Glioblastoma- Help

Stephanie490
New Contributor

Glioblastoma- Help

Hello Everyone,

 

I am in desperate need of support from someone who has been or is going through nearly the same experience. 

 

September 2021- My father was diagnosed with Stage 4 Glioblastoma.

He had surgery a week later and they removed 95% percent.  We got a prognosis of 12-18 months with all treatment. 

 

 I've had to leave my home that I recently purchased, left my relationship of 12 years and my job  to move into my Dads to be his full time Caregiver.  I am beyond stressed and feeling resentful even though I would never express that to him.   

I have no help at all. No siblings,  he is single so no wife, his brother and sister aren't in the picture and the rest of my family is in another country. I am ALL alone and I'm feeling so displaced. My dad is my rock and I love him immensely and I will be here for him and I AM here for him... I'm just having a really hard time adjusting. 

 

He doesn't do much besides lay around and watch TV.  He needs constant supervision as he isn't capable of making nutritious meal choices, he'll get into his medications, possibly may fall from off balance, he can't do his own laundry because of the stairs leading to the washer/dryer,  can't pay bills/ use technology properly anymore and his memory is going... he couldn't be left to live alone. 

 

He did 6 weeks of radiation and we just finished round 2 of the oral chemo (Temozolomide). I was told that each round gets stronger. He has had 0 side effects. He's awake from 10 in the morning to 1am the next morning. No motivation...  just laying around. 

 

I guess my biggest question is, How long does this drag on for ? I am all about quality over quantity. This isn't good for either of us.   This tumour is going to come back and It drives me crazy to think this can go on for months or even YEARS. 

 

I've lost 7 pounds in 4 days, I'm depressed, I'm absolutely bored out of my mind.. and I just feel again..displaced. This isn't my home anymore... I want my life back.

 

Has anyone been through a similar experience? 

I'm also very confused because the prognosis is 12-18 months but some people are living for years longer.  

 

 

 

 

 

 

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