#3461 ·
Dad ended up staying in the hospital today. Things have taken a turn for the worse; they’re mentioning progression, and his CRP levels are massive now.
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Support for families dealing with cancer and other serious illnesses (Part II)
Support for families dealing with cancer and other serious illnesses (Part II)
Started by Angela Wright · · 👁 29 views · 3.6K replies
Participants
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#3462 ·
ruggedgardener74 said:Dad ended up staying at the hospital today... Things aren't looking good, they're mentioning progression and his CRP levels are through the roof.
How’s your dad doing? Any updates?
#3463 ·
Better... They took him off chemo, and the progression is minimal. Now we're just trying to figure out the next move.
#3464 ·
ruggedgardener74 said:I spent about four hours scrolling through this Reddit thread yesterday... just needing to know that my mom and I aren't alone in dealing with my dad's illness. We're at 14 months with glioblastoma, and things took a sharp turn two months ago. No matter how much you hope or pray, the disease follows its own logic. I admire all of you; regardless of how things end for your loved ones, you are all heroes in your own stories. It breaks my heart that anyone in this world has to go through what we're going through. Thank you all for providing even a small amount of comfort during these hard times.
Dear ruggedgardener74, I completely understand you.
This place has been both a source of comfort and information for me, too. Ever since my mom was diagnosed with glioblastoma, I’ve been scouring these pages looking for any way to help her. During those last two months of her life, it wasn't really my mother anymore—it was like a different personality had taken over her body. Beyond the helplessness of not being able to fix anything, the hardest part was when I stood by her bed and she wouldn't recognize me, or if I stood on her left side and she simply couldn't see me. That was devastating. She would have these intense fits of laughter—the kind where you can't help but smile seeing her laugh, but then the moment I leave the room, I break down because I realize that laughter isn't conscious; it's just the tumor.
She passed away eleven months ago, just the way she wanted—peacefully in her sleep without pain. She was 60, and I miss her more every day...
#3465 ·
Chloe Bennett5, I am so sorry about your mom. This disease is a nightmare.
I’m still fighting, and I have no intention of backing down, regardless of what the odds say—whether it's the statistics, the progression, or just the nature of the illness itself. Today, however, gave me a glimmer of hope; the progression over the last two months has been minimal. Because of that, I made a pretty drastic decision today: no more chemotherapy. I’ve got a specific strategy in mind, and I’m going all in on it, whatever happens.
My dad always stood by me, even when we didn't see eye to eye, and I’m doing the same for him. I still believe he’s part of that 5% who make it through.
I hope you've been able to find some peace after such a devastating loss. At the end of the day, family is everything.
I’m still fighting, and I have no intention of backing down, regardless of what the odds say—whether it's the statistics, the progression, or just the nature of the illness itself. Today, however, gave me a glimmer of hope; the progression over the last two months has been minimal. Because of that, I made a pretty drastic decision today: no more chemotherapy. I’ve got a specific strategy in mind, and I’m going all in on it, whatever happens.
My dad always stood by me, even when we didn't see eye to eye, and I’m doing the same for him. I still believe he’s part of that 5% who make it through.
I hope you've been able to find some peace after such a devastating loss. At the end of the day, family is everything.
#3466 ·
ruggedgardener74 said:Chloe Bennett5, I am so sorry about your mother. This disease is a nightmare.
I’m still fighting. I refuse to quit, even if everything—the statistics, the progression, the nature of the disease itself—is stacked against us. Today, I actually felt a glimmer of hope; the progression over the last two months has been minimal. I made a pretty drastic decision today: no more chemotherapy. I have a gut feeling about this path, and I'm going all in, whatever happens.
My dad never gave up on me, even when we clashed, and I won't give up on him. I'm still holding out hope that he falls into that lucky 5%.
I hope you've been able to find some peace after such a devastating loss. At the end of the day, parents are everything.
