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.
Well the wine is all gone now -yes thats another bottle!
Side effects where to start! the most likely - Diarrhea, nausea, vomiting, stomach ache, fatigue, change in taste, mild liver problems, rash, headaches, blisters to palms and soles of feet, hoarse voice(!?), hair loss, mouth sores, cramp, kidney trouble, blury vison, lower immune system, then the very rare - blood clots, bleeding heart attck hole ingut, tear of eye lining - my god the list goes on and on - the list everything that has ever happened to anyone since its a trial so you just have to give it a go - you can stop at anytime so think once we talk properly he will go for it - what have we to loose - yes there is the quality verses quantity but we can stop this in 2 weeks or a day if we decide its not what he wants.
his mum is driving me nuts again - wanting to read all the info come to every appointment - which I can tolerate BUT whatever she thinks doesnt matter or what I think its HIS descion - I have broken it all down into a language he can understand and it is now up to him and he understands what I have said so it is HIS descion NOT hers - sorry for that little rant but I guess somewhat understanably she is trying to wrap him up in cotton wool from a distance at 38!!!!
Anyway off to watch a little tv before trying to get some sleep a bad night last night he has a slight tickly cough that kept us all awake last night- and he still managed to be at work for 7am this morning and work the whole day - I fell asleep on the sofa at 11am - what does that say!!!
Becca - replied to you on "we talk " as well - just to say that early Dec when my dad was last admitted to hospital they thought he had a clot on his lung - it turned out it was pneumonia he had - he was given heavy duty antibiotics but recoverd from it fairly well. Will message you later to see how things are. Fingers crossed luv. x
Gayle - Hope you and Martin are ok - what are the cheeky vimto's? Sound lovely! My dad's still not that great - doing slightly better. I sat with him for hours yesterday trying to go through the alphabet - its a bloody nightmare seeing him struggle to formulate words. Might have to up his dex another couple of mgs (he's back up to 6mgs) but we'll see how he goes over the next few days.
Izzy - these two day hangovers are no good are they? poor thing! Glad to hear your hubby is doing well just now. Keep at it.
Carole - so sorry for your sadness - hope you can find some help and strength here. x
Emma - The upgrading sounds the business - if we were ever lucky enough to manage, that's what we will do! (doesnt look a possibility right now though) I didnt realise your hubby still works - that is SUPERB - long long may it continue.
I know the statistics are bleak for gbm but there ARE people out there who WILL surpass what the consultants and statistics say. Why shouldnt it be all of US? Anyway, on that thought girls - goodnight and take care! Love to all Lesley xxx
been reading but not posting the last few days - want to but can't seem to find the time - families eh ? We've got a bolshie 18 year old taking exams and a slightly edgy 10 year old who's getting very grumpy with his poor dad who keeps asking him the same question and stumbling over his words - Emma I sympathise it's difficult to be stuck in the middle on a daily basis
oh no -see ? I've got to go already- school run and there's so much to say... be back later
love to you all - hope you're feeling better Izzy - funny enough I had a liitle too much last night too -and it was only Monday night!!! Standards are slipping on Nurse Ratchet's ward -( hic)
ps Becca - would love to say something useful but I don't know anything re clots - hope your dad is better today xxxx
love to you all
Joan xxxx
Ps Gayle - Martin's tiredness -some thoughts- milk thistle, Co Q10 , Solgar's AC11, a good dose of Vitamin D and the Biocare Antioxident Complex might help - BUT it gets a bit expensive and i know we all struggle with that - and maybe you'll want to run it past your doc to get clearance on some - xxxx
First of all, Gayle - think I should apologise - haven't i been banging on about this before ? Do you ever think you're losing your marbles, girls? Honestly I'm not a crank, I don't mean to go on about supplements all the time - it's just I read so much about the necessity of keeping your immune system strong to cope with the treatment, that it has become part of our whole approach to this thing.
Taking a selection of supplements alongside conventional treatment is still controversial, I know- It certainly doesn't promise anything but what it does is make you feel like you're easing some of the side-effects of chemo etc and getting a better quality of life . It seems to have helped D with tiredness(he hasn't had any) and also kept his immune system strong - blood counts etc and no real sickness - Maybe it's coincidence but the more I read about the benefits they're now discovering in Vitamin D and Astragalus for example- the more i think -well what have we got to lose?
