#201 ·
Hannah Wells30 said:I don't want this to look like an ad, so just shoot me a DM.
Thanks! I actually already gave them a call, so I'm heading out tomorrow to pick up my gallon.
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Support resources for families dealing with cancer and other serious illnesses
Support resources for families dealing with cancer and other serious illnesses
Started by casualpanther1 · · 👁 21 views · 1.9K replies
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Thanks! I actually already gave them a call, so I'm heading out tomorrow to pick up my gallon.
#202 ·
darkmaker70;14354871..The absolute worst part is when doctors won't even look at patients or acknowledge them... it’s like they’re trying to tell you that you’re already written off and shouldn't even bother fighting. That is completely wrong said:
While my father was being treated, we ran into that exact kind of attitude from doctors and staff constantly. I once told someone they really shouldn't be dealing with our medical staff, and I still stand by that today. Sure, there are exceptions, but generally speaking, it's a disaster👎.
When our whole family was at our lowest—miserable, desperate, terrified, and drowning in questions—the doctors and nurses just made things harder with their arrogance. They used rudeness and insolence to mask their own incompetence.
They didn't track what was happening with my dad. The afternoon shift had no clue what happened in the morning, and vice versa. Everyone just acts surprised whenever you ask a question or, God forbid, actually demand something.
During those last few months while Dad was in the hospital, I didn't meet a single person in the healthcare system who had any desire or enthusiasm to actually try anything. A total catastrophe!!! 😠😠
Let’s be clear: I wasn't looking for a shoulder to cry on or asking them to empathize with me. I just wanted answers to the medical questions I asked. Instead, it usually ended with aggressive retorts like "stay out of things that don't concern you," or "we know what we're doing," or "can't you see the situation he's in?" or "what more do you want?"
One time, Mom finally had enough and snapped at them. After that, the nurses stopped rolling their eyes every time we asked a question.
People always drone on about how low healthcare salaries are, especially for nurses and all that... I couldn't care less!!!! I have a low salary too, but I have never—ever—been rude to the people I serve (and my job involves being around people non-stop). I always listen with a smile, no matter how fed up I am or how little I make.
For a long time, I seriously considered suing them for the mistakes they made.
#203 ·
darkmaker70 said:....I wanted to ask you how your mom is doing, since both of them had surgery just a few days apart.......mine actually seemed better right after the operation than she does now, her appetite is pretty weak, she's struggling with bowel movements, says she constantly feels the urge but then when she finally gets to the bathroom, nothing happens at all....
And one more question for everyone else—has anyone here or anyone you know used some kind of Prosure preparation?
My mom is doing (relatively) okay. Her bathroom situation has leveled out. After those initial days where things were waaaaay too soft, like 5 or 6 times a day, it’s back to normal now, maybe 2-3 times, which is what the doctor expected anyway (since her large intestine was significantly shortened). She did mention feeling a bit bloated with some gas yesterday, though. It worried me a little so I brewed some tea (some Ansal brand from DM, specifically for bloating)
Maybe you could try some tea, or flaxseeds (I read they're best when freshly ground, but I just use the Leinen plus from Schnekope with ground plums included)... or maybe an acidophilus or Activia...?
As for Prosure, while Mom was still in the hospital dealing with those super watery stools (literally just water!), they told me not to give it to her. Her discharge papers said twice a day, and her primary care doctor wrote her a prescription for it without any issues, but she hardly ever takes it. Plus, she says as soon as she has Prosure or Biota juice, she's sprinting straight to the restroom. The doctor also mentioned there's really no need for it if she's eating normally and has a decent appetite.
When she was being discharged, her doctor told her she could eat just about anything, homemade stuff or cooked meals. Her diet right now is mostly grains... plus veggies (chard, potatoes, celery, carrots...)... fish... Chicken is a rare treat (I'm not entirely sure if she should avoid it if we can't find actual organic, free-range chicken that hasn't been pumped full of junk or growth hormones)... and yesterday she even asked if she could have lamb or goat meat... I don't really know 😁 (?)
Tomorrow we FINALLY get the bloodwork done! It feels like there's always some new excuse or delay... and she's still holding onto this hope that she can dodge chemo altogether... it took everything in me not to lose my mind trying to explain things gently to her yesterday...
