Resources and support for families dealing with cancer and serious illness

electricgardener14 said:I’ve been sitting here reflecting on what you said, Angela Wright, rewinding the tape back four months to when my husband was first diagnosed. Suddenly, I was drowning in phone calls from everyone—people I knew and people I barely recognized—all just checking in on his health. Even on the street, neighbors I only nod to would corner me to dig for details about his illness, clearly just looking for fresh ammunition for their next gossip session. I was terrified by it all; I hadn't even processed what was happening or figured out my next move, yet everyone expected me to spend my entire day answering phones and providing status updates. So, I made a choice: I cut them off. I simply stopped picking up. I know I hurt some real friends in the process, but I felt this desperate, primal need to isolate myself and just be left alone. Now, I’m slowly emerging from that shell. The true friends have separated themselves from the noise; they understood what I was going through and what I'm still enduring. But the reality remains that, aside from popping onto this forum occasionally, I haven't opened up to anyone about his illness, how I’m holding up, my fears, or my nightmares. I just can't bring myself to be vulnerable with anyone. It all hurts too much, and inside, I feel like a ticking time bomb. Damn this disease... damn it all.
electricgardener14

Ah, the neighbors... of course, there are always those types who treat someone else's suffering and mental anguish like it's gourmet food. I honestly can't wrap my head around that mentality. My situation was almost identical; everyone was calling to get the latest scoop—friends, acquaintances, even close family and best friends. Then, once the whole thing became old news, they all vanished into thin air.
electricgardener14, as absurd as it might sound, I truly hope you find some sense of purpose within your pain and heartache, and through that, find some peace. It’s the only way to actually move forward without breaking.
What’s the current status? Is he in pain, or is the treatment he received enough to keep him stable for now? Is he in Washington, D.C. or San Diego?
Stay strong and keep that courage you've shown so far.😘

Angela Wright said:Ah, neighbors... naturally, there are always those who feed on the suffering and heartache of others—it’s a mindset I simply cannot wrap my head around. It was more or less the same situation for me; everyone was calling to get the latest updates, from acquaintances to close friends and even dear family, yet once the news became yesterday's headlines, they all vanished behind a sort of emotional filter phase.
Dajana, as absurd as it may sound, I truly hope you can find some semblance of meaning within your own pain and suffering—perhaps even a sense of peace—because that is the only way to move forward with any sanity left.
What is the current status? Is he still enduring the pain, or is what he received enough to keep him stable for now? Where is he—in Washington, D.C., or San Diego?
Stay strong and brave, just as you have been so far.😘

He’s in San Diego right now at the hospital, having just finished his third round of chemo. The pain hasn't let up; because of the bone metastases, he can't even sit up in bed, let alone walk. Everything is moving at such an exhausting, frantic pace. Just this past May, we were hiking up Marjan—well, climbing through the brush—and he was scaling those rocks without even breaking a sweat, while I was practically crawling to the summit. And now, look at him. Sometimes it feels like he's playing a joke on me—you know, like he's saying, "Stop acting, get out of that bed, and let's go grab a coffee."
They are trying to wean him off the Voltaren he takes alongside the Palladon, but do you happen to know why? Is Voltaren really that harmful? It seems to be the only thing that actually touches the pain; everything else just puts him to sleep while the agony persists. They are planning to do radiation on his spine next week—some people mentioned that radiation helped them get back on their feet, so we are clinging to that hope.
How is your mother doing?
Best,

electricgardener14 said:He’s in San Diego right now at the hospital, having just finished his third round of chemo. The pain hasn't let up; because of the bone metastases, he can't even sit up in bed, let alone walk. Everything is moving way too fast. Back on May 1st of this year, we were hiking up Marjan, and he was powering through those steep trails without even breaking a sweat while I was practically crawling to the summit—and now look at him. Sometimes it feels like he’s messing with me, you know? Like he's telling me, "Stop playing around, get out of that bed, and let's go grab coffee."
They are trying to wean him off the Voltaren, which he takes constantly alongside Palladon. Do you happen to know why? Is Voltaren really that dangerous? It’s the only thing that actually touches the pain; everything else just puts him to sleep while the agony continues. They’re planning radiation on his spine next week, and some people have told me that radiation actually got them back on their feet, so we're holding onto that hope.
How is your mom?
Best,

Honestly, forget all that talk about Voltaren. It seems completely pointless to obsess over that side of things when he's in this much pain and it's actually working. What's the worst that happens—he gets cancer? 🙄
I don't know about the radiation, but there's usually some truth to what people say about it helping.
My mom is doing terribly. Lately, I've been obsessed with this haunting thought that I'll wake up in the morning to find her dead in her bed. I just wish she would pass while we are actually by her side.

