It's almost the end of term. I've marked all the assignments and caught up on all the paperwork (I think). I've even finished proof reading a brilliant novella by James D Quinton which I very much enjoyed. 


Now it's time for me to get back to my own writing. 


I ought to feel excited, enthused and full of anticipation. Instead I feel trepidation, anxiety and a little bit of fear. 


I know the rule is to just write; forget about the inner critic, where the work is going, who will read it, how it's going to develop...all that stuff. Just write. That's what I tell students and anyone else who sits and listens to me for long enough. Just write. 

Set aside time each day. Switch off your mobile phone. Disconnect the internet. Close the door and tell everyone you're not to be disturbed. Do this every day for one hour or two. Write without thinking. Write with freedom. Write for fun. Put the writing away afterwards and move on each day. 

Six weeks later take out what you wrote. Read it with a critical eye. Begin to redraft and develop. Finally show it to a trusted reader. Redraft again. And again. Keep at it until you have something worth reading. Keep at it until you have something which is polished. Proofread it. Ask someone else to proofread it. 


Then submit it. 


And repeat. 


So I need to stop whining about my work being crap and just get on with it. 

Book launch and anniversaries

Yesterday evening we launched 'Slantways' an anthology of prose poetry written by a group of MA students at the University of Kent. Their tutor, Patricia Debney had been teaching them about prose poetry two and a half years ago when her son was diagnosed with Type 1 Diabetes. Patricia took some time off but the MA group carried on writing and then decided to put together a book to raise some money for JDRF - the Juvenile Diabetes Research Foundation. One year ago just as they were beginning to formulate what they'd do and how to go about it, my son was diagnosed with Type 1 Diabetes. Patricia and I already knew each other as I'd graduated from the same MA course some years earlier. She was also the first person I contacted when R was diagnosed because I knew she'd been in the same place eighteen months before when her son was exactly the same age as mine. Within a couple of months I'd also been asked to contribute to the anthology - I'd already had some prose poetry published and it didn't take long for me to sort out some other pieces to add to it.

Finally last night we had the launch at Waterstones in Canterbury. The plan was to read one poem each and we'd go in alphabetical order - making me first up.

So far so good.....

Except that 22nd March 2010, exactly one year before to the day my son received his diagnosis and instead of me going to a reading of Scarlett Thomas's latest book I was in the William Harvey Hospital on the Children's Ward with him. In the past year R has been in hospital three times - the first on diagnosis, then six months ago he was readmitted because his blood glucose levels were so unstable and then he was transferred to UCLH where he remained for another few nights. He has gone from being a normal boy who plays rugby, enjoys meeting his mates, goes mountain biking, rock climbing and swimming to a boy who has only had about two weeks of school attendance since September and whose life has temporarily taken a back seat to this horrible condition. There have been two big positives in the last year - R was given an Insulin Infusion Pump which means that he no longer has to inject at least five times a day and we found a wonderful website and email list called Children With Diabetes and through that we've all met the most amazing families whom we're proud to call friends.

So, back to the book launch....Patricia said a few words to 'open' the reading and launch and then I was up. I'm used to standing in front of some very unfriendly groups - I've taught Ritalin repressed primary school children right up to hung over undergraduates. An audience of supportive poetry lovers should have been a breeze. I'd planned to explain how I'd come to be invited to contribute, how pleased I was to see everyone there and then finally tell them how the poem I was about to read, 'Beachboys' was written all about my twin sons who were both in the audience.

What actually happened was that I walked up to the front, faced the audience of about forty people, said thank you to them for turning up.....and then completely lost my nerve and almost began to cry. I turned not to 'Beachboys' which I knew would now make me blub like a hormonal teen in front of Justin Bieber, but instead I went to 'The Seahorse' and was about to begin to read before someone pointed out that I hadn't said who I was....
I read 'The Seahorse' despite my voice, my hands and my legs shaking. I didn't cry but I did look terrified, I didn't feel terrified, instead I felt very sad.

