Category Archives: Show Day

Circus Show Day 89

Here I go again.  On my way to the big white building of needles and pain.

A familiar feeling of anxiety mixed with nausea and a dull headache has washed over me.

What exactly is ahead of me today is a mystery.  I will have to brace it and take whatever comes.  I will smile through gritted teeth and tears and thank my uniformed friends for helping me and saving my life.

Circus Show Day 88

The unpredictable planning of my new ordinary strikes again.  My short hospital day that I was hoping for tomorrow has been transformed into an all day event.  Tomorrow I will be getting an iron transfusion and my chest tubes removed.  It has been decided that I won’t be having dialysis for at least another four weeks.  In four weeks my super artery in my arm would have healed and be strong enough to take on two pen sized needles and cope with the power of Kevin my magic dialysis machine in all his blood swirling glory.  Therefore I don’t need my chest tubes and they can come out tomorrow.  Which is very exciting because they are painful, awkward and ugly.

I am not worried about the iron transfusion but I am a bit concerned about the removal of my chest tubes.  My question is why did it take me to be under general anaesthetic and a two hour surgery to get my chest tubes in but they are only going to use a local anaesthetic and a day bed to get them out?  I questioned the nurse three times today.

“So what you’re saying is that I will be awake while you pull out the tubes from my heart, through my neck and out of my chest?”.  And each time my response was an unwavering “yes”.

I am sure this is a very simple procedure for the nurses and doctors.  But for me my mind is going into over drive.  I have images of Edward Scissorhands hacking away at my chest before he grabs my tubes with one scissor and yanks them out in one swift and rather painful movement.  Edward Scissorhands has a look of success and glory as he holds out my chest tubes in a victory wave and I lay bleeding, faint and traumatised with a huge hole in my chest.  Very dramatic I know, but that’s where I’m at.

These tubes are inside my neck.  These tubes are inside my heart.  How can I not feel them come out if I am awake??

So tonight I go to sleep with disturbing thoughts, mild nausea and a fear of what new and glorious experiences my trip to the hospital tomorrow will bring.

Oh well nobody could accuse me of leading a dull or predictable life….

Circus Show Day 86

Two more sleeps and back to the hospital.

I am hoping my visit this week will be a short one.  This week I’ll get my chest tubes flushed and the dressing changed.  I’ll get my veins in my arm checked for healing from surgery.  And then finally I’ll get some bloods taken.  I reckon all up about 2-3 hours.

I’m starting to learn hospital time.  It’s very different to corporate world time or normal everyday time.  Hospital time is almost like dog years.  I know if I have an appointment at 8am, I’ll actually be speaking to someone around 9am.  If I am asked to register for surgery at 6.40am I’ll be going into surgery around midday.

I’ve also noticed that the hospital I visit doesn’t have any clocks.  No clocks on the walls.  No clocks on the admin counters.  No clocks in the consultation rooms or clinics.  I’m not sure if the lack of time devices is a strategy to try and lessen the amount of complaints received about the lengthy waiting times.  Or is it simply a clear indication that time isn’t relevant once you enter the hospital world.  It is one big timeless vortex and I am at their timeless mercy.  I have already lost count of how many hours I’ve spent waiting.

On the flip side I shouldn’t complain about the hard plastic uncomfortable chairs or the lack of volume on the TV, as this system of doctors, nurses and waiting rooms has saved my life.  The timeless vortex that has quickly become my second home saved my life and continues to keep me alive.  As unplanned and dysfunctional the system might seem without it I would be dead and not enjoying the fun of another silly season.

So yes I absolutely dread my hospital visits.  I still find myself unable to sleep the night before and I have little panic attacks on my way to the huge building of whiteness and heart break.  But I also know that these visits are my lifeline and will be apart of my life forever.

As my dialysis nurse reminded me last week my disease isn’t just for Christmas, it’s for life.

Two more sleeps.

Circus Show Day 85

I have heard many times that the test of a relationship isn’t when life is grand.  The real test of a relationship is when the chips are down.  The real test comes when we have to dig deep and find a path through the minefield of drama, trauma and the unexpected.

My life has turned into the unexpected.  I haven’t been given a guidebook on how to navigate through my current situation.  I don’t know what the best behaviour is.  I don’t know what the answers are to happily ever after.  I don’t know if I even believe in happily ever after.  All I know is that I want to live.  I don’t want to die and I want love in my life.  I want happiness in my life.

This is my second chance.  And it’s off to a bit if a rocky start.  I’m so conflicted.  I’m so worried about making the wrong decision.  But is my fear based on what was?  Is what I’ve known no longer relevant?  Do I let it all go and start fresh?  Or do I hang on and try for different?

Where is my map?  Where is my safety net?  My heart aches as this has been a lonely journey.  But I don’t want lonely anymore.  I want more.  I want life.  Am I too late?  Do I now need to accept whatever I can get?  Do I have the right to want more?  I should just be grateful to still be alive.  I should be grateful to still be breathing.  I should be grateful to be seeing blue skies and sunsets.  And I am.  But I want different.  I want laughter back.  I want more.

I feel lost today.  Yesterday I felt alive and energised.  I took five steps forward and three steps back.  This is such a confusing time.  Who am I?  Where am I?  I don’t want to wear the label of a sick person.  I don’t want care.  I want life and love.

Today has tired me.  My thoughts are tiring me.  Do you have endless thoughts?  I do.  I wish I could stop them or at least dull them at times.  But they are at full pace today.  They are relentless and exhausting me.  I don’t know what my answers are today.  I don’t know how to combat hard.

