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.
Greeting from sunny and beautiful Edinburgh -- my word, what a difference a blue sky can make to your mood
Gayle, glad to hear Ayrshire is getting the sun too! Enjoy your show tonight...that's excellent winning tickets, Martin is rightly proud of himself..what show is it? Paul won a xmas hamper in Dec at the local swimming pool....i was soo excited, first thing we've ever won! Hope Martin's swollen ankles will get better as the day goes on.
Debbie - great to hear your mum and dad got back safe and sound. Not so good with the seizures though...ive only witnessed that once and it was very scary. Superb that you all got the lift you need...Professor Rampling and the Beatson seem the way forward...might have to remember that for the future! Us scots are not a bad lot afterall eh!
Emma - hope Matthew has picked up today - I'll bet he's at work eh!
Carrie - how are things with B today/ is it this week your friend comes over?
Izzy - not heard from you in a wee bit - let us know if your ok if you can.
Thinking of Joan, Becca, Greentree, Karen,an everyone else today too and hope today is kind to you all.
Well my dad got out hospital yesterday - the district nurses are coming in twice a day to give him the anticoagulant injections into his stomach. His body and legs are a real mess with bruising but hopefully this might be under control - the dose he was given last week was massive and i think wrong hence the reason his blood was far too thin and he ended up back in hospital. Hopefully they've got it right this time. The hospital forgot to do a blood test yesterday so he had to go back up this morning to get it...im just off to collect him...sick of the sight of the Western general. Never mind eh! love lesley xxx
Just watched Reporting Scotland and the first headline was about brain tumour patients not been recorded for official statistis, this is causing major problems as it not allowing bugeting for bt patients after treatment, there is no official support but the consensis is that cancer patients are living much longer due to advance in treatments, but bt patients are suffering because of being missed out of the stats list, our consultant prof Rampling was on talking about it, he said that only 600 patients a year are reported in scotland, but there are actually thousands, it was very interesting, no wonder its showing up as a rare cancer when its not been added to the stats, there was a young bt patient who was operated on 5 years, he said that the hospital and treatment were fantastic, as was the support but once the treatment finished there was no support what so ever!!! Hopefully this will publicise BRAIN TUMOUR AWARNESS AND LET PEOPLE SAY IT S NOT RARE. Hope you find this interesting.
Gayle, I think that is an interesting and very, very important post.
That you get the standard treatment and after that what treatment is offered can depend on so non-medical variables such as which doctor you are under is, I think unacceptable. I feel we have been lucky in that the standard treatment worked quite well for B. but how do patients who haven't got a pushy partner to fight their cause manage and chase preferred doctors and hospitals? I've often thought that newspapers probably shy away from the subject unless someone famous has been unfortunately diagnosed with a bt or simply because the diagnosis is so frightening and that there seems to be no known cause to which it can be linked with headline indignation. If someone with a bt should die of a related but separate cause, perhaps a stroke, is it recorded as a bt?
Gayle-first of all havea wonderful evening hope its a fab show!!I It was a very interesting post and Im afraid its very true our loved ones arent counted in statistics .like CH says depending on so many other factors where you live ,your nearest hospital ,your Doctor !! decides on your treatment and wether you are as well informed as the next person,I feel so very sorry for all the families out there,feeling they are being offered only palative care and dont know how to fight for their loved ones.Everyone deserves the best care even if they have a GBM grade 4 so bloody what!!!I know there arent millions of survivors but hopefuly soon there will be!!! I must say that Prof Rampling and his team in sunny Glasgow were so uplifting empathic and understanding this is just as important as what chemo drug they prescibe.....Ive seen it with my own eyes, yesterday my Dad was on top of the world ....he felt that someone had given him a glimmer of hope and boy is he running wild with it!! today hes been doing leg exercises and been for a walk and then sat in the lovely sunshine reading a book its unbelievable the change a 551mile round trip can do. I know Americans have to pay for their treatment or via insurance but after speaking to the team at Dukes hospital they are so motivated and dont see GBM bts as the end of the road,Dr Fieldman writes that our loved ones should be given the best treatments available including new trial drugs and not seen as pallative!! How can we raise the awareness of BTs maybe we could do something as a group??? Ok Im soapboxing again sorry its all the redbull ive downed in the past three days! Debbie Lesley-glad to hear your dads finally out of hospital I hope his leg starts to improve soon xx
CH- HA HA HA You must be joking Ive nether the body nor the boobs and believe me wed never sell a copy if I was even part naked!!!! I just thought that we all feel the same way about our loved ones and family members going through this blooming ordeal together maybe we could petition parliment???I think a petition would be safer and may have a better chance than the WI calander!!!!ha ha Debbie
Gayle - cant believe I missed that on Reporting Scotland - how very very interesting and important. Was it highlighting what we have had to find out for ourselves? That research and care for BT's are GROSSLY underfunded compared to other types cancer. I've always had major doubts about it being "rare" as I know personally of three men (none of whom are alive unfortunately) who have had terminal BT's in the last 10 years....I think thats a lot considering.
