Resources and support for families dealing with cancer and serious illness

cosmicridge5 said:I’ve been reading through everything here intensely over the last few days... My God, there are so many kind, wonderful people in one single place 🙂 🙂

All of this... until very recently, it felt like some other, imaginary dimension to me...

But now, it looks like it might soon become the only one left.

How do you stay alive when someone incredibly vital is standing right on the edge of that very life?

I want to be a child again. I want to be three years old, sliding down a mountain on my dad's skis. I want him to hold my hands while Mom takes our picture.

I want to retreat into the past so badly that my present moment means absolutely nothing. Right now, it means fucking nothing.

How do you keep living? When do you stop wanting it?
I feel so endlessly sick.
Despite all my healthy organs.

Just give them to him.

And don't bother answering how to stay alive... That was rhetorical. I have no interest in a life like this.

Reading all these threads about cancer and chemo lately, I wanted more than anything to send a message to Zazie.
Then I read that she passed away.
So I spent hours hysterically scrolling through her posts... and looking up the books she had read...
I don't know if or when I'll ever have the will to read again, but if I do, I'll start with the ones she recommended.
Sending you love, Zazie...

And please forgive me for such a dark post; I feel terrible leaving sentences like these here... but right now, nothing else is coming to my fingertips...

Best wishes to everyone.

Honey, you wrote something completely natural—thoughts and feelings that most of us carry in our heads when something like this happens.

I think I once wrote that my biggest realization from this family tragedy was that there is actually no such thing as carefree security in this life. We spend our whole lives constructing some sort of illusion of safety just to make living easier, to protect our children from all evil. And all of that is beautiful and wonderful, but the problem is that people get cradled by that false sense of security, and children are raised in an atmosphere where they believe nothing bad will ever happen (that it happens to someone else). Then, without warning, it hits, and that child is violently ripped out of a crushed eggshell into the raw, brutal reality of life. After plenty of tears, struggling, and pain—after you break so much that you simply can't resist life's facts anymore—it becomes completely and crystal clearly acceptable that we are vulnerable, small, and fragile. And you know what? From that exact moment, you become stronger and stronger, almost with zero fear, because there is nothing left that can shock or hurt you quite like that. There is only the life ahead of you and the fact that nothing is certain or safe, and then you start living life with full lungs, because you aren't burdened; because you simply cannot know. You learn to trust in God's providence and those laws of the universe that are just too vast and unfathomable for our minds. It gets easier. You grow up.

We were lucky that God granted us wonderful moments skiing with Dad and sunny, warm days at the beach with Mom. Human fate is always mortal in the end, but you have to be grateful for everything quality and happy in between, because that's what counts. Some people don't even get half of that, and in the end, they lose every chance to experience even one happy moment with their parents.

Your dad is still here, and he’s going to fight. Don't you dare give up on him now—you might still have plenty of beautiful moments left to share together if you play your cards right. Do everything in your power to make that happen. You owe it to yourself, and you definitely owe it to him.

Hang in there and keep me posted.🙂

Angela Wright said:It’s like being violently ripped out of a crushed eggshell and thrown straight into this raw, brutal reality. After all the tears, the struggle, and the sheer pain—once you finally break and just stop fighting against the facts of life—it becomes completely, crystal clearly acceptable that we are vulnerable, small, and fragile. And you know what? From that exact moment on, you start becoming stronger and stronger, with almost zero fear, because there isn't anything left that can shock or hurt you quite like this.

So that's the idea—the heart is broken, so there's nothing left to break? Honestly, I’m not exactly looking forward to that kind of maturity, or that level of strength, or having zero fear... If that's what counts, then what else is there left for me?

Well...

Thanks for the kind words, everyone... This is all still pretty fresh for me, and I’m not really in a headspace to process things normally right now. I don't want to bring the mood down here.

My mind keeps drifting back to Zazie. I was reading her posts, and they were just enough to lift my spirits, only to find out she passed away... If anyone managed to be strong and rational, if anyone could actually squeeze a few drops of meaning out of these senseless situations, it was her...

