Support for families dealing with cancer and other serious illnesses (Part II)

quietpilot87 said:I’ll try to keep this brief.

Ten years ago, my mom passed away from lung adenocarcinoma at age 60.
Today, I found out my 68-year-old father has small cell lung cancer.
Both were heavy smokers for decades. Both quit before their diagnoses (Mom a few years prior, Dad nearly 20 years ago).

My dad and I haven't been close over the last few years; we struggled with emotional distance and communication issues. I kept him at arm's length, but secretly, I was just glad he was healthy—he's an incredibly high-energy, active guy. I honestly convinced myself he’d live to be a hundred, which gave me a sense of peace. Until now.

Right now, I can't tell if having gone through this once makes it easier or harder. On one hand, there's that "here we go again with this lung demon" feeling, but on the other, I'm in much deeper shock than I was when Mom got sick. Back then, I didn't even fully grasp what we were up against. Now? I've been crying for days and just can't pull myself together. The only silver lining is that I've seen my psychiatrist for seven years, and I have someone who can prescribe whatever calming meds I need to get by.

The worst part is that this overwhelming grief and hopelessness is the absolute worst thing I could do to myself, my dad, and the rest of the family. I know I should be staying strong and holding onto hope, but at the same time, I am absolutely terrified of everything repeating itself. Of course, I'm going to give it my all to be a rock for my father because I know how this plays out, but I'm scared for myself too. How am I supposed to function? How am I going to run my business? I was planning on having a child soon and maybe even moving abroad (my husband works overseas), and I have no idea how to balance any of that right now. I'm falling apart; I feel like I'm dying inside. No matter how prepared you think you are for life, you are never actually ready for things like this.

Anyway, thanks for listening.

Basically, don't let your mind spin out into a thousand different "what-if" scenarios. You have to take it one day at a time and tackle obstacles only as they actually show up. Most importantly, remind yourself that this is happening to your father, not to you. Everyone else is just caught in the wake.
That is the only healthy way to handle it. Life is unpredictable, and there are always a million different ways a situation can play out.

Hi there,
I have a few boxes of Nolvadex left over from treatment for metastatic breast cancer.
I wasn't sure if it was even worth posting here, but I wanted to ask if it makes any sense to donate these for someone else's treatment... Or should I just take them to the hospital? I'm really not sure...
Should I just toss them in the recycling or drop them off at a local pharmacy instead?

We went ahead and packed up every single one of those medications into a box and dropped them off at the local palliative care center. Honestly, I have no clue what they actually did with them once we left, but I’m holding onto the hope that they found a way to put them to good use for someone else.

Robin Diaz4 said:We packed all the meds into a box and dropped them off at the palliative care service. I'm not sure what they did with them, but I really hope they were able to help someone else...

Thanks, that sounds like a great idea!

Please help—my father is in the terminal stage of lung cancer. I’ve seen some of you mention the right to have home health services come to the house for IV infusions; could anyone point me toward the specific law or a link regarding that? Yesterday, we had to transport him via ambulance to the local clinic just to get an infusion because he isn't eating anything and is dealing with diarrhea. It was absolutely grueling for him—so painful and traumatic. His primary care doctor is insisting that home visits for infusions aren't possible and that he either has to come into the clinic whenever he needs it, or we just leave him there, which we are flatly refusing to do.

neoncyclist792 said:Please help, my father is in the terminal stage of lung cancer. I saw some posts about the right to have home health services come by to administer an IV infusion, so could someone point me toward the specific law or a link regarding that? We had to take Dad to the local clinic yesterday via ambulance just to get an infusion because he isn't eating anything and is dealing with diarrhea. It was such a grueling experience for him—so painful and traumatic. His primary doctor's office is claiming it's impossible to have an infusion administered at home and insists he has to come into the clinic if he needs it again, or we just leave him there, which we refuse to do.

You really need to reach out to a palliative care team. Standard home health nurses don't handle IV infusions...

Thanks for the reply. We don't have a palliative care team at our local clinic here, so I guess that’s where the trouble starts.

Which city are you in? The local health department needs to provide every bit of information and support available. There shouldn't be any "I don't know" excuses; they need to ease the suffering for both the patient and the family immediately. In our experience, we were able to get home nursing, visiting care, and palliative support all within 24 hours. We even got certain medical supplies, like a hospital bed... But you really have to stay persistent.

Grace Lewis6 said:Which city are you in? Honestly, the local health department needs to hand over every bit of info and support they have. There’s no room for "I don't know"—they need to ease the patient's suffering and help the family right now. In our case, we managed to get home nursing, visiting nurses, and palliative care all within 24 hours. We even got some equipment like a hospital bed. But you really have to stay on top of them.

Thanks, we actually managed to sort out the nursing visits and getting the hospital bed. And honestly, it wasn't thanks to the local health department. Now I'm wondering, who handles the vouchers for pressure ulcer mattresses? Apparently, you can't get the voucher until a pressure sore actually develops, but who is actually issuing them? Our local health officials are acting clueless again—they told us to see a physiatrist?! Is that actually how it works?

