Tuesday, 3 March 2015

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...

Sunday, 1 March 2015

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 


Friday, 9 January 2015

Coke Floats & Chemo: Needle-phobia - a major cause of premature death?

Coke Floats & Chemo: Needle-phobia - a major cause of premature death?: Needle-phobia and Cancer I've got needle phobia. I've explained all about why I developed it and how it affects me in a previous b...

Needle-phobia - a major cause of premature death?

Needle-phobia and Cancer

I've got needle phobia. I've explained all about why I developed it and how it affects me in a previous blog post My Needle-Phobic Past  . If you read it you might get an inkling into how terrifying it is for someone like me to cope with a hypodermic needle. I've also given Keynote Speeches at a number of Medical Conferences on the subject. Most people regard needle-phobia as ridiculously laughable and trivial - I can assure you it's not. 

I also have Stage 4 Cancer, the incurable version of cancer that has started to spread and will inevitably kill me prematurely. It means I have been on continuous cancer treatment for nearly three years and I'll be having treatment for the rest of my life. The only reason they will ever stop it is if the cancer has won, and there will be nothing more they can do. That's the reality of my life. It's not how I wanted it to be but that's how it is, and I cope with this knowledge by refusing to focus on it, and enjoying every day as much as I can. 

However, continuous cancer treatment and needle-phobia together isn't a great combination, and over the past three weeks they have joined forces and completely floored me. It's a long time since I've felt low all the time like this, and coinciding with Christmas probably made it all seem even worse. 


PET Scans

When you have cancer that's as life-threatening as mine is, you need a PET scan every 6 months so they can keep an eye on how it's progressing. That's how they can tell how to treat it. They aren't able to cure me, now it's all about prolonging my life, and I'd like them to be able to keep me going for as long as they can. For the PET Scan to work they have to inject a contrast solution into my bloodstream. 

For every single other injection, blood test or intravenous procedure I need, I have a Portacath fitted which they can use. The Portacath is a permanent medical device sewn into my muscle under my skin, that connects with a major vein just before it reaches my heart. They still have to pierce the skin with a needle to use it and I don't really like them doing that at all, but somehow I manage to keep my needle-phobia under control as far as the Portacath is concerned. I still need a mild sedative beforehand as well as some local anaesthetic cream, but somehow the Portacath doesn't really trigger my needle-phobia response in the same way as hypodermic needles do. 

However the PET scan injection is different. They have to fit a cannula into a tiny vein in my foot. Except I have the worst veins in the world, and a cannula simply won't fit. So they try again and again until I'm in such an awful state that they decide to stop trying any more. 


What happens

Despite my needle-phobia I really do everything I can to co-operate.  Just like every other patient I turn up, I stick out my arm or my foot or whatever, I  grit my teeth and I never complain. I also always warn them that I will become extremely distressed but I ask them to ignore it, and to do what they can to just go ahead and do what they really have to do. 

Then it happens. A harrowing howling noise somehow comes out of my mouth and doesn't stop, followed by sobs that make my body shake, and eventually the sobbing stops me being able to breathe.  Even though I've always warned them about my reaction, the medics  always look at me like I'm a madwoman.  They don't meet many of me, and although they try to be sympathetic they find it very hard to get their heads around. While I'm howling in terror they're often gasping in horror - not a great start to working together to find a way through this. 

Interestingly, I have never asked them to stop, it's always their decision to call it a day and say that enough is enough. By that stage they have often made several unsuccessful attempts to insert the cannula, and I'm in a terrible state. 

So I don't get the PET scan. Instead I'm given a new date to come back and go through the whole ordeal all over again, and the cycle goes on and it feels like I'm being set up to fail all over again. In my case, it's almost a year since I last managed to go through with it. Meanwhile what on earth is the cancer doing inside me?

I had another awful PET Scan attempt the week before Christmas, and I was given a date to do it all over again two days ago. In the intervening three weeks I couldn't stop bursting into tears every single day.  I don't cry normally - hardly ever, but something has happened and I just can't think of anything else apart from the terror of the whole caboodle, and now the sheer dread that meanwhile, the cancer might be advancing like crazy and nobody knows, and by the time they find a way to do this scan it could be too late to throw any new treatment at it, and that will be the end of me. 

So I turned up earlier this week and guess what? The whole thing happened again. 


Embarrassed and furious

I'm furious with needle-phobia. I'm furious at myself for my inability to cope with needles, and I'm beginning to get frustrated at how needle-phobia is so poorly understood among healthcare professionals too. 

