Support resources for families dealing with cancer and other serious illnesses

feralridge3 said:Do I fit in here with my anaplastic ganglioglioma?

Yes, you certainly do. If you're up for it, please join us. 🙂

Robin Stewart44 As if to say...
I have lost both of my parents to cancer... My father passed away from the most aggressive kind, enduring the kind of excruciating agony that is almost impossible to fathom—the sort of suffering you pray you never have to witness with your own eyes or feel with your own senses, though I know firsthand how difficult it is even to imagine before it actually happens...

I remember once asking an oncologist to describe the specific type of pain a patient experiences during the terminal phase... she didn't sugarcoat it, either. She told me to imagine someone taking a chainsaw to a limb while you're wide awake, without a single drop of anesthesia... that kind of agony is practically nothing, maybe a one out of ten, compared to what patients battling bone cancer endure. Since that diagnosis often involves the lymph nodes as well, it’s considered one of the most excruciating forms of suffering because the entire body is being overtaken... it's just the sensation of your very flesh and organs disintegrating from the inside out...

While my father was in his final moments, my mother was diagnosed with breast cancer... she went to that first follow-up appointment, or whatever they call it, and decided right then and there that she wasn't going to undergo treatment... for three and a half years, I watched from the front row as she navigated every single high and low of the illness, until finally, I saw her through to the end... in her own mind, she simply wasn't sick, and therefore, there was no need for any medical intervention... she had this massive, open wound spanning her entire abdomen that eventually healed over, but even then, in her mind, she remained perfectly healthy... she just gave up on life and accepted her fate, choosing not to pull the trigger herself, but rather allowing time to take its course...

With a critically ill person, reason often loses its grip on reality... Those standing by their side can struggle to truly grasp what is actually racing through those minds; we might witness the symptoms, but we can never truly know what they are feeling or the sheer magnitude of the pain they endure...

I was only in my early twenties when all of this was unfolding, so I struggled to process the weight of it all; there were so many truths that simply eluded me back then... but if there is anything I have gleaned from navigating both of my parents' illnesses, and something I find myself telling everyone constantly, it is this... when you see them suffering in pain, and the doctors refuse to administer any more morphine—because apparently, since they might only have three to six months left, medical protocols and ethical codes restrict the dosage to what is deemed "permissible," where anything beyond that is treated as if it were euthanasia—you find a way to get that morphine yourselves, by whatever means necessary, and you give them exactly as much as they ask for... when they reach the point where they can no longer eat, yet they still crave a slice of banana cake (which you must bake yourself or drive to the other side of New York City to find, knowing full well they won't be able to finish it because they physically cannot, even though the desire is so intense), you buy it, you bake it, you bring it to them... you provide those tiny, fleeting moments of joy during such incredibly heavy days in life...

And in the end, those of us left behind are the ones who carry the pain... and they lie when they claim that time heals all wounds; time doesn't heal anything, it simply makes the void and the lingering ache slightly more bearable... but then again, the agony they endure is of an entirely different nature—a physical torment so profound that even every medication in the world fails to soothe it as the body nears its absolute limits, only for everything to eventually reach its conclusion... therefore, one must be selfless and let them go, if there truly is no hope left... because what we desperately want—to keep them here just a little longer—is nothing more than prolonging their suffering... and the impact on both sides remains equally devastating... furthermore, please, never judge those who remain after losing a loved one; do not burden them, or yourselves, with rigid expectations or social conventions regarding how one should grieve... every patient faces their illness and suffering in their own way, just as everyone left behind must find their own unique path through the emptiness that follows a loss...

To everyone currently navigating the same path I walked ten years ago, please know that my heart truly goes out to you... I simply wish you wellness and an abundance of strength to endure the burdens life has seen fit to place upon your shoulders, and the courage to play outside the rules whenever circumstances demand it...

I feel a profound sense of regret that you had to endure such a grueling struggle against them at the very moment when you needed support the most... though perhaps you have grasped the most vital lesson life offers—that we must cherish every shared moment with our loved ones as a unique reservoir of strength to guide us through whatever comes next...

