Support resources for families dealing with cancer and other serious illnesses

Nancy Hernandez43 said:Honestly, it's hard to expect anyone to really get it—that's just how this disease works. It’s a total mind game. I truly believe my husband is going to find his strength again the second he gets back home, far away from that soul-crushing hospital atmosphere, where he can finally just breathe and relax a little.

If a PET scan is necessary, just get it done. It took us a few months just to help my mom work through the fear before she’d even agree to go through with it. Even now, two weeks after the scan, she's still feeling pretty shaken up—honestly, seeing her like that makes me pray she won't have to deal with another one anytime soon.

The results came in this morning. They found some undefined mass in her left leg. Honestly, Mom just took it in stride—she was like, "After that last nightmare diagnosis, this is nothing." They’re suspecting an enlarged lymph node. She already called her oncologist, and he told her to come in for an emergency appointment. I should probably know more tomorrow, and look, I'm ready for whatever happens, but deep down? I've got a bad feeling about this. So, I totally get where you're coming from, and I'm really hoping things turn around for all of us soon. We're all fighters in this. Hang in there!👍

My husband finally agreed to the PET scan. Gotta call today to get him scheduled.
But here’s the kicker—his neck and head are absolutely killing him. He was dealing with some serious dizzy spells last night, too. Just constant ringing in his ears. He was freezing cold and breaking out in a sweat... totally wiped out. He popped some Tramal and that seemed to take the edge off a little bit. Then this morning, he was having trouble peeing. I don't know if that's just the Tramal acting up or what?

Honestly, I can see that things are totally falling apart. They can stand there and tell me all day that the test results look fine, but I’m looking at a person who clearly isn't doing well. It feels like they’re just checking the lungs and calling it a day, but the real question is what else is going on in the rest of the body.
He's home now. I've gotta pull him up, both mentally and physically. I'm not letting him sink!

bluegull18 said:Hi everyone, I just wanted to say to everyone on this thread that my heart goes out to you all.
I wish I could offer some actual comfort to those who need it, but honestly, I came here looking for those exact words myself.
....
Thanks to everyone for any kind word at all.

God, bluegull18, your story really hit home... it felt like deja vu for me... I went through something similar back when I was a teenager... my grandparents lived with us... and he spent a long time dying from prostate cancer... during those last few months, even morphine wasn't touching the pain, it was that bad... he loved all his grandkids so much, but I was especially close to him... my parents worked, so my grandparents were basically raising us... I can still hear him moaning in pain... it was gut-wrenching knowing I couldn't do anything to help... I just prayed to God to let him go from the suffering... he took everything so bravely... he had such a rough life, and I kept thinking how incredibly unfair this disease was... why him? My grandma slept on the couch next to his bed for the last five months, just being there to serve him, to comfort him, to help... I still admire her so much for that today... he’s gone now too... I barely made it through the funeral... I tried to tell myself he's finally free from the pain, in a place where there's no more suffering... but it's hard... just pray... and hang in there... I don't know what else to say, because...

Now, my own family is fighting for survival again... it's been exactly six months since we got my mom's heavy diagnosis... we were talking yesterday... laughing and stuff... but I can see she's terrified... she's skeptical about the treatment... and I keep telling her that she's going to pull through, no doubt... I'm praying for it... she'll be getting her third vaccine soon... and it's almost time for follow-up checkups... I'm scared of the results too, honestly... but I'm still holding onto hope for the best.
At the same time, you have to keep living and functioning... I have a husband and two kids... at first, it was brutal—I couldn't eat, I couldn't sleep, and when I did, it was nothing but nightmares... I still have weird dreams every now and then... things got a little easier once we actually accepted the diagnosis and faced it head-on (Angela Wright wrote about that here—you should definitely read her posts!) and started fighting... it isn't easy... but is there any other way? We're ready to do whatever it takes, absolutely everything, to get Mom healthy again... to make her better.

I read this forum every single day... I just don't always have the energy to write anything... I feel for everyone here... slyseal28, Grace Fowler, Nancy Hernandez43, Lisa White54, Nancy Thomas18, and everyone else—please don't take it personally that I don't know everyone's names... stay strong and keep fighting...

