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

    evening everyone just got home from the caravan got lots to do, have had a quick read will catch up properly tomorrow and post too, lots of love and thoughts to all you amazing people have been missing you all.

    love Gayle xxx

  • FormerMember
    FormerMember
    Hi Gayle, welcome back. Hope you had a nice holiday and that Martin is ok. It's been pretty quiet on here lately.



    Peter that must be strange with the different opinion on the scan. The tumour may have changed since that scan too so maybe they will do another one if they are considering offering surgery? Like you say he doesn't know all of the history too so it must be a bit strange for you at the moment. Can't help but have hope though.



    Sorry to hear about your Dad Jennifer. Hope you & your family are doing ok.



    Not much news here. Lots of packing and organising to do before the move. Dad doing ok other than feeling pretty fed up with it all. Two more rounds of temodal to go - feels like there's an end in sight now.



    Take care everyone xxx
  • FormerMember
    FormerMember
    Morning all,

    Not managed on muich lately as have been at the hospice most nights but thursday and friday are my days off work hence the reason for coming straight onto the computer!

    Hey Gayle, lovely to see you back... Hope all is well your end, im sure you'll let us know how things are when you've had time to unpack! x

    Debbie, my dad's situation sounds pretty similar to your dad's - he's had chronic back pain for weeks and weeks now (also in his shoulder blades), he was complaining of abdominal pain too recently - his stomach looks quite extended though. I actually looked at the brainhospice website not long after my dad was diagnosed...nearly fell off my chair with fright...couldnt quite believe that the horrors i was reading would actually ever ever happen, I look at it all the time now and see so many signs they list but the thing is everyone is so different and people can experience symptoms for a long time. Your right, the hospice is a wonderful place, the nurses are lovely. Unfortunatley my dad has been really distressed and upset and wants to come home - the doctors have said to my mum to keep him there until the weekend at least so they can assess him more. I think he's deteriorating a lot now but there's still obviously so much more to come unfortunatley but his body is so strong and he's fighting against it all so much. Its such a wicked illness. Hope you, your mum and boys are all bearing up as well as can be, of love. x

    Jennifer - So sorry to hear about your dad - I know what you mean about taking your mums pain away, its horrible to see them all alone but all we can do is be there for them eh. I too have a 4 year old daughter who has always been great pals with her grandad - she still visits him in the hospice just now but seems to be more intersted in playing snakes and ladders! take care x

    Peter - how strange being told 2 completley different things. Sorry i cant give you any advice on being operated on as my dad only ever had radiotherapy. But, it gives you some more hope and hope is the one thing that helps us fight against this. Lovely that youve managed away to the coast a few times...take care x

    Rona - you certainly sound like youve got your hands full with all the organisation with the move - as you say, at least there's an end in sight with the chemo and you'll be here by then?

    Just going to the hospice later this morning, will see what today brings - my dad's hardly spoken a word in days, he has chronic dysphasia and cant find most words to say so just doesnt bother...he also appears very depressed. Sometimes I think he doesnt know whats going on, then other's he appears very lucid and sad. Its so difficult as we never really know how much they know and what they're thinking - i personally think it would be better if he didnt know anything at all but unfortunatley it looks like he does. Ah well, we must carrying on fighting the fight as always.

    Lorraine, Becca & Gayle, thinking of you ladies - beleive it or not girls, have a mobile...has only taken me about 2 months! Its the same number as i had before but you'll have to send me a text saying who you are so i can save the number!!

    Had the newsletter from Samantha Dickson Brain Tumor Trust yesterday and it was asking everyone to watch the programme on sunday 2nd August on BBC1 between 5 & 6pm highlighting brain tumours...it must be the same one Diane and her daughter and involved in...sounds like a must to watch. xxx

    Much love to Jo, Carrie, Christie, Dianne, Sally and everyone else out there.
    Lesley xxxxx

  • FormerMember
    FormerMember

    Hi folks

    I did say I was gonna break from the site for a while but wild horses would not keep me away when so much of my lovely friends post here! Well folks its a month today since my lovely Mum died and even though I am trying so hard to move on I am finding it very very hard, was at docs yesterday and been signed off work for another 6 weeks I know within myself I am not yet ready to face it. We got my Dad a lovely little cocker spaniel, actually went to buy him a puppy and the woman we went to is the rescue officer for cocker spaniels and Sandy was there as he last owner is seriously ill with cancer and had to give him up and when we told her all what dad has been thru the last 2 years with Mum she thought a 2 year old dog would be easier than a puppy so we took a photo of him came home and said to dad and that was it Sandy now lives at home with Dad, never be a replacement for Mum but just a little companion for him and amazingly he has brought laughter back into the house which I thought a few weeks back would have been impossible.

