Support resources for families dealing with cancer and other serious illnesses

Kimberly Wright said:I read somewhere that some people have actually been trying to get refunds from Medicare...
If anyone happens to have any insight regarding this option, please reach out. I really need to pinch every single penny right now; this therapy is going to be a long haul, and heaven knows how many other unexpected expenses are going to pop up along the way.

I actually requested a refund, and they went ahead and gave me my money back. 🙂
There was a strong suspicion that the cancer had returned, so there was absolutely no way I could sit around for six months just waiting for my turn through the Medicare referral system. 😲 I've officially thrown in the towel. I'm done. $1100 I finally managed to get my appointment scheduled, though it took two whole days of waiting around just to get in line.
Sure, you can wait nearly six months if that's what it takes, as long as the money actually hits your account in the end.
I initially headed over to Medicare to meet with their legal counsel. She advised me that I shouldn't bother with any of those standard pre-printed forms; instead, she told me to just draft a formal request on plain white paper. The plan is to attach copies of all my medical records to that letter and then hand everything back to her directly.

I actually have the request saved in my archives, so if you want to take a look at how I drafted it, just shoot me a PM with your email address.

@feralridge3/">@@feralridge3
do you have an email 🙂

Kimberly Wright said:@feralridge3/">@@feralridge3
you have the email 🙂

Yeah, yeah, you have it too. 😉
Now that I've actually gone back and reread my notes, I realized I was looking at the MRI results
which doesn't really change the situation regarding the request I sent over to your email.

feralridge3 said:Yeah, you've got some too. 😉
Now that I've gone back over those notes, I actually ended up going with the MRI,
which doesn't really change much regarding the request I sent over to your email.

Honestly, honey, 🙂 😁

Olivia White75 said:Have you tried calling Boise? My mom needed an MRI a little while back, and while they had her waiting two months in Seattle, they could get her in the same week in Boise! And that was all just using her standard insurance referral. I'm not sure if they have a CT scanner there, but it doesn't hurt to give them a quick ring and ask.

I gave them a call, and apparently their MRI machine won't even arrive until next spring.
Could you please check with your mom to see exactly where she went and if it was definitely an MRI?
Thanks! 🙂

jadesailor14 said:I gave them a call and they told me the MRI machine isn't supposed to arrive until next spring
Could you please, please ask your mom where she went exactly and if it was actually an MRI?
Thanks! 🙂

Well, I just checked in with her and I totally messed up the details! So, it turns out she went to Asheville for the CT scan using a referral, but then she went to NYC to get the MRI done privately at Diagnostika, and it costs about $333 per segment

Kimberly Wright said:thanks for the reply 🙂
i'll give that a shot

I forgot to mention—you’ll need to attach the receipt from the exam too.😉

For an MRI, I'd really suggest the Neuron clinic over in the Šalat area... they're quick, prices aren't higher than anywhere else, and they actually have a 3T machine—the only one like it in the US. (most others are just 1.5T).

lonedriver123 said:I totally forgot to mention that you'll need to attach the receipt from the exam itself.😉

Regarding the MRI, I highly recommend the Neuron clinic over in the Šalat district. You can get seen pretty quickly there, and their rates aren't any higher than the other places. Plus, they actually have a 3T machine—it's the only one of its kind in the whole country. Most other facilities are stuck using 1.5T machines.

With a referral, it takes about five months, and once you pay, you're in within two days. 🙄
I went through this process myself about six months ago.

😕 🤷 This absolutely sent my blood pressure through the roof!!!

Olivia Miller said:😕 🤷 Reading this absolutely sent my blood pressure through the roof!!!

Same here. 😠

Angela Wright said:Me too. 😠

The doctors have finally weighed in...

I went back and took a closer look at that article, and let me tell you—it isn’t actually the official stance of the U.S. Department of Health and Human Services.

Even that specific article includes this fine print: Disclaimer : Recommendations made by The USPSTF ara independent of The U. S. government They should not be construed as an official position of The agency for Healthcare research and quality or The U. S. Department of health and human Services

Here is the link to the article.

