Resources and support for families dealing with cancer and serious illness

Hey everyone!
So, I'm back in this depressing little corner of the internet after taking a quick vacation.
I’ve got a question for you all. Does anyone know a nurse in Washington, D.C. who’s looking for some side work or maybe a retired one? Here’s the deal: my mom stopped taking her Dexamethasone about ten days ago because she was on a break before starting Temodal monotherapy. Well, the headaches came crawling right back, so obviously, she’s back on the Dex—4 mg. She needs an injection every single day, which is a total nightmare since we’re all working full-time. When I asked her doctor about getting a home health nurse, he just told me she wasn't eligible. That's why I was thinking it would be a massive help if a nurse could just swing by every morning to handle the injection. Even that idea Angela Wright mentioned—learning how to do the injections myself—is totally out of the question. We live on the complete opposite side of town, so by the time I drove over to her and back, I would've spent just as much time as if I had simply driven her to the clinic.

brightgardener8 said:Hey everyone!
Back in this depressing little corner of the internet after a quick vacation.
I have a question for you all. Does anyone know a nurse in Washington, D.C. who would be interested in some side work, or maybe a retired one? Here’s the deal: my mom stopped taking her Dexamethasone about ten days ago because she was on a break before starting Temodal monotherapy. Now, the headaches are back, so naturally, they put her right back on the Dex—4 mg. She has to get injections every single day, which is a nightmare since we all work full-time. When I asked her oncologist about a home health nurse, he told me she wasn't eligible. So, I was thinking it would be a huge help if a nurse could just swing by every morning to administer the injection. Even that idea Angela Wright mentioned about learning to do the injections ourselves isn't an option; we live on the complete opposite side of town, and by the time I drive there and back, I might as well have just driven her to the clinic.

Go to the hospital and have her oncologist write a recommendation for the Dex injections. Basically, while she's on chemo, she's treated as an outpatient in the day ward, so she’s entitled to free ampules that a home health nurse can administer (hopefully you've managed to get one assigned to come daily). Besides, 4 mg isn't a massive dose, so she could actually take it orally. That would be eight 0.5 mg tablets a day. Just split them into two doses—one before breakfast and one before dinner. The only real pain in the neck is having to constantly run back to the primary care doctor for new refills, since they can only write up three prescriptions for three boxes at a time.
Also, this whole thing about dropping the Dex while on Temodal is nonsense; my old lady was actually taking as much as 24 mg a day alongside the Temodal for a while. It honestly irritates me how these doctors don't even seem to know what they're doing themselves, and then they turn around and experiment on patients. The hospital doctor keeps trying to tell us that Dex isn't a big deal and can be adjusted as needed, but then her primary care doctor last night was totally skeptical (just like my cousin, who is also a GP), acting like a 16 mg dose could actually kill her. I mean, she might be right, but let's look at this from a palliative perspective... at least it'll stop the head pain and she won't die in agony. Her days are numbered regardless.🙂
We ended up buying those ampules at a private pharmacy because they aren't covered by insurance since they are strictly meant for hospital use. Honestly, I think my mom belongs in intensive care given her condition, but the fact that the hospital has no room for her is a whole other level of messed up. Her primary doctor was over last night and said she'd request a home health nurse to give these Dex injections we bought.
Lilac told me about a friend of hers—a doctor—who actually put a port in her own mother so she could give her meds intravenously when things were getting really bad. We just have to figure out a way to make it work, whatever it takes.
To be honest, it hurts me that this isn't exactly "by the book," but is it any more legal to leave these severe cases to fend for themselves and their families? Is it legal to lie about how Temodal isn't used for recurrences? I won't even start on the mountain of bullshit we've dealt with over the last two years...
Everything really just comes down to the goodwill of the home health nurses and the primary care doctors, who are, by the way, stuck in a terrible position and constantly being harassed by Medicare. Total bastards.😠

Hi everyone!
Could anyone share what happened after you stopped taking Temodal—how did the illness progress from there? I'm really interested in hearing about your experiences... thanks.

Nathan Bailey said:Hey everyone!
Can anyone tell me how the disease progressed after stopping Temodal? I’m really interested in hearing about your experiences. Thanks.

