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.