Friday, 27 December 2013

Coke Floats & Chemo: Bittersweet Christmas

Coke Floats & Chemo: Bittersweet Christmas: Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on...

Bittersweet Christmas

Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on the table. That wretched dinner! More about that one later. 

Years ago, when my kids were tiny, and Toby was oh so ill and fragile, going out was nigh on impossible, so instead I promised myself that what my kids lacked in terms of days out I would make up for with fabulously fun and over-the-top birthdays and Christmases. However, I never bargained on getting cancer. 

This Christmas has really given that old cancer of mine a chance to showcase its talents which are total and utter exhaustion, zilch energy, distracted concentration levels, crippling joint pain and a fairly generous helping of depressive lowness too. Absolutely everything took longer, didn't go quite to plan or even deteriorated into total disaster, or so it seemed. I just seemed to spend the previous three weeks working harder for longer hours than I've ever had to before, and just not achieving anything at all worth noticing. The house was a tip, and the harder I tidied the more tippish it seemed. The more planning I did the more catastrophically pear-shaped things went. Quite frankly, I've always been like Mrs Christmas, loving every minute of pulling everything out of the bag and making it all happen, but this year I was Mrs Christmas Misery personified. 

Christmas dinner was a nightmare. I could not get my head around timings or cooking methods or gravy, bread sauce and sprouts whatsoever. How have I got everything in the oven and out simultaneously and on time in previous years? I haven't got a clue. All I know is that all I wanted to do by ten o'clock on Christmas morning was to sit on the floor, burst into tears, throw the sodding lot in the bin and get someone else to produce cheese on toast for all and sundry instead. 

Somehow it all worked, but I've learned some valuable lessons in the process. At 2.30pm baked salmon fillet with a herb and lemon sauce on brown bread and butter was served, and swiftly followed by Turkey, Ham, Stuffing, Pigs in Blankets, Roast Potatoes, Bread Sauce, Sprouts, Parsnip, Broccoli, Peas and Gravy at 3 O'clock on the dot. All by myself, and the clearing up too. 

So what were those lessons? Quite simply, never again. I've had to face up to the fact that I'm just not well enough anymore. The stress and the panic and the worry and the going to bed at 3am for a week or so beforehand just to try and get everything done is crazy. If I'm lucky enough to still be alive next Christmas and I do this all over again, then I would really be pushing my luck for the Christmas after that. 

However, next Christmas will not be the same, nor any Christmas beyond that one ever again, and not because of my cancer, though goodness knows that may impact on future Christmases a fair bit too. 

The main thing I've had to cope with is the sadness that this year was an end-of-an-era Christmas, with all sorts of things beyond my control about to change for our family. 

The first change is heartbreakingly difficult to even write about, and it has taken months of very difficult emotions to cope with to accept this change as an inevitability.  Toby is leaving home. I know that this is age-appropriate, and at 19, a vast swathe of his age-group are away at uni or off doing their own thing, but with Toby it is so different. He still has the mental age of a 2 year old, and the mindset of a toddler. He is very Mummy-clingy, and has no clue of what we are planning for him and why. 

The very sad reality is that I am no longer well enough or strong enough to care for him 24/7. I tuned that one out and lived in denial very successfully for a very long time, but then a tragic event brought it to a head. I know of another breast cancer patient whose disease was following a near identical pattern to mine. She, too, was doing comparatively well until her disease started progressing very suddenly, and in the space of 6 weeks she had died. It was a huge shock to her family, and has given me a bit of a wake-up call to ensure Toby is properly cared for if the same thing were to happen to me. 

If I was to deteriorate suddenly, what would happen to him? Social Services would have to act very quickly, and may have no choice but to shoehorn him into a situation which may not be suitable or where he may not be happy, and he wouldn't have me fit and well enough to be banging or doors if things are going pear-shaped, or to visit him several times a week to help him settle in. 

One day, I will die, hopefully not for a very long time yet, but when that day comes, I want it to be a sadness for Toby, rather than a tragedy. The idea of him losing his mummy and his home in one fell swoop is just too much for me to comprehend. I owe it to him to ensure he is happy and settled elsewhere before I toddle off the edge of this planet. 

Making such a major decision has been probably the hardest thing I have ever had to do, The idea of Toby, as vulnerable and dependent on others as he is, being cared for in some sort of residential setting is just the stuff of my nightmares, and has been for several years. When he was very little, he was not expected to survive, which was incredibly hard to accept and live with on a daily basis. At the time, I thought that was the worst thing that could possibly happen to a mother, knowing with virtual certainty that her offspring will die in childhood. 

Now I wonder if that really is the saddest possible outcome. At least he would only have known the type of love that a warm, close-knit family can offer. For years I have woken in the night tortured by the image of a Toby in his fifties, living somewhere else, unhappy, unloved and unable to make his needs and wants understood clearly. All learning disabled adults are vulnerable to abuse of all kinds, but when they are also largely non-verbal, these fears for your child's future are magnified beyond all proportion. 

My job is to make sure that we springboard him into his new setting as positively as possible, and that I am still well enough to advocate for him for long enough until Francesca and Adam are sufficiently confident to take over. He will always be a huge part of this family wherever he is living, and I am trying to console myself with the fact that, if this goes well, our relationship could develop so that I am "just his mummy" for the first time in our lives. Of course he will still come home often, and we will visit him frequently too. Yet other people will be there to do his physical care and cajoling and giving him his medicines; all that stuff will be out of the way so that he and I can just have fun in the very silly ways we both enjoy together. 

In the next few days, I'm hoping to write another post about the whole topic of care, and the decisions I have had to make and why, but right now there's another change to tell you about too.

