Support resources for families dealing with cancer and other serious illnesses

Susan Diaz91 said:When dealing with cancer, honey, every single day counts. Please, take this seriously..

I was honestly stunned and found myself asking if she could recommend someone in Washington, D.C.??.. A hospital.. where, who... where do I even go? Because I'm 6 and a half months pregnant and I am just completely lost..... She said she could help, but then again, walking into a standard hospital involves all this whole procedure—you check in, there's the networking, then more follow-up exams in oncology because hospitals always insist on using their own internal lab results, and then there are those infamous priorities (just know there will always be someone with better connections or a more advanced stage of illness who will jump ahead of your mother simply because she isn't dying yet... and there's still hope...... waiting lists, getting Medicare to approve a specific medication, etc., etc...

I am so incredibly sorry about your mother.
Unfortunately, I am feeling exactly what you’re describing right on my own skin.
Because of a suspicion regarding a recurrence, my neurosurgeon is sending me for an MRI with spectroscopy. I called a private clinic, and they told me that with a standard referral, the wait is 5 to 6 months. I told them quite plainly that I don't have that kind of time, because in six months, I could be six feet under. They told me that if I were hospitalized, I could come in sooner for an emergency. But they won't hospitalize me because I'm still in relatively good shape; it's just that I recently started experiencing the exact same symptoms I had when my brain tumor was first discovered.

So, I asked the woman when I would be seen if I paid out of pocket. And that's the reality of it: pay up or drop dead. She told me two or three days. So, I basically spat in her face $1100. The results showed that it is indeed a recurrence.
Now I'm just waiting for the neurosurgeon to get back from traveling abroad.
And my mom is already considering selling our only property just so she can afford to pay for my treatment somewhere overseas.

Laura Morris16 said:Once he’s recovered enough, Dad will need to go to a hospital in Washington, D.C. for radiation treatments, so I was wondering if patients in his situation are entitled to medical transport via ambulance, or if they're stuck driving themselves to Washington, D.C. from further away every single day?

I'm completely new to all of this, so I'm just trying to figure things out.

Thanks!
Best regards,

Of course he would be entitled to it.
The primary care physician issues the order for medical transport.
If someone gives him a ride a few times, they can provide you with a travel voucher for reimbursement. Just make sure they note "with an escort" on the paperwork, because then the reimbursement amount is doubled.

The only downside to using medical transport is that it can be inconvenient since they always pack multiple people into one vehicle, so there's often a wait while everyone gets gathered up.
On the flip side, I actually met quite a lot of interesting people that way.
Based on my own experience, what I’d suggest is that during that final week—depending on how he's feeling—you should probably drive him yourself.
I went through seven weeks of radiation. Those last six or seven sessions were incredibly difficult to handle, and I was beyond relieved whenever someone was able to drive me on those days.

Dear feralridge3, thanks so much for the well wishes. I wish the same for you. In my case, it’s a brain tumor. It was partially removed at a clinic abroad, but I need two more surgeries to get it all out. I’ve been stuck waiting for those procedures for over a year now, and my condition has taken a turn for the worse. Since day one, this road to recovery has been incredibly brutal. First, because getting the right treatment here in the States wasn't an option, and then because of everything I had to go through just to make that overseas trip happen. I'm currently on Medrol for 21 days just to reduce the swelling and keep the tumor stable until I can finally get to the clinic. I don't feel good. I feel weak and helpless. I try to force myself to eat, but between swallowing issues and tongue atrophy, I've lost all interest in food. Honestly, I could handle any of this if I hadn't faced the hardest disappointment of all: having someone to share your life with, yet feeling absolutely nothing from them. I am completely alone in all of this. I've decided to focus all my strength on getting that surgery done first. That’s the priority. Once that's settled, I'll deal with the other thing—and believe me, it hurts. Sending my best to everyone. Stay strong. Susan Diaz91, Maria Fox, Nancy Hernandez43, Lisa White54, and Linda Cox69—I truly admire how you all continue to show up for your loved ones. Sending positive thoughts to you all. I hope everyone recovers quickly.

