mandyarm
New User
Joined: 18 Aug 2006
Posts: 1
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 Posted: Fri Aug 18, 2006 9:35 pm Post subject: normal?? |
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hi. i am writing here because i feel so helpless. my father was diagnosed on june 25th with gbm, and its been a little over a month, and so much has happened. unfornuntaly, myself and my family are no stranger to cancer, my mother passed away 5 years ago from lung cancer, so we all have been down this road. it doesnt make it any easier, if anything, harder. my dad opted to have surgery to remove more than half of his tumor, however, they could not fully resect it. the night that he had the surgery on he was fully functioning, talking, remembering his name, the year, his children's names, etc. all positive. the next morning, i went down to the nicu and sat with him, i noticed he was acting strange towards me, but i figured, hey, he just had brain surgery, dont worry about it. the next day my dad wouldnt speak to anyone, hardly opened his eyes, and really just wasnt there it seemed. the docs said it was due to swelling in his brain and put him on decadron. slowly , but surely, he improved. the doctors said my father would "emerge" any day now. he did. not fully, but he was following us with his eyes, smiling, laughing at jokes we were saying, saying short sentences to us, and really regaining his strength. the doctors, however, felt it necessary to have another surgery just over a week after his brain surgery, to put a feeding tube into his stomache. since then, my dad is the way he was before. i know he can hear us, he smiles occasionally, he squeezes my hand, he follows my voice from each side of the room that i move and talk to him. he opens his eyes breifly, but not long. he doesnt move like he was before the second surgery they did. he sleeps constantly, they said that was due to the swelling and they increased his decadron, he is up to 36mg of it a day now. i fear that he is feeling like he is trapped inside his own body right now. he thinks he is talking, but cant get the words out to express to us. its been 2 weeks now since the feeding tube was put in, and still no real improvement in his ability to communicate verbally. the docs said it was probably due to the swelling, and they are starting him on a blood transfusion tonight to help him increase his red blood cell count. but they also told us tonight that there is growth in remaining part of the tumor. so soon. i understand how agressive his type of tumor is, but this is my dad. my dad has been thru so much, with my mom, he is a strong guy, and i know he wants to just get up, but cant. it was his decision to do the surgery, and we all supported him, he has always been a risk taker. but none of us imagined he would be like this. my question, is this normal? i just want to hear my dad's voice again. soon. ill wait forever.
thanks for listening
mandy |
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Kris
Experienced user
Joined: 23 Jul 2006
Posts: 76
Location: Geneva, Switzerland
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| Posted: Sat Sep 02, 2006 3:39 pm Post subject: Re: normal?? |
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Dear Mandy,
I'm so sorry to hear about your father.
My Mum was diagnosed with GBM in July. She/we did not opt for surgery, neither for chemo and radio, as the tumor size and location made it impossible to think of anything better than palliative care. She has been having this period since diagnosis in a generally good condition. Unfortunately she started to get weaker and weaker the past few days and now we can already see all side-effects of the high-dose steroids...
I hope your dad is doing a bit better - even if you can't hear his voice, he can maybe hear yours, so talk to him and give him all your love!
I know it will not help too much, but at least you know I'm thinking of you. God bless,
Kris |
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