[RozParticipant]

Hi All

Thought I'd let you all know, I'm up waiting for D day.

My carer comes at 7.30am,driver at 8.45am. I'll get to hospital around 10am. Then the waiting comes.

I've not got a clue what to say. I don't even know how we will get through to Michael. See how he responds I suppose. I just don't know what other treatment there is other than what he is having.

Got plenty of tissues just incase, but if he refuses to take any more treatment then I suppose that will be that.

Should be home knackered around 5pm, hoping it's earlier if my driver can get earlier. Then I'll need the toilet, ([i]still got to work out how I'll go [i][/i]at hospital[/i], [i]it was easy when he had his own room[/i])
I'll need a drink of tea, and a lie down. Then alot of sobbing if they give results I've been told before.

I'll let you know when I can

Cheers (I may be wine-ing it tonight)

Love Roz

[brochoParticipant]

Hi Roz thinking of you and Michsel today .I am really hoping the meeting will be about what they can do for him and that Michael accepts advice given love Bridget

[GillParticipant]

Fingers crossed for you both
love gillx

[tomParticipant]

Hi Roz

I hope all went well for you both, dont forget if you want a chat Email me on t.lappin1@ntlworld.com 😀

Cyber hug on its way :::::WwwwwwooooOOooooSSSSsssshhHHhhh now you both have the "Cyber hug"

Love and good luck to you both

Tom xxxxx

[RozParticipant]

Guess What

It never happened!!!! Istayed all day and his consultant was at a meeting all day.

Cr– day, really really had enough. Done in, legs massive. Never got to loo till driver came at 4pm.

Isn't life sweet. I've left a message wiyh Andrea his nurse ( She was good today) I've said on message I can not do this any more even if Michael was in Doncaster, I've had it, I'm worn out.

Going back to lie down. Tom I may email you tomorrow. See how I am.

Thanks all

Roz

[ElizellenParticipant]

Oh, Roz!!!

Sending cyberhugs and prayers your way.

{{{{{{{{Roz}}}}}}}}

Eliz
XX
X

[tomParticipant]

Oh Bless you Both Roz

Its bloomin hard work for you both at the moment:-(

And Roz you Email me when your ready 😀

WWwwwwwwHHHhhhhhOooooooooSSSssHHHhhh and you know wot that is xxx

[GillParticipant]

Hi Roz

I just wondered if things are any better. Post when you can. You know we are all thinking of you

Love from Gillxx

[RozParticipant]

Thanks All

Still in agony. Rested most of yesterday, doing the same this morn, then afternoon at the mad house.

I found out from Andrea his nurse, that the nurses just think Michael is a bit odd, and always like it. I cannot believe they cannot remember the proper Michael and he is not this confused man who is in their ward. It stinks, how they just expect me to do everything when I'm there. THIS MAN IS NOT THE REAL MICHAEL. AND THEY SHOULD KNOW.

Andrea thinks I need a break. Thats easy isn't it when your disabled and your husband is in hospital.

Sorry if I sound bitter, but I don't know what to do any more.

Roz

[brochoParticipant]

Good morning Roz no wonder you are exhausted, even the fittest of people would be drained by everything you are going through So Andrea is probably right you need to recharge your batteries to fight the next battle for Michael Who goes to see Michael on the days you dont? I was wondering if they could speak to the nurses as well to help you get them to understand Michael is not himself,the more people the better really Is there a patient advocate service? I feel you need someone who can , a professional who could help in things like making sure meetings are kept especially the one you were due to have the other dayIts unforgivable that you have both been left in limbo yet again and if I were in your shoes I would take a break to gather all my strength then demand an urgent meeting with the consultant whose duty it is to keep you fully informed as to plans for Michaels treatment .I hope you are feeling less uncomfortable today and you can rest without feeling guilty because you shouldnt at all !! We are all behind you Roz hang in there , get your strength back and demand your due , for you and Michael love Bridgetx

[tomParticipant]

Hi Roz

Just let me say first, You dont sound "Bitter" You sound well and truly let down and P.s.s.ed off:-S

What you both are going through is bloomin hard, what you need to do is get some rest, yes I know its easyer said than done but you have to make a point of getting it you are going to be no good yourself doing what you have been doing.

Take Care and a "Cyber Hug" On its way WWwwwwwwOoooooSSssssHHhhhh and its got a kiss with it

Tom xxxx

[RobertaParticipant]

Dear Roz. I just wanted to let you know I think you are wonderful. You are doing such a great job in these difficult circumstances. love Roberta XX

[RozParticipant]

Thanks

Been again this afternoon. They are going to do a septic screening on him yet again, so once again something is not hitting the spot.

He's lost more weight, his arm is bigger than his body.

I broke down tonight, so do not know how long I can go on.

Thanks for the encouragement

Roz

[tomParticipant]

Hi Roz

Well once again you are hit with the S H I T

But must be honest I lost god knows how much weight during my CTD and I never thought it would come back 🙁 but lo and behold it came back with a vengence, so am hoping Micheal will do the same also.

Love and hugs from iccle ole me 🙂

[RozParticipant]

Thanks Tom

Michael lost weight then too but now there is nothing on him at all. Its no wonder he screams when he gets washed and stuff. His ribs stick out and where his stomach was just sinks, he's not just flat it sinks inwards.

When they have done this septic screening it will mean more different antibiotics, I suppose and a longer stay in hospital. It may sound horrible but I wish he could just go over the borderline he is on, then he could say his goodbyes at home and [u][b]no longer suffer[/b][/u]

I really lost it last night. so don't know how much more I can take, just watching him like this is soul destroying.

Roz

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