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Reply | Forward Message #1613 of 1806 |
Re: [nzbraintumour] New to the group

Hi Linda,
 
We also have been where you are now. My hubby was also hit by a GBM at the begining of this year. We like you have kids (10, 13, 15). Before and soon after Stefans Surgery I was told that he wouldn't be able to be left on his own again as his memory, cordination and balance was terrible and that I would have to give up my work. He has however proved the docs wrong as after 1 month I was able to go back to work 2 days a week and now am back to my ususal 4 days a week. Stef is also a builder and was told he would never be capable of using power tools, but for the last 2 months has been able to do work on our house and my sisters. Often he can only do 3 or 4 hours at a time, but given the earlier prognoses he has far better than we were led to believe he would ever be. So I guess what I am saying is dont give up hope yes it will be tough and while Stef is not the person he used to be and does have to be constantly reminded about what he needs to do and we can have to same conversations 2 or 3 times before it sinks in things will slowly get better.
 
As others have said go to WINZs and ask what benefits you are entiled to (we get invalids, accomidation supplements, family tax credit and disabilty allowance) as if you ask they have to tell you what you can apply for.
 
Good luck
Susan

--- On Mon, 1/6/09, thefowlers97 <thefowlers97@...> wrote:

From: thefowlers97 <thefowlers97@...>
Subject: [nzbraintumour] New to the group
To: nzbraintumour@yahoogroups.com
Received: Monday, 1 June, 2009, 11:16 AM

Hi there,
I found this group through Penny's website and she emailed me the link to join. I have been reading through the posts hoping to make some sense of the position we find ourselves in since my husband's supposedly benign frontal lobe tumour turned out to be the hideous glioblastoma multiforme. He had his surgery 4 weeks ago at Waikato, and it was much more invasive and difficult than they were expecting. Because of how major the tumour was there were complications, such as stroke symptoms and quite serious mental/cognitive impairment. He has taken a long time to come right, physically he is doing better day by day, but he only really started walking about a week ago, and that is still precarious as his balance is not good and he struggles with it - he is using a frame successfully right now but can only do short spells at a time. Cognitively he is there but not, if you know what I mean....apparently this is a hallmark of frontal lobe brain injury, emotionally things arent firing and impulsivity is constant. There are also major issues with continence, that hasn't worked itself out yet either.
We are meeting with the oncologist again on Wednesday but as you will no doubt know, treatment is palliative only. They have had to delay the chemo and radiation because of my husband's slow recovery- he needs to be in a place to withstand the treatment first.
I am having trouble structuring this post, I still can't believe we are living this nightmare that is our lives right now.
I have been struck by how little support there has been via the hospital system and how little I feel I can do at this point. We didnt have income protection insurance so we have serious financial concerns right now too. I feel like there are no silver linings anywhere right now and am struggling to find an optimistic slant on anything. The fact that my husband might not recover mentally in the short time he may have left is another blow- I feel like I have lost so much of him already. We have two young kids (nearly 5 and nearly 13) and I am feeling incredibly sad about what they are having to deal with too, it all just sux really!!!!!!
Sorry this is such a negative post, I have had a bad day today and should probably have turned the computer off and tried to get some sleep, only sleep often doesn't come!!!!
Any ideas or advice would be welcome
Linda


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Wed Jun 3, 2009 8:04 am

peake.susan
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Message #1613 of 1806 |
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Hi there, I found this group through Penny's website and she emailed me the link to join. I have been reading through the posts hoping to make some sense of...
thefowlers97
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Jun 1, 2009
11:17 am

Dear Linda All I am going to say is that I have stood in your shoes and I have walked your path. Last year. Date of diagnosis 6/8/08, date of my husbands death...
Terri
terrikillip
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Jun 1, 2009
7:52 pm

Hi Linda, I feel very sorry for you. My son (16yr old) was diagnosed earlier this year with pilocytic astrocytoma with leptomeningeal spread.  It is a low...
lauren atkins
laurenanz
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Jun 1, 2009
10:41 pm

Hi Linda, I am so very sorry you have had to join our club. My husband Dennis has just had his 2nd crainiotomy two weeks ago within 11 months (GBM 4)....
Heather Linncoln
dmha93
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Jun 2, 2009
1:33 am

Hi Linda My family also found ourselves in the same situation 2 1/2 years ago when my mother - Carol was diagnosed with gm... Unfortunately she passed away...
hine2go
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Jun 2, 2009
3:59 am

Hi Linda My family also found ourselves in the same situation 2 1/2 years ago when my mother - Carol was diagnosed with gm... Unfortunately she passed away...
hine2go
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Jun 2, 2009
4:01 am

Hi Linda, my thoughts are with you and your family at this really tough time. My husband was diagnosed April 06 with a high grade GBM and passed away...
nina.johnston
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Jun 2, 2009
7:01 am

Hi Linda,   We also have been where you are now. My hubby was also hit by a GBM at the begining of this year. We like you have kids (10, 13, 15). Before and...
Susan Peake
peake.susan
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Jun 3, 2009
8:05 am
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