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Support resources for families dealing with cancer and other serious illnesses

Started by casualpanther1 · · 👁 59 views · 1.9K replies

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Participants casualpanther1quietpilot87Angela WrightJames Young87Zachary Howard2Benjamin Grant6wanderingharbor61Roger Hall15Zachary Booth3brightgardener8feralwolf24hiddentiger80Karen Fox36Elizabeth Diaz60slyseal28Linda Wright5James Martinez3Jeremy Kelly6gentlemoose62Maria Scott4shadowmason6Kevin Edwards35jadetinker42John Chase6 …
granitebadger21 granitebadger21 Member
11 messages
joined Nov 2008
#1281 ·
I honestly don't know which other hospital I could possibly turn to, or even who is left to ask... My gynecologist has completely run out of ideas. 🤷

But I'm not going to panic just yet; I'll save the panic for after my CT scan this Monday. 😁
mistyjackal842 mistyjackal842 Active Member
206 messages
joined May 2012
#1282 ·
Hang in there, granitebadger21. Just stay strong, and I truly believe everything will turn out okay.

It breaks my heart to see so many of you struggling with such heavy diagnoses. In my family, we’ve faced this too; my grandmother passed away from lung cancer five years ago, though she was quite elderly at 91 and a half. My grandfather passed ten years before that from bladder cancer when he was 85. I know Grandma was very old, but it still shocked me how quickly they seemed to write her off—they wouldn't even give us a clear diagnosis at first. She spent a day in the outpatient clinic getting a blood transfusion because her anemia was so severe, and the staff just told my mom it was pneumonia. It wasn't until my mom actually pushed them and asked, "Well, aren't you going to try some antibiotics to treat this pneumonia?" that they finally gave her something. We didn't get the actual truth—that it was lung cancer—until ten days later, when my mom took her charts and X-rays to a pulmonologist for a second opinion. That doctor basically said there wasn't much more they could do given her age, so instead of aggressive treatment, the focus should just be on providing the best possible comfort care. She stayed in her own apartment until the end, just as she wanted. During that time, my mom moved in with her permanently, and I was there every single day. We had a nurse through social services and a physical therapist helping out. But since she became immobile and needed help with incontinence, that wasn't enough. We ended up calling an agency for home care called Domnius within hours, which I honestly highly recommend. Monica was this wonderful young nurse who would watch Grandma for a few hours while my mom was at work, and we made sure to pay her full rate for everything she did. A physiatrist actually suggested we move her to a facility called Villa Nonica over in Brooklyn, but we visited, and it just felt wrong to us—especially the ward where the non-ambulatory and critically ill patients were kept. So, Grandma stayed home. For the last month or two, she couldn't even speak and was in a semi-conscious state, which was... it was a really difficult period for all of us. Grandfather was a bit younger when he passed, and he remained lucid and able to talk until the end, so he was actually able to say goodbye to me the day before he died. He passed away at home, too. I was only 16 back then, and it hit me pretty hard, but I felt so proud to have had such a brave grandfather who faced so much with such courage.
Maria Lee54 Maria Lee54 Member
42 messages
joined Oct 2008
#1283 ·
I'm reading through all your posts... sending my best to everyone! granitebadger21, I’d love to give you some advice on where else to look or which facility to contact, but I honestly don't know enough about the medical side of things... and there's no point in pretending I do. We can't afford to panic right now; it just makes everything harder. I know how tough this is, and it’s truly heartbreaking that you're basically left on your own just because a machine is out of order. It's unbelievable, dear God... but don't let this stop you. Keep asking questions, keep searching, and seek out more second opinions. Stay positive. A solution will come. It has to. Hang in there and stay strong.
Nicholas Hughes2 Nicholas Hughes2 Newcomer
2 messages
joined Oct 2008
#1284 ·
Angela Wright said:It’s an analogy, not logic.
😕
Honestly, I feel just as bad that we aren't seeing eye to eye...

An analogy is actually a logical method—I just didn't quite catch how you were applying it here... 😁
but whatever, this isn't really the place for arguing over semantics 😉

granitebadger21 — please don't think you're being dismissed or anything, it's probably just that the doctor is more focused on being a clinician than a human being... they clearly didn't make the effort to explain everything to you properly like they should have.
For stage IIb, better results are usually seen through primary combined radiation therapy. Surgery is typically an option if there's minimal involvement of the paramaters—especially for younger patients—usually paired with adjuvant radiation.
That is the standard protocol for treating your type of cancer.