There is so much we fail to truly comprehend until we are forced to live through it ourselves... and once we do, we realize how misguided it was to judge others or to harbor the naive belief that such hardships only happen to someone else...

Time doesn't actually heal the loss of those we love, because their memory greets us every single day... we find them reflected in our own actions, our choices, and our deepest desires...

Please, continue to be brave... sending love...

Ashley Smith24 said:I have spent quite a bit of time contemplating why certain individuals choose to decline medical treatment. While it can certainly be an escape from the sobering realization of a terminal diagnosis, more often than not, it stems from a fundamental lack of trust in doctors and pharmaceuticals, an aversion to hospitals, or perhaps a hesitation toward specific diagnostic and therapeutic procedures... Such a decision should not necessarily be viewed as a sign of weakness or a lack of courage. I believe this, too, is a matter of bravery—just a different kind—favored by those who wish to live life to the absolute fullest until the very end, prioritizing quality of existence over mere quantity of days...

While I recognize that this is a deeply personal choice that warrants respect, it is undeniably painful. It is particularly agonizing when you realize that a loved one kept the truth from you until the final moments. You understand they were trying to spare you from suffering, which they undoubtedly succeeded in doing (at least during the period when you remained unaware), but I suspect it represents a profound loss for both parties—the one departing and the one left behind.

Typically, after such secrets are revealed, there is far too little time remaining to find closure. By that, I mean those long, soul-searching conversations about the past, present, and future that can soothe the spirit and ease the eventual parting. The reality is that when the end finally arrives, it tends to happen quite suddenly; the patient is often already hospitalized, and a sterile hospital room rarely provides the ideal setting for meaningful, intimate conversation...

I feel that all of this ought to be contemplated while one is still healthy and in full strength, so as to assist both oneself and one's loved ones during the inevitable moments that await us all. It is remarkably difficult to maintain rational thought at the exact moment one realizes, or even suspects, that they are facing a grave illness. This level of reflection should ideally be a fundamental part of how we live, rather than being treated as a taboo subject that most people simply avoid...

And thank you for your kind words regarding my mother; I have always been immensely proud of her, and I truly believe our separation is merely temporary. 🙂

You are most welcome. A kind word has the power to soften even the hardest of hearts...

Regrettably, what has passed is gone, and we cannot alter the course of history.

My mother faced her first bout of cancer when I was just a child. She told no one; she simply packed her things and left, and I grew up believing she had merely gone on a standard trip. Only once I was older was it disclosed to me that it had been a benign case, and she simply didn't want to burden us. Ten years after that incident... the diagnosis arrived that haunts us to this day. From the beginning, it was clear we were facing a grueling battle, and it was merely a matter of time. We engaged in long, heavy discussions, fraught with emotion... it wore us down, time and again. Today, four years later, my mother remains with us; her condition is currently at a status quo, but after everything she has endured, all the pain she has suffered, and the fear she carries... I do not contest any of her decisions, nor do I argue them...

However, I know it is not easy when this process unfolds so rapidly, unexpectedly, and painfully... but eventually, you will be a mother yourself, and you will recognize her resolve when you see it!

Stay strong!

slyseal28 said:Yes, you definitely belong here. If you can make it work, please join us. 🙂

I'll try my best to show up, but I still need to figure out my transportation situation. 😉

Nancy Hernandez43 said:Unfortunately, what’s done is done, and there's nothing we can do to change it now.

Sure, but maybe we didn't quite see eye to eye...

Even though I was talking about my own life, I was thinking more broadly. Just because I can't change my past doesn't mean someone else can't change things for the future. I'm not saying everyone should think like me regarding how much to share during those tough times, but I really believe we should tackle these issues head-on as a society instead of dodging them. It would help so many people. When things get critical, making decisions isn't easy, and sometimes they end up being the wrong ones.

