Support resources for families dealing with cancer and other serious illnesses

mistybadger55 said:Honestly, I'm kind of at a loss for words on how to even encourage you 😢, I am just so sorry about what's going on with your dad. Just try to stay strong together while he deals with this... he’ll probably be totally crushed—I mean, who wouldn't be?—but you can't underestimate the human will to live... maybe he'll surprise you all once the initial shock wears off.
Is there any chance for a hip replacement down the road, once things settle, just so he can actually sit up?
Hang in there and stay brave!

I always try to look on the bright side and stay positive—if I didn't, I would've cracked a long time ago. We're all his biggest supporters and would do anything for him.
About 11 or 12 days ago, he had his first leg amputation, and while he was recovering, I was right there feeding him, washing him, massaging him, and helping him move—and my mom and sister were doing the exact same thing. We'd do anything for him! He's family, after all. We're going to be his rock. But we're scared, because Mom thinks he might not be able to handle it. And honestly, there's nothing worse than spending the rest of your life wishing you'd just died on that operating table.

He actually had hip replacements before, and he never really embraced them—he wouldn't even do the physical therapy he was supposed to. That's why we're so worried now. He's been bouncing around hospitals for like 3 or 4 months already, and he'll need another 3 months to recover from the amputation... I just don't know how he'll wrap his head around it mentally.
Still, Dad has always been a fighter; he's survived everything the doctors said he wouldn't! I'm just hoping that once the dust settles, he'll decide to fight—first for us, and then, most importantly, for himself—so he'll actually try to do the exercises.
As for sitting normally, I don't think there's an option to just "fix" it, since he doesn't have the muscle left, just the pelvic area... But with enough rehab, some assistive devices might help him get by. He could definitely find ways to manage his daily routine and still feel fulfilled.

It's going to take a ton of effort, willpower, and most of all, time. But I'm holding out hope!

It just breaks my heart seeing him struggle so much lately—he’s honestly one of the best people I know, always looking out for everyone else and never causing a lick of trouble. My sister and I were his whole world, especially since he became a dad later in life, and he truly deserved nothing but the absolute best. It’s just devastating to see him go through something so awful, something you wouldn't even wish on your worst enemy...

Chloe Gray5 said:It breaks my heart how much he’s suffered these last few months. He’s such a genuinely good man who never caused anyone trouble and was always there to lend a hand. My sister and I were his whole world since we came into his life later in his life, and he deserved nothing but the best. Instead, he’s been hit with things no one should ever have to endure...

Damn it, situations like this just wreck me—they leave me feeling frustrated, heavy, and just plain sad. I’m so sorry it’s come to this. 😢I honestly thought the amputation would be the end of the struggle.
You know, this kind of crap happens to everyone without warning or rhyme or reason. But when it hits a truly good person, it feels like a gut punch to all of us. Beneath our skin, we're all just vulnerable and fragile. But we also possess this incredible capacity to adapt and a mental toughness we don't even realize we have until we need it.
I really hope he finds that inner drive to live life to the fullest within his new circumstances. If he's a dog person, I can't recommend getting him a dog enough. A dog doesn't care about your limitations or what you've lost; they just see you for who you are, and to them, we're perfect. If he loves animals, having a companion could be the ultimate motivation for his rehab.
When you get a chance, show him this short clip.

We’ve got a dog at home, and honestly, my dad is absolutely crushed without him—he was always their person. I was thinking once he’s feeling a bit more stable, maybe we could wheel him out in front of the hospital just to catch a glimpse of the pup; I think seeing that tail wagging would mean the world to him 🙂.
I haven't been able to find any decent forums specifically about limb loss, and man, I have so many questions. Like, how do you even start teaching them to sit or walk again? What kind of prosthetics does Blue Cross Blue Shield actually cover, and is it worth paying extra out of pocket to get something higher-end? Plus, how long is this recovery really going to take, and most importantly, when can he finally head home? He's totally over being stuck in the hospital—it's really taking a toll on his mental state...

Chloe Gray5 said:We have a dog, and my dad misses him terribly because he’s used to being his constant companion. I was thinking once Dad starts feeling better, maybe we could wheel him out in front of the hospital so he can see the dog; I think that would really lift his spirits 🙂.
I haven't found many forums specifically about amputation, and I have so many questions. How do you learn to sit or walk again? What kind of prosthetics does Medicare cover, and is it possible to upgrade to a better model by paying the difference? How long does recovery actually take, and most importantly, when will Dad finally be able to go home? He’s had enough of the hospital; being stuck here is absolutely destroying him mentally...

