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My husband has Glioblastoma  
Started by Mollee
30 May 2016, 5:12 PM

My husband was diagnosed June 30 2015. We have been very positive and hopeful. He had his first seizure a month ago, and then one last Tuesday. It was terrifying I thought the worst was happening, no one told me there was the possibility he could have seizures even when he is taking anti seizure medication.

My heart is breaking, he has been amazing through it all. Smiling, laughing making jokes with the nurses and Dr's. He truly is a ray of sunshine. He has told me he is not afraid to die, but said he has so much more living to do! 

I have read read other stories and admire the strength of everyone. I'm holding on for him....


 
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Reply by Carlyn
30 May 2016, 6:13 PM

Dear Mollee,

Welcome to Virtual Hospice. I'm really glad you found us and reached out.

Your husband sounds like a fun person :-) and he has strong will. It sounds like you've both had some good conversations to try to prepare. I'm so sorry you both had a fright with the seizures. Glioblastoma is a difficult thing to predict in terms of how a body will react. 

I live with unknowns due to a rare disorder, so can relate to your words a lot. It is scary and can derail coping and decision making when unexpected things happen. It's ok to be surprised and upset is what I'm trying to say. 

Keep holding on for him. Sometimes things unexpected may happen. We're here for you any time to help support you both through it.  Sending virtual (hug)

Carlyn
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Reply by Mollee
31 May 2016, 9:53 PM

Dear Carlyn

Thank you so much for your kind words.
I appreciate the encouragement.
It is so hard not to be able to make everything better, 
back to normal. 

I wish you all the best in your journey and hope that 
you have support too.

Hugs,
Mollee 
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Reply by Carlyn
06 Jun 2016, 1:05 AM

Hi Mollee, thank you :-) I'm all good here. 

Wanted to check in and let you know i'm thinking of you both. Sending good thoughts. 

Carlyn 
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Reply by KathCull_admin
12 Jun 2016, 4:16 AM

Hi 
Like Carlyn I welcome you to our community Mollee. I am glad you have found reading the other threads and post helpful.

Your husband does sound like a remarkable man. How long have you been married? My husband had a great sense of humor as well - and Henry, like your husband was at peace with what happend in the last weeks of his life. That gave us the opportunity to talk, laugh and be thankful.

Do you have others who support you Mollee?

Katherine 
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Reply by JennJilks
12 Jun 2016, 2:25 PM

My late father had a brain tumour, Mollee, he did not have seizures, however. His was in the area of language. 
Unsolicited advice: simply enjoy each day, hope for the best, and don't worry about tomorrow.
If you can change the things you hope for, you will be able to laugh. I looked for the diamonds each day, as someone suggested to me. 
Your husband's sense of humour is important, and you'll find great joy i the laughter in this poignant time.
all the best,
Jennifer
 
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Reply by Mollee
12 Jun 2016, 2:37 PM

Good Morning, 

Thank you both for reaching out. This past week has been very challenging, walking has been a big issue, especially for a man that has been very independent. He experienced a small seizure last night and it scared both of us. 

I am making a arrangements for us to enter a hospice near family. Even though this is very heartbreaking, I know it's the best for him. It will be wonderful to have him converse with others. My mom has been helping us out and I am going to miss her terribly when she leaves on Tuesday. I will have homecare come and help me until our kids come next week-end to help us with the trip to the hospice. 

Hoping all is well with both of you, thanks for your support.
Mollee 
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Reply by JennJilks
12 Jun 2016, 3:08 PM

That is a wonderful place for you both. You'll be surrounded by professionals, and both of you will be kept comfortable. Good for you. 
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Reply by KathCull_admin
26 Jun 2016, 1:45 AM

Just wondering how the past week has been Mollee. I hope the move for your husband, although difficult, has been good for you too.  Drop by when you have the time and energy.

Take care
Katherine 
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Reply by Mollee
26 Jun 2016, 3:25 PM

We arrived at our hospice last Tuesday morning. It was a 12 hour drive, because we wanted to go back to where family is, the hospice and staff are beyond words. I have never felt such care and compassion in my entire life. He is on his final journey and the kids and I have been with him all night. The setting and accommodations for all of us has made this transition a little easier to bear....thank you for staying in touch.
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