Sunday, February 22, 2015

Feeding my soul with Hope

Today I lie on the settee to read the amazing Chris Lewis's latest Cancer Community Blog about Hope.  I am tired to my toes. So shattered my head is punching its reminder that a brain tumour lurks. Here! Throb. Here. Wince. Mr H will you pull my hair on the top of my you used to...

But this total tiredness and horrible headache are worth it. Every thump! Every paracetamol I will need to swallow to kick it out of my throbbing skull.

Yesterday Mr H and I climbed aboard a train to London. The start of a well executed plan. To meet up with my gorgeous niece, Mom and sister. To realise a dream. Lois's dream. And celebrate all of their birthdays! I am celebrating too. I have been discharged from Breast Cancer Oncology. 

I consider myself cured I announced proudly to my oncologist when he said he would leave me with an open appointment. I am driven by Hope!

Lois wanted to see the Billy Elliot Musical. She has hoped to for years. So when I was between doses of chemotherapy last year I booked the tickets for us all. As I paid I said to Mr H I hope I feel well enough. I hope I have enough energy to get me there and back...!

In the theatre, I sit deliciously huddled by my precious Lois, Mr H, Mom and Mandy by our side. 

When Billy reads out the letter his Mom wrote to him before she died, tears drip down my face. I too have dappled with death but today I am alive. Truly alive!

I listen to Billy describe what it feels like to dance and whisper to myself that's how I feel when I sing... Like sparks of electricity I feed my soul with hope...

Thursday, February 12, 2015

Falling off my tight rope

I am trying to float on a stress free cloud. Hold my cortisol levels in check. To allow my immune system to do its hard healing work. And help stop the cancer coming back...

I am actually walking a tight rope. If I sway to the right I am in calm safety. Move to the left and I drop intro the depths of depressing stress. In one second!

A good nights sleep, an afternoon hour on the settee and reading a good book all keep me on the rope. Breathing into meditation, singing my soul out and having the energy to walk in the sunshine help me to the sway to the right.

But when I discover that my annual brain tumour MRI scan has not been booked as promised when I chased it, as requested by the department last summer. And a follow up appointment has not been scheduled for two of my Consultant reviews. I wobble to the left.. I keep myself upright by making a phone call. Then plummet into trembling, hang flapping tears when I am told the person who can help me is off for the next three days...

I have to send several emails and pick up the phone a few times to stop the trembling tears. But the fall has damaged my head, heart and mind. Calm is out of my reach. My heart beats too fast. My body is filled with Anger induced Cortisol. I am at risk of getting worse. Dropping into a black hole. My cancer coming back.

I once wrote that It only takes a pin to burst my bubble but nowadays my bubble is already burst and all I can do is try and stay on the tightrope. Fractured Hospital systems have caused me to fall...

At the moment I don't have the power or energy to get back on the rope so for a while I have to stay at the bottom and hope rest will help me get back on my feet.

The next day,...

Following my email, the kind and efficient senior nurse and one of the medical secretary's got my scan appointment booked for next week. And booked me a date for one of my consultant review appointments. Lesson is always ask for help but I know sometimes we don't know who to ask....

Sunday, February 8, 2015

Paint the sky blue

Cancer has taught me that sometimes in life you can't wait for the good weather, you have to jump in and paint the sky blue.

I have one stab

One go at it

No time to wait for 'tomorrows'

So in December, on a grey Friday, I stepped through the Choir room door for the first time. When Liz, our leader, announced the lists were out for the ChoirFest at St Georges, I walked over and added my name...

Seven choir practices until the big day, and the Alto part to learn for three new songs. 

No word sheets are allowed up on stage Liz says, so learn them Ladies and Gents...

In practice I sing myself inside out, words in hand, head hung to read. Then one of the ladies says songs are easier to learn by listening and absorbing, read over the words at home but not while we sing...

sort of like osmosis I say with raised eyebrows as she smiles her yes in reply. So I buy a digital recorder and record us in full force then press play back at home and sing to heaven. Mr H wanders around humming the tunes and picking out some of the chorus he has absorbed! 

