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.
Thank you Martin. My brother has bough him a tablet dispenser thing so I hope it helps. It's mainly the temozolomide which he finds confusing and you can't put that into a pill box. Gosh 15 tablets that must be hard. My Dad is trying hard to get rid of any tablets which aren't completely necessary and is almost down to just his dex (well until the next round of temodal...) Hope that lasts for a while.
It's quiet on here - hope that means you are all enjoying the bank holiday weekend.
(have just read your profile for the first time Martin. What a lot you've all been through. B is lucky to have such great support from you. I really hope the avastin helps and she remains well for a long time to come. Big hugs)
Hi everyone, not been on site for weeks as Rob has not been too good, think the building of the conservatory (which is finished) was a bit too much for him, people coming and going all the time really confused him. Been trying to read all the posts but gave up as eyes now crossed but I will say Diane I am soo sorry to hear your news and hope you are bearing up ok and also you Becca, I also had a good cry what lovely things to say, your Dad would have been proud of you all, I'm sure he would be listening. Anyway this is just a quickie to let you all know Rob and I are still around!!!
Julie there's a pm for you. Gayle, Susan, GreenTree, Woody all of you take care my thoughts with you all Eileen xx
Just a very short post from me, had a very tiring weekend.
Becca, read you post and it brought tears to my eyes, love to you and your lovely family. xx
Martin, just read your profile, you have all been through such alot what a fighter Becky is, goodluck with avastin, I have heard many good reports about it. xx
Lesley and Lorraine, hope both your Dad and mum are both doing well and the rest of you too, are you two still going to the western general next week. xx
Rona, hope all is well in NZ, not long till you come over now. xx
Eileen, nice to hear from you sorr Rob not been so well. xx
Susan, thank goodness you made your balloon ride, hope it was fun. xx
Joan, how are you not heard from you for a few days. xx
Diane, Carrie, Jay Emma and everyone else take care thinking of you all.
Just wanted to po on quickly to say a big thanks to everyone for such lovely kind words of comfort and support in past few weeks. LORS - How are you doing love? How is mum?xxx Lesley - thanks for the texts love they mean a lot, sorry i havent always responded. How is dad and how are you? Is it ok being back at work? xxx Gayle - bet you had a good day on Sunday :) to be honest i've paid sod all attention to the league this year but am quite glad strachans gone. How is Martin and Martine?? Are we all stil on for a meet in the next few weeks? I thought the date was changed to sometime in June, I may be away first week so wanted to check. Thanks again for lovely card - however did you get my addresss? lol xxxx Green tree - hope you are doing ok love xxxxxxx Emma - loved your pics, it looks like you got a lovely day for it. Hope you are taking it easy xxxxx Carrie - How are you? Hope you are doing ok and being back at work is helping in a way xxx Eileen - Hope you are doing ok xx
Its been a hazy whirlwind of time lately for us, cards keep coming as do flowers. We visit dad every day, we picked a spot where he can see the memorial park where he loved to walk seamus, its in view of the house he was born in and the cottage in the hills where he and mum lived when they were first married. We haven't at all began to deal with it though and are just waiting for something to happen!? But we will be going to Italy on Saturday in an attempt to getaway from everyone and everything...lovely people keep popping round and come in and want to tak about dad and how they never knew how ill he was, its the re-hashing of it and going over everything which we cant bare - hence the departure.
Glad you got the card, one of my old work colleages stays in Maybole and he knows your family, got your address from him love, hope you and your lovely family are coping. Had a nice day and night on saturday, although you must have had alot more on your mind.
Posting from Mum and Dad's again as PC away to get repaired again.
Becca - Lovely to hear from you, enjoy your time in Italy, I have already said to Scott and Dad when I am in the same boat as you I will want to get away from it all too, can actually do with that the now but there is no way possible I could leave Mum, I will update about her at end of post, Fraser's euology to your Dad had been crying it was so beautiful and you must be so proud of your brother and your lovely Dad love to your Mum and Rachel too thinking of you so much as you try to get on with things, treasure the memories Becca they are priceless and only yours x
Gayle - Bet you were a happy bear on Sunday when your team won the league, hope you had a lovely time at the caravan, yeah I am still up for next Tuesday at the Western but all depends on Mum really but I would love to go, chat to you soon x
Lesley - I will be in touch once I know more re Tuesday at the Western, hope your self defence went ok tonite and your dear Dad is aswell as he can be x
Susan - Glad you got your balloon trip at last, it must have been amazing, enjoy Bonnie Scotland for your hols x
Rona - Bet its so worrying being so far away from your Dad be lovely once your back beside him again for a few weeks. x
Diane - Thinking of you so much, hope you and the kids are aswell as you can be and your Mum is helping with the garden, understand what you meant re the clothes, maybe that was on other thread but I read both and can't remember what was said on what.
