Support for families dealing with cancer and other serious illnesses (Part II)

Kenneth Wilson6 said:I’m living in Chicago. Tomorrow we’re heading to an agency to talk about getting 24-hour nursing care, because my mom refuses to even hear about going back to the hospital. We’ll see what the medical board says, and I’m going to ask about the edema—maybe that’s why they want a CT scan? Can you tell me the best way to prevent pressure sores?

Preventing pressure sores:
Change positions constantly—on one hip, then the other, on the back, or the stomach. If she can manage, have her sit up in bed. It all depends on how much mobility she has left.
Massage her entire body with a moisturizer or lotion two or three times a day. Any basic brand works fine. You don't need to be a pro; just rub it in to get the circulation moving and keep the skin elastic.
If she's able, it’s good to have her sitting up in bed with her feet touching the floor.
Watch her heels closely. Use a more nourishing cream there, like a heavy Nivea face cream...

Kenneth Wilson6 said:I live in Chicago. Tomorrow we’re heading to an agency that provides 24/7 nursing care because my mom refuses to even hear the words "back to the hospital." We’ll see what the medical board tells us, and I’m going to ask about the edema—maybe that’s why they want a CT scan? Can you tell me what the best move is to prevent pressure sores?

If you're planning on nursing her at home, you absolutely need a hospital bed with an electric lift mechanism and an anti-decubitus air mattress with a built-in compressor. It works by constantly pumping air through the mattress to create a slight vibration, which stimulates microcirculation—that's the key to preventing pressure sores. We actually got our bed and mattress lent to us from a local assisted living facility. Since the director there was a neighbor of ours, she hooked us up pro bono, but normally facilities or rental agencies here charge about $50 a month to rent those setups. There might be similar programs where you are, so definitely look into it. Another option is reaching out to the Red Cross or local non-profits that handle elder care. I'm certain there are resources like that available if you do a little digging.
Let me be blunt: without a proper bed, don't even dream about providing adequate care. You will all end up completely broken, physically and mentally. I also highly recommend getting a commode chair with wheels to go along with the bed. That was a lifesaver for me. We could just put Mom in the chair, move the commode out of the way, and wheel her right over the toilet so she could go. It meant everything to her dignity. Afterward, we could easily wheel her into the bathroom to shower. Paired with the hospital bed, it’s a game-changer.
My mother was completely immobile for a year and a half. She passed away without a single pressure sore on her body—not one.

We finally grabbed the chair and ordered the mattress, but I totally blanked on the whole thing about renting equipment—seriously, this is why I need your advice more than I admit. I’ll start asking around first thing tomorrow.
There was honestly no point even bothering with the medical board meeting (or whatever they call those consultations at the clinic)—they basically told us we're on our own now. It feels like we've been left to figure everything out ourselves. Mom is getting worse by the day, and frankly, we're all just hitting a breaking point. For now, I’m managing to keep her moving and stay on top of hygiene, but as for the rest... well, starting tomorrow, the home health nurses will be here. They’ll handle the exercises, the massages, and all the other stuff I either don't know how to do or just can't manage.
At this point, I really only have one wish: to make sure we aren't causing her any unnecessary pain and to make things as easy as possible for her.

stormyfox19 said:preventing pressure sores:
change their position often—switch from one hip to the other, then back, or onto their side or stomach if they can manage it—(honestly, it just depends on how much the patient can actually move).
massage the whole body with some hydrating cream or lotion (even the cheap stuff from Walmart works fine) two or three times a day. It doesn't have to be some fancy professional massage—just rub the lotion in to get that circulation going and help skin elasticity.
If the patient is up for it, it’s probably good to try sitting up in bed with their feet touching the floor.
Watch those heels—make sure to use a richer cream there (like Nivea face cream, the blue tin).

Thanks, stormyfox19. I'm trying my best to keep up with all of that.😢

Every once in a while, it’s worth reminding everyone about this book by Dr. David Servan-Schreiber. Personally, I view it as a sort of Holy Grail for anyone lost in the maze of medical diagnoses and everything else that comes with them.

