Support resources for families dealing with cancer and other serious illnesses

So, I guess I’m joining this thread too.
I’m not really looking for any specific advice or anything...
My mom is dying and there’s just zero help available here 😢
We’re basically just sitting around waiting for the end to come.
Honestly, I don't even know why I'm posting this...
Maybe just looking for a few words of encouragement.
Wishing everyone else still out there fighting plenty of strength, patience, and a good outcome this Nov 🙂

Dana Miller2 said:I’m jumping in here too.
I'm not really looking for advice or anything specific.
My mom is dying and there's just nothing we can do to help her.😢
We're all just waiting for the end.
Honestly, I don't even know why I'm posting this.
Maybe I just need to hear some encouraging words.
I want to wish everyone else out there still fighting for their loved ones tons of strength, patience, and a peaceful outcome this 🙂

🙂...I am so sorry, but just like everything else in life, this will pass, and you will be okay again one day. You'll be a different person because of it, but you'll be okay.
Cherish every single second you have left with her and tell her how much you love her. I used to say it to my mom all the time, but now I feel like I didn't say it enough... it never feels like enough. 😢
Stay strong.

😢

After reading through some of these posts, I have to say... my heart goes out to all of you. I truly feel for everyone here. 🙂

Angela Wright said:🙂...honestly, I’m sorry, but just like everything else in this life, this too shall pass. You'll get through it and you'll be okay again. You won't be the same person, obviously, but you'll be fine.
Make sure you grab every single second you can with her to tell her how much she means to you. I used to say it to my mom all the time, but looking back now... it feels like it wasn't enough. It's never enough... 😢
Stay strong.

🙂Thanks 😢
She actually told me she loved me for the first time today. We aren't exactly the "I love you" type of family. But I always knew it was there...
And I told her back.
It's so hard... but it's such a beautiful thing when you actually have the time to say goodbye.

Angela Wright said:🙂...I’m so sorry, but just like everything else in this life, this too shall pass, and you’ll find your way back to yourself again. You might be a different person because of it, but you will be okay.
Make sure you cherish every single second you get with her and tell her how much she means to you. I used to tell my mom all the time, but looking back now, it feels like I didn't say it nearly enough... it honestly never feels like enough. 😢
Stay strong.

I couldn't agree more!

This is actually my first time posting on this forum, and wow, there are so many heavy stories and such intense battles being shared here. Honestly, this particular one hits closer to home than anything else I've read. This past spring, I lost my mother when she was 54... she had breast cancer.
I truly wish everyone here nothing but a much, much better New Year, and my heart goes out to all the members fighting illness and their loved ones, hoping for healing for everyone.
I really wish I could just vent and let it all out because I feel weighed down by a hundred different worries... we never asked for any of this.😢 But I guess we just have to find a way to carry it.
On another note, does anyone here happen to have experience dealing with inflammatory breast cancer? It’s relatively rare, so I was wondering if anyone knows anything about it.
And as for you, Dana Miller2, I really believe you’re going to pull through this in time. For me, those two months leading up to my mom passing were a complete nightmare... and then the grief just settled in... but things feel a tiny bit lighter now. Just hang in there as best as you can.🙂

Dana Miller2 said:🙂Thanks, 😢
For the first time ever, she actually told me she loved me. We aren't exactly the kind of American family that sits around exchanging those kinds of sentiments, you know? But then again, I always just felt it deep down.
And I told her too.
It’s hard, isn't it? But there is something so incredibly beautiful about having the actual time to say goodbye.

My dear 🙂Dana Miller2

Dana Miller2 said:Joining the thread...
Not really looking for advice.
My mom is fading away and there’s nothing left to do.😢
Just waiting for the end.
Not sure why I'm even here.
Maybe just some kind of encouragement...
Sending strength and patience to everyone else still fighting for a happy ending in New York.🙂

Death is inevitable.

Death is inevitable
at some point during the day
it's what people say all the time...
heard it from plenty of sources.

For heaven's sake, don't, darling,
pass away around five
in the morning, when you're angry
with me and the whole world.

Pass away around midnight
when an angel is descending.
Go peacefully, my little walkie-talkie,
while you're still being sweet.

