Hi Rose

Please forgive me for appearing unresonsive to your mail of last Tuesday, but
in point of fact I immediateley referred it on to Ella Pybus, a wonderful
Meningioma patient who with a friend set up the Meningioma support organisation,
Meningioma UK. As she usually copies me in to correspondence of this sort, I
guess she is currently on holiday. But please be assured you will hear from
her.

Thanks for your good wishes for my last Wednesday visit to the Royal Marsden.
It was one of those days where ' if a thing can go wrong it will'. My daughter
could not accompany me as arranged because her little boy developed chicken pox
overnight, the London Train was late (Chiltern line is generally always, but
always, on time), I went wrong on the underground, and the supposed seven-minute
walk from South Kensington took 35 minutes by 'the country route'.

But the Hospital itself was wonderful, and apologised profusely for the fact
that my local hospital had only sent one scan out of four, and as a result they
could make no comparisons for rate of growth
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That said I felt at ease with them, in that one could ask any question one
wanted, and their replies were comprehensive. So at least I came away feeling
far more comfortable. And I also found out that a possible cause of my
headaches is the fact that the meningioma is sitting on top of the superior
saggital sinus (a major vein and not a sinus at all !!).

We are of course all different, and my last neurosurgeon talked at you rather
than with or to you, if you know what I mean. Some people are happy with this,
and do not really want any personal involvement with their health, but I have
never been one of those. After my stroke it took them two years to get my blood
pressure completely under control, and they still wouldn't have reached that
stage unless I had purchased a monitor myself, and thus at each appointment
could provide them with a comprehensive set of readings - a bit like contours on
a map, one reading being of almost no significance by itself - are we going
uphill or downhill? And to my relief I found that the various specialists
actually approved and welcomed this sort of patient involvement.

If, but only if, you are of similar temperament, then you would enjoy the
'Expert Patients Programme' designed to empower you to ask the right questions
and to take an active part in the management of your own disease. The EPP is
free under the NHS would you believe? And everyone with a long-term illness is
entitled to a place.

I feel I am starting to ramble now, so will close.

Oh, have just realised I have not answered your question on second opinion.
As far as I know anyone who is not 100% satisfied with the first opinion can ask
for a second, but in my case I waited for a full four years before making the
request, when it was granted without question as a right.

Don't please hesitate to be in touch at any time, and if I can help, I will.
I did have some very good websites which might have helped you understand things
a little more, but currently I am having computer problems, and cannot access my
'Favourites'.

With every best wish

CHRIS JENNINGS




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