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.
Sorry to hear about your hubby Emma tummy trouble not very good, he is amazing still being able to work you must be so proud of him, he is certainly sticking his two fingers up to glioblastoma. Len sorry that you find yourself here you will find plenty of help and support here you are the first person I have heard of getting those wafers how do they work what is their success rate. My hubby is doing well due to start the chemo again next week dreading all the sickness again its terrible. Seizures must be terrible Gayle lucky for me my hubby doesnt get them Lesley your turn for the hangover I was whisky free all weekend Joan keep the good information coming you are a star.
Len, welcome to this site, sorry to hear of your diagnosis - I had a quick peek at your profile and see you've got your lovely family behind you which is great. Its my dad who has gbm (diagnosed Aug 08), unfortunatley his was inoperable but I notice he had some silimar symptoms, such as word loss & word recognition. Also gladiel wafers seem to be used more in America than in Britian so its great you've had that done. As the other girls have said, please ask anything you need. Best of luck. x
Emma, i never normally last till 2 00am - Im normally a "jammies, settee, glass of vino in hand" kind of girl on a saturday night nowadays, my partying hard days are well and truly over! (at the grand old age of 36!).
My mum and dad managed out for a meal on saturday night with my mums brother and his wife, which is still a great improvement. He used to always hold centre court when out but now is a very very quiet man...my mum more than makes up for him though! (just covering up and trying to be light-hearted as i find it sad to see).
love to you all and hope you all have a peaceful day. x
We had another restless night no seizures thank god, Martin kept wakening up and talking all sorts of rubbish, one time in particular I could hear him speaking to someone as I looked over he was over at my clothes I asked what he was doing and who he was talking too, he said it was my brother who died over 30 years ago as a toddler, he has said this many times too me with different stories, this time it was I sat the wrong clothes out for Martine and she would not wear them no wonder I said they are mine, but he was convinced they were for Martine it was hard work convincing, the next thing he said Craig my brother was away to see my Martine two minutes later Martine came through to our room wanting a drink she never does that, I find it all so strange have any of you had similar occurances?
Gayle, that was a strange experience you described, I've never had any experience of anything like that at all, bizarre isnt it? Things like that can really make you think.......
Its my Jo-jingles morning with my Joe so will have to start getting ready for that!
Gayle, I have experienced what you described in your previous post. Once many years ago and my then employer saw some old friends in his room when he was ill. My mother also saw many old friends and, what I found very comforting, her pets going right back to her childhood. Neither experience was at all unpleaseant but seemed just normal.
I know this might sound a bit odd to many people but I choose to take comfort from it, other days I can also believe that it is just the mind playing tricks.
A while ago, Martyn on WTBT talked about how supportive we posters are as a group and wondered would we be so if we just passed each other walking along a road.
I've thought about that question quite a lot and I think that an experience like this opens you up to feeling more compassionately towards others and I wonder if it also opens up the possibility to be receptive in other ways. I hope this doesn't sound too wierd. It's just something i get some comfort from, I don't think I am crazy (yet!).
Hello Len, I mostly write on the We Talk Brain Tumours thread but sometimes can't resist joining in over here too. I'm sorry that you had the need to join but I know you will find it useful with helpful people who have been wrestling with gbm and other bts - or are caring for loved ones. Keep posting, I'm sure it will  be helpful.
CH Martin has been seeing spirits for sometime now when he awake during the day and also whilw in dreamstate, including the two months before diagnosis of the tumour, he kept telling me that elfs and imps kept telling him he would be in 3 modes of white transort and all his hair would go it would be tough but things would be ok this was in the middle of the day while he was wide awake he kept telling they were coming to see him nearly every day, I thought he was daydreaming but he was convinced, two months later this nightmare all began. Now its all starting again. The last two days Martin has got up out of bed at 8am and is very active and he has now decided he wants an excerise bike he has decided to go and get fit again, he has not stopped talking for the last two days either and I mean literally hasnt my head is busting he talks some sense but most of it is complete nonsence, , he called his sister yesterday 3 times for over an hour each time and he just kept repeating the same things, its so scary, the seizures are still happening the gp was out yesterday and has put the lamoutragine up so fingers crossed dr rooney from edinburgh was also here yesterday for research and he is going to pass this on to our team as its normal.
Evening all At last I can post (I hope!) its been sooo slow on here today nothing would work - bit like how I feel tho!
Gayle I sent you a message via face book earlier as couldnt get on here - not sure if you got it or not?
CH - I replied to you on we talk - hope it helps!
Evening Lesley - hope you & Joe had great fun at Jo-jingles today - can remember doing that with the 1st and feel really awful the 2nd never got a look in at stuff like that!
Izzy hope your ok & you too Len.
We are back at hosp Fri, Mon, & then D day is Thursday will they let him go onthe trial or not...... he has loads of test Fri & Mon feel really sorry for him we will be there all day both days and it knackers me out & I'm not the one whose being poked and prodded! Anyway lets hope its worth it.
Oh no my poorly 3 year old is up again - only just tucked her in! Kids eh!
Emma got your message thanks very much just not been on much today, things so topsy turvey here Martin is now like a robot he talks constantly from getting up at 8am until going to bed he is still up just now talking about everything and anything, called the hospital but still not heard anything back, hope all goes well at the hospital on friday with Mathew let me know what happens goodluck.
Hope everyone else is okay I am going try and get Martin into bed now my head is bursting now.
Chemo here we go a again I hope my hubby is better this time around he is doing so well at the moment and I hate the thought of him being so sick again its so unfair I HATE BRAIN TUMOURS Its very cold up here in Aberdeen not going out at all today staying in home with the fire blaring. Gayle you are having a rough time just now it must be so difficult dont have any advie for you sorry Lesley hows your dad and your kiddiewinks Emma how is your husbands trial going has anyone else been on this trial before morning Joan and CH the informative ones
gayle - hope your day is more calm? sounds like you've been through the mill a bit lately.
Izzy - hear hear! Think everyone on this site shares the same sentiments - fingers crossed your hubby isnt so sick this time. my dad's not too bad just now, getting out and about with my mum so big improvement again.
Emma - tomorrow and next week are obviously very important so just to say- GOOD LUCK - hope all goes well.
Joan - Hope all is well at your end
Love to everyone out there
Just a quickie as I now have to take Amber to swimming lessons, I swear, that girl has a better social life than me....and she's only 3! xx