The journalist who put this out there really should have been explicit about that.

the saga continues...
I honestly thought I’d be feeling a bit more overwhelmed today, or at least find myself reaching my breaking point, 🙂

after that whole ordeal with AT&T and trying to pin down that specific start date for my therapy—well, fat chance! Now we have to go through with a PET scan, aaaaaaaa
it feels like we're right back at square one! 😱

I truly don't understand how the rest of you manage to navigate all this madness 🤷
I end up stopping by my primary care doctor's office at least once a week just to pick up various referrals. Thank God I have a doctor and a nurse who actually have hearts, leaving my paperwork ready so I can just swing by after work without waiting forever.

But for every single appointment with the oncologist, I have to schedule it manually. Even though they claim you can book via fax or email—which I did try, by the way—it simply doesn't work 😠 and then it's the same old song and dance: begging my boss to let me "just run out for a second" to handle something, and then having to plead at the front desk just to get on the schedule. If I hadn't gone down there personally yesterday to set up my mom's appointment, who knows when they would have even been seen while waiting for someone to respond to a fax.

It honestly scares me to think about what the logistics will look like once the chemo and radiation sessions actually begin 🤷
how does medical transport even work?

Kimberly Wright said:the saga continues...
I honestly thought today would be the day I’d finally snap or at least lose my mind from the stress 🙂

After that whole mess with AT&T and trying so hard to snag that specific start date for therapy—fat chance! Now we have to go get a PET scan, argh!
It's all starting over! 😱

I truly don't understand how the rest of you manage to push through all this nonsense 🤷
I'm heading to my primary care doctor at least once a week just to pick up various referrals. Thank God I actually have a doctor and a nurse who have hearts; they leave my paperwork ready so I can just swing by after work without waiting forever.

But for every single oncology appointment, I have to schedule it manually. Even though there's an option to book via fax or email—which I tried, by the way—it absolutely does not work 😠 and then it's the same old story: begging my boss to let me slip away "just for a second" to handle something, and then begging the front desk just to get on the schedule. If I hadn't personally shown up yesterday to book my mom's appointment, who knows when she would have been seen while we sat around waiting for someone to acknowledge a fax.

The mere thought of what this is going to look like once chemo and radiation kick in scares me 🤷
How does healthcare transport even work?

Honey, we survive because we've already accepted that this is just how it is.
That's why we're here—to support each other and point each other in the right direction, right? 😉
Healthcare transport works like this: your doctor writes up a referral, and then you call them around 7 AM on the day you need a ride. They drive around town picking up everyone headed to the hospital. They aren't exactly reliable when it comes to timing, either. They practically took my mother on a scenic tour of the city before she finally made it to her MRI appointment.

Angela Wright said:Honey, we operate on the assumption that things are going to be this messy from the get-go.
That’s really why we have this space, isn't it? Just to offer some comfort and maybe point each other in the right direction. 😉
The way healthcare works here is that your GP writes you a referral, and then you call the ambulance service around 7 AM on the day you need them, and they just circle the city picking up everyone who needs a lift to the hospital. They aren't exactly known for being reliable about timing, either. They practically took my mother on a joyride before she could actually make it to her MRI appointment.

The whole healthcare setup sounds quite fascinating and thrilling, doesn't it? 😁

I honestly can't even find the mental bandwidth to focus on taking care of my mother because I'm constantly bogged down by these endless administrative headaches. It’s incredibly frustrating, and I find it hard to accept a situation where she has been paying into health insurance for thirty years, plus extra premiums, only to be denied timely and decent healthcare when she actually needs it. 😠

We booked a follow-up with a gastroenterologist a full month in advance for an appointment in December.
And then we spent five hours waiting on that Monday for a doctor who didn't even bother showing up to the clinic, even though he’s supposed to be there once a week!!
Instead, we were seen by some random doctor who couldn't tell us a single thing, so we ended up leaving without getting anything done. We were told to come back next Monday with all the test results gathered together, but do I even need to mention that the doctor wasn't there again either? 👎
His nurse in the office didn't even realize he had been out in New York City for several days already. 👎
That time, it wasn't even the same doctor from the previous Monday; we were handed off to a third person entirely.

