Resources and support for families dealing with cancer and serious illness

ruggednomad182 said:D

Do families dealing with serious illnesses actually suffer? Do they need support systems like counseling or something similar? Can those issues be addressed by starting a non-profit organization for patients where families can also find answers? I’ve felt these shifts firsthand within my own home. My kids lost focus at school. My wife was completely overwhelmed trying to balance family duties with looking after me. They just don't know how to act toward me because this isn't a normal way of life—it's not like things are running smoothly. Then there's the constant anxiety over money. I'm totally out of commission. I'm just not productive anymore. That's just the tip of the iceberg.

Sorry, but I couldn't quite see how your post connects to the quota topic, even though what you wrote is perfectly clear and we definitely share some of the same struggles.

Angela Wright said:To be clear, I mean that someone's faith might justify an action like that. I've dealt with this personally, having had to make a choice on my mother's behalf. I really won't be discussing it here, though. It's too private.
This will be my final word on the matter.

Forgive me, but you missed the point of my question.
I wasn't asking about religion. I was asking about your perspective—whether you believe healing comes from within ourselves. That’s what I’m curious about, if you care to answer.

velvetgull9 said:Look, people, the topic here is supporting families, not healing. If you want to talk about that, start a new thread or head over to On the Edge.

Thanks.

putting a scale in front of the fridge

I feel like faith is such a deeply personal thing, you know? It’s all about how an individual experiences it, so I don't really want to get dragged into any big debates or arguments about it, but I can certainly share my own perspective.
I honestly believe that God loves every single one of us equally, and I don't think He wants us to suffer or expects us to go through pain at all. To me, suffering feels more like a personal choice we make—just like how we choose our own happiness, or sadness, or anger, or even joy... I guess you could say we are all the architects of our own destinies through our thoughts, picking out the kind of life we want to lead and deciding how to react whenever life throws something at us.
When it comes to being sick, I sort of feel like people choose illness based on what they're trying to achieve with it, and then they also decide whether they want to heal or just stay unwell. In my view, sickness might actually be one of the best things we can choose, mostly because it gives us this chance to rise up spiritually and learn so much about ourselves. I think the greatest gift you can get from it is realizing that love is what drives everything, and that the whole point of living isn't just to eventually reach God, but to realize that God has been inside us all along, as long as we live through LOVE. Through love, we become one with everything around us; there's no room for hate, or fighting, or arguing, because if you truly love someone, you don't feel the need to push them away. But, I suppose, before we can love anyone else, we have to LEARN TO LOVE OURSELVES FIRST. That's where the secret to healing lies, because once you truly love, you're free and happy, and there's just nothing left for sickness to latch onto.

steelbadger83 said:Faith is a deeply personal thing—how you experience it is entirely up to you, so I’m not looking to start an argument here, but I can share my own perspective.
I believe God loves us all equally and doesn't want us to suffer. Suffering is actually a matter of personal choice, just like happiness, misfortune, sadness, anger, or joy... We are the architects of our own destiny through our thoughts; we choose the kind of life we lead and how we react to whatever life throws at us.
As for illness, I think people choose it based on what they are trying to achieve, and then they decide whether to heal or stay sick. To me, sickness can be one of the best things we can choose because it provides a unique opportunity for spiritual growth and self-discovery. The greatest gift it offers is the realization that love is the driving force behind everything. The goal of life isn't actually to reach God, but to realize that God is within us at all times, provided we live through LOVE. Through love, we become one with everything around us; there is no room for hatred, conflict, or arguments because if you truly love someone, you have no desire to be separate from them. But, to love others, we MUST FIRST LOVE OURSELVES. That is the secret to healing—when you love, you are free and happy, and illness simply finds nothing to latch onto.

Even though I'm not the one who is sick—it's my mother—I've reached the exact same conclusion as you. My only hesitation in talking about it is that most people don't see it this way, or they feel like I don't have the right to speak on the matter since I'm not the one battling cancer.

