Support resources for families dealing with cancer and other serious illnesses

velvetgull9, I know exactly what you're talking about
and you're spot on.
He’s a solid expert, and getting an appointment with someone of his caliber
is usually a nightmare, let alone actually securing
any decent amount of time, but it’s worth a shot.

I also have an alternative in New York City—I'll most likely take the test results
over to the cancer clinic,
and I'm looking into options at Rib as well.
Check your inbox, I sent you a PM a minute ago.

Karen Torres17 said:velvetgull9, I totally get what you're saying
and you're spot on.
He's a great expert, and honestly, it's usually pretty tough
to even get an appointment with someone like him, let alone
get a longer session, but it's worth a shot.

I've got an alternative in New York City—I'll probably just take my results
over to the cancer clinic, and
I'm also looking into Rib.
Check your PM, sent you a message!

Email is better, cats274@gmail.com 😉

velvetgull9, I can't seem to send you a PM,
is that because you're an admin?

In any case, we'll try our best
to get this person to have a normal conversation.

2Karen Torres17 - It’s actually the exact same thing my father went through—except in his case, it was located in the fourth segment of the liver... So, look, as long as the bile ducts are functioning, everything stays relatively stable, but with a disease like this, they have a nasty habit of clogging up, which leads to jaundice and even sepsis! Most likely, they'll need to install a bypass—you know, a drainage system—once the surgery is wrapped up!

As for the actual liver surgery itself, it's considered routine, I suppose, but man, the recovery is brutal. You're dealing with constant fevers and chills, and it takes quite a while to get back on your feet before you can even think about prepping for chemo!

If you need any more details or just want to vent, please feel free to reach out to me—I've been navigating this exact same path for a year now!

thanks Carol Long28, I'll definitely get back to you,
velvetgull9, I'll shoot you an email tomorrow ...

I am absolutely exhausted, I'm heading to bed...

vividbear21 said:Greetings!

What, how, where, when... 😕😲🙂😱

First things first: he doesn't even have a diagnosis yet, and you're already sprinting ahead, worrying about treatment costs and hunting down anyone's horror stories or success tales. Haloooo😳

You don't even know if there's a malignancy at all, let alone what kind it might be. It’s only once the type is identified that doctors can determine the specific drugs and treatment protocols required....sall of this "what if" speculation regarding what might happen, and believe me, based on everything we've seen here, is hands down the worst thing a person can do to themselves—especially when facing dilemmas like this.
Don't get ahead of yourself!
Once the issue is clearly defined, then you can approach it with maturity and logic, doing everything in your power to fix it.
Regardless of the outcome or the questions keeping you up at night, you have to face one brutal truth: we are vulnerable, mortal beings who have very little actual control over our lives. The sooner you accept that, the easier it will be to navigate whatever obstacles life throws your way.
Face things head-on and deal with life's problems as they arrive; live for today, right here. You’ll deal with tomorrow when tomorrow actually becomes "now." There are infinite variables for how any situation could play out, and it is impossible to prepare for all of them. Don't waste your energy on it; it's a complete drain with zero payoff. That is the golden rule when fighting any illness, especially cancer.
Pull yourself together and think rationally about everything.
You're going to be okay.

Karen Torres17 said:The test results are back, and unfortunately, the CT scan regarding the liver basically says this:
-pathological foci, essentially "seedlings," are visible in both the left and right lobes, and there's mention of
some kind of thickening, though it notes the bile ducts aren't dilated.

Nobody actually explained anything to us, other than the fact that the situation is BAD.

The other organs in the abdomen and the lungs look okay. The heart is healthy.

So, what I can say now is that both lobes of the liver are affected.

We’re still waiting on the biopsy results from the intestine and the liver, but even without
those, the diagnosis is pretty much clear.

He was discharged to go home while they wait for the medical board to meet and get back to us... it’s all just
pretty overwhelming.

However, since cases like this aren't really treated at the local hospital near the Cross
because oncology is handled over at Firul, we jumped straight to action—even before that board meeting.
We somehow managed to track down a surgeon from Firul (trying to get the cell number for a surgeon
who seemed to be on vacation felt like an impossible mission, but a mix of sheer persistence,
desperation, being well-informed, and a little bit of luck finally paid off). We ran the
results by him and scheduled surgery for ten days from now.

Naturally, before that happens, we’re going to visit the head oncologist in the city over at Firul
to have him review the findings, suggest a treatment plan, and give us his take on whether the surgery
is absolutely necessary...