Angela Wright said:Oh, please—forget all that talk about Voltaren. Honestly, I think it’s completely pointless to obsess over those side effects when she’s in this much pain and the medication actually provides relief. What is she going to get, cancer?🙄
I don't know much about the radiation concerns, but I suppose there might be some truth to what people say.
Mom is doing terribly. Lately, I've been haunted by this constant, intrusive thought—this fear that I'll wake up in the morning to find her gone in her bed. I just wish... I wish she could pass while we're right there beside her.

I understand why you feel that way—truly, I do—and I wish it could be that simple, but even if it isn't, the bond between you two is something that lasts forever.
Take care of yourself,
electricgardener14

Listen, ladies, my dear friends—allow me to weigh in on this topic, as I unfortunately possess far too much experience navigating the complexities of human relationships during such devastating illnesses. You know how it goes; when my mother passed, not a single soul reached out to ask how I was holding up or if I could keep going, save for my two cousins, with whom I share an incredibly deep bond. Thank God there are medications available these days, otherwise, I’d be wandering the streets in a state of total mental collapse. Initially, people approach this out of pure curiosity, treating it like some scandalous social gathering, but eventually, it shifts into this heavy, awkward tension—fear, perhaps, or some other inexplicable human instinct. It’s as if we were living through a plague. I visit the cemetery regularly, only to find my own candles burning there. And my brothers and their wives seemed to take the blow even harder than I did... as if they were the ones by her side, providing the care and attending to her every need. The one thing that TRULY sustains me is the quiet certainty held within my soul and heart; I know exactly what I did and the depth of the support I provided. I pushed myself far beyond my limits—mentally, physically, and financially. And then, of course, there are those beautiful memories (the ones you wrote about the other day, Angela Wright). In truth, I feel profoundly lucky to have had such a mother and such a magnificent, intimate connection; a being like that comes along only once in a lifetime. I take pride in that, and it is something no one can ever strip away from me. It will be nearly a month since she left us, and the "what now" of it all feels hollow. My friends seem to think they don't need to check in because I am "strong enough" to handle it alone. Please, give me a break. It is incredibly difficult. But that's the reality. One shouldn't exhaust themselves worrying over these superficial social dynamics. It costs too much in terms of your sanity. You simply have to LEARN to surrender everything to God; God will handle the rest.

Let me jump in here; whenever I try to open up about what we’re going through, I get this look from people—like they’re judging me or looking at me with this pitying, stupid expression. It honestly feels like THEY are the ones who need comforting, which is just wild. But whatever, let's move on to something else because I really don't want to kill the vibe here... and hey, I guess you can't blame them for reacting that way.

Anyway, we actually had about ten days of feeling good where my mom was doing great. On the phone, she sounded like her old self again, totally healthy. Then, out of nowhere yesterday, she just spiraled back into being completely lost. 😢

crimsonmason44 said:Hey there, my dear friends... I'm finally jumping in and posting here for the very first time, even though I've actually been lurking and reading everything you all share for about three months now. You guys are truly wonderful, and honestly, seeing your posts gives me the strength to keep pushing forward... My dad was recently diagnosed with lung adenocarcinoma. It all started about six months ago when they discovered some metastases in his brain; he had surgery to remove them, and thank God, the procedure went really well! He finished ten rounds of radiation on his head, and right now, he’s working through his second cycle of chemotherapy. He handled the first round pretty well, but this second one... well, it's been tough. He's actually in the hospital at the moment getting IV infusions because he became incredibly weak. Once this second cycle is wrapped up, we'll be heading back for more scans and tests to see where things stand. Our family's whole world changed overnight (you know how it is...) and sometimes I feel so incredibly small and alone in all of this, but this community really gives me the courage to keep going. As for "friends," let's just say I've realized how few people actually show up when things get real, which is pretty heartbreaking... but it doesn't matter, none of that matters as long as my dad starts feeling better.🙂 Hang in there, everyone! Sending a huge hug to all of you!

This forum has been such a massive help to me too, and it continues to be a lifeline... you all truly give me strength...
Anyway, I'm feeling so happy today because I'm headed into town to meet up with my mom—she isn't doing well—so we're going to take a little stroll and sit down for coffee together. I am just so grateful for that simple moment...
He's handling the treatments okay, so we're just taking it one step at a time and moving forward... We're holding onto hope that the final results will be good... Kisses to everyone! 😘

brightgardener8 said:We actually had about ten days of stability where Mom was doing great. On the phone, she sounded like she was back to her old self, totally healthy, but then yesterday, everything just fell apart again. She’s lost all that ground. 😢

Time😳... when Mom is struggling and things start looking up, I find it easier to cope knowing it’s just part of the cycle.

