Tuesday, 27 July 2010

CONTAMINATED

Cruel, blood bourne virus
What did they do to deserve you?
Which batches of life saving treatment
Concealed you, left you waiting
To cause your devastation
For years and years and years?

Like characters on a stage
The infected ones play their part
In this real-life tragedy.
Life, death, love, suffering
Is their plot; performance not rehearsed
But delivered with anger and passion.

No producers here; the cast
Of thousands, self-selected, whittled down
To those with energy and drive.
Scene shifters, lighting and stage crew 
Keep this show on the road.
Masking grease paint conceals the hurt.

Already numbed by disease
Each waits to speak their lines.
No first night nerves as they plead
For help to make their lives bearable.
Contamination tortures their minds
As well as their bodies.

Dave calls for justice,
Through letters, emails, talks;
Peter challenges through court;
If his legal aid stops, his case
May be dismissed; already cloaked
In anger, they fight on.

Paul's health brings him close to death,
His chance of life a liver transplant.
Fred waits with him, friendly, supportive,
Although a fellow sufferer, he drives Paul
Ninety miles to hospital.
Life must go on.

Widowed Maureen mourns
Her husband's tragic death,
Remortgages the house for income.
Ros, fatigued and aching from her
Bone-rotting treatment
Waits to find active life again.

Simon speaks of stigma
Suffered by his family.
Cheerfully he continues, with David,
To follow up, research any avenue
Which may open, shed new light 
On this complicated drama.

Their performance fall on deaf ears;
The ever-changing bureaucratic audience
In the best paid seats, listen
Fall asleep, bored by this tangled plot
Of anger and emotion,
Difficulty and hardship.

The players in turn re-think, rehearse,
Soliloquies become entreaties:-
"Won't someone listen, please?
We may be amateurs but
Is our performance not worthy?
Does no-one understand?"

Mouse-Trap like, this show runs and runs.
Never a best seller, the dedicated actors
Replace those dying, as the years
Roll by in agony.
Within a waiting audience a few
Applaud their efforts.

The somnolent bureaucrats slowly wake,
Not altogether ignorant of the facts;
The players wait to hear reaction,
Hoping for a final performance
Of the wrong that can never be righted.
This injustice must be recognised.

And I, like the prompt, sit in the wings
Night after night
Listening to every word,
Waiting expectantly for the final curtain,
The thunderous applause of justice
In recognition of this long running show.




Juliet Batten                   July 2010
Some names have been changed, some are who they are...

Monday, 19 July 2010

Blood Sweat and Tyres 2010

'Blood, Sweat & Tyres’ was started in 2005 and is off-road mountain-biking dedicated to raising money and awareness for 'The Haemophilia Society'. 

Trails are selected to be physically demanding in order to be worthy of sponsorship, but with the objective of giving both an extremely enjoyable and rewarding experience for the riders.

The Haemophilia Society was established in 1950 and is the national charity in the UK of and for people with Haemophilia, von Willebrand's and related bleeding disorders. It has over 4,000 members and a network of 16 local groups throughout the UK. It provides information, advice and support services and advocates; and campaigns to secure the best possible care and treatment.

For more information please visit the official Haemophilia Society web site at:






The details for this year's ride are as follows:

2010 - South Downs Way 

This year BST regular Raj Patel is organising a ride along the South Downs Way - 100 miles from Winchester to Eastbourne over the weekend of 7th & 8th August 2010.










Raj is looking for riders to join him, Mike (another BST regular) and Dan and raise more money for The Haemophilia Society.

Any volunteers??

More details can be found on the Blood Sweat and Tyres website:  

Blood Sweat and Tyres 2010

If you'd like to sponsor the riders the official just giving page can be found here:

JustGiving - South Downs

It's a very worthy cause....

Monday, 5 July 2010

Contaminated Blood Demonstration 30-06-2010

This week I attended the Contaminated Blood demonstration in London.  This is my account of the event:

Karen and I and wheely bags.
Train from Kiddy
pork pie and sandwiches.
Change at Smethick
Disappearing train
What the... where d'it go??
Next one appears
Will we make connection?
Two minutes to spare,
cross platform onto London train.
Phew.
Oh no.
Fatality on the line.
Diversion via Stafford
north to go south.
Educate woman on train
She wishes us luck.
Late arrival.
Tube across London
meet Cheryl
bus to Southfields
meal.
Exhaustion.

Up and out
Sun is bright and we are early.
Good journey in
Meet mum and dad at cafe.
Walk to Trafalgar Square
see ship in a bottle on a plinth.
Seemingly hundreds of people
reporters
cameras
busy organised activity.
Donning t-shirts
erecting banners
distributing placards
and we're off...


