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

    Lorraine,

    Felt so sad for you and your mum and dad when I read your post. You have every right to a bit of a rant and I don't blame you at all for having a bit of a pop at the neighbour. It does seem very uncaring of her not to at least ask after your Mum. It must be very stressful for you trying to juggle so many balls in the air but I'm sure it will be so good for your Mum and Dad to have so much love and support from you. Although it is Parkinsons rather than BT that is affecting my Dad, some of the effects are similar and it is causing so much heartache and anxiety for my Mum. I feel guilty that I can't get up to see him as often as I'd like but I live 90 miles away and with work and wanting to spend as much as time with Paul, I just can't get there apart from weekends. Fortunately my sister and brother both live quite close so they are able to spend time with my Mum weekday evenings and take her to the hospital to see Dad. I still wish I could see more of him but I do call Mum a couple of times a day and I think that helps and it's a way of keeping in touch. I did take a spare mobile phone with me to leave with Dad while he was in hospital but it wasn't a success as he is quite deaf and he couldn't seem to get the hang of using it. We don't know yet when Dad will be out of hospital. They are still assessing him in the special intermediate care ward and it might be that they will then transfer him to a rehabilitation ward to try and improve his mobility. I'm going up again on Sunday with my younger daughter, Paul is quite happy being at home when there is a Grand Prix race on.

    Emma, what a wonderful send off you gave Matthew. It was so moving reading about it. The fact that so many people went to the funeral says a great deal about how loved and respected he was. Love to you and your girls.

    Jay, I have saved your post about dealing with grief. It was very touching and contained such good advice.

    Hugs to all,

    Susan

    xxxx







  • FormerMember
    FormerMember

    Thanks Susan sorry I did not mention you on earlier thread I get so mixed up who posts on which one, I normally do on WTBT but lately been on this one anyway you mut be like me and post on the two, just my mind not my own the now does not mean I don't think about you, actually saw your message on FB saying you did not get in the balloon again that is such a pity.

    It must be so hard for you with your Dad living further away, I live in same street so not just as bad but at the same time Susan you have Paul that needs you to, hope his BP is ok and he is doing reasonably well, I am here anytime you need a chat.

    Just off to bed nite folks.

    Lorraine xx





  • FormerMember
    FormerMember
    Got to be a quicky (as if I find it impossible to do short and sweet!)

    Emma and the girls-I read your post ,cried ,laughed but most of all imagined what a wonderful tribute you gave to him!IT sounds just what he would have wanted.Thanks for posting your desciption,I felt submerged in your memories and songs you have chosen so amazing is one of my favourite songs ever played it tonight thinking of you nd the love you share!!
    Sending you love ,support to get through both the calm and stormy times that lie ahed in your journey x

    Carrie-sending you love and support for this part of your journey also,we are only a few clicks away whenever you need us!!

    Jay-love to you and the girls,again we are here when you fancy a chat ,cry or rant.support and strength always.

    Dianne -so sorry to hear about your hubby catching shingles,its a horrible illness still not seen dad been 10 day!!
    Gayle-lovely to hear from you ,hope martins leg is ok keep us posted xx
    Christine-keep smiling peatal,hope you have a fab time at alton towers and when you meet the man on your wish list(sorry I m rubbish with names)
    lesley-hope your dad is ok honey,thinking of you sending you support and strength to carry on fighting the fight!
    Joan- hope you are ok I think I sent you a message the other day but not sure it was very late!!!let me know how you are??
    to izzy,CH,becca ivmykids,rerland,susan,lorraine and everyone else I may have missed

    Feeling preety low tonight Dad rushed in hospital last night couldnt breathe on oxygen and nebuliser in high dependency unit,cant visit him due to kais chicken pox,feel helpless and out of touch,testing him for diabetes and giving him transfusion as his platlets are so low what a bugger!!!!anyway love to you all still ever hopeful as tomorrow is a bright new day for us all!x
    Debbiexx
  • FormerMember
    FormerMember

    Hi folks,

    Emma - what a fantastic turnout for Matthew - sounded like an amazing send off, just the way you wanted it- and its no surprise at all that it stopped raining at just the right time. 400 people? What an amazing testiment to a lovely man..love to you and the girls. xxx

    Carrie - thinking of you too. Hope youve been bearing up as well as can be these past few days. xx

    Jay - What a superb post, so well said,thanks for sharing your grief tips. So nice to hear that your planning some lovely holidays for you and your girls. xx

    Lorraine - You do an amazing job love...your mum and dad must be so proud having such a loving daughter...we would do anything for our parents though eh. Dont worry about your neighbour...these people arent worth wasting any of your energies on at all - ...although confronting this ignorant woman might just embarrass her and might make you feel a tiny wee bit better...or maybe thats just me!.

    Debbie - How awful for your poor dad - must be such a nightmare not being able to see him.... My dad had two transfusions about 6 weeks ago when he contracted the dvt...Hope you get to see your dad real soon. Poor wee Kai too...Amber was 4 a few weeks ago...my boy Joe is 10 months....hopefully he can avoid the chickenpox but it some respects when they get it young, at least thats it over with!! Is your dad still in hospital? If so, hope he's out soonxx

    Becca - Read over on the other thread about you managing to get hold of Prof Rampling...good for you girl. Obviously he knows best and thinks the meds arent needed for your dad...not sure why my dad's getting the anti coagulants...every case is different isnt it. Hope the sock helps....elevation all the time too. I take it that's a new thing with your dad not sleeping...poor thing. I worry so much about my mum too...her health has taken a battering but obviously in a different way. Enjoy your beer love and dont take any rubbish tomorrow...we more than anybody else right now are allowed to make as many mistakes as we want lol! If your dads feet are swollen, I got slippers for my dad through a website...extra wide ones with a velcro strap and theyre great..if you want the link just let me knowxx

