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...

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:  http://on.fb.me/1juTska 

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: www.yvonnenewbold.com

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. 

Coke Floats & Chemo: The Book Cover Preview

Coke Floats & Chemo: The Book Cover Preview: The book cover is designed, and the entire book thing suddenly feels a whole load more real. It will be on sale in about 8 - 10 weeks, with ...

The Book Cover Preview

The book cover is designed, and the entire book thing suddenly feels a whole load more real. It will be on sale in about 8 - 10 weeks, with the first advance copies in my hand in about 4 week's time. Many thanks to the photographers, Richard Bloomfield who took the shot of Toby in 1996, and Rachel Raphael who took the other two gorgeous photos. The impression we've tried to create is to show that, against all the odds, Toby made it all the way through childhood. Even though it was sticky, he was and still is happy. The shot of him covering my face is to demonstrate that he can now do some of it without me, and that's how it should be. Independence is what every parent wants for their children, even if Toby, with all his difficulties, is developing a different version of independence.

Francesca and Adam, whilst very happy to be included in the book itself, were absolutely adamant that they were not going to have their photos on the cover! It's such a shame, because they are both every bit as gorgeous looking as their brother, Toby! Hey ho, never mind! Maybe the next one, eh?!

Coke Floats & Chemo: Rattling Cages

Coke Floats & Chemo: Rattling Cages: Yesterday, I pressed "send" on an email, and in so doing, I'm handing control over to a whole series of people who will set in...

Rattling Cages

Yesterday, I pressed "send" on an email, and in so doing, I'm handing control over to a whole series of people who will set in motion a chain of events that means that, in a few months time, nothing will ever be quite the same for my family again.

The book I've been writing for the past four months is finished, I've chosen the photos for the cover design, and at some point during the summer, I will be a published author. Exciting beyond belief, but also daunting and a little scary too, because this could be a very controversial book, and there will be many within the elite senior management and political ranks who will wish the book had never been written, and may do all within their power to discredit and silence me. 

Luckily, mine is not a lone voice. There are many of us coming together, seeking a better way forward, a more accountable approach, and a kinder, more humane way of doing things than the current systems in place within the NHS, Education and Social Services. Initially we were all lone voices, swimming against the tide, with nobody listening. Twitter has helped many of us find each other. Each one of us with important stories to tell, or with innovative new ways of doing things already being implemented, or with our individual visions of how the future should look like for supporting the most vulnerable people in our society with compassion, dignity, respect and care. 

If you are on Twitter, you might like to follow some of these inspirational voices, all doing their own bit to make the future a better one for everybody: 

@patientmemoirs @DrUmeshPrabhu @NHSwhistleblowr @meandme10 @KayFSheldon  @HelenHSAUK 
@wwwframeworks4c @WhoseShoes @JusticeforLB @curetheNHS @willcpowell @stopcoverups @archangelolill@suzancollins @GrangerKate @AlysColeKing 


There are many more, all with their part to play in rebuilding things better, if only we are allowed to be heard. 

The book I've written, called "The Special Parent's Handbook", is written primarily for parents who are at the sharpest end of the best and the worst that statutory services can offer. They are parents whose children are disabled or seriously ill. I've tried to write the book I wish I'd been given on the day I was first told I had a child with serious disabilities. When I was first thrust, completely unprepared, for a lifestyle so different from anything I had ever envisioned. 

At first I was overwhelmed with a what seemed like a blanket of despondency and fear. There was no set of instructions, no one I knew who had ever had to cope with anything like I was facing, and I had no clue of what to do or where to go for help. Meanwhile, it felt like every clinician, therapist, specialist and social worker was queuing up to strip away yet another layer of privacy and self-confidence. Everything I knew to be rock-solid about the world was collapsing around me, and I didn't have a clue how to be a parent to a child with complex needs and profound disabilities who would spend most of his next six years in hospital fighting for his life. He was never expected to survive more than a few short weeks; in three week's time we will celebrate his 20th birthday. 

On the way through his childhood, stumbling a lot, falling often, but sometimes getting it right, it was discovered that his older sister and his younger brother both had a whole list of disabilities of their own, completely different to his. Their conditions are almost invisible, yet have a significant impact on virtually every aspect of their daily lives.  

Over time, I learnt a lot, and as a family we started to get it right much more often than we got it wrong, and it's now time to pass some of that learning onto other parents. There's nothing quite like being diagnosed with incurable cancer, like I was a year ago, to make you realise there's no time to waste in getting things like this done and dusted. 

