[tomParticipant]

Hi Sue and Michael

I am Pleased you are Home Michael as am sure its best place for rest and comfort, sorry you had a panic attack michael it must have been scarey ?

Sue I have three Handsome Sons but all soreted now but am sure that Pretty Daughter of yours will be sorted when she is ready, aint no rush these days is there?

You both kep well and stay strong.

Love Tom xx

[mhnevillParticipant]

Hi Sue

So glad to hear Michael is now home. I lit a candle for Michael, at church this morning, and prayed for a miracle that you could all have some lovely days together.

Love to you all.

Mavis xxxx

[TinaParticipant]

Hi Sue,
I have only just come onto the forum after a break and read your sad news. You were always so supportive of me when Patrick was fighting his battle and I wish I could find words to help you through this dreadfully terrible time.
As many have said, talk, talk, talk I am so very glad that Patrick and I had that opportunity even though at the very end I was robbed of a chance to say goodbye. Spend as much time together as you can, I am sure Michael is comforted when you are close by. I stayed at the hospital with Patrick everytime he went in as he feared dying alone and in any case I could not bear to be apart from him for a moment.
Sue if there is anything I can do for you please let me know. Your daughter looks lovely and I am sure she is a great support to you. All my very best wishes to you and to your loving husband Michael.
Tina XX

[susannahParticipant]

Hi Tina its lovely to hear from you,how are you?

I keep thinking im ok and then I burst into tears, my brother sat with Michael today while I went to the dentist, and then to the shops, just wandered round like a lost sole. Ive always been such a strong person were michael is concerned but I can feel myself loosing control.
I have a question that keeps going round and round in my head that i need to ask, 2 weeks ago his blood results were all good then out of the blue last Wednesday his consultant told us 3mths his PPs had only gone up by 5 so what was she looking at that made her so sure of his prognosis, am I wrong to ask this question the next time I see his consultant? or am I gripping at straws expecting a different result

love to you all

Suex

[eveParticipant]

Hi Sue
May be the answers lie in what you did not hear!!!!!

When Slim was being taken to ITU a doctor in front of me said to him,you are being taken to ITU "I cannot promise you,you won,t die",he did nor ask and he cannot remember:-P.

Sue you need to speak to someone may be a consultant or your own doctor,you need to ask for a second opinion.No one can give you a time,because unless he is near death ,organs failing no one knows.I am sure if you wanted to speak to a consultant,they will either see you or speak over the phone to you,
Please get in touch with someone,they understand that,some things are hard to accept,I have been told they have to repeat 3 times,the bad news.so that it is understood,and to give a time is un heard of.Eve

[TinaParticipant]

Hi Sue,

I am still very up and down, trying to keep as busy as possible thankyou for asking.

I would most definately ask the question regarding Michael's prognosis. PP levels are only just one indicator of this complicated disease. As the it progresses some signs can go un noticed by us carers. For example Patrick developed clots on the lungs and kidney failure which all came to a head very very quickly quickly. Your consultant will have seen some of these other signs worsen and chose not to, for whatever reason, share the details. If you need to know, which I suspect you do as I would, please do not hesitate to get on the phone and ask.
Tina XX

[tomParticipant]

Hi Sue and Michael

Am sure that at anytime in anyones illness you are never wrong in asking Q's it may seem silly to you but if you are thinking it then its imprtant to you, so i would say ask away and get answers it might not alter the outcome ?? but trying and knowing is better so ask away
Thinking of you both

Love Tom xxx

[mhnevillParticipant]

Hi Sue

Just posting to ask how things are with Michael. I do hope and pray that as you approach Christmas there is something to look forward to.

Much love.

Mavis x

[susannahParticipant]

Hi Thank you all for your kind replys. Michael has been getting alot more pain recently, but he has coped really well. The worse thing is the panic attacks he cant let me out of his sight. He cannot walk very far but ive managed to take him out in the car, at first id take him to a coffee shop but his appetite has almost gone although he has a craving for dark chocolate bounty bars. I keep having wobbles myself, usually when hes in bed and im sat alone, I can cry as much as I want then without having to appologise to anyone
I just wish his consultant hadnt put a time limit on him, we both new time was running out and there was no more treatment. And this last trial, well it was just that a very new trial but hopefully will help you all on this sight some day
Love
Sue

[tomParticipant]

Hi Sue and Michael

Am sorry Michael is having a lot of Pain am sure they must have stuff to stop or lessen it all?.

I know its Michael that is ill with the MM but you need to look after yourself also and the tears are ok you have no reason to feel that you have to apologise for it.
Can you get some help in to help even if its an ear to chat with when Michael is sleeping.

Love and hugs to you both

Tom xxxx

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