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

wanderingtinker81 said:I'm so sorry about your mom. 😢

Thank you, I read up on his surgeries, they sound pretty radical and I don't know how she'd handle them, I'll talk to her.

If anyone else has advice or recommendations, please feel free to share.

Man, you always think these terrible things only happen to other people, then you realize nobody is immune. My mom was only 50, and genetics wasn't even an issue.

Hi everyone!
It’s been a while since I posted, but I’m still following along here and praying for everyone who is sick. My mom was diagnosed with Stage IIIC ovarian cancer. Sadly, she didn't even make it ten full months after the diagnosis—surgery, one line of chemotherapy, then a second line of chemo, but unfortunately, nothing worked. The biggest hurdle was that she just didn't respond well to the chemo; her markers would dip slightly and then suddenly spike again. Her CA-125 markers were sitting between 1000 and 1500 back when she was still doing okay, but once she hit the terminal stage, it didn't really matter what the numbers were anymore, there was no point in testing. In my mom's case, it was metastatic (it spread to the omentum, basically the peritoneum), and the main issue was that the pathology report showed it was a mixed epithelial ovarian cancer, which responds very poorly to chemotherapy, which is why those markers stayed so high. The surgeon told us that this specific type is extremely rare, I think he mentioned it accounts for maybe 1% of all ovarian cancers. Mom took so much stuff to boost her immunity, everything from Solgar Beta-glucan, Solgar vitamins, raw propolis, Graviola, honey with pollen, beet juice, aronia juice... we even tried hemp oil. We tried absolutely everything, from alternative remedies to the help of white-coat specialists, but sadly, nothing helped.
You all have to believe things will be okay. Fight through it and be there for your moms, because every single day is a new battle, a new start. Don't let her sink into depression; we barely talked to my mom about the illness (I didn't see the point in dwelling on it constantly), we just looked at photo albums and watched old movies together...
I know of some really beautiful success stories where people in that same stage managed to get several more good years out of life.
Sending love to everyone. Just know that I'm following and reading every day, and I empathize with all of you. My pain from losing my mom grows deeper every day; yesterday marked five months since she passed, but it feels like she was right here just yesterday...

I received a call today from the palliative care team over in Pakrac, and honestly, I’m at a loss for words regarding how incredibly grateful I am for their effort and coordination.
They’re arranging placement for my father-in-law at the facility near Strmac, which is a specialized hospice designed specifically for these end-of-life situations. He’ll finally get the level of care he deserves, including the installation of a feeding tube so he can actually stay hydrated and nourished, ensuring he's properly looked after.
They’ve already touched base with his surgeon and the local medical coordinators to get everything squared away.
I’ve already prepared my mother-in-law for this transition; she even knows the facility quite well since she visited someone there recently.

But now, my husband is calling me saying that my father-in-law is refusing to go. My husband thinks maybe we should just wait a little longer, thinking that since he can still swallow a bit—even if it's a struggle—we should hold off.
What exactly am I supposed to say? Should I tell him to "wait" and risk him choking on food?
I told my husband that he needs to talk to his mother and they need to reach a consensus. I don't want to end up being cast as the "evil daughter-in-law" who is trying to shove him into geriatric care just to be rid of him. I refuse to interfere in their final decision, because I don't want to spend the rest of my life living with regret, knowing I didn't do everything in my power.

It feels like history is repeating itself; it was the exact same dynamic when I was arranging care for my mother back in Dug Resa.

It always seems like whenever you try to help, you somehow end up making things worse.😵.

Maybe we should present it to him as a temporary measure while he gets back on his feet, because Mom can't handle this on her own—she really needs some help.

wanderingtinker81 said:I am so sorry about your mother... 😢

Thank you; I have been reading up on his surgeries, and they sound rather radical, so I am uncertain how she would receive them... I will have to sit down and talk with her.

If anyone else happens to have any advice or recommendations, please feel free to share.

One always assumes such terrible things only happen to others, until you realize that no one is truly immune... My mother is only 50, and genetics didn't even play a role here.

You always think these tragedies strike someone else, but when they hit home, you learn so much about the people you love and those who love you...

My mother was 56 when the diagnosis of Stage IIIc ovarian cancer struck us... She lacked strength following the surgery, and it seemed as though the prognosis was destined to worsen. At that time, her oncologist told her, "Life is like a meter with 100 centimeters. You were destined for 100 years, so how could you give up now at just 56, having barely passed the halfway mark?" That single sentence was the turning point that drove her to defy the odds and endure for eight and a half years...

