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 Christie I will get it off H later she hasn't been on line today yet has slept most of afternoon. It went well yesterday they are coming to film ? next week its for the Samantha Dickson Brain tumour trust- hopefully it will highlight the issue of BT and the impact on lives but I also want to get across how it is the Cinderella Cancer that doesn't get as much funding. It should be on 19th July on BBC. I will post the disc tomorrow- hope it helps! Hope your ok take care Love Dianne
Hi Christie I will get it off H later she hasn't been on line today yet has slept most of afternoon. It went well yesterday they are coming to film ? next week its for the Samantha Dickson Brain tumour trust- hopefully it will highlight the issue of BT and the impact on lives but I also want to get across how it is the Cinderella Cancer that doesn't get as much funding. It should be on 19th July on BBC. I will post the disc tomorrow- hope it helps! Hope your ok take care Love Dianne
just a quick post, just got home today not been feeling too well :(. Also took Martin to the docs today, he has had very sore knees and a poor appetite for a couple of weeks now, but he is also completly off the dex now, the doc says these are just side effects of that and it shall all regulate, tho at the moment very worrying as the weight is just dropping off Martin (wish it was me).
Laura, ((((bighugs)))) you are having a real tough time just now, lack of sleep wont be helping you, I have been through all that, you take care of you as you need to take care of your husband and baby. xxx
Rona, safe flight bet you are so glad to be going home to be with your dad and take care of him. xxx
Michael, hope your dad is doing ok on the treatment now. xx
Dianne J, you are doing a fantastic job with your daughter, that must be so difficult for you, with her being so young, also the support you are giving Christie is great. xxx
Sallye, hope you manage to get a wee break, its lovely to get away, we are very lucky we get away every weekend its fantastic, life feels so normal when we are at our caravan, sometimes I forget all about GBM!! xxx
Becca, so glad you had a nice time on holiday, you all deserved it, love to you all hope you are all coping. xxx
Lorraine, Hope you had as nice a time as possible on your few days off with Scott, hope your mum is a little better. xxx
Emma, big hugs to you and the girls, speak to you soon, xxx
Lesley, hope you find that phone soon and more importantly hope your dad is well, we are watching scotland today, a bloody animal cancer has just opened up in edinburgh with rt machines, ct scans the full works, they shall be treating everything from mice to horses, they need to put more money into BTs before they do that in my eyes. xxx
Christie, hope you are ok and feel better on your chemo break. xx
Julie, hope Stephen is a little better. xxx
Diane, hope you and the kids are getting by and getting ready for your holiday. xxx
Joan, how are things with you and David?? xxx
Carrie, hope you are ok thinking of you. xxx
Jay, hope you and the kids enjoyed florida. xx
everyone else lots of love, well its off to bed for me and Martin now to watch the unborn.
My dad, was diagnosed with grade 4 gbm in August '08, we were told that it was inoperable as was deep. He was given radiotherapy with chemotherapy, then started a further 6 month course of chemo but has not had the last 2 months as was given a break to try to regain some strength. He turned 60 in March as although was very tired was himself and was up and about and fairly active. He had a scan which "was better but still some swelling" so they decided to give a break from the chemo however since instead of getting stronger he has got more and more tired and weak, the last few weeks have been awful he had a brief stay in a hospice to get some physio and to give mum a break but only latest few days as he got so agitated and confused/upset as to where mum was so he went home. Again is no much worse just wants to be left to sleep can't move himself doesn't want to eat etc etc very grumpy and bit snappy to mum who is doing her best to encourage him. She now has help coming in which is great however being who she is she doesn't dare ask the dreaded question "Is this the end?". He is awaiting blood results to rule out any underlying cause for his tiredness but we are all fearing the worst. He is due to have a scan next week and she was originally told that she could book transport if need be but however has now been told by one of the nurses that if he gets weaker they may not scan.......can they do this? What does this mean?
Hello jenniferW, my mum has been similar to your dad - overwhelming tiredness and weakness, but luckily she is coming out of it now. I have heard taht some consultants don't bother with scans very much at all - they say taht the symptons are the most obvious signal of what is happening inside. Is your dad on dexamethasone at the moment? That reduces any swelling so would help with the confusion, although the dexamethasone can also cause confusion.
