Posted in Family, Type 1 diabetes

Tour of Hope at Southmead Hospital

Group photo of JDRF team, Laura and Dr Gillespie
From left: Lee and Danielle of JDRF, Laura with her JDRF mascot bears Ruby and Rufus, and Dr Kathleen Gillespie

Just before the summer holidays, my daughter Laura and I were lucky enough to be invited to tour some of the research laboratories of Southmead Hospital. The purpose of the tour was to see at first hand some of the work being co-funded by the JDRF to search for a cure for Type 1 diabetes. Regular readers of this blog will know that Laura was diagnosed with Type 1 diabetes at the age of three, a few years after Gordon, my husband received his own diagnosis of the same disease.

JDRF logo and URLJDRF funds a lot of research projects all around the world, and by chance some of these happen to be based in the hospital that helps us manage Laura’s diabetes. It’s also the hospital in which she was born. So there were lots of good reasons to go along for a look behind the scenes, even though the tour happened to fall the day before we were about to depart to Greece on holiday. I’m very glad I made the slightly reckless decision to abandon our packing and go for it!

What We Saw on our Tour

Photo of Dr Gillespie syringing liquid
Dr Gillespie demonstrates DNA extraction – from a kiwi fruit!

Accompanied by our regional JDRF team, the lovely Lee Newman and Danielle Angelli, we were shown round the labs by Dr Kathleen Gillespie, a researcher in molecular medicine with special interest in the genetic mechanisms underlying immunity. Apparently 50% of the occurrences of T1D are thought to be genetic-related – although it’s by no means straightforward, as there are incidences of identical twins, one of whom develops the disease and the other doesn’t.

Photo of technician with full tray of samples
“And here are some I prepared earlier”

Dr Gillespie introduced us to her cheerful and welcoming team of staff who have dedicated their careers to amazing projects investigating the prediction and prevention of the development of Type 1 diabetes. We toured a series of small laboratories, each with a special set of expensive machinery – but the machinery would be worthless without the intelligence and imagination of the extraordinary staff who operate it. Their kit included some less costly items that you’d find in any kitchen, such as fridges and microwaves. When Dr Gillespie showed us how to extract DNA, she did so on a kiwi fruit!

“Our work does look a lot like cookery sometimes,” said Dr Gillespie. “People who are good at cooking are usually good at lab work too!”

How the Work is Funded

Every research project that goes into the jigsaw of the search for a cure has to be funded separately, in blocks, with submissions made to fundholders in order for the work to continue. The tour made us all aware of the importance of raising funds for the JDRF long-term, so that their work can continue.

We all came away motivated to work harder to raise funds and awareness for JDRF. We were also inspired by the imagination, creativity, positive attitude and dedication of Dr Gillespie, her team, and their equivalents around the world, for helping bring the cure for diabetes ever closer.

Photo of Laura looking at contents of test-tube in lab
“So that’s what DNA looks like!”

My Book Launch in aid of JDRF

Cover of my new book, "Coming To Terms with Type 1 Diabetes"
Cover design by SilverWood Books

This November, to mark World Diabetes Day, I’ll be launching the paperback edition of my book Coming To Terms With Type 1 Diabetes, to make more widely available the ebook that I published for WDD last year. A new chapter will be included entitled “Diabetes Is Always With Us”. If you’re within reach of Bristol and would like to come to the event launch at Foyles Bookshop, Cabot Circus, on Thursday 13th November, the eve of World Diabetes Day, please send me a message to reserve you a place at the event. I’ll also send you more details of the launch.

For more information about the JDRF, please visit their website: www.jdrf.org.uk.

For more information about Coming To Terms With Type 1 Diabetes, see this page on my website here: Coming To Terms With Type 1 Diabetes

Posted in Family, Personal life

The Wisdom of Estate Agents

(This post was originally written for the September edition of Hawkesbury Parish News, my local community’s newsletter)

Photo of Laura in purple frock and tiara
My daughter Laura as Carnival Queen’s attendant at this year’s Village Show

Twenty-three years ago, when I was negotiating to buy my house in Hawkesbury Upton, there were four significant facts that I’m glad I didn’t know at the time, because they’d have made the process much more stressful. But with hindsight it seems remiss of the estate agent not to have told me:

  • there is an excellent village primary school
  • the village is in the catchment area for an equally good secondary school, with admission pretty much guaranteed for anyone who lives here
  • the extraordinary annual village show – the undisputed highlight of the village year – would make me proud to call Hawkesbury Upton my home
  • climate change and the subsequent increased rainfall would make me very glad indeed to have a house on high ground
Photo of Laura in her new school uniform
Laura ready for her first day at secondary school (still inadvertently wearing the purple sparkly nail polish from the Show)

All four of these factors have given me cause for celebration this year, when my daughter left the primary school with a glowing report, gained a place at KLB, and was picked as Carnival Queen’s Attendant for the Show – and on numerous occasions throughout the year we’ve watched copious rainwater flowing away from our house, downhill, down the middle of our road.

