Every day is a bonus...

In March my heart sunk into concrete when I first stepped into Oncology's revolving door as my mind screamed, walk out walk out. I hung my head and stared at the pale brown laminate floor under my feet until I reached reception...

Can I help you?

I have an appointment to see the oncologist but don't know where to go...

I don't belong here I told Mr H as we sat nursing drinks at a round orange table in the WRVS coffee shop before we went up. In the lift  I played spot the wig while my mind's chatter drew a picture of the pale, grey faced, ghost like figure I would become. 

Upstairs in outpatients I saw a lady with no hair smiling. Smiling!

Then last week exactly six months later, when I told Mr H I was going to rip my wig off in a Marks and Spencer's cafe he said please don't, the locals will scatter in fear. So I have ditched my wig because one minute I feel like I am in the Caribbean sun then the next I tug my hat back on because my head is as cold as a winters night. 

...now I hardly notice the revolving door as I chatter and giggle my way in to greet Derek (who manages the WRVS shop) as I buy my coffee. His welcome smile makes my morning...

You are looking bright are you coping with the treatment OK

Thank you... not too bad... and we chat about the importance of making the most of every day in my world every day is a best dress day I tell him so he shares his mantra with me..

Every day is a bonus...

After six doses of chemo and my first weeks worth of radiotherapy the pale ghost is no where in sight

I have now learnt through Mindfulness not to engage with the silent chatter that goes on in my mind. Now I notice it then watch it float by...

It only takes a pin to burst my bubble

Vulnerable was first linked to my name two years after my brain tumour surgeries.

I played with the word in my mouth, ran my tongue around it, said it slowly. Vul...ner...able...

Me?

Everyone said I was positive, a fighter, strong... 

But am I?

I should be...

But I had lost my old life. Gone. Except for Mr H, my family and a few friends who stuck around like glue despite my bad days when everything seemed blacker than coal.

Now I am dealing with my breast cancer, the surgery which has changed how I look and the chemotherapy which has taken my hair. I am not fighting it. How can you fight cancer? It's there. Only treatment and a positive attitude can keep it at bay, maybe cure it even. I haven't got the energy to fight. Keeping a smile on my face as I go from appointment to appointment, spending time at the allotment and trips out with friends drain me.

I stay safe and cosy in my 'doing OK' bubble when a smiling voice answers a question I have asked twice before, a friend listens without offering advice, or a phone call is returned when agreed.

But when someone doesn't reply to an email which took a bucket of emotional energy to write or when chemo is delayed because my neutrophils are too low or I have to ask a nurse or doctor to wash their hands instead of it being automatic, my voice wobbles and my lips tremble. 

These are the pins which burst my bubble...

Gawping at Brain Scans; Some News

As I wait for brain scan results, time flows like treacle.  I tell myself it will be fine and part of me believes it, after all, it will grow if it grows, like my addiction to chocolate I can do nothing to change things. 

I applied for copies of my brain scans last year, I wanted to scrutinise my brain, the tumour and its effects. I have spent many happy hours poring over the pictures, some may think I am strange but as a nurse I need a scientific approach to come to terms with the changes in my life. Detailed analysis, explanations with no knowledge assumed and understanding provide the key to my coping strategy. 

Scan Picture 2012. The black hole mid right (left as you look at the picture) was the tumour site

Today is the day, I tuck my list of questions and scan pictures into my pocket; like a quiz master I want to know what things mean on the scans; why does my head still feel heavy when I try and read sitting up; why do I get pains along the left side of my head, why is my epilepsy so hard to control.  My ever patient Consultant, listens and explains.

My fourth annual scan brings good news. No signs of growth. Those four simple words are like daffodils slowly opening in the sun to reveal their splendour.

Good news or bad, retail therapy is always the solution, my footsteps are as light as the wind as Mr H and I hit the shops.  I plan to trip into summer with trendy footwear, Mr H raises his eyebrows when I show him what I want, he patiently watches while I try them for size. High heels are history but Cinderella Dawn is never too old to go to the ball.

Technorati Tags
brain-scan, results

Fighting ...how many rounds...before the bell rings

The words of a friends' friend yesterday made me think... The sooner you stop thinking about what was and concentrate on what is you will find peace...wise words from someone I hardly know

Fighting is part of recovery, a fighting spirit part of success... 

Round One was to get back on my feet and walk
Round Two to get back to work
Round Three to get back behind the wheel of a car
Round Four to find something to replace work
Round Five to get my epilepsy under control
Round Six to get back behind the wheel of a car; again 
Round Seven .......

Am I fighting a battle or war...if so is it against the tumour and its effects.... or am I making a vigorous effort in the face of difficulty...

