Resources and support for families dealing with cancer and serious illness

Does anyone here have any firsthand experience with—or perhaps deal with—epidermolysis bullosa?
Do you guys know anything at all about this condition?
I’m actually living with it myself, which is why I'm asking.

Nathan Bailey said:Hey everyone!

Has anyone been to Mayo Clinic since they did that "restructuring" in oncology? We need to go in for a follow-up, but we have no clue which doctor we'll see—they didn't mention anything when we booked the appointment. Does anyone know who handles brain tumors now, and is this whole new departmental split actually final despite all the patient complaints? Thanks.

Honestly, it's a total mess at Mayo right now. I’ve got my own oncology check-up coming up in about 20 days, and I just found out I can't even see the same doctor I've been seeing for four years. I've reached out to a few others in the same boat and even posted about it here before, but nothing changes. It feels like we're all just shouting into the void—everyone's frustrated, but nobody is listening. The head of oncology couldn't care less about us; he's pushing these new divisions that don't make sense for patients or doctors—unless, of course, it suits him and a tiny handful of others. There’s talk about getting some media attention involved, but we’re still waiting for a group of influential people to step up and actually do something. For the rest of us, we're stuck waiting and hoping they'll let us see the doctors we actually trust—the ones we finally felt comfortable with after all the stress. Hang in there, everyone.👍

shadowheron4 said:Things at Mayo Clinic are a total mess right now. I’ve got my follow-up with my oncologist coming up in about three weeks, but I just found out I won't be allowed to see the doctor I've been seeing for four years. I've reached out to others dealing with this exact same thing and even posted about it here, but nothing changes. We're all protesting and making noise together, but nobody is actually listening to us. The head of oncology couldn't care less about our well-being; he's just carving out these new divisions that serve no one—not the patients and certainly not the doctors—except maybe himself and a small circle of cronies. There's talk of taking this to the news, but we're just waiting for a group of influential people to step up and actually make an impact. For the rest of us, we're stuck waiting and praying they'll let us see the physician we actually trust—the one we finally felt comfortable with after all our struggles. Best wishes to everyone.👍

God, I am counting down the days until our association is officially registered. Once that happens, we'll have the legal standing to go public, demand answers, and call them out directly. Until that paperwork clears, we're basically just spinning our wheels and biting our nails.😠

Angela Wright said:I am eagerly anticipating the moment our association officially completes its registration... only then will we possess the legal standing to pose this question publicly and hold them accountable for their actions. Until that paperwork is finalized, I suppose we are left with nothing more than pacing in circles and biting our nails...😠

It will pass... I am absolutely certain of it. We shall exert every ounce of our collective strength to ensure its success. Rest assured, we are standing right here beside you...

Hey, I hope things went smoothly with the association. Give us some details when you can... My dad was just written off by mainstream doctors five days ago because he can't handle chemo anymore, and the metastases have spread to his lungs... We're going to try B17 injections along with some other supplements—it's a therapy they use down in Mexico... We'll see how it goes; we actually heard about it from some people at the hospital in Chicago who use it.
Sending you all nothing but strength to hang in there and win this fight!

Laura Kelly91 said:Hey, I hope everything went smoothly with the association. Please share some details about how it turned out... Five days ago, my dad's doctors basically gave up on him because he can't handle chemo anymore, and the metastases have spread to his lungs... We're going to try B17 injections along with some other supplements—it's a therapy they use over in Mexico... We'll see; we found out about it from some folks at the hospital in Chicago who actually use it.
I'm sending you all all my strength to hang in there and win this fight!

We're still playing the waiting game. We pulled a few strings to see if we could speed things up, but we won't know for sure until next week. Usually, the whole process takes about 30 days.

I'm just sitting here crossing my fingers that this whole thing wraps up as soon as possible!🙂

Angela Wright said:Man, I am seriously counting down the days until our association is officially registered. Once that's done, we can finally step up, ask the hard questions publicly, and actually hold them accountable. Until then—well, we’re basically just spinning our wheels and biting our nails.😠

It’s gotta happen—fingers crossed!👍

Angela Wright said:We're still waiting. We actually pulled a few strings to see if we could speed things up, so let's see what happens next week. Normally, the standard procedure takes about 30 days.

