Support resources for families dealing with cancer and other serious illnesses

mellowpilot93 said:Hey everyone. I'll get straight to the point—my dad was just diagnosed with colon cancer. We still have a CT scan to get through and we're waiting on cytology results to nail down the specifics, but... surgery is definitely on the table. I don't live in the city, and I want to make sure I find him the absolute best surgeon possible for the actual procedure. Does anyone have any recommendations?

thanks

Whereabouts are you located specifically?
I've seen plenty of people travel all the way to a major metro area based on assumptions, when they actually had a top-tier specialist right in their own backyard. Because of how common they are now, colon surgeries have unfortunately become pretty routine.

Glioblastoma multiforme... man, just hearing those two words together gives me the chills. Honestly, scrolling through these threads, I’m seeing way more cases than I'd like to admit. People, please, share what you know—let's try to figure this mess out together. For the last month, my mom's been taking this supplement called Todoxin from Belgrade—well, according to Angela Wright, it's a dietary supplement but with a slightly different philosophy behind it. Even though it hasn't actually stopped the tumor from growing, it's made a noticeable difference in how she feels lately. Like, a real, visible difference. Angela Wright, have you come across anything else new? Come on, everyone, talk to me...

Matthew Taylor6 said:I just can't keep up with treatments anymore. I don't have the energy for more hospital visits, and honestly, I don't have the will to keep pushing forward. I've even started skipping my medications because I just can't bring myself to do it. It's only when the pain becomes unbearable that I promise myself I'll try to find some relief before things get even worse.
My family doesn't know. I can't find a good reason to tell them, and frankly, I don't even know how to start that conversation.

Before my mom got sick, I didn't have much personal experience with this disease. Even just hearing the word used to terrify me—the mere thought was nightmare fuel. I remember shaking uncontrollably the first time I walked into the oncology wing with her. Seeing her fight, seeing the patience and sheer effort required... it’s indescribable. Getting up both mentally and physically every single day is incredibly hard. I truly admire her for managing it. I really don't want her to give up. Not at all. I suspect your family feels the same way you do, so please, don't shut them out. Whatever you need to say, just say it. The method doesn't matter. In times like these, family is everything. I know it's easier said than done, but please, don't give up.🙂

Matthew Taylor6 said:I just can't face treatment anymore. The idea of dragging myself to hospitals feels impossible. I have zero drive left to push through this. I’ve even started skipping my meds because I simply don't have the energy to care. It’s only when the pain hits a level that becomes truly unbearable that I make a quiet promise to myself to try and manage things before everything spirals even further out of control.
My family... they don't know. Honestly, I can't find a single good reason to tell them, let alone figure out how to actually say it.

We were actually discussing the choice to stop treatment at our support group recently... and we all agreed that walking away is a valid decision that every patient has the right to make. We also agreed that you can't judge anyone unless you've walked a mile in their shoes...
That said, I still firmly believe—deep down—that there is value in fighting until the very end, both for your own sake and for the people who love you and rely on you.

And besides, you never, ever know what might happen next...

Take a look at this link

It might actually be worth reaching out to the support group...

Angela Wright, there are times when feeling grateful for life just feels out of reach. Am I right in thinking you’ve dealt with loss? I hope this doesn't sting—it isn't a judgment on humanity, merely an observation about my own inability to feel much of anything toward life lately.
Thank you for getting back to me. Sometimes, when things fall apart, you find yourself reaching out for help in places you otherwise wouldn't. I don't see many dedicated support groups for patients here, and turning to those close to me feels... difficult. So, in a moment of weakness, this seemed like the most appropriate place. Honestly, I already feel a bit uneasy being here today, but yesterday, I just needed some kind of support.

Sophia Ross53, thank you for such a heartfelt response. Your mom rocks—and so do you.

slyseal28, thanks to you as well. I'm not quite sure who it is you're writing for? Whoever they are, I wish nothing but the best for you, them, and your family.

Hang in there, Matthew Taylor6, I know things are rough right now, but you've got this.
Life is just too precious, and every single minute we get to spend with the people we love is a blessing. Every night, I thank God that my aunt is still here with me, and I just pray He gives us more time together.
We all hit rock bottom sometimes, which is why you're in the right place. I am an absolute pro at venting, and my friends have endless patience with me, so reach out and we can commiserate together...

