Saturday, October 26, 2013

Musings of my epilepsy drugged brain

The changeover of epilepsy drugs to try and regain control of seizures is a sluggishly slow process; adding a new one into the pot before the old one is slowly withdrawn. At the start it is hard to see through the cloud of dumbed down brain activity. Writing a line for my blog was as tricky as getting my legs to run.  I have tried to capture that feeling in words...

Letters swirl in a kaleidoscope of colour,
Transform in their chrysalis cocoon
cups become cakes, cauliflowers are mushrooms

Clusters of words play hide and seek,
On the run from the trap of my pen
they meet just out of reach
Ideas turn to darkness as they slip into mist,
Print swirls in the midst of pale pages
as thoughts tussle without wings to fly

Like flittering butterflies sentences escape,
Paragraphs part to let them through
to soar in language laden skies

I lie in wait for a painted Lady to settle but
the pink and white mind blurring thieves make
my head close its eyes before she lands

Dawn October 2013

Picture I took in Hidcote Gardens

Monday, October 21, 2013

Meningioma. Day one - diagnosis

As my fifth anniversary dawns I pause to reflect on the day the words Brain Tumour stormed into my life.

On November 17th I sat in my grey clio in Newport Wales after a community infection control strategy meeting. As I whizzed along the M4 I belted out songs with Eva Cassidy;
 I see trees of green…red roses too…
I see em bloom for me and for you….
and I think to myself…what a wonderful world…

I breezed past Mr H as he walked through the door; bye off for a run hung in the air... we normally ran together.

In bed Mr H asked me silly questions to settle my agitated mind; if you could only travel to one place in the world which one of these would  you choose; A) Africa B) America C) Italy…
but I want to go to South America, No you have to choose from these three oh mmmmm already travelled across America when I got my scholarship, seen a bit of Italy, it would have to be Africa….zzzzzzz

I cried out as a painful spasm in my lower legs woke me. My arms flapped as my head had an earthquake. My brain shook as it bounced off the sides of my skull.  I thanked God as a dark empty cloud embraced me. Silence.

Mr H’s face came into view. He was shouting wake up wake up. It was quarter past one in the morning. November 18th. On the way to hospital the cloud tried again and again to spread its darkness. I lay on a trolley as needles were poked in my arms, I trundled into a CT scanner for the first time; then a second…for more pictures….
We have seen something on your brain scans, the lady doctor told us. Mr H and I shared a shrug and raised eyebrows; best not to speak.

On the ward the neurosurgery registrar handed me a scan picture with a round thing sitting in the right side of my brain. 
He said This will have caused your seizure, it could be a primary or a secondary tumour. At the word secondary I clasped my hand to my breast thinking oh no I've got breast cancer...
He continued...In all probability it is a primary tumour but we won’t know for sure until we have removed it.
I asked him for the cold facts so he looked me in the eye and said If it is malignant you will have about 18 months to live, if benign you will live, but it will be a different life….We would like to operate today if we can, if not definitely tomorrow.

Mr H and I crumbled in each others arms behind the curtains. He drew the short straw as he went off to break the news to others...

The Neurosurgery Consultant I saw later told me that in his clinical opinion the tumour was likely to be a meningioma, a slow growing tumour of the lining covering the brain which is usually benign.

Never heard of it I said. How much hair will I loose?

Grand Canyon on my travels in 1993

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Wednesday, October 16, 2013

Mr H; the best is yet to come

Mr H tells me everyone should have a husband like him, but not being one to lavish praise when it is openly being sought I reply, I'll put you on the market to the highest bidder then! He laughs as I deliver my new teeth whitened grin.  

Laughter is the sunshine at home, tease is a cat and mouse game we play; any hints for praise are smashed back like a ball on a bat until we run out of breath.  Its the small things that matter; when Mr H walks through the door on a cold winters evening I try to ensure there is steam on the windows! The pans are on the cooker, or on low energy days, the microwave is buzzing. When I worked long days in Wales often driving back in the dark; the sight of Mr H's steam, made me skip through the door.

Mr H and I are attached by many strings; an hour or two with binoculars dangling from our necks keeps us sane, we cannot pass a book shop and have to restrict our visits to heavenly Hay on Wye since our house already trembles underneath the weight of our books. Dancing lessons have been replaced by evenings snuggled up with a film from our DVD library. We garden and grow together and if my battery is flat I orchestrate and entertain from my deck chair.

