It’s been over eight months since my dad passed, and I still find myself checking this thread every once in a while. To everyone here who has lost someone close, I am so sorry. And to those still fighting through it, I really hope you find the strength to keep going. We’re facing another battle now, and honestly, it feels even harder than what we went through with my dad. We just found out my daughter has a neurodegenerative disease. What can I even say? Not much. Life is just... brutal. I’m used to it being unfair to adults, but when it hits kids... it’s different. Sometimes, if I can even call it that, I feel thankful my dad isn't here to see this, because I don't think he could handle it. But I like to think he’s watching over us from above.
Just popping in to acknowledge this thread still exists... I spent so much time searching for answers here while my dad was sick. You all really helped me through it—Angela Wright and a few others especially. I honestly don't know if I would have figured half the things I did without this place. This thread was everything to me during his illness; it gave me a way to actually help him and access information I couldn't find anywhere else, mostly thanks to everyone sharing their own experiences. It’s been about three and a half months since he passed. I guess I feel some peace knowing I did everything I possibly could for him. It was advanced stage cancer, though, so there wasn't much more to be done. My eyes are blurring up just typing this, because I still can't quite wrap my head around the fact that he's gone. But I suppose that's just how it goes. Life writes these sad stories sometimes, but this community was a huge help during those dark, ugly moments. Angela Wright, thank you so much for always being here for us and for all the advice you give.
My dear dad passed away today. He’s gone to a better place, I guess. I just hope there’s no more pain where he is, and that he finally found some peace and quiet. Dad, I love you.
steeleagle152 said:My dad is getting worse. He’s barely eating anything. My mom was feeding him through a tube up to nine times a day until two weeks ago, and now he can barely manage four. He’s vomiting and coughing up blood. He was at the Mayo Clinic back on October 30th for radiation scheduling, but they still haven't called us back. I get the feeling they've just written him off. I don't know how much longer he can hold out like this, but I'm scared it won't be long. :'( He was diagnosed with esophageal and bronchial cancer at the end of August, and he hasn't even started treatment yet. They're just passing him around from one department to another without any real help. 😠
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I can't believe he hasn't started treatment yet. Like, why??? Maybe you should look into moving him to Springfield? They usually get the first round of therapy going within a week there. Once they admit a patient and run the tests, they move straight to treatment. Sure, waiting for radiation happens, but not for this long—maybe two or three weeks tops. Waiting this long is honestly way too much.
mistyjackal842 said:The main thing is that he's doing better. Is he able to talk?
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He can communicate, I guess, but he hasn't really had a voice for a few months now because of the metastases in his lymph nodes. The day they placed the feeding tube, just a few hours after the procedure, he had these horrific pains in his back. You could tell it was unbearable. It hasn't happened again since. Does anyone know if that’s linked to the tube being inserted, or what? It came on so suddenly; he was fine right after the procedure and then the back pain just started—a little at first, and then all of a sudden, it was intense. Just awful.
Is your dad doing any better? Did they end up putting in that feeding tube? Maybe he'll feel a bit more himself once they let him come home.
They put it in today, so starting tomorrow, they’ll slowly start feeding him through it. He’s got to stay at the Mayo Clinic for a few more days just so they can see how he handles the tube.
I really need some advice here... So, my dad's been stuck in the hospital for ten days now. He hasn't eaten a single thing. At first, they were worried about his lymph nodes acting up again, but he had a PET scan today and apparently, there’s nothing there—just heavy swelling, which they think is probably just from the last round of radiation. The problem is, he hasn't touched any food during this entire ten-day stretch. He gets an IV every day, but I guess it's not enough, because he's just getting weaker and sleeping more and more. The doctors decided he needs a PEG tube so they can feed him directly, but they've been stalling on actually putting it in for a week now. I have no idea where they're waiting on. Is that kind of thing something you can just buy somewhere? Because tomorrow is already Thursday, and I'm honestly terrified of what's going to happen if they don't get this done by the end of the week.
Angela Wright, I don't know much about that situation. Could you give me some more details? Jane Doe, my dad is dealing with that damn microcellular stuff too. It’s been about a year and three months since his diagnosis. Everything seemed fine for the first year, but lately, things have taken a turn. Even when he was first diagnosed, he had those spots on his lymph nodes that would basically come and go. It looks like the last round of radiation might have finished them off, but now his lymph nodes are so swollen he hasn't been able to eat anything for a few days. He's in the hospital now. They're talking about doing a PEG tube. Apparently, it's just a temporary fix to get him some nutrients since he can't swallow, at least until the swelling goes down enough for him to eat on his own. He’s being indecisive about the whole procedure, though. Jane Doe, it’s tough, but you just have to keep fighting. Fight every single day.
