Tonight  I wanted to write a post about human strength and positivity of mind.  I wanted to share a tale of support and love.  A tale of conquering the greatest challenges in life.  I wanted to share my inner thoughts to inspire and be uplifting.

Tonight I didn’t want to write about pain and sadness.  I didn’t want to sound weak and pathetic.  I didn’t want to disappoint.  But this blog is my journal. It is my way of dealing with my journey.  It is my way of dealing with my emotions.  And tonight all I have are my raw emotions.  All I have are my raw feelings.  All I have is my truth.

This is my truth.

Tonight I wept.  I wept like I have never wept before.  I wept in my Mum’s  arms as she cradled me.  She rocked me back and forth, holding me tight and soothing me with “it’s going to be ok” and “let it all out”.   She told me that it was ok to cry.  She told me it was ok to scream. She told me it was ok to let my mask down.

And I did.

I let my mask drop to the floor.  I let the tears flood out of me.  As the tears flowed I declared I couldn’t go on.  I declared I couldn’t take it anymore.  I couldn’t take the pain.  I was tired.  I sobbed that I was drained.  I sobbed that I didn’t remember what it was like to live without pain.  I sobbed about not being stronger.  I sobbed about not being better.

I sobbed.  I sobbed with my whole body.  I couldn’t stop.

I would love to lay here tonight giving out high fives celebrating our victory.  I’d love to praise myself and everyone around me for the strength we’ve displayed to get us through the past two days.  To get me through my first surgery.  But the truth is as I lay here in bed tonight I don’t even know if I am capable of expressing in words my feelings or thoughts of the past 48 hours.  It almost feels not real.  It almost feels like a bad bad dream.

But it is real.  It started at 6.40am yesterday when I gave my name and date of birth.  It continued at 12.30pm when I was wheeled into theatre and counted backwards under bright lights.  And it was still going tonight as I brushed my teeth and stared at a reflection of puffy eyes and pale skin.

Yesterday my surgeon and I decided to go ahead with part of the planned surgery and put a catheter in my neck.  We also decided that we wouldn’t go ahead with the tube in my stomach.  I was so relieved.  Instead we are going to work together and go back to the original plan of creating a super vein.

In twelve days I will go back to hospital and I will have my second surgery.  My second surgery will be on my right arm and we will cut it open to create my super vein.  My super vein will be my dialysis tool.

Tonight I am nursing my first surgery.  My new neck of tubes.  I haven’t looked at myself yet.  I haven’t examined my wound or my tubes wrapping around my collar bone and exiting my armpit.  I will need to soon.  But tonight I am going to take my pain killers and go to sleep.

This is my truth.

I survived.  I am alive.

It’s been a day of opinions and drama.

It’s been a day of negotiation and compromise.

It’s been a day of waiting and patience.

It’s been a day of questions and discovery.

It’s been a day of needles and pain killers.

It’s been a day of hard beds and bright lights.

It’s been a day of tears and holding hands.

It’s been a day of new faces and trust.

It’s been the most challenging day of my life.

Above all else, it’s been a day of big steps.  I did it.  I stepped through the looking glass.  I’m in my new ordinary.  I’ve had my first surgery.

In twelve more sleeps we do it all again.  In twelve more sleeps I will have surgery number two.

I have changed physically.  I have changed mentally.

I lay here wounded but not defeated.

Take II

I’m back in hospital.  I’m back in line.  Waiting to be called.  Lets hope we have a better day today.

Yesterday I prepped and I waited but my surgery was cancelled.  My surgeon at the 11th hour decided that he wouldn’t proceed with my surgery.  He decided that my veins were too small in my arms and that the super artery they were building would fail.  He predicted that I’d have lots of complications with my vein access and I would most likely need multiple surgeries to make it work.  He decided he didn’t want to do the surgery.  Instead I did more tests.

So today here I am again prepped and waiting for surgery.  We are going ahead with the temporary access in my chest and my doctors also want to put a tube in my stomach.  The one thing I decided from the start I didn’t want.  A TUBE in my stomach. NO! I don’t want a tube in my stomach.  I don’t want to walk around with bags of fluid in my handbag.  I don’t want to drain my own stomach multiple times a day.  I don’t want a tube in my stomach.

My options are limited.  My veins have constrained me.  They have betrayed me.  My whole body has betrayed me.  I hate my body.  I give up on it.  I want to give up on all of it.

I’m exhausted.

I’m confused.

I’m devastated.

I’m not even sure what surgery I’m having today.  It’s all turned into a blur.

Life as a sick person is not fun.  It’s a horrible circus.

I don’t want any of it.

I don’t want to be me.

Apparently my bed is not a time machine.  It can’t stop time. It can’t hide me from the world.

I got up.  I did my morning rituals and now it’s time to take a step.  A step towards my new ordinary.