My mom took her last dose in September of last year, and by October, she was completely bedridden. For the most part, she just started declining rapidly, even though her MRIs were coming back clear. Apparently, it was due to the cell centers dying off from the radiation effects. They ended up diagnosing her recurrence around Easter this year.
Others have had much worse experiences, while some have had significantly better ones. My mom's oncologist actually told me about a patient whose tumor retreated after Temodal, and a year later, there was nothing left. It’s all incredibly individual, and statistics suggest a window of anywhere between 6 and 36 months. Don't dwell on it too much; just keep pushing forward and be grateful for every single day that feels high-quality and normal.
😘

Hello everyone, especially to our brave Ivanica !!! 🙂

My Grandpa and I are still in the thick of it. He finished his sixth cycle of chemo and is just about to wrap up his two-month treatment break, so we’ll be heading before the oncology board in a few days to figure out the next steps.
Over these last two months, he's had some pretty intense ups and downs. He has this tendency to overestimate how much energy he actually has left, and whenever he pushes himself too hard, he inevitably pays for it with high fevers and shortness of breath. We try to live by that mantra that Ivanica often mentions—just being grateful for every single good day we get. Because of that, I don't try to shield him from everything; I just hope he doesn't suddenly decide he wants to go bungee jumping, because I highly doubt his heart could handle the thrill.

Hey there, my favorites!!
Well, the third one is officially down. The reality is, I feel—actually, scratch that, I don't feel anything at all (these bone pains are just straight-up brutal)—but I'm not letting this crap take over my head or my life... I need you guys to stay brave for me, because I’m sure as hell going to keep fighting...
Sending a million hugs to everyone, from Grace Fowler

Hey everyone. I’ve been lurking on this forum for a while now, but I only just stumbled upon this specific thread. Honestly, seeing how much you all back each other up made me feel a little better. I totally get it—that kind of support is exactly what I needed, and still need, since I've been through the wringer myself dealing with the pain of losing someone I love to cancer. Sending big hugs, stay strong, and keep fighting. Love, rowdyraven6. 😘

Grace Fowler said:Hello, my dear friends!!
Well, here I am, posting for the third time. The truth is, I don't really feel like myself—honestly, I don't feel much of anything at all. These bone pains are just completely overwhelming. But I refuse to let this take over my mind or my life... I want you all to stay brave, because I’m certainly going to keep trying....
Sending a million hugs to everyone, from Grace

Big hello to you! Please stay strong and don't give up!!!😘

Hello everyone. I was hoping to ask for a small favor—we are currently brainstorming a slogan for the website I’ve mentioned here before. For those who might need a quick refresher on the project: we are collaborating with some dear friends to build a website dedicated to cancer. The vision is to create a comprehensive resource, a guide, and a support system for patients, their families, and their loved ones. We also plan to host a forum where people can share their lived experiences and navigate this together.

We want a slogan that feels powerful, impactful, recognizable, and above all, optimistic. I’ve posted three of our initial ideas on the blog, though we aren't entirely convinced they are the perfect fit just yet:

1. You are not alone
2. The fight for life
3. Toward a new day

So, I would truly appreciate it if you could offer your own suggestions or share your thoughts on these options. Please don't feel obligated to agree with ours; in fact, we are completely open to any direction you might suggest. 😁

We’re feeling a bit stuck and uninspired at the moment, so perhaps with your help, we can find some fresh momentum. Thanks in advance for sharing your perspectives and ideas. 😘

The Sword of Life

I’m really digging this "New Day" concept. It feels like it captures the actual grit and spirit needed to fight cancer.

Fighting this internal battle together 😁

I dig this:

For a new day.

Whether we’re feeling great or we’re totally wiped out, every single new day is worth celebrating.
When I was dealing with my illness, every morning—and honestly, every single rough patch—I kept telling myself, "Mickey, you've got this." It's easy to fall into that trap of thinking everyone else has it easier or that you're the only one struggling.
.

Angela Wright said:The Sword of Life

I really love this one regarding "A New Day." There’s something about it that captures the sheer grit required in the fight against cancer.

ruggednomad182 said:This resonates with me:

A New Day.

Whether we are thriving or struggling, we find reasons to welcome every sunrise.
During my own illness, every single morning—and honestly, during every dark moment in between—I used to tell myself, "Mickey, you can handle this." It's easy to fall into the trap of thinking everyone else has it easier, or that you're navigating this alone.
.

Thanks to you all...

