Tuesday, May 12, 2015

There is no Present like Time

Tick Tock, Tick Tock; whatever I do the hands on the clock still click Tick Tock as Time waves goodbye. 

With good health I squeezed as much do’ing as I could into every working day. Then at home I stuffed more into my spare time too.

How are you people would ask...Very busy, not a second to spare I would proudly reply… I could do with a few more hours was another and I just don’t know where the time goes was my favourite…

I woke up on a Monday and all of a sudden it was Friday. A whole week had passed and as hard as I tried I could not get it back!  But with my rumbling health my ability and desire to squeeze, cram and stuff things in has diminished. 

I often feel worthless. Have no value.  I have believed self value came from output and achievements at work and in play.

But when a friend visits, her face frowning with stress, I listen and listen and offer a cradle of support. As she leaves with a smile on her face a wave of self worth weaves its way into my grin 

I have Time which I can give freely to others.

I have ears which I can use to actively listen.

I have years of experience embedded in my brain which I can offer when my energy allows.

On my cancer journey I am taken to hospital appointments by volunteer drivers who give their Time for free. And friends think nothing of using their Time to drive many miles for us to share a day out.

The sun warms my heart when a friends offers her Time to collect me for a beauty appointment, while another picks me up and brings me home after a morning of singing my soul out!

There's no time like the present
No Present like Time
And life can be over in the space of a rhyme
There's no gift like friendship
And no love like mine
Give me your love to treasure through time

Georgia Byng - Molly Moons Time Travel Adventure

Tuesday, April 28, 2015

Magic at the Marble Arch....

The Taxi door opens and like Willy Wonka I stumble, stick first, out onto the pavement. Our bags are whisked inside by a smart suited doorman. As we step through the door of the Montcalm Marble Arch Hotel we are greeted by Laura, our dedicated Guest Experience Manager. 

We are treating ourselves to a stay at this newly opened, elegant hotel hosting the UK Blog Awards so that when my fatigue digs its fangs in I can flop straight into bed.

The key adorned ticket invites us to enter the Awards evening via the red carpet at 7pm.

But when I take a peek, over 30 steps await the able bloggers. So back in the hotel, we pop out of the lift below the steps and cameras!

Inside the Wonderland of trees we are greeted by a giant green, grinning cat, toadstools and piles of tea pots, cups and saucers. A rainbow of alcoholic cocktails flow from waitresses trays. So we head to the bar to ask for our 'sparkling water champagne'.and get a closer view of the Cat!

As the buzz of bloggers chatting fills the tree lined ballroom, smiling, I ask a gent standing by my side 

Where’s Alice! Has anyone seen Alice?...

I chat to some fellow bloggers but my trembling, tired legs mean I have to take a seat in the auditorium before the other revellers come through the door. Mr H follows waitresses and brings us palm sized bowls of hot food.

With everyone seated in the sparkling pink room Gemma Pearce the founder of the UK Blog Awards opens the event. 

My heart is thumping when the host, Vlogger Andy Samuels, announces the ten short listed Individual health Blogs….

The silent drum rolls in my head when the two Highly Commended blogs appear on the screen...

I turn and grin at Mr H as he wraps his arms around me. And the Urban Kultur Blogger and his brother sitting by our side say well done Dawn.

As soon as the Awards are complete I wander to the front to thank the Health judges; Kath Evans, Head of Patient Experience in NHS England and Children's Nurse and  Dinh Tu, Social Media Consultant for Bupa. 

I am thrilled with my Highly Commended Award and as we swap tales of our nursing experience Kath tweets a selfie of us both…

All the standing and adrenaline have drained my energy tank so Mr H and I leave soon after, clutching our gorgeous goodie bag which have been filled by the sponsors 

Back in our room at the Magical Montcalm we sip camomile tea as I tweet and text my Award to the world of waiting family and friends...

I want to thank each and every one of you for reading my blogs and for voting and helping me reach the short list for these Awards.


Congratulations to 
Nic's Nutrition the amazing Winner of the Individual Health Blogs and to 
Ceri Jones also awarded Highly Commended for her Health Blog Natural Kitchen Adventures 
Evidently Cochrane for Winner of the Company/Organisation Health Blog Award

Sunday, April 12, 2015

Shake, rattle and roll...

This morning Mr H was up when the birds started twittering. Like a dormouse I slept on, curled up under the covers. I woke when my burring alarm got too hard to ignore to find Mr H standing like a sentry by the side of the bed,

it's 9 o clock you need to take your tablets...

My two doses of epilepsy tablets must be taken twelve hours apart. A long lie in is no longer an option. I could of course have my Sunday morning tablets by the side of the bed but once awake this dormouse needs food...

Before 2008 the only pills I popped into my mouth were paracetamol and brufen to keep the constant headaches (and nausea), which I ignored far too long, at arms length.

Now I take a purple and 2 white ones each morning and a handful at night. When a new pill needs adding, like Tamoxifen for my breast cancer, I slip into fret mode.

I hate taking these I grumble to Mr H.

He calmly reminds me they are my tools for living...

Sunday is my tablet morning, like any creature of habit I need routine.

And like a Girl Guide I like to be prepared.

 As I eat my breakfast I cover the table in boxes to sort my weeks supply. I pop all my drugs out of their packets into my weekly pill box. Then twice each day it only takes a second to tip my morning then evening allocation into my palm and swallow. My tablets control my health conditions. I control my tablets...

If I am going out in an evening I decant my epilepsy tablets into my precious pill tin, which once belonged to my dear friend Jon and is a treasured gift from Jacky his Mum. I then set a reminder alarm on my phone and like Cinderella, I take them before I turn into a midnight pumpkin...

Want to know more about how your body deals with drugs? Click Here A Medicines Life Inside the Body - National Institute of General Medical Sciences.

Or on the Effects of Epilepsy on a Body? - HealthLine

Tuesday, March 31, 2015

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 18th 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

Wednesday, March 11, 2015

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

Friday, March 6, 2015

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

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. 

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 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...

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?

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