Support for families dealing with cancer and other serious illnesses (Part II)

James Patel79 said:Dear fellow forum members,
I wanted to take a moment to thank you all for every single post, for the help you offer one another, and for every kind word and ounce of support shared here.
Every so often, almost without realizing it, I find myself drifting through this forum, picking up a bit of advice and trying to apply it to my own life.
I’ll be the first to admit that I can be quite lazy and stubborn; I know I should probably put more effort into integrating alternative therapies and dietary supplements, but after seven years of fighting my traveling companion—liposarcoma—I’m just plain exhausted.
In any case, the genuine care you show one another is a significant thing; it heals just as much as any other medication or treatment could.
So, thank you for that.

Keep fighting the good fight against this beast and don't back down.

Sometimes I honestly feel like everything is just spiraling out of control. Instead of things improving for my father-in-law, it seems like they’re actually getting worse. It’s already been three weeks since his surgery.
That specific muscle—the pyloric sphincter—is spasming and blocking the food flow. They tried to relax and dilate it, but it doesn't look like anything worked. My mother-in-law was visiting him yesterday and overheard something about a bacterial infection (I’m assuming one of those hospital-acquired ones) being the reason behind the diarrhea. He’s even had to start using adult diapers. I called him yesterday, but he could barely hold a conversation because he told me he couldn't even grip the phone properly.😢.
I have this sinking feeling that we’re just digging ourselves into a deeper hole. The helplessness of not being able to do anything except badger the doctors to fix this is absolutely killing me. They mentioned that if it doesn't relax after two or three more dilation procedures, he might need surgery. Given how weak he is right now, I genuinely don't know if his body could handle another operation.
What should I do?

Amanda Miller69 said:Sometimes I feel like everything has just gone completely sideways. Instead of my father-in-law getting better, things seem to be spiraling. It’s already been three weeks since the surgery.
That muscle—the pylorus sphincter—has cramped up and is blocking food from passing through. They tried relaxing and dilating it, but nothing seems to be working. My mother-in-law was with him yesterday and overheard something about a bacteria infection (I assume it's one of those hospital bugs) causing the diarrhea. They’ve even had to put him in diapers. I called him yesterday, but he could barely talk because he said he couldn't even hold the phone in his hand😢.
I honestly feel like I'm just digging a hole. The helplessness of not being able to do anything except badger doctors to fix this is killing me. They told me if it doesn't relax after two or three more dilations, they'll have to go back in surgically. He's so weak; I don't even know if he could survive another operation.
What am I supposed to do?

The absolute worst part is that feeling of total impotence—knowing you can't actually help, so you just end up running around after doctors hoping they can somehow pull a miracle out of their hats. It was exactly the same with my mother-in-law. In the end, my father-in-law ended up fighting with his sisters and the medical staff because he felt powerless, and frankly, the doctors couldn't solve every single issue either. There was always something new. We even started wondering if the doctors made a mistake somewhere along the line because things weren't improving at all, even though she caught it relatively early. It wasn't ideal, but she had the surgery followed by chemo and radiation as a precaution... or so they said.

It's such a sneaky, insidious disease. Just stay strong... I can't offer much help, but I certainly know what you're going through.🙂

Angela Wright everything I managed to dig up online mentions some kind of da Vinci robot used for prostate cancer surgeries over at the Mayo Clinic, and now they're talking about moving toward the large intestine... I really hope that's not what's happening, and that there's some new treatment out there that people just haven't heard about yet.🤷

Amanda Miller69 said:Sometimes I feel like everything has just gone completely sideways. Instead of my father-in-law getting better, things seem to be spiraling downward. It’s already been three weeks since his surgery.
That muscle—the pyloric sphincter—has clamped shut and is blocking food from passing through. They tried relaxing and dilating it, but it looks like nothing is working. My mother-in-law was visiting him yesterday and overheard something about a bacterial infection (I’m assuming a hospital-acquired one) causing the diarrhea. They’ve even put him in diapers. I called him yesterday, but he could barely talk because he said he couldn't even hold the phone in his hand😢.
I feel like he's just wasting away. It kills me being this helpless, unable to do anything except lean on the doctors to fix this. They told me if it doesn't relax after two or three more dilations, he’ll need surgery. He's so weak, I honestly don't know if he can handle another operation.
What should I do?

I can't believe this!😲
You’re going to have to get on their backs and stay on them until they get this man upright again. Is there any way for him to take probiotics, or does he just vomit everything up? Of course he’s wasting away, man—he’s losing electrolytes, food isn't staying down... I really hope he’s hooked up to an IV, for God's sake...
Life is just brutal... you try to rush everything to prevent complications, and then something this retarded happens. Unbelievable!

