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23rd May 2014 – Despair

Escape the thought of death for a couple of hours.

To go to work

Need to present at a special meeting.

Pretend all is ok.

But it’s not.

Meanwhile back at home

Seth waits for a phone call.

He is not alone he is with my auntie Margaret they’re both.

Waiting waiting waiting

To hear from the multidisciplinary team

To see if maybe there’s hope of palliative chemo.

No call came.

Chasing chasing chasing

When I got home Seth said

“Well, my life is worthless if they can’t even be bothered to make an appointment what’s what’s the point of trying.”

I didn’t say it.

But my honest answer was I don’t know.

Despair sheer unadulterated despair.

 

21st May 2014 – Shattered Hope

To die at home

It sounds so simple.

Its where anyone would want to die.

Referral to the hospice

The good old Dougie Mac

The phone rings its them

They are our hope when our hope is dashed.

All hope is diminished, shattered, faded … almost gone.

One last hope to die at home.

Will this hope be realised … I hope so.

 

20th May 2014 – Everything looks the same but is different.

Back at home

Where we belong

Everything looks the same.

But its not

Its broken, tarnished, violated.

Our life is destroyed.

We are “making the best of a bad job”.

The chair looks the same.

But is it extraordinarily uncomfortable?

The television is on but neither of us has the energy to watch it.

The food is cooked but neither of us want to it eat it.

Even a cup of tea doesn’t work its magic,

 

Everything looks the same but is different.

 

19th May 2014 – All the D’s

Drain removed.

Discharge imminent.

Desire to die at home.

Discussed his funeral.

Designated the music.

Definite treatment plan

Deadline Friday after MDT

Death at home

Die at home.

Deceased at home.

Discharged home.

Done and dusted.

 

18th May 2014 – Selfless

23 today happy birthday,

A young man with his life ahead of him

Full of promise, full of vibrancy, od unrealised potential,

Our nephew Tom

One last birthday without the burden of another death  

Selfless

For 4 days a secret no sharing the dark deadly knowledge

No one else must know until Tom has had his birthday.

Selfless

A man who is kind and compassionate

Knowing he could do something to lessen the suffering of another.

Of someone he loved dearly

With days to live you might think self would be the centre

But no others are the focus.

Selfless

A message on the phone his work supervisor

Her gran has died.

“Les you must get a condolence card to send to Emma.

Her Gran reared her she will be distraught “

A condolence card from a dying man

Selfless

He ran the lottery with a deep seated hope that the day would come.

The jackpot you have to be in it to win it.

But there is no winning for Seth now or in the future.

“Les, you must get in touch with work so I can give them their share of the current winnings”.

Hand over the future potential for others to win.

Selfless

A pile of cards, dictated to each person.

A personal note a sad goodbye

Money in each envelope

A share in the current

No future for Seth

Selfless

 

17th May 2014 – In Plain Sight

Pushing a wheelchair not what I had expected to do a week ago,

Can’t push too far can’t go too far,

Limited by medical interventions limited by an insidious and deadly cancer.

 Cancer hidden in plain sight.

Standing outside behind Seth pushing his wheelchair into the sunshine

The sun is warm, inviting, burning my face.

A face already stinging from the tears that fall silently.

Tears hidden in full sight.

Can’t let Seth know I am crying.

But I stand in the sunshine behind him weeping involuntary tears.

No effort they just fall but

With some effort incredible effort, I have to stop them.

I emerge from behind the wheelchair.

Tearless and smile at the man I love.

Love not at all hidden but overt present.

Love for all to see in plain sight.

 

16th May 2014 – Powerlessness

The ground now has a flex to it.

It bounces characteristically unnerving.

Sometimes a deep unending dip

Long and airless suspended in darkness.

The flex is low a more subdued uneven

An ominous level

 

I find myself retching into the toilet.

Unable to vomit.

Just retching in disbelief and shock

My stomach is like the ground.

Uncertain, uneven’ unable to sustain food.

Knotted painful; only able to tolerate sips of tea.

I whole cup is too much.

 

The ground, the food the normality is gone,

Suspended in deep dark stomach and heart wrenching agony.

The agony of realised impermanence

The agony of surrender

The agony of powerlessness

 

15th May 2014 -​ Drained

Drain inserted.

Better breathing

Able to move.

Three days 10 litres

Ascites

Gone for a while.

But given the fluidity.

We know it will be back.

Sinister indicating advancement.

Building up like a crescendo

A clear sign of the menace of imminent death

 

14th May 2014 – Irony

Moved out of his single room.

It was needed for someone who was dying.

Its just the irony

 

So intense in a shared space

Especially for such a private man

He withdrew.

 

Who wouldn’t? given the news?

Told you are dying.

Then thrust into a six bedded ward.

 

Others given similar news … death approaches.

Some with the option of treatment … hope pervades.

Another irony not lost on us.

 

13th May 2014 – Worlds Falls Apart

How do you describe the day that your world falls apart.

It’s the day that we all want to avoid,

The day when you or your close family member is told you have incurable cancer.

At that moment your life flashes before you,

You feel physically sick, and you don’t want to believe what you know is true.

You watch your beloved Seth be as vulnerable as anyone can.

You hear him thank you for the life and the time that you have spent together.

You hear him ask you to promise to make the most of your life when you are without him.

You see true love in that face, along with admiration and warmth in those words.

You reminisce about times gone by and mourn the time and trips you know that.

you won’t be able to take.

You vow that you will both be honest with each other and commit that the love.

you show each other each day will continue throughout your limited time.

together.

You hug, you cry, you deny, you ache, you comfort,

You support and commit to facing the future together.

 You vow that the only thing that is important is the quality of your time together.

You walk away with your whole world ripped apart.

You feel the depth of the sheer despair and the aching unbearable pain of losing your whole world.

You scream,

You howl,

You sob,

You weep,

You grieve,

You are angry,

You are grateful.

but most of all you are frightened.

 

12th May 2014 – Work Ethic Wins

Work ethic wins.

Emergency appointment 4.30pm

Straight to A and E do pass go do not collect £200.

X ray;  blood test

What will they say?

 

Train at top speed

Phone no answer.

Text no answer.

Facebook no answer

Landline no answer

 

Discovery made A and E is the place.

Sitting and waiting

They bring me an old lady on a trolley.

Oh no your husband was moved.

He’s in surgical assessment.

 

Pain intense

Distention altering reality.

Scan tomorrow.

A scan that will determine future destination.

The unmasking of what lurks behind the distention.

 

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