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: nzbraintumour@yahoogroups.com [mailto:nzbraintumour@yahoogroups.com] On Behalf Of Penny Clevely
Sent: Thursday, 25 September 2008 12:02
To: nzbraintumour@yahoogroups.com
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.org.nz) there are links you may find helpful. 

Here are a few of them: 

 

www.theibta.org  International Brain Tumour Alliance

www.bta.org.au Australian Brain Tumour Support site

www.btsurvivor.com Brain Tumour Survivor site

http://www.radiologyinfo.org/index.cfm?bhcp=1 Radiology Information

http://www.brainhospice.com/index.html  Symptom timelines / Endstage landarks / Brain tumour hospice care

Penny x

 

On 25/09/2008, at 11:27 AM, Terri Killip (CMDHB) wrote:

 

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, "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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