Posts by shadowbison75

ruggedgardener74 said:How's everyone doing? This thread went quiet...

What's the situation on your end?

Checking in every single day just to see if anyone is actually active on this thread...
It feels a little safer here. Gives me a sliver of hope... maybe enough to keep going through all this...

We're just waiting on the radiation appointment... praying every morning they'll finally call us. Though we aren't even sure if the radiation will help or just make things worse... 😢

Dad has gotten so weak... he's getting 5 or 6 meals a day through the gastrostomy, but he's still fading...

Just wrapped up the ENT appointment and the first oncology consult...
The hospital is absolutely packed, but seeing those hallways full of people outside the oncology clinics just hit me hard...😢

Dad’s been referred to the Mayo Clinic in Seattle for radiation, starting with an initial evaluation to see if he's even a candidate... Depending on what they decide, we'll figure out the next steps...

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...

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.

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... 😢

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...
😢 😢 😢

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?...

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?

ruggedgardener74 said:I'm 62...

Don't even get me started on our doctors and hospitals. You basically have to become an expert overnight if you actually want to help your loved one through this.
Just feeling lost, sad, angry, and completely desperate...

EXACTLY!!!

I won't even go there since I'm sure we've all lived the same nightmare, but it’s honestly pathetic that patients and their families have to rely on Google and the internet for answers during their darkest moments.

And trying to actually reach a doctor—whether in person or over the phone—is a mission impossible.

Kudos to the few exceptions out there...

True, what you said about surgery hits home: sometimes things actually get worse after the procedure. A lady I know—her husband had a similar diagnosis—told me that looking back now, he’d never agree to the surgery if he could go back in time. So... how do you make the right call?

Maybe it sounds naive, but you know that feeling where you think surgery will just... excise the beast inside you? That's my layperson's take on it, anyway.😢

Dad is 63...

As soon as the doctors finished the scan and diagnosed my dad's tumor, they told us right away it wasn't operable 😢 honestly, it just crushed us. We knew things were bad, we knew it was likely malignant given everything he was feeling, but hearing surgery was off the table... it just broke everything. He has an appointment with the oncologist next week, so we'll see what the plan is then.

He spent 14 days in the hospital where they had to put in a tracheostomy and a gastrostomy. He’s being fed directly into his stomach now because he can't swallow... he's gotten so weak. I don't even know if they'll offer him any kind of treatment at all.
While he was still in the hospital, they already assigned him to palliative care, explaining that this is a heavy diagnosis and it's good to be on the list, though to me, it felt like they'd already decided there was nothing more they could do.

Coming here to read about your experiences helps a little... makes it feel like we aren't completely alone. But every day just keeps getting harder...

ruggedgardener74 said:I spent about four hours yesterday scrolling through this Reddit thread from the very beginning... just trying to see if my mom and I were alone in what we're going through with Dad's illness. We’re at month 14 with glioblastoma, and things started taking a turn for the worse two months ago. No matter how much you hope or pray, the disease follows its own rules. I admire all of you. Regardless of how things end for your loved ones, you're all heroes in your own stories. It breaks my heart that anyone else in the world has to endure what we are... Thank you all for providing even a little bit of comfort during these hard times.

🙂
Unfortunately, you aren't alone. 😢 I showed up here about a month ago after my father was diagnosed with a tumor.
Like most people, this Reddit has been my source for info, faith, hope, and comfort... I check in here every morning and every night. Sometimes I post, sometimes I just read...
It’s just been incredibly heavy lately, and I'm really looking for some solace here.

Is your dad at home or in the hospital?

Linda Kern38 said:Dad's home from the hospital for home care. Temporarily. The discharge papers say he goes back on March 29th, and before that, radiation at the Mayo Clinic. It says palliative radiation. I'm broken. Two weeks ago they thought he was fine, just old age issues, and now it's palliative radiation. That word—palliative. I can't get up, I can't read. I can't talk. Until now, I thought it was a mistake. He’s being so good and patient.

Sent from my Samsung Galaxy using Reddit

Walter Nguyen4, I am so sorry about your father. 🙂

What's the diagnosis?

My dad was diagnosed with oropharyngeal cancer, where surgery wasn't even an option because of how big the tumor is. After 14 days in the hospital getting a tracheostomy and a gastrostomy, he was sent home.
Still waiting on the call regarding the pathology results from the biopsy.

But what really crushed us was that exact word, "palliative"—when they told us we were assigned palliative care and everything that comes with it... we just fell apart.

He's physically quite weak, lost a lot of weight... I don't even know if they'll give him any therapy (radiation, chemo...). Mentally he's holding up okay, as much as that's even possible since he's aware of everything and knows the scenario is bad... 😢

Hi,

Anyone here dealt with getting a tracheostomy and a G-tube because of oropharyngeal cancer?

Looking for any advice or shared experiences... if there are any out there.

I don't want to start a whole new thread, so I'll just drop this here even though things have been quiet lately...

Because of an oropharyngeal tumor, my husband had to undergo a permanent tracheostomy.
As others on this board have already mentioned, there’s a lot of secretion coming through the stoma, and we’ve been shown how to clean and maintain the cannula.

Does that amount of secretion eventually taper off over time?
Is there any hope that he might eventually get back to some kind of normal daily routine?
What is life actually like with a tracheostomy? We all know nothing will ever be the same, but I still find myself hoping....

It’s only his fourth day in the hospital... maybe once he's discharged after these procedures and we actually see the results, we can start thinking about it. We don't have any of the test results on hand since he was admitted immediately following the exam.

Pula Hospital.
Not really sure about their specific experience, though I hear the doctors over there get a lot of praise...
Patients seem to have nothing but good things to say about ENT.

Just got a quick update from the doctor on duty. She didn't sugarcoat it... the tumor is too large and has spread too much to be operated on.

Tomorrow they’re doing a tracheotomy, putting in a gastrostomy tube, and taking biopsies.
Once those results are back, they'll decide on some combination of "treatment"—chemo or radiation—but he’s already so weak.

Not sure how much time we actually have left, but I'm not holding my breath...
It feels like they're just trying to make him comfortable now. They aren't expecting a recovery...

Eric Newman75, THANK YOU, THANK YOU, and thanks again.

I really value every word and bit of advice shared here. I find myself going back to every single post, reading the responses over and over...

Honestly, hearing they won't perform the surgery was a gut punch. It’s like the surgery was the only thing keeping hope alive. Now, radiation just feels like a losing battle...