I've tried to write a comprehensive parenting guide covering all the stages of childhood and virtually every eventuality along the way. In the end, the hardest bit was deciding what not to included, because if I'd put in everything it would have been longer than War and Peace.

There are chapters on getting the news and absorbing it without losing the plot, how to keep your own relationship from becoming a casualty of the untold stress, how to handle long hospital admissions, endless out-patient appointments and all sorts of other meetings too. Some chapters deal with finding ways to give all your children a happy childhood, packed with ideas of things you can do even when you can't go out and about or on holiday or take your eye off the child that may stop breathing at a moment's notice. Other chapters deal with our Education System and how to get the very best deal for your child, and Social Services, about how they can help but how, like every other service, the help they can offer says much more about funding, budgets and politics than it does about the help your child actually gets. A lot of the book looks at how you slowly become the only true expert about your child, and the frustrations that can cause when no one will listen to you, but also strategies to give your feelings the best chance of being heard. There is also a chapter on food issues as well as one about coping with meltdowns. 

All through the book I've put a Tips, Tricks & Strategies section at the end of every chapter. A lot of it you'd never see anywhere else, because they include some of the oddball quirky solutions we've had to make up as we went along, sometimes as a matter of urgency. It's very much a hand's-on, practical guide from one parent to another, and there are a few laugh out loud moments too scattered along the way. It's honest, and I try to tell it as it is, highlighting the appalling errors I've sometimes made as we muddled through. That's often when the best lessons get learnt. An academic, preachy tome this is not. 

Inevitably, the readers will learn a lot about our family too, since I've used various real-life moments from our house to illustrate things in the book. They won't be able to fail to notice how incredibly proud I am of all three of my children, now on the brink of adulthood, and all that they have overcome and how much they have achieved, against very considerable odds. 

There's also a fair amount of criticism about the services that too often fail families like ours, and how these clunky organisations often don't support the individuals who work for them in being able to reach out and offer the help we need. So often small changes would make all the difference, low-cost or no-cost solutions, sometimes these solutions could even result in the saving of thousands of Public Sector money. All it would take is a tiny shift in attitude sometimes, or a slightly different approach, and everything would join up and work so much better. 

A handful of people have already read the book, including some professionals and some "Special Parents" too. All of them have said that this book should be a "must-read" for everyone who works with anyone with disabilities. If they read it, I'm pretty sure some of them won't like it, but I hope I've been fair, pointing out the inspirational, devoted care we've received as a family as well as some examples of the less good. Some of the professionals who have already been kind enough to read it for accuracy have told me that they have changed their approach already as a result of what they learnt from the book, which was lovely of them to say and made me feel really encouraged. 

Another person who has been really encouraging all the way through is Rosa Monckton, who is also an expert in this field since she is a mother of a daughter with Down's Syndrome. Rosa is also a tireless campaigner for improvement in the services currently on offer to children with disabilities, and has presented some very hard-hitting TV documentaries on the subject. 

Rosa has very kindly written the Foreword to the book. Her words are very powerful indeed, and I am so grateful for her enthusiasm and endorsement of this project. In her Foreword she also says that it should be read by all professionals working with disabled people, and she goes so far as to call my book "A Story of our Time". 

So, it's all out of my hands now. We'll just have to wait and see what happens when it gets published. There are bound to be detractors, but I'm crossing my fingers that they will be outnumbered by the people who read the book and can feel the spirit in which it has been written.

Just because I've sent the book off doesn't mean I can sit and chill on the sofa until it gets published then swan about signing books and smiling when it comes out with a glass of champers in my hand. That would be nice. 

Instead, I've now got to focus this technophobic brain of mine into mastering how to design a website, a Facebook page, and sort out all the PR for the book too. There's no point in writing a book if no one knows about it to buy it. I've being interviewed by a journalist who writes for The Guardian on Monday. We'll be talking about another aspect of disability for a different publication, but she has already asked for an early review copy of the book, and may be able to do a high-profile feature about it nearer the publication date. All good stuff. 

There is also something far more important than any book that I'll be focussing a lot on over the next few weeks, in fact forever. We are only a few days away from welcoming my first Grandchild into the world. A little boy. His parents are very young teenagers, but they have both more than risen to this huge challenge, and despite their tender years, they have the makings of becoming fabulous parents. My little boy, now 16 and a whole foot taller than me, will be a Dad. Both the young parents come from strong, stable, supportive and loving families, and we will all pull together to give this little lad the very best start in life he could wish for. It also means that, despite my less than great prognosis, I will live to be a Granny. 

Exciting times, new life and a new generation. Wouldn't it be just fantastic if this next generation of children grow up with the services properly in place to support both them and their families, and that those services do exactly that?