Resources and support for families dealing with cancer and serious illness

Betty Allen65 said:Within two weeks, they told her she was dying and there was absolutely nothing left to be done... a sentiment confirmed by seven other major cancer research clinics worldwide.
Then, we reached out to a private clinic in San Diego... "Unfortunately, we don't have enough experience treating this specific type of sarcoma, so we can't help you."
Next, a private clinic in Northern Spain... "Regrettably, her case is exceptionally rare..."

To be precise, the issue is that the subtype of sarcoma my baby had is one of the rarest on the planet. My dearest was number 19... The longest any person in the US has lived with this was someone who passed away in their early 30s, even with the regimen of heading back to the hospital every year or two for treatment.

My beautiful child became an angel on December 3rd, 2006.

So, that’s our story.

Perhaps you've mentioned it somewhere already (and I just haven't been able to find it), but what specific type of sarcoma was your precious girl fighting?

Betty Allen65 said:I honestly admire your strength every single time

It’s a rollercoaster of emotions.😘

I truly don't know—it actually makes me feel sick just trying to imagine being in your shoes. I'm losing my mother, who has been such a massive pillar in my life, and I'm losing all those future moments where she should have been there, both in spirit and in person. It kills me knowing she won't see her grandkids, whom she misses so much... though at least she met her grandson and loves him dearly, and even as she's dying, she finds peace in that. But losing a child—in any way possible—is the absolute worst, most agonizing, most brutal thing life can throw at you. It's something you never truly come to terms with. My nurse often tells me that now that I've gone through this with my mom, there isn't anything left that can shake me, unless, God forbid, something happens to my own child. And that is the raw truth; none of the little things that used to drive me crazy affect me anymore.
The only thing that absolutely terrifies me is the thought of passing down some bad genes—I'm likely a carrier, given how many people on both my mom's and dad's sides have battled and died from cancer—to my own child. It haunts me constantly. I find myself wondering why God would put such a good man through this twice. First, when he was just a five-year-old boy losing his father (to melanoma back in 1951, which is easily treatable today), which completely altered his life trajectory because they were poor; and now, he's losing his wife to cancer too. How am I supposed to believe this won't happen to me? My faith is feeling pretty shaken right now.😢

I really don't know what your days are like, Betty, or how heavy your heart feels, and I genuinely wish I knew how you managed to hold it together without breaking. I know you have another child, and the only thing that makes sense to me is that they are the reason you stay strong—and I'm sure your little girl would want the same. It's so incredibly hard, I know for sure, and that's why I admire you. Be proud of yourself.🙏

slyseal28 said:Maybe you’ve already mentioned this somewhere—and I clearly missed it—but what specific type of sarcoma was your loved one facing?

Histiocytic sarcoma
(The tricky thing about this subtype is how prone it is to mutating under therapy... basically, it hits a wall for a few days, adapts, and then keeps right on going...)

slyseal28 said:Does anyone know how the radiation procedure actually works?

My husband had his CT verification this past Friday. Now we’re just waiting for the doctor to call us—will they confirm if the current plan is good to go, or will he have to go back in for another CT scan?😕

I'm just trying to understand the process. If the CT verification comes back fine, what happens next? Do they contact you for the radiation sessions, or are you supposed to schedule something yourself?

And is there usually a long wait for radiation? Sister Smilje told me it could take a whole month!?😲

Forgive me, I haven't been following your situation closely, so I'm not sure what area needs treating.
My father went in last month for radiation on brain metastases, and they told him it would be a month and a half wait 😕. We turned our entire lives upside down—and despite having a really strong connection, he still ended up waiting 10 days. My advice to you: if you have someone who can pull some strings, use them. If you don't, keep pushing. Unfortunately, that's just how the system works here in America.😠 😠 😠

northernfox9 said:Forgive me, I haven't been following your specific situation, so I'm not entirely sure what needs radiation.
My father went last month to have radiation for brain metastases; they told him it would be a month and a half wait 😕. We turned the whole city upside down, and with a strong connection, he still ended up waiting 10 days. My advice to you: if you know someone, pull some strings. If you don't, start looking. Unfortunately, that’s just how the system works here.😠 😠 😠

