Thursday, November 19, 2015

Oh No Big Trouble!

I feel a bit out of sorts I tell Mom when we chat on the phone, it’s because I am increasing my epilepsy drugs. It’s always tough for the first few weeks

I don’t know how you cope with it all she replies…

Because I would rather be here, have a life and these symptoms, than not be here at all I chirpily tell her…

And I mean it. When ill health gate crashed my life and death stood at the end of my hospital bed I realised I wanted to live whatever the cost. As I recovered I swore I would make the most of what I was given.

Now like a child in a sweet shop I sample everything I fancy. When I got my first taste of the Voices Together Choir last December my heart pumped out pure joy. I had found a place where I could sing out emotion in words. A room full of warm smiling faces has now become a room full of warm smiling friends.

One of those friends is Julie who has her own story to tell. We have smiled and shed tears together as the parallel paths of our completely different journeys shine their lights on us…

When Julie shared a book with me in which she has written a chapter about her twin daughters Josephine and Francesca, I settled down one afternoon with a cup of tea…

As each story of children with life limiting conditions unfold, I read of struggles larger than most of us will ever encounter. The tug of war Mums and Dads endure to get the right care, information, equipment and support for their child. And for themselves. Parents tell of fast track training in complex medical and nursing skills and of outings which resemble a hospital on wheels But sooner or later grief weaves its way into their days, weeks and years…

But the pages are also full of a rainbow attitude to life. Stories of wonderful adventures make me smile as I turn each page. Tales of chocolate, jam sandwiches and cake loved by cheeky and lively children as they live hectic and happy days.  Lives full of giggles, trips to the seaside and Disney films. Lives revolving around the gift of beautiful children…

In their early years, Francesca and Josephine, with their dark hazelnut hair, were bundles of boundless energy. Mischievous Josephine’s giggle and cries of Oh no big trouble had them all grinning. While Francesca’s intense gaze made people feel she could see into their soul…

The girls changed our lives Julie often tells me and who knows where they will lead us in the future…

If you read this book you will find that the stories have one thing in common, the discovery that all we can ever be sure about is the moment we are living…Now. This minute…

I had never heard of Little Bridge House (a Children’s Hospice in Devon) or Jessie May (a Children’s Hospice at home in Bristol) until I met Julie and read the book. The proceeds from Lives Worth Living go to these two incredible charities which cradled these families and children as they helped to make their short lives worth living.

You can purchase the book directly from Southgate publishers by clicking here… Or if you are lucky enough to know Julie then ask her to sell you one…

Wednesday, October 14, 2015

#ShowYourStrap - The two B's in my life

When I opened the first email asking me to write a blog about the Breast Cancer Awareness #ShowYourStrap campaign, I closed the email with a snap. When the second request dropped into my inbox I skim read it as I tried to ignore my bubbling anger.

But as I clicked on a third email when it arrived this morning I asked myself why? Why this anger?

…Yes breast cancer stopped me in my tracks; I bear the scars of surgery, a chemo change in hair colour and style. The tiny tattoos remind me of radiotherapy exactly a year ago. Aha typing Radiotherapy brings the knot of anger to the surface … I found it upsetting, frightening to be left, half naked, alone on a table. Terrified the fear and anxiety would cause a seizure while no one could see me. I sobbed when I was asked a week later if all was OK. Only then did a radiotherapist tell me they could see me on a camera!

But it is over now and the breast cancer, discovered on my 50th birthday screening mammogram, is 90 odd percent cured, well so they tell me and I choose to believe it.

In comparison my brain tumour changed everything about my life, I am reminded of it as limp my way through every day. I am reminded of the damage it did every time I fall over or trip up. And again each time another seizure rolls in to spoil my day... 

But there is no cure for my brain tumour, paralysed leg and epilepsy….all that is on offer is life changing surgery then yearly scans. Just wait and hope... But I am lucky my tumour is low grade so it grows slowly...

With my anger out on the table I can now calmly ponder over the fact that it is because of cancer research which is partly funded by charities, and the subsequent development in breast cancer treatments, that I was able to be given those high odds of a cure. And without a mastectomy, just an incredibly painful boob reduction and reshape!

As many of you will know, women have an average of 1 in 8 chance of developing breast cancer sometime in their lives. But only women who are considered high risk because of a family history are entitled to additional check ups which may help them to reduce this risk.

So Marks and Spencer’s in collaboration with Breast Cancer Now, have created the Something Good customer initiative. The aim is to raise over £13 million which will help scientists develop a tool to calculate an individual woman’s risk of breast cancer. Many women would then be offered a tailored risk reduction programme in a bid to prevent 9000 cases of breast cancer by 2025.

To kick it off, a social media initiative #ShowYourStrap is being launched alongside a new range of vibrant pink lingerie including a post surgery bra. This initiative has angered some women affected by breast cancer and an alternative #ShowYourScar has been used. So here is mine...
Brain Tumour Scar with hair loss from Breast Cancer!!