Look, if the law says 30 days, then in our lovely American bureaucracy, you can bet it'll be double that. And when you factor in Christmas, New Year's Day, and Three Kings... (aka: everyone's out skiing), the only way this actually sticks to 30 days is if someone pulls some serious favors. Fingers crossed we get some movement soon!

brightgardener8 said:If the law specifies thirty days, then within our beloved American bureaucracy, we should realistically expect double that... And once you factor in the holiday season—Christmas, New Year's Day, the Three Kings... which basically translates to everyone being out on vacation... the only way this actually happens in thirty days is if you have some serious political connections. I’m holding out hope it arrives sooner, though...

An optimistic perspective: it will be resolved within the timeframe, if not sooner, simply because it is in everyone's best interest... kisses

Legally speaking, you’ve got a 30-day window to get an association registered, which means you really _have to_ wrap up the whole procedure within that timeframe. If the relevant government agency fails to meet that deadline, the law essentially considers the organization officially formed by default. Of course, if they conduct an audit and find any errors in your paperwork, the clock resets entirely, so _theoretically_ the whole thing could stretch on for more than two months; however, if the bylaws, meeting minutes, and formal decisions were drafted by someone who actually knows what they're doing and has experience with this stuff, there shouldn't be any issues at all.

As someone who holds a law degree and has been actively involved in launching several nonprofits during my relatively short career, my best advice is to handle the registration outside of Washington, D.C. The clerks in smaller areas tend to be much friendlier, they aren't as overwhelmed with paperwork, and they actually have the time to walk you through any hiccups you might encounter—plus, the whole process can be finished in just a day or two. At the end of the day, it doesn't matter whether you file in San Jose, Ann Arbor, Columbus, or Washington, D.C.; the legal standing is exactly the same.

Elizabeth Gonzalez55 said:The legal deadline to register an association is 30 days. This means you *must* wrap up the whole procedure within that window. If the relevant agency fails to meet the deadline, the law dictates that the association is considered established by default. Of course, if an audit reveals any errors in the paperwork, the clock resets. So, *theoretically*, the whole thing could drag on for over two months, but if the bylaws, minutes, and resolutions were drafted by someone who actually knows what they're doing and has experience with this, there shouldn't be any issues.

My advice—and I’m a lawyer who has been actively involved in setting up several nonprofits during my short career—is to handle the registration outside of Washington, D.C. The clerks in smaller areas are much friendlier, have lighter workloads, and actually take the time to help you fix things that might not be quite right. You can get everything finalized in a day or two. At the end of the day, it doesn't matter if you register in San Jose, Ann Arbor, Columbus, or Washington, D.C.

Man, thanks so much for all this info! Regarding the bylaws, we drafted them using templates provided on the websites of some similar organizations. I think they turned out great, along with the meeting minutes.👍 Since we've already submitted the paperwork, we just have to sit tight and wait. If things hit a snag, Springfield isn't exactly far from us.😉

Laura Kelly91 said:Hey, I hope everything went smoothly with the association. Maybe share some details about how it went... My dad was basically written off by mainstream doctors five days ago because he just can't handle the chemo anymore, and the metastases have spread to his lungs... We're going to try B17 injections along with some other supplements, a therapy they use down in Mexico... We'll see, we heard about it from people at the hospital in Springfield who actually use it.
Sending you all my strength so you can hang in there and win this fight!