He is a man that does, on cruises he plods off to wash and iron in the laundry and I laugh when he pulls stories out of his newly ironed shirt pockets; an argument about washing removed too soon, ladies moaning that their husband would never iron a shirt; more fool you ladies I say. Sometimes I go to stand and watch, I may even lift the iron! He carries my bags, silently proffers his arm when we reach steps, holds the door open for me to get in the car or walk through a door.

Yet we are both as stubborn as weeds pushing up through the soil, our minds clash like swords in a duel, weeks are littered with arguments but sulking is rare. Mr H has learnt to apologise even if I am wrong!  Praise comes often, Mr H is better than me. He was the first man to tell me I am beautiful, I still don't believe him. I tell him I have enriched his life!

I was able to offer a mind of support when Mr H studied for his Masters Degree, bouncing ideas around coffee shop walls, proof reading chapters. He trusts my opinion. I even got a mention in his final dissertation:
Finally I need to recognise the unique support and encouragement that has come from my special wife Dawn.  Her gentle and singular example of determination and struggle against profound challenges has made me recognise the importance of never letting go of your hopes and plans. I am indeed blessed to have someone who never stops giving so much of herself to others despite the huge losses and sacrifices she has had to endure.

Getting to know someone, soul-side and warts can be a slow business and our walk of discovery continues. Indefinitely I hope. One friend talking to another says there is someone out there for everyone. I believe that too.  I am lucky I have found my someone.

Friday, October 11, 2013

Meditation with a pen in my hand

I wag a spare finger at myself while lying with my feet up on the settee, multi tasking with one eye on the TV and two fingers and my second eye on the iPad

Write a blog post, write a blog post...

...then out of the blue (mmm ipad) the title swung in and hit me right between the eyes as I re-tweeted a brilliant article I came across from the Huffington Post on how to use writing as a meditation practice.  Take a look and give it a try:

Writing for Meditation

The author Jane Brunette describes the use of mindfulness by starting with 21 calm deep breaths as preparation for writing whatever comes into your head for the next ten minutes using the prompt 

Right Now...

Jane then advises the writer to stop and read it back out loud without criticism or question...

then go over it again and underline sentences or bits that strike or intrigue you in some way...suggesting the writer can use those areas to prompt further writing next time...

read the article in full to get the benefits Jane describes...

Writing for Meditation

This made me reflect on why I write, well scribble really. In the beginning It met an instinctive need to get the trauma of my tumour and not being able to walk, epilepsy (yeah yeah yawn, we know) onto paper and out of my head. It worked. I felt my head instantly lighten whenever my pen scratched paper...

I shall try this ten minute technique who knows what will spring out from my spongy brain and slippers...more blogs at least!

Thursday, October 3, 2013

Memory Lane, Ten Thousand Books, a Taxi and Four Bananas

On the Number 63 Mum entertains me with a chirpy trip down Memory Lane, the snippets slip into the ears of the people behind us too.

...the craft shop used to be on the left but now it's on the right...I used to go to Sainsburys here and catch the bus straight back with my bags...your Dad's Cousin's Wife's family used to own the Pins and Needles shop, look on the right, oh it's closed down now...

Oh look I add when I find a chatter gap, the Gunmakers Arms is boarded up, that's where I tasted my first glass of cider and black; but my comments disappear in the back of the bus, Mum has forgotten to put her hearing aid in!

We meander along the pavements I trod on my way to and from nightclubs...

The Council House

I click my camera as once familiar sights now stop me in my tracks.

Town Hall

Meet the Floosie in the Jacuzzi!

Then the Mecanoo Library shouts it's welcome...

Inside we fly from floor to floor on sky blue escalators, each one sharing it's 1000 books.

Secret gardens lead us to the Memorial Library where grey haired books fill glass covered shelves while Shakespeare looks on bemused.

The Memorial Room has been relocated from the original Library

The  ceiling carvings mingle with the light

Mum gazes in as Shakespeare looks out

Ten floors of a thousand books make our excited legs falter so we treat ourselves to lunch amidst the Symphony Hall musicians next door.

Mums blue eyed gaze drills into mine as she says:

Let's get a Taxi home, you look tired and I am pretty worn out too; but when we get back I must buy more bananas (Mum always buys a couple of bananas for me as I nibble on one to ease the nausea when a seizure creeps in)...

I grin and suggest we go wild and buy four....