But as September begins, I’m mindful of two more facts omitted from the estate agent’s blurb that I was left to learn from my new neighbours:

  • the day of the village show is the last day of summer
  • when it’s jacket weather in Chipping Sodbury, it’s overcoat weather in Hawkesbury Upton

Perhaps that estate agent was smarter than I gave him credit for. Now where did I leave my overcoat?

 

Posted in Family, Personal life

It’s Show Time! (Hawkesbury Horticultural Show, that is…)

This post was written for this month’s edition of the Hawkesbury Parish News, in anticipation of the Village Show at the end of this month. Looking back at the photos of our float last year, I am wishing hard that we’ll have such blue skies for this year’s show!

Photo of Pandamonium float with children dressed as pandas
Our float for last year’s Show (I was the Chinese Ambassador, Gordon was the Scottish zookeeper)

Close up of panda reading "Panda Baby Names" bookI hadn’t lived in Hawkesbury Upton very long before I realised the importance of the annual Horticultural Show in the village calendar. Since I moved here in 1991, I haven’t missed a single Show, and I always arrange my summer holidays to make sure I’m back in time to prepare for it.

I’ve put plenty of entries into the Show over the years and won a handful of prizes in categories as diverse as crochet, hen’s eggs, jam, wine and – my favourite prize of all – the oddly-shaped vegetable (sadly no longer in the schedule).

I’ve been on many floats, from Youth Club’s Global Warming in the 1990s (Arctic scene at one end, tropical island at the other) and St Trinian’s, to more recently The Lion, The Witch and The Wardrobe with After-School Club, and Edinburgh Zoo’s Giant Pandas with my daughter and her friends last year.

Close up of children in Pandamonium float

It’s always exciting to win a prize, even third in a category in which there are only two other entries, but you don’t need to win prizes to enjoy the Village Show. The most satisfaction comes simply from feeling like you’re part of a huge, traditional act of community.

It’s also rewarding to serve on the Committee, which I did for 13 years. I’ll never forget seeing at one meeting an elderly judge demonstrate his set of brass shallot-measuring rings, as used by his father before him. The Hawkesbury Show is living history.

But the most unexpected buzz relating to the show struck me only recently, when, at my daughter’s 11th birthday party, I was chatting to her friends’ mums in our garden. One of them, relatively new to the village, was taking photos of the children’s antics.

“You ought to enter that into the Village Show,” I remarked, admiring a particularly good one.

“Spoken like a true Hawkesbury villager!” said another mum, whose family has been in Hawkesbury for generations.

23 years after moving here, I’ve finally arrived.

Happy Show Day, everyone!

The 2014 Show will take place on Saturday 30th August. For more information, visit its website: www.hawkesburyshow.org.

Pandomonium float seen from other side showing sign saying "all the way from Edinburgh"

 

Posted in Family

The Scent of a Grandma

Picking up on the thread from my Mother’s Day post, The Scent of a Mummy, I’m reporting here on a memorable meeting with my late Grandma’s cousin Nina.

Nina and Laura together
It seems Nina (98) and Laura (11) share the same smile genes

It was with some trepidation that I offered to take my Auntie Thelma (my father’s younger sister) on a round-trip to Minehead, on the Somerset coast, to visit her mother’s (my grandmother’s) cousin Nina.

Outings with Auntie Thelma are always good fun. She’s good company, generous, funny and liberal-minded, and from since I was very young, she’s been more influential on me than perhaps she realises. She’s introduced me to different arts and crafts concepts, taken me to terrific museums and galleries, and helped shape my aesthetic tastes. She’s also inspired me with her endless creativity and application to the arts and crafts that she enjoys producing herself – much like my dad. (There’s a post here celebrating my father’s many talents.)

Next Best Thing to Visiting Grandma

Old photo of Nina aged 20
Nina at the age of 20

So it wasn’t Auntie Thelma’s company that made me nervous, but the prospect of meeting for the first time a lady who was my Grandma”s cousin. Grandma died when I was 12. We were very close, and I still often dream at night of going to her house to tea, and wake up disappointed to realise I can no longer do that in real life. Grandma was born in 1900 (a very neat achievement, I’ve always thought), so would have been 114 if she were alive today. Nina, by contrast, at just 98, is a spring chicken. She is however the oldest person I have ever met. Born in 1916, meeting her was a useful opportunity for my daughter Laura, who is studying the First World War at school this term. We took a special photograph of the two of them together for Laura to take into school the next day for show-and-tell. Her classmates were impressed.

Nor was I anxious about being in the company of a very old person. I love old people, and for years was good friends with my next-door neighbours in Hawkesbury Upton, James and Hester Harford, who when they died in 2000 wer aged 96 and 90 respectively.

Why So Nervous?

old photo of my Grandma
My Grandma

So why the big build-up? It was because the only photograph that I’d seen of Nina made her look very much like my Grandma. I thought it might be emotionally overwhelming to meet someone who was Grandma’s spitting image, not least because it would fill me with remorse for having never made the effort to meet Nina before.