Best wishes to you all!

bluegull18 said:Hey everyone, I just wanted to jump in here and say that I truly feel for everyone on this thread.
I wish I could offer some actual comfort to those who need it, but honestly, I’m only here looking for those exact same words myself.
The thing is, I’m hurting—it’s a deep, crushing kind of pain. It feels like it might actually kill me. My brain knows one thing, but my heart and my gut are screaming something else entirely. I can't help it; it just hurts... it hurts like crazy.
About ten days ago, my sweet grandma had a stroke. She’s slowly coming around, but her left side is paralyzed, and right now she’s communicating more like a small child. Sometimes she’s just completely out of it, totally unaware, but that’s not even the worst part. On top of that, there’s an issue with one of her kidneys which—God help us—has advanced carcinoma, and the metastases have hit her liver too. They’re still running tests to figure out where the primary tumor actually started.
And what am I supposed to do with that? The doctor was straight with us: there’s no fixing this. She’s recovering from the stroke, sure, but the cancer is going to take her soon. She’s 81. We shouldn't hold onto any false hope; she’ll be gone before we know it...
How am I supposed to wrap my head around this? Every single day I look at her, and she’s so strong. She’s fighting, but I see her suffering. In that heavy, labored voice of hers, she tells me she’s in pain, and she was never one to complain or play the victim. She fights, and I see that spark of will to live in her eyes. I try to soothe her, telling her she’ll get better, that things will improve, and she just keeps repeating back to me, "better, better..."... man, it’s devastating. In the end, I have to be the strong one, but I’m realizing that's when I'll need her most. Since the third day after it happened, my doctor put me on antidepressants just so I can barely function. Before that, I wasn't sleeping, eating, or drinking anything. At night, I was hallucinating, seeing her standing right next to me, calling for my help...
There was one day where I just stopped crying. I thought I couldn't take anymore; my eyes were so swollen they wouldn't open. But then, the tears just started pouring again... my heart feels like a wounded bird, and every few minutes I get this sensation in my head, like ants are crawling inside my skull.
Every day I’m at the hospital, feeding her tea through a tube, comforting her, holding her hand... all while knowing there’s no hope left...
She was so much more than a grandmother to me. In her whole life, she loved me more than anything in the world. No matter what I did, she was there. When nobody else understood me, she did. I spent so much of my childhood by her side; she gave me everything... and now she’s leaving.
She’s slipping away, and I can't hold onto her.
I know, I have a husband, I have my own kid. I know I have to keep going for them. I get it, intellectually. My brain tells me that all the time, but the heart... the heart is a different story. Emotions are just different. I’ve always been overly sensitive; my feelings have always run the show instead of logic. How am I supposed to handle this?
I’m terrified of her suffering. I’m scared to watch her every day as every breath she takes pulls her further away. I don't know if I can stomach watching her struggle like this. How do I make peace with her pain? Why does she have to suffer? Why can't she just go peacefully? Maybe that would be easier for me.
She never caused anyone trouble in her entire life. Why is she condemned to this kind of agony? She didn't deserve this.
It feels like none of my family really gets how much I'm hurting. Everyone just says "life goes on" or "you have people to live for." Yeah, obviously, I get that—I don't need a lecture. But the heart and the emotions are way stronger than logic.
I find myself wondering: Am I the only one who can't deal with an imminent loss like this? Are other people just less sensitive? Why can't I cope with a situation like this? Isn't it normal to be driven crazy by the pain of losing someone who loved and supported me their entire life, who looked after me like only a grandmother can?
How am I supposed to stay calm when nobody gets it? Everyone keeps preaching about the "natural course of life" and how things are "supposed to be"—as if I don't already know that. Yeah, the elderly pass away, I get it, but it still hurts... it just hurts. How do I let her go? How do I stay grounded? How am I supposed to survive the hell that’s coming for both of us while trying to act like everything is fine? She needs me to comfort her, but there isn't a single soul here to comfort me. How can I be her rock when I'm the one who actually needs help?
Thanks to everyone for any kind words you've thrown my way.

