Support resources for families dealing with cancer and other serious illnesses

There were other families who complained about the vascular ward over at Mayo Clinic regarding inadequate care back when my mom was admitted there. I’m honestly not sure how to track those people down, but I really want to connect with them if I can. I feel like they should at least trigger an inspection, just so someone can see the disastrous postoperative care protocols being used on that unit. It seems to me that more vulnerable patients practically don't stand a chance at recovering... because without high-quality nursing and proper medical support, there’s just no way to heal properly.

Sent from my iPhone 13 using Reddit

mistyjackal842—clear out your inbox so I can actually send you a DM!

I really wish I could just clear out my inbox already, but for some reason, I can't get it to work on my iPhone 13 at all.

Sent from my iPhone 13 using Reddit

Hey everyone.
First time posting here, but I think I’ll be sticking around for a while, because...

My sister was diagnosed with breast cancer. She had surgery about 5 or 6 months ago, but now metastases have shown up. They're in her sternum, femur, ribs, and liver. Not to mention the lymph nodes.
The bone pain started about two months ago. It hurts, but not enough to require heavy painkillers yet. An X-ray didn't show much, just the PET/CT scan (honestly, seeing those "spots" on the scans is pretty grim), so I'm hoping it's not quite as bad as it looks. Though, with today's tech, an X-ray might have caught it sooner.

She handled the chemo with Taxol and Herceptin pretty well back then. Now she’s starting chemotherapy using the CAP protocol. There isn't much info online about this specific one, so if anyone here has gone through it, could you share what the side effects were like and how effective it was? Any advice or helpful links would be appreciated.

Usually, I'm an optimist—I can find a silver lining in almost anything—but this is brutal. I'm done with "positive thinking." I don't get it anymore and I don't believe in it. Honestly, "positivity" just makes me angry. From what I can see, the more people push "staying positive," the worse things actually get.

mistyjackal842 said:Thanks for all the support, everyone. I tried calling the White Phone, but it’s just an automated system at that number...

mistyjackal842,

My mother passed away due to medical negligence—basically doctor error/carelessness/rudeness—at a different hospital. My dad hired a lawyer and sued them. The whole thing dragged on for about ten years before we finally won the case. I have no idea how it would have gone without an autopsy, but that was the key. The process was so draining, uncertain, and just "dirty"; you can never gather enough evidence, so the autopsy was everything. It was expensive, too. I don't know how they survived financially if the hospital had won. I wasn't deeply involved in the specifics, but between lawyers, one expert witness, then another, plus all the appeals... I honestly don't know how my old man handled it mentally, physically, or financially. It isn't easy, but it can be done. It takes someone brave and relentless. Personally? I couldn't do it.

Just to be clear, I'm not saying doctors are all villains or lazy jerks because of this. I've met plenty of conscientious, kind, and attentive ones. I believe most of them are, and I really respect the medical profession.

Hey goldensailor0, looks like you’ve unfortunately joined the club too. You should really check out page 336 of theman's thread—he gives some killer advice regarding books and nutrition via those eBay planetopia listings; I honestly think there's a lot of solid stuff in there. You've gotta fight this battle on every single front—healthy eating, modern medicine, boosting your immune system—it’s all absolutely vital! I actually have three neighbors who survived breast cancer twice and they're still here with us today. You just have to keep fighting, even when it feels impossible. Please, just be there for her—she needs that support more than you know, especially with all the ups and downs ahead. Also, definitely look into that Marijan jošta-treatment involving dandelion root.

I've cleared out my inbox, so feel free to send me a DM.

I know quite a few good doctors myself, too. My mom and I actually had a really terrible run-in with vascular surgery—it happened at the worst possible time, right when things were critical for her survival. Now, there are plenty of great doctors at the Mayo Clinic in other departments, like hematology or nephrology; I never even thought to assume everyone there was bad. But the care for immobile patients? It’s just not good, especially in that vascular surgery unit. I suppose the strike made things worse, but honestly, it felt more like a lack of cooperation between the nurses and the surgeons. Those nurses really should be coordinating daily with the internists regarding medication for the high-acuity patients, but that just doesn't happen because they're so reluctant to write internal referrals, especially for the internists. They might call a neurologist, too, but that wasn't even the priority for my mom. In fact, those surgeons called a neurologist for her on Sunday, probably suspecting a stroke. Even though they knew she had significant bacteria in her urine from the catheter and she was running a fever, I don't know... I truly don't know what they were waiting for to start IV antibiotics. She developed that fever last Sunday, and I spent that entire day pleading with every doctor I could find to just start the antibiotic treatment. There was even an anesthesiologist who happened to pass by who could have helped if he wanted to. I mean, it shouldn't matter that he's from a different department, since they participate in surgeries alongside the surgeons anyway. But even that anesthesiologist just pointed me back toward the on-call surgeon, who didn't seem to take my mom's fever seriously at all, despite how much I begged him. On Monday, they took her for that Brain CT Scan, which ended up being fine. So, they were basically heading in the completely wrong direction, even though her blood work and urine tests were clearly pointing toward a severe bacterial infection that needed immediate treatment.

