Support resources for families dealing with cancer and other serious illnesses

brightgardener8 said:It’s obvious everyone here is just defending their own side, but if you ever find yourself in the same shoes we’ve all been in—which, fingers crossed, you never do—just know that you’ll never be viewed on the same level as us regular folks by the doctors. To them, you’ll always just be a colleague from the same field, which means you'll naturally have an easier time getting information and finding more doors open. The experience simply isn't the same.

I can't tell you how many times I've seen a waiting room packed to capacity with people all battling cancer, only to have a female colleague walk right in—who happens to be sick herself—and bypass the line to go straight into the doctor's office. For her, there is no such thing as waiting.
And that’s just one example, probably the most obvious one.

That is truly the one thing you can do for a colleague.

My husband is heading in for a rigid bronchoscopy today. They’re doing it under general anesthesia, so we’ll just have to wait and see what the doctors actually find.
Honestly, I’m just praying they give me the straight truth. Not knowing is the absolute worst part—it just makes you lose your mind. My husband has been dropping weight so fast lately, it's scary. I can tell something is seriously wrong, and he knows it too. He feels terrible and he's in pain. So, how am I supposed to just sit here and act like everything is fine?
And look, don't anyone start judging me. I wouldn't be acting like this if I wasn't terrified. I would give anything in this world just to have my husband healthy again and to actually believe that he's okay.

Lisa White54 said:My husband is heading in for a rigid bronchoscopy today. They’re doing it under general anesthesia, so we’ll just have to wait and see what the results show.
On that note, I’m honestly just praying they tell me the truth. Not knowing is the absolute worst part—it makes you feel so lost. My husband has been losing weight so suddenly, and it's obvious to me that something isn't right. He can feel it too; he's just not feeling well and is in pain. How am I supposed to believe everything is fine when I can see the changes right in front of me?
Please, don't judge me. I would be the happiest person in the world if my husband were healthy again and if I could truly believe that he was actually doing okay.

I feel the same way. While you're going through the diagnostic process, try to stay calm and composed. Avoid getting angry or aggressive, because that usually backfires and doesn't get you anywhere. Just focus on asking questions and gathering information. You'll be told everything and explained clearly; regardless of what anyone else might say, nobody is going to leave you out in the cold.

Maria Jones40 said:That’s pretty much the one thing you can actually do for a colleague.

Oh, fantastic! So what you're basically saying is that doctors are some kind of higher species, and their health, their schedule, their nerves—all of it—is somehow more precious than ours regular folks.
👎

Maria Jones40 said:Personally, I’d welcome it. While you're waiting on diagnostics, just stay chill—don't go in there swinging or getting aggressive, because honestly, that just backfires. Just ask questions. Get the facts. They’ll tell you what you need to know, and regardless of all the rumors flying around, nobody's just going to leave you out in the cold.

Look, I'm not sitting here being aggressive or pissed off. Honestly? I just want straight answers. Not some vague, "maybe this, maybe that" nonsense I have to interpret myself. Over these last four years of treatment—dealing with everything from the initial diagnosis to the chemo and radiation—I’ve been carrying the entire weight of my husband's illness on my own shoulders. I've had to juggle a million different issues, just figuring things out as I went, doing what I thought was best. Maybe I messed up somewhere, but luckily, I haven't. When symptoms popped up—and man, they popped up constantly—it wasn't like I had anyone to turn to for advice. It’s always the same thing: "That's just how it is." And what does that even mean? What am I supposed to think about that? There were so many times I felt completely alone in this world, like I had no one left to ask because the answer is always the same. Nobody would have even suggested a CT scan if I hadn't basically begged a doctor at the general hospital to recommend one myself. In four years, he's only had four CT scans total. It's like nobody cares, like whatever happens—or is going to happen—is just "meant to be." I absolutely hate that phrase.
For four years now, my husband has been on Peptoran, Praxiten, and using Durogestik 25 patches. That’s it? Because apparently, "that's just how it goes," and I’m just supposed to deal with it. Of course, it would be a hell of a lot easier if they just gave us the truth about the results they're working on right now. Because no matter what they find, I need to know so I can actually help him. But once again, the whole thing will fall on me, because apparently, that's just how it has to be...

Maria Jones40 said:Eventually, when I actually find a spare moment in my schedule, I intend to lay out a documented list of all the insults that have been hurled my way so far. Once I’ve laid them all out, everything will finally be properly contextualized and argued.