Well... it’s over... it’s finally over!!! It’s just pure horror, sadness, and pain filling my entire life right now; Mom passed away on July 31st at 4:30 PM in her living room. Honestly, we owe everything to my sister—she’s an anesthesiologist, so she made sure we moved Mom there because three days ago she started struggling to breathe due to fluid in her lungs, and thanks to her expertise, we got her to a place where she could get the absolute best care possible. We were right there by her side the whole time, praying for her, but... maybe... I mean, I stayed an optimist until the very end even though you could see physically that there was no coming back, but her heart... man, her heart was such a fighter, beating so bravely until the last moment... I just sat there staring like a fool at that damn monitor showing the heart rate, praying every single second, and God knows I truly believed things would take a turn for the better, but the pulse was sitting at 40/20 and then it just vanished, and a pulse that had been at 70 just plummeted to 0 in five seconds and her heart just stopped. That heart, even if I sound annoying or foolish right now, it’s what kept both my sister and me going through all those terrible years when we didn't know where we'd be tomorrow or how we'd put food on the table after Dad died. This heart, it worked for us, especially for me after the war, it kept pushing right up until 18 months ago when we found out Mom had cancer. And in these last 18 months, Mom actually got one grandchild from my sister and one from me... little grandsons. They’re still here, looking toward her room, glancing in and then walking past, all confused, because in their tiny little heads, there's this one person who always entertained them, made them laugh, and loved them so much. They turn around when they walk past the room, kind of like how a person turns around when they think they dropped something, just checking to see if it really happened or not. To everyone here on this forum, I truly, deeply hope things get better for you, and I just want to offer one piece of advice—if nothing else, if only for my sake—as soon as you possibly can, go hug your loved ones, whether it's your father or your mother, it doesn't matter, just hug them tight, because this... this is so heavy that my hands are actually shaking, so please, everyone who ever listened to my heart at any point, just listen...

[QUOTE=Ryan Fisher64;9614183]It’s done... It's finally over. My life feels filled with nothing but horror, sadness, and pain right now. Mom passed away on July 31st at 4:30 PM in the living room. We only moved her there because my sister—who is an anesthesiologist—realized three days prior that she was struggling to breathe due to fluid in her lungs. Thanks to my sister's expertise, we could get her settled where she would receive the best possible care. We stayed by her side constantly, praying for her, but... maybe... I tried to stay optimistic until the very end, even though her body clearly showed there was no coming back. But her heart? Her heart was a fighter. It kept beating heroically until the last moment. I sat there staring like an idiot at that damn monitor showing her heart rate, praying every single second. I swear to God, I truly believed things would take a turn for the better, but her pulse dropped from 40/20 and then just vanished; a pulse that had been at 70 one second plummeted to zero in five seconds, and then... nothing. That heart, as much as I might sound tedious or foolish right now, was the thing that sustained both my sister and me through all those dark years—those times when we didn't know where we'd be tomorrow or how we'd put food on the table after our father passed. This heart kept us going, especially me, in the aftermath of the war. It worked for us until about 18 months ago when we found out Mom had cancer. And in these last 18 months, Mom was lucky enough to have one grandchild from my sister and one from me. They’re still here, wandering past her room, looking in, confused... little minds trying to make sense of someone who used to play with them, laugh with them, and love them. They turn away when they pass the door, almost like an adult double-checking if they actually dropped something. To everyone on this forum, I sincerely wish you better days. If nothing else, please, do this for me: as soon as you can, hug your loved ones. Your father, your mother—it doesn't matter. Just hold them tight. Because this... this is so heavy my hands are shaking as I write this. Please, everyone who has ever listened to me or felt a connection to my story, just listen. Hug them. I've talked about my mom more than I've talked about anyone else in my life. Dammit.[/QUOTE

I am so incredibly sorry... please accept my deepest condolences.[/QUOTE]

@Ryan Fisher64/">@@Ryan Fisher64

I am truly sorry😢. Take some comfort in knowing that God kept her here long enough for you all to weather the storm without regret. Let it comfort you that she closed a beautiful circle of life by getting to know her grandkids—that she was able to touch them with her vitality, her warmth, and her kindness. Take solace in the fact that she was exactly who she was meant to be: your mother.
She’s at peace now, resting easy because she saw that you guys are going to be alright. She lived her life to the absolute fullest. As much as this goodbye crushes you, try to find some happiness in those truths. Your mom will be right there beside you every single day of your life, and when your own time eventually comes, she’ll be waiting on the other side to take your hand and make that transition a little easier.

It’s brutal, I know, but don't lose heart; brighter days are coming as you fight the good fight for your kids. No matter how grueling that struggle feels, it's actually the most beautiful part of being alive.

