A long way from perfect

It's a scary old thing, this book-writing malarkey, and for several days this week I just convinced myself that everything I had so far written was utter rubbish, and that the whole caboodle was a crazy idea. 

I think part of it is because the book is supposed to be a "How to" guide at bringing up disabled children, which is very much my specialist knowledge since that's roughly about all I've been doing for the past couple of decades, but it still feels quite bold and big-headed to shout out to the world I'm an expert. I haven't got it all right by any means, in fact there are days when I haven't got anything right altogether, and my kids are utterly gorgeous, engaging, funny, well-rounded young people, but they, just like their mum, are all a long way from perfect. 

Quite frankly, nor would I want them to be. How boringly conventional and predictable life would be then, hey? But if people are kind enough to buy and read this book when it's published, won't they be expecting me to be some kind of Superwoman with "Peter Perfect" kids? Hell, no. I really hope not. 

Then there have been other dilemmas. If this book is bought for a young couple who have just been told their newborn baby has lifelong disabilities, I want it to be able to support them and make them feel it's doable and OK. So half the time I'm not putting in anything that might terrify the living daylights out of them, like what it's really like dealing with Healthcare, Social Services and Education. Then if I don't it's selling short all the parents who might be at that stage and simply banging their head against a wall desperate for some ideas as to how to go into those meetings, retain their dignity, say their piece, be heard properly, and come out of the meeting knowing that some good will come out of all that stress. I had a bit of a wake-up call along these lines this week, when two mothers asked for my help about how best to deal with social services. They are not my stories to tell, but if I tell you I was pacing up and down in a fury and they aren't even about my own kids, I think you can imagine just how awful a service they are being offered, or more to the point, not even being offered. 

Then there's the whole isssue of is this a book to tell people how to access services, how to keep your sanity, how to deal with the constant, relentless demands of your child and how to still manage to bring up happy, delightful children? Or is it a chance to tell my story? Well it's supposed to be the first, but using my own experiences to illustrate various points. However, once I start telling our family story, at times I've been guilty of running away with myself, getting completely stuck into it, and producing pages of what can sometimes only be described as a stream-of-consciousness rant. Hey ho again. I need a little sign up at the top of the laptop stating "Shut up, Yvonne, this isn't about you". 

The stories of our trials and tribulations are valid, and stories are a rich part of our culture and actually help people learn and remember stuff, so I'm not talking about taking them out altogether, however, there have been moments when they have become so big and so ranty that they are risking squashing the whole purpose of the book. 

The other problem is that so far, the book hasn't even made me laugh very much. It's all a bit dark and a bit heavy, which just won't do. 

However, the night before last I actually had a chat about all these things with WM and Francesca. They really ganged up and bullied me back into action, but in a very nice, kind, good way. Francesca just said, "oh for goodness sake, Mum, this is only a first draft, you can't worry about the style or substance at all, and it's certainly far too early to even think of editing it yet". Then Malcolm added "Just write and write and write, you can re-work all sorts of bits and pieces, and you keep saying it's rubbish, but the bits you've let me read so far are fantastic!". 

They are really good at this whole thing, the pair of them, so I'm very lucky. They really made me think, and also come to terms with the fact that over the past 20 years or so, I've been running on empty for a lot of the time, turning myself inside out to find more resources I didn't even know were lurking deeply buried within me. Of course, the first time I've ever revisited some of that is going to make me emotional, and there have been some really negative emotions I've had to deal with since I started this project 4 weeks or so ago. Guilt, anger, fear, abandonment, isolation, frustration... to name but a few. So of course they've spilled onto the pages too. It's probably been incredibly theraputic and cathartic, and when I go to edit, I just know the funny side of everything will also be peeping out from between the lines and it will all be great in the end. 

In the middle of all of this, I got some really wonderful, very exciting news. There is a very high-profile, lovely person who has agreed to write the Foreword for the book. I did several hours of dancing around the kitchen very badly with my creaky bones, and I was certainly far too excited to write a word for the rest of the day. Maybe that's what precipitated the crisis of confidence a little bit too - if I could tell you who this person was you'd understand how now I'm really putting myself under pressure because the stakes have been upped quite significantly, and the book is now much more likely to be noticed and taken seriously because this person's reputation will really increase my credibility. So failure is simply not an option and mediocrity just won't do. This book, unlike me and the kids, needs to be as perfect as possible. 

Wouldn't it be great if this book could help parents to understand their limitations better than I was able to, and put strategies in place to take care of themselves years before I ever managed. Wouldn't it be great if they don't get Breast Cancer because they knew not to run themselves into the ground far quicker and far harder than was ever good for me. I'm pretty convinced that God, or Mother Nature, or the Universe or whatever you want to call it, handed me a life-threatening illness to make absolutely damned well sure I slowed down and stopped. Like that really worked... not.  I know my time is likely to be shorter than I'd have liked it to be, so I'm trying to get everything done at a 100 miles an hour, including this book. Typing it so fast I don't have time to worry about anything else. 

