Support resources for families dealing with cancer and other serious illnesses

Robin Stewart44 said:I'll say it again—every cancer is brutal, but bone cancer is easily the worst. Tomorrow marks ten years since my father passed, and I can still feel it like it was yesterday—the way he would scream at every single thing. A wrinkle on a shirt, a sip of water... everything. Or nothing at all. He just screamed constantly. Twenty-four hours a day. At that stage, morphine barely touches it; it might take the edge off slightly, but the pain remains absolutely maddening.

You say you don't know how to help... unfortunately, there isn't any. I'm sorry if that sounds blunt, but there simply isn't a solution. Another terrible part of that experience was how hospitals in New York City wouldn't even admit a patient like that when they were terminal (and back then, I knew someone at every facility, yet even that didn't work). I wonder if things are still that way today?

My father was on liquid morphine... I don't know much about these modern patches. His primary care doctor had to write a new prescription almost every single day because you couldn't get more than a few doses at once. I ended up carrying that morphine to the hospital myself because they didn't have enough on hand... yes, it was that awful. Doctors are restricted to specific amounts—which is why you end up fighting with the family physician. They are allowed to give up to a certain dose and no more, otherwise, they could face criminal charges for essentially performing unauthorized euthanasia.

I’ve been out of that world for many years now, so I have no idea where one would find morphine through unofficial channels. But, if I were back in that situation—without a second thought or a moment of hesitation (back then I was only twenty and still naively trusted the doctors and everyone else)—I would try to find it by any means necessary just to give it to my dad/mom. Just so they wouldn't hurt. Just so they wouldn't moan, or wail... Not because I couldn't sleep from the screaming, but because they were in pain, and you feel so utterly helpless watching it happen.

It seems like three years is quite a long time to fight this type of cancer; I'm surprised no vital organs have been affected yet. Where is the primary tumor located? I am so incredibly sorry you are all going through this misery for such a long time. I wish you all the strength, courage, and wisdom in the world.!!!

The primary cancer is breast cancer, and her doctor's prognosis was about two years because the bone metastases were caught immediately. Since then, they've just continued to spread throughout her entire skeleton. She actually just hit her one-year mark this past Thursday, but within a single month, her condition took a horrific turn; she went from being mobile to completely bedridden. Within those four weeks, we tripled the dosage on her patches, and now she finally sleeps at least through the night. Every movement causes her pain. I managed to scrape together the funds and bought a medical bed with an anti-decubitus mattress today. It should be delivered and set up tomorrow morning, so I'm hoping it brings her some relief.
I don't understand why we have to argue with the doctor every single time just to get her a stronger dose. What is the logic behind it? Isn't providing mercy to patients in this state actually the most humane thing to do?

ironsailor22 said:It’s primary breast cancer, and her doctor gave her a prognosis of about two years because they caught bone metastases right away, and since then, those have just been spreading through her entire skeleton. She actually just hit her one-year mark this past Thursday, but things took a terrifying turn within just a single month—she went from being an active woman to being completely immobile. Within that month, we tripled her dose of Flastere, and now she can at least sleep through the night. Every little movement hurts, so I managed to scrape the money together and bought a medical bed with an anti-decubitus mattress today. It gets delivered and set up tomorrow morning; I just hope it brings her some relief.
I honestly don't get why we have to fight with the doctor every single time just to get her a higher dose. What is the logic there? And isn't euthanasia for patients in this condition actually an act of mercy and humanity?

Unfortunately, mercy and humanity are one thing, but the legal reality is quite another. Beyond the legal hurdles, many doctors are people of faith who view such actions as a major sin. It’s all part of a much larger, more complex issue.
Definitely reach out to Dr. Loncar regarding the pain management, just like slyseal28 suggested. We’re hoping to coordinate a partnership with them soon through our Association, and once we do, we'll post an official update here.
Zoran Loncar, PhD, MD
specialist in anesthesiology, resuscitation, and intensive care
Traumatology Clinic
Address: 19 Draskovic St., New York City
Mobile: 098 23 56 69
E-mail: zoloncar@inet.hr This email address is protected from spam robots and won't be visible if you have JavaScript disabled
zoran.loncar@trauma.

Angela Wright said:Beyond just legal rights, plenty of doctors are religious people, and according to their faith, this is a massive sin.

But isn't it an even bigger sin to sit there and let people suffer right in front of your eyes? 😲

I'm dying to know—if they were actually in that situation, would they be looking for a cure for themselves or for those they love?

Reading these recent posts just broke me. I went through all of this with my mom, and her anniversary is coming up soon. It’s just... awful. Nothing else to say.

brisksurfer said:isn't it actually kind of wrong to just let people suffer right in front of you? 😲

I really wonder if they’d be looking for a cure for themselves or for their loved ones if they were stuck in that spot...

Totally agree.

Kate Reed63 said:I actually started crying reading these recent posts. I went through all of this with my mom, and her anniversary is coming up soon. It’s just awful, honestly...

