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 guys, thank you so much for all the good wishes lately.
Joan, just to say hi and hope the pcv works wonders. I know you will be gathering the supplements to stave off any side effects. Don't forget about the notorious bt bounce. Just when you think things are bad, suddenly our loved ones can feel much better. I think you are due for a bounce very soon. xx
Today at work, one of my less subtle and to be honest not the most handsome colleagues said it looked like I'd been visiting the fridge too often lately. Cheek! Now I can't deny the accuracy of that remark but there's no need to say it is there? Anyway, it reminded me of that Winston Churchill quote:
Lady Astor: "Mr. Churchill, you're drunk!" Winston Churchill: "Yes, and you, Madam, are ugly. But tomorrow, I shall be sober."
Well, tomorrow (or OK maybe next year) I shall be thin!
Just with B in the hospice and using his laptop, so it will only be a quick post, honest!
B had his scan yesterday and then we met with the oncoligist and neorosurgeon. They told us that the tumour was a little bigger, but they couldn't say whether that was due to the treatment, or that it's still growing. As B is already on 16mg of dex, they don't want to try more tmz as they won't be able to give a higher dose of dex to counteract any swelling the tmz may cause.
They basically then said that we should go away and see how B is over the next month, but they didn't give us a date for another scan or another meeting.
I'm not going to dwell too much on this, I'll just wait and see how he is over the next few weeks.
Our good news however, is that finally it looks as though B will be coming home some time next week.
It's lovely to hear all of your good news too, but sorry to hear that some of you are going through not such good times.
I'll get back to one of my longer more rambling posts soon, but until then I'm sending you all a big hug and thanks again for all your good wishes and thoughts.
Just popped on to say hello and let you know im thinking of everyone...been a couple of days since Ive posted and already im way behind so excuse me if ive missed something!
Joan - lovely to hear from you - hope your doing ok. Have you decided to go for the pcv? The moors sound an ideal place to let off steam...mine tends to be the car nowadays...especially when songs from the radio hit the old emotions button - seems to be any song nowadays...even Bucks Fizz has me in bits!!
Gayle - still no snow here...i think the east has missed it all and the west is being very greedy by keeping it all! Hope your still on a high about your holiday...that's just great. My mum has been trying to convince my dad to take a wee jaunt seeing as he's "ok" just now but he's having none of it...keeps saying "when he's better in 6 months" he'll go. oh dear. Never mind, dont want to force him into anything. Martine will be hyper i bet!
Debbie - sorry to hear about your dad...hopefully you'll find a trial out there that he may be suitable for?
Carrie - Glad to hear B is coming home...you'll just be wanting him back where he belongs.
Jay - Pink limo's and 70's nights?...i look forward to whatever comes next?! Your both obviously full of spirit and determination - so great to see.
Izzy - good luck for BOTH scans this week - what a juggling act for you this week - fingers crossed all is well.
CH - Fantastic news again...so pleased for you both.
Emma - cheers for SMASHING me at scrabble!!
Karen - hope your ok too?
Nothing much more to report this end - I phoned my dad's cancer nurse today to ask about a few things we maybe missed on the day of the results. I thought my dad's tumor had shrunk but apparantly not...its "static"?! Ive noticed lately too that he's obsessed with talking about the illness.ned ..its constant...every conversation is turned to the disease...especially statements about how he's still "a year away from being better". My mum despairs a bit as she tries to keep some normality (whatever that is) but it doesnt work. Maybe that's his way of dealing with it day to day. Who knows.
This is one of the hardest things I think I’ll ever write. Mother lost her fight against this awful disease yesterday afternoon. I was with her at the time and she went peacefully. I can’t believe how quick it’s been, just over 8 weeks from the time we found out that this thing was in her head until now. It feels like the bottom has just dropped out of my world. Never again will we be ‘ladies wot lunch’.
Dear Karen, so very sorry to read the sad news about your loving mother, thinking of you at this sad and hard time for you, peace be with you.((((((hugs)))))
Hello Karen, I dont think we have spoken before, I am so so sorry about your mother, I really dont know what to say but my heart genuinely goes out to you.
Carrie, glad to hear that David is going to be getting home with you sometime next week, that will cheer you both up so much, first scans after the rt are usually inconclusive, you take care. xx
To all the rest of my lovely friends, thinking of you all
Thank you for your kind thoughts. If it's OK with everyone, I'd like to stay in touch. Who knows I may be able to help someone else in the future, although I hope that I don't have to. There's so much to do now so I'll visit here when I can.
Karen - thinking of you and sending you big hugs - YES please keep posting you do help others when posting and its also kind of theraputic too - take care xxxxxxxxxxxx
Hi Karen, Its Julie again, When you are feeling up to it I could meet you for a coffee, I do believe you live Leeds area I dont live far away and I could drive over.
I dont know wether you know but my partner Stephen was diagnosed with GBM in Dec 08.
Thinking of you at this very sad time Love Julie xxxx
Hello everyone, hope you are all ok. Speak soon love Julie xxxx
