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.
Things a wee bit calmer here today, Martin got up at 8am, as he has been doing the last few days but he went for a wee sleep this afternoon, for 45 mins he still very chatty surprised his throat not sore lol.
Izzy hope your husband is okay with his chemo and he is not to sick.
Lesley hope your dad is doing ok how did jo jingles go?
Emma as Lesley says goodluck with the hospital keep us informed.
Joan still waiting to hear from the hospital re herbal medicines thats been over a week.
Hello ladies - reading posts and thinking of you all - Got relatives staying and can't find time to write - very frustrating as D is struggling at the moment and it's really got me down - This is such a sad horrible thing and I'd do anything to find us all a happy tomorrow -
will write soon but in the meantime sending you all lots of love and hopes for a peaceful night (Gayle, sounds like you need one..!)
Joan so sorry that you are going through a rough time just now, how is B today? hope he is a bit better this disease is just so bloody awful isnt it hope your relatives are giving you the support that you deserve. Martin still in bed he has decided to have a long lie today we shall see how he is when he gets up.
I've not posted much recently but I have been keeping up to date with all of your news.
Gayle - Good to hear Martin is resting in bed, you must be worn out with his contant chatter. Sounds like he may have worn himself out too.
Joan - Sorry to hear you are both having a hard time too. Why does it seem to get to us more at sometimes rather than others. I wish someone could invent a magic wand to take us all back to the time and the way we were before all of this started for us.
Hope you all have had a good day. We have been at the Marsden all day today for these tests before the trial which I am pleased to say hubbie passed.......BUT - why is there always a but.. they did an MRI scan first thing this morning which we knew about but I wasnt expecting for them to tell us the results, I thought it was just a marker scan - the tumour has grown considerably since his last scan and they are gobsmacked he is still doing what he is. Its really strange I feel so flat and low even though I knew the damn BT would of grown as he isnt on anything to stop it, but just hearing them say that has knocked the stuffing out of me this afternoon.
They are really suprised he has improved in some ways - his stutter has gone - his word bank is slightly better - memory still pants but you cant have it all, they have warned me he may suddenly deteriorate, have fits, or severe headaches with vomitting - none of which he has had for over a year when the tumour was smaller. Very strange how it seems to be going........
I guess it just goes to show that you can never really tell whats going on, these damn BTs affect everyone so differently. Anyway I cant post anymore tonight, dont want to ramble on and depress everyone else. Tomorrow is another day and I should look on the bright side at least we have the trial as a last shot.
Anyway hope you all have a peaceful evening and a glass or two of your fav tipple - pleased to report I am on the wine already!
I am so sorry to hear that Mathews tumour has still been growing, it must have been a blow for you today, Its so bloody unpredictable at least Mathew is still well, is he still working? At least he is fit enough for the trial and that does sound very promising, keep believing your husband is a real fighter and he will do well in the trial, for you and the kids, enjoy your wine thinking bout you and your familyxx
Emma, sorry your a bit disheartened after your hospital visit - your hubby is one hell of a fighter to still be working two years down the line - when I tell my mum and sister snippets of stories from here, I have mentioned your hubby..who is truly inspirational to us on this site. Obviously there is no rationale with gbm but hopefully this trial will be the one that helps you both continue to conquer. Chin up girl and enjoy that drink tonight.
Joan, hope your hubby's picking up a bit - its that damned mirror effect eh - when your loved one is ok, you are too - when they're not...well, its just bloody awful.
Gayle - hope your enjoying your well deserved cheeky vimto weekend, and that Martin (is he still chatting away?!) and Martine are good.
Well me and the kids are wiped out with the dreaded lurgi, just in time for the weekend, so its lemsips all the way for me!
Did not bother with a wee drink last night, as we are all going out today as a family,. first time for many months Martin feels up to it. So I did not want to risk having a few, incase it led to more! Then Id be unable to drive today. Really looking forward to going out with Martin and Martine, we are off to sunny salcoats to meet some friends and go for a meal and take the kids to the amusements, nothing to exciting but the most we have done together in months, then tonight it will be vimto time!!
Lesley, Martin is still talking as much well he has calmed down ever so slightly he goes from one extreme to the next this illness is so unpredictable, hope you and the kids feel better over the weekend not many people are missing the dreaded flu, I still say a medicinal wine would work wonders lol.
Emma, hope you Mathew and the kids are well, keep strong this new trial will kick the tumour right in the a**.
Joan hope things are better for you and D and that he is feeling lots better take care'
Izzy hope your husband is doing ok with chemo.
Carrie hope all is well with your husband and you and the rt is not to tireing.
