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?!

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...

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 impression of stoical gratitude and forebearance, inside I'm desperately trying to prevent my true feelings of stroppy petulance leaking out all over the place. 

Mostly I can deal with it, tune it out, get on with it and accept the whole package of being a patient with a lot more graciousness than I felt today, but sometimes, just sometimes, it really gets to me and I want to stop playing this game, this lottery game of fear and uncertainty called cancer. Then I remember that this is just the way it is, there won't ever be a way to get off this particular merry-go-round, and life is a bitch. 

I'm normally much better at tackling things than I am today, I don't normally do low, I don't usually let things get to me like this. It wasn't anyone's fault. The hospital staff were perfectly pleasant, in fact the Consultant I saw was completely lovely, and even gave me some really encouraging news. It was me. Today I struggled to do positive, happy and upbeat, I failed dismally at looking on the bright side or finding something absurd about the whole thing to laugh at, I just didn't do the whole patient thing well at all. 

It was a test day rather than a treatment day. I was with the clinician who conducted the test for nearly an hour, in very close, bodily contact as they have to dig deeply into my flesh with a probe and drag it to various points, each time digging harder until I wanted to scream with the pain. Maybe I'm just a wuss. I was never told her name, even though she knew mine. I had to undress, and she couldn't find the surgical gowns to at least give a pretence to modesty and dignity. I was half-naked, revealing the ugly disfiguring shark-bite scar where a breast used to be, while she rummaged in cupboards looking for the missing gowns. That hideous twelve-inch scar that scooped all the flesh out right down to the breastbone and rib-cage that even now, nearly two years after surgery, I can't face in the mirror without dissolving into flood of tears. 

Eventually I was handed a gown, but by then it was too late, I would have to spend the next nearly-an-hour swallowing hard to stop those wretched tears from revealing my true vulnerability. I had to lie, stock-still, on the bed, all the time trying to tune out the joint pain that wanted to tear me apart. Hips, knees, back, elbows, wrists, knuckles, they all wanted a pain party today. My surgery has left a legacy of gnawing pins and needles and numbness in both arms and fingers, which was made worse by the permanent nerve damage caused by chemotherapy. Lying still for what seems like forever means the pins and needles fizzle away like crazy until it feels I'm on fire. I began to think I would never be able to move again.  Maybe I've just got a low pain threshold. 

Every now and again, I was asked to take in a slow deep breath and hold it. It would be so helpful if clinicians would remember to tell you when it's OK to breathe out again, but they often forget. Today I thought I was going to suffocate several times over. There were curtains around the bed, but they didn't quite meet in the middle, and directly opposite there were staff lockers, and it must have been staff break time, with me and my scar providing the peep-show entertainment. 

Normally, I manage to keep a perspective on things, normally I just remind myself how lucky and blessed I am to live in a country with free health-care, and at a time when the treatments on offer will keep me alive for longer than has ever been possible before. Not today. Today I was pissed-off, resentful, miserable and withdrawn. 

Being a patient is so much more than just turning up and letting them do whatever has to be done in terms of tests and treatments. The psychology is complex, and there is a whole set of assumptions and expectations that you feel compelled to conform to, even when you really don't want to. I'm a patient, therefore I'm expected to be weak, passive, willing to co-operate, grateful, gracious and submissive. As a patient it's really hard to hold on to your identity, personality, dignity and privacy. It feels like I'm reduced to a hospital number who has to be processed. It really doesn't matter how kind, compassionate, caring and sensitive the staff are, it's almost impossible to be "me" when I'm with them. 

It's the same in the outside world. Having cancer, particularly the incurable variety that I've got, inevitably sets you apart from everyone else. It's so easy to become defined by cancer, to let who you really are to be squashed and crushed by other people's reactions. I've spent the past nearly two years fighting against these stereotypes, and I've done it fairly successfully so that people know that the "me" is still alive and kicking and living life to the fullest. 

I've kept a blog, starred in the Stage Play of my cancer story, written a book, spoken at conferences, run Laughter Yoga sessions, and kept countless other interests and activities going strong, all at least partly so I remain much more than just a person with cancer. People sometimes tell me I'm marvellous, inspiring, courageous and brave, but I so am not any of those things. I just don't want to be written off, side-lined, ignored, depersonalised or reduced to a pathetic shadow of a person. I want to be engaged, dancing, laughing, involved, enmeshed in life, because that way, I'll stay alive in the only way that matters. I don't want half a life, I don't want to be passive and poorly and get smothered in sympathy. I want to be me.

Sometimes, just sometimes, the facade drops and I'm left exposed, so exposed that even I have to see what's really going on. I have cancer. It's incurable. Hospital tests and treatments are now, and will always be an integral part of my lifestyle until the day I die. 

Cancer has robbed me of energy, cancer brings me low when I look at the To Do list and the dozens of little tasks that have been left undone around the house for months, and the admin mountain and the washing and the keeping the kitchen and bathroom clean, and I know I just can't do it all any more. The exhaustion. The bone-tiredness that descends like a cloud and I fight it like hell. The running on empty. Cancer has taken so much and will continue to want more and more. I will not let it take away the "me" though. I will not be crushed under the weight of this awful disease.

I will not be patient, even though I have to learn to be a patient. I doubt I'll ever be a good one though.

Saturday, 29 March 2014

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: 


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?