Posts by silvercanyon7

Angela Wright and Gary Thomas13
Please accept my deepest condolences.

Gary Thomas13, I see so much of myself in everything you write about your father and how things have unfolded these last few days. It was exactly the same with my dad.
Grief is heavy. Show up for it. Give yourself permission to grieve as much as you need, whenever you need it. Do whatever brings peace to your soul.
My dad passed away last November, yet even now, the sadness hits me out of nowhere. The emptiness, that tightness in my chest... it hasn't left. Even today, if I hear music on the radio while I'm driving, I immediately switch to a talk station just to drown it out.
You just learn—or try to learn, anyway—how to live with it. You owe it to yourself, to your family, and to your father.
My dad used to say all the time: "Don't make a mountain out of a molehill."

For those who feel the need to vent here, please visit the Psychiatrist section. There is a thread titled "How to live without a loved one" or something similar. It truly helps to share your thoughts and emotions with others walking the same path. We are here to support one another.

Sending my best to you both. Stay strong.

restlessowl3 said:The Dexamethasone isn't working right. It’s supposed to be anti-inflammatory, but it’s doing nothing for her. When she was on the Medrol, her muscles didn't ache. Now, we try Ibuprofen or Tylenol, but once the pain starts, it just won't quit for hours. Plus, she's incredibly swollen—totally waterlogged. Is there any chance her primary care doctor could prescribe a morphine-based patch or maybe some diuretics to handle the swelling, given her diagnosis?

restlessowl3, my dad was on Medrol too. His face swelled up, then his neck. Angela Wright already mentioned "moon face." That's exactly what happened to my father. Eventually, he tapered off the Medrol slowly. You cannot stop cold turkey; please, be careful with that. Once he finished the taper, the "moon face" disappeared and his face returned to normal.

Angela Wright😘 for all the kind advice shared here. I check this thread constantly just to read. Sadly, my dad lost his battle two and a half months ago.
From the moment he was diagnosed through our entire struggle, I was always here reading, though I rarely posted anything. I think I just needed time to process everything—to truly wrap my head around it all and accept it.
I’m sure there are others out there feeling just like me: dropping in, reading, searching for comfort or advice. We who still have the strength should—and honestly, we owe it to others—share what we believe might help someone else navigating this.

Here is the first piece of advice from our experience, something that truly helped my dad, myself, and our whole family:
We stayed positive. We talked about the diagnosis openly; Dad didn't hide anything, and neither did we. Even with the timeline from diagnosis to his passing, we had over a year filled with genuine joy. We never gave up until the very end. And even though there were metastases, he had a beautiful year with us, and we with him. He wasn't in pain. In his case, the 10-day radiation cycles and Temodal provided the best possible results. If anyone has questions regarding anything I mentioned, or specifically about a glioblastoma diagnosis, please reach out. I am here for you.

Wishing you all the very best.

coppercanyon57 said:silvercanyon7, which hospital did you have that surgery at, and what specific METHOD was used?

I'm out right now, so I'm not sure how much those details matter. 🙂

@azaba I noticed you mentioned your mom is on morphine and ibuprofen. I had to jump in and share something that was crucial during my dad's care, though I can't quite recall the exact reasoning right now.

Once he started regular morphine doses via IV, nothing else was administered. Recently, Jane messaged me saying there’s a chronic shortage of those types of IV supplies here in the States.
One thing I remember clearly—the doctor specifically stated that Advil shouldn't be used alongside all those other painkillers (she mentioned this once he transitioned to palliative care). We were all stunned by that. Honestly, I don't even know why she said it, because she didn't give us an explanation then. So, my dad never took Advil while on his other pain meds.
Maybe Jane can weigh in on this? It might be vital for your mother to avoid that specific combination.

To provide some context: my dad was vomiting constantly for over a week. Could it be that taking ibuprofen would have made things even worse for him due to stomach issues??

