Glioblastoma Why Why Why <br/>

FormerMember over 16 years ago

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Glioblastoma

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.

FormerMember over 16 years ago

Morning all
a very speedy post this morning got the school run to do but just wanted to leave this link for you Debbie its of the latest trials in the uk that are recruiting at the moment for glioblastoma. Obviously they all have criteria to be met but its worth a look. x
http://www.clinicaltrials.gov/ct2/results?term=glioblastoma&recr=Open&cntry1=EU%3AGB

to everyone else will be back on later thinking of you all big hugs

emma x

FormerMember over 16 years ago

Hello Everyone,

Busy week for me with Jon's relations here from Canada for a week and lots planned.

It was so lovely to see Jon with his cousin as they have such a nice connection and she is able to be with Jon and not drain him, which is so very nice.

Debbie, sorry to hear about your dad, I hope you are able to find a trail that is suitable. Thank you so much for your kind words and your right just because you have skills it does not make this any easier, it hard because it is in you to to reach our to everyone around you in this situation and to feel for and care for them ie his family members and be there for them. Yet all the time it drains me and takes me from where I need to be, I am not able to protect myself as well I once did, and I need to say sometime soon that I need my strength for me, Jon and the girls.

This site is giving me something and I thank you all for that... a sense of unity and of beauty inside this pain in this bloody unbearable situation and I am thankful that I am not alone yet wish that this was different for us all.

Lighter note!! Jon managed to communicate that he would like to visit the new 60's, 70's and 80's Nightclub in town!!!!!!!!!! So yes, a new mission... not quite sure how I am going to do it but I can't deny him anything....... so we will give it a go... after we have recovered from the meal out and the journey in the pink limo....... because as I said before I am a little crazy, and I do think it helps.

Lots of love

Jay xxx

FormerMember over 16 years ago

Morning All

Debbie, so sorry to read your sad news, this is really a horrific illness sending my love to you and your family, keep praying and your hope alive. xx

Joan and Carrie, hope you two ladies are bearing up, my thoughts and prayers are with both of you too. xx

Diane, good to hear from you, spoke to Mhari re trial yesterday, she said there are various trials going about but as Martin is responding well with tmz, no need for us at the moment, hope all is well with you and the family.

Emma, hope Mr Duracell, you and the AA's are doing well, hope your not too tired organising the cycle. xx

Lesley, hope all is well in Edinburgh are you ready for the snow? xx

Izzy, hope you and Blair and the wee bump are all well. xx

CH, hope all goes well for both of you today. xx

yellowsunshine, good that Jon is enjoying his relatives being here, it does lift Martins spirits when he gets visits and phone calls, enjoy that limo.xx

Karen, how are you and your mother?? xx

love to you all and anyone that I have missed.

love Gayle xxx

FormerMember over 16 years ago

Hi everybody

First of all I'd like to thank you all for your good wishes for Blair and I we are both having trouble believing all this what a year it has been. Well next week Blair goes for his first scan I am really dreading this hope all shall be well what happens at the scan and how long till we get the results anybody know? The week after that we go back to the hospital to I get my first scan what a dilema well all I can say is I need both results to be good Blair is still not 100% yet so I am keeping everything crossed.

Well done to Emma Gayle and Lesley with your good news
Joan Carrie Debbie and Karen hope it is better news for all of you
Hi to Diane Crazyhorse jay and everybody else

love

Izzy

X xx

FormerMember over 16 years ago

Hi Izzy
what a year indeed! i can only tell you what happens to M when he has his scans - not sure if the vary or not!!
Bascailly he has a canular (cant spell!) put in and they inject a dye through this which shows the tumour up on the scan clearly. The whole thing takes from 30 mins to 45 mins. Apparently they listen to music whilst they are being scanned = m usually falls asleep!! Getting the results varies from hospital to hospital - they usually like to have a meeting with the other drs to discuss them - the 'norm' I would say is about a week - or your next appointment if sooner.
Hope that helps!

Just had some sad news - matthews great aunt who was 82 has passed away she was diagnosed with a brain tumour 3 weeks ago and declined treatment so we never knew exactly what it was. But although this may sound hard she was 82 and I'm sure many of us would take getting to 82 - thats not meant to demean anyone who has this disease who is older its just that i wish we could get to that age as well (god now i have said that it sounds so bad x PLEASE no one take offence to it xxx- I hope that makes some sort of sense!!! bit of waffle thrown in for good measure!!

Gayle hope your writitng lists gallore ready for your hol -

CH - lets hope all this good news carries on eh! xx

lesley hurry up its your turn on scrabble!!! xxx

Joan big hugs to you too xx

Debbie thinking of you - try and stay positive - ur doing an amazing job x

Jay - get your lycra out sounds like you've got some serious dancing to do!!!

Karen - hope your hanging on in there too xxx

to everyone else big hugs all round

take care everyone - keep hugging as my good friends say xxxx

FormerMember over 16 years ago

just saw this and thought it might be of interest to some of you looking to go away - not sure what prognosis they cover but worth a call - copied it from insurance at last! have never heard of the company but sounds good!

carol60 said:

I have just got my holiday insurance through MIA Clear 2 GO Telephone number 01268782745. I spoke to a lovely lady called Gemma. They will insure anyone with Cancer and there are different rates for where you are travelling to. They will only insure you two months before you travel, but if you are going within the two months that is fine.