Stuff, nonsense and Fern Britton

What a horrible week! Actually, what a horrible month...R broke his arm three weeks ago so his blood glucose levels have been high, high, high. Monday saw R and I off to our local hospital A&E to get it all checked out - further blood tests and examinations. Of course everything came back as normal so it's just the arm that's making him run so high.
Then this morning I set off to work in our car which was only returned from the repair shop yesterday (did I mention I crashed it when exhausted a couple of weeks ago? I was only doing 10mph but had a collision with a cast iron barrier which isn't good for tyres or suspension). One mile down the road the car became very noisy and I discovered a flat tyre. Hooray. I swapped cars - we still have the hire car so I took that to work.
And then two miles down the road there was a hold up - a crash.
I reached work half an hour late. The first seminar of the day was a write off.

I did what any writer ought to do and turned it to my advantage - I headed off to one of the University cafes and had a large mocha. I also got out my notebook and began to worry that I've forgotten how to write. It's been so long since I've simply sat and thought about things other than Diabetes, family stuff or my teaching jobs.

Feeling like I've forgotten how to write makes it feel like a bit of me has gone - lost somewhere in the mess of my life. Now like all good stories I've got to pick up the threads and find my way back to me.

How dramatic!

Next week sees the launch of an anthology of Prose Poetry entitled 'Slantways' three of my poems are included. It's in aid of the Juvenile Diabetes Research Foundation and I'm really pleased and proud to have been a part of all this. But it's also reminding me that I'm no nearer to completing a collection of poetry or finishing the novel.

I need to set myself a series of goals - a timetable. I must finish the second draft of the novel by the end of the summer. I plan to hide myself away in the University library where I'll get some peace and quiet and just write. I know I need to map out each chapter, review what I've got so far, make some decisions about the plot, the story and character arcs, genre....oh, the big plans I had for it. What happens when, where and why. I need to get back into the story. Maybe I need to do a little research, or is that just procrastination? I need something to make it.....zing
What a terrible word - zing.
Okay, so I need to.....
1. Re-read the entire manuscript.
2. Map the manuscript - what happens where, the order of events.
3. Identify plot holes, points of development and so on.
4. Identify themes, motifs - what needs to be drawn out, ditched, tightened up.

And I'm reminded of The One Show the other night; they had Fern Britton on to plug a novel she's written. She explained how as part of her publishing deal an editor came to see her every month and essentially held her hand throughout the writing process. She was given guidance on how to map her story, what to put where and in short, how to write a saleable novel. Of course because she's already a celebrity she has an audience and a guaranteed readership. She's also not stupid so her novel hasn't been ghostwritten but instead just helped along the way.
I was still jealous listening to how much help she received. I am only human after all.


But I bet Fern doesn't break cars like I do.

Taking the plunge

My toes are curled around the springboard, I’m holding my breath and gathering up my courage to dive in….

Some years ago I wrote a novella of about 23,000 words as part of my Master’s Degree. I’d planned to redraft it and send it around to publishers but I never did. It had been written at a particularly difficult time in my life – I was going through a marriage break up as I was writing it. By the time I finished the novella I’d left behind a ten year relationship, my home and my job – all I took was my children, my clothes and my laptop. Once the novella had been submitted and I’d completed my Masters I soon filed it away and began working as a part-time lecturer in the English Department of a local university. At the time I was also writing freelance for a magazine and then doing some fiction editing, the occasional arts review, writing some poetry and generally getting on with life. The novella has continued to sit in the hard drive of various laptops – transferred across to new machines untouched. Every time someone has asked about it I’ve managed to avoid the question by saying it’s too soon to look at it again, and in truth it has been. I’ve been like the thousands of other writers all over the globe who are also not writing a novel…

So I’m taking the plunge now.

I’m going to print out the 73 page manuscript and hand it over to my trusted reader P and see what happens. I haven’t read it myself in four years but I’ll let him read it first and then I’ll begin the real work of writing – cutting, redrafting and making it readable.

Watch this space…..