I dealt with hemorrhoids. A few years back, I took some antibiotics that caused intestinal inflammation, which triggered internal hemorrhoids. The pain was unbearable. Over-the-counter creams eventually calmed them down, so I thought I was finally in the clear.
Well, here I am, stuck on those same stupid antibiotics two years later. The inflammation is back in full force. I didn't even think to connect the dots the first time I used them—it hit me too late. And of course, my doctor didn't suggest or prescribe anything to maintain my stomach acid balance. Naturally, this all unfolded while I was vacationing in the US and Canada. Just a heads-up: be careful if you find yourself needing them.

That’s when the real trouble started. It became a mix of internal and external issues, and as time went on, they all started protruding.
They flared up significantly during my pregnancy. My doctor warned me there was a high chance the pain would intensify, but thankfully, I made it through the pregnancy without major complications. We're talking massive swellings. During childbirth, they actually ruptured, leaving surgery as my only real option.
So, I finally had the surgery last May. What a nightmare it's been since then, both in terms of the pain and the hygiene requirements.
If they ever come back, I wouldn't hesitate for a single second to get surgery immediately. I used to be terrified of it, but now? Not a chance.

Elizabeth Davis said:The news for us isn't good, unfortunately. It looks like there is no cure; it’s just about extending or shortening life expectancy depending on whether they go through with surgery or not.

Did you actually get an official answer, or is this all just speculation? I really hope it's the latter.
What can I even say? It hit me like a bolt from the blue. I went to the pharmacy once to pick up some prescriptions and noticed a specific code on the paperwork—I think it was an ICD code. I searched for it like crazy as soon as I got home, and when I finally saw what it meant, I was absolutely devastated. In plain English, it basically means end-of-life care.

Hang in there and don't give up until the very end.

melloworca6 said:Or maybe she's right: time heals everything? Hardly. It doesn't make the pain any less intense as the years go by. You just eventually learn how to live with it. Does the ache actually fade, or do we just get better at pretending it isn't there? 😢

Exactly. There is absolutely no way this will cure anything; it’s just about having peace of mind and knowing how to handle it all. The simple fact that I lost my father during his prime years is tearing me apart. He should have been living his life and enjoying himself right now.

crimsongull20 said:I don't know. It’s been nearly 14 years since my older brother passed away, but as far as I'm concerned, it feels like it happened just yesterday. In fact, the void only seems to grow deeper as time goes on. Does it ever actually get easier? 😢

Sometimes I wonder where I'll be in five years, or even ten. Then, when that thought hits me, the pain and the emptiness just feel so much heavier. Sometimes I tell myself I only get five minutes with him every year. Just five minutes. And then I realize there won't be a single second left... uh... 😢

crimsongull20 said:If I were 24 again, what I would have needed most is someone telling me straight: this sadness and emptiness isn't going away. I needed to be told to treat it like a chronic illness that requires constant management, rather than a phase that time will simply wash away. It took me far too many years to finally grasp and accept that truth.

Exactly.
People who haven't lived through it CANNOT understand. No matter how much they claim otherwise, they just don't get it.
They mean well, but they often end up making things even harder for those fighting the battle.

What irritates me most is hearing: "Life goes on," or "Just stay strong." That's it? Is that supposed to help?
As if I don't know that! Those people should ask themselves: HOW is someone actually supposed to find strength when they're in the middle of this? It’s easy to give empty advice, but can anyone offer anything concrete?

A coworker once told me that grief is as vast as love itself, and that thought stays with me. You have to walk through the fire; grief isn't some temporary thing like people think. The hardest part is accepting reality—accepting that you have to learn how to live with the emptiness. And that takes time. God knows how much time.

How many cancer advocacy groups are there in America? Are there smaller organizations available for people who want to join up to learn more about a very specific type of diagnosis?

In my experience here in America, these groups have been a massive help. I highly recommend reaching out if similar organizations exist stateside.
They truly can be a lifeline, whether you need hard facts, a chance to talk with people walking the same path, or just any other kind of support and advice.