Honestly, I think my mom got sick instead of me, because I'm the only one in the family who went through that process of enlightenment and heightened awareness. If I had kept living with the same state of consciousness I had before her diagnosis, I probably would have ended up seriously ill myself, whether physically or mentally.
Also, people often view healing as purely physical. My mom refused to accept her illness until she made a trip to Lourdes (it doesn't really matter that it was Lourdes specifically; what matters is that she had to go somewhere, to travel, to seek answers and find God—she chose Lourdes). There, she experienced healing in the sense that she finally began to accept the circumstances of her life and adapt to them. Before that, she lived in a constant state of tension, stubbornly rejecting anything in her life that she didn't like, which was incredibly damaging to herself. She didn't realize that there really is no other way out than acceptance, and that everything eventually circles back to that one point.

I don't think you can explain this to people. You can only let them know. Each person has to reach this realization on their own, according to God's will.
Acceptance is the first step toward healing, perhaps even complete healing. Acceptance brings immense relief and peace to both the mind and the soul.

I've learned to accept things too, even if it's incredibly hard for me sometimes.

My mom was just diagnosed with a glioblastoma—a type of brain tumor. I’m trying to wrap my head around what the best next steps are and which treatments actually make a difference. I’ve read that Temodal is a standard option, but I also came across some research regarding a drug developed here in the States called DCA, and I was wondering if anyone here knows much about it? Any insight would be huge. Thanks.

Hi everyone.

Just wanted to weigh in. Six years ago, our family dealt with my dad’s Non-Hodgkin lymphoma—thankfully, he’s in remission now, and we aren't seeing any signs of a relapse. Let's hope it stays that way. When the diagnosis first hit, it was pure shock for all of us, especially him; nobody could wrap their heads around it or accept the reality. What we went through as a family was harrowing—navigating the brutal side effects of chemo, the mental toll, hair loss, transplants, isolation, and the endless cycle of tests. It was incredibly hard on me personally—I've always been close to him, and at first, I just couldn't believe this was actually happening. Honestly, the worst days of my life were those periods of waiting after his transplant—walking into the hospital with that pit in your stomach, terrified of what the doctors might say. The uncertainty was paralyzing; while he was losing weight, I was losing mine too. But my dad is a fighter—a true hero—who always tried to steady us, saying things like, "It's better it happened to me than to you; I've lived my life." Sometimes he even seemed stronger than the rest of us, which helped both him and the family—well, it helped us because he stayed positive, and it helped him because seeing us smile gave him the drive to keep fighting. I did everything in my power to be there for him, though I often felt completely helpless.
To anyone out there currently battling an illness or supporting a loved one: keep fighting. Be brave. Give your people everything you have, even when the outcome isn't what you prayed for. For me, having friends who—even if they can't fully grasp the situation—showed genuine empathy made all the difference. They provided that much-needed outlet, allowing us to momentarily forget about the disease and just breathe.

Joshua Flores48 said:My mom was just diagnosed with a brain tumor—specifically glioblastoma. Can anyone tell me what the best course of action is or which medication we should look into? I've read that Temodal is effective, but I also came across this drug developed here in the States called DCA, so I'm wondering if anyone knows more about that one. Thanks.

Joshua, my mom is fighting this too, so I actually started both this forum and another one focused on a new experimental drug—a morphogenetic protein.
Check out this forum: . If you have questions or want to dig into the clinical studies, shoot me a PM with your email address and I'll send them over. Honestly, if there's any other way I can help with advice or just a second opinion, don't hesitate to reach out.
As far as treatment goes, the standard protocol right now—which is pretty much the same everywhere in the US—is surgery first (if they can get it all), followed by a combination of radiation and Temodal for 30 days, then six cycles of five-day Temodal stretches. Temodal can extend life by anywhere from 6 to 36 months. If it comes back after therapy, they usually go in with a Gamma Knife (provided it's an option). I'm just hoping Temodal buys newly diagnosed patients enough time to see the clinical application of this morphogenetic protein, which should theoretically provide a massive boost to both lifespan and quality of life.

Can anyone tell me which medication is typically used here, and how long it usually takes for brain swelling to go down before they can actually move forward with surgery?

Joshua Flores48 said:Can someone tell me which medication is used and how long it typically takes for brain swelling to go down so they can finally perform the surgery?

I sent you an answer regarding this and your other questions via email.