Unfortunately, I'm running out of ideas on who else you could call... 😕
Have you looked into Mayo Clinic?
Or maybe MD Anderson? Here is a number for one of them:
CLINIC FOR ONCOLOGY AND NUCLEAR MEDICINE
Phone: 1-800-555-0199; fax: 1-800-555-0122

Just hang in there... 😉
granitebadger21 granitebadger21 Member
11 messages
joined Nov 2008
#1285 ·
Thanks everyone for all the kind wishes 😍

I’m not panicking at all, honestly—I’m just joking around... I don't know if that's considered a healthy way to handle things, but I find myself being amused by it all... that's just how I am. I was practically singing to myself during my biopsy... 🙈

The way I see it, at least now I know exactly what I'm dealing with... my blood work is fantastic, including triglycerides, cholesterol, and a whole host of other miracles (except for that damn blood sugar 😠), my EKG is perfect, my blood pressure is textbook normal (even though I've battled hypertension for years, look at me now 🙂), my chest X-ray came back clear, and my kidneys and liver seem to be doing just fine according to the labs... frankly, I'm as fit as a fiddle. 👏
And that little 5 cm brat can't touch me, because I simply won't let him. That's that, 🙂

Oh, and I have an update: my GP called the oncologist, and he says this isn't actually an emergency at all; it hasn't just appeared overnight and it isn't going to sprout aggressively this fast, so he'll be calling me back in about 4 to 6 weeks. Well, alright then.

I'll post the CT results once I manage to make sense of what they're actually saying. 😁
granitebadger21 granitebadger21 Member
11 messages
joined Nov 2008
#1286 ·
Thanks for the response, Maria Fox, but in my case, the parameters are only affected halfway through and specifically on the right side... And am I not supposed to fall into the younger patient category??🙂
Nicholas Hughes2 Nicholas Hughes2 Newcomer
2 messages
joined Oct 2008
#1287 ·
granitebadger21 said:Thanks, Maria Fox, for the reply... In my case, the parameters only seem to be affected halfway through—and just on the right side, too. Wait, am I not supposed to fall under the younger patient category?? 🙂

If you ask me, you’re basically a young patient too—I mean, by their own standards, you really should be—but it seems like they only count people who are actually, well, *really* young... I don't know... 😢
It’s honestly such a relief that things haven't been too heavily touched... or overdone—it just keeps everything feeling much more authentic, you know? 🙂

And as far as joking around goes... honestly, it’s just great that you can do that... it really is. 🎉
My mom was exactly the same way—though she was dealing with a different type of cancer—both leading up to her surgery and even now... she just refused to let the dark thoughts win. She kept joking around and telling everyone she wasn't going to let this thing get the best of her. Honestly, I think the absolute worst thing you can do is just give in and start spinning those horrible, dark scenarios in your head... it just drags you down. People recover from stuff like this and go on to live full lives for decades—so why shouldn't you be one of them?!
I mean, look, it’s honestly such a relief that everyone else's labs are coming back looking solid—well, aside from that sugar issue—so it really means you're going to have a much easier time bouncing back from the treatments... and when you're fighting a battle like this, having that extra strength to recover really does make a world of difference... 😉

So now you're just stuck waiting those next few weeks—nothing else you can really do... and honestly, you know that old saying: patience is a virtue... or well, patience saves the day... 😉
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1288 ·
Maria Fox said:Analogies are actually a logical method, I just don't see how you applied it here 😁
But whatever, this isn't the place to debate nonsense 😉

Look, I wasn't going to reply to you, but now I have to, because otherwise I'm just sitting here looking uneducated and dense.
Let me finally walk you through my thought process and the analogy I spotted here—since you once again wrote an observation that you yourself labeled as unimportant (which is why you bolded it). You also went after me in that other thread because you felt personally attacked by my view that life doesn't operate on some fair, predictable system. You took my stance as if I were lecturing you, stating: "...without the need for someone to explain that this is just life, because I am fully aware of that myself..." Well, here is my logic based on that analogy: if you already know that, why write it out as if you don't? It’s redundant, isn't it? A complete waste of breath.😉