Hey
Honestly, guys, what can I even say... I just finished my fifth round of chemo in this cycle... and man, I am absolutely wiped out. I’m feeling it in my soul. But I don't know—maybe it's just pure stubbornness—but something keeps pushing me to just keep grinding through it. Every single bone in my body aches—just one of those lovely side effects from the drugs—so typing this is actually a massive struggle... but I need this little window to the world. I'm sending you all so much strength. Please, don't you ever give up. Keep fighting until you win—until you're healed...
Dina from the outskirts ....

Grace Fowler said:Hi
My dear friends, I honestly don't know what to tell you... I just finished my fifth round of chemo in this cycle. To be blunt, I am absolutely exhausted, worn down to the very marrow. Yet, there is this stubborn, inexplicable spite within me that forces me to keep pushing forward. Every single bone in my body aches—it's the inevitable fallout from the treatment—and even typing feels like a monumental task. But this forum? This is my window to the outside world. I want to wish you all immense strength. May no one ever falter in their fight until they reach victory—until they reach healing...
Dina from the edge....

You aren't "Dina from the edge"... you are Dina from the summit. I wish you nothing but the best in this grueling battle. Hang in there, and please... check in more often. We don't hear from you nearly enough.

Thanks again, everyone—wishing you all nothing but the best!

Angela Wright said:I have essentially navigated the same waters as you, arriving at those very same conclusions... I find myself currently navigating this realization that not everyone possesses the fundamental capacity to offer support during such times. Cancer remains a profound taboo; it is viewed as something inherently grotesque, often conflated with darkness, suffering, and pure agony. Some individuals simply cannot stomach the reality of it—unless, of course, it strikes their own immediate family, and in all fairness, they have every right to feel that way😳. Such circumstances tend to completely unbalance them—most of those who stop reaching out—stripping them of their rationality, and perhaps it is actually for the best that they distance themselves when they lack the ability to provide what is most vital in these moments: a word of wisdom or genuine presence. Truly, such people are rare, and one is fortunate to have even a single soul like that nearby.
For me, this entire ordeal has functioned as a sort of filter for "friends," and I can tell you that while I don't miss any of these supposed companions, it doesn't mean I won't invite them for coffee or call to see how they are doing. In truth, this process is allowing me to discover my own strength; I am realizing just how much more resilient I am than they are, given that I can rise above the fact that this is happening to my mother—and thus, to me—as well as the fact that they behaved so pathetically by failing to offer even the basic courtesy of a phone call to say they are thinking of me, let alone asking how I am faring. Life moves forward, and I finally possess a clear understanding of what I can actually expect from whom.
On the other hand, I have encountered the massive paradox of people stepping up to help when I wouldn't have even expected a glass of water from them previously. People respond to different triggers and sensitivities in vastly different ways.
There is really no need to dwell on it too much.

Of course, there is no need to overthink it. Different strokes for different folks, as they say. I am fully aware of that. We find the most solace in those who have walked through similar fires themselves, whether personally or through their loved ones...

Grace Fowler said:Hello
My dear friends, I honestly don't know what to tell you... I just finished my fifth round of chemo in this cycle... and I am absolutely exhausted, truly bone-tired, yet some stubborn part of me keeps forcing me to push forward... Every single bone in my body aches—just one of those lovely side effects from the treatment—and even typing feels like a monumental task... but this forum remains my small window to the outside world. I wish you all immense strength, and I hope that no one ever wavers in their fight until they reach victory—until healing arrives...
Dina from the outskirts....

I truly commend you for checking in, and I sincerely hope you are feeling a bit better today. Just hang in there, stay brave, and keep the faith through the struggle!

Grace Fowler said:Hey
Hi everyone, I just don't know what to say.... I just finished my fifth round of chemo in this cycle... and honestly, I am absolutely wiped out, just completely drained, but there's this stubborn streak in me that keeps pushing me to keep moving forward and forward... Every single little bone in my body aches (just one of those chemo side effects) and it’s actually really hard for me to even type right now.. but this forum is my little window to the outside world. I want to wish you all so much strength, and I truly hope that no one ever gives up in their fight until they reach victory—until they are healed....
Dina from the outskirts....

You are doing amazing! Hang in there and just keep pushing forward! Please check in whenever you can, we love hearing from you! 😉

Angela Wright said:Weather😳 ...when Mom is doing poorly, I try to tell myself it’s just the weather shifting, and honestly, that makes it a little easier to stomach.

