Support resources for families dealing with cancer and other serious illnesses

Grace Edwards50 said:Angela Wright, I couldn't shoot you a DM because your inbox is totally maxed out—you've gotta clear out some old messages first. Best, Grace Edwards50

Yeah, thanks.😬

Elizabeth Diaz60 said:This heartbreaking Thursday, my dear mother passed away. She was only 49. It’s been almost three years since her diagnosis (a glioma), and she spent this last year unable to move. She spent the final ten days in the hospital because things took a turn for the worse. Her condition during her stay was pretty up and down—we were really holding out hope that we could bring her back home.
She spent her whole life, including those incredibly tough final years, surrounded by the people who loved her most. Even in those very last moments, she wasn't alone. My sister, my wife, my sister's partner, and I were all right there by her side. Just like she did throughout her entire life, she fought until the very end.
She was truly an exceptional woman throughout her life. Everything she did was for her family—her kids, her husband, her parents. She always put us first and never once thought about herself.

Thank you, Mom, for everything!
You will live on through us and through our children forever!

My deepest condolences for such a massive, overwhelming loss....
Look, I'm not really the type to cry—honestly, I rarely do—but right now, I am.

My oncologist decided, based on the latest tests, that we should wait four weeks to redo the marker results before deciding on the next steps. I haven't lost my nerve or my will to keep fighting... I just want to start envisioning myself in a better future, without this constant, agonizing waiting between one test and the next... Keeping my fingers crossed for everyone else in the fight—let's stay brave, summer is right around the corner after all....
Dina

Elizabeth Diaz60, please accept my sincerest condolences 😢!

Grace Fowler said:I am truly heartbroken over your massive loss....
Look, I don't cry often—honestly, rarely—but right now, I am...

My oncologist looked at my results and decided we should wait four weeks to rerun the markers before figuring out our next move. I’m not losing my nerve or my will to fight, though—not by a long shot. Right now, I just want to picture myself in a better future, skipping all this agonizing waiting between tests... I'm sending good vibes to everyone else in the fight; let's stay brave, especially since summer is just around the corner...
Grace

Dear Grace, keep your head up. Reading through your posts, it's clear you're holding your own with serious courage👍!

I'm rooting for you—mostly wishing you nothing but health, above everything else...

I already know how terrible it feels dealing with my own mother's illness, so I can't even begin to imagine what you're going through. But believe me, seeing your posts here actually helps me feel a bit better—knowing you're still here, still fighting!

Wishing the best to you, and to everyone else in this group too!

Grace Fowler said:Based on my recent lab results, my oncologist has decided we should wait four weeks before re-testing my markers, at which point we will determine our next steps. I am certainly not losing heart, nor am I losing my resolve to keep fighting... At this moment, I simply wish to envision myself in a brighter future, rather than being caught in this endless cycle of waiting for one test result after another... My thoughts are with everyone else in the fight; let us press on bravely, especially with summer just around the corner...
Your Grace

Dear Grace,
what is four weeks to someone like you? It is nothing, because you are already looking toward a better future with such an optimistic spirit! As you so aptly put it—we simply push forward without giving up. Everything can still be turned around and made right.

About a year ago, none of us who have been through this could see a way out, least of all my mother. Today, she is like a completely different person, and in two days, my father is taking her to Tuscany. You remind me so much of her, Grace, and I truly hope she never stops fighting her own battles!

Try to look forward to the summer, as it will surely bring many beautiful things!
kisses,
Nancy Hernandez43

Elizabeth Diaz60, oh man... Angela Wright really hit the nail on the head and said everything that needs to be said.

Melissa Kim45 said:Right. So much fun. 😁 How’s your dad doing after his surgery? Keeping my fingers crossed for you... 🙂

Things here are basically just pure chaos. Mom can't seem to put an ounce on; she hasn't even hit 78 pounds yet (that's where she is today, but she took a diuretic so a lot of that was just water weight). She won't go above 82 lbs no matter what. She needs to go in for a checkup, but she refuses—she's terrified. Getting some good news, or even just nothing too bad, would be such a boost for her, but she just won't let a doctor near her. We don't want to force her into anything, but still... she's so incredibly weak, and it's not like she isn't eating.
She smokes, obviously, and begs people to come over and bring her unknown. Someone tells me they will, then they actually bring it to her. What kind of person looks at someone in my mom's state (both physically and mentally) and decides to bring her 3mg unknown? I found two pills shoved in the armchair, one empty wrapper in her pillowcase, and one half-used pill under the rug. Seriously.😲
I called that woman after, and I don't think she's coming back.😁
It was such a struggle to get the truth out of her; in situations like this, she gets incredibly sharp and cunning, very persuasive and stubborn.
I ask her if maybe what I'm giving her isn't enough. It is. In the morning, I ask how she slept. Fine. And then she acts too precious for other people to help her sleep. That just means she knows exactly what she's doing. And she clearly loves getting a little buzz...

