[RozParticipant]

Hi All

Just wanted to say a big thank you to you all, for trying to keep me sane. I'm loosing it alot now, but know I've got another day booked for all questions and answers; if nothing goes wrong that is.

Trying to write things down to ask for Tuesday is very hard. My mind is in a whirl to know only a few days ago he was on the borderline and now he could have stepped over it. He has deteriated alot in hospital and really and truely I did it, cos I wanted him to live, and his body must have had enough. I just want my husband back, not this confused man full of drugs.

If there is nothing for him now at hospital, he should be allowed to come home, say his goodbyes and die the way we both want! not have to fight cos I'm disabled and can't manage so he may have to go away.
I WANT MY HUSBAND.

Roz

[mhnevillParticipant]

Dear Roz
My heart goes out to you. You are in that dreadful situation of almost beginning to grieve the loss of Michael before it happens. Of course you will be feeling "I want my husband!" You will also worry away at whether you could have stopped him having more treatment which, in the event, hasn't worked and which has resulted in this confusion.
Do try to be kind to yourself. You have only ever wanted what you felt was best for Michael, as you do now. It is this aweful disease that is doing these terrible things to Michael.
I do hope that the Specialist Nurse is coming to the appointment with you on Tuesday – is this tomorrow? It seems to me that you need to make it clear, that if Michael is to come home, you can only manage if he isn't on treatment, and if you are provided with sufficient support in your joint Care Plan to make it possible for you to cope. If they are able to do this. you could find you have some really special and precious days with Michael before you have to say "good bye", but you will need help.
My thoughts and prayers are with you.
Love
Mavis xx

[tomParticipant]

Oh Roz

What a dreaful time you are having.

It's hard to write/remember to ask things I hope it could be sorted by your Nurse, am sure she knows how you both feel at this time?

And please dont punish yourself for doing what you did, it was to Help Michael but with this Bloody disease we dont know what will sort it out all you need to know is that you did it for both of you to help Michael get better.

Good Luck for Tuesday, I will be thinking of you Both

Lots of Love and Hugs to you Both.

Tom xxxx

[shirleyParticipant]

Hi Roz,good idea to write down the things you want to ask,and ask away, i'm so sorry Micheal is still not very good,but please don't go blaming yourself for him being like this,it will only lead you to more stress than you already have,i hope your meeting goes well tomorrow,you take great care and as always stay strong x x Shirls x x

[RozParticipant]

Hi

Tomorrow is canceled meeting next week when our daughter can come with me. Found out alot tonight. Just need everything finalised by his consultant next week.
Revlimid has stopped working like all the others did. He will be coming home to say his goodbyes soon. All carers have to be in a plan first. Think I knew Saturday and thats what finally broke me.

I'll try and keep in touch but at the moment I don't know what to do. Just know we will be seeing his consultant before anything will get sorted.

Thanks every one

Roz

[jmsmythParticipant]

My dear Roz

I really feel for you – you are having such a horrible time. I really don't know what to say to you that would make you feel any better. I hope it is a comfort to you to know that SO many people on the forum or thinking of you both. I hope that you try to take care of yourself as well as caring for Michael. My thoughts and love are with you both.

My very best of love to you both

Love Jean xxxxxxxx

[RozParticipant]

Hi All

Tomorrow is canceled meeting will be next week when our daughter can come with me. Found out alot tonight. Just need everything finalised by his consultant next week. Hope he survives till then
Revlimid has stopped working like all the others did. He will be coming home to say his goodbyes soon. All carers have to be in a plan first. Think I knew Saturday and thats what finally broke me.

I'll try and keep in touch but at the moment I don't know what to do. Just know we will be seeing his consultant before anything will get sorted.

Thanks every one

Roz

[zasrsParticipant]

Dear Roz

Mine and Gordon's thought are with you and your family, just keep writing questions down as you think of them, if you are anything like me i remeber what i wanted to say in the middle of the night, which is no help to anyone.

it so great your daughter will be with you when you have the meeting ask for everthing you can think of to help michael when he comes home if you dont ask you dont get it seems to me.

with love

sarah

[tomParticipant]

Oh Dear Roz

So So Sorry, its a shame that all the meetings get cancelled as it only puts more stress on everyone.

As you Know Our thoughts are with you all.
And a very big special "Cyber hug" WwwwwWwwwwoooooOOOoooSSsssshhhhhHHH sent to you all

Keep writing as and when you can Roz

Lots Of Love
Tom xxx

[suemasonParticipant]

Hi Roz

I'm sorry I haven't replied sooner, I have been ill for over a week with flu. I am so sorry to hear of Michael's deterioration. You asked me how I coped with my husband in the same situation. I too, like yourself was beside myself with heartache seeing the love of my life end up like this. I think you already know that the time is near and its absolutely soul destroying for you seeing Michael in his present state. Gary died in hospital, at the time we were going to discuss him coming home to die but in the end he was far too ill to be moved. He came off Revlamid and all his medication on a Wednesday evening and he passed away on Friday teatime. His body just shut down and he was in no pain as they gave him controlled pain relief. He was very peaceful in the end. You will know when its time, I did. He was in a room of his own (P4 ward) which I requested for dignity, and he was surrounded by all his loved ones, we all stayed at the hospital for 2 nights and the staff were marvellous with us. The only thing I would say is really think about him coming home, looking back I think it would have been much harder to cope with. Its definately not easy for you being disabled yourself, my heart goes out to both of you, nothing anyone can say can make any difference to how you feel. I'm sending a big hug to you both, I really do know how you feel, keep strong Roz, your'e amasing. Take care

Susan Mason xx

[RozParticipant]

Thank you Sue

Due to the situation at hospital, we are not talking to consultant till Monday am. Michael won't know till then not officially anyway, even if he knows deep inside. I've sent the message to our daughter, so we can discuss it together. I hope you don't mind!

I just want to spend the rest of his life with him. So he knows I care. I really really love him and know that he could go at anytime.

Thank you
Roz

[GillParticipant]

Dear Roz just to let you know that,like everybody else, Stephen and are thinking of you both

love from Gill xx

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