A lonely road to travel

This is not a "feel sorry for me" blog entry.  This is simply a bunch of rambling thoughts.

Last night I found myself feeling rather down.  I was busy working on putting some content into my speech for Friday, reading parts of our old blog to help me work out what I could and should put into my speech and listening to one of my favourite songs:

 

It's funny the things that suddenly pop in your head.  The snippets you remember. The thoughts that pop into your mind.

Pretend to be strong
To smile
And laugh
And sing a happy song
But deep inside
I'm dying
Each time I see you cry
Each time you fight the fight
From late at night
Until the morning light
Your spirit trapped
In this moment
Dreaming
And longing
What lies beyond the gate
How do you pick up
The pieces around your feet?
Where do you begin
To find yourself again?
When it all seems lost
A never ending race
This moment that is now

One of the things I remembered feeling was how incredibly lonely the journey was for us.  In the whole time that Bianca was receiving treatment we very rarely heard from people outside the child cancer circle (there were a few really supportive people, but a lot of others simply disappeared).  This is now not counting blog followers.  I can count the number of phone calls we received during the 830 days on my one hand (okay maybe 2 hands at a push). One phone call in particular left me laughing at the end of it.  

We met this couple shortly after we arrived in Wellington (the first time we moved to Wellington in 2005).  And for a while it seemed that the friendship was going well (of course later on I did realise that it was very much a one-way street where I was very much taken advantage of, but anyway).  Within the first week that Bianca was diagnosed she called me up one morning wanting to get the full story.  And of course the usual "if there is anything we can help with, just let us know", but often you can hear in somebody's voice when they really don't mean it.  And to be honest it is incredibly hard asking for help.  I never heard from her again until probably a year later when she rang me up again. "Hi, how are you doing?  How is Bianca doing?"  so of course being asked I was explaining how things were going, how Bianca was doing at that stage and so on.  She then said "Uh-huh...anyway the reason I'm calling is that I'm selling these affordable phone packages and I was wondering if you would be interested in changing your phone supplier".  Just like that.  Subject changed.  It wasn't that she was really interested.  This was simply just to make some money off me.  It was all about her.

And this is really how it is.  When people ask you how you are, they are not interested to know how you really are, they simply want to know "I am fine" and then move on to another subject.  But I do get why this is.  Child Cancer is not something people understand unless they are dealing with it themselves (which I really really don't want).  And in fact the expectation is never that somebody must understand.  But simply listen.  Give the opportunity to talk and share or not (in which case just be there). When you are in the thick of it you sometimes wish people would look beyond your smile.  To be strong for your child and not show them just how scared you are you do a whole lot of pretend all of the time.  You smile and act happy and strong and after a while it really just becomes second nature.  Almost easier than really dealing with the things you are feeling and the fears that lurk in the back of your mind.  You kind of have to!

We are now at a different stage of the journey.  While many may assume it is all over because Bianca looks no different to another 8 year old, the truth is she is still not officially considered cured.  There are still sometimes fears and anxieties that catch you when you least expect it.  And sometimes it hits you when you realise all over again just exactly what you went through.  Now there are different issues that we need to look out for and worry about, things like how will the chemo affect Bianca's memory, her concentration, her ability to have kids one day, will she get another cancer because she received chemo - those kind of worries.  And nowadays more than before people really are not interested.  More often than not, they quickly change the subject or try to brush off your concerns.  And that is life really.  

When I was looking through our old blog it occurred to me again the complete loneliness and isolation of this journey was (and is) probably one of the hardest things to deal with.  Almost like an exclusive club (except not one you want to belong to).

But that is life really.  Simply just life!