My mom had her first cancer diagnosis back when I was just a kid. She didn't tell a soul; she just packed up and left, and I honestly thought she was just going on a normal trip. Once everything was public, I found out it was benign—she just didn't want to weigh us down. Fast forward 10 years from that incident... we're facing a diagnosis that still haunts us today. From the start, it was clear we were in for a massive fight; it was just a matter of time. We had these long, heavy, emotional talks... they wore us down more and more. Now, four years later, Mom is still here. Things are stable for now, but after everything she’s been through, all that pain and fear... I don't push back against any of her decisions, nor do I even argue about them.

I agree. Honestly, I think I’d do the exact same thing in your shoes.

Maybe I'm off base, but it feels like the bond you have now is actually the result of those intense, difficult conversations you and your mom had early on. You mentioned they drained you, but I truly believe they strengthened you. They're likely why you have such a solid relationship today. Correct me if I'm wrong...

Since you've fought so hard these last four years, I know you'll keep fighting. I'm rooting for you both to come out on top!

No, I know it's incredibly hard when this whole process happens so fast, unexpectedly, and painfully... but one day you'll be a mother yourself, and you'll recognize her decision instantly!

Hang in there!

I see you thought I was pretty young (probably because I was talking about my mom, and let's face it, we're always kids in those moments!), but I've actually been a mom for a very, very long time...

Stay strong! 🙂

Ashley Smith24 said:Of course, though perhaps we haven't quite seen eye to eye on this...

While I was reflecting on my own life experiences, I was really speaking in broader terms. What I cannot alter, simply because it belongs to the past, can be changed by someone else in the future. I am certainly not suggesting that everyone must adopt my perspective—regarding the necessity of being open during those harrowing moments—but rather that it would be immensely beneficial if we, as a society, encouraged dialogue surrounding this issue instead of merely sidestepping it. I suspect it would offer relief to many, given that making decisions during a crisis is rarely easy, often leading to choices that are quite misguided...

I concur. I believe I would have acted in much the same way had I been in your shoes.

Perhaps I am mistaken, but it strikes me that the bond you share is precisely the result of those long, arduous conversations you and your mother held at the beginning. Even though you mention those talks were draining, I suspect they actually fortified you, serving as the very foundation for the relationship you possess today. Please, correct me if I’m wrong...

Since you have fought so bravely over these last four years, I am certain you will continue to do so, and I truly hope that, in the end, you both emerge victorious. Both of you...

I see you've assumed I am quite young (likely because I spoke of my mother, and in those moments, we all remain children in some capacity!), but I am already a mother myself, and have been for a very, very long time...

Stay strong! 🙂

Ashley Smith24! If most of us approached things with your mindset... we would all be so much stronger! 😘I thought you were young based on the tone of your post, not because of any lack of maturity, but because you seem like someone whose mother truly needs her right now. Especially since she left your life so abruptly, and I am genuinely sorry for that.

I struggle to find the right words, but my mother and I never really had an especially close bond... so when the diagnosis came, it felt as though the person who had only just reached out her hand was slipping away before I even had the chance to truly know her. That is why our conversations were so lengthy, so sorrowful, so heavy, and filled with tears and anger... those emotions took their toll on her. It was only when I stood firm and said, "I refuse to stay silent about my grief," that she found her footing and the fight truly began.

Nowadays, it has become difficult—the agony seems to stretch on indefinitely. Her fear is so profound that a simple blood draw can trigger seven days of turmoil... and more turmoil... whenever she has to go for scans or checkups. That distress lasts for seven days and nights until the moment she actually has to leave. We didn't necessarily build a bond through that; rather, from the whole experience, I can say that I love her, respect her, adore her, and admire her, but I do not think I will force her into anything she does not wish to do...

Nancy Hernandez43 said:I'm not great at putting things into words, but my mom and I never really had a close bond. So when she got her diagnosis, I felt like I was losing someone who had just finally reached out to me without giving me a chance to truly know her first. Our talks were long, sad, heavy, and filled with tears and anger. All those emotions wore her down. It wasn't until I stood my ground and said, "I won't stay silent about this sadness," that she found her confidence again and the fight actually started.

I get it.