Christie - How are you doing this week love, hope the sore heads are better x
Emma, Carrie, Jay and all you other lovely folk I send all my best to you all.
Update re Mum, well folks things are going downhill quite dramatically here, Mum has been in bed (hospital one) for 2 weeks now, I personally don't think she will get up again from it, mac nurse swithered on upping her steriods but spoke with the consultant at the hospice and they have decided against it as it would leave her more prone to those infections, her chest infection has cleared a little but she is so weak that I doubt she would be able to stand to be transferred now into the seat/commode etc, we have lovely nurses coming in 3 times a day, morning, afternoon then night and a hoist that we are able to use to lift her to wash her or clean her which does help but she does not like in it one bit, my work know the situation I am, I am still there as I feel it keeps me sane as I do struggle to cope sometimes when I just sit and watch her and I spend every evening with Mum so I don't feel I am neglecting her but I know in my heart I will be giving it up soon, the mac nurse was honest with us and said that her brain will eventually just close down bit by bit how long that will take who knows, she is also starting to take longer to swallow etc, does not sleep as often as she did when she had chest infection but she sleeping a fair bit thru the day and all night, she still eating a fair bit and smiling at me so those are the little things for now that keep me going and I am just taking a day at a time.
2 years ago tonight I left the Western General in Edinburgh breaking my heart as she was getting prepared for brain surgery and that night I lay in bed full of hope that once they had removed the tumour my Mum would be well again oh if only ........................ it hurts so much to think in those 2 years the amount of people I have met thru the mac site and who have lost their loved ones to this dreadful illness.
hello all Becca, I know just what you mean, would love to up sticks and get away myself! I hope you have a restful time in Italy. I have to wait till kids school term ends, then we're off to see hubby's parents in Malaysia, that will be very emotional and perhaps not the rest we need, but I feel we must go for their sake, it's so hard for them coming to terms with all of it and not having been able to be here to say goodbyes. But I plan to do some day trips just to get away, visit some old haunts of ours around Cowal which is only a short drive away. I too have a lot of people popping round, invites here there and everywhere, people mean well but I'm fed up of phone calls, often 2 or 3 a nihgt, asking how I am, how I'm coping etc etc. i suppose I shouldn't complain as it would be worse if nobody bothered but sometimes its just too much, I don't want to go over it again as I have to tell everyone I'm ok when I'm not really! so I jsut try to move the conversation to other things.
Lorraine, sorry to hear your mum is so weak now. I hope she is comfortable. We never used a hoist for my hubby, the carers just used to roll him over to one side at a time to change or clean him, it did take two of them to do it properly but did not seem to distress him. You'll know when the time is right to stop work. Things can change so quickly with this illness can't they.
Gayle, hope both your Ms are doing well and you enjoyed the long weekend. Susan , your balloon trip looks fab, what a great memory to have made. I loved your description of the basket gently tipping over!
I do read every day but it seems to take me about 4 or 5 days in between my postings to actually write anything. I feel a bit like LORS I think - it just all seems such a desperate situation. My mums is now so miserable it's not true. She has pretty much lost most of her sight and is very very breathless, but doesn't know why. Consequently she can't do anything. She can only manage about 5 minutes onthe phone or with a visitor. For some reason she can't bear to listen to music, although her life has always been full of music - she was still singing with Gloucester Choral Society in January. She can mange the television for about 10 minutes before she loses concentration or can't bear for it to be on. But she's also so bored when she is awake. She has been put back onto 2mg of dexamathasone, but we haven't told her as she had the most horrendous hallucinations when she was taling it after her debaulk, and teh doctors then said they were due to teh dexamethasone. She finished her RT nearly 2 weeks ago, so we are hoping that she shouldbe showing small signs of improvemnet as the effects wear off. I went to see her on Saturday and she insisted on walking through her house and pointing out everything taht belongs to her (she remarried 14 years ago so some stuff came from her husband and some is joint) and then making her husband write a list of what I wanted to make sure it goes in her new will. It absolutely broke my apart. We had to stop in the end as I was so upset. But she also wants to make sure taht me and my sister get what we want and we know what belongs to our family!! Hideous!
Daisycat - whereabouts in Malaysia are you going? Was your husband Malay? I lived in Malaysia for 2 years - KK in Sabah on Borneo. I would love to go back - if only just to eat the food again - YUM!!!!
Hi Sallye,From what I can remember I think that about three weeks after RT has finished is the worse time.I know it seems that once the treatment has finished the person should start to feel better but Im sure our oncologist said that we shouldnt be surprised if my Husband felt worse at three weeks after treatment ended.Just maybe if you know it can be normal to feel like that it wont be so worrying for you.My Husband also has GBM and had 6 weeks of RT combined with Temozolomide. Now just starting 3rd cycle of 5/23 regime of Temozolomide and doing well. x x
