Surgery for pilocytic astrocytoma: When will I feel like myself again?

@randallshields56 hi yes, I’d love to hear how your two years has been and what type of tumor/surgery you had, etc.

@ittybitty ok, well the two years had me struggling the first 9 months, my tumor was just under glioblastoma next one down. march 29th was two years from first surgery and shortly after that they had to go back in the same spot as the first because of a brain bleed. Mine was right frontal lobe area but was massive and cancerous. had two ground seizures days just before my surgery, after the last one i lost my short term memory and had peripheral vision loss in my left eye to almost half. have had to learn how to overcome and adapt. well i have to go feed some critters so i will get back to you in a little while.

@randallshields56 Part two that brings us up too having to relearn speech somewhat but mostly cognitive functions and slowing my speech down. had to train my brain to think of what i wanted to say before i said what i wanted to say.
had to learn balance all over again and it took about a year before i could as you say start getting ahead of myself, seemed like i could not heal as fast as i wanted and it was taking forever. had other difficulties that are hard to mention, like severe anxiety that was manifested in my subconscious along with depression and not being able to control anything like i had done for the last 50 years.

@randallshields56 part three. councilor and brain games to learn, retrain what is broken and do it with active seizures. Medication issues and finding what worked and what didn't. everyone is different in how they react. i have to adapt and overcome as my family here were my caregivers up to and including my grandson that lives here with my daughter and her wife and me. it was a long road leaving the hospitals. My drive is my daughter and reason for getting up every day. she not only took care of me, her stepdad had throat cancer and like next month he will be getting a new jaw because now because of radiation so much he has no jaw to eat and is like under 100 lbs. and then her mother has mouth cancer of some kind. so she drives 6 hrs one way to take them to appointments while trying to survive herself and her failing body. auto immune disease where her own blood attacks her system thinking it is an intruder. she is in pain i can not put into words. Her wife has deteriorating disk disease and also in pain so bad at night has to fight to get a good nights rest. ( we are all medicated here of some sort ) and that is every day every hour. look at me wrighting a book, actually i could but it would be long and a dramatic, funny, sad, and at times heartbreaking. i still today have issues with loosing my balance at the same time dizzy and they found a mass in my brain this last go around but believe it to be a radiation crust that has calcified and not growing. least that is there story and they are sticking to it. so a medication they don't want me on for 3 weeks then 4 infusion treatments after that. right now if you would like you can ask me what i do for a weekly routine if you would like to know. ok gonna chat tomorrow. just took my night meds and it can be anywhere from 15 minutes to an hour and i better be ready for bed. Have a blessed night. I'm Out

Wow, you and your family are all dealing with a lot. I’m so sorry. I expected a rough even 6-9 months or so but didn’t expect all the emotional issues that have come about and are still hanging around. I tried therapy but didn’t find it helpful. I hear stories like yours that are so much worse and feel I don’t have a right to feel like I do and should be grateful mine isn’t worse (and I am), but it’s hard to feel grateful and also angry and anxious at the same time. I have always been determined and active and now find myself just wanting to sleep the day away to help avoid everything and try to cope with my headaches…. But I can’t sleep well anyway because of the headaches so I’m not sure why I try to cope with them that way, lol. Then I feel guilty because I have things I need to do and I need to be present for my family (but I’m cranky because I feel like crap so I’m no fun anyway). It’s been an exhausting, hard year-and-a-half post surgery.

I have the same- cerebellar, diagnosed in my 30’s. They are apparently extremely rare in adults so I dont hear from many people who have had them. I had my surgery a year and a half ago- wasn’t able to remove it completely. Mine is cerebellar. Did you have yours removed? How are you doing by now?

I had my surgery about a year and a half ago now but just found this tumor support board last week. Anyone else with an “Adult” Pilocytic Astrocytoma that would want to connect? I was told they’re extremely rare and studies and behavior seem to vary widely between the pediatric and adult tumors. Mine is cerebellar and I had an incomplete removal so we are still monitoring it.

@ittybitty well don't beat yourself up, it is not good for you really. as to others with much worse issues that cannot be good either. you just have not found what works for you. My day i can now see how many people i know are in worse shape, i can feel sorry for them and help if i can, usually a good poke in the are saying look for a bright side and smile once in a while. it makes them think you're up to something and you are. trying to figure out how to feel better. I stay busy to help me cope. as busy as i can. This is Sunday my day of the week i do not exercise because it is my rest day. I exercise 6 days, 7th is rest and worship for some, i get up have my coffee and then decide what my day will be and thank God for having me on this side of the living. if the doctors cannot figure your headaches out with meds or treatment get a second opinion. you have to feel half way good to want to do things. I cleaned the bathroom and tub and shower, lastly took a shower. the heat felt good, no seizure today and not in a lot of pain. that means i am having a good day, could tell you 20 things that could make it better but is Sunday so i am going to send you this smile === and a hug === and some sunny vibes to maybe brighten your mood a little and lastly a special prayer for healing and comfort in know the other side of feeling better..............----prayer sent along with have a blessed day .

Appreciate the like, hug, helpful suggestions, i was a little on a roll
with making a book. lol

@ittybitty hello again and welcome. part 4- well lets see. no cancer last tests and the doc has me on a med i cant stay on so start infusions this next Monday. since last sort of got hit by a tree, knocked hip out and a rib i busted in 2021 to get out of place so just babying it. my spirits are on the mend and doing good. Hope you are too. the infusions are to replace the drug i am currently on.so everything's a plus today. sister is at the mayo in phoenix getting treated for V fib and meets with her surgeon Thursday for a game plan to fix her. My little brother will buzz me later today and we can become more like brothers again i hope. when he is quiet it usually means he's up to no good. Will have to wait and see. My caregiver that is here 5 days a week had a miscarriage at a very young age and i feel honored that she would let me in that conversation. she's kind of like family now. next month she takes me to another appointment again. we make a day of it. she is out today for doctor appointment for cramping same place. ill send prayers that way for her again to help her in her struggles. were i well enough financially i would kelp her and her family in their struggles right now. the meds they want to use are for my cognitive and dizzy spells along with balance. will keep you posted. sure hope you are doing good today and it is your turn to speak out. Have a blessed day.