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Resources and support for families dealing with cancer and serious illness

Started by Angela Wright · · 👁 7 views · 3K replies

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Participants Angela WrightChristian Wilson16Morgan Williams4Jeremy Nelson3John Chase6steelbadger83hiddentiger80urbanjackal3silentviper30mistyranger4ruggednomad182placidfalconJerry Morales4frozenviper492velvetgull9Joshua Flores48Frank Ramirez23Roger Hall15Walter Cox5mellowlynx8boldjackal70northernfox9ALaura Gomez10 …
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#1 ·
Watching loved ones battle serious illnesses is an absolute nightmare, and it’s not just them suffering—it's the family members and everyone close to them who get dragged into the fray. Since our healthcare system and society at large are pretty terrible at providing the psychological support people actually need during these times, I decided to take matters into my own hands. Having been right in the thick of this struggle myself, I started this forum so those of us navigating these waters can offer genuine advice and real support to one another.

Feel free to vent or share your story here. I promise I will always be around to reply, offer some perspective, or at the very least, stand beside you while you're going through hell—which, let's face it, can often feel even more grueling than the fight against the disease itself.

I've walked through this fire personally, and honestly, I'm still walking through it. It's the kind of suffering no one should ever have to endure alone.

Sending big hugs to everyone.
Christian Wilson16 Christian Wilson16 Newcomer
6 messages
joined Jan 2007
#2 ·
It’s been three weeks since my grandfather finished his first round of chemo, and today was the day he finally started losing his hair.
He tried his best to keep me from noticing by wearing a baseball cap all day long, but I saw right through it. Sometimes, honestly, it feels like he has more inner strength than I ever will.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#3 ·
Carol Ramirez said:Today marks the third week since my grandfather’s first round of chemo, and his hair finally started falling out.
He tried to play it off by wearing a baseball cap all day, but he couldn't hide it from me. Sometimes I honestly feel like he has more grit in him than I do.

Yeah, there are moments when it truly looks like they're handling this better than we are. We stand there paralyzed, staring at a massive mountain of a problem, feeling like we should be doing something, yet we just freeze up.
I suspect your granddad decided that if someone in the family had to take this hit, it might as well be him instead of you.
There are days I wish I could just shoulder my mother's illness myself to spare her the struggle, but she’d likely find it harder. She always tells me that even though she’s still relatively young, she’s already lived a full life—she built a home, raised me, and says she couldn't be prouder of the person I've become. Meanwhile, I've got my entire life stretched out ahead of me.

Don't sweat it; your grandfather's hair will grow back, and it'll probably be thicker than it was before.👍
And even if it doesn't and he stays bald, as long as he's healthy, who cares? He can rock the shaved look!
Morgan Williams4 Morgan Williams4 Member
21 messages
joined Oct 2006
#4 ·
I totally agree—the weight actually falls harder on the healthy ones than the patient. A couple of years back, I was dealing with testicular seminoma, and honestly, the toughest part wasn't my own diagnosis; it was hearing from my sister how much my mom was breaking down at home because her son had cancer. She never let me see it, though.

Sometimes people go overboard trying to show support, but they end up suffocating the person who's actually sick. Worst of all, the patient sees nothing but pity in their eyes, which is a total motivation killer. In my opinion, you really have to tread lightly when you're reaching out to someone struggling.
Jeremy Nelson3 Jeremy Nelson3 Member
45 messages
joined Oct 2006
#5 ·
Angela Wright said:Because this is such an incredibly grueling period—not just for those battling illness, but for their family members and loved ones who get caught in the crossfire—and because there is such a glaring lack of adequate psychological support and other resources within our society, I’ve decided—having been personally swept up in this struggle myself—to start this forum. It's a space where we, who have faced (or are facing) these issues, can offer one another advice and genuine support.

Please, leave a post here. At the very least, I will always make sure to write back, offer some counsel, or simply be there for those of you who are struggling—perhaps even more intensely than the person fighting the disease directly.

Personally, I have walked through hell, and honestly, I am still walking through it... and I truly believe no one should ever have to endure this alone.

Sending big hugs to everyone.

