Support resources for families dealing with cancer and other serious illnesses

Nancy Hernandez43 said:Forgive me, Jane... I'm a little out of the loop here... but it feels like this response is more than positive, it's just that... in our situation, we're constantly at war with the doctors and fighting them on every single front. I'm going to take some time tonight to really dig into all of this... then I'll provide a much more detailed comment.

kiss

That is their official answer. So, please direct any criticisms, suggestions, or questions toward them, not us. I was simply fulfilling an official duty, if you want to call it that, because I felt that if we have information, we shouldn't just pass it around on our forum; we should post it here too so it isn't just "he said, she said," but rather someone's official word with actual accountability behind it.

I have my own personal opinion on the matter, but I think I'll keep it to myself.

Angela Wright said:Whether or not you get coverage for supplies—diapers, pads, underpads, oxygen concentrators, and so on—is entirely up to the healthcare system, specifically the CHIF. Any issues regarding nursing supplies or home care equipment (like walkers...) should be handled primarily through a family doctor. That is how you find out what rights you can actually exercise.

Angela, thanks for posting this memo here.

What she wrote above is absolutely fascinating... especially because our doctor at the Jordanovac clinic just gave us this blank, pale stare when we brought up oxygen (which my father desperately needed in his terminal stage, yet the hospital refused to keep him!). And when I told him we ended up sourcing it ourselves, he didn't even bother to ask where we got it! You'd think he'd want to know if it could help others. But sure, "just talk to the doctors..." 🙂 🙂

Even though this is my first time actually posting here, I’ve been lurking for about a year and a half now, and honestly, you guys have been such a huge comfort to me. @Angela Wright/">@@Angela Wright, I don't even know who you are, but I know you've walked through pure hell, and I just want to thank you from the bottom of my heart for being here for everyone who—by some massive cosmic mistake—has had a loved one ripped away, and for those still out there fighting their own Nemesis.
My fighter lost his battle with MF 4 glioblastoma today at age 43. This was the man I grew up with, the one I called "my brother" my entire life. What we had went way beyond just friendship or blood. We had that perfect childhood together, and then that wild youth where we'd constantly bail each other out of trouble with our parents—or get ourselves into it! My parents see him as their own son, and my husband sees him as a brother. And today, he finally went to be with his dad, somewhere he can finally sleep and where the pain can't reach him anymore. Somewhere he can walk and run and talk and watch over us.
But me? I have no clue how to lift this literal boulder sitting on my chest. I don't know how to stop the crying, how to deal with this overwhelming grief and this senseless, irrational anger, or how to even wrap my head around what the hell actually happened?!
Anyway, I just needed to get that out of my system. 😢

Angela Wright said:That is their official response. Consequently, I would request that any further criticisms, suggestions, or inquiries be directed toward them rather than us. I was simply fulfilling what I might call an official duty, as I felt that if we possessed certain information, providing it both on our own forum and here would ensure we aren't merely dealing with hearsay but rather someone's official word backed by actual accountability.

I certainly have my own personal opinions on the matter, though I shall refrain from sharing them...

Absolutely! 🙂 I am truly glad you are here!

Amanda Anderson87 said:Even though this is my first time posting here, I’ve been following this group for a year and a half now, and you all have provided such immense comfort during this time. @Angela Wright/">@@Angela Wright, I don't know who you are, but I know you've walked through hell, and I want to thank you as if you were my own flesh and blood for being here for everyone for whom the universe made a catastrophic mistake by taking someone they love... and for those currently fighting their own nemesis.
My fighter lost his battle with Grade 4 Glioblastoma today at the age of 43. He was the man I grew up with, the man I called "my brother" my entire life. What bound us together was something far deeper than mere friendship or even blood relations. We had a happy childhood, followed by a wild youth where we spent our time pulling each other out of trouble with our parents—or getting ourselves into it together. My parents consider him their son, and my husband considers him his brother. And today, he went to be with his father, to a place where he can finally sleep peacefully and where the pain can no longer reach him... where he will walk and run and talk and watch over us.
As for me, I simply don't know how to lift this heavy stone sitting on my chest... I don't know how to stop the tears, how to carry this overwhelming grief and irrational anger, or how to make sense of what on earth actually happened...
I suppose I just needed to get this out... 😢

Please accept my deepest condolences...
I know it isn't easy to process that tidal wave of emotion—the grief, the anger, the disappointment, and eventually, that hollow sense of relief knowing he is no longer suffering... and while time will certainly pass, you will never truly stop asking yourself, "Why so soon?"...
But please, let the thought guide you that you shared irreplaceable moments together; that he existed, and that he will continue to exist as long as you are still here... and when you meet again... the joy will continue...

brisksurfer said:Jane, thanks for posting this letter here.

