Glioblastoma Why Why Why <br/>

Morning everyone

Hope everyone is as well as can be, on this lovely spring morning, not a drop of snow in sight only lovely blue skys and sunshine, it will probably snow later on lol.
Have been trying to log on for over an hour but kept coming up error, did anyone else have any problems.

Debbie, have been unable to retreive your pm, dont know why shall try again later, I admire your positivity, I feel exactly the same, there is always hope, and there are many patients who survive for many years with this illness, Martin gets his treatment at the Beatson in Glasgow our consultant is prof Rampling and our nurse is Mhairi Mackinnon, is that where you go?? Hope your father is doing well today.

Lesley, I hope your dad is doing well today and the injections are helping him, hope he is comfortable in the hospital and that your mum is ok today, she will miss him heeps over the weekend, keep us informed how he is doing.

Carrie, Thats good that D has an interest in something like that, that will keep his mind active plus also get him out the house on a weekly basis, Martin doesnt like to go out at all, you take care.

Emma, hope you have a nice day at school:)

Karen, thinking of you.

Joan, hope you and David and the family are all well. thinking of you too.

Izzy, Diane, Julie,CH and everyone else thinking of you all.

love Gayle xxx

Hi everyone

Well said Debbie. While they are with us there is hope and new medical advances are happening all the time, so who knows...

Lesley - Hope your dad is improving and the clot has been busted.

Gayle - I haven't had problems getting on the site, but I often have problems finding the last message anyone has posted. Sometimes it shows the last message as being one that was posted a day or two before. Does that make sense, and has anyone else come across that too.

I'm feeling quite please with myself. While B has been creative in the day centre, I had to take my eldest down to Brighton for a course. Our local Asda is next door and I ventured inside and manged to get round the whole store, and Matalan nextdoor without disolving into tears. Mind you, I didn't meet anyone I knew. I went on a buying frenzy, stocking up on bedding, towles and flannels for when B comes home. We have a tumble dryer, but sometimes I know that even that can't cope with the amount of washing we might have.

Sometimes the kindness of people really touches you too. I sent an email out to all our friends to see if anyone had a put you up bed we could borrow as B will be sleeping on a hospital bed downstairs and our sofa is too uncomfortable for me to sleep on for too long. B's work got in touch and have said they will buy one for us. I'm not quite sure where we will put it along with all the other stuff we will be collecting, but hey, who cares, a good night's sleep makes all the difference.

Off to have something to eat now before going to visit B.

Love and hugs to you all.

Carrie x

Evening Lovely ladies!!
Ive had a really bad day today but I promise not to rant as I may expode.
Lesley-Hope all is well with your Dad today sending you love and support

Gayle-just ahd a very sureal argument/mad episode with my Dad re trial options cant go into it too upstting for us all.
Fingers crossed he will betravelling from Sheffield to Scotland in a cuple of weeks to meet Dr James at Beatson ,hes doing the trail not Prof Rampling although Ive heard hes possibly the best in the business!!!
Spoke to Mhairi she was very positive and had a lovely manner look forward to meeting her in person.Maybe we will bump into you one day.Will let youknow if hes accepted.

Izzy-I know its a really difficult time for you both but try and keep positive think about that wonderful little baby growing inside of you..Im sure the scans will be ok.

Carrie-You are a STAR how did you make it round Asda and Matalan........I wish I had a badge maker because I would commend your amazing strength......you can never have enough towels.

Hope and love to you all........
Going to hit the chocolate BIG TIME!!!!!!!!!!!!!!!!
Debbie

Hello ladies

hope all is well with the gang - bit silly to say that, I suppose, but guess you all know what i mean

Lesley - so sorry to read about your Dad's predicament and hope that things are improving now for him. Thank goodness he went in when he did and is in safe hands.. Fingers crossed he'll be sorted soon and your Mum and you can have anxieties allayed - It never seems there's clear water sometimes - always something scary to have to deal with - It's just as well we're learning some kind of resilience ... I think we're all learning to be tougher than we ever thought possible .. Much love to you all xx



Izzy - STAY CALM!! I shouldn't have put that in capital letters - it'll stir you up!!

Can we all be honoury Aunties?? that'll cheer us up ...