I'm going to be a grandmother to a little baby boy in April, courtesy of my youngest son, Adam and his lovely girlfriend, Alex. They told both Grandmothers-to-be together in the same week their GCSE results came out, so they are far too young in most people's eyes. It's not easy to become a parent when you haven't even finished your own childhood yet, but I am so proud of both of them in the way they have taken it on board. They are acting responsibly, saving for the baby, working hard and pulling together - they may be young but they are growing up incredibly fast and showing a level of maturity that I've seen lacking in new parents double their age. 

There are huge social stigmas attached to teenage pregnancy, and I've done more reading up on the subject than I ever thought possible. Yet how can the birth of a brand new baby ever be anything other than joyful? In many ways this little boy is already blessed. He is being born into two incredibly strong, resilient and loving families who are both pulling together already to support this new little family unit in every way we know how to. 

If you have been reading this blog for a few months you may remember that the one thing I was very sad about when I was diagnosed with Stage iv cancer was that I was unlikely to meet my grandchildren. If Adam and Alex had waited a more conventional extra 10 years before starting a family, that may well have been the case, but now I can look forward to being a fully-fledged Grandma with babysitting duties and everything else Grandmas are good at doing. 

In our situation, though, I feel very strongly that my role is to support them all through thick and thin, come what may. When they leave the house with the baby they are going to have to learn how to grow a thicker skin to deal with hostile stares, remarks, judgements and ignorant assumptions from strangers who won't understand that young parents need more support, not less. 

Teenage parenthood does not have to be a disaster, in fact, I'm hopeful that this baby could actually be the making of both of them. As long as we all support them so they can finish their education so that they have a reasonable earning capacity, they don't have to be a poverty breadline statistic either. If I'm still around I will be highly amused at watching Adam deal with parenting a teenager when he is still in his twenties, but having seen both of them becoming focussed and forward-thinking by the day, I'm sure they'll both deal with whatever challenges parenthood brings them admirably. 

Even Francesca is off, out and about, doing her own thing. She has made me brim with pride and quake with fear in equal measures this year, as she has discovered a travel bug and fallen in love with Italy. She spent several weeks in the summer as an Au Pair on a Sicilian beach for an extended Milanese family supervising 5 small children. Then she enrolled on an intensive language course in Rome, absolutely falling for the place. This weekend she did both Rome and Bologna, managing to make it home in time for Christmas but arriving at Heathrow in the height of the worst storm we've had for years. I have a feeling she'll be spending a lot of 2014 in pastures new, and I'm thrilled to see her making the most of her youth. 

It was only May 2012 that I was diagnosed with cancer, and my biggest fear then was leaving the three children motherless, well before they are ready. They are still nowhere near ready for me to pop my clogs, but just look at how far all three have come in the space of less than 2 years. 

Back to Christmas. Dinner was on the table but it took me an hour or so to get my own Christmas spirit flowing nicely again, possibly helped in the end by a couple of glasses of good red wine. By the evening, things were great, the kids were happy, the whole family was there and we laughed like drains til the small hours of the morning. In the end, it was probably one of the nicest and happiest Christmases ever. 

Who knows what next Christmas will look like. The dynamic will definitely have changed, but Toby, our very own family Christmas King, will definitely be at home for the whole of Christmas. Who knows about the others? Francesca, Adam, Alex and Baby will know how welcome they will be, as will everyone else in our extended family, but it's now up to my kids to decide for themselves to do what feels right for them at Christmas. One small change I may make though, next year it could well be cheese on toast for Christmas Dinner. 

Wednesday, 4 December 2013

Coke Floats & Chemo: A long way from perfect

Coke Floats & Chemo: 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 ...

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. 

Friday, 29 November 2013

Coke Floats & Chemo: The Special Parent's Handbook

Coke Floats & Chemo: The Special Parent's Handbook: Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my fi...

The Special Parent's Handbook

Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my first book, because I really hope there's going to be time to write a load of them. Already I've pencilled together the bones of 12 different book titles, but then if no one likes my first one, who knows whether I'll be brave enough to impose the others onto an unsuspecting world. 

There are so many things I could write about, but the first one is going to be a little bit special for me, something I promised myself I'd write a very long time ago, when my son, Toby, was first born. I'm writing that book that I wish had already been written so that someone could have given it to me in those scary, lonely, bleak days when he was only ever one last breath away from being taken from us. 

Of course, in those early days, I had no idea that both Francesca and Adam would also be diagnosed with a whole host of disabilities, and how different our family life would inevitably become as a result of all three of them being not quite mainstream. 

Toby is so profoundly disabled that he is in a different league to my other two, and in a lot of ways I think that has done them some favours. If either of them had been helicoptered into another family where they were the only special need's child, I don't think they would have developed the resilience and resources that they have; Toby gave our whole family a very different perspective on degrees of disability. 

So far, I have three firm buyers for the book, but hopefully there may be a few more once it's finished. What I'd really like is that there may be some tips, tricks or strategies that I can pass on to parents still struggling at the early stages of realisation that all may not be quite right with their child. If even one family can learn from some of my mistakes, and find a way to short cut some of the wrong paths we took as a family, then I will be really happy. I think I somehow got quite a bit of it right along the way, too, though. 

Francesca and I had a bit of a laugh this evening, reminiscing over silly things that happened before she was old enough to go to school that are going into the book, but going over some of the memories has been quite difficult and has stirred up some of the long-buried sadnesses and ancient hurt, so it hasn't been a totally easy ride so far. 