Dear ruggedgardener74, I know exactly what you're going through because I've walked that same path. You can look back at my old posts if you want. To make a long story short: in September 2012, my mother had surgery for colorectal cancer. Just as we were prepping for chemo, they found metastases in her liver, which she had operated on in December. The prognosis was three to six months. But my mom is a fighter; she doesn't go down easy. She pushed through chemo all through 2013—the Folfox IV protocol, 12 cycles... and look at her now! She's alive and shows no signs of illness. We are entering our tenth year. Her oncologist says there isn't even a statistical category for her; she simply defied every prediction and statistic out there!
Anyone who sees her would never guess how much she struggled, but she did. It was incredibly hard. I forgot to mention that in May 2021, she had to undergo a heart procedure due to severe fibrillation... but that's all behind us now. You have every reason to believe in that 5%. She stayed consistent with her chemo. It wasn't easy—cycles four and seven were brutal—but she fought through them like a hero. So, it comes down to the chemo and the supplements. I don't know if you're religious, but I have to say that prayer and faith in God kept us going.
She still takes beta-glucan. For three years, she squeezed fresh juice from beets, apples, carrots, and lemons every single morning, along with chokeberry.
She is 75 now. She handles all the housework, walks more than two miles every afternoon, and as soon as the weather warms up, she's out swimming in the ocean, both early in the morning and in the afternoon.
I hope our story gives you at least a small shred of hope. I celebrated every tiny bit of light at the end of the tunnel. Even now, I celebrate every good scan; I practically dance and sing for joy!
#3467 ·
Hannah Reed3, hearing stories like this really does help...
We all need to hear about some positive outcomes during these rough stretches...
I wanted to ask, based on what you've seen, how honest is an oncologist actually being with a patient regarding their prognosis?
Do they really just lay it out straight, or do they sugarcoat things and withhold months or years from the patient?...
We all need to hear about some positive outcomes during these rough stretches...
I wanted to ask, based on what you've seen, how honest is an oncologist actually being with a patient regarding their prognosis?
Do they really just lay it out straight, or do they sugarcoat things and withhold months or years from the patient?...
#3468 ·
Hannah Reed3, thanks for those words of hope. There is a lot of divine providence in your story, and thank God Mom is doing well.
Stories like yours mean a lot to those of us still fighting through it.
shadowbison75, most doctors just serve you cold statistics.
Here’s an example from the day before yesterday: "You know what this disease is like; there's no hope left. I've seen people lose their legs in two days."
I'm no expert—we're in the same boat—but I never took it too seriously, because according to them, he's already lived far too long.
Stories like yours mean a lot to those of us still fighting through it.
shadowbison75, most doctors just serve you cold statistics.
Here’s an example from the day before yesterday: "You know what this disease is like; there's no hope left. I've seen people lose their legs in two days."
I'm no expert—we're in the same boat—but I never took it too seriously, because according to them, he's already lived far too long.
#3469 ·
Dad understands how heavy this is. Right from the first consultation, they didn't sugarcoat anything—told us straight up it was a tumor, and a large one at that...
The CT scan just confirmed what they already saw during that initial exam.
So, Dad's been aware from the start that he arrived too late. He got his discharge papers too, so he could read through everything himself...
But I’m still torn on whether I should tell him plainly how many months he actually has left...
😢 😢 😢
The CT scan just confirmed what they already saw during that initial exam.
So, Dad's been aware from the start that he arrived too late. He got his discharge papers too, so he could read through everything himself...
But I’m still torn on whether I should tell him plainly how many months he actually has left...
😢 😢 😢
#3470 ·
shadowbison75 said:Hannah Reed3, hearing stories like this really does help.
We all need some positive outcomes to hold onto during these brutal days...
Based on your experience, how honest is an oncologist actually with a patient regarding their prognosis?
Do they really lay it out straight, or do they sugarcoat things so the patient doesn't have to face the truth for months?
Our oncologist was direct with us. They phrased it as, "Given the situation, here is what we can expect during this period," but the message was clear. My mother didn't mince words—she asked him exactly what he thought.
In medicine, math isn't always simple. Sometimes 2+2 equals 5, and unfortunately, sometimes it's 3.
#3471 ·
Look, we haven't spent a single moment at home discussing this. It's not like I'm feeding my dad fairy tales; I know him too well. If we start getting into how much you actually have left, the conversation is over.
How is your dad doing?
How is your dad doing?
