Wednesday, September 25, 2013

Dwelling on the past.

It's nearly the end of September.  

I'm not quite sure how that happened.  It feels like the days are all blurring into one now.

It was Nicola's birthday 3 weeks ago.  We knew how hard it was going to be, emotionally, to face the day, so we did the thing that made the most sense...  we turned tail and rain.

7 glorious days in Palm Cove.  We stayed at Mantra Amphora, in a gorgeous little apartment that overlooked the pool and we hid from the rest of the world.

It didn't work. 

Dealing with her birthday was so incredibly painful, so we did the thing that we did best...  we partied.  We started with lemonade, ice cream and bubble bath's for breakfast, then we strolled along the beach, paddled in the water and enjoyed fish and chips for lunch.  We had cake, complete with sparkler candles and noise makers...  then we went out somewhere nice for dinner.  

The only thing that was missing was the one thing we couldn't have, and that was our Princess.

Then we had to come back to reality...  and reality sucks.

Last week I was looking through all the photos we took while we were at Disneyland, and it was so hard to comprehend that that was 12 months ago.  It has been a little over 12 months since we set foot on the hallowed grounds of the happiest place on earth...  and indeed, it will forever remain the happiest place on earth.  It is still, and will forever more be the last place that we were together as a family and truly happy.  We shared so many memories, so many moments and so much love...  we were truly and most incredibly blessed to have such a phenomenal experience, and for that we will be forever grateful.

Then we came home and it all turned to pooki.  

12 months ago yesterday Nicola had her last MRI.  We already knew the truth, the cancer was spreading again.  It had been since June/July.  During her last chemo session in August even her oncologist in his round about way intimated that it had increased in growth...  but he knew what we already knew...  to scan early would change nothing except our chance to travel.  

So we plastered a smile on our faces, hiding the hurt and anger in a deeper place and went along on our way.  

Before her last MRI we had already been making plans...  we knew the scans would show growth within the primary tumor, and we had a tentative plan in place...  scan on Monday, results on Tuesday, Wednesday and Thursday to get ourselves organised, Friday to start driving to Brisbane, and Monday admission to try second chance chemo.

To say our plans were derailed is something of an understatement.  

Speaking to our local pediatric oncology nurse I had expressed a few minor concerns that we had had while we were away, and next thing I know we were on the phone to the oncologist in Brisbane.  He asked me questions, a whole bunch of questions.  I remember making a lot of jokes about things...  I blame it on the jetlag!

I remember joking that Nicola's decreased urine output was because the nappies in the US were so bad that she had been saving up all her wee until we got home!

My Mum was sitting in the recovery room with Nicola, and with my sister who had just had day surgery that morning...  they had come to visit us before Mum took my sister home for sleep.

I remember after talking to her oncologist I walked back into the small room.  I don't know what the expression on my face was like, but it must have been frightful because my sister dropped her drink and my Mum started crying.  I sat down and I couldn't breath.  My chest hurt, I was gasping, I couldn't breath, I couldn't talk.

That was the day that a massive freak storm hit the South East corner and we couldn't transmit any of her scan images to Brisbane.  Her oncologist told me he would stay until late, and if he hadn't got them by 10pm he would be back early the next morning.

Taking her home that day was so bitter sweet...  my sister, despite her own issues, had volunteered to take the other three girls so that Michael and I could talk, assess, try in some way to comprehend.

Comprehension never came, but confirmation did.  7.28am on the morning of the 25th September we got our final answer.  Our daughter was officially palliative.  There was nothing more that could be done.  The tumor had grown so large so quickly that it was obstructing urine flow.  They had even called in the surgeons at 6am to try and determine if there was anything that could be done surgically that could buy us more time, but they were all unanimous.  We were past the point of no return.  We most likely had been for several months. 

She had held on just long enough to do Disneyland before she fell apart.  

12 months ago today we started our journey descending into the depths of hell.  

It feels so surreal.  Every moment is etched into my memory, I can remember every word, every conversation, every expression...  the only thing I couldn't count is the tears.

Now, 12 months on, here we are.  So rapidly approaching her first angelversary and every day my heart seems to shatter just a little bit more.  

Every morning I wake up, I plaster a smile onto my face and I do the very best I can do get through every day.  

But right now, I seem to spend most of my time dwelling on what happened 12 months ago.

12 months is a long time...  but it is no where near long enough, and I don't think any amount of time will ever be 'enough'.


zzagz said...

SO much love, so much pain. thinking of you now and always xo

Stephanie Nimmo said...

heartbreaking - no words just always in our thoughts as we look at pictures of our own girl when she was the same age as Nicola and see the same cheeky grin and curly hair. Life is so unfair xxxx

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