[pin45Participant]

Dear Paul, thank you so much for your warm response. It’s is so sad because there are days where she is just so low and stuck and I simply don’t know how to help her as I don’t live nearby. One thing she loves is to walk, she would walk every day on the local common during remission. It was such a shock to her to relapse and the plaque was close to pressing on spinal nerves and causing paralysis. I think to lose her independence has hit her very hard.

Your experience outlined here will help her and I thank you for sharing. I worry about her constantly, I don’t sleep for worry. It’s going to be a long slog but hopefully with support from me and her friends she will get there. I think the steroids also cause her a great deal of distress too so she is going to ask about reducing those slightly in case that might help.

Thank you again.

[pin45Participant]

Thank you Paula, so much. This is really helpful. I am the kind of person that asks many questions and will read and want to know everything whereas they are both very much of the opinion that the doctors will treat her and they must trust in the treatment plan. The first two weeks of VTD she was so poorly (she is 72) it was a shock to see her especially as she only weighs 36kg. The last two weeks she has been off the Velcade and just on Thalidomide and sounds much better when I speak to her twice a day. She starts her second round of Velcade next week. I am going to stay with her for a few days soon so shall get hold of a dairy as you have suggested. Thank you again for responding.

[Author]

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