CH - i think your right, it is a subject that newspapers seem to shy away from - is it a fear of the unknown? As for the Calander - we could superimpose our faces onto other bodies....maybe Elle McPherson et al would lend us theirs?! Oh yes, im up for that ha ha
Debbie - Parliament here we come - IM THERE whatever it takes!!! Meant to ask you, why have you changed your dad's care to Glasgow? Is it because he is eligible for a trial at the Beatson? Just curious! xxx
Lesley – I think I need to look out for a Best of Barry Manilow CD, or should I really embarrass my boys and ask them to buy it for me for my birthday. Hope your dad is feeling less messed about now. Didn’t they keep him in an extra night because they wanted to do a blood test? And then to forget it! It’s a good job you live so close to the hospital. Yes, it is this weekend that Max comes over from NZ. It’s such a shame though that we won’t be able to entertain him much as B gets so tired now. I hope Max will understand.
Emma – just reading back over your posts since I last posted (if that makes sense) as so much seems to have happened with you over the last few days. Matthew is such a toughie isn’t he. Going through all of this and still at work. I have a lovely image in my mind of you storming into his work and giving him his dex and his colleagues standing there open mouthed! I hope things have settled down now.
Rona – hope things are well with you and your dad.
Petra – I know nothing about blood clots. Thank goodness I haven’t had the need to find out, we have had the opposite – nose bleeds! Anyway, welcome.
Gayle – how’s Martin’s foot? Well done to him for winning the tickets. By the time you read this you should have seen the show, so I hope you had a lovely evening. I wonder why BTs are not reported for statistics. I though something CH said once was interesting, that one day BTs will be separated out into different types and dealt with differently. They are just so complex.
Lisa – that’s fantastic news that your dad is eating the icecream. It must make him feel better if he can eat something too.
Izzy – I think we are all starting to get really concerned about you, Blair and baby. You were having another scan this week weren’t you? Sending you lots of love and hugs.
Debbie – you must be exhausted, but it’s amazing what you are doing for you dad. Fingers crossed that something positive comes out of it. Are you going to be able to sleep tonight with all that Red Bull in your system! Stay on your soapbox though I might join you.
To all of you who attend the Beatson it, and the staff, sounds an amazing place. A world away from the Sussex Cancer Centre in Brighton where the consultant was ok, but I felt we had to ask questions all the time rather than information being offered to us. And as for the Macmillan Nurse there. I think we saw her twice in all the time we attended. Once B asked to see her, he also had a medical question which a doctor answered and because we saw the doctor the Mac Nurse assumed that B no longer needed to see her. He was at that stage feeling really down and just wanted to chat with her but she never bothered to see him. Mhari sounds like an angel.
CH – calendar!!!!!!!!!!!!!!
Debbie (again) – a friend of mine who’s into causes once said that if you wanted to raise awareness of peoples’ opinions, it was better to write individual letters rather than raise a petition. Apparently a petition (no matter how many people have signed it) only counts once whereas each letter has to be counted individually. The letters can be standard letters, photocopied but they are ok if they are signed individually by different people. I hope this makes sense.
Can I have Halle Berry’s body in the calendar please?