Fiza, I'm so sorry things aren't looking better yet. Can your father-in-law still handle that current food he's on? I deal with Crohn's, so I totally get how brutal it is when you can't eat anything and everything just passes right through you. I used to be stuck on IV drips for up to two weeks at a time where I wasn't allowed to swallow a single thing. They were throwing everything at me just to keep me from crashing even harder—I even got some heavy-duty antibiotics through the IV. Back then, they told me if that didn't work, nothing would. Honestly, I felt better after just the first bag. I know this stuff is pricey and hospitals hate paying for it, but maybe ask about that specific treatment.

Hey,

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.

Angela Wright said:I honestly can’t believe this!😲
You'll practically have to ride him and give him a massage just to get him back on his feet. Is there actually any way for him to take probiotics, or is he really just vomiting everything up? Of course he's digging deep, man—he's losing electrolytes, food won't stay down... I really hope they have him hooked up to an IV, for heaven's sake...
Life is just one mess after another... you try to rush everything to prevent things from getting complicated, and then something this ridiculous happens. Unbelievable.

They’re giving him an IV or feeding him Ensure directly into his stomach. He was throwing up all solid food because there was simply no passage further down. What kind of probiotics could you even give him in that state?
I finally managed to corner the doctor today. He mentioned that they "cleared" that muscle twice, and now there's a passage. They'll check again tomorrow, and if nothing changes, they’ll look into surgery.
Some doctor—who is usually quite rude, by the way—told me yesterday that his electrolytes and blood work are looking fine.

Linda Patel21 said:Zachary Howard2, I am so sorry you're still going through this. Can he handle liquid nutrition? I live with Crohn's disease myself, so I know exactly how miserable it is when you can't eat anything and everything just passes right through you. There were times I was stuck on IV drips for two weeks straight because I wasn't allowed to swallow a single thing. They gave me pretty much everything under the sun just to keep me from crashing completely—even some heavy-duty backup antibiotics via IV. They told me if those didn't work, we were out of options. Honestly, I felt better after just the first bag. I know that stuff is expensive and hospitals hate handing it out, but I don't recall the exact name. It might be worth asking about.

Liquid food is fine, and he’s drinking water normally too; it’s just solid food that causes issues.
I'll ask about the nutrition, even though they have already been administering some antibiotics through an IV.
It seems strange that they have him in isolation. The nurses say there's a reason for it, but they won't give me any specifics, and in all the chaos, I completely forgot to ask the doctor. I suspect it might be some kind of bacteria (likely a hospital-acquired infection).

I am so sorry you're dealing with such a difficult illness, but hang in there. You are strong.

Amanda Miller69 said:Liquid food seems okay, and he’s drinking water fine too; it’s just solid food that’s causing issues.
I’ll ask about it, even though they’ve already started him on some antibiotics via IV.
It feels weird that they have him in isolation, too. The nurses say there's a reason for it, but they won't tell me anything, and I'm such a dummy—I completely forgot to ask the doctor. I’m guessing it’s some kind of bacteria (likely something hospital-acquired).

I am so sorry you’re going through this struggle, but hang in there—you are incredibly strong.

Go to a health food store and grab some probiotic powder so they can give it to him. Those antibiotics are going to wreck his system along with the diarrhea. He really needs to boost his immunity, too. He can definitely take Prosura or Ensure. Also, bring him some homemade food from home... you know as well as I do, if he gets totally depleted and slips into cachexia, then all the oncological treatment won't matter. All that rushing to get an earlier surgery will be for nothing if he doesn't have the strength left.

Nancy Lee said:Hey there,

It’s been over 8 months since my dad passed, yet I still find myself checking this thread every once in a while.
My heart goes out to everyone who has lost someone dear, and to everyone currently in the fight—I wish you all nothing but strength to keep pushing forward.
Unfortunately, we’re back in the trenches, and this time the battle feels even more brutal than it was with my dad. We just found out my daughter is dealing with a neurodegenerative disease. What can I even say that makes sense? Nothing. Life is just incredibly harsh and unforgiving. I’ve grown used to how ruthless it can be toward adults, but seeing it hit a child... it's different. Sometimes, if I can even call it that, I feel a sense of gratitude that my dad isn't here to witness this, because I honestly don't think he could handle the weight of it. But I know he's watching over us from above.

Oh, dear Nancy Lee, I truly don't have the words...😢
I know that absolute despair and terror you feel when your child is suffering.
Hang in there, and please keep posting if you need a shoulder to lean on. This thread is a safe space for all those heavy diagnoses.

*Lilly*, I'm so sorry... us adults have a rough enough time dealing with sickness, but nothing hits harder than when it involves kids. From what I've been through, it’s not all doom and gloom. My start was absolutely brutal. They didn't even think I'd make it out, but here I am ten years later doing relatively well. I haven't missed a single day of work because of this; people who don't know what I'm actually fighting don't even believe me when I tell them. Obviously, I have to be careful and I've had to give up certain things. I just wanted to say that I truly believe your little one is going to be okay. I'm rooting for you guys with everything I've got.🙂

Angela Wright said:Just give him some probiotics in powder form—get them and mix them in. Antibiotics are going to wreck his system along with the diarrhea. He really needs to boost his immunity, too. You could also try giving him Ensure or Prosura. And please, bring him some blended homemade food... you know as well as I do that if he completely runs out of steam and falls into cachexia, all the oncological treatment won't matter, and rushing for an earlier surgery will have been for nothing.

