Posts by cosmicviper76

Lisa White54 said:When my husband was first diagnosed three and a half years ago, the doctors had basically written him off. He had a tumor about the size of a man's fist that had invaded his trachea and the right bronchus. It was brutal—he couldn't stop coughing, he was struggling to breathe, and he was coughing up fresh blood. It was a nightmare.
The chemo and radiation were incredibly hard on him. We dealt with everything: the pain, the nausea, the diarrhea, mouth sores, high fevers... honestly, the whole works. But we just took it one step at a time, tackling every single symptom as it hit us. One hurdle after another.
As for the bureaucracy? There was absolutely nothing I could do to change them. On top of all the physical toll the illness took, they made things unnecessarily difficult. Instead of actually trying to solve problems, they just stood in the way—which is absurd, considering that’s literally what they get paid to do!
No, they aren't just inefficient; they are cold, heartless bureaucrats who seem to think illness is something that only happens to other people. But who can say for certain they’ll wake up healthy tomorrow?
If there is one thing I've learned, it's that when you're fighting a disease, nobody is going to come to your rescue except your family.
To make sure my husband got what he needed, I always had to stay one step ahead of the doctors. I'd jump in and present them with a finished plan before they even knew what hit them.
And now? My husband is doing great. He looks good, though he gets some bone pain occasionally (which, along with some irritability, I attribute to the changing weather). He moves normally, drives his car, goes fishing... Honestly, if you didn't know his history, you would never guess he ever had cancer. And he was supposed to be a lost cause!

slyseal28 said:My husband's situation is incredibly tough right now. The illness is practically incurable because there isn't any chemotherapy out there yet capable of destroying his specific sarcoma. To make matters worse, the location of the tumor makes everything significantly more complicated; his primary sarcoma is located near the pericardium.

We hit our low points, sure, but we aren't throwing in the towel. We are doing absolutely everything in our power just to squeeze out a little more time—just one more day, which feels like everything to us. We’ve both made a pact to fight this until the very end. Even if we do lose this battle, we intend to do it with our heads held high.

Beyond the disease itself, we're dealing with the headache of bureaucracy. It often feels like the system pre-judges critically ill patients, essentially writing them off because treating cases like ours isn't "cost-effective" for them.
But honestly? They won't shake us. We keep fighting, and we refuse to let them give up on us.

For me, working with the association is what pulls me out of the darkness and depression; it gives me the momentum I need to actually get moving. I've met people through this who truly inspire me—people who reached out with unconditional support and friendship during my loneliest moments of despair. Together, we’re slowly chipping away at a massive project designed to help all of us. And even if things don't turn out exactly how I’d hope, there will be something left behind after all this grief and struggle. Just knowing I’m part of something bigger gives me the strength to keep going.

So, please, don't give up without a fight. You aren't in this alone. 🙂

Melissa Stewart said:No matter how bleak or utterly hopeless things might seem, we simply cannot afford to throw in the towel.
On Wednesday, August 20th, while we were over at the Salad, I happened to meet two kids battling osteosarcoma. One little girl was so withdrawn that it felt intrusive, almost rude, to even try and strike up a conversation. But then there was this boy—just a total ray of sunshine. Once he hopped out of the doctor's office with a grin on his face and his mom confirmed his results were clear, I just had to go talk to him. Honestly, I don't think I've ever met a child so incredibly well-versed in their own medical situation. He’s only about 12 or 13 years old, yet he was tossing around medical terminology like a seasoned attending physician. He’d been dealing with osteosarcoma in his knee, underwent surgery, and has been through the ringer with chemo. He told me he’s spent about 18 months living in the hospital. It’s one of those moments that really makes you pause and reflect.
The friend who was driving us mentioned he’d been hanging out at a cafe while waiting for us to get ready—which is exactly where he ended up sitting while we were running late.
They mentioned there were metastases involved too. I couldn't catch the exact locations because, well, I wasn't the one sitting in that consultation, and you can't exactly grill a patient about those details—let alone his parents. It’s just one of those things where you're left hovering in the dark.
The most critical thing is that he pulled it off—but now comes the real work: staying on top of all those follow-up appointments and regular checkups.
Whenever I find myself spiraling into a dark mood, all I have to do is picture him—just standing there with that grin on his face, holding nothing but a single rib.
He handed his sister whatever it was he received after leaving the doctor's office.

