Saturday, 21 June 2014

Coke Floats & Chemo: The book wot I wrote

Coke Floats & Chemo: The book wot I wrote: It's a strange old feeling writing a book. Even two weeks after publication of my book, "The Special Parent's Handbook", i...

Friday, 20 June 2014

The book wot I wrote

It's a strange old feeling writing a book. Even two weeks after publication of my book, "The Special Parent's Handbook", it's all still quite surreal to pick up a paperback and see your name on the front and your photo on the back. I'm still getting used to it all.  

People are being so kind though. I've had dozens of messages, being told that reading the book has already made things easier in homes all over the place, hearing that my words have given other parents the confidence to stand up to professionals, or to trust their own instincts, or to chill a little and have more fun.... really lovely things to say. Clinical staff have contacted me to say they've learnt loads too, and that they are approaching their jobs differently as a result. Sometimes, the lovely people who have bought my book even send me a photo of it once it gets to their house. Here are some of them. 

My book does seem to be having an effect on people when they read it. The thing is, I'm far too close to it all to be able to understand what effect it's having or why. Maybe I should just relax and be pleased that it's making some sort of difference, even if I can't fathom out how it's happening. 

The PR side of things is painstakingly slow, and never ending. I have lists of people to email about my book, then sub-lists, then category sub-sub-lists, it gets to the point where even I don't understand them. 

However, I have had one simply marvellous review, which totally made my week last week, and it's from a very respected Magazine indeed. The Nursing Times, no less. It was beyond fabulous, so great, here it is again.

If the print is too small to see, here are some of the lovely things they said about the book: 

 "Painfully honest", "Deeply affecting", "The chapters covering each area are excellent", "a fantastic job" "fills an enormous gap in the market", "an invaluable resource", "offers tremendous insights". 

I really couldn't have asked for any more. 

So, that got me thinking. The nurse who wrote the review is obviously one of those who "gets it", but she is also the mother of a special needs son, so it's easy to see why she did. I wrote it for people like her, for parents, and for professionals, who care for disabled or seriously ill children, I didn't write it for journalists. I wrote it for parents, struggling to come to terms with how, in a moment, their whole family life has irrevocably changed because their child has been given a devastating diagnosis. I wrote it for the professionals who work with these families, so they will understand some of the relentless heartache these families bear. I wrote it for my younger self, when I was frightened, isolated, exhausted and bewildered, and didn't think I'd be up to the job of caring properly for my son, Toby, and later, his brother and sister, when they too, were diagnosed with various conditions and illnesses. 

I wrote about how to cope with stares in the street, how to make sure none of your children are left out and there's enough love and support to wrap around the whole family, how to cope with the multidisciplinary meetings, and the never-ending mountains paperwork, and the constant battles to make sure your child gets the help and care they really need. I wrote about everything I knew, everything I'd learnt, everything I hoped might make somebody's life just that little bit easier. At the end of every chapter, I packed in Tips, Tricks and Strategies, all the crazy, off-the-wall solutions to problems our family invented as we muddled along. There are bits in the book that make difficult reading, because they are so raw and painful, but equally, there are other bits that will make people snort with laughter. 

So, instead of trying to court the journalists and the national press, I need to find the people who really matter, the parents who are having a hard time right now, and ask everyone I know to help me find them. 

I have a Facebook Page. If you are on Facebook, it would be great if you could like it. It may mean that someone in your Facebook circle who really needs to know they are not alone in all this might also find out about my book just at a time they need it the most. Here's the FB page link: 

I'm also writing to every hospital, but it all takes time. I'm writing to every charity I can think of, and every special school, but it will take months. If anybody has any ideas of who else I should be writing to, please let me know. 

I've already had one major success. I sent Great Ormond Street Hospital a copy of my book, and I got a lovely letter back from Liz Morgan, their Chief Nurse, who called it "An excellent reference guide for any parent". Jim Blair, their Nurse Consultant for Learning Disabilities, is also championing it. So far, they have ordered 30 copies, one for every ward, so that every single parent with a child in GOSH can read it. I spent a whole lovely day there, and had a really warm welcome and met some really genuine people. I was there to run sessions with their staff and parents about bridging the "them and us" communication gap. The sessions, too, were simply great, everyone was just fabulous, and committed to working together to make things easier all round

I met their Head of Operations, who was every bit as behind the book as Liz and Jim are; he has agreed to stock copies of "The Special Parent's Handbook" in the hospital's own shop from Monday, with £3.50 from every book sale going toward Jim Blair's innovative work to improve the care given to children with Learning Disabilities and their parents. Even better than that, the book is now going to be where there are also parents and staff who really need to know about it. I've just got to do more of this, getting the book to the heart of where it belongs, up and down the country. 

Three weeks ago I was nervous about the book being published. Suddenly, it was the eleventh hour, and it was too late to unwrite it, Amazon already held copies. What if nobody liked it? What if it's rubbish? What if I've been too open? It's still a bit surreal that total strangers are reading about our family life, warts and all, but now I have the world's most famous children's hospital cheering on the book on my behalf and I am humbled beyond belief. 

