Coke Floats & Chemo: Life as it happens

Coke Floats & Chemo: Life as it happens: Health scare Did you know I've got a new health scare that might or might not be another spread of cancer? It's made me very poorl...

Life as it happens

Health scare

Did you know I've got a new health scare that might or might not be another spread of cancer? It's made me very poorly on and off for the past couple of months or so, and then it all got very serious and became infected. I'm now waiting for biopsies, operations and a proper diagnosis of what's going on. I think I should have had a letter weeks ago, but I just haven't had a minute to chase it up. When you have stage 4 cancer, although it's nice to have things to take your mind of things, I've had so many other things to worry about lately that the whole cancer thing really has had to go to the back of the queue. Tomorrow, I promise I'll make that phone call and see whether or not I've been forgotten. 

Please don't ask in too much detail what it's all about. I try to be open and honest, but this is just too embarrassing to talk about and expect you to keep a straight face. It's bowel related. Ha ha ha not. It was hard enough having dozens of doctors taking it in turns to peer intently at my boobies in the last few weeks of having two of them. Now they want to peer at my bum. Dignity and decorum go out the window completely with cancer, and I don't think you ever get used to it or comfortable with sharing the best-hidden parts of your body with total strangers, no matter how well qualified those total strangers are. The idea of talking about it outside of a doctor's room fills me with cringing dread, so I need to quickly find a way to say something without telling anything, and for someone as naturally open as I am, that's the very hard bit. 

Beyond my control

Never mind, there's so much else going on that there's plenty of other things we can talk about. I'm on the brink of exhaustion all the time and stressed up to the earlobes and not very well, but when life happens you have to be there, take it on the chin, deal with it and cope whether you want to or not. Sometimes I look at the way things are in my life and it's hardly any wonder that cancer might be winning. A little bit more control over my own life would be very nice sometimes, to be able to choose what I do and when, make my own priorities every day, and actually be allowed to see them through to fruition. Instead, I'm fire-fighting, responding to crises, and mainly sorting out the mess other people have imposed on my life. It gets wearing, it's very frustrating, and it's something that's really hard to accept, even though I've been living a version of this life from the moment Toby was born all those years ago. When a child is as profoundly disabled as Toby is, you have to rely on other people. When those people don't always join up their dots, somebody has to, or Toby will pay the price. What mother would let that happen? It's a joyless, thankless task, and it means that parents in my situation come from a different starting point. Before we can start doing the things that we want to do, the things that make our souls sing, we're sorting things out, putting wrongs right, making things happen - but sometimes the sheer scale of keeping all those essential balls in the air just spills over into ridiculousness. 

Another move for Toby

Toby has to move care homes. Long story, and maybe when the time is right I'll do a longer post about it, but it's dominated virtually every waking hour since Christmas week.

Care-home hunting is like a full-time job for an entire office-block of people. I've read 70 CQC reports. I've spoken to 50 care home managers. I've visited 12 care homes. I've written a report for each of them for our Local Authority, as well as a more generalised report about the search itself in terms of expectations and success-critieria. I've had countless meetings with Toby's social worker and other members of her team. The emails I've written and the forms I've filled in would rival the word-count of War and Peace. 

I've taken Toby back to visit the best places we're seen. That was emotional. Suddenly this whole care home search became real - it stopped being a paper-exercise and became something much bigger. It's a huge responsibility. Toby cannot talk, he doesn't understand that his little world is about to be thrown into turmoil all over again and he will have to readjust to new people, new routines, a new environment and different ways of doing things. 

Luckily there was one place where he just looked so happy and relaxed. The staff responded to him with warmth and enthusiasm, and he soon had them playing games his way with him. While Malcolm and I chatted to the care home manager at the kitchen table, Toby took himself off and wandered around, until finally settling down on an armchair near some of the residents, perfectly content and relaxed. It's the closest I could get to involving him in the decision-making process, but it worked better than I could ever have expected. 