Just try to imagine if she hadn't said anything at all—if she’d kept her illness and her pain hidden the whole time. You might never have gotten this close. There would have been so many moments where you wouldn't understand why she was reacting the way she was, and worst of all, you wouldn't have had the chance to help boost her spirits when she needed it most.

You did it. Or rather, this is a win for both of you because you chose to be open and trust each other. That’s honestly the best thing we can give and receive during times like this.

I think I finally see why it will always be hard for me—because I didn't get the chance to be right there by her side, lifting her up and fueling her fighting spirit. Since I don't know the mental and psychological toll she went through, I couldn't share that burden with her. Even though I'm incredibly grateful and I respect her massive heart, her noble motives, and the strength she used to carry this heavy load alone for so long, I still feel like it was a mistake. People who love each other should have to go through this together.

It’s already so hard—the struggle feels endless. Her fear is so intense that even a simple blood draw turns into seven days of pure drama. Every time there's a scan or an appointment, the anxiety lasts for seven days and nights straight until it's time to leave. We haven't just built a relationship; from everything I've experienced, I can say I love, respect, and adore her. I admire her so much, but I won't force her into anything she isn't ready for.

I've been going through something very similar lately (actually, I'm in the middle of it right now, as doctors have been struggling for weeks to figure out what's wrong with me), so I know how it feels. There are moments when the fear is so overwhelming you can't breathe or even bring yourself to open a medical report envelope. In those moments, my husband and daughter are my rock—just having them there means everything. Please know that being there for your mom means the world to her. You're doing this together, and that matters.🙂

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.

ironsailor22 said:I’m going through this exact nightmare right now with a single parent dealing with bone metastases. Despite the patches, there isn't a single moment free from pain. Nobody in the house sleeps at night, and I’m honestly at a loss for how to help. I end up arguing with our family doctor every single time I ask for stronger patches, but he just refuses to prescribe them. Everyone talks about how pain needs to be managed and how patients shouldn't have to suffer, yet our healthcare system does absolutely nothing. You get the patches and that’s it. Whether they actually work or not seems to be nobody's concern. We’re living in the 21st century, and despite all the scientific miracles and high-tech advancements, people are still dying in agony and misery like it's the Middle Ages.
They tell you that you can live relatively long with bone metastases because the vital organs aren't directly threatened, but this suffering has been dragging on for three years now. It gets worse every single day. I just want this agony to finally end so she never has to feel this pain ever again.

Maybe try reaching out to Dr. Loncar— link to palliative care

He has an email and a cell number, and he works over at the Traumatology Clinic in New York City. To be honest, I've heard from several people that he's excellent...

Ashley Smith24 said:I understand...

Just try to imagine for a moment if she had told you nothing at all—if she had spent this entire time concealing her illness and her suffering from you... Perhaps you two would never have grown as close as you are now. It is quite likely that there would have been many instances where you wouldn't have understood her reactions, and worst of all, you would have been denied the opportunity to help bolster her much-needed self-confidence...

You managed to achieve all of this—or rather, this is your shared success—thanks to the mutual openness and trust you share. That is truly the greatest thing we can offer and receive during such difficult times...

I suppose this is why I will always find it difficult—because I wasn't given the chance to be by her side, to lift her spirits, or to encourage her fighting spirit. Since I know nothing of the mental and psychological anguish she endured, I couldn't share it with her, nor could I provide any support... Regardless of how immensely grateful I am to her, and despite my profound respect for the immense love, noble motives, and strength that allowed her to carry such a heavy burden alone for so long, I still feel that she made a mistake... people who love one another should have to endure these things together...

Recently, I went through (actually, I am currently going through) something very similar—as they have been unsuccessfully trying to locate the cause of my own serious health issues for weeks now—so I know exactly what it feels like. There are moments when the fear is so overwhelming that you simply cannot breathe, or even bring yourself to open an envelope containing medical results... In those specific moments, my husband and daughter are my greatest source of strength, through their mere presence and support. And please, rest assured that having you there, and having faced all of this together from the start, means everything to your mother...🙂

In any case... what matters most right now is that you make up for anything you feel you missed by focusing on your relationship with your husband and daughter! Still... no matter how difficult things get, please do not neglect yourself or your own health...

