Support resources for families dealing with cancer and other serious illnesses

To me, palliative care means one thing: improving the quality of life for people facing terminal illnesses—it’s about meeting them with genuine compassion when medicine can no longer offer a way back to "normal." Honestly, anyone who truly wants to step up can get involved in this field; all it takes is the will to do it.
The Doctor manages the medication dosages, the medical staff handles the actual treatments, but it’s the VOLUNTEERS who spend the most precious time with the PATIENT. Everyone works together—alongside social workers, clergy, and families—trying their best to make those remaining moments as meaningful as possible.

This is a quote from www.palliative.info

What is Palliative Care? (a personal definition)
Its goal is much more Than comfort in dying ; palliative Care is about living , through meticulous attention to control of pain and other symptoms, supporting emotional, spiritual, and cultural needs, and maximizing functional status.
The scope of care and interventions used in a palliative approach is driven by the specific goals of the patient and their family, adhering to established healthcare standards rather than being limited by narrow ideas of what "palliative" should look like.

Kimberly Wright said:this whole thing is driving me absolutely insane.
get this—here is what my primary care doctor actually told me when I asked if there was any way to get my mom admitted to the hospital for inpatient care.
"Do you want the honest truth? Would you really want your mother taking up a hospital bed that could be used for someone who can actually be helped? For example, if you got sick and needed a bed, but it wasn't available because someone like your mom was occupying it?"
😲
this comes from a doctor who literally swore an oath to provide equal healthcare to everyone🙄 🙂
so, does my mom have less of a right to that bed? Is her suffering somehow less important than someone else's? She’s paid into this system just like everyone else, hasn't she? Shouldn't she get help precisely when she needs it most? Why is it considered "okay" to prioritize certain groups while leaving terminal patients hanging? Who honestly gets to play God and decide whose medical care is worth the cost and whose isn't?
it's just disgusting.🤮
I'm telling you, Mom isn't eating anything because the pain is just too much—nothing at all. We are living in the 21st century, yet my mother is facing the possibility of dying from malnutrition.😢

Right now, we're juggling Duragesic patches, Tramadol drops, and once a day, a home health nurse comes by to give her a Tramal injection. That Tramal is the only thing providing even a shred of relief, but I can tell that over the last few days, even that isn't cutting it anymore—and we don't have the option to have a nurse come by twice a day.
what do we do next? 🤷

There actually is a way to get them to come twice a day. You just pay for that second Tramal injection $33 when the nurse makes their second visit of the day. Of course, that has nothing to do with insurance coverage. This answer isn't based on theory; it's based on reality. It's the same old story: if you don't have the cash, you're on your own. It's the unofficial motto of both the American healthcare system and, frankly, the world.

stormynomad20, would you mind walking me through how we could actually manage to get a nurse out here twice a day? 🙂

Anyway, I’ve been picking up the Tramal at the local pharmacy. A single pack containing five 50 mg ampoules, along with the syringes and everything else, runs me about $8.25. So, if you do the math, the daily cost for just the medication itself ends up being roughly $1.75.

Angela Wright said:Thanks, dear—and honestly, I’m hoping for the best too, even though life has decided to throw me one more massive curveball. My baby was born via emergency C-section during week 28 because of my preeclampsia. My organs were starting to fail, so there just wasn't any other choice. He was only about 2 pounds at birth, and since then, he’s battled two nasty infections, stage 2/3 brain damage, and seizures. But he's a fighter—he's already up to nearly 4 pounds after 50 days, and they say he's doing okay for now, which is the main thing. We're praying he gets discharged by Easter, but we know the road through rehab is going to be incredibly long and brutal. We don't even know the full extent of the damage yet. I don't even need to go into detail about what I'm going through—I just think back to everything I dealt with regarding my mother's neurological episodes. I always used to say that after everything I went through with her, nothing could ever break me... unless, God forbid, something happened to my child. And well, it looks like God decided I needed a lesson in that.

I am praying to God that everything turns out okay for you and your little one, and I'm sending so much warmth your way—I truly hope you can leave all this darkness behind soon.
I actually broke down crying reading your recent posts this morning. I mean, seriously, where is the justice in this? Wasn't all that suffering and stress with your sick mother enough for one lifetime?
I wish you nothing but the absolute best. That little guy has definitely inherited your grit and courage, so I know he'll fight his way through this and grow up to be one of those people who actually makes the world a better place.
Sending hugs to you both.