The people around me just keep repeating phrases like everything will be okay... It’s indescribably irritating. It makes me want to lock myself in my apartment and just stop talking to anyone. No, things are not going to be okay. And I’m not going to pretend they will. It doesn't help. Right now, it would probably help more if they just stayed quiet instead of talking nonsense. 🙄

And why am I supposed to be strong? What does that even mean? I’m certainly not strong enough for this. Nor would I ever want to be. 🙄

God... I feel like I'm turning into some hysterical, cranky, cynical lunatic.

I'm just so angry and torn apart... it's unbearable.

I feel like I’d trade our God for a pack of cigarettes right about now.

Unfortunately, I’m with you on this one. Phrases like "everything happens for a reason" or "just stay positive" feel completely hollow to me. At some point, you just have to accept the grim reality that things aren't going to be okay—cancer is cancer, plain and simple. There isn't a fairy tale ending here.

My dad is heading in for another biopsy this Wednesday... After a year of peace, the bastard decided to show up again... So, the fight goes on.

I honestly wanted to reach out and say a few words of comfort... but I’m just struggling to find the right ones.
I never blamed anyone, but man, I was just so angry at the whole world. It’s one of those things you just have to ride out, I guess. There were moments where I didn't know whether it was worse to watch my little girl struggle without even knowing why, or to look at the adults who actually understood everything that was happening.
I just really hope you can find the strength to get through this. Try to channel every prayer, every thought, and every good wish toward your family—just to make things a little easier for them.🙂

Amanda Nelson54 said:Unfortunately, I’m with you on this. Phrases like "everything happens for a reason" or "just stay positive" feel pretty hollow to me. I suppose I just have to accept that things might not turn out okay—cancer is cancer, plain and simple. It rarely has a happy ending.

My dad is heading in for a new biopsy this Wednesday... After a year of being clear, the bastard decided to show up again... So, the fight continues, I guess...

Yeah, those kinds of comments, no matter how well-intentioned they are, are incredibly irritating.

Though, honestly, everything seems to be getting on my nerves lately...

It looks like mine already has distant metastases... and we only found out a few days ago that it was actually something serious...

cosmicridge5 said:Yeah, those kinds of comments are just super annoying, even if people mean well.

I guess everything is kind of irritating me right now, though...

It looks like my dad's cancer has already spread... and we only found out a few days ago that things were serious...

cosmicridge5, I don't even know what to say.... My dad went from diagnosis to funeral in less than three months. I don't want to give you false hope or tell you everything will be fine. Because, well, maybe it will, or maybe it won't. You totally get that, and honestly, just knowing that is huge. Like, really huge.

What I can tell you is to soak up every single second you have together. Seriously, make the most of it. I found my strength just by being with him. We used to laugh until we cried, and nobody else in the family really got it. They actually gave me some weird looks, like, "The man is dying and in pain, why are you guys laughing?" But honestly, those last few days together probably brought us closer than all the years before it.

Just laugh, talk, and enjoy the little stuff. You can cry... later. And anger—even though it's totally natural given what you're going through—doesn't really help. Maybe try taking that energy from the anger and putting it into something else? For me, I went totally overboard researching everything. I hit up every bookstore and library in town and spent endless nights scouring the internet. That feeling of helplessness was killing me; doing stuff made me feel like I was actually doing *something* instead of just sitting there with my hands tied.

I guess it's only situations like this that show us how strong we actually are. Though, man, it would be so much better if we never had to find out that way.

Sending so much love to you and your dad. 🙂

cosmicridge5 said:Is that what they mean when they say the heart is broken beyond repair—that there’s simply nothing left to shatter? If that's the case, then I’m certainly not looking forward to reaching that level of "maturity." I don't want that kind of strength, and I sure as hell don't want to live without fear. If that's where the road leads, then what's the point of moving forward at all?

Well...

Thanks for all the kind words, everyone. Honestly, things are still feeling pretty raw for me right now, and I’m not quite in the headspace to engage properly. I don't want to bring the mood down here.