I want to share my favorite saying with you, "La vita e' bella"...
Stay strong.

Matthew Taylor6 said:Angela Wright, there are times when it’s hard for me to feel grateful for being alive. I think you might have lost someone? I'm sorry if my thought hurts you a bit, but this applies strictly to my own life and my inability to feel certain things about it—it isn't a judgment on humanity as a whole.
Thank you so much for responding. Sometimes a person hits rock bottom and ends up looking for help in places they normally wouldn't bother with. I don't see many dedicated threads for patients on this forum, and it feels way too heavy to turn to people close to me for this kind of support. That’s why this seemed like the right place during a moment of weakness. Honestly, I already feel awkward being here today, but yesterday, I just needed some help.

Sophia Ross53, thank you for such a beautiful response. Your mom rocks. You do too.

slyseal28, thanks to you as well. I'm not quite sure who you're writing for here? Whoever it is, I hope nothing but the best for you, that person, and your family.

Why would I be offended? We all live inside our own skin, but outside of that, we can—and should—have support, regardless of whatever decisions we make in life, provided we make them consciously and rationally. We can certainly help one another through that.
Try logging into the association's forum; plenty of patients post there. I'm sure that could give you extra motivation and maybe point out some nuances you haven't noticed yet (it seems to me you're female 🙂 )

Most of us here have faced a diagnosis at some point, either directly or indirectly, and we all know exactly what comes in that package. Both slyseal28 and I lost our loved ones, but the fight went on until the very end in both our cases. Of course, there were setbacks, but we pulled ourselves up together and kept moving forward, and every single moment of that struggle was worth it. It made us and our loved ones better people. It built us up and taught us how to truly appreciate life in its fullest sense.

Carl Morales48 said:Glioblastoma multiforme—those two words alone are enough to make anyone's stomach turn. Looking through these threads, I’m seeing quite a few cases popping up. People, please, share what you know; we need to learn from each other's experiences. Over the last month, my mother has been taking something called Todoxin from Belgrade—or so Angela Wright tells me. It’s technically a dietary supplement, but it operates under a slightly different philosophy. While it hasn't stopped the tumor from growing, it has visibly helped her feel better lately. Angela, have you come across any new info? Let's hear it, everyone...

Hey,
I mostly update you on glioblastoma based on what I pick up from the association forums, since that's where you get the most movement from people facing the same diagnosis.
The latest news I've gathered involves that clinical trial in the USA involving stem cells on the first patient. I posted a link to a video on the forum.

Angela Wright said:Where are you from, specifically?
People often come to NYC based on misconceptions when they actually have access to top-tier specialists back home. Unfortunately, colon surgeries have become pretty routine because they happen so frequently now.

Columbus...

I’m feeling a bit uneasy about posting here today, but I really needed some support yesterday.

Sophia Ross53, thank you so much for such a kind response. Your mom rocks, and so do you.

slyseal28, thanks to you as well. I’m not quite sure who you're writing for here, but whoever they are, I wish nothing but the best for you, that person, and your family.

I'm just glad if I could be of any help. There's absolutely no reason to feel awkward. That's exactly why we're all here—to support one another.

Matthew Taylor6 said:I can't deal with medical treatments anymore. I just don't have the energy for hospital visits. I don't have the will to keep pushing forward. I'm skipping my medications because I simply lack the motivation for them. It’s only when the pain becomes absolutely unbearable that I promise myself I'll try to help myself before things get even worse.
My family doesn't know. I can't think of a single good reason why I should tell them. Nor do I know how I would even say it.

When my dad was sick, I accompanied him to every possible hospital for tests, and I can understand how just that process alone can drain a person's entire will to live. Of course, I can't even begin to imagine what it feels like for someone undergoing chemotherapy and radiation, so I don't think anyone should be judged if they decide to stop treatment... but there is something else—after a horrific surgery and radiation, my dad found out he had to start chemo. I remember it like it was yesterday, how he told us he had had enough of everything and that he would only continue treatment for our sake. I can't even fathom how I would feel if he had told me then that he was giving up.😢
He fought until the very last second... after he passed, I was devastated and cried every single day—but what constantly runs through my mind is that he TRULY, TRULY wanted to live, that he didn't give up, and since he eventually had to go, I cannot afford to waste my own life...😢

So, there. I hope that gives you at least a tiny bit of motivation to keep going. I wish you all the best.😘

mellowpilot93 said:small towns

I can't speak for the local vibe there, but if you don't have some kind of inside track in Washington, D.C., landing that transfer is going to be an uphill battle. Everyone's facing budget cuts right now, so the folks in D.C. are doing everything they can to reject anyone who could just get treated locally instead.
Give Rib a shot regardless—though Vineyard is also a solid option.