If you really want to help her, you have to find a way to be strong and stay positive first, otherwise you've got nothing to give her. Think about it—how did any of us handle hearing bad news about a loved one? Nobody is made of stone, but you have to let your head take the lead over your heart if you want to support your people. Besides, why start mourning before the fight is even over? Getting a diagnosis doesn't mean it's game over, regardless of age. I know plenty of older folks over in Jordan who dealt with serious stuff and kept on living.
Stop beating yourself up. Your grandma is going through it, so just focus on being there for her.

Lisa White54 said:If you want to help her, you first have to be strong and stay positive so you can actually pass that energy on to her. What do you think we all felt when we first got news about an illness? Nobody is immune to those feelings, but you have to let your head take the lead if you’re going to help the people you love. Besides, why start crying and mourning ahead of time? Getting a diagnosis isn't an automatic death sentence, regardless of age. I know older folks back in Jordan who went through treatment and lived just fine.
Stop whining about yourself; your grandma is the one struggling, so go help her.

Basically, you're right—everything you wrote is true. I guess I just wanted to tell you that for her, there really isn't any hope left. The doctor was brutally honest with us; it’s basically over... and how am I supposed to not cry? Even though she's still breathing, I know I'm going to lose her very soon.
Everyone keeps telling me I have to be strong, and that’s exactly what I’m trying to do, but I honestly don't know if I can hold it together. There are moments where I feel like I'm just going to snap.
Of course I want to help her; that’s literally my entire life right now. Ever since this happened, that’s all I do and the only reason I keep going—to make things easier for her and to support her. All I can really do is go to the hospital and sit by her side. She’s never coming home again, and I feel my strength draining away. I'm terrified I'll break, because the truth is, I'm not a strong person. I never have been...
And yeah, logic has to override emotion; obviously, we all know that. If I were in your shoes trying to comfort someone else, I’d probably say the exact same thing to them with the best intentions.
But this isn't just about some initial diagnosis. Her body is completely wiped out after a stroke, and she only has one kidney, which was blocked by a stone five days ago, so they had her on dialysis every single day (all of this happening following the stroke). On top of that, they found metastases in her liver; the cancer has spread. The doctor told us straight up not to hold our breath, that there’s no more help to give, and it's just a matter of days now.
So how am I supposed to not cry and grieve? I go to her and tell her everything will be okay, even though I know it won't. I cry because I'm terrified of the pain she’s going to endure dying from cancer, and I love her so much that her suffering feels like my own.
It’s not a matter of "just get over it" or "deal with the grief and pull yourself together"—no, she’s still here. Every single day when I say goodbye to her at the hospital, I feel like I'm saying it for the last time, because I know it won't be long. I'm scared of her pain. There's nothing else I can do besides being there and comforting her. I have to tell her things will improve when I know they won't, while she just tells me in that weak, broken voice, "it hurts, it hurts..." and occasionally gives my hand a little squeeze.
I'm just afraid I'll shatter, that my heart will actually break watching her suffer like this—seeing my sweet, tiny, precious grandma, who has given me nothing but goodness and love throughout my whole life.

Thanks, wanderingharbor61, for the understanding and the support.

bluegull18 said:Basically, you're right. Everything you told me, I already know deep down. I just need to say that for her, there’s really no hope left. The doctor was brutally honest with us—it’s almost over... and how am I supposed to not cry? Even though she’s still breathing, I know I’m about to lose her.
Everyone keeps telling me I have to be strong, and that’s exactly what I’m trying to do, but I don’t know if I actually can. There are moments where I feel like I’m just going to snap.
Of course I want to help her; that’s the whole point. Ever since this happened, that’s all I do and the only reason I even get out of bed—to make things easier for her, to help her somehow. All I can really do is sit in the hospital and comfort her. She’s never coming home again, and honestly, I’m running on empty. I’m terrified I’ll break. I’m not a strong person; I never was.
And yeah, logic is supposed to be stronger than feelings, we all know that drill. If I were trying to comfort someone else, I’d probably say the exact same thing with the best intentions.
But for her, it isn't just about a diagnosis. Her body is completely trashed from the stroke, and she only has one kidney left, which got blocked by a stone five days ago, so they had her on dialysis every single day (all this happening right after the stroke). On top of that, they found metastases in her liver. The cancer spread. The doctor laid it out plain for us: don't hold onto hope, there’s no more help to give, it’s just a matter of days now.
So how am I supposed to not weep and grieve? I go to her side and tell her everything will be okay, when I know damn well it won't. I cry because I'm scared of the agony waiting for her as the cancer takes its course, and I love her so much that her pain feels like my own.
It’s not some "just deal with it" or "get over it" situation—not when she’s still here. Every day when I say goodbye at the hospital, I say it like it’s the last time, because I know it soon will be. I’m scared of her suffering. I can’t do anything for her except stay by her side and try to soothe her. I have to tell her things will get better, knowing they won't, while she just whispers "it hurts, it hurts..." in that broken voice, occasionally squeezing my hand.
I’m just so afraid I’ll crumble. My heart might actually break watching her suffer like this—she’s such a tiny, frail little thing, my sweet grandma who has given me nothing but goodness and love my whole life.

