[EJBonesParticipant]

Kim,

I have just transferred to St Bart’s to Prof Cavenagh’s team from University College Hospital. I will be going back to the latter eventually, but Bart’s are leading on my donor SCT. I have had three appointments thus far and I find his team very helpful and hands on, although prepare yourself for long delays in clinic. There really isn’t much more to say than that. I trust what they are telling me and what they are doing and it is all presented to me in an understanding and human way. I think that is all you can ask for.

As for pain management, mine was managed by myeloma doctors. It took some trial and error with my meds, but it is under control now. I was referred and started physiotherapy at the Royal Hoosital of Integrated Medicine last year to build up my strength (I have multiple lesions in my spine and had a fracture to my L4), and that did help, but I had to stop when a tumour decided to appear. The royal is part of the UCLH trust, so I am not sure if you will be able to use their services, but I imagine that Bart’s can refer you to something similar.

Thanks,
Emma

[EJBonesParticipant]

Thanks Peter. Macmillan were my first port of call, and they have given standard advice about my rights under the DDA and I am obviously going through the usual channels via my work. The support centre in my hospital is very good, but it was specifically myeloma work related issues I was interested in. I believe, given my age, that it should be treated as a chronic illness, it may lead to reduced working hours, but it does not necessarily mean that work is an impossible feat. I just wondered how others who have been diagnosed pre-pensionable age have managed employment. A family friend also has myeloma, but he is self employed, and I know until recently, he continued to work full time after two autos and various treatments. For people with an employer, I guess it is slightly more difficult to be as flexible with hours for example, but I am interested in knowing how (or if) people have managed it.

Thanks,
Emma

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