Monday, April 25, 2016

Toy soldiers...

i am frightened of kerbs I tell my friend Helen when we meet for lunch...

Yesterday I walked back from the bus stop in a step, leg-lift, head down kind of way to avoid a trip on the rippled pavements...

I come to a corner without a dropped kerb, (a lowered section to allow mobility scooters, pushchairs and people like me to cross). I stand and stare at it. Whisper to myself you can do this...

I hesitate and gaze at the kerb edge intently. Just step off I say to myself...

I shuffle my feet to the edge. The road seems so far away; like I am about to jump off a cliff and crash into the dark wild sea.

I stand for a few minutes then turn around and walk back the way I came. Take a running jump at it my inner voice tells me...

I walk towards the kerb 'at speed' as I try not to think about the challenge that looms ahead.. 

But at the kerb my heart drops down to my stomach and I come to a lurching stop. I look up and down the road to check that no one is watching this foot shuffling, hesitant kerb stepper.

Then I walk back again...

As I head towards the kerb for the third time I try not to think about it, la la la. Just step down it's easy I tell myself as the kerb silently taunts me...

But once again my feet come to a halt . 

I look right and left. No one watching. 

Then I lower my stick into the road. Lean on it with my frightened right hand and arm. Take a deep breath then launch my left leg into the air. It lands in the road. I pull my right one after it. I am down. Shaking but down. 

One last furtive glance around and with tears in my eyes I walk the short distance home.

On Friday, at my first one to one Pilates session for 18 months, I tell Sue that I am frightened of kerbs. I need help with my balance again I say as fresh tears drip off my nose...

Ok let's start at the beginning she says. Do you remember the toy soldier?...


Obstacles don't have to stop you.
If you run into a wall (or kerb) don't turn around and give up,
Figure out how to climb it, go through it, or work around it.

Michael Jordan

Tuesday, April 5, 2016

Call the fire brigade

I can’t do it I squeal as I look up into Mr H’s frowning face, my hiccupped laugh threatening to turn into a wail of despair.

I'm stuck. Not going anywhere. Get me a pillow

There must be a way he says as I sit there shivering…

We’ve tried everything I mutter. I am getting tired. Give me a minute and I’ll try again.

Try turning round Mr H suggests…

I would then I could pull myself up onto my knees but I don’t have the room to turn in here.  I tap the metal white sides which hold me prisoner.

Why did I suggest this I weakly grumble as I grab hold of the taps and try once again to heave my, now almost dry body up…

But I only manage a few inches before my feet once again slide away from me despite Mr H attempting to hold them still with his glue like grip…

I don’t know what else to suggest he says as he paces back and forwards wringing his hands…

Call the fire brigade I say trying hard not to laugh knowing a spurt of mirth will quickly turn into tears. Can you imagine it we giggle; 

dring dring, fire brigade please
I am a naked lady stuck in the bath. I can’t stand to get out. My legs and arms are floppily fatigued...

What about putting your trainers on?

It’s worth a go I say as, like a fire hose, I spray clean water around my naked body. Trying to remove any soapy residue to stop my feet from slithering and slipping like I am trying to stand on an ice skating rink despite the bath mat…

I huff and puff as I dry my feet and ram my blue and white trainers on.

Deep breath, another snigger, then heave ho. My arms shake.My right leg quivers as my left leg goes uselessly rigid. Mr H puts all his weight onto my feet to stop them running anywhere.

I am back on my bath seat. Forty minutes after I emptied the bath water, I am out. Exhausted.

Bad idea I mutter to myself.

Never again.

Thursday, March 10, 2016

Grey day but the sun is shining

At choir we sing...

...its a greeeey day, grey day and the sun is shining, greeeey day but the suns gonna shine on everyone 

and my spirits ease themselves out of the murky mist they have been in for the last few days...

But as we walk out of choir, my eyes fill with tears when Julie says 

well it's the weekend. The one we dread...

Oh my goodness you get it and I didn't say a word, I exclaim as we pass an understanding hand over each others shoulders

The wave of grief, loss and what might have been, has been building inside my gut for a while. When I stop at the card shop to buy a Mothers day card for my Mum; with love from your daughter, with love from your Son glare back at me. Taunt me. 