I.S.

P.S. This poem is for your guy—hope you get that. 🙂
🙂

It’s just honestly, deeply tragic.
Our healthcare system should be absolutely ashamed of itself. 😢
I mean, what is the point of all these extra contributions, supplemental insurance plans, and co-pays if this is what we get?

Kimberly Wright said:Absolutely pathetic. Just plain tragic.
Our healthcare system should be deeply ashamed of itself.😢
What's the point of all these massive tax contributions, supplemental insurance plans, and out-of-pocket copays if this is the result??

Any diagnostic test labeled "urgent" (which clearly applies here) that gets delayed for more than three months (and honestly, if it’s actually urgent, waiting three months is already way too long)😳can be done through a private clinic, and then you can file for a reimbursement from Medicare.
I have no idea why nobody bothered to tell them that.🤷

Angela Wright said:Any tests labeled urgent—which, let’s face it, is clearly the case here—that end up on a waiting list longer than three months (though if it's truly urgent, isn't three months already an eternity? 😳) can actually be done through private providers, and Medicare will reimburse the cost.
I honestly don't understand how nobody has pointed this out to them.🤷

Most people just don't have access to this kind of information. I've seen firsthand that even some doctors aren't fully up to speed on the specific regulations or patient rights...
then again, there might be cases where people do know, but they simply don't bother sharing that knowledge.

Sure, you get the reimbursement, but what happens when people genuinely don't have the cash upfront to pay for a private scan or test in the first place? 😢

Back during Christmas, I witnessed a truly heartbreaking situation 🙂
it was a family with a young child... the father was the sole provider, but he hadn't been paid for months. By Christmas, they were left with $6.75 😢
the mother is ill, dealing with thyroid issues, but since they can no longer afford their supplemental insurance, she can't even go in for the checkups she needs, nor can they afford the copays required for those visits. So, she just stays home, suffering through it day after day. 😢

They live in a small town, they don't know how to navigate the system on their own, and so they just spend their days stuck in this cycle of sadness and struggle.

I fear there are far more people like them out there than we realize. 😢

Sorry to jump in here, but I really wanted to weigh in on this story coming out of San Diego.

The New York Times published an article featuring statements from several doctors (like Stern and Mrsić), and they pointed out that any physician has the authority to sign off on a patient being classified as an emergency, which effectively bypasses any waiting period for an examination.

I am absolutely certain that the doctor overseeing that young girl’s care is fully aware of how this works.
So, why go for such sensationalist, surface-level coverage? It feels like the goal is just to tear down the healthcare system, deciding arbitrarily when things should work and when they shouldn't, and frankly, that just isn't right.

It is crystal clear to me that we are looking at the actions of a single individual here, not a failure of the system itself.

Jesse Morgan3 said:It’s pretty obvious we’re looking at an individual failure here, not a systemic one.

Systems are built by individuals. Sometimes, all it takes is one person to drop the ball and everything goes sideways, simply because they failed to do their job properly. 😠

Jesse Morgan3 said:The New York Times just published an article featuring statements from several doctors—people like Stern and Mrsić—and they’re making the claim that... It’s funny how things work, isn't it? Any doctor has the authority to just sign off and declare that a patient is an urgent case, which essentially means they bypass the entire waiting room shuffle entirely.

I suppose this is the first bit of news I've come across on the matter.
That’s certainly worth keeping in mind, isn't it? It feels like one of those pieces of information that actually carries some weight when you stop to think about it.

I’m absolutely certain that the doctor overseeing that little girl's care knows exactly what they're doing.
So, looking at it that way, why does everything have to be so sensationalist and shallow? It feels like people just want to jump on the bandwagon and tear the whole system apart whenever it suits them, without really thinking about when that’s actually productive or when it’s just noise, which honestly doesn't seem right at all.

It seems pretty obvious to me that we’re looking at the actions of a single individual here, rather than some fundamental failure within the system itself. Is it really a systemic breakdown if one person just decides to go off the rails? It feels more like a case of personal accountability being the issue, doesn't it?