That's the place we want, the local authority have asked them to start their assessment on him, and the ball is finally beginning to roll. It's taken nearly 3 months to get here, and there are still a lot of things that can go pear-shaped between now and him moving in. They may not want him, although they dress it up in nicer words along the lines of "unable to meet his needs". This place has an upstairs bedroom, so he has to have an occupational and physiotherapy assessment to ensure the staircase is safe for his reduced mobility. 

Yesterday he hurt his foot badly and today he still can't walk, and I can see a shadow of impending doom looming unless he fully recovers by the staircase assessment day on Thursday. If he passes that test, there are still about another 100 things that could go wrong, and that's before we can even begin to think of the funding fight that has to be overcome before anything happens. I'm holding my breath and crossing my fingers. I just hope I don't have to add banging my head against a brick wall to that list before the next couple of weeks are over. 

Fire-fighting - literally! 

Then, three weeks ago, my father accidentally set fire to his house. That was a huge shock, but luckily, despite some minor health-related smoke-inhalation problems, Dad got out safe and well. He's living in our house - he and I haven't lived together for over 30 years. It's all a bit surreal, particularly when he tells me off for things like being on the phone for too long (Dad, you were allowed to do that when I was 14 and you were paying the phone bill, but I'm a grown-up now and this is my phone....!), but he makes the best cup of tea for miles, and we're all thoroughly enjoying having him around. 

Trouble overhead

On top of everything else, just to make life even more interestingly diverse, directly behind our house they are building a new development, which hasn't been much fun for the last couple of months. The noise is horrific and relentless, and so close to our house it we can feel every thud and clatter. Sometimes the house shakes, and sometimes it's so bad you can feel your own spine revererating. The builders working on the site don't seem that competent or cautious either. So far, due to their negligent drilling through things they shouldn't be touching, we've lost electricity for whole days at a time, we've lost our internet connection and our land-line telephone for nearly a week, and they also cut through the cable that brings TV into our house. Oh, and the gas leak too - a whole sleepless night of the gas board noisily digging up the road while they had to fix the damage the builders had done before anything really serious happened. 

Now, the construction company wants to erect a crane which will loom over us for the best part of the next three years, swinging freely over our house and garden. So more meetings, emails, phone calls, emotion, discussion, rallying of the troops among the neighbours ..... and we still aren't any further forward. It looks like it will happen, we'll have to sign an agreement and get a few paltry pennies a month for our co-operation, but with it will come a whole new raft of worry as to whether they have secured every load properly or will something heavy fall and flatten our houses. 

A & E family day out

Yesterday both Toby and Malcolm ended up in A & E. Toby with this mystery foot injury - his third similar injury since he's lived away from home. Malcolm is very poorly indeed, I've watched him get steadily more and more unwell over several days and yesterday I took one look at him and I just knew this was serious. They managed to bring down his raging temperature, they gave him i/v antibiotics and a litre of saline through a drip, and now he's back home but still really unwell. While I've been writing this, I've had to go over and see Toby too - he's started being sick. Is it related to the foot injury in some way? How much pain is he in and can pain alone cause vomiting? Too many questions to try and second guess. I'm going over again in a couple of hours to decide if he needs to go back to hospital tonight or if it can wait til the GPs surgery is open in the morning. 

Let's blame mum

It was Toby's second trip to A & E in 5 days. The one on Monday caused no end of stress. No one at his current care home can change his gastrostomy feeding tube, so I always do it. No big deal - I've done every change since he was a baby - I could do it in my sleep and standing on my head, so I thought nothing when they asked me to put a new tube in on Saturday.  However, by Monday, some sort of miscommunication whispering campaign seems to have got going, and specialist nurses and our GP were demanding that the care home staff took Toby straight to hospital to ensure there was no internal damage, and that I'd changed it properly. Hello? Why? What? 

