visiting nurse coming by, and my daughter has been an absolute hero helping out with Mom. Between all of this, my dad has lost 15 pounds over the last year and a half, and both he and I are at our breaking point—I'm working full-time, and Dad is currently unemployed. Mom's mental state is devastating; she just wants it all to be over. She spends most of her time lying down because the pain in her lower back is so intense (we suspect there might be metastases in her pelvis and hip as well). I’m not even sure if it has spread to her vital organs because the doctor won't order any more scans—he only ran blood work, which came back looking okay, so he mentioned the possibility of one last round of chemo (though he admitted to the nurse he’s afraid it might actually kill her). Other than that, she's relatively stable. Does anyone know of a good cream to help with the discomfort of being bedridden? What should we expect next? And how much time does she realistically have left? Wishing everyone luck in their own battles.

Nancy Hernandez43 said:I will never understand why doctors, knowing how vital mental strength is, don't leave room for optimism. Anything can happen, so there's no reason to walk around thinking nothing positive can occur—after all, nobody knows exactly how a disease will progress. So... don't lose hope. Give yourself and your loved ones strength, and believe that you will fight through the entire treatment like lions and emerge victorious! Hang in there!

My mother beat breast cancer years ago, but my brother passed away recently from stomach cancer. Having gone through all of this, I understand why doctors—when things are serious—don't leave space for optimism. They look at it objectively, medically, and empirically. They are rarely wrong, and truly, only exceptions seem to crawl out of terminal stages. Meanwhile, we always hold onto hope. It's true that every person's body and immune system is unique. Everyone has to fight for their own sense of optimism, while doctors provide us with the realistic picture. For example... when my brother was diagnosed, they basically ran him through the wringer in Seattle and advised us to do nothing because he had less than a year left. We didn't accept that; we didn't even tell him the prognosis, though he knew the diagnosis. He was naturally cheerful and optimistic. He decided to take the fight to the illness. In Chicago, they took him in, operated, and set up his therapy, though they again gave us a grim outlook. Before surgery, he had chemo to make him operable; he remained upbeat, convinced he would pull through... however, after a few months, he passed away. Even he felt the weight of it toward the end. On the other hand, my mother... who is generally a pessimistic, very realistic, sometimes even depressed woman. When they found her cancer a few years ago, the doctor said she would pull through, and we actually thought the opposite because of her mental state. But she made it... It isn't all in your head.
I am not posting this to discourage people from having a chance despite bad prognoses, but rather to point out that doctors are very good at providing a realistic assessment—sometimes it feels cruel, but it is truthful. And I should add... I am not taking the side of the medical establishment; I have had bad experiences, including instances of unethical behavior during the treatment of both my family members...

Lisa White54 said:Honey, my husband’s own doctor was diagnosed with lung cancer. And he’s still working. You’d think—honestly, you would think—that he’d show a little more empathy, seeing as he’s looking at this disease from the exact same angle now, but nope... he couldn't care less. Our last check-up was so bad, so incredibly cold, that I spent an entire week spiraling into a depression just because of how that doctor treated my husband.
It’s like, oh, it doesn't matter if my husband is hurting, nooo! There’s absolutely no need for any tests... nooo! We’re just imagining things! It's terrifying.
When they are the ones hurting, well, what then?! Does nothing matter then?? Is everything just irrelevant when it hits them too??

👍👍👍
I really admire what a fighter you are. Reading your posts on this forum over the last two years, you've been such an example to me of how a person can be stronger than anything else. 😉My husband and I have been fighting this for 27 months now, and we're still pushing forward.
Sending love to everyone on the forum—I truly wish cancer would just vanish from the face of the earth.🙏🙏🙏

Megan Fowler78,
so glad you popped up here. Honestly, I was wondering where you’d disappeared to and how everything was going with your husband. Thinking about both of you. You really are a fighter when it comes to him—just pure grit and heart.
Sending big love your way!

