Posts by Robin Diaz4

Scott Davis32, I am so incredibly sorry to hear that... 😢

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At our local community health center, they actually have a dedicated palliative care program—I wonder if you guys have something similar over there? For my dad, they assigned us a specific doctor we could call whenever we needed, and they even offered to loan us a hospital bed and an anti-decubitus mattress at no cost. In the end, we turned it all down because we didn't want him feeling like he was stuck in a hospital ward right in the middle of his own home.

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Rachel Williams said:...Aside from the fact that her pulmonologist somehow managed to "diagnose" her again the other day (for the millionth time), those three doctors at the ER over at Mount Sinai were just staring at the labs and diagnoses, listening to the whole history, and still couldn't wrap their heads around how my mom is even standing right now.
As long as they're the ones left scratching their heads, we'll take it—we’re just happy and grateful she's here. 🎉🙂

Sending all our positive vibes out to everyone who needs them. 🙂

Signed, sealed, and delivered! Let them keep wondering!

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I was actually told that it isn’t even really about professional courtesy (though I’m sure that plays a part); it’s more that oncologists simply aren't trained in lung diseases to the same depth as pulmonologists, so they tend to stay in their own lane.
A friend of mine who’s a doctor put it perfectly: it’s like asking a surgeon to weigh in on gynecological issues. Sure, they know more about that territory than the average person on the street, but they certainly don't know as much as a specialist gynecologist. 🤷

As for transfusions, that’s the same story we were told—the less you need, the better. Ideally, you always want the body to handle things on its own. We always ended up waiting until the absolute last minute, partly because of that, and perhaps even more so because my dad just refused to go into the hospital until things became truly dire.

We actually tried getting my dad transferred over to the oncology department, but it was a total non-starter; every oncologist we spoke to insisted he was strictly under the purview of pulmonology since my primary diagnosis is lung cancer.
He only ever saw the hematology team when things reached a crisis point and he needed an emergency transfusion, which worked wonders for him—honestly, almost instantly—likely because he was already being treated with Medrol there, which seemed to give him that extra boost. In those moments, when his blood counts completely bottomed out, just a single transfusion was enough to get everything back to baseline. Aside from all those transfusions following his fourth chemo cycle, none of them provided any lasting relief beyond that specific day.

ruggedfox11, I am so incredibly relieved to hear some good news from your side! Regarding the sepsis issue, honestly, it blows my mind that they would think it’s a smart move to room a patient fighting sepsis right next to someone with a compromised immune system. It just seems fundamentally flawed.
When my dad was hospitalized, they put him in a room with a guy suffering from pneumonia. That individual actually refused treatment and checked himself out pretty quickly, but I was still sitting there in absolute terror, praying my dad wouldn't catch pneumonia on top of everything else he was dealing with. Luckily, he didn't. I’m choosing to believe your husband will have that same kind of luck. Either way, I’m pulling for you both—go show that monster who's boss!

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I’ll admit, I kept my mouth shut about quite a few things just because I didn't want to offend anyone and risk jeopardizing the quality of care my dad was receiving. We were fortunate enough to get him on the right treatment plan almost immediately after the diagnosis, but getting to that point took over six months of waiting. He was incredibly patient through it all, mostly because he didn't realize just how serious things actually were. Honestly, I refuse to play the "what if" game—wondering if he’d still be with us today if we had caught this six months earlier doesn't change anything. No amount of mental gymnastics can bring him back, but it doesn't change the fact that the system is fundamentally broken.

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This goes to the heart of our collective mindset, and honestly, it isn't just limited to healthcare—it’s baked into my own profession and pretty much every other sector too. Everyone is incredibly bold when they're talking; you hear endless "we should do this" and "that ought to happen," but the moment actual movement is required, everyone suddenly becomes terrified of stepping on toes. I’ve found myself in several situations within my own field where we truly needed to spark a "revolution" and take issue with the Department of Health. I even went as far as drafting the formal complaints myself. My colleagues were all right there, cheering me on and giving me pats on the back, but the second it came time to actually sign those documents? I was standing there entirely alone. Because, let's face it, nothing ever changes when it's just one person complaining. If hundreds or thousands of us spoke up, it would be a completely different story. There are a handful of doctors out there whom it is widely "known" are more butchers than medical professionals; they really ought to be fired and stripped of their licenses, but if anyone bothers to contact the Department of Health, you won't find a single person who filed a complaint against them. It’s not because there’s some grand conspiracy at play—it’s simply because, in reality, nobody ever actually speaks up!