Since my mom asked me to stay calm, I didn't go looking for the department manager. It's honestly shameful. 👎

It's a good thing I have the stamina to handle spending entire days wandering through hospitals, but it's wild how little consideration they show for sick people—who, by some miracle, happen to make up the majority of the people in these buildings.

And then someone will claim there's no money left, which is why our healthcare system is such a mess. During those five hours we sat there waiting, I managed to memorize almost every doctor, nurse, and staff member in that wing. Not because they were helpful, mind you, but because the crew spends most of their time pacing the hallways, gossiping, and grabbing coffee at the cafe. 👎

Kimberly Wright said:this whole healthcare setup sounds both fascinating and infuriating.😁

I honestly can't even focus on my mother because I'm constantly drowning in this endless administrative nightmare. It drives me absolutely insane—my mom has been paying into the system for 30 years, she pays for supplemental insurance, and yet she still can't get timely or decent healthcare when she actually needs it.😠

We booked a follow-up with a gastroenterologist a full month in advance for an appointment in December.
We sat there waiting five hours for a doctor who didn't even show up that day, despite having office hours once a week!!
Instead, we got some random doctor who couldn't tell us a single thing, so we left without getting anything done. They told us to come back next Monday with all our test results gathered. And do you want to know if the doctor showed up then? Nope, not a sign.👎
Even his nurse had no clue he’d been out in New York City for several days already.👎
That time, even the doctor from the previous Monday wasn't there; we were seen by a third stranger instead.

Since my mom begged me to just calm down, I didn't go looking for the department manager. What a disgrace.👎

Luckily, I have the stamina to handle spending entire days bouncing between hospitals, but the sheer lack of respect for sick people—who, by some miracle, make up the majority of people in these buildings—is staggering.

And then people claim, "Oh, there's no money, that's why healthcare is like this." During those five hours we spent sitting in that hospital, I memorized every single doctor, nurse, and staff member in that wing. Why? Because the entire crew was just wandering the halls, gossiping, and sipping coffee in the cafeteria.👎

Honey, listen to your wise mother and just breathe. I am telling you this most seriously, because if you don't, everything is just going to spiral out of control. Your mom is handling things incredibly well, and that’s what matters!
Everything you're saying is spot on, and you have every right to be furious, but right now, that anger isn't helping you, because you simply don't have the bandwidth for it. Your mom needs you focused. You aren't going to fix the systemic failures of the country. That's what advocacy groups like ours exist for—we fight the battles with the Department of Health and Human Services and insurance giants every single day. Believe me, these problems are so deep-rooted it would take a lifetime of work to untangle them.
What you *can* do is accept the reality of the situation and navigate it however you see fit. I'm certain you're smarter than most of the hacks who designed this system, so I know you'll figure a way through.
As for the system itself: expect the absolute worst, rely on yourself and God's providence, and hope for the best.
Be persistent, be a nuisance, and be passive-aggressive if you have to.👍

I don't know...

I guess I just hit my breaking point today.😳

Hey everyone...
Just wanted to drop in and say hi.
My heart goes out to anyone who’s lost someone close lately. For the rest of you, hang in there—wishing you nothing but strength and wins as you keep grinding.
Let's hope the New Year brings some actual good news and a bit of joy for once.

Stay warm,
casualrider21

casualrider21,
thanks for the kind wishes and all the good vibes. honestly, we could all use a little more of that right now.🙂

Merry and blessed Christmas to all the fighters on this forum.

I wanted to reach out and wish everyone a very Merry Christmas as well; my hope is that Jesus stays close to you and your little ones through every single moment, allowing you to truly feel the depth of His love and constant support. 🙂