What’s written above is actually pretty eye-opening... especially since the doctor at the Jordanovac clinic just gave us this blank, pale stare when we brought up oxygen (which my father desperately needed during his terminal stage, yet the hospital refused to keep him!). And when I mentioned we managed to get some ourselves, he didn't even bother asking where we got it—which would have been the logical thing to do if he actually wanted to help other families. Honestly, don't hold your breath expecting much from doctors... 🙂 🙂

They only recently updated the CHIF coverage lists. Now, besides lung cancer and COPD, other indications involving lung metastases can qualify for home oxygen concentrators, provided there's a recommendation from a pulmonologist.

So, I managed to scrape together an oxygen concentrator for my dad (who passed away this past summer), mostly because the hospital sent him home to die and I just couldn't sit there watching him suffocate. After that, I reached out to his pulmonologist to see about draining the fluid from his lungs, and let me tell you—this woman literally started screaming at me. She actually had the nerve to yell about how "irresponsible" I was being for giving him oxygen on my own accord, and how dare I even think about getting a machine for home use? She kept going on about whether I "understood the consequences" and how improper use could be fatal for the patient... Look, the man is literally dying. Every single day he has less and less oxygen, and I’m out here trying to give him air because, of course, the hospital wouldn't do a damn thing to help.
Fucking unbelievable.

Grace Campbell88 said:I managed to scramble and get an oxygen concentrator for my dad (who passed away this summer) because they sent him home from the hospital to die, and I just couldn't sit there watching him suffocate. After that, I reached out to his pulmonologist to see about draining the fluid from his lungs, and the woman literally screamed at me. She actually had the nerve to ask how I could be so "irresponsible" by giving my own father oxygen on my own, or even daring to get a concentrator for home use without permission. She asked if I even understood the consequences—that improper use could be fatal for the patient. Think about that: the man is literally dying right in front of me, gasping for air every single day, and I'm being treated like a criminal for trying to give him oxygen because the hospital refused to provide it.
Fucking unbelievable.

To be perfectly honest, the doctor actually had a point here.
You have to precisely titrate the oxygen levels and moisture, managing the intervals based on the specific lung capacity and overall condition, because if you don't, you end up making the person's breathing much harder instead of easier.
It’s also vital to constantly humidify the nasal passages; pure oxygen can seriously damage tissue and cause an intense burning sensation if the dosage isn't strictly according to protocol.
When she says "fatal," she doesn't necessarily mean immediate death, but rather adding unnecessary agony to a process that leads to death anyway. At the end of the day, we're all mortal, but quality of life is what actually matters.
That said, there is absolutely no excuse for a pulmonologist failing to suggest an oxygen concentrator for palliative home care.
Palliative medicine is a specialized branch of study taught at Medical School, and having a layperson just winging it isn't the most responsible approach, regardless of the circumstances. I am truly sorry you struggled to navigate the system and get your dad exactly what he needed. I just hope you were able to manage the dosage and timing somehow.

Angela Wright said:Actually, the doctor was right about this one.
You have to carefully calibrate the oxygen levels, the water content, the timing... all of it based on his lung capacity and general condition, because if you don't, you end up making things way harder for the patient instead of easier.
Also, keeping the nasal passages moist is huge. Pure oxygen absolutely wrecks your tissue and burns like crazy if the dosage isn't spot on.
"Fatal" doesn't always mean instant death; sometimes it just means adding unnecessary agony before the end comes. We're all mortal eventually, but quality of life is what actually matters.
That said, there’s no excuse for a pulmonologist not suggesting an oxygen concentrator for palliative home care.
Palliative medicine is a specialized field you study at Medical School. Having a layperson try to wing it without proper guidance isn't responsible, regardless of the situation. I'm sorry you couldn't get him the exact setup he needed. I just hope you managed to figure out the right doses and intervals somehow.

