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.
Gayle - hope your still enjoying your lovely flowers - your perfume sounds vereeee posh !
Carrie - nice to hear you had a good time with your friends - hope B enjoyed it too and things are ok today. Dont get me started on music- copacobana? That's just the start of it! Everyone thinks ive got the worst taste ever in music, (not that i give a hoot!) everything from the Clash to George Benson lol!
Becca - great to see a post from your goodself! - Glad to hear you had your dad at the beach and had a laugh at your dog! Hopefully the company Gayle used can help you get your dad on his way to SA. lotsa love - keep in touch.
Greentree - how nice your managing to spend quality time with your dad. Ive been on mat leave since my dad was diagnosed and i used to take him to RT everyday - we had a nice routine going and seemed to enjoy it strangely enough. With regards to steroids everybody seems to be different. Some people need a really high dose while others can cope on a very low dose (even none i think). My dad's been on various dosages over the last 8 months - he's currently on 4mg. The medics seems to want them on the lowest dose possible as they come with their own sets of problems but seeing as theyre the thing that helps keep the swelling down then they really are the lesser of two evils? As i say everyone is different so i hope your dad can manage to get down to a dose that suits him.
Well my dad is still in hospital tonight but will definatley be out tomorrow - went up to collect him earlier only to be told that the haematologists want another blood test taken at 9.00pm - luckyily i only live 5 minutes drive from the hospital! Apparantly tests have confirmed he does have small clots on his lung too but the injections he's getting for the clots in his leg should help combat this. Who knows? Feel brighter today (only just!).
Love to Emma, Jay, Karen, Lorraine Izzy (you ok?), Diane and everyone else.
As Rona said it’s at times like this that you realise who your friends are. B’s friend who is coming over from New Zealand is arriving on Thursday and going back on Sunday. I think that’s amazing coming to England from New Zealand for a long weekend.
Rona – I’m so pleased that you’re able to enjoy your time with your dad. How long are you over here? I loved Wellington and would have liked to have spent more time there. Perhaps I’ll get there again someday.
Gayle – Hope you are all well. Has Martine started packing yet? I thought of you this morning when I turned the radio on as the first song I heard was Leann Rymes (is that how you spell her name?) and your song.
Lesley – We saw George Benson live a few years ago, he was fab. Didn’t realise until recently that he played guitar on some Stevie Wonder tracks. We also took the boys to see Earth Wind and Fire which was fun. I’m a bit of a disco girl at heart though and love songs like Heaven Must Be Missing an Angel, from my youth. Glad to hear that they’re not trying to chuck your dad out of hospital this time. Are you reassured by them saying that the medicine he is taking should help the clots on the lungs?
Becca – the photos on your profile are lovely. Your dad looks so proud of all of you. I liked you tale of the dog on the beach.
Jay – thinking of you, I’ve emailed you.
Joan – the clinic sounds like an amazing place and isn’t it wonderful to be looked after? What does a neuro-physiologist do, or are you going there to find out?
Lisa – it was lovely that your dad told you that he loved you. Moments like that become very special don’t they? I hope you’ve been able to get him to eat or drink something today and that he’s feeling more comfortable.
Diane – I saw a recent post of yours on We Talk Brain Tumours and it sounds like you’re going through a particularly horrible time at the moment. Thinking of you and sending you a big hug.
Emma – Hope Matthew’s ok today. Did you ring the hospital in the end? Are you back there again on Thursday? Thinking of you.
Karen – hope you’re bearing up.
Izzy – thinking about you lots. I hope things are ok with you as you’ve been very quiet lately. Sending you big hugs.
B’s care had been upped from three to four times a day. I hope that will make him feel more comfortable. The carers we have coming in are so good with him.
Off to bed now. I’ve almost finished a really good book. I want to find out what happens but at the same time I don’t want to get to the end.
Big hugs to all of you and thinking of all of you even if I may not have mentioned you personally.
Carrie - that is one hell of a friend to travel from the other side of the world for a few days - he must really treasure B, that is so lovely. I saw the man himself (George B!) a few years ago too...im so jealous of you seeing Stevie wonder, he is just fantastic.... A song that always cheers me up is isnt she lovely.! I think Im happy with what the nursing staff have told us....i think?! will see how the rest of the week pans out..time will tell.
Gnight, im away for a read too - i read every night in bed...its the only thing that chills me out...although my books are always about serial killers so im not sure if "chill" would be the right word!
Lesley - Can't do the serial killer types books at the moment. Mine have to be all soft and fluffy.
Stevie was fantastic. If he comes over again try your hardest to get to see him, I don't think you'll be disappointed. He's just bought out a DVD of one of his O2 concerts called Live at Last.
Gayle – Thinking of you guy's hope you are okay and your preparations are going well
Lesley – sorry to here about your Dad hoping they get those clots sorted as soon as possible
Lisa hope you Dad has managed some nutrients today... it is so hard when they are not eating /drinking
Emma, how are you and Matthew??
Izzy - How are things, sending love your way
Becca, Rona, Joan, Di, Karen Hope you are all okay and you special people are as comfortable as they can be
Jon is not eating now and things are forwarding fast... I have arranged a care plan someone to help in the once in the morning and evening as he is not able to move and no communication is so very sad and so bloody cruel... I am missing my lovely cuddles and beautiful smiles
Hoping you all have a peaceful night (me included)
Jay, hope Jon had a peaceful night and you managed some sleep - so saddened to hear of what is happening to you both right now - yes, this disease is beyond cruel, I still feel angry at the unfairness of it all and what it does to our loved ones. big hugs
Wishing everyone else a peaceful today - going up shortly to collect my dad so hoping he's improved enough to come out.
Lesley xx
ps - carrie, barry manilow was just on GMTV - hearing him sing Mandy has cheered me up a bit! xx
so sad to read your post, hope you and Jon had a peaceful night, this disease is so bloody cruel and unfair, why do all our loved ones have to suffer such pain and us too having too see it, thinking of you both. xxx
To all my other lovely friends you are all in my thoughts.
Morning all Sorry not read all the posts - matthew isnt good this morning - but the little so and so has gone to work - his speach is bad - the words are all wrong and a little slurred at times, he also has just told me that he is seeing things out of his right hand eye like the picutres flying off the wall and zooming past him - well at least I think that is what he meant. Have called the hospital and am waiting for a dr to call me back - this is what happened last time in nov when he was bad - just hoping its cause they have reduced the dex too soon - will keep you posted but am worried as everything was so positive last week.
Oh Emma I'm thinking of you this morning. I hope the hospital ring you soon and are helpful. It must be so hard to see him go out to work when you know he's not right. he sounds very determined. I really hope everything is ok. Maybe he needs a bit more dex as you say.
Jay thinking of you too and hope the night was ok. It is so unfair this illness.
Carrie I can't believe he is just coming over for 3 days!!! Wow.
Hey Emma - hope its as you say and maybe the dex has been reduced too quickly....we know all to well the havoc that a reduction in steroids can induce. Still away to work? What a man he is. Keep us posted.