I can't stop thinking about Zazie. I went back and spent some time reading through her old posts, looking for that spark she always had, only to be hit with the crushing realization that she’s gone. If there was anyone here who possessed true grit—anyone who could actually navigate this chaos and manage to scrape together tiny fragments of meaning from such senseless circumstances—it was her.

It feels like everyone around me is just stuck on loop, constantly parroting the same tired catchphrases and empty clichés. Everything's going to be fine.It’s driving me absolutely insane—to the point where I just want to lock myself inside my apartment and cut off the rest of the world entirely. But no, that’s not happening. okI’m not going to pretend that it does. And no, it isn't helping me. Honestly, what would actually help right now is if they just shut up instead of spouting all this nonsense. 🙄

And why exactly would I have to be? Strong.What is that even supposed to mean? Honestly, I don't have the patience for this kind of nonsense. jakaI wouldn't want to be in that position if I were anyone else. 🙄

Good God... I am about to turn into a complete hysterical, screaming, cynical lunatic.

I am absolutely livid and torn apart... it’s becoming unbearable.

Honestly, I feel like I’d sell God right now for a pack of cigarettes. That's where my head is at.

You really think we just rolled over and accepted everything the first time around?
Reading your posts feels like looking in a mirror; it’s like I’m hearing my own thoughts echoed back at me from those first few months after my mom got her diagnosis.
Look, life doesn't work the way we want it to just because we have a specific vision for it. We create these illusions to protect our egos, trying to convince ourselves we actually have some level of control over this world when, in reality, we don't control a single damn thing. When things actually go our way? Consider yourself lucky. You've got no choice but to grab the bull by the horns. If you don't, the resentment will eat you alive from the inside out, creating this toxic, counterproductive atmosphere that helps nobody—especially not your dad. Just let everything mature within you. I’ve walked the exact path you’re standing on right now, and believe me, I wouldn't trade the lessons I learned for anything in the world, no matter how unbelievable that sounds to you at this moment. Just be careful not to swing too far into an extreme. I fell hard into religious fanaticism because I convinced myself I was somehow responsible for my mother's illness. The period leading up to her getting sick was incredibly dark and miserable—honestly, looking back, it feels like a complete nightmare—and there was a moment where I genuinely wanted to die. I was constantly haunted by the thought that God was punishing me, inflicting the same pain on me that I had subconsciously wished upon my mom when I thought about dying.
Life is essentially one continuous gauntlet of challenges and suffering, but that’s exactly how it works. Every single thing you go through is designed to forge you, acting as a catalyst that builds you up both psychologically and spiritually.
Try to wrap your head around the fact that this is about you, your family, and most importantly... Go to hell. Nothing unusual is happening here. This isn't some freak occurrence; millions of people across the globe are already trading in this, and frankly, that number is only going to climb. You aren't some special case or an outlier from the rest of the world. That whole "why me?" mentality you're clinging to? It’s going to flip real quick once you realize the answer is actually, "Why not me?"
I know you're absolutely livid and frustrated right now. Just hang in there—this will pass, and eventually, you'll be able to look back at this whole mess and find the silver lining. Trust me, there are more positive angles to this situation than you can even wrap your head around at the moment. Give yourself some breathing room; everything is still incredibly raw.

I’d really suggest picking up this book:
Robin Norwood
WHY... ANSWERING LIFE'S TOUGHEST QUESTIONS
A friend handed this to me out of nowhere while I was bracing myself for surgery, facing all my fears head-on. Looking back, it felt like God guided it into my hands right before everything hit the fan—specifically, the diagnosis my mom received just two weeks after my operation. The book dives into how we handle being confronted with someone else's illness or death, and explores the idea of healing as something that happens on multiple levels at once.
During this dark stretch I've been going through, I’ve found myself constantly circling back to insights from these pages, often realizing I had reached those exact same conclusions on my own.

