Friday, 15 February 2013

Seminar



Lately I've felt like I'm in a constant state of anxiety and find myself walking away from every conversation i have with anyone, paranoid that I said the wrong thing, bored them with my problems or bought them down from my demeanour. I feel like at times Im going crazy. Awful.

Last night danny and I went to a seminar on brain cancer set up and organised by the Telethon Adventurers. From the moment we walked into the building I felt my anxiety set in and as we approached the crowded room I felt like I was in a state of panic. On the outside I smiled and said hello to people I knew from the ward but on the inside my anxiety was at an all time high. I wanted to run out of there and get in the car and go home. Of course I didn't and was thoroughly relieved to be sitting in a seat watching the presentation rather than talking to anyone. Stupid I'm sure, as I was amongst people who were also parents of children with cancer but I couldn't stop it happening.

The presentations by all the specialist were confronting but informative and even though it was difficult to watch, listen and take in, I'm glad we went.

We were informed that childhood cancer is rare. 1in 300. That childhood cancer is nothing like adult cancers. It's treated different, the reasons for getting it are different and so on. Adults don't get childhood cancers and children don't get adult cancers.
They are completely separate and really should have a different name to save confusion.

A lot of scans were shown, diagrams and graphs of statistics. Line graphs of survivors, often measured in months rather than years. each line on the graphs ended at points and left you wondering, what happened after that? Although, deep down knowing that answer. The knowledge presented to us was a reminder of what we are facing. it was very, very sad.

There was good news with the studies and the progress they are making. Even better news that they are now going to collaborate with all their studies, do the same trials etc and hopefully reduce the time to making new discoveries of new treatments. Lets hope so.

They also informed us of new discoveries through gene research on childhood cancers. that childhood cancers are (now i know I'll probably repeat this not quite the same way i heard it but i will give it my best shot), one specialist talked about the causes of childhood cancer that with new gene research it comes down to genes. Not environment, not diet, not whether or not I immunised my child and whether I took enough folate when I was pregnant or how old I was. None of that. None of the things that people have suggested to me in the past. That was really comforting to me that it wasn't anything I or we did. Deep inside I knew it wasn't anything we did, but I still needed to hear it from someone who studies this topic, lives and breathes it and knows what he's talking about. I walked away feeling 100% confident that it wasn't anything we did or didn't do and that was a good thing. This specialist went on to say however that they have also discovered correlations between childhood cancer and birth defects. That their findings show children with cancer often have a sibling with a birth defect. And that sibling with the birth defect has a higher risk of getting cancer also.
That may not mean much to most but to us that information hit us like a tonne of bricks. Luke, Jayden's brother was born with a birth defect. Enough said.











- Theres a saying that goes, "you never really know what you have got until its gone". knowing we could lose Jayden makes us realise how precious he is. His every smile, laugh, tear, cuddle, step he takes, word he speaks is more special than ever before. being in his company, sharing his life is pure joy.
I now look at my other son in the same way. Although I have always treasured all my children deeply. I now treasure them even more.
now I know I'll watch luke like a hawk like I do Jayden for any signs of anything. That although I was vigilant before I am even more so now and for Layla too.

I'm exhausted. Tired of being worried. Tired of being sad. Tired of getting up everyday and getting through the day. I love my kids so much and I'm hurting so bad right now it sucks.




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