Maria Lee54 said:Hey feralridge3, THANKS, seriously, for all the good vibes. I’m sending those healing thoughts right back at ya... so, here's the deal: I've got a brain tumor. It was partially removed at some clinic overseas, but I need two more surgeries to get the whole thing out. Now, I've been stuck in this waiting game for over a year, just waiting for the next procedure, and honestly? Things have taken a turn for the worse. Ever since this started, the road to getting better has been a total nightmare. Mostly because the healthcare system here in the States couldn't handle what I needed, and then there was all the crazy drama involved just trying to get medical help abroad. I’ve been on Medrol for 21 days now, just trying to keep the swelling down and settle the tumor until I can finally make that final trip to the clinic. I feel like garbage—totally helpless and weak. I try to force myself to eat, but between swallowing issues and my tongue atrophying, food just doesn't look appealing anymore. And man, I could deal with all this physical crap much easier if I hadn't hit that ultimate wall of disappointment... having the person you share your life with, but feeling absolutely nothing from them... I am completely alone in everything that's hitting me right now. I've decided I'm gonna fight hard to get that surgery first—that's the main goal—and then tackle this other stuff, which, believe me, hurts way more than the tumor. Sending love to all of you. Hang in there, Susan Diaz91, Maria Fox, Nancy Hernandez43, Lisa White54, Linda Cox69... I really admire you guys and how you keep showing up for your loved ones. Sending positive vibes to everyone, hope we all get better ASAP!

I wish I were closer to you so I could just grab your hand and give you a huge hug.
Don't you dare give up. Keep fighting, keep looking forward. You're tough, you can handle this.
Eat. Just eat. It's literally part of the recovery process. You'll get your strength back and start feeling human again. When you eat, don't even think about the food—just shove it in and distract yourself with a book or the TV... it makes it easier. You'll end up eating more that way.
I'm so sorry you're hurting, but it'll pass. It has to. Tomorrow's a new day and things will look better.
I really respect your grit. You're amazing.

Maria Lee54 - reading about what you're going through really hit home for me. It made me realize just how much truth there was in what my doctors told me—that I should feel lucky the tumor was in a spot where it could actually be reached and removed with a single surgery. Well, it hasn't even been a year, and unfortunately, we're dealing with a recurrence. 😢

I truly understand what it feels like to navigate all of this entirely on your own. Honestly, it's more than just being alone; I was left in a terrible way right when I needed support the most. 😠

And look, I’m not going to bore you with all those empty platitudes—you know, the "stay positive," "don't give up," or "everything happens for a reason" nonsense. That kind of talk absolutely gets under my skin.
I just hope we both can get through this with as little pain and suffering as possible and find our way back to health soon. 🙂

feralridge3 said:Maria Lee54 - reading about what you're going through made me realize why my doctors told me I was lucky the tumor was in a spot they could actually get to and just cut out in one go. Well, hasn't even been a year and it's already back. A recurrence. Just my luck. 😢

I totally get how much it sucks having to deal with all this solo. Honestly, it’s the worst feeling because I was basically left high and dry right when I needed support the most. 😠

And look, I'm not gonna hit you with those empty clichés—you know, the whole "stay positive," "don't give up," "it'll all work out" crap. That stuff drives me absolutely insane.
I just hope we both get through this with as little pain as possible and get healthy fast. 🙂

Seriously, I just want everyone to get better and stop hurting ASAP. And I'm done with the "clichés," even though they actually helped my husband and me when things were hitting the fan. Even today, waiting on his test results, I find myself leaning on that kind of talk just to cope. It only gets under my skin when people who have zero clue what this fight is actually like try to feed it to me.
Anyway, didn't mean to offend anyone. I was just speaking from the heart.

feralridge3 said:How could you not have that right?
Your primary care doctor issues the medical transport order.
If someone drives him a few times, they can give you a trip log to get those costs reimbursed. Just make sure they mark it as "with an escort," because then you get double coverage.

The only annoying thing about medical transport is that there are always extra people in the van, so you might end up waiting while everyone gets gathered up.
On the bright side, I actually met so many great people that way.
Based on my own experience, what I’d suggest is driving Dad yourself during that last week, depending on how he's feeling.
I had radiation for 7 weeks. Those last 6 or 7 sessions were brutal, and I was honestly so relieved whenever someone could just drive me those days.