Kenneth Wilson6 said:We picked up a chair and ordered a mattress, but honestly, I didn't even think about renting equipment—so thanks again for the heads-up, that really helps. I'll start making calls first thing tomorrow.
There was zero point in asking for a multi-specialty consultation (at least, that’s what the clinic told us), so now we’re basically flying blind. My mom is getting worse by the day, and we’re just hitting a breaking point. For now, I’m managing to keep her moving and maintain her hygiene, but as for everything else... starting tomorrow, we'll have nurses coming in to handle the exercises, massages, and all the stuff I either don't know how to do or simply can't manage.
Right now, my only wish is to keep her comfortable and make sure she doesn't suffer through any unnecessary pain.

I am so sorry things are taking such a downward turn.😢
I really hope they at least have her dexamethasone doses stabilized.
Hang in there and stay strong. I can tell you right now, having medical professionals involved will be a massive weight off your shoulders. When I was going through this, I was completely on my own. A visiting nurse would stop by, but she could only stay for maybe 45 minutes a day; she was such a sweetheart that she’d often linger for over an hour just to help me out. Around here, you just don't get that kind of 24/7 home care, whether you're looking through Medicaid or paying out of pocket. If I didn't have a doctor in the family, I have no idea how I would have survived it all.

The results from his endoscopy and colonoscopy came back clean, with absolutely no signs of malignancy. It looks like the issue is localized to the pancreas and liver, so thankfully it hasn't spread further. My dad is still waiting on his abdominal CT scan to get the full picture. For now, he isn't on any specific treatment beyond his blood pressure medication and some Zaracet to manage the intense pain in his leg. He’s actually keeping his spirits up quite well—he was even out working in the garden yesterday.
I’m wondering if there would be any real benefit in picking up some silymarin for him.

feralsurfer72 said:The endoscopy and colonoscopy results came back clean—no signs of cancer there. It looks like the issue is strictly localized to the pancreas and liver, so it hasn't spread further. My dad is still waiting on an abdominal CT scan. For now, he isn't on any specific treatment other than his blood pressure meds and some Zaracet for the intense pain in his leg. He’s actually eating everything and was even out working in the garden yesterday.
I'm wondering if there's any point in getting him silymarin.

Silymarin helps stimulate liver cell regeneration, but I can't be certain if that might also inadvertently trigger growth in malignant cells. You absolutely have to talk to his doctor first!

My mother was asking me about it today, and after some thought, I told her it seemed like a "really healthy" choice! I ended up picking up some silymarin, and while browsing online, I stumbled upon this fascinating study from the US National Library of Medicine: Multitargeted therapy of cancer by silymarin
National Institutes of Health link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2612997/
From what I managed to gather—relying quite heavily on Google Translate to make sense of the jargon—it doesn't seem harmful at all.

These findings suggest that by suppressing the cancer cells invasion through the specific inhibition of AP-1-dependent MMP-9 gene expression, silibinin represents a potential anti-metastatic agent. Together, the anti-invasive as well as anti- metastatic potential of silibinin could be of great value in the development of a potential cancer therapy.

feralsurfer72 said:My mom asked about it today, and the answer she got was that it’s "super healthy"! I ended up picking up some silymarin, and while digging around online, I stumbled upon this study from the US National Library of Medicine: Multitargeted therapy of cancer by silymarin - US National Library of Medicine
National Institutes of Health link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2612997/
From what I can gather—using Google Translate to help me out—it doesn't seem harmful.

These findings suggest that by suppressing the cancer cells invasion through the specific inhibition of AP-1-dependent MMP-9 gene expression, silibinin represents a potential anti-metastatic agent. Together, the anti-invasive as well as anti- metastatic potential of silibinin could be of great value in the development of a potential cancer therapy.

