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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 335 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#2081 ·
Grace Campbell88 said:Mine passed away about two or three weeks after the diagnosis. And get this—he didn't have a single symptom even a month before.

😲

In my dad's case, it was two years from his throat cancer diagnosis, then another year and three months until the lung cancer hit. He had absolutely zero symptoms for the lung issues; they actually caught the carcinoma while they were just checking to see if the throat tumor had returned after surgery. I am still absolutely livid because they sent him home from the Jordanovac clinic right after finding the tumor and just prescribed antibiotics! Then, a few months later at a follow-up, they realize it really was a tumor, but by then it had already spread and wasn't operable anymore. 😢 I mean, since he had no symptoms, I get why people sometimes pass away so quickly after a diagnosis, though... two or three weeks is just plain horrific.

Reading everything that's happening here, I've reached a point where I just feel grateful that we at least had enough time to say goodbye... even though I'm going to miss him for as long as I live. :sad:
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#2082 ·
Amanda Anderson87;30976125Yes said:

I know, dear, I really do... I felt like half of me left with him. I literally couldn't handle being alone with myself. I cried every single day for months, constantly waiting to wake up and find everything back to the way it used to be.
I'm doing better now. Not great, but better. I hope you feel that same shift soon too.

Honestly, I don't think time heals all wounds... you just learn how to live with the ache. Hang in there! 👍
Ronald Rivera5 Ronald Rivera5 Member
11 messages
joined Mar 2011
#2083 ·
I honestly think finding some kind of other "distraction"—if that's even the right word—is pretty vital. For me, I was lucky enough to get pregnant three months after my dad passed away, and ever since then, I haven't been stuck in that loop of crying every single day like I was during those first three months.
Obviously, a person has to grieve and go through the motions for a while, but I genuinely thought I’d be weeping every day for the rest of my life. And let's be real, that definitely isn't healthy.
Justin Fox7 Justin Fox7 Newcomer
2 messages
joined Jun 2012
#2084 ·
Hey everyone...
So, my mom told me last Friday that he’s been diagnosed with colon cancer. He’s 73.
Anyone here dealt with elderly folks, maybe 70 plus, who are dealing with health issues? Looking for some insight. Thanks. 😢
Ronald Rivera5 Ronald Rivera5 Member
11 messages
joined Mar 2011
#2085 ·
Michelle Fowler38 said:Hey everyone..
My dad was just diagnosed with colon cancer last Friday.. he's 73..
Does anyone have experience dealing with older patients, say 70 and up?? Thanks 😢

Well, look, my old man went through this too and passed at 72... but there aren't really any rules to follow here...
Justin Fox7 Justin Fox7 Newcomer
2 messages
joined Jun 2012
#2086 ·
Grace Campbell88 said:Look, my dad got sick and passed away at 72... but there aren't really any hard and fast rules here...

Yeah, I know there aren't rules. I'm just trying to hear about people's experiences—how it usually plays out with older folks. I've heard that cancer tends to develop way slower in older people...🤷
Anthony Garcia19 Anthony Garcia19 Active Member
116 messages
joined Aug 2012
#2087 ·
Michelle Fowler38,

It all really comes down to when the cancer is caught. Usually, this type of cancer develops pretty slowly, often starting as polyps that gradually turn from benign growths into something malignant—it's a long process. What you heard is right, too—it tends to move slower in older folks, but that doesn't mean much if someone waits too long to see a doctor.

The priority right now is getting your grandfather in for all his tests as soon as possible. They need to see if the carcinoma has broken through the intestinal wall or spread to other parts of the body. After that, just stay brave and fight. The most important thing is not losing heart.

My mom, unfortunately, didn't catch it in time. It was a perfect storm of bad timing—she was so busy taking care of her dying grandfather that she neglected her own health. By the time the symptoms really kicked in, she had already accepted the idea that it was too late, and she made the choice not to seek treatment. She kept the truth from us for a long time, but we eventually started suspecting something was wrong because she was so weak—loss of appetite, severe anemia, that kind of thing. No matter how much we pleaded or worried, we couldn't convince her to get checked out. One day she just said: "Why bother going? So they can tell me what I already know?" My blood ran cold right then. I realized she’d known for a while, but she didn't want to burden us, and knowing her, she truly believed it was too late. Two weeks later, she wasn't able to live independently anymore, and that's when she finally had to see a doctor. She passed away exactly one month after that first appointment, and a part of me went with her.