Angela Wright said:silvercanyon7, the device you’re talking about is an infusion pump. These machines are chronically in short supply in American hospitals, so they aren't even available for home care. They are incredibly expensive.

Over here, they call them "smertepumper" (in Norwegian), which if I were to translate it literally, would mean "pain pumps."
It’s a shame everything is viewed solely through the lens of a few 😢 dollars. They provide such incredible relief and are so much more practical than anything else. When someone has zero strength left, even sipping water or dealing with constant needle pokes feels worse than death itself.

@hollowridge88/">@@hollowridge88, based on what you've written, it sounds like you're fully aware of how bad things are. With my dad, it all started with vomiting; he couldn't eat a thing, yet the vomiting just wouldn't stop. It turned out to be an infection—unfortunately, his body just lost the fight against the monster. I don't know exactly how things are handled in the US, but please contact a home health doctor or similar professionals so they can assess the situation. This is incredibly hard, but the most important thing right now is making sure she is as comfortable as possible.

My dad had an internal venous port implanted, so he’s been receiving everything through that for the last two or three weeks instead of getting poked in the arms for every little thing.
They were drawing blood through it, too.

I know he mentioned it stung and hurt right after they put it in, but he was much happier with that than being stuck with needles constantly.
I'm not sure if this is standard practice here in the States, but they gave my dad a similar setup—kind of like a continuous infusion system (I don't even know what to call it)—where a digital pump was programmed to deliver his Morphine regularly so he wouldn't be in pain. If he actually felt a spike in pain, which happened maybe once or twice, we could just press a button on the digital device to give him an extra dose. Thank God he wasn't in agony because of that; we are eternally grateful to them for it.

Austin Miller72 said:I think she's drinking plenty of water. Today, the guys at the ER told me they suggested a medication to the doctor similar to the one you mentioned. I know I need to take care of myself, but it’s just so difficult. I don't have any appetite either, though I force myself to eat a little bit.
I really hope she feels better soon....

I know exactly what you mean. When I wrote about taking care of yourself, I meant things like getting out into some fresh air, going for a walk, talking it out with someone, or even just having a good cry if you need to... just anything to ease the soul. And I know—you can't run away from all of this, even if you desperately want to.

I'm not in the US, so I'm not sure what that powder might be called here, but just explain what it is (our translation includes salt and sugar).
And yeah, don't drink it the way people normally do. It helps a lot to sip everything through a straw so it doesn't overwhelm your system too much. That's the kind of advice we used to get.

Austin Miller72, I can only imagine what you're going through right now. I remember exactly how it felt when my dad first got his diagnosis and started his initial treatments.
For instance, my dad didn't vomit even once during chemo, but the treatment didn't help him at all either. It is incredibly hard to watch all of this unfold, but I truly hope that her reaction is some kind of sign that the medicine is actually working, especially since she's struggling so much.

Make sure she doesn't get dehydrated. Someone already mentioned an IV, but why not ask the doctor if there's something she can take at home as a preventative measure? I know there’s a type of powder you can find at any pharmacy that you mix with water; it contains electrolytes and glucose.
Pick up some salty snacks. It’s hard to say for sure what helps, because everyone reacts differently.

And even though you're handling this yourselves, I really hope you have close family or friends nearby. Having support means everything in moments like these. Please look after your mom, but don't forget to look after yourself, too. Fighting a monster like this drains every ounce of strength from a person.

steeleagle152 said:To everyone fighting: hang in there and crush that monster. Wishing you all a very Merry Christmas and a happy, healthy 2014.

I second this.
Don't give up. We never have, and we aren't starting now (even though Dad has drifted into his deep sleep). We won't let this monster rule our lives. Every day, we cherish our time and stick together.

We did it during Dad's fight, and we're doing it now, even a month after he fell into that deep sleep.

