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.
Emma did get to sleep eventually, but kept getting awakend by Martin having strange dreams our specialist nurse told me that is part of the seizure does Mathew have strange dreams? The funny thing is Martin remembers them the next day he doesnt remember most other things though. Martine was brilliant she helped calm her dad down and was truelly a star, hope you had a nice weekend with your friends.
Sisters sorry that you have had to join this site GBM is a horrid disease that at this stage can not be cured but there is hope that might come, re time no one can tell there is one lady at our clinic who was diagnosed over 8 years ago and the only treatment she has had is 6 weeks of radio no op or chemo there are others who are over 2 years so there is some hope, although in some cases it is much shorter, re Australia only you and your family can decide on that one, take care.
Hi everyone Gayle gald things are a little better today. matthew doesnt get funny dreams - in fact thats the one thing he is really worried about - going to sleep and having nightmares - he tends to stay up till the wee hours fall asleep on the sofa then drag himself to bed so he goes straight to sleep!!? When he was having petit mals (not had one for a while - touch wood) he was sort of halucinating - he saw Robbie Rotten from lazy town! (couldnt be a buxom blonde now could it!!!!) he would also be vacant but I could talk to him and he knew where he was - really strange to see - up until now we have been fairly lucky on this front - not sure how I would manage a grand mal thats for sure. What a star Martine is - it just shows how resiliant and amazing kids can be (that is when they arent driving you round the bend! mine anyway!) off to peel potatoes for dinner tonight now - managed no wine last night - not sure it will be the same tonight tho!
Emma it is amazing how the kids react, Martine has great throughout this whole nightmare in fact she has been a tower of strength to me, unless she drives me round the bend as you say lol. Martin gets that vacant look as well just before the seizure and he remembers everything about them, well I had a nice bottle of rose last night very nice, Lesley do you have a hangover today after your party lastnight.
Emma it is amazing how the kids react, Martine has great throughout this whole nightmare in fact she has been a tower of strength to me, unless she drives me round the bend as you say lol. Martin gets that vacant look as well just before the seizure and he remembers everything about them, well I had a nice bottle of rose last night very nice, Lesley do you have a hangover today after your party lastnight.
Gayle- Sorry to read about Martin's seizure last night - i'm afraid I don't know anything about them but was touched by how you said Martine coped - this disease is so shocking and inexplicable for our children isn't it ? but she's obviously a little Diamond that loves her Daddy very much - It can be amazing to see a child's strength and care at a time like this even if they don't truly understand about the condition - perhaps because they see it on a simpler level than us .. Do hope you'll all have a peaceful night together tonight -
Hello Sisters - echoing what the girls have said - sorry you have to find us but this site is the most fantastic help and support ..Have GOT to recommend you another site as well which I visit a lot and that is www.btsurvivor.com - Do check it out because it's Australian and most people posting on it are BT sufferers who know the in's and out's of all the best hospitals, treatments and surgeons etc in Australia - they could really give you some good advice ..Hope this helps
Sisters - so sorry you find yourself here but you've come across the best place for advice and it really helps to be amongst people who truly understand your feelings. Its my dad also who has gbm. I clearly remember the feelings of the shocking first few weeks after diagnosis, you'll probably feel like your life has been turned completley upside down. Thinking of you all.
Emma - poor Matthew - Robbie Rotten is one bloody scary looking character!
Gayle, sorry to read about Martin having another seizure - do you have to report it to the doctors or consultant at all? Martine sounds a very resilliant, caring wee girl - I imagine you feel lucky to have her. Damn this blasted illness. (Hope you enjoyed your Rose - I was very well behaved last night and got home at 2.00am - still couldnt escape a bleedin hangover though, im such a lightweight nowadays! feel absolutley knackered now so Im off to bed for a read!)
Lesley your are like me I get hangovers so easily now its so unfair, I am ok today jthoughust tired after the events of last night hopefully a nice peaceful night seizure free, nite nite Lesley,Emma,Joan,Izzy and special thoughts to the sisters and Dot and Rodger.
I am clueless as far as posting is concerned so not sure if I will 'land up' in the right place. Simply want to say 'hi' to everyone. Been reading some of the posts over the last 5-6 days/nights. Everyone here sounds really special considering everything you and your families are having to cope with every day and night. So I thought I would just 'pop' in here.
You'll notice from my profile that I am starting my 1st 6 week radio+chemo (TEMODAL) relatively soon. GBM! First symptoms November last year ('08). Diagnosis/prognosis confirmed this year (7th January '09).
I don't really know what to say at this point. I expect I will as things unfold my end. Take care everyone.
Welcome to our little thread, sorry that you find yourself here, you will get lots of help and support here, how are you feeling and coping, I read your profile you have a lovely family behind you. Morning everyone else hope that you are all well.
Morning everyone I hope you all had a good night and no hangovers today! Lesley 2am - how do you do that - I am asleep on the sofa by 10pm!!!!!
Gayle hope yesterday was a better day for you all. Izzy & Joan hope all is ok as it can be??
Nothing new to report here really - hubbie has had a little 'tummy' trouble in the last couple of days but guessing its the Dex and nothing more sinister. Cant be too bad though as he has gone to work this morning at the crack of dawn as per usual! Am meeting with the solicitor to discuss his contract with his employeers - they are taking the p*ss thats for sure and its not legal so just another little battle to keep me occupied!!!!
Len - so sorry to hear your diagnosis - this thread and the We talk brain tumours......I hope you will find helpful - most of the people on these threads are looking after people or themselves have GBM, or another type of brain tumour, and have been through so much. I have found it a great help being able to let it all out on here and ask questions - people will be able to tell you their experiences and be totally honest with you (although sometimes it might not be what you want to hear!) so ask away! I read your profile & was interested to hear that you have have chemo wafers?? have no idea what they are but they sound like them mean business thats for sure! Sadly we are nearing the end of the treatment journey - my hubbie is onto the drugs trial stage now - which all being well we will start in 2 weeks.
Anyway off to walk the dog now in the sunshine for a change!
