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.
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:
And just for good measure, one last photo, to quote Eric Morecambe, of the book wot I wrote.
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.
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.
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!
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 Wordpress.org 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.
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
— Marie Ennis-O'Connor (@JBBC) May 5, 2014
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!
Friday, 11 April 2014
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?!
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?!
Tuesday, 1 April 2014
Coke Floats & Chemo: Being a cancer patient
Coke Floats & Chemo: Being a cancer patient: Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right imp...
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