Here’s a breakdown of the chapters and what they tackle:

1. Why is this happening to me?
2. What is my body trying to tell me?
3. Am I missing the bigger picture?
4. What is the purpose of pain?
5. Why are my relationships so difficult?
6. Why do I have relatives like these?
7. Where am I headed, and when will I get there?
8. How can I help myself and others heal?

p.s. You can grab it for a ridiculous price of $11

Hang in there, dear. Just remember that the strength we need is already inside us; we just don't always realize it. It surfaces when we least expect it, bubbling up right when we think we're at our weakest.

Amanda Nelson54 said:Unfortunately, I’m with you on this one. Phrases like "it'll all be fine" or "just stay positive" feel totally hollow to me. I have to face the reality that things might not turn out okay—cancer is cancer, period.And it never ends with a happy ending.

My dad is heading in for a new biopsy this Wednesday... After a year of peace, that bastard came back... The fight continues...

😱I'm sorry, but you are dead wrong!
How can you possibly post stuff like that in a space meant for people who are actually fighting?! It’s not just that you aren't helping; you're basically burying people alive before they've even had a chance, and you don't have a single shred of logic or a valid argument to back it up. People fight. They cling to every single scrap of hope they can find with everything they've got. Life itself is a struggle! If you can't wrap your head around that, that’s your issue, and it’s a massive one!
You’ve honestly made me both furious and incredibly sad!😠 Do you push this same nonsense on your own father? You don't even have to say it out loud to him; your negative energy alone is enough to poison the room.
Where on earth do you get the idea that everything always ends badly?! Do you even read the posts from the fighters on here? Have you read about the woman whose husband was given three months to live, yet here he is, healthy as a horse, still messing with us all? He had metastases too. Or have you read the posts from Dandelion? That woman fights like a lioness and is absolutely crushing one of the most vicious, sneaky types of cancer out there.
Please, stop spreading these stupid stereotypes everywhere, especially here. They aren't true, and they shake the faith in recovery that is just as vital to winning the battle as the support from the people around you.

Go check out some of the American Cancer Society's pages and actually educate yourself!

cosmicridge5 said:Yes, those kinds of phrases, regardless of how well-intentioned they might be, are profoundly irritating.

Though, at this particular moment, I find just about everything to be irritating...

It seems my own father already has distant metastases... and we only discovered a few days ago that the situation is actually serious...

Regrettably, no one can truly write or say exactly what you need to hear. Most people struggle to grasp your current thoughts and anxieties because they aren't walking in your shoes, which is why they resort to those hollow platitudes that ring so empty: "It will get better..." My own question, when I found myself in a similar situation to yours, was simply: "What exactly is going to get better? If I knew, perhaps I could actually look forward to it." From the very beginning, until the moment I finally sorted through my own emotions, such remarks threw me completely off balance and were genuinely distressing—I wouldn't even leave my house, quite literally. I am unsure how much that helped, given that my lack of real human contact only allowed the grief to intensify. However, I eventually learned to forgive those who remain silent and simply bypass those who fail to understand...

Try to stay by your father's side at every opportunity and cherish every second spent with him, for you are stronger together in this fight. Attempt to show yourself, him, and everyone around you your true strength. Pity and these empty thoughts won't offer you any actual help, a fact you are already well aware of. Kisses

Listen up, everyone—we’re heading to Congress next week to sit down with our representatives.
In your posts, lay out everything you think is absolutely critical. What should we be grilling them about? What issues need to be shoved right under their noses as our top priorities? I’m hoping we can walk away with at least some real answers or concessions from this.

velvetgull9 said:You’ll cry about it... later.

Wishing you and your dad all the best. 🙂

velvetgull9... 🙂

He strictly forbade everyone from telling me anything... but just 2 or 3 days ago, my grandmother (who is a doctor) told me that Dad is seriously ill, and then after I basically wouldn't let her drop it... she mentioned she suspects distant metastases. She actually shocked me the most; she’s usually such a tough, no-nonsense woman (unlike 😁me), but during this conversation, it felt almost like she had already given up on him—she didn't say it explicitly, of course, but I could just feel it...
Even if she isn't an oncologist...

