Friday, July 5, 2013

Information - why am I not a size 8

As I was pushed out of the ward in a wheelchair My only interest was how long it would take for me to feel the bumps of rock beneath my feet as I climbed 'Old Man Coniston' in the Lake District in Cumbria.

At home my daily struggle to climb the stairs continued and I began to wonder about the tumour. 

Google trembled at my search onslaught; meningioma, brain tumour, recurrence rate, complications, paralysis, epilepsy, why is my leg not working, why am I no longer a size 8 (who am I kidding...last time I was an 8 I was 16 yrs old...), still worth asking... 

I searched for answers and information...any information, on any site. I came across sites offering obscure advice:

Yeah! I have had that and the Dr said don't worry about it just take a spoonful of the medicine of life...
Boil dead snails (make sure they are dead when you find them) with leaves from your garden and dirty bath water, once the mixture reaches boiling point simmer for an hour before you add a pinch of good luck and a table spoon of hope. Let the soup cool and there you have the recipe for life....
(Hazard warning - this is a joke!!).

So I stuck to reputable sites such as Associations and Charities which I have since listed on my Useful Links page above.

I wish that all hospitals dealing with Brain Tumours and their fall out such as Epilepsy provided 
a) information and advice in written format and 
b) knowledgeable contacts after discharge - particularly for those with a non malignant tumour

A leaflet about my tumour and the common effects I could expect; e.g. fatigue and tips regarding pacing; low mood and depression would have been brilliant.

I nearly papered the walls with the stuff I printed out until Mr H and my sister reminded me that even though I had a BT some of my other symptoms could be due to normal things, so my keyboard tapping slowed.  My BT searches were replaced by holidays, birdwatching sites, live music and theatre shows and even routes up Old Man Coniston again.. I keep hope alive...

Although like a burglar in the night; every now and again I sneak a few search terms in as I look over my shoulder to check I am not being watched...