hollowmarlin66 said:My mom beat breast cancer ages ago, but my brother passed away recently from stomach cancer. I’ve been through the wringer, so I get why doctors don't leave much room for "hopeful vibes" when things look grim. They look at the facts—purely medical, purely empirical. And honestly? They’re rarely wrong; those rare miracle stories usually come from people who were already in terminal stages. But we, as families, always hold onto hope. Sure, everyone’s immune system works differently, that’s a given. You have to fight for your own optimism, but doctors? They just give you the cold, hard reality. For example... when my brother was diagnosed, they basically ran him through the wringer in Seattle and told us to just sit tight because he had less than a year left. We didn't really take that to heart, and we didn't even tell him the exact prognosis, though he knew what he was dealing with. He was a naturally upbeat guy. He decided to go head-to-head with the disease, so we went to Chicago where they took him in, operated, set up a treatment plan, but once again, the doctors gave us a bleak outlook. He did chemo first to make him fit for surgery, and he stayed positive, thinking he could beat it... but after a few months, he was gone. Even he felt the end coming. On the flip side, my mother... she’s more of a pessimist, a realist, sometimes struggles with depression. When they found her cancer a few years back, the doctor said she’d pull through, and we actually thought the opposite would happen because of her mental state. But she made it... So, no, it's not all just "in your head."
I'm not posting this to crush anyone's spirit or say there's zero chance despite bad odds, but I want to point out that doctors are incredibly good at assessing the reality of a situation—even if it feels cruel. It’s the truth. And just a heads up... I’m not exactly siding with the medical establishment here. I’ve had some pretty terrible experiences involving unethical behavior during the treatment of both my family members...

The thing is, there are no rules. Doctors make their best guess based on what they've seen before, but even they can't predict exactly how a disease is going to play out. We all want straight answers from them, but they don't have them. Disease hits everyone differently, and all you've got left is the fight. Some people get lucky, others don't... I am so sorry about your brother... Life is just plain unfair and brutal..
Hang in there, you're gonna need a lot of strength and patience for your mom.

stormynomad20 said:My mom had uterine sarcoma six years ago. She had surgery and chemo, which cleared it up for a bit. She was doing fine for about a year and a half. Then the back pain came back, she had more surgery, and went through radiation.
After that, she had these horrible leg pains that we managed to settle down temporarily with homeopathic remedies. She’s got this large growth on her head (doctors aren't worried about it) and another one on her sternum. Before we tried the homeopathy, the doctor gave us a terminal diagnosis, which was maybe two years ago. For the pain, she was using Durogesic patches, but they made her vomit like crazy. (She still vomits sometimes, just less; a homeopathic remedy actually stopped the vomiting during the worst part). In the meantime, she had another round of radiation. Even though the constant leg pain and numbness—either left or right—subsided a bit, everything started going downhill fast after New Year's. They found metastases in her spine and neck (based on a really bad X-ray). Basically, she's been in unbearable pain for about six months now. She can barely move; she’s in massive pain whenever we help her to the bathroom. (She uses a tripod cane). Her right arm hurts too, and she has zero strength. Every day feels worse, and she had to start using diapers today. The doctor told us nicely that it's the end, but I guess he already missed the mark with that earlier terminal diagnosis since he wouldn't give us a timeline. We talked to a physiatrist who said her spine is in worse shape than anything he's ever seen. Her doctor has basically given up on her and us. We have a visiting nurse coming by, and my girlfriend's mom has been a total hero helping out. Between all that, my dad (who lost 15 lbs in a year and a half) and I are reaching our breaking point. I'm working, and my dad is unemployed. Mom's mental state is terrible; she just wants it to be over. She's bedridden and her back is killing her (probably metastases in the pelvis and hip too). I don't even know if it hit her vital organs because the doctor won't run any more tests; he just did bloodwork, which looks okay, so he might consider one more round of chemo (he told the nurse he's afraid it might actually kill her). Other than that, she's relatively stable. Does anyone know a good cream for bedsores? What's next? How much time does she have left? Good luck to everyone fighting their own battles.

bedsores... there's some baby cream from Johnson & Johnson that works great for that...
Hang in there. I know how shitty it is to hear this stuff, but stay strong.

Joshua Thompson9 said:Are there any pressure sores from lying down? For that, some baby cream from Johnson & Johnson works wonders...
Hang in there—I know how much it sucks to hear stuff like that, but keep your chin up!!!

Thanks for the tip! We actually picked up some Activision gel from Abel, and it seems to be doing the trick. I really appreciate the support. That’s just how it goes—one day is better, the next is a struggle—but we aren't giving up that easily.