Well, I suppose I'll join in too... if there is any way I can help out with advice, I would be more than happy to do so.👍
I’ve personally navigated these brutal illnesses several times—both of my grandmothers, and my father, who, unfortunately, lost his battle with it. Now, I am going through it all over again with my mother, and I am holding onto the hope that this time, we will win.😍 .
It isn't easy, but sometimes life just throws these unexpected, unwelcome curveballs at you...
Hang in there, everyone. Sending huge kisses!😘
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#6 ·
Morgan Williams4 said:It happens all the time where people swarm a sick person, trying to show they care, but they end up suffocating them instead. Worst of all, the patient sees nothing but pity in their eyes, which is a total motivation killer. In my book, you have to be much more careful about how you approach someone who's struggling.

I couldn't agree more. That’s why I’m calling once again for anyone with actual influence to push for a program within the general US healthcare system that includes psychological support and counseling for the families of those affected. Right now, there's only mental health resources for the patients themselves—not that anyone ever offered my mom a single session with a psychologist.
It's incredibly tough to know where to draw the line with behavior, because you need to stay completely rational, but everyone is under massive stress when dealing with such a radical situation.
John Chase6 John Chase6 Newcomer
5 messages
joined Jun 2007
#7 ·
I figured I’d jump in here too—honestly, I’ve been stuck in this constant tug-of-war with cancer for years now, but for the time being, I’m the one calling the shots, and I fully intend to keep it that way. Given everything I’ve already been through—you know, the whole gauntlet of surgeries, chemo, radiation, all those invasive tests and whatnot—I’m more than happy to be a resource for ANYONE who might need an extra hand or just some advice...🙂
steelbadger83 steelbadger83 Member
16 messages
joined Oct 2006
#8 ·
It’s so true, everyone seems to forget that the families of those who are sick need psychological support too. It isn't just that the patient doesn't get enough help—and certainly not the kind of adequate, free support you'd expect through insurance—but it feels like the families themselves aren't even considered at all.

In the United States (since they are such a practical people), they've put out all these different brochures, you know? Things like how to support a spouse, or how to help the kids, or the parents... I find those kinds of tips really helpful.

Personally, I've been thinking about registering a non-profit focused primarily on breast cancer, though maybe it could expand to other illnesses later on. I imagine it being organized so that a patient and their family could go to one single place to get all the information, advice, and recommendations they might need regarding their condition—everything from surgeons, oncologists, and internists to radiologists, psychologists, psychiatrists, physiatrists, physical therapists, nutritionists, and even holistic practitioners. As part of that, we could print brochures like: What to eat during treatment, How to talk to your children, What chemotherapy actually means and the different types available, how to handle yourself during radiation, physical activity and physiotherapy tips, or even the different stages of accepting a diagnosis and how behavior changes during that process.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#9 ·
steelbadger83 said:It’s true—everyone forgets that the families of those suffering need psychological support too. It's not just that the patient doesn't get adequate help, let alone free care via a referral; it's that the families aren't even considered.

In the United States (where people are pretty practical), have they released various brochures? Things like "how to support a spouse," "how to help children," or "supporting parents"? That kind of advice actually matters.

Personally, I'm thinking about registering a non-profit focused primarily on breast cancer, though we could expand to other types. The goal would be a one-stop shop where patients and their families can find all the information, advice, and recommendations they need regarding their illness—everything from surgeons, oncologists, and internists to radiologists, psychologists, psychiatrists, physiatrists, physiotherapists, nutritionists, and even holistic specialists. As part of this, we’d print guides such as: "What to eat during treatment," "How to talk to your kids," "Understanding chemotherapy: types and purposes," "Managing life during radiation," "Physical activity and physiatry tips," and "The stages of accepting a diagnosis and behavioral patterns."

That’s exactly what I was thinking. People here are essentially left to fend for themselves, and it infuriates me that while there is psychological support and groups available for alcoholics and drug addicts, there isn't anything similar for cancer patients—even though there are far more of them, and they often aren't even responsible for their own illness. If it weren't for the brave individuals fighting cancer who step forward publicly to demand access to free, top-tier medication, or to push for prevention through stem cell research and annual awareness days, the public wouldn't even be talking about this disease. It's just too terrifying for most people to face. In the minds of the average person, cancer is synonymous with death, and nobody wants to talk about death. But in the minds of the patients and their families, cancer is a fight for survival, and that fight involves much more than just successful oncological treatment.
hiddentiger80 hiddentiger80 Member
27 messages
joined May 2006
#10 ·
We could honestly use something like this right now! While we’re on the subject—could you ladies recommend a reliable oncologist? Feel free to send me a DM if that's easier. Thanks.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#11 ·
hiddentiger80 said:We could seriously use something like this here! While we're on the subject—can any ladies recommend a solid oncologist? DMs are fine. Thanks.