Someone gave me a rough rundown of how to use the machine, so I wasn't exactly flying blind. It helped him so much—honestly, I don't know what we would've done without it.
Okay, fine, I admit she had a point—but the thing is, nobody wanted to help me out, and in the end, nobody seemed to care that he actually needed oxygen. If we had followed her advice to the letter, he wouldn't have even gotten the concentrator because the folks over at Jordanovac decided he didn't need it.
And you don't need an MD to realize a man can't function without breathing. Not to mention how much he begged me to get it for him and how terrified he was.
Maybe I wasn't thinking clearly back then—but when someone you love is practically dying right in front of you, you do whatever feels necessary in that moment. I wish we’d had more time, but we did the best we could with what we had.
Anyway, I just meant that the concentrator was a lifesaver. Dad passed away seven days after being discharged from the hospital, but at least he had his oxygen.

Amanda Anderson87 said:Even though this is my first time posting here, I’ve been following this group for a year and a half now, and you all have been such a massive comfort to me. @Angela Wright, I don't know who you are, but I know you've walked through hell, and I want to thank you from the bottom of my heart for being here for everyone who has lost someone they love due to some cosmic mistake, and for those fighting their own Nemesis.
My fighter lost his battle with Grade 4 Glioblastoma today at age 43. He was the man I grew up with—the man I called "my brother" my entire life. What bound us together went far beyond just friendship or blood. We had a happy childhood and a wild youth where we spent our time pulling each other out of trouble with our parents, or getting ourselves into it together. My parents consider him their own son, and my husband considers him his brother. And today, he finally went home to his father, to a place where he can sleep peacefully and where the pain can't reach him anymore. Where he will walk, run, talk, and watch over us.
And me? I don't know how to lift this crushing weight off my chest. I don't know how to stop the tears, how to handle this overwhelming grief and irrational anger, and I just cannot wrap my head around what the hell happened!
Anyway, I just needed to get that out. 😢

Please accept my deepest condolences!
Everything you said still haunts me, but I find myself hoping there's something better waiting for us all on the other side... stay strong, dear. :*

Angela Wright said:They just recently added other indications to the CHIF list—like having lung metastases besides just lung cancer or COPD—so you can get an oxygen concentrator for home use upon a pulmonologist's recommendation.

I don't get it... my dad had lung cancer, and back at the Jordanovac clinic, they looked at me like I was out of my mind when I mentioned getting him a prescription for oxygen?! I can't even remember who advised me to get it, but I certainly didn't just dream that up. It’s been eight months since then, and I still get worked up every single time I recall that conversation with the doctor there!

Grace Campbell88 said:Someone explained roughly how to use the machine, so I wasn't exactly flying blind. It made things so much easier for him; honestly, I don't know what we would have done without it.
Okay, I admit she was right—but the point is, nobody wanted to help me, and in the end, nobody gave a damn that he needed oxygen. IF things had gone her way, he wouldn't have even received that concentrator because the doctors at Jordanovac decided he didn't need it.
You don't need a medical degree to realize a person can't function without it. Not to mention how much he begged me to get it and how terrified he was.
Maybe I wasn't thinking with my clearest head back then—but when someone you love is practically dying right in front of you, you do whatever feels necessary in that moment. I'm sorry we didn't have more time, but we managed as best we could.
Anyway, all I'm saying is that the concentrator helped us immensely. Dad passed away seven days after being discharged from the hospital, but at least he had his own oxygen.

Oh my God, this is exactly what I'm talking about.:😢 I don't even know what to say... now I'm even angrier because we weren't some special exception, but this exact same situation happens constantly!!!