Could you please lay out those insults you keep mentioning? I’m serious. And let me ask you one more time: what is the proper way to handle doctors and the heads of oncology departments who drag their feet when it comes to approving treatments? I actually have a folder of email correspondence I could send over—it’s a collection of exchanges I've had with several critically ill patients who were ultimately denied the care they needed.

My husband happens to be one of those lucky individuals who caught a break with some truly exceptional doctors. However, we’ve both been firsthand witnesses to far too many stories from patients who simply didn't have that same stroke of luck.

Maria Jones40 said:Just a quick observation regarding the Ana Rukavina foundation—it feels like just another rushed project that’s destined to fizzle out here in America. I honestly don't see enough capital being raised to make a dent, nor do I expect those individuals who were supposedly "tested" to step up when actual, concrete help is requested. For them, this was likely nothing more than a momentary surge of passion, a fleeting impulse that won't stand the test of time. Furthermore, this specific model of charitable transparency is becoming increasingly obsolete. By the time a banking system or a structured fund actually becomes fully operational in ten years, the method itself will be outdated. It’s shaping up to be yet another failed initiative. I truly wish I were being pessimistic for no reason, but we'll see how it all unfolds.

What you’re saying is honestly pretty chilling. How can you be so certain that individuals won't respond to treatment? Is that just a gut feeling you're leaning on, or do you actually have hard evidence to back up such a heavy claim? And frankly, where exactly is this type of transplantation being abandoned? If these methods are being phased out, I’d love to see some specifics. Could you point us toward any actual clinics in the States that are still utilizing these newer techniques?

slyseal28 said:Look, could you actually list the insults you're talking about? And I’m asking you again: what's the move when dealing with doctors or oncology department heads who just drag their feet on approving treatments? I could literally forward you my email threads with several seriously ill people who were denied the care they needed.

My husband was one of the lucky ones who hit the jackpot with incredible doctors, but we've both heard way too many stories from patients who didn't get that same luck.

What you're saying is just wild. How do you even know individuals won't step up? Are you just throwing out an opinion here, or do you actually have receipts? And where exactly is this "old way" of doing transplants being abandoned? Can you point us toward any specific clinics actually using these new methods?

Way to go, slyseal28!

Doctors aren't dragging their feet on starting therapies; the bottleneck is mostly Medicare, and honestly, physicians aren't to blame for that. Medicare sets the rules, and if you don't follow them to the letter, you're going to catch heat—first from the head of the Mayo Clinic, and then from colleagues in the "opposing camp." You might even face threats about having to foot the bill yourself. I don't think people truly realize the position practicing doctors are in. It all comes down to who has your back when you're trying to do the right thing. Lately, it feels like Medicare's stance has loosened up just a tiny bit, though it still feels incredibly rigid to me.
Regarding the Anne Frank Foundation, you hit the nail on the head. By the time this becomes fully functional in ten years—assuming it actually happens—those who were potential donors will be ten years older and likely more ill. Plus, there's a huge wave of people who signed up in a moment of enthusiasm without really understanding the commitment; they'll likely back out once fear and uncertainty set in. It’s just like those organ donor cards. People sign them without knowing what they're getting into, only to change their minds almost immediately. For the US, it would be far more efficient to refer rare disease patients—especially children—where transplants are impossible to perform domestically, to specialized centers abroad where experts can handle it with minimal complications. The funds already raised, and those planned for the future, could be better spent improving the standard of care for hematology patients across the states, from county hospitals to major clinical centers. Just look at the conditions in Rebarski hematology; the facilities there are absolutely abysmal for patients in that situation. That is where the money needs to go—so that patients feel treated like human beings rather than outcasts.

Maria Jones40 said:It’s not that doctors are dragging their feet on administering therapy; for the most part, it’s Medicare that’s the bottleneck, and honestly, the physicians aren't to blame for that. Medicare writes the rules, and if you don't follow them to the letter, you’re going to get hit first by the head of the Mayo Clinic, then by colleagues from the "opposing camp." They’ll even threaten that you’ll end up footing the bill yourself. People just don't realize the precarious position these practicing doctors are actually in. It’s all about "who has your back" if you want any semblance of leniency. Lately, though, it feels like Medicare's stance has softened slightly—or maybe it's just my perception—but they remain incredibly rigid.