In the middle of all this chaos and shock, dealing with vague information and grim prognoses,
something inside us flipped. It turned into a fierce drive to fight, to hunt down info
from every possible source, and to find the most competent doctors available.

I don't truly know what lies ahead for us, but it suddenly became
crystal clear that we can't afford to sit around waiting for anyone. We have to dive in headfirst
and fight tooth and nail for everything modern medicine
can possibly offer right now.

That's all for now. I'll check back in later. Sorry for the long rant; I just needed to
get all of this out of my system.

Hang in there, everyone! Stay strong!!!

I totally understand how you feel and what you're going through.
It was the exact same thing for me, and the results were identical. The doctors weren't giving any good news either.
My dad just got home from the hospital yesterday; he finished his first round of chemo and is holding up well.
Once those liver biopsy results come in, they'll tell you if they're operating on just the colon or the liver too.
Just make sure you stay by his side—that's what matters most. It isn't all doom and gloom.
It was incredibly hard for me at first, but seeing him fight like this makes me so proud.
You two need to fight this together.
And keep the faith.

I can certainly sense the panic and anxiety radiating from your message... especially since your conclusions seem to be based entirely on things you've stumbled upon while searching the internet...

I will simply say that, ultimately, money serves as one of those massive, interconnected links in the chain of anyone's medical journey... it isn't necessarily about having a mountain of cash sitting there from the very beginning, but rather about finding the sheer willpower and the practical ways to push through the treatment until the end...

Back when my mother first fell ill, she was the sole breadwinner, carrying the entire weight of our family on her shoulders... But once that diagnosis hit, everything ground to a halt, and the income just vanished along with it. For a brief period, we were forced to scrape by on my father’s meager Social Security checks, which, quite frankly, barely cover my college expenses even today. We eventually had to make a collective, difficult decision about how to survive this crisis; the only way forward was to take out a loan and put the house on the market, doing whatever it took just to ensure she could get better...

Treatment is always an option, yet nothing truly compares to the sheer resilience and vitality that life itself possesses... Once you receive a definitive diagnosis, you will finally have the clarity needed to assess your actual options with a sense of realism. Do not allow fear to break you or let panic take the driver's seat. As you can see, there are many here who remain fully prepared for the fight, continuing to struggle bravely despite their diagnoses and declining health...

It is quite jarring when life decides to throw such an unpleasant curveball at you, but I suppose that is simply the nature of existence... and yet, one must find the resolve to keep moving forward through every single moment...

Hang in there...

vividbear21 As stated by:
Greetings to you...

Let me start by making one thing very clear: if you happen to be someone with fragile nerves, I suggest you look away now. It might be best to just keep your thoughts positive and skip over my current situation entirely...

My own health is actually perfectly fine... But someone very close to me, the love of my life... My love is currently waiting on test results—scans, really—just seeking some kind of confirmation, an initial diagnosis, to find out if it is bone cancer or not...

I am insignificant... In his presence, I cannot allow myself to show how much I am struggling...

I find myself feeling quite unsettled... truly frightened... I am at a complete loss as to how to help, what steps to take, or even how to provide any semblance of relief... And then there is the question of whether we can actually afford this... though, in my estimation, the issue isn't the act of giving money itself... It's more about whether there will be enough to cover everything if we face the worst-case scenario—which would be a confirmed diagnosis of bone cancer... I have heard far too many stories from others about how devastatingly expensive a cancer diagnosis can be...

What am I supposed to do now? How could this have even happened in the first place...

Official update: They found some spots on my arm bone, so they're sending the samples over to New York City for testing...

And that isn't even the half of it... I was foolish enough to go looking for confirmation on that online chat group... Honestly, they ought to shut those people down entirely... The conversation went something like this: bones are interconnected, bone cancer is incredibly dangerous, it spreads rapidly, and most patients are given only three to four months to live. Apparently, treatment is exorbitantly expensive—running about $7,500 a month at private clinics, which is supposedly the only way to survive—and then there was this doctor who actually offered to donate $2,700 in exchange for sexual services... It was truly horrific... All I wanted was some actual information... Is it really true that patients only have three to four months left to live...

I happened to read online that treatment typically involves a combination of chemotherapy and amputation. In those specific instances where the bone simply cannot be amputated, the protocol shifts toward radiation therapy...

Please forgive the tone of my writing; I am quite simply in a state of total shock, and I have been for two days now...

I need information... and not the kind fueled by empty platitudes and hollow comforts like "it’s going to be okay"... I want the actual facts regarding how dangerous this truly is, whether it spreads rapidly through the bone structure, and if there is any truth to those grim rumors about patients having only three to four months left... I need to know if there is even a chance at recovery, and whether the cost of treatment is so astronomical that an average salary wouldn't even touch the surface of it... If it is confirmed to be bone cancer, I want to know exactly what we are facing... I just want... I don't even know what I'm looking for anymore, but I know I need the truth...

