Resources and support for families dealing with cancer and serious illness

Amanda Miller69 said:Honey,
I completely get you because I’m going through the exact same thing. I held onto hope until Friday, then I saw the discharge papers confirming metastatic carcinoma—it’s everywhere. We have her settled in Springfield. She’s in pain, and they’re giving her 10mg of Tramal twice a day (a doctor friend of hers calls that a massive dose). She can’t eat, she has no appetite, she can’t even handle a decent cup of coffee....
On top of that, she’s incontinent, weak, looks terrible, and we are just praying to God to take her soon so she doesn't have to suffer. The doctors in Springfield say it could be three days, a few weeks, or months. My sister-in-law, based on her experience losing several relatives to cancer, thinks it’ll be 10-15 days. Mom’s doctor friend says his experience points toward a couple of weeks. Besides, Mom is depressed; she wanders off occasionally, and when she snaps out of it, she gets agitated and demands to go home. She barely speaks now. If I knew this would only last a day or two, I’d bring her home to pass away in peace, but I simply can't afford 24-hour nursing care, and I couldn't handle watching her die right in front of me. My dad passed away three years ago from a heart attack, my brother has his own family to deal with, so my boyfriend and my mom’s cousin are my only real support right now. My brother is actually doing even worse than I am. Hang in there; this is the hardest stretch we'll ever have to push through. Pusa and a big hug.🙂

Sandra Evans13 said:Good luck to anyone still holding onto hope... mine has completely burned out... Sis, I'm so sorry...

Grace Fowler said:Hey everyone!
I don't have much good news to share :-( Honestly, the lab results were pretty rough, so we had to push things back a week with the German doctor to see if her condition improves... (her markers and sedimentation levels spiked, plus CRP is up... we aren't even sure why yet???) But I'm just trying to stay patient and take it one step at a time.
Dear Fiza, I am so incredibly sorry to hear that the latest updates regarding your mom are this bad. Please, try not to take any harsh words she might say to heart—it’s not really her. That irritability she's showing is likely just a reflection of how much pain she's in because of everything she's going through.
Sandra Evans13, I'm praying for your mom, and for you and your sister too. I hope you all find the strength you need to get through this. I truly understand what you're feeling, because I went through something very similar two years ago when I had to say my final goodbye to my dad...
Best, Dina

Grace Fowler;13725160 said:Hi there!
I don't have much good news, unfortunately :-( My results were pretty rough, so we had to push things back with the German doctor by a week to see if things improve... (markers, sedimentation, and CRP are all up... we aren't even sure why yet???) But hey, patience is a virtue, right?

Grace, honey, hang in there! Let's hope it's just inflammation from that wound after surgery. It really won't leave you alone... ugh!😠
You're right about being patient, but I really hope this gets sorted out quickly!

To everyone else fighting their own battles right now, stay strong. This is all temporary... nothing lasts forever, and one thing is certain... better days are coming.

Grace Fowler said:Hello!
I don't have much good news to share :-( actually, the test results were quite poor, so we had to postpone the appointment with the German doctor by a week to see if her condition might stabilize... (there was an increase in markers, sedimentation, and CRP... though the cause remains unknown???) But as they say, patience is key.
Dear Amanda Miller69, I am so deeply sorry to hear that the latest updates regarding your mother are so discouraging; please, do not take any harsh words she may utter to heart, for they do not reflect her true spirit. The irritability she might be exhibiting is merely a reflection of the profound sadness caused by her current situation...
Sandra Evans13, I am praying for your mother, and also for you and your sister, that you may find the strength required to weather such circumstances. I understand your pain, as I faced something quite similar two years ago when I had to say my final goodbye to my father...
Best, Grace Fowler

Grace Fowler said:Hi there!
I don't really have any good news to share :-( . My lab results were quite poor, so we had to push things back with the German doctor by a week to see if her condition might improve somehow... (her markers, sedimentation, and CRP levels spiked, but we aren't even sure why???) Still, I suppose patience is a virtue.
Dear Fiza, I am so incredibly sorry to hear that the latest updates regarding your mother are so discouraging. Please, try not to take it personally if she says anything harsh; it’s just not her true self speaking. Any irritability she shows is likely just a reflection of the grief and frustration over everything she's going through right now.
Sandra Evans13, I am keeping your mother in my thoughts, along with you and your sister. I hope you all find the strength needed to navigate this. I truly understand what you're feeling, as I went through something very similar two years ago when I had to say my final goodbye to my father...
Best, Grace

Linda Peterson37 said:It breaks my heart to read through all these heavy updates... I truly feel for everyone here. I can sense the weight of everything you're going through and the sheer intensity of the emotions sitting in your hearts. It sounds incredibly painful.
My dad isn't doing great lately, but I try to frame it in my mind as just another phase—like the ones he's navigated before—and that things will eventually take a turn for the better.
Amanda Miller69, please don't let the medical prognoses get under your skin. Try to tune them out as much as possible; they can be so counterproductive that you might not even realize how much they're affecting you. For your mom's sake, you can't afford to lose hope. She's still here, and she needs you.