She starts coughing, then grabs a glass of water and just keeps choking on the cough... I'm watching water fly everywhere, her face turning bright red, drooling, with a cigarette in her other hand, and I can't believe it. I can't say a word to her. "You're always just picking on me." Then I grab my phone to call someone, and she yells, "You're going to take everything from me!" She paces around the apartment, stumbling. If I were to say I wanted to watch CSI right now, she'd snap, "Oh, so now I'm the Pyramid!" 🙂 I don't watch anything, it doesn't matter, I just leave her alone, but she isn't looking at the Pyramid, she's just dragging herself around the house. It's a miracle she hasn't completely broken down. Are you kidding me? Where's my toothbrush? What are you doing? Is it fun for you on the internet? When are you going to cut my nails? When someone calls, I always hear: "Do you want some, Melissa?" 😠
It happens every ten minutes.

Yesterday she worked me up so much that I gave her Haldol in the evening, even though she isn't supposed to be taking it anymore. The doctor said I could if she got really restless.

I'm just completely drained. Everything is getting on my nerves and I can't stand anyone.🙄 My brother is the same way; he even said he has no idea how much longer he can hold it together. We have nobody to lean on, no one is helping us at all, we just have each other and this awful situation. On top of that, she's constantly badgering him to bring the grandson over, but as soon as the little guy touches something: don't touch this, don't touch that, he'll ruin the fish, he'll wet the table, he'll mess up the couch, it's a memory, he'll tear it, he'll wrinkle it...
If she's going to act like that, THEN WHAT'S THE POINT?! He's a two-and-a-half-year-old kid, not the Terminator, SO WHAT?! Good grief...😍😁

I’m thinking about scrolling back to the very beginning of this thread to see if I missed any good ideas. I'm honestly at a loss for what else we can try to give her... It feels like the doctors have done everything possible, and I doubt there are any other treatments left in the toolkit.

Melissa Kim45, I know how incredibly hard it is to live like this, but please hang in there. You know better than anyone that this won't last forever. That weight loss your mom is experiencing is seriously concerning—I'm going through something similar, but I manage to get some Ensure down every now and then. Maybe try encouraging her to try that or a similar nutritional supplement? It really helps keep me upright, even though I'm constantly reaching for a cigarette just like your mom...🤷I'm not doing much better myself, except for that one week when I'm getting chemo. Stay strong!

rustyscout31 said:Sadly, my mom almost literally starved to death. In the 21st century! She was constantly vomiting, and they had her on IV drips in the ER. Nobody even suspected the small intestine; they just assumed it was her stomach or something else. Finally, after a massive struggle searching for doctors who actually knew what they were doing, it turned out she had thickening in her small intestine, so food couldn't pass through at all.
If my doctor—who is also a friend—hadn't insisted on immediate surgery, my poor mom would have died from hunger...
She’s down to 49 kg now, following the surgery and an adenocarcinoma of the jejunum. She’s drinking Ensure and some other supplements her oncologist prescribed to help boost her strength and immunity. Obviously, the weight isn't everything, but she needs to be strong enough to handle chemo... I'd personally be much happier if she could put on a few pounds... So anyway...

I am so sorry she's dealing with so many complications. It honestly makes me wonder how my doctor had the nerve to lecture me just two weeks ago about how the small intestine is a total mystery to them. I was at the hospital for a follow-up colonoscopy and everything supposedly looked fine, yet my markers are through the roof. I'm not naive enough to miss these things, and I am seriously fed up with all these different theories from one doctor or another. I swear, I'll push through this chemo to the end, get all my checkups done, and whatever happens, happens—but eventually, I'm going to tell them all where they can shove it. The digestive system is so incredibly complex, and they're just playing games with us!