And I agree with you... we are all grateful, even if we don't always show it in the moment, though we truly are... everyone remarks whenever they see a photo of you together how genuinely close you are, which is such a rarity...

Stay strong, and I truly hope they find the cause of your issues very soon... kisses...

ironsailor22 said:We’re living in the 21st century, surrounded by all these scientific and technological miracles, yet people are still dying in agony and suffering just like they did in the Middle Ages.

I kept thinking the exact same thing when I was at the end with my dad. It was a total shock to me—how on earth can we invent the iPhone but haven't come up with anything meaningful to ease the suffering of our loved ones?😲

I am so incredibly sorry for everything you're going through.😢 Hang in there! :*

ironsailor22 said:I get into arguments with my family doctor every single time I ask for stronger painkillers, but he just refuses to prescribe them. Everyone talks about how pain needs to be managed and how patients shouldn't have to suffer, yet our healthcare system does absolutely nothing about it. You get your patches, and that’s it. Nobody even cares if they actually work or not. We’re living in the 21st century, and despite all the scientific breakthroughs, people are still dying in agony like it's the Middle Ages.

😢

We’ve had a very similar experience.

Even though my mother was in the hospital under constant medical supervision, nobody seemed to notice her pain was getting much worse.
In fact, during those last fifteen days, she completely lost her voice. I could only hear her if I pressed my ear right against her mouth, and eventually, even that wasn't possible. She couldn't tell anyone how much she was hurting or that the painkillers she'd been getting weren't cutting it anymore. She just suffered in silence until she finally managed to signal us, and only then did we step in. Even then, the patches they gave her barely helped—the pain stayed intense. With all those daily rounds by the staff, it never occurred to anyone to actually lean down to a terminal patient and ask if their dosage needed an increase...

I really hope the info from slyseal28 helps you and that things get at least a little bit better... 😢

A few months back, my dad started having trouble eating—he’d feel full after just a couple of bites, he was nauseous every morning, and his stomach pain was constant. Since he deals with severe gastritis, he thought he knew the drill, but he hates doctors and hospitals, so it took everything in him just to agree to a gastroscopy. As soon as the scope went down, the doctor couldn't even hide her shock. She just blurted out, "God, what am I looking at?"
It was a total shock—my dad has cancer. He isn't even 49 yet...
He had surgery to remove his entire stomach, along with some surrounding organs and four lymph nodes.
The cancer formed in the exact same spot where he had an ulcer twenty years ago—right at the intestinal junction.
He was prescribed six cycles of chemotherapy, three days on and three weeks off. During the second cycle, his hair started falling out; that was when I realized just how fragile a human being actually is and how much the small things define us. The third cycle hit him the hardest—there were two days where he didn't even have the strength to walk to the bathroom. Luckily, that lack of energy was his biggest struggle, because he wasn't dealing with nausea or vomiting, which was what he feared most. He lost 30kg. He used to weigh over 100kg, and his oncologist says that extra weight actually helped save him. Now, he tracks every single pound. Sometimes he reminds me of myself when I was younger, except he’s terrified of losing any more weight.
Sometimes he struggles to swallow, and other times he’s "full" after two bites. He’s still learning what he can eat and what triggers him. About eight months post-op, he started eating everything he used to, just in smaller portions.
Occasionally he overdoes it... and then Mom has to practically force him away from the table because if he doesn't know when to stop, his intestines start acting up.
He cut sugar out entirely (since sugar feeds tumor cells), but then he started shaking and feeling faint from the lack of it, so sometimes he’ll have a little chocolate or a pastry.
Now, finally, he’s allowed to have a glass of water right after a meal, because part of his intestine was extended into a pouch, so it at least looks somewhat like a stomach. Before this, he couldn't drink anything because the liquid would just wash everything straight through.
A year after the diagnosis, my dad isn't the same person. He’s quiet, and I see him looking at us with this lingering sadness. He’s turned to faith—every morning and night he prays, "God, please let me see my grandson grow up." He’s much calmer about things now; if a job doesn't go well, he doesn't sweat it. He spends more time with Mom. They were always close, but now he’s essentially dependent on her. And she... she’s aged ten years in this one year. It hit her hardest when she saw him bald; that was the only time she let a tear slip (until I ended up yelling at her). Nowadays, when he gets discouraged, she yells at him and tells him she’s going to leave him—reverse psychology, she knows what she’s doing—and then he snaps out of it and goes back to being his old self. It’s a constant cycle.
From day one, he said he would beat this because he has something to live for. I think my son is what gives him the strength to face each new day; he even told my husband once, "The kid was born at the perfect time."