It’s getting harder and harder for me to keep checking this thread... Dad’s been stuck in the hospital after spending four nights in the ER over the last ten days. He’s dealing with abdominal pain, hasn't eaten anything in days, and he's just incredibly weak. He's on an IV right now while they run some tests. I guess I'm just hoping the results come back okay and that he actually starts feeling better.
My dad just got discharged from the hospital after finishing radiation on his lymph nodes, where they thought they saw some potential spots. A few days after his last session, he started feeling this pain in his left shoulder. Now, that ache is spreading from the shoulder all the way down to his chest—basically, the whole left side hurts, and he’s having trouble breathing sometimes. He says he feels like he's suffocating, like he just can't catch his breath. He’s already ended up in the ER twice, and both times they told him everything looks fine and there aren't any tumors where it hurts, but he's still in pain all along that side. Does anyone have any idea what might be going on?
mistyjackal842, I am so incredibly sorry. Please accept my condolences. The way doctors act sometimes is just totally unacceptable. There has to be some kind of accountability. It’s shameful, honestly—just unbelievable.
Look, I feel like I should chime in here because things aren't exactly great at Villa Brezovica either. My dad just finished his radiation and headed home, but his stay at the hospital was a total mess. First off, halfway through his treatment, they actually tried to kick him out. They basically asked if he could just go stay with someone else until he finished radiation. When he said he couldn't, they had the nerve to ask how that was possible since he has a daughter living in Washington, D.C. My dad refused to leave, so in the end, they ended up kicking another guy out of his room. Why? Apparently, so a friend of the doctor's could have a spot. The guy even told them that directly. Then, midway through the radiation, something weird happened. It felt like a bone popped out right under his chest, where the ribs meet—you can actually feel it. He asked the doctor about it several times, but they just gave him this blank "we don't know" response and left it at that. No follow-up tests, no nothing. Just ignored it. Third thing: they irradiated his neck because of some lymph node issues he found himself. He had to practically beg for tests because they had already cleared him, insisting there was absolutely nothing wrong with his neck. They were so adamant that everything was fine, but it turns out, it definitely wasn't. Then, during the radiation, he felt something even larger on his neck. Again, they wouldn't do anything about it. Their excuse was always, "Maybe it's from the radiation, maybe it's this, maybe it's that..." They basically told him they'd figure it out in three weeks when he comes back, but they weren't going to deal with it now. It’s just pathetic how inhumanely they treat patients. When you see stuff like this, you start losing hope. You get this feeling that even the doctors themselves don't think there's much they can actually do. They should all be ashamed of themselves.
Rachel Wood27, I’m so glad to hear that! We actually have some good news on our end too (same microcellular stuff). Just a few days ago, my dad was basically bedridden. He could barely make it to the bathroom, and mentally, he was just... somewhere else. He’d spend an hour just staring blankly at a single spot on the wall. Now? It’s like a different person. He’s walking, eating well, his mood is way better—he even went out for coffee. Total turnaround. The only thing is his voice hasn't quite come back yet, and there's a bit of a cough (though nothing constant). I guess we'll see if the radiation helps clear that up, too. I'm relieved.😍
vividsailor7 said:He was definitely discharged with diagnoses and therapies you didn't mention here.
My dad was sent home after being diagnosed with malignant lymphoma in his neck. He’s already had Taxol and is scheduled for radiation on his neck in three weeks. The doctor mentioned the scintigraphy results looked fine, and we were discharged right after that. We got the paperwork at our house, and it basically just says what I wrote above. We can't get a hold of his doctor right now since she's traveling, so I'm asking you—or anyone who actually knows their stuff—to help me make sense of these scintigraphy findings.
graniteorca42 and Rachel Jones8, thanks for the replies, though I guess I’d still love to hear what Dr. vividsailor7 or Angela Wright think if they happen to see this. Now you guys actually have me worried. These were the results from his bone scan, and his doctor told him there's nothing wrong with his bones—no objective reason at all for him acting out like this. Based on the scans, it looks like it only spread to one side of the neck, and the doctor says that isn't much to worry about. He's had way worse test results than this and hasn't been nearly as mentally unstable. I just don't get it...
