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.
So nice to hear from, think of you and the kids often, hope you get back to some kind of routine with going back to work, big hugs to you and the kids. xxxx
Lorraine, thinking of you hun. xxxxx
CH, thinking of B and you tonight keep fighting on.
Thanks to each and everyone of you for all your kind thoughts at this very sad time.
No change in Mum she has not ate since last Fri and we now have her epilim in liquid form as she can't swallow her tablets anymore plus we got diazpham incase she fits and we have to just inject her with this as there will be no paramedics or hospitals etc involved, its so so sad folks to just sit by her bedside and she no longer says much last nite Scott asked her if she loved her girl though and she managed a yes (which I know she does anyway just like how I love her and just can't yet comprehend what life is gonna be like without her).
GP signed me off for 6 weeks for those of you who thought I was giving up work thats not what I meant I knew the time would come one day when I would not be able to go and that time was Monday I knew once my angel stopped eating, the time would be imminent and no way could I face going to work, my job does not ential behind the scenes as such either I work for the local council and my team deals with Housing, Social Work, Fire and Police so as you can imagine its constantly busy and dealing with the clients, however my service manager and team leader have both been in touch and said not to worry about work this is the time I need to be with my family.
Gayle - Hope Martin has picked up a little think I just missed you on FB last nite, I was getting my feet washed by Scott as they were black as I don't think twice these days and run outside to the wheely with Mum's pads etc and I was also putting washing out for Dad with bare feet, chat soon.
Lesley - Sorry to hear your Dad has taken a turn for the worse again, its just awful aint' it, yeah think Joe must have put your phone in the bin eh, thanks for you kind thoughts pal.
Becca - Just a quick hello as I have PM you as we spoke about yesterday.
Diane - Thinking about you as you return to work, I don't want to be off for long as having some kind of normality always helps I think, hope your trying to get on with things the best you can, thanks for your thoughts.
CH - Sorry to hear the scan was not the best of news yesterday you seem so positive which is the right way to be god bless you and B whatever the future may hold.
Susan - So sorry to hear of your Dad's decline it must be hard enough for you dealing with BT world and now your poor Dad too, life is so unfair so glad you enjoyed your break in my homeland of Bonnie Scotland.
Dianne J/Christine - Hope you 2 youngsters are doing well.
Rona - That was great news about your Dad bet your so glad your with him.
Well folks I know I have probably missed a few of you but please forgive me as my mind is always elsewhere these days as not sleeping at all, and so tired, GP prescribed sleeping pills but I am trying to not take them as don't want hooked when Mum was first diagonsed I took them and boy it took me a while to adjust and I have to think of when I do return to work I drive at 7 am!!
I will keep you all posted when I can of Mum but I am with her most of the time as I want to treasure every second I have left.
Thanks again folks for being there without you's I know I would be alot worse.
Lorraine, (((((((bighugs))))))), I can feel your pain from your post, so very sorry that you are in this position thinking of you, your mum and dad and Scott love to you all, here for you anytime.
DN's have just put a syringer driver in Mum, oh folks I am such a mess I know its not gonna be long now, I hope I find the strength from somewhere.
Mac nurse has been with us all morning, she even had some lunch with us which was nice and we spoke about Mum when it was the good old days, when we went trips abroad etc, Mum has a little doll beside her called 'ibby' who came all the way from Ibiza and I sit and talk to her about that holiday especially when the four of us all trekked for ages to a nudist beach i had blisters galore and when we got there is was all full of males so you could tell Scott and Dad were well not amused!! not that we are in to that we were just being 4 nosey bug****. Mum loves this little doll so I have decided it will be going with her when the time comes, I have also been thinking of other things that I want to go with her too plus I have wrote her a letter and a photo of us all, and I have alot of things to do that I am gonna make a shrine to her in the house and also get a big photo enlarged so I can speak to her everyday, she is on my desk at work and in a locket round my neck so she is with me always.
I said to the mac nurse that I will be no longer attending the Brain Tumour Support Group which I do thoroughly enjoy but no way can I go and sit with those lovely people when they still have hope and I have none now so I will just be going along to Maggies separate for counselling when I feel I need it, my work also has a counselling service and I am gonna take everything going so I can try and build my life back up a little as the last 2 years it has been just going on with nothing really in it.
Folks I can't say nothing else I want to thank you all for being there for me, most of you are just like proper friends now and I can't thank you enough for being there for me.
Lorraine U are being truly amazing - no words can describe how you are feeling I know - but I couldnt read today and not post - Matthew had syringe driver and to be honest it was the best thing, he was kept out of pain and still sometimes managed to say the odd word, he also didnt eat or drink for over a week, I just wanted to really say I am really thinking about you (((((((((((((((((((((MASSIVE HUG))))))))))))))))))
To all my other lovely friends - much love to you all on this non stop rollercoaster.
Hi Joan, thanks for popping over! It can get confusing some days on two threads. Yes the fragility of coping mechanisms also amazes me but then also how strong they can be if that makes any sense at all. We both have our Optimism Cloaks firmly back on today! If I remember correctly, a long time ago we likened it to Alice in Wonderland believing three impossible things before breakfast. Your post gave me a real lift. Thanks. Long may your good period continue. (I keep the grape pip extract at the ready.) Love, CHxx
Gayle, I hope Martin continues to feel a little better. Did he have a decent meal again today. If his knees are giving him lots of pain, is the GP recommending any pain management. Our oncologist advised Becky to take Glucosamine for her cartilage in her ankles and knees as these can be damaged by the dexamethasone. There are two problems with this, firstly it a takes a long time to help. and secondly they are like big horse tablets! She's still taking them. Becky also eats raw garlic every day as we read a research paper that said it releases an enzyme that suppresses the growth of GBM (and it keeps the bats away).
Lorraine, thinking of you and the rest of your family ((((((((bighugs))))))) to you all, hope your mum is comfortable. xxxxx
Martin, thanks very much for the info, Martin managed to eat again yesterday thankfully our gp gave us tabs to give him 1 hour before meals they seem to be helping, he is not eating normally but there is an improvement thankfully. I have just told Martin about the raw garlic, we will be trying it anything that helps eh?? love to you and Becky. xxxx
I've just been reading your profile and so sorry to hear of your loss. I can't believe how quickly this horrible disease can change, just when people seem to get a bit of hope the worst happens and it returns. We got married 3 weeks ago after 16years together because your way of thinking totally changes when you're up against something like this, the things you thought before did'nt matter suddenly seem so important. My husband had his 1st course of the 6 monthly chemo beginning of this month and we are just hoping and praying that we can keep this thing at bay as long as possible.
Sorry that you find yourself here, its such a horrible disease, you find lots of support from many people here in similar situations, Emma and Mathews jounrney has touched us all, he fought so hard they are both such an inspiration to so many on here, Emma still pops on to help us all and even answers the phone to me in the middle of the night when I need her (sorry hun). Love to you and your family, please keep posting it will help you.