Nancy Thomas18 said:well, I suppose I'm doing alright as long as I'm still breathing...

Kimberly Green23 said:My stepfather unfortunately lost his battle today. If there is any solace to be found, it’s that he didn't have to suffer through a long, drawn-out struggle. We can spend our time debating whether he could have dug deeper to find more strength for the fight, but that isn't really the point—he simply reached his limit, lost the will to keep pushing, and surrendered to fate. He wouldn't let us pull him back from that lethargy, no matter how hard we tried. I want to extend my deepest thanks to Melissa Kim45 and Linda Wright5 for their incredible support, as well as all the other women on this forum who offered such helpful advice. I'll be keeping an eye on your updates, and if I can offer any meaningful insight along the way, I certainly will.

Jerry Thomas14 said:Hey. Just realized I’ve got a real issue on my hands. I’m hitting the sack around 3 or 4 in the morning every single night, then sleeping straight through until noon or 2 PM. Even with all those hours, I feel absolutely wiped out all day long. Is it because my internal clock is totally trashed? I wasn't like this before... and it's starting to get annoying. How do I fix this?

thanks.

Melissa Stewart said:Thanks so much! I’ve been such a scatterbrain—I actually already visited that page and signed myself up. I think I’ve spent way too much time digging through everything over the last two weeks, and now my brain is just mush from all the reading.
I just printed everything out, so I'm officially moving into action mode starting tomorrow.

Melissa Stewart said:I was reading through some older posts and saw that you guys were out at Central Park in mid-July signing that petition, and slyseal28 mentioned you could actually get the form sent over via email. If that’s still an option, please, could someone send it to anita.kukuruzovic@gmail.com or anita_pz@gmail.com?
Even though my DA status is pretty minimal, I am prepared to go door-to-door, town to town, and apartment to apartment. I can't sit idly by after hearing that disgraceful comment from that monster over at Medicare—suggesting that certain patients just need to die. Of course, his precious little statement obviously wouldn't apply to his own family or those "cowardly" politicians sitting in Congress.
Forgive my bluntness, but I am absolutely livid. I’m a "newcomer" here, and it’s terrifying to realize I'm only just now discovering the heavy truths that some of you have been carrying for years.

Melissa Stewart said:It is absolutely infuriating how they handle annual leave! It’s like the whole world just grinds to a halt. If only they showed that same level of urgency when someone is actually sick! To all the fighters out there—you are spot on. Who are we even supposed to be angry at? They’ve kept us hanging in limbo for so long.
But here’s the update: we finally dropped off the tissue sample at the Salat clinic last Wednesday, poked and prodded them with phone calls a few times, and the results are ready today. We’re heading in to pick them up tomorrow, and then we have our 1:00 PM appointment with the doctor over at Salat.
We waited forever for this moment, but now that it’s here, we’re feeling this MASSIVE wave of fear regarding the diagnosis.
There’s no avoiding it anymore; we finally have to face the music and start the fight.

slyseal28 said:We’re stuck waiting for medication again. Treatment was supposed to kick off on August 14th. But because the holidays hit right at the wrong time (August 5th and 15th), everything just fell apart. We had it all mapped out, then rescheduled for Thursday, August 21st. But now? The clinical trials committee of a US hospital hasn't cleared all the cases—ours included—so even Thursday is looking unlikely.

The excuse they're giving us? A staffing shortage due to people being on vacation. Honestly, how do you explain to a hospital board that cancer doesn't take a summer break?

So now the treatment is two weeks behind schedule, and who carries the weight for that delay? Nobody, except the patient.

