Friday, May 18, 2012

Patience is NOT a Virtue!

You know, I hate waiting.

About 6 months ago a friend sent me an awesome little graphic and it said "Why must patience be a virtue?  Why can't hurry the f*** up be a virtue?"

And it is so the story of my being!  I am NOT a patient person!

I have never been good at sitting around twiddling my thumbs and waiting on someone else to make decisions, I much prefer to just decide and get on with things.

I hate waiting around for answers...  and more than that, I hate waiting for results.

In the last 4 years, since shortly before Nicola's birth, I have done a lot of waiting.  I have been waiting on other people, waiting for answers, waiting for results, waiting for SOMETHING...  I have done so much waiting I have lost track of the hours I have spent whiling away in waiting rooms, waiting for phone calls, waiting for times and dates, waiting for answers...

But none more so than in the last 6 months.  I think all I have done in the last 6 months is wait.  

I keep waiting and waiting...  but it seems that the more I wait, the less I like what I hear...  and each wait is growing successively agonizing...  

And now, here, tonight, I am waiting again...

Waiting for next week...  for a teleconference that will be set up at 'some time' to allow us to talk to Nicola's doctors in Brisbane without actually having to fly down there...  so hopefully they can make a decision about how we proceed and what we do next.

For the last 10 days or so we have seen a noticeable decline in Nicola's well being.  In general her health seems to be going backward.  Her hemoglobin levels are not remaining high for anywhere near as long as they had previously, she had her last transfusion 4 weeks ago and needs another one again now already...  she is neutropenic for the first time in six months and she seems to be wanting to sleep a lot. 

But beyond that, her tummy is very swollen and distended again, and there is a soft protrusion around the area of her pelvis, about where the tumor is suspected to be.  Her pain levels have deteriorated significantly and even an increase in her pain medications has only seen a slight improvement in her happiness...  and her comfort levels have significantly decreased.

The concern?

That her tumor is growing, despite still being on treatment.

While we are trying so hard to be positive, it is proving to be incredibly difficult.  While my heart is screaming at me that everything will be OK, there is that tiny little voice in the back of my mind screaming that it's all bad...  we haven't had much luck so far in this journey, we seem to be coping one shocking blow after another, so I don't know that I really truly expect this one to be much different.

It is starting to feel like for every little tip toe forward we take, we are sent on a flying leap backward.  

I feel lost.

I feel confused.

I feel so very, very hurt...  

I don't understand why this is happening.

I don't understand why a beautiful, sweet, innocent little girl who has already suffered so much in her little life has to continue to suffer like this.

I feel so very, very angry that this is happening at all!

I really, really just don't understand...  and I don't like it.

I want to go to bed, to go to sleep, to actually get some real sleep, and wake up to find that the last 7 months have been a long, horrible dream and everything is back to the way it was... 

Instead I am sitting here, trying to juggle a thousand emotions and thoughts and make sense of a reality that seems to be crumbling into a horrid mess at a rate that is so much faster than we had ever thought would be possible.

We are trying so hard to hope for the best... but it seems to be getting harder and harder with every passing day.

1 comment:

Leonie Rogers said...

I can only feel a sense of your despair and confusion and fatigue. I do not know how you find the strength to keep going, but as mums it's what we do.

I am grateful that you share your thoughts with us. I would like to think that everyone reading your posts picks up a little piece of you and carries you and supports you.

There is nothing we can do - this will not go away - but we can be there for you: invisible listeners who reach out with words of support, love and encouragement.

You, Nicola, your family: all amazing people for different reasons but ultimately the same purpose: supporting Nicola.

Please give her a huge cuddle from me, my three children and may this just be a small glitch before things pick up.

We love you and admire you.

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