    Diane - Hope your okay..your obviously going through an extremely tough time but manage to stay upbeat for others. xx

    Gayle - glad you all enjoyed the caravan...it sounded lovely, a well deserved wee break. Hope you manage some sleep ...no 10 hour chatterthons tonight i hope! Yes, no message from Mr Derek Accorah (or however you spell it) booooo! maybe next time? xx

    Christie - so glad your doing so well, what an amazing attitude you have....have a fab time at Alton Towers...you certainly deserve it. x

    Well my dad still getting the district nurses in twice a day to give him his anti coagulant injections and dress his leg as his dvt and cellulitus infections are still pretty bad. Yesterday his mood was so low, I just felt so so sorry for him, it was a beautiful day in Edinburgh and he just sat staring at the walls, i think the realisation of how bad he is hit home yesterday. Tonight he has perked up again and for the first time since getting out of hospital said he might attempt to come out for a drive with me int he car tomorrow. Its a small step but a huge one too. Im back to work in 3 weeks and tryiing to get all my childcare sorted out too ...its a bleedin nightmare! My mum was going to watch Joe for 2 days a week but its too much now so frantically trying to find a decent nursery in such a short space of time for one day a week....helppp. Still staying at my mums as kitchen still getting done...its a good support for my mum right now so am happy to be here. Anyway, feel like have written a short novel...must stop coming on so late at night as its easy to just waffle on...and on!

    Love to all, Joan, Susan, Izzy, Eileen and everyone else xxxxx

  • FormerMember
    FormerMember

    Hi everyone

    It was a wet morning here, but now turning into a lovely day :), well had a great sleep last night with the help of sleeping tablets slept from 10.30 - 7.30 Wal..... that is strange for me feel great for it today tho. Martin been up since 5.00am and I never even heard him, he had Martines packed lunch and tuck ready and her cereals out, he is just amazing me at the moment.

    Emma, Carrie and Jay (((((big hugs)))) xxx

    Lesley, hope your dad is better and you manage out a little drive in the car today, it must be nice spending time staying at your parents house just now and great support for your mum, good luck with childminding, it is a nightmare I remember having to do that one. xxx

    Lorraine, hope things have improved a little for your mum and all of you today sending you a big hug. xxx

    Becca, hope things are getting a better for all you too, big hug. xxx

    Debbie, hope your little one is better and your dad too, bet you are really missing being with him, when do you come back up to glasgow. xxx

    Joan, Eileen, Christie, Rona, Izzy, Sue, Suzanne and everyone else thinking of you all.

    love Gayle xxx

  • FormerMember
    FormerMember

    Hi folks,

    Gayle - 5.00am? That's fantastic, what a man - I was up at that time too but only because Amber had wet the bed and were all sharing a double at the moment!! Good to hear you finally got a mega sleep - well needed no doubt. Finally managed to get my dad out - just an hours run in the car - he still had his slippers on! So delighted.

    Love to everyone xxx

  • FormerMember
    FormerMember
    Hi Lesley

    So glad you managed to get your dad out for a wee run it would him the world of good, when Martins feet were really bad, he used to go out with his slippers on too, including the time when he was going to the pubs, he would go in with his slippers on lol. No fun getting up at that time of the morning usually I hear Martin getting up but this morning between the tirdness and the tablets I was zonked, take care.

    love Gayle xxx
  • FormerMember
    FormerMember
    ps

    meant to say I actually fell asleep on the setee about half an hour ago Martine, wokr me up to say she was starving, I was very grumpy thought it was the middle of the night, lack of sleepnow catching up with me.

    xx
  • FormerMember
    FormerMember
    Oh poor you Gayle, I hate when that happens...you somehow feel even more tired...maybe your caravan break catching up with you!
    xx
  • FormerMember
    FormerMember
    Hi folks

    Just a little hello as mum, dad and Scott watching the footie, well things still pretty rubbish, my way Scott and I both choked with the cold (I can't seem to get rid of feeling rubbish the now just ran down I think) anyway now Mum has caught it from us her resistance will be very low due to the steriods and it seems to be on her chest she was very weak for Dad this morning luckily my Auntie was there to help get her washed etc, thats all she needs as she is weak enough, I feel so lethargic with it so Mum must feel a 100 times worse, she keeps asking for a fag and Dad says no because of her chest so then she takes the huff - oh ain't life wonderful in this life of BT's (not), anyway folks as you all know we just need to keep going and smiling along the way.

    Gayle - What a shame you must be shattered and bet when you woke you did not know where you were some mornings I still have to think is it right am I living this life or is it a dream, so lovely of Martin doing the bairn's packed lunch etc for her you must be so proud of you darling, I was saying to one of the girls at work about this site and it feels as though I have made pals without even meeting them - so nice but so crap this is what had to bring us together, big hugs xxx

    Lesley - What braw to hear that you had your Dad out in the car, I so wish I could take Mum out we thinking of hiring one of those cars that you can put wheelchairs into up the ramp etc when we off in May for a week but she is so sleepy the now I wonder if it would be worth it but she so loves to be outside, again as I said to Gayle its so lovely to have guys like yous, thanks for your message re my neighbour folk like that not worth it but its nice to know I have special folk here to turn to, my own friends are great too so I should not worry about a stupid neighbour even though they are good friends with my in-laws Scott will probably say to his Mum anyway how I am feeling, hope Amber and Joe ok and your Mum and Dad and hubby xxxx

    Hi to everyone else.

    Lorraine xx