All posts by Fiona Barrett

Circus Show Day 227

This week I was shown what friendship is all about.

From the very start of this journey two of my work colleagues came forward and gave me unconditional support and have been there through all my ups and downs.  I now consider them my closest friends and I couldn’t have gotten through this without them.

On Wednesday these same two friends organised a morning tea in my honour at work.  The purpose of the morning tea was to raise awareness for kidney disease.  The turnout, the donations, the food baked, people who travelled and the engagement from my peers was overwhelming.  I’ve never experienced so much generosity and kindness and its hard to describe in words how it made me feel.  All I know is that for a long time I haven’t felt so much love, care and that my life might actually have some meaning.

Obviously I am not scared to be open and honest about my raw feelings, and I’ve already admitted in my recent posts that I’ve been struggling lately.  I have been feeling flat and defeated.  It’s been nearly 12 months since my diagnosis and its been a constant battle.  It’s been getting to me.  I’m tired and I started to question what the point was in fighting every day to stay alive?  It started to feel like a chore without any benefits.  I just couldn’t see a future for myself.  And it started to show.  The cracks were definitely being exposed to all around me.

Since my week away I have been feeling in a better head space but this week’s morning tea really clinched it for me.  Looking around the room at the morning tea and seeing all the people who came in support of the cause and me touched my heart.  It inspired me to keep going.  I now have a new view of my future and I now believe in what’s possible.  It’s a good feeling and I have you to thank for it.  Jess and Delara you are my saviours and my heroes.  Twelve months ago you were my work colleagues.  Now you are my biggest cheer leaders and my dearest friends.  You make me smile.  You bring laughter and hope into my grey world and I am forever grateful for the encouragement you constantly show.

THANKYOU for being you and for caring about me.  I feel very lucky to call you my friends.

Xxxxx

Circus Show Day 226

Hello Fee.

Are you back?

Are you staying?

Do you want to stay?

Maybe you can.

Maybe you are stronger than you think.

Maybe it was just a dark cloud that has now lifted.

Yes you are tired.

Yes this is hard.

But now you have a purpose.

Now you know why you need to keep fighting.

Hello Fee, welcome back.

Circus Show Day 225

I did it.  I went from one side of the country to the other and I feel good.  It was once such a simple thing for me to do.  Travel.  I didn’t even use to think twice about booking a flight and getting on a plane for work or for fun.  However, for the past eleven months, since my diagnosis, I haven’t been able to travel.

My greatest love in life is venturing into the unknown.  I love experiencing new cultures.  I love discovering new little places in this big world that we live in.  I love getting lost in new places that don’t know me and I don’t know it.  I love escaping into a world where I am just a visitor enjoying all the best bits.

And over the past eleven months one of my biggest fears would be that I would never be able to escape again. The thought of not being able to say goodbye to my day to day routine.  The thought that I wouldn’t be able to experience new things, not be able to meet new people and learn about how they live.  The thought of this is it, no more travel, no more escaping hit me hard.  But now I know that I can travel.  Ok it was only to the other side of Australia, but I will take whatever I can get.

Fingers and toes crossed I seem to have come home in one piece and I don’t feel ill.  I feel the opposite.  I feel invigorated and inspired.  I feel passionate again about why I am fighting to stay alive.  I feel more like me than I have done in a long time.

Who knew that a couple of days away would be so beneficial.

More small breaks are needed!  Where to next?

Circus Show Day 223

I feel invigorated and alive!  Who knew it would take a trip to Wollongong to help me feel like me again.

Ill be the first to admit that recently I haven’t been doing great.  Since my latest stint in hospital I have struggled to bounce back.  I have felt over whelmed by my illness and confused by my future path.  The reality of dialysis and the changes that I would need to undertake in my life hit home hard.  I didn’t like what I saw in my new ordinary and I didn’t want my life to progress.

Over the past two days I’ve travelled from one side of the country to the other.  This is the first time I’ve been on a trip since my diagnosis.  I was a bit anxious about going to the other side of Australia.  How would flying impact me?  What if I fell ill while away? But my worrying was wasted energy.  Surprisingly I felt great!  I’m not sure if it was the change of scenery or the new people I met but somehow I felt lighter.  I felt more like my old self than I have in a long time.

This has been an awesome trip.

Thank you Brad for being the boss you are and a great travel companion.

Thank you Illawarra Coal for making me feel so welcome and for helping me realise that my future doesn’t have to be grim.

I have a now to enjoy and I am going to focus on doing just that.

 

Circus Show Day 222

Its been a good day! A milestone day.

Today I flew across the country.  This morning I was in Perth.  Tonight I’m in Wollongong.

I didn’t know when I’d be able to travel again.  Or if I’d cope.  But I feel great!

Thanks Brad for bringing me along.

Its been a good day.

Circus Show Day 221

Decision time.  Stay awake or keep trying?