I’m going to be a little blunt here, so please excuse me in advance. My Pigeon would put it this way: "It isn't just a mess; the dog took a massive dump right in the middle of the room!"

For a treatment to even be approved by Medicare, a doctor has to officially prescribe it. Of course, because of the very reasons you mentioned, some physicians simply don't dare prescribe expensive medications, even though doing so flies in the face of the Hippocratic Oath they swore to uphold.

So why on earth don't these doctors take a stand? Why don't they raise their voices and say, "We can't go on like this"? Patients are being denied life-saving therapy because of budget shortages, flawed legislation, and various other systemic failures. Why don't they stand up? Why are they staying silent like cowards?

There isn't a single patient out there who wouldn't stand up for their doctors. Our society is unfortunately saturated with cowards and sycophants who feel entitled to dictate the fates of others, which is why we find ourselves in this position—because the rest of us have remained nothing more than obedient sheep. Forgive me once again; I truly don't mean to offend anyone. It’s just that I am utterly fed up with this silence, both from the medical community and from the patients themselves.

Maria Jones40 said:Regarding the Anne Frank Foundation, you’re absolutely right. By the time it actually becomes fully functional in ten years—assuming that even happens—those who were potential donors will be a decade older and much sicker. On top of that, a huge number of people who enthusiastically signed up as potential donors will likely back out due to fear and uncertainty. It’s just like the situation with organ donor cards. People sign them without really grasping the implications, only to change their minds almost immediately. For America, it would be far more cost-effective to refer rare disease patients—those for whom transplants are impossible within our local clinics—to specialized centers abroad where it can be done with minimal complications and maximum expertise. The funds already collected, and those planned for collection, could instead be invested into improving the standards of care for hematology patients across our regional hospitals. Just look at the conditions in Rebarski's hematology department; the facilities there are catastrophic for such patients. That is where the money needs to go—so that people feel treated like human beings rather than paupers.

I disagree with you. I believe in the strength of foundations and in the people who have pledged to help the sick. It seems to me you are overlooking the power of civil society, which has actually begun to develop quite a bit recently. Civil society will play a pivotal role in matters like this. This is something our country has historically lacked. The Anne Frank Foundation is one of the few civil institutions that has accomplished so much in such a short window, which is why I think it’s unfair to slap the "failed project" label on them. That is simply my view.

I honestly believe our collective responsibility is to teach our children that projects like this deserve our full support—that’s where our real strength lies.

Why don't doctors stage a revolt? It really comes down to a few simple things. First off, at the end of the day, they’re just people who go home and feed their kids just like everyone else. They also have a very real fear of the system they work within, especially when they face constant public criticism. Contrary to what you might think, they often find themselves lacking the support and empathy from patients that they actually need. On top of that, they are under immense pressure from the public eye, and because much of our healthcare infrastructure is driven by political interests, it leads to burnout. Eventually, many just become apathetic, simply waiting to get home where things feel normal again.

Angela Wright said:Could you please be specific about who exactly is spreading untruths and where they are doing it? I’d love for you to quote them and explain. After all, everyone contributing here is just sharing their own personal experiences.
Unfortunately, this entire forum was created because people are being denied access to information they have a fundamental right to receive every single day. We aren't just talking about status updates; we are talking about treatment protocols and everything surrounding medical care.
What you might call "debating medical knowledge," I prefer to call wading through a mess of misinformation—all because we couldn't find anyone to help us clarify the things that are (or aren't) happening to us.
Everything that has been set in motion by individuals—myself included (I'm referring to our association and the specific initiatives we are undertaking)—is the kind of thing that should be organized at a state and professional level in any normal, healthy society. It shouldn't be the case that one girl, Anne Frank, has to organize a stem cell bank from a deathbed instead of some highly compensated official doing that job properly.
So, please don't try to sugarcoat things when the reality is as hard as rock. There are plenty of problems, actually; in fact, the whole system is a complete shambles. For instance, they are now quietly shutting down laboratories in local community clinics...
Yes, it really does take a certain amount of psychological fortitude to deal with the outbursts of certain strange individuals—people who seem more suited for psychiatry—who feel daily compelled to dictate our fates.