Snake way down street
get attention from some
Blatant ignore-ance from others.
Walk, limp, wheel.
Hand out leaflets
explaining our cause.
Meet new campaigners,
catch up with friends,
remember too many now gone.



Congregate outside Downing Street
leave room for people to pass.
Would you like a leaflet?
Mostly taken.
Some don't look us in the eye
and walk on -
silence is violence.
Policeman doesn't move us on,
he has haemophiliac son.

Small delegation to number 10
led by Lord Morris
hand in letters and a wreath
representing those we've lost to contaminated blood.
Photos taken
interviews given.


Back on the street
on to the Houses of Parliament.
Problems getting in.
No t-shirts
No banners
No placards
No leaflets
Not allowed.
Remove t-shirts,
put placards and banners in ring-fenced pen,
leaflets stuffed in bag.
Why-ever is this necessary?

Queue in heat
hot
thirsty
tired.
Through security,
very late for meeting
rush to room 4a.
Lord Morris still speaking,
heads popping in and out
"We have booked this room".
Need us out,
Still ours right now.
"Proportion of those infected
who've since died
greater than that of Black Death."
This is our Red Death. 
And still no justice.

Must leave room
mill around in corridor
try to ascertain plan for the rest of the day.
Arrange to meet MP in central lobby
make way there,
wait.
Lots of us
waiting.

MP comes.
Introduce mum, dad and Karen.
He offers tour,
is this time waster?
Seems not, so we accept.
Through into House of Lords
red, ornate, grandeur,
round to terrace on Thames
back into House of Commons
masses of records
floor to ceiling
past library
round back of speakers chair
gargantuan statues of previous PM's.
Good god!
Maggie quite horrific.

Onwards under Bridge Street
through tunnel, like tube station
I say,
and there it is
MP's own private entrance to tube.
Up and out into Portcullis House,
cost millions to build, apparently.



Tea and business.
Explain our situation
stress how long we've been battling governments
and losing friends.
Show him letters
articles written over the years.

He asks what we actually want,
specifics.
Talk about money
on-going support and lump payments,
input into future treatment decisions,
everything in Lord Morris's Bill.
Will he support EDM?
No.
They are government graffiti.
What will he do??
Stresses his support of our campaign,
will attempt to get written question,
asking government to clarify their position.
I will send him the bill and David Cameron's letter.
Mum's a cynic.
Understandably.
I feel quietly optimistic.
I think...

We leave.
Search out others.
Share experiences,
pints,
support.


So much more to do.


Tuesday, 29 June 2010

Friday, 18 June 2010

Joking apart ...

People tell me I have a positive outlook on life.  During my life I've been told this a fair few times.  I usually think nothing of it and thank them.  Recently, however, I've begun to question myself.  Do I??

I decided long ago never to walk in anyone's shadow.  Actually that was Whitney not me, it ain't a bad philosophy but it ain't mine.  My decision was to follow Eric and Ernie in thinking there should be more happiness in this world.  To apply Brian's philosophy to look for the glint of hope in even the biggest piece of poo that life deals us.  Thus I've tried to face most challenges with a smile and used my sense of humour to distract myself from difficulties.

Recently I find myself wondering if the sh*t really is just that - sh*t.  And mebbe I've known that all along.  Have I just been kidding myself??  Is my positivity a sham?  A facade?  Am I actually full of sh*t??

Maybe hearing people say too often - it's amazing how positive you are - begs the question, why the hell am I?  And then, in fact ... am I?  Or is it a discipline I've adopted for so long I'm smothered in layers and layers of positive attitude and unable to see the real Ros, whoever and whatever she may be?  Whatever and however she may feel.

Maybe upbeat-ism it is my shield of steel?  Maybe I wear my carefree cape for protection?  To protect me from delving deep into my deepest darkest innermost feelings??  Where reality could be pain and disappointment and gut wrenching inadequacies.  To protect me from honesty?  Or to protect others perhaps?  From having to hear about it.  From perhaps feeling pity, or sympathy, or guilt, or disgust?  Not feelings I'd want to engender in anyone.  I don't want that.  Not any more.

Perhaps I actually am this damn perky?  Perhaps I do laugh out loud in the supermarket, sing when I feel lonely and smile in the dark.  Maybe my antidote to the less fun stuff is positivity and hope?  What's wrong with that?  Is that not the best way to be?

Always looking on the bright side can be tricky when it's raining on the inside.

Should I turn my face towards the rain?  Seek out and face my truth?  Or turn away, put on that brave face, and smile ...



Tuesday, 15 June 2010

I Am In Pain - so there!

I have had some good news today.