I’ve been in bed for nearly six hours and there isn’t enough lavender or sheep in the world to send me off to the land of nod.  I am beyond help.  So my question is do I just accept that tonight there will be no sleeping and just stay awake or do I keep trying and hope to scrape in a couple of hours?

Circus Show Day 220

On Tuesday I had a sliding doors moment.  A moment, upon reflection, that could have gone a very different way.  The impact of going through a different door would have affected every aspect of my life.

Tuesday was D Day.  It was a day where once again I was being cut open in the ongoing challenge to keep me alive.  I was having my veins fixed as my super vein had collapsed.  This larger than normal vein in my left arm is needed for when I have to go on dialysis.  When on dialysis we will use a dialysis machine to take my blood out of my body and clean it before putting it back into my body.  To do this needles will be inserted into my super vein and connect me to the machines with tubes.  Therefore it was important for me to go through this surgery on Tuesday.  I needed to fix my vein.  But at the eleventh hour my surgery was stopped.

Why was my surgery stopped?  Well first let me explain what my current number one goal is in life.  My number one goal is to stay off dialysis for as long as I can.  Dialysis is an invasive treatment that involves large needles, machines and hours and hours spent in a hospital bed on a weekly basis.  Yes it is an amazing life saving process that many people successfully incorporate into their lives, however it also brings with it a lot of complications and a new ordinary.  And personally I am not ready for that new ordinary.  I want to try and keep living a normal life for as long as possible. On Tuesday at the eleventh hour I learnt that this goal was about to be destroyed.

I had done all the right things.  I was up out of bed early and at the hospital by 7am, ready for my next round of surgery.  I was anxious and I felt sick.  But I was there, doing everything that my doctors had asked me to do.  I was following instructions.  I trusted that my doctors were competent and scheduling this surgery for me was just another needed step in my journey.

A few hours later I was laying on a rock hard operating table in a room that made me want to run and hide.   I was in the operating theatre.  I felt vulnerable.  I felt scared.  I was ice cold and shaking.  I had masked strangers surrounding me. I was about to put my life in the hands of these masked strangers.   I was trusting them  to take a scalpel to my body.  I was trusting them to fix me.

Before the final sedation was injected into my drip my surgeon wanted to do one last check that I understood what they were about to do.  He started his spiel with saying that what we are doing today is important as I needed to continue with my dialysis treatment.  Stop.  Wait.  What? Red flag!  I am not on dialysis and I have no plans on being on dialysis any time soon.  What is going on here?  He has the wrong facts.

“Um what do you mean continue my dialysis treatment?”

“You are on dialysis aren’t you?”

“No”

“Oh, ok.  I am sure you’ve been told that we are using dye today in this surgery.”

“No, but why is that important?  What impact will the dye have on my body?”

“Well as you are now at 7% kidney function this surgery will destroy that 7% and you will be pushed onto dialysis straight away”

“What?  Why am I only finding out about this now?  I am laying on an operating table and you are telling me this now?  Why would I choose to push myself onto dialysis?  Nobody would ever choose that, I don’t choose that.”

“Your notes say that you are on dialysis”

As he leant down and showed me the notes tears starting burning my eyes.  It was at that moment that I realized my world could have been turned upside down.  It was in that moment that I realized if  this ten second conversation hadn’t occurred I would have come out the other side of this surgery a dialysis patient.  I would have come out the other side of this surgery with a new ordinary in which I would need to be hooked up to a machine every couple of days to stay alive.  My nightmare would have become reality.  I would be living on a machine.  No choice.  No going back.  No days off.  My life would be forever different.  My life would revolve around hospital visits.  My life would revolve around needles, veins and pain.  To live I would need a machine.  This is my sliding door moment.

A few days later I can now reflect back and be grateful for the life I currently lead.  Yes I am ill however it could have been a lot worse.  I could now be dependent on a machine to keep me alive.  I do understand that the day will come when I need dialysis.  I do understand that this new ordinary will eventually arrive.  However, it doesn’t need to be now.

I can also reflect back on my recent experience and take a few learning’s.  I learnt that I need to continue to be inquisitive and ask questions about what everyone is doing to my body.  I own my body. It is the only one I have and it is my job to keep myself safe and to make informed decisions on what happens to me.  I can’t outsource that job.  Nobody is more concerned about my health and how I live my life than me.  And nobody should be.  I am responsible for the life I lead.  I am responsible for what happens to my body and I take that responsibility seriously.

It was a very close escape.  It scared me.  But I also learnt a valuable lesson.

Trust my specialists that they are knowledgeable in their chosen profession and competent in what they do.  But also continue to take responsibility for my own body and make sure that I am informed every step of the way on this journey.

 

Circus Show Day 218

This is it.  The dreaded drive.  I know what’s at the end.  And I’m scared.

More needles.  More masked strangers.  More cuts.  More stitches.

I’ll fake smile my way through.  I’ll swallow the burning tears.

You’ll believe that I’m strong.  You’ll believe that I bounced back without effort.

I’ll know the truth.  I’ll feel the pain.

Here we go again.  Another step in my journey…