I wouldn't go betting my life on the idea that her doctor actually knows what's going on here.

It’s much like how I don't really see it as a matter of one specific person being at fault here.
Whenever you're setting up an appointment for those kinds of specialist consultations, they always require you to submit your entire medical history and all your documentation upfront, don't they?
So, a doctor makes a massive oversight, sure, but it really makes you wonder where everyone else was in that chain of command—all those staff members who are supposed to be listening to what patients actually need? How does a situation like this just sit there, gathering dust, while someone is left waiting for nearly a year without anyone stepping in to fix it? 👎

The recent case of a two-year-old girl from San Diego with a brain tumor—who’s looking at a 311-day wait just for an MRI—is just a drop in the bucket. It doesn't just expose the cracks in the American healthcare system; it exposes the cracks in our society and the bureaucracy that runs it. Humanity is slowly losing ground to the hollow platitudes fed to the masses (mostly by a population that's about 90% Catholic) or to people just feeding their own sense of nationalistic pride. Those of us with a bit more perspective saw this coming a long time ago—there’s no real help for those who actually need it. I’ll skip the deep dive on that and focus on my own situation. I already posted about how shady that health food store "Natura" was being with an alternative med delivery, but this is much worse. This involves an actual medical institution: "Mayo Clinic". I reached out to them regarding stem cell transplants, driven by my mother's illness. Here is the timeline of my correspondence:

September 27, 2009.

From: L.B.
To: Mayo Clinic

To whom it may concern,

My 78-year-old mother has small cell lung cancer, which was diagnosed 5-6 months ago. She completed her first round of chemo (four sessions, three weeks apart), and the cancer seemed to recede slightly. However, things took a turn for the worse two months later (weakness, shortness of breath, coughing up blood, dizziness, etc.). She is currently awaiting further hospital tests before likely starting a new cycle of chemotherapy. Given what I know about the success rates of stem cell transplants for various conditions, I am requesting a prompt response to the following questions:

1) Are stem cell transplants performed for small cell lung cancer?
2) Is this done here in the US, and if so, where?
3) What is the success rate of this method?
4) How risky is the procedure for someone of my mother's age?
5) Who should I contact to discuss this?
6) What is the typical waiting period for the procedure?
7) Is this procedure covered by Medicare?

Please note that my mother also deals with hypertension, heart disease, and osteoporosis. I would appreciate a quick and direct response, including addresses for the relevant institutions and specialists I should consult. Thank you in advance,

L.B.

October 2, 2009.

From: L.B.
To: Mayo Clinic

To whom it may concern,

A week ago, I sent an inquiry to your contact department regarding a matter that is critically important to me and requires a fast response. I am once again asking for an answer to my questions.

L.B.

October 5, 2009.

From: Mayo Clinic
To: L.B.

Your inquiry has been forwarded today to the Head of the Department of Internal Medicine and the Secretary of the Hematology Institute.

Epilogue:

My dear mother passed away on December 4, 2009, from complications of lung cancer, never having received an answer from the "humanists" at the Medical Center. As of today (January 16, 2010), the "Head of the Department of Internal Medicine and Secretary of the Hematology Institute" still hasn't replied to my urgent request.

The Head of the Department of Internal Medicine was appointed in 2003, Prof. Dr. Boris Vucelić. The Chief of the Hematology Institute, Prof. Dr. Sc. Boris Labar, surely knows the name of his secretary, who apparently "failed to deliver my questions," right? Just so you know the names of these highly educated "philanthropists."

Look, honey, this realization is absolutely gut-wrenching, but for doctors, people with microcellular cancer are often just "those who come and go quickly." That is a verbatim quote from a top-tier physician at a major organization that is actually supposed to be dedicated to cancer patients. It’s a hopeless diagnosis right out of the gate because they feel it isn't worth wasting precious resources on someone who—in their eyes—is "responsible for their own fate" due to smoking.
...I am just so incredibly sorry you had to endure this; honestly, it makes me sick to my stomach.😢

Please know that there are those of us who feel this deeply, and we aren't just sitting here feeling bad—we are actively working and fighting to shake things up. We want every single person facing cancer to receive equal treatment and have an equal shot at recovery, regardless of their specific diagnosis, the statistics, how they lived their lives, or where in the world they happen to be.
It breaks my heart that you weren't able to get in touch with the Jedro Association for lung cancer patients or our group, "For a New Day," which supports those battling malignancies. They haven't really been brave enough to reply to our inquiries lately. I also regret that you couldn't seek a second opinion or medical consultation abroad. No matter what the outcome ends up being, having an answer to that question would have made today so much easier for you.