..Yeah, mistyjackal842, you hit the nail on the head. My mom went through the exact same thing. They completely ignored the tests that were obviously necessary. My dad kept pushing them to run the diagnostics—he actually knew his way around a medical chart—but they just acted like they knew better... or maybe they were being smart by waiting for the hospital to bleed a few extra bucks out of us. Looking back, it was probably just bad timing, heavy traffic, everyone being on vacation... kind of like a strike.

On the flip side, a doctor at that same Mayo Clinic saved my life a few years ago after a car wreck. A neurosurgeon. Honestly, neurosurgeons are the GOAT. Internists should be behind bars... okay, I'm kidding, mostly. I couldn't write without a little sarcasm. How else would I have survived this whole mess? This life has been pretty much a disaster from day one, with maybe a few decent moments, and even those weren't exactly brilliant. ...And I still consider myself an optimist..

Hi everyone.
My grandfather was diagnosed with pancreatic cancer about a year ago, though they didn't recommend chemotherapy because he’s 80 and just doesn't have the strength for it. He's had several biliary stenting procedures—I'm not entirely sure of the technical term, but it was to manage his pain.
On top of everything, he’s diabetic and relies on insulin, but since the cancer hit, he has absolutely no appetite. Everything turns his stomach, so he barely eats; one day, it actually led to him falling into a diabetic coma before they managed to pull him out.
He’s become terribly thin—just skin and bones—and he's constantly in pain and running fevers. He was even wearing a heavy jacket in the middle of summer... and as he puts it, he "can't even lift a foot," meaning he's incredibly weak and struggles to move at all.

To be honest, I'm not really here looking for medical advice or treatment tips; I just came here for a little bit of support.
Since I found out, I’ve done nothing but cry. What hurts most is seeing my mom go through this—she’s a tough woman and doesn't show much emotion, but I know deep down how much this is crushing her.
And honestly? I have no idea how to act in situations like this.
Every single time my phone rings and it's her calling, I get this sudden, paralyzing fear that she's going to tell me he's gone.
I’m painfully aware that the moment is approaching, but I am just not ready. I don't think I ever will be.
I understand the logic that if someone has to go first, it should be the eldest, but that doesn't make it any easier.

I'm wishing healing to everyone fighting this, and strength to those who love them.
👋

@coppereagle10/">@@coppereagle10:
I totally get where you're coming from. My dad is fighting esophageal cancer that’s spread to his bronchi too. He can't even swallow, so he's on a feeding tube now. It's brutal—he coughs up blood and bits of tissue, and the pain in his back and chest is just constant. He’s lost a ton of weight, though he wasn't exactly big to begin with. Honestly, watching this is agonizing, and there's nothing we can actually do to fix it. I think the hardest part is seeing my mom, who used to be so active, now stuck by his side 24/7, spending her whole day cooking and pureeing food just to feed him. He’s become so irritable and argumentative, too, so it's just this endless, miserable cycle that I wouldn't wish on anyone.
There aren't really any words that help. No matter how much someone tries, nothing makes it better. I guess I just know what's coming for us, and it feels inevitable and very close. :'(

Sent from my device using Reddit

Having lost my own mother after watching her suffer through a long, agonizing decline, I can tell you this: the ultimate act of love for someone in pain is choosing to put your own desperate need to hold on aside and sincerely wishing for their passing. It sounds harsh to some, but letting go is actually a profound gift—it lifts that crushing weight off the shoulders of someone battling a terminal illness. Every goodbye hurts, especially when it's a parent, but they are inevitable. Learning to accept that reality and move forward is just one of those brutal, necessary parts of growing up and truly maturing.

My mom wasn't technically terminal, so I really held onto this hope that she’d hang on for a bit longer, even if her body was failing her. But now? Now I’m dealing with certain people from the Mayo Clinic—who are retired now, mind you—basically trying to pressure my dad over the phone. They’re clearly worried I might actually take action regarding Mom’s care. Well, they can forget that. If anything, their interference just gives me more fuel to fight. There are definitely people out there supporting me in taking this forward, though they aren't tied to the hospital staff. I spent countless hours there, just watching, and I saw the medical errors happening with my own eyes. Why on earth would I stay quiet about this? It's not like they're going to kill me, too. Besides, I'm way too young for all this.

Sent from my iPhone 13 using Reddit

mistyjackal842, I'm 100% with you on this. Honestly, the way they’re reaching out to you during such a brutal time just proves they're guilty. You should definitely take action—I know it won't bring your mom back, but those people need to pay.

