Another rather long chat with Dr. Nicholls today.  Tom got utterly fed up, but has grown a little since last visit which is good.  His spleen is down to 1cm which is really good news, and his heart sounds as good as we would expect it to.  The visit was really more about touchin base with all that's been going on.  I let her know about the talk with the pain doctors, who essentially say the same thing as her:  physiotherapy, starting with hydrotherapy is the mainstay of pain management, because you need to make sure that the core muscles are worked well enough to support all the others.  She also thinks that Riding for the disabled could help him a lot!
As for medication she is quite happy to let the doctors at GOS manage that as they are the experts.
With regard to the hydrotherapy, it seems that there is a QUANGO at the trust, made up of managers (no clinician - God forbid) who say no to spending.  It may be that Tom's request has landed there, which would not be good, so she's going to investigate.
All in all I think it was a worthwhile visit, although I came away feeling I keep having the same conversation!!
Oh - one good thing.. We talked about his stoma, which is really not great.  She talked about a preparation of Betadene and hydrocortisone which sounded promising, as Betadene is the only thing that has any effect on it, but is not long lasting.

What was the HOME page was always meant to be this - a blog!  So now I've found a way to do it - yeah!!  Entries about daily happenings  will happen here.  I will probably put musings in the same way to allow for comments.