#204 ·
Ladies, please, try to be patient... I know it’s incredibly difficult and honestly terrifying, but your mothers just went through surgery. Bowel surgery is an massive undertaking; the body needs about a year and a half to truly recover. For my mom, it took at least six months just for her bowel movements to stabilize. It's also completely normal for her to deal with constipation moving forward since the intestinal tract is shorter now. As for bloating and other issues—you really have to be careful. Avoid broccoli, cauliflower, onions, and any vegetables that cause gas. Later on, she might even experience gas buildup causing internal pressure against the surgical site (that's something my mother deals with)... Lots of broths and teas, but absolutely no sugar. My mom drinks kukisha constantly (about a liter a day); it’s a tea used in macrobiotics to help regulate acidity in the stomach and intestines and all that. There’s actually another one too—one uses the twigs and the other uses the leaves, so you choose based on which part of the intestine was affected... it's all detailed in the book Kushi ishrana...
I am wondering if there is an alternative to a CT scan with iodine contrast, since my mom is allergic to iodine, specifically for the purpose of safely identifying any changes in the liver?
I am wondering if there is an alternative to a CT scan with iodine contrast, since my mom is allergic to iodine, specifically for the purpose of safely identifying any changes in the liver?
#206 ·
Linda Peterson37 said:Back when my dad was going through his treatment, we ran into this attitude from doctors and medical staff constantly. I honestly felt like anyone who had to deal with our hospital crew should just stay far away, and I still feel that way today. Sure, there are exceptions, but looking at the big picture? It’s a total disaster👎.
When our whole family was at our absolute lowest—just feeling miserable, helpless, heartbroken, and terrified, with a million questions running through our heads—the nurses and doctors just made everything harder. They were arrogant, and they used rudeness to mask the fact that they didn't actually know what they were doing.
They weren't even tracking my dad's progress. The afternoon shift would have no clue what happened during the morning shift, or vice versa. Everyone just acted surprised whenever you asked them a question or, God forbid, actually demanded something.
During those last few months while Dad was in the hospital, I didn't meet a single person in the healthcare system who showed even an ounce of genuine desire or enthusiasm to actually try helping. A complete mess!!! 😠😠
Don't get me wrong, I wasn't looking for a shoulder to cry on or expecting them to empathize with me or anything. I just wanted straight answers to the medical questions I was asking. But instead, it always ended with these snappy, aggressive responses, basically telling us to mind our own business, acting like they knew best, or saying things like, "Well, what do you want us to do now?" or "Can't you see the situation he's in?" or "What are we supposed to do about it?" etc.
One time, Mom just reached her breaking point and snapped at them, and after that, the nurses stopped rolling their eyes every time we asked something.
People are always talking about how low the pay is in healthcare, especially for nurses and all that... honestly, I couldn't care less!!!! I have a pretty tight paycheck too, but I have never—not once—been rude to the people I serve (and my job is literally being around people non-stop). I always listen with a smile, no matter how fed up I am or how little I'm making.
For a long time, I seriously considered suing them for some of the stuff they pulled.
Honey, don't beat yourself up wondering if you're a good person or not based on the career you picked.
It's not worth stressing over their lack of empathy, though you definitely need to show them how sharp your mind is at every turn...
#207 ·
How can doctors be 100% sure there aren't any metastases when they take out a cancerous tumor?
Basically, my mom had some breast tumors removed, and the report said there was no spread and the lymph nodes were negative.
I know cancer usually travels through the lymph system, so if nothing was found there, does that mean it’s totally gone? Or... what?
I don't know, I guess I've just noticed she's been coughing a little bit for maybe two months now. It’s not constant, just a few times a day. Honestly, I don't even know if she was doing this before and I just didn't notice, or if since she got the diagnosis I've just been overthinking everything.
Is it actually possible for a metastasis to have moved to the lungs even if the lymph nodes came back clean?
I'm just lost at this point... I'm really scared for my mom.
I tried bringing it up to my parents, but they won't shut up about how everything is fine. They're sticking to the idea that Mom is basically cured and that the chemo she finished was just preventative (at least, that's what the doctors at the hospital told her).