Today, we are facing exactly what we feared—the necessary medication is unavailable, her physical strength has plummeted, and she can find no will to even get out of bed for her children... She is helpless, and we are helpless, yet as always, we face it all together. Unfortunately, there is no real advice to offer other than listening, believing, and hoping that things might improve...🙂 One shouldn't cry too much or dwell excessively on the illness... psychologically, it only weakens her.

Every oncology patient is a unique case... My mother hardly ever used supplements or alternative methods. In fact, she still maintains a lifestyle where a cigarette serves as a substitute for breakfast... Most people don't even realize what kind of battle is being fought, even in a small community like ours.

I am currently spending my time reflecting and scouring forums to figure out how to approach her and provide strength... because some ruthless, unfeeling bureaucracy isn't going to stop us. This is the third week without the medication, and the latest update is that a new form was filed this morning, meaning my mother’s documentation is headed back to the medical board for review. They are playing a game of bureaucratic ping-pong, using every tactic available just to stall the compassionate import process which, if it ever actually happens, still requires approval from the Department of Health...

Angela Wright said:You definitely need to go to Mayo Clinic. This is a rare diagnosis—a specific type of sarcoma—and treatment involves oncological drugs like Sutent and Chemotherapy. The priority is getting as many tumors surgically removed as possible, as quickly as possible. Since GIST affects the gastrointestinal tract, it spreads metastases from there. It's a stroke of luck that there are actually two effective drugs available, because most sarcomas don't have adequate treatment options.
At Mayo, look for Dr. Santek or Dr. Herceg. They are the top experts in the US for rare tumors.http://www.cancerresearchuk.org/abou...stromal-tumour

He’s at Mayo. Dr. Romić performed the surgery today. The ICU says he’s stable, breathing on his own, and blood pressure is fine, but I couldn't catch a doctor long enough to get the specifics of the operation.

Dana Martin87 said:It’s at the rib. Dr. Romić operated on him today. They’ve got him in the ICU and say he’s stable—breathing on his own, blood pressure is fine—but I couldn't catch one of the doctors to get the specifics on how the surgery actually went.

That’s good news. They'll probably just direct you toward Herceg or Santek for the next steps.

I asked if someone could drive my father-in-law to the hospital in Pakrac today, and he ended up staying there. He’s been coughing quite a bit and having a hard time breathing. They're planning to transfer him to Strmac from there.
My husband mentioned that his mother was a bit too blunt with him yesterday—she basically went from zero to sixty and hit him where it hurts (though she's clearly reached her breaking point with him, too). My husband thought he might still be able to make it home, but today proved that life had other plans.
The palliative care coordinator called me today to say they'll be accepting him at Strmac, so he’ll be moving there either later today or, at the very latest, next week—God willing.

At least now I know he’s under medical supervision. They’ll do everything possible to take care of him and ensure he can pass with dignity.

Amanda Miller69 said:I asked to have my mother-in-law driven to the hospital in Pakrac today, and she stayed there... She was coughing heavily and struggling to breathe. From there, they plan to transfer her to Strmac.
My husband mentioned that his mother was perhaps a bit too harsh with him yesterday—it felt like a sudden blow out of nowhere... though she had already lost her patience with him. My husband thought yesterday he might still be able to stay home, but today we realized the situation is far more serious than we imagined.
The palliative care nurse called me today to say they will accept him at Strmec, so he will be moved there either today or by next week at the latest... if he makes it that far.

At least now we know he is under medical supervision, and they will do everything possible to ensure he can pass with dignity...

I truly hope for a recovery! 🙂

Does anyone here have experience with patients who vomit or suffer from diarrhea regardless of what they eat or drink? Mom says she is hungry, yet she has been unable to keep anything down for seven days straight... She managed to keep a little Coca-Cola down today, but obviously, that isn't a solution.

Nancy Hernandez43 said:I really hope you all recover soon! 🙂

Has anyone dealt with a patient who vomits or gets diarrhea from everything they try to eat or drink? My mom says she’s hungry, but she’s been throwing up everything for 7 days straight. She had a little Coca-Cola today and it seemed to stay down, but obviously, that isn't a real solution.

It would be better if she drank some mint tea. Cola is honestly one of the worst things she could have while feeling this sick.

Douglas Ward9 said:She would be better off sticking to some mint tea; honestly, soda is probably the absolute worst thing she could be consuming while feeling this nauseous...

I assume he’s likely tried suggesting it herself as well, and I find myself agreeing with the sentiment... though I suppose I must allow her the autonomy to decide what she can actually stomach. Thank you for the suggestion, I will certainly pass along the idea of trying mint...

