Monday, 5 May 2014

Coke Floats & Chemo: Dancing not Drowning

Coke Floats & Chemo: Dancing not Drowning: Writing the book was the easy part! It's what comes next that is complicated, full-on and the real hard slog. There's no point writi...

Dancing not Drowning

Writing the book was the easy part! It's what comes next that is complicated, full-on and the real hard slog. There's no point writing a book if nobody reads it, not because it might be a rubbish book but because they never got to know about it at all. So it's the PR, the internet marketing, the social media presence that's where the real work happens, and there's no other option but to jump straight into the deep end and hope to goodness that you don't get drowned. 

It's fun though, but very full on. I did nearly drown for several days when I was trying to create a website from scratch. Trying to get and the website hosting service to link up and make friends was far more than my little brain could cope with, and I was climbing walls in tearful frustration for days. Then I found the answer - they had sent me an email days beforehand which I had thought was spam because they unhelpfully didn't mention either of their organisations' names in the email title. With 21st century technology, it's always those tiny little things that just don't quite meet up that completely that do my head in. 

So, I've now got the beginnings of a website. Not the best one in the world, but I've never been prouder of anything because it really does represent blood, sweat, tears and goodness knows what else. It's also a "work-in-progress" - there is stacks of room for improvement, but if you'd like to see it before it becomes simply marvellous (ha ha ha) here's the link :The Special Parent's Handbook Website.

I've also set up a Facebook Page, again called The Special Parent's Handbook, and here's the link to the Facebook Page.

Then yesterday I did another You Tube video. Hilarious. Not. It took about 8 takes with WM creatively constructing another tripod from all sorts of things around the house. if you haven't seen the blog post about his previous attempt here is it: How Not to Film Videos .

It's worth a peep if only to see the photo of the bonkers tripod itself. We managed it in only 8 takes this time, mostly techno nonsense but Take Number 7 is a classic - just as I was saying goodbye after a word-perfect performance, the best one I'll probably ever manage, literally 2 seconds before the very end, Adam forgot we'd told him what we were doing and he barges in through the door only wearing pyjama bottoms and calling "Mum, where are you?" rather loudly. We have it on camera, including the bit with me failing to maintain my professional dignity and losing it completely.  WM and Francesca are threatening to post just those few seconds on Facebook. It really is very funny now, but I couldn't find a funny side at the time. 

In the video I read a bit of the book, an extract which looks at how frustrating it can be when you are a medically-savvy parent of a complex needs child during the Doctor's Round on a hospital, when it's sometimes hard to have your concerns taken seriously and listened to properly. 

Me reading from The Special Parent's Handbook

The best bit of the whole new world of publicising the book is the amount of goodwill and friendship there is online. People I've never met are banging the drum for me, holding my hand through all the stuff I'm such a novice about, and the warmth and enthusiasm for the project is simply astounding. 

I can barely bring myself to watch the video, I just cringe at both the way I look and sound, but then one completely lovely "virtual friend" sent me this tweet last night which I absolutely love to bits! 

@SpParentsHbook definitely cute.. and cuddly.. I wanted to get a hug from you :-) You looked like just the mum everyone would want to have x

There's still so much to do, and I've barely started the whole publicity and internet marketing stuff yet, and already the book is making loads of pre-order sales on Amazon. They stock 20 million books, and even though my book isn't actually being launched until the 2nd June, pre-orders are selling so well that it's spent a lot of time in the top 10,000 most popular books, and it even got to rank at being the 2,740th most popular book on the whole of Amazon for a few hours the other day! OK so it's not in the top ten yet, but I was still leaping up and down with excitement. Today, I even got an email from Amazon to order a consignment of books from me, and I wanted to spend the whole morning singing and dancing about it.   

It's also lovely to have an Amazon page and an Author's page - I can't quite believe how much fun this can be sometimes! If you want to have a look, here's the link: The Special Parent's Handbook Amazon Page.

Oooh, I've just realised that the past few days of tearing my hair out over websites and technology must have paid off - I've never before had so many links, a You Tube video AND an embedded tweet in a blog post before. Best of all, I haven't mentioned cancer once, even though it's the horrid PET scan day tomorrow.  I'd better go off and dance around my kitchen again in celebration!