If you're looking to get anything for "free," you usually need a specialist's recommendation. It’s entirely possible they'll require a referral from a physiatrist.
We decided to just buy the mattress ourselves, because once pressure sores start developing, there's no going back. Caring for someone in end-of-life care is hard enough without having to deal with bedsores. It costs about $80.

Finally picked these up today..

I’ve been reading through these threads, and honestly, I can’t tell if we just got incredibly lucky or if our local healthcare system handles things better than other parts of the country. In our case, without even having to jump through hoops or beg for help, we were assigned a palliative care team. We had a doctor and a nurse who would drop by at least once a week—and even more often whenever we reached out. I actually ended up treating them to a little something special as a thank you; I kept all their numbers on speed dial, and they were always there for us, whether it was offering solid medical advice or physically showing up when things got tough.
When Dad finally reached the point where he needed a specialized medical mattress, the palliative doctor didn't even wait for me to ask; she suggested we take one of theirs. They actually had several available, and I just had to swing by and pick one up. They even offered to lend us a wheelchair. In the end, Dad passed away before we even had a chance to utilize any of that equipment. The doctor told me straight up: helping a patient in that condition is a necessity, and it is our right to receive that support. That’s really the whole point of my post: you have these rights, so please, don't be afraid to advocate for yourselves and ask for what's needed. We didn't even need to see a specialist; based on the palliative team's recommendation, the insurance company approved the claim.

All those teams sound great and offer everything you need, provided they actually have stock when you need it.
We got our princess right away; we just had to pick her up at the CIA. We waited a few days for a bed to become available, then rented a van and went to a warehouse to grab it. After that, we passed it directly on to another family.
We ended up buying a mattress.
What I really resent is that you get absolutely zero help on the weekends when things get intense; you're basically stuck with just the ER. They simply don't want to come out to the house because, well, a terminal patient is hurting or moaning, and they aren't able to take painkillers anymore. That last weekend is going to haunt me forever. It took five calls before we finally convinced them to come out and administer a pain injection.

Regarding IV drips and home health visits—the local health department is actually responsible for responding to patient calls, sourcing the fluids from the main headquarters, and ensuring they get administered. The visiting nurse acts as the middleman here. Her job is to call them first, who then coordinates with the health department to get everything organized. That’s how the system is supposed to work. On weekends, you’re looking at the on-call doctor or the ER.

neoncyclist792 said:Hi everyone, does anyone have the time or interest to walk me through how cancer treatment studies actually work? What are they exactly? How is the process structured? And when should someone start looking for one? Thanks a million!

There’s an actual registry for clinical trials.
https://clinicaltrials.gov/
You can search by specific diagnosis or drug name, and then narrow it down by location or current study status. Each trial recruits based on its own strict set of criteria—which are clearly posted once the trial opens in the registry—so it's tough to give a "best time" to start searching. Generally, people start looking once they've exhausted all standard lines of treatment protocols, though sometimes if your doctor is directly involved in a study, they'll suggest the optimal timing themselves. Some trials also include specific criteria regarding whether patients have already undergone certain treatments or not.
Once you're enrolled in a study, depending on which phase of testing it is, you'll receive either the actual medication or a placebo. All participants are blinded via coding; nobody, not even the doctors, knows who is getting the real drug and who is getting the placebo. Unfortunately, it’s a bit of a lottery, but it's absolutely necessary to ensure the drug is tested accurately. If the treatment proves effective for a patient, they often continue receiving it after the study concludes at the pharmaceutical company's expense, provided it remains effective for them. Participation in the studies is free since they are funded exclusively by big pharma, but the patient is responsible for their own lodging and travel.

Hey everyone, I could really use some advice here.
My mom is battling breast cancer that has already spread to her bones—she’s been practically bedridden since the diagnosis. We’ve reached that final stage now. She spends most of her time sleeping, talking to loved ones who have passed away, and she gets frustrated quite often. Honestly, even just trying to get her to take a single painkiller has become an uphill battle. Yesterday, while the palliative care team was visiting, my dad was there alone with her. They actually told him they could teach him how to administer her IV drip ourselves—as if it were no big deal! I was absolutely floored. My dad is 70 years old, and the stress of all this has actually made him sick. Is this even normal? To make matters worse, her doctor is the type who just shrugs and says "I don't know" to every question. We all feel so lost—we don't even know what our rights are at this point. Even the home health nurse who visits five times a week is terrified to touch the IV...

