Posts by Linda Hill29

Hey everyone, Happy Easter!
I’ve got a situation, mostly involving my dad. Most of you have probably been through this already, so I’m hoping someone can point me in the right direction. My dad is going through chemo after surgery for stomach cancer; he’s on 5-fluorouracil and cisplatin. It’s hitting him hard. He’s been dealing with constant nausea and vomiting—mostly just bile at this point—for five days straight. We’ve tried Thorecan, Zofran, and Kytril, but nothing is working. He can't eat a thing; even the thought of food makes him sick, and I honestly don't know how we're going to make it through the rest of this treatment. He’s even starting to feel nauseous just pulling up to the Mayo Clinic or thinking about the IV drips. I heard marijuana can be really effective for nausea. Does anyone have experience with it, specifically with tea? I'm wondering about dosing and how well it actually works. I feel terrible even asking this, and honestly, a little embarrassed. But what do you all think?

Hey everyone.
It’s been a while since I checked in here. For a minute there, I actually felt like things were turning around. My dad finally got out of the hospital after two surgeries for stomach cancer, and honestly, I felt like we could finally breathe again. Like maybe the worst was over.
But chemo starts tomorrow. I haven’t been able to think about anything else, and reality is hitting me hard again. We have to fight, but I’m stuck in this loop of doubt. Should we stay put here for his treatment, or should we just pack up and head to Aviano right away? I’m terrified I'll make the wrong call. Are the chemo protocols even the same there? I want the absolute best for him, but our bank account isn't exactly overflowing. We’ll do whatever it takes, but I don't want to blow our entire future on a move that might be unnecessary. I can't afford to mess this up and live with the regret. It's exhausting having to carry this decision alone; my mom has her own long-term health issues, so she's not exactly a reliable sounding board. Dad is leaning entirely on me. He’s staying upbeat and optimistic, but he seems a bit foggy—like he’s only processing the good news and tuning out the rest. I just sit there, watching him, listening to him, soaking up every second of our conversations, while a voice in the back of my head keeps screaming: "I will do everything humanly possible to make sure you're okay."

I’m feeling pretty good today. Dad ate a decent amount, and I can actually see some strength coming back to him. He’s back to his usual moods and facial expressions, too. He’s talking and commenting more—he always loved a good conversation—so he’s starting to feel like his old self again. I’m feeling a bit more steady myself now that I’ve figured some things out and picked up a few things you all suggested might help.

Dad is heading to the hospital this Tuesday to have his stoma removed—that feeding tube connected directly to his gut (he hasn't been using it, but they left it there just in case). Has anyone dealt with this before? Is it a full-on surgery involving general anesthesia?

Thanks for the heads-up, feralwolf24. If something like that happens, at least I'll be ready; otherwise, it would've absolutely terrified me. Honestly, props to you guys for getting through all of this. You were brave, and you made it.

Linda Campbell, I’m thinking about trying Nutricomp, but I’m stuck on whether to get the regular version or the diabetic one. Which one did you go with? Dad isn't doing great on Prosure.

It’s become a habit of mine; constantly monitoring everything. It’s actually a relief to finally have people I can ask questions or just dump my worries on. I don't even know you people, yet here you are, helping me out. People can be surprisingly kind sometimes.

feralwolf24 and Linda Campbell, thanks so much for the advice. You both gave me actual, concrete directions, which is more than anyone else has managed.
It’s helping me figure out a routine for my dad. He’s stubborn as hell and wants to try everything under the sun. His appetite is great, but his capacity is tiny, so he needs constant breaks. We're struggling with that right now; he should be drinking and eating more, but he can barely manage less than a quart of fluid a day, and if he does, he can't eat enough to make up for it.
feralwolf24, I called that nutritionist you suggested. She gave me some tips, but we won't actually meet until next week once we get the discharge papers. Thank you—having that on the calendar helps calm my nerves a bit.
He stepped on the scale today; he's down 15 lbs since the surgery. It's brutal. He was a pretty solid guy before this. Now we have to prep for chemo, so I'll start making those beet and carrot juices.
Thanks again. You guys are really the only ones I can ask about this stuff. Everyone else is too vague or just gives me generalities. Trying to bulk up someone without a stomach is a nightmare, but I'm hoping we pull it off.

