Glioblastoma Why Why Why <br/>

FormerMember
FormerMember
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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
    FormerMember



    Hello everyone

    Gayle - pleased to hear you had a good day, Martine enjoyed playing with Keri and that you met up with your friends. You must be exhausted now. Enjoy your wine.

    Emma - I can understand why you're worried about Matthew. How is he now? Have you phoned the hospital? Enjoy your night without the girls.

    Hope everyone else is ok. Joan have you returned from your break yet?

    B is really starting to talk nonsense now (although come to think of it he often didn't make a lot of sense before). He starts a sentence and then can't finish it, or seems to get very tired when talking. He also was saying he was bored earlier, but as he gets so tired and concentrating is hard for him it's very difficult to know how to keep him amused, apart from sitting with him all of the time which isn't practical as things need doing around the house.

    I feel awful having a moan when he has just got home but as soon as I start to do something he keeps asking for me to do something for him.

    Carrie x

  • FormerMember
    FormerMember
    hi all
    Carrie, glad you have B home at last despite yesterday's farce, talk about last minute! don't be sorry about having a moan, you're allowed to among friends!
    gayle, glad you enjoyed your day out, its always nice seeing friends, such a "normal" thing to do in this abnormal world we live in!
    lesley, hope your dad s doing a bit better.
    Emma, hope Matthew is a bit better, sounds unlike himself today. Like you, I'd be wondering about the steroids. Did the trial people give you a number of someone to call if you had concerns( am I right in thinking it was them who wanted the steroids reduced?) maybe it would be worth calling them for advice - would it jeopardise the trial for him if you increased the dose again? I remember you saying a while back that you'd found the best dose was 6mg or so and that he's had problems when it was reduced in the past. I do hope he's a bit better tomorrow and that you get to enjoy your lie in!
    Diane xx
  • FormerMember
    FormerMember
    Hi Gayle,
    Hope you have a lovely day.

    And thank you for all the effort and excellent support you put into this thread.
    It is a safe haven for many going through our private storms.

    Love,
    CHxx
  • FormerMember
    FormerMember
    Morning all - where would I be without you all???
    Thank you for your support yesterday.

    Matthew is better today - well at least no headaches he got up at 7 took his meds and is still in bed - side effect of the drugs (one of many) is tiredness so am leaving him to sleep peacefully as the kids arent here. Its a beautiful sunny day here which always helps to lift my spirits so am intending to do some gardening without my little helpers!!!

    Diane - what a memory you have! yes 6mg was the dose we found to keep matthew being mr duracell but they felt that since the swelling had decreased and the tumour shrunk a little we should try and reduce the dex so he is now on 4mg and has been for over a week, he did use to suffer from migraines pre bt so perhaps that is what it was? I am not allowed to give him anything unless I have called the hospital first - but since the headache has gone today I am not overly worried but will def mention when we are at hospital again on thursday - hios next scan is the end of the month - I know they tell us to watch out for headaches that come on in the morning and last all day but they need to be regular as i understand it so lets hope this is a 1 off!

    Well I hope you are all having an ok day and Gayle as promised i didnt ring to sing!!!!! but hope you are having a fantastic brithday with your gorgeous family

    Big hugs to you all xxxxx
  • FormerMember
    FormerMember
    Gayle

    Wishing you a wonderful birthday. Hope you have a lovely day

    Sending you lots of love and hugs

    Carrie x
  • FormerMember
    FormerMember
    Hi everyone.

    Emma, so glad to hear Mathew is feeling a bit better today, the extra sleep will do him good, recharge his batteries, great that you got a lie this morning you really do deserve that one, you should have a relaxing day while the girls are away!! I was up at 7.30 I fell asleep last night with a glass of wine in my hand lol, another glass spilt what a waste of good wine. xxx

    Thanks to everyone for my birthday wishes, I have had a lovely morning with Martin and Martine they got me gorgeous flowers and perfume they are lovely, the best birthday present I could get would be to find a cure to defeat this horrible illness, so we can all keep our loved ones and we shall all be happy, oh and maybe a win for Rangers today and let them lift the cup today.