That statement from the Minister claiming that solutions for expensive drugs can be sorted out in a week? It’s just plain false.

I've already reached out to the press.

slyseal28 said:It’s heartbreaking... I actually caught an article about this in the Free Press...

My dear friends, absolutely nothing is going to shift unless we all find our voices and speak up together. It isn't enough to have two or three people out there trying to kick up a storm. This requires a collective effort from every single one of us. I am asking you, if you haven't already, please sign our petition and mail it directly to the Patient advocacy group's address.

When we organize rallies or actions, show up. Bring your family, bring your friends—bring anyone you know. Real change only happens when we become too persistent to be ignored.

Lisa White54 said:My husband went in this past Friday (08.08.) for a CT scan of his chest and abdomen at our local general hospital. Honestly, what he went through was nothing short of traumatic.
They kept badgering him about his previous medical records, but all we had were the discharge papers from the specialized clinic in Jordanovac, because that's where all his actual imaging is stored. We’ve never even laid eyes on the original files. His last CT was done two years ago, which showed everything was fine, but as far as this facility is concerned, we effectively have zero history.
But look, he’s my husband—he just handed over exactly what he had: those discharge summaries.
And then? He got absolutely blindsided by the staff at the CT department. It was like being caught in a crossfire. They told him he should be getting treated at the specialty clinic, that he should go there for his scans, and they practically questioned his right to even be there or whose recommendation he was following! (For the record, he was sent by an internist based on a pulmonologist's opinion from the specialist clinic!) It was all delivered through shouting and condescension, only for them to drop this bombshell at the end: "Sir, you are extremely ill."
Who gives them the right to say something like that? My husband is a complete wreck now. He’s spiraling because he thinks they saw something terrifying and that he’s in much worse shape than we realized, simply because they spoke to him with such grim certainty.
Since when do they get to decide who is "allowed" to have a CT scan? If we can't come here, where are we supposed to go? We’ve lived in this community our entire lives.
And really, what gives them the right to pick fights with patients who are already battling serious illnesses? Did they skip the entire module on patient psychology in medical school?
I mean, seriously, where is the decency?..
And to top it off, the results won't be ready until Friday the 15th, which is a holiday! A feast day!
So, I guess we'll be waiting until Monday the 18th!
Does anyone else know of a place where you wait ten whole days just to hear the results of a CT scan?

Megan Rivera98 said:I just wanted to say thank you all for the support..
My dad is such a fighter... he’s always been the jokester of the family and a longtime truck driver...
And honestly, even after finding out about the metastasis just the other day, he climbed right back into his rig the very next morning. It seems like being behind the wheel is exactly what keeps him going.
Sending love to everyone..
And my heart goes out to those of you who have already lost someone dear to you.

Megan Rivera98 said:I’m new to this forum...
My dad had surgery for colon cancer about nine years ago. Two years back, things started spreading to his liver, and now it's hit his lungs too.
We got the latest scans today, and they confirmed the metastases in the lungs, along with the existing ones in the liver and colon...
I'm honestly just a shell of a person today. I felt the need to come here and share this with all of you...

Kate Watson53 said:I recently lost my dad to pancreatic cancer. It was an exhausting, brutal nine-month battle. Everyone here knows that specific kind of helplessness—that feeling when you’d give anything, even your own life, just to take away their pain, but you can't. To everyone still in the thick of it right now: I am sending you all the strength in the world. Please, hang in there and fight for them, because miracles really do happen. They told my dad he wouldn't even make it out of the hospital, yet we managed to have eight more beautiful months together. Every single day felt like a small miracle. Even though he's gone, I truly feel his presence watching over me.

slyseal28 said:I have to admit, I was genuinely taken aback by how calm everyone stayed during the studio session. It was surprisingly composed. My only real regret is that I didn't manage to dig deeper into the whole issue regarding medications that aren't covered on the approved list. It’s one of those bureaucratic hurdles that feels like trying to navigate a maze with no exit, and I really should have pressed the point.