I wish things had been different—that she hadn't hidden the truth and had fought it. But she was a special person, strong and selfless, always more comfortable giving than receiving. She carried her struggles internally, always with a smile, never wanting to be a burden to anyone...

It still hurts that she wouldn't let us help carry her load. I find myself looking for my own mistakes, wondering where I failed or why she thought I was too weak to handle it... Reading this thread, I realize I was spared the heavy burdens and sacrifices that Angela Wright and many others here have faced while caring for loved ones for months or even years. But I don't think I'll ever find peace with it, because she left so alone, even though we loved her so much...

Sorry if I'm overwhelming you with my story (and everyone else's too), I just got carried away... I don't know how old you are, but right now, it’s so important to spend as much time with your grandfather as possible. Talk about everything, including his illness, if he's up for it. He needs support, and this is your chance to get close to him and do something beautiful. Don't miss it!

Good luck!
Sean Ross8 Sean Ross8 Newcomer
4 messages
joined May 2012
#2088 ·
Hello everyone,

Due to the most heartbreaking circumstances imaginable, I find myself left with enough Temodal for two more cycles that we were paying for out of our own pockets. If anyone else is currently navigating the burden of self-funding their treatment and might be interested, would you please reach out to me via private message? Since it is virtually impossible to source this through local pharmacies on such short notice, I had been importing it from abroad to ensure we stayed on track.
Anthony Richardson87 Anthony Richardson87 Newcomer
1 message
joined Jan 2011
#2089 ·
Sorry, this just grabbed my attention: link
Ronald Rivera5 Ronald Rivera5 Member
11 messages
joined Mar 2011
#2090 ·
Michelle Fowler38 said:I mean, I know there aren't any actual rules here... I’m just curious about what people have actually seen. How does it play out with older folks? Because I keep hearing that cancer tends to develop way slower in older people.🤷


Dammit. My dad started showing symptoms around May, got his diagnosis in June, and was gone by July.
They told me the first phase was moving at a snail's pace, you know? Just dragging along. But then everything shifted—it hit that second stage, that galloping phase, and it just absolutely tore through the body. Literally ravaged it.
There aren't any rules here, and honestly, you have no idea what you're actually getting into.
Dana Wilson33 Dana Wilson33 Newcomer
9 messages
joined Sep 2012
#2091 ·
Dana Wilson33 said:Thanks for saying that. I might have gotten my dates mixed up—maybe the results won't actually be in until January 10th. Everything is just a complete blur right now. She was crying today while she was talking to this lady about it... it’s just devastating.
I think she’s heading back to the hospital on the 11th. Honestly, her only real focus right now is figuring out what to do about her sister's kids—her grandkids. I can't look after them, and when she told me that if necessary, she’d just take them with her to the hospital... I wanted to scream. It was infuriating. She is constantly worrying about her children instead of focusing on her own health. That’s exactly why things reached this breaking point in the first place; her daughter couldn't care less about any of this. She just shows up when there's a warm meal ready and the house is clean. Meanwhile, Mom does nothing but fret over those kids. 😢

Just wanted to let you all know that Mom is doing okay. They didn't find anything during her exam. Thank God. I really appreciate all the kind words and support you've sent my way. It’s a massive weight off my shoulders.
At least we're finally seeing some decent news on this thread.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2092 ·
Dana Wilson33 said:Just wanted to let you guys know Mom is doing okay. They didn't find anything at the checkup. Thank God. Thanks everyone for the kind words, it really took a weight off my shoulders.
At least we finally have some good news in this thread.

I hope Mom and all of you take this as a lesson in actually listening to your body. Maybe it's time for her to focus a bit more on herself and what she actually needs.
The second lesson? Don't ever go running headfirst into a wall or stressing out over things when you don't have the full picture yet. You deal with an obstacle only when you actually hit it.
That’s the secret to a long, healthy life!
Dana Wilson33 Dana Wilson33 Newcomer
9 messages
joined Sep 2012
#2093 ·
Angela Wright said:I hope this mom—and all of you reading this—takes a lesson in listening to your own body. It’s time she starts prioritizing herself and her own needs for once.
The other lesson? Don't go running headfirst into things you aren't ready for. Stop stressing over stuff when you don't have all the facts. You deal with an obstacle when you actually hit it, not before.
That’s the secret to a long, healthy life.

