Sunday, June 30, 2013

Idle at the Allotment - I am a Spoonie

I drag the deck chair out of the shed when we arrive at the allotment and sigh with relief as my green chair snaps open. I drop down into the seat as I ease my camera out of my blue shorts.

I watch Mr H wander off to fill the watering cans from the water trough; the water splashes as he expectantly plonks the full cans down beside me:

With a cough I remind him I am not doing anything; my energy cans are empty.

Well... I will pick the ripe strawberries peeking from under their net and snap at the growing vegetables.

Back  home I research 'empty watering cans' and come across the Spoon Theory by Christine Miserandino. I too am a Spoonie and today I have run out of spoons.

Christines' theory is a simple analogy describing spoons as a unit of energy. She suggests that most people, particularly the young, start the day with an unlimited amount of spoons hence  the energy to do what they desire! People with a chronic illness have to plan each day on the basis of how many spoons they wake with; each activity in the day will cost a spoon; showering, dressing, breakfast and so on. Activities have to be tailored accordingly.

At the moment I am changing my epilepsy drugs so my spoon allocation each day is low. Today I woke with ten spoons and have used nine before we went to the allotment; hence my 'idleness' and joy at the sight of my deckchair...

By the way Mr H and I are starting a UK Allotment Holders version of 'Attraction' This years Britain's Got Talent Winners!!

Wednesday, June 26, 2013

In a Good Place

The sky is as blue as the mineral filled Norwegian fjords we have visited. The warm breeze swishes through the golden bamboo in the garden as washing swings on the line. I whistle unrecognisable tunes as I peg out the contents of another basket.

A chilli bubbles in the slow cooker, the ironing can wait another day.  At last I am learning to pace myself so that days full of tears are less frequent.

I recall the early days when searches for the old Dawn were in vain. The old Dawn had left without warning. She had sailed away to unknown shores. The clouds were dark as I wept for her, missed her and yearned for her return.

Antidepressants softened the loss and eventually lifted the clouds to allow the sun to peek through.

Almost three years have passed since I started the tablets. Our visit to the fjords made me think of the old Dawn; she would have climbed the mountains instead of looking up from below; she would have walked up the glacier instead of spying it from a boat; she would have danced the night away instead of wiggling her hips as she passed the disco on the ship, on her way to bed for an early night.

But my smiles never faltered. My squeals of delight resonated on the boat trips; early nights meant I stood on the balcony and watched the matrix of clouds hover over the lowering sun, which never set. I snapped away to capture the magical reflections on the fjords’ silent waters. Best of all Mr H was always by my side.

This year I had considered getting off the antidepressants but my GP and Neurologist persuaded me not to try until we sort out my epilepsy. Good Plan. Why change when I am at last in such a good place.

Monday, June 24, 2013

Insurance For My Holiday; How Hard Can it Be?

Like booking an appointment with the dentist I make the dreaded call

Hello blah blah insurance how can we help you?

I would like to get a quote for travel insurance to cover pre existing medical conditions.

I describe the holiday location and dates of my adventure but when we arrive at the medical questionnaire my heart tries to escape my chest

With a smug grin I answer no to the usual questions; diabetes, heart problems. But we stop at epilepsy:

How many seizures have you lost conciousness in the last 12 months - aha with a light heart I say none (the only time I lost conciousness was during my first in 2008)

How many seizure drugs do you take? 

Two; my heart sinks (I have no idea how many is too many)

Do you know the cause of your epilepsy; yes, I had a brain tumour (heart drops a few feet as it tries to escape through my navel, I wonder if that is the insurance breaking point)

Was your brain tumour malignant? ...No 

Was it all removed? ...No (faced with this quagmire of questions my heart which is now below my stomach flutters madly)

Are you having any treatment at present? ...Well annual scans

Bust size? (got you!)

Anything else

Voice reduced to a whisper I add: well I have a semi paralysed leg and walk with a stick... (oh stop asking and say you will cover me..pleeeease)

Thats fine we can cover those. Anything else?

My thudding heart sinks below the muds' surface; well... I am on antidepressants... do you need to know that?

Yes definitely. 

Unfortunately we don't cover depression. My voice wobbles as I tell the lady I am happy not to have my depression covered.

We are not be able to cover you for anything if you are on antidepressants

WHAT!! My angry fingers attempt to scribble down the numbers of other companies who may be able to help.