Right back at you and your dad. 🙂

My mom has an appointment tomorrow and I honestly have no clue what’s going to happen or how we'll cope if they decide she needs more chemo. She’s a complete wreck right now and I really don't know when she's going to hit her limit (for instance, how she manages to ruin every single weekend, truly every one), but then today she's fine again, and then suddenly she isn't. Of course. When she says "my stomach hurts," it actually hurts, but then there are those moments where "I'm going to throw up right here" is the reality.🙄
She's got diarrhea (which always happens whenever I'm out of the house) and she's mentioning having white stools.
😕
Who knows how many little pills she's been popping.😁
Every single time she has to go to the hospital—whether it's a checkup or chemo—she becomes impossible to deal with.
Just when I think she's finally coming back to herself, it all resets to zero.🙄

Hey everyone,

So, I recently stumbled upon this super interesting read about alternative cancer treatments. It’s all about this product called Protocel that supposedly lowers the voltage within your body's cells.
The whole thing is 29 pages long. I'll paste a shorter snippet (the basics) here along with a link:
If anyone wants the full deep dive, just shoot me a private message with your email and I'll send it over...
http://alternativecancer.us/cancell.htm

"To put it simply, here is how Protocel works: when someone takes Protocel consistently every single day, the formula slightly drops the biochemical voltage of every cell in the body. (Actually, for the tech-savvy folks out there, the more accurate term would be 'capacity,' but most people just get what 'voltage' means.) This results in a voltage reduction of about 10 to 15 percent. Protocel pulls this off by interfering with ATP (adenosine triphosphate) production. Since anaerobic cells generate energy through glucose fermentation—basically 'glycolysis'—instead of oxidation like normal cells do, they run on minimal energy and maintain a lower voltage than healthy cells. That tiny drop in voltage caused by Protocel pushes tumor cells down below the absolute minimum threshold they need to stay intact. Once that happens, the cancer cells (just like any other anaerobic cells in the body) break apart or 'lyse' into harmless protein. In other words, they can't hold themselves together anymore and they just... fall apart! On the flip side, normal, healthy cells maintain such a high level of voltage that the slight dip from Protocel doesn't even touch them. That's why Protocel is lethal to carcinoma cells but totally safe for the rest of your body."

🙂 🙂

Melissa Kim45 said:She’s dealing with diarrhea—which always seems to happen whenever I'm not around—and she mentioned having white stools.
😕
Who knows how many pills she has actually managed to swallow?😁
Before every single hospital visit—whether it's an exam or chemo—she becomes absolutely impossible.
Just when I feel like I finally have her back to herself, everything resets to zero.🙄

White stools and dark urine could be signs that the liver isn't functioning properly... you must mention this to the doctor at the next checkup, so we can prevent total failure.

Stay strong—don't let this break you. I am with you with all my heart and soul. 🙂

northernfox9 said:🙂 🙂

Pale stools and dark urine can be signs that the liver isn't functioning properly... you really ought to mention that to the doctor at the next checkup so things don't spiral into full-blown failure.

Just stay strong, hang in there. My heart and soul are with you. 🙂

Thank you for telling me that, and for the support. 🙂

I definitely need to get that checked out. I have to take a close look myself because, honestly, it's hard to fully trust what she's saying. She’s just so frail, and I can see she's already getting worked up because she has to head back to the hospital in two days. Even if she gets to come home the same day, she’s completely exhausted. I think she’ll make a decision about how to proceed with treatment soon, but it feels to me like she desperately needs a break. She's constantly feeling sick, vomiting, complaining about "stomach pain," and I am just absolutely at my wit's end. I haven't even been paying attention to how I look or what kind of impression I'm making on people lately; I'm just trying to maintain some sort of facade of normalcy, though I think I'm mostly just lying to myself since I know I've lost all self-control.
I dread confrontational situations and difficult people, especially when it comes to work.
I suppose I'm just afraid of the consequences.😁

And now she's nagging me again about those little shoes—whether she wants these ones or not, pushing the ones I specifically told her not to use. It's a thousand little things I wouldn't have even dreamed could be an issue.