She feels great, though. She handled the chemo really well, and she's got 17 sessions of Herceptin left to go.
Am I just worrying too much... maybe?
Basically, my mom had some breast tumors removed, and the report said there was no spread and the lymph nodes were negative.
I know cancer usually travels through the lymph system, so if nothing was found there, does that mean it’s totally gone? Or... what?
I don't know, I guess I've just noticed she's been coughing a little bit for maybe two months now. It’s not constant, just a few times a day. Honestly, I don't even know if she was doing this before and I just didn't notice, or if since she got the diagnosis I've just been overthinking everything.
Is it actually possible for a metastasis to have moved to the lungs even if the lymph nodes came back clean?
I'm just lost at this point... I'm really scared for my mom.
I tried bringing it up to my parents, but they won't shut up about how everything is fine. They're sticking to the idea that Mom is basically cured and that the chemo she finished was just preventative (at least, that's what the doctors at the hospital told her).
She feels great, though. She handled the chemo really well, and she's got 17 sessions of Herceptin left to go.
Am I just worrying too much... maybe?
#208 ·
Yeah, so the surgery was at the start of February, and my mom kept insisting it wasn't a big deal since her lung scans were totally fine right before they did it.
#209 ·
This is the diagnosis my friend's husband just received.
His wife is currently in a coma and hasn't woken up yet; everything happened so fast, it's been a complete shock...
Surgery isn't an option, so they are looking at radiation and chemotherapy instead...
Does anyone here know anything about this specific illness? I’m looking for any insights or stories from families who have gone through this...
I WOULD APPRECIATE ANY INFORMATION YOU CAN SHARE!
His wife is currently in a coma and hasn't woken up yet; everything happened so fast, it's been a complete shock...
Surgery isn't an option, so they are looking at radiation and chemotherapy instead...
Does anyone here know anything about this specific illness? I’m looking for any insights or stories from families who have gone through this...
I WOULD APPRECIATE ANY INFORMATION YOU CAN SHARE!
#210 ·
Amy Jones20 said:And yeah, the surgery was at the start of February. Mom insisted it couldn't be anything serious since her lung scans right before the procedure came back totally clear.
Look, if I were you, I'd tell your mom to just go get those lungs scanned again. If everything is fine, great—you've got peace of mind. But if something actually is brewing, it's way better to catch it now rather than later. Either way, you won't be sitting around worrying about it.
#211 ·
shadowmason6 said:darkmaker70 did you see the PM I sent you a few days ago?
Just saw this now. Sorry, I replied!
#212 ·
Hannah Wells30 said:This is the diagnosis my friend’s husband received.
His wife is in a coma, unresponsive—it all happened so fast...
Surgery isn't an option, so they're looking at radiation and chemo.....
Does anyone have experience with this disease? Any family stories?
ANY INFO HELPS!
From what I understand, that's a very rare type of brain tumor. I can't offer specific advice or details since I don't know much about that particular kind, but try searching online; you should be able to find some helpful info.
#213 ·
Amy Jones20 said:How exactly do physicians attain such absolute certainty that no metastases have occurred during the excision of a malignant tumor...
I am not entirely certain how medical protocols are structured across the rest of the country, but in my mother's case, her surgical team consisted of three separate oncologists... Each specialist was responsible for verifying their own specific area to ensure that absolutely nothing was overlooked during the procedure...
Amy Jones20 said:I’ve been reflecting on something quite peculiar lately... I noticed that he’s been dealing with this slight, intermittent cough for about two months now. It isn't constant, mind you—just occurring a few times throughout the day. I find myself wondering whether this was a pre-existing condition that simply escaped my notice, or if perhaps his recent diagnosis has caused me to become somewhat more negligent regarding his health...
Is it actually possible that some of the malignancy migrated to the lungs, even if the lymph nodes came back clear...
My mother is a heavy smoker, and from the very moment she started feeling that persistent abdominal pain, she was gripped by this absolute panic that it was lung cancer... My grandfather passed away from lung cancer, and frankly, none of us wanted to see her go through that same tragedy. During her initial diagnosis, they mentioned there was some sort of spot on her lungs, but despite all that... even now, after a year and two months, there hasn't been any sign of metastasis, though she continues to smoke more frequently and her cough is only getting worse...
