[JollyParticipant]

Rebecca thanks for your response it is so comforting to know I am not alone. I know exactly what you mean and you have managed to capture so much of what goes through my own mind. I have been trying to muddle through and keep how I have been feeling to myself because I feel my family have been through so much with me that I dont want to worry them and to be honest beat myself up about not doing a merry jig every day !! I only ever get my paraprotein level at the hospital so am not sure what light chains are? If yours are trending upwards what does that indicate?
I have contacted the myeloma support group and am going to go along to their next meeting and have had support from Maggies too. I just was not prepared for this low and anxious state because like you I dealt with everything head on and was so positive. However you have helped me because I realise I am not alone and like you say perhaps others who have been here and worked through can give us some good ideas?

thanks
Pauline

[JollyParticipant]

Hi lynn i am at western too!! Who is yr consultant?

[JollyParticipant]

hi Lynn, your bus seems to be on a similar route to mine…. I was diagnosed in May, completely out of the blue and was called at work by my GP, like everyone else the shock was immense but like the saying goes you get the strength from somewhere dont you. I am 46 with 2 daughters 19 and 14 and my partner and I have decided to get married next July and a celebration is on the cards!! are we mad ??
I have been selected like you for the myeloma 11 trial and was randomised for the trial … the biggest test for me has been steroids ! They are now being tapered but are still the worst part for me however needs must,I totally empathise with red faces flushes and nite sweats !!
I was also allergic to the allupurinol after cycle 2 and taken off it , I am nerly finished cycle 5 my paraprotein has gone from 51 to 20 and seems to have now plateued and am now moving to transplant which will start 21 Oct …. reality has set in for me now and I am scared but know I have to do this and there is so much support and help on this site from lots of lovely people, thank you x

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