And please, stop treating everything I write as a personal vendetta against you, for God's sake... and honestly, I have no idea what my work with the nonprofit has to do with anything I've said to you, let alone with anyone's frustrations or treatments 😕That actually feels insulting 😠. I work with the foundation because I'm trying to take all the negativity my family and I have faced and turn it into something positive—to give our tragedy some sense of purpose. Believe me, when you're trying to tackle the absolute garbage we deal with every single day for the benefit of everyone suffering, those frustrations feel like a hundred-ton weight. I am a pure altruist, no matter how strange that might seem to you in today's world of frustrated people. ☕
You have every right to be frustrated, but some things are just cold, hard facts, and that's what I was writing to you about . Everything else is just a matter of opinion. Sorry, but that's just how it is.🤷
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1289 ·
@granitebadger21/">@@granitebadger21
Reach out to the association so we can investigate why you're being kept waiting for so long. Besides, our Secretary of Health recently stated that no patient should be waiting more than a week for their medication. I'd say that applies to your situation too.
Regarding whether surgery is an option, there are several different factors that go into that call. In a case like this, you really ought to seek a second, if not a third opinion, with a full explanation.

Rebro doesn't have a gynecology department. You might want to try contacting the hospital at Holy Spirit.
Nicholas Hughes2 Nicholas Hughes2 Newcomer
2 messages
joined Oct 2008
#1290 ·
Angela Wright said:Look, I really didn't mean to dodge you... but honestly, I feel like I have to speak up now—otherwise, I’m just going to end up looking totally clueless and uninformed...
Look, let me finally lay out my train of thought for you—and the analogy I saw playing out here too—because once again, you’ve written down an observation that you personally think is trivial (which is why you put it in bold)... And honestly, you totally tore into me in that other thread, didn't you? It felt like you took my take on how life doesn't exactly run on a fair or predictable system as a personal lecture... which led to you snapping at me, saying something like, "...there's no need for anyone to explain that this is just life because I am fully aware of that myself"... but see, that's where my logic comes in regarding the analogy: if you already know that, then why write it out like you don't? I mean, isn't it just redundant? Pointless?...😉

And look, please don't take everything I say as some kind of personal attack—for God's sake... honestly, I'm just being real. And, well, I really don't see what my work with the association has to do with anything I've written to you, let alone with anyone's frustrations or their actual medical treatment...😕Honestly, it actually feels like a personal insult to me...😠I work with the association because I’m trying to take everything negative that’s hit me and my family—all of it—and turn it into something positive... you know, to give our whole tragedy some kind of higher purpose. Believe me, if you tried to actually grapple with all the crap we deal with on a daily basis just to help everyone who's sick, those frustrations would feel like a hundred-ton lead weight dragging you down. I'm a pure altruist—as weird as that might sound to you today, in a world full of people who are just so incredibly frustrated...☕
You have every right to feel frustrated... honestly, you really do. But look—some things are just plain facts, and I’ve already laid them all out for you in my previous messages...At the end of the day, everything else just comes down to choice. I'm sorry if that sounds blunt, but... yeah, that's just how it is.🤷

Look, my intention wasn't to be confrontational... that was never the goal.
I mean, that’s definitely a valid point you’re making—not insignificant at all—but honestly, it's not something I want to spend the next ten days debating here... especially in a space that is supposed to have such a much higher, more noble purpose. I really thought this was a place where we could all just share our thoughts and process things together—but after hearing your take on how the world works, I’ve realized I’d probably be better off just talking to people who don't fully grasp the nuances of what I'm saying anyway... since, thank God, they aren't going through the exact same thing themselves, nor are their loved ones...

It’s really just about the frustration—honestly, that's where it all started...
Alright, let's dive into the dictionary...
Frustration... it’s such a heavy thing, isn't it? It feels like this constant state of emotional tension—just this deep sense of discomfort, restlessness, and that nagging feeling of dissatisfaction that you just can't shake... It’s just... you know, when you're working toward something—really putting your heart into a goal—it’s rarely a straight line. You hit these hurdles, these unexpected roadblocks that just seem to pop up out of nowhere... it's like you're finally making headway, and then suddenly, everything just stalls. It’s those obstacles, those little setbacks or massive walls in your way, that really test whether you've actually got what it takes to see things through. ...or just fulfilling some kind of basic need.
So, to put it more simply—it’s just that whole messy mix of anger, pure misery, and total frustration... you know, whatever word you want to throw at it... all because of being sick.
I mean, you can't exactly tell me to just "get over" being sick—because let's be honest, that’s just not who I am—but I also can't just ignore how painfully slow medical science moves when it comes to actual breakthroughs... It's frustrating, really. Yeah, sure, I'm furious that we haven't found a way to just stop cancer from happening in the first place, but honestly? I feel pretty helpless about it all... because I don't have the expertise or the kind of money it takes to actually contribute to finding a cure.

I really hope things are a bit clearer now regarding where my head is at—maybe you'll finally get what I’m actually trying to say... honestly, this whole feeling of being so helpless just feels terrible.

