Glioblastoma Why Why Why <br/>

Emma

I echo Lorraines words, the pain you are suffering at the moment and you still posting and showing your concern for us all, like Lorraine says we shall be here for you hun anytime night or day, you have my numbers call me anytime you need someone to talk anytime at all night or day, you support on here has been incredible, both you and Mathew have been such an inspiration to us all and will continue to be, love to you Ella and Sasha, please keep posting as you are such a big part of this thread, when ever you feel up to it, the weeks and months ahead shall be difficult but your strength and love for Mathew and the girls will get you through it ((((((bighugs))))). xxxxxx

Lorraine, sorry to read that you are chocked with the cold the last hing you need..........not, like you said, I feel as if I know you all so well and we have not even met this dreadful illness has brought us all so close, just wish we had all got to know each other under much better circumstances. xxx

Lesley, hope things are better for you guys s in the capital just took my amazing tabs again so lets hope for another good nights sleep. xxx

love to everyone else.

love Gayle. xxx

Hi all

Lorraine, sorry to hear your mum is less well again. You must be exhausted with all the running around you do. Do try to get some time for yourself and Scott, or just for yourself(!) when you have your well earned break next month. Maybe a wee day trip somewhere nice? It really does help to recharge a bit, you will feel better and more able to keep on coping. Just forget about that neighbour, it’s not worth the worry.

Susan, I do hope they are able to improve your dad’s mobility in hospital. Don’t feel guilty, you can’t be in two places at the same time, much as you’d like to ! What is it with parents and mobile phones – I gave my mum one about a year ago, she still can’t work it properly and keeps sending me blank text messages! As she keeps it just for emergencies she’s not using it enough to get the hang of it.

Hi Debbie, so sorry to hear of your dad’s hospital admission – it must be so difficult not being able to be there – how much longer must you be “quarantined” for?! I hope he is feeling better after his transfusion and is less breathless today.

Hi Lesley – have I missed something supernatural? Sorry your dad’s leg troubles seem to be taking a long time to heal, no wonder he is fed up. But getting out in the car is a start. Its lovely just to sit and watch the sea, that’s one of the beauties of staying where you do, it’s never far away. Hope you get the childcare sorted, its just another worry isn’t it.

Hi Gayle, hope you get a good sleep tonight again. Good for Martin, getting everything organised – no wonder you are proud of him.

Hi Emma, lovely to hear from you, hope you are not reading this but have managed off to bed. What we would all do to take away the pain….. xxxx

Things here are not great, Hubby continues to decline slowly. He is completely dependent now, can’t see, has no movement in his legs and seems to be losing power in his right arm too. He has certainly no fine movements like grip and has been needing fed for the past couple of months. He has also become incontinent just this past weekend. He is quite confused now, less aware of the world around him and has limited speech so it’s difficult to know what he needs or wants. Sorry, it sounds bleak and it is, I’m just telling it how it is for us - I know that thankfully its not like this for everyone. Actually I feel a bit relieved that he is less aware as it was harder before when I think deep down he knew what was coming but would never discuss it or entertain the possibility he might not get better. I have great support from the GP and district nurses and now the Marie Curie overnight service too. And I have an army of friends and neighbours ready and willing to fetch and carry my kids anywhere and everywhere they go, without whom this would be so much harder. Still taking one day at a time.

Goodnight all

Diane xx

Morning everyone.

Well woke this morning to my amazing hubby having got Martines packed lunch ready again and breakfast ready for us all, I never even heard him get up, slept right up till 8am, we are now getting ready to go into Kilmarnock for an hour or 2 Martin loves to get out now, which is fantastic!! Also today he is going for his first haircut since the treatment started his hair is getting long around his ears now lol, both him and Martine are going after school today.