My dad passed away this past Monday. He was just waiting for the whole family to get there so we could all be together with him, and then he just stopped breathing. It’s been less than two months since his diagnosis. Honestly, I don't even have the strength to write about the healthcare system or all the bureaucracy right now...

copperbison822 said:Hey everyone, I could really use some advice...
My mom has breast cancer that has spread to her bones. She’s been practically bedridden since the diagnosis, and now we're facing this final stage. She spends most of her time sleeping, talking to loved ones who have passed away, and she gets angry quite often. Trying to get her to take even a single painkiller has become an almost impossible mission. Yesterday, the palliative care team was here while my dad was alone with her, and they told him they could teach him how to administer an IV drip himself, saying it wouldn't be a problem. I was honestly shocked. My dad is 70 years old, and he's becoming physically ill just from the stress of all this. Is that even normal? To make matters worse, her doctor is the type who just answers everything with "I don't know." We all feel so lost, and we have no idea what our rights are or what we can actually ask for. Even the home health nurse who visits five times a week is afraid to touch the IV...

No, it isn't right, but that's just how things are. You either deal with the system being this sluggish, or you fight it...

neoncyclist792 said:My dad passed away this Monday. He was waiting for all of us to get there so we could be by his side when he went... It hasn't even been two months since the diagnosis. I don't even have the strength to write about the hospital or the healthcare system right now...

My deepest condolences...

neoncyclist792 said:My dad passed away this Monday. He was just waiting for all of us to get there so we could be together one last time, and then he just stopped breathing—less than two months after his diagnosis. I don't even have the strength to talk about the healthcare system or how broken everything is right now..

I am so incredibly sorry for your loss.
Let him rest in peace.

Well, here I am, finally joining this thread. It’s 6:00 AM and I can’t sleep... again. I’m wide awake, just staring at the ceiling, playing the same depressing loop of memories over and over in my head...

I’ve been searching for support groups for cancer patients and their families, but I couldn't find much of anything useful until I stumbled upon this forum and this specific topic, which is why I decided to sign up. My mother was diagnosed with lung cancer seven months ago—Stage IV—and it has already metastasized to her brain. She has 14 metastases, though thankfully they’ve shrunk slightly due to radiation therapy.

No one in my family has ever dealt with cancer before; we only knew about it through movies or TV shows. My entire world just collapsed, and honestly, it hasn't stopped falling apart since. There are better days and worse days, but mostly it feels like everything has just ground to a halt... our whole little universe has completely revolved around this disease. Mom has already undergone cranial radiation, switching between different types of chemo, and the illness has changed everything.

Her life... I see it every single day. She is becoming the very thing she feared most in this life: helpless. Our relationship has shifted drastically, and not for the better. In the movies, you always see people drawing closer during times like this, but we’ve actually drifted apart.

She’s withdrawn into herself, becoming incredibly negative and listless. Meanwhile, I’m left fighting my own demons—the anxiety, the constant spiraling thoughts about the future—while she fights a cancer that is slowly consuming her. No matter how hard I try to be there for her in every way I know how, she isn't satisfied with me, and all our shared interests have just evaporated. I don't blame her, though... she’s suffering every single day. She can barely walk, and she’s lost so much weight in the last two months that her skin just hangs off her bones. She deals with agonizing pain and nausea. Some days are so brutal she does nothing but stay in bed.

This isn't living. This has nothing to do with actual life. For all of us, life has become nothing more than an endless wait for maybe a slightly better tomorrow. It’s so hard because even during the moments when she feels okay, she’s different. We don't laugh anymore, we don't enjoy things... she’s become so sharp with everyone, and I just miss her tenderness. Being her only child, I just miss my mom—the one I could laugh with, act silly with, talk about nonsense or philosophy... just anything...

It’s overwhelming to deal with all of this because she is suffering so much, and I have no idea how to handle these massive life shifts or where to look for hope. On top of everything else, I’ve isolated myself from people who are more curious than they are caring—those so-called "friends" and acquaintances. So, it's just me. Just me alone at 6:00 AM on sleepless nights, typing here in the hopes of finding good people who are going through something similar... because I feel like my head is going to explode if I stay alone with these thoughts any longer.

Not long before her diagnosis, I ended a serious relationship, and then a personal tragedy hit... and then the cancer followed. Everything just went downhill at once.

Her condition is terminal. All I want is for her to have quality of life for whatever time she has left, rather than just quantity.

My biggest fear is the end. I'm terrified of the moment it happens, but I'm also terrified by the fact that we aren't close anymore. This cancer changed her; she distanced herself, cooled off... even on the "good" days. I'm so scared, but it's so difficult to share this with anyone else who might actually understand, especially since I've been so deeply attached to my mother my entire life.

I'm also scared that I won't be able to endure this. I feel like the burden is getting heavier and heavier every day. It's hard to focus on anything when I'm occupied 24/7, and since I'm not working right now, I'm just left battling my own anxiety, which is a whole other story. I've pushed away people who tire me out with their shallow stories about themselves; it just drains my energy. I realize this first post is more about me than it is about my mom, and part of me feels selfish... but then I think, no, I'm not. I'm only human, and this is truly one of the hardest periods of my life. I am looking for support and understanding, and that's perfectly natural. I hope I'm right about that.

P.S. I could barely force myself to write this, but I finally did. I've been reading your posts, and I truly admire the courage and strength you all show. Sending strength, faith, and positivity to all of you and wishing your loved ones a recovery! ♥