Bringing up three disabled children is a bit unusual, and it's given me insight into a lot of things I never would otherwise have known. Once upon a time, in those innocent days when disability was something that only ever happened to other people's families, I didn't know a single person who had a disabled child. Now I hardly know anyone who doesn't. My "disabled mummies" are hilarious, we share a gallows humour that can make you laugh til your sides are hurting far too much. I couldn't get through without them. They also are always there, and understand in a way that others can struggle with, when things go horribly wrong. Sometimes things don't even go that horribly wrong, but you reach a new moment of a brick wall, and can't stop feeling low for days on end, and they're there with the Kleenex and cuppa just when you need it the most. 

Three of these lovely ladies are my "sounding board". As I write each chapter it gets emailed to Sian, Linda and Benedicte, who all look at it and tell me what should stay in, what should come out, what else needs to be said and how to make it better. One of the tips I've so far had back is "For goodness sake let them know that just because they have a disabled child they aren't ever going to be immune to other shit happening". 

Good point, it really does often seem that the bad-luck goblins are queuing around the block, laughing their heads off as they wait in turn to each lay a little bit more trouble at the door.  We might not be immune to trouble, but we do get fairly used to it and even calamities to happen. Having the kids I have has certainly been good training for dealing with breast cancer; I think I've somehow had to learn to deal with the unexpected, and take life as it comes.  

My secret hope is that the books lead to being asked to do more public speaking, in front of audiences where my experiences might actually help to change things for the better for parents like us. It would also be nice to do well enough to pass on a little bit of a nest egg to each of the children; heaven only knows they will have far more to deal with because of their disabilities, and there's a very good chance that I might not be around to help steer them way into adulthood either because this wretched breast cancer has decided to lay down roots in my spine.  A little bit of financial security would be lovely, and that's what's really keeping me going. 

I've just finished Chapter 7, with another 5 to go. Then there will be an introduction, a conclusion, and a huge rewriting of sections of the book before I publish. Something really annoying keeps happening. As soon as I've pressed "send" on the email to my three ladies, my head gets stuffed full of what I've left out and better ways to say what I've said already, and I convince myself that my efforts so far are rubbish. Even when they tell me they're not, I just think they're probably being nice. Last night I got two words back from one of them about Chapter 6, she simply wrote "It's lovely". That sent me to bed with a nice warm feeling, but I woke up again this morning with every insecurity that goes with this whole writing malarkey. All I can do is my best, which isn't always easy in my household. I went on a bit of a paddy this afternoon and told anyone who'd listen that they had to shut up and leave me alone..... some days I'm lucky if I get two and a half words written before the next interruption. 

Toby's in respite for a couple of days so I should be able to get my head down and concentrate, and they have promised to cook their own meals and do their own washing for the next 36 hours while I steam ahead. I'd like to get as far as Chapter 10 by Saturday morning, but I then have to squeeze in cancer treatment before collecting Toby at 2pm. The chemo room opens on Saturdays around Christmas time and they reschedule everything so no one has to go too long between treatments due to the Christmas and New Year bank holidays. 

Hey, did I really just type those two scary words, "Christmas Time"? When am I going to get time to squeeze in Christmas too?! My to-list, not even counting the book, is horribly long and scary too, so I need about 20 extra days added to every week at the moment. Crazy. Does any of it matter? Unfortunately yes. Better go and get some shuteye or the Chapter 8 tomorrow morning will be nonsense and I'll sound as drunk as a skunk on the four phonecalls I have to make from the list. It's nearly 3am already, and come what may, I have to be up at 7.30am.  Night night. 

Monday, 11 November 2013

Coke Floats & Chemo: She's that lady with cancer, you know

Coke Floats & Chemo: She's that lady with cancer, you know: Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my ...

She's that lady with cancer, you know

Cancer, disabled children and writing a book have totally dominated my week, with a fair amount of very kind and positive comments about my analysis of some of the problems facing our NHS too. It's been a good week, if a little bit too full-on to catch my breath very often. 

Friday was Cancer Day. Not only was it my 3 weekly visit to the chemo-room for another dose of Herceptin and Zometa, the two drugs that are hopefully holding my cancer at bay, it was also my 3 monthly appointment with the Consultant Oncologist. 

He is a lovely man, everything looks very encouraging, and there wasn't any bad news, indeed, there was actually some good news, so it was a bit of a surprise that it left me feeling low and sad all over the weekend. 

The good news is that they have taken the decision that I'm going to stay on Herceptin indefinitely. The usual time is one year, which is roughly how long I've already been taking it. However, in women like me whose cancer has already spread, sometimes it is being taken for several years. The drug itself has only been around for 10 years, and there are pockets of women around the globe who have now been on it for 6 or 7 years or even longer, and many seem to be doing incredibly well on it, and it seems to be holding the cancer back very successfully. It they are also taking Tamoxofen or Letrozole to block their oestrogen levels too, then the odds of it working well are further increased. I come into that category since I also take Letrozole, and although there are no guarantees that it will work in every case, and there are also cases where it can suddenly seem to stop working, it is really good news. 

Breakthroughs are being made in cancer treatments all the time, so the longer I keep going, perhaps there will be other new options I may be offered further down the line. So I should be dancing around the kitchen thrilled to bits, but I'm not. At first I felt flat, then very low indeed, and I'm really not sure why at all. It's probably another layer of acceptance that, whether I like it or not, cancer is lurking and will always be lurking deep inside my spine, watching and waiting until it can pounce and spread and kill me. My job, and the job of the medicines I'm on, is to do everything we can to outsmart it and keep it on the back-foot, and I suppose this weekend it just hit me all over again that that's not really the way I want to live my life, with this huge scary shadow looming over me and trying to kill me. I try to tune it out most of the time and just get on with living, but I suppose hospital appointments are always going to bring it out into the open and back into the room to bite me on the bum all over again. 

