My “Gethsemane”: The night before they removed my daughter’s brain tumour

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The night we found out Hana had a brain tumour, my mum lit a candle for us in the UK and sent us the photo. I couldn’t think of an image that would truly embody the gethsemane night for me, if there was an image it would have to embody what my fear felt like and nothing in Google Images or my camera roll will be able to do that. So for now, this will suffice!

I didn’t set out to write this post, it was actually supposed to be about the day of my daughters surgery, but as I started writing, this one decided it wanted to come out first. If you are a writer you will understand how this happened – words that want to come out have a way of doing so and often end up surprising you in the process. Here are some of my words and surprises.

The night before the surgery to remove my daughters brain tumour was the darkest, longest night of my life. But if I were to remember it in colour it wouldn’t be dark or black but sheer white, like the bathroom wall where my thoughts bounced off and onto the tiles as I showered.  White, like the pain of child birth when the room around you ‘fuzzys’ then disappears into white noise, your noise as you scream and groan your baby out. Clinical, starched white like the hospital bed my daughter was now sleeping in. I remember studying Shakespeare’s Henry V in school and reading his agonised ‘dark night of the soul’ before the big battle, my teacher compared it to Jesus in the garden of gethsemane, the night before his crucifixion. This was my ‘dark night of the soul’, my Gethsemane, my darkest, whitest night.

I spent the hours pacing up and down the small living room of the serviced apartments we’d chosen near to the hospital. Then I would sit on the hard, comfortless couch and cradle my head in my hands, pull tightly on the hair hanging over my ears, my heart racing and stomach knotted like I’d drunk five coffees in a row. Sod’s law that night there were roadworks right outside the bedroom window. Drills cutting deep into the tarmac.

Tack – Tack – Tack

The sound of cracking concrete wracked the stillness, echoing up and down the street at a billion decibels mocking any suggestion of sleep. But sleep wasn’t an option for me anyway, there is no sleep when in only hours, my daughter’s skull would be opened in theatre by a drill of a different kind. I imagine what that will sound like. The sound, to the neurosurgeon and the anaesthetist will be a familiar sound, the sound of a drill cutting into bone. A skull. Just another day’s work, just another patient, just another skull. Perhaps they would chat about what they watched on TV the night before, or what they had for dinner while they do it. Make smalltalk to the sound of their drill cutting into my daughters skull. Her head, her brain, her life in their hands. My head swirls. I imagine myself fainting.

Tack – Tack – Tack

I go back to the bedroom and, eyes impossibly wide with the most powerful adrenalin my body had ever produced, I cradle my three year old daughter in my arms. Her tears are barely dry on her cheeks after she’d cried herself to sleep asking for her sister, Hana. “I don’t understand Mama” she’d sobbed as I tried to explain why she’d had her bath alone, that Hana was in hospital with daddy.

This is what fear tastes like.

The bedroom door was wide open, orange light creeping in from the lounge lamp I’d purposely left on. Like a child scared of bad dreams I was afraid of the dark that night. I thought the light might quell the rushes and clusters of thoughts  rising and then crashing down on me like waves in the ocean. That the darkness alone would bring with it things I didn’t want to think. But I was wrong, the light was useless and the thoughts exploded brightly behind my open eyes, like fireworks.

Is the surgeon sleeping well? Is he at a social function now or in bed? He should be in bed… What if he isn’t feeling well tomorrow and has a ‘bad day’? What if it’s not a craniopharyngioma? What if it’s malignant?  What would her life expectancy be if so? How would we spend her last months? What if she wakes up brain damaged? What if she dies on the operating table?

This what fear smells like.

Dark possible worlds, weaving their way into my exhausted mind like a cancer themselves. Life without Hana? How could I move without her? How could I ever willingly take another breath without her? I imagine a complete world without colour and I see myself, broken within it.

Then I’d shake my head and push those white whispers away. White, the colour of my fear.

Get a frickin grip.

She was going to be fine.

She would pull through the surgery and it would be a craniopharyngioma and we would deal with the fallout. The lifelong health consequences. Her future health would be our project and we would make it all OK.

The drill stopped at about 5 a.m and I think I drifted off to sleep then, for an hour or so before my alarm beeped. This was it. I felt sick, my head spinning, legs like jelly. Back into the white tiled shower where my thoughts  – bubbled with creamy, ivory Dove soap – reverberated with a new urgency sounding like white noise above the butterfly caged in my chest. The taste of black coffee thick in my mouth. This was the day.

Background: At the start of 2014 my beautiful five year old daughter was diagnosed with a brain tumour: When they told me my daughter a brain tumour… and how I already knew. I don’t usually blog quite so personally as “Nurse Naomi” but I’ve decided that in this instance I will. I want to share our journey with you.

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  6 comments for “My “Gethsemane”: The night before they removed my daughter’s brain tumour

  1. February 7, 2014 at 12:03 am

    Painfully moving. An amazing insight into the fear, emotional turmoil, and frenzied adrenaline moments that none of us would wish to experience. The bond between mother and daughter is beautifully portrayed. You are a gifted writer. Xx

  2. February 7, 2014 at 1:02 am

    That was so powerful, Naomi. I’m hugging my child right now.

  3. Rasha barakat
    February 7, 2014 at 3:47 am

    Naomi this is so profound and touching

  4. Naomi R Cook
    February 9, 2014 at 8:03 pm

    You are all so sweet thank you x

  5. Belinda
    February 12, 2014 at 11:10 am

    Hi Naomi, my daughter also has a craniopharyngioma. She was diagnosed when she was 2.5 years old in May 2012. We are also under care out at Westmead Childrens Hospital. I wish your daughter all the very best, they are tough these kids.

    • Naomi R Cook
      February 14, 2014 at 3:24 am

      Hi Belinda, I’ve just sent you a message back on Facebook, do get in touch – there is no support for parents of kids like ours x

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