Hi Heather, my husband sailed through his first resection, but 11 months later,
after having completed radiation, it showed residual tumour, so he had further
debulking.

This time they had to operate alot closer to the speech centre, he had a seizure
post op which really put a spanner in the works.
It took him almost 24 hrs to wake from the anaesthetic, and he had issues with
speech and movement. 2 days later he made a dramatic improvement, and Auckland
Hospital discharged him a day later.
I was really angry about this, as I had asked them and asked them to consult
with me first before informing DH he he could leave hospital.
DH hates hopsital with a passion , and will say or do anything to be discharged.
I could see he was no way near to come him compared to the first time. It took
him a good month or more to bounce back, by which time he then started chemo.

Point of my post, is to let you know, and not to get your hopes up that your DH
will recover exactly the same as the first surgery BUT then I have heard of some
BT patients who have had problems with their first surgeries but not from
subsequent surgeries.
It really is one big guessing game.

Personally I have not had to deal with WINZ as my DH has been fortunate to have
Income Protection Insurance. He has not worked for nearly 3 years. But that's a
whole other story :-)

I do urge you though to check into any Medical/Life/Health policies that you
have. Check all the fine print as there may be something in there that could
qualify you to claim, or make an early claim against.
Please also check with the Brain Injury Foundation here in Auckland, to find out
what entitlements you are due ie home help or respite care