I actually mentioned to the association that I didn't want them to take anything I said as a personal attack—because, honestly, I truly value everything you guys are doing... I mean, I really do. You’re out there trying to change things, pushing for progress, even when the odds are stacked against you and your resources feel so limited... it's a lot.

And what about you... I mean, how do you stay such an altruist in a world full of so many frustrated people? ☕ "
If you were trying to take a shot at me because you think I’m not doing anything worthwhile—and by "worthwhile," I mean on a human level, like the incredible work you all do in this association—then you totally missed the mark... though, honestly, this isn't really the place for me to start bragging about myself, so I guess that would be the end of it
Nicholas Hughes2 Nicholas Hughes2 Newcomer
2 messages
joined Oct 2008
#1291 ·
Angela Wright said:Rebro doesn't have a gynecology department. Maybe it would be worth reaching out to the Holy Spirit hospital instead.

What about Mount Sinai? 😕
I was honestly just scanning through the hospitals I could remember that actually offer radiotherapy... 🤷

And Angela Wright—look, I can't edit my post anymore, so I'll just leave this here... I think we should probably move the rest of this discussion to private messages...👋:
granitebadger21 granitebadger21 Member
11 messages
joined Nov 2008
#1292 ·
Angela Wright, thank you so much for the support, though I honestly don't think I need a second opinion anymore... he provided such a thorough explanation based on his own expertise (and since he’s an oncologist, I assume he knows his stuff), explaining that surgery offers the exact same efficacy as combining radiation and chemo. 🤷

There’s really no point in me calling around to other hospitals when everywhere else is just the same story—endless waiting lists, broken equipment, blah, blah, blah...

Besides, he mentioned this isn't an emergency, and I suppose he's right... I can wait; cancer isn't going to take me out overnight, especially since I've been happily married for nineteen years now... 😍
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1293 ·
Maria Fox said:My goal wasn't to offend you.
And look, I get what you're saying, but it’s not actually relevant to me right now. It isn't important enough for me to spend the next ten days bickering about it in a space meant for something much more noble. I thought we could share our thoughts here, but after listening to your lecture on how the world works, I’ve realized I’d rather save my venting for people who don't fully grasp what I'm talking about—mostly because they aren't going through this either, thank God.

It’s about frustration. That’s where it all starts...
So, let's pull from the dictionary for a second:
"Frustration is a state of emotional tension, discomfort, unrest, and dissatisfaction, caused by obstacles or difficulties in achieving a certain goal or satisfying a need."
To put it bluntly: it's just anger, misery, rage, or whatever you want to call it when you feel completely powerless.
And don't tell me to just "make peace" with being sick (because I’m not that kind of person, regardless of any other reason) or to be okay with how painfully slow medical progress is. Yes, I am furious that we haven't found a way to prevent cancer altogether. But I am also helpless in this situation because I don't have the specialized knowledge or the massive bank account required to contribute to a medical breakthrough.

I hope that clarifies my headspace and helps you finally understand where I'm coming from—this helplessness is devastating.

And regarding the association, please don't take my comments as an attack. I truly value everything you do and how hard you try to change things, even if your actual capacity to do so feels limited.

As for you playing the altruist in a "world of frustrated people"...☕
If you were trying to belittle me by implying I’m not doing anything worthwhile (and by "worthwhile," I mean on a human level, like the work you do with the organization), you missed the mark. Besides, this isn't the place for self-promotion, which would be the only point of saying that.

Here she goes again. No, I wasn't trying to put you down. Honestly, reading it back, I see how it sounds, since you're clearly feeling frustrated by this powerlessness. My bad. I was referring to people who are generally frustrated by trivial nonsense. Let's just call it a draw—1 to 1. I took your comment about the association as you trying to soothe your own complex.
Regarding my take on frustration, I think I made myself clear. To me, frustration caused by the helplessness of illness is counterproductive. You can feel powerless without necessarily feeling "frustrated" in the sense of being angry. Personally, I was never frustrated by my mom's illness. Okay, fine, I lied—I *was* frustrated. I was frustrated that out of all the malignant diseases out there, my mother had to catch the one with absolutely zero good prognosis or chance from the very start... that was the part that floored me and kept me stuck for about fifteen minutes. Then, I fell into despair and lethargy, which I fought my way out of after six months. I decided we had to fight and stop obsessing over everything else if we wanted to stay sane and live as normally and healthily as possible. I was desperate, I was sad, and yeah, I was angry at the doctors and the system (meaning, I'm not helpless; I push for changes in certain situations), but I was never again "frustrated" directly because of my mom's condition. Maybe I'm crazy, but honestly, that mindset made it so much easier to handle the horrible situations I faced.