Don't show them that you're struggling or that you're constantly thinking about how hard it will be when they're gone. A huge part of this illness is psychological. Let them focus on their work, let them run, ride bikes, or do whatever makes them happy—just don't let them dwell on...
A bit of advice for everyone: don't spend all your time on websites reading about other people's experiences. To this day, I’ve only Googled "stomach cancer" once. Believe me—it won't make you love them less, and it won't make their illness any less significant in your lives, but you'll feel better. You aren't helping yourself or them by being pessimistic. According to his diagnosis, my dad has about one year left. Where would I be if I spent every second thinking about that?
I DON'T WANT TO THINK ABOUT IT! We are going to beat this together, and my dad is going to watch my son grow up, go to school, get married, and have kids of his own.

Sending strength to everyone. 😘I 🙂



ironsailor22 said:I'm going through this right now with just one parent dealing with bone metastases. Even with the patches, there isn't a single moment without pain. Nobody in the house sleeps at night, and I honestly have no clue how to help. I end up arguing with our family doctor every single time I ask for stronger patches, but he just refuses to give them to us. Everyone talks about how pain needs to be managed and how patients shouldn't have to suffer, yet our healthcare system doesn't actually do anything about it. You get the patches, and that’s it. Whether they actually work or not—nobody seems to care. We're living in the 21st century, and despite all the scientific miracles and tech we have, people are still dying in agony and misery like it's the Middle Ages.
They tell you that with bone metastases, you can live relatively long because the vital organs aren't threatened, but this suffering has been going on for three years now. It gets worse every single day. I just want this agony to finally end so she never has to feel pain ever again.

When my dad was diagnosed with late-stage cancer, one doctor told me we could pick up morphine at a pharmacy in Canada since they stay really well-stocked over there.
Thank God we didn't actually need it, but hey, maybe it might help you. 🙂

Robin Stewart44 said:I lost both of my parents to cancer... My dad passed away from the absolute worst kind—the type of suffering that’s hard to even wrap your head around unless you've actually had to witness it with your own eyes and feel it in your soul. Honestly, if you haven't seen it firsthand, it’s almost impossible to truly grasp how brutal it can be. I know I couldn't imagine it before it happened.

I remember asking one of the oncologists once how she’d actually describe the kind of pain a patient goes through during that final stage. You know, when things are really hitting the wall. She didn't sugarcoat it, either. She told me to imagine someone taking a chainsaw to one of your limbs—completely raw, no anesthesia, just pure agony. And then she said that, compared to what patients with bone cancer feel, that chainsaw scenario is nothing. Like, maybe a 1/10 on the scale. Because when you've got bone cancer combined with lymph node involvement—which is basically considered the absolute worst because it spreads through your entire system—it feels like your very flesh and everything inside you is just... disintegrating from the inside out. It’s heavy stuff.

While my dad was on his deathbed, Mom gets hit with a breast cancer diagnosis... She went to that first follow-up exam or whatever, and then just decided right then and there that she wasn't going to do any treatment. For three and a half years, I was right there, watching everything—feeling all her highs and lows as the illness took hold—until I finally had to say goodbye. In her own mind, she just wasn't sick. There was no need for doctors or anything. Even when she had this massive, open wound running across her entire abdomen that eventually scabbed over... in her head, she still wasn't sick. She just gave up on life. She accepted her end. She didn't pull a trigger or anything, she just let time take its course...