Emma, what a fantastic lady you are, you truelly amaze and inspire me, it was so nice to speak to you last night, your concern for everyone is so touching with everything that you are going through at this sad time for you, Mathew will be there with you and be so so proud of you. I am here anytime night or day for you only a phone call away, one day we shall meet. Hope you got a lie today you deserve it (((((((bighugs)))))) to you and the girls. xxxx

Diane, what a difficult time for you, it must be so difficult for you to see your lovely husband goingthrough this, like you say at least with him not being so aware, its a blessing. ((((((bighugs)))) to you and the kids. xxxx

Sally, I hope everything goes well with your visit today with your mum, it must have been so difficult for you this past 2 weeks. xxx

Carrie, thinking of you. xxx

Jay, thinking of you. xxx

Lesley, hope you manage to get your dad out again today on this lovely spring morning. xxxx

Lorraine, not long till your holiday now, hope your mum is a little better now and your dad gets a little restbite. xxx

Becca, hope your dad is a little better and he and your mum managed a sleep last night. xxx

Sue, any news on the balloon ride yet. xxx

Debbie, hope your dad is improving, and your little ones too. xxx

Julie, hope Stephen is getting used to his lovely pink socks. xxx

Eileen, hope Rob is well and you too. xxx

Joan, How are you and David been worried about you both. xxx

Izzy, hope you are ok and Blair too. xxx

Rona, hope all is well in NZ. xxx

Christie, keep strong. xxx

love to everyone sorry if I have missed anyone out.

love Gayle xxx

Hello everyone,

Emma - Love what his friends did, its such a meaningful and comforting thing i think. Hope you and the girls are doing ok, your never far from my thoughts xxxxxx

Gayle thanks for the hug again...you've got soooo much love to go around :) xxx Glad Martin is enjoying getting out and about, its so nice to hear that. Were used to dad putting up a fight when it comes to going anywhere.
Again - not much on the sleep front for either of them. The doc did give him larazepam (!?) a few weeks ago and he slept all night and mst of the day and when he woke up was so groggy and falling asleep in his dinner. So much so that mum asked for something else, diazepam i think she said - although i thought this was a painkiller1?!

Diane - your having such a time of it lately, im glad you have managed to get some sleep and brought in the MC nurses. How wonderful too to have such nice neighbours and friends on hand. Yet you still amaze me with the ability to come on here and offer so much support, kind words and advice to us old and new xxxx My mum is so tired and im so worried about her. She is snapping at everyone and starting to lose her patience. I think it was only a matter of time. I know she wants to eventually bring in macmillan and MC but she still is trying to maintain what is now 'normal' for dad...without the introduction of strangers who may distress or aggravate him, i know of course that they wouldn't do this, but its any little change to routine for him now which sets him off(And he is VERY agitated now and has no problems voicing his complaints) so she keeps plodding along herself. I live in glasgow during the week and get home every weekend and do what i can...im not even sure if this is enough and im seriously considering packing in my job which is temporary until Aug and moving home. My review was intersting, a lot of chat about how my boss couldn't begin to imagine what it must be like to be me right now, and then 'lets see how we can seperate your work life and personal life so that your mind is clear and you can concentrate better on your work'. I said i'd be keen to hear her thoughts on that as i couldn't think of how that would be in any way possible! ha

Lesley - how you doing chum? not long till your back at work eh? hpe you get your childcare sorted out. Glad you got dad out for a wee while! How is your kitchen coming along? will be at home at the weekend if your on FB for a blether :) xxx

LORS - you poor thing, you have probabaly run yourself in to the ground and left yourself open to nasty cold bugs, hope it clears soon. Also that it doesn't hit your mum too badly and her chest gets better - chest infections are so scary aren't they. Lots of love and big hugs xxxxxxx

Hi Carrie - hope you are ok and that you have lots of friends and famlily around you xxxxxx

Debbie, hope the dreaded pox are nearly over with, hope you and dad are ok xxx

Its taken me two hours to sneakily write this post, so apologies if it doesn't make much sense

Bxxxx