Heather, I am so very sorry to hear that Dennis has gone, words are just not
enough and as everyone else has said we are all here thinking of you and wishing
you strength in the coming weeks, months and probably longer.
Much love and hugs
Linda
xxxx
--- In nzbraintumour@yahoogroups.com, Functional Training John and Sue Bowman
<bowmans@...> wrote:
>
> Our sympathy and thoughts are with you and your family at this terribly sad
time.
>
> Sue and John Bowman
>
>
>
> ----- Original Message -----
> From: Heather Linncoln
> To: nzbraintumour@yahoogroups.com
> Sent: Tuesday, September 22, 2009 10:08 PM
> Subject: [nzbraintumour] DENNIS
>
>
>
> Hi all,
>
> My incredibly brave soul mate, Dennis passed away yesterday afternoon, he
died peacefully with help from morphine, so in no pain.
>
> I feel as though i have been ripped in two, I am so devestated and am
dreading the funeral.
>
> thanks to everyone for your kind messages and support over the last fifteen
months.
>
> Heather
>
>
>
>
> ------------------------------------------------------------------------------
> From: Susan Peake <peake.susan@...>
> To: nzbraintumour@yahoogroups.com
> Sent: Sunday, 20 September, 2009 1:17:45 AM
> Subject: Re: [nzbraintumour] TUMOUR HAS WON!
>
>
> Hi Heather,
>
> I have helped care for and been with my mum during last few weeks of
her life when she had pancreatic cancer. Most doctors are good at understanding
that sometimes it is the right thing to just keep people out of pain and
comfitable. We only had 1 who thought that mum should be keept alive regardless
of how much pain etc she was in, palative care doc soon sorted that out.
>
> The best you can do is to make sure that he is not in any pain and
that the doctors understand his and your wishes.
>
> All our love, hugs and kisses.
>
> Susan
>
> --- On Thu, 17/9/09, Heather Linncoln <dmha93@yahoo. co.nz> wrote:
>
>
> From: Heather Linncoln <dmha93@yahoo. co.nz>
> Subject: Re: [nzbraintumour] TUMOUR HAS WON!
> To: nzbraintumour@ yahoogroups. com
> Received: Thursday, 17 September, 2009, 10:51 AM
>
>
>
>
>
> Hi Susan,
>
> Dennis is comfortable but still very sleepy all the time, but in the
last two days I have noticed that when he is asleep it is much harder to rouse
him, his sleeping is coming deeper!
>
> At present he is on 16mg of dex daily and I am thinking of asking
the doctors to start reducing the dex, I know what this will do but Dennis has
no quality of life now, he eats, drinks and sleeps. He no longer talks to
anyone, only answers questions with short yes or no answers.
>
> A while ago we were talking about the end and he made me promise
that I would not let him live like a vegatable and I feel I am letting him down!
>
> Has anyone been in my situation, and do doctors listen or will they
keep prolonging life??
>
> Heather
>
> ----------------------------------------------------------------------
> From: Susan Peake <peake..susan@ yahoo.com>
> To: nzbraintumour@ yahoogroups. com
> Sent: Thursday, 17 September, 2009 3:13:11 AM
> Subject: Re: [nzbraintumour] TUMOUR HAS WON!
>
>
> Hi Heather,
>
> How are you and Dennis doing? I have thought of you guys
often.
>
> Susan
>
> --- On Tue, 1/9/09, Heather Linncoln <dmha93@yahoo. co.nz>
wrote:
>
>
> From: Heather Linncoln <dmha93@yahoo. co.nz>
> Subject: [nzbraintumour] TUMOUR HAS WON!
> To: nzbraintumour@ yahoogroups. com
> Received: Tuesday, 1 September, 2009, 8:57 AM
>
>
>
> No more Surgery, No more chemo! Only a few weeks left. I am
am in much pain now its hard to breathe and I still have to go up to to the
hospital with a smille on my my face and lie to my husband every day.
>
> Social worker is trying to get Dennis into a private
hospital.
>
> It is getting so close now and I am so scared!!!!!!
>
> Heather
> GBM IV 14 months.
>
>
>
>
> --------------------------------------------------------------
> From: Susan Peake <peake...susan@ yahoo.com>
> To: nzbraintumour@ yahoogroups. com
> Sent: Thursday, 14 May, 2009 4:37:39 AM
> Subject: Re: [nzbraintumour] Re: Further debulking - for
Heather
>
>
> 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@yahoo.
co.nz> wrote:
>
>
> From: Heather Linncoln <dmha93@yahoo. co.nz>
> 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: "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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