The mood swings are terrifying; sometimes I worry she won't bounce back from one crisis. When things are better, I tend to push it out of my mind. One doctor (not her regular guy over in Jordan, I won't get into which one, let's just call him the "doctor on duty") actually told me he wouldn't want to be treated like this, that he'd rather not have his girlfriend cleaning him up in diapers, because otherwise, I'd find her dead in a single day.
I can't get those words out of my head.👎

Melissa Kim45 said:Thanks for telling me that. And thanks for the support. 🙂

I absolutely have to get this under control. I need to look into things myself because it's getting hard to trust anything she says. She’s incredibly fragile right now, and I can see how frayed her nerves are since she has to head back to the hospital in two days. Even if she gets discharged the same day, she’s completely wiped out. I think she’ll be making calls about her next steps for treatment soon, but honestly, it looks like she desperately needs a break. She’s constantly feeling sick, vomiting, complaining about "stomach pains," and I am just at my absolute breaking point. I haven't even checked how I look or how I'm coming across to others for a long time; I’m just trying to maintain some semblance of normalcy. It feels more like I'm lying to myself than anyone else, because I know I’ve lost all self-control.
I dread confrontational situations and difficult people, especially at work.
I guess... I'm afraid of the consequences.😁

She’s nitpicking me again about those little bottle caps—whether she wants these ones or not, pushing the ones I specifically told her not to push. A thousand tiny things that I wouldn't have ever dreamed could become such massive problems.

The ups and downs are terrifying. Sometimes I'm scared she won't bounce back from a single crisis. When things improve, I tend to let my guard down and forget. One doctor (not her regular guy over in Jordan, I don't want to get into which specific clinic, just a "doctor on duty") actually told me straight up that he wouldn't undergo that kind of treatment—that he'd rather not have his partner cleaning him in diapers, because he said I'd find her dead one day.
I can't get those words out of my head.👎

Just clear all that noise from your mind and tackle things one step at a time the best way you can. You aren't a saint capable of performing miracles, nor are you God, capable of altering people or the course of fate. It is what it is. I know that isn't much comfort, but believe me, you will adapt to everything—even the things that seem most unbearable right now. So don't be afraid; instead, lean into that version of yourself you haven't even fully met yet.

Angela Wright said:Just clear all that noise out of your head and tackle things one by one the best way you know how. You aren't some saint capable of working miracles, and you certainly aren't God, so you can't just go around changing people or the course of fate. What happened, happened, and while I know that’s not exactly a warm hug, you’ll adapt to everything—even the stuff that feels like the absolute worst right now, trust me. So don't be afraid; instead, just lean into that version of yourself you haven't even fully met yet.

🙂

Yeah, it is a comfort. Well, maybe it isn't, but it kind of is. There are moments when I feel like I am losing my mind completely, and I can't talk to anyone because they're bored with it, or they don't remember, or they just don't care, or it's all too much work for them.
Honestly, I really have no idea how anyone manages to tolerate being around me.🙏 🙏

My cycle is a total mess right now. My doctor says it's because of the stress.

I'm trying my best not to whine about it. I really am, but sometimes I just end up being such a crybaby.

Thanks, ladies. 🙂

Melissa Kim45 said:🙂

It offers a certain level of solace... though perhaps "solace" is too generous a term. There are moments when I feel utterly unhinged, reaching a point where conversation feels impossible because people simply grow weary... they lose interest, or perhaps they just lack the capacity to care, which makes everything feel so much more exhausting.
Truly, I find myself wondering how anyone manages to tolerate my presence at all.🙏 🙏

My cycle has become completely irregular. My doctor attributes it entirely to stress.

I am attempting to refrain from complaining. I really am, yet there are times when I succumb to being somewhat... sensitive.

Thank you, ladies. 🙂

No matter how harmless the stress might seem—unfortunately—one must remain vigilant. I haven't gone to check if my stress levels have triggered issues like diabetes, but most importantly, my father is finally doing well. He has recovered from everything, and we all feel a profound sense of relief.

At least here, no one will judge you for being a bit sensitive, because... well, we are here to offer support and advice. Hang in there! kisses

Melissa Kim45 said:🙂

My cycle is a complete mess right now. My doctor claims it’s just stress.

Luckily, I was seeing Yasmina, so everything worked out, even though I ended up with CIN1 out of nowhere—but it’s all fine now, all my tests came back clean.🤷
Don't forget to carve out at least half an hour every single day just for yourself. No matter how selfish that feels, it isn't; it's vital. Take care of your health, and make sure you're looking after yourself just as much as we look after our sick loved ones.👍