Well, then there's nothing stopping us! 🙂

Everything went sideways last night. We ended up at the ER before 10 PM, but we didn't finally make it back home until around 2:30 in the morning. He was in such abnormal, agonizing pain that we almost had to carry him inside. He kept drifting off, losing his sense of place, asking us if we had just come over to rest for a little while. The moaning was constant; he couldn't stay in a single position for even thirty seconds without crying out. Honestly, I don't even want to write about what we experienced in that waiting room. We were stuck there forever because they were mid-procedure on someone else. To top it all off, the ER doctor actually snapped at us, yelling that my father wasn't even an inpatient at the hospital—as if I have any control over his admission status. All I managed to learn from him was that on top of the issues with his gallbladder and liver, Dad is also dealing with an ulcer in his duodenum and gallstones... We eventually ended up at the internal medicine wing on the other side of town, where we had to wait outside. We didn't even get to see the doctor because she entered through a different entrance. A nurse told us she was administering a second IV drip which should help a bit, but insisted he needs to see his primary physician first thing tomorrow to get stronger medication since she can't keep him admitted. She suggested he head back to their facility once he completes a CT scan. So, everything is set for March 18th. The medication they gave him isn't doing a thing; he’s just lying there groaning now, frustrated by how helpless he feels.

In my opinion, this wait is just way too long. That abdominal CT scan really should have been handled as an emergency priority, especially since getting targeted therapy started as soon as possible is the whole goal here. If your budget allows for it, I’d honestly recommend just paying for the CT privately to get it done immediately. How old is your dad now?

Richard Sanders7 said:In my view, this wait is simply unacceptable. They really should have fast-tracked that abdominal CT, especially since getting targeted therapy started is such a race against time. If you can swing it financially, I’d suggest booking a private scan immediately to bypass the bureaucracy. How old is your father?

He was born in 1947, and honestly, until just last month, he was incredibly active and full of life. I actually went looking for a private abdominal CT, but it seems impossible to find one available here in the Midwest; apparently, those specialized scans are only handled at the major medical centers in Chicago. The problem is, he can barely handle the car ride to the hospital anymore. Is it possible for his primary care physician to issue an urgent referral for inpatient treatment?

Hello, everyone... right now, my family and I are both fighting this disease head-on.
My father has colon cancer that has already metastasized to his liver. 😢

What I’m really trying to figure out is where to even begin if I want to start a non-profit association here in my hometown to support patients and their families. Who do I actually reach out to? Should I go through City Hall, the local health department, or somewhere else entirely? And does this have to be a major metropolitan area, or can it just be a small town or a county-level organization?

cosmiclynx14 said:Hey everyone... right now, both my family and I are fighting this disease head-on.
My dad has colon cancer that has already spread to his liver.. 😢

What I really need to know is where to start if I want to set up a non-profit here in my hometown to help patients and their families.. Who do I contact? The local City Hall, the health department, or somewhere else? Does it have to be a major city, or can it just be a small town or county level organization!?

To start a non-profit, all you really need is three people. You can find more details here.
Look, as someone who dove into this with nothing but pure altruism and massive enthusiasm—only to come out the other side having failed quite spectacularly, to put it mildly—I have to warn you: this is an incredibly treacherous and thankless game. You need a circle of rock-solid, trustworthy people around you from day one. You also need a bulletproof legal statute, someone who actually understands how to handle finances and bureaucracy, and someone capable of writing grants, because without those things, the organization won't survive the month. Unfortunately, when it comes to cancer support groups, most people only show up when they have a crisis. They expect you to fix their problems for them, but the second you need them to volunteer or even just show up to an annual meeting—which is a requirement for the non-profit to stay active—everyone suddenly has a conflict. Everyone makes noise when they need a hand, but once their problem is solved, the room goes silent. And don't even get me started on the stress of dealing with members who think their membership gives them the right to harass you late at night or demand special treatment... it's everything. Usually, the actual work falls on the shoulders of two or three people while everyone else just offers "thoughts and prayers." On top of that, you’re being hunted from all sides by corporate vultures. Some companies have legitimate, well-thought-out strategies for working with non-profits, but others will literally chew you up and spit you out. You have to navigate them perfectly, but the catch is, you can't avoid them. There are even predators who target brand-new organizations, join the board, and then manipulate the whole thing to serve their own interests or some third party's agenda.
So, seriously, think long and hard before you jump in. For me, running an association mostly brought misery; it cost me so much peace of mind that I nearly lost my child to the stress, not to mention the crushing disappointment in people and the hit to my own self-esteem. I swore off joining or running any organization ever again. There are plenty of other ways to help people, and posting here is one of them.