When someone is dealing with a really heavy illness, their mind often starts to drift or slip away from reality. Honestly, those around them can barely wrap their heads around what's actually happening inside that person's brain. We might see the symptoms, sure, but we’ll never truly grasp what they’re going through mentally, or just how much raw pain they're enduring... It's something you just can't fully touch.

I was only in my early 20s when all of this was happening, so honestly, it was a lot to process back then. There’s so much I know now that I just didn't get at the time... but if there's one thing I’ve actually learned from watching both of my parents go through their illnesses—and it's what I tell everyone—it's this: when you see them suffering in pain, and the doctors won't give them any more morphine... well, because apparently, if they only have maybe 3 to 6 months left, hospital protocols and ethics codes limit how much they're allowed to prescribe. Because anything beyond that is treated like you're trying to perform euthanasia or something. Just find a way to get that morphine. Get it however you can. Give them whatever amount they ask for. And when they reach that point where they can't even eat anymore, but they still crave something specific—like a banana cake (which you probably have to bake yourself or drive across town to pick up, knowing full well they won't be able to finish it, but they want it so badly)—just buy it, bake it, bring it. Just give them those tiny little "joys" during the hardest days of their lives.

And in the end, we’re the ones left behind picking up the pieces... stuck in this constant ache. People love to lie and say that time heals all wounds, but let's be real—time doesn't heal a damn thing. It just makes that massive hole in your chest and the pain you're carrying feel slightly less unbearable. But honestly? The pain they're going through is on a whole different level. It’s physical, it’s brutal, and it’s heavy enough to crush anyone, no matter how much medication you throw at them once the body hits its absolute limit. Everything just ends eventually. That's why you have to be selfless. If there's no hope left, you have to let them go. Because what we want—having them stay with us just a little bit longer—is actually nothing more than prolonging their agony. In the end, the outcome is the same for everyone involved. Also, please, stop judging people. Don't judge those who are left struggling after losing someone they love. Everyone handles this kind of grief differently, so don't try to force anyone—including yourself—into some neat little box of "socially acceptable" grieving or follow some arbitrary rulebook. Every patient fights their battle in their own way, and every person left standing carries that loss in their own unique, messy way.

To everyone going through exactly what I went through ten years ago—honestly, my heart goes out to you. I just want nothing but the best for you all. I hope you find the strength to carry whatever weight life decides to dump on your shoulders right now, and more importantly, I hope you have the guts to play outside the rules if that’s what the situation demands...

Thanks for this post and for such an exhaustive breakdown. Even if it was a bit of a heavy read, it actually helped... because now it feels a lot easier to accept, with God's blessing, the fact that my dad is gone. It's a relief he went quickly. Thank you.😘

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.

ironsailor22 said:A huge thanks to slyseal28 and everyone else for all the advice!
I'm just completely lost right now and honestly don't know what the best move is. So, about a week ago, I picked up a used wheelchair, but we're really only using it to get her from the bed to the bathroom and back. Even then, it’s a lifesaver since she can't even manage a single step on her own anymore. Now, I really need to look into getting a medical bed, because trying to prop her up in a position where she isn't in constant pain just to get some sleep is becoming a total nightmare.
I spent the entire afternoon sitting in the waiting room at the Dugava Health Center today, just waiting for their computer system to actually work so I could grab a prescription for stronger patches. It is absolutely ridiculous that an entire healthcare IT system can be down for an entire afternoon, leaving nobody in the whole clinic able to get a referral or a script—and apparently, this happens all the time. So, tomorrow morning, I'm heading back to the doctor again, praying I actually walk out with those patches. It's just typical... it takes two whole days just to deal with one simple prescription.