So far I've written about 102 and a half paperback pages, and that's about two-thirds of the way through. Some of it will. of course, need to be rewritten, and humour has to be shoved in all over the place too. 

Tomorrow I'm off for a publishing meeting, all very exciting, so tonight my printer has to work to print everything I've so far done. I've also got to scribble out my book objectives, an action plan, a sketch of a marketing plan, and a list of questions to write. I've also promised Francesca we'll sit down and watch some telly, and WM has just phoned too, he's promised to bring us in a takeaway tonight. 

Lovely jubbly, I'd better push on. 

PS. In the book I may decide to include some useful contacts and website addresses. Which ones would you recommend? Please let me know. Thank you. 

Francesca, Adam and I with a random lady in the background. 

Adventures with breast cancer: A Scary Day

Adventures with breast cancer: A Scary Day: Today is so scary, I've been in a state about it now for nearly a week. They decided against doing a bone scan to see what these two les...

A Scary Day

Today is so scary, I've been in a state about it now for nearly a week. They decided against doing a bone scan to see what these two lesions on my spine are, and instead they are giving me a Pet Scan, not to see if I've swallowed any dogs or cats, but to find out absolutely definitely if the cancer has spread there or anywhere else. They don't give Pet Scans to everyone, they are really expensive, so they reserve them for those of us who have a real risk of cancer spreading out of control. It's very clever, the scan picks up sugars in the body, and where there is cancer, sugars behave differently. With a bone or a body scan, any cancer has to be half a centimetre to be seen; Pet Scans detect cancer at cell level. 

In some ways, it's a very odd, but strangely exciting place to be. Next Friday, I'll get the results, and whatever they are will life-changing. The good news will be that there is no cancer whatsoever, which will mean that for the first time in nearly a year I can relax and know that all these really gruelling months of treatment will have been worth every moment, and I'll be able to start to put it all behind me and live a long and deliriously happy life. The bad news will be that the cancer is incurable, which will mean that cancer treatment will be an ongoing part of my life forever, and that that I will probably die much sooner than most people. It's like standing on top of a mountain, and waiting to see which way I get pushed, and the whole decision is completely out of my hands. 

That's not the scary part of today. The scary part of today is that, in just over an hour, I have to face my needle fear all over again, but plus plus plus. I am the most needle-phobic patient ever, and if you're new to this blog, there is a previous post you can read where I explained all about my riduculously embarrassing stupid phobia: 

,http://yvonnenewbold.blogspot.co.uk/2012/08/my-needle-phobic-past.html  

They can't use my portacath because the stuff they need to inject is sticky, and would stick to the plastic tube leading into me rather than making it all the way into my veins. They can't even use my arms, because the armpit surgery I've had on both sides means that there may be scar tissue which might prevent the stuff circulating properly. Oh no, my worst fear of all, they are going to   inject into veins in my feet. I've seen some poor people in the chemo room have this done, and it's always scared the living daylights out of me. I've been bursting into tears all over the place all week about this, and lying awake at night frightened witless. I've tried to get it into perspective and not be such a pathetic wimp over the whole thing, but I have failed dismally. 

I'll get there at 9.30am, they will do the needle sticking into me part, and no doubt this will go on forever because they can never find a decent vein until they've poked and stabbed a squillion times. Then I have to lie completely still for an hour to let the stuff circulate and bind with all the sugars in my body, then the scan itself will take up to 90 minutes. So I'll have to lie still and not move a muscle for nearly three hours. Me? Are they serious? If the needle doesn't kill me I might die of boredom. Oh, and I'm not allowed to eat until afterwards - which should be something to take my mind off it and look forward to a yummy lunch, but right now I'm not convinced I'll even live that long. 

I wanted to write about all sorts of things, but time is short and I really have to go. If I get a chance later, and I actually do survive this ordeal and I'm still alive, I'll try and write some more, probably about happy things like birthday parties and stage plays, and maybe even a bit about the language people use to describe having cancer. Wish me luck! 

Coke Floats and the Marsden March

Have I now got incurable cancer or haven't I? Well the jury is still out, the MRI scan was inconclusive, and I'm waiting for a call from the hospital to hear whether or not I now need a bone scan to get a clearer idea of what on earth is going on. What we do now know is that it's not just one little lesion on my spine, it's now two, so we'll just have to wait and see. Luckily, there is so much else going on at the moment that this whole thing is way down low on the "things we have to think about" list. 