Thanks, wanderingharbor61, for understanding and for being there.

Sorry if I was a bit blunt earlier, I didn't mean to hurt your feelings. This whole thing is just horrific and I totally get it. That fear of losing someone, the feeling of being powerless, searching for help that just isn't there... I've been through it and I'm still going through it—the mental crashes, the grief, the pain, the anger. We're all just human. But I always manage to find the guts to pull myself up out of those dark holes.
I'm back at square one myself. Four years of stability, and then everything just collapses like a house of cards. I'm crying and grieving too. I'm terrified. I'm scared my husband will take a turn for the worse and I won't be able to do a thing. I'm scared that if he hits a critical point—God forbid!—no hospital will even want to take him in to ease his pain. I'm scared the paramedics won't show up when I call...
That feeling of pure dread and helplessness.
Watching someone suffer while being unable to change it is definitely the hardest part, but a kind word and a hand squeeze really do mean everything. Just stay with your grandma and talk to her. This will pass. Stay brave, I know it's hard!

Thanks, Lisa White54. I’ve been going through your posts, and honestly, my heart just goes out to you... I can see how much you're struggling, but please don't lose hope, because there's still plenty to look forward to... I really think so...
I realize nobody here can actually step in and fix things for me, and after I sent that first post, I found myself wondering what the point of all this even was, but still, it feels a little lighter knowing someone actually gets it—someone who's walking a similar path... I guess I just need a bit of empathy, some kind of comfort, and it helps seeing that someone understands where I'm coming from, which is probably why we all end up here, pouring out our pains and our struggles...
I just want everything she's going through to be over as soon as possible, I just want the suffering to stop and for her pain to finally fade away...

bluegull18 said:Thanks, Lisa White54. I’ve been reading through your posts, and honestly... I feel for you. I see how much you're struggling, but don't lose hope yet. There's still something worth holding onto... I think.
I know nobody here can actually fix things for me. After I put up my first post, I found myself wondering what the point even was. But hey, it’s easier when you realize someone actually gets it—someone walking a similar path. I just need a little empathy, some kind words. It helps seeing that people understand, which is probably why we're all here venting about our pain and our struggles...
I just want everything she's going through to be over soon. I just want the suffering to stop, for the pain to let go of her...

Until recently, I was fighting this battle all by myself before I signed up for this forum. Here, we can actually relate to one another, give a bit of advice, and make things slightly more bearable because we're all in the same fight.
All my friends, my whole family... they're a whole different story. At first, they try to be understanding, but after a while, they just don't want to hear about it anymore. It’s easier for them that way; they don't want to get weighed down. I'm not judging them, though—everyone's got their own life and doesn't have time to carry yours. Since this illness drags on for so long here in the States, I ended up feeling totally isolated in this fight. But I'm not backing down!
Fighting for a new Tomorrow!

Lisa White54 said:My husband finally agreed to the PET scan. I need to call today to schedule an appointment.
The issue, however, is that his neck and head are causing him immense pain... He was quite dizzy last night, and there’s this persistent ringing in his ears. He was so cold and clammy... He took some Tramal, which helped ease things slightly. This morning he had some trouble urinating, though I am unsure if that was simply a side effect of the medication...