I’ve got a bit of a "legal" question for you all, but honestly, I figured this thread was the best place to dump it. 🤷

Has anyone here actually used their personal days to take care of a seriously ill family member? And more importantly, what kind of "proof" regarding the illness or your relationship to them did your employer demand you cough up?

Kimberly Wright said:stormynomad20, honey, please walk me through how we're supposed to get a nurse to visit twice a day? 🙂

Anyway, I’ve been picking up Tramadol at the pharmacy—one pack comes with five 50mg ampules, plus the needles and syringes, and it runs me about $8.25. So, looking at just the medication itself, we're spending roughly $1.75 per day.

We actually get the Tramadol covered for free through our primary care physician. What we *do* pay for is the visiting nurse—she stops by every day around noon, and since Mom really needs her injection in the evening, we pay her about $3 per shot for those night visits. Unfortunately, paying out-of-pocket like that is an option, though you have to be careful they don't try to overcharge you—it's almost like encouraging under-the-table work! Just kidding, mostly. In all seriousness, though, sleep has been a massive struggle for us lately; even when Mom isn't in intense pain, she just can't sleep because of the sheer anxiety and fear. My husband actually went to see the GP yesterday to grab some sleeping pills (I'm not sure of the exact name, but apparently, they're quite strong), but it didn't help much—she was still waking up every single hour.

Angela Wright said:Thank you, dear. I’m holding onto hope too, even though life has thrown me a massive curveball again. My baby had to be delivered via emergency C-section at 28 weeks because of my preeclampsia. My organs started failing—there was simply no other choice. He was only 950g at birth. Since then, he’s fought through two severe infections, brain damage graded at 2/3, and convulsions. But he refuses to quit. Even after 50 days, he’s up to 1700g and they say he’s doing okay for now, which is the best news we've had. We’re praying he can come home by Easter, but the road to rehabilitation ahead of us is going to be brutal and uphill. As of right now, we don't even know the full extent of the damage. Honestly, I don't even need to explain the hell I'm going through; just thinking about my own mother's neurological outbursts brings it all back. I always used to say that after everything I dealt with regarding my mom, nothing could break me—unless, God forbid, something happened to my child. And here I am. It feels like God decided I needed one more lesson in this.

I am reading this and tears are literally streaming down my face... I was wondering where you went because I noticed you haven't been nearly as active lately.
I am so incredibly sorry. Truly. Life is just plain unfair sometimes. I want nothing but luck for you both; I hope you get out of there as soon as possible... because listen, if anyone can pull through this, it’s definitely you!!! Don't give up!!! Sending you both a huge hug.

redridge13 Asks:
I have one "legal" question—though I suspect this thread is actually the best place to pose it. 🤷

Have any of you actually tapped into your PTO to care for a seriously ill family member? And more importantly—what kind of "proof" did your employer demand regarding the illness or your relationship to them?

Issues like this are supposed to be governed by a collective bargaining agreement—though, frankly, I haven’t heard of a single one that actually lays out those specific terms. Usually, you just get a few days off for things like a death in the family or moving house; some companies might even throw in time for continuing education, but that’s about the extent of it. Beyond that, an employer has to be a signatory to a collective bargaining agreement to begin with—which, unfortunately, describes a huge portion of employers here in America.

ironsailor22 said:Stuff like that is usually handled through a collective bargaining agreement, but honestly, I haven't heard of a single contract out there that actually lays it out. Usually, you just get some time off if someone in the family passes away, or maybe for moving house, or occasionally for going back to school—that’s about it. Plus, the employer has to be a signatory to a collective bargaining agreement for any of that to matter, and unfortunately, a huge chunk of employers here in the States don't bother with that at all.

In our company handbook, on top of time off for having a baby, weddings, or deaths, there are also 3 days allotted to care for a seriously ill family member (it’s also in federal labor law, though the exact number of days depends on the specific company policy or the collective bargaining agreement).
So, why hasn't anyone actually used that? 😕

slyseal28 said:What you wrote actually stung—I think you’re missing just how much these advocacy groups are doing (and not just ours), so I felt compelled to respond.