I mean, I really want to believe that, right? I'm basically lying to myself at this point. But the weather hasn't changed in days, and she's still just as lost as ever... 😕

brightgardener8 said:I’m trying to believe it, honestly—I'm just lying to myself at this point—but the weather hasn't shifted in days, and she’s still just as lost... 😕

And who's to say how atmospheric pressure actually affects things? For all we know, high pressure might be just as bad.
We spoke with my mom's oncologist today. It looks like her liver is starting to fail.😢 Her liver enzymes are through the roof—absolutely astronomical—and everything points to that. Between the brain tumor and this, it looks like liver failure will be what ultimately takes her out.

Angela Wright said:Who can actually say how air pressure affects things? For all we know, even high pressure might be an issue.
We spoke with my mother's oncologist today. It looks like her liver is failing.😢 Her liver enzymes are off the charts—absolutely criminal levels—and everything points to that. Between this and the brain tumor, it seems like liver failure will ultimately be what takes her.

Regarding the liver, she should try Vitamin C paired with Reishi mushrooms.
And if she's taking noni, she might want to scale that back...
I've heard those are great for liver support. As for the corticosteroids? If I were in her shoes, I’d phase them out in favor of standard anti-inflammatories. You have to taper off the dexamethasone gradually, obviously. Makes sense, doesn't it?

Christian Wood63 said:Look, if you're worried about the liver, just take some Vitamin C along with Reishi mushrooms.
And maybe chill out on the Tahitian Noni if they're already taking that...
People say it's great for liver health, but honestly, regarding corticosteroids? I’d ditch them entirely and just stick to your standard, everyday anti-inflammatories. You obviously have to taper off the dexamethasone gradually, though... right?

What exactly are these "standard anti-inflammatories" you're talking about? And why wouldn't an oncologist just prescribe those instead of dexamethasone—which, let's be real, is effective at fighting edema but absolutely wrecks your liver and everything else in the process? 🤷
Our situation here in the States was a total nightmare when we tried dropping my mom down to 2 mg of dexamethasone; she's back up to 8 mg now, so we're basically just riding the wave...

brightgardener8 said:What exactly are these "standard anti-inflammatory drugs"? And why doesn't an oncologist just prescribe them immediately instead of dexamethasone? On one hand, dexamethasone works against edema, but on the other, it's incredibly hard on the liver and everything else. 🤷
In our house, things went south fast when we tried tapering Mom down to 2 mg; she's at 8 mg now, so we're just taking it day by day...

Care to elaborate on what you mean by "went south fast"? How bad was it actually?

Both Diclofenac and Ibuprofen work fine as anti-inflammatories. Of course, mannitol is also an option.
There is also Boswellia extract, which can be administered in doses of at least 1-2 grams to rapidly reduce brain edema.
As for dexamethasone... well, when you lower the dose, you often trigger a rebound effect where symptoms flare back up. Unfortunately, that's a common, expected reaction during a taper.
If you decide to go with one of these options, the method of administration can help minimize side effects.
..
There are definitely others, I just can't recall every single one right this second.

@Christian Wood63/">@@Christian Wood63

I've tried tapering my mom off the Dexedrine several times now, and every single time it ends in disaster. Her neurological outbursts just skyrocket, getting so bad that one day we practically couldn't wake her up—though that wasn't from the withdrawal itself, just the swelling getting worse. Right now, the only thing that seems to keep her somewhat alert is the boost she gets when we feed her. It feels like she’s on a direct flight toward a coma, and I’m terrified that pulling back on the Dexedrine will just fast-track that process.

Regarding the mannitol, I know it works, but my neurologist mentioned it carries a massive "yo-yo effect" when dealing with brain edema caused by a tumor. Usually, they use the mannitol to aggressively bring the swelling down quickly before stabilizing with Dexedrine. My issue is, who on earth would actually give it to her? I could probably pull strings to get my hands on the drug, but I have no clue what the dosage should be, how often to administer it, or when to stop. Besides, what home health nurse is actually going to take the illegal risk of hooking her up to an IV for this?🤷
Personally, if I were that nurse, I highly doubt I’d touch it.

And I don't quite follow this part about Ibuprofen. Are you saying it has the same effect as Dexedrine?😕 If that were true, it would be a game-changer, but I have no idea what dose would even help, considering she’s currently on 16 mg of Dexedrine a day.

We just picked up some Silmarin capsules, which are a natural supplement for liver support. We also cut her Phemiton dose in half.

Honestly, I’m at a total loss. We’re just stumbling around in the dark, trying to navigate this based on nothing but gut instinct and guesswork.
I’ve started having serious doubts about the Tahitian Noni, too. We’re going to pause it for a while and then redo her liver function tests to see if there’s actually any real improvement.
Where can you even find that Boswellia extract? Is this the stuff:http://www.super-smart.eu/article.pl...n&fromid=GG132