Glioblastoma Why Why Why <br/>

Hey folks,

Not been on for a day or so....was nursing a major hangover from a fundraising event I was at on saturday night (have to realise sometime soon that binge-drinking at 36 is not big and its not clever....or pretty!!!).

Greentree - hallo and welcome, very sad that you find yourself here but it will hopefully help you in the same way it has for me - it helps enormously knowing there are people who truly understand how you feel. It must be so hard living so far away from your dad...he'll obviously be so pleased to see you when you come back. Its my dad who has gbm too....he's 59 and was diagnosed last August. take care.

Debbie - how great that your mum and dad have managed to get to Tenerife - that's such brilliant - i always love when I hear of people managing to get away - I thought we had nearly persuaded my dad to go for a week for his 60th but this blood clot has put paid to that - there's no way he'll fly now.

Jay - big hugs to you and Jon - how very very sad and unfair to watch somebody so young deteriorate. you sound like you have a special strength from your posts. hope jon is comfortable as can be.

Joan - I really have missed something here ....whats your website...I need to have a look!! I take it your away for a break....well enjoy it girl!

Izzy - good luck for yours and blairs scans - are they tomorrow and Thursday ? hopefully you'll get your first photo of your wee bubba....that'll be just magic to see!

Carrie - hope your doing ok? Have you managed to get your man home yet?

Gayle - is Martin at the hospital soon? Hope you've been stocking up on suntan lotion!

Emma - great work you've done with this charity bike ride - you should be so proud of yourself. One of my best mates is running the London Marathon and were giving the sponsor money to the Samantha Dickson Brain Tumor Trust - she asked me to choose a charity and I thought that was a good one.

Just want to say good luck to my pal Becca who's dad is having his scan tomorrow too.

Well my dad's leg is still huge but the purple colour has now all but gone (I ordered him a pair of slippers from a website who specialise in extra wide slippers but even they dont fit!). The district nurses have been lovely and have came in every day and I have a feeling there's no way my mum will do these injections into his stomach...time will tell but i cant see it happening! If it wasnt for this blood clot my dad would probably be feeling fairly okay just now - he was even attempting scrabble on-line today......from a man who didnt know what the alphabet was months ago this was a good achievement.

Anyway, better go and watch corrie before I ramble on anymore!
Lotsa love
Lesley xxx

Hi folks

B still not home. While I was with him at the hospice this afternoon I had a call from a member of the community nursing team wanting to ask me some questions. One of which was, as B’s bed will be downstairs and we have a gas fire in that room, do we have a Corgi certificate for the appliance. She also asked if she could come out and have a look at the room as a hoist had been requested and could she come on either Wednesday afternoon or Thursday. I was furious. I said no one had mentioned about needing a Corgi certificate and we have the boiler and fire checked regularly under a British Gas agreement. She then said it might be ok if the appliance has been checked within the last year, the trouble is I can’t find the paperwork to say that it has. When she mentioned that she couldn’t come until Wednesday at the earliest, I said that I hoped she could call tomorrow as we want to get B home as soon as possible, so now she is coming tomorrow afternoon. If she makes a fuss about the safety of our gas appliances I think I will just come out straight and say that my terminally ill husband, who has possibly only a few weeks left to live wants to get home as soon as possible so that he can spend as much time as he can with his family.

AAAAAAAAAAAAAAAAARRRRRRRRRRRGGGGGGGGGGGGG!!!!!!!!!!!!

That’s got that out of my system.

Debbie – glad your mum and dad are enjoying their break. I hope you manage to have a productive week finding out about trials and that you manage to meet up with a few of us.

Lesley – good to hear that your dad is still comfortable and now enjoying games of Scrabble. Also good to hear that the district nurses are coming in, your mum shouldn’t have to give injections.

Gayle – I bet you’re all counting down the days to your holiday. I bet Martine is getting excited. You’ll have to put some photos on your profile page when you get back. I keep meaning to ask, has Martin still got six cars? How on earth do you manage them all? Two was enough for me.

Diane – hope you and your hubby are ok. Isn’t it hard when the one person you used to discuss everything with now isn’t capable of thinking the way they did before. I also find that there are things I would like to talk about but now can’t because I don’t want to worry B.