Thanks for the info. 🙂

I finally sat down with the doctor, and naturally, the news is just devastating:

-My husband has synovial sarcoma in the mediastinum, and they can't use cobalt radiation on him; he needs a linear accelerator instead. This treatment is supposed to be handled at either Petrov Hospital or the Cancer Institute. However, the machine over at Petrov Hospital is currently OUT OF ORDER—it’s undergoing repairs right now. 😠
The doctor mentioned that given his condition and the diagnosis, he’ll try to squeeze him in early. He's certain we can move things up so he doesn't have to wait for the standard queue, which, according to the doctor, is a seven-month wait!
But here’s the kicker: even trying to jump the line is impossible until that machine at Petrov Hospital is actually back online.
The only other thing he suggested was that if we happen to know anyone at the Cancer Institute, we should reach out there to see if they can move faster.
So, that's the situation with the radiation.

p.s.
Of course, I am going to fight tooth and nail to find a connection, but honestly, it’s just not fair.

slyseal28 said:I finally sat down with the doctor, and naturally, the news is devastating:

-my husband has synovial sarcoma in the mediastinum, and they can't use cobalt radiation on him; he needs a linear accelerator instead. This treatment is supposed to happen at either Petrov Hospital or the Cancer Institute. The problem is, the machine over at Petrov Hospital is currently OUT OF ORDER—it’s undergoing repairs right now. 😠
The doctor mentioned that given his condition and the diagnosis, he’ll try to squeeze him in early, hopefully before he has to follow the standard protocol. And according to the doctor, the "standard" wait time is seven months!
But here’s the kicker: even trying to jump the line is impossible until that machine at Petrov Hospital is actually up and running again!
The only other thing he suggested was seeing if we know anyone at the Cancer Institute to see if we could pull some strings there to speed things up.
So, yeah, that’s the situation with the radiation.

p.s.
Of course, I'm going to fight tooth and nail to find a connection, but this is just plain unfair!

😲 That is absolutely horrific. Listen, everyone, we have to do something to bring public attention to this because it’s unbelievable. What vpavi has been dealing with regarding her husband—and what she's still enduring—is unacceptable. Making critically ill patients wait for radiation when every single second is precious? It’s outrageous. And the way these patients are being handled—for example, both the husband and my own mother don't even have a dedicated neurologist monitoring their condition—this is enough to warrant a massive indictment! 😠

slyseal28 said:I finally saw the doctor, and of course, the news is devastating:

-my husband has synovial sarcoma in the mediastinum and they can't use cobalt radiation; he needs a linear accelerator instead. That treatment happens at either Petrov Hospital or the Cancer Institute. However, the machine at Petrov is currently OUT OF ORDER—undergoing repairs right now. 😠
The doctor mentioned that given his condition and diagnosis, he’ll try to squeeze him in early—definitely before we go through the standard route. And according to the doctor, the standard wait is seven months!
But even trying to jump the queue is impossible until that machine at Petrov is back online!
The only other thing he said was to see if we know anyone at the Cancer Institute to ask there; maybe it could be faster.
So, that's the situation with the radiation.

p.s.
Of course, I’m going to fight tooth and nail to find a connection, but honestly, it just isn't fair!

Hmm... I didn't even get an answer regarding what kind of radiation my father was receiving; I just got this condescending look, like: "well, it's head radiation".😕
It makes you wonder who the crazy one is here...
Nobody asks if it's fair or not—nobody asks you anything. Some people don't even "have time" to give you the most basic information. Every time I went to ask something, their expression basically said: "Go on, go do your job, why are you sticking your nose in ours?"
The only one who was remotely "approachable" was Dr. Janevski from Jordanovac, but even then, just one minute after my dad's surgery, he stood there halfway up the stairs in front of everyone and gave me the prognosis loud and clear, stone-faced: "You don't even need to wait for the pathology report; he has two months left, I can see it and I know it." And just like that, dead cold, he turned and walked away... I couldn't even manage a polite thank you, because thank you for what?! 😠 😠

Two months and seven days have passed since then. My father is alive, he finished his radiation (I still don't know exactly what kind), and he is recovering—and despite the brain metastases, that miserable pathology report ended up being NEGATIVE.
Thank you, Doctor!!!👍

There is also some equipment over at Mayo Clinic, so maybe try to find out what kind they use there...