Well, not exactly good news but I'm pleased nonetheless.

I was referred for an M.R.I. on my ankle last time I saw my haemophilia specialist.  This may sound extreme but other than a cursory play with my foot whenever I saw him, and sometimes not even that, I had begun to feel that my ankle was not getting the attention it deserved.



As a bleeder with a tendancy for joint bleeds, I felt that a wiggle of the joint and an "Oh that doesn't feel too bad - you've got a pretty good range of movement in that joint" wasn't quite good enough.  

I am lucky enough to only have one really problematic joint but my scrawny little ankle clicks, grinds and hurts in such a way it would make a torturer proud.  It has kept me awake on numerous occasions, such that if I'd had a hacksaw under my pillow I'd have been inclined to hack off my own foot - seriously, I would've, had it not been for the likelihood of a monster haemorrhage of course.  It often 'disappears'.  Surely, you query, that's the effect I was after?  Nope.  When my ankle 'disappears' as I describe it, it becomes in an instant so weak it can no longer support me, it suddenly hurts like someone has shot a bullet right through it, and I fall over - if I don't catch myself first.  Oh, and I usually shriek.  And I'm not prone to that.

Yup, doc, it's not too bad.

According to the new GIGTB leaflet produced by the Haemophilia society, the content of which I believe has been taken from the national service spec for haemophilia care (please do correct me if I've got that wrong), as a severe bleeder:

"You should also be offered an assessment
by a specialist orthopaedic surgeon or
rheumatologist at least once a year to
monitor joint and muscle problems and
identify the need for surgical intervention."

This is not a service I have ever had whilst under any comprehensive care centre.  And I'm 36 you know.  

Maybe it's just an ideal rather than a reality - I note the use of the word "should".  Maybe I just didn't complain enough about the pain I was in.  I believe that most bleeders (yes, men and women) have very high pain thresholds, otherwise we'd be in pieces all the time and you'd never hear the end of it.  I also am not the kind of person who complains - at least I don't think I am.  I will generally only bring something up if it is a real problem but if I'm then told - oh no, this seems fine, I have a tendency to put up and shut up.  Perhaps I should've pushed for further investigation earlier but to be fair I trusted the doctor -haha, hahahahaa, god you think I'd have learned by now - and was unaware what care should have been available to me.  We've never had a physio attached to our Comprehensive Care Centre and I've never seen the national service specification or the NICE guidelines.
Anyhow, during my last visit my haemophilia specialist said, as he held my right ankle in his hand, 
"Have you had an M.R.I. done on it recently?"
One jaw bleed later, I said, 
"...um, I've never had one".
And so I was referred.

To Selly Oak I went for a half hour session in a tubular machine that was either having the time of its life or heading for a severe mechanical breakdown.  I quite enjoyed it.  It was kind of musical, in a tone deaf tuneless kind of way.  My favourite part was when the operator popped some headphones over my ears and said - "That's for the music".  They remained silent until she said through them, 30 minutes later, 
"All done."

Two weeks later I've just phoned the hospital to see if they've got the results, and yes, they're in....

*Lights dimmed*

*Drum roll*

*Gratuitous lengthy relentless seemingly unending dramatic paaaaaaauuuuuse*

"Congratulations Mrs Cooper, you have won severe arthropathy of the right side of your ankle joint!!"

Have to admit my nurse didn't quite put it like that, but the good news was no tendon damage and the left side of my ankle didn't look too bad.  

The fact that the right side is so damaged makes me feel better - is that weird??  It basically means that all this pain and discomfort and weakness and crunching is not all in my head.  Why I would think it was, god knows, but hey it ain't, so that's good.  It explains things for me and means that finally summat can be done to make it better - or at least perhaps a tad less impactive on my life. 

I await the next step, with one good and one validated weak ankle ...


Thursday, 27 May 2010

You were only waiting for an angel from above

The sun was out and so were we.
The conversation meandered past my ears.
Amidst the children's shouts arose another sound.
Gradually we stopped and listened.
As we silenced, he crescendo-ed.
We sought him out and his voice drew the eye.

Perched on the conifer top.
Basking his bright beak in the sun.
He sang from the depth of his tiny body.
Performing his aria for our audience.
His voice leapt from his yellow beak
and took flight towards our ears.

It soared and dropped
And twisted fro and to.
Encompassing his passion and joy.
He knew every note on every stave.
He shared them all with us.
We were in awe. It was beautiful.

The next day the black flutter caught my eye.
I went to see what I thought I knew.
He lay quiet and still in the road.
Eyes open yet opaque, beak bright but closed.
It may have been the loss of a friend
but I cried for the little soul.

Now that his song had gone.