Thursday, 24 April 2014

Coke Floats & Chemo: Two boys, a book, a baby & a birthday

Coke Floats & Chemo: Two boys, a book, a baby & a birthday: It's been a great week for me, and I haven't bumped down to earth yet! Firstly I'm a Grandma. Here's a picture of my baby bo...

Two boys, a book, a baby & a birthday

It's been a great week for me, and I haven't bumped down to earth yet! Firstly I'm a Grandma. Here's a picture of my baby boy with his very own baby boy, and every time I see them together I just nearly burst with pride.




Then it was Toby's 20th birthday, and he came home for 2 whole glorious days and nights and we threw a Birthday Party for him too. He moved into the lovely Residential Care Home across the road 8 weeks ago, and although we see him nearly every day, he has struggled with homesickness, and there have been some heartbreaking moments which have been really tough. 

About a month beforehand, someone told him he would be coming home and that it was his birthday soon. Ooops. Toby is the undisputed Birthday King of the Northern Hemisphere, but with his severe learning disabilities he simply cannot comprehend time and waiting. He got very stressed, and wanted to come home for his birthday every single minute of every single day for the whole next four weeks. His teacher at college was brilliant, she made a calender with little pictures of him in his new house on velcro, one for every day, like a non-Christmas Advent Calender. Then there were two pictures of  "Mummy's House" at the bottom of the calender, and he had to pull each picture off, one by one, every night at bedtime to help him understand the timescales involved.  

This helped enormously, but it was still a very long few weeks to keep him happy when all he wanted was "Presents", "Party", "Birthday", "Candles", "Cake". He doesn't have many words, he can't have a conversation, but when it comes to birthdays his vocabulary is as good as anyone else's! 


Here is a photo of a very happy Toby at our house on his birthday. Adam is holding onto him tightly so he didn't set his hair alight when blowing out the candles. You may also notice our family tradition - a cling-filmed cake. This ritual started many years ago, when Toby, who blows out candles so magnificently well and with such gutsy enthusiasm, would always cover the cake in so much saliva that no one would want to have a slice.

We were all rather concerned about how Toby would react about going back to his new home after his couple of days at home. The manager of his care home came up with a lovely idea - they would have another Birthday Party for him the minute he went back ....... smart move! 

Best of all, Toby seems to be in a completely different mindset now. He's been home to Mummy's House, he knows that he can come home again, he knows that everything is exactly in the same place just as he left it, and now that he's back in his new house, he's just somehow loads more settled and happy. So it's taken a while, and I can't be sure that we're definitely out of the woods entirely, but he seems to understand and be fine about his major life change. I can't tell you how proud I am of him too. His resilience, good humour and resourcefulness in coping with major changes puts most of the rest of us in the shade. 

Then, on top of Adam's news, and Toby's successful settling in, something else has happened that is like the icing on the cake with the cherry on the top for good measure.

The Special Parent's Handbook is available to pre-order on Amazon already! 

It's really exciting to see the book cover, my name and my very own Author's Page, there for the whole world to see on Amazon. It was hard to stop grinning for a day or so when I first saw it there, and my grin got even wider when I realised that it's selling really well already! 

If you want to see it there yourself, here's the link to the relevant Amazon page:

The Special Parent's Handbook - Amazon Page

So, who should read it? 

I've written it primarily for any parent whose child is different. Those differences may be disabilities, serious illnesses or a child who is a little bit quirky. All three of my children have disabilities, and one of them had a series of life-threatening illnesses. Along the way I've learnt so much, and I've basically written the book I wish someone had been able to give me all those years ago when I was struggling to cope and close to the edge.

 In the book I share the strategies that have helped me cope with the relentless 24/7 round the clock caring on very little sleep. I also share the coping mechanisms I eventually learnt to adopt so that I was no longer crushed and undermined by every professional at every meeting. These are the the very professionals and the endless number of mindless meetings that were supposedly there to help me manage, but which often, instead, just piled on intolerable extra stress and ate away at my confidence. I've written about how to tame and harness the never-ending related paperwork that goes with the territory of children with disabilites. Most of all, I put the children at the very centre of the book, because above all else it's all about them, and  how to make sure all your children have the happiest possible childhoods as well as how to get the very best services for all our children. 

I've had to learn the hard way about bringing up children with difficulties, and with no rule-book or guidelines to help me know what to do next and how to do it, I largely made it up as we went along. It was seldom easy, but we still had a lot of fun on the way through their childhoods. It was tough, and with the public spending cutbacks already having a severe impact on the vital support that families like ours rely on,  things can only get harder for this next generation of parents. It would be great if reading my book could take the pressure off and lighten the load even a little bit. 

I think you'd also enjoy it if you work with children with disabilities. I hope you'd learn a little too, and get a good insight as to how very bleak things can sometimes seem behind our closed doors, even when we are determined to put the brightest of faces on our circumstances. I've been very honest about how the services designed to help often simply don't join up, and how tiny little mindset changes could make all the difference. So often it's not about spending more money. It's often the smallest no-cost or low-cost little tweaks that can transform lives and make everything easier, but no one ever thinks of them, or thinks to ask those of us on the front-line for our thoughts and experiences. 