OH, YOU EXPERT👍

Maria Jones40 said:Why don't doctors revolt? It’s pretty simple, really. They have kids to feed just like everyone else. They’re terrified of the very system they work within. They get blamed for everything, they aren't getting any actual support from patients—which is the exact opposite of what you're claiming—they're under massive public scrutiny, and in our system, everything is run by political cronyism. They end up becoming completely apathetic; they just wait until they can get home and act like normal human beings.

With this post, you've basically shut your own mouth.😳
If you aren't going to actually do anything concrete, then stop whining and complaining. We all have children, and it’s precisely because of those kids that you need to step up publicly and fight for them and for yourselves. Anything else is just noise, especially when you're typing away on a forum for sick people, essentially shitting on us by implying we're the ones who are "unfit"... give me a break.🙄 ☕
If you've decided to just swim in and ferment in all this crap, fine, go ahead—but don't try to frame your way of life as some golden rule or demand that we follow it as the only fair and right path.👎

Maria Jones40 said:Why don't doctors stage a rebellion? Honestly, there are so many simple reasons for that, isn't there? For one thing, they go home and feed their kids just like everyone else does. They also deal with the fear of working within a system that feels stacked against them, especially when they face constant criticism without receiving any actual support from patients—which is quite the opposite of what you're suggesting. On top of that, they are under immense pressure from the public eye, and let's be real, so much of how things function in our healthcare system is dictated by political interests. It’s no wonder they eventually become apathetic; they're basically just counting down the minutes until they can get home and finally feel like normal human beings again.

Sorry Les, I truly have nothing against you, 😉 but everything you've pointed out applies to all of us employees across various other industries too. In fact, it applies to absolutely everyone, and for some people, it's even more intense because they endure all of this for a significantly smaller paycheck.

Maria Jones40 said:Why don't doctors stage a revolt? It's pretty simple, really. They go home and feed their kids just like everyone else, they're terrified of the system they work in, they get blamed for everything, they don't actually get the patient support you're claiming, they're under massive public scrutiny, our whole healthcare setup is run by political cronies, so they just burn out and wait until they can get home and act like actual human beings.

This has nothing to do with intelligence.
If they’re just going to turn their backs on problems and cower when things get real, why on earth did they pick a career that requires more sacrifice than almost any other job?
Why say YES to helping people if they're too scared of the very system they serve?
None of this adds up to me.

Sometimes I honestly think these doctors just love strutting through the halls in their white coats, feeding their egos while regular folks scramble around them carrying gift bags. With a few exceptions—and let's be real, they're rare—I am absolutely disgusted by the American healthcare system!

My mom is currently stuck in a hospital bed at Mercury, and she's got a bedside potty from the freaking Stone Age that she has to use right in front of every single patient and visitor in the room. She's 55, and it just hit me yesterday—she was celebrating New Year's Day at the Sheraton in a gorgeous black sequined dress, never dreaming about what 2008 would bring. And now look at her, sick and left in the hands of American healthcare, looking more miserable than anyone should ever have to.
I wouldn't wish this on my worst enemy.

Susan Morales66 said:Sometimes I can't help but feel like some doctors just love the idea of strolling through those hospital hallways in their white coats, feeling their egos swell while regular folks scramble around them, carrying gift bags and trying to stay in their good graces...

That might hold true for a few exceptional cases, of course, but isn't it really just a self-perpetuating cycle? We've all contributed to that dynamic by constantly showing up with those little tokens of appreciation. Personally, I'm a firm believer in doing things the right way, and I've never once tried to grease any doctor's palms—even though that stubbornness has definitely backfired on me more than once... but then again, not everyone plays by the rules. Some people just hand over the gift, and suddenly, their medical issues are resolved in a very quick and, shall we say, painless manner. As for those of us clinging to our principles, I suppose we'll just be waiting our turn in line... hoping for better days ahead.☕

rustyscout31 said:It looks fine on paper (with a few exceptions, obviously), but you’re just feeding the cycle because we all helped make it this way by constantly carrying around those damn bags. I’m principled to a fault and I’ve never once tried to bribe a single doctor—which has definitely come back to bite me a hundred times over—but let's be real, not everyone plays by the rules... some people just hand them over and the problem gets solved in a very quick and painless, hmm, way. Meanwhile, us "principled" types are just stuck waiting in line... hoping for better days.☕

And you see patients in their rooms constantly asking each other for advice, like, "How much did you give the doctor? Did you do it? How much? Maybe I should try that too..."
sad

Susan Morales66 said:It’s actually quite common to see patients in their rooms turning to one another for advice, asking things like, "How much did you end up paying the doctor? Did you pay them directly? How much was it? I need to know so I can prepare myself too..."
It's such a shame.