It’s clear I missed quite a bit, so to correct my own oversight, I sat down to watch the program Open.
I realize CNN is a major network, but it was frankly unprofessional to frame a show like this by pitting you—as the sole representative for patients (with the occasional nod from John Doe)—against four unscrupulous, dishonest, and hypocritical bureaucrats and politicians. They spent the whole time pivoting away from the actual topic, essentially creating a smokescreen to mask their own incompetence and lack of accountability. Meanwhile, the Secretary keeps cutting you off relentlessly, refusing to let you even present an argument. His lack of basic decorum isn't surprising, but what *is* shocking is the host; despite being personally connected to the subject after her own recent cancer battle, she showed zero empathy, denying you the right to a final word. In the end, the episode served its purpose perfectly: it barely mentioned patient rights, instead choosing to lionize the Secretary and the Director—who should probably be applauded for "solving" a crisis they manufactured themselves.
Watching all of this only reinforced my belief in how rotten the system truly is. It proves why we need to unite our forces against this mess—because in this supposed democracy of ours, organized pressure is the only way to get anything done. How one actually achieves that kind of unity, given the temperament of Americans, is anyone's guess. It seems everything here starts and ends with a few brave individuals, while the masses are only moved by football games, rock concerts, or seasonal clearance sales.

Angela Wright, I am so incredibly sorry to hear that. Sending you and the little ones nothing but strength and good vibes—fingers crossed for a really speedy recovery.

redridge13 said:I have a bit of a "legal" question, though I suppose this thread is probably the best place to air it🤷

Has anyone here ever actually used their personal time off to care for a seriously ill family member, and what kind of "proof" regarding the illness or your relationship did you have to present to your employer?

At my old job, those options just didn't exist.
I actually went to my primary care physician to ask if I was entitled to any medical leave to look after my mother, and the answer was a flat no.
Apparently, you can get leave to care for a child or a spouse, but for a parent, you're out of luck.

ironsailor22 said:Everything I’ve witnessed lately only reinforces my belief in how broken the system truly is, and how vital it is that we join forces to fight against this corruption, since pressure and collective strength seem to be the only ways to actually make an impact in this so-called democracy of ours. How one goes about organizing that kind of unity, given the temperament of our people, is something I honestly can't wrap my head around. It seems like everything in this country starts and ends with a few brave individuals, while the masses are only ever stirred by football games, rock and country concerts, or seasonal clearance sales at the mall.

👍

ironsailor22 said:Everything I’ve witnessed just reinforces my belief in how fundamentally broken this entire system is. It makes you realize that if we want to actually combat this kind of institutional rot, we have to unite—because, frankly, in this so-called "democracy" of ours, sheer force of will is often the only thing that moves the needle. But how do we actually achieve that unity? Given the temperament of our people, I honestly don't know. It feels like everything in this country starts and ends with a few brave individuals stepping up, while the masses are only ever stirred into action by a football game, a rock concert, or a big seasonal sale at the mall.

I find myself agreeing with all of that, though I would offer one small correction: it isn't that the advocacy groups aren't doing anything. In fact, the nonprofits and activists are working incredibly hard. I know this firsthand because I collaborate closely with many of them. The real issue lies with the general public, who seem much more interested in sitting at a coffee shop than showing up to support a cause. And don't even get me started on how few patients are willing to speak out publicly. Without that public outcry, the powers that be simply face zero consequences...

As for the host—don't act surprised. She was once a patient herself, but I can almost guarantee she wasn't stuck waiting hours for diagnostic tests like the rest of us... That explains why the segment felt the way it did. We couldn't exactly turn her away, or who knows what kind of fallout we would have faced. At least this way, the true colors of everyone involved were laid bare for all to see.

amberdriver8 said:...so yeah, I just wanted to jump in here because my mom was actually suffering for five whole years from this terrifying stomach cancer called GIST, which ended up spreading to other organs too... I won't drag this out, but honestly, we all went through absolute hell, both mentally and physically, with her being in such horrible pain, and toward the end, her abdomen got so swollen, it was just awful, really... but thank God, and thank Dr. Kocman, who recently operated on her even though they said the chances of survival were super slim. And don't even get me started on how we spent five years searching for a surgeon—we looked everywhere across the globe, truly, and nobody would even touch it, then suddenly this great American doctor comes along and performs the surgery, and I'm still kind of in shock, but in a good way!!! Everything is okay now... he removed everything, I think the tumor and the metastases, although he had to shorten her large intestine and stomach a bit... but hey, if it makes her look "fit" since she'll be eating less, I'll take it, haha! All in all, she's cured, and they say no one is supposed to live more than five years with GIST... so, there's God and there are amazing doctors. Alternative stuff didn't help much, so feel free to ask me for any advice or anything regarding malignant diseases