Does anyone have a need for these?
I have three patches left, the "size" 50 type (which actually measures about 21 square centimeters).
My grandmother was using them during her final few days, and these three were all that remained.
Sadly, she passed away last night after battling a rare bile duct carcinoma that had spread to the liver and beyond. 😢

hollowmarlin66 said:My mother beat breast cancer quite some time ago, yet my brother recently passed away from stomach cancer. Having navigated both, I find it quite clear why doctors, when facing severe cases, leave little room for optimism. They approach things objectively, through a medical and empirical lens. They are rarely wrong, and truly, only rare exceptions emerge from terminal stages. Meanwhile, we always cling to hope. It is true that every body and immune system is unique. Each person must carve out their own space for optimism, while doctors simply present the reality of the situation. For instance... when my brother was diagnosed, they ran him through the wringer in Seattle and advised us to do nothing because he had less than a year left. We didn't accept that; we didn't even tell him the prognosis, though he knew the diagnosis. He was naturally cheerful and optimistic. He decided to take the fight to the illness, so he went to Chicago where they took him in, operated, and set him on a treatment plan, though they once again warned us of the poor outlook. Before the surgery, he underwent chemo to make him operable; he remained upbeat, convinced he would pull through... however, after a few months, he was gone. Even he felt the decline toward the end. On the other hand, my mother... who is typically more pessimistic, a realistic woman, sometimes prone to depression. When they found her cancer years ago, the doctor said she would pull through, and we actually feared the opposite given her psychological state. But she made it... It isn't all just in one's head.
This post isn't intended to discourage people from having a chance despite grim prognoses, but rather to highlight that doctors are very skilled at assessing reality—sometimes cruelly, but truthfully. And I should add... I am not taking the side of the medical establishment; I have had my share of bad experiences, including instances of unethical behavior during the treatment of both my family members...

I am truly sorry for the loss of your brother. Whenever I think of my own... it is always difficult to hear that someone else is enduring the same thing, let alone something even more severe.

Unfortunately, there are no rules or sides here; there are only lives and the struggles within them. Every one of us encounters both good and bad experiences, fueled by the same singular wish: that everything turns out as well as possible.

In our case, I am glad the doctors were mistaken and that six months was transformed into four years. Perhaps one could call that luck... but life is not something one gambles with... it simply seems that the initial outcry and the desperate wish paid off, and we push forward, guided by the idea that "there is no tomorrow, only today."

In your situation, you know that the fight was fought and concluded without additional fears, agony, or unbearable pain, and that you gave everything you possibly could.

And I agree, it isn't all in the mind, which is why... please take care of your mother! Sending a big hug.

feralridge3 said:Does anyone need them?
I have three patches, "size" 50 (the actual size is 21 square cm).
My grandmother used them during her final few days, and these three were left behind.
Sadly, she passed away last night from some rare bile duct carcinoma that had spread to the liver and beyond... 😢

My deepest condolences...

How are you holding up? Please try not to let the discouragement take hold... the hardest part is accepting the loss right now, so stay strong...

feralridge3 said:does anyone need them?
I've got three patches left, "size" 50 (actual size is 21 square cm).
My grandma was using them during her last few days, and these three are what's left over.
Sadly, she passed away last night from some rare bile duct cancer that spread to her liver and a bit further. 😢

Sending my sincere condolences your way.

Regarding the Durogesic... when my brother-in-law passed away (about a year ago, give or take...), my sister gave me the Durogesic patches they had left from the 75mg dose because my husband uses the exact same thing. But get this—my local doctor's clinic actually demanded I return them TO THEM. Unbelievable! I was totally blindsided, like we’d committed some kind of felony or something! They claimed we aren't allowed to have more patches than what was specifically written on the prescription. Honestly, who are they giving them to without a script? And how?? We can only get Durogesic at the pharmacy, definitely not at the clinic!!!

