[LittleFoxParticipant]

Thanks for the warm welcome David. Everybody seems so nice on here.

It must have been terrifying for you to break your neck getting out of bed, I just can't imagine. So good to hear that you are now fit and well though in the space of three years. I can imagine it has been a long three years, but you seem to have got there, which gives me hope that my partner will come through this horrible dark tunnel at some point.

However awful it is for me, I know it is so much worse for him – and for all of you battling with this awful disease.

It seems like the neuropathy remains a problem for quite some time after the treatment, is that really the case? It is driving my partner to distraction at the moment – I wish I could take the pain away for him.

Tracy

[LittleFoxParticipant]

Thank you all for your kind words and the lovely messages.
I feel for you Eve, hearing that your husband goes in for his stem cell transplant today. It is such a hard thing to go through – for patient and loved ones, but what kept me going was constantly telling myself to be grateful that as horrible as the procedure is, at least it exists… someone somewhere thought it up, created the machines to extract the cells and worked out how to put them all back in again, which is truly amazing. And we are so lucky to live in a country where this treatment not only exists, but is free of charge on the NHS. I don't know if that helps you, but I have literally clung to those thoughts over the last few weeks.
It was so hard to see him suffering so much and know there was absolutely nothing I could do apart from be there and resolutely not lose faith that he would be ok.
Thankfully, my partner came home again last night. They put a lot of fluid into him and his creatin levels (or creatitin or something like that? although I am sure that's what we used to paint fences with…???) are now reasonable so he's ok to come home on the condition that he keeps his intake of water up – 3 litres a day minimum. It scared the life out of me when he went back in on Friday, he looked so poorly, but he was so much better yesterday when he came home and even managed to walk from the ward all the way back to the car in the car park 🙂
He's at the day clinic again tomorrow so they are keeping a close eye on him, but he already looks a million times better than he did when they originally discharged him last week.

He is suffering mostly with his feet at the moment – peripheral neuropathy. I read some other posts on here about the same problem (he says he feels like the soles of his feet are literally on fire) and noticed someone suggested thick bedsocks. He tried them last night, but sadly it didn't seem to help.
I noticed someone also suggested co-enzyme Q10 – does anyone know if that works?

Thanks again for all the lovely messages x 😀 x Tracy x

[LittleFoxParticipant]

ah thank you so much, that has really brightened my day.
My partner too had smouldering myeloma, but it became symptomatic about a year ago. He's gone through Hell with the CTD (quite a few complications) then 4 cycles of Velcade before having the stem cell transplant just under 4 weeks ago. He came out of Christies this week, but hadn't even been out 48 hours before being taken back in again as he is not absorbing fluids properly after the melphelan (however you spell it). I woke up feeling very teary and a bit overwhelmed with it all this morning.

[LittleFoxParticipant]

hi thanks so much for your message, I felt a bit embarrassed and deleted my post. I posted it this morning when I was feeling really overwhelmed and quite down, but when I logged back on this evening and no one had replied, I took it off – didn't want it to look like I was moaning.

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