Hi Terri,

Welcome to the group and I am terribly sorry for your loss. My husband Matt
passed away in May of 2006 from what originally was a Grade III astrocytoma
but recurred as a GBM. We were lucky enough to have 3 and a half years to
prepare for the inevitable - although how you prepare for that I have no
idea. Matt's only real symptom was blinding headaches. He never had any
seizures before or after his two surgeries. His eventual decline was very
rapid, in the space of about 2 weeks he went from walking, laughing, and
eating (lots!) to being unconscious for most of the time and being unaware
of where he was or even who I was. Because he showed no signs other than
the headaches, I can see how if his tumour had been inoperable how quickly
the disease could have taken hold.

I have two children aged 6 and 8 and to become a solo mother to them as well
as trying to deal with the loss of our beloved Daddy and husband was huge.
I like you believed that we were just an "ordinary" family and that things
like this don't happen to us. It certainly seems to me that there are a lot
of bad things happening to good people.

The grief I know you are feeling at the moment is so raw and the lack of
understanding and knowledge surrounding this insidious disease must be so
terribly frustrating. For most of us we have had time to seek out
information, drill the doctors and share our thoughts and questions on this
forum. We were also lucky in that we had a brain tumour support group at
the cancer society in Wellington for a while, although I understand that
that has now ceased due to staff movements.

Unfortunately my world was rocked again earlier this year when my son was
diagnosed with an extremely rare form of cancer in his sinus cavity. I
think the biggest question we ask ourselves is "why?"

To everyone, we are doing well, Liam has one more surgery coming up to lower
the titanium plate which is acting as his orbital floor, but is otherwise
doing really really well. The poor little buggar fell on the tramp
yesterday and put his tooth through his bottom lip which bled like a
bastard! After we got rid of the blood he calmed down a bit, but kept
asking why all the bad stuff happens to him. What can you say! Never the
less after much groaning I got him to the Doctors - anything to do with his
head I get checked, and of course he hates anything to do with Doctors!
Apart from a very sore and swollen face he will be fine. Boys!

That's enough dribble from me for the moment I think, Terri my thoughts are
with you and any questions you have do ask them here, between us all someone
is bound to be able to answer them.

Take care everyone
Becs




-----Original Message-----
From: nzbraintumour@yahoogroups.com [mailto:nzbraintumour@yahoogroups.com]
On Behalf Of Terri Killip (CMDHB)
Sent: Thursday, 25 September 2008 11:28 a.m.
To: nzbraintumour@yahoogroups.com
Subject: RE: [nzbraintumour] Re: hello

Hi, thank you for replying, especially as it was recently the
anniversary of your husband's death. I have four children. My oldest is
24 and living in Wellington. The three at home, who were closely
involved in their father's illness and death are 17, 16 and 14. In fact,
our 16 year old had his birthday on 12 August when his father was on
leave from Middlemore Hospital (we live in South Auckland), waiting to
go to Auckland Hospital neurosurgery. So instead of having a birthday
party in hospital, we were able to spend that evening all together at
home.

Russell's tumour was inoperable when it was diagnosed, and we waited
over two weeks for a biopsy to be taken. We never got to the radiation
and chemotherapy stage as he died exactly one week after the biopsy,
while we were still waiting for the histology results to come through.

There is very little information that I can find that answers my
questions, or speaks to my story which is essentially a surprise
diagnosis, followed by a short period of "wellness" thanks to the
dexamethasone, then a very rapid deterioration and death. As someone
said to me, "you have been through a whirlwind", and that is what it
felt like.

I was talking to a colleague at work yesterday who lost her brother to
GBM 4 years ago, and that was quite helpful, but mostly I feel so
isolated as nobody else I know has lost a partner to a brain tumour. I
told someone when Russell was first diagnosed, we don't have rare,
aggressive, malignant brain tumours in our family. They are

something that happens to other people. We are an ordinary family.
However, that didn't turn out to be the case.

How very hard it must have been for you with small children. I was able
to manage the hospital and hospice stays because mine were teenagers and
able to cope at home with meals etc.



Terri

________________________________

From: nzbraintumour@yahoogroups.com
[mailto:nzbraintumour@yahoogroups.com] On Behalf Of nina.johnston
Sent: Wednesday, 24 September 2008 16:10
To: nzbraintumour@yahoogroups.com
Subject: [nzbraintumour] Re: hello



Hi Terri, what a terrible shock for you. I am so sorry for your
loss. You will find this group a tower of strength. There are
brain tumor survivors in the group that can answer many of your
questions, unfortunately there are widows in this group as well that
may help you get through the next stage. My husband, Aaron, was
diagnosed in April 06 with a high grade GBM and passed away
September 06. At time of diagnosis our children were 6 and 8mths
old. Do you have any children? Which area do you live in? Please
use this group for all your questions and frustrations, its what
it's here for.

How is everyone else? I think of you all heaps. The kids and I are
fine. Jack nearly 9 and Fletch 3 now. We got through Fathers Day
and Aaron's anniversary with quite a few tears (a few mental moments
for me), and quite a few wines...... and to throw another
anniversary into the mix it was my mums (11 years) yesterday! The
joys of September! It's strange to be happy and sad at the same
time, because even though I have Clint in my life and we are very
happy, I still cry on a regular basis for the future that Aaron, the
kids and I were going to have..... and for the comfort I no longer
have with my mum (nothing like a mums cuddle to make things ok!).
The curve balls life throws at you a! Anyway take care everyone and
be strong, its great to hear from you all. Lots of love
NINA

--- In nzbraintumour@yahoogroups.com
<mailto:nzbraintumour%40yahoogroups.com> , "Terri" <TKillip@...> wrote:
>
> I have just joined this group and should introduce myself. My name
is
> Terri. I hope that I don't upset anyone with what i will write. My
> husband, Russell, aged 46,passed away on 1 Sept from glioblastoma
> multiforme. He was diagnosed on 6 August, so it was slightly less
than
> four weeks from diagnosis to his death. He was essentially
asymptomatic
> until the day before his CT scan. Nothing that i read on the
internet,
> and nothing that was said by the neurosurgery team prepared me for
his
> very rapid deterioration and I am still seeking information about
GBM
> and its manifestations.
>

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