To sleep: perchance to dream

I'm getting rather used to this nighttime netherworld I've been living in for the past week. In fact tonight I went right round to 3am before I needed to get up - we've organised ourselves into a shift rota and I only get called upon if R goes really low or else it's my turn to check - tonight he hasn't gone *that* low so the 3am check it was! Of course he was a little low then - 3.9mmols, only just a hypo but at 3am you're not going to leave it untreated until 6am when everyone begins to get up. So made him wake and drink some Lucozade then set my timer and waited the prescribed 15 minutes. Retested and he was 4.2mmols - a rise, yes, but not enough for me to think I can go back to bed now. More Lucozade and a Rice Krispies Square just to be on the safe side - normally this would be really over-treating a hypo but right now not much makes a dent in R's hypos. I'm waiting now for the timer to go off again.
I didn't need the alarm at 3am - I woke with five minutes to spare and I'm alert enough now to write this, in fact so far all night I've only hovered around the most shallow of dozes rather than dipping down into the soft folds of deep sleep. I feel very alert now but come 6am I'll feel as if I need to sleep for a hundred years. So far this week the longest I've slept in one go has been about 3 hours, any more would be a decadent and possibly dangerous luxury. I remember reading somewhere that you can survive for a couple of months without food, anything between 2 and 10 days without water and apparently about 10 days without sleep will kill you but after only three or four sleepless nights you'll begin to hallucinate, suffer mood swings and generally be unpleasant to be around.

Just did another test - he's dropped to 3.7mmols - so much for the Lucozade and Rice Krispies Square....He's had a mini can of Coke and I'll test again in 15 minutes. If that doesn't work I'll give him a whole bottle of Lucozade or maybe a honey sandwich made with white bread and no butter. All of this must be rotting his teeth...but it's keeping him alive.

So.....sleep. Who needs it?

Groundhog Day

Well after all the ups and downs of the last few weeks R had his stay in UCLH but by the time he was admitted to both our local hospital and UCLH his constant low blood sugar levels had come back up into a more normal range - typical!

After we finally came home from UCLH R's blood levels began to rise....and rise...and rise. It didn't seem to matter how much extra insulin we gave him, nothing shifted those levels from really high down to a more normal level. Until of course, just like before, he crashed and we've been battling low blood sugar levels (hypos) for the past three days and nights. The day time hypos are just about bearable - R can eat loads of high carb food like jelly beans, lucozade, cola, white bread - all of those are rapid acting - they get into the blood stream very quickly and are ideal for diabetics who are having a hypo. Things like chocolate - which used to be recommended for treating hypos are not the best thing to give because the fat content in the chocolate inhibits the absorption of the sugar and slows up the whole process which you really don't want if you're going lower.

So why was all of this happening to R?

Well he's probably still in the 'honeymoon' period with his diabetes - often after diagnosis when the pancreas has had a chance to recover from the overload a little bit it begins to work again for a short while but it tends to be short-lived and sometimes it can be more trouble than it's worth! That could be causing the hypos - R is injecting insulin and his own pancreas is producing some too - don't ever forget just how dangerous a drug insulin can be - that's why we've been up for the past three nights running trying to feed him with sugar to keep his blood levels out of the dangerous lows. How dangerous? Well... prolonged low blood sugar levels can cause seizures, brain damage and ultimately death. Yep, scary disease this one and there is no cure - insulin injections or an insulin infusion pump are just treatments.
What about those highs? The biggest culprit is growth hormone - he's almost 13 and on the verge of puberty, he hasn't started a growth spurt yet and boys, being boys, tend to grow until well into their late teens or even early twenties. So that means we could be battling highs for the next seven years.

Excuse me while I go and laugh hysterically. Lack of sleep, worry and sheer desperation living in this horrible twilight world of Type 1 adolescent diabetes turns parents grey and slightly unhinged.

The thing that angers me most of all - and I know I've said this before, so apologies - is that nothing we have done has caused this. Type 1 Diabetes is rather like the evil fairy who turns up at the christening and curses you all for no good reason. If I believed in karma I'd have to conclude that in a previous life I must have been one of Genghis Khan's henchmen.

And of course I had to cancel a class I was teaching this afternoon as I sit by the telephone waiting to hear from R's consultant about what to do next. I hate how this has come into our lives. The only upside is that we've met some wonderful people along the way....every cloud.

