The Water of Life

When I found out I had cancer the oncologist said it first…

Drink plenty of water.

Then the nurses in the chemotherapy unit repeated the message as they dripped the red and yellow drugs into my vein…

Drink plenty of water.  So I drunk more

When the nutritionist reinforced the water mantra that comes with cancer, I swapped my small glasses to pints…

But then I discovered drinking plenty of water helps with fatigue. 

            Now I drink a reservoir every day.

But did you know that Water of Life is also used to describe distilled alcohol especially whiskey.  The ancient term Uisge beatha which is Gaelic for the Latin Aqua Vitae or “water of life” was altered in the 18^th Century to Usky and later to Whiskey.

Mr H and I don’t drink the other “water of life” It never passes our lips. I haven’t drunk a drop since 2008. I can’t say I am a tee total as I rarely drink tea. The occasional sparkling water with a slice of lemon fizzing at the bottom is our champagne.

I am back where I started. As a young adult the only alcohol I would lift to my lips was a snowball at Christmas. I liked the creamy, sweetness. But when I started working and going to pubs with friends and clubbing with the girls; I trained myself to like the taste of lager, and cider…it was the thing to do.

I recently read a page turning book The 12 Step Warrior, which kept me so riveted I finished it in 2 days. It is about a life almost ruined by alcohol and circumstance. But not only did Peter Skillen free himself from the grasp of alcohol; Peter is now a published author, accomplished film maker and Martial Arts expert.

I have seen the damage that alcohol can do. Seen it wrap it arms around People I know. Some find it easy to walk away from the warm alcohol induced hug. Others cannot. And as the grip of alcohol tightens, I watch it squeeze out life as the malignant dependency grows. 

I feel lucky that my health stopped alcohol fizzing up my nose or passing my lips and dulling my mind.

I prefer hugs from Mr H.

Be drink aware
"There is a sliding scale of drinking too much but it starts at a much lower volume than most would expect. Understand your drinking by clicking here" 

Who am I now?

One of the most common questions asked when I meet someone new is What do you do?

I used to reply I am a nurse

I knew who I was, I had been that person for over thirty years, I grew into that role. I would drop everything for someone in need. I was a carer. A leader. A finisher.

But now I am split in two, maybe three, possibly four...

Nowadays approaching the crossroads is Dawn the nurse who still wants to step in when someone is ill. She wants to lead projects. She wants to work in a charity, helping others...

On the opposite track is Dawn the explorer. She starts projects; crocheting flowers, knitting a cardigan, researching all sorts of ideas before leaving them unfinished in a corner. Onto something new...

Then there is Dawn who wants to forget that cancer or brain tumours exist, concentrate on living life; socialise as much as my energy allows, plan holiday after holiday, drink coffee and eat cake (home made of course!)

After my brain tumour I had settled on a route. But now after breast cancer I am a Blogger in transition. Questions whir like a tornado in my mind. Do I need a role any more? Does it matter that I am not finishing projects? Am I Shackleton but without the ice and snow?





One thing I am sure about is that this new curly haired Dawn will enjoy exploring who I am now!

Difficulties are just things to overcome, after all

Ernest Shackleton

Raising Awareness of Bandanas for Brain Tumours

Today is Bandanas for Brain Tumours Awareness Day

As I wait for the results of my 6th annual brain scan to check all is well, I reflect on how a brain tumour changed my world. 

In 2008 the shock diagnosis of a brain tumour catapulted me into emotional shut down.  When I asked the Neurosurgery registrar to give me the hard facts he looked me in the eye and said if the tumour is malignant you will have about 18 months to live; if it is benign you will live but it will be a different life.

My overriding thoughts were; benign that’s good isn't it? 

Get in there, get it out and I will get on with my life! 

The words you will live a different life were but a background murmur.

I had no idea what a meningioma was.

                                                           

I learnt that it was a tumour growing in the meninges; the layers protecting the brain and spinal cord.  Meningiomas usually grow inwards putting pressure on the brain. The majority of Meningiomas are low grade (benign).

In my opinion the words benign and brain tumour are not comfortable bed partners. Benign is defined in the Oxford Dictionary as: 1.gentle, mild, kindly 2.fortunate, salutary. 3. (of the climate, soil) mild, favourable. 4. In medical terms not malignant.

Other than not malignant; I would never associate these definitions with ‘brain tumour’. In the brain tumour world, the term low grade and benign are used interchangeably; low grade seems more apt. Brain tumours are Graded between 1 and 4 depending on the degree of malignancy/speed of growth. Mine was Grade 1.

Any growth inside the closed skull can cause damage as the tumour grows. In the case of slow growing meningiomas, the brain accommodates gradual growth like a bulb expanding in soil and the tumours can become quite large before obvious symptoms arise. 

My parasagittal tumour (arising across the middle - between the two hemispheres of the brain) had spread like icing across my head before it caused problems.

Brain Tumour Research is chronically underfunded in the UK, receiving less than 2% of all cancer research funding. Yet research is vital to improve the treatments and diagnosis for the thousands of people diagnosed with a brain tumour each year, ultimately saving lives and improving quality of life.

Three important Charities which fill some of the gaps in Research, information and ongoing psychological support for patients and carers are 

The Brain Tumour Charity http://www.thebraintumourcharity.org

Brain Tumour Support http://www.braintumoursupport.co.uk

Meningioma UK http://www.meningiomauk.org/

If you fancy doing a spot of fund raising I make a plea for these organisations.

March is Brain Tumour Month and Wearing a Bandana for Brain Tumours will give fund-raising a head start. 

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 head...like 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...

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....

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?

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

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

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

Socrates

After your chemotherapy has finished...

It may take some time