Glioblastoma Why Why Why <br/>

FormerMember over 16 years ago

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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 over 15 years ago

Hi. We had our first appointment with the oncologist which went really well. Was expecting to come out all defeated but he managed to make us feel positive and the oncologist said my partner Jamie couldnt be in a better frame of mind to begin treatment. He also said our wedding in August should be fine as they will stop the Chemo for a few weeks so he is up to it. Jamie seems to be improving now so I think my angst about him deteriating was down to him getting over the op and coming off the steroids. So can honestly say am feeling in a much better frame of mind. x

FormerMember over 15 years ago

Carrie - wow what a post - hats off to you for keeping up with everyone else and posting such amazing things.

Still not caught up with you all but think of you all - no matter what stage any of us are all at - it hurts so big hugs to you all & yes Gayle I'm coming to see you - well with 4 firemen too!!! tried to book flights tonight but after a few glasses of wine thought i should leave it until tomorrow just in case I end up somewhere else!!!

Well people still not real for me at all even though its nearly 4 weeks in I cant say its hit me still - which is so odd - I dreamt of this moment for so long and I am nothing how I thought I would be - I am going back to work after half term so perhaps when real normaility sets in it may hit.

But to all of you at all different stages keep strong and keep positive - if you dont have hope what have you got

MUCH MUCH love to you all xxx

FormerMember over 15 years ago

Hello all,

Well the balloon flight was cancelled again! Next attempt is Tuesday morning so we'll see whether it happens this time.

Just catching up on everyone's news. Carrie, so good to hear how you are doing. I hope you have a great time at the BBQ. Both of my daughters and their boyfriends will be with us on Sunday (Jo, the older one lives in London) and I was thinking of doing a BBQ in the evening so let's hope for fine weather!

I'm off to Liverpool again on Monday to see my Dad who is still in hospital. Paul wants to come with me this time so we shall take Bullseye too as I wouldn't want to leave him at home by himself all day. As you say, Carrie, it's not really practical to have a dog when you both work. We got Bullseye after Paul had to give up work and I think it was the right thing to do as he is good company and he's such a well behaved and affectionate little hound. My Dad keeps asking when he can come from hospital but I think he'll be in for a while longer yet. They are supposed to be moving him to a ward that takes mainly patients with Parkinsons but the move was delayed yesterday because none of the nurses has been trained to set up the syringe driver which I find quite extraordinary!

Christie,we haven't really got to know each other yet but I just wanted to say to you that I think you are doing brilliantly, coping as you do. Keep strong and positive as you have been up to now. The treatment isn't pleasant but I have seen in my husband the improvement the RT and chemo bring about so keep with it, kiddo! It's great that you and Sallye are both going to Glastonbury It's something I always wanted to do. I used to go to a lot of festivals when I was a student but when I see how much these weekend festivals cost now, I wonder how students can afford to go! My daughter and her boyfriend got tickets for the V festival later in the summer (she loves the Killers and Snow Patrol) and the tickets cost the best part of £150 each! Ouch!

Gayle, have a good weekend away in your caravan and when you see Emma, give her lots of hugs from all of us.

We are back at the hospital on Thursday when we will get the results of the MRI scan. Not looking forward to that one bit although at the same time, I want to know what is happening. Paul keeps on saying he is fine but then again, he would say that!

Hello to everyone else I haven't mentioned. I hope everyone has a pleasant and peaceful weekend as possible and that those who are facing sadness and difficult times find lots of love and support to help them through.

Susan

xxxxxxxxxx

FormerMember over 15 years ago

Hi all

Sallye, hope your mum is improving on the antibiotics, that would be great if she could resume chemo and not be worrying about side effects

Gayle, enjoy your caravan again – though weather not quite so good this weekend! Never mind, you can just cosy up in front of the fire and have some quality time.

Becca, hope your mum and dad got on ok with the hospice nurse, and that they were able to organise the over night care. That’s funny re the Heinz soup – my hubby started asking for that out of the blue when he could still ask for these things, and enjoyed it. Must be to do with tastes from the past I reckon. He also went through a phase of asking me to make all the things he used to make, think he wanted to make sure I actually could cook them!