Dad will likely head straight into some rehab at a specialized facility, because he needs to start strengthening what he has left and adapting to his new reality immediately. He’ll probably need a wheelchair, too, because honestly, without hip stability, I don't see him being able to use any kind of prosthetic yet. I strongly suggest he takes full advantage of every single benefit tied to his disability status, from designated parking to other perks. Look into that—it's a must!

Angela Wright said:Dad will probably head straight to some rehab center—maybe somewhere in the mountains—since he needs to start working on those remaining limbs ASAP to get stronger and adapt to the "new normal." He’ll likely need a wheelchair, too, because honestly, without hips, using a prosthetic is gonna be a huge struggle. Definitely look into all the perks he'll get through his disability benefits, from reserved parking to other stuff. Seriously, check it out!

There is a prosthetic, sure, and while he won't be walking quite like he used to, being able to limp along is way better than being stuck in a chair forever.
I'm thinking he'll just head home first before doing any rehab—he's in rough shape right now. Like I mentioned, he's lost a lot of weight and doesn't even have the strength to sit up, so he needs to recover first. Rehab is going to be brutal, especially trying to walk with a prosthetic when most of the weight falls on his good leg—and that leg was already shaky since he has an artificial hip and never really worked it out. Plus, he wasn't very active before, just hanging around the house and yard, which probably didn't help with the clogged arteries, atherosclerosis, or the smoking... so he's really gotta move more now for the sake of his health. The more he moves, the easier it'll get.

I wanted to jump back into this discussion. I’ve been posting about my friend’s cancer battle for about a month now. She’s been hospitalized for a week and a half. They were originally planning surgery to try and remove part of her bowel because she hasn't been able to go to the bathroom for six days and has completely stopped eating. However, after running some tests, the doctors decided she’s just too weak to undergo anything more invasive; they feel there's no point in putting her through further procedures. From what I understand, she’s mostly lucid, though she drifts in and out occasionally. The day before she was admitted, she called asking me to come over, but I was down with a high fever, so I told her I’d visit the next day. I didn't make it in time. She told me she doesn't want me at the hospital right now, watching her face Death. I’m struggling with this intense urge to be there, to say my goodbyes, but they say there's no hope left. Every three days, they have to drain fluid from her abdomen. I’m at a total loss. Her family is respecting her wishes, so they won't even tell me which ward she's in. I feel terrible that I wasn't by her side. I'm planning to head over to her mother's house now to see if there's any news.

Angela Nelson51 said:I wanted to jump back into this discussion because I’ve been writing about my friend who has cancer... it’s been about a month since I started posting about her. She’s actually been in the hospital for a week and a half now. They were supposed to perform surgery to try and remove part of her bowel because she couldn't go to the bathroom for six days straight and had stopped eating entirely. However, after running some tests, they decided she was just too weak and that there was no point in putting her through more procedures. The last I heard is that she’s mostly lucid, though she drifts in and out occasionally. The day before she went into the hospital, she called me asking me to come see her, but I was sick with a high fever, so I told her I’d come the next day. But when I arrived, she wasn't there. She told me she doesn't want me visiting her in the hospital right now to watch her face Death. Meanwhile, I have this overwhelming urge to be with her, to say my goodbyes, especially since they say there's no hope left. Every three days, they have to drain fluid from her pelvis because it keeps building up... I don't know what to do. Her family is respecting her wishes, so they won't even tell me which room she's in. I feel terrible that I'm not by her side right now... I'm planning to head over to her mom's house now to see if there are any updates.

I am so sorry. 😢
John Doe with her mom and ask her to let your friend know how much you truly want to see her, while making it clear you'll respect her decision if she refuses.
There isn't anything else you can do. 😢

Hey everyone.

Unfortunately, I’m joining this thread. Saying "unfortunately" because if I weren't here, it would mean everyone around me was healthy.

Sunday night, my closest relative—basically my sister—fell ill. It was bad. Since she lives out on an island, she had to wait for the ferry to get to Miami. Once she arrived, she went to the ER with my mom. They told her it was an intestinal blockage... just couldn't pass anything. She got an enema and they sent her back home to the island.

Yesterday afternoon, things took a turn for the worse. It was so bad this time that an ambulance from the city had to go pick her up and rush her back to the hospital.
They ran urine tests and sent her for a CT.
After the CT, they told her it was a tumor.