I hate myself for dreading it.  I still have a Mum but I walked around yesterday with tears dripping off my nose and sniffed my way home on the bus I tell her

But its' pinkness permeates everything, flower shops are packed with flowers. In Tesco banners and bouquets announce the day. I want to scream what if I am not a Mum what about me. What if. What if. What if...

Plans are being made, lunches booked, I book one too for my Mum knowing that no one will ever need to book one for me...

Our conversation runs freely once the tap of emotion has been turned on. Maybe we should go abroad for a week we giggle, somewhere where Mothers day is not celebrated

I feel lighter now we are talking about it I say to Julie. We keep up the cover to make it easy for others but inside we are a turmoil of thoughts, sadness, longing  Julie adds through tears

...on our way back from taking my Mum out on Sunday I breathe a sigh of relief as I say to Mr H well thank goodness its Monday tomorrow. A new week...


A flower bloomed, already wilting, beginning its life with an early ending
R.J. Gonzales

Thursday, February 25, 2016

Two Little Words

As a child these two little words used to mean the bus conductor couldn't break into my 50p piece. Or the lady in the sweet shop needed to go to the bank. Or my Mum needed to raid the jam jar for my dinner money.

Then when I was working they meant a patients blood pressure was the same. Or a relatives loved one was still poorly. Or we were short staffed...

But today those two little words bring the sun from behind the clouds. They smear a smile onto my face. And they set me free to walk through the gate to the joyous days and months ahead... 


Seven and a bit years after [removal of] this blighter changed my life



The results of my brain scan show 

No Change!


Sunday, February 21, 2016

The King of Makaton

On holiday after a day lying in the sun Mr H ties his bow tie and I choose a cocktail dress from our overfull wardrobe. When we sit down in the bar for our pre dinner sparkling water champagne, I spot a young man snapping photographs around us. It looks like you are having fun I say and after a chat we invite them to join us. In that moment of serendipity we meet two exceptional people...

Chris tells us he teaches Makaton: a language programme using signs and symbols to help people to communicate

Oh I would like to learn I tell him...

Can you teach me No Cake I ask

Of course...take your main hand and hold it up like this




then sweep it to the side, that's No Chris grins


Then cup your hand and place it on top of your other like this

That's Cake

I practice No Cake You've got it Chris smiles

I keep doing it as I stare at Mr H and he throws his head back and laughs. I explain that I eat too much cake so now Mr H can silently try and stop me!





Chris teaches Makaton at Hallam University, he also teaches some of the Police officers where we live Nicky tells us, Chris is too modest to tell everyone but I am so proud of him...

Some people confuse it with British Sign Language (BSL) Nicky tells us as we sip our ice cold drinks, but it is different. More accessible. Simplified

Chris chips in to tell us a tale:
About three years ago I was teaching a group of senior nurses when two nursing Professors who were sat in the front row, started talking to each other. I stopped teaching and said excuse me, please listen, I am teaching you...

Wow well done, people talking used to drive me mad when I was teaching...What did they say?

They stared at the floor. They went red. Embarrassed. 

How long have you been signing Chris we ask

Mummy started using it when I was a baby and couldn't talk. It helped me to visualise words. She told me stories, signed books for me.

I love my Mummy Chris says with a sideward glance at his Mum, She encourages me but she's strict. I tell everyone I am so lucky to have her as my Mummy. She fights so hard for me, she's a lioness. When people stare at me she has taught me to ignore it, so that's what I do. Ignore them. 

He has had articles written about him Nicky tells us beaming, her eyes twinkling with love and pride. if you tap Chris Sampson Makaton into Google and you will find lots more... famous then I smile. Mr H says Chris you are The King of Makaton!

We meet each evening after that, eager to hear more, learn more from Chris and Nicky. 

One evening, Chris takes his ipod out of his pocket and shows us a video of him signing a rap which he did for a drama group audition; he was immediately accepted they tell us. He shows us a recording of him teaching Occupational Therapy Students at a Conference to sign a song from Glee...



Please teach me Don't Stop Believing ...

Take your main hand like this..
Thats Don't


Then Stop is like No


Point to your head like this for Believe

Then this is for ...ing!

Thats our Mantra in life Nicky tells us Don't Stop Believing... Mine too or Never Ever Give Up I say

You are an inspiration Chris, you both are. 



The best teachers 
Teach from the heart 
Not from a book

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