Hope Blair is feeling better and you can rest up a little and enjoy being together and try not to worry too much about the scan - sorry, it's easier said than done but we're all rooting for you and sending you a big hug xx



Carrie - very glad that B is coming home to you and that you had that kind gesture from his work- It does make you realise that people care and want to do something to help - It helps to break down that feeling of isolation that you can get living inside this BT bubble ... I hope the Art therapy proves really satisfying for your man - It can be such a good way of expressing yourself especially when other options are limited - I know David's drawings at the moment seem to be saying something about him - they're very poignant and still and sad and quite deep and I think it's partly because he has trouble with words and language now - Drawing seems a simpler way to express things - Hope it helps B xx



Gayle- have you thought about Art therapy for Martin ? - now I know he'll just probably sit drawing cars...... No seriously - if he's indoors a lot and not wanting to go out - a pad of paper and some pens or paint might be interesting to him, even like keeping a diary with some doodling etc ...Maybe it might be good for you too - you're a very expressive person. All this strikes a chord because it's what i do for a living and if i wasn't painting etc at the moment (when I get the time ) I think I'd go batty .. Perhaps we all need to write our thoughts down even if it's something no one else gets to see.. See how much good it does us just coming on here to write things down..

Anyway - how's the holiday plans coming on ? that'll do you all the power of good xx



Karen - just wanted to add sincere sympathies to the long list sent by your friends on here who're thinking of you and hoping you'll be ok - Your dear Mum will know how much you loved her and will still be there to talk to - I know i still talk to my mum who died nearly 4 years ago and I really feel she sends me strength when I'm struggling with things now. Hope you're finding comfort in many lovely memories and you will find memories of happier times will take over from the thoughts of these last sad weeks - the sadder images fade as you remember golden times - This is what I found . Much love to you xx



Emma - have i said this already? What fantastic news!!!!! yes I probably did - (bloody short term memory loss !! ) Hope the man with the everlasting battery pack is feeling chipper - just try and stop him putting in for overtime - lol !!

Has the vino been flowing since you heard the news ? I can't seem to pack it in like i did - had one glass with dinner and i've been half asleep ever since..

Anyway- onward and upward - hope the trial will just get better and better - it must be just so overwhelming to think that, at last, things are happening - xx

got to go to bed - wot! Friday night and bed by 11????!!!!! Wot's happened to the life we knew??!!



Sorry to miss out on a message to all - Diane, Yellow sunshine - hope things are ok for you and your men

Debbie - Hope your Dad's ok and his mood is better - News like he had is shattering but there's always hope that things will turn around. Glad you had a rant - and how could you offend anyone talking about 'Hope' ?? It's a shining light in the gloom and something we've all got to get up in the morning and focus on, and think of last thing at night when we lay our poor old careworn heads on the pillow, and if anyone forgets to remember it , then the rest of us will be here to remind them and give them a hug and a bit of support - Get feisty and don't be sorry .. It's all about keeping the faith and holding each other up when we start to flag - and not thinking we're alone in this - i know I'd be lost without you mates on here ...

Sleep well all - much love and a happy, peaceful weekend

Joan xxx

Joan-Thanks for your support .Ive eaten my own body weight in chocolate and feel much better....
Your so right we do need hope in this dark place we are all living in The chocolate has recharged me and Im back on track
Sending all old(not literally ladies!!) and new members maybe reading this message Hope Hope and more bloody Hope
Debbie x

HI everyone

7.35 on Saturday morning and I'm out of bed. How times change. Before the BT 9.00 was early for us! I'm waiting for the new bed to be delivered. Sometime between 7 00 and 3 00. I hope it turns up earlier as I want to get to B as soon as I can.

Yesterday he was very tearful. Saying he wants to go home. Now it's the weekend and things grind to a halt re getting equipment delivered etc. I think he now knows the implications of his BT and that he is very poorly. He said that he wants to get home before he dies. What do you say when the love of your life says that to you?

He was also telling me what he would like me to say to his close friends when he'a gone. I've already warned certain people of what might happen and they have either visited or will be soon just in case.

They all say I'm so strong. I am when I'm with him, but if he's not around I'm lost. Oh cr*p I hate BTs.

Rant over. I'm off to have a good cry.

Carrie x

Morning folks,

Just a real quickie - we've all slept in and amber has missed her disco dancing! Have to zoom and try and get her to ballet and tap - look and feel like Ive done 10 rounds with Mike Tyson!

Carrie, my heart breaks for you...must be unbelievably sad to hear B talk like that. What can you say to that? I really dont know where you would begin. Big Hug .

Well, my dad got home yesterday - a bit p******d off to tell the truth, feel it was a bit like, well we need a bed so off you go. Hilhs blood clot is all the way up to his groin and his leg is still huge and purple - has been given injections in the stomach to thin the blood and apparantly will need these for ever? have a district nurse coming in to do them this weekend but the doctor said it would then be down to my mum to do them? Not in a good mood at all today - oh dear! Carrie Im with you for that cry!

Sorry this is a down post, but love to all you lovely people, in too much a hurry to mention you all but you all know who i mean! and hope the weekend is kind to you ALL,
Hope to get back on soon.
lesley xxxx