And of course, I'm not paying for anything or acting hysterical in front of him... we were having dinner the night before last, just joking around and talking about normal things, and if I didn't know any better, I wouldn't have suspected a thing. I mean, he was pretty quiet and tired... and since he's normally such an energetic extrovert 😁, I just figured it was work (he has a pretty high-pressure job and travels constantly) and that he wasn't feeling great... I definitely wouldn't have thought it was something this serious, probably...

He doesn't know that I know. The only thing he mentioned regarding his health was, very casually, that he has to go through a hundred tests and that I guess it's finally time to get them done... I didn't say anything to that, and he immediately moved on to some other topic. Only later, while putting on his coat, did he roll his eyes and say, "Look, bare kidneys... In five years, you'll come to me to buy you new ones. Though I'm not sure I'll be able to."

My parents have been divorced for a long time, and I live at a different address now, but throughout my entire childhood, I was closest to him. Even today, I feel like we're the most alike, like he's the only one who truly "gets" me...
And he means everything to me...
It happened plenty of times, even at my age, where I'd call him in the middle of the night to vent about some childish little crisis. 😁 And he would never give me a hard time about it the next day. 🙏 🙂
I'm just so specifically attached to him... and I honestly can't imagine life without Dad... I mean, damn, who's going to look out for me? As selfish and retarded as that sounds... But in my head, it's always been that no matter what kind of crap happens, if I have to, I'll just call Dad...

God... now, because of this, I feel like a total child.
Something has happened that Dad, it seems, won't be able to fix...

How am I supposed to be strong then???

cosmicridge5 said:How am I supposed to I, then, be strong???

It’s because you were raised by a man like your father, and because you grew up and matured, and frankly, because you don't have any other choice.
🙂

cosmicridge5 said:the only thing he mentioned about being sick was, like, super casually, that he needs to go get like 100 tests done and that maybe now is just the right time to do it... I didn't say anything to him, and then he immediately started talking about something else entirely...

I totally get why you didn't say anything. It’s like, trying to keep up appearances and pretending everything is fine, even if it isn't—just clinging to that feeling. I know, I've been there.

Look, he gave you a sign. Maybe in a few days when you see him, you could ask how those tests went. Just let him know you know. Tell him you guys are stronger together. That he doesn't have to carry this huge weight all by himself. That you're right there for him.

cosmicridge5 said:I'm just so incredibly attached to him... and I honestly can't imagine life without Dad... Like, holy crap, who's gonna look out for me?? As selfish and ridiculous as that sounds... But honestly, in my head, I've always thought that no matter what kind of mess happens, if I really need to, I'll just call Dad...

Oh man... it's making me feel like such a little kid right now.
Something happened that Dad, it seems, won't be able to fix...

How am I supposed to be strong???

I mean, who among us can even imagine life without someone we love? 🙂

You aren't being selfish. You're just trying to find logic in things where there just isn't any. Reading what you wrote, I just see myself back then.

Just take a deep breath and keep moving. Day by day, step by step. The fight isn't over. And you guys are definitely stronger together. 😉

Angela Wright said:Hey everyone, we’re heading down to the state capitol next week to actually talk to our representatives.
Drop all your biggest concerns in your posts—what should we be asking them? What issues do we need to shove right under their noses as our top priorities? I’m really hoping we can get some actual traction on at least a few of these things.

For example, will there ever be a real network of palliative care facilities here in the US for those facing terminal illness? Or maybe even dedicated medical teams that provide actual home care for the sick (I'm not talking about someone swinging by for twenty minutes once a day). That’s what’s weighing on me right now; nothing else is jumping out.
My new ID card finally arrived! 🙂

cosmicridge5 said:velvetgull9... 🙂
My parents have been separated for a while now, and I actually live at a different address myself, but throughout my whole childhood, he was always the one I was closest to.