Do you think it would be wise to give him Native propolis? I was thinking of opening the capsule and just giving him the powder. He is already taking Ensure. However, I'm not entirely sure if I should give him any kind of blended food at all, even if it is homemade, considering that specific muscle is blocking his food intake (I'll check with the doctor first).

Zachary Howard2, that VSL#3 probiotic you have is actually pretty solid. It’s a bit pricey though, so maybe check with your doctor before you dive in. That antibiotic I mentioned earlier... I think it's called cyclosporine, but I can't be 100% sure.

Fiz, my bad, the antibiotic is actually Cipro. I finally dug up the paperwork from the hospital.

Linda Patel21 said:Fiz, VSL#3 might be a decent probiotic for you. It’s a bit pricey, so maybe check with the doctor to see if he should be taking it. That antibiotic I mentioned earlier—I think it's called cyclosporine, but I can't say for sure.

Thanks, I'll ask the doctor.
I'm terrified of giving him anything without professional advice just to avoid making things worse, but watching him fade away like this every single day... it's honestly gut-wrenching. 🙂

Fiz, you definitely gotta ask the doctor. Jeez, never a moment's peace...

Adding probiotics won't hurt him; if anything, it’ll make things better. Just give him a heads-up before you start giving them to him. You can easily mix them right into his Ensure. Places like Whole Foods carry all sorts of different kinds—just ask the staff there which one would be the best fit given the circumstances.

Angela Wright said:Fiz won't be hurt by probiotics; if anything, they'll help. Just make sure he knows you're giving them to him. You can easily mix them into his Ensure. Stores like Whole Foods carry all sorts—just ask the staff which would be best given the circumstances.

I’ll bring him both today, along with some Native propolis.
Yesterday, the doctor told my husband that things aren't progressing well; even after attempting to manipulate that muscle again, there hasn't been much improvement. They're hesitant to suggest surgery because he's so frail—I suspect they're worried about the risks involved during the procedure.
The whole situation feels grim. At this rate, he'll literally starve, even though we're trying to sustain him with Ensure.
If the Native products and probiotics make a difference, wonderful. If not, well, whatever God wills.
My husband is being realistic about it, but he still feels it's unfair—that he should at least be given a fair shot at further treatment.

Amanda Miller69 said:I'm taking both that and the Native propolis to him today.
Yesterday the doctor told my husband they're basically spinning their wheels; they tried treating that muscle again, but it’s just not cutting it, and they don't dare perform surgery because he's too weak (they're probably terrified he won't make it off the table).
The whole situation feels grim to me; at this rate, he’ll literally starve to death even though they're "feeding" him with Ensure.
If Native and probiotics actually help, great, if not, then God help us.
My husband is being a realist, but he says it isn't fair and that he should at least get a shot at further treatment.

Look, neither propolis nor Ensure is going to fix his sphincter (assuming that's what we're talking about here), but at the very least, it might perk him up enough to handle a minor procedure. Just be careful when you give him the propolis—mix it into some yogurt, otherwise, it’s just going to stick to the inside of his mouth.
He’s asking about getting hooked up to glucose, too. To me, Ensure doesn't feel like much of a substantial meal.
Why don't you ask them if some antispasmodics might help ease that cramping? They’d probably have thought of it themselves if it worked, but it doesn't hurt to ask.

Angela Wright said:Look, propolis or Ensure (assuming that’s what we're talking about) isn't going to fix his sphincter for sure—just be careful when giving him the propolis by mixing it into yogurt, otherwise, it’ll just stick to the inside of his mouth—but at least it might give him enough strength to get through a stupid procedure like this.
He should probably ask if they can hook him up to some glucose. To me, Ensure doesn't exactly feel like a substantial meal.
Maybe ask them if antispasmodics would help ease those spasms? They’d likely realize that themselves if it were an option, but it never hurts to double-check.

My sister-in-law is flying in from Sweden today (she works in the medical field). A friend of hers who works over at Jordan is visiting my father-in-law and mentioned he’ll likely head into surgery this Wednesday. We’re heading over to see him this afternoon, so we should hear more then.
The issue involves the sphincter, and I know Native won't do much for that, but like you said, it might just help bolster him enough for the operation.
I’ll ask about the glucose too, though I find it hard to believe they’re so incompetent that they wouldn't have provided it already.
The Doctor who took over his care while he was under Medicare is a professor, so I assume someone competent is actually in charge, but there's certainly no harm in asking.