Sorry that you find yourself here, another family being affected with this nightmare of an illness, every reacts so different to the treatments, some go through all treatments so well, others struggle. The extreme tiredness will be due to all the treatment your dad has just gone through, try not to worry too much at this stage. As Sallye said is your dad still on the dex? My husband has just recently stopped taking it altogether and he is so very tired at the moment and has very sore knees and joints are gp said yesterday, not to worry it shall all settle just give Martins body to adapt to the change he has been on the dex for a year now, also over the past 2 weeks his eating has slowed right down to the point he hardly eats and the weight is dropping off him, very worrying indeed and not nice to see, but apart from this Martin had pretty much sailed through his treatment and he loves his saturday nights out where he dances all night and finishes the night with a few songs on the cabaret, so keep your chin up and keep your hope alive, without this where would we be.
He is still on steroids has been since diagnosis he had got right down to only taking 2mg but since got weaker and more tired it has gone up the hospice put it right up to 1 I think which I think caused him so much trouble with the confusion in there. I think he is down to 6mg now but it is the steroids that damage the muscles in the legs so its a viscious circle.
I wish dad would enjoy saturday nights he is not interested in anything anymore not even reading a newspaper, makes you feel like shouting at him to fight this bl**dy thing!
I will fight for this scan if we have to, I am unsure whether it is the tumour/treament causing the way he is now as he doesn't have the symptoms he had originally before diagnosis (sickness, extreme headaches, unable to feel one side etc etc) or whether he is simply depressed and fed up and is giving up.........
Any advice or ideas gratefully received, this is such a cruel disease....
hello dianne how is she, feeling better today ? thanks again for the Cd =D
gayle i compleeeeeetely agree, i can not believe they have rt machines and scanners when there are things like this happening to people, completely insane!!
take care everyone sending out all my love hugs prayers xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Just a little 'hello' from mum's pc as I am there at the mo.
Things for us mainly the same, Mum has been in bed for 4 weeks now, I personally don't think she will ever be up again, infact she won't be up again, mac nurse was in today and was very honest with Dad and said it will be downhill all the way now well that was maybe not her words as such but those were Dad's to me when I came home from work, she could not indicate a timescale as Mum still eating away, 2 weeks ago she could not eat a thing but since she has been on antibiotics she has managed soup and puddings and soft food but folks deep down I have always known there will never be a miracle for this evil illness, kinda glad that I did go in with two feet and found out all the stats etc as I would rather know what I have to face thats just the way I am, but believe me and even yet I have this little bit of hope as she is still eating and speaking to us tonite I did have a little cry, crying for the Mum that I have lost a huge part of already and thats her still here but she no longer does the things with me that Mums and Daughters do, I am also hurting for Dad his wife of 36 years that he adores so much and at the same time I am hurting like crazy for my own husband as he is bang in the middle of this awful time we are all going thru the now not knowing how his wife is gonna be as somedays I am up and others I am down, I suppose that is only natural, I know some of you might think why am I still working well folks I just want to say and I know deep down no-one will ever doubt me and its my choice but I feel until I know the time is near I want to try and keep going as best as I can and believe me when I am at work it takes my mind off things just for a little while, it is hard and a huge part of me wants to be at home with her all the time but I have already had 14 weeks absence during Mum's illness and I know when I am at the end of this journey I will need time of so thats why I am persevering so much to go just now.
Gayle - Hope your feeling better hun, text you soon, a guy has posted on the WTBT thread saying about a Prof Rampling and Beatson etc thought you might want to have a nosey and see.
Lesley - Hope your ok, missing your texts and chats, how is your Dad?
Becca - Thanks for your lovely message think of you so much hun it must be so so hard and I am know deep down I am getting near that place you are, I will def pm message you one of these days for a chat.
Diane - Hope you and the kids are doing ok, think of you lots too.
Emma - Your post was lovely to read hun, think of you lots will drop you a pm message one day soon too.
Christie - Hope your feeling better nice you and Dianne J daughter's are keeping in touch.
Jennifer - So sorry you have had to find us, this site is amazing and thanks to my lovely friend Gayle who set it up its going from strength to strength and so glad we all here for each other.
Well folks I am off now to say nite nite to my lovely angel and head home for a nice bath before I head to bed.
Lorraine Sorry to hear that your mum is in bed and things don't look like they will improve it must be so hard to watch I can feel the pain you feel. Hi Christie H is much better today thanks for asking she got through the physics exam ok. Are you sleeping any better? BBC Lifeline are coming again next Wednesday. Hope everyone else is muddling through. Are there support groups in the areas where everyone lives? a friend and I think that a support group would be helpful to dip in and out of but there do not appear to be any locally. Diannej