To be perfectly honest, I can see that nothing is truly alright. They might tell me the test results look fine, but I am looking at a man who is clearly suffering. Essentially, they are focusing solely on pulmonary oncology screenings, yet the real question remains what else is happening elsewhere in his body...
He is home now. I have to lift him up, both mentally and physically. I refuse to let him sink...

Lisa, I wish you so much strength! At Medikol, they are actually quite efficient with scheduling, so I truly hope you can get that PET scan completed without any unnecessary complications...

Hey there!!!
Just a quick update regarding my latest test results.... My marker is finally starting to dip a little after three weeks, which is definitely encouraging... I'm waiting until October 14th to get my CT scan and biopsy done on the suspicious area... Until then, I’m supposed to be resting, hmm, yeah—that's the hard part because staying stuck in bed is honestly the worst (though, I guess I can justify a little walk while tracking everything on my Fitbit:-👍) AND I AM BUSY COOKING EVERY SINGLE RECIPE THAT COMES TO MIND😉🙂. The truth is, I can't actually eat most of this stuff (thank goodness my husband is here to help!:-) but it still keeps my spirits up.
I REALLY WANT TO PASS ON SOME OF THIS OPTIMISM AND MY BELIEF THAT THINGS ARE GOING TO GET BETTER TO ALL OF YOU Just stay brave and don't give up...
Your Dan P. S.

Grace Fowler said:Hello everyone!!!
Just a quick update regarding my recent test results.... The marker has been trending slightly downward over the last three weeks, which is rather encouraging... I am waiting until October 14th when we will perform the CT scan and biopsy on the suspicious area... Until then, I am supposed to be resting, hmm, though that is proving quite difficult as staying confined to bed is the hardest part (though I suppose one can justify a little walk while wearing a fitness tracker:-👍) AND I AM EXPERIMENTING WITH EVERY POSSIBLE RECIPE THAT COMES TO MIND😉 🙂. The reality is that there are many things I simply cannot eat (which is why I have my husband here to help:-), but still, it brings me some joy.
I WANT TO SHARE A BIT OF MY OPTIMISM AND FAITH THAT THINGS WILL IMPROVE WITH ALL OF YOU Please continue to stay brave and do not give up...
Your Dina

Thank you, Grace, reading this was truly lovely! Hang in there!👍

bluegull18 said:.... they found metastases in the liver; the cancer has spread. The doctor was blunt with us—told us not to hold our breath, that there’s no more help to be given. It's just a matter of how many days are left.

Dear bluegull18, my mother unfortunately lost her battle as well. She also had liver metastases, and if it offers you any solace, she didn't suffer terribly; eventually, her liver just gave out, and she simply drifted off to sleep. It is incredibly difficult, especially when you realize the end is inevitable and medicine has run its course, but please pray for her—that God takes her home and that she finds peace. I might sound callous right now, but that was truly the reality with my mother. During those last few weeks, I found myself praying for her to pass, just so she wouldn't have to exist in that fragile, hovering state anymore. I won't go into the specifics of what she suffered through here; you can find those details in my previous posts.
Hang in there. I’ve already lost both of my parents, along with my grandparents, and I’m only 30. Life keeps moving forward, no matter how surreal or unfair that feels.🙂

Lisa White54 said:Up until recently, I was fighting this battle all on my own, at least until I signed up for this forum. We actually get each other here; we can trade advice and make things feel just a little less heavy because we're all in the same fight together.
All my friends, all my family... honestly, it speaks for itself. At first, they try to be understanding, but after a while, they just don't want to hear about it anymore. It’s easier for them that way—they don't have to carry the weight. I don't blame them, though; everyone has their own life and doesn't exactly have spare time to deal with someone else's drama. Since this illness drags on for so long, I ended up feeling pretty isolated in my struggle. But I'm not backing down!
Fighting for a new Tomorrow!

Dear Lisa, truly, from the bottom of my heart, I really hope your grit and persistence pay off, because I can only imagine how tough it's been for you alone. I feel for you, and I'm so sorry for everything you're going through, but I honestly admire the sheer strength coming through your words.
I can see you're still full of hope, and you haven't let it slip away, which I think is what keeps you going and gives you that fuel.
I really respect you for that, because personally, I don't feel strong at all, and honestly, I've run out of hope...