It’s not meant to be a consolation, but honestly, each year gets a little easier to handle... though I still don't have the strength to visit the cemetery myself (which is why I say time doesn't "heal" anything, it just makes it easier to carry). Hang in there and stay strong. Sending you a huge hug...

ironsailor22 said:It's primary breast cancer. Her doctor gave her a prognosis of about two years since they caught it early, but the bone metastases have been spreading through her whole skeleton ever since. She just hit her one-year mark this past Thursday, but things took a massive turn for the worse in just a single month. She went from being pretty mobile to being completely bedridden. Within that month, we bumped up her Fentanyl dose to three times what she was on, and at least now she can sleep through the night. Every little movement hurts. I finally managed to scrape some money together and picked up a medical bed with an anti-decubitus mattress today. They’re delivering and setting it up tomorrow morning, so I’m really hoping it gives her even a tiny bit of relief.
I honestly don't get why we have to fight with the doctor every single time just to get her a stronger dose. What's the hold-up? And seriously, shouldn't euthanasia be considered an act of mercy and humanity for patients in this kind of state?

ironsailor22, my mom had primary breast cancer too. I don't know the specifics because she decided not to pursue treatment... but from diagnosis to passing, it was about 3.5 years. What you're describing right now sounds exactly like how her final months and days looked. Hang in there—sending you all the strength in the world right now.

brisksurfer said:isn't it a sin to just sit back and let people suffer right in front of your eyes?😲

I’m dying to know if they’d actually go looking for a cure for themselves or their loved ones if they were stuck in a spot like that...

It all comes down to how an individual perceives things and what they choose to accept; it's deeply personal stuff, and honestly, it's a slippery slope once you start digging deeper.
I know exactly what I would hunt for if I were in their shoes...but I am one person, and this world operates on an entirely different set of rules.

Thanks for the reply, Barrett & Angela Wright.
We started using the cream and shampoo, which seems to provide some temporary relief, but now this other symptom has cropped up—diarrhea feels pretty much unavoidable at this point. On the first day, it happened 11 times :-( He’s drinking plenty of tea and eating just a little bit, and thankfully, it's already looking better today. (Down to just twice so far! :)) I'm wondering how long diarrhea lasts before it becomes a serious concern, or at what point we should start taking medication to prevent it or ease the symptoms.

Angela Wright said:Since people dealing with this—along with their families and loved ones—are going through such an incredibly brutal time, and because our society fails to provide enough psychological support or actual help, I decided to start this forum. I’ve been right there in the thick of it myself, so my goal is to create a space where those of us who have faced these struggles can offer advice and real support to one another.

Feel free to post here. I promise I will always be around to reply, offer some advice, or at the very least, stand by you if things are getting heavy. Sometimes being the caregiver is even harder than fighting the disease itself.

Personally, I’ve walked through hell, and I’m still walking through it. No one should ever have to go through this alone.

Sending big hugs to everyone.

...So, I wanted to chime in. My mom suffered for five years from a dangerous stomach cancer called GIST that spread to other organs. To make a long story short, we all went through absolute hell. Physically, she was in agonizing pain, and toward the end, her abdomen swelled up—it was just horrific. But thank God, and thank Dr. Kocman, who recently performed surgery on her despite the odds being stacked heavily against her. We spent five years searching for a surgeon capable of handling this; we looked all over the world, and nobody would touch the case. Then, finally, an American doctor stepped up and did the surgery. I'm still in shock, but it's a positive kind of shock. Everything is okay now. He removed everything—the tumor, the metastases—and had to shorten part of her stomach and large intestine. On the bright side, maybe she'll actually stay "fit" now since she won't be able to eat much! Haha. All in all, she’s recovered, even though they say no one survives more than five years with GIST. Between God and great doctors, miracles happen. Alternative treatments didn't help us much, so feel free to ask me anything about malignant diseases or whatever else you need.

amberdriver8 said:...I just wanted to jump in and share that my mom suffered through five agonizing years with a dangerous stomach tumor called GIST that eventually spread to other organs. To make a long story short, we all went through absolute hell—both mentally and physically. The pain was unbearable, and toward the end, her abdomen was massively swollen; it was just horrific. But thank God, and thank Dr. Kocman, who recently performed the surgery on her despite there being almost zero chance of survival. I won't even mention how we spent five years hunting for a surgeon capable of this; we searched the entire world and nobody would even touch her case. Then, finally, an American doctor steps up and does it. I'm still in shock, but it's a positive kind of shock... she’s doing okay now. He removed everything—the tumor, the metastases—and had to shorten her large intestine and stomach a bit, but hey, at least she'll be "fit" since she can eat less now, haha. All in all, she’s recovered, even though they say no one survives more than five years with GIST. So, between the doctors and God, we made it. Alternative medicine didn't help much, so feel free to ask me for any advice regarding malignant diseases.

