Glioblastoma Why Why Why <br/>

Afternoon everyone

Lesley, you have really put me in the notion for a chicken tikka garlic masala, with rice and garlic nan and some chicken pakora o start, but we are having honey roast ham potatoes and broccoli boring eh!! Hope you have enjoyed your day at the park with the ducks Amber and Joe would have enjoyed it eh. xx

Carrie, hope you have a great weekend with your friend from new zealand, that must be a record journey for a weekend visit!! Lucky you with the Indian my mouth is watering. We dont go on holiday until tuesday but just getting organised almost done now. Haggis supper is deep fried haggis in batter with chips very fattening but delicious, smoked sausage is sausage thats been smoked again lovely. xx

Becca, sorry about your insurance problem, would you not consider going away to western europe you find getting insurance alot easier?? Martin would love to go back to the states but because of insurance we are going to spain. Good on you for doing your run, the beer and pizza sounds more appealing to me or a walk round Buchanan Street. xx

Jay, hope you are taking care and you have lots of support.

love to everyone else.

Gayle xxx

Hi there, this is really hard but has been made a bit easier reading all ur stories, I don't feel so alone. My Rob who is 59 was diagnosed in May 2008, operated on a week later and commenced 6wks of RT & Chemo a month after release. We thought he was going to be ok, but on finishing the 6wk course he was then to start a monthly course of chemo (for 6mths) which made him really ill, he was called back to neuro clinic where we were told that it would be better for him to come off the chemo and have a bit of quality for the time left, after I picked myself up from the floor I asked what they meant, and it was then, 4mths down the line, that we were told it was terminal and that he had 12-14mths from diagnosis.

We had to then go back and tell our boys that the info previously given was wrong and that they were going to loose their Dad. Both have gone into denial, the oldest boy (36) gets annoyed that his D can't do what he used to do (they used to fly model airplanes) and can't seem to understand that Rob is constantly tired. The younger of the 2 is telling everyone that his D has retired??

Neither of the seem to understand what it is like to live with this on a daily basis, Rob is tired all the time, spends days in bed, and when he does get up he sleeps in the chair most of the time. He can be talking to you one minute and the next his eyes are shut. I feel like I'm already on my own but without the freedom that comes with it, was that nasty to say that?

Thanks for listening and may God be good to all of you for a while longer.xx

Evening folks,

Gayle - hope the packing is well under way - not forgetting the factor 50 and flip flops! did the ham go down well? I've just had spag bol but have to cook it with loads of worcester sauce through it and grated cheese on top - yum - now having ONE glass of vino - you were right - i really couldnt manage the whole weekend, not even party of it.

Becca - 20k? your putting me to shame missus! I put my gym membership on hold until July (hate the gym but could in a past life manage a couple of body combat classes!) wish i could find the time, it helps me escape mentally. ah well. Sorry to hear about the SA plans but as the others say, would be good if you could get him somewhere close..Spain or France? Nice your mum and dad managed Oban. I said to you before, my dad hardly has the energy to get over the front door - its very worrying, the tiredness is crippling for him and i dont think its right after getting a half decent scan result. Hope your sisters wedding plans are coming along...something nice for your family in these hard times.

Reland - Sorry you find yourself here but welcome. Its my dad who has gbm, he is the same age as your hubby and Im the same age as the oldest of your sons. Your certainly not nasty in what you feel - i think its very understandable - my mum has said she "lost" Derek 7 months ago - he is sadnly not the man he was, both mentally and physically. Its a cruel cruel disease but i hope you can find some comfort among people who truly understand.

Carrie - hope your still enjoying your visit - glad to see Gayle filled you in on the haggis and smoked sausage suppers - your really missing out I tell you! It was lovely feeding the ducks, although i did make a hasty retreat back to the car at one point when the huge ducks came towards me...left my mum and Amber to it!! - it was a beatiful day - Joe missed it all, he was sleeping in the car!

Emma - Hooray your back! good that Matthew has improved - how brilliant getting all that camping gear - its so nice to think there are lots of people willing to help.

Love to all x

love
Lesley

Hi Emmasercia & Reland

My husband was diagnosed in October 2006 with a GBM4 and died 1st August 2008. He had 3 operations, radiotherapy and chemo (8 sessions). He after the second operation changed, like your husband would fall asleep in the chair or be in bed. The last operation in September 2007 changed his character, he would be anxious about silly things and yes it was like having another child in the house. I feel guilty because sometimes I was so tired my patience was very thin. I loved him so much I just wanted my man back as he was. It is very lonely without him, I miss discussing all sorts of things and having him do all the bits and pieces round the house and dealing with financial matters.