At the Cancer Institute, there might be a chance if you can find at least one nurse (provided she gets along with her department head) to get him placed in a different ward (that was the backup plan for my dad).

Gritting teeth and no giving up!😘

northernfox9 said:Hmm... I didn't even get an answer regarding what kind of radiation my father was receiving. Instead, I just got this condescending look, as if to say, "it's just head radiation."😕
It makes you wonder who the crazy one actually is here...
Nobody asks if it’s fair or not; nobody asks you anything. Some people claim they "don't have time" to provide even the most basic information. Every time I went to ask something, their expression said: "Go on, go do your job, stop sticking your nose in ours."
The only one who was remotely "approachable" was Dr. Janevski from the Cancer Institute. A minute after my father’s surgery, right there in front of everyone halfway up the stairs, he delivered the prognosis deadpan to my face: "You don't even need to wait for the pathology report; he'll live for two more months, I can see it and I know it." And just like that, cold as ice, he turned and walked away... I couldn't even muster a polite thank you, because thank you for what exactly?! 😠 😠

Two months and seven days have passed since then. My father is still alive; he finished his radiation (I still have no idea what kind it was) and is recovering. Despite the brain metastases, that unfortunate pathology report came back NEGATIVE.
Thank you, Doctor!!!👍

There is some sort of machine over at Reva, so try to find out which one...

At the institute, there might be a chance if you can find a nurse—assuming she gets along with her department head—to get him moved to a different ward (that was our backup plan for my dad).

Grin and bear it, and there is no giving up!😘

When we were preparing to meet our instructor for information, I actually wrote down a list of about 15 questions on a piece of paper. I handed it to him and insisted he answer every single one—and he actually did (though he chuckled a bit and remarked that I should have phrased them as yes/no questions so I could just circle them)

As for the equipment at Reva, they only have cobalt bombs and gamma radiation.

The machine that my Pigeon needs is located at Petrov Hospital (which is part of the main medical center).

Regarding the waiting list, the delay is absolutely horrifying! It's awful!

But, of course, there is no giving up.👍

Angela Wright said:😲 It’s honestly appalling. My friends, we have to find a way to make the public realize what’s actually happening here; this is just unbelievable. What Angela has been going through—and is still enduring—with her husband, combined with the agonizing wait for radiation treatments for patients who don't have a single second to waste, is just wrong. The way these patients are handled—for instance, neither her husband nor my mother even has a neurologist monitoring their condition—it’s enough to warrant an indictment! 😠

I am trying everything I can to protest. Today, I attempted to draw a parallel on my blog regarding what people actually choose to rally about. I was listening to the radio earlier and heard them reporting on how Luka Oman is protesting against the cruelty toward chickens. Seriously???😕
Don't get me wrong, I love animals, and more power to those chickens, but there are people waiting over a month for life-saving therapies and absolutely nobody is making any noise about it!!! I was actually quite saddened by a comment on my article calling me "malicious" (I won't quote the whole thing here, which is why I provided the link).

I'm at a loss for words. I feel quite low right now.😢

slyseal28 said:I’m trying everything I can to protest. Today, I even attempted to draw a parallel on my blog regarding what people actually choose to rally about. I was listening to the radio earlier and heard them reporting on how Luka Oman is protesting against the cruelty faced by chickens. Are you kidding me???😕
Look, I love animals—and honestly, props to those chickens—but we have people waiting months for life-saving therapies and absolutely nobody is making a sound about that!!! It actually broke my heart to see the comments on my article, calling me malicious (I won't quote the whole thing here, which is why I provided the link).