Are you tackling all of this on your own, or do you have some help?
Is it your mother (assuming it is, if not, my bad) that you're caring for at home, or...? Sending you so much support and a massive hug 🙂, I truly know how you feel...🙂

ironsailor22 said:A huge thanks to slyseal28 and everyone else for the advice!
I’m honestly spinning right now and have no clue what the best move is. About a week ago, I picked up a used wheelchair, but we really only use it when I’m maneuvering her from the bed to the bathroom—even then, it’s a lifesaver because she can't manage a single step on her own anymore. Now, I really need to get a medical bed; trying to prop her up in a position where she isn't in constant pain just so she can sleep is an absolute nightmare.
I spent the entire afternoon sitting in the waiting room at the Dugava Health Center today, just waiting for their computer system to come back online so I could pick up a prescription for stronger patches. It is unbelievable that a healthcare IT system can be down for an entire afternoon, leaving absolutely no one in the whole clinic able to pull up a referral or a script. And this isn't a one-time thing; it happens all the time. So, tomorrow morning, I’m heading back to the doctor again, praying I actually walk out with those patches. This is just how things work here—it takes two full days just to get one simple prescription.

Caritas has commode chairs with wheels in stock. They're basically stools with a built-in toilet. I’d put my mom on one of those and wheel her right over the toilet so she could go directly into it. It meant so much to her, honestly, because she still had that sense of privacy in the bathroom. I was the first one to grab a chair like that from Caritas (later I bought a new one at the hospital which cost about $400), and all you have to do is submit a request along with her medical history. You just write that you're in a tough spot financially and can't afford a specialized chair that would make caregiving so much easier. The key is to emphasize why having wheels is vital—specifically for moving her around the house, since they're basically the size of a standard chair. I used that chair more than anything; the standard wheelchairs mostly just gathered dust unless we were heading to the hospital. We actually got that one through a reimbursement from the CHIF after they approved the diagnosis code.
The same goes for hospital beds; Caritas often has them in stock too, so it’s worth asking.
Your other option is to call local nursing homes and ask if they have any hydraulic beds available for loan or rent. They might charge a fee of up to $300-$133 a month, but that is pocket change compared to the relief you get from having a bed like that. Make sure you also ask about an anti-decubitus mattress with an air compressor. Those things are amazing. It looks like an air mattress where a compressor constantly pumps air in, causing the mattress to vibrate slightly to boost microcirculation. My mom was completely immobile for a year and a half, and thanks to that, she never developed a single pressure sore.
Strict hygiene is absolutely critical to prevent infections. Definitely coordinate home health nursing through your primary care physician. It is such a massive relief to have a professional come in to handle personal hygiene—washing her, changing her, doing a full sponge bath once a week. On top of that, I’d wheel Mom into the bathroom once a week on that commode chair to give her a proper shower. She always came out smelling like a little doll. She loved using soaps from Lush... bless her heart.

My husband has been struggling for about a year now, and for the last seven months, we’ve been facing a diagnosis of ventricular adenocarcinoma, with metastases in the liver and lungs... it is such a heavy, overwhelming diagnosis to carry. When you look at his tumor markers—CEA at 569, CA 19-9 at 3971, CYFRA 21-1 at 340—it looks absolutely terrifying on paper. It makes you wonder, doesn't it? How much can a person actually endure, and how much weight can a single sheet of medical results truly place on a soul? He is still working, though at 53, he’s currently applying for retirement; mentally, he remains incredibly strong, still driving himself around, still fighting. He has already gone through six rounds of chemotherapy, but unfortunately, they haven't yielded any results, which the oncologist says makes them essentially futile. Since I don't have a medical degree, I just do what I can at home, brewing him teas made from nettle, red clover, fennel, and angelica. I refuse to let him just surrender to the bed or sink into despair, because I care for him so deeply, and honestly, he just loves life, people, and our family so much. This happened to us, yes, but we aren't without hope. I come to this forum to read through these pages, searching for positive stories and bits of advice; when I see someone who has successfully undergone surgery, I can't help but feel a sense of joy for them. I even read that story about the woman who treated herself with herbs, chamomile, and wine... it's simply incredible. I am searching for any other treatment possibility for my husband, and I find myself wondering: is it true that M. Douglas actually managed to overcome cancer, or is that kind of success reserved only for the wealthy? What are we supposed to do, being just an ordinary family?

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.