Hi Christie – that’s wonderful news about the scan, hope you are celebrating big time. I agree with Rona and Susan , you are doing so well with your approach to this, offering help and advice to others – keep positive! I hope you do get to meet some other young people with BT, I’m sure you will be an inspiration to them!

Hi Carrie – well done on the MOT. The other day I checked the tyre pressures for the first time ever – I never realised how easy it was! Sounds stupid now but I had been worried I’d do it wrong and deflate them! How stupid is that?! I hope you enjoy the BBQ as much as you can. Did you decide what to do about work?

Joan, glad to see you posting again, hope you are ok

Dianne J – also great news re your daughter’s scan, just in time for the exams – always something stressful going on! Glad you have some breathing space just now.

Lesley – last weekend of freedom?? Did you get the childcare sorted?

Laura, good to hear your encounter with oncology was positive and that you’re in a better frame of mind. It is a rollercoaster as people often say! Brilliant that Jamie is feeling better too.

Hi Emma – so you are driving through Scotland? How much of the trip are you doing? Hope you get some good weather and get to see our lovely country at its best! We live quite near the airport and I’d love to offer to help you out but really can’t do much just now as its difficult to leave hubby as he needs someone around fulltime so I can never be away for more than 2 – 3 hours at most, when the “respite” carer comes.

Hi Susan, hope your dad continues to improve. Try not to think about Thursday till Thursday – you have a balloon trip to think of before then!

Love to all

Diane xxx

FormerMember over 15 years ago

Brilliant news Christie hope you've celebrated in style. You will have a brilliant time at Glastonbury I'm envious. My daughter would love to chat thank-you- she has her own umbrella account on SDBTT as she is raising money for brain tumour research £24,000 so far, as she looked into it when she was diagnosed and found that only 1% of cancer research goes into brain tumour research. The SDBTT are really helpful they arranged a meet and greet for her to 'Mcfly' which she loved. When's your next? scan shes having a further one end June.
Have a great week-end everyone- we're going to watch my sister Belly dancing to raise funds for brain tumour research! Will have to take some pictures.

FormerMember over 15 years ago

woooo oh gosh, last night haha i dont remember it, maybe a bit too much to drink i think but im guessing i had a good time .
sally glastonbury is going to be amazing i cant wait and yes would be fab to meet up, i am going with'clic sargent' and we get a bit of the vip treatment with back stage passes and we camp backstage too! quite amazing!
dianne - she sounds brilliant 24,000!!!!! and yeah i found that out also, apparently as it effects less people its so much a priority, not very fair! and if she wants to email me or find me on facebook ect its christie_butler_27@hotmail.com i dont think i have an appointment for another scan, i think theyre just going to put me in one if things start to deterriorate
laura - greeeat news congratulations!
take care everyone xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

FormerMember over 15 years ago

Hi all,

Just popped on to say a mega thankyou to you ladies for sponsoring me...means so much. For those of you on FB i will post a few pics of us looking sweaty with red tomato type faces...it will be a sight to behold!

Emma - how cool you and Gayle get to catch up! If your anywhere near glasgow city centre let me know and i'll stop by and put some pennies in the fundraising buckets. Hope today went well and you raised lots of lovely moola for such a good cause xx

Carrie - thank you for taking time to post had been wondering how you were, will you be returning to work on tue? Hope you managed to enjoy the bbq and still manage to take each day one at a time xxxxxx

Gayle - how you doing chum?Hope your feeling better and are able to enjoy some M&M time :) xxx

Lesley - what did you see at the flicks...hope you are ok doll and that dad is settled, nice to hear you got him out for a while again.