I'm feeling better about it all today though, and getting the whole thing back into a more manageable perspective. Part of it is about realising that I can never turn the clock back and be exactly who I was the day before diagnosis, too much has changed. I will never feel completely well again for starters, the doctor on Friday said that this breathlessness and chest pains is probably more to do with the mastectomy scar tissue and will be with me life-long. Unless, and this one will really make a load of you who know me, or have read my previous post My Needle-Phobic Past, laugh long and loud..... unless I am prepared to try Acupuncture. We actually have a lovely, highly-skilled and very patient acupuncturist in the family, WM's sister, but it still scares the living daylights out of me. 

I know that I'll never be able to walk far without becoming breathless, I know that the agonising joint pains from the side-effects of Letrozole will continue to make me feel like a crippled and weak 103 year old, and I know that the numbness in my fingers and toes won't ever subside, and that the resulting clumsiness will continue to cost me a small fortune in broken crockery. I know that my stamina will never be once what it was, nor my concentration, and I also know that forever more people will know me as "that lady with cancer". It does change people's perceptions about you, which can be isolating and lonely, but I suppose I try to change people's perceptions about cancer too, so it probably evens out. 

The one great thing about having cancer for me though, is this. It really focuses the mind, it makes me want to really live and get things done, and although I could never fib and say that procrastination isn't one of the things I do really really well any more because I'm as good at it as anybody, cancer does motivate me to get on and do things that I've spent years dreaming about. 

Like writing a book! Yes, really! I'm three chapters in with nine more to go, and I am so excited about it all. Last weekend I spent three days at a Seminar called "The Millionaire Author's Bootcamp" which has totally inspired me to get going. Each day at the Bootcamp we had 4 motivational speakers each talking for 90 minutes on book publishing or subjects closely related to it like PR, Self-Publishing, Internet Marketing, Public Speaking, Finding a Publisher, all sorts of things. Completely fascinating, and really gave me the kickstart I've needed for ages. 

A lot of the speakers were published authors who were now very wealthy indeed, not necessarily because they had written the best book in the world, but because they had mastered how to really market it successfully on the internet, and then knew how to really engage an audience as a Public Speaker, where they were able to talk authoritatively about the subject of their book and get paid pretty well for it too. These were ordinary, nothing special people, people like you and me, and I just feel that, with the children I have, and the financially tricky situation we have stumbled along in ever since they were born, I owe it to my three to do what I can to earn some money to help them on their way into adulthood. Goodness knows, they have triumphed over so many difficulties already, and they may lose their mum well before they are ready to cope alone; a little bit of a nest-egg behind each of them might make all the difference. 

I've also signed up for two more courses which I can't afford at all - one on Internet Marketing and the other on Public Speaking. The fact that I can't afford them means that I have to work really hard to implement any or all the strategies I'll learn. One of the recurrent themes on the three day seminar last week was to start living like a millionaire ..... well I've certainly been spending like one! At this rate I've have the family homeless and living in a cardboard box by Christmas unless I really make this happen - what better incentive could there be? 

The book is aimed at parents of special needs children, I'm writing the book I wanted to read when Toby was first diagnosed all those moons ago. It's going to cover things like how to deal with the armies of professionals and still get the best of services for your child, how to build a support network of the right sort of help from the right sort of people, how to ensure your other children still have a gloriously happy and normalised childhood, how to ensure you don't go under and drown in the sea of admin - fancy me being the one to be advising other people on how to handle all that paperwork appallingness that comes with the territory of special needs? Ha ha ha, a match perhaps to start a bonfire in the garden? It's also covering education, a complete special needs minefield. 

There are dozens of "advice" books from specialists and experts, but no parenting guidebook that I can find that is written by another parent who has learnt the hard way, by living and doing it. I'm hoping it will make parents like me smile too sometimes, and help them realise that they aren't in this alone. 

Of course it may be a total flop, but if we only ever did things that were guaranteed to succeed there would be no innovation whatsoever. That's another great thing about cancer. A few years ago the idea of failing might have stopped me altogether in case people scoffed and laughed as I made a fool of myself. Well hey ho, people are just so much kinder now, and if I make a complete idiot of myself, they'll just go "Oh well, she is that lady with cancer, you know, bless her". Or at least I can pretend that's what they'll say! 

As well as everything else, we had a great day on Saturday, taking Toby to one of his very favourite day's out, the Lord Mayor's Show. We managed to get a special Disability Pass so that we were able to drive straight through the cordons closing the City of London Roads to all traffic, and then park just yards away from the parade. So it was cold with torrential rain and we all got soaked to the skin, but it was such a happy day, with Toby on Cloud Nine as you can see from the photos. 

And yes, that really is a camel!

Thursday, 31 October 2013

Coke Floats & Chemo: Nursing the NHS back to health

Coke Floats & Chemo: Is the NHS wearing the Emperor's New Clothes?: Twitter and Facebook have worked overtime since my previous post,   NHS Care for Disabled Children , and I've learnt so much more about ...

Nursing the NHS back to health

Twitter and Facebook have worked overtime since my previous post,  NHS Care for Disabled Children, and I've learnt so much more about what's wrong with everything, not just the NHS, but Public Sector working generally. So many people have joined the discussions, from all corners of the issue, and all passionately concerned about the current problems facing the NHS. Old, young, nurses, doctors, patients, parents of young children, chidren of older parents, it has been fascinating. If only we could find a way to harness all the good ideas, and pull together to make it work as brilliantly as it deserves to. 