I don't even know what to say. I just feel completely defeated right now.😢

Let the chicken enthusiasts deal with their chickens! That man views this as his own personal tragedy, so fine, he stands up for them. But while he fights for poultry, we stay silent for our own PEOPLE! I think the issue lies within us; we stay quiet about real, devastating problems while watching others obsess over things that seem totally trivial to us.

So let's just raise our voices and lock ourselves in cages instead!

I say we reach out to the "Working lunch" newsroom; I bet they’d actually care about these kinds of issues.
We can give it a shot, but we can't all call at once—someone needs to lead. I am willing to step up and do it, but I can't just go around citing anyone's case based on "he said, she said." I need you guys standing behind me, so if you are called upon to testify to your own story, you have to be ready.
Post your response here if you're in. Something has to be done, because people are dying in droves because of this "work" system.

Angela Wright said:Let the hens worry about the chickens! This man is living through this as if it were his own personal tragedy, yet he’s out there fighting for them—for the little guys—while we just sit here in silence for our OWN PEOPLE! I honestly think the issue lies with us; we stay quiet about the actual, heavy problems while watching everyone else obsess over things that, in our eyes, are completely trivial.

So let's speak up; let's be the ones trapped in the cage instead!

I actually think the editorial team at "Working lunch" would be interested in these kinds of questions.
We can certainly try, but we can't all call at once; someone has to take the lead. I am willing to step up and do it, but I can't just go around citing people's private medical cases based on "he said, she said"—I need you all standing behind me. That is, if you are eventually called upon to testify to your own story.
Speak up here if you're in. Something has to be done, because people are dying en masse because of this entire "work" system.

I can testify!

Angela Wright said:Let the hens worry about the chickens! This man is living through this as if it were his own personal tragedy, yet he stepped up for them—for those damn chickens—while we just sit here in silence for our OWN PEOPLE! Honestly, I think the problem lies with us; we stay quiet about the real issues while watching everyone else obsess over things that are completely trivial in our eyes.

So let’s raise our voices instead of locking ourselves in a cage.

I actually think the "Working lunch" editorial team would be interested in these kinds of questions.
We can try, but we can't all call at once; one person has to lead. I am willing to take that step, but I can't go around mentioning people's private medical cases based on mere "he said, she said." I need you all standing behind me—meaning, if they call, you have to be ready to testify to your own story.
Speak up here if you're in. Something has to be done, because people are dying en masse because of this entire "work" system.

I’m suggesting a face-to-face meeting, if you have the time and the will. Maybe Monday, once Easter has passed? Or perhaps we wait until Tuesday or Wednesday when I’ll have definitive info on whether the equipment at Petrov Hospital is back online. Then I can give you a precise timeline for when my Pigeon will be next in line for radiation (black and white, plain and simple). Of course, I’ll do everything in my power to bypass the queue, but that doesn't mean I want to dwell on it. There are people out there who don't have the luxury of taking shortcuts. For their sake, and for all of ours, this needs to be brought into the light.

What do you think?

slyseal28 said:I’m suggesting we meet up face-to-face if you have the time and the drive. Maybe this coming Monday once the Easter holidays wrap up? Or perhaps we wait until Tuesday or Wednesday when I'll have a definitive answer on whether the machine at Petrov Hospital is back online. That way, I can give you a concrete timeline for when my Pigeon will be scheduled for regular radiation (black and white). Obviously, I’m going to pull every string necessary to bypass the line, but that doesn't mean I want to stay stuck in it. There are people out there who don't have the luxury of taking shortcuts. For their sake, and for ours, this needs to be brought into the light.

What’s your take?

Whatever works best for you and everyone else—we can definitely meet up after Easter and even call in a reporter so we can lay everything out clearly.

Angela Wright said:Whatever works best for you and everyone else—we can definitely meet up after Easter. We could even reach out to a journalist to come by so we can walk them through everything properly.