I’m scared. I’m alone.

Goodbye this version of me.

Goodbye Fee.

Hello surgery.

I’m on my way new ordinary.

What do you have in mind for me?

Tomorrow is today.  I don’t have days until my surgery, I have hours.

I’m so scared.

I don’t want to get out of bed.  I don’t want to shower.  I don’t want to brush my teeth.  I don’t want to put my big girl pants on and be brave.

Leave me alone!  Let me stay in bed.  I want to pull the covers up over my head and pretend the world doesn’t exist, I don’t exist.  I don’t want to be me today.

Would someone like to take my place?  Walk in my shoes?

I don’t want to go.  I don’t like hospitals.  The smell makes my nose itch.

Wish me luck.  Hold my hand.  Don’t let me fall.

I can’t sleep.

My head is racing and my legs won’t stay still.  I’m so irritable I want to scratch my own skin off.

I’m petrified and tired.  A very weird combination.  I’m petrified about what I’m turning into.  My body will be changed forever.  I’ll have tubes and veins visible for the world to see.  The tubes will be a sign around my neck declaring me a sick person.  No more hiding.  No more pretending.  No forgetting.

I’m tired by the emotions.  I’m tired by the unanswered questions.  I’m tired from the trying to please.  I desperately want to sleep and dream of another time.  Dream of another world.  But my dreams are plagued with my worries.  I have no escape.  There is nowhere to run and nowhere to hide.  This is it.

I have a secret.  I’m still not ready.  I might smile and nod on the outside but on the inside I’m breaking.  On the inside I’m broken.  My wound is still open.  My wound is fresh.  I’ve not hardened.  I’m not protected yet.  I’m still soft and vulnerable.

I’m scared of tomorrow.  I never wanted tomorrow to come.  Now it is nearly today.

Please be kind to me tomorrow.  Please see my fear.

I have surgery tomorrow.

I become the new Fee.

Today I met Ceasar.  Ceasar is my counsellor.  Ceasar is my confidant.  Ceasar is going to help me fight for my life and stop me from losing my mind.  Ceasar is needed and welcomed into my new ordinary.

Today was my first session with Ceasar and I liked his questions.  I liked how simple he made my situation.  Yes a lot of it is common sense.  Yes a lot of it is about stating the obvious.  But overall for me it is about getting the right focus and committing to that focus.

My focus is staying alive.

Ceasar repeated several times during our session “you are fighting for you life”.  And yes I am, but it felt quite raw and confronting to hear this stranger in this strange room saying it out loud.  He isn’t my friend.  He isn’t my family.  He isn’t my work colleague.  Yet after just twenty minutes of chat he summarized my current situation in six words.  “You are fighting for your life”.

And yes I am.

I am fighting for my life.  I am fighting to survive this.  I am fighting to keep my job.  I am fighting to keep my friendships and my relationships.  I am fighting to keep my sanity.  I am fighting for my life.

I am finding this fight quite exhausting.  And I am not sure if I am winning.  I am not sure actually if there is a winner to this fight.  But I need to commit.  I need to focus.

My strategy is one day at a time.  My strategy is focus on what is in front in of me and not worry about what comes after that.  My surgery is what is next in front of me.  I need to follow the instructions.  I need to trust my surgeon.  I need to get through my surgery.

It was good to meet you today my new confidant.

My surgery is Thursday.

I am scared.  I am nervous.

I have two more sleeps.

I will get through my surgery.  Then I will ask what’s next.

I love flowers.  The vibrant colors.  The delicacy.  The smile of thoughtfulness and scent of love.  The moments of anticipation before realization of sender.  I love flowers.

Today I received gorgeous flowers sent from across the country wishing me luck with my surgery on Thursday.  They touched my heart.  I cried.  Thankyou for your lovely gift.

Thankyou to everyone for your messages of support and love, especially during this week. It’s a tough week.  A week of change and a week of progress.  I am anxious.  I am terrified.  I am hoping for surgery without complications.  I am hoping for a drama free entry into my new world of dialysis.

Three more sleeps and I take the first big step.

A step into my new world.

My new ordinary.

Please come with me.

Three more sleeps.

Four more sleeps.

Four more sleeps until my operation.

Four more sleeps and I’m changed forever.

Four more sleeps.

Today was one of those days that will be a magical memory.

It was a day that makes all the bad stuff disappear.  It was a day that reminds me why I must fight.  It was a day that makes all the pain, all the tears, all the needles, all the hospital visits worth it.

Today I saw one of my best friends try on wedding dresses for the first time.  She looked absolutely beautiful.  She took my breath away.

Thankyou my friend for inviting me to be apart of your special moment.  I can’t express enough how lucky I feel to call you my friend and how much today meant to me.  You are a beautiful friend and a beautiful bride.

Thankyou for reminding me why I’m fighting.