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Honestly, it’s infuriating. You have people playing games with someone who is confused, let alone a patient for whom every single second counts. It turns out we spent all that time waiting, and my father—who passed away two months ago—would only just be getting his turn for certain tests right about now. We ended up pulling strings just to figure out where we stood, even though I’ve always personally despised being that kind of person. But at that point, you don't have a choice. Dad would have died without us knowing why. Sadly, in our case, none of that maneuvering actually helped in the end, but at least we tried to fight against the beast. It is blindingly obvious that the entire system is broken. You simply cannot wait six months for a scan that might be critical to diagnosing such a devastating illness (specifically a CT scan)!! And you certainly can't wait a month or two just to start chemotherapy! I recently needed an abdominal ultrasound myself due to suspicions of several serious conditions (thankfully, it wasn't any of them), and they scheduled me for February of next year! If I actually had one of those illnesses, I wouldn't have made it to February. Regardless, a system like this is a failure and needs to be challenged. ruggedfox11, don't feel bad about what you did.

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ruggedfox11, seriously, give yourself some credit here—you deserve a monument, not a reason to feel ashamed. You’re "guilty" simply because you want your husband to get the medication he actually needs, and you're willing to move heaven and earth to make it happen. So what if you are? If being "guilty" means fighting for him, then wear that label with pride!

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I just wanted to reach out and send my love to everyone still fighting this damn thing. I pop in to read your posts from time to time, but I have to be honest—it’s getting pretty hard for me. Every single time I do, I end up in tears. It’ll be nearly two months since we lost Dad, yet I still find myself rushing into his room first thing in the morning, half-expecting him to need something. And whenever an article about cancer pops up, I find myself clicking on it immediately, clinging to the hope that maybe, just maybe, it might help him... Anyway, even if I'm quiet, please know I'm thinking of you all and wishing you nothing but strength.

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Grace Ross20 said:Robin Diaz4😢
I am so incredibly sorry. I honestly thought your dad was stabilizing; even with his weakened immune system, it really felt like things were heading in a fixable direction.

Please reach out when the initial shock wears off. Take care of yourself and stay strong.

We were all holding our breath, praying for some kind of miracle, but it just wasn't meant to be...
The cancer simply took control and tore everything down in a matter of days. That’s the short version of what we read in the discharge papers. Toward the end of his chemo, it genuinely looked like he was turning a corner, but the moment they had to delay that last cycle due to his platelet count, the handwriting was on the wall.
I suppose I can find some small comfort in the cliché that he didn't suffer for long and wasn't in pain after the diagnosis. More time? Unfortunately, we weren't granted that luxury...

Regardless, this forum has been a lifeline for me. It helped me navigate the endless unknowns of this disease (of which there were far too many), kept me from falling prey to the countless charlatans trying to profit from our desperation, and allowed me to avoid draining the people in my life who just don't have the emotional bandwidth for this topic. Don't hold it against friends if they pull away during times like this (which happened quite often); they will help you whenever and however they can. And above all, please remember to look after yourselves so you don't end up physically ill from the stress (as I have). My heart goes out to all of you, and I truly wish you nothing but the very best.

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To my dear friends here,
my father passed away... It feels incredibly heavy, almost as if "someone up there" didn't give us even a fighting chance...
I want to say a sincere thank you to all of you—even if we’re technically strangers—for the advice, the offers of help, and the support when things got rough. You know better than anyone just how much that truly means during times like this.

To everyone else out there fighting their own battles, I am rooting for you with everything I've got!
I’ll pop back in once I’ve gathered enough strength to write something meaningful; perhaps then I can offer some help to someone else.
Sending love to you all.

ruggedfox11 said:It’s like he’s got lungs full of mucus he just can't clear out. Every breath comes with this whistling sound. Honestly, I'm blaming these erratic weather swings—both my little one and I have been stuck dealing with a nasty bug lately.

So, why did they release him? Was it because of the coughing?

Everyone at the hospital keeps giving me that look and saying, "Unfortunately, you understand the diagnosis... his immune system is compromised right now..." and then they just trail off. It's exhausting. He actually seems a bit better today, though. He's still struggling to cough up all that phlegm, though. 😢

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I guess I really am my father's daughter... his cough is honestly starting to terrify me because it sounds absolutely brutal. He ended up heading back to the hospital today. 😢

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ruggedfox11 said:Is your dad doing any better?

I honestly don't have much of substance to contribute right now... today has just been one of those days where nothing goes right. We'll just have to see how tomorrow unfolds...
How is your husband holding up?

I'm truly sorry to hear that, wearyskipper20... 😢

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So, Dad is doing a little better today. Honestly, God, this whole sickness is just absolutely revolting... I’m actually getting a bit nervous about even posting here, fearing I might somehow jinx things by speaking up too soon.

As for those platelets... they just won't budge. Regarding the patches, I've been using them from the very beginning; it was actually because of the persistent pain that we accidentally discovered the cancer diagnosis in the first place...

Things still aren't looking up... 😢