Mr H drops me off for the coach. A gent offers his hand to help me on and some lovely ladies save me a downstairs seat. As we clamber off, my bag, full of bottled water and a healthy cancer fighting lunch, is whisked out of my hand by a bubbly group member for the few steps uphill to the majestic old Church. The same lady finds me a seat and fetches me coffee as we excitedly munch on our lunch. The auditorium doors open and a flurry of coat carrying figures dressed in grey, black and white with  peeking red flashes, bustle through to save us seats together. So to admiring glances, I pin a red flower to my hair... 

No eating in the auditorium we are told but I nibble on a banana, pumpkin seeds, a few nuts and sultanas which I wash down with endless slurps of water to battle my relentless fatigue. I whisper to my bubbly companion not to worry if I go quiet, I zone out and meditate for a few minutes even when surrounded by noise I tell her...

During the afternoon's two BIG SINGS I am one of 500 to learn six new songs. Then like Willy Wonka's Chocloate factory we blow the roof off. 

By the evening I am struggling to put one foot in front of the other and my head is buzzing like bees in a hive so I call Mr H to rescue me after our slot in the concert; we are first. Then I dig deep to release my last shreds of energy. 

I stand on the stage amongst 120 members of Liz's five 'Community Voices' choirs brought together for the day. Liz, with her dark hair also adorned with a red flower, glitters from the inside in her flowing silver coat.

Liz raises her hands...My heart beat roars and my eyes fill with tears as I open my mouth and sing...

High flying doves, please lead me and I'll follow you....

At home when my body falls asleep my head still sings.. 

Only remembered, only remembered, 
only remembered for what we have done...

In case you are interested we sang:
The Olive Tree by Tom Springfield/ Diane Lampert arr.David Weaver
Only Remembered by Music: Ira Sankey,1891/Words: Horatio Bonar  (now widely recognised from the War Horse)
Jazz Gloria by Anon!

I cant wait to get my hands on the CD of the day!

What would you do to paint your sky blue?

Sunday, January 25, 2015

The musings of a human cat...

On our way to the airport departure lounge in 2010 at the top of the escalator I was met by a smiling face and large display board. I stopped as I read the words Brain Tumour...

Hi I'm Sue from a Brain Tumour Charity

Mr H, following behind with the bags, piped up over my shoulder: yes Dawn had one.

So you are a survivor. 

I told her I was delighted to see them there, dropped some money in her collection and carried on.

But those words, that title stayed with me! 

I guess without surgery I would have died. They warned me there was a tiny chance I could die during the operation; they wrote it on the consent form. Risks.....Death. 

Ten days later I remember opening my eyes after more surgery to remove a brain abscess (a complication of my tumour surgery) to see one of the lovely physiotherapists with tears in her eyes at the end of my bed. 

I cried out I don't want to die...I haven't written a will.

So am I a human cat and have I used up three of my lives?  

Before I wrote Brain Tumour Survivor on my twitter tagline I hesitated, but did it because Sue had called me one. I am not normally a sheep and Survivor was not a word I would have chosen to describe myself! So I stopped baaaa-ing and deleted the word. I don't see myself as an Epilepsy Survivor so why with the Brain Tumour? 

Instead I have learnt to live with them and their consequences. They change my life but I still have a life. I am lucky.

But dealing with Breast Cancer brought death back into the room. Not because death was imminent, not even close, but because it comes holding hands with the word Cancer. 

Once again I have looked Death in the eye. But I still have time to breath the air, watch the snowdrops peek through the soil and spend precious time with my true friends and family.

And swim. And sing....
Remember to...
Dance like there's nobody watching
Love like you'll never be hurt
Sing like there's nobody listening
and live like it's heaven on earth
William W. Purkey

Tuesday, January 20, 2015

When my mind runs away...

In the last six years I have spent hundreds of hours waiting. I have waited to see a nurse or a surgeon. I have waited for a Radiographer to call me through for a scan. For my name to be called, a sign that it is my turn...

I am a practised wait-er. I would like to say an expert but I sharpen my waiting skills all the time.

When I was a working wait-er I was a do-er, I would carry notes to be read, minutes to be drafted, reports to be edited. Then I stopped work but was still in full bag mode. A bag stuffed with magazines, a novel or two. I tried to read away my rapid heart beat and sweaty palms as I waited to be called in...