As of this morning, it's confirmed. Colon cancer with liver metastases. Surgery is scheduled for tomorrow at 7:30 AM.
The doctor thinks they caught it in time.

She's young. Only 24. She has a 3-year-old daughter... I'm really hoping everything turns out okay.

I feel pretty helpless, honestly. I want to do something to help, but there's nothing I can actually do.😢

Aaron Gray, your support is worth its weight in gold. Don't waste your energy pitying her; instead, focus on helping her maintain as much of her normal routine as possible. Having a malignant diagnosis doesn't automatically mean she's facing Death—it means she’s entering a fight. And if you want to win a high-stakes fight, you have to understand your enemy inside and out and ensure your support system is rock solid. That’s where you can truly make an impact.

If I'm reading this right, we're talking about a tumor in the colon roughly a meter in size?
She is incredibly young to be dealing with this. Usually, people don't see this type of cancer until they're at least 50. Has anyone else in the family dealt with this specific type of tumor before?
If there's no family history, it's entirely possible that an underlying condition, like Chron or Celiac disease, caused changes in the colon that eventually progressed into cancer.

Hi there, I’m not sure if anyone else is still reading this... but I was hoping someone could help me out. My dad was just diagnosed with a Grade IV glioblastoma. He’s already had surgery, and tomorrow he starts radiation and chemo. He’s been getting a little lost during our conversations lately—mostly when we talk about the time; he struggles to tell what time it is or takes a moment longer to process things. Could you please share any information you have regarding glioblastoma treatment? Is it actually possible for someone to survive more than 10 years nowadays using modern medicine, or perhaps through alternative therapies? I'd really appreciate any insight you can offer... money isn't an issue for us right now.

My heart goes out to everyone on this thread searching for help and support while battling some of the most devastating illnesses of our time... It hit home for me personally because a close friend of mine, who is supposed to be celebrating her 27th birthday in just a few days, is actually counting down her final moments. Seeing this makes it all too clear that disease doesn't care how old you are. It's absolutely devastating. I don't have the medical expertise to offer any real help, but please know that I truly empathize with all of you.

Olivia Cooper64 said:Hi, I don't know if anyone is still reading this... but I would love some answers. My dad was just diagnosed with Grade IV glioblastoma. He’s had surgery and is supposed to start radiation and chemo tomorrow... he’s getting lost in conversation quite a bit; mostly when we talk about time, he doesn't realize what hour it is and it takes him longer to process things. Can you please tell me everything you know about treating glioblastoma?? Is it actually possible for someone to survive more than 10 years now with modern medicine, or maybe alternative medicine? Please let me know... money isn't an issue.

I don't have anything pleasant or positive to say regarding glioblastoma treatment. 😢
There are people who have lived longer, but they are a tiny minority—almost statistically insignificant.
From my own experience, surgical removal and radiation are the most effective routes. Temodal seemed to do more harm than good for me, and as for "alternative" medicine, I could write an entire book on how they fleeced us and ripped us off for absolutely nothing.
The only thing giving me any shred of hope is the application of nanotechnology in treatment. I recently watched a documentary on CNN about medical nanotechnology featuring a clinic in France that uses glucose-based nanoparticles administered via IV during an MRI scan. Since an MRI uses such a powerful magnetic field, and because tumors crave glucose, the cells pull in those particles along with the sugar. Because the particles are small enough to cross the blood-brain barrier—which is the massive hurdle in brain tumor treatment—they heat up within the magnetic field and literally cook the tumor cells from the inside out. Apparently, their results are incomparable to the success rates of either radiation or chemo, but thanks to the massive pharmaceutical lobby and their obsession with profit margins on drugs, they can't push it through major studies or widespread clinical use. This method isn't invasive and can be repeated multiple times for recurrences, unlike something like radiation.
Honestly, I haven't sat down to Google which specific clinic in France it was, so you should look into it.
EDIT: I found one study posted here; it looks like they are trying to push it as a carrier for chemotherapy, which is the only thing I could find: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964525/, but that's not it. This is specifically about pure nano + glucose used during an MRI.

Angela Wright said:Aaron Gray, having support like that is worth its weight in gold. Don't feel sorry for her; just do what you can to keep her daily life as normal as possible. A malignant diagnosis doesn't mean Death... it means she's going to fight. And to fight well, you have to know your enemy and have a solid support system. That's where you come in.