Since I'm already here, I might as well ask about something from my recent discharge papers that makes zero sense to me:
Pathological radiopharmaceutical uptake is visible in the area of a large lesion on the left humerus. The appearance of the clavicle and ribs is non-homogeneous, with focal pathological radiopharmaceutical uptake of lower intensity in the posterior aspect of the 9th left rib. Increased radiopharmaceutical uptake is noted in both acromioclavicular joints, both scapular coracoid processes, and both knees, which is most likely degenerative in nature.
I don't understand any of this, and honestly, it sounds pretty terrifying. I could use some help making sense of it.
So much sad news lately... My heart goes out to everyone here. I don't post much, but I read everything, so I figured I’d share something a bit more hopeful. As I mentioned before, my dad has small cell lung cancer. He got the diagnosis a little over a year ago. The prognosis was terrifying. None of his doctors would give a definitive timeline, but reading stuff online... it was grim. Just a few months, they said. Through all of it, he’s been doing great. He’s gone through plenty of chemo and scans, and despite a few rough patches, he’s actually been doing really well. Even his doctors and everyone around him were shocked by how good he looks and how well he handles the mental side of things. There were those bad stretches, though. Once he dropped about 30 pounds, and once he lost his voice—the doctors told him it wouldn't come back, but to their surprise, it did. Through all that, he stayed mentally tough. He never gave up. He didn't talk about the cancer openly; I think he knew, but maybe subconsciously he just didn't want to dwell on it, let alone discuss it. I wanted this to stay positive, but things have taken a turn. When he went in for his latest checkup, they ran some tests, adjusted his treatment, and sent him home. He felt fine then—really, he felt solid. But that night, he started coughing so hard he could barely catch his breath. That coughing fit made it impossible to breathe, so we ended up taking him to the ER at Mercy Hospital. The doctor ran some tests and basically sent him home with a comment like, "Look, sir, most people with your condition only get a few months, and you've been hanging in there for a year already. What more do you want?" And that’s when everything changed for my dad. To make a long story short, he insisted on staying in the hospital, and it turns out the cancer had spread to his neck lymph nodes. They changed his therapy, but he’s just... different now. Mentally, he’s completely collapsed. He keeps saying he's a lost cause. He’s lost weight again, hardly eats, says nobody understands him, and feels like he's just wasting away. He spends his days staring at the ceiling. He's terrified of everything; he won't even go to the bathroom or shower by himself, not even with my mom helping him. It’s awful. It’s unbelievable how much someone can change in ten days. The doctor warned us that if he stays bedridden, his muscles will atrophy and he'll end up in diapers. He knows that, too, but he just shrugs. I don't know how to snap him out of it when he’s lost all will to fight. I still believe there’s some hope left, because he’s beaten the odds so far. It hasn't been easy, and he was such a fighter—he really stood up to this disease—but now, because of one rude doctor's comment, he’s fallen so hard. Some people in medicine are just jerks. Not all of them, obviously, but most. How can I help him? The point of this post was supposed to be that no matter how dark the diagnosis looks, there is still hope. Maybe not a huge amount, but there is. My dad was given a few months, and yet he's been here a year, and for the most part, he was doing great. I’m pretty sure he can still pull through; he just needs to find the strength to stand up and fight again.
stormytinker4 said:I believe you, since it hasn't been doing much for my husband yet either 😢 ... what dose was he taking?
First it was 2x1, then maybe 2x2 or 3x2, I can't quite remember. They even tried dissolving it under his tongue, but nothing worked. The cough is just getting worse by the day😢 He tried taking Codeine again for two days, but stopped because it’s useless. Now they've started him on Methylprednisolone, 32 mg, twice a day, via IV. Now I'm just waiting for the swelling to come back.😢 He's still in the hospital. The cough is only manageable when he's lying down. If he sits up, stands, or heaven forbid tries to walk or talk, it's just brutal. He lost his voice again, too.😢 It's crazy how everything can flip in a single day. A few days ago, he was doing great—really great. We were out at the beach, walking around town, just living life. Then, out of nowhere, that coughing fit hits one day, and it just keeps going until he ends up like this. It's enough to drive you mad. Anyway, I posted here recently about how the upper left lobe of his lung is affected, and there was a 3mm nodule seen on the right side. I was asking what a nodule meant back then. Well, that nodule is still there, but since all the other results look okay, they think it might be the target. We'll see next week. I hope it isn't, but if it is, I don't know what else would explain why he's in this state.
Dance sky, my dad’s been sipping on Codeine for months now and honestly, nothing is working. The doctors seem pretty baffled; they kept telling me they’ve never actually had a patient who didn't respond to it, but I guess my dad is just that special case. I’m thinking about taking him to see a holistic practitioner, because if this cough doesn't settle down soon, he’s probably going to lose his mind.