Dr. Gamulin at Mayo Clinic. She’s incredibly thorough.
urbanjackal3 urbanjackal3 Newcomer
4 messages
joined Jan 2007
#12 ·
Angela Wright said:I was thinking the exact same thing. In this country, you’re basically left to fend for yourself, and it’s incredibly frustrating. We have psychological support systems and AA groups readily available for addiction, yet there’s nothing comparable for cancer patients—even though they face much higher numbers and often aren't even responsible for their own diagnosis. If it weren't for certain brave individuals who step up publicly to fight for access to free, top-tier treatments, or if we didn't talk about prevention through stem cell research and an annual awareness day, the public wouldn't even acknowledge this disease exists. It’s just too terrifying; people don't want to hear it. To the average person, cancer is synonymous with death, and Americans don't like talking about death. But for the patients and their families, cancer is a battle for survival, and that struggle involves so much more than just successful oncology treatments.

I couldn't help but chime in here. Honestly, I’m tearing up because this hits home. This is my reality. It’s just one constant uphill climb. Twice in ten years. First it was Hodchkin, and more recently, soft tissue sarcoma. You eventually learn to accept it. There is no downtime. The hardest part isn't even my own pain; it's watching the people I love go through it.
congratulations on the topic, Angela Wright, and thank you for saying this!
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#13 ·
urbanjackal3 said:My life feels like one endless uphill battle, but that’s just the hand I was dealt. Twice in ten years. First it was Hodchkin, and just recently it’s been connective tissue sarcoma. You don't really "make peace" with it; you just live it. The hardest part isn't even my own pain—it's watching the people I love go through this alongside me.

There is no such thing as making peace, there is only acceptance. You're going to beat this too, because you aren't fighting this alone—you've got your family right there by your side!
We recently lost Zazie, a dear friend of ours here on the forum, to lung cancer. She once shared a story about how her stepmother, while they were waiting for test results, told her not to take everything so personally—that bad news is just one phase of life, and things fluctuate; today is one way, tomorrow is another. At that moment, she said everything finally clicked. She started treating her cancer like a chronic condition you simply learn to manage, and I truly believe she mastered that. She passed away happy (or so it seemed to me and everyone who knew her), because she knew exactly who she was, what she wanted, and what brought her joy. Most importantly, she learned to accept reality without ever actually surrendering; she kept fighting. In the end, she didn't lose; she gained a level of wisdom that most people don't acquire in a hundred years. You're gaining that same insight now, and you'll have plenty of time to pass that wisdom on to others because you're going to be around for a long time.
Hang in there. I truly respect your courage.🙏
hiddentiger80 hiddentiger80 Member
27 messages
joined May 2006
#14 ·
Angela Wright said:Dr. Gamulin at Mayo Clinic. She is an incredibly thorough doctor...

Thanks so much, 😘. I’ve heard that most of them just automatically recommend chemotherapy, but if there aren't any metastases, I really don't see the point in doing that...
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#15 ·
hiddentiger80 said:thanks 😘. I've heard most of them get sent straight to chemo, and if there aren't any metastases, I don't see much point in that.

It probably depends on the specific type of cancer, but honestly, it’s likely because it’s incredibly difficult to gauge what's happening at a cellular level. Doctors want to be proactive and stay ahead of it to prevent spreading; once things start moving, they often move at lightning speed.
To give you a real-world example, I knew a woman who went in for a routine mammogram through her corporate wellness program, and everything came back perfectly normal—nothing suspicious at all. Fast forward four months, and she felt a painful lump while showering. She was rushed back for another mammogram, and this time, they found a tumor that had already metastasized. Everyone was baffled how nothing showed up just four months prior, especially since there had to have been some kind of process occurring then that simply wasn't visible on the scan yet. She was sent immediately to an oncologist for full workup.
With certain types of carcinoma, the standard protocol is to use radiation and chemotherapy first to shrink the tumor, making surgical removal much more manageable later on.
Everything I just laid out was explained to me by Dr. Gamulin; she is truly a phenomenal woman and never hesitates to provide a thorough explanation.
urbanjackal3 urbanjackal3 Newcomer
4 messages
joined Jan 2007
#16 ·
I’ll take that compliment, though I wouldn't call it courage🙏