If I'm reading this right, we're talking about a tumor in the colon about a meter thick?
She's incredibly young. Usually, people don't see this kind of tumor until they're at least 50. Is there any history of this specific cancer in the family?
If not, it’s possible there’s an underlying issue like Chron or Celiac disease that caused changes in the colon which eventually turned into cancer.

If I understood the doctor correctly, yes.

As far as I know, no one in the family has had this specific type of cancer.
But my aunt—my mom's sister—had breast cancer, my grandma too, and my grandpa had lung cancer.

Aaron Gray said:If I’m reading the doctor correctly, then yeah.

As far as I know, there isn't anyone else in her family who dealt with this specific type of cancer.
However, her aunt—who is my mom—had breast cancer, her grandma had it too, and her grandpa had lung cancer.

That doesn't really move the needle; the crucial detail is whether they were all fighting the exact same tumor. They absolutely need to rule out things like Chron or Celiac disease, or any other kind of autoimmune disorder.

If she actually had one of those conditions, what would we be looking at... what kind of symptoms or issues should have cropped up?

Aaron Gray said:If she actually had one of those conditions, what symptoms should we be looking for? What kind of issues would typically pop up?

Think of Chron as a chronic inflammatory bowel disease, whereas Celiac disease is an intolerance to gluten in food. Both trigger changes within the digestive system that might—or might not—show up as physical symptoms, if you catch my drift.
Instead of me listing everything out for you, your best bet is to just plug both diseases into a search engine and look over the symptom lists yourself.

Basically, any of this could be the underlying reason why someone would develop colon cancer at such a young age, and it’s absolutely vital that the root cause gets treated right alongside the cancer itself.

Another possibility crossing my mind is that we aren't even dealing with carcinoma here, but rather some type of soft tissue sarcoma that mimics cancer during this stage of diagnosis. To be honest, those types of neoplasms are actually more common in younger people than standard carcinomas are. You won't get a definitive answer on what we're actually facing until after the surgery and the pathology analysis of the removed tissue is complete.

We were told Dad might be heading home this Friday. We’re honestly a bit skeptical—he isn't quite back to his old self yet—but things are definitely looking up.
We’re gonna try to grab a hospital bed to have ready before he’s fully recovered.
Now we're stepping up to manage his pressure sores ourselves. Does anyone know how often these need to be dressed, or what kind of supplies we actually need to stay on top of it?
Angela Wright, if you could weigh in—you mentioned something about this last time—any bit of advice would be a lifesaver. Thanks 🙂.

Chloe Gray5 said:We were told Dad is coming home this Friday. We don't think he's fully ready yet—he isn't as lucid as he used to be—but things are looking up.
We're going to try to get a hospital bed while he recovers.
Now we'll have to manage his pressure sores ourselves. I need to know how often wounds like that need dressing, what supplies are required for wound care, etc.
Angela Wright, if you could answer me, you mentioned something about this last time; any info is gold. Thanks 🙂.

Go straight to his primary care physician right now and arrange for a visiting nurse to set up home health care, which Dad is entitled to. A field nurse will come out to handle the pressure sore dressings and take care of all the necessary medical needs, including bathing him once a week.
Regarding the bed, your best bet is calling nursing homes—both private facilities and state-run ones—to ask if they rent them out. Many of them keep beds in stock and rent them for about $300$133 a month. Also, make sure you specifically ask for that specialized mattress I mentioned before. Nothing else works quite as effectively.
Check with Catholic Charities too; they might be able to help by lending you a bed, though they usually require a written request along with a copy of the discharge papers. The Hospice Friends Association is another option; they typically just ask for his medical history and will provide a bed upon signing a waiver, but again, that's all dependent on what they have in stock. Try to get all this organized immediately so Dad can actually get home.

EDIT: Make sure you insist that when Dad arrives home, his doctor performs a house call to assess the situation and get a firsthand look at his condition. It’s their responsibility, and it is absolutely critical for building a strong relationship with the doctor, which is vital when dealing with patients in this state!

Can someone point me toward the options or rights regarding a patient in this situation? I need to know what the procedure looks like when;

1) They have Category A supplemental insurance

2) They’re battling a malignant tumor of unknown origin. After six cycles of chemo, the primary tumor shrunk significantly, but the carcinoma has spread throughout the body and their general condition is declining.

3) The treating specialist has essentially given up and doesn't know what therapy to try next.

4) The patient wants to seek treatment abroad.

Is there any way Medicare could cover—or at least partially fund—this trip to Germany?

If that's an option, how does one actually go about it?

Thanks.