I really don't want to discuss this anymore. Clearly, we are starting from two different places regarding how we perceive this. Beyond that, it's incredibly difficult to talk to someone who interprets every single thing I write as a personal slight or an attack on their views. I'm genuinely sorry it's come to this.
When it comes to self-promotion, I don't see anything wrong with sharing your own story if the goal is to help others. Personally, I wouldn't hold it against you at all if you wanted to write about your own situation. That’s exactly why this thread exists—so we can actually get to know one another and clear up any confusion.

@granitebadger21/">@@granitebadger21
Listen, if you change your mind, give me a call. But before you do, ask that doctor if he’s truly ready to take full responsibility if things take a turn for the worse in two months. I am genuinely curious to hear how he handles that question.
The way your tumor is sitting right now is actually a silver lining; it hasn't moved into the pelvic area and is still contained within the uterine body, which is a huge win. We need to keep it that way. I’m no doctor, so I can't tell you exactly how fast a tumor like that might progress, but my philosophy is simple: you never, ever give cancer an inch of breathing room.
Charles Ramirez59 Charles Ramirez59 Active Member
218 messages
joined Jan 2005
#1294 ·
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Buzet: Seven-month-old David Krušvar is critically ill and needs surgery in Padua; Damian and Denis Krušvar are asking for your support.

Let's give David a chance at life.

Helping little David: Seven-month-old boy in need of a liver transplant.
Susan Ruiz76 Susan Ruiz76 Active Member
51 messages
joined Aug 2012
#1295 ·
Angela Wright;17046245 said:@granitebadger21
On top of that, our Secretary of Health recently claimed that no patient should be stuck waiting more than a week for their medication.

In our case, we actually received a drug that wasn't even on the standard formulary from the hospital board within 24 hours—all thanks to a direct mandate from the Secretary sent straight to the hospital directors.
granitebadger21 granitebadger21 Member
11 messages
joined Nov 2008
#1296 ·
But I’m not actually waiting on a medication; I’m waiting for radiation therapy...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1297 ·
granitebadger21 said:But I’m not waiting for a drug; I’m waiting for radiation therapy.

And what is radiation if not a medicine? Radiation is simply a method used to treat malignant diseases.
granitebadger21 granitebadger21 Member
11 messages
joined Nov 2008
#1298 ·
What can I really do... I certainly can't fix the machine myself 🤷

But then again, nothing in my life ever seems to be straightforward; I went in for a thyroid ultrasound today because they said it was "slightly enlarged." The report mentions a nodule on the left and one on the right, suggesting a biopsy... but that’s not happening just yet, as I have to deal with this sciatica first. Honestly, I’m just dreading what else might show up on the CT scan 🙄

On another note, my white blood cell count is at 21.3 and my platelets are 430... and while the doctor tells me that the differential looks fine and there’s no sign of leukemia 😲... I thought to myself, hold on now, how could it possibly be leukemia? It feels like everything is trying to attack me all at once 🙂

The way I see it, my blood sugar is spiked from the stress, my white cell count has never really dipped below 16, everyone has a "slightly enlarged thyroid" these days, and as for the platelets, I suppose we'll see...
As I said, I'm otherwise as healthy as can be 😁
quietsurfer9 quietsurfer9 Newcomer
2 messages
joined Nov 2008
#1299 ·
Hey everyone, we’re looking for some info that would be a massive help to us right now. Honestly, we’re having a hard time wrapping our heads around the fact that all the radiation equipment across the US is reportedly out of commission at the moment, and there's zero word on when any of them will actually be back up and running. It feels totally surreal! If anyone happens to have the inside scoop on which hospitals might still have working machines—maybe one of them is still operational despite everything—please let us know.
thanks so much in advance.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#1300 ·
quietsurfer9 said:We’re begging for any info that might help us out here. It honestly feels impossible to believe that every single radiation machine in the entire country is out of commission right now, and nobody can give a straight answer on when they’ll be fixed. We just can't wrap our heads around the idea that this is actually happening! If anyone has any intel on which specific hospitals still have working equipment, please let us know—maybe there's still a chance somewhere.
thanks in advance.

If you check out the website www.zanovidan.com, you'll find a directory of hospitals with oncology departments. At this point, the only real option is to sit down and start calling them one by one to see if their machines are actually functional.

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