I really appreciate those words.
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#2094 ·
We will be hosting a meeting for those living with rare tumors and their families at our new location on January 21, 2010, starting at 6:00 PM. The meeting will take place at the Peščenica Health Center, located at 38 Ivanićgradski St.

The meeting is being organized by our partner, the American Association for Rare Diseases. Our primary goal is to bring together everyone affected by rare diseases.

The focus of this gathering will be on coordinating joint initiatives for Rare Disease Day, which is being observed across four major cities: New York City, Miami, Seattle, and Indianapolis. Crucially, we are working on drafting a proposal for the National Rare Disease Plan. We have to fight to ensure that the measures most vital to patients are actually included. I intend to highlight several issues specifically critical to rare tumors: faster diagnostic timelines, improved access to cutting-edge targeted therapies, and participation in clinical trials.

It is vital that you show up. Because let’s face it—if patients don't speak up about these struggles, the healthcare system simply acts as if the problems don't exist.

In the United States, rare diseases are generally defined as those affecting fewer than five individuals per 10,000 citizens. Globally, there are between 5,000 and 7,000 known rare diseases; while each individual condition affects few people, their cumulative impact hits roughly 20 million people across America. However, pinpointing an exact number of sufferers is difficult, largely because many rare conditions are lumped under the broad umbrella of "metabolic and endocrine disorders," and epidemiological data for many of these conditions remains woefully inadequate. Rare tumors account for 30% of all rare diseases, and like other rare conditions, they share a common set of obstacles:
-The inability to secure an accurate diagnosis
-A chronic lack of information
-A deficit in scientific knowledge and research
-Severe social consequences
-A lack of appropriate, high-quality medical care
-Prohibitive costs for the few available medications and therapies
-Gaps in the accessibility of treatment and care—innovative therapies are often distributed unevenly across the country due to delays in pricing negotiations, insurance reimbursement decisions, and a lack of familiarity among physicians, compounded by the fact that there is rarely a consensus on therapeutic recommendations.


Living with a rare disease places a massive burden on the entire family, as finding adequate treatment feels like an uphill battle. These hurdles stem from misdiagnoses, information gaps, insufficient scientific expertise, subpar medical care, social fallout, the high cost of drugs, and systemic failures in accessing necessary treatments. Given this reality, establishing specific public policy at the national level is absolutely essential.

If you aren't sure whether you are dealing with a rare tumor, please reach out to us.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2095 ·
Dana Wilson33 said:I wanted to let you all know that Mom is doing well. They didn't find anything at all during her exam. Thank God. Thank you all for your kind words... I feel such a sense of relief.
At least we have a bit of good news on this thread for once...

I am truly glad to hear the results came back clear... but please, don't let your guard down just yet! View this moment as a guiding light to keep moving forward, and please, take care of yourselves...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2096 ·
Ashley Smith24 said:Michelle Fowler38,

everything hinges on what stage the cancer is detected at. It’s typically a relatively slow-growing malignancy, often evolving from polyps that gradually transform from benign growths into malignant ones—a process that takes quite some time. What you heard is correct—it tends to progress more slowly in older individuals—but that doesn't mean much if the patient waits too long to seek medical help.

The priority right now is ensuring your grandfather undergoes all the necessary screenings as soon as possible, to determine if the carcinoma has breached the intestinal wall or metastasized to other parts of the body. After that, one must face the battle bravely; the most vital thing is simply not to lose heart...

My mother, unfortunately, didn't seek help in time. It was a confluence of unfortunate circumstances—she was so consumed by caring for her dying grandfather that she neglected her own health—and once the symptoms became too pronounced to ignore, she accepted the thought that it was already too late and chose, of her own volition, not to undergo treatment. She kept the truth from us for a long time, though we eventually grew suspicious due to her general decline (the loss of appetite, the extreme anemia). Despite our persistent pleas and concern, we couldn't persuade her to go for an exam. One day, she simply said: "Why should I go? Just so they can tell me what I already know?" My blood ran cold in that moment; I realized she had known for a long time, but she didn't want to burden us, and knowing her nature, she understood that it truly was too late. Two weeks later, she was no longer capable of living independently, and that was when she finally had to see a doctor. She passed away exactly one month after her first appointment, and a part of me went with her.