Nancy Hernandez43 said:I truly hope you all see a full recovery! 🙂

Has anyone dealt with a patient who vomits or gets diarrhea regardless of what they eat or drink? My mother claims she's hungry, yet she’s been throwing everything up for seven days straight now. She managed to keep down a little Coca-Cola today, which is a start, I suppose, but we both know that isn't a sustainable solution.

Just please be vigilant about potential bowel obstructions. If she starts experiencing intense pain, don't ignore it—that's a serious complication. It happened with my own mother, and if they hadn't performed surgery on her immediately, things could have taken a very dark turn within three days.

My father-in-law is heading out to Strmac today. I spent half of yesterday playing logistics coordinator because the local hospital doesn't have its own transport, and Strmac only provides it for discharges. Since the local clinic only handles pickups from home, we finally managed to track down a dispatcher over in Bjelovar, and I had to call them again this morning just to make sure everything was still on track.

Yesterday, my husband and mother-in-law took all those papers over to the hospital in Pakrac, essentially trying to "sweeten the deal" so my father-in-law would swallow the fact that he's being moved to Strmac.

We'll just have to wait and see how things unfold from here and what happens next.

Amanda Miller69 said:Keep an eye out for any signs of bowel obstruction, particularly if she starts experiencing intense pain... it happened to my mother, and had they not performed surgery, things would have taken a very dark turn within three days.

They are going to hospitalize her against her will. She’s already dealt with E. coli in her urine twice this year alone, and since she hasn't been on her medication for twenty days now, everything has just sort of... unraveled. I am quite stunned, considering everything seemed perfectly normal just fifteen days ago.

Once she is under hospital supervision, I am certain she will begin to recover properly 👍and it will be significantly easier for us to coordinate with the medical staff, given that she has insisted on handling all her doctor appointments entirely on her own all these years (I will make sure to ask about the intestinal issues when I can, so thank you for the heads-up, Zachary Howard2).

Naturally, there hasn't been even a whisper regarding her medication 😠and regardless, she wouldn't even be able to take it at this stage anyway...

We continue to push forward 🙂with everything we have...👍

Benjamin Grant6, fight for that medication—shout, demand, do whatever you have to do. Your mother’s life is what matters most, and I truly hope you manage to secure it.
It's actually better that she's under hospital supervision; at least they can react quickly if things take a turn for the worse.

I spoke with my mother-in-law yesterday, and honestly, things are looking even bleaker than I had imagined. My husband was woken up in the middle of the night by his father's coughing—just constant gasping and moaning. He woke my wife up, and they called 911, which ended up rushing him to the hospital in Springfield. The poor man was struggling just to breathe through all that congestion.
The doctor also gave them the grim news: they need to prepare for the worst, because there isn't much more they can do.
He's currently at Cliffside. I'm driving my mother-in-law there this Saturday, though I'm dreading the whole thing. It brings back such heavy memories of my own mother, and my father-in-law has always been like a second father to me.
I'm also worried about exposing my baby to this much stress—which I know I really shouldn't be doing—but I suppose I'm just wired to show up for people when they need help.
My husband will be heading back to NYC on Saturday for work; otherwise, he would be the one driving her.
We’re all feeling pretty helpless right now, just waiting for the inevitable. :-(

Amanda Miller69 said:Benjamin Grant6, you have to fight for the medication, shout, make demands... A mother's life is paramount, and I truly hope you manage to secure the same outcome.
It is arguably better for her to be under hospital supervision, at least they can react promptly if things take a turn for the worse...

I spoke with my mother-in-law yesterday, and the situation was even more dire than I had anticipated. My husband was woken up in the middle of the night because he heard his father coughing, gasping, and moaning; he woke my wife, and they called an ambulance, which rushed him to the hospital in Springfield. The poor man was struggling just to breathe through all that congestion...
The doctor also informed them to prepare for the worst, suggesting there might be no way to help...
He is currently at Cliffside, and I will be driving my mother-in-law there this Saturday, though the very thought of it fills me with dread, as it brings back such painful memories of my own mother, and my father-in-law is like a second father to me...
I am terrified of exposing my baby to this much stress—which I know I shouldn't, and perhaps shouldn't even do—but I suppose I am simply wired to help people...
My husband returns to NYC on Saturday for work; otherwise, he would be the one driving her...
We are all feeling rather wretched right now, and unfortunately, we are just waiting for the end...