Amy Jones20 said:I am at a complete loss for words... I truly don't know what to think anymore... and the fear I feel for my mother is becoming overwhelming...
I brought the subject up with my parents, but they simply refuse to entertain the possibility that anything might be wrong... They are stubbornly clinging to the idea that Mom is practically cured and that the chemotherapy she underwent was merely a preventative measure, at least according to what the doctors at the hospital told her...
She is feeling quite wonderful, actually; she handled the chemotherapy remarkably well, and now she just has seventeen sessions of Herceptin remaining...
Am I overthinking this... or perhaps just being overly cautious...
It is perfectly natural to feel that underlying dread regarding your mother’s health, much like how parents often react when the subject is even broached... For my part, my brother tends to lose his temper every single time I bring up the reality of cancer and the anxiety its consequences cause me. My father is somewhat easier to talk to, primarily because he shares that same quiet terror. As for my mother, I have decided to stop attempting to bridge that gap... She has already made it clear that she finds my worry unnecessary, pointing out that since death could come tomorrow or perhaps five years from now, there is little use in dwelling on it. It seems she is already grappling with enough fear on her own, and I have no desire to burden her further with mine...
Don't let this weigh too heavily on you; we have all navigated these types of waters at some point, and I am well aware of how difficult this must be... If she feels strong and handled everything with grace, then perhaps you should simply trust that things will settle down as they ought to, even if you find yourself quietly worrying in the meantime...
Hang in there and keep the faith... kisses!
#214 ·
My mother underwent an extensive series of tests at the Mayo Clinic yesterday. As per usual, my father simply sent a brief text message stating, "everything is fine." In typical fashion, they are currently somewhere in transit, and I won't have any actual clarity for another few days...
I find myself somewhat stunned when I reflect on how much everything looked this time last year compared to where we stand today. To everyone on this forum, thank you because it was here that I found both emotional support and a wealth of information to pass along to my mother... Let us hope this improved health status persists longer... that we might finally begin to move past this constant state of anxiety...
The struggle continues,
stay strong, fellow fighters... kisses
I find myself somewhat stunned when I reflect on how much everything looked this time last year compared to where we stand today. To everyone on this forum, thank you because it was here that I found both emotional support and a wealth of information to pass along to my mother... Let us hope this improved health status persists longer... that we might finally begin to move past this constant state of anxiety...
The struggle continues,
stay strong, fellow fighters... kisses
#215 ·
Nancy Hernandez43 said:My mom went through some extensive testing at the Mayo Clinic yesterday. Typical dad behavior though—he just sent a quick text saying "everything is fine." They're traveling somewhere right now, so I won't know anything more for a few days.
I'm honestly just in shock when I think about how things looked this time last year compared to today. A huge thank you to everyone on this forum... I found so much support and helpful info here to share with my mom! Let's hope this good health sticks around for a long time... so we can finally stop worrying...
The fight continues,
hang in there, fighters! kiss
Amazing🎉 You really made my day with such wonderful news. The more time passes, the less chance that monster has of coming back.
👍Keep it up!
Once you have a free moment, tell me more—maybe even via DM—about all those detailed tests they did at the Mayo Clinic. At my local clinic in Cleveland, they usually wrap everything up in five minutes!🤷
#216 ·
Hey there, fighters!!
Sorry I’ve been MIA lately—I’ve been dealing with this brutal bout of sciatica (and let me tell you, it hurts like hell), and honestly, the painkillers and injections haven't done squat. To make things even more fun, I've got this fever hitting 101.6 constantly. My bloodwork shows some serious inflammation too—my CRP is through the roof at 187.8 when it should be under 5—so it looks like there's some kind of infection going on. It’s not my kidneys or bladder, though. If things don't settle down by Monday—I'm on antibiotics right now—then I might have to head straight to the ER for surgery. Fingers crossed everything stabilizes...
Grace Fowler is staying positive because of her mom :-))
Sjebana: hang in there, I know YOU CAN DO THIS!!!!!