In the ring not all rounds have been won:

Round One I drew, strong legs knocked to the ground have been replaced with weaker wobbly ones 
Round Two I was knocked out but staggered back up onto my feet when I won Round Three.
Round Four is a constant battle. 
Round Five I won, wobbled, saw sparks and fell in the corner
Round Six The ref counted to Ten ...beyond my control

My adult life has revolved around personally driven challenges...Nursing qualification, Climbing mountains...Honours Degree... Masters Degree..move up the professional ladder...pass piano exams...

In the words of Paul McCartney..spookily playing on the radio at this very moment..

When I find myself in times of trouble, 

Mother Mary comes to me,

Speaking words of wisdom, let it be,

And in my hour of Darkness 

She is standing right in front of me

Speaking words of wisdom, let it be

Let it be, let it be, 

Let it be, let it be

Whisper words of wisdom, let it be....

May be for me it is time to accept and relax into my new life keeping hope and motivation alive but not seeing living as a battle to be won...

Easy on the buses.......?

To catch my bus requires split second timing, if I leave too soon I lean against the bus stop like a drunk after a night on the booze... leave too late with no chance of breaking into a run and I wave my fist as the bus passes....

When the bus stops I rejoice at the hiss when the step is lowered, ...snarl when the driver doesn't think  ...grimace when faced with two steps on old buses...hoping one heave ho of my leg will do.

All aboard, I spy an empty seat labelled Please leave for the elderly or less abled..and plonk myself down. Relief reigns where embarrassment once hovered. In the early days of my adventures on public transport any poor soul who sat by me and spoke was bombarded with my brain tumour story... flutters of relief crossed their faces when I reached for the bell to get off....

My first outing after surgery was with a carer in tow... a lesson on how to get on and off a bus safely was needed. A little bit of shopping completed we sat at the bus stop and let two buses pass ...after an hour the same bus driver returned. Falteringly we got on.... He had seen us sitting there the first time...me in my helmet (that's another blog..), my carer in uniform... we tittered all the way home. My care plan read...can't read bus timetables needs another outing!! I loved those trips.  

Nowadays I am a seasoned bus traveller and know the timetables off by heart....I choose my seat in order of preference:
A) a front forward facing seat on either side by the window; even if I have to squeeze myself into half a seat I will.....to suprised stares
B) an aisle seat with my right leg in the aisle; even if I have to ask for a bag to be moved, sometimes my hard stares are required
C) Please No...front aisle seat with my left leg in the aisle:

Option C ..is like being on the waltzers at the fair-ground... with no carriage sides; I prepare myself for the white knuckled ride. Buttock muscles on full alert, hands gripping under the seat (no rail in front today). Every corner turned or island rounded.. my left leg grip on the floor is tested....my buttocks squeal, fist clenches. Muttering under my breath. you can do, you can do it, you can do it....the alternative...a helter skelter slide down the bus on my bum...

Near my destination I search for the bell...every bus differs...I let go of my seat...press... re-grip my seat... phew... safe again....

I wait until the bus comes to a complete stop before I move. Meerkat stares from passengers ....steps are extra slow as my left leg sleeps. 

Finally the step challenge rears its head again...this stop is in the road.. no kerb to reduce the height. Tentatively I drop my foot onto the ground pulling my other behind. Aerobic workout complete...now a few minutes walk to Pilates...

Extreme emotions... my new normal

Calm used to be my middle name. Now.. Frustration. Anger. Laughter. Fed-up-ness. Giggles. Tears. ...are as unpredictable as wind on a calm day..

My Dad used to say his bladder was too close to his eyes..I too am good at the waterworks... now I could fill a reservoir...drought...not in our house....

At the moment my OK and Not OK balance on an uneven pendulum. The latest test of endurance is the news that I have A TEN PERCENT CHANCE OF GETTING MY SEIZURES UNDER CONTROL. Yes I am shouting!! I have tried so many epilepsy drugs now my chance of getting back behind Dorothys' driving seat slides beyond my grip, like a boat moving down the slipway into the sea...

Benign tumour indeed...

I recently read a snippet from the Canadian Brain Tumour Foundation on Hammer Outs website  Myths about Brain Tumours Two points poke me in the eye...

• The end of treatment does not mean the end of the experience of having a brain tumour and the person may need to adapt to a “new normal” depending on long-term effects the person may have from treatment....I add in here and complications...
• Any brain tumour is life-changing regardless of grade or stage.

These points take me back to the Neurosurgery Registrars wise words when I was first told I had a brain tumour..if benign you will live but it will be a different life...I am reminded daily of the truth of those words...

My New Normal...I like that ....But my friends would say I have never been normal...Ha ha

My anger and frustration fizzle...

I dig deep to find my coping strategy for this one...maybe I will be in the ten percent group that the new drugs I am about to try, capture...if not there is always public transport, my wobbly legs and the gift of lifts from friends...

The Rug of Hope

Hope is everything

I hope to laugh as much as I cry, 

Dance as much as I stand still, 

Cope as much as I can, 

Live for today,

Find the strength to accept my changing reality.

Me