Reading through all this, your stories and advice really help me get by. But man, reading about someone losing their fight... it just hits hard. It’s depressing. I try to stay positive, but honestly, I can't help but break down sometimes. It's heavy seeing so many people fighting this same battle. My heart goes out to them.
I’m right at the beginning of this mess. I mentioned my dad's surgery before—he had a second one, spent a month in the hospital, and finally made it home today. Seeing him so happy to be back is the only good thing right now. Then I start thinking about what comes next... I tell myself it won't be that bad and everything will work out, trying to keep my head up. I don't talk to him much about the scary details. Sometimes I wonder if he actually realizes how bad it is, but part of me hopes he doesn't. He needs to just relax and save his strength. First order of business: fixing his diet. They removed his stomach, so he's lost a ton of weight and needs to bulk back up before chemo starts. The problem is, his capacity is tiny, he has to be picky, and no sugar allowed. If anyone here has dealt with nutrition after a total gastrectomy, could you let me know if artificial sweeteners or milk (like for porridges) are okay? What kind of high-calorie meals actually work? I'm looking everywhere, but the advice is all over the place. Might seem trivial, but knowing this would be a huge help.

I've been reading everything here, trying to keep up with everyone else. I'm just absorbing it all, desperate for any scrap of info. I need to be ready for what’s coming for my family. I joined a few days ago, but I'm just now finding my footing and figuring out how this whole forum works. My dad was diagnosed with stomach cancer about a month ago. He's already been through surgery to have his stomach removed, then complications, then another surgery... now we're just waiting. Honestly, the only thing keeping me sane right now is digging through this forum, hunting for anything that might help us down the road—like which oncologist to see, the latest treatments, or supplements to help his blood counts before chemo starts. Is the treatment at Los Angeles worth the cost? My head is spinning with questions. I'm genuinely impressed by how much you all know and how you even started an association. I'm still feeling pretty lost and trying to find where I fit in, but I need to get my facts straight first. I'll keep following your posts and hopefully, things will start making sense.
Best of luck to everyone and keep up the great work with the association!

I’ve been pretty much MIA lately. Life just got messy and I couldn't find a way out of the spiral. They finally sent Dad for a CT scan. Turns out there was a massive amount of fluid under his left rib cage, so they had to go in for a puncture. They drained almost a liter and a half. Great, I thought, at least we found what was causing the pain. Then, the next morning, they told me they found intestinal content in the fluid, so he needs surgery. They couldn't pinpoint exactly where the anastomosis is leaking. They’ve placed drains near the area of inflammation, a nasojejunal tube to drain bile and other fluids to keep the anastomosis dry, and a temporary stoma to handle his feeding. They're saying the anastomosis should close on its own since the leak is minor. He’s in Jil now, day three. No fever since the surgery, which is good. I wish he could stay longer, but I’m afraid they won't let him. Last time, it was only two days. Now we just wait for the anastomosis to heal. I don't even want to think about alternatives; I just have to hope they're right.
Thanks to everyone for the replies and the support—it really means a lot. Sometimes I check in late because there are moments when I feel like I'm drowning and I honestly don't know what to do. I don't know who to turn to, what to push for, or if I even have the right to. I'm just hoping for the best, and your advice helps more than you know.

My dad was diagnosed with stomach cancer about three weeks ago. He had surgery 15 days ago—they removed his entire stomach and the lymph nodes. The pathology report showed two nodes were positive. It’s terrifying, but honestly, the recovery itself is the nightmare right now. He actually seemed better immediately after surgery, but once they pulled the feeding tube, the drain, and the catheter (he still has one in his neck), everything just fell apart. First came the vomiting, then the constant hiccups. His fever was fine at first, but on day 10, he spiked to 102. By day 13, he was in agony with pain in his left shoulder and under his left ribcage. They gave him Dolantin, and at one point, he started shaking uncontrollably. They ran tests—ultrasound looks okay, chest X-ray is fine, things are moving through, but we're still waiting on blood cultures. They have him on antibiotics. Today is day 15, and he’s just completely wiped out. The sharp pains have subsided, but his left side is tender, and it hurts whenever he tries to move in bed. The doctors suspect sepsis and think something is wrong on the left side, but the ultrasound isn't showing anything. They’re wondering if there’s a leak at the anastomosis, but nothing is certain. It feels like they're running out of ideas while we just sit here waiting for answers. My dad is only 55; he’s always been this strong, steady guy, and seeing him waste away like this is brutal—especially since chemo hasn't even started yet. I don't know whether to push for a CT scan or something else. I'm terrified of a leak, sepsis, or peritonitis. I'm scared they aren't doing enough. This is my first time posting here, so I'm not sure how things work, but please, if anyone has been through this or has any insight, I need help. I can't stop thinking about how much he's changed; twenty days ago, he was perfectly fine, full of life.