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 . 


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: 

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:

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:

If no link appears it may be due to your AdBlock settings

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

Monday, 5 May 2014

Coke Floats & Chemo: Dancing not Drowning

Coke Floats & Chemo: Dancing not Drowning: Writing the book was the easy part! It's what comes next that is complicated, full-on and the real hard slog. There's no point writi...

Dancing not Drowning

Writing the book was the easy part! It's what comes next that is complicated, full-on and the real hard slog. There's no point writing a book if nobody reads it, not because it might be a rubbish book but because they never got to know about it at all. So it's the PR, the internet marketing, the social media presence that's where the real work happens, and there's no other option but to jump straight into the deep end and hope to goodness that you don't get drowned. 

It's fun though, but very full on. I did nearly drown for several days when I was trying to create a website from scratch. Trying to get and the website hosting service to link up and make friends was far more than my little brain could cope with, and I was climbing walls in tearful frustration for days. Then I found the answer - they had sent me an email days beforehand which I had thought was spam because they unhelpfully didn't mention either of their organisations' names in the email title. With 21st century technology, it's always those tiny little things that just don't quite meet up that completely that do my head in. 

So, I've now got the beginnings of a website. Not the best one in the world, but I've never been prouder of anything because it really does represent blood, sweat, tears and goodness knows what else. It's also a "work-in-progress" - there is stacks of room for improvement, but if you'd like to see it before it becomes simply marvellous (ha ha ha) here's the link :The Special Parent's Handbook Website.

I've also set up a Facebook Page, again called The Special Parent's Handbook, and here's the link to the Facebook Page.

Then yesterday I did another You Tube video. Hilarious. Not. It took about 8 takes with WM creatively constructing another tripod from all sorts of things around the house. if you haven't seen the blog post about his previous attempt here is it: How Not to Film Videos .

It's worth a peep if only to see the photo of the bonkers tripod itself. We managed it in only 8 takes this time, mostly techno nonsense but Take Number 7 is a classic - just as I was saying goodbye after a word-perfect performance, the best one I'll probably ever manage, literally 2 seconds before the very end, Adam forgot we'd told him what we were doing and he barges in through the door only wearing pyjama bottoms and calling "Mum, where are you?" rather loudly. We have it on camera, including the bit with me failing to maintain my professional dignity and losing it completely.  WM and Francesca are threatening to post just those few seconds on Facebook. It really is very funny now, but I couldn't find a funny side at the time. 

In the video I read a bit of the book, an extract which looks at how frustrating it can be when you are a medically-savvy parent of a complex needs child during the Doctor's Round on a hospital, when it's sometimes hard to have your concerns taken seriously and listened to properly. 

Me reading from The Special Parent's Handbook

The best bit of the whole new world of publicising the book is the amount of goodwill and friendship there is online. People I've never met are banging the drum for me, holding my hand through all the stuff I'm such a novice about, and the warmth and enthusiasm for the project is simply astounding. 

I can barely bring myself to watch the video, I just cringe at both the way I look and sound, but then one completely lovely "virtual friend" sent me this tweet last night which I absolutely love to bits! 

@SpParentsHbook definitely cute.. and cuddly.. I wanted to get a hug from you :-) You looked like just the mum everyone would want to have x

There's still so much to do, and I've barely started the whole publicity and internet marketing stuff yet, and already the book is making loads of pre-order sales on Amazon. They stock 20 million books, and even though my book isn't actually being launched until the 2nd June, pre-orders are selling so well that it's spent a lot of time in the top 10,000 most popular books, and it even got to rank at being the 2,740th most popular book on the whole of Amazon for a few hours the other day! OK so it's not in the top ten yet, but I was still leaping up and down with excitement. Today, I even got an email from Amazon to order a consignment of books from me, and I wanted to spend the whole morning singing and dancing about it.   

It's also lovely to have an Amazon page and an Author's page - I can't quite believe how much fun this can be sometimes! If you want to have a look, here's the link: The Special Parent's Handbook Amazon Page.

Oooh, I've just realised that the past few days of tearing my hair out over websites and technology must have paid off - I've never before had so many links, a You Tube video AND an embedded tweet in a blog post before. Best of all, I haven't mentioned cancer once, even though it's the horrid PET scan day tomorrow.  I'd better go off and dance around my kitchen again in celebration!