My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Hi Grantsnana with reference to your question regarding the gliadle wafers my 15 year old daughter had them inserted at the tumour bed during her last operation in feb. The first time they had done it on children at the hospital where she is being treated. The idea is that they are placed at the bed of the tumour to reduce the mitotic activity or to stop the cells multiplying. They tried this as she had 30 sessions of radiotherapy and temozolomide and yet the tumour grew back. She has just had a further MRI and we have been told there is no progression.She didnt really have any of the major side effects. Although she did have a stroke but that was because the tumour was right on an artery and went into spasm- but she has regained a lot of the function of her left side. We felt we had no choice given the rate that the tumour returned. Hi to everyone esle I try to keep up with your amazing stories but its difficult.
Emma - just sending a hug to you and the girls too - cant believe its been a month? thats unbelievable. xx
Carrie - Hope your bearing up okay - your some lady. xx
Lorraine - you make me laugh! I bet Shanne's ears popped - did she not say "that Lesley's a right pain in the erky...she gives us grief at any given opportunity!" ..really wish I had been there tonight, i just might have been able to persuade my dad and get him along - ah well.
Sorry this is super speedy - will catch up more over the next few days - first day back at work today so mega knackered - dont know why, got absolutley no work done - drank coffee and chatted the whole day - ooer!
Emma - Sending you a big hug and thinking of you as its 4 weeks since you lsot your darling Matthew, have a fab weekend when you come up North, hope one da we can all meet somewhere, love to you and the girls.
Lesley - It was funny cause when I mentioned a few of you and said Lesley's Dad Shanne looked at me and she did say I know Lesley well and I said your lovely and she agreed so there you go thats what they are there for to nip heads and ask questions, in saying that I found Shanne very hard to speak to and understand thats when I dealt with Paula Boyle alot more in Ward 1, well 2nd June the Kirkcaldy Group are making their way to the Western so if you have a spare 30 mins why not come up and have a blether, but I totally understand if you can't with having your Dad and the little ones etc, are you back working today again or just doing part time hours?
Carrie - Hope work is going ok for you, thinking of you.
Gayle - How is things in rainy Ayrshire probably as its was a very rainy Fife yesterday? hope yur 2 M's are doing just fine, still off but no plans as such for today gonna tidy a bit in the house I think as it seems to get neglected these days with being with Mum so much.
Diane - Hope it was one of the nights for the Carers and you mananged to get a little sleep, love to you all at this time will chat to you soon.
Well folks away to jump in the shower then head along and see whats happening in the lives of M and D today I am their paper girl too so will go for papers and rolls for them shortly, will be back in touch wish I was off work all the time then I can chat to all my lovely friends more !!!
Emma, big hugs to you and the girls today thinking of you all today, a month on you are one incredible lady Mathew will be proud as he looks over you. xxx
Lorraine, maybe one of these days I will come up to your meeting when the better weather comes in we like to go out for wee runs in the car, not the first time we have landed in fife, dalgety bay, petticar bay and burnt Island who knows, certainly wont be today its rained all day and its freezing hope your mum and dad are well, glad you and Scott had a nice day yesterday. xxx
Lesley, hope work is going well, and the family are too. xxx
Carrie, Diane, Dianne, Jay, Rona, Eileen, Joan, Izzy, Debbie, Christie, Julie and everyone else thinking of you all. We just got back from asda what a horrible day it is here Martin been up since 5am again and me I am tired as usual.
Wish I had better news, but hubby has taken a turn for the worse over the past 24 hours. Our GP has been in and thinks it will only be a matter of days now. The nurse is coming back later to set up a syringe driver as he can no longer manage oral medication properly. I feel pretty scared now. I thought I could cope and I guess I will but it’s hard when reality hits.
I’ll not be posting much over the next few days as I need to concentrate on home and on him, though I will still read as I’m too much of a nosey person and many of you have come to mean a lot to me over the time I have been posting here.
Diane, I am so sorry to hear of the change in your hubby. You will be able to cope. As I'm sure you've already realised, it's amazing what strength we can find within ourselves. Just deal with each moment as it comes, only do things you are comfortable with and don't let anyone rush you into doing anything.
We will all be thinking of your family so much and I hope you can draw strength from that too. And remember that we are all here for you whenever you need us.
So very sorry to read your sad news, you and the kids and P are all in my thoughts, I hope P is comfortable and that you and that you and the kids find the strength to get through this next part of this difficult horrible journey sending you all love. xxx
Oh Diane, Im so sorry - i guess there is no way to be prepared for this is there and the fear is always present but coping methods still kick in. Myself and mum send you and your family lots of love and strength to get through this next wee while. Love Becca, Margaret - Ann and Williamxxxx
Daisycat - really didn't want to read and run. I too am very sorry to hear of P's decline. You will keep strong, because you have to, but I'll be thinking of you during this horrible period. I hope that the syringe driver means that P will now be more comfortable. Emma and Carrie are testament at the moment that we will all get through this somehow, and that at least when the time comes we can be content that our loved ones are suffering no more. It's not easy and its certainly not at all pleasant but you are there offering love and support and companionship. Love, hugs and prayers, Sally xx
Diane, Im so very sorry to hear this - I dont think anyone can ever ever be prepared, no matter how long weve been on this journey. Its so understandable to be frightened but you are a strong lady so sending you much love and strength for the coming days.
