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.
Hello, sorry not posted today, been busy spring cleaning and mowing the lawns which put my lights out and kicked started my hayfever, I have been sneezing all night and Stephen thinks its funny.
Gayle sounds like Martin is feeling a little better if he wants to play with his cars, I will know when Stephen starts getting better I will have golf clubs taking over my house. Love to you all as always. xxxxxxxxx
Carrie my thoughts and prayers are with you both, sending you lots of ((((((((((((hugs))))))))) xxxxxxxxx
Eileen isnt it just wonderful driving with the music up full pelt, when I am really stressed thats what I like doing the most, it makes you feel so much better. Saying that I once got stopped by the police for it apparantly it is an offence, fortunately he didnt book me, I think it was cos I smiled really nice at him and told him how I sorry I was. xxxxxxxxxx
Christie hope you are feeling ok and have a nice weekend xxxxxxxx
Hello all - for almost 2 years I have been scanning the different discussion groups and have only just plucked up the courage and read up on how this operates now, but what I can say is what a comfort and source of great information reading all the profiles and postings have been to me. I thank you all for that. There have been many many sad stories I have read and its just been an education to me, also how you have all coped under such difficult circumstances with great courage. My journey started in July 2007, my dear sister was diagnosed with Grade 1V Glioblastoma and if you read my profile, there have been many up and downs but thats 21 months ago, so although I do not know my sisters prognoisis (nor does she, as she just doesnt want to know) it seems to me that she has done remarkably well given what I have read. Her operation way back in July 2007 was very successful, and has received all the recomended treatment i.e. operation, radiation, and temolozide chemo. Sadly though in Feb we were told that the tumour has returned, (1cm) and has just finished her 1st cycle of PCV chemo. I do not know how successful this treatment is and what is ahead, but what I do know she has been remarkably in good humour and has been positive and always as much as possible ready for the road! I just felt like sharing my story with you and to give some hope, that you can maybe live longer now with the advancement of treatment. My love and heart goes out to all who are affected with this and especially to the carers. My prayers are with you all. God bless xxxxxxx
hi Gayle, yes the bed is great, makes life easier and seems very comfortable. As is our couch! ( for me!) we had an appointment at beatson on tuesday coming but I have cancelled it as hubby too weak to go, and now that they have decided no more chemo there's little point as there is nothing else they can do there in terms of treatment, seems to be over to the palliative care team and community services now. thank you for passing on Emma's news, I'm sure we all think of her every day jsut now.
Carrie, I'm so sorry to hear your news, I'll be thinking of you and B, hoping for a peaceful time for B, you will continue to do all you can for him I know.
hi susan, that balloon is jinxed for sure. re the bed, the only reason it is on our front room is that hubby was in our own bed upstairs and couldn't be moved out safely whilst we dismantled the bed and made space for the new one - it arrived in several bits and could quite easily be put upstairs, - it was just that the nurses didn't want to risk lifting hubby as he is so immobile now, so once the bed was ready they sent 2 very helpful ambulance men who brought him downstairs with their special chair and bodily lifted him into the bed where he has been since! so if you have space upstairs for a single bed and a fold up one for you there should be no problem, if the time comes - but it may never come to that, these things are so unpredictable as you know.
hi suzanne, our posts crossed. thank you for sharing your sister's story, I'm sure it will give much hope to many who are just starting out on this journey. I hope she continues to do well - maybe they will operate again if the chemo doesn't help? It's heartening to hear of someone doing so well, even for those of us whose loved ones are not so good just now. do keep posting, you'll find it helps, an dI'm sure you have lots of experience and knowledge to share with us too! to my knowledge you are our first poster from Ireland on this thread ( I'm ready to be corrected!) so welcome love Dianexx
Carrie I'm so sorry to hear that B has deteriorated. I hope the syringe driver is making him comfortable and that you are ok. My thoughts are with you.
Gayle thanks for updating us about Emma. Emma thinking of you and your family as always. That sounds great that you can stay with Matthew in the hospice - they are wonderful places.