Suddenly I was plunged into the middle of a nightmare where it seemed that none of the professionals involved with his care trusted me to change his tube. Phrases like "compromising his safety" started being bandied about, and next I was being interrogated over the phone by someone demanding to know what training I'd had and how I could prove it. These things are serious - I know from bitter past experience that before you know where you are a parent is up in front of some local authority kangaroo court on a trumped-up safeguarding charge. By the time it gets that far, all the professionals will have closed ranks, and the finger is firmly stuck in the "pointing at mum" position, which means that nobody else can possibly be implicated in anything whatsoever. 

So everything had to stop for the best part of three days while I tried to unravel the chain of events that had escalated such a minor detail into some sort of life-threatening emergency with me somehow portrayed as the vilified perpetrator. To be perfectly honest, fuming, incandescent with rage and livid doesn't come close to the fury I was feeling, yet in these situations fury gets you nowhere. Instead, you have to swallow the anger, present as Mrs Nice and Utterly Reasonable, and use every last vestige of tact, diplomacy and social skills that you can cobble together as quickly as you can. Yes it took three days of phone-calls, emails and research to get back to square one, which was that Toby's tube was fitted perfectly correctly, he had never been put in any danger whatsoever, and that I am perfectly competent, capable and responsible to change each and every tube that ever needs changing again. What a total waste of time. 

However, this week I did hear of another looming safeguarding meeting, this one about Toby's second unexplained foot injury incurred at his current care home. Another half day stolen away, more reports to read, things to get my head around, mustering my wits about me so that I can ensure that when the music stops the fingers aren't all pointing at me. They can't be, I wasn't there, but sometimes people will say whatever they have to say to shift blame and wriggle out of responsibility. 

My workshops launching

What I'm really trying to do is to find time to write my next book and launch my new series of Workshops, but it seems like the world and his family want to conspire to stop me ever getting on and earning an honest crust. That's the fun, exciting stuff, the stuff that makes my soul sing, gets me excited and fills me with energy. I'm sure it's what's keeping me alive, whereas everything else just drains me of energy. 

If I could just win a little bit of time back so I could focus and really get this off the ground, I'm sure everything else would fall into place. Instead, I'm walking through treacle sorting out other people's messes. Of course, when they are Toby related, I wouldn't trust anyone else to sort them out, so I have no choice, but that doesn't mean it's any less frustrating. I've got over a hundred lovely people who are waiting for replies to emails, tweets, messages and texts, but there aren't enough hours in the day. As it is I'm lucky to snatch more than 6 hours sleep most nights, and trying to work in a full house of lovely chatty people all day long isn't easy either. 

The Workshops? Oh I'm so glad you asked! I don't know how long I have left on this planet, and I want to spend as much time as I possibly can in helping to improve our Public Sector Services be more responsive and appropriate to the families who most need their help. I've designed a series of workshops for parents of disabled children. If we can make families stronger and more resilient, they will be better able to assert themselves with the teams of education, health and social care professionals who work with their children. 

I'm now working on a parallel series of workshops for the professionals. When you have a child like Toby, it can all get very "them and us". That leads to mistrust, miscommunication, and poorer outcomes for everyone - stress for the adults, poorer decisions for the children. 

We're moving into an era of less public sector spending, so we have to do it differently if we are going to support the families most in need. I see a future where kindness, partnership working and simplicity dominate how things are done rather than wasted resources being squandered on policies, procedures and processes, with families back in the centre of things instead of endless committee meetings and tick boxes. These simple changes cost nothing, in fact they save money, but the difference they could make is priceless. 

The nice bits

There have been other fab things going on - here's a whistle-stop round-up. 

A wonderful Saturday lunch with my breast cancer twitter-sisters! They've kept me going through thick and thin for nearly 3 years now, tweeting support, encouragement and love in 140 character bursts. Well it was a highlight of this decade to actually sit down together for a whole afternoon and natter, chatter, laugh and hug the hours away. 

