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Hi all you wonderful people,
I think of you all often and hope that in-between the not so good times you are enjoying your family and each other.
Mark and Liz, debulking gave Don an extra 18 months of quality time. It's a big decision for you to make. Sending you lots of prayers and positive thoughts to help you both. Technology has improved and we can only be guided by the experts. If I remember, Andrew Law used the term "Stealth" Which was a term used to deal with debulking of tumours in difficult places. Don's was inoperable because of the infiltrating nature of the beast..
Linda and Kath, pleased to hear your dear husbands are as well as can be expected. It's such a different life for me after being so "hands on" for so long. I don't think I realised how my life was so consumed in "the braintumour world". I learnt so much about people, especially from our loved ones who suffered from this horrible disease and also you caregivers who are all so brave and supportive of them and me.
I know the difficulties you girls who have lost partners are facing. Going it alone, so to speak. I am fortunate in some ways, I only have myself to consider and have a very supportive family and grandchildren. The comforting part is Don is still around. On a lighter note, I wish he could help with a bit of maintenance on this old Villa!!
To Chris and Lynda, you are amazing!! All the research and info you are passing on to the group. I always said if it was the reverse situation with Don and I, don't know how he would cope!! You are doing a great job Chris.
To you girls who have found happiness, they say, these people have been sent to you for a reason. Look after yourselves and your children. You certainly deserve a happy second half of your lives!!
Lots of love to you all, including Penny, Becs, Nina and Sharyn, who is off to Florida very soon. Good Luck with your new life Sharyn.
Cathy xx
From: Kathryn Mills
Sent: Saturday, September 27, 2008 12:00 PMSubject: Re: [nzbraintumour] Hi from Gisborne
--- On Fri, 9/26/08, methompson <methompson@xtra.co.nz> wrote:From: methompson <methompson@xtra.co.nz>
Subject: [nzbraintumour] Hi from Gisborne
To: nzbraintumour@yahoogroups. com
Date: Friday, September 26, 2008, 11:18 AM
Hi EveryoneMark and Liz here...Mark with his AAIII tumour since Feb 1994...But now looks like he is heading into round 3 of his battle/our battle - the latest scan shows the tumour has grown back - with significant swelling as well.So that's pretty tough - but we were pretty much expecting this. We will see a visiting oncologist (from Palm Nth) on the 1st of October - and start to organise what happens next...Mark is also under Dr Muthu who visits from Waikato Hospital - a neurosurgeon - and he will probably want to operate to do a bit of debulking.We are not sure if, in view of the dangers of debulking, whether it would be worth operating at all! After Mark's last surgery and biopsy/debulking in Auckland 3 years ago, he had a cerebral haemorrhage and was really ill and incapacitated.So maybe we will ask to forego surgery and go straight to chemo. We are thinking of trying BCNU chemo again - as it had a pretty good effect last time with 2 1/2 years remission... or use Temodal - we can sort-of afford paying for it ourselves - as Mark's life insurance has now been paid out (after the recurrance 3 years ago) - though losing some of it in finance company collapses is not entirely helpful!!!Mark is having to take 3000mg of Epilim as well as quite a bit of Dilantin because of increasing numbness and lack of awareness of where his right arm is. He is having a bit of trouble with conversations and reading and a lot of trouble writing...thoough he is still keeping fit - ran his favourite 18 km track the other day - over the nearby hills - though he admitted it was rather a slow jog!!!His white cell count has been a bit low too - maybe too low to manage taking many rounds of chemo - so that might be a problem. His white cells (esp neutrophils) are low because of bone marrow suppresion caused by high amounts of Epilim and Dilantin - but he needs to keep taking these!So it might be a bit of a rocky road ahead...but we are (mostly) staying positive and I continue to be amazed at how well Mark has done in spite of his illness. Its great to know you guys are with us through all of this too...Love you all heapsLiz and Mark
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