Having a breather

Events rather ran away with us last week - after those horrible nights of R being low for hours and hours we decided on Friday to see our GP. I'd been up with R from midnight to 6am, P had done the earlier shift until midnight, R hadn't slept at all and his blood hadn't risen above 5 despite all the glucose we'd been getting him to eat. The GP sent us to the local Children's Assessment Unit where we saw our old consultant - we sat with her and discussed the problem of his hypos and how we wanted things to move forward for about two hours. Finally with some brilliant advice from other parents of Children With Diabetes we insisted she contact UCLH - the hospital where R has been referred to for his diabetes care because we weren't satisfied with the care and support we'd received from our local team. The consultant did this but because it was Friday over the weekend there would be no more particular expertise than if we went to our local hospital and were transferred during the follow week. As we were all so tired this was our best option, so since Friday R has been in the local children's ward. I stayed two nights and his father stayed with him for two nights and one way or another he's never been left alone while there - my big fear was that well meaning medical staff who were largely ignorant of current diabetes practise might insist on a treatment that could well cause further problems.
We were lucky though - the nursing staff were brilliant and couldn't do enough for both R and I - even when he had a hypo yesterday afternoon and we had to chase him around the ward and then bribe him with money to take some Glucogel! Likewise, most of the doctors we met, once they'd heard what R has been going through they accepted that specialist knowledge was required and supported us as much as they could - one doctor spent hours over the weekend trying to contact various Endocrinologists up at UCLH so he could get some advice.
Only once, this morning actually, did we come across a doctor whose ideas about managing Type 1 Diabetes in children and adolescents were out of date and restrictive. Her plan - based upon reading his notes, not having talked to him or ever seen him before - was that carbohydrate counting and injecting insulin based upon what R was going to eat was useless for him as he couldn't manage it. Instead he ought to have three fixed doses of insulin each day and a restrictive diet.
Okay....why isn't that any good?
Firstly three fixed doses a day - that's an insulin mix which was the way all Type 1 diabetics were treated in the past. For some people it works extremely well but for most it's far from ideal. It requires a fixed diet - the same amount of carbohydrate each day, snacks at the same day and ideally the same level of activity each day. For many adults this can be ideal - only three injections and their diabetes is managed without it being intrusive to their lives. Unfortunately if you add growth hormone into the mix - which all children produce in large quantities, then put in P.E. lessons a couple of times a week, rugby practise and matches, weekends lazing around playing PS3 games and normal life for children. The fixed diet and fixed activity levels don't sound so good anymore.
Oh, and don't forget, some of those mixes are now so old-fashioned that the pharmaceutical companies are phasing them out in favour of modern treatments.
Secondly - carb counting too hard? No. There are plenty of books out there to help you count how many carbs are in a meal and there's even a brilliant iPhone/iPod app called Carbs and Cals - we use it almost every day. Once you've decided how many carbs are in your meal you work out how many units of insulin you need to inject to cover it depending on what ratio you use for that meal. Okay, I admit it, this bit can be complex....there is a wonderful blog post all about how complex this really is for Type 1 diabetics - do read it and maybe get an idea of how we live our lives now. Yes, it's complex but so is using an iPhone or playing a PS3 game if you've never done it before. Since diagnosis seven months ago, R's mental arithmetic abilities have gone from good to excellent. Just because something is complex it doesn't mean you shouldn't do it.
The third reason for not wanting to use insulin mixes is because we believe that for R's continued and future good health the best way forward is to keep up with new treatments, new technology and what the very best Diabetologists and Endocrinologists are suggesting. So what is it?

Insulin Pump Therapy
So that's another reason for going to UCLH - they're the best, nearest and they're the centre for pumps in the South East.

This morning R was finally discharged from our local hospital, he's home and is now catching up on lost hours of playing Call of Duty on the PS3. Tomorrow we're all off to London - he's being admitted to UCLH for the rest of the week at least and hopefully they can help us to manage diabetes more effectively.
I have mixed feelings about all of this - on the one hand I'm so pleased that finally we'll be seeing doctors who really understand this horrible condition and on the other hand I'm exhausted with fighting both diabetes and ignorance.