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 last month
after a hearty and very courageous battle. She was just 50 when she was first
diagnosed. She had her first debulking one week after diagnoses which took her
3 months to recover from, one year later she had another debulking as the tumor
rapidly returned dispite chemo and raditation. After the second debulking Mum
said no to anymore chemo or radiation. I thank God everyday she so stayed
strong and was given an 18 month relapse. During this time she many ups and
downs as expected but she always remained loving and optimistic (if somewhat
forgetful and a bit wasted) Looking back on this time it was definately hard,
especially for my father who had to give up work and become mums fulltime
caregiver. But it also drew our family back together and created such strong
bonds... and for that im truely grateful. In regards to the finacials... as
terrible as it is to think of, does your husband have life insurance? If so are
you able to check to see if he is entitled to an early payout for terminal
illness? My mother was able to do this an it certainly helped over the last two
years and took away much of their burden and enabled them to focus on fun family
things to do. Our family was also struck by the lack of support and information
available through Waikato Hopital for patients and staff. If there is anything
i could help with please dont hesitate to ask

Kind regards

Natasha Ormond

--- 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
>