I've done everything I can think of to try and overcome these fears. I understand the science and the necessity for these procedures, and I do everything I know how to to make it happen despite my fears. I know that my behaviour may also be distressing for health professionals so I do everything I can beforehand to explain what's likely to happen. I'm always as co-operative as I can be, and because I understand the importance of what they need to do I always keep appointments and I do all I can to be courteous, polite and compliant. 

Needle-phobia is a stupid, crazy, irrational fear to have, and I think it must be the most embarrassing of all the phobias. I've done everything I can think of to overcome these fears - I've had counselling and I've also read extensively about intravenous access procedures hoping that a better understanding might lessen the fears. I've also had hypnotherapy, EFT, NLP and about a dozen other types of therapy, but absolutely nothing shifts it. 


The medical perspective

Needle phobia is an accepted medical diagnosis, but doctors and nurses have no training about it, and they simply can't fathom how debilitating and real it is. To them, blood tests and intravenous injections are a minor and routine backdrop of their working lives - they can't get their heads around the fact that some people like me are simply terrified. People like me and people like them are poles apart in our experiences and our thinking, and it's telling that I've been having these reactions over and over again at the same hospital, yet every time they are bewildered and shocked, and I'm bending over backwards with my grovelling apologies. The look in their eyes is often as hard to cope with as the needles are. I feel judged, I feel belittled, and I feel pathetically stupid. Sometimes I even feel their disparaging pity. 

I'm not a wimp. I coped with a radical mastectomy with barely any pain relief. The cancer treatment itself affects my joints causing severe pain and a huge reduction in mobility, but I just accept it and get on with it. I don't allow cancer to take centre-stage in my life and there aren't many people with a more positive attitude than I have. I'm a strong, feisty, intelligent woman.... until it comes to needles. 

I'm not alone, but I am unusual. Most people who have the type of extreme needle-phobic reactions that I do simply don't accept medical treatment. They don't make appointments with their GPs to talk about new lumps or bumps or other symptoms. They can't engage with the medical profession, so great is their fear of needles. It's sometimes called "White Coat Syndrome", and we all know people who claim to "hate hospitals". These people never get diagnosed, their conditions go undetected, and they fade away and die quietly at home, or they get discovered and diagnosed when it's too late to save their lives. Needle Phobia is thought to be one of the major causes of premature death, but these people's medical histories are missing from the statistics, so nobody knows for certain how big the problem really is. 


What would help

I know exactly what I need. I need a very heavy duty sedative that will render me virtually unconscious, the sort of thing that some dentists use for nervous patients. My son, Toby, is severely learning disabled, and in the past I've been with him when he's had drugs like Midazelam or Rohypnol to knock him out during difficult and traumatic medical procedures. They've worked a treat, and I know that's exactly what would make it all doable for me. Yet the doctors don't agree. They can't see why I could possibly need something so strong for what they consider an extremely minor medical procedure. I wish I didn't need it but I do, and they can't believe that I'm really that pathetic. I've offered to pay the private prescription charges for any such drug, but they just can't understand how anyone could possibly be that seriously affected by something so incredibly minor. 


Facts about needle-phobia

Yesterday I googled Needle-Phobia and this is what I learnt. 


  • I'm not the only one - between 10-20% of people have varying degrees of needle-phobia. 

  • Many needle-phobics are so frightened of needles that they make an active choice not to have medical treatment, or to go to the doctor with any symptoms. 

  • This 20%  figure correlates with the percentage of the population who do not take part in medical screening programmes. For needle phobics turning up for a health screen might lead them needle-based procedures, so they simply don't go

  • Even in life and death situations, many needle-phobics cannot overcome their fears to receive treatment. Many needle-phobics choose not to engage with medical interventions at all. Needle-phobics choose death instead of needles.

  • For many needle-phobics, life-threatening medical conditions go undetected and therefor untreated because they cannot engage with doctors

  • These people don't WANT to die. They just can't face needles so death can become inevitable

  • It is also believed that needle-phobia is up there with the major causes of premature death. However, it's impossible to collect data on this hidden problem, because researchers can't count people who don't turn up

  • There is very little written about needle-phobia. Most people who have it are too embarrassed to write about it, and most medical professionals don't take it seriously enough to write about it either. 

  • This means that the blog post I wrote in 2012 is still one of a tiny handful written by patients  My Needle Phobic Past . 

