After Bianca was diagnosed with leukemia, the one thing we really really wanted and asked for was that people stay in touch with their normal news. When you hear the words "your child has leukemia" your whole world comes crashing down around you and time comes to a standstill. In an instant, all the plans you've made, all the ideas and goals you've had - have to be put aside and your life starts revolving around taking temperatures, reading treatment protocol documents, hospital checkups, chemo, side-effects, steroids, more chemo, more checkups, and..., and..., and... And it must be the loneliest, most isolated and exhausting thing we've ever done. And it wasn't just a few weeks, or a few months, no, it turned out almost 2.5 years (or around 830 days) - the first 6 months even going to the shops with Bianca was something that required careful planning because if her levels were just a bit too low - forget it... And she had so many infections resulting in around 117 days where she stayed at the hospital overnight.
Unfortunately for us, apart from my mum and one or two others, we never really had much support. That request of "please keep in touch with your normal news" was completely ignored and it has been years since we heard from some. The telephone didn't ring, we got regular emails from my mum, but not a word from many others, I was even once told by somebody "well it seems as if you are coping, if you didn't cope, then I would be able to support you".
Initially my blog was my lifeline. A place where I could write about what was happening and through my blog I found an international community all walking the same journey. And somewhere along the line, I got a Facebook request to join Facebook. I was sceptical at first - why would I want to use Facebook? And slowly but surely I got drawn in. Facebook turned out to be the normal that we were looking for. The link to the "outside" world - outside and away from the leukemia world. A place where you could get news about what others were up to, perhaps see their photos. We didn't feel so excluded as we've felt after our request to "please stay in touch" was so completely ignored.
And so yes, I must be honest that since that invitation I slowly but surely got "sucked" into the Facebook world - it has been something I have spent an awful amount of time with. At the time it was what I needed, but now that life has mostly returned to normal, it is time for me to take a step back and spend less time with this.
The problem with Facebook is that it is so incredibly addictive and before you know it, it is a habit. Where your fingers automatically type "Facebook.com" when you go onto the internet. So I've made the decision that from this moment I will spend much much less time on Facebook. And so Terence has effectively blocked Facebook at home and we will now be able to spend only a limited amount of time each night and no more.
I think this was a good decision, considering we have a few goals and ideas we are working on that will require more focus and which I will share with you a bit later on.
In some ways the internet and things like Facebook has certainly opened up a whole new world, bringing people and information closer regardless the distance and time difference, but in other ways, I try to remember how we coped without all of this when I was much younger. I actually miss some of those days...