I wish it hadn't been this way—that she hadn't hidden the truth and that she had fought. But she was a special person, strong and selfless, accustomed to giving rather than receiving. She carried her hardships within herself, always with a smile on her face, never wanting to be a burden to anyone...

Even now, it hurts that she wouldn't allow us to carry any of her burden; I find myself searching for my own fault, looking for an answer to where I failed, why she thought I was too weak to bear that weight... Reading this thread, I realize I was spared the immense anxieties and sacrifices that Angela Wright and many others on this forum have endured, spending months or even years caring for their loved ones, but I will perhaps never find peace of mind, because she left so alone, even though we loved her so deeply...

Forgive me if I have intruded with my story (as others have as well), it simply overcame me... I don't know how old you are, but it is incredibly important right now that you spend as much time as possible with your grandfather, talking about everything, including his illness, if he wishes to talk. He needs a pillar of support, and this is your chance to draw closer to him and do something beautiful. Don't let this opportunity pass...

Good luck!

Sometimes it is necessary to share stories like this, just to remind ourselves how difficult it is for our loved ones to face reality alone, and how selfish we can be in our desire to cling to them as long as possible, when the decision belongs primarily to them.

Don't take this the wrong way—not everyone is prepared for such grueling battles, nor is it easy to grasp why these illnesses happen to them specifically.

Regrettably... when a mother passes, a part of you goes with her... but you can be proud that she was brave, regardless of the fact that she didn't share that burden with you!

And unfortunately, there are no rules... young, old, children... no two cases are identical, only similar, and sadly, no one can say how much a person's body will endure.

So, take care of yourself... keep your mother in your heart... she left too soon, but not forever!
Robin Stewart44 Robin Stewart44 Member
10 messages
joined Sep 2012
#2097 ·
Nancy Hernandez43 said:Sometimes you just have to tell it like it is. We need to remember how much our patients struggle on their own, and honestly, how selfish we can be. We get so caught up in our own desire to keep them hanging on as long as possible, but at the end of the day, that choice belongs to them.

Don't get me wrong—not everyone is built for these kinds of brutal fights, and honestly, it’s a lot to process when you realize it's actually happening to them.

I lost both of my parents to cancer... My dad passed away from the absolute worst kind, going through more pain than anyone should ever have to endure. It’s the kind of thing where even if you try to imagine it, it’s almost impossible to wrap your head around—believe me, I couldn't even begin to picture it before it actually happened.

I remember asking an oncologist once how she’d actually describe the kind of pain someone goes through in the terminal stage. She didn't sugarcoat it at all. She told me, "Imagine someone taking a chainsaw to one of your limbs while you're wide awake, with zero anesthesia." And then she said that's nothing—maybe a 1/10—compared to what patients with bone cancer feel. Since that type of cancer hits the lymph nodes too, it's considered one of the absolute worst because the whole body is involved. It's like your entire system is just breaking down from the inside out... it's heavy stuff.

Right when Dad was on his deathbed, Mom got hit with a breast cancer diagnosis. She went in for that first big follow-up exam and just decided right then and there: she wasn't going to do any treatment. For the next three and a half years, I was right there by her side, watching every single high and low as she fought through it. In her own mind, she just didn't see herself as sick, so why bother with the doctors? Even when she had this massive open wound across her abdomen that eventually healed up, she still insisted she was fine. She basically just checked out of life and made peace with dying. She didn't take matters into her own hands or anything, she just let time take its course.

When someone is dealing with a really heavy illness, logic usually goes right out the window. It’s hard for those around them to truly grasp what's actually going on inside their heads. We might see what's happening on the surface, but we can never fully know the depth of what they're feeling or just how much pain they're actually enduring.

