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Dealing with Retinoblastoma

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Back to the book chapter summaries

January 25th, 2007 by janet

Chapter four of ‘Beyond the Red Door’ - Invisible Scars - ended with my desire to own a black horse. And that’s how the next chapter starts, with me finding the perfect horse for me.

‘Strong Bonds’ - Chapter 5 - is about the special relationship I had with Ben, the horse I bought a few days before my last high school exam. In almost every respect, Ben was wrong for me. Firstly, he wasn’t black, unless you looked at him from a distance; secondly, he was an ex-racehorse - I’d vowed never to buy one of those; and thirdly, I couldn’t ride him. But he was a real people horse, very intuitive, and I loved him dearly.

I had to part with Ben, for what I thought were all the right reasons. But the result was terrible, and I don’t think I’ve ever resolved my guilt over what happened. The bond between us was so strong, and I’ll treasure the memories I have of him.

But you’ll have to read the chapter to find out more.


A post script to my last post

January 11th, 2007 by janet

My belief that adversity makes us stronger is reinforced by some research done by Dr Nick Bayles, reported in Paul and Jenny Geelen’s blog.
Dr Bayles talks about planes taking off into the wind, which reminds me of a quote I love. It’s by Churchill, and it says, “Kites fly highest against the wind, not with it”.


There is life after retinoblastoma

January 11th, 2007 by janet

I was talking today with someone who was wondering whether to offer my book, ‘Beyond the Red Door’, to parents of a very young child with bilateral retinoblastoma. Their little girl has just had one eye removed and extensive treatment to the other eye. The treatment has been successful and it looks like her sight has been saved.
The concern was how much information the parents could handle at this very stressful time. And it’s a good question. My parents went through hell when I was diagnosed. Things moved very quickly and they had no control. How would they have felt knowing that retinoblastoma didn’t just end when the treatment ended and the tumours disappeared?
When thinking about this, I went back to the main message behind my book. And that is, there is life after retinoblastoma. I want parents of kids with RB to know that living with vision loss is ok, and even living with total blindness is ok too. I’ve had both, and actually found that since I lost my sight totally, my life has improved out of sight…sorry for the pun.
Yes, I do make people aware of the links RB has with secondaries later in life, but it is only a possibility. It is not a definite. I know adults with RB who are much older than me, and they’re fine. I think my reason for mentioning it in my book is to inform parents, so that they can act if they see anything out of the ordinary. My parents would have preferred knowing this extra information as they watched me grow up. So I can only hope that other parents would see it the same way.
But as I said, my main message is that kids who have had RB cope really well with limited vision and blindness. And the big difference is that the treatment these days is so much better than in my day and there are less side-effects.
Here’s something to make parents feel good. I’ve heard it said often - from doctors and other RB survivors - that kids born with RB are more intelligent than others. No idea why they think this, but I’ll buy it!


Read the beginning of ‘Beyond the Red Door’

January 10th, 2007 by janet

It finally hit me last night - ok, so I’m a slow learner - that just summarising each chapter of my book isn’t enough. I asked myself what I’d like to see when I go to an author’s website, and the answer was: I’d like to read some of their work.
Ok, so at last, the penny has dropped.
Now you can read the beginning of Chapter One of ‘Beyond the Red Door’ here
I hope you enjoy it. I’d love your comments, especially if a snippet of some other chapters would be useful.
You can also read a sample of my children’s fiction writing at my other website, www.janetshaw.com
Enjoy!


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