Just to let you know I won't be on here for a bit now as me and my little boy are starting our journey back to New Zealand. We have a couple of days at my FIL's house first and then fly on Sun night. It will be hard to say goodbye to my Dad. Have spent today stocking him up with food and doing cleaning & washing etc. I do find it so hard that he lives alone. I can't help thinking that I have no idea what we will do in the future if/when things deteriorate...
Hugs to you all and I look forward to catching up later next week xxx
HI everyone Just a super fast one from me - I came home last night to get some sleep as matthew was really aggitated and I was making it worse - he has 1 to 1 nurse at the moment as he is a danger to himself at the moment - it is heartbreaking to see the man you love behaving like that, he is so confused and doing all sorts of odd things, its a cruel disease. Matthew was given so much sedative to knock him out last night think there was enought to knock us all out - shows what a fighter of a hubbie i have. I know i did the right thing agreeing to the hospice i couldnt of coped with him at home at all, there isnt 24 hour care you can call on in our area and once the twilight nurses have finished ur on ur own except for the emergency call out doc who took 2 hours to come over and then did nothing!?!?!
Anyway he has had a peaceful night - they were concerned about his breathing in the night but could be the disease that makes his breathing like that or could be the drugs - they do think it wont be long so not sure i will come home tonight - I will keep texting gayle and julie to keep you all posted - i cant thank you all for your support - i can feel the love honest!
Have had a quick scan and cant reply to you all but carrie looks like we are in a simialr situation - hats off to you for managing b at home - but big huge massive hug from me - will be thinking of you xxxxxxxx
Emma - just to say my heart is so with you all the way love - thanks to Gayle and Julie for keeping us posted. I hope Matthew is comfortable that's so good you can stay there too, - hope your wee ones are ok. xx
Carrie - I mustve missed you post about B (this is the first time ive been on in a few days and its amazing how quickly you can lose track) - I've just picked up from Emma's post that B is in a similar situation - much love to you too right now.
Eileen - thanks for sharing your story - your sister sounds like she has done very well so far, its always hopeful for other people to hear.
Susan - hello to you 3rd time this trip has been cancelled...oh dear. ps - won a game of scrabble believe it or not!!
Gayle - hope Matthew has picked up - I've not been on facebook so must get on soon and see your pics.
Sally - it was me who was organising the birthday party for my 4 year old - it was yesterday - she had a great day but i took the easier (lazy) option and had it at a soft play area with face painting - hats off to you for doing the pass the parcel etc - hope your wee one has a fab day, knights and princesses sound great fun!. We were there till 9.30 last night as there was a bar for adults - oh dear!
Well my dad is still in hospital - he's not going to hospice right now as the scan showed the BT was still stable and it was the swelling causing all the probs - he's on 8mg dex now which was reduced from 12mg - he's 60 on Monday but looks like he'll still be in hospital - im grateful he'll be here for it as we were told last week it was the start of the decline but he's come back for the moment and for that were grateful. His leg is still hugely swollen and theyre not sure if it'll ever go down.
sorry to read of all the sadness going on in so many lives just now, sometimes I still have to pinch myself that this is all real. Unfortunatley it is all toooo real. thinking of everyone and will catch up later - hope you all have as peacful weekend as possible. xxxxx
Emma, nice to see you posting wish it was under much better circumstances, glad you managed to get a little sleep and Mathew too, sending you lots of love and thoughts. xxxxx
Carrie, sending love to you and B too, hope you both had a comfortable night. xxxxx
Lesley, glad Ambers party went well, there would have to be a bar there lol, glad to hear your dads tumour is still stable, and that he is a little better, you should take a big birthday cake up to the hospital on monday. xxxx
Sally, hope your wee one enjoys the party. xxx
Julie, hope you and Stephen are well and hope the fruit juices help a little. xxx
Joan, hope David and you are well. xxx
Izzy, you are really worrying us all. xxx
Jay, ((((bighugs))))
Diane, hope things are a little better for all of you today, bet you have horrible nasty weather the same as us, Martine is away to Louden Castle with friends against my wishes, her dad said she deserved to go she will come home with the flu grrrrrr.
Rona, Sue, Christie, Reland, Eileen and anyone else that I have missed sending you all love for a peaceful weekend.