Angela Wright, honestly, reading what you wrote brings me some kind of peace in all this sadness. When my dad first got sick, I was constantly at church praying for him to get better. As things got worse, I went back and just asked the Virgin Mary to do whatever she thought was best for him (I’ll admit, I’m not exactly a regular churchgoer). Not long after that, he passed away. I spent so much time blaming myself—wondering what kind of person I was, knowing how much he loved life. I felt so selfish, like I just couldn't take the pain anymore, or like I hadn't prayed hard enough. I just wanted to say that your perspective actually helped me a little.

Listen, mistyjackal842, your mother’s situation is a completely different beast. She was stripped of her right to receive the best care available, which robbed her of any real chance to fight for more precious time with the people she loves most. That quality of life—that's what actually matters here.
Linda Patel21, you have absolutely nothing to be ashamed of; if anything, you should hold your head high. As a person of faith, you did exactly what Christian teachings advise: you surrendered your father into God's hands. I made that same choice myself, and God showed His mercy by giving my mother a peaceful passing and leaving me with true peace of heart.

I don't even know what to say... everyone deals with losing their loved ones in their own way. I didn't want my mom to die—I could see she was fighting—but those last two weeks? She couldn't even speak because the pain was just too much. There were moments when she was conscious, but she’d drift off constantly; if she hadn't been on morphine, there’s no way she would've made it through that. Anyone who has actually gone through this knows—it's pure agony for them and for us. She never once complained about the pain, though; she just suffered in silence. It's easy for people to chime in and say, "just accept it," but we weren't raised that way. We aren't like, I don't know, some cultures where people leave a mass singing or celebrate the transition to a "new" spiritual life at the funeral. That's just not how we do things here. Hang in there to everyone out there fighting alongside their sick loved ones—you have to find a way to stay strong even when you're drowning in grief.

I honestly don't get why doctors feel the need to say so much. I guess if they don't actually have anything useful to offer, they should just stay quiet instead of constantly suggesting things I should do. It’s like... why does it matter so much to them? They aren't the ones living this. I lost my mom when I was only 35, and she meant everything to me. She was 68, and she was my whole world. First it was my grandparents, and now her too.

Sent from my iPhone 13 using Reddit

I was reading online that some of these patient advocacy groups work directly with Secretary Ostojić—I even saw that the Secretary himself goes to visit them. I guess you wonder if there’s any way to reach the Secretary through those organizations? Maybe I could present my mom's situation to him directly. If I have to go through the whole formal petition process, it feels like it'll just drag on forever... I'd much rather handle it more personally. Or, if not him, maybe I could get in touch with one of his assistants.

I really don't want anything to do with contacting the Director of the Mayo Clinic. In my opinion, she's just protecting the hospital's own interests. Honestly, I suspect she probably knows all about the issues within certain departments, but she just isn't doing anything to fix them.

Sent from my iPhone 13 using Reddit

Morning,
A few days ago we found out my mom has a malignant uterine fibroid (she actually just had her uterus and ovaries removed a couple of weeks back). We don't have all the details yet, but right after the surgery, they told us it was definitely cancerous and that she might only have 2 or 3 years left. The lab results came in, and they said she needs to follow up with oncology immediately. She doesn't know anything yet, and honestly, I have no clue how we're even going to break the news to her. 😢 What’s really messing with my head is how the doctor could give a 2-year prognosis right there in the OR based on some rushed pathology report from the surgical suite.

slypuma said:Good morning,
a few days ago we found out Mom has a malignant uterine fibroid (her uterus and ovaries were removed a couple of weeks ago), and we don't know the full details yet. Immediately after surgery, they told us it was actually malignant and that she might only have 2-3 years left. The lab results came back, and we were told she needs to report to oncology right away. She doesn't know anything yet, and honestly, I don't even know how we're going to break the news to her. 😢 What’s really eating at me is why the doctor would give a prognosis of 2 years immediately after the operation based on some rushed pathology done right there in the OR.??

Short and sweet: Because he's an idiot.
The guy is just working off raw statistics and rough guesses. He's basically a robot who specializes strictly in surgery, not oncology; he just cuts out what needs to be cut like he's on an assembly line and calls it a day. These guys often have zero clue how to actually interpret statistics—90% of doctors are completely lost when it comes to those kinds of mathematical probabilities. Mom is going to get treated, and she’ll be fine, God willing. She has radiation and chemo ahead of her. Forget all those stats and numbers, because no sane person can predict this with certainty, nor should they dare to spout such things without being asked. If I had a dollar for every wrong prognosis I've ever heard, I wouldn't be sitting here typing; I'd be planning a getaway to Tenerife with a bunch of wealthy Russians. Right now, the focus needs to be on getting through the treatment and living one day at a time. I know plenty of women who had everything removed, powered through oncology, and have been living perfectly normal lives for 20 years since their diagnosis.