This too shall pass, and you will find your footing again.😘

Angela Wright said:Go to the hospital and have her oncologist write a recommendation for Dexamethasone injections. Since she’s undergoing chemo, she’s registered as an outpatient at the day clinic, which means she’s entitled to free ampules that a home health nurse can administer (assuming you've managed to get one to come by every single day). Besides, 4 mg isn't exactly a massive dose; it can be taken orally. That would be eight 0.5 mg tablets daily. Just split them into two doses—one before breakfast and one before dinner. The only real headache is having to constantly run back to the primary care physician for new refills, since they can only write up three prescriptions for three boxes at a time.
Anyway, this whole business of stripping away the Dex while she's on Temodal is nonsense. My wife was taking as much as 24 mg a day at one point while she was on Temodal. Honestly, it’s infuriating that these doctors don't even know what they're doing themselves and then end up experimenting on patients. The hospital doctor keeps trying to tell us that Dex isn't a big deal and that the dosage can just be adjusted as needed, yet the primary care doctor last night was totally skeptical (just like my cousin, who is also a GP), claiming that a 16 mg dose could actually kill her. I mean, maybe she's right? But let's look at this through a palliative lens... at least her head won't ache, and she'll go out satisfied. Her days are already numbered anyway.🙂
We ended up buying those ampules at a private pharmacy because they aren't covered by insurance; they're strictly reserved for inpatient hospital treatment. Personally, I think my mother deserves intensive care given her condition, but the fact that there's no room for her in the hospital is a completely different issue. Her primary doctor was here last night and said she’d coordinate with the home health nurse to administer these Dex injections we purchased.
Lilac told me about a friend of hers—a doctor—who actually put a port in her own mother's arm just so she could administer it intravenously when things were getting really bad. We just have to figure out how to manage, whatever it takes.
To be honest, it hurts knowing this isn't exactly "legal," but is it any more legal to abandon these severe cases to fend for themselves and their families? Is it legal to lie and say Temodal shouldn't be used during a recurrence? And don't even get me started on the mountain of other lies we've encountered over the last two years...
Ultimately, everything depends on the goodwill of the home health nurses and the primary care doctors, who, by the way, are in a terrible position and subject to constant harassment from Medicare. Absolute savages.😠

As for me, following a brief vacation, I want to add that my father is also off the Dex injections and is currently taking it orally. As mentioned, 4 mg equals 8 tablets a day. It is simply not true that a primary care doctor cannot provide Dex ampules; they order them because they are on the hospital medication list, but either Medicare reimburses them, or you go to Medicare personally to get the money refunded—but the doctor's office gets denied by the higher-ups. You are entitled to a home health nurse, too; the problem is that most of these nurses just don't want to deal with giving injections. Speaking as a physician, I personally used to visit my patients every day to give them their injections, and for weekends, I'd leave them tablets. I had one patient who was taking as many as 32 tablets a day. These can be used long-term, though they spike blood sugar significantly, so you have to monitor that and sometimes introduce diabetes medication. There are plenty of side effects, but all of them are minor compared to the core issue we are treating. In short, the benefits far outweigh the harms.

Ryan Fisher64 said:Well... it’s over. Just... done. It feels like pure misery and heartache have just taken over everything. Mom passed away on July 31st at 4:30 in the living room. We actually moved her there because she started struggling with fluid in her lungs about three days ago, and thanks to my sister—who happens to be an anesthesiologist—we were able to get her settled where she could get the best possible care. We never left her side, just praying and hoping... though I suppose I was being an optimist right until the end, even when it was pretty obvious physically that she wasn't coming back. Her heart was such a fighter, though. I just sat there, staring at that damn monitor, watching the heart rate display and practically begging God to let things turn around, I swear. But her pulse was sitting at 40/20 and then it just vanished; it went from 70 to zero in five seconds, and then nothing. That heart... I know I’m probably being repetitive and annoying right now, but that heart is what kept both me and my sister going through all those terrible years when we didn't know where we'd be living or what we'd eat after Dad died. That heart worked overtime for us, especially for me, after the war ended, staying strong until about 18 months ago when we found out she had cancer. And in those last 18 months, she actually got a grandchild from both me and my sister. They’re still around, you know, looking toward her room, then walking past, looking all confused, because in their little heads, there’s this one person who always made them laugh and loved them so much. They turn back when they walk by the door, kind of like how a person turns around when they think they dropped something, just checking if they actually did. To everyone here on this forum, I truly, deeply hope things get better for you. If nothing else, just do one thing for me: as soon as you can, go hug your loved ones. Whether it’s your dad or your mom, it doesn't matter—just hold them tight. Because this... this hits so hard my hands are actually shaking. Please, for everyone who ever listened to me talk about my mom—and honestly, I've talked about her more than anyone else in my life—just take it to heart. Dammit.

My deepest condolences. 😘

[QUOTE=Ryan Fisher64;

I am so incredibly sorry, honey. I know how brutal it is just sitting there, watching someone you love go through that. I’ve been exactly where you are. There’s that tiny, desperate shred of hope you cling to—that little voice whispering maybe things will turn around, maybe they'll get better—but they don't. My brother passed away from leukemia two months ago, and those final days were just gut-wrenching, especially when nobody can give you any real answers, not even the doctors at Mount Sinai Hospital... But you still hold on and try. Unfortunately, life doesn't always end the way we want it to. Sending you so much love again. Hang in there.

Ryan Fisher64 said:That's it... it's over. Just pure misery, sadness, and pain filling up my life right now. Mom passed away on July 31st at 4:30 PM in her living room.

Ryan Fisher64, I am so sorry for your loss. I really hope things start looking up for you soon, even after a hit like this...