Hi Kay, I've only just picked up your message, but wanted to reply to give you some encouragement. I was diagnosed with mm in August, also with plasma cell leukaemia, which is an added complication. For that reason I was treated with the PAD regime, which is a particularly aggressive treatment regime – I'm being treated at UCH in London. I can only say that I was expecting so much worse, and really had very few side effects, apart from being tired and learning to be a 'sofa slob', which my teenage children thought was great! 'You've become one of us' my 15 year old son said!
The other obvious side effect was losing my hair, but I went to a great wig shop before it went, and now prefer my wigs to my old hairstyle! My children found my hair loss harder than I did, but once it had gone, I made sure I put my wig on before I emerged each morning, and they like the new hairstyles too. My hair actually started growing back before I finished treatment, but as it's now an unfortunate shade of grey, I will keep the wigs for some time longer!
I finished my treatment at the end of October, and had a stem cell harvest a couple of weeks ago. I'm going into hospital for my stem cell transplant on Wednesday 5th Jan – I'm quite nervous about that bit of the treatment, but have read lots of advice on this site as to what to take with me to make things a little easier.
What I've learnt from talking to people is that each person responds differently to treatment and myeloma seems to be a very individual disease. I have tried my best throughout to take one day at a time, and to accept help when it's offered to me. I'm not very good at accepting help, but have learnt that my friends really do want to do something to make things better. They obviously can't make me well, but they can cook meals, give lifts to children, do a bit of cleaning or ironing, and they get a lot of pleasure from doing that if I let them!
The other thing I try to do is enjoy each day. Probably an obvious thing to say, but sometimes it's easy to forget that. Every now and then I do have black days when I think about the uncertainty of the future, but reminding myself that today, I'm alive and well, does help get me through those days.
My very best wishes to you Kay.
Sarah xxx