When I think back to that whole agony with the cancer, aside from the disease itself, the sheer inhumanity of the entire healthcare system literally destroyed me. If anyone had told me all this before, I would have been sure I was exaggerating. 👎👎👎

Sophia Ross53, I am so incredibly sorry.😘 I'll be sending you a quick little message shortly.

frozenotter72 said:Listen, Dana Wilson33, I know things are rough right now—really rough—but you’ve got this. Hang in there.
Life is just too precious—every single minute we get to spend with the people we love most feels like a genuine blessing. Every night, I find myself thanking God that my aunt is still here with me, and I find myself praying He’ll grant us just a little more time together.
Look, we all stumble sometimes—that’s just life—so you’ve definitely come to the right place. Honestly, I’m an absolute pro at venting and complaining, and my friends have developed an incredible amount of patience dealing with me over the years. Seriously, shoot me a message; we can sit here and commiserate together.

I just felt like sharing my favorite little saying with you all: "La vita è bella." Life is beautiful.
Hang in there.

Allaur, thanks for your kind words. And look, I really appreciate you offering to listen, but I’m going to have to pass—I don't want to end up hurting anyone with my aimless, sometimes negative headspace. I've already caused enough people grief that way. Still, thank you so much.🙂

Angela Wright said:Why on earth would I go and get myself hurt?

It’s because, despite how much I struggle to find any real sense in this all, I still haven't quite convinced myself that every single life is utterly worthless—and even if I did eventually fall for that kind of nihilism, I certainly wouldn't be out here trying to sell it to anyone else. And then there’s God—someone I don't believe in anymore, yet I still find myself missing Him. I know a little bit about you. By the way, I'm Dunav, though I actually forgot my password for the Dunav account. 🤷 I often find myself forgetting...
I know you lost your mother. And look, I’m well aware there are countless people out there struggling—some of them dealing with far more than I ever have. There are people who are profoundly grateful just to be breathing, people who would give anything to stay here. I see them all the time, even children. That’s why I can't stand my own bouts of ingratitude. It’s also why I could never, ever dare to suggest that anyone else's life is worthless—because I don't believe they are.
And look, I know how incredibly brutal it is—watching someone you love go through hell while you're just standing there, feeling completely powerless to do anything about it. That’s exactly why it was so hard for me to sit down and write something like that.
I honestly have no idea how people like you manage to endure the pain, though I know firsthand just how much it hurts to be in that position. Because of that, I really didn't want to come across as cold or heartless.

At the end of the day, we’re all essentially trapped inside our own skin—navigating this life solo—but that doesn't mean we have to stay isolated. We can find support out there, and honestly, we deserve to have it.

I don't know if anyone actually deserves anything—life isn't exactly fair like that—but I get what you were trying to say. Honestly, thank you so much for everything you've shared. I also wanted to let you know that I think what you’ve done here is truly beautiful and incredibly kind. It's clear to me that your posts have helped a lot of people find a little bit of comfort when they needed it most.

Try logging into the Association's forum—plenty of patients post there. I’m convinced it might give you some extra motivation, and maybe point out a few nuances you haven't noticed yet (it seems to me you're a woman, 🙂).

Thanks, but I can't. I tried talking to people close to me, but it didn't work out for various reasons. That's why I ended up here, though it was honestly hard to make the decision to actually say something here, too. I don't intend to keep writing here, but I'm truly grateful you replied to me.
Maybe I'll change my mind one day.🙂

brisksurfer said:While my dad was sick, I was right there with him, going to every single hospital for tests and scans, and I can understand how just that alone can make a person lose their will to keep going. Of course, I can't even begin to imagine what it feels like to be going through chemo and radiation, so I don't think anyone should be judged if they decide to stop treatment... but there's something else—after an awful surgery and radiation, Dad found out he had to do chemo. I remember it like it was yesterday, how he told us he'd had enough of everything and that he would only continue treatment because of us. I can't even imagine how I would have felt if he had told me then that he was giving up.
He fought until the very last second... after he passed, I was devastated and cried every single day—but what keeps playing over and over in my head is that he REALLY, REALLY wanted to live, that he didn't give up, and that since he had to leave, I shouldn't waste my own life...😢

Anyway, I hope that gives you at least a little motivation to keep going. I wish you so much luck.😘

I am so incredibly sorry that your father suffered and that you had to go through all that pain. I hope that motivation never leaves you.🙂

slyseal28 said:I started posting here because of my husband, and through that, I met Angela Wright and a few others, and we founded the "A New Day" Association for those fighting cancer, their families, and friends. We try to help others who find themselves in our shoes—trying to push for changes, trying to spread the kind of information patients and their families actually need, and things like that... and we just hope that some things will eventually change...

