Tuesday, February 9, 2016

Hope is like the Sun

A small cappuccino please I ask

Chocolate?

A cappuccino without chocolate is no cappuccino at all I say

I agree the dark haired young assistant says as he shakes the bean shaped powder over my frothy white drink.

I sit at the only empty table next to two doctors dressed in blue scrub suits, A&E I think, not theatre I hope - too much of an infection risk. As I settle into the hard brown chair and pull out my book they lower their voices and lean towards each other. I stare at the words on the page and try not to listen.

Mr H rings my mobile in reply to my text I am here

I am too busy to join you now he says apologetically, hesitatingly.

Its OK I tell him, I knew you would be swimming in post holiday work on your first day back. I am as calm as the Caribbean sea, sipping cappuccino and reading. My head is still on the ship I smile.

I lift my suntanned face from the pages and watch pale people being pushed in aqua green and white wheelchairs, people walking with crutches, others holding tightly gripped hands. A cleaner mops a patch of floor and leaves her mark, a yellow plastic pyramid warning Caution! I don't belong here any more my mind whispers to no one in particular...

I scan my appointment letter and I am back at the airport - Go to Gate 19 and wait the screen tells me. My flight into the MRI scanner is due to take off at 15.00hrs.

As I walk towards Gate 18 to catch a lift to 19 a butterfly knot of anxiety starts to tangle tightly below my ribs. I breathe in and out slowly as I wait for my scan. My annual confirmation that I still have an almost tumour free brain.

I hope

Hope is like the sun, which,
as we journey toward it, 
casts the shadow of our burden behind us.
Samuel Smiles



Monday, January 18, 2016

Feeling Guilty

When I visited the oncology centre for my breast cancer treatment I talked to Rachael, one of the ladies in the information and support centre. We chatted, well I chatted Rachael calmly listened. And listened, to my tearful traumas as they spilled from my trembling lips. I also told her about my blog. On my next visit, when I was sifting through the racks of information leaflets, Rachael caught up with me to tell me how much she was enjoying reading my blog posts...

I love your honesty she told me, do you mind if I tell other patients about it

Thats what it's there for I told her. On a subsequent she asked me if I would be interested in writing an article for their patients magazine Voice. 


Since then I have written three articles for the magazine, sharing my thoughts on Cancer from a patients perspective.







The latest article to be published about Guilt has been bubbling in my heart and head for quite some time and I wanted to share it with you too...

Stomach churning guilt crept silently up on me after a Meningioma brain tumour shredded my life.  Guilt stopped me asking for help when depression clouded my world. Guilt forced a smile onto my face when inside I was weeping.

Why am I feeling like this I eventually asked a counsellor, two years later? I’m alive. One of the lucky ones. My brain tumour is low grade. I sobbed.

I feel guilty when I wish for more information. More support. Guilty for asking for it,

I should be coping I said.

I have even silently wished my tumour was malignant so that I could get the support I desperately want. How terrible is that  I ask her with tears dripping off my cheeks.

You are experiencing a deep sense of guilt often felt by people who have survived a traumatic event when others did not – or may not, she gently said.  Yes you are alive but the tumour has changed everything about your life. Everything.

After that conversation I joined a support group led by Brain Tumour Support and was made welcome regardless of my tumour type. And counselling carried me back to a healthy mind. I just wish I had been offered support at the beginning…

Last year as the radiology consultant said Dawn you have breast cancer, support and information were wrapped around me, woven into my care!  So no need to feel guilty this time.

But I do.

Guilt has been following me around. It peeps over my shoulder whenever I think I have shaken it off.

Why I ask it?

You should be organising a fundraising event for brain tumour and cancer research, writing more articles, doing all the interviews people ask you to do Guilt whispers.

But what you don’t realise Guilt I grin, is that I have learnt that negative thoughts are just that …thoughts

So this time Guilt, I shall acknowledge you then turn my back and walk away…

I am writing…doing the things that feel right...



Wednesday, December 23, 2015

My Christmas letter

Hello there

If you have been following my blog you will most certainly be aware that 2014 started for Mr H and I with a new kitchen and a diagnosis of breast cancer!

We surfed the huge waves of surgery, stomach churning chemotherapy and finally radiotherapy with the support and love of friends and family. We popped out the other side of treatment just before Christmas.  Last week I had my first, post cancer, nail biting annual mammogram. Apart from the obvious changes that surgery left in its wake, everything else was normal. Yes NORMAL!

So now when people ask me what my breast cancer prognosis is, I happily tell them that I am like a piece of ham, cured!

In 2015 I made sure the pendulum swung towards fun. I filled it with holidays, giggles, singing and hair cuts...

I now have a chemo induced grey and black change in hairstyle and I love it. Mom said I was born with black curls so clearly I have regressed!! No one recognises me anymore!


Writing and researching have become my new world. I am now working on a historical project relating to the Quakers and the Midland Adult School Union…



My brain tumour changed my life but breast cancer has given me a new perspective. I have learnt the value of Meditation in keeping stress levels low. I hang onto a calm mind and enjoy what I have more than ever.  I try to exercise more and our eating is the healthiest it has ever been but weight loss eludes me for now...

Mr H and I are looking forward to seeing what 2016 dishes up 

I wish you a happy Christmas and a healthy 2016
  


Love Dawn xxx

Sunday, December 20, 2015

Walking in the road...


I close the front door, crunch across our stone path then clutch my green handrail as I step down into the grey tarmacked road. Today my mindful walk is to the chemist to collect a prescription. At this time of year my attention is normally drawn to the orange, red and gold leaves still hanging onto almost bare branches. I usually stop in awe as I pass another crop of summer bright orange or Christmas red berries.


But today my head is dipped. I stare at the ground in front of my shuffling feet. Every crack, every hole, every ridge is waiting to trip me up. Make me fall. Or tumble. Each time it happens I leave a bit more of my walking confidence on the ground. Something else to trip over next time I am out!





As I gaze at the ground I see the cake crumbled grey stones which once resembled Tarmac. 








The rail road ridges caused by workmen digging channel tunnels into paths, then roughly filling them in without a thought for the pavement shufflers such as me.








My heart leaps over the hedge when my walking stick shoots away from my feet on the autumn leaf skating rink...






So I step out into the road.

My shuffling strides become lighter. My pounding heart plays a slower tune and at last I can lift my eyes from my feet.

I walk in the smooth gutter to stay near to the kerb in case a car dares to drive too close to this road walker. I would like to say "then I can hop onto the pavement". But getting from road to pavement is a precise four step procedure:

Step 1 hesitate then turn to face the kerb so my back is to the cars queuing to run me over...
Step 2 choose a foot to lift onto the kerb then lift as I lean heavily on my walking stick 
Step 3 (assuming I reached the target with step 2) lift the other foot onto the same patch of pavement
Step 4 step sideways to face the way I want to walk...

My knees are bruised and scabby, like a sock wearing school girl after a few tumbles in the playground I giggle to Julie when I tell her about my recent falls. I shall buy you some Barbie knee pads for Christmas she titters...

Dear Santa 

Last year the council resurfaced many of the roads which I walk on. I expect this is because they don't want cars and their drivers car-tripping into potholes.

This year please can you make the pavements as smooth as the roads. 

Thank you

Love Dawn


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

September

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.

September

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 dictionary...be 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!


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