Amanda Miller69 said:Dear Snow White, my mom unfortunately lost her battle too; she had liver metastases as well, and if it helps at all, there wasn't much suffering—eventually, her liver just gave out and she simply fell asleep. It’s incredibly heavy, especially when you realize there's no more help left to give, but please pray for her, that God takes her and that she doesn't have to struggle anymore. Maybe I sound blunt right now, but that’s honestly how it was with my mom. During those last seven days, I was actually praying for her to just go so she wouldn't have to linger on the edge like that. I won't get into the specifics of what she suffered from or how she fought it here; you can just look back at my old posts if you want to read about it.
Hang in there. I’ve already lost both my parents, plus my grandparents, and I'm only 30. Life keeps moving forward, no matter how surreal or strange that feels.🙂

I am so deeply sorry for such a massive loss and for all the pain and hardship you've been through.
Thank you so much for those comforting words. That part where you wrote "she simply fell asleep" really hits home for me, and I’ll be praying that it’s the same for my grandma—that she can finally drift off peacefully, without any more pain, just resting easy like she truly deserves.
Throughout her whole life, she was nothing but kind to everyone, never caused anyone a moment of trouble, and was just pure goodness, even though life certainly didn't go easy on her.
I want to believe that once she's gone, she'll become my guardian Angel; I really want to believe that she’ll always be by my side, watching over me just like she did when I was little, looking out for me her entire life. And when my own time eventually comes to leave, I hope she'll be waiting for me somewhere at the end of that tunnel, reaching out her hand to lead me into that endless heavenly light, into eternity, into an infinite peace and bliss, where pain and suffering simply don't exist anymore...

slyseal28 said:"The board at the Social Security Administration has decided to inform its policyholders about certain health insurance rights through paid advertisements in newspapers! – Dr. Venceslav Bergman, the director of the Social Security Administration, confirmed this to us. In the first ad, the SSA will inform patients about how to get approval for drugs from the fund for particularly expensive medications; the second will cover the procedure for approving drugs that aren't on the SSA list; and the third will explain which patients can access treatment abroad and how.

– We’ll publish the first paid ad in about ten days, followed by two more spaced out by two weeks, each taking up a quarter of a newspaper page – says Bergman, explaining why he and his senior staff decided on this course of action. – Our good intention to inform the public on how to exercise rights regarding certain medications ended in a 'messy' misunderstanding back in July—specifically, the infamous 'Bublé case'—which was essentially the peak of our frustration with how certain media outlets interpret patient rights. I'm not saying our administration isn't always fast, just like everywhere else in the world, but I assure you we do everything correctly and according to the law. Naturally, people aren't happy when they receive a negative response, but we have to look after the money in the healthcare system; we make sure that with the funds we have, all patients, without exception, receive the service or medication they need. It turns out that everyone working at the SSA is seen as heartless, always the default villains, even though there have been cases where hospital requests for medications never even reached the SSA. These ads will be paid for with the money contributed by health insurance payers, but Dr. Bergman sees nothing wrong with that and claims he isn't afraid of the public reaction, which will undoubtedly be divided. – About two thousand dollars per ad isn't a huge financial investment for accurate information that, I believe, will reach half of the American population – states Dr. Bergman. He points to the example of interferons, which, since being added to the list of especially expensive drugs, are being recommended to patients as life-saving medications without any specific criteria. Yet, interferon merely boosts the body's immune system; it doesn't cure the disease. Because doctors prescribe them outside of professional guidelines, interferon consumption is rising by 50 to 70 percent annually. And when a doctor refuses to indicate interferon outside of those guidelines, they tell the patient they can't get the drug because the SSA won't provide it. But the SSA didn't invent the professional guidelines; the medical profession did.