It really is heartbreaking. Honestly, I have no idea who gave these poor people the wrong impression or where they got the idea that everyone is out here demanding under-the-table payments. It seems to stem from a lot of rumors and hearsay rather than actual facts in most cases. You really shouldn't judge the entire healthcare system based on the actions of a few individuals.

I’m reading this, looking at it all, and I honestly can’t believe my eyes.🙄

I am over in this section of the forum—the one where patients and their families or friends connect. It’s the place where I finally came to terms with certain things and decided to step in once the "race against cancer" was already well behind me (specifically, regarding my mother). I’m here in a thread where, from today’s perspective and facing new challenges, I’m trying to offer advice, support, or even just ask for it myself if I can.

In a space where everyone helps one another by sharing information, products, medications, vitamins, teas, personal experiences, phone numbers, and names.
And then someone just wanders into a place like this, bursts in, and starts accusing everyone of spreading lies or badmouthing doctors and the healthcare system...🙄

Where does this idea come from—that everything has to be about money?
When you spend years drifting through hospitals, waiting rooms, and various wards, you see a lot; you hear a lot. I’ve watched people around me try to get ahead using those exact methods even ten years ago. Bundles of cash, expensive bottles of liquor, sudden influxes of money, fine art, or extravagant bouquets.
Those very same doctors who, just a few years back, were striking at a major metropolitan hospital over hours and pay—the ones I actually stood up for, because I truly believed they deserved better opportunities—were, shortly after, being escorted out of operating rooms, crossing themselves and shouting, causing a dramatic scene that triggered a heart attack in a beloved member of my family. These same doctors and nurses refused to give my mom her medication; older women weren't receiving chemo back then; we were brushed off at the ER, and nurses would tell us we were making things up.

So, am I badmouthing them now? Am I attacking the system? Or am I simply stating things as they are, sharing the bad experiences my mother and I went through?

And no, I’m not uneducated, nor is anyone in my family. And yes, we asked questions. We requested official decisions, but the doctors took offense when we mentioned seeking a second opinion—they basically told us that if we were going to act like that, we might as well stay in New York City instead of rushing there. We asked, "How serious is this? What is needed? What happens next?" There were no answers.

And do you know how patients figured things out? They knew by the room number they were assigned to. By that cursed room number, you could tell if the end was near or not—whether there was still hope left or if the light had finally gone out. Because, as it turns out, we were constantly waiting for test results to come back.

What you wrote is incredibly sad. Truly.

Maria Jones40 said:It’s honestly pathetic. I just don't know who fed these poor souls the idea that everyone is out to get them, based on nothing but urban legends and hearsay that lacks any real foundation most of the time. You can't judge an entire system based on a few bad actors.

Go ahead, keep praising your flawless doctors and the perfect healthcare system. Keep hoping—really, put all your heart into it—that you won't end up on this side of the fence, where we're currently talking to you.
And if you do find yourself here? You'll be clawing at the walls trying to make something happen, just like the rest of us.

Maria Jones40 said:It’s honestly pathetic. I just don't know who's been feeding these poor souls these fairy tales—this idea that everyone is out to grab a handout—based on nothing more than rumors and hearsay without any actual substance. You can't judge an entire system based on a few outliers.

You keep obsessing over these "phantom" individuals. For crying out loud, just name one person! Give me a reason, explain the logic, and tell me exactly who among us is lying and where, but please, bring some actual arguments to the table. You constantly defend the status quo blindly and refuse to accept that we aren't just isolated cases; we are a massive collective dealing with identical struggles. Look at the facts: we all ended up on this same forum, all typing the exact same grievances. In your world, there must be some grand conspiracy designed specifically to make us look like we're attacking the system...😍👍
Honey, you're becoming downright ridiculous with these baseless insinuations about how pure and innocent the system is on one hand, while simultaneously admitting it's broken on the other—yet you stay silent because you have a kid to feed...
That's a bizarre analogy, and frankly, it makes me seriously question your supposed expertise. It's baffling to me how someone claiming to be an intellectual can be so blinded by their own bias while being so blatantly self-contradictory.😕