LORS - How you doing love? Hope you are ok and your mum is more settledxxx

Susan - Your having such a time of it right now with your dad, I hope they have now managed to get him moved - and yes you really would think that being able to use a syringe driver would be mandatory in nurse training...but who am i to question?? Fingers crossed for good results xxxxx

Diane - yep it is weird about the soup and maybe it does stem from favourite old foods...dad used to give it to us with a buttered roll when we were off sick from school..closesly followed by a cream cookie from the wee bakers in Maybole..good memories (we cant have been that sick :) ) I wonder also if it is because it is sweet that he likes it....i know its full of sugar and he is craving lots of sweet things - no doubt down to his meds!? Hope your having a peaceful weekend, are the kids hitting the books yet? I must admit i would do anything to avoid the books May was always such a nice month with good weather ...how cruel of the SQA to put on exams then when there was so much fun to be had :) xxx

Well as i sit here and type im watching mum and dad sleep on the couch, dad has a urine infection and also a bit of the cold...mum has come out in a rash(!?) they both look trully exhausted.
I came home today to find mum sleeping in the conservatory surrounded by cleaning products and dad in the toilet after having flooded it with shampoo bottles and toilet roll.He'd also had an accident...so on with the rubber gloves and out with the disinfectant, i let mum sleep for an hour before she even knew i was here..which startled her i think as she saw how long she could go without stirring and not knowing what dad was doing. His behaviour is odd now, he fills coffee jars with hot water, opens all cupboard and drawers in the house, turns out all lights or tv's/stereos. He becomes more childlike each time i see him.
Hospice nurse came in yesterday to discuss the 'practicalities' of keeping dad at home. All of the bedrooms in our house are upstairs.. and she said that it would not be suitable to keep him up there...downstairs we have the kitchen bathroom, conservatory and living room....so where do we put the bed????
Im pretty much resolute in my decision to quit my job... mum can't do it all by herself, even with carers.

Ah well...another positive post from me lol

Night all

B

xx

FormerMember over 15 years ago

Becca, you are really having a hard time of it now. I do feel for you. Some of the things you mention your Dad doing, mine has been doing as well, particularly opening drawers and cupboards and leaving them open. He has been transferred to the new ward now but he is very down and keeps ringing my Mum now we have given him a mobile phone, asking her to come and fetch him home and of course that is upsetting Mum.

Paul was very unsteady on his feet this morning and told me he felt dizzy, quite an admission for my favourite "I feel fine" man! I've started him back on Dex today so I hope that will get the dizziness under control again.

Hope everyone is having a good weekend so far.

xxxx

FormerMember over 15 years ago

Laura- Lou, I'm so pleased that you ahve had some good news. There's been a fair amount of good news recently (relatively speaking of course!!!).
My mum STILL has diarrhoea although possibly slightly less then it was. But now the antibiotics are making her feel sick. She's kept up the antisiskcness meds to go with her chemo but maybe she's becoming immune to them. Can that happen? She's now had nearly 3 weeks off the chemo and will see the Consultant on Tuesday again to decide whether she's strong enough to go back on - I very much doubt it. My sister andI have cut down our visits to once a week between us as she doesn't want visitors at all. Tomorrow we are supposed to be going together so that it's just one visit but we both get to go. But I now have a really sore throat, a bad chest and ache all over so I don't dare risk going. Bugger! (Am I allowed to use that word on here or will it get bleeped out??!

FormerMember over 15 years ago

Dear all,

Feel like Ive not posted for ages but just wanted to nip on to say hello. still staying at my mums so is quite difficult to get on - I've had quite a few glasses of vino tonight so am totally unable to recall and mention everyone without missing someone out nodoubt! so will just let you know Im sending you ALL much love tonight. Have been feeling a bit scunnered and deflated of late so havent wanted to come on here feeling all sorry for myself and depressing everyone...its not what we all need. Anyway, please know that your all very much in my thoughts and will post again when in better frame of mind / alcohol free! your all an amazing bunch of people and i honestly feel soooo privelledged to have met you all. enought of my ramblings.....goodnight and godbless to my lovely friends, Gayle, Emma, Becca, Lorraine, Debbie, Diane, Jay, Jo, Izzy, CH, Eileen, Carrie, Rona,Christie, Susan, Laura, Sally...everyone and anyone reading.
goodnight lovely folks.
Lesley
xxxx
ps - Carrie and Emma - so lovely to see you two fantastic ladies posting - what an inspiration o thank you. xxx
also, becca and lorraine - hope you ladies are okay, sorry to hear of the hard times just now.xxx
Gayle, well done to your fantastic hubby on the radio today. xxx

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Glioblastoma Why Why Why <br/>