Sending plenty of warmth 🙂 to everyone battling monsters in their own way. You are strong. Hold on!

@Olivia Cook48/">@@Olivia Cook48 & hollowridge88,

Unfortunately, I understand exactly how heavy this feels for you both. I know firsthand what it was like when my father started his treatments, and then reading through all those medical files. You always find yourself hoping for a miracle. For me, those first few months were the absolute hardest. Then, just a few months after the diagnosis, the biggest battles began because Dad couldn't even stand up; his legs were just limp, like two empty socks—zero muscle tone. But then the training started, the physical therapy kicked in, and a miracle actually happened: Dad stood up. He could even walk around the house without any help at all. He was going up and down stairs. He had such incredible willpower, stayed positive, and so did we. My mother is sensitive; she couldn't always control her emotions (especially at the beginning), and that frustrated him terribly. He wanted us to be laughing and upbeat.
And I was! I had one beautiful year with him, where every bit of progress he made showed us that anything was possible. And he didn't suffer a single day of pain—not for one full year.
Then, suddenly, everything went downhill. Dad started vomiting, and the hospital determined it was an infection. Even then, the doctors kept encouraging us, saying things were serious but that he could pull through. I believed them. Three weeks after all the questions and answers in the hospital, my father closed his eyes. It hadn't even been a month. It hurts; I wouldn't wish this on anyone.

What am I trying to tell you? After everything that happened and everything we went through together, I am grateful that I was by Dad's side 24 hours a day for a year. I was on maternity leave, and he watched me navigate my new role; along the way, he watched his granddaughter grow, he learned to walk again, and he didn't have a single day of pain. We joked around and made plans, but then everything unfolds so fast that it feels like someone stole him away from us.
I am glad he wasn't in pain. I am glad I know that my family and I did everything within our power. I am glad he saw how much we care and how we stood by him through the entire period, even when things were at their worst. I am glad that I can sit here now and smile at all those memories, knowing he received the best possible care during those last three weeks. He was clean, comfortable, and rested exactly as much as he needed. When he needed us by his side, we were there. Not just at night, but always. He was never alone, even in the hospital.

Stay close to your mothers. Be positive—I know how hard that sounds, I was the same way back then and still am today, but truly, it can mean the world to your mom—but once you step outside, let it out. Cry, vent, and do whatever you need to do to ease your own heart.

Throughout all his treatments, my dad kept basically the same diet he had long before his diagnosis. He wasn't interested in adding a bunch of supplements to his routine—or maybe he just couldn't wrap his head around it back when he was healthy. To be honest, I have to start with myself: how would I even handle it if my family was constantly rushing around, trying to force-feed me every supplement they could find? I know it comes from a place of love and concern, but still. Don't try to play doctor. So many supplements can actually do more harm than good.
What was written above is exactly why I refused to push anything on my father until I knew more or had consulted a professional. Even if I had tried to nudge him, I know he wouldn't have listened. That's just who he is. He wants what's been through clinical trials, not to act as some kind of guinea pig.

Michelle Cook83 said:Hello to everyone fighting the good fight! I'm wondering if anyone here has actually tried Xeloda? What has your experience been like so far?

Michelle Cook83,

Xeloda worked better for my dad than any other medication he’s ever taken. What is the specific diagnosis? What exactly are you looking to find out? Feel free to send me a private message if you want to chat.

This morning, my dear, sweet father closed his eyes and drifted into his eternal sleep. I can't see a way out of this grief. I feel like a lost child. 😢

I just got back from the Mayo Clinic. I've been spending every waking moment by my dad's side. This morning, he actually said goodbye when I had to head home. A few hours later? Total silence. No greeting, nothing. 😢
Desi has his eyes closed, but there is absolutely no connection left with us. 😢Is this really how he says goodbye? My heart and soul are shattering into a million pieces.
I honestly can't believe I'm losing my best friend. 😢