It seems like the NHS is running on fear, from the very bottom to the very top, all the way to the Central Government, who are probably frightened too,  maybe of spending too much money on it, and of being voted out by the rest of us if they mess it up to much. Fear makes people close ranks, become defensive and terrified of being blamed for any error, no matter how small. Subsequently, mistakes get swept under carpets, and anyone, staff or patient or relative, that lifts that carpet up and points it out, is going to become massively unpopular among those who are frightened of the repercussions. 

So the best thing is to just pretend nothing wrong ever happens. Whitewash it away, don't listen, perpetuate the myth that everything is just fabulous. We've allowed the NHS to develop an "Emperor's New Clothes" syndrome. Every section of the NHS is so complaint-averse that unless we are all prepared to happily sing from the same songsheet that everything's rosy, we will be pushed out in the cold, ostracised, scapegoated and ignored. I know from bitter experience that this happens to patients and relatives, but until very recently, I had no idea it also applies to staff, even very senior staff. 

How does an organisation even begin to improve if it isn't prepared to look at itself with a critical eye, and encourage its staff to do the same in a "how can be do even better" kind of way? Where is the Customer Service approach? Most commercial organisations would encourage whistleblowers to expose colleagues who are working against the best interests of the organisation. 

Decent, hardworking, committed, caring healthcare professionals, the overwhelming majority of the NHS workforce, sometimes feel they are being effectively silenced and marginalised, and are struggling to be allowed to do their jobs to the best of their ability with integrity and professionalism. Thank goodness for them, it is because of them that most of the NHS delivers excellent, life-saving care in a way that makes us all proud and humbled. 

My own experience of cancer treatment over the past 18 months has been a really good example of this. Amazingly caring, committed staff all pulling together to ensure I consistently get the very best of treatment, delivered in a holistically caring manner, with nothing too much trouble along the way. I really couldn't ask for anymore, and had this been my only experience of the NHS at work, I would be blissfully ignorant of any problems, and protectively defensive about anyone who had the audacity to fault it in any way whatsoever.

However, when criticism is silenced, a situation can develop where the very worst of human characteristics can thrive and grow; bullying, intimidation, cruelty, dishonesty and worse. The world needs whistleblowers to keep standards high, particularly in the caring professions, but who on earth would be brave enough to raise their head over the parapet in this environment? There are luckily many very courageous people, but it seems that some have had to pay far too high a price for speaking the truth.

Until this bullying and intimidation is sorted out throughout the organisation at root and branch level, and a new climate of openness and acceptance of human error is encouraged, the NHS is likely to remain in its chronically ill state.

Partly, as well, I feel a finger needs to be pointed at the recent revolution in education. In my previous post, I suggested that perhaps the university training of our nurses is focussing on the academic rather than the caring element of their role. Many nurses have, quite rightly, pointed out to me that we need our nurses to be educated to the highest of levels if we are to consistently improve standards. 

Thirty years ago, though, education was as much about weeding out unsuitable candidates as imparting the correct skills to the next generation of nurses. Nursing training was undertaken by individual hospitals, so there was a responsibility to ensure that all nurses who would carry their hospital training badge into other settings would maintain that hospital's good reputation. This meant that there was an accountability, a real incentive to instil qualities of care and integrity as well as competence alone. 

Recently, not just in nursing, but universally among many training establishments, we have changed the emphasis to ensure as many people as possible pass their courses. Universities and colleges are financially penalised rather than rewarded for drop-out rates, and skills are often assessed in isolation, out of context of performing these skills in a spirit of care and compassion. This means that the trainees who would have been singled-out as unsuitable for their chosen profession in the past and asked to leave the course, are now able to sail on through unhindered towards a profession that really doesn't need them onboard. 

When my children were very young, we were on the circuit for trainee nurses to spent two weeks at home with us as part of their training, shortly after the Project 2000 university style of training had been launched. Over a period of a couple of years, we had about 15 or so girls spend time with us; Toby was profoundly disabled with complex medical issues, and I also had two other under fives, so we were a very good environment for them to learn about nursing in the community, and I really valued the extra pair of hands. Most of the girls (not being sexist, we just weren't sent any young men!) were excellent, enormously helpful, hands on and just about wonderful. Only one let all the others down. One day, Toby was extremely ill and needed my total attention. Another child needed an urgent nappy-change. This young lady was sprawled on my sofa reading a book at the time. I asked her to change the nappy, she replied that she didn't need to thanks, because had I forgotten she'd changed one yesterday so I'd already signed it off in her Skills Assessment Checklist.

I talked to her tutor about the incident, who seemed completely unbothered, and suggested that we don't document it in her records because that might bring her overall marks down a bit, which might affect her degree award. Once upon a time, behaviour of this nature would have had a Ward Sister reading her the riot act.  

It must be about 15 years since this particular young lady qualified, and I often wonder if she, together with her appalling attitude, is climbing the ranks towards the top of the NHS management structure. 

What's also been interesting about the debate since I last wrote is that it's not just the NHS. I've heard stories about education authorities, social workers, housing departments and countless other statutory bodies that would make your hair stand on end. I've got plenty of these stories about both schooling and social care myself, but as I hear more and more with a similar theme I'm beginning to see that while the NHS can be an easy target because we all use it nationally, within local authorities ordinary people are being intimidated and bullied too by the very people paid by the public to serve the very public they are abusing. 

The best bits of the past couple of weeks have undoubtedly been the Facebook chats with other mothers of disabled children. We have mostly developed a very gallows form of humour to cope with our challenges, and the more we exchanged the funnier it became, until we virtually had an entire script for a sitcom that included polishing shovels to bury dead professionals in the garden while our "service users" are "accessing the community" that wants to pretend they aren't really there, and I'm busy dropping dead with cancer in the next 10 minutes too. You probably had to be there to really appreciate it, but it had dozens of us howling with laughter and it just went on for days. 