Thinking of you all - God Bless

Carole (Cazzam) xxx

hi all

Emma, glad to hear Matthew is doing better today. I know what you mean about having an extra child around! My eldest is 17 so I feel ok about leaving hubby wiht him for a short time if I'm just down at the local shops, but any longer than an hour or so and I'll get carers in - I worry in case he has a seizure and the kids would panic, and have difficulty dealing with the consequences of the seizure. Regarding feeling alone - yes, very much so - I used to worry about how I mihgt cope with everything - all the practical stuff I mean - if hubby was no longer around, then I realised I have been coping with everything anyway for the past year!
Reland - welcome - sorry you have to find yourself here. Its a shame the boys are reacting this way, hopefully they just need a bit of time to come to terms with it all. It must be hard for you though as they are the ones you might expect to be supporting you, and you them, at this difficult time. I'm wondering why you seem to have been given wrong information at the start, that must have made your recent experience so much more difficult, you've not had time to take it all in. please keep posting, it really does help.
I seem to have started a discussion on the menu at chippies - well we have a great chippy whic also sells curries so we are spoilt for choice. also he does free pakora if you spend a tenner so that's always tempting! Carrie, I wonder if your haggis came from a butcher in Portobello, there is one there that is famous for its haggis - we used to always get ours there as my grandmother lived there. Talking of which, Lesley, I recall as a child feeding the ducks in Hogganfield Loch and the Loch up by Arthur's seat ( i may be getting the names mixed up)- happy times.
goodnight all
Diane xx

Hi Reland. My husband was also diagnosed in 2008 and we were told to prepare for the worst. It's been really rocky throughout the radio and chemo. The tiredness I can relate with. It's so random; one day he's on really good form and then a few days where, like you I just watch him sleep and watch and watch, because sometimes it's such a quiet sleep.

I can't compare too much as at least we've survived so far and the final chemo is this week. I really feel for you as this could be me. Have one son who's a teenager and is in denial.

I have problems posting as feel very much as if I'm joining a group that's so established. Not their fault, I've only just found the site. The loneliness is the most difficult part.

The daily bit is the worst, I know as it's exhausting, depressing and so cruel as you watch somebody who was so vital disintegrate in front of you.

Hi everyone

I said I’d be back later and here I am. We’ve had a lovely day with Max. He visited briefly this morning and then went off to Brighton to do some shopping. Good old M & S, he says you can’t get suits like theirs in NZ. He then returned later and we got our curry. It’s a while since we had one and it was scrummy. I think a holiday to Scotland should be on the cards soon so I can have a tour of your chippys. Can you still get deep fried Mars bars up there?

Becca – sorry to heat that your parents wont be able to travel to SA now. Good for you with your running. B used to run, in fact we should have been heading to Paris at the start of April as he has a place in the marathon. Oh well…

Gayle – honey roast ham, potatoes and broccoli sounds much tastier than a curry…

Reland – Hi. So sorry to hear about your husband and that your boys are in denial. I know it’s hard for them to accept but you really could do with their support now. My tow, much younger boys have been a big help to me, but they are around all the time and so I suppose they see what we are up against. I know what you mean about feeling on your own. B is totally incapable of making any major decisions. I now have to do all the things he did, like sort out the bank accounts, deal with the car etc. You’ve also lost the person you could moan to about things. There are lots of things I can’t talk to B about now because I don’t want to worry him. Keep posting, everyone on here listens and is so supportive. I don’t know where I would be without them.

Emma – camping gear. Is that for the bike ride? Hope you found something yummy to eat today. I am subjecting everyone to my cooking tomorrow. The cooker and I have a bit of a love hate relationship, sometimes things work, sometimes yuck! Wish me luck for tomorrow. It must be so frustrating for you that Matthew can be so independent in some ways and in other ways needs to be looked after, especially as people on the outside must see the independent version and not understand what you have to live with. 2 ½ years is an awful long time to live with the ups and downs that go along with BTs. I’m sure that if at the beginning of that time you had been presented with a timeline of what would happen to you over that time you would think that you would never be able to cope with all that you have come up against, but you have and you are amazing for doing it. Some people find a few minutes on a roller coaster hard going.

Lesley – shame on you, leaving your mum and Amber to the mercy of the ducks. What kind of a mother/daughter are you!!!!!!!!!!!! Just curious, do you have any brothers or sisters? Hope your dad is feeling a little less tired today.

Carole – thinking of you and hope you’re bearing up.

Diane – I hadn’t thought of it before either, but as you said we are already having to cope with things on our own, so if we can do it now…

I’ll ask Tim where he gets his haggis from and let you know. When’s your eldest 18? My youngest is 18 on 30^th March and I just can’t get my head around presents. I need to start thinking soon or I’ll run out of time. Thank heaven for internet shopping.

Jay – hope the preparations for Jon’s celebration are coming along well. I have a feeling it’s going to be a wonderful occasion.

Izzy – as everyone is saying, please keep in touch as we’re getting worried as we haven’t heard from you for so long now.

Julie, CH, Karen, Joan and anyone else I may not have mentioned (I’m rubbish at remembering names) thinking of you all and sending every one lots of hugs.

Currie, oops sorry that should be Carrie he he! xx