My dad was given the exact same diagnosis just a few weeks ago... apparently it's an inoperable tumor, mostly because during the first surgery they only did a biopsy thinking it was pancreatic cancer. However, the pathology report showed there were no tumor cells in the pancreas and the actual diagnosis is GIST (low risk). Right now, they've suggested surgery and therapy with Gleevec, though the surgeons probably won't decide on a second operation right away. Could you tell me which doctor operated on your mom and where? You can just send me a private message if that's easier...

Lisa Diaz8 said:My dad just got the exact same diagnosis a few weeks ago... they're saying it's an inoperable tumor because the first surgery was just a biopsy—they thought it was pancreatic cancer at the time. But then the pathology report came back saying there were no tumor cells in the pancreas, and the actual diagnosis is GIST (low risk). Right now, the recommendation is surgery followed by Glivec therapy, though the surgeons probably won't jump into another operation immediately. Can you tell me which doctor operated on your mom and where? You can send me a DM if that's easier...

She already gave you the info. Dr. Kocman. You can find his email and phone number right on his website.

My dad had his stomach removed a year ago due to cancer.
The test results look great now, but he hasn't been able to eat for about ten days. Today is particularly rough—he’s sitting at the table, trying to take a bite, and just breaks down in tears. He dealt with diarrhea and vomiting earlier, but that seems to have subsided.
Does anyone know of any supplements or remedies to help stimulate an appetite? He says the very thought of food repulses him, and he can barely manage two bites.
His doctor prescribed Prosur, but even that isn't helping much.

😢

Kate Davis23 said:My dad had his stomach removed about a year ago because of cancer.
The test results are great now, but he hasn't been able to eat for about ten days. Today is actually the hardest day—he just sits there at the table, tries to take a bite, and starts crying. He was dealing with diarrhea and vomiting before, but that’s finally stopped.
Does anyone know of any supplements to help boost his appetite? He says food just turns his stomach and he can barely swallow two bites.
His doctor prescribed some Ensure, but even that isn't really working right.

😢

I think I mentioned this before, but let me say it again...

My mom also had her stomach removed about a year and a half ago due to gastric cancer.

To get an appetite back, you should ask the oncologist to prescribe Megostat, and then you can head to the primary care physician for the actual prescription.
Products like Ensure or Prosure are meant to supplement nutrition, but they were a bit too heavy for my mom. If your dad is having trouble digesting them, maybe try diluting them slightly with water or tea?

It isn't that he's having trouble digesting food; it's that he can't even bring himself to eat—everything just turns his stomach.
And whatever he does manage to swallow, it either comes right back up or results in diarrhea.
He’ll be begging for food one minute, and then he simply can't keep anything down the next.

Kate Davis23 said:It isn't so much that he’s having trouble digesting food, it's more that he can't bring himself to eat at all—everything just turns his stomach.
And whatever ends up in his mouth, it either comes right back up or results in diarrhea.
He's constantly asking for food, only to find he can't actually manage to eat anything.

I would say, if we are looking strictly at a loss of appetite, maybe try giving him Megostat.

As for the vomiting and the diarrhea, you really ought to consult with an oncologist.
When was the last time your dad had any tests done? How long ago was that? And was there a period recently where he could eat normally without dealing with all this nausea and digestive upset?

All the detailed tests were completed about a month ago, and the results were more than satisfactory. He had some trouble eating breakfast this morning—it took him much longer than usual to finish—but he hasn't vomited or dealt with diarrhea yet.
About 15 days ago, he ate some cream puffs (not sure exactly how many), and three days later, the cramping started. He took a Pepto-Bismol tablet because he couldn't make it to the bathroom in time. After that, the diarrhea hit, followed shortly by vomiting.
The oncologist doesn't believe the cancer has returned, given that all his test results over the last year following the surgery have been excellent.
The vomiting and diarrhea stopped four days ago, but the vomiting came back today. He barely managed a few bites this morning before throwing everything up.

He doesn't look too bad physically, aside from the weight loss, but he is absolutely exhausted and has zero energy—which makes sense, considering he isn't eating anything.