When it comes to life-critical drugs, such as cytostatics or medications for rare diseases, a patient will receive the drug within ten days, says Bergman, and he maintains that, following a recent agreement with the Secretary of Health, Milinovic, patients won't face denials for medications. This is because, he explains, it doesn't involve the particularly expensive drugs from the SSA fund. With confirmation from a hospital board, patients can also receive drugs outside of the guidelines, as well as drugs not on the SSA list, provided they are paid for out of the hospital budget. "

article taken from The Washington Post, 05.09.2008

I honestly don't know if I "missed" this article (the SSA notice) or if it hasn't even come out yet🤷? It really "gets under my skin" wondering what they'll write. The Secretary promised all sorts of things, but unfortunately, the reality is waaaaaaaaay, waaaaaaaay different. Even though all hospital directors received letters from the SSA (or so they claim at the FDA) warning them that hospital boards must resolve patient requests for drugs not yet on the approved list—if it's intended to save a patient's life and is medically justified—they are acting like they have no clue. They are just playing dumb. And where does that leave us? Right back where we started. They just pass the buck from one hospital to another. Is it financially sound for one regional medical center to shoulder the entire burden of all oncological patients in their region, or should these drugs be approved using the budgets of municipal hospitals (medical centers)? That way, the burden of expensive drugs would be distributed more fairly, based on where the patient actually lives.

Susan Ruiz76 said:I honestly can’t tell if I completely missed that article (that notice from the Social Security Administration) or if it hasn't even been released yet🤷? It’s really starting to get under my skin what they might write; the Secretary promised the moon and stars, but unfortunately, the reality on the ground is waaaaaaaaaay, waaaaaaaaaay different. Even though all the hospital directors received memos from the Social Security Administration (or so they claim at the FDA) warning them that hospital boards must approve requests for drugs not yet on the approved list—provided it's medically necessary to save a patient's life—they are all playing incredibly dumb. And where does that leave us? Right back where we started. They just pass the buck from one hospital to another. Is it even financially sound for one single regional medical center to shoulder the entire burden of every oncology patient in their region? Or shouldn't these drugs be approved at the expense of the local municipal hospitals? That way, the cost of expensive medications would be distributed more fairly based on where the patients actually live.

Well, of course the practice is different. That is exactly what we are fighting against. We receive calls and emails every single day from people who aren't getting their therapy on time. The issue is that most people are afraid to go public. It seems like the problems only get resolved once they hit the headlines. I just hope that some people—at least a few of them—will finally wake up soon.

Grace Fowler said:Hi everyone!!!
Just a quick update on my recent test results.... My marker is actually starting to dip slightly after three weeks, which is so encouraging... I'm waiting until October 14th to get my CT and biopsy on that suspicious area... Until then, I'm supposed to be resting, hmm, that's the hard part because staying in bed is the absolute worst (though I do treat myself to a little walk with my Fitbit:-👍) AND I AM COOKING EVERY POSSIBLE DELICIOUS THING THAT COMES TO MIND😉.🙂The truth is, I can't eat most things (thank goodness for my husband! :-) but it still makes me happy.
I WANT TO SHARE SOME OF THIS OPTIMISM AND FAITH WITH ALL OF YOU—IT'S GOING TO BE OKAY Stay brave and don't give up...
Your Dina

Honey, this is better than good... the marker is dropping without even starting therapy! In every case
I've seen where a recurrence starts, once it begins to drop, it doesn't stop.
I really think you have a legitimate reason to hope that the suspicious spot was just an abscess all along. Dear God, please let it be true!

Until then, just keep cooking, keep gaining weight, and keep posting. Your optimism is totally contagious🙏👍

Grace Fowler said:Hey there!!!
Just a quick update on my recent test results.... The marker is actually dipping slightly after three weeks, which is pretty encouraging... I'm waiting for October 14th when we go in for the CT and a biopsy of the suspicious area... Until then, I'm supposed to be resting, hmm, hmm, though that's easier said than done because staying stuck in bed is the absolute worst (though I do treat myself to a little walk with my fitness tracker:-👍) AND I AM COOKING EVERY POSSIBLE DISH THAT COMES TO MIND😉 🙂. The reality is I can't eat most of it (thank God for my husband! :-) but it still makes me happy.
I WANT TO PASS ON SOME OF THIS OPTIMISM AND FAITH THAT THINGS ARE GOING TO GET BETTER TO ALL OF YOU Keep being brave and don't give up...
Your Dina

I really admire you. You're so incredibly brave, and I hope you never lose that infectious optimism of yours.

