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.
Jay - still thinking of you and to be honest a little guilty that I didnt realise that things had got so bad - so for that I am sorry. xxxxxx
Feel a little bad about posting as it is nothing compared to what Jay is going through but i am going to since a few of you have been texting me!
news from our end is a little concerning - matthew is on this drugs trial at the marsden and was doing so well - scan 3 weeks ago showed that tumour has reduced slightly - first bit of good news in a year - but Sat he had the headache from hell and sun he was talking jibberish sometimes - he knew what he meant and it took 4 attemps to get it right so we knew. he then started seeing things out of the corner of his right eye (has tumour front left temporal lobe) all different things at different times of the day - animals, people, balls you name it he has seen them. The hospital upped his dex to 8mg on monday and upped to 12mg on tuesday but it hasnt made any difference so they have reduced it to 6mg again today - we were at marsden for saftey check like we are every week due to the trial - they were fantastic as usual and were concerened he had a bleed to sent him for emergency CT scan which came back clear as far as bleed is concerened - so MRI is next thurs - and they feel it is either the tumour regrowing or his brain sending strange signals - i think i know what my money is on - although dont want to get too doom and gloom until they tell us but since nothing else has stopped it why should it now? After the high 2 weeks ago although I did keep telling myself early days I feel completely flat and empty gone into cant be bothered mode tonight - why is it always 1 step forward and 2 back?
Sorry to have a moan - its unlike me - I like to be the positive one for everyone else but he wont talk about it tonight and his mum is on anti depressants (he also lost his dad 3 years ago suddenly to lung cancer) so i cant blame her but she is unemotional and takes it all, so it seems in her stride. God this is a post that is waffle!!!
Anyway off to be nursey now and sort out his meds and dinner we havent eaten all day! - also need a large glass of wine!
Julie hope your ok not heard from you for a couple of days? x
Love to you all -and thinking of those who are having a really rough time at the moment Emma xxxxxxxxxx
hi Emma hope you enjoy your glass of wine. I cheated with dinner today and got a chippy, some days you just run out of time! sorry to hear of your worries about Matthew. I guess there's nothing else you can do at the moment but await the mRI - its good that there was nothing obvious on the CT. I really hope its not the tumour growing - it seems unlikely if it was actually shrinking 2 weeks ago, but we should all know not to try to predict things with GBM, shouldn't we! it's hard going isn't it.
Jay-thinking of you ,hoping you are coping in these difficult times,sending you warm hugs of support xxx
Emma-Sorry to hera about Matthew,I always fear the worse but try not too,maybe its not the blooming tumour as Diane says seems a little strange after hes had such good results.I know how hard it is but try and stay positive ,hopeful of good news for you and the family xxx
To all you lovely ladies,wishing each and everyone reading this post peace and love for all GBM sufferers and their familiesxxxxx Debbie xxxxx
Jay I dont think we have spoken before but my heart goes out to you, I will be saying a little prayer for you tonight xxxx
Emma how is Matthew and mores to the point how are you. I have read your post keep thinking positive babe like you always have done, I will speak to you soon xxxxx
Gayle hope you and Martin have had a fantastic time at theatre, I have been thinking of you both tonight xxxxx
Well, we’re starting to get into a routine now. We’ve wonderful carers coming in 4 times a day. They are so good with B and it gives me some time to get on with things. He is also sleeping all night (apart from last night where we were having a bizarre conversation – I’ve forgotten what it was about – at about 3.00 am). It’s so much nicer now I don’t have to leave him every night in the hospice.
Jay – Still thinking and sending you a big hug.
Izzy – Ditto.
Karen – also.
Debbie – I’ve finally seen your wedding picture. It’s lovely. Your boys look so smart.
Emma – you’re allowed to be down sometimes. You can’t be upbeat all of the time. It’s so hard when you a propping up everyone else and you can’t talk to the one person that you would like to discuss this with. Fingers crossed that this is just a blip and things will settle down soon. Matthew is such a fighter. I just wondered if it could be the tumour swelling due to the drugs (like when they have radio and chemotherapy) rather than regrowing. Did the doctors suggest that that could happen?
Lesley – thinking of you and your dad.
Gayle – how was the show. Did Martin enjoy it?
Joan – hope you are still feeling the benefits of you break away. Do you get a chance to paint at all now?
Rona - hope you’re having a good time with your dad. How long are you over for?
Julie – good to hear from you again and that everything is ok.
CH – hope everything is ok with you and B.
Diane – hope you enjoyed your fish and chips. Sometimes they just hit the spot.
Carole – Hope things are going ok with you (or as well as they can be). Did you get the job?
Lisa – Hope your dad’s still enjoying his icecream. You’ll have to buy shares in Ben and Jerry’s.
Off to bed now. I’ve almost finished my book and it’s getting very exciting.
Thank you for all your messages and support... Carrie... I am working towards that call promise... what time is best for you?
I am very sad but am managing, I am busy preparing Jon's celebration of his life for Wed, I have so much to say but am not ready yet.... I will be reading and thinking of you lots and will write after Wednesday.
I will always love him and he will always be with me.... one more gift for him and then I can fall apart for a bit... though it does come in waves
will you still let me write here... I know he has gone but I hope I can be there for you too...
Just a quick post we only got home half an hour ago theatre was great we both enjoyed it very much, but shattered now, ready for bed.
Jay, thinking of you and your family at this sad time, love to you all. xx
Emma, sorry to hear Mathew is still experiencing problems, with the treatment it will be just reaction with the new treatment I can feel it, if anything had changed much the CT would have picked up, try not to worry as you usually tell all of us, love to Mathew and the girls. xxx
Carrie, good to here you and B are in a good routine now and you are getting lots of help, love to both. xx
Julie, hope you are okay take care xx
Diane, hope you enjoyed your chippy love to you all xx
Debbie, hope all is well with all from Shefield xx
Lesley, hope all is well in Edinburgh xx
Joan, greentree, CH, Becca, Lorraine, Lisa, Izzy and everyone else love to all.
Jay -Im so glad to here that you are managing Im sure it will be a wonderful celebration of jons life and the love you share!! Im so glad you are still posting we all need to support each other and you are integral to the support network!!Keep posting petal when your going through waves of sadness we will ride them with you and keep sharing thoses wonderful memories of your amazing man Jon!! Love and strengthy for wednesday DEbbie xxx
Carrie- so nice to read your post I think of you both daily hoping all is well,keep smiling petalxxx
Gayle-glad to hear you had a good night at the theatre,everything is ok here thanks Dad still on a high from our trip to Glasgow(it must be the good air!!)
To emma,lesley,greentree diane,izzy joan and anyone else my dizzy mind may have missed wishing you all a wonderful suuny day Off to nursery Debbiexx