Best, Grace
Sorry I’ve been MIA lately—I’ve been dealing with this brutal bout of sciatica (and let me tell you, it hurts like hell), and honestly, the painkillers and injections haven't done squat. To make things even more fun, I've got this fever hitting 101.6 constantly. My bloodwork shows some serious inflammation too—my CRP is through the roof at 187.8 when it should be under 5—so it looks like there's some kind of infection going on. It’s not my kidneys or bladder, though. If things don't settle down by Monday—I'm on antibiotics right now—then I might have to head straight to the ER for surgery. Fingers crossed everything stabilizes...
Grace Fowler is staying positive because of her mom :-))
Sjebana: hang in there, I know YOU CAN DO THIS!!!!!
Best, Grace
#217 ·
Grace Fowler said:Hey everyone, hang in there!!
I haven't been posting much lately because I've been dealing with an acute bout of sciatica—and let me tell you, it hurts like hell. The painkillers and injections have been pretty much useless so far. To make things even more interesting, my fever spiked up to 101.6. My blood work shows some crazy inflammation levels (CRP is at 187.8 when the normal range is basically zero to five), which points to some kind of infection. It’s not my kidneys or my bladder, but if this doesn't settle down by Monday despite the antibiotics, I'm heading straight to the ER for surgery. Fingers crossed everything stabilizes...
Who am I kidding? I'm staying positive for Mom:-)
Hang in there: seriously, you can do this!!!!!
Best, Grace
Ugh, Grace, I really hope you get through this ASAP. You honestly cannot catch a break, can you? Sending good vibes your way—stay strong!
#218 ·
Grace Fowler said:Greetings to all you fighters!!
I haven't been posting much lately because I’ve been dealing with an acute bout of sciatica—it truly feels like hell—and honestly, the painkillers and injections have been completely useless... And, if things don't take a turn for the better, I’ve been running a fever of 101.7 degrees constantly, and my blood work shows a massive infection (my CRP is at 187.8 when it should be under 5), which suggests some kind of infectious process is happening; the kidneys seem fine and it isn't my bladder, so if things don't settle down by Monday despite the antibiotics, I'll likely have to head straight to surgery... We can only hope everything stabilizes...
At least I can stay positive for my mom:-)
Sjebana: Well, we keep moving forward, I know you CAN handle this!!!!!
Best, Grace
It is quite difficult to read this... though I am sincerely hoping you check back in after the weekend to say things have improved and that surgery won't be necessary...
I'm keeping my fingers crossed, and thank you for staying positive on our behalf...
Hang in there! kisses
#219 ·
gentlemoose62 said:Wonderful🎉 Such lovely news to brighten my day... though I suspect as time slips by, the chances of that wretched thing returning grow slimmer by the hour...
👍Exactly like that!
Whenever you find a spare moment, please describe the scope of the testing they perform at the unknown facility... back in Cleveland, they wrap everything up in five minutes flat...🤷
Well... whether they are extensive or not, she arrives there with her blood work from the LAPD, checks in during the morning, and then the rest remains a mystery... all I know is that my father doesn't reach out until they are discharged, usually around 2:00 PM. I'll ask him in a few days, since I certainly can't bring it up to her... It seems they put in far more effort there than we see here... This time, they were likely deciding whether to proceed with the CT or PET scan, and if they go through with it... she'll be heading to New York City for the imaging in about two weeks...
Thank you for the support, and I will be in touch very soon...
#220 ·
Grace Fowler said:Hey fighters!!
I haven't posted lately because I've been dealing with an acute sciatica flare-up (it hurts like hell!) and honestly, the painkillers and injections have been totally useless. And just to make things interesting, I've got a fever of 101.6 again. My bloodwork shows a massive infection marker—CRP is at 187.8 when it should be under 5—so there's definitely some kind of infection going on. It's not my kidneys or my bladder, so if things don't settle down by Monday (I'm on antibiotics), I might have to head to emergency surgery. Fingers crossed everything stabilizes...
Anyway, I'm staying positive for Mom:-)
Screw this: hey, keep going, I know you CAN do this!!!!!
Best, Dina
Well, you certainly aren't bored!
I'm crossing my fingers for you, really... unknown and I could go on forever, but I know everyone else will too, so you'll have all the good vibes you can handle!
Let's hope you can skip the surgery this time.
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