🙂 Thanks for the support. This is actually the first time I've opened up about any of this. I had surgery for a sarcoma about a month and a half ago. It went smoothly—they managed to clear everything out, so I dodged the radiation and chemo entirely. That was my first encounter with all of this. But you really have to be careful; I stumbled onto this one by pure accident. Who would have expected it to come back after exactly ten years, especially when I've been diligent with all my checkups? Honestly, it isn't even about being brave. This is just the pace my life moves at, and I prefer to just accept it as it comes, and I expect the people around me to do the same.
Ten years ago, cancer wasn't talked about nearly as much as it is now. You didn't have anyone to actually sit down and talk to—at least not regarding something like Hodchkin. There was nothing on the course of the disease, the treatments, the aftermath... anything. Now, unfortunately, I'm navigating it all over again with this sarcoma. Every malignant tumor is its own kind of nightmare, and we need to be talking about all of them.
To be honest, I find other injustices in our society much harder to stomach than this.

🙂
hiddentiger80 hiddentiger80 Member
27 messages
joined May 2006
#17 ·
@ Angela Wright - if the surgery was successful and everything looks clear, wouldn't an oncologist typically order tumor markers and either an MRI or a CT scan? And if those come back clean, why wouldn't they skip the chemo? Beyond that, what happens if something just feels "off" after the scans? Also, I'm curious—is every oncologist a generalist, or are they strictly specialized in the specific part of the body being treated?

@ urbanjackal3 - hang in there! I truly admire your courage and your outlook...😘
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#18 ·
hiddentiger80 said:@ Angela Wright - if the surgery was successful and everything looks clean, shouldn't an oncologist be ordering markers and an MRI or CT scan? And if those come back clear, why not skip chemo? Also, what happens if something just feels "off" after the tests? One more thing: is every oncologist a generalist, or do they specialize in specific body parts?

@ urbanjackal3 - hang in there! I really admire your courage and your backbone 😘

To give you a real-world example, when my mom was dealing with a brain tumor (glioblastoma), the surgeons managed to clear everything out. She was supposed to go straight into radiation and chemo, but because the prognosis looked so grim, she decided to pass on it. She just wanted to live out her remaining time without being tortured by side effects. Four months later, she had an MRI, and nothing showed any sign of a recurrence (there aren't really specific blood markers for brain tumors). But then, just two months after that MRI, the cancer came back, and she finally agreed to the radiation and chemo.
Look, not every cancer behaves the same way. You're dealing with different types and vastly different stages, which is exactly why finding a top-tier oncologist is vital—you need someone who can actually weigh the options and figure out the right strategy.
silentviper30 silentviper30 Newcomer
2 messages
joined Jan 2007
#19 ·
Angela Wright said:Because things get incredibly heavy—not just for those fighting the illness, but for their families and everyone close to them—and because our society doesn't provide nearly enough psychological support or actual help, I decided to start this forum. I’ve been right in the thick of it myself, so I want us to have a space where people who have been through this, or are going through it now, can offer advice and pull each other up.

Post whatever is on your mind here. I promise I’ll always be around to reply, offer some advice, or just sit in the trenches with you. Sometimes being the caregiver or the bystander is even harder than facing the disease head-on.

I’ve lived through hell, and honestly, I’m still walking through it. No one should ever have to go through this alone.

Sending big hugs to everyone.

congratulations on the topic! I'll jump into the conversation if I can help anyone out...
hiddentiger80 hiddentiger80 Member
27 messages
joined May 2006
#20 ·
Angela Wright said:In my mother’s specific case with her brain tumor (glioblastoma), everything had been surgically removed, and she was supposed to move on to radiation and chemo. However, because the prognosis was just so incredibly grim, she decided to pass on those treatments, wanting to spend what time she had left without all that suffering. Four months later, she had an MRI, and there was absolutely nothing showing a recurrence—since, as we know, there aren't really specific biomarkers for brain tumors. Then, just two months after that MRI, the recurrence hit, and she finally agreed to go through with the radiation and chemotherapy.
The point is, not every cancer behaves the same way. There are so many different types and stages, which is why having top-tier oncologists is absolutely vital to assess the situation and determine the right course of action.


thank you 😘. You know, you truly are such a brave young person... I always say that there is a reason for everything that happens to us, and that life only hands us exactly what we are capable of handling. This situation just shows how strong you are, even if you probably didn't realize it until you were faced with it... 🙂

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