Thanks so much for such a detailed reply.
Best,

Lisa White54 said:I truly want all of you to recover as quickly as possible and for the pain to subside soon. I won't use those "clichés" anymore, even though those very same "clichés" helped my husband and me during our lowest points. Even today, as I wait for his test results—which I honestly don't know what they will show—I find myself comforting myself with those exact "clichés." They only get on my nerves when they come from people who have absolutely no idea what it’s actually like to fight this disease.
Look, I wasn't trying to irritate anyone; I was just speaking from the heart.

Thank you for the kind wishes. 🙂
Just because those "clichés" bother me doesn't mean they bother everyone else. 😉
I've noticed that the people who have been with me since the beginning hardly ever use them, or if they do, they are incredibly careful about how they phrase things (for example, it really irritates me when someone tells me, "Oh, I just know everything is going to turn out fine" 😠). I mean, seriously, how could anyone possibly know that?

The few people who actually follow my journey provide genuine support, whereas with most others, I sense an awkwardness or discomfort whenever they encounter me, or they reach out merely "out of obligation." And those are the ones who usually rely on those "clichés" the most. 🙄

Laura Morris16 said:Thank you so much for such a detailed response.
Best regards,

No worries at all. 😉
If there is anything else on your mind, just ask.
I have been using Imunnomax for nine months now, and given how things are going, I'm sure we'll be seeing plenty more of each other here. 😁

feralridge3 said:If I understood correctly, we are talking about a brain tumor recurrence?
I take glucan to support my immune system.
Since the surgery, I’ve had zero appetite and don't even feel hungry, but I’ve forced myself into a routine of eating at specific times, four times a day. I often have to force food down, and sometimes the very thought of food makes me nauseous.😢
My oncologist prescribed Medrol. The side effects are similar to the dexamethasone I was on for three months. That was pretty brutal for me, so when my doctor said I could take the Medrol only as needed, I stuck to that because I haven't really needed it.
I truly hope you recover and that the surgery goes smoothly.

It is good that you are forcing yourself to eat—that is a massive factor in this entire fight. If the appetite isn't there, ask your doctor to prescribe Megostat syrup. My husband kept a bottle sitting in his drawer for about six months (he read somewhere that it can cause impotence😱 and he was so demoralized by that he wouldn't even look at the stuff—but the kids and I eventually talked him into it by suggesting Megostat + Sanval, and that solved everything😍). All jokes aside, about a month ago—right around the start of radiation—he began taking 10 ml a day, and I can tell you all that he eats perfectly fine now; no refusing food or nausea whatsoever (and no side effects either😂).
Regarding the glucan, we haven't been "scammed"—since the beginning of the illness, my husband has been taking two 500 mg doses daily, and we are satisfied. We wouldn't dare stop. You have to cling to something; God forbid we don't try anything at all. We'd just tear ourselves apart.

Lisa White54 said:I wish I were closer so I could give you a hug and shake your hand.
Don't give up. Keep being brave and stay positive. You're strong, and you can get through this.
Just eat. Seriously, just eat—it's part of getting better. You'll gain strength and feel better soon. When you eat, don't overthink what's on the plate. Just keep eating while you read a book or watch TV... it makes it easier. You'll end up eating more that way.
I'm so sorry you're in pain, but it will pass. It has to. Tomorrow is a new day, and things will improve.
I really admire your courage. You're wonderful.

Thank you so much for the support. I truly appreciate it from the bottom of my heart!

feralridge3 said:Maria Lee54 - when I read about what you're going through, I finally understood what my doctors meant when they said I was lucky the tumor was in an accessible spot that could be removed with one surgery. It hasn't even been a year, and unfortunately, it's already come back. 😢

I really feel for you having to face all of this alone. I know how much it sucks, because I was also left hanging right when I needed support the most. 😠

I won't bore you with all those empty clichés—you know, "stay positive," "hang in there," or "it'll all work out." They just get on my nerves.
I just hope we both get through this with as little pain as possible and recover quickly. 🙂

Yeah, that’s exactly my issue too. My tumor is tucked deep inside the pelvis in a terrible spot, it's quite extensive, and even the diagnosis itself is rare. That's probably why your doctor told you that you were lucky it was at least reachable. In my case, it’s just not that simple. Thank you, and I truly hope you heal as fast as possible...