This blog used to be about my breast cancer. Then it was about the stage play. You have been with me when we discovered the cancer had spread to my spine, and that I had lost the battle with the big "C" to some extent. Yes it's incurable, but that doesn't mean I can't carry on living. Who knows how long I'll be here, now that I'm Stage IV cancer it's probably not as long as I would have wanted, but that doesn't matter. What matters is that every day counts. 

Over the past year or so, since we nearly lost Toby when he was seriously ill last summer, the blog has become much less about cancer and much more about my children, learning disability, writing a book and all sorts of other things. I think it's time to step back from this Coke Floats & Chemo blog, and concentrate all my efforts for the time being into making sure the book gets into the right hands. 

I'll still be writing, though. I've now got a website with a blog on it too, and it would be lovely if you can join me there. The format is different, on the right hand side there is a list marked "Posts", that's really the blog. It's got some very thought-provoking articles on it already, and you can also see some adorable photos of the children when they were growing up. Here's the website link:

So, for now, it's see you soon, not goodbye, because I may well come back and write like crazy on this blog too. Meanwhile, it would be lovely if you come and say hello to me on the new blog. For the moment, though,  I can't stretch myself too thin, and also for the moment, the cancer is in a very good place, filed at the back of my mind while I get on with living. 

If you'd like to buy the book and you can't get to Great Ormond Street easily, it's available from Amazon, both paperback and on Kindle. Here's the link to the Amazon Page:

If no link appears it may be due to your AdBlock settings

And just for good measure, one last photo, to quote Eric Morecambe, of the book wot I wrote. 

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! 

Thursday, 24 April 2014

Coke Floats & Chemo: Two boys, a book, a baby & a birthday

Coke Floats & Chemo: Two boys, a book, a baby & a birthday: It's been a great week for me, and I haven't bumped down to earth yet! Firstly I'm a Grandma. Here's a picture of my baby bo...

Two boys, a book, a baby & a birthday

It's been a great week for me, and I haven't bumped down to earth yet! Firstly I'm a Grandma. Here's a picture of my baby boy with his very own baby boy, and every time I see them together I just nearly burst with pride.

Then it was Toby's 20th birthday, and he came home for 2 whole glorious days and nights and we threw a Birthday Party for him too. He moved into the lovely Residential Care Home across the road 8 weeks ago, and although we see him nearly every day, he has struggled with homesickness, and there have been some heartbreaking moments which have been really tough. 

About a month beforehand, someone told him he would be coming home and that it was his birthday soon. Ooops. Toby is the undisputed Birthday King of the Northern Hemisphere, but with his severe learning disabilities he simply cannot comprehend time and waiting. He got very stressed, and wanted to come home for his birthday every single minute of every single day for the whole next four weeks. His teacher at college was brilliant, she made a calender with little pictures of him in his new house on velcro, one for every day, like a non-Christmas Advent Calender. Then there were two pictures of  "Mummy's House" at the bottom of the calender, and he had to pull each picture off, one by one, every night at bedtime to help him understand the timescales involved.  

This helped enormously, but it was still a very long few weeks to keep him happy when all he wanted was "Presents", "Party", "Birthday", "Candles", "Cake". He doesn't have many words, he can't have a conversation, but when it comes to birthdays his vocabulary is as good as anyone else's! 

Here is a photo of a very happy Toby at our house on his birthday. Adam is holding onto him tightly so he didn't set his hair alight when blowing out the candles. You may also notice our family tradition - a cling-filmed cake. This ritual started many years ago, when Toby, who blows out candles so magnificently well and with such gutsy enthusiasm, would always cover the cake in so much saliva that no one would want to have a slice.

We were all rather concerned about how Toby would react about going back to his new home after his couple of days at home. The manager of his care home came up with a lovely idea - they would have another Birthday Party for him the minute he went back ....... smart move! 

Best of all, Toby seems to be in a completely different mindset now. He's been home to Mummy's House, he knows that he can come home again, he knows that everything is exactly in the same place just as he left it, and now that he's back in his new house, he's just somehow loads more settled and happy. So it's taken a while, and I can't be sure that we're definitely out of the woods entirely, but he seems to understand and be fine about his major life change. I can't tell you how proud I am of him too. His resilience, good humour and resourcefulness in coping with major changes puts most of the rest of us in the shade. 

Then, on top of Adam's news, and Toby's successful settling in, something else has happened that is like the icing on the cake with the cherry on the top for good measure.

The Special Parent's Handbook is available to pre-order on Amazon already! 

It's really exciting to see the book cover, my name and my very own Author's Page, there for the whole world to see on Amazon. It was hard to stop grinning for a day or so when I first saw it there, and my grin got even wider when I realised that it's selling really well already! 

If you want to see it there yourself, here's the link to the relevant Amazon page:

The Special Parent's Handbook - Amazon Page

So, who should read it? 

