28th May 2014 – Silence
Silence….
Not something that usually fills our house.
It’s usually full of laughter, fun, chat, TV, music.
But today it is silent.
Silence that pervades the whole house
Silence that emanates from a chair in the study
A chair occupied by a man who is usually full of joy and vibrance.
But sadly, that all ebbed away 14 days ago
Now a shadow of that vibrancy he alone in a chair
Refusing to speak, barely able to open his eyes.
Both expend too much energy.
When just staying alive is a major feat
I keep popping in but no response, he wont even look at me.
Too traumatised to look at all he will lose.
Too traumatised to say the words that I know are true.
I love you and now more than ever I love you too.
27th May 2014 –
26th May 2014 – Obliterated
Felling a little better
Little nibbles of food
A few drinks
All stayed where they were supposed to be.
The tiniest most infinitesimal grain of hope
Dashed by the certainty of death.
Death punches you in the mouth
Then continues to assault you physically.
Just to make sure your grain of hope is obliterated.
25th May 2014 – Vicious Cycle of Tortuous Pain
Haloperidol the drug now familiar
Prescribed to help with nausea.
But all it does is send Seths to sleep #No conversation.
No interaction
Just the sounds of gentle breathing
Conscious that will soon stop
Then when he wakes up, he feels nauseous again.
A vicious cycle of nauseous pain
There is no relief.
24th May 2014 – Cuddles
Lying in bed
Can’t get close enough to cuddle.
Early morning
I feel the weight of Seths hand on my hip.
Heavy burdensome
His new cuddle
Real cuddles hurt too much.
I weep silently into the pillow.
Quietly so he can’t hear.
They are tears full of pain.
How can he possibly be dying?
But dying he is
I cant bear the thought of life without him.
But he will die.
I am powerless.
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.
22nd May 2014 – No Point
Quiet in the house
Nothing to say
There is nothing to say
Chopping up cubes of cheese
Mini cheddar’s
Apple chunks
A little bit of chocolate
Some peanuts
Lots of nibbles to nibble
But no nibbling takes place
Quiet is all there is
Too painful to eat no appetite
No point
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.
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –
27th May 2014 –