Dear ladies, I want to wish you all an immense amount of patience, a heart full of hope, and a long life filled with the kind of love you are bound to find. I am keeping your health in my prayers.

Susan Ruiz76 said:It is essential to force yourself to eat—that is a massive factor in the overall battle. If you find yourself lacking an appetite, ask your doctor about getting a prescription for Metformin syrup.

Things aren't quite bad enough on my end to require anything to jumpstart my appetite. I've managed to establish a routine, and I try to stick to it. The only thing that really gets under my skin are those phases where I can only stomach one specific type of food because everything else tastes revolting. However, those cycles tend to shift, so eventually, my body gets what it needs.
I have been taking one capsule of Glucan daily for seven months now. Whether it’s actually doing anything, I can't say for sure. I will say this, though: I haven't had a single cold or even a sniffle all winter... so perhaps it is boosting my immune system. 🤷

Maria Lee54 said:Exactly. For me, the absolute nightmare isn't just the diagnosis—which is incredibly rare to begin with—but the fact that the tumor is lodged deep within my pelvic bone in such an inaccessible spot. It’s extensive, and its location makes everything so much more complicated. That’s likely why your doctor mentioned you were lucky that this specific treatment was even an option for you; if things were positioned like mine, we might be out of luck entirely. I truly appreciate your kind words, and I am praying that you find healing just as quickly as I hope to.

I have crossed paths with several people on this journey who are facing circumstances very similar to yours.
I have come to the somewhat grim realization that the location of a tumor is often far more critical than whether it is classified as malignant or benign. I mean, sure, it could be benign, but what good is that label if it's growing in a place where surgeons can't actually reach it to get it out? 😢
I just hope we both find the strength to make it through all of this. 🙂

Maria Lee54 said:Dear feralridge3, thank you so much for the kind wishes, and please know that I am wishing you a full recovery as well... in my case, we are dealing with a brain tumor that was only partially removed at a clinic abroad; two more surgeries are required for complete removal, but I have been stuck in this waiting phase for over a year now, and my condition has unfortunately deteriorated... from the very first day of this illness, the path toward healing has been incredibly arduous. Primarily because of the lack of specialized treatment options here in America, and then due to the series of complications I’ve faced while trying to coordinate everything overseas. I have been taking Methylprednisolone for twenty-one days just to manage the swelling and stabilize the tumor until I can finally make it to the clinic. I don't feel well; I feel helpless and weak, struggling to force myself to eat when swallowing and tongue atrophy make it such an ordeal, which ultimately makes food unappealing... and I would endure all of these physical struggles so much more easily if I hadn't also suffered the most crushing disappointment of all... having someone to share your life with, yet feeling absolutely nothing from them... I am entirely alone in everything that has happened to me. I have decided that I will fight bravely to get to that surgery first—that is the priority—and then I will deal with this other matter, which, believe me, hurts quite deeply... Sending my regards to you all, and I hope you stay strong; Larazg, Nivia179, Nancy Hernandez43, Lisa White54, Linda Cox69... I admire you all and how you continue to show up for your loved ones. Sending positive thoughts to everyone and wishing you all a swift recovery!

As Lisa White54 mentioned before me, the one who deserves admiration is you, for refusing to give up even though you lack someone to share this pain with, or even a warm embrace to help carry the load...

I am so sorry you have had to wait this long for another surgery, and sometimes I find myself wondering where such injustice comes from... However, since you were kind enough to send positive thoughts to all of us, the least I can do is return them and tell you that you must not give up; keep striving, think of all the things you still have left to accomplish and experience, and I truly hope you will be ready for surgery soon and that everything goes perfectly...

Unfortunately, I don't do much for my mother; my father has taken on that role, while I serve more as the voice she hears throughout the day...

We have actually entered a bit of a better phase recently. Mom's confusion, detachment, and general fatigue have subsided slightly, and another piece of good news is that today's blood work showed her markers dropped to 19!!! In all the positivity, I completely forgot to ask about the other values, like the neutrophils which are our biggest headache, but... we move forward! We keep fighting!