Whenever we visit my dad, we just talk about the usual everyday stuff (even if he doesn't say much back to us lately; he’s been getting quieter). We joke around, tickle him, and keep things light. My brother will actually climb into the hospital bed with him just to chat about anything and everything. Even though we’re all adults now, we’ve always been that close, so we act like we’re just hanging out in our living room, catching up and laughing. I make sure to tell him constantly that he’s the most loved man in the world. We stay affectionate, and honestly, it makes us feel better too. We focus entirely on projecting positive energy toward him.
Don't get me wrong, we aren't delusional. We aren't ignoring the reality of the situation or the medical facts. We've simply made a conscious choice within our own reality to fight this illness alongside him and help him heal.
Of course, that’s easier said than done. There are moments when I feel like I want to scream from the pure exhaustion of it all, or just smash everything in sight. But I really don't have a choice. Because of my dad, I can't just let go of the wheel and give up; I have to stay in the fight right there with him.

Amanda Miller69 said:I am in a complete state of misery right now; I’m tearing myself apart because of my mom, she’s all I can think about. Yesterday, I found out from a doctor in Springfield that there wasn't even a brain CT performed (it just wasn't done), the abdominal ultrasound report was sloppy, and the discharge papers were basically dismissive. My aunt went to the hospital yesterday to get a signature for a colostomy bag that was missing, and her head nurse told her that Mom had already been aggressive there—she wasn't just tearing the bags open, she was refusing to walk entirely. And regarding what she said about passing out when they lifted her? That wasn't it; she actually fell out of bed, and she told my aunt she knew there was no hope left for her. What absolute crooks, I can't even say it. Who were they lying to three or four years ago? It would have been better if they hadn't done anything at all, if they hadn't operated, just to spare her this further agony and suffering. It feels like she was just a textbook case for them to practice on and continue their studies. That’s probably why they didn't bother with her, and I honestly suspect someone told her the truth about her condition, because first she was talking about everything she'd do once she got home, and then she suddenly became completely apathetic. Her friend told me yesterday that she couldn't even walk anymore.
The poor woman is struggling so much right now, and she turned off her phone just so she wouldn't have to deal with anyone. I can't blame her; I'm just endlessly sad.😢
Hang in there and don't give up; stay strong, just like you always have.👍
Big hugs🙂

Grace Fowler said:Hey everyone!
I don't really have any good news to share :-( To be honest, my test results were pretty rough, so we had to push things back with the German doctor by a week to see if things might stabilize... (my markers, sedimentation, and CRP levels spiked, and we aren't even sure why yet???) But I suppose patience is a virtue.

slyseal28 said:Fiza, I’ve been following your story for a while now, and I can't help but feel you might be reaching some rather flawed conclusions. Your mother underwent surgery, which undoubtedly gave her a fighting chance at more time. No doctor would even touch her if her condition were as dire as you're making it out to be. Honestly, I get the impression that ever since you read that PhD report, you've completely misinterpreted the situation. You mentioned metastatic ovarian cancer and that everything was involved... but that is precisely why such a radical surgery was performed. Right now, your mother needs to recover. What you're doing right now feels, in my honest opinion, entirely misplaced. I might sound harsh—and please believe me, I have no intention of offending you—but it seems to me like you're essentially giving up on her prematurely.

Furthermore, you say she’s withdrawing... Well, your mother was fitted with a colostomy bag. Frankly, if it were me, I’d shut myself away because of that too, at least for a while. Try to understand that everyone needs time to process a shock like this. She has to adapt to this new reality, and by acting this way, you're only making things harder for her. Forgive me again if I'm being too blunt, but I truly think you're overreacting. I think you need to pull yourself together and focus more on her right now. If I were in your shoes, I would have brought her home regardless of how difficult it was. If it is her fate to pass within two, three, or even seven days, then let her spend those days in her own home.

Fiza, please take this in the spirit it's intended. I'm not trying to attack you; I'm just trying to point out where I think your perspective is skewed.

Laura Williams74 said:I’ve been reading through all your posts for a while now... I just want to wish everyone the absolute best—most importantly, I hope you all find healing and things start looking up. May you find strength and faith... this whole situation has turned into an absolute nightmare.

And honestly, based on how my own health has been trending lately, I think I might be joining your ranks pretty soon... once I get an actual diagnosis...

