Friday, June 19, 2015

Things that go bump in the day...

In April I wrote about the Water of Life because I have been drinking enough water to fill a reservoir. The oncologists and nurses said water will flush out the toxins and help with fatigue. So as each wave of fatigue crashed into my day I drank another glass,

But as spring opened its doors the bite of fatigue got sharper each day.  After my shower I had to lie on the bed. Downstairs for breakfast, I felt dizzy as I emptied cereal into my bowl…

I feel awful, keep falling over and I am having seizures again  I tell my neurosurgeon when I see him in March for my 7th annual brain scan results.  

Well there is no change in your scan he says and the ventricles are the normal size so no sign of hydrocephalus either.

But at home when I try to hurry to reach the ringing phone, my feet end up in a knot and  I launch myself across the room like a cannon ball. My head breaks the fall as it smashes into a table…I sit up with a groan as blood trickles down my face and onto my arm…





After a three hour wheelchair wait in Accident and Emergency It is too late to stitch my head wound so I am pushed to a ward. Too ill to go home. 






The cause of my fatigue, wobbling Weeble-ness and falls is Hyponatraemia - a dangerously low sodium level in my blood. The cause of this low sodium is a side effect of one of my epilepsy drugs Eslicarbazepine (also occurs with Carbamazepine).  

My epilepsy consultant explains…by drinking a lot of water you have been making the (until now unknown to me) side effect much worse. 

I have over diluted the small amount of sodium still in my blood.  I am intoxicated with water!!

So now I have to count my cups of coffee, camomile tea and glasses of water. A total of 1500mls per day is all I can have.

After a couple of days of  one legged foot stamping tantrums and rants...the rewards of less water flow in…my Weeble-ness is less wobbly. I am hitting the floor less often and my seizures have stopped again - for now. 

So on holiday I hide the scar under my growing fringe and allow myself an extra Banaberry crush mocktail ...


Monday, June 1, 2015

Red

I want to buy you that heart Mr H says with a tinkle in his eye as he points to a crystal pendant in a shop window in the pretty streets of Stockholm Old Town




So with a giggling grin smeared across my face we step inside.





Mr H points it out to the Swedish lady. She fetches it from the window display and holds it out to me. But with only a glimpse I back away from the counter...shaking my head...unable to speak.

As waves of nausea crash inside my stomach I stutter I can't have it...

I swipe at the stream of unexpected tears as they drip onto my blouse. 

Concern is etched into Mr H eyes. 

Chemo is all I can say. 

Chemotherapy drug I gasp.

Red. 

Red in crystal. Looks like Red in plastic.

The lady immediately moves the pendant out of sight and gently puts her hand on my shoulder. I understand she kindly says, concern glowing in her eyes now too.

I never thought Mr H says as we leave the shop. 


Where did that come from I say, shaking my head. I thought I had locked that memory away forever.



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.

THANK YOU!



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...


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