Tomorrow I'm off on a 3 day bootcamp, to learn how to write and publish a book, or several, and I really can't wait. Not sure if I'll have the stamina to keep going for three whole days including the commute up to London there and back each day, but sometimes you just have to find a way to do the things that you really want to do, and blow the consequences. 

That's one thing I've learnt since this cancer of mine has spread to Stage IV. Time is so precious, I don't know how much more I've got, and if I'm going to write a few bestsellers, and a Miranda sitcom, and sort out the NHS, our education system and every single social worker in the country too, while still finding time for good friends and a lot of laughter, I'd better get my skates on and jfdi. 

Wish me luck!

Wednesday, 16 October 2013

Coke Floats & Chemo: NHS care for disabled children

Coke Floats & Chemo: NHS care for disabled children: The NHS. We all have a view of it, and the received wisdom is that it is a noble institution, a veritable "National Treasure". It ...

NHS care for disabled children

The NHS. We all have a view of it, and the received wisdom is that it is a noble institution, a veritable "National Treasure". It feels churlishly unpatriotic to voice even the most gentle, whispered criticisms, and yet with it hurtling towards financial disaster, and brandished about as both a pawn and a weapon by politicians of all persuasions, constructive criticism right now is an absolute must. 

For the majority of the country, the NHS is there in the background as an insurance policy for when they or a loved one really needs it. Chances are that when they do, it will be short and sweet, and they will be left with an incredibly good impression of an amazing NHS who perform miracles with a ready smile and some comforting words. 

Yes, that version of the NHS does exist, it's alive and kicking and is a total joy to behold. I've seen it for myself time and again with my cancer care. However, for some of us, those of us who parent disabled children, there is often another very different version we also have to deal with, one that leaves us feeling isolated, alone, frightened, marginalised and very, very angry. 

When you are a competent, intelligent parent of a disabled child, over the years you organically become their expert. We can tell by a fleeting expression that a seizure may be imminent, or by the tone of a cough that a chest infection is on its way. We know how to keep our children calm, how a whole sentence can be conveyed in a slight movement of the head of a non-verbal child, and what to do to best encourage them to co-operate with a frightening hospital procedure. We have years of 24/7 on-the-job training and experience, yet we lack the certificate on the wall that we have earned over and over again. 

The very best NHS staff recognise this. They treat us with respect, they ask our opinions and they listen. These staff members are a joy to work with, and it is working "with", because they understand that working in partnership with committed parents will not only secure better outcomes for the children, but it will actually make their jobs a load easier too. Sadly, there aren't enough of these people to go around, which means that a lot of the time we have to deal with entirely preventable and particularly difficult situations. 

Some staff feel threatened by our knowledge and experience. Some seem too insecure to share the decision-making process with us. Some are just downright arrogant and appallingly bad-mannered. This is endemic right across the spectrum from the lowliest receptionist to the most high-and-mighty Consultant Specialist. It isn't everybody, and it's desperately sad that these people are being let down too by their less-than-professional colleagues,  but it's there, loud and clear, a sort of "institutionalised arrogance" that leaves us in absolutely no doubt as to who holds the power. 

These people know we are vulnerable, they know that we are struggling to cope with what is often the impossible, and most of all, they know that it's highly unlikely that we would ever complain. How can we? Our children's health, well-being and sometimes their very existence is completely dependent on the NHS. So we parents struggle on, stoically and silently, smiling through gritted teeth and putting up with the indefensible attitudes of many members of staff. It feels like a very invidious, but far too prevalent, form of bullying, by people who are paid by the taxpayer to deliver care and support to those who really need it, not to make their lives more difficult. 

What they don't know, though, is that we talk to each other. We share stories both of great practice and total incompetence, and most local parents get the measure of their local team pretty quickly. We are not alone, although in a clinic room it can often feel like it. 

A close friend, after a particularly difficult afternoon at a local hospital seeing a very well-respected Paediatrician, wrote this to me on Facebook. I quote with her permission. 

Yvonne, if you ever get a chance to tell  medical professionals what parents really want from them, here's my bit. 

1.    Don't be late for your first appointment.

2.    Introduce the other people in the room.
3.    Listen/look at the child 
4.    Listen/look at the parent.
5.    Have all the notes, in order.
6.    Read the up to date notes before we walk in so we don't have to explain      
the last 13 years every time.
7.    Develop some empathy and use it.
8.    Use your common sense.
9.    Stop ticking boxes, or at least make us feel like you're not ticking boxes.
10.  Announciate your words.
11.  Have some respect.
12.  Realise that no matter how bad the person sitting in front of you says it is, it's 10 times worse in real life.
13.  They probably don't get much sleep.
14.  The person sitting in front of you doesn't get a day off, a holiday and will never retire from the job they do.
15.   The person in front of you is not stupid or less important.
16.   Don't ignore non verbal children.
17.   Lose your ego.
18.   Parents all talk to each other.
19.   We don't like inconsistencies.
20.   Acknowledge my letter or e-mail.
21.   Get your head out of your backside or you'll miss something.
22.   Don't use my child as a guinea pig.
23.   Don't talk to us about the cost of a drug. Our child is priceless, so it's irrelevant

Soon other mothers chipped in too, with things like this: "If you call yourself an Autism Specialist, find out what autistic children actually can and can't do and don't then ask them to do the impossible." "Please don't ever again tell my six year old disabled child that he is naughty", "Don't tell me my Autistic child can't be autistic because he hasn't touched any of the walls yet", "Don't insinuate that I must be a bad parent". The debate went on for days.  Dozens of mothers, all intelligent, sensible and grounded, sharing their stories of how the NHS short-changes our children time and again, and how we smother our anger with graciousness to get the best we possibly can on behalf of our children. 