    Gayle - Its always so lovely to keep in touch with you, I am praying so hard that Martin's results will be good ones on Monday sure they will be and who knows with me being down the Ayrshire coast next week we might get to celebrate together, text you soon x

    Lesley - Hi pal, so sorry to hear of your Dad, so glad you have a new mobile, will text you later to let you know its me, have missed you always here for you even though my journey of this awful illness has ended, keep strong and have hope hun I did right up until the very end and it keeps you going, will need to watch programme next Sunday x

    Rona - Bet your counting the days until you come home beside your lovely Dad.

    Becca- Not sure if your still reading just wanted to say hi and send you a big hug, text you soon x

    Diane - Same also not sure if your still around to read, so hope your doing ok, sorry to hear of your Dad also sending you a big hug x

    Emma, Carrie, Jay - Thinking of you so much as now know how it feels to loose someone you love so very much. x

    Dianne J - Hope H is doing ok x

    Well folks my lovely hubby breaks off on holiday tomorrow night for 2 weeks we all wish things were so different as the four of us would have been jetting off to the sun but instead Scott has qualifed for the national bowling finals in Ayr with his Dad and brother so we are off to a caravan at Carig Tara Mon-Fri and hopefully he will do well, Mum was very ill on Fri 19th June when he said to her he would do it for her when he played his qualifying game and thats what he did and I know next Wednesday when he plays she will be watching over him and so very proud of her son-in-law, the guy that has been there so much for her heartbroken daughter over the last month, then the next week we will have a week at home and just do things around Scotland its too soon yet for me to leave my Dad and to leave Mum's grave as I go everyday and speak to her and arrange her flowers, its a place where I gain so much peace from and just know that my lovely angel is now resting away from that horrible illness that has destroyed so many lovely people I know :)

    Folks as I have said I won't post as often as its so hard for me but I will always be here for each and everyone of you anytime night or day.

    Lorraine xx









  • FormerMember
    FormerMember

    Hi everyone

    Sallye, hope that you have a lovely time in Wales, you certainly deserve a break. xx

    Jennifer, ((((((bighugs))))) to you and your family. xxx

    Debbie, ((((((bighugs))))) to you and your family too. xxx

    Peter, hold on to every bit of hope there, we just never know whats around the corner. xx

    Rona, not long now until the chemo finishes then hopefully your dad shall get some quality time, when do you move back home, bet its manic at the moment preparing. xx

    Christie, hope your well. xxx

    Dianne, hope all is well with you Hannah and the rest of the family. xx

    Sandra, welcome to our little group, hope that it helps you as much as it has helped me. xx

    Lesley, new phone great missed our little texts will text you soon, sorry to hear that your dad hasnt been too great, its such a horrible bloody illness grrrr, are you back at work after your family break? Take care speak soon. xxx

    Lorraine, Sandy sounds like a little miracle and as though he is helping you all, a month already time just flies past so quickly, ((((((bighugs))))) to you your dad and Scott, will keep in touch and really hope to meet up with you next week when you come down the ayrshire coast it would be great to celebrate Martins great scan results with you and Scott, good luck to Scott in the bowling finals. xx

    Diane, hope you and the kids are well, and that you are all having a lovely family holiday together, relaxing with your inlaws, love to you all. xxx

    Becca, how are you and your family? lots of love to you all. xxx

    Julie, love to you and Stephen, keep fighting hun. xxxx

    Joan, how are you, David and the family? xxx

    CH, how is B not had the chance to catch up on other site, maybe catch you on facebook. xx

    Susan, how are you and Paul? xx

    Carrie, Emma, Jay and everyone else lots of love to you all enjoy your summer as well as you can, everyone is now going through so many different situations. xx

    Well folks we came home late last night, but we are off to the caravan again tomorrow for the rest of the summer holidays, Martin is really enjoying himself there so why come home eh?? We get the latest scan results on monday, as you all know it makes me ill leading up to them, praying everynight for the results that we want, I will text Lesley and Lorraine with the results so that you wont have to wait 3 weeks to find out.

    Also got problems regarding work thats me been off for over a year now and Scottish gas are taking me to a stage 4 hearing (I could loose my job) should have been tuesday coming, but because my union needs more time, it shall be sometime in august, something I could do without but came through alot worse eh folks, you all know because you are all on the same journey!!!! Take care one and all speak to you all soon.

