Having problems with message search?
Unfortunately, Russell had been unwell for
most of our married life with different health problems. The symptoms he did
have were very similar to those problems. He had chronic sinusitis and
allergies and often had frontal headaches and felt tired and generally unwell.
He said that the first unusual (for him) symptom
was slight pain behind his right ear, which he attributed to tooth problems.
Went to the dentist, got tooth fixed, then pain transferred to behind left ear.
Nothing too unbearable, more just discomfort and a strange sensation. Looking
back in his diary, though, I find that his sleep/wake patterns were very
disturbed for about 4 months prior to diagnosis. He used to wake up wide awake
at 2 or 3 in the morning and not be able to get back to sleep.
He had very mild personality changes that
I attributed to him being unwell with a sinus or ear infection, and being on
antibiotics. He had been to our GP three times in the month or so before
diagnosis, who told him it was a sinus infection and had given him 3 different
courses of antibiotics.
So no significant symptoms that were
really out of the ordinary for him with his pre-existing health problems, and
no neurological symptoms at all until the day before his diagnosis when he had
some focal seizure activity affecting his limbs.
What I have found surprising, talking to
colleagues at work, is just how many of their parents or other family members
have succumbed to a brain tumour, and 3 out of the 4 were GBM.
Who has up to date information about the
incidence of GBM in NZ? I was told by one doctor at Middlemore that Russell was
the third person from South Auckland that she knew about to be diagnosed with
GBM this year.
Terri
From:
Sent: Thursday, 25 September 2008
12:02
To:
Subject: Re: [nzbraintumour] Re:
hello
Hi there
my husband had a major seizure that knocked him out, That was the first
we knew of his GBM. No headaches, no dizzy spells, nothing.
At first the hospital wouldn't scan him. Then two days later he had
another seizure and from there the nightmare began. He survived for 17 months.
Our boys were 5 and 7 when he got ill.
What symptoms did Russell have before his CT ?
Unfortunately it isn't that unusual for people to have
undiagnosed tumours.
The symptoms vary but common ones are:
Tiredness
Nausea - Often misdiagnosed as a tummy bug
Changes in mood - this is often misdiagnosed as depression
Seizures - often not taken seriously by medical staff unless they last
for more than 3 - 5 min
Headaches - not as common as you would think. My husband never really
had a headache until one month before his death.
I have spoken with many people who struggled with one or more of the
symptoms above and visited their GP / ER only to be told there was nothing
wrong. Then, months later, found out that they had a brain tumour. By
then it was often too late for any treatment give them any chance of
extended survival.
On my husbands web site (www.headstart.
Here are a few of them:
www.theibta.
www.bta.org.
www.btsurvivor.
http://www.radiolog
http://www.brainhos
Penny x
On 25/09/2008, at 11:27 AM,
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
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:
Sent: Wednesday, 24 September 2008 16:10
To:
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@
>
> 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.
>
|
This e-mail message and any accompanying
attachments may contain information that is confidential and subject to legal
privilege. If you are not the intended recipient, do not read, use,
disseminate, distribute or copy this message or attachments. If you have
received this message in error, please notify the sender immediately and
delete this message. |
| This e-mail message and any accompanying attachments may contain information that is confidential and subject to legal privilege. If you are not the intended recipient, do not read, use, disseminate, distribute or copy this message or attachments. If you have received this message in error, please notify the sender immediately and delete this message. |
Offline 
Send Email