My primary care physician essentially cornered me into a conversation that felt more like an ultimatum than a consultation, suggesting there is an eighty percent probability that we are looking at bone cancer...

What am I supposed to do...

Could someone please provide an answer... I am looking for some actual, concrete advice that might actually be useful...

Once again, I find myself apologizing for such a reaction...

My thanks in advance

Girl, the author of this thread? THANK YOU FOR OPENING IT

The what, the how, the where, the way... 😕😲🙂😱

Thanks so much for all the kind words... but honestly, what can you do? That yellow tint always finds its way back to me. I'm heading in for an abdominal CT scan in two weeks... fingers crossed for my little liver 🙂

Nancy Thomas18 said:Thanks everyone for the support... but honestly, that yellow phase just hits you hard. I've got an abdominal CT scheduled for next week... fingers crossed for my little liver 🙂

I'm so glad you're through the worst of that yellow phase and moving forward!
Sending all the good vibes for next week xxxxxxxxxxxxx👍

Nancy Thomas18 said:Thanks everyone for the kind words... but honestly, what can you do? That "yellow minute" always finds its way to you eventually. I’m heading in for an abdominal CT scan in two weeks... keep your fingers crossed for my poor little liver. 🙂

I'll be keeping my fingers crossed too, 👍 and I know everything is going to turn out okay.
We're all thinking of you.

Nancy Thomas18 said:I really appreciate all the kind words... but honestly, what can you do? That yellow wave just washes over you eventually. I’m heading in for an abdominal CT scan in two weeks... keep your fingers crossed for my little liver 🙂

Fingers crossed! 👍

I haven't checked in for a few days, and honestly, it’s overwhelming how many "new" faces have joined the group lately.
It’s been three weeks of us just constantly running around New York City; first we were over at the Salad clinic seeing an orthopedist, then we had to swing by the vineyard area to pick up some test results, and this Tuesday, we’re heading over to Rib. The goal is to finally get Dad's chemo schedule set, but I'm already terrified they might tell us there aren't any available beds in the hospital.
Over these last three weeks, his condition has visibly taken a turn for the worse. He isn't nearly as mobile as he was before, the pain seems to be hitting him more frequently, and now he's started running fevers, which is one of those symptoms tied to Ewing's.
The CT scan shows that his right pelvic bone is essentially "devastated," and the orthopedist already told us he's going to need surgery. The iliacus muscle on the front side of the pelvis and the gluteal muscles on the back are both affected. What scares me most, though, is that part of the sacrum and the L5 vertebra are involved, and they also mentioned a small 0.8cm focal lesion on the left supraclavicular lymph node, though the cause of that isn't clear yet.
Everything else regarding his organs looks okay for now.
I hit a massive wave of depression today, and I just let myself cry it all out.
Of course, I never do that in front of him. When I'm standing by his side, I'm a rock—just a steady source of information and strength—but the moment I walk through my own front door, I just break down.
I suppose we all have our moments of weakness. Hang in there, everyone!

Nancy Thomas18 said:Thanks for all the support everyone... but honestly, what can you even do? That yellow haze just grabs you and won't let go. I've got an abdominal CT scheduled for next week... keep your fingers crossed for my poor little liver 🙂

You sound way better now. 👍That’s the spirit. Stay strong!... and please, check back in after the CT!

Nancy Thomas18 said:Thank you all for the kind words of support... though honestly, I don't know... those yellow moments always seem to catch up with me. I'm headed in for an abdominal CT scan in two weeks... please keep your fingers crossed for my little liver 🙂

👍

I am so glad to hear that—you sound much better, and I really hope it stays that way.
Keeping my fingers crossed for your results...

We are starting a new cycle here, and we're just hoping that by next week, we might finally hear those magic words: "That's enough! The markers are normal now." If they stay steady after this round, I think we might finally be able to say goodbye to chemotherapy for good...

Do you think this will be making its way over to the States anytime soon?

vividbear21 said:Hey there.

First off, if you’ve got weak nerves, just skip this. Seriously. If you need to stay positive, keep scrolling. My head is a mess right now.

Technically, my own health is fine... But someone close to me, my everything... He's waiting on scans, imaging, some kind of initial diagnosis to see if it's bone cancer or what...

I'm secondary here. In front of him, I can't let myself fall apart. I have to be the strong one.

