Tuesday, July 30, 2013

Kicking at a closed door

Most of the time smiles make my face shine. I check my energometer as I wake and use what I have with care.  Optimism flickers in my heart as I try this changeover of epilepsy drugs. 

But even though I have three different drugs in my system instead of two, the seizure blighters keep breaking  the surface to show their fangs. I try to ignore their bite but nausea is hard to turn my back on. Tears sting my eyes in public as onlookers curiously watch.

Today I take the bus to Pilates and as I stand at the bus stop the nausea shows its teeth. I nibble a banana and it eventually subsides. But only for a while and in Pilates the tears cascade as I sit on the bright orange ball. 

Enough. I have had enough.

Too early for the bus back I take refuge from the torrential rain in the village information booth. When I leave I smile as a handsome young man holds the door open for me. 

But the distraction breaks my check trip hazard radar. I catch my left foot on the tiny ledge at the door and fall head first into his surprised arms. 

Head down I mutter my thanks saying I knew that would happen. Sorry my foot got caught. I walk away before I allow the tears of frustration to prick my eyes.

Back home there is only one choice. Snuggle into the settee accompanied by charity shop buys and treats...

"My therapist told me that the way to achieve true inner peace is to finish what I start. So far today, I have finished two bags of M&M's and a chocolate cake.. I feel better already" 
Dave Barry


Sunday, July 28, 2013

Kaleidoscope - a fairy garden

With a cheeky grin on Valentines Day, Mr H presented me with a gift...

I smiled and left it on top of the piano.

Then in need of some seeds for the allotment I opened the box. A small yellow plastic propagator, a round of compacted soil and a tiny packet of seeds fell out followed by flying fairy stickers.

I wet the compost and magically it grew and grew until it filled the propagator.  I sprinkled the seeds and watched them on the kitchen window ledge. They sprouted into hundreds of green shoots which packed the tray like visitors at the Chelsea flower show.

I carefully split the fragile seedlings into pots and promoted them to the greenhouse where they continued to shoot towards the sky until I was forced to transplant them into  'Lottie's' flower beds. There I sprinkled magic dust and waited....

Each time we water the allotment I skip (I wish) in a circle around the flowers singing to Mr H...

 "I grew these flowers from seed;  I grew these flowers from seed; heh ho the poppy  O; I grew these flowers from seed!"

Red and pink poppies sway in the breeze;  pink and blue cornflowers bob on their stems

Wild flowers which for me have no name, twinkle in the sun..... 

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Wednesday, July 24, 2013

Kate and William celebrate their first baby as I celebrate a first too...

I woke today with quivers in my tummy. I pack my rucksack and trundle to the bus stop.

I press the button and the ding tells the driver I want him to stop. I clamber slowly off and stick, hitch foot, stick, hitch foot my way to the crossing.

I grab the hand rail to enter my destination. The swimming pool. 

The flutters are now crashing waves.

I pay my fee and go into the changing rooms. Costume on I walk alone for the first time to the pool.

Hand my ticket to the lifeguard and ask him where Bill is. He points to the third lane. 

I drag my feet towards the lane.

He stops and looks up from the water in the big pool.

Are you Bill?  I'm Dawn... here for my first swimming lesson.

He smiles.

Monday, July 22, 2013

Keeping my foot on the pedal

Yesterday I used a toilet for the disabled and as I washed then dried my hands using the hand dryer I remembered the distress involved in doing the same in hospital....

...I balance the weight of my body on the sink edge while I stretch across to grab paper towels. With dry hands I look around me and spy the bin. It has a pedal. To lift the lid I need to raise my foot off the ground. 

1. I can't lift either foot high enough to squash a fly as I walk.
2. Neither of my feet have the power to squash the fly let alone press a foot pedal.
3. I consider lifting the lid with my hands but years of working in infection control set my hand contamination alarm bells ringing.
4. The lids here are hands free so lifting the lid is impossible.

I look around while still hanging on to the sink edge like an abseiler about to launch off the edge of a cliff. Horror claws as I realise I will have to leave the paper towels on the side of the sink. 

I would like to say I scurry off; but crutch, foot, crutch, foot, crutch, foot is all I can manage.

Back by the side of my bed it dawns on me that the policy to implement foot operated bins is all encompassing. The possibility that people cannot press the pedal is not in the plans on the assumption that the bins will only be used by mobile staff. 

Nowadays when I visit the hospital I know why the disabled toilet with a foot operated bin has paper towels all over the floor. I chat about this with a friend who uses a wheelchair full time. He too has encountered the same problem in hospitals and resorts to trying to press the pedal with his grabber, often to no avail...

Patient involvement in healthcare services development is vital but I now know that involvement of wheelchair/mobility aid users needs to reach the core of every decision.

Thursday, July 18, 2013

Journey on a bike from bottom to top

To cycle the 1000 miles from the bottom of the UK to the top, Lands End to John O'Groats; takes a fit person between ten and fourteen days, buckets of sweat and a dose of pain!

My cousin Tim Haslam, his wife Jane and friends, Lucy, Will, Andrew and Tony are planning this journey starting on August 31st.

Tim set himself this challenge as he reaches the half century milestone; the others are joining him for the ride!