I’m honestly at my wit's end right now. I’ve been looking after my grandfather on my own, and ever since his second round of chemo, he’s been running a fever and seems completely wiped out. He just doesn't have any appetite and can't seem to get a wink of sleep; no matter what kind of meal I try to prepare for him, he barely manages a single bite. To make matters even worse, he's developed a urinary tract infection on top of everything else, which is clearly adding to his discomfort.

His doctor mentioned that the fever is a typical response to the chemotherapy treatment itself. Beyond that, his blood pressure has dropped significantly to 90/55, which is quite a shift considering he has dealt with high blood pressure for years and has been on medication for it for a long time. He had to stop taking those regular prescriptions for now because, frankly, they don't make sense given how low his pressure is currently. Is there anything at all I can do to help him regain even a tiny bit of strength? The doctor suggested I give him some aspirin...😢

Carol Ramirez said:I’m at my wits' end. I’m looking after my grandfather alone, and he’s developed a fever following his second round of chemo. He’s completely wiped out—can’t eat, can’t sleep. Anything I try to make, he barely even tastes it. To make matters worse, he’s dealing with a urinary tract infection now, which is just adding more misery to the mix.

The doctor told me the fever is just a standard reaction to the chemotherapy. On top of that, his blood pressure is bottoming out at 90/55, even though he’s dealt with high blood pressure for years and usually takes prescribed meds for it. He had to stop taking them because, frankly, there's no point right now. Is there anything I can actually do to give him even a tiny bit of strength? The doctor suggested giving him aspirin...😢

He needs something to break that fever and bolster his immune system. For the fever, I’d suggest something gentle like Medicine that won't wreck his stomach since it's likely super sensitive right now; using something like Pain or aspirin could potentially trigger bleeding. My mom went through her chemo without any side effects other than losing her hair, but she did vomit three times. We gave her heavy doses of Native Propolis (www.hedera.com). I happened to get their link via email and checked out their site, where they have testimonials from people who faced horrific chemo side effects that vanished once they started using Native Propolis. My mom took about 15 capsules a day during her treatment along with about 3 ounces of Noni juice (split into three servings throughout the day). Her blood work stayed perfectly within the normal range the entire time.
Whether it’s Native Propolis, Noni, or some other antioxidant doesn't really matter; what matters is getting something into him to boost his immunity and keep him steady so they don't have to halt the treatment. These things work best when taken consistently.
To help with his appetite, you might try giving him Pikovit syrup or those chewable tablets. They're basically vitamins we give kids when they won't eat, but we're actually giving them to my elderly aunt right now (she doesn't have cancer, but she refuses to eat and is losing weight fast), and it opens up her appetite and seems to lift her spirits.
Avoid heavy, greasy foods. Stick to light chicken broths or broccoli soup, which is also fantastic for fighting cancer.
Regarding his blood pressure, make sure he stays hydrated with plenty of fluids—specifically green tea. Have him sip on it constantly. He should probably stay away from coffee at least while he's undergoing chemo.

Thank you so much for getting back to me with all those helpful tips! 😘

I’ve been making him some fennel tea to help settle his stomach and encourage his appetite, and I already have chicken simmering in the pot with plenty of vegetables.
To support his immune system, he’s taking cod liver oil along with this concoction made of aloe, chicory, wine, propolis, and who knows what else...
I’m currently reading through that page you shared, which looks incredibly promising, though I’m a bit lost on how to actually get my hands on it. Where can I find it, and what does it cost? I have a friend living in Washington, D.C., who might be able to pick it up at a local pharmacy if it's available there. Also, do they handle online orders, or is that not an option?
So far, Grandpa hasn't dealt with any major side effects, aside from noticing his hair thinning out a little. He hasn't had any vomiting at all. He has always been such a remarkably strong man, physically resilient, so it truly breaks my heart to see him looking this broken. He barely even has the strength to hold a conversation.