But I'm terrified. Scared out of my mind. I don't know how to help, what to do, or how to make this easier... And then there's the money. It's not even about having the cash—we could find the money—but is it enough? If the worst happens and this turns out to be bone cancer, will we actually have enough to save him? I've heard stories where cancer just drains everything you have.

What do I even do? How does something like this even happen?

The official word so far: they found spots on the bone in his arm, and the results are being sent to New York City for review...

And that's not even the worst part. I was stupid enough to go looking for answers on some online chatroom... Honestly, those people should be shut down. The conversation went like this: "Bones are interconnected, bone cancer is dangerous, it spreads fast, and patients usually only get 3-4 months." Then they started saying treatment is insanely expensive—like $7,000 a month at private clinics—and that it's the only shot at survival. To top it all off, some creep offered to donate $2,500 in exchange for sexual favors... It was disgusting. I was just looking for info! Is it true? Do people really only have 3-4 months left??????

I read somewhere that treatment involves chemo combos and amputations. And if they can't amputate the bone, they use radiation...

Sorry for dumping this here, I've just been in total shock for two days straight...

I need facts. Not that patronizing stuff where people try to comfort you by saying "it'll be fine." I need the hard truth. How dangerous is this? Does it spread that fast because of how bones are linked? Is that 3-4 month timeline real? Is there actually hope? Can someone on an average salary even afford this? I want to know what we're facing if this is confirmed. I want... I don't even know what I want, I just want the truth.

The GP basically told me, under a lot of pressure, that there's an 80% chance it's bone cancer...

What am I supposed to do???

Can anyone give me actual, concrete advice? Anything important?

Again, sorry for the meltdown.

Thanks in advance.

Girl, thanks for starting this thread. REALLY.

Everything is just... what, how, where, why... 😕😲🙂😱

The uncertainty is brutal, but please, hold onto hope. Be brave, regardless of what those results say. This isn't the end of the world. There is always tomorrow, and there is always a fight for tomorrow. You can't think too far ahead right now; it's just about fighting for the next twenty-four hours. One day at a time. Miracles happen, they really do. And remember: in medicine, two plus two doesn't always equal four.

Hey there to all the old friends and newcomers (man, there are so many of you)😢 fighting the good fight!

My mom is completely immobile now; she’s mostly silent, though she does occasionally express an interest in eating something, which is honestly a huge win. Since she first went bedridden, there was a period where she just refused all food, and we were basically praying for every single drop of water we could get into her mouth. Naturally, that took a massive toll on her overall health, and she ended up developing pressure sores. Even with the nurse checking in and us constantly monitoring her and applying ointment to the sensitive spots, man, it’s tough. This one caught us totally off guard—it just opened up out of nowhere. When we’re repositioning her, that side is always turned away from us, so it’s hard to see, tucked away slightly underneath, and we just didn't catch it in time, but that's the reality of it.
A few days ago, I noticed this little blister, leaking a bit, and I honestly thought it was just irritation from the diapers. I tried spraying it with Bivacyn, but after two days, it was still oozing and wasn't healing at all. That’s when it hit me that something was actually wrong. At least now I know what a pressure ulcer actually looks like.🙄

Using kantarionov oil worked almost overnight, though I eventually decided to go with a Granuflex patch. Honestly, a lot of that was just my own panic setting in, because I was legitimately terrified. Moving forward, I’m going to try using kantarion and calendula ointment to prevent any more skin from breaking, and I'll be switching her positions more frequently, but things should improve once she starts getting some actual solid food in her. And I suppose I’ll need to pull myself together too. 🙄

I’ve also got Sudocrem and Dermazin on hand, plus plenty of baby diaper creams since she’s been in diapers full-time. The nurse suggested I pick up some half-liter bottles of saline solution for rinsing. I think I’m pretty much fully equipped now.😁

We’re back on the native propolis again, so I’m attributing the slight improvement in her appetite to that.

Oh, and we finally sorted out the hair washing situation—well, "sorted" might be a stretch, but the nurse and I reached an agreement. Still, I’d love to dye it for her again. 😛 She always cared so much about her hair. I realize it doesn't matter much right now and she probably won't even notice, but it feels important regardless.
I still need to come up with a bit of a strategy for that.😁

Melissa Kim45 said:Hey there, old-timers and newcomers alike (man, there are a ton of you) 😢warriors!

My mom is completely immobile now. She’s mostly quiet, though she does try to ask for food occasionally, which is honestly a win. Since she’s been stuck in bed, there was a period where she just refused to eat anything, and we were basically begging for any drop of water we could get into her mouth. Naturally, that took a massive toll on her overall health, and now she's dealing with pressure sores.

