[ruth75Participant]

Hi everyone, thanks for the replies. Since I posted this things got worse, last Monday his back gave out and he ended up sofa bound. He has been there ever since, with the exception of a couple of painful trips to the loo.

He refused to do anything about the pain, insisting he had pulled a muscle. Eventually his girlfriend made a GP appt for him, but when he tried to get to the car he couldn't and had to give up. He was meant to be back at hospital on Friday for further tests but couldn't make it, and had left it too late for them to arrange transport for him, so he is now going back tomorrow.

I have absolutely no control over the situation, being separated from him, and between them they seem determined to make things worse. Surely it can't have been good for him to be sat on a 2 seater sofa for a week, propped up with pillows?? He's 6ft5 for goodness sake.

Anyway, he's still in extreme pain. The gp prescribed some painkillers on thursday which his gf picked up for him, he says they helped slightly.

I'm fairly worried about him to be honest. I'm finding it difficult to deal with, being quite isolated from everything, I only know what he tells me and I don't ever know how selective he might be being with the information he passes on.

[ruth75Participant]

hi, he was given an x-ray as part of the initial investigation then he had a skeletal survey (?) last week when he was in the hospital but from what has been said this was done to provide some sort of benchmark (not sure if that is the right word) for future reference. Does this sound normal? They haven't indicated any bone damage from this as far as I know. He's not had an MRI or CT scan – there was talk of a CT scan right at the start, before he was given the diagnosis but they changed their minds and did the x-ray instead.

I've only got the information he has told me to go on, plus his discharge form that he was given for medical insurance purposes. I was with him for the initial diagnosis but since then he has just been passing information on to me, so I apologise if I sound a bit vague on some things.

I'm not even sure he wants my help, but I was worried.

[ruth75Participant]

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[ruth75Participant]

Thank you for your replies, it is helpful to hear from real experiences rather than statistics.

My husband has been put on a drugs trial, I don't know what for though, he couldn't remember all the names. I know one is thalidomide, not very helpful He had a third plasma exchange today, and another transfusion this evening, his proteins are very low now, and his blood count has risen – I don't know number at the moment (our youngest son split his chin open at nursery and ended up in a&e so only had a brief phone conversation whilst there).

He's been told he will have a stem cell harvest soon and may need a 3-4 week stay in hospital for this due to the impact on his immune system??? Can anyone explain what this process involves and what it does?

His consultant has also discussed bone marrow transplants with him for 'further down the line'. He has two 'full' brothers who he's been told both have a 1 in 4 chance of being a match. They've both agreed to be tested (I should bloody hope so too! lol)

I'm feeling more positive now, being back to work has helped me feel normal again and to focus on what is important. I only work part time so being back today was welcome (until my darling son fell and split his chin that is!)

Thanks again

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