Trust me, you aren't the only one dealing with this—there are plenty of us here. My situation is just flipped; my mom is sick, and she’s the one I was (and am) close to.
Everyone has already told you that we’re all walking the same path, dealing with the exact same doubts, fears, and realizations. You're going to go through different "phases" of processing this, and eventually, you'll accept it. You don't really have a choice in the matter.
Do yourself a favor and scroll back to the very beginning of this thread; you'll learn a ton from what people have shared.
I actually printed out most of them and keep them at home like a book. Every once in a while, I look back at how someone else reacted, and it helps me realize that I'm going through the exact same things.
The only difference is this "technical" side of the struggle...

At the end of the day, you're the one who stays. And you can't afford to take your own life for granted. You only get this one shot.

brightgardener8 said:For instance, will we ever see a proper network of palliative care facilities for the terminally ill here in America? Or maybe specialized medical teams that actually provide meaningful home care instead of just checking in for twenty minutes once a day? This is a massive issue for me right now, and honestly, it's one of the few things weighing on my mind.
My insurance card finally arrived! 🙂

That’s definitely already at the top of my priority list.👍

Where did all the old-school forum regulars disappear to? Like Dandelion, Blaise, Dina, or Amy Hayes28...???
Maybe they moved over to the association's website... I honestly don't have the bandwidth to keep up with everything lately.

brightgardener8 said:Where did all the 'old guard' users go? Dandelion, Blaise, Dina, Amy Hayes28... where are you guys?
Maybe they're hanging out on some association website... I can't keep up with everything online lately.

I'm still here, keeping an eye on the threads.🙂
Honestly, things just seem to be getting worse and worse.😢
He was sent home from the hospital, and his condition after the radiation hasn't improved at all—if anything, he's physically worse now. We have a follow-up appointment in a month.😂
Since yesterday, he's been in excruciating pain, so we're just waiting to see if the doctors tell us to head back in or stay put.🤷
The truth is, these "new" pains have absolutely crushed him mentally.
I am right on the edge of despair; I feel completely pessimistic about everything.👎
The hardest part is having to look him in the eye and tell him things will get better🙂—that empty, hollow "better"!
Realistically, "better" won't happen until he's gone, once he's finally spared from all this misery.😵
I'm being a total pessimist right now, I know. I’ve sunk into such a dark hole that I can't seem to swim my way out.👎

Love you all, hang in there.🙂

Amy Hayes28 said:I'm here, just reading along.🙂
Things seem to be going downhill, honestly.😢
He was discharged to go home, but there’s been zero improvement after the radiation—if anything, he’s physically worse now. We have a follow-up in a month.😂
Since yesterday, the pain has been absolutely brutal. Now we're just waiting to hear from the hospital whether he needs to head back in or stay put.🤷
Honestly, these "new" pains have just completely broken him mentally.
I am right on the edge of despair; I've lost all optimism.👎
The worst part is having to look him in the eye and tell him things will get better. That hollow, cliché "better" is just insulting.🙂, that fake sense of hope!!!
The only real relief will be when he's gone, finally free from all this suffering.😵
I’m being a total pessimist right now, but I've sunk into such a dark hole I can't see a way out.👎

Love you guys, hang in there.🙂

Did they get him any Durogesic patches for the pain?

Angela Wright said:Folks, we are heading to Congress next week to sit down with our representatives.
Please use your posts to list everything you believe is absolutely vital that we ask them about or highlight as our top priority right now. I am holding out hope that we can achieve at least some progress on these fronts.

It wasn't even the fact that my mother spent an entire chemo cycle—which lasted three days, from 9 AM to 2 PM—sharing a bed with another woman. They were both in the same bed, both undergoing treatment. You honestly wouldn't believe it, but there it was. What truly bothered me more was that not one of those women—and there were ten or fifteen of them in our small local hospital—had seen, let alone spoken to, a psychologist or a psychiatrist. Is that even remotely acceptable? Personally, I would advocate fiercely for access to mental health professionals like psychologists or psychiatrists when facing such heavy diagnoses. It shouldn't just be for the patients themselves, but for the families too, who are equally subjected to intense shock and pressure, often left in total ignorance, gripped by panic, and terrified of death and the great unknown...