Carol Ramirez said:Thank you so much for the response and all the advice!! 😘

I've been making him fennel tea; it’s great for his stomach and helps his appetite, and I already have chicken simmering in a pot with vegetables.
For immunity, he's taking cod liver oil along with some kind of concoction made of aloe, chicory, wine, propolis, and who knows what else...
I'm reading through this page you left me—it looks incredibly promising, but I have no clue how to actually get my hands on it. Where can I buy it and what's the price tag? I have a friend in Washington, D.C. who could bring it to me if it's available at a local pharmacy. Also, does online ordering work?
So far, Grandpa hasn't had any side effects, other than noticing his hair thinning out a bit. He hasn't vomited once. He's always been an incredibly tough guy, physically powerful, and it absolutely breaks my heart to see him looking this broken. He barely even has the energy to speak.

You can order the propolis by mail. A bottle costs $37 plus shipping via COD, whereas it'll be slightly more expensive at a pharmacy (around $6.75). Honestly, the best move might be to have your friend order it to her address and then ship it to you in Canada. She should give them a call (they're open until 4 PM) at +385 (0)21 325-410 to place the order. I hope you're financially prepared, because he’s going to need those high doses. You should ask the woman at Heder which dose would be most appropriate given the circumstances. Since propolis is a natural supplement, there's no such thing as an overdose. It definitely won't hurt him. Because of the patent Dr. Radić secured for extracting propolis from the honeycomb, this specific form is the most potent version available.
It's a good sign that your grandfather is strong; he'll handle all of this better for it. I know it looks horrific right now, but this is the only path toward recovery. He will get better—he just needs to push through this phase.

You actually guessed right; I'm currently over in Canada. 😁
It shouldn't be much of an issue, though, since I can coordinate everything through a close friend who visits me quite often.
Thanks again for all the information; I’ll definitely reach out to them, as there's really no harm in trying. 👍

I was browsing their website earlier and reading about the people they've assisted, and the very first case mentioned was a man suffering from lung cancer, which is exactly what my grandfather is dealing with. I truly wish he could catch his breath a bit more easily, because right now his left lung is almost completely obstructed, leaving him to rely entirely on his right side just to breathe.

Hey there, everyone. 👋

I’m looking to get some perspective from people who actually have experience dealing with critically ill patients.
So, a suggestion was floated recently—there are a few of us here facing similar struggles at home, some of us know each other through mutual friends or just casual run-ins, while others are more distant, but the idea was to see if we could connect and organize ourselves to some degree to help one another out. The vision, as far as I can tell, is that if someone hits a wall, gets sick themselves, or just needs a break—maybe they need to travel for work or just disappear for two days to finally catch up on sleep because, let’s face it, that becomes a desperate necessity sometimes—the rest of the "group" would step in. We're talking about jumping in to handle rides to the doctor, picking up prescriptions, hospital visits, grocery runs, cooking, laundry, managing medications, or whatever else pops up.
Even though it sounds like a pretty decent idea on the surface, the reaction has been an absolute disaster.
Everyone is 😱 against it. And honestly, I am too.
Look, obviously everyone has their own unique set of needs, but at the end of the day, there are plenty of things where we could genuinely make life easier for one another.
What are your thoughts on something like this—just speaking generally, without getting bogged down in the weeds, but you know what I mean—critically ill patients are all essentially in the same boat when it comes to certain necessities. And their families are right there in the thick of it with them.

Melissa Kim45 said:Hey, everyone. 👋

I’m looking to get some perspective from people who actually have experience dealing with critically ill patients.
A suggestion was put on the table recently. There are a few of us dealing with similar situations at home—we know each other through mutual acquaintances or just by seeing one another around. Some are closer than others, but the idea is to connect and organize ourselves (as much as possible) so we can support one another. The concept, as I understand it, is that if someone can't make it, or gets sick themselves, or just can't manage, or simply needs a break (like when you have to travel for work or just need to head somewhere for two days just to catch up on sleep because God knows we all need it), the others in this "group" would step in. We'd handle transportation to doctors, picking up medications, visiting them at home or in the hospital, grocery runs, cooking, cleaning, administering meds—whatever is needed.
Even though it sounds like a solid idea on the surface, the reaction was a total disaster.
Everyone is 😱 against it. And honestly, so am I.
Of course, everyone has their own specific needs, but at its core—there are plenty of things we could do to lighten each other's loads.
What do you all think about something like this? Just speaking in general terms, without getting bogged down in details, but you know what I mean—critically ill patients face pretty much the same struggles. And their families do too.