It's worth it, 👍

Betty Allen65 said:Honey, don't flatter yourself
you aren't provoking me
I'm just admiring how stupid you are

You claim you're 44... but you act like a 7-year-old brat

Go ahead, enjoy yourself

Sorry about what I said earlier, I was speaking too fast. And there's nothing for me to "enjoy" here.

Angela Wright said:slymoose4, thanks again for being willing to share information about this treatment method. I also ask you to understand the skepticism from people who are directly hit hard by cancer. It’s happened more than once where they've had a close encounter with all sorts of "methods" that did nothing but torture their loved ones, offering false hope when there was zero effect. I don't think Una was provoked by the method itself, but rather how you presented it: "my people, I can't believe you don't know about this yet"... It felt a bit like someone was telling us we were stupid or blind. Every single one of us here has done—and continues to do—everything possible to help our loved ones in ways most people couldn't even imagine, not to mention reading the literature and consulting specialists all over the world, not just here.
Una is a woman who recently lost her precious little child, so can you imagine how devastating and soul-crushing it would be for her if she thought she could have saved her child through what you're presenting, and that this cure was within reach the whole time without her knowing? Because realistically, intellectually, she believes—just like most of us—in scientifically proven studies. I think you can find arguments for or against anything, but we need to stay grounded in reality, otherwise, we're all headed straight to hell.
As I wrote before, helping cancer patients is very slippery ground, and it’s easy to end up in hell through good intentions. That's why it's simply best to present what you believe is good very carefully and let people decide for themselves if they want to try it or not. Your mission of doing good ends there, and any extra persuasion usually backfires. Personally, I only believe in God's will, and that through Him, even an apple could heal (but that's just me, others aren't like that).
Thanks again, and just so you know, I'll try giving this to my mom... It won't hurt her, and I see a big plus in this method too.

Yeah, sometimes I speak before I think. You're right, and thanks for the advice.

I want to help, but these methods are like a bull in a china shop.

Best,

Just like it’s easy for me to accept that a single grain of wheat dies in the soil only to become a lush field of wheat and
produce new grain, it’s just as easy to believe that a wonderful soul, someone who
passes away on this earth, will rise to a new life in a paradise overflowing with joy.

Phil Bosmans-Taj says the incredible God

HAPPY AND BLESSED EASTER to everyone on the forum!

Yesterday was heavy. Today feels just as heavy. My dad was admitted to the hospital, and we were met with those devastating words from the doctors that so many families know too well: "Unfortunately, it’s reached the final stage, and you need to prepare for the worst..." It honestly feels surreal, like I'm watching a movie. You hear lines like that in cinema, not in real life. I spend my time scrolling through forums, reading about people facing situations far more harrowing than mine—especially when I read about parents dealing with their children's illnesses—and I try to tell myself that this is just part of the human condition. That we all face loss and carry our own crosses. But how? Can someone please explain to me how? How do you carry on without someone so close to you? How, and when, does anyone actually make peace with the fact that things had to turn out this way? I can't wrap my head around the reality of it... that he is actually leaving... I feel completely helpless. And what kills me most is that I don't even have the strength to be strong for him. I simply don't have it.😠

Brenda Richardson33 said:Yesterday was so heavy... today feels just as heavy. My dad was taken to the hospital, and then comes that dreaded sentence we've all heard from doctors who mean well but deliver the worst news: "Unfortunately, this is the final stage, and you need to prepare for the worst..." Honestly, it feels like I'm watching a movie. Those are lines you hear in cinema, not in real life. I spend my time scrolling through forums, reading about people facing situations far more devastating than mine—especially when I read about parents dealing with their children's illnesses—and I try to tell myself that I should understand. That we all face mortality, that everyone carries their own cross. But how? Please, someone, just explain to me *how*. How does one simply continue living without someone so close? HOW and WHEN does anyone truly come to terms with the fact that it just had to be this way? I can't wrap my head around the reality of it... that he's actually leaving... I am powerless. And what kills me most is feeling like I don't even have the strength to stay strong for him... I just don't have it right now.😠

Sending you a hug, a hand to hold, all my strength, and nothing but positive thoughts.