I slam the phone down. Head in hands I moan out loud. I can't go through this again...

I do of course..eventually...and as I carefully place the phone back into its holder I whoop. 

Thank you Freedom Insure

Friday, June 21, 2013

Its the life in my years...

One of the first questions I am asked in a new social setting is what do you do? 

Initially following my brain tumour I avoided eye contact as I answered this dreaded question:

      I used to be a nurse, still am really...; but I had to take ill health retirement; ...the brain  tumour...fatigue....poor walking.... sort of thing.... voice became softer and quieter; still no eye contact.

Now four years on, with my smiling eyes fixed on the interrogator I say: 

I am busy living...


In the end, it's not the years in your life that count.
Its the life in your years
Abraham Lincoln..

Saturday, June 15, 2013

Intuitive, Non-Judgemental Lifeguards

I sort my rucksack before my weekly swim as I recall the tremor of fear when I stuffed my costume, towel and toiletries in for the first time. A whirl of unanswered questions occupied my mind...

How would I get into the pool?

Once I was in, would I be able to let go of the side?

Would I be able to swim?

One thing I knew for sure, people would stare as I dragged my left leg and gripped Swimming Sues arm for support.  As a mind reader I can hear their thoughts: I wonder what has happened to her, stroke maybe? Not sure I could come if I walked like that. 

I have learnt through counselling that I am making up stories which may or may not be true.

Now I make up positive stories to tell myself as I head to the pool... wow isn't she amazing!!; brave to be learning to swim again; I hope I could be that brave if anything happens to me.

This week I am tired and as the baby pool glistens like a mill pond in all its empty glory, I opt for that. We approach the lifeguards explaining the brain tumour and learning to swim; amidst smiles we get our personal lifeguard, he opens the gate and lets us through. 

These lads and ladies, dressed in blue and red at our local council run leisure centre do everything with a smile. I was offered (rather than having to ask) the metal steps on wheels when I tried the big pool last week; not a glimmer of judgement on their faces as we chat about swimming strokes and two 'young' ladies occupying their time in the baby pool.

Tuesday, June 11, 2013

Impressions of my Brain Tumour sixth year scan...

The results of my sixth annual brain scan got lost in the midst of my recent breast cancer fuss...There were no signs of any growth...all was the same as last year. 

But I didn't whoop or go out for a celebratory meal, I pondered on how a single moment changed my life:

The bulb in my head had bulked out over a period of ten to fifteen years.

My first symptom to trigger the alarm was the Tonic Clonic (Grand Mal) Seizure which woke me from my sleep at 01.00hrs on November 18th 2008.

The seed of hindsight revealed the blighter had been trying to warn me of its presence for a while:
  1. Regular headaches took a couple of days to 'crack' Paracetamol then Brufen every 4-6 hours eventually shook them off. Back at home after the surgery I discovered I ran a paracetamol store; half used packets hid in every handbag, in drawers by the bed, in the car,  in my office drawers, drawers in the kitchen..EVERYWHERE...I blamed the headaches on driving and female things!
  2. Mr H would gently pull my hair away from my scalp as I sat on a stool in front of him in the evenings when my headaches persisted, the spot I asked him to pull was where the tumour was growing!....blamed that on stress of the job.
  3. I kept tripping up in 2008 when I walked from the train station to the office in my new summer scandals... blamed it on the new scandals obviously!
  4. Nausea welcomed each day...blamed that on hormone imbalance.
The raised intra-cranial (inside my skull) pressure as a result of my slow growing tumour caused these symptoms which I managed and generally ignored.

My tumour had spread like icing on a cake across my head onto the left side of my brain

R - L    Tumour on the right

The bulk of my tumour was located in the The right frontal lobe of the brain 

I was 'lucky', I presented at my local hospital which is a regional neurosurgery unit, the tumour was discovered on a CT scan in the middle of the night and I underwent life saving surgery the following day. 

An anxious weeks wait to find that my tumour was a Grade One Meningioma was filled with hope that I would be able to walk again.