I was only in my early 20s when all this was happening, so honestly, it hit me pretty hard. There was just so much I didn't understand back then. But, if there’s one thing I’ve learned from watching both of my parents deal with their illnesses—and something I tell everyone now—it's this: when you see them in pain, don't let the rules stop you. Sometimes doctors won't give more morphine because they think, "Hey, they only have maybe 3 to 6 months left," and hospital protocols or ethics boards get strict about dosages, treating anything extra like it's euthanasia. Just ignore that mindset. Find a way to get them what they need. If they're asking for it, give it to them. And even when they can't really eat anymore? If they suddenly crave a banana cake—the kind where you have to bake it from scratch or drive all the way across town to find it—just do it. You might know deep down they won't be able to finish a single bite, but that doesn't matter. Buying it, baking it, or bringing it to them provides those tiny little moments of joy during the hardest days of your life. It's worth it.

And at the end of the day, we’re the ones left behind picking up the pieces... and honestly, it hurts. People love to say that time heals all wounds, but I think that's a lie. Time doesn't actually fix anything; it just makes that empty hole in your chest and the ache you feel a little more manageable over time. But let's be real—the pain they’re going through is on a whole different level. It's physical, it's brutal, and no matter how much medicine you throw at it, there comes a point where the body just hits its limit. When things reach that stage, you have to be selfless. You have to let them go if there’s no way back. Holding on because *we* want them here longer only ends up dragging out their agony, and honestly, it's just as hard on both sides. Also, please, don't ever judge people for how they deal with loss. Everyone handles grief differently. Don't pressure anyone—including yourself—to act a certain way or follow some social rulebook on how "mourning" should look. Every patient fights their battle in their own way, and everyone who survives them carries that loss in their own unique way, too.

To everyone going through exactly what I went through ten years ago: I’m sending you so much love. Seriously, I just want the best for you all. I hope you find the strength to carry whatever weight life has thrown your way, and honestly? I hope you have the guts to break the rules if that’s what it takes to get by...
Anthony Garcia19 Anthony Garcia19 Active Member
116 messages
joined Aug 2012
#2098 ·
Nancy Hernandez43 said:Sometimes you have to tell stories like this just to remind everyone how hard our patients struggle on their own. We can be selfish in our desire to keep them here as long as possible, even though the decision belongs primarily to them.

Don't take this the wrong way—not everyone is ready for a brutal fight, and it’s incredibly hard to wrap your head around why they're the ones going through this.

Sadly... when your mother passes, a part of you goes with her. But you can be proud of her bravery, even if she didn't share that burden with you.

And unfortunately, there are no rules. Young, old, children... no two cases are ever truly the same, only similar. No one can predict exactly how much a body can endure.

So please, don't forget to look after yourself too. Keep your mom in your heart. She left too soon, but she isn't gone forever.

I've spent a lot of time thinking about why people turn down treatment. Sure, sometimes it's an escape from the reality of being seriously ill, but more often, it's a lack of trust in doctors and medications, or a fear of hospitals and all the diagnostic tests. It doesn't mean they aren't brave. In fact, I think it takes a different kind of courage—the kind shown by those who want to live life to the fullest until the very end, prioritizing quality over quantity.

I know it's a personal choice that deserves respect, but man, it hurts. Especially when you realize your loved one was hiding the truth from you until the end. You know they were trying to spare you the pain, and they succeeded (since you didn't know at the time), but I think it's a huge loss for both sides—for the one leaving and the one left behind.

Usually, after all that secrecy, there isn't enough time left to say goodbye properly. I mean real, honest conversations about the past, present, and future that help ease the soul and make the parting easier. When you're just waiting for the end, it happens fast. Often the patient is already in the hospital, and a sterile hospital room isn't exactly the best place for a deep, personal talk...

I feel like we should all think about these things while we're still healthy and strong. It would help both ourselves and our families when those inevitable moments arrive. It's hard to think rationally once you first realize or suspect you're seriously ill. This kind of reflection should be a normal part of life, rather than a topic most people just avoid.

And thank you for the kind words about my mom. I've always been so proud of her, and I truly believe this goodbye isn't permanent.🙂
Henry Ramirez192 Henry Ramirez192 Newcomer
5 messages
joined Oct 2009
#2099 ·
Hey there,

So, we've got two leftover boxes of Xelod 500 mg just sitting around—we had to pay out of pocket for them since Mom is currently away getting her treatment done—so if anyone else is stuck buying this stuff themselves, shoot me a DM.
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#2100 ·
slyseal28 said:If you aren't sure whether you're dealing with a rare tumor, please reach out and ask us.

Does my diagnosis of ganglioglioma anaplasticum actually fit in here?

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