And to everyone reading this, STAY STRONG! Kisses

feralridge3 said:Things haven't reached that level of misery quite yet where I'd consider using an appetite stimulant... I’ve actually managed to establish a bit of a nutritional rhythm, and I intend to stick to it. The only thing that truly gets under my skin are those specific windows where I can only stomach one particular type of food, mostly because everything else becomes utterly revolting... but since those phases tend to cycle through fairly quickly, I suppose my body eventually manages to get whatever it needs in the end...
I have been taking one capsule of Beta-glucan daily for seven months now. Whether it has actually made a tangible difference is something I cannot say for certain... though I will note that I haven't suffered through a single cold or even a minor sniffle this entire winter season. Perhaps it really does bolster the immune system... 🤷

As long as you can maintain some semblance of a consistent eating schedule, that’s generally considered a positive sign, though I imagine it’s quite frustrating when you have a craving for something specific and find yourself unable to indulge...

My oncologist was quite adamant about incorporating Beta-glucan to bolster my immune system, and after spending some time digging through various online testimonials, I feel reasonably confident that it actually works... so please, do be certain to take it, even if it is just a single capsule a day. I am well aware of the price tag, as we ended up paying a similar amount ourselves... $233 I think I caught a glimpse of something while passing by a local pharmacy the other day... I believe there was some sort of medication being mentioned... $157No, I wouldn't exactly claim to be an expert on the matter beyond knowing that it actually works... I am certainly not suggesting that the dosage is identical when we are discussing two entirely different products, especially given the much lower price point...

No, regardless of how things unfold, I truly hope it never reaches the point where you find yourself writing that "things are looking grim on my end"... Believe me when I say everything will likely mirror this current situation or perhaps even turn out far better than what we are seeing now... Just hang in there...

Nancy Hernandez43 said:Like Lisa White54 mentioned before me—you’re the one who deserves admiration. You don't give up, even when you have no one there to share the pain with or offer a warm hug.

It sucks that you're waiting so long for this next surgery. Where does this kind of injustice even come from? Anyway, since you sent all of us such positive vibes, the least I can do is return them. Don't quit. Keep pushing. Think about everything you still want to do and see. I really hope you'll be ready for the procedure soon and that everything goes perfectly.

I can't do much for my mom physically. My dad has taken over that role; I'm mostly just the voice she hears throughout the day.

We've actually hit a good patch lately. Mom's confusion and constant fatigue have eased up a bit. Also, some good news: her bloodwork today showed her markers dropped down to 19!!! In all the excitement, I totally forgot to ask about the other values, like the neutrophils that have been giving us the most trouble, but... we move forward. We fight.

And to everyone reading: hang in there! Kisses.

I won't give up, and I won't surrender, no matter how hard it gets. "Hard" doesn't even begin to describe it... waiting for over a year is just brutal. Eventually, I'll share my story. It isn't pretty, especially given the injustice I've faced since treatment began. If nothing else, I know I'm a strong person with a lot of patience and tolerance. I really miss having support at home, but I have plans I'm determined to make happen. Those goals will keep me going. Thank you for the kind wishes; I wish the same for your healing journeys.

feralridge3 said:I’ve met a few people on this journey who are in the exact same boat as you.
I’ve come to realize that where the tumor is actually matters more than whether it’s malignant or benign. I mean, sure, it could be benign, but what does that even matter if it’s growing and they can't get it out? 😢
I really hope we all find the strength to get through this. 🙂

We will. We have the strength, and we'll keep giving each other that extra boost when things get heavy. That's why we're all here—to support one another and offer a kind word. Honestly, just knowing someone truly hears you and understands makes an endless difference. We’re going to make it through, fueled by a hope that never dies.

Maria Lee54 said:We absolutely can, because we have the strength within us, and we’ll just keep lending that extra bit of strength to one another whenever things get tough... that’s exactly why we’re all here, to offer each other support and a kind word, and honestly, just knowing that someone truly hears you and understands what you're going through makes an endless difference. We are going to make it through all of this, held up by a hope that simply refuses to fade away.

😘