Circus Show Day 83

The grey clouds are shifting.  I can see glimpses of blue sky.  I feel my darkest days have passed.  I feel my strength building and my life returning.

I can look behind me now and see the bleakest moments that engulfed me over the past two months.  The diagnosis.  The surgeries.  The starting of dialysis.  These are all moments that triggered a chain of reactions.  Reactions of pain.  Reactions of hurt.  Reactions of disbelief and denial.

My dialysis nurse said to me today that I need to grieve.  I need to grieve for the life I’ve lost.  I need to grieve for the dreams that I can no longer chase.  I need to grieve for the tomorrow that won’t come.  And she is right.  And that is what I have been doing.  For two months I have grieved.

I’ve lost count of how many times I’ve cried in the bath or wept myself to sleep.  I’ve lost count of how many times I have found myself crawled up in a ball on the floor or on the couch unable to breath from the heaviness in my heart and in my chest.  I’ve lost count of how many times I wished to be someone else.  Someone healthy.  Someone not fighting for survival.

But as I listened to my nurses advice today I felt that the majority of my grieving is yesterday.  I feel that the majority of my grieving is behind me.  I can pin point my lowest day and my lowest moment.  I can remember the pain I felt.  I can remember the crippling heart ache and the feeling of complete and utter devastation.  I felt alone and weak.  I felt broken and without hope.  I will never forget that moment.  It will stay with me forever as a reminder of how hard life can get.  A reminder of how low I’ve been and how low I never want to be again.  A reminder of why I must fight everyday.  A reminder of the second chance I have been given.

And I think that is where I find myself today.  Call it acceptance.  Call it moving forward.  Call it the fourth step.  Call it whatever you want.  All I know is that I feel less like a zombie and more like a functioning human again.  My want to hibernate under my doona morning, noon and night has disappeared.  My want to scream, cry and rip my own skin off to be free of me is less.  My aching heart and heavy shoulders are lighter.  I again want to stand upright amongst friends.  I again want to see daylight.  I again want to talk and laugh.

I now want to be me.  Whoever that is.

I’m different.  And I want to be different.  I want to live differently.  I don’t know what that means yet, but I’m on my way in figuring it out.  It will take time.

The grey clouds are shifting.

I can see some blue sky, and I like it.

Circus Show Day 82

If I could go back in time what advice would this older and wiser Fee give to a younger Fee?

I have given this much thought over the past few weeks.  There are many life lessons I would share but when it comes to kidney failure and what I am currently being challenged with I would say three simple things:

  1. Drink more water
  2. Have regular health checks
  3. Be an organ donor

The crazy bit is when I read these three pieces of advice I realize how simple and easy they are.  They don’t require a lifestyle change or lots of money spent on gizmos that lay neglected in the back of a kitchen cupboard.  They don’t require weeks and months of dedication.  They are simple and anyone can do them.

Drinking more water is something that I have only really started to do over the past few years.  Growing up and in my twenties and early thirties I would never have a bottle of water in my work meetings or in my handbag.  It just wasn’t a habit that I had formed.  Now water is the first thing I think of when leaving home or getting settled in for a day at work.  Water is so readily available there is no reason why any of us should go without or deprive our organs of the much needed liquid gold.

Having regular health checks I also neglected in my life.  This is the one that I really do wish I had paid more attention to.  To take an hour out of my life every year to visit my local doctor and do a few tests now seems so easy.  What is an hour?  That hour every year could have prevented the health crisis that I now find myself facing.  That sixty minutes could have prevented all of the pain and heartache that is now consuming my once happy and carefree life.  Just an hour every year and I could be enjoying another Christmas with my family as a healthy and happy adult.

I have been someone that was almost proud of the lack of time I spent with my GP.  I was almost proud that I would push through illness, aches and pains without reaching out to my local doctor for support.  “I don’t need a doctor to tell me what is wrong, I can deal with this”.  How many times did my back hurt me over the years?  How many times did my legs swell without explanation?  How many times did I have a taste of metal in mouth that I self treated with strong mints and chewing gum?

I am not very proud now to say I was a fool.  I am no spring chicken.  I should have known better.  But I didn’t.  I didn’t do regular health checks.  I spent time in denial about my MS and did the minimum I could with that.  I am not too proud now to admit that I was wrong.  I should have listened more.  I should have done what the doctors had asked me to do instead of taking on a MacGyver approach to my health.  If I had been smarter my symptoms would have been confirmed through tests and I would have had early detection of a disease that will kill me.  If I had been smarter I might not be facing life on a machine.

The third piece of advice is the easiest of them all.  Be an organ donor.  It is as simple as ticking a box on your license.  This is actually one that I have done my whole life.  Since I first got permission to cruise the streets at the age of seventeen I have always been an organ donor.  There is something magical to me about dying but living on.  By giving away my organs when I die I get to be a hero through death.  I get to help someone else live and I keep on living.  A piece of me keeps living.  How can anyone not want that?  What a waste to rot in the ground or turn perfectly good organs to ash.  Keep living on and be generous in death I say!

So that’s my top three for a younger Fee.

But I can’t turn back time.  I can’t do ‘if only’.  I now need to face my fate head on.  I need to do whatever it takes to survive.  Right now that is recovering from two surgeries and getting my strength back for more tests so I can get myself on the donor list.  Right now I just want to enjoy a relaxing Christmas with my family and friends.

There is no turning back time.