I am talking specifically from my own experience as a parent of a disabled child. I am sure it is also true of many other cohorts of patients, as evidenced from the number of recent NHS scandals about poor patient care. It feels like it's been a very long time since true patient care was at the core of the NHS values, although there are thousands of individuals working within the NHS who are doing their absolute best, in a working culture that doesn't always seem to actively support their best efforts. 

Has the NHS become too big a vehicle to be able to deliver compassionate care in every situation?  Has the University-led training of nurses promoted an academic framework at the expense of good old-fashioned basic care? Of course we want highly-trained, competent nurses, but kindness must remain at the core of everything they do.  

Are there too many people expecting far too much from an overstretched service, causing an unconscious resentment among some staff members? Do we as a nation love the NHS so much that we have put them on such a towering pedestal and given them so much glory that they can, in some thankfully extremely rare cases, literally get away with murder?

We have to ask ourselves some difficult and painful questions. We have to share experiences and ideas. We have to expect the very very best from our National Health Service. They are public servants. We are the public.  The dynamics need to shift towards a better quality of care for everybody, with a zero tolerance of poor care and unprofessional standards. Patients should be able to feel safe in complaining about poor service, without fear that there will be a closing of ranks and a universal hostility towards anyone who has dared to speak a less than popular truth. 

The politicians pontificate about the state of the NHS and what can be done, yet many of them have private medical insurance and little if any experience of service delivery at the coal face. Nobody ever asks us what could be done to improve things. Give me a bunch of 10 mothers of disabled children, and we'd give our best shot to have it working efficiently and effectively within days, with a complete change of culture among staff too. Lets face it, with the crises we face on a daily basis with our children, and the breadline poverty levels on which most of us survive, sorting out the NHS might be a piece of cake with icing on the top!

The bottom line is that care costs exactly the same, whether it's good care or bad care. In fact good care is more cost effective because fewer mistakes are made and it's more likely that the right decisions will be made from the very beginning. 

I always thought things couldn't get any worse when Toby was still under the Paediatric Team, being cared for by sometimes as many as 14 different Consultants, each only interested in a particular mechanical part of him. So much for holistic care. As he got older, it got better, and we were only seen by 8 regular Consultants. By then, I'd managed to cherry-pick the very best ones, and he had an excellent team. Toby's condition is so rare that he is the only known person in the world with it, which meant that we always saw the Consultants themselves, with each one wanting to see him at either 3, 6, or 12 month intervals. It was tough going sometimes, with an appointment at least once a week, but at least we knew nothing would ever be missed. 

Well, as he turned 18 last year, one by one, they each discharged him to the care of his GP. This was scary enough because our GPs just don't really know him; Toby saw Hospital Consultants so often that we've barely had to visit our GP at all throughout his childhood. Whenever Toby has been poorly, he has crashed so fast that he's had to go straight to hospital.  

Those frequent hospital visits are now handled by our GP Practice. That will work for acute health issues that present in a way that are obvious to others, but Toby needs more than that. He is non-verbal, he is severely intellectually impaired, and he has means by which to communicate on-going but invisible pain or any new symptoms he may have developed. More significantly, this reduction in the constant monitoring of his health will coincide with Toby leaving home and moving into a care facility. Even the very best carers won't have the experience or intuition to spot the nuances of any change in behaviour that I might notice, which could signal a health concern. 

What do we get instead? An annual event called a "Learning Disabled Person's Healthcare Check", an annual event. So the kid-glove monitoring he's always had by seeing a Hospital Consultant every week or so has now been reduced to once a year.  Last week I discovered that these annual checks aren't even handled by the GPs themselves. Not even by the Practice Nurse. No. A Healthcare Assistant, with no training and only a few months experience carried it out. The outcome? They have told Toby to eat healthily and take exercise. Great advice for a young person who is gastrostomy fed and whose mobility is so reduced that he is part-time wheelchair user. 

Words for once have failed me completely. 

So over to you, what do you think? What are your experiences of the NHS, good and bad? How can we work together to make the NHS something we should all be incredibly proud of once again? 

I love the NHS, I know that without it, neither Toby nor I would be alive today. I love it enough to want it to be the very best it can possibly be. 

A few months after I wrote this, I wrote a book called The Special Parent's Handbook, to try and make things easier for the next generation of families with disabled children. In it I've shared everything I've learnt in how to make things easier, particularly when working with the team of staff who support our children in education, health and social care. 

It is now also being widely read by those who work with our children, and I've had considerable positive feedback from these professional members of staff about the book, and how it's helped them to better understand the issues facing families like my own. 

The Special Parent's Handbook is available on order from any bookshop or from Amazon, and there's a Kindle version too. Here's the Amazon link if you'd like to buy it. 

I also have two Facebook Pages, both posting the very best information, support and news, one for those interested in issues concerning disability,

and one for those with an interest in cancer, 

It would be great to see you there! 

Monday, 7 October 2013

Coke Floats & Chemo: Acceptance with a Big Heart

Coke Floats & Chemo: Acceptance with a Big Heart: I'm back. Lots of reasons have kept me from writing for what seems like ages; temperamental laptops, total exhaustion, health news shock...