The team have been training hard; even cycling in their sleep. Last weekend they were not, like me, in the garden snoozing in the 30 degrees sunshine. They were sizzling on the roads turning wheels for a mere 75 miles.

Their challenge starts in Cornwall at Lands end, then they pass through Exeter, Weston Supermare, Hereford, Ludlow, Chester, Slaidburn, Penrith, Crawford, Dunoon, Inverary, GlenCoe, Inverness, Altnaharrah and finally arrive at John O’Groats.

Tim will carry a photo of my dear friend Jon whose ambition to travel to the farthest point in the north and south was thwarted by his brain tumour. He will make it at last. I will be cheering them on in spirit.

The Team are raising money for two charities so If you would like to Donate to encourage these brave people;  please click the Donate link here. 

Their chosen charities are The Brain Tumour Charity and the Get ahead Charitable Trust. 

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Tuesday, July 16, 2013

Joyous July close to the sky

I was lured by the lake district year after year walking hills, mountains and fells with the Ramblers. In 2008 Mr H and I visited with some of his family, we stayed in a cottage surrounded by green pastures and wavy hills dotted with cattle grazing under a canopy of blue sky.

I persuaded them to walk to Tarn Hows just outside Coniston. They mumbled and moaned and only a bribe of fruit pastilles got them trailing behind me. 

But at the top they gasped at the beauty in front of us.

But when it came to climbing Old Man Coniston I met a resounding NO. NEVER!

So I was left to gaze up from below and be satisfied with Mr H's promise to come back and climb sometime soon.

But that November, my life came crashing down.

"You may delay, but time will not"
Benjamin Franklin

"Why not seize the pleasure at once, how often is happiness destroyed by preparation, foolish preparations"
Jane Austin

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Sunday, July 14, 2013

Just the passage of time

As my half century gallops towards me, my celebrations of a decade before play like a cine-film in my mind... 

...Mr H says what do you want to for your big day?

Climb a mountain is my reply

Are you serious

Absolutely. I want to climb the 2930 feet (893 metres) of Cadair Idris

We plan our trip and with spirits already on the mountain peak, travel to Wales the day before my birthday ready for an early start. On the pony trail a mountain of steps face us which we clamber without a thought as we find our climbing rhythm. The gravel path crunches under our feet then changes to uneven grass, we ooohh and ahhh as the wave of hills appear before us; behind which the peak of Cadyr Idris still hides.

We eat a picnic overlooking Llyn Cau, the inviting lake cries out to be swam in, not today though.

But on the shale covered mountainside unexpected fear roots me to the spot as dizziness does a dance in my head.  I sit as Mr H feeds me chocolate and water. Hand in hand he pulls me up until we leave the shale side behind.

Hands on hips breathing hard we reach the summit. Mr H pulls cards, cake and champagne out of his rucksack as he sings Happy Birthday. I make a pact to climb another mountain on my 50th birthday.

But now I am nearly there, as I celebrate life, part of me will yearn to be once again Queen of the Mountain.

Cadair Idris 2003
At the Mountain Peak opening cards in the mist

Tuesday, July 9, 2013

Juggling seizures

I woke under water this morning but my swim is this afternoon.

I empty coffee into a mug and hope I will surface.

The last few days my Simple Focal/Partial Seizures have been bouncing around like a clown. 

The nausea teases then 'strangeness' in my head follows before momentary sadness and painted on tears complete the show.

The pill swap takes eight weeks at best.  I have three epilepsy drugs up in the air, adding one in like an extra ball while the old one is gradually dropped. 

Last night I threw in more of the new to whip the seizures into oblivion.

Today I flit from one uncompleted task to another.

This time at least I have enough energy to enjoy sunshine and flowers in our garden; I hope you do too....

Sunday, July 7, 2013

I just can't make scones

Like a panda Mr H has his head amongst the bamboo as leaf covered stems swish through the air hitting the ground at my feet. 

Sitting on our blue bench I strip leaves from the canes; soon to be the climbing frame for my peas as they sprout juicy green pods at the allotment.

The sun sizzles on my left foot and shoulder so I slip inside for respite as clotted cream cries from the fridge:

I need scones...

Like slipping on a comfortable pair of shoes I pull my Nans Bero book off the shelf. A food processor short cut means ten minutes later the smell of baking wafts into the garden and Mr H pops his head around the back door with a grin.

My scones from this book are always so light they float above the plate.

But disappointment oozes from my pores as I lift the trays out of the oven . My scones should have risen as tall as Mount Everest, instead they are as flat as the Norfolk Broads.

I blame my scone failure on poor old BT; but it could be the out of date flour...

An extra dollop of clotted cream, a thick sandwich of home made blackcurrant jam and blissfully unaware Mr H sinks his teeth in.

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...

Wednesday, July 3, 2013

Important Friends...

The ozone smell wafts towards us as we lean on the railing above the murky sea. The wondrous yet familiar Seaside Pier reaches out into the water. Full of lunch we pull our coats around us as we wander along sharing tales. Reflecting

We stop to gaze at flowers anchored to a bench with blue ribbon,  inscriptions tell of two families linked by loss. a gift for others to rest and enjoy the view.

Fingers blue with cold we direct our feet towards the car.

People see two giggling ladies out for a seaside stroll.

Special; exceptional, out of the ordinary friends.