I think you've created something truly beautiful. I hope it never stops.🙂 It's clear you mean a lot to a great number of people.

Thank you all for the comforting words. I wanted to come by during the Christmas season to wish you all happy holidays, but I couldn't remember my password for the site. So instead, I just want to wish you all strength, comfort, and peace... to all of you and your loved ones.
I was feeling pretty lonely and pretty down when I finally bit the bullet and decided to write my first post. Thanks for getting back to me—to all of you who replied, and to everyone else just passing through—and I want to wish you all a happy Easter. I really hope things start looking up for all of you. 🙂

brisksurfer said:I honestly don't get it... my dad had lung cancer, and when I brought up the idea of getting oxygen prescribed, the doctors at the Jordanovac clinic looked at me like I was losing my mind. I can't even remember exactly who gave me the advice to look into it, but I know for a fact it wasn't just some random thought that popped into my head out of nowhere. It’s been eight months since that happened, and I still get worked up every single time I think back to that conversation with the doctor there!

My bad, I mixed up the diagnoses.

Look, I honestly don't get why some pulmonologists are being so stubborn about providing help when it's blindingly obvious that the patient actually needs it.
We’ve seen this pattern quite a few times now. Pulmonologists over at the Jordanovac clinic reach out to the doctors we collaborate with at the Rib hospital, essentially pleading for us to step in. They're looking for help with patients who don't technically meet the clinical criteria for oxygen therapy yet, but they're already in the terminal stages—struggling with lung lesions and literally suffocating—only to be sent home by the staff.
I guess it all comes down to the individual doctor, just like pretty much everything else in life. That’s why it’s always worth getting a second opinion on anything that’s bothering us or feels off.

My husband has been undergoing chemotherapy for about six months now to combat stomach cancer that has unfortunately spread to his liver, and up until recently, he was actually handling the treatments quite well. However, following his most recent session, things took a sudden turn for the worse; he’s been struggling with vomiting and has lost about 22 pounds, which feels like an enormous amount. His red blood cell counts have also plummeted significantly, so we've been trying to support him with beetroot juice, Megostat, various herbal teas, and thankfully, he isn't experiencing much discomfort when he eats—which truly feels like a small miracle given how serious his diagnosis is. He seems quite listless and lacking his usual spirit lately, though I am holding onto such a deep, unwavering hope that he will pull through this. He's only 53 years old, and I can't help but wonder, has anyone else here navigated a similar situation? Does anyone have any advice or insights they might be willing to share? Thank you all so much in advance!

Angela Wright said:My bad, I mixed up the diagnoses.

Look, I don't get why some pulmonologists refuse to help when it's blindingly obvious that a patient needs it.
We've seen this happen way too often. Pulmonologists from the Jordanovac clinic would call the doctor we work with over at Rib just to beg us to step in. They had patients who didn't technically meet the "official" criteria for an oxygen concentrator, even though they had tumors on their lungs, were in the terminal phase, and were literally suffocating—yet they were being sent home to die.
I guess, just like anything else, it comes down to the individual doctor. That's exactly why you have to seek a second opinion on everything that feels wrong or suspicious.

It’s just awful... the absolute worst part of these situations is that you can't even think straight, and you're left completely lost, not knowing what move to make next. And listen, my dad was on oxygen the entire time he was in the hospital, and the doctor actually acted confused when I asked him how we could possibly get more oxygen! (I think you might have even advised me to ask him about it, I can't quite remember now).

Thankfully, the folks from the Hospice Association stepped in immediately, and eventually, the hospital finally told us how to manage the oxygen dosage. The real issue is that the dose has to be adjusted constantly based on blood gas levels, which is obviously something you can't just decide on your own.😢 It breaks my heart just thinking about that struggle, thank God it wasn't for longer...

My dad was on that oxygen dose constantly—and I mean constantly, those last five days right up until he passed. He was hooked to it around the clock; he even slept with it. It made breathing so much easier for him, but when I tried to take it away because I was terrified of what might happen if he struggled, he got so scared. He just kept begging me to leave it on. Even now, I can't shake the sound of that concentrator from my head, especially at night when everything goes quiet...
Honestly, it’s probably a good thing I HAD NO CLUE back then that those dosage levels are supposed to be adjusted constantly. If I had known, I would have spiraled into a total panic. Luckily, I just assumed that was all there was to it, especially since he didn't end up suffocating, so we really caught a break with the oxygen.

