Glioblastoma- Help

Stephanie490
New Contributor

Glioblastoma- Help

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.  

 

1 REPLY 1
LindaG
Frequent Contributor

Re: Glioblastoma- Help

Hi Stephanie, so sorry about your situation with your dear dad. I can only relate to being overwhelmed with caring for my darling mum who has now died. Dad cared for mum and when he died I helped look after her with my sister, brother and carers. Even with all of us it became too much. We are all in our 60’s and just kept getting sick because of the stress and physical exhaustion. We had to make the heartbreaking decision to put her into care. It was the worst of times. If you are just looking after your dad by yourself you will burn out very quickly. Is he eligible for any care helpers? You really need to get help. Otherwise you will probably get sick. Don’t feel guilty about your feelings, well try not too! 💕🙏 Linda G 

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