#3472 ·
ruggedgardener74;91698941 said:Hannah Reed35, thank you for those words of hope. There is so much divine providence in your story, and I thank God that your mom is doing well.
Stories like this mean everything to those of us still walking through the fire.
The oncologist actually told her point-blank: either God loves you deeply, or you love and pray to Him with everything you've got... there is no third option.
I’ve always found myself praying the same way: Let Your will be done, not mine. You know exactly what I want, but let Your will prevail instead.
And God worked a miracle. In my heart, I know and believe that is the truth.
#3473 ·
shadowbison75 said:My dad understands how serious this is. From the very first appointment, they were blunt—they told us straight up it was a tumor and a large one at that. No sugarcoating.
The CT scan just confirmed what they saw right away.
So, my father has known from the start that he’s late in the game. He even got his discharge papers, so he could read all the details himself.
But I honestly don't know if I want to be completely blunt with him about exactly how many months he has left...
😢 😢 😢
We only really talked about the illness when she was the one to bring it up. Those conversations were a mix of tears and laughter... it was strange. We’d find ourselves making jokes about death just to cope.
The reality is, this disease doesn't just hit the patient; it hits the whole family. You have to face an unpredictable, relentless enemy together.
#3474 ·
ruggedgardener74 said:Look, we haven't brought it up once at home. It's not like I'm feeding him fairy tales, but I know my dad inside and out. If we start talking about how much time he has left, that's where the fight ends.
How is your dad doing?
We don't talk about it at all, and I know for a fact he won't be the one to open that door.
Even if it crosses his mind—and it definitely does...😢 —he keeps it to himself.
Whenever we talk, it’s just the usual stuff. Work, what's new, life goes on. I wouldn't say we're "sweeping things under the rug," but honestly, I can't bring myself to mention death as an outcome. I think he's already fighting enough battles in his own head.
We have our first appointment with the oncologist tomorrow. I'm scared... I can't even explain why. We know the diagnosis, yet the fear is still there.
Dad believes he's going into this fight. He's actually looking forward to the appointment. He truly believes treatment is coming... 😢
#3475 ·
We went through the exact same thing. My mom and I were losing our minds before meeting the oncologist. To be honest, our doctor wasn't exactly soft, but I don't think they'll just lay out the darkest possible scenario right in front of a patient. Don't go into an oncology appointment with all your tests already back and the news being grim. And realistically, you won't end up talking about the disease itself as much as you'll talk about treatment options. Just stay strong.
#3476 ·
ruggedgardener74 said:It was the same way for us... My mom and I were losing our minds before seeing the oncologist. To be honest, ours wasn't exactly gentle, but I still don't think they'll give you the absolute worst-case scenario right to your face. Don't go in there when everything feels like it's falling apart. And honestly, the conversation usually shifts from the illness itself to what can actually be done about it. Just stay strong...
I'll let everyone know how it goes!
Thanks so much.
#3478 ·
ruggedgardener74 said:Keep me posted... Fingers crossed.
Thanks, truly. 🙂
Every word counts... Even though we're strangers, letting it all out here makes things feel a little lighter...
#3479 ·
Hey everyone, I’ve been lurking here for a while whenever I get a chance. I was wondering if anyone has experience with Sutent. My mom had a radical nephrectomy back in January after they found kidney cancer. A few weeks after the surgery, she started having pain in her back and pelvis... She was sent for a bone scan, and they found metastases in her spine, pelvis, and femur. The recommendation now is radiation and Sutent. I’m still in total shock—just disbelief and sadness. I don't really know how to handle this. Will this medication actually help? She seems to get weaker every single day; she can't even get out of bed anymore, so she just stays there for everything. She's on Duragest patches and taking Zaldiar, but it feels like she’s becoming increasingly lethargic because of it. Her appetite is disappearing, too; I have to practically force her to eat something or take her Suportan. Does anyone have any advice? Or maybe a similar experience? It's incredibly hard watching her like this. I just can't wrap my head around it yet. 😢
#3480 ·
Give CBD oil a shot; do some reading on it first. It helps with pain management and boosting appetite. I’ve seen it work firsthand with a cousin of mine.
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