Zachary Howard2, I believe what you are going through is absolutely harrowing... Last year around this time, I lost my grandmother, and fighting for her rights within the hospital system completely exhausted us. It makes it so much harder to accept that Mom is in that very same facility now...
I know this may sound harsh, but when it came to Dad's medication, the hospital staff essentially brushed us off, and we actually had to go out and find information from a major pharmaceutical wholesaler ourselves just to understand why the medication was stuck, and whether there would even be a chance for him to continue receiving it once he started... It is difficult enough for us, but I cannot begin to imagine how it feels for those whom our blunt healthcare system gives false hope...
Right now, our sole focus is on his recovery, and I trust that by Monday, we will receive word that the oncologist is adjusting the therapy... We are prepared to do whatever it takes, and just as before, our financial resources are entirely dedicated to ensuring she receives adequate treatment...

Our healthcare system is a complete joke.

I was absolutely terrified just now. I got a call from the hospital in Cliffside, and I honestly thought they were calling to tell me it was all over. But, by some stroke of luck, my sister called to ask if anyone from the family wanted to come in to sit down with the doctor and get a clear picture of what’s actually happening. It seems they want the patient to have some level of understanding regarding his condition, though I couldn't help but think it's incredibly inhumane to withhold the truth when someone is essentially dying.
For the moment, they've "packaged" the news to sound like he'll be heading into surgery once he recovers a bit—which I suppose provides him with a shred of hope. If they were to tell him the blunt truth, I genuinely believe he would just give up and let go.
Do they even have the right to say things like that to a patient, even if they try to sugarcoat it?

And how am I supposed to handle all this stress on Saturday while being pregnant? I'm terrified that the anxiety might cause me to go into preterm labor, God forbid, or that I'll end up putting both my baby and my pregnancy at risk.

Amanda Miller69 said:Our healthcare system is absolutely useless...

I was terrified to death just now; they called from Cliffside, and I was already bracing myself for them to tell me it was all over, but by some stroke of luck, my sister called to ask if anyone from the family would be coming in to speak with the doctor to discuss the current status. They seem to want the patient to somehow understand how things stand, and I simply told them that you cannot just tell a man he is finished, that he is dying—it isn't humane...
For the moment, they have "packaged" the news so that once he recovers slightly, he will undergo surgery, which is presumably the little shred of hope keeping him going. If they were to tell him the truth, I suspect he would just give up and pass away...
Do they actually have the right to say such things to a patient, even if they attempt to frame it in a "gentle" way?

How am I supposed to endure all of this on Saturday while being pregnant? I don't want to end up giving birth prematurely due to the stress, God forbid, or jeopardize my baby and my pregnancy...

Our doctors aren't exactly trained in tact. The physicians at Aviano are much more discreet. There was only one occasion where a doctor was being blunt, and his father had to remind him to try not to discuss outcomes in such a coarse manner, because ultimately, we could all board a plane tomorrow and perish...

Around here, it is exclusively the mother who communicates with the doctors, and personally, I feel that a patient should never be told absolutely everything, especially if they are approaching the end :-/

The stress is Terrible; please take care of yourself and your little one! That tiny life needs your help too...

I find myself quite scattered, making a steady stream of mistakes throughout the day—particularly at work...

Look, you just have to be straight with him. Tell him, "Here’s the deal: you have this issue and that issue, and here is where things are going wrong." You don't need to go around telling someone they're going to kick the bucket. Instead, you say, "Look, we're going to do everything in our power to get you back on your feet. We'll provide the kind of professional care you simply can't manage at home. We're going to improve your quality of life, but you've got to give us some time and patience."
It all comes down to communicating clearly and finding a way to say it that everyone can actually stomach.

Angela Wright said:Look, you can just be blunt with him: "You have this condition, and here is where the complications lie." There’s no need to tell someone they're dying; instead, explain that we're going to do everything possible to help them recover, that they'll receive care that simply isn't feasible at home, and that our goal is to improve their quality of life—it just requires some patience and time.
All of that can be communicated in a way that is perfectly normal and easy for everyone to digest.

Fair enough. I can live with that approach. I'll tell my mother-in-law that before we even head over to see my father-in-law, we should sit down and talk with the doctor first. I truly hope they aren't so tactless that they decide to just drop the hammer on him without any warning.
The nurse mentioned he's having trouble with a cough, but of course he is—he has lung metastases and fluid buildup, and he’s far too weak to actually clear his lungs, which leaves him suffocating.
He hasn't had a decent meal in days.
We'll see what happens regarding the feeding tube. I'm hoping they can get it implanted, but honestly, I wouldn't be surprised if they just wait around for the inevitable or, worse, try to discharge him to go home.

I just don't get this GIST stuff. I read that it usually starts in the stomach, but it can also show up in the colon, like it did with my dad...
So, here's the thing... what’s the actual difference between a GIST located in the stomach versus a stomach tumor that's spread, or a GIST in the colon versus a standard colon tumor?