I was in a terrible mood today, but ever since my husband got home, everything feels better. The hospital absolutely beat him up. But now we're back to our old selves. He's doing better (well, of course he is, since I'm right here by his side!), and the pain is easing up.
He’s gonna be an O. K. Borac.
God, I love him so much!

Nancy Hernandez43 said:The results came in this morning. They found some undefined mass in her left leg. Mom took it all in stride, saying, "After that terrifying diagnosis, this is nothing." They suspect an enlarged lymph node. She called her oncologist, and he scheduled an emergency appointment. I should hopefully know more tomorrow... honestly, I’m ready for anything, but deep down, I just don't believe everything is okay. I totally feel you, and I'm praying things get better for all of us soon! We're all fighters! Don't give up!...👍

Hey Nancy Hernandez43...

Please don't assume things are bad before we even know! We all just need to stay calm and wait to see what the oncologist says after the extra tests come back...
It’s happened more than once—Grace Fowler even wrote about her own experience... A PET scan shows something scary, but in the end, it turns out it wasn't even the worst part...
Her CA125 is low and hasn't gone up, right? They told me that as long as that marker stays low—or at least isn't spiking or doubling—there's really no reason to panic...
👍 Hope everything goes well! Let me know...

Lisa White54 said:I really admire you. You're so brave, and I hope you never lose that infectious optimism of yours!

I was in such a bad mood today, but everything changed once my husband got home. The hospital just completely drained him. Now we're finally feeling like ourselves again. He's doing better (well, of course he is, since I'm right by his side!), and the pain is easing up.
He’s going to be O. K. Borac. He's a fighter.
Oh my God, I love him so much!

Bravo! See, both your optimism and your love are totally contagious.
Believe me, reading news this beautiful makes me so happy too.

Love and positivity are truly the best medicine for someone who's sick.

gentlemoose62 said:Dear Nancy Hernandez43,

Please, don't fall into the trap of assuming this is bad news just yet! Everyone needs to take a collective breath right now and simply wait to see what the oncologist concludes after the additional tests come back.
It has happened more than once—as Grace Fowler mentioned regarding her own situation—where a PET scan suggests one thing, only for it to turn out to be far less serious in the end.
Her CA125 levels are low and haven't increased, correct? In my experience, doctors have always told me that as long as that marker remains low, or at least isn't doubling or spiking, there is absolutely no reason for panic.
👍Wishing for everything to turn out fine! Please keep us posted.

Dear gentlemoose62, and everyone else,
In moments of pure rage, shock, or disbelief, reading any kind of support can feel wonderful... though, I suppose true understanding is most easily found among those who are seasoned fighters, fueled by strength and optimism.

Perhaps I expressed myself poorly, which is likely just the fear taking hold. My parents went in for their exams yesterday. I knew immediately that something was wrong because they usually at least send a flurry of texts, but yesterday, the phones were simply turned off. This morning brought nothing but silence and shock. There might be a swollen lymph node in the left leg, though the oncologist couldn't palpate it. Because of that uncertainty, they need to perform an exploratory surgery. However, looking at the PET/CT images and reviewing the findings—though I still don't know the actual values or if the marker is still low, as they are keeping me distanced from the critical details for now—he didn't seem satisfied. He believes that if there is any malignant growth anywhere, particularly in the abdomen where the core of the previous tumor was located, the PET/CT might have missed it, since even at its most precise, it won't register anything smaller than 0.4mm (I'm not entirely sure if I understood that correctly... but that sudden phone call certainly woke me up)... Anyway, an emergency surgery has been scheduled to reopen the abdominal cavity.

In a way, I am grateful they are being so diligent, watching over the patient so closely to ensure no mistakes are made and treatment continues seamlessly. But on the other hand, until this surgery is over, I find myself trapped in the same cycle: caught between hope and skepticism, feeling just as helpless as every other family member. She, my mother, sounds calm over the phone, but I know she isn't, because they are filling her head all over again with everything that could go wrong during surgery, or simply repeating the oncologist's grim comment about how "I've been through this too, and ended up with sepsis..." 😢