  • Currently there is NO cure for my brain tumour which could not be completely removed by surgery. Radiotherapy and possibly more surgery may follow if it starts to grow again
  • Brain tumours are the biggest cancer killer of children and young adults under 40
  • Over 8,500 people each year in the UK are diagnosed with a primary (starts in the brain) brain tumour.  
  • That's 25 people diagnosed a day but the actual figure could be much higher..
  • Ten children or teenagers a week are diagnosed with a Brain Tumour
  • The Head Start: Be Brain Tumour Aware Campaign is raising the profile of this condition in children and young adults with the aim of reducing delays in diagnosis and treatment
  • 3500 people loose their life to a brain tumour each year
  • Less than 2% of cancer funding is spent on Brain Tumour research
The Brain Tumour Charity is the largest dedicated funder of brain tumour research in the UK.  They fund at least £1 million of research every year; all through donations. 

Please support research into brain tumours. I would like to know why my meningioma tumour grew and how future growth can be stopped.

Friday, June 7, 2013

Help I think I have 'First Degree Bingo Wings'

I am sofa dancing as we watch a film about ballroom dancing, arms raised and fingers pointed I copy the sharp tango moves. A squeal slips from my smile as I call Mr H

OMG the flesh under my arms moved; I show him my Tango arm steps:

Did it move?

 a bit ...he laughs as he names it 'First Degree Bingo Wings'

I fetch weights 

and start pumping my biceps;   

I don't want Bingo Wings.. .not 50 yet; I need to go to the Gym

You don't need the Gym; lift more watering cans at the allotment

Down at the allotment my knees cave in as  I try to lift TWO watering cans: 

The cans are like moving boulders so I collapse into my throne to watch Mr H as he does all the work.

Energy, when I have it, feels like bags of gold dangling from my heart, something I cherish not knowing if the bag will be refilled. 

Later this month I am changing my epilepsy tablets, I am in the driving seat regarding the timing of this change. I have been on this journey many times and know that energy sapping is a real risk. 

July will be being a quiet month for us so, like packing my case for a holiday I prepare for a period of low energy in the height of summer...lounger in the garden; deckchair at the allotment and sun tan here I come!!

Tuesday, June 4, 2013

Hats on for Highgrove

The golden rays hit my head like fireballs, I rummage in my hat drawer and drag out my brown cotton 1960s' cap.  Mr H nips out for a haircut and car wash despite the fact that I have told him the Prince and Duchess will not be taking tea with us. He has a day off from work for our early birthday celebrations; a tour of His Royal Highness The Prince of Wales and the Duchess of Cornwalls' Highgrove Gardens followed by a champagne afternoon tea. 

Mr H paces the kitchen floor as I turn from side to side to check my refection in the glass microwave door. I demand a photo for my blog before we set off, I snatch a second hat from the drawer as we leave...

We are asked to leave cameras and phones in the car and surprisingly I feel free as my eyes can seek without occupation.

The tour guide makes the small group giggle as he shares snippets of rehearsed gossip; we meander along behind him as he introduces us to plants and sculptures as though they are his best friends. He provides us with an insight into the methods used to maintain the organic principles used for the gardens.

Like a snake the group winds its way into the cottage garden, as we pass through a gate calm strokes its fingers across my soul, a lump rises in my throat and behind my sunglasses tears brighten my eyes. I cannot explain why this garden touches me as it does.

I turn slowly as the waves of colour engross me; multi coloured Aquilegias, my favourite flower are dotted everywhere; round headed dark purple Aliums, which I have planted at home, sway in the breeze. The garden is tucked between meticulous hedges and my urge to sit and absorb the tranquillity is broken by the need to move on. 

Mr H offers me the shooting stick he is carrying and I sit as the guide shares more Latin plant names and stories about the gardens' development.

He teases us with glimpses of the wild meadow before we arrive at the path surrounding it. My eyes devour the golden glow of millions of Buttercups, interspersed with blue/purple shades of bluebells and Carnassias mixed with late flowering cream and yellow daffodils. They share the field with fresh green grasses and budding wild flowers awaiting their turn to burst into colour. 

We pass through a maze of garden rooms, each one is individual yet they blend together like waves in the sea, I could go on and on....

My Brain Tumour experience has switched on the headlamp of wonder as I admire small miracles of nature. It was a privilege to see these gardens, I will return..

Not wanting to be outdone by the Queen of hats!, we left with a cap for Mr H purchased from the Highgrove shop.

Oh by the way I changed my mind about which hat to share this day with...

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