Angela Wright said:To start a non-profit, you only need three people. You can find more info here.
As someone who dove headfirst into this with nothing but pure altruism and massive enthusiasm—only to end up having a pretty miserable experience, to put it mildly—I have to warn you right now: this is an incredibly tricky and thankless game. You need a circle of people you can actually trust, a rock-solid legal foundation from day one, someone who knows how to handle the financial and bureaucratic nightmare, and someone capable of writing grants. Otherwise, the organization won't last a month. Unfortunately, when it comes to cancer support groups, people usually only show up when they have a crisis. They expect you to solve their problems for them, but the moment you need actual help with the organization—or even just ask them to show up for the annual meeting required to keep things running—they flake. Everyone screams for help when they need it, but once their issue is resolved, the noise stops completely. And don't even get me started on the sheer amount of stress you endure, only to have some member act entitled because they think membership gives them the right to harass you at all hours of the night... it’s endless. In reality, most non-profits end up being carried by two or three exhausted people while everyone else just offers "thoughts and prayers." On top of that, you're constantly being circled by corporate vultures from all sides. There are some organizations with legitimate strategies for partnering with non-profits, but there are others that will literally devour you and spit you out. You have to know how to handle them, but the problem is, you can't avoid them. There are even people who prey on brand-new non-profits; they join, worm their way into leadership, and then run everything for their own benefit or the benefit of some third party.
So, seriously, think long and hard before you jump in. For me, running an association brought almost nothing but grief. It cost me nearly the loss of my own child because of how much I stressed myself out, and it left me with a massive amount of disappointment in people in general, not to mention my own self-confidence. I swore off joining or running any organization ever again. There are other ways to help people, and posting here is one of them.

Okay, thanks... I looked up the requirements for starting a non-profit on Google and realized what it takes...
Part of the reason I'm thinking about this is because of my dad. When he first started his treatment, he was losing his mind—terrified about having to go to the hospital, being stuck in a room with strangers, hoping he wouldn't have to talk to anyone. But now, after his third round, he’s actually looking forward to it. He tells me it’s a whole new world, a community of people facing the exact same battles. He thinks it would be wonderful if, outside of the hospital walls, people could gather just to talk and share experiences... because every other family we know is dealing with similar struggles. We all know each other, and we know how important this is...
That's why I thought of you. I'm wondering if there's a way to organize something officially so people can volunteer themselves, rather than me having to hunt people down and drag them by the arm...
Maybe we wouldn't go as broad as your organization, but we might try to provide concrete help, like helping people navigate finding doctors...

I don't know, the desire is there, now I just have to figure out what the options are...

Grandpa, Grandma, my mother-in-law, and now Dad with cancer... it's terrifying. It feels like it's just a matter of time before someone else gets diagnosed. People just don't talk about it enough... some even hide that they're sick...

I know exactly what you’re getting at. We started out down that same path, but it didn't take long to realize the whole point of meeting up was evaporating. It just turned into a cycle of constant complaining about the same old grievances without anyone actually lifting a finger to fix them. Eventually, those gatherings just drift aimlessly unless there's a real push to move toward something bigger.
In any case, I truly wish you the best of luck with the funding and resources. Everything carries a price tag—from renting out meeting spaces to providing the specialized coaching you offer—and the current membership dues simply aren't going to cover the overhead.

I need some help here—does anyone know if any spas or medical retreats in the US actually accept patients dealing with cancer?

Well, here I am again... My dad just had surgery to remove a tumor. The doctor says it was a massive 9 cm mass. Interestingly, the other specialist didn't find anything during the follow-up colonoscopy or even when he performed the initial surgery... I'm honestly not sure if that's a good thing or a bad sign. Regardless, the procedure went well, and now we’re just waiting for him to recover. Does anyone have experience with what happens once they get discharged from the hospital? When should we reach out to the oncologist? Also, how long does it typically take to get the pathology results back? And is there any chance this could turn out to be benign?