Since I started writing my Blog I carry a note book too, to jot down new material or a sound bite snatched from a conversation to use at a later date. But I find that anxiety is not a good companion to writing, ideas get stuck like cars in a traffic jam. 

Today as I sit in the hospital waiting room, my mind chatters like children whispering behind their hands.  I take a deep breath and blow the air out, sometimes two of these changing breaths help me calm my mind.

But, like a rapid river, the words keep flowing....I don't know why you are even thinking of having this surgery...the Blog Award tickets go on sale today...I must get a walk in...loose some weight...remember to ring Sue....should I go ahead with the surgery or not...

So I call in Ruby Wax, who has given me a bag of tools to Tame my Mind. 

I lower my eyes to the floor, plant my feet on the ground and free my back from the curve of the chair. Then I ask myself what am I feeling? 

I lead my thoughts mindfully from my head to my toes, I stop at my belly. 

A fist like knot is screwed up tight. There sits the cause of my river of words.

I breathe into the knot then as I breathe out I imagine the knot melting away. I breathe in and out slowly and like a large cloud dissipating watch the knot reduce. I breathe in again and as I breathe out watch the small clouds start to move away. 

As I pull my breath into my lungs, my thoughts are now entirely focused on the space that was taken up by the knot. 

In its place is a beautiful blue sky...

I open my eyes and smile.

"The best cure for the body is a quiet mind"
Napoleon Bonaparte

Saturday, January 10, 2015

Fallow days...

On January 1st, when the first curve of the sun appeared above the horizon I expected my energy to rise with it. A new year. A new start. Get up and go I thought. And tried. 

I feel great I told everyone, I have been cured of cancer. Now I will get on with living.

The first week we stripped the Christmas tree and packed the decorations into their boxes for another year. Back in the warm baby pool I went for a swim. I lunched at the deli. I spent a whole morning back at the hospital to have my first annual boob service! I hitched a lift to singing and sung my soul out...

But the last few days I have hardly had enough steam to get washed and dressed let alone do my daily ten minute slow amble along our lane, Like my attempt to return to work a few years ago, it hasn't gone to plan.

I moan to a friend, Jane on the phone: my energy has gone poof. It has floated up the chimney and I have spent the last couple of days lying on the sofa watching daytime TV. I hate it 

Now Jane was listening I grumbled on like advancing thunder...

I am fed up of feeling exhausted, I wish Father Christmas had brought me more energy....

Jane spluttered

For goodness sake Dawn, you expect to be back at the starting post already! With what you have been through! Farmers allow their fields fallow years! So come on. I expect you will need a couple of fallow days a week for a long time yet.

You sound alive. You are alive. I can't wait to see you...

So now I will wallow in my Fallow days. Enjoy them rather than fighting to sow more seeds....

Maybe I will finish knitting the alpaca cardigan I started almost two years ago. Crochet more flowers...

The secret of change 
is to focus all your energy, 
not on fighting the old 
but on building the new

Wednesday, December 31, 2014

It is time to press reset...

I can't wait to slam the door on 2014 but before I do I will flick through this twisty, turvy, stormy year.

I started it with a
Caribbean suntan and was awash with plans to celebrate my 50th year of life! But instead days full of curtain closed darkness crept in when a consultant said the words breast cancer. To me. To my face. My breast.

But rather than dwell on those dark days I shall end the way I started; in the sunshine...

The good things:
I got the chance to get bald. Stripped back to my baby self. Today I want to stand on the spot, hold my arms out and whirl. Shout I am free,  I love my new funky style!

I launched myself into a world full of hats! Tried out styles I would never have dared before, I wore jaunty berets, Downton cloches; a c
aribbean calypso of colours... a life without hats is a thing of the past.

Friends and family drove for hours just to sit and listen; to take me to see the sea and to stand on a beach. They made torturous traffic logged journeys to get me to oncology and back...Thank you are two words which could never show what these things mean to me!

I have learnt to keep my cortisol levels in check and stress levels on empty. Because hand in hand with rest and a focused calm mind (achieved through mindfulness and meditation), they allow my body to heal, kick start my immune system and create space for my mind to refresh.