I'm 31, a single mom, and I'll post an update once I get concrete news today. I read a lot here, and I truly believe it's vital that we all swap information—sharing what's happening with each of us, from those very first symptoms to the final diagnosis, the meds, and everything else that comes with it...

Fiza, Dina, and everyone else—I know how incredibly hard this is for you. It's brutal when you can't even get standard medical leave to take care of your loved ones, so hang in there... doctors can be so blunt and harsh sometimes that it makes it almost impossible to hold onto hope. I’m sending you all strength and hope, and I completely agree with what slyseal28 wrote.

God, this thing is such a cursed, low-life piece of filth....

Laura Williams74 said:I’m sorry—I know some of you already have a diagnosis while I’m still waiting on anything official. Looking back, my last post was a bit much... I let panic get the best of me. About six months ago, I had to walk off the job because my heart started racing like crazy, my face went bright red, and I felt this sharp, burning pain under my arm. Basically, I ended up at the ER because it was yet another one of those episodes. That’s when the doctor who saw me first mentioned cancer. She told me, "These symptoms aren't anything to ignore; you need to run tests, because this could be a carcinoid tumor." When I asked where, she just pointed toward my abdomen and said it was somewhere in there...

I've got an ear infection and I'm generally feeling pretty rough... but honestly, reading through your posts has taught me so much. I've realized that this isn't just something that happens to "some doctor"—it's right here among us. It’s better to be proactive and get the testing done rather than just waiting.

Of course, I’m hoping it’s nothing, but as time goes on, I’m losing that certainty. Again, I apologize for coming in hot with the panic before I even have a diagnosis. A few years back, my grandfather passed away from lung cancer. He lived in Miami, and since I hadn't seen him in years, I didn't really "process" it the way many of you did—you all who were right there caring for your loved ones. But now, it feels like everywhere I turn, no matter who I talk to, the word "cancer" pops up... including from that doctor that day...

Hang in there. Lately, I’ve been falling asleep to prayer—praying for my family, for everyone who is sick, and even for the people I'm clashing with. It helps me keep from holding onto any resentment toward them...
It’s almost like I’m trying to disperse all this negative energy surrounding me... but enough about that...

slyseal28 said:Angela Wright was actually referring to the community forum. Our forum was specifically designed to be a gathering place for people from all sorts of different cities, small towns, and even different countries... I think you might have misinterpreted her invitation.

rustyscout31 said:Thanks for the insight, slyseal28.😉 Honestly, I want to throw my full support behind you because seeing you hold onto hope actually makes things a little easier for me, too—even though I’m fully aware I’m slowly losing my mother (I feel you, sis). But if nothing else, since we’ve pretty much tried everything already, I just want to help her enough to make her life as easy as possible. I used to guilt her constantly for taking way too many pills, and now the poor woman is actually enduring this sneaky, underlying pain just to avoid taking more medication. Now that I'm facing a completely different situation, my mom is just lost, bless her heart. A doctor I trust, along with several friends whose loved ones passed away from cancer, told me I should give her painkillers so she doesn't have to suffer. My friend, who's a physician, says he wouldn't even recommend chemotherapy because she's simply too frail and has such weak bone marrow (thanks to that damn osteoporosis😠). He thinks chemo would just break her.
The dilemma: push for chemo or just let nature take its course?
And another thing: should I let her take Voltaren and Tramadol as needed, or strictly dose them out? I'm terrified that soon, they won't be strong enough to touch the pain...
God, it's just so hard.🤷

Amanda Miller69 said:My dear,
if things were truly as you suggest, I would be the happiest person alive. I spoke with the physician at the Mayo Clinic today, and he made it quite clear that we have to accept that this is simply running its course and there is nothing left to be done. The man reviewed every single test result, so it isn't a matter of me misinterpreting the situation... they deal with dozens of cases just like this every single day. My mother's friend, who is a diagnostic specialist and a close family friend—or at least, someone she trusts implicitly, and certainly someone who wouldn't lie to her child—told me the exact same thing. The malignancy has spread through her entire abdomen; the peritoneum, the liver, the gallbladder, the bladder, the intestines, and the stomach. They haven't even touched the liver or the stomach because she wouldn't survive the procedure. The metastases are systemic... do you honestly think I wouldn't give anything for my mother to recover or for some miracle to occur?
It felt as though they were using her as a "test case" at Johns Hopkins to see what could be achieved, only to avoid us once they realized the outcome... Dr. Meyer even expressed his doubts about whether surgery was even an option, mentioning before the procedure that it wasn't realistically operable.
Please, forgive me and everyone else, but I am at my breaking point and I know I am being harsh...🙂