[CH] Just to keep you informed

Joan McCutcheon (joan@mccutcheon.com)
Thu, 10 Mar 2005 09:06:03 +0100 

Dear all,

Thanks for all your good wishes, flowers and cards, phone calls.

Here is the news:

I will be on medication for epilepsy for life.  When my quality of life is
so that it is not good they may biopsy/operate/radiotherapy/chemo.

I have two tumours which are benign and slow growing:
My walking/balance may be affected as will my ability to say certain words,
recognize certain items.  These things have already started happening.  My
right eye peripheral vision seems now to be affected and may get worse.  All
these things I have to watch out for but they may only happen over a lengthy
period of time as both tumours are benign and slow growing. They have been
there a very long time. They call it a watch and wait policy.

In 4 months I go for another MRI scan to determine if the tumours have grown
any.  Also I will be tested on my possible worsening symptoms.  If there is
no tumour growth and no more worsened symptoms then the next mri scan will
possibly be 6 months later, the next one being 1 year etc.

Way to go:
I have found out about non-invasive radio surgery called stereotactic
surgery or gamma knife surgery.  I can definitely have this for one tumour
(Melanie) but not sure about the other as this one is quite diffuse.  This
type of surgery is done in USA, Germany or the UK. I am in the process of
finding out whether my medical insurance would cover that. Also the benefits
need to be weighed against the risks.  Also they do not know which tumour is
causing the epilepsy.

For people who want to do research on the tumours - here are their types and
details:
Type: Meningioma
Classification: Grade I
Site: occipital lobe
Joannie Name: Melanie

Type: Glioma Astrocytoma
Classification: Poss Grade I
Site: Right temporal lobe
Joannie Name: Astrid or Starry

My age is a factor also in this.  They have sent me home and are actively
doing nothing.  If I was 30 they would have a different approach.  I have to
best get on with life.  I can go back to work and I can still fly (not me
personally :-).  Driving is out of the question for 6 months from the last
seizure (July 14 is blast off day) unless I have another seizure.  The
medication for the epilepsy make me drowsy at the moment so work is out of
the question just now until my body gets used to the medication.

I do however have a date in mind that I will aim for starting work -
possible middle April.

Just to keep you all informed.  If people want to give me a call/visit/email
please do - its always a pleasure hearing/seeingreading from you.

Kind Regards,

Joannie