But when was this supposed to happen?! 😱 Are you guys using one of those specialized anti-bedsore mattresses?

I’ve actually been thinking about how to give my mom a haircut lately... 🙄 Back when she was living at home, I used to do it myself with clippers, but since she moved into the care facility, we haven't been able to cut her hair in months.
As for that hair coloring stuff—do you really think it's necessary? 🤷
You have to rinse all those chemicals out of the hair thoroughly, and we all know how difficult that becomes when someone can't move.

It’s a good sign that Mom is willing to eat. 👍 Man, I would give anything if mine hadn't completely stopped...

brightgardener8 said:So, when is it actually going to happen? 😱 Does anyone happen to have that anti-decubitus mattress lying around?

I’ve actually been sitting here lately just mulling over the whole idea of giving my mom a haircut myself... 🙄 When she was still back home, I used to handle all her hair with the clippers myself, but now that she’s moved into the care facility, we haven't even been able to get her a haircut in months.
I’m really not sure about all that coloring business; you honestly think it’s actually necessary? 🤷
You really have to make sure those chemicals get thoroughly rinsed out of your hair, though I know exactly how difficult that whole process becomes when someone isn't able to move around on their own.

It’s a good thing Mom actually has an appetite and wants to eat. 👍 Man, I would give just about anything if only my girl would stop...

Suddenly. 😢
I’m pretty convinced that besides the mobility issues, this mostly comes down to her refusing to eat. That Vindijin pudding was absolute perfection when she actually managed to get a couple of spoonfuls down.
I honestly didn't realize things would move this fast. You want to know what it actually looked like? It was exactly like when a shoe gives you a blister so bad that the stench follows you all the way home, leaving you in tears by the time you finally get to the doctor to have it dealt with—just a little bit of peeled skin, really. I wasn't expecting it at all, despite being careful, and I genuinely thought it was just from the diaper. I figured she’d either chafed herself or maybe while her caregiver was changing her, some kind of sticky residue got stuck to her, and when they tried to wipe it away, they accidentally took a layer of skin with it. It wasn't until the leaking wouldn't stop that I actually started to panic. About an hour ago, I finally got her settled on the bed, tidied everything up, tucked a rolled towel under each arm, kept her elbows up, and propped her legs up using a rolled blanket and a pillow so her heels are slightly elevated off the mattress.😁
She’s finally drifted off to sleep, though I noticed she spit up a little bit earlier, so I’ll probably have to roll her onto her side in a couple of hours. There’s just no way she can manage that on her own. I'll have to adjust her position again early tomorrow morning, and then around seven-thirty, it’s the whole routine: wash her, massage her, rub her down, apply ointments—especially everywhere that looked like it had a strange color—change her diaper, and then head into work to try and get a little bit of a breather.😁
Looks like I'm flying solo again tomorrow without my sister around.
We haven't picked up that mattress yet, so we'll just have to see how it goes. For the time being, things seem to be moving along alright, as well as can be expected. I’m not letting her spend the entire day stuck in bed, though; I won't allow it. In the mornings, we usually just move her over to the armchair or catch a taxi to get her somewhere else.😁 So, it’s just one thing after another with the positioning—sometimes there’s a little extra cushion under my backside, sometimes there isn't, and then we'll have my legs propped up on the stool, or maybe they aren't, depending on how things are feeling. We’re even lifting my elbows with these little pads. Then comes the evening, and it's back to the bedside, and honestly, it's just that whole cycle again; we go through the entire day only to find ourselves right back at the beginning.

It doesn’t necessarily have to be about dyeing it; someone actually asked me if that was even an option. I honestly don't know, I mean, I know you’d need to rinse it out thoroughly afterward, but that’s just not going to be feasible while we're stuck in bed, and since there isn't really any other way to handle it, I’ll just have to figure something else out. It’s really more about my own desire to see her looking the way she always made sure to look. I do have an alternative, though, which would be to just cut it short, because she actually looked quite striking when her hair was still very short and gray right after she finished her chemotherapy treatments. We all absolutely loved that "look," but she never much cared for it herself.
I don't really know. I guess there’s just this part of me that wishes, when my mom eventually passes, she could somehow still be that same mom I’ve always known. Even if it was just on the surface, you know? Just to have her look like herself again. 😢 And honestly, who even knows what else is coming our way? I’m not going to push myself or try to force any kind of outlook, nor am I going to sit around daydreaming about things, because that just drains my energy on stuff that, when you really think about it, doesn't even exist.
🤷