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
September 06. It was the most horrible, mind boggling, emotionally and
physically exhausting time of our lives. I do understand where you are coming
from as 5 days after surgery my husband suffered respitory arrest which left him
with memory loss and complete vision loss, personality changes, you name it the
list goes on.... our children were 8mths old and 6½ at the time. So for nearly 6
months we, like you, had to find ways to make ends meet and try try try and make
sense of the crazy NZ WINZ system which wouldn't pay me as his full time carer
but would pay ANYBODY else, bloody criminal! Hence i was very pissed off and
frustrated. We got friends to help out so I could pop out for a couple of hours
(Aaron could not be left alone), and they could get paid but they were not
capable of helping him if his bladder went etc. My GP bought it to my attention
that Aaron's life insurance could be paid out if it is a terminal illness so I
made the hard decision to contact our insurer. I felt totally sick about it and
it felt wrong on so many levels.... but it got us through the financial burden
of no income (we owned our own business and had to close it) and allowed us to
focus on everyday life. Linda you will have to do whatever it takes. Let as
many family and friends help you and your husband, never say no to help (I did
at first but then I thought bugger it... I need it). There will always be one
of us at the end of the computer.... I did my fair share of swearing through
this group and venting alot of anger and frustration, that was my lifesaver.
Take care and big hugs to your family.

--- In nzbraintumour@yahoogroups.com, "thefowlers97" <thefowlers97@...> wrote:
>
> 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
>