As for the staff over at the Jordanovac clinic, I don't even want to get into it. There's nothing left to say; everyone's already said it all.

Honestly, I wouldn't even know if they were adjusting it because my dad was only home for a tiny bit with the oxygen before he ended up back in the hospital anyway. It was there that I realized they were constantly tweaking his dosage. Looking back, it only lasted one afternoon, that night, and then through the next day until we finally called 911, but it felt like an absolute eternity. Just like you, the sound of that machine makes me physically sick. I remember Mom and I taking turns watching him that night because we were terrified he’d pull the mask off—I was deathly afraid he’d suffocate himself. Unlike your dad, mine was always ripping it off because it dried out his entire nasal passage...

Ugh, honestly, it's better not to even think about it...

Angela Wright said:First off, you need to get your head straight regarding the guilt. This disease is hitting him, not you. You are caught in the crossfire of this situation. He’s the one carrying the heavy end of this burden until the very end, and you—along with the rest of the family—have to give him nothing but total, unconditional support. That includes laughing, too, because he needs that more than anything. Don't you dare let him feel guilty just because he's sick and it's causing pain for everyone else. Nobody deserves that, especially not the person who actually caught the illness.

There's no deep philosophy or complex math here. Reality is blunt and simple: people are fragile. People get hit by devastating diseases. Humans are mortal and temporary. Goodbyes are brutal.
BUT: humans possess an incredible reservoir of strength they don't even realize is there. We have built-in mechanisms to adapt to almost any fundamental crisis life throws at us. Things get easier when people start trusting their own raw, natural instincts.
That’s just what I’ve realized. Maybe it helps you.

I was digging through some old posts and stumbled upon this... you wrote that beautifully... and it really helps some of us out. *

brisksurfer said:Honestly, I wouldn't even know if they were changing anything—my dad was only home briefly with the oxygen before he ended up back in the hospital. That’s when I realized they were constantly adjusting his dosage. Looking back, it felt like it lasted an entire afternoon, then through the night, and all the next day until we finally called 911. It felt like an eternity. Just like you, the sound of that machine makes me feel sick to my stomach. I remember Mom and I taking turns watching him that night because we were terrified he’d pull the mask off; I was deathly afraid he’d suffocate. Unlike your dad, mine kept trying to take it off because it completely dried out his nasal passages...

Man, better not to dwell on it...

Yeah, you just reminded me of those nights. The nights were the absolute worst. During the day, you deal with it somehow, but those few nights? I didn't sleep at all. He was coughing so much, I was just terrified he was going to stop breathing.

Thank God it was quick and he didn't suffer too much, unlike some people. I still find myself checking this thread from time to time, mostly because I spent so much time glued to it during those days. I didn't have the energy to type much, I just sat there reading...

How long was your dad sick? Mine passed away about two or three weeks after the diagnosis. And just a month prior, he wasn't showing any symptoms at all.

Nancy Hernandez43 said:Please accept my deepest condolences...
I know it’s impossible to deal with this sudden wave of everything hitting you at once—the grief, the anger, the sheer disappointment, and then finally that weird sense of relief knowing he isn't suffering anymore. Time passes, sure, but you never really stop asking yourself, "Why so soon?"
But let those memories carry you through. Think about those irreplaceable moments you shared, the fact that he existed, and that he lives on as long as you do. And when you meet again... the joy will pick up right where it left off.

brisksurfer said:My heart goes out to you!
Everything you're saying... it still hits me so hard. But I keep hoping there's something better waiting for us on the other side of this world. Hang in there, okay? :*

Thank you. And yeah, these emotional outbursts? They are absolutely brutal. One minute I'm drowning in sadness, angry, or just totally let down, and the next I'm cracking up laughing thinking about all the trouble we used to get into and how much better he made my life. Then there's that relief because he's finally out of pain. My own pain will dull eventually. Time does its thing.

I'm still following along here, reading your posts. Thank you all again. 🙂