Jay – sending you and Jon lots of love and big hugs. I imagine that you and I are in similar places at the moment and I think of you a lot. What we are all going through is something that is just dumped on us and I don’t think anyone who hasn’t been through it can possibly imagine what it is like to live with it day in and day out. That’s why this thread is so important. We can just be ourselves and talk about the horrible things and not have to pretend to anyone.

Joan – I’m sure you’re not logging on at the moment, but I’m thinking of you and hope you’re enjoying the mistletoe?

Izzy – I’ll se thinking of you both tomorrow and keeping everything crossed. Hope you both manage to get a decent night’s sleep. Sending you lots of hugs.

Greentree – I was just wondering what some of the others had asked and that was where you are flying from? And also where are you flying in to? I hope your journey goes well. It will be lovely for you to be with your dad, just a shame it’s under such circumstances.

Karen – hope things aren’t too awful for you at the moment. Thinking of you and sending you a big hug.

Ooops! I’ve rambled on again, sorry folks!

Hello to anyone I may not have mentioned already. And as everyone needs a hug now and again, sending a big hug to all of you.

Carrie x

Hi Green Tree

We spent our honeymoon in New Zealand. Mostly on the South Island but we spent our last four days in Wellington. My profile picture was taken then. Are you flying in to Heathrow or Gatwick just being nosey as we live very close to Gatwick.

Safe journey

Carrie x

Lesley – That fund raising sounds good, I have not had a drink for over a year!!!! I would be a very cheap date now. Love to you

Gayle – Not long now!! I am hoping you have a fantastic time and cant wait to see pics and hear all about i

Izzy – Hope all has gone well... fingers are crossed

Hi everyone

Been to the hospital today, where we met Becca and Diane and their lovely familys, Becca so sorry about your news keep your spirits high and also your hope. xx

What a carry on we are having now getting this insurance sorted for the holiday, the company says the hospital must fax them first, the hospital are saying the company must fax first and neither will back down, its been a bloody nightmare, think we might have it fixed with another company now fingers crossed, then we need a letter from the consultant saying Martin is fit to fly again they wont issue it without a fax from the airline who wont let Martin fly without it, so much hassle I tried the gp but he says he cant confirm that Martin is well enough to fly it has to be the gp. Today we were to get round 6 of tmz, Martins blood was fine as usual, but because we fly in 2 weeks they say its too dangerous because of infection, if we had been told that I would hve booked the holiday for a few weeks later, so now this is the end of the treatment just too play the waiting game now.

Carrie what a difficult time you are having bloody corgi certificate, what next!! Hope B gets to come home with you soon to cheer you all up love to you both xx ps still got 6 cars wee have a huge drive thank god, 4 of them are off the road couldnt afford to tax them all, its a nightmare starting them and keeping the tyres inflated.

Greentree, hope you have a good flight long way to come with a wee one.

Lesley glad to hear your dad is doing good and that your mum doesnt have to do the injections, its not like you to have a hangover lol after the day I have had trying to fix the insurance I think a vino might be called for tonight. xx

Debbie, hope your not worrying to much about your parents.

Izzy good luck with the scans is it this week?

Emma, you are doing a great job with fundraising where do you get all your energy I think we should start and call you Mrs Duracell xx

Joan hope your break is going well xx

love Gayle xxx

Hello All.

This is my first time posting. I have been reading all your posts for the past month, and want to let you know how helpful and inspirational you all have been to me.

My father is 76 years old, and is in final stages of Glioblastoma Multiforme..class 4. He was diagnosed late last year, and has debulking on Feb 3. He had decided before the surgery no chemo or radiation, but to live the time he had left in peace. He hasn't bounced back from the surgery at all, and his prognosis has gone from 6-12 months when we left the hospital, to maybe 4 weeks as of now.

When I feel that no one really has a clue what we are going thru, it helps to get online and "visit" with you all, even though I haven't participated in discussions. I was very blessed the day I stumbled upon this website in searching for information on this cancer.

I hate that my vibrant, active father who was driving a school bus up to November, is wasting away, and didn't have the quality time he so wanted to have with my mother before he got to this point. I hate that I seem to know more about this cancer from the internet than the Hospice nurses that come to call once a day.

Thank you all for the comfort, and information you constantly provide me. Just knowing I am not alone...helps sometimes.

Lisa....far away in Illinois