So we ended up with zero stock, and then the pharmacies don't even have any in stock either (talk about a paradox!), and once I finally bring in a prescription, I have to wait two whole days just to pick it up.

stormynomad20 said:Six years ago, my mother was diagnosed with uterine sarcoma. She underwent surgery followed by chemotherapy, which seemed to work—she stayed in remission for about a year and a half. Then, the back pain returned, leading to more surgery and radiation treatments.
Since then, she’s dealt with excruciating leg pain, which we managed temporarily through homeopathic remedies. She also has a large growth on her head—which her doctor claims isn't concerning—and another on her sternum. About two years ago, before we turned to homeopathy, the doctor gave us a terminal diagnosis. To manage the pain, she used Durogesic patches, but they caused terrible vomiting (though a homeopathic remedy eventually helped stabilize that during the worst period). In the meantime, she underwent another round of radiation. While the constant leg pain and numbness fluctuated, everything took a sharp downward turn after New Year's. A poor-quality X-ray revealed metastases in her spine and neck. For about six months now, she has been in unbearable pain; she has almost no mobility and requires significant assistance from my father and me just to get to the bathroom (she uses a tripod cane). Her right arm hurts, and she is completely exhausted. Her condition deteriorates daily—she even transitioned to adult diapers today. The doctor gently suggested we are reaching the end, though I suspect he missed the mark on the initial terminal prognosis since he wouldn't give us a specific timeline. We consulted a physiatrist who told us her spine is in worse condition than anything he's ever seen. Her primary doctor has essentially given up on both her and us. We have a visiting nurse helping, and my partner's mother has been a hero assisting us. Meanwhile, my father and I are at our breaking point—he’s lost 15 pounds in eighteen months, and I'm working while he is unemployed. My mother’s mental state is dire; she just wants it to be over. She stays bedridden with agonizing back pain—likely metastases in her pelvis and hip as well. I don't know if other vital organs are involved because the doctor refuses to run further tests; he only checked her bloodwork, which looks fine, suggesting a potential chemo round—though he admitted to the nurse he fears it might kill her. Aside from that, she's relatively stable. Does anyone know of a cream to help with the sores from being bedridden? What comes next? How much time is left? Wishing everyone luck in their own battles.

I understand you far too well; I went through something very similar with my mother recently.
She had bone metastases that were incredibly painful, and watching her suffer without being able to help drove me to despair. Everyone just sent me running in circles, yet no one did anything concrete to actually assist her. I am bitter and angry at a healthcare system where patients like this are left to fend for themselves alongside their families. No one should have to die in such agony when modern medicine clearly has the tools to prevent it—it's just that nobody seems to care. It's appalling.
You didn't mention what she's taking for the pain now; my mother was on Durogesic patches the entire time, and the pain remained horrific. From the sudden decline to the end, it was only about two months for her, and it was pure agony.
I wish your mother minimal pain and suffering, and I wish you and your father immense courage and strength. Hang in there.

Lisa White54—this whole business with the patches isn't making sense to me either, since I had to return mine to the clinic myself.
When you get a prescription for patches, they hand over two copies—one goes to the pharmacy and the other to the police. They record your ID number on it, which essentially makes whoever picks them up legally responsible for how they're used—or misused. It really makes me wonder: what exactly does the clinic do with returned patches, and who are they actually giving them to?!?

ironsailor22 said:I feel for you—I truly do—because I went through something almost identical with my own mother recently.
She had bone metastases, which cause this incredibly intense pain, and it honestly drove me to despair because I felt so helpless watching her suffer. It felt like everyone was just passing us around from one department to another without actually doing anything meaningful to help her. I’m still so bitter and angry about how our healthcare system operates—it’s heartbreaking when patients like her are basically left to fend for themselves alongside their families. No one should ever have to die in that kind of agony; modern medicine absolutely has the tools to manage it, but it feels like nobody actually cares to use them properly. It's just awful!
You didn't mention what she's currently taking for the pain—my mom was on Durogesic patches the whole time, but even then, the pain remained unbearable. From the moment things took a sharp turn for the worse until the very end, it was about two months of pure, relentless agony.
I am sending so much love to your mom—I hope she finds some relief—and wishing you and your dad all the courage and strength in the world! Hang in there!

Thank you so much for the support, and my heart really goes out to your mother. She is currently using Durogesic (we're up to the 200 dose right now), plus a Tramal injection if the pain flares up more than usual. She’s also taking Zaldiar and Mizar. We are actually pushing for palliative radiation from the doctor—after about ten different requests—so I’m really hoping that finally provides some relief.