Wednesday, February 29, 2012

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!

13 comments:

Susan said...

Dear Lea, I can only imagine just how hard it must have been for you to go back and read all your old blog entries.
I can understand the hurt that the thoughtless remarks from that lady had caused you, unbelievable! Oh my goodness, I think we've all encountered people like that in some situation or another - bless 'em ... pity help her if she had to handle anything worse than a broken fingernail eh!!
Those people you mentioned whom you could count on one hand are the ones to be treasured aren't they. Sometimes it's a relief to ask for help when you know that it's there for the asking :D) That's what I love about life - the fact that just when you need a lift, someone or something that you read, see or experience seems to pop up.
I mean no disrespect or diminuition of your old blog's entries, but I hope you're able to return to them less and less and that the anxiety you speak about also eases as time goes by and Bianca goes through her milestones of recovery.
With the kindest of thoughts for you and your family, Susan xx

Susan said...

Dear Lea, I can only imagine just how hard it must have been for you to go back and read all your old blog entries.
I can understand the hurt that the thoughtless remarks from that lady had caused you, unbelievable! Oh my goodness, I think we've all encountered people like that in some situation or another - bless 'em ... pity help her if she had to handle anything worse than a broken fingernail eh!!
Those people you mentioned whom you could count on one hand are the ones to be treasured aren't they. Sometimes it's a relief to ask for help when you know that it's there for the asking :D) That's what I love about life - the fact that just when you need a lift, someone or something that you read, see or experience seems to pop up.
I mean no disrespect or diminuition of your old blog's entries, but I hope you're able to return to them less and less and that the anxiety you speak about also eases as time goes by and Bianca goes through her milestones of recovery.
With the kindest of thoughts for you and your family, Susan xx

Ellie said...

Oh Lea, it must have been a very hard journey for you all to have been on. Some people can be very hurtful and sometimes I don't even think they realise it.
I know it's not the same as having a child with cancer, but my sister got cancer when she was 34 - is totally fine now (thank goodness). But I know how hard I found that and I know that worry feeling probably never goes totally away.
Surround yourself with people you love and who love you back.
Sending you lots of positive thoughts. Take care!!!!

Sue W @ Living the Good Life said...

Aye it happens, it's ignorance that does it. When our friends daughter was diagnosed with cerebral palsy, people she knew would cross the street or pretend not to see her, so that they wouldn't have to talk to her or have to look at Shannon. When she died at the age of 3, many said 'Oh well perhaps it's for the best!' WTF! It would make me so mad, how can a child dying be for the best! I found it very hard not to just punch people in the face! And I wasn't her mother, so who knows how she felt about it all, well I know how she felt!

Sue W @ Living the Good Life said...

Aye it happens, it's ignorance that does it. When our friends daughter was diagnosed with cerebral palsy, people she knew would cross the street or pretend not to see her, so that they wouldn't have to talk to her or have to look at Shannon. When she died at the age of 3, many said 'Oh well perhaps it's for the best!' WTF! It would make me so mad, how can a child dying be for the best! I found it very hard not to just punch people in the face! And I wasn't her mother, so who knows how she felt about it all, well I know how she felt!

Paul Forster said...

You've had a tough road and only those people who have been through something similar can truly feel your emotions. Kate leaving home to go to Uni was enough to send me off. However coping with the possibility of losing someone you are deeply connected to is on a completely different spectrum. At least you do know you have friends that you can count on.

Sharon said...

I hear what you're saying. I think, not matter the circumstance, that when one is faced with traveling down a path less traveled it will always be a lonely place. It totally sux but I guess it's the nature of the journey.
Our circumstance is completley different but I so relate to what you're saying, having walked the path of a 7 year infertility and recurrent pregnancy journey, followed by a parenting post infertility and adoption journey. Sometimes I feel surrounded by people but very very lonely and misunderstood.
I hear you Lea!

Marcia (123 blog) said...

I hate that your friends weren't there for you! Hate it!

It saddens me so that you had less than 10 calls in your 800-odd days of fighting this thing - you should have had SUCH a lot of support.

And you're not even bitter. Love that about you, lea.

RosemaryO said...

Well said Lea and all true. People do not want to hear about sad things and pediatric cancer is very sad. People want to be happy and always hear happy stories, but as we know, this is not always the case. Isn't sad how some people can be so rude and ignorant, like your aquaintance, it happens many times, I know.
I am so sure you will do a wonderful job giving your speech. You seem to be able to do anything you put your mind to and I know you will do a thoughtful (maybe emotional) speech. And a great job!!
Wish I could hear it, because I can so relate
Good luck
Rosemary

amanda said...

LEA, jy is so talentvol met woorde. Dalk is jy nog op pad na jou "roeping". Baie sukses met jou toesprake. En onthou altyd dat ek baie trots op jou en Terence is vir die wyse waarop jul Bianca se diagnose, behandeling en watookal daarmee gepaardgaan het, gehanteer het. Terselfdertyd het julle n nuwe baba gehad om na om te sien en n huishouding om in stand te hou. So jammer dat mense jul in die steek gelaat het. Tog het julle sterk bly staan!! Seenwense vir elke dag.
ma xxxx

Buttons said...

Oh Lea I wish I could HUG you right now. I have no idea what these worries are like I have been lucky enough to not have one of my girls go through this. This would be extremely hard.
I have had a tough year with M she had a concussion and could not drive or work for 8 months, she is back to work and is driving I am so proud of her she worked with therapy very hard. I was with her every step of the way. The other day she was speaking and she started to stutter her words, we both stopped and looked at each other. It took her a long time to get her thoughts and speech back to normal now I worry again.
As a Mom there is so much to worry about with normal things let alone the BIG things that you have went through Lea.
It is going to be fine we just have to believe in that. Take care and let us both agree not to worry. Hugs. B

Lien - all new adventures said...

Lea, I hope you will have someone record your speech tomorrow, and even better you will post it here for us to read/view/hear. Whatever you say will no doubt have an abundance of depth and feeling mixed with eloquence and honesty.

I applaud you.

Lien.

Julia said...

I hear you on the loneliness of being on a path less travelled. I seem to get more support from my friends in the computer which is wonderful but also a bit sad. My heart breaks for the fact that you received maybe 10 calls in that period. People just suck sometimes. xx