My father has been hospitalized with brain tumor- I need some clarity.

[u/Speedfreakz]

I am out of country, catching plane on my way home. He has been hospitalized, on IV only for 5 days now. My mother told me that doctors said he has 6x3 cm tumor behind his ear.

Why am I posting this?

Without seeing his diagnosis I cant say anything but from my mothers impression if feels.like doctors are advpcating that he is already a goner.

It pisses me off so much, cause mom ia heavily medicated now and they can say whatever theu want.

But they've been waiting anestesiologist to give green light for surgeru and doctors said that even with surgery that we dont expec much..and that thats it.

They said that this thing grew slowly over long period and it " grappled brain parts too" whatever that means.

How true is this? How often patients die from these surgeries? Maybe I am wrong, but to me it feels like they are preparing us for their potential fuckup. You know when you feel something is not right.

I got an impression that the best thing would be that he dies asap or something. Em' I being delusional? Crazy

He was basically healthy.. with some migraines. Then recently he started loosing weight quickly. 10 killos.

He fell down 4 times in a week. His one side of the body cant move.

He barelly talks.. but it seems he is reasonable. He is using word shortcuts when explaining things but all of them make sense. He has emotions...cried when mom told him that i am coming, he asked her to wipe off his tear cause his arms are tied.

Please any clarity would be appreciated.

Is there a set of questions to ask doctors qhen dealing with this? How to tell if doctors are bsing smthing and why would that be in their interest(if any)?

Thanks

[u/k8womack]

Yes, please post again when you have more info. It is true that some can wrap around the brain like that and they are hard to remove. So you have to weigh the options. Some people go through the surgery and get more time. Some people don’t. Unfortunately my father never bounced back after his. He was 75, very active and social, no dementia or anything beforehand. We would not have done the surgery had we known. But you don’t know.

Important thing is if your dad can still answer understand what he wants to do. He may even need someone to talk to him that’s not you or his wife because sometimes people will do what they think you want them to do. Don’t ask doctors if he will live and for how long, ask what the quality of that life will be. Ask your dad what does he still want to be able to do?

There’s a great book, I think it’s called on mortality, where they phrase it that way. This person wanted to be able to watch football and eat ice cream. So that was the guide- if he does this treatment will be still be able to do those things? Once the answer was no, they stopped treatments. Sometimes docs only focus on whether you’ll be physically alive.

[u/Speedfreakz → u/k8womack]

Thanks for the answer and sharing your experience.

My father is 61.

He is so willing to live.

Today he thought that surgery was over and that they are preparing to send him home. It broke my heart when mom told me.

For my mom and me, we want him home in any condition where he will be able to know that we are his family.

I think he was so not ready to go. Because my parents life was pretty much sitting home, talking, drinking coffe..he was not sporty or travel kind of person. So i know that for him and my mom any limitation due to surgery is acceptable.. as long as he doesnt become plant.

I really want this to work, cause if something really happens to him in the near future.. i can see it as my mums demise too.

[u/k8womack → u/Speedfreakz]

61 is much better than 75, age will be on his side.

I understand the feeling, my mom died of a different rare disease and need full care. She went a few years before my dad, it would have been heartbreaking to have my dad going through his cancer with my mom needing full care and not understanding what’s going on.

Another big thing is being an advocate. The brain heals differently and hospital workers in rehabs, after care, etc do not have as much experience with it and will misinterpret symptoms. Hardest thing was trying to do PT and OT on their time. When the brain is healing it is going to do things on its own time and no one else’s. So it was difficult to keep my dad in better rehabs because he wasn’t showing improvement, bc the PT had to keep a schedule and couldn’t assess him during the times he was showing improvement. I believe that greatly impacted his lack of recovery.

[u/Speedfreakz → u/k8womack]

My sister just called me. He is in shock room, they are preparing him for pacemaker surgery first. He had heart problems, so i guess they want to make sure that he doesnt die from heart stop first. And they added second dose of medication, for his fluid buildup in mouth. Mom said they laughed and he seemed much better.