Acceptance with a Big Heart

I'm back. Lots of reasons have kept me from writing for what seems like ages; temperamental laptops, total exhaustion, health news shocks, and loads else. Where do I start? Health news, I suppose. Over the past few weeks I've heard the very best of possible outcomes prognosis-wise, followed moments later by the very worst of outcomes. To be honest I've spent a lot of the past few weeks reeling with shock and trying to get my head around very conflicting information. Yes, I've had moments when I've been lower than ever, then moments when I'm just totally resigned to whatever will happen, then moments of anger at myself about my resigned acceptance, because that just feels like giving up and pointing your toes in the air. Anyhow, it all seems to be OK now, and we're back to that old chestnut with cancer - I might die soon or I might not, but I'm hovering at a comfortable balance at the moment and nothing too dramatic is likely to happen this week or next. They call it stable, whatever that means.

Some cancers are fuelled, either totally or partially,  by a growth hormone called HER2, and about a decade ago a really exciting new drug was launched, Herceptin, which blocks this HER2 and so the cancer can't grow. My cancer was partially HER2 receptive, so yippee, I got it, the standard treatment of one year, every three weeks via a drip.

Then I got even better news. Remember the shock when they told me the cancer had spread to my spine and that meant that it was now incurable, and prognosis was very confusing? Well according to the latest PET scan results, something really absurd had happened - that little dot of spine cancer had actually got a tiny bit smaller!! Double yippee! The doctor explained that there seems to be a very small group of women who seem to react remarkably well to Herceptin, and they think that I'm one of this incredibly lucky group. There have been clinical trials offering certain groups of women Herceptin for longer than the year long treatment, and some are doing so well they've been on it for more than 5 years. They tentatively told me that they are considering leaving me on it for at least another year, and possibly just keeping it going until it doesn't seem to be working any more. However. There is always a "but", and in my case it turned out to be an enormous one.

Herceptin blocks HER2 which is great news as far as cancer goes, except your heart also has HER2 receptors, and stopping the HER2
 working properly in your heart can cause pretty serious heart damage. I have a heart scan every 3 months to make sure everything is still looking good, and this time it wasn't.

So with barely time to draw breath, never mind cartwheel across the consulting room, the lovely doctor had to explain all that too. Talk about giving you something with the left hand and taking it away with the right. If my heart is damaged, it means absolutely no more Herceptin, which almost certainly means premature death.

It was six whole weeks of wait and wonder before I was booked into a full day of horrid heart tests at a specialist unit. During this time, they decided I could have one dose of Herceptin, and something really odd happened - just as it started I had a funny turn, and doctors got called, and everything got stopped. My blood pressure was through the roof at 190 over 120, and nothing was looking very good at all. So on top of everything else, they have now put me on beta blockers too.

Anyhow, the heart test day was not a good one, lots of needles, lots of horridness, but it was all so worth it in the end. My heart is OK. In fact not just OK, pretty flaming marvellous by the way they were talking. Apparently it's a little bit enlarged which they don't seem to be worried about, but then it's surely much better to have a big heart than a big head. Hope to goodness I don't have both.

There has been a stack of other stuff going on too, stressful stuff, funny stuff, sad stuff, happy stuff, but telling all of it would run to a War and Peace length of prose. The kids are all moving on and growing up, far faster than I ever thought would happen, but this is bringing the odd moment of sheer terror too, and it does seem like we are lurching frotvm crisis to crisis almost on a daily basis. I really wish I was the type of person that loses weight with worry - if there was any fairness in the world I've had enough worry of late to be a perfect size 6.

One of the things that has happened is that my eldest beautiful, clever, talented, witty, kind caring daughter has taken herself to Italy all by herself for a few months. It happened suddenly, one Friday evening, when she bounded downstairs, leapt onto the sofa and told me she had found herself a new job. To start in a few days. On a beach in Sicily, keeping 5 small children safe on their holiday. Francesca hates beaches, the heat and being in the water. Or at least she always has up until then. Off she went, and I was a total amalgam of fear, pride, pleasure and more fear. Oh and I blubbed for England as her plane flew away. Adam was lovely - he took me in his arms and said "Don't worry Mum, she'll be back home again soon". "Not if she falls in love with an Italian, marries him and has his babies" I wailed. He laughed. "Mum, this is Francesca we're talking about. Who on earth would want to marry her?". Little brothers, eh?! But it did make me laugh.

So that's why, last week, WM and I flew off to Rome for 3 days. She has totally fallen in love with Italy, and is now doing an intensive language course just off Piazza Navona. My baby girl, I just had to be with her for her 21st birthday on Wednesday.

Fabulous time, fabulous food, and so brilliant to see her and spend loads of time catching up on all the gossip, news, events and just putting the world to right together. It was also really special to spend proper stop-still-and-stare time with WM, who has just been totally rock-solid in his love and support through every moment, good and bad, since this whole cancer chapter began.   We stayed at a Hotel overlooking the Trevi Fountain. The views at breakfast were just beyond amazing. Odd though, because although no one knew I had cancer which was fairly liberating, I just felt so old, and tired, and weak for so much of the time, and the walking was so painfully hard, particularly on the cobblestones, that I felt the cancer was there pointing it's finger and laughing at me the whole time. I was last in Rome only 4 years ago, but I felt 200 years older, and I just couldn't do what was effortless before. It's been a bit of a wake-up call. a realisation that this is how it will always be now. More taking on board, assimilating and accepting, but it will be OK. There was a definite upside, though. For the first time in my life, I wasn't a gibbering wreck as the plane took off. It's this whole acceptance malarkey again, whatever will be will be, and potential plane crashes just don't seem nearly as scary anymore.

Next time I write, I'll post some lovely photos of Rome, but before the family starve to death,  I'm now off to create yet another new dinner with an Italian twist - Shepherd's Bolognaise.