If you want to  #ShowYourStrap or #ShowYourScar take a selfie like me and text SUPPORT to 70003 to donate £3 then nominate friends and family… I have done mine will you?

Back to my anger…over 9300 people are diagnosed with brain tumours each year. But there is still no cure and less than 2% of cancer research funds are spent on brain tumours. Just 19% of adults survive for five years after diagnosis; in comparison more than 78% of women with breast cancer survive for ten or more years.

So if you would like to give money to brain tumour research click here to donate to the Jon Fredrickson Fund in the The Brain Tumour Charity.

Monday, September 28, 2015

Cake could kill me...

I woke up one spring morning this year to discover someone had sewn a new layer of fat around my middle.

Who did this I shouted at Mr H as I grasped the roll between my fists in horror…was it you?

He giggled, put his arms around me and said I still love you, every bit of you Mrs H

Some people have told me that the Tamoxifen I am on, which blocks oestrogen receptors in breast cancer cells, will make me fat but not wanting to take their word for it I hit Google Scholar and do a bit of research...

The clinical papers I come across indicate that whilst some women do gain weight on this anti cancer treatment, statistically it does not appear to be the cause!

I blame it on Menopause! Chemotherapy has kicked me straight into menopause. My oestrogen levels have dropped. Excess fat is now being stored in my abdomen instead of elsewhere!

I need to get to grips with this roll of fat. Make it disappear I tell Mr H...

I am putting myself at risk because this extra weight gain significantly increases the risk of the breast cancer coming back!

 So I book an appointment with a dietician…sitting in front of her I clasp my hands around my new friendly fat roll and mutter where has this come from? I need to get rid of it. Send it back.

We talk about my diet. Since my breast cancer diagnosis I eat a diet full of organic fruit and vegetables. I cook everything from scratch…have ditched processed food I tell her.

But I can't resist cake and chocolate I slip in with a secret smile…

Exercise is key I subsequently learn on a Living Well with Cancer Day. Exercise until you feel breathless the lady tells us. I put my hand up

...but I walk and swim like a snail so how can I get breathless doing that I titter. Try something new, walk up hills, find something more difficult to do she replies.

So I buy a cross trainer and yes ten minutes make me puff and pant…

Now I record everything I eat on the MyFitnessPal app, struggle to keep to under 1200 calories…and try to do 30 minutes of exercise every day…


But most importantly I try and say NO when cake is on offer and turn my head the other way when Mr H mentions chocolate…

It is tough but I remind myself that going through a second round of breast cancer treatment would be tougher!!

 If I was made of cake I would eat myself before someone else could - Emma Donoghue

Sunday, September 13, 2015


I awake to a dusting of dew on the grass, the breeze nips my skin when I step outside and trailing leaves have turned a rusty red.


A time to start school; buy new notebooks for another nursing course or University module.  A time for new shoes and work Conferences.

My mind drifts back to September 2007, the year before my brain tumour set me on a different path...

I frown as I bite the end of my pen trying to summarise two years of my Masters Degree research into ten PowerPoint slides. I am to present a paper on my study of The Role of Audit and Surveillance Nurses.

Almost done I say to Mr H, when he asks how much longer before we eat dinner. At the mention of food I smile as I have happily vomited my way through August, survived on toasted tea bread and water for weeks, the only things I can keep down.

Whatever I eat for dinner, I will feed to the garden outside within half an hour anyway I say!

In the evening I lie on the sofa and with a grin devour every snippet of information in the magazines on my lap. I have never seen you look so happy Mr H grins.

At night I hug my tummy.

But at work I feel unwell so book an appointment. My tummy is scanned. 

I watch frowning faces. Bloods are taken…

At home the phone rings.

The bloods show you will loose the babies the doctor gently says. I curl up in a ball and Mr H and I howl like wounded animals.

To keep our hurting bodies and minds busy, I board the train to the Conference in Brighton. Mr H sets off for a meeting in London

Nothing we can do but wait…

I present my paper to a packed room. But the bleeding has started. Later sweating and shaky I lie alone on the floor in my room. The room sways, my head is as light as dust.

I reach up for my mobile and ring the one friend who knows…

The sound of running feet. The door bursts open. She calls 999…

I wake in recovery after emergency surgery as a nurse brings Mr H through the door.

She lost a lot of blood the surgeon tells him.

Now September is about our babies.

Only we remember. 

A flower bloomed, already wilting, beginning its life with an early ending 
RJ. Gonzales Mundahlia

Thursday, August 6, 2015

Where there's a will there is a way

On the TV programme Gardeners World this week, a lady, with numerous disabilities including blindness shared the joy of touching and smelling a tomato plant in her garden. As she inched her away among the plants stooped low over her stroller she told the viewers...You can tell if a tomato is ripe by touch, if it is hard it's not ripe, slightly soft and it is ready to pick...I am always tasting!

