Sunday, October 25, 2009

The new normal....

Hi Everyone. Long time, no post....sorry!

Well, we're back from Bali and had a good time, although it really wasn't what we expected. I suppose as Pommies, we were expecting a beautiful island paradise, but the reality is rather different in that the island is really very dirty, and sometimes quite smelly too. We just didn't expect to see that so it was a bit of a shock. Also the condition of the animals, especially the dogs, made our hearts ache too.....We ended up travelling 3 hours to the only animal welfare organisation in Bali so that we could offer some help.....!

However, the Balinese are just the most gorgeous (inside and out) people. So polite, obliging and happy. Many of them have so little and live a life that we cannot even imagine, yet, they're happy.....

Just before we left for Bali, Meg had a review for the results of her CT scan that was done a couple of weeks earlier. We were told that there seemed to be a follicle on her right ovary, which they're sure is nothing to worry about, but she's having an ultrasound tomorrow just to be sure. We really don't expect this to be a problem, but I personally prefer to err on the side of caution and rule it out.

Meggie is doing great! Still looking good, and even has a bit of a tan now! On the whole, she enjoyed Bali, especially the snorkelling day we had at Mengangan Island. I was really proud of her! She's always very reluctant to get into the ocean here in Oz (probably because there are so many things that can sting or kill you!), but at the island, she slapped on her mask, snorkel and flippers and floated around watching the most amazing variety of fish, AND a turtle(!) for 2 hours! It was awesome!

I joined a telegroup this week that is facilitated by Redkite. We're a group of 6 parents of children fighting cancer, from all over Australia, and once a week we'll be having a "conference call" to talk, support, vent, etc.... This week we talked about "The New Normal". This is a way of us realizing that what we considered to be "normal" will never happen again. Once a child has (had) cancer, they change...... I really can't say how what Meg has gone through, truly affects her.... I see it all, I support her through it all, but I can't do it for her. I don't have to have needles, big operations, poison pumped into me, lose my hair, people staring at me, the uncertainty of my future. At the end of the day, in spite of all the love and support that she receives, MEG is the one that has to go through these ordeals. And that MUST make her angry as hell..... I'd be bloody angry.... and I'd want to vent that anger. And that seems to be what the "new normal" is for us at the moment. Lots of volatility, for the slightest of reasons, but at 11 years old, maybe that's the only way she can get it out....? Even as an adult I have feelings that I just don't know how to process sometimes....frustrations, anger, sadness, fear, .... how hard is that for a child that's only been here for 11 years?! I know I'm rambling, but this is something that we're struggling with and I find that once I start typing, things start to make more sense to me.... The interesting thing is that once I threw this issue into the telegroup, I heard a resounding "I hear ya!" from the other parents. We're all going through similar kinds of behavioural issues. It's like the chemo changes your child's personality....but it's probably more that it changes their reaction to life, based on their horrendous experience of cancer.... I don't know....

The thing is, when your child is in remision, everyone thinks "Fantastic!! That's wonderful news!" And it is! It IS wonderful to see Meg doing regular things, enjoying life and being a normal young girl. BUT, it in no way means that your anxiety, struggles and fear are all gone. I'm constantly scared that it's back. The slightest twinge or pain, and I have a fear that "something" is going on. And there's a "fallout" - the results that are left from the damage that the diagnosis, the treatment, the experience, and the unpredictability of the disease leave. It makes me SO angry.

I know I shouldn't say "Why my Meg?" and I really don't very often. I know that our lives are very blessed compared to millions of people around this globe. But now and then, I do ask that question. I'll never know the answer.

I also did something this week that I'm not sure I should have done..... I watched "My Sister's Keeper" on my own (which was probably better than watching it with anyone at all!). I ended up crying harder than I've cried in a long time.... I would call it a "purge". And like my lovely boss said - it was cheaper that 6 councelling sessions!! The movie covers only the surface of what cancer patients go through, but enough to see what a nightmare it is...

I'm starting to think that this blog is a bit like a virtual councellor....

Anyway, ramble to PMH for the ultrasound tomorrow. I'm sure it'll all be fine and dandy.



Kiera said...

Still here, holding our breaths, sending our prayers and keeping ultimate faith in you and yours.

Meg's hair is looking so Stunning!!

Always here if you need us,
the pedleys

Anonymous said...

Can only repeat what Kiera has said.
You articulate so beautifully Jane.
We are listening.
x x x

Sharron said...

Always in my thoughts and love to you all...

Anonymous said...

Hi Guys

First of all Meg you look great. Really interesting what you have just said about anger Jane. My big boy was very angry for a good few months after his operation. He hasn't endured anything like Meg has but boy volatile was an understatement. It was really difficult and I was at a loss, nothing worked to take the anger away. I had never seen him like that. We have got there now but it was a struggle.

I guess for kids not only do they have to deal with the fear,anger,depression,pain etc as an adult would, but they are missing crucial parts of growing up. When they are better they are thrown back into life, so distanced from their friends because of their experiences and also lacking experiences they should have had at their age. Take some teenage hormones and volatile is an understatement and it is so understandable. Funnily enough when Nic became like that I found it intolerable.

As parents we have cared for them and suffered watching them suffer and it doesn't make sense at the time that we become targets for their hostility. Yet when the anger subsides it all becomes clear.

Yet they do bounce back, these kids are absolutely amazing. She will come through the anger and try and take some time out for yourself.

Kate,Terry,Nicolae,Anna & Ben