I have a third chance to get on with living! To let my heart sing. Another reminder that EVERY moment COUNTS! Every single second! I shall wrap myself in every smile. Cherish my family and every friendship. Drink in the beauty of every sunset. Treasure every breath shared with My Mr H...

Thank you my friends and social media family for staying with me this year. 
Thank you for your tweets, messages and emails of support. 
Thank you for telling me my Blog gives you hope and that it helps you to keep going when your own strength is being tested.
Thank you for giving me a chance to become the best individual health Blog 2015...

It's time for me to press reset and start a new chapter...
and wish you a Happy and Healthy New Year!

Monday, December 22, 2014

Are you with the wheelchair?...

Mr H is my legs as we reach airport security on our way to a wedding...

...with a wave of her arm, a suited lady directs fellow travellers to a queue to be scanned. She glances down at me, stripped of my coat, scarf, bags, belt, all metal objects except the plate in my head, then steals my smile as she asks Mr H

Are you with the wheelchair?

Aha. I had forgotten once I sit in a wheelchair I am a wheelchair! journey with airport special assistance has begun... 

The smiling ground crew collect me from the gate and with fellow wheelchair users they escort us to lifts, then across the Tarmac to the aircraft ambulift which awaits us...

Yippee we all shout as the fridge like lift whirs us into the air to rest level with the closed aircraft's side door. Our entry into the warmth. Our man knocks. We wait. Tap tap. We wait, shivering in our coats. Knock knock knock...

Then out of our window we spot the able passengers beginning to snake their way out to the aircraft. We all know that they will now be allowed into the warmth before us even though we were there first.

Fifteen more shivering minutes pass with us suspended mid air in our ice cold, wind chilled, fridge. We watch with opened mouths as the aircraft is hooked onto the tug. I bang on the window and shout

wait for us

No one looks up!

Our man hammers loudly on the closed aircraft door. We wait. Knocks louder... then to squeals of teeth chartering relief the door is opened.

Do we get an apology? Not on your life!

When we land we are told to stay seated so the able bodied passengers can get off first. They climb aboard a waiting warm cosy bus to be transported from the aircraft to the airport terminal. 

At last we are ambulifted onto the Tarmac only to become a three carriage train: Mr H is my driver, a mother pushes her young child as he clutches his Spider-Man toy and an elderly man struggles with his wife in her chair. It is a long dark walk as we are escorted along the normally unseen outside trails of Bristol airport on a wind chilled winter evening...

Shivering we pop out by the luggage carousels to collect our lonely suitcases. Everyone else has already left!

But when the Groom jumps in early with his eager I do and love glistens in his brides eyes, the journey I have travelled this year to witness such joy becomes a distant memory...

Monday, December 15, 2014

Now the storm has passed...

Barry white's words are singing in my may be winter outside but in my heart it's spring...because when I saw my oncologist he said your bones are cancer clear. One simple sentence which like a red traffic light,  brought our jumble of fear, questions about the future and sleepless nights to a stop. 

Once again I have a future, it will be filled with an extra scan each year, but I know how to do annual scans, my brain tumour.saw to that.

Mr H and I keep casting glances at each other and grinning like lottery winners. We are lottery winners! Bad news has left us alone for Christmas. Mr H keeps hugging me extra hard and when he comes back from a run, with sweaty tears he declares his utter joy and love for me. 

Its a GTBA week all round. We are off to a wedding. This wedding has dangled like a golden carrot as I have trudged my way through this year of cancer.  I won't need an excuse to wear a hat and eat cake!!

...and I have made it onto the short list for the UK Blog Awards 2015 - Individual Health Bloggers Category. 
Thank you all for your votes which got me to this point! 
I raise my glass to you...and to further raising awareness of the impact that brain tumours and breast cancer have but showing that even with these life can be enjoyed

Oh and before I go... GTBA is my term for Its Good To Be Alive

Dance, Smile, Giggle, Marvel, Trust, Hope, Love, Wish, Believe. Most of all enjoy every moment of the journey and appreciate where you are at this moment instead of always focusing on how far you have to go.

Mandy Hale

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