That’s amazing! We have experts right here, but they're constantly being squeezed by budget cuts and cost-saving measures.
Is Mom on Sutent?

amberdriver8 said:...I just wanted to chime in. My mother suffered for five long years from a dangerous stomach tumor called GIST that spread to other organs. I won't linger on the details, but we went through absolute hell. Both mentally and physically, the pain was unbearable. Toward the end, her abdomen was massive. It was just horrific. But there is God, and then there is Dr. Kocman, who recently operated on her despite having almost zero chance of survival. Not to mention the five years we spent hunting for a surgeon capable of this—we searched all over the world and nobody would even touch her. Then, finally, an American doctor steps up and performs the surgery. I am still in shock, but it's a positive kind of shock. Everything is okay now. He removed everything—the tumor, the metastases—he had to shorten part of her large intestine and stomach, but hey, at least she’ll be "fit" now since she can eat less, haha. All in all, she is cured. They say no one lives more than five years with GIST, yet here she is. We have doctors and we have God. Alternative medicine helped a little too, so feel free to ask me for advice or anything regarding malignant diseases.

Come on, thank God we get to hear some good news here! 😍

Fingers crossed. 👍

Angela Wright said:I know exactly what I’d demand for myself... but I’m just one person, and this world operates on a completely different set of rules.

If you ask me, everyone should at least have the right to choose how they go out... but hey, what do I know?

I wanted to share some good news—my mom’s colon cancer surgery went really well. She’s recovering beautifully, and most importantly, she didn't need a colostomy bag, which was her biggest fear. Her surgeon mentioned that while there are still some traces of metastases on her liver, he’s optimistic they should clear up completely after she finishes chemotherapy... 🙂A huge thank you to everyone who helped me out with information and advice along the way.

brisksurfer said:isn't it a sin to just stand by and watch people suffer through such agony? 😲

I truly wonder—if they found themselves in that position, would they be searching for a cure for themselves, or for their loved ones?...

I couldn't agree more. Watching someone endure such torment without intervention can't be justified by any reasoning—certainly not medical ones.
The same goes for when it involves their own skin; having seen it firsthand, I know they will do absolutely everything at their disposal. It’s quite telling—they might get admitted to the hospital for pain management under constant anesthesiologist supervision, receiving direct spinal injections, while the rest of us "ordinary mortals" are sent to outpatient pain clinics. Those clinics are practically useless—you show up, get a few nerve blocks that stop the pain until tomorrow morning, and then you're right back where you started. It implies you should be trekking back to the clinic every other day, assuming you're even physically capable of moving through that much pain. It's absurd.

Michelle Fowler38 said:Hey everyone...
My mom was diagnosed with colon cancer last Friday. He's 73...
Anyone here have experience caring for seniors over 70... thanks. 😢

My dad is 74. He just had surgery a few weeks ago for a tumor where the small and large intestines meet. It was high, but non-malignant... Since he has heart issues, they spent ten days prepping him for the procedure. The surgery itself took about two hours. He spent ten days in the ICU, but he’s back in his regular room now. They've taken him off the IV, and he seems to be recovering slowly...

Hey everyone.
My mom was recently diagnosed with breast cancer, and they ended up surgically removing it. She was supposed to go through six rounds of chemo, but man, the nausea was just brutal. I actually picked up some Zofran tablets to help her out, but unfortunately, she could only make it through four sessions because the vomiting got so bad it led to some bleeding issues. She never even got a chance to start the Zofran, so if anyone can use them, feel free to shoot me a PM. I have two boxes of 8 mg Zofran; the expiration date is 01. 2012.

I pop in here to read you guys every once in a while. It’s almost been four years since my dad passed, but honestly? It still feels like it happened just yesterday. He was gone within three months of being diagnosed with cholangiocarcinoma—not something they could fix. He didn't have all the luck with the pain, though; at least it wasn't the unbearable kind. I refused to let them take him away from us. He died at home, looking clean, tidy, and peaceful, as Angela Wright would say. And man, am I glad he stayed here. Just the day before he passed, he actually managed to eat some yogurt, and we were helping him up out of bed... he was trying so hard to show us something, even digging through the tool drawers 😕. He clearly wanted to say something but just couldn't. It was frustrating, honestly—he seemed almost mad that we weren't catching his drift! In that moment, he was actually kind of funny; we cracked a few jokes and he even laughed. We got him back to bed, and then the next day, he slipped into a coma. I knew right then he wasn't coming back. The next morning, Mom and I washed him up, freshened him up... I even put baby lotion all over him. He was in his final struggle, but I felt this weird sense of happiness knowing he wasn't stuck in some sterile hospital room, but right here at home. He passed away that afternoon around 2:00 PM. We did what he wanted, had him cremated, and I find myself heading to the crematorium quite often. I'll go there, spend about twenty minutes with him, light a candle, and finally feel at peace. I would never, ever regret keeping him home instead of handing him over to the hospital.

My mother isn't in pain anymore—she passed away yesterday morning.

ironsailor22 said:My mom isn't in pain anymore; she passed away yesterday morning.

I am so incredibly sorry for your loss. I hope you can find some comfort in knowing her suffering has ended and she is finally at peace. That thought was the only thing that helped me. It’s been nearly two months since my own mother passed, and I'm still cycling through a million different emotions. I miss her terribly, yet there is a sense of peace. Hang in there.