I couldn't help but feel that the moderator was being a bit too soft there... It’s almost like watching a referee in a championship game decide to let everyone just play through the fouls instead of actually enforcing the rules. You expect a certain level of firmness to keep things from spiraling, but this felt more like a polite suggestion than actual leadership.

We certainly gave the Department of Health a run for their money. I can only hope they took the hint and realized we aren't exactly pushovers—and we certainly won't sit idly by while they try to treat us like a bunch of amateurs.

dustyranger11;15091358 said:Hey there. My dad ended up in the ER today—which was actually a shock, considering how quickly they took him in—because he started choking. It was either some kind of tumor wrapped around his neck or just an overwhelming amount of nasty mucus blocking his airway. They had to perform an emergency tracheotomy immediately. The doctor mentioned he coughed up a massive amount of phlegm, and now they suspect pneumonia might be brewing because of it. I’ve been waiting on the lung scans, but the doctor explained the current images aren't fully conclusive since they were taken right before the procedure; they’ll run more imaging tomorrow. There is definitely inflammation present, which showed up in his blood work (we actually went to the ER yesterday because he was having stomach pains, and after I did a little digging through his lab results online, I realized he already had some sort of infection). They’ve started him on antibiotics, inserted a catheter, and told us he needs to stay strictly bedridden for a few days. That part actually worries me; he’s always been such an active guy, and I honestly don't know if he'll bounce back as quickly if he stays stationary for this long. Plus, I'm terrified he's going to pull out all those wires and tubes hooked up to him. The staff said I should only visit briefly because he needs total rest, but if he hadn't made it to the hospital today, he surely would have suffocated. I’m dreading what my favorite doctor 😠 will say during his rounds tomorrow,
I can already see him grumbling about why my dad didn't just go to Morocco instead. Honestly, though, the doctors on duty today and yesterday were fantastic; they really exceeded my expectations.

Just being by his side is enough. The most important thing is that the medical team did their job effectively.
My dad isn't exactly thrilled about being hospitalized either; he gets so incredibly cranky whenever we have to bring him to the hospital, but I'll do whatever I can to make things easier for him.
Just focus on being there for him as his support system, and leave the rest in God's hands.
Wishing you all the best—stay strong!

silentfalcon6 said:Hey everyone...

I’m honestly sitting here just crying my eyes out and I can't seem to catch my breath... My heart is absolutely racing and I just feel so incredibly helpless right now. I don't even know if there's something wrong with me, like maybe it's my own self-esteem or something, but I'm spiraling. So, my boyfriend invited me to join Facebook, and even though I usually hate all that social media stuff, I kind of got sucked into it and ended up reconnecting with some old friends from high school. But then, while I was scrolling through his profile, I saw this poll he posted where people could vote on whether they'd go out with him or not... As I'm typing this, my heart is practically jumping out of my chest. I seriously cannot believe this! And the worst part? Two people actually voted yes. I’m assuming it was just his female friends voting, because you can't participate unless you're on his list and added as a friend.😢...
I mean, like... wtf??? I have no idea if I should even bring this up to him, or ask him straight out if he did this specifically to make me jealous. Part of me wishes I had never even seen it, wished I hadn't joined Facebook at all, but now this whole thing is just haunting me... Like, someone should just adopt him as a pet or something... and honestly, I get this nagging feeling that he's just desperately fishing for attention from other girls on there... I don't even know what else to think about it all.

rapidbear8 said:I posted here once before just to vent about the heartbreak of my father's illness (lung and brain cancer)... he lost his final battle on July 15th😢😢😢 and it was only six months after we first found out how devastating this diagnosis really was...

Linda Wright5 said:My dear friends,
it is with a heavy heart, though I find myself at peace, that I let you know my sister passed away quietly in her sleep last night.
She was a true fighter, and I am profoundly proud of her.

I will continue to follow the discussions here and offer help whenever I can.

Please stay strong, everyone, and just keep moving forward with courage.