"Coke Floats and Chemo" is well into rehearsal and I'm having a great time with it. It's the stage play of this blog, and it's only 5 weeks til we perform it at the Brighton Fringe. I'm playing myself, and the cast also includes WM, my lovely daughter and Anita,  my friend who took the photos for the Cancer Photo Shoot blog post of several months ago. Sheree Vickers who runs our theatre group, Savvy, is the brains behind the whole venture,  and it's her energy and vision that's making it happen. It's very hard to try and condense the whole of the last year into a 50 minute play, but somehow it's working out well. It's hopefully uplifting and funny rather than sad and depressing, and the real star of the show is a puppet that Sheree has commissioned, which is the spitting image of me. We had it at home for a week because my daughter is one of the puppet masters, and it is so lifelike that we had great fun freaking everyone out with it. Basically I share my role with the puppet, and "Mini-Yvonne" can get away with doing a lot of naughty things I'd love to do but never could. It's also a back-up - because if, on the day, I'm not well enough to go on stage, Mini-Yvonne will just have to carry the whole show. She's far more talented and considerably funnier than I am, so maybe that wouldn't be a bad idea. Later today, I'm helping put together part of the backdrop for the play. Sheree has had a  "paperwork mountain" built to mirror my own one, and our job today is to stick lots of bits of paper onto it to make it look more realistic. Sheree knows me very well, and has baked dozens of cakes to lure us over to help!

Here are a couple of photos of Mini-Yvonne - one relaxing in Alice's house with a glass of wine, and the other, looking rather fetching and sexy in some swimwear. Notice the selection of wigs, and what you can't see is that she even has removable boobs, just like my own little falsie! .

We are doing two performances at the Brighton Fringe on Saturday, 18th May, and here's the link:

http://boxoffice.brightonfringe.org/event.aspx?evId=4459#

Basically, working on this is a lot more fun than worrying about whether I've developed incurable cancer or not. Obviously, this whole new health thing is there, constantly at the back of my mind, and I have done a fair bit of thinking about it. It's a bit of a luxury being able to think about it while it's still a hypothetical issue. I don't know exactly how I'll feel or react if it does turn out to be sad and difficult news, but I do know that this shadow of cancer that's been hovering over me for nearly a year has already taken up more than enough precious time, strength, energy and resources. I really hope that any more bad news won't launch me into some deep dark miserable depression. Life is just too valuable to waste on being down in the dumps about things that we can't change, particularly if that life is unlikely to be as long as I'd always hoped and expected it to be. It's far more important to spend time with the people I really appreciate, family and friends, laughing a lot over a glass or two of vino. 

One thing that has become crystal clear to me is that I'm sick and tired of waking up each morning carrying the guilt of all the mounting admin tasks that need doing. Somehow, I really want to make a superhuman effort to clear it completely. It's the additional mindless crossing the i's and dotting the t's that comes with having disabled children.  Each of the children has a multi-disciplinary team of professionals supporting them, and in our modern-day tick-box culture, each of these professionals generate a mountain of documents and forms that need filling out. Last week I collected all the paperwork together and spent a whole day going through it, and made a list of the tasks that need doing. Of the 106 tasks on the list, I've managed to knock off 43 in less than a week. Unfortunately, another 8 things have been sent in the last few days so the original list has grown, but I'm down to about 71 things to do, I think. It still feels like a mountain to climb, but it's a lot more doable than over a hundred.

If they are ever going to find a cure for cancer for me and millions of others, they need money to do the research. A few weeks ago, Claire and Dave, a lovely young couple who have really supported my son Toby and myself over the past year, did something quite incredible. They signed up for the Marsden March, which is a fourteen mile sponsored walk from one end of London to the other, starting at the Royal Marsden in Fulham, and ending at the Royal Marsden in Sutton, where I'm having my cancer treatment.  The Royal Marsden is a specialist cancer hospital, working very closely with the Institute for Cancer Research, also based on their Sutton site. The work they do pushes boundaries not just for their own patients, but for everyone with cancer all over the world.  

What made Claire and Dave's gesture all the more amazing is that they took Toby with them, and pushed him in his wheelchair the entire way. The weather was foul, it poured with torrential rain all day along the whole route. Toby really didn't understand  any of it, which must have made it much harder for Claire and Dave, who were reassuring him and keeping him happy the whole way. They got up really early, parked the car at the hospital in Sutton, then got on a coach to Fulham. Toby was very excited for this bit. He loves coaches, but he must have thought it was a bit odd that there was no castle or seaside when he got to the other end. Instead, they walked all the way back to Dave's car in the pouring rain, so he must have wondered what on earth was going on. He has very little speech or understanding, but he did have Claire and Dave's kindness and love all the way.  We were there at the finishing line, when the three of them, along with  5,000 other soaked-to-the-skin fellow marchers, arrived safely. Claire and Dave helped Toby out of his wheelchair for the last few yards, and supported him as his walked towards us. It was one of the most emotional moments I've had this year when I saw him cross that line.

Here are the three of them, finally under cover, a few moments after they completed the walk. Already they have raised well over £700 for cancer research, but if you would like to support them too their JustGiving website link is http://www.justgiving.com/Claire-Devine1.  There's a lovely photo on it of them taking Toby ice-skating just before Christmas too. 

I'd better go and get ready to give Sheree a hand with her paperwork mountain. It's going to be a lot more fun than doing my own. I'll try not to leave it so long between blog posts next time. 

If you’d like to buy a copy of Yvonne Newbold's book,  “The Special Parent’s Handbook”,  here’s the link to the Amazon Page:

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