My husband is battling small cell lung cancer, and honestly, it’s been incredibly tough lately...
He finished his first round of Taxol about ten days ago, after two unsuccessful rounds of Gemzar. We just endured four grueling days of intense muscle cramps and body aches, and he's started losing his hair... but what’s really weighing on us right now is some significant swelling in his right ankle (we've had to switch his medication from Lasix to Edemid, and we're trying dandelion tea too), those constant low-grade fevers every evening (around 99-100°F), and this sharp pain under his right heel.
In the three months since the diagnosis, we've been doing quite a lot—mostly sticking to natural remedies to support his immune system—and his blood work has stayed relatively stable so far. He does need supplemental oxygen for about 18 hours a day, though...
This swelling is really starting to worry us.
I would truly appreciate any advice you might have.
Does anyone have experience with Taxol therapy they could share?

Just needing a moment to catch my breath here: I just got off the phone with UnitedHealth Group, and they’ve pushed my PET CT appointment back to February 15th.
The reasoning they gave me was that things were too backed up in December and they basically need to clear out everyone who was originally scheduled for that month first. 😕
I honestly can’t even begin to describe how much this sinks my heart. 😢

Time is such a precious, finite thing when it comes to my mom... her ideal window to start chemotherapy was actually December 15th.
Now, she’s going to be two full months past that optimal timeframe! I’m just sitting here wondering, what on earth am I supposed to do about this?

Kimberly Wright said:Just need a second to collect myself: I just got off the phone with the Mayo Clinic, and they pushed my PET CT appointment back to February 15th.
Look, let’s be clear about what happened here: December was a complete wash. We basically sat on our hands all month, which means we now have a massive backlog of personnel we were supposed to have on the ground back then. We need to get those people scheduled and handled immediately to make up for the lost time. 😕
I’m beyond disappointed. Honestly, I don't even have the words for how much this sucks. 😢

Time is slipping away from my mom... the ideal window to start chemotherapy was back on December 15th.
She’s going to be two months past that ideal window! What am I supposed to do about this?

Try pushing them on the urgency factor and really lean on their clinical expertise. I’m not sure if it’ll actually move the needle, but give it a shot—ask them straight up how much sense it makes to delay a PET scan for an entire month when she's already dealing with a diagnosis like this.
Try to get an MRI scheduled. It’s not exactly the same thing as a PET-CT scan, but it’ll give you some solid boundaries and a better idea of what the next steps should look like.

Damn it all.😠

Back on December 17th, my oncologist ordered a PET CT scan because a previous CT had flagged some nodules, though they couldn't definitively pin down where they were coming from

I actually asked her right then—given how "efficiently" things move through our healthcare system here—what this delay meant for the body and if we could afford to wait on starting chemotherapy. She didn't give me a straight yes or no, just sort of offered one of those vague, dismissive reassurances that everything would be fine

I’m going to dig up her number and give her a call tomorrow

Honestly, I’m just so frustrated because we’ve been sitting around waiting for this January 27th appointment like it's some distant mirage. Mom already had her blood drawn, and I immediately went ahead and scheduled the follow-up with the oncologist for the 29th, even going so far as to clear those two days off with my boss so I wouldn't have to worry about work. And then, out of nowhere, someone informs us that the clinic basically shut down for the entire month of December and tells us we have to push everything back by a few weeks😠 Now I have to scramble to reorganize every single thing, and it's hard not to feel like we've lost so much precious time just because the medical staff decided to take an extended holiday break for Christmas and New Year's🙄

I’m just not sure...
Should I probably ask Mayo Clinic to send me some kind of formal, written notice regarding the rescheduling of my appointment? 🤷