[RozParticipant]

Thanks Mavis,

Went to see him again yesterday. He's starting to get me confused now! He tells me he's fit enough to come home, and his nurse tells me different.

Tomorrow is D day. So after frank discussion with his consultant and nurse we should know how things stand. I say we but its really I.

All the best
Roz

[RozParticipant]

Thanks Lynn

Think Michael has nearly tried the lot and nothing seems to work

roz

[RozParticipant]

Thanks Sue,Tom

Please don't take this the wrong way, and I'm truely sorry if I upset you but how long did Gary survive after going like this? Please don't answer if its too painfull I understand I just seem to want to know all the time! I keep saying to them how long? But noone can say.

Michael phoned me twice yesterday, once in the afternoon around 4.20pm to see where I was. He wouldn't believe I'd been the day before plus all the confusing things, then he fell out with me cos I wouldn't fetch him home. He then phoned when I was in bed around 11pm. He wanted his radio, which he already has got. I told him I'd look for it when I came but that was too late he said.
My mind was in a whirl all night but I was determined to get more sleep than the night before.

Thanks for listening

Love to you and the hug was needed.
Roz

Tom thanks for being there, you seem to know when a hug is needed, They are great.

Roz

[RozParticipant]

Thank you All

I keep raising a cup of Tea, so maybe I should change to coffee!!

Spoke to his nurse today and it's going to be hard making him understand how things are with him. We are to just keep repeating till he hopefully gets the gist. He got another infection over the weekend so lets keep our fingers crossed that they keep his myeloma down, otherwise we have had it.

Roz

[RozParticipant]

Hi All

Went to see Michael today. He is still in and out of confusion.So the visit wasn't what I was expecting. I'd spoke to him earlier in the day and he was looking forward to seeing me, but things never went that way.
The doctor told me he has delirium because of his chronic infections.
Nothing more to add really.
I'm feeling down after the visit, probably thinking after not seeing me for so long thinks would have been better. I keep saying to myself what people keep saying to me : "Remember it's not him talking it's the myeloma, his tablets or infections", but it's getting harder and harder to bear.

Roz

[RozParticipant]

Hi David

Sorry for not wishing you all the best before now.
Reading your posts remind me so of Michael last year.
Keep smiling even though your mouth is probably sore.

Luv
Roz

[RozParticipant]

A big thank you from me too:-)
Roz

[RozParticipant]

Thanks Tom and Michelle,

Hopefully I'm going tomorrow lunch time!! It's been along time since I've seen him, the proper him that is, not the confused man I saw a week agao.
Yes Michelle it is Andrea, is she your mums nurse too?
Weather permitting last Thursdays meeting will be on this Thursday too.
Alot to take in this week.

Love to you all and Tom your hugs keep me going.

Roz

[RozParticipant]

Thanks Tom

Think you know I needed that. I'm really truely loosing it now, I don't know I'll manage on my own any more.

Having spoke to Michael's nurse again yesterday, I can honestly say his arm is a no win situation. So thats that…

I'm begining to feel it now and it feels like forever since I saw him.

Thanks for hug
Roz

[RozParticipant]

Thanks Sue

Michael's nurse will be there with us too.

Roz

[RozParticipant]

Hi

Last week we got told Michael's Myeloma was improving but his arm is the main source for all his infections. Plus the side effects of all his drugs.
The antibiotic given via his hickman line straight through is different to the ones tablet form.
Michael suffers with all sorts of problems from the anti-biotics which I haven't mentioned and we have been told coming home on the tablet form, highest they can find will also course him probs and he will not have much of a life.

We also got told if Michael came home, he'd be straight back in ten times worse and he may not survive. That is why a plan has to be sorted so Michael has a life and survives. Otherwise we all no what will happen.

That is why only Michael's consultant can advice us along the way.

Michael has had Velcade and the side effects were so great they made him really really poorly. He is now on Revlimid for life now, because Michael's body just fights all medication. Its working for the myeloma but not helping any of his viruses.
We got told the other day his arm has never been so bad!

So maybe I am looking negativly, but everything Michael has tried never works longer than 3-6 months. In 2 years he has had all types of chemo, high chemo, SCT, Velcade and now revlimid.

Don't think I'll get to Thursdays meeting due to the snow, so another day will have to be planned.

Cheers
Roz

[RozParticipant]

Thanks Lynn and Georgina

How things stand I'm not thinking positive, both Michael and I know its either long term hospitalisation or home with the highest antibiotics for life.

Not much of a life left, and when his kidneys dry out there will be no fluids at home, and no bloods.

So how do I go with an open mind???????

Roz

[RozParticipant]

Thanks All

Meeting is arranged for Thursday, Consultants rounds again. So may be some answers of his life will be discussed.

Not going till then due to weather and Michael falling asleep alot.

Tell you what I can
Roz

[RozParticipant]

Hi Bridget

Yes all those things have been checked, it's either another infection, the one in his arm getting worse, his medication, or even his brain.

Once the meeting has been arranged it's hospitalisation full time so I believe, or home for not very long. They believe his arm is worse than the other specialist does plus its not mended enough for any more ops.

Thanks
Roz

[RozParticipant]

Thank you one and All

I am glad he has found a way to offload. Yes I know your right. Its just cos we are apart, he tells me he doesn't see anyone, but all along he does.
It would have been nice to know.
Yes I tell you lot in a fashion, and also a mate via phone. But Michael has got jealous of this, but still he kept the vicars present away from me.
Deep inside I just hope and pray that he is not offloading because he has given up!! I just thought vicars came when you were dying.

He means the world to me and I'm lost.

Thanks again
Roz

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