  • It's a neglected diagnosis, partly because health professionals can't really believe it exists, and partly because the people who have the worst cases of it steer clear from doctors and hospitals. 

  • The initiative to put it on the map has to come from patients themselves, because there are certainly no plans by the medical profession to put it on the agenda. It's up to people like me to talk and write about it as much as we can. I've written a load about it already, and I've been a Keynote Speaker on the subject at Medical Conferences. I've come out of the closet, so to speak but many people find it really hard to own up to because, let's face it, it's extremely embarrassing to admit to having something that is regarded as being laughably childish and trivial. I promise you it isn't. 

What's next?

So where does all of this leave me? A lovely doctor rang me at home yesterday to talk about it. Unfortunately, I couldn't talk to her because I couldn't stop crying, so Malcolm took over the phone call. I've since been able to send her an email about how this whole thing affects me, and she will be talking to the team in the next few days. Meanwhile she has suggested that I have a CT scan instead, which means they can use the Portacath to inject the dye. Whether or not a CT scan is detailed enough to catch any advancing cancer cells in time is something I've asked about in my email. 

I had accepted that I was likely to die of cancer, but perhaps instead Needle-Phobia will be the true cause of my death. I understand why people choose not to be treated - the terror I feel is indescribable. The past few weeks there have been times when I've seriously considered walking away from treatment altogether. I've also had times when I've been convinced that I can feel the cancer growing - every ache and pain and the cancer paranoia takes over. For several days around Christmas I had this sense of certainty that I wouldn't be here to see next Christmas Day, and then I got a really nasty bug and I was too ill to even register that it was New Year, never mind party all night long.  That was a bit of a positive wake-up call. I now have to stay alive for at least the whole of 2015 because I can't possibly allow such a damp squib of a New Year to be my last one ever! 


It hasn't all been bad

So now it's time to find where that mojo of mine has been hiding and get it back up and running as quickly as I can. There have been some great things happening - last week I was on the radio twice which was mega-exciting. Radio Two on the Jeremy Vine show no less - and he is every bit as lovely in real life as I always hoped he was. I was also on the BBC World Service the evening before, both times talking about cancer and whether it's a good death or not. Generally speaking, that's not something I even think about, instead I focus on the good life I love, cancer or no cancer, but it was a very interesting debate, and hopefully nobody suspected that I was in the middle of a huge downer for me. 

Other good news is that Adam, my youngest, started his first grown-up job this week! I'm so proud of him I'm positively beaming. I've also been working on designing a range of Parent Workshops that will support and empower parents like me who have disabled children, based on the themes from my book "The Special Parent's Handbook". I was thrilled to be back on the Number One Bestseller slot on Christmas Day itself for my book category. A Christmas Number One, eh? Just like the Beatles! I'm also planning the next book - this time it will be about coping with cancer - and I'm hoping it will be every bit as uplifting and joyful as my first book seems to be. 


Online Community

One of the very nicest aspects of having written a book is the wonderful people I've been privileged to meet, both in real life and on line. On the Facebook Page I set up to support parents of disabled children, I'm the one being supported this week. I've had so many lovely messages of good will and friendship from some fabulous people there that at times it feels like I'm being carried along by an army of well-wishers. 

I was also honoured beyond measure to be invited to take part in Michelle Daly's Warrior Mums project as their special Christmas Feature. Michelle even had me going on a lovely nostalgia trip finding old childhood photos - now that's really a strange experience to see your 3 year old self looking straight at you from a computer screen. 




The other thing about this whole needle phobia stuff is that it's given me an excuse to come back and revisit this Blog, the one where the cancer writing happens. It's been a long six months or more and I've missed it - but I've had to concentrate on the other blog posts which are part of the official book website www.yvonnenewbold.com . 





Toby

Of course nothing is ever plain sailing - another difficult happening during that week before Christmas. Toby's care home have asked me to find somewhere else for him to live. Back to the drawing board, more trauma, more upset, and a huge responsibility to find exactly the right place where he can be happy and settled for a very long time. Poor Toby, he has absolutely no way of understanding any of it, and he's got to face another major upheaval. Right now, he needs me more than ever, on the ball and on the case to find the very best care home in the world for him.  I've got to find the motivation and a new perspective quickly, I've been floored for far too long, and maybe Toby will succeed where the doctors haven't managed to yet - he'll have me bouncing back in no time. 





Friday, 20 June 2014

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.