I've written it primarily for any parent whose child is different. Those differences may be disabilities, serious illnesses or a child who is a little bit quirky. All three of my children have disabilities, and one of them had a series of life-threatening illnesses. Along the way I've learnt so much, and I've basically written the book I wish someone had been able to give me all those years ago when I was struggling to cope and close to the edge.

 In the book I share the strategies that have helped me cope with the relentless 24/7 round the clock caring on very little sleep. I also share the coping mechanisms I eventually learnt to adopt so that I was no longer crushed and undermined by every professional at every meeting. These are the the very professionals and the endless number of mindless meetings that were supposedly there to help me manage, but which often, instead, just piled on intolerable extra stress and ate away at my confidence. I've written about how to tame and harness the never-ending related paperwork that goes with the territory of children with disabilites. Most of all, I put the children at the very centre of the book, because above all else it's all about them, and  how to make sure all your children have the happiest possible childhoods as well as how to get the very best services for all our children. 

I've had to learn the hard way about bringing up children with difficulties, and with no rule-book or guidelines to help me know what to do next and how to do it, I largely made it up as we went along. It was seldom easy, but we still had a lot of fun on the way through their childhoods. It was tough, and with the public spending cutbacks already having a severe impact on the vital support that families like ours rely on,  things can only get harder for this next generation of parents. It would be great if reading my book could take the pressure off and lighten the load even a little bit. 

I think you'd also enjoy it if you work with children with disabilities. I hope you'd learn a little too, and get a good insight as to how very bleak things can sometimes seem behind our closed doors, even when we are determined to put the brightest of faces on our circumstances. I've been very honest about how the services designed to help often simply don't join up, and how tiny little mindset changes could make all the difference. So often it's not about spending more money. It's often the smallest no-cost or low-cost little tweaks that can transform lives and make everything easier, but no one ever thinks of them, or thinks to ask those of us on the front-line for our thoughts and experiences. 

The book is also the story of my family and what's been thrown at us and how we've coped. I hope there are funny bits in the book, I find it so hard to be serious for too long, and sometimes the humour just creeps out onto the screen all by itself while I'm typing. 

A handful of people have already ready it, and the feedback has been incredibly encouraging. Rosa Monckton read it and has written an amazing Foreword in the book. Her writing is passionate and powerful, and Rosa goes so far as to call the book "A story of our Time". Rosa has been so encouraging and supportive throughout, and she simply couldn't have been kinder to me. 

There's still a load to do before the book is available to buy. I'm trying to get my head around setting up my own website following a step-by-step guide I bought on Kindle. I've somehow developed a completely pointless daily routine in trying to get the website up and running, whereby  I stare at the screen, stare at the Kindle, then stare at the Keyboard, then I repeat these three steps all over again, hoping against hope that something will happen. Nothing's happened yet except for another layer of confirmation that I'll never be a techie. 

Then there's the whole PR stuff to do, and Rosa has very kindly offered to help me out with that too. I'm a total beginner, but  I'm actually quite looking forward to this aspect of the whole thing. I've already got a few definite interviews in the bag and I haven't even sent out one press release yet never mind a review copy of the book itself. The review copies of the book itself should be here by the end of next week and then they need to be sent off to journalists and the like who may be interested in the book.

Somehow I have to make the website come together before I can move onto the PR side of things, so hopefully the penny will drop and I'll suddenly master the language of gobbledigook. 

Finally, it's setting up a Facebook Page especially to support the book, and making a really important decision.  Should I have a Book Launch Party, and if so where should it be? It would be loads of fun and a great way of saying thanks to all the people who have helped, but can I afford it and would it actually help to sell more copies of the book? 

So altogether a wonderful week, even though it's nearly that miserable "remember I've got incurable cancer" time, with a PET scan looming followed by those horrible few days when I convince myself they'll have found I've now got cancer everywhere. I successfully manage to tune out the whole cancer stuff most of the time, but the reality is that it's lurking there in the shadows of my very being, and one day it will decide to rear it's ugly head all over again and come out to play Russian Roulette with my life. I just hope it gives me time to write a whole stack of books before it starts taking me over. Fingers crossed.

PS Francesca wants the world to know that tomorrow is a mega day for her too. She is going to see McBusted at the O2 arena. Busted and McFly were her first loves, and 10 years ago, not only did we go to Wembley to see them when she was only 11, but we also met them for real when a neighbour managed to get us tickets for SMTV Live, the Saturday morning kids show. I was a grown-up woman, already well past my prime, but I went just as jelly-kneed and star-struck as any of the 11 year olds there watching with me. Tomorrow, Adam's going with her instead of me, because I'm just not well enough anymore to be a proper teenybopper, and anyway, I'm saving myself for The Osmonds in the summer.  I'm not sure Adam really knows what he's let himself in for, but I just hope they have a fabulous time out together. They certainly know all the words because they've been singing their hearts out to all the songs all the time I've been writing this!