Elizabeth Diaz60, I am so incredibly sorry for your loss. I know exactly what you're going through—it’s heavy, it’s exhausting, and honestly, there aren't even words for how much it sucks. You just have to take it one day at a time. Don't go looking for miracles or quick fixes while you're hurting; just try to keep moving forward, even if it feels impossible. I thought I was going to break, but here I am, still standing, even after a year since my mom passed and four months since my dad...
Hang in there.

Hey there, everyone!!
Well, I'm back—that little bout of bitterness finally passed... I guess that’s just how it goes sometimes. Those moments of weakness hit you out of nowhere, but thank God they pass, and I'm moving forward. I've realized lately that I've had way too much downtime, which just leads to me overthinking stupid things—so I've decided that's a total waste of energy. Instead, I'm going to use my time for something actually productive, like trying to get all my experiences down in one place. I want to offer some advice on how to fight through—or rather, how to survive—those crushing moments when you first get that news, you know, when they tell you, "you have cancer." Over the years, I've been jotting down little bits and pieces from my daily life, so I'm going to try to pull it all together. These little notes meant everything to me because whenever I looked back at them, they gave me the strength to keep pushing. Seriously, guys, if you ever feel like you can't find the words to say what you're feeling, just grab a pen and a notebook and write it down... it really helped me. I felt pretty defeated this time around... but I'm thinking of all of you, and I'm rooting for you so hard.
Yours, Grace Fowler

Grace Fowler said:Greetings to you all...
Well, here I am, having finally moved past that bout of bitterness... I suppose such things are inevitable... they arrive, and thank God they eventually pass, those fleeting moments of weakness, yet I am moving forward nonetheless. I have realized lately that I possess far too much idle time on my hands, which leads me to dwell on trivialities, and I have decided that such thoughts are quite pointless... so I shall attempt to utilize my time for something more productive, perhaps by compiling my experiences into one place to offer advice on how to navigate the crushing weight of a diagnosis like cancer... Over the years, I have kept little daily notes, and I intend to consolidate them. These snippets meant so much to me, as looking back upon them provided the strength necessary to persevere. My dear friends, if you ever find yourselves unable to express what you truly feel, simply take a pen and a notebook and write it down... it truly helped me... I was quite overwhelmed this time... I am thinking of all of you, and I am keeping you in my thoughts...
Yours, Grace

I am pleased to hear that you kept those notes and that you intend to compile them, as it might provide a helpful distraction from negative thoughts... We are all rooting for you, and sending our best regards from San Francisco!

Hey everyone...

I'm not even sure if this is the right spot to ask this, but honestly, it's probably my best shot.
Basically, does anyone know where I can actually get vitamin ampules—you know, for IV infusions? Like B1, B6, and C?
All I can find online is some vague nonsense saying they're "available by prescription at healthcare facilities." That doesn't help me much. If anyone's dealt with this before, please let me know ASAP.

Thanks...

Arthur Alvarez75 said:Hey everyone!

I'm not entirely sure if this is the right thread for this, but it feels like my best shot.
Basically, does anyone know where I can pick up vitamin ampoules for IV infusion—specifically B1, B6, and C?
The only thing I've found online is that they are "available via prescription at HEALTHCARE FACILITIES." So, if anyone has actually dealt with this, please let me know ASAP.

Thanks in advance!

Your best bet is checking with private pharmacies. For instance, dexamethasone ampoules are strictly for hospital use, meaning you won't find them even with a prescription at a local CVS or Walgreens, but we’ve been able to grab them from private clinics without any hassle or paperwork.

Grace Fowler said:Hello, my dear friends!!
I’m back—that bout of bitterness finally passed... I suppose these things are just part of the deal. They hit you, and thank God they eventually pass, even if they leave you feeling a bit weak for a moment. I’ve realized lately that I have far too much downtime on my hands, which leads me down those rabbit holes of useless overthinking. I've decided that's a waste of energy, so I'm going to pivot toward something more productive. Specifically, I want to try compiling everything I've learned into one place—offering some actual advice on how to navigate those crushing moments when you first get that diagnosis. Over the years, I've kept little daily notes and snippets of my life, and I'm planning to weave them all together. For me, those notes were a lifeline; looking back at them always gave me the strength to keep moving. To anyone out there who feels like they can't find the words to express what they're going through: grab a pen and a notebook and just write it down. It truly helped me. I felt completely drained this time around... I am thinking of all of you, sending my sympathies, and keeping you all in my thoughts.
Yours, Grace

Dear Grace, it might actually be a wonderful idea to feature your writings on our organization's official pages. We are actually about to launch a complete redesign of our website very soon, and it's going to be fantastic. We'll have a dedicated space specifically for sharing the stories of those currently fighting and those who have come out the other side. Please, give it some thought.