Matthew Taylor6 said:slyseal28, thanks to you as well. I honestly can't say who you think I'm writing this for. Regardless, I wish nothing but the absolute best for you, that person in your life, and your whole family.

I actually started posting here because of my husband. Through this community, I met Angela Wright and a few others, and together we founded an Association called For a New Day, dedicated to those battling cancer, along with their families and friends. We do our best to support people who find themselves walking the same difficult path we did; we try to push for systemic changes and spread vital information for patients and their loved ones. It's a constant effort, really... and we just hold onto the hope that some things will actually change for the better.

I'm wondering how you all handled the uncertainty while waiting for a diagnosis? Did your loved ones share their fears and feelings with you? I've been waiting over three weeks for my biopsy results on a mole, and honestly, I'm convinced it's melanoma that has already spread. Here is why: it started growing upward, it had nodules inside, multiple colors, and was asymmetrical. All of that was happening six months ago. When I was pregnant, I saw a dermatologist who told me not to have it removed before giving birth—that I didn't need follow-ups or even to monitor it. I just trusted her like everyone else does. But after the baby came, it changed drastically. It turned soft, almost like a grape, faded, started stinging intensely, and developed more white patches. Then came the pain in my groin that spread down both legs to my knees and hips. Less than a month after giving birth, I finally went to get it removed, but even a month later, I still don't have the results.

I feel certain that it's advanced melanoma. I know surgery is the main way to handle it, and in this stage, I doubt chemo will do much either. How am I supposed to face my family while thinking like this, especially without an official diagnosis? I broke down crying in front of my husband once, and today, I finally told him my biggest fears...

It’s a shame there isn't a thread like this specifically for those who are currently sick.😢

I know about your Association and thought about posting there too, but it doesn't seem like people post much... should I just copy my post over there?

Rachel Ruiz94 said:I really want to know how your loved ones reacted during that period of uncertainty while waiting for a diagnosis. Did they actually open up and share their fears and anxieties with you? I’ve been waiting over three weeks for my biopsy results, and honestly, I’m convinced it’s melanoma that has already metastasized and progressed. My reasoning? It started growing vertically, it developed nodules, more colors, and became asymmetrical—all of that was happening six months ago. When I was pregnant, I saw a dermatologist who told me not to have it removed before giving birth, that I didn't need follow-ups or even to monitor it. I did what anyone would do and just trusted the doctor. But after the baby came, it changed drastically: it turned soft like a grape, faded, started stinging intensely, and developed white patches. Then came the pains in my groin that spread through both legs down to my knees and hips. Less than a month after giving birth, I finally went to get it removed, but even a month after that, I still don't have the pathology report.

I know what an advanced melanoma looks like. I know that surgery is the primary way to handle it, and in a case like this (if that's indeed what it is), chemo isn't going to be the magic bullet. How am I supposed to face my family while spiraling through these thoughts without a confirmed diagnosis? I had one breakdown in front of my husband, and today I finally laid out all my worst doubts and fears...

It's a shame there isn't a dedicated thread for those who are actually sick.😢

I know about your Association and thought about posting there too, but it doesn't seem like much gets written there... should I just copy and paste my post over there?

I totally get why you're scared, but when life hits this hard, you can't just jump to conclusions and assume the worst without any proof. Even doctors won't do that.
Hormonal shifts likely caused the mole to change, and those pains you're feeling could easily be the aftermath of childbirth and your pelvic bones settling back into place.
Don't sit around waiting for them to call you with the final pathology report; pick up the phone and badger them! If things are as bad as you fear, waiting a whole month for a lab result is an absolute joke.
Post on the other forum too. People read it, and I'm sure someone will reach out. The forum probably isn't as active because there aren't as many melanoma patients compared to people dealing with lung, colon, or breast cancer.
And please, stop mentally treating yourself as if you're already sick. You simply don't know that yet.