Her delight in the plants shone like the morning sun rising in the sky as she shared her garden with the viewers. It is my only private space she declared, people can only come in if I invite them. I have found that with all my difficulties I need to think tangentially she said 

Tangentially! A new word for me so I looked it up...well to be truthful I leaned across and asked Mr H, my ever present creative, think laterally he says. 

And my mind wanders back to my nurse training... I am working on an elderly care rehabilitation ward where laughter rings out all day as we help the patients get back onto their feet or find new ways to cope after fractured hips. The words of one such lady have stayed with me throughout my life...

Where there's a will there's a way she would say as she struggled to get up from her chair.

So I reflect on my life and my tangential approaches as I meet each day with a smile - well almost every day...! .

I now have rules: 
  • Every day is a best dress day - nothing lies unworn
  • When I feel well I say it out loud. Today I feel great. Today I am well.
  • I am kind to myself when I am energyless. I watch a DVD or read a book instead of beating myself over the head with a stick for being tired!
  • I only organise one thing a day. A visit from a friend blocks a day in my diary
  • I always use my Energometer to calculate whether I can do something extra or not
         Action + Time + Energy Needed
                  __________________                                      = Do, Delay or Don't Do

      Current Energy Reserves (Zero, Red, Amber, Green)

  • I have accepted that writing is my new career, it occupies my grey cells, keeps my fingers tapping and constantly brings new challenges. I no longer wish I was back nursing

  • I mediate or do a mindfulness activity most days, even if it is only watching a butterfly or my breath for a few minutes. It matters. It helps keep me calm.

  • And when my Gorgeous Sue comes down for the day, we snort and giggle as she tries to get me over a wall when faced with a locked, barbwired gate on a sunny short stroll...

 I may not be able to jump the hurdles in front of me 
but with the help of others I find the path (or wall)  around them...

Over and still in one piece! Just!

Friday, July 17, 2015

Love will see us through...

Before last December, less than a year ago,  I only sung in the house, or in church at weddings or carols at Christmas. But now singing is part of my life. 

I am in a choir I tell a friend when she asks what I am up to...

Wow I didn't know that  she says

I have always wanted to sing, always muttered about doing something about it but it took my recent Breast Cancer storm to push me through the door of one of  Liz Martin's amazing Choirs. 

Singing is like a medicine. A course of rehabilitation. A life line. I rarely stop grinning at choir unless I am wiping a tear from my eye,  moved by a song or words.

Last week as we sang Hold On. Love will see you through. tears ran down my cheeks as I struggled to gulp back a sob. 

My Mr H has held on, stuck with me. Our love for each other sees us through the roller coaster of our life. One day I will be able to sing Hold On without tears. Sometime. Some day.

On Sunday I joined in a day of singing to raise essential funds for Wotton Arts Centre, in St Kenelm a beautifully simple Georgian Church. Mr H took me and sat in the traditional pews to listen for the first time. The sound of our harmonious voices wafted around the terracotta walls and seeped into souls as we sang the day away

I had to look at the ceiling when we sang Hold On. One peek at Mr H's face and I would have been a sobbing, spluttering mess. He knew though that I sang the song to him.

Some of the songs made the hairs stand up on the back of my neck he said as we left.  I knew the choir would be good but not THAT good!

Music speaks what cannot be expressed
soothes the mind and gives it rest
heals the heart and makes it whole
flows from heaven to the soul

Why not make a cup of tea and enjoy listening to a recording of our concert in February...

Wednesday, July 8, 2015

Life is beautiful

Last week a friend asked  if I ever get bored. 


I am too busy living I said

Each morning as I wake I wrap my arms around myself and thank the Lord for I feel well. Really well, I am grinning with wellness. 

Yes I still trip when the slabs are uneven 
and often when they are not.
I  have to limit my drinks to six a day.
Be mindful to not let my energy dip too low
to let seizures take hold and
 cause an emotional crash...

But this summer I don't have to traipse to and from the oncology unit, have regular bloods taken, or avoid eating runny yolk eggs.

I welcome every second of this wellness, cramming as much in as my damaged body can deal with.

I am making the most of this pocket of time I tell my counsellor. I am at the top of the mountain and am camping here for as long as I can.  I am caring for me. 

This peace of mind has evaded me for so long as I have constantly searched for the old Dawn. Dawn the nurse. Dawn the leader. Dawn the walker and runner...

I have writing projects to keep my grey cells cranking. I can choose whether to commit the time. I had my first swimming lesson for nearly two years and have been encouraged to try Nordic walking at Penny Brohn Cancer Care. And once again I can potter at the allotment,

But quite often I am happy to just be. Grateful that I am here to enjoy this summer, my family, friends and life...

Just when the caterpillar 
thought the world was over,
It became a butterfly...

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


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 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.

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