To me, it sounds great, but I have my doubts🤔 about whether my mom would ever feel comfortable having anyone else—especially a stranger—change her diapers besides me, my dad, or a professional nurse. Plus, we have our own little system that works for us, which might be totally unappealing to someone else. For instance, I have to head to San Francisco for two days (my best friend is getting married), and the thought of leaving my old man alone makes me sick to my stomach. 😢 It takes two people just to help my mother sit up on a commode; one of them has to be strong (a man) because she’s basically a dead weight—zero balance, completely atrophied, yet still 160 lbs thanks to those damn steroids. And as for needing rest, believe me, I need it more than anything. 🙂 Between lifting her at 5:30 AM, getting her onto the commode, administering glycerin suppositories, waiting for her to go, and then getting her back into bed on a waterproof pad and cleaning her up... it’s a lot. You have to do everything solo—lifting arms, lifting legs, turning her on her side—because you can't exactly put a clean diaper on a body that's already soaked with urine. We have to get all of this done while my dad is still home before he leaves for work, because once he's gone, there's nobody to help me lift her. Our home health aide doesn't arrive until around 8:30, so she really just handles washing her up, brushing teeth, and maybe changing a diaper if Mom hasn't had an accident already. We tried lifting her ourselves once, and she just slipped right onto the floor. Luckily, my boyfriend was nearby and came to help; the two of us simply couldn't do it. That is my single biggest struggle; everything else regarding her care is manageable.
For those temporary gaps of an hour or two, I've managed to find help through volunteers from a local hospice organization. So, if I have to run an errand in town, I call a volunteer, but that’s a rare occurrence. For now, my dad and I just coordinate and make it work.

🙂

I honestly don't even know how to put this into words, other than to say: you are a total hero, girl!!!

Angela Wright said:Honestly, that sounds wonderful, though I have my doubts🤔 about whether my mom would actually feel comfortable having anyone else—especially a stranger—changing her diapers besides me, my dad, or the home health aide. Besides, we’ve developed our own little system that works for us, even if it wouldn't suit someone else. For instance, I have to head out to San Francisco for a couple of days (my best friend is getting married), and the thought of leaving my dad alone just makes me sick😢 . It takes two people just to get my mother up and seated on her commode; one of them has to be strong, specifically a man, because she’s basically like a heavy sack with zero balance—completely atrophied and weighing 73 kg thanks to those damn dexamethasone shots. And I need a break, I really do🙂 . The routine is killing me: lifting her at 5:30 AM, maneuvering her onto the commode, administering the glycerin suppository into her thick colon, then waiting for the bowel movement, and finally getting her back into bed onto the waterproof pad and cleaning her up. You have to do it all solo—lifting an arm, a leg, turning her on her side—because you can't exactly put a clean diaper on a body that's still wet from urine. We have to rush through all of this before Dad leaves for work, because once he’s gone, there's nobody to help me lift her. Our visiting nurse shows up around 8:30, so she mostly just handles washing up, brushing teeth, and maybe changing a diaper if Mom hasn't already had to go. We tried lifting her together once, and she just slipped right onto the floor. Luckily, my boyfriend was nearby and jumped in to help; the two of us simply couldn't manage it. That's really the biggest hurdle for us; everything else regarding her care feels doable, but the physical lifting is the struggle.
For those quick one or two-hour gaps, I've managed to find help through a volunteer from the local hospice association, so when I absolutely have to run errands in town, I call a volunteer, but that's a rare occurrence. For now, Dad and I just coordinate and make it work somehow.

Girl! 🙏 Respect!🙏

When it comes to the lifting, they tried explaining the "proper technique" to me. I asked the nurses at the hospital, and they showed me—and honestly, kill me now—I still don't get it. I just remember them gesturing, saying "like this," while giving these totally vague demonstrations. Things improved for a bit so we didn't need to worry about it, but it'll be necessary again soon, and I am just not ready. It's like my brain wiped that part of the memory clean. It is physically impossible to lift a completely limp patient; it feels like they weigh 550 pounds.

Call me crazy, but I care, yet my brother and I actually started laughing😲 (probably because we snapped) since we couldn't even lift what felt like 90 pounds together.