    Thinking of all my lovely mac friends.

    love Gayle xxxxxx
  • FormerMember
    FormerMember
    Just a little message as I don't normally post on this thread as I started off with the 'we talk brain tumours' and have met so many lovely folk on that but I have spoken to a few of you who use this thread and I know you are all lovely guys too but I did not want today to go by without saying a few things:-

    Gayle - Happy Birthday to you, hope you have a lovely day with the 2 darlings in your life, thanks for the message on facebook the other week, my pc is broken the now (virus) I think so its away to the workshop to get looked it but I have jumped on to Mum's pc today its never used now as she not able and I thought hey I am going to have a shot and read the threads etc and when I noticed it was you special day I had to say Many Happy Returns, I so hope one day to chat to you and even maybe one day all of us scottish gals can meet up and share all our thoughts and feelings and sure we would have some laughs along the way too, life is very hard for me at the moment as you have maybe read on the other thread that I am struggling to juggle working life and try and be there as much as I can for Dad and Mum and also try to find to time in my marriage to Scott, but anytime you want to chat you know where I am, have a lovely time in Benidorm, hope to chat to you soon lots of love xxxx

    Lesley - My friend I tried to reply to you 3 times on Wed on facebook when that dam pc of mine was just playing up so with me being off I phoned the repair man and he came yesterday and took it away so I am now using Mum's, they are all watching the footie and I thought I will have a wee read of the thread then thought I will post on this one for a change so I could wish Gayle a Happy Birthday, anyway pal how is your Dad doing? remember I am here anytime you want to chat you know that eh, love to you all xxxx

    Diane - So sorry to read your post the other nite, this illness is just heartbreaking but as much as it can get you down you just have to try and stay strong as I find that it does help alot, my Mum has not had a scan since August 08 and I know within my heart that when she gets the next one it won't be good news as I have seen her go downhill so much, she has not been to Edinburgh as she is virtually unmobile the now to get her there, maybe not knowing is for the best as I don't thinks she would cope with more chemo, thinking about you lots and anytime you need a chat please feel free to contact me. xxx

    Becca - How is your day doing? thinkin about you lots as know we roughly the same age and very close to our parents, hope to chat to you soon xx

    I know there is other folk that use this thread that I have not really spoken to but I hope one day I will, Izzy, Carrie etc its so sad that we all going thru this but without this site it would be a 100 times worse, take care of yourselves.

    Just a little bit from me as I know earlier in the week you guys were saying about where you met and got married, first dance etc so as all us girlies like to know these things I will let you know about mine, I fancied Scott for ages when I was just a teenager (alot of years ago) my friends were forever at him, to date me but he said no that he was not interested anyway after alot of months he said he would give me a go!!, so we were only about 16 years old went to the pictures and ended up we could not sit together as the cinema was packed so our first date was spent apart (but I had the sweeties) so it was fine, but we did date again and it just went from there, he is my childhood sweetheart, I have been with him more than half of my life in years, we got engaged on 4 May 1996 and married on 28 July 2001 in our hometown of Buckhaven it was the Parish Church with a reception at Laurel Bank Hotel in Markinch and then 2 weeks in Majorca and we have not looked back it will be 8 years this summer and it has been the best thing I have ever done but the now it is very hard as I can't be the wife to him that I want to be, our first dance was to Wonderful tonite and its still our song no matter how drunk he is at an end of a nite he will always find me and even though I have to hold him up we manage to sway to it and reminisce of our wedding day, our last song was Loch Lomond and Scott and I ended up doing the highland fling in the middle of all our family and friends and my lovely Mum played the biggest part on the day as she organised it all and she was beautiful and I have a photo of the two of us her admiring me and its worth more to me than anything and when I don't have her I probably will have it blown up in size and framed so I can look at her everyday and smile and think yeah she's not just my Mum she is my best friend ,,,,,,,,,,,,,,, to each and everyone of you, your all in my thoughts but with each other we will get thru it.