The book is also the story of my family and what's been thrown at us and how we've coped. I hope there are funny bits in the book, I find it so hard to be serious for too long, and sometimes the humour just creeps out onto the screen all by itself while I'm typing. 

A handful of people have already ready it, and the feedback has been incredibly encouraging. Rosa Monckton read it and has written an amazing Foreword in the book. Her writing is passionate and powerful, and Rosa goes so far as to call the book "A story of our Time". Rosa has been so encouraging and supportive throughout, and she simply couldn't have been kinder to me. 

There's still a load to do before the book is available to buy. I'm trying to get my head around setting up my own website following a step-by-step guide I bought on Kindle. I've somehow developed a completely pointless daily routine in trying to get the website up and running, whereby  I stare at the screen, stare at the Kindle, then stare at the Keyboard, then I repeat these three steps all over again, hoping against hope that something will happen. Nothing's happened yet except for another layer of confirmation that I'll never be a techie. 

Then there's the whole PR stuff to do, and Rosa has very kindly offered to help me out with that too. I'm a total beginner, but  I'm actually quite looking forward to this aspect of the whole thing. I've already got a few definite interviews in the bag and I haven't even sent out one press release yet never mind a review copy of the book itself. The review copies of the book itself should be here by the end of next week and then they need to be sent off to journalists and the like who may be interested in the book.

Somehow I have to make the website come together before I can move onto the PR side of things, so hopefully the penny will drop and I'll suddenly master the language of gobbledigook. 

Finally, it's setting up a Facebook Page especially to support the book, and making a really important decision.  Should I have a Book Launch Party, and if so where should it be? It would be loads of fun and a great way of saying thanks to all the people who have helped, but can I afford it and would it actually help to sell more copies of the book? 

So altogether a wonderful week, even though it's nearly that miserable "remember I've got incurable cancer" time, with a PET scan looming followed by those horrible few days when I convince myself they'll have found I've now got cancer everywhere. I successfully manage to tune out the whole cancer stuff most of the time, but the reality is that it's lurking there in the shadows of my very being, and one day it will decide to rear it's ugly head all over again and come out to play Russian Roulette with my life. I just hope it gives me time to write a whole stack of books before it starts taking me over. Fingers crossed.

PS Francesca wants the world to know that tomorrow is a mega day for her too. She is going to see McBusted at the O2 arena. Busted and McFly were her first loves, and 10 years ago, not only did we go to Wembley to see them when she was only 11, but we also met them for real when a neighbour managed to get us tickets for SMTV Live, the Saturday morning kids show. I was a grown-up woman, already well past my prime, but I went just as jelly-kneed and star-struck as any of the 11 year olds there watching with me. Tomorrow, Adam's going with her instead of me, because I'm just not well enough anymore to be a proper teenybopper, and anyway, I'm saving myself for The Osmonds in the summer.  I'm not sure Adam really knows what he's let himself in for, but I just hope they have a fabulous time out together. They certainly know all the words because they've been singing their hearts out to all the songs all the time I've been writing this! 

Friday, 11 April 2014

Coke Floats & Chemo: The Book Cover Preview

Coke Floats & Chemo: The Book Cover Preview: The book cover is designed, and the entire book thing suddenly feels a whole load more real. It will be on sale in about 8 - 10 weeks, with ...

The Book Cover Preview

The book cover is designed, and the entire book thing suddenly feels a whole load more real. It will be on sale in about 8 - 10 weeks, with the first advance copies in my hand in about 4 week's time. Many thanks to the photographers, Richard Bloomfield who took the shot of Toby in 1996, and Rachel Raphael who took the other two gorgeous photos. The impression we've tried to create is to show that, against all the odds, Toby made it all the way through childhood. Even though it was sticky, he was and still is happy. The shot of him covering my face is to demonstrate that he can now do some of it without me, and that's how it should be. Independence is what every parent wants for their children, even if Toby, with all his difficulties, is developing a different version of independence.

Francesca and Adam, whilst very happy to be included in the book itself, were absolutely adamant that they were not going to have their photos on the cover! It's such a shame, because they are both every bit as gorgeous looking as their brother, Toby! Hey ho, never mind! Maybe the next one, eh?!



Tuesday, 1 April 2014

Coke Floats & Chemo: Being a cancer patient

Coke Floats & Chemo: Being a cancer patient: Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right imp...

Being a cancer patient

Today I was a patient, and I'm just not any good at it. I hate it, loathe it and although outwardly I'm good at giving the right impression of stoical gratitude and forebearance, inside I'm desperately trying to prevent my true feelings of stroppy petulance leaking out all over the place. 

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

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

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

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

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

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

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

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

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

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

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

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