Linda




--- In nzbraintumour@yahoogroups.com, Susan Peake <peake.susan@...> wrote:
>
> Hi Heather,
>  
> If Dennis is not able to work and you need to look after him then with a
medical cert from docs he can go onto a invalids benefit and you will just have
to push the fact that he needs care etc. This is what I had to do when Stef was
first diagnosed as we were told he wouldnt be able to return to his job
(industrial abseiler) and that because of the damage to his short term memory he
may have to be constantly supervised. Luckly he dosent need to be watched 24/7!
WINZs can be very hard to deal with but stick with it. Hope all goes well for
both of you.
>  
> Susan
>
> --- On Thu, 14/5/09, Heather Linncoln <dmha93@...> wrote:
>
>
> From: Heather Linncoln <dmha93@...>
> Subject: Re: [nzbraintumour] Re: Further debulking - for Heather
> To: nzbraintumour@yahoogroups.com
> Received: Thursday, 14 May, 2009, 9:45 AM
>
>
>
>
>
>
>
>
>
>
> Hi Liz,
>  
> Dennis op was supposed to be tomorrow, but an emergency has come in and now we
are told it will be next Thursday. The hospital have promised us there will not
be any further delays.
>  
> We have just seen the latest MRI scan and I am sure the tumour is bigger then
last time! I have noticed a deterioration in Dennis in the last few days, he is
moving more slowly and he is responding to conversations more slowly as well,
and memory is bad!
>  
> I have decided to start my leave this weekend as I do not want him to be on is
own, until he is re admitted to hospital (AKL City). I want to quit work to
become his full time carer, and will be trying to get help from WINS!!
> The surgeons are happy to perform a second debulking, which apparently is
rare, because he is still quite fit.
>  
> One of the biggest frustrations we have, is trying to tell his family how bad
the situation is, but the response is "there is always medical breakthroughs out
there"
>  
> I will be keeping a very close eye on any change in symptoms.
>  
> Love
> Heather
>  
> PS. Has anyone had a Glidal wafer, because I have googled info, but his
specialist doesn't really seem interested in talking about it?
>  
>  
>
>
>
> From: "methompson@ xtra.co.nz" <methompson@xtra. co.nz>
> To: nzbraintumour@ yahoogroups. com
> Sent: Thursday, 14 May, 2009 12:20:30 AM
> Subject: [nzbraintumour] Re: Further debulking - for Heather
>
>
>
>
> Hi Heather
>  
> Mark has had two surgeries for debulking/biopsies. The first was in November
1994, and the 2nd was in July 2005, so he had had  11 years of reasonable health
in-between. Keeping as fit as possible is quite important, but as you say, not
always possible. But what is more important is after the procedure, not to
expect a rapid recovery - recovery will take place, but patience is very
important!!! . Mark did expect to recover quickly and it didn't happen...and we
had our teenagers with us in Auckland and were pretty keen to get home to
Gisborne. He had a few days in the ward - was fairly wobbly on his legs at
first, then we had one night all together in the motel at Domain Lodge (after he
had had a CT scan to check everything was ok post-operatively) .  Mark seemed
fine until when the taxi was outside about to take us to the airport, he then
started feeling very unwell - terribly headachy. At that point we should have
cancelled our flights and phoned the
> hospital. We didn't and continued home on the one hour flight. Mark was
fairly messed up by the time we got home...and his recovery seemed quite
set-back by this. Several months later, a scan showed he had had a haemorrhage!
Obviously we had pushed things along too much...and we will know next time not
to continue with our plans if things aren't going well. Im sure you will be more
sensible than we were, and everything will be fine with Dennis's op.
> Whereabouts are you?
> Please let us know when the operation is...and we will be thinking of you.
>  
> Much love
>  
> Liz and Mark
>  
> PS Thank you so much Chris and Susan - looks like we have not had very good
information  and we will be following this up tomorrow.
>  
>
> ----- Original Message -----
> From: nzbraintumour@ yahoogroups. com
> To: nzbraintumour@ yahoogroups. com
> Sent: Tuesday, May 12, 2009 10:05 PM
> Subject: [nzbraintumour] Digest Number 504
>
>
>
> NZ Brain Tumour Support
>
> Messages In This Digest (1 Message)
>
>
> 1a.
> Re: Mothers Day and PETs From: Heather Linncoln
> View All Topics | Create New Topic
> Message
>
>
> 1a.
>
> Re: Mothers Day and PETs
> Posted by: "Heather Linncoln" dmha93@yahoo. co.nz   dmha93
> Mon May 11, 2009 3:25 am (PDT)
>
>
> Hi liz,
>
> My husband is due to see his Neurosurgeon this week to discuss a 2nd
debulking. He had his first surgery last June and then had Radiotherapy and
Temodal. It looks like the tumour has come back within 12 weeks despite
> Dennis being on Temodal for the last six months. I thought this was supposed
to be a great drug?!
>
> He is now back on 12mg of Dexamethazone and the Neuro registrars are telling
us this surgery will only buy him more time.
>
> Can any one give us any advise on second debulking? Dennis was so physically
fit before the last surgery he bounced back really quickly, but after nearly a
year of all the drugs and the physical & mental changes I have seen, I am
feeling very anxious.
>
> Heather & Dennis
>
> ____________ _________ _________ __
> From: "methompson@xtra. co.nz" <methompson@xtra. co.nz>
> To: nzbraintumour@ yahoogroups. com
> Sent: Monday, 11 May, 2009 2:46:29 AM
> Subject: [nzbraintumour] Mothers Day and PETs
>
> Hi Everyone
>  
> Thanks Linda for the nice Mothers Day wishes. Its great that Bruce had a good
time in Australia, and that all went well with his trip.
>  
> Mark managed to run the Rotorua Marathon last weekend (his 3rd one in 3
years).in spite of the fact his tumour is still growing!!! But his main problem
was that he had serious problems with the iliotibial ligament in his thigh from
about 4 weeks before the marathon. It was extremely painful for him to train in
the last 4 weeks, so he only had physio - which didnt help with the ligament
much at all... then his knees seemed to pack up...so he probably shouldn't have
tried to run the marathon at all - Nevertheless he did - although he had to walk
for 26 km of it with very painful legs - St Johns, his wife (me!) and other
helpful people wanted to pull him off the course - but he didn't want to stop -
so finally completed it in 6.45 hours !!! Still he beat 26 people - including
some his own age or younger!!! And, amazingly, he could still walk afterwards
and isn't crippled for life...in fact this week his injuries have finally
started to get better - and he
> was able to actually go for a short run yesterday!!! He got a nice finishers
medal and T-shirt - so hes very proud of himself!!!
>  
> Since Marks tumour seems to be still growing, according to the MRI scan, in
spite of 3 rounds of CCNU (November, Dec, and Jan) and two rounds of Temodal
(Feb and March), it is all getting quite difficult now. He is taking 4mg
Dexamethasone, as well as 3 different anti-epileptics. Lamotrigine is the new
one that seems to be doing the best job, so now we are able to reduce the Epilim
and Dilantin. The plan is to try Carboplatin chemo from next week. The
oncologists think the tumour has become chemo-resistant, so there is only a slim
chance that Carboplatin will work. But there seem to be no other options in NZ.
The neurosurgeon (Muthu from Waikato) has proposed the possibility of  doing
 some helpful debulking with "Awake" surgery if we would like to try that later
in the year.
>  
> Meantime the other recommendation we have had from a locum American
radiologist (who read Mark's last MRI scan here in Gisborne) is that Mark should
really have a PET scan to make sure it is tumour regrowth not scar tissue. The
oncologist says there is no possibility of PETs in NZ using isotopes that
actually penetrate the brain. Wakefield Hospital in Wellington only have glucose
isotopes which are no good for reaching brain tumours - so that is the end of
that discussion. Besides, since Marks surgery and radiotherapy was over 14 years
ago, scar tissue shouldn't be growing now. However we wonder whether it could be
scar tissue from 3 years ago when he had his last biopsy/debulking? The
neurosurgeon isn't interested in PETs either, he would just like to do surgery
to see whats there.
>  
> We will keep you updated, but would really appreciate any comments/advice,
>  
> Mark and Liz
>
>
>
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