Best regards, 🙂

Hey everyone, does anyone here have actual experience using unknown for lung cancer? I’m looking to hear from real people who've been through it, not just reading medical literature. As usual, the books are nothing but empty promises and false hope... Thanks

Hey,

I could use a little help here.
My mom is going through chemo right now, and she's lost her hair. We picked up a wig for her, but honestly, she just feels more like herself when she's wearing scarves.
Does anyone know where I can find some decent 100% cotton scarves around Washington, D.C.?

Thanks in advance..

Amy Gray75 said:Hi there,

I could really use some advice.
My mom is going through chemo right now, and she's lost her hair. We bought her a wig, but honestly, she feels much more like herself when she wears scarves.
Does anyone know where I can pick up some 100% cotton scarves here in Washington, D.C.?

Thanks in advance..

I’ve always been a bit of a creative soul, so what I did was use a batik dyeing technique to make some triangular headscarves—basically a little first-aid kit for her confidence—that she wore throughout the process. In my experience, you'll get the best results if you just buy high-quality cotton fabric yourself, cut it to the specific dimensions you need, and hem the edges. You can also find turbans at most wig shops. My own mother actually preferred wearing those over a wig any day.

My grandmother was recently diagnosed with nasopharyngeal cancer that has spread to the lymph nodes in her neck.
I was wondering if anyone here might know a bit more about the treatment options for this or maybe some advice on nutrition during recovery.
thanks!

I just wanted to say a sincere thank you to everyone for the condolences and all the support you've sent our way during these incredibly difficult days for my family.
We’re sitting on about 8 Kytril tablets left over—the ones used to help manage nausea and vomiting during chemo. If anyone out there could really use them, please just shoot me a private message. I’d truly love to get them to someone they might actually be able to help.

I’ve been lurking on this forum for quite a while now, just watching and wondering if I should actually say anything. It’s a weird feeling seeing so many people here fighting the exact same battles I am. It doesn't exactly make the heavy stuff easier to deal with—knowing there's a whole crowd of us stuck dealing with absolute garbage—but honestly, reading about how everyone is still pushing through makes things feel a little less lonely. So, here goes nothing. This is my story.
Three years ago, my dad underwent surgery for a renal cell carcinoma that took out almost his entire left kidney. For three years straight, we played by the book—every six months, he’d go in for checkups with all his CT scans and bloodwork ready to go. Everything seemed fine until last year, around August, when he started getting this weird pain in his right leg. It wasn't even a sharp pain in one spot; it was just this dull, heavy ache high up near the glute. We spent four grueling months bouncing from specialist to specialist, trying to figure out what was wrong. Finally, an ultrasound caught it: a massive 12.5 x 8cm tumor on his sacrum. It was a recurrence of the renal cancer. And honestly? That wasn't even the worst part. They found metastases in his lungs, too. He’s hanging in there for now, currently on Sutent, but man, the costs are insane. Just one single dose pack of 30 tablets at 50mg runs him thousands. $0.00So, she’s starting her third round now. Honestly, I can't agree enough with what someone else already said—our healthcare system is completely screwed. My dad's medication is technically covered on the list, but nobody actually gets it because the price tag is just astronomical. Then people wonder why you spend your entire life grinding and setting aside money for medical emergencies. It feels like a scam. To make things even worse, my mom is sick too. Just a month or two after Dad, she was diagnosed with breast cancer. She went straight into surgery, and now she’s mid-chemo; she has her third session in a week. She’s actually handling it pretty well so far—no vomiting, just some headaches here and there, and she’s losing a bit of hair. On top of all that, my grandmother passed away two weeks ago. We were incredibly close, and she was really my rock through this whole nightmare. Basically, this is just the prelude to the chaos ahead.
Look, I didn't write all this just to whine or play the victim. I’m sharing my story because maybe, just maybe, someone out there needs to hear it. I'm not the type of person who rolls over and quits, and I sure as hell don't plan on giving up on the life I've built, no matter how messy things look right now. We all deal with our own brand of chaos in our own way, but you have to remember one thing: this too shall pass. That's my mantra through all this madness. 😉
Hang in there, everyone. We’ll get through this.