    Lorraine xxx
  • FormerMember
    FormerMember
    Hello everyone. I just wanted to say a quick hello while I have a minute. Carrie I'm so pelased to hear that you have B back home. I hope you are enjoying being together again.

    Emma, I hope Mathew is doing ok. It know how scary any sign of a headache feels and you don't know if you're over reacting or not.

    Izzy - get plenty of rest. Pregnancy is exhausting enough without having to worry about scan results. Thinking of you both.

    Well we made it across the world and my little boy and I are now at my Dad's. It is so great to see him again, I'm so pleased we did it. I'm sad that my partner is missing his little boy but I had to be here again and spend time with my Dad. I have to admit I was a bit shocked when I first saw him - the steroids have changed his face shape so so much and his hair loss was sad to see too. I'm used to it now though and just really happy to be here with him. My baby is jet lagged and has cold/cough, poor thing. He's sleeping loads. Think I'd better wake him up so that he's not up all night!

    I have really enjoyed reading all your romantic stories and seeing a few wedding pics. I met my man in Uni when I was 22. We just had loads in common and it went from there. We both love to travel and moved to NZ in 2004. We have also lived in Sydney and have been very lucky with all the interesting trips we have made together. We had a baby boy 8 months ago and he has just made our world complete. We aren't married yet but I would like to get married in the not too distant future as would hate for my Dad not to be there.....

    Hello to everyone else too. Lesley hope your Dad's ok. Hope you all have a relaxing Sunday evening
    Rona xx

  • FormerMember
    FormerMember

    Hi folks,

    Gayle, hope you've had a lovely relaxing day (smelling of your new perfume of course!)....and I hope rangers won just to top your day off!! Paul's a hibs fan so he was delighted with the hibs hearts score yesterday! Hope Martin is well after his day out yesterday...as I said on facebook, he looks absolutley great. The countdown to holidays must surely be on now! xx

    Carrie - How is B now? Hope you've been able to enjoy your first weekend with him home. never apologise for moaning on here...that's what were here for, whether its sharing in triumphs and good news or a shoulder when things arent so good, and always always to listen to a good old moan...im the worlds worst!!

    Emma greenfingers! - Glad to hear Matthew has improved today...what a worry it is never knowing if its a "just" a good old migraine eh. nice you got to do a bit gardening in the sun too!

    Diane - Do hope your bearing up okay this weekend - thinking of you and your kids.

    Lorraine me old friend! so nice to see a post from you and let us know how you and your mum are. That's a long time since your mum had her last scan isnt it? As you say though, is it worth the pain and worry of another scan...sometimes oblivion seem the best option? So you and Scott are childhood sweethearts...how sweet! What a beatiful tale of love between you both. Love your first dance song too....i find that song makes me cry for some strange reason ( a lot of songs have that effect on me though....as i've said before, even bucks fizz or barry manilow!) Speak soon..when the pc allows

    Izzy - how are things with you? Hope your keeping well.

    Well my dad's still in hospital - his mind seems okay and he is able to walk to the loo etc but he just looks physically a real mess. He is still covered in bruising and his other leg is now starting to go black with the bruising from the dvt. A nurse mentioned that a couple of small clots may have been found on his lungs but she wasnt sure but we wont know more until tomorrow...the hospital seems to shut down at weekends! I have a bad feeling about all this. his perpetual optimism has definatley gone and mine is fading.

    Love also to Jay, Karen, Becca, greentree and everyone else tonight.
    Lesley xxx

  • FormerMember
    FormerMember
    Hey Lesley,
    You keep your chin up love, its hard picking yourself up every time i know but your a strong tough cookie! fingers crossed that there are no further clots and he gets home soon...love to you and yours.xx x x

    Gail - happy birthday again!! although im honeslty chuffed to bits about the score m'on the hoops!!!! ;o)
    I never post on this thread normally but hello to all

    xxxx