That being said, Gayle, I think I may have said it all before so forgive me !! But Izzy it maybe milkthistle , which supports the liver, could help with nausea and Gayle, a good Co Q10 supplement should help protect the heart AND help with ongoing tiredness .. Now I'll shut up
ps Emma - think the trial must be offering you a new hope so HOPE it goes well - those side-effects lists always make your hair stand on end xx
Love to you all
get some rest, get some fresh air (Sunshine = VitaminD!!!!!!) (lol - at it again - sorry)
Hello Carole, glad you've found the thread but so sorry you didn't have it to give you company and support when your husband was so ill - Your contribution, based on experience will be so valuable - hope, although some of us are relative new-comers to this awful BT business, we can all contribute back to you some of the friendship and support you still need - It's an on-going journey, isn't it?
Not been feeling too well this past couple of days keep getting nausious and bad heartburn and pains in the side gp done some tests no infection and he has put it all down to stress, can stress make you feel constantley sick? Martin away for a lie down, he had his reflexologist here today he really enjoys this it makes him relax so much, long may it continue.
Joan you have lots of good informations for us again I think I might try some milkthistle for myself see if it takes aaway this sickely feeling?
Emma those side effects sound frightening but every drug has them and most will probably never happen , if I was in your shoes I know I would go with the trial, hope you enjoyed your wine, a bottle slips over nicely very quickly think I might be getting seasoned.
Lesley glad your dad is a bit better hope he keeps improving we have Dr Alistair Rooney coming to see us tomorrow from the western general in edinburgh re the research does your dad see him? I am not on facebook might give it a go, Martine recently made me a bebo its quite fun I have got in touch with people I went to school with not seen in years its really quite good GayleF27 is my name on there if you have one.
Izzy I hope you feel a little better today and your not still hungover and hope your husband is well too.
Carrie thanks very much for PM , I will reply later on after I have made the dinner for Martin and Martine, hope you and your husband are well.
Hi Gayle Just a quickie tonight am shattered and need my bed - my 3 year old decided at 2am it was time to get up and didnt give in till 5am and then the alarm went of at 6am - oh the joys eh!
just wanted to say YES it can be stress - I have had bad heartburn and felt sick for a good few months - and it was put down to stress, I freaked and thought I had cancer for no reason other than pains, hearburn, night sweats, feeling sick, dr said its stress, gave me some omeperazole (like the lansoperazole hubbie takes to stop stomach issues when on DEX) and it has helped. they even put my back problem down to stress - the body deals with it in strange ways!
yes the side effects of this trial are scarey but reassuring we can stop whenever we want to - he has signed the forms now all we need is the MOT and them to sign, back there again tomorrow after I have had a heated meeting at my daughters school (thats another story along with meeting solicitors re my husbands employers - it never rains but pours!!!)
Bebo Gayle get yourself on Facebook - loads of us are on there!!!
izzy hope there was no hangover this morning?!?!
Lesley & Becca keep your chin up
Joan more posts on alternative therapy always welcome in this house - Goji berries is about the only thing I have managed to get hubbie to eat, he wont be allowed to take anything else now once on the trial but will be allowed food so keep posting!!!
FEELING MUCH BETTER TODAY HANGOVER HAS GONE YIPPEE AND HUBBY STILL DOING WELL!!!!
Joan you are so knowledgeable where do you learn all these things I must get some for my hubby does it make your hubby so much better. Emma those new drugs sound very scary sorry probably they wont be that bad if it was me Id probably give them a go. Hi to everybody else hope that you are all ok
Izzy - glad to hear your hangover has finally gone and hubby is good....im raising a cup of tea as a toast!
Gayle - as emma says, could very easily be stress-related - wouldnt be a surprise all things considering? Hope you can find something to help. Dr Alistair Rooney phoned my dad once but I dont think anything has happened since (maybe because he's been unwell lately. must check). Never been on bebo but I'll second again what Emma says - get onto facebook, its fab, ive just recently succumbed and maybe a bad idea as I am hooked! Nice to speak to people from here and see how "normal" - we really are....or not,(ME)!
Becca - Hope your okay luv - do keep us posted.
My dad managed out for a 5 minute walk to the end of the street so that is progress and Im delighted.