    love Gayle xxxx

  • FormerMember
    FormerMember
    Welcome back Gayle As usual you include everyone in you post!.
    Sandy sounds ideal for your Dad Lorraine hope your ok
    Martyn hope you've managed to speak to someone re your concerns about Doreen
    Lesley there is a picture of Hannah on the front and also her story inside on the Samantha Dickson news letter I don't think I will be able to watch the programme on 2nd August (I think it will be too hard) I hope it gets the point over re the lack of research into BT. I was thinking about doing a petition on the number 10 site what do others think?
    Take care everyone
    Love DianneJ.xx
  • FormerMember
    FormerMember
    Hi everyone, sorry not been around for so long but just couldn't post, although Ihave kept up with the news. Lots of sad news and some hopeful, some old friends and unfortunately some new.
    Well were do I start, had a few months of Rob being so down and tired that I seriously thought I was losing him but he rallied and believe it or not I managed to get him to go away on holiday.
    We took a cruise to the Norweign Fjords on 4th July and both of us just chilled out, we didn't do much as he is still tired a lot of the time but having everything done for us was fantastic (for me anyway) and as we had a balcony it meant that even when he wasn't good he could still sit and enjoy the fresh air and the beautiful scenery.
    His last scan was good (in May- God is it that long since I have posted??) no new growth and swelling greatly reduced, so we are now trying to get him off the Dex, down to 2mgs and doing ok.
    Only thing I have noticed is how childish he is getting, like a few of you have mentioned I am having to correct his eating manners, he asks for my aproval on everything from what he is to wear to can he go to the toilet?? I ask you is this normal.. I got so angry with myself on the cruise (1st few days) for feeling embarrased about him and his behaviour, then I thought what the hell, I'll never see these people again and as long as he is happy that's all that matters.
    I'm rambling, sorry.
    Hope everyone is coping with your own nightmares.
    Julie; let me know how you and Stephen are, is he on the trial?? How are you coping with it all.
    Carrie, Gayle, Becca, Rona, Woody, everyone, you are all in my thoughts always even if I am not posting I am still thinking of you all. Love and hugs ,

    Eileen xxxxxxxxxxxxxxx
  • FormerMember
    FormerMember

    Hi Everyone

    Dianne, that is fantastic news re the programme on the 2nd august, it shall be a difficult one for you bet you are so proud of her, I dont get the samantha Dickenson newsletter but will have a look on the site, I do get Target the BT UK newsletter, which can also be accessed through the internet. Great idea about petition, lets do it. xxx

    Eileen, so nice to hear from you, so glad to hear that you and Rob managed to get away on holiday, bet its done you both the world of good, I know what you mean about childlike behaviour, typical of gbm. xxx

    Well tonight we watched the bucket list...........Martin told me he doesnt ever want to know if his time is up I have to keep it to myself, although he says he will beat the tumour and he will live until he 90 lets hope and pray he is right, he now is going to make his own bucket list, he made me cry so much.

    love Gayle xx

  • FormerMember
    FormerMember
    Morning folks,

    Dianne- wow, I read Hannah's story when I received the newsletter - just didnt put two and two together - doh. What a fantastic, gorgeous girl you have there, you must be so proud of her. My friend Lorna had a wee tiny mention in the newsletter as she had ran the London Marathon for them. The petition is a great idea - its about time the UK realises how big an illness this is becoming and not some "rare" one as were all told. x

    Gayle - Am i right in thinking you get results next week? fingers crossed if you do. No wonder you cried...havent seen the bucket list but have heard its sad. Lets pray that Martin is right, hope and positivity is half the battle. Yep, back at work, came back the Saturday night and was back on Monday...!speak soon xx

    Lorraine - your post nearly had me in tears - just so poignant - It sounds a lovely spot where your mum is. How lovely getting your dad a dog...of course it wont take away the pain but if he can help bring a wee smile to everyone then great. Enjoy Craig Tara...i used to go when it was Butlins when i was very young and absolutley loved it...great memories!

    Eileen - nice to hear from you again, how lovely you managed a break...Norweigan fjords and a balcony sound fantastic. I can relate to the childish behaviour too - my dad had impeccable manners but for a long time now he has dribbled his food & picked his nose (he wouldnt be happy with me sharing that one!!) without caring who sees him. Not that it matters at all eh. x

    Well my dad is still in the hospice, he's started being incontinent during the night so they now have him on a catheter, he doesnt seem upset by this at all thankfully. He hasnt spoken a word really in about 4 days - he answers yes and no but nothing else. We dont know if he truly knows whats going on or if he's that p*******d off and depressed that he just doesnt want to speak. I wish we knew more? The hospice have also started reducing his steroids slightly...not sure if this is normal but i think it is...he was on 12mgs but now down to 8mgs. Can only see what today brings, a miracle that he might perk up a bit and get back this weekend. Maybe just maybe.

    Love to all Debbie, Jo, Becca, Christie, Rona, Michael and everyone - wishing you and your loved ones as peaceful weekend as possiblexxx
  • FormerMember
    FormerMember
    GETTING MILITANT
    PETITION FOR MORE RESEARCH INTO BRAIN TUMOURS

    Decided to put in a petition to number 10! It only allows 1000 characters so it had to be short, now have to wait until it is accepted - I urged the PM to 'Push for more research into brain tumours' hopefully we can get lots of people to sign up to it! The statistics can make you quite angry or is it just me?.
    This is the link when hopefully its accepted:
    http://petitions.number10.gov.uk

    Regards and love to all DianneJx