I paid £264 for myself ( Breast Cancer and Arthritis and my husband Arthritis and Spondulitis, this is for 3 weeks Carabean and USa Cruise. So this is the best deal we have had. I have been so down at times as these companys ask for all your information then tell you " yes we will insure you but not for the Cancer" I am sure many of us have experienced this, you feel like a Leppar !!!!!

So hope this is of some help to you all.
Love Carol xxxxxxx

FormerMember over 16 years ago

Hi to you all!!!
Thankyou for your kind words and support ,Im so sorry we are all in the same boat but, its nice to be part of such a supportive group,9knowing that Im not the only one fighting this bugger of a disease!!

Sending you all tonnes of love and support for yourselves and your loved ones!!

Jay -many many thanks for the trial thread I will check it out in a moment!!Hope you have a fab time at the nightclub,what will Jon ask for next??I think its great and hope the evening is full of fun and laughter .

Izzy-Sending you both hope and happiness for your scan results,Try not to worry about it too much.My Dads came through 2 days after he had the first and 1 week after his MRI second time around.

Gayle love to you both ,thankyou for your kind words.

Good news I cried all night and Ive cried all day and wow do I feel better now!!I guess it just needed to come out.
Feeling positive ,ever hopeful and back on track to fight the fight!!

Sending you all positive vibes!!ha ha dont know if you can get them from Sheffield!!!!!

Night all
Debbie

FormerMember over 16 years ago

Hello ladies

finding it difficult to post right now - so many interruptions in this madhouse!!

My mind has been all over the place since our horrid scan result and I really feel tired so excuse me if this is a bit disjointed!!

Izzy - got to say GOOD LUCK with the double scan business - you must be so nervous - Just keep calm and remember first MRI's after treatment can be inconclusive - even misleading - and are often just a base line against which they can compare the ones that follow - Be brave!!

Hope you're feeling well and not too many collywobbles with the little 'bump' xx

CH - such good news for you and your man ... Like you so often say, hope is an essential part of any strategy to deal with this horrible old BT thing and 'hope's fulfilled' is a fantastic reward for all that positive thinking. I know you have your dark moments - the middle of the night job- but you always manage to sustain an enormous sense of humour and also big compassion for everybody else, especially the new posters, so GOOD ON YOU, GIRL as they say (whoever they are...?!) xx

Debbie - just wanted to say how I've felt for you on your last two posts - A bad scan is a bastard - there's no other word for it - Like you with your dear Dad, my hearing that David's treatment has effectively failed so far left me desolate- When you're the one who's trying to be strong , talk positive, keep their spirits up, it's really desperately hard to keep the right face on, the one that your loved one needs you to wear to keep them hoping...

The crying sometimes seems like it's never going to stop when I get out and away from the house - up on the moors with the dogs or whatever- but i agree - it does help - and after a really good cry and a howl, I seem to become calmer and stronger again - Unfortunately as Emma and some of the others have said, it's when you start crying at inappropriate moments that it gets to be a problem..! In shops, in the street, when you're trying to cook tea... ( High salt levels in the pancakes this year....)

I hope your Dad's spirits lift - The PCV is supposed to be a bit heavy in it's side-effects and anti-nausea drugs are a must, I hear ... but our consultant says it can be effective where temozolomide fails - it's older and a bit steam driven but she says it works on 1 in 3 people that tmz can't help- Is your Dad on any supplement that might boost his immune system and help him cope with chemo side-effects, blood counts etc? It might also boost his sense of well-being generally.

Good luck with the next stage. Be thinking of you xx

Actually, thinking of you all, girls and hoping life is sending you some good fortune for a change. i think we've had more than our fair share of sadness and it's so good to hear the positive results some of our gang are having. Love and strength to us all, I say and time for another one of these......

To you all, Gayle, Carrie, Lesley, Jay, Debbie, Emma, Karen,Izzy, Diane , CH and anyone else dropping by-

A Bloody Great Big (((((((((((((((((((((((((GROUP HUG))))))))))))))))))))))))))))) !!!!!!!!!!!!

Joan xxxxxxxxxxx

FormerMember over 16 years ago

Hi all

Joan, lovely to hear from you, your still giving such good advice to everyone despite the bad news you got yourself last week you really deserve a (((((((((((((bighug)))))))))), I really hope you are coping a good cry will defenitely help get it out your system, Martin has being doing alot of that recently, thinking of you and David when does he start the pcv? xxxx

Debbie, love to you to at this hard time for you.

Lesley, did you get the snow, it still falling here on and off fell most the night nice and white here. xx

Emma, Izzy, Diane, Karen, Jay, CH and everyone else loe to you all

Gayle xxx

FormerMember over 16 years ago

Ravi

If you are reading this thinking of you, hope BJ is doing alot better

love Gayle xxx

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