Tomorrow I am back.

Back to the white needle palace.

Back to the place where lives are saved and dreams die.

Back to the place where fear is eaten for breakfast and demons are fought at night.

Back to the place where reality has no colour.

Back to the place where I can’t hide or deny.

I’ll be there 7am ready for the scalpel.  Ready for my next surgery.

Be gentle please.  My words are strong but my mind and body are weak.

Tomorrow I go back.

3 more sleeps….

This week I felt energised.  This week I had a spring back in my step and I smiled, a lot.  The reason for this feeling of positivity wasn’t because my pains have disappeared or because my body feels any better but because I experienced first hand that the human spirit is alive and well.

Throughout my recent journey the support I have received from my work colleagues has been above and beyond any expectation I had.  I know that I wouldn’t be here today if it wasn’t for their unwavering care and for that I am forever grateful.  But this week my small team stepped it up a notch.  They have rallied the troops to put together a morning tea to create kidney disease awareness and raise funds for Kidney Australia charity.  I have been blown away by their commitment to the cause and the generosity of everyone around us.  It has touched my heart and inspired me.

Jess, Delara, Lee and Brad you are my inspiration and my light.  You have shown me love and support just when I needed it the most.  My words can’t express how grateful I am to you and our regional team mates for being there for me.

THANKYOU.

Today was a good day.  I had some energy back.  I had some laughs.  I felt positive.

I need more of these days.

My Dad died eleven years ago.  Eleven years sounds like a long time and the pain of him dying isn’t as raw as it was at the start, but I miss Dad more today than I ever did.  I often think of all the life changes I wish I could share with him and how I dream of just one more day with my Dad.

In my dreams I know exactly what we would do together.  We would lazily wander through the Freo Markets smelling the coffee beans and buying boxes of fruit and veggies.  Dad loved the markets and fruit in his opinion should only be bought direct from the grower and by the box.  I think it reminded him of how they shopped in the markets back at his home in Italy.  For lunch we would go across to the Asian food hall for his favourite cuisine followed by a walk across the park for a beer or two at Little Creatures.  We would sit outside laughing, chatting and relaxing in the sun before heading up the street to the continental deli for coppa, prosciutto and a tub of olives.

Our final stop would be my favourite, an Italian café for a short black and a generous slice of tiramisu – which I would get to eat the majority of as Dad doesn’t like cream.   We would be surrounded by the smell of Nonna’s special sauce and red and white tablecloths.  It would remind Dad of Italy and we would have an afternoon of storytelling about his life growing up there.  These were my favourite times spent with my Dad.  I remember when I was living in Sydney Dad flew in for a weekend visit.  We hung out the whole  weekend together with four hours on the Saturday afternoon being spent in a small café at the Rocks sharing stories over multiple short blacks and two slices of cake.

I cherish that afternoon more than anything in my life.  What I wouldn’t give to have just one more day with my Dad, my dream day.

I wonder if I died would anyone miss me?  I wonder if I died would anyone have a dream day with me?

Being open and honest about how we feel is something that I think we all struggle with.  I know personally I am torn between wanting to be honest and open with everyone versus knowing my audience and tailoring my level of honesty accordingly.

Being asked how I am in relation to my health is now a daily conversation.  My main interaction is with people at work and due to my most recent collapsing episode everyone around me is very aware of my medical condition.  This is not an issue for me as I wish to bring awareness to kidney disease and I also feel very lucky to have such a strong support network around me.  The issue is that most days I feel like crap.  Most days my back is killing me.  Most days I want to scratch my skin off.  Most days I feel as though my limbs aren’t connected to my brain and that I am walking through quick sand.

But on the flip side, most days I don’t want to reply a “how are you” with a list of my ailments.  What I actually want to do is put a smile on my face and say “I’m good thanks”, “how are you?”.  Because that is also actually the truth with how I am feeling.  The fact that I am at work means it is a good day.  The fact that I am capable of walking means it is a good day.  The fact that I can interact and think without bursting into tears means that it is a good day.

That is why I am torn.  I do feel good because I am at work and I am interacting.  I have a purpose and I love my work.  But I also feel pretty lousy as my body is breaking down and I feel that I don’t have any control.

So in thinking all this through, I will continue to try and be real and hope that everyone understands that I don’t always want to focus on my health as it is a continuous bad feeling.

Why does good news usually go hand in hand with bad news?

My good news is that I didn’t have surgery as planned yesterday.  This decision was met with screams of joy on my behalf as it meant my stay at the building of death and illness was cancelled.  It meant no needles.  It meant no cutting of the skin.  It meant no strangers in masks.  It meant no recovery.  It meant no additional pain.

The bad news is that I am unstable and the surgery has been rescheduled for August 16.

Two more sleeps …I’m anxious

Three more sleeps and back to the scalpel…

It is now 10 months since my initial diagnosis of kidney failure.  Time has flown.

Today I took some time out to reflect on my earlier blog posts and this one in particular (Circus Show Day 5)  struck a chord with me.    I had only been in hospital for five days and we were still running lots of tests to determine my full diagnosis.

A lot has changed in the 10 months since I wrote the blog below, but I still remember how I felt like it was yesterday.  I remember how scared I was.  I remember the constant knot in my stomach.  I remember the pain in my arm.  I remember the look of fear on everyone’s face around me.

CIRCUS SHOW DAY 5