I also met a very special lady while she was on a rare day-trip to London. Marie Ennis-O'Connor has been there for me every step of the way since I was first diagnosed with breast cancer, through to starting to write this blog, and she has been holding my hand and cheering me on all the way through The Special Parent's Handbook Adventures. Marie was everything and more that I thought she'd be, and we hugged so hard to make up for the three years we'd waited to say a proper hello

Earlier this week, I was invited to a really inspiring evening out, and Malcolm and Francesca came along as my guests. It was the Sutton Community Awards, where local people are the stars of the evening. I was both honoured and humbled to be nominated for The Outstanding Achievement Award 2014, there I am in the front row proudly holding my runner's up framed certificate. 

There was a very special bonus during the evening. A very long time ago, when Toby was tiny and fighting for his life on a daily basis, we were featured fairly regularly in the national press, and we appeared in charity brochures. One morning, a really lovely photographer patiently waited while I tried to ensure Toby was breathing sufficiently well enough to come off his oxygen for just long enough to take some good photos. Last year I found my copy of the photo that very kind photographer had taken that morning and I just knew - it had to be the iconic photo on the cover of The Special Parent's Handbook. The photographer's name was printed on the back of the photo, so I googled him and rang to ask his permission to use the shot. We ended up talking for ages, his warmth and enthusiasm completely undinted by the passing of what was nearly 20 years. If you read the book, please look out for his name, Richard Bloomfield, in the acknowledgements. Guess who was the official photographer on Tuesday at these awards? None other than the lovely Richard! Seeing him again and catching up was like the jewel in the crown of an already very special evening. In case you haven't seen it, here's Richard's original photograph taken that morning of Toby and me. 

It was the week of Awards for the Newbold family. On Thursday I was the proudest mummy when Adam won a Jack Petchey Award for his support work in rehearsals and on stage with Action Replay, the adult learning disability drama group under the Savvy Theatre Company umbrella. Adam was one of King Arthur's knights, and make sure that all the other knights were always on stage with him, in the right places and saying and doing the right things. 

Here's Adam collecting his Jack Petchey Award

And here is is again, as a Camelot Knight in a Princess Hat. 

Sadly, I was too ill to actually be there - I had the tail end of whatever bug has laid Malcolm down so low, and I would have embarrassed him like crazy by coughing all the way through the ceremony. 

Feeling rubbish

Lately, I've been ill too much. Not only is this extra unmentionable health problem bringing me down lower than I like, but I'm catching every bug that's going and not shifting them as quickly as I should be either. Some days I wonder if this is the beginning of the end, other days I think I'm just on overload and it's nothing whatsoever to do with cancer, more to do with curved balls coming faster than I can catch them all. Whatever, today is March, Spring is on its way, and I'm determined to plan exciting times ahead for as long as I possibly can. This month alone, I'm speaking at 3 conference, and bookings are already coming in thick and fast for the Workshops. Later this month I'm off to North Wales, and I'm getting enquiries from all ends of the country and even Dublin. 

Letting everybody down

Meanwhile there are so many emails, tweets, messages, facebook comments and phone calls that I'm not getting time to reply to - every day the list mounts up and up and there are over a hundred lovely people I go to bed every night feeling guilty about because I haven't got back to them yet. Huge sorry if you're one of them. You've probably gathered that some days I'm barely keeping it all together. Eating and sleeping fall off the radar too several times a week which isn't very clever, but there just aren't enough hours in the day at the moment to fit it all in. Can't wait til things ease up, and I hope I don't lose too many friends in the meantime if they think I'm ignoring them. 

And next....

Tomorrow, I'm organising business cards and banner stands, and I'm struggling over how to word them to represent what I do without blowing my own trumpet in a terribly unBritish fashion. Earlier I asked Francesca for some iconic words that describe me. "Annoying", "Short" and "Crazy" was how she thinks I should describe myself. Oh, and "insufferable". So if you know anyone looking for a conference speaker who is insufferably annoying, short and crazy, I'm your man! 

It would be great if you'd like to keep in touch through my FB pages 

Coke .Floats & Chemo Page  for cancer information and support

Special Parent's Handbook Page supporting special needs parents 

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:

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