It seems nothing ever works quite the way it’s advertised—just a bit of verified info here, in case anyone ever finds themselves in need.
Over on another forum, John Doe posted about how an American Hospice Association supposedly provides all the necessary oncology care equipment for free. All you were allegedly supposed to do was call them up and show up with a medical history and an ID.
I went ahead and checked that out myself, only to find out it isn't true—and the actual process is far from simple.
First off, the patient has to be officially admitted to hospice. Then, you have to coordinate a home visit with a doctor, who will then evaluate whether the requested equipment is actually necessary. And keep in mind, this only applies to patients in the terminal phase living within the Washington, D.C. area.

ironsailor22 said:Since things in this country almost never work out the way they're advertised, here’s some verified intel just in case anyone needs it.
On another forum, we spotted a post from a John Doe claiming that an American Association for hospice friends provides all the necessary oncology care supplies for free; apparently, you just call them up and show up with your medical history and ID.
I actually went ahead and checked, and turns out that's total nonsense—it isn't nearly that simple.
First off, the patient has to be officially admitted to a hospice program, then you have to coordinate a home visit with a doctor, and only after that evaluation can the doctor decide if the requested equipment is actually necessary. And keep in mind, that specific rule applies to patients in terminal stages within the Washington, D.C. area.

Well, thanks a ton for the heads-up. We'll give our colleagues there a call to see what's actually going on, because since those posts were originally written by their own volunteers, it's pretty obvious something has changed.

ironsailor22 said:Things around here are never what they seem. It’s a fact. Here is some verified info just in case anyone ever needs it—God forbid.
On a different forum, some John Doe posted saying that the American Hospice Friends Association provides all the equipment needed for oncological home care for free. They claimed you just call them up, show up with your medical history and an ID, and you're set.
Well, I went ahead and did exactly that, and let me tell you: it’s a lie. The process isn't that simple at all.
First, the patient has to be officially admitted to hospice. Then, you have to coordinate a home visit with a doctor. Only after that visit can a doctor actually assess if the requested equipment is even necessary. And keep in mind, this only applies to terminal patients within the Washington, D.C. area.

hmmm... I personally used them to get oxygen and an aspirator for my dad. They were incredibly kind and there wasn't a single complication. I just called them, arranged a time to swing by (either the next day or the day after), and everything was ready and waiting for me. No referrals, no doctors, nothing.
The only thing they did was make a copy of the medical records for their own files.

And honestly, the women there were more than lovely... huge thanks to them. 😍

brisksurfer said:hmmm... I used to go to them to pick up oxygen and nebulizers for my dad. They were incredibly kind, and we never ran into any issues whatsoever... I’d just give them a call, set up a time to swing by (either the same day or the next), and everything would be ready and waiting for me. No need for referrals, doctor's notes, or anything else.
The only thing they did was copy over the medical history for their own records.

And honestly, the ladies there were more than just polite... I'm really grateful to them for that. 😍

It’s obvious that their operating procedures have shifted. Up until now, they’ve requested medical histories, which is perfectly reasonable, but they never forced anyone to join an association or sign up for home visits. That feels completely wrong to me. It’s like if we suddenly shut down this forum and stopped sharing information with everyone except our paying members, essentially lobbying only for our own group instead of all cancer patients.
We'll see where they actually stand, though. I’m going to reach out to them on Monday and ask for a brief summary so people can get the facts straight.

ironsailor22 said:Since things are rarely ever as straightforward as they seem around here, let me offer some verified info just in case anyone needs it.
On another forum, I stumbled upon a post claiming that the American Hospice Friends Association provides all necessary oncology care equipment for free—all you had to do was call them, show up with an original and a copy of the medical history, and present an ID.
I actually followed those instructions, only to find out it’s completely inaccurate and the process isn't nearly that simple.
First, the patient has to be officially admitted to hospice. Then, you have to coordinate a home visit with a doctor, and only after that assessment can the doctor determine if the requested medical aids are actually necessary. And keep in mind, this specific service only applies to patients in the terminal phase within the Washington, D.C. area.

That information might have been valid a year ago. I know because I personally called them regarding someone needing an oxygen concentrator. It’s possible they’re struggling with staffing shortages or budget constraints, given that they operate as a non-profit, much like our own association. That text was originally written by a volunteer working there at the time.

In any case, it’s a good thing you spoke up about the change; it’ll help prevent others from being misled...