As it turned out, Nina didn’t remind me of Grandma visually (although comparing her photo with Grandma’s I still see a resemblance). But she shared my Grandma’s quick wit, dry humour and candour, and I really enjoyed her company. Although she is less mobile than she’d like to be, using a tea-trolley in lieu of a zimmer frame to get around the house, she is absolutely on the ball, and her conversation is wide-ranging, evocative of past times but anchored in the present, seasoned by the self-knowledge of a very old lady looking back.

A Lovely Afternoon

Selfie of Grandma's cousin Nina, my aunt, my sister, my daughter and me
The four-generation selfie

We enjoyed lunch together, and after a couple of hours took our leave, wary of wearing her out, but not before we’d taken plenty of photographs, both of her old family portraits – there’s a stunning picture of her when she was 20 – and of ourselves as a group: Auntie Thelma, my sister Mandy, my daughter Laura and me. There can’t be many 98 year olds who enjoy being part of a selfie.

But the visit was not without its emotional trauma. Having parked outside her apartment block (an elegant building with a view of the sea), as we stood waiting for her to answer the door, I was overwhelmed with a strong perfume that suddenly descended upon me like a cloud for no apparent reason. It was an overpowering floral scent. One moment it was not there; the next it engulfed me.

A Fragrant Mystery

I couldn’t quite identify the fragrance. It was neither honeysuckle, nor freesias (my Grandma’s favourite scent), but it was equally heady, yet I didn’t spot any immediate cause of it in the plain, paved yard in which we were standing.

More formal photo of Nina, Thelma, Mandy and Laura
Four generations, total age nearly two and a half centuries

Then Nina opened the door, we went in, and in the flurry of greetings, I neglected to mention the perfume to anyone else, to see if they’d noticed it too. (I did however doubt my sanity for a moment, because a former boss of mine, the editor of a magazine I worked on decades ago, told me with the benefit of his previous career as a psychiatric nurse that olfactory hallucinations, to use his technical term, was a sign of madness.)

It was only days later, having opened a purchase that I’d made on the bric-a-brac stall at a village fete on Saturday, that I realised which flower it was. What I’d bought was a richly-scented Penhaligon candle, still in its box. Its perfume, exuding so powerfully from the packaging that you could almost see it, was Lily-of-the-Valley.

And then the connection hit me: that this was the fragrance that engulfed me as I stood on Nina’s doorstep. And what you need to know to realise why this connection was so extraordinary is this: my beloved Grandma’s first name. It was – of course – Lily.

Posted in Family, Type 1 diabetes

The Seven Year Itch & Type 1 Diabetes

(A post written to mark the seventh anniversary of my daughter’s diagnosis with Type 1 Diabetes)

Debbie and Laura at TIm's house
Laura doesn’t remember being without Type 1 Diabetes

Getting ready to celebrate my daughter Laura’s 11th birthday in 13 days’ time, I can’t help remembering that seven years ago on this day, I was hoping that we’d be out of hospital in time to celebrate her fourth birthday party.

What were we doing in hospital? We’d been urgently despatched by our lovely family doctor, Dr Mather. She’d alerted A&E (aka the Emergency Room) at Bristol Children’s Hospital to expect our arrival.

It was imperative that we were seen straight away to reduce the chance of Laura becoming dangerously ill.

“Are you in a fit state to drive?” Dr Mather asked. “If not, I’ll call an ambulance to blue-light you there.”

With adrenalin surging from the shock of the diagnosis, we were almost in a fit state to fly there, Superman-style, to save our baby.

All Change with Type 1 Diabetes

That was the start of a whole new way of life for us, accommodating the daily need to do things that fly in the face of maternal instinct:

  • to stick needles in in my child to deliver life-preserving insulin
  • to prick her fingers, lots of times, every day, to draw blood to test it was neither dangerously high or low

It’s a balancing act, always, 24/7, 365 days of the year. Until a cure is found, there’s never a day off, because if we stopped doing those things, she’d be dead within days. Managing Type 1 diabetes is not for the faint-hearted. But being faint-hearted is not an option.

Lucky Seven?

Laura and Debbie Young on a hill
With Laura, aged 7

Seven years feels like it should be a magic number. It’s a special anniversary when people are meant to become suddenly desirous for change or take off in new directions in search of freedom.

There’s no magic here today, except the evidence, as every day, of the wonders of modern medicine and the compassion of our NHS (National Health Service) that supplies us with the resources we need to keep Laura alive.

Another Sea Change

Laura and friend at JDRF Youth Ambassador Event
Laura hugs a JDRF mascot for luck

When Laura was diagnosed, we were just getting ready for her to move up from playgroup to school. That’s enough change to challenge any family without the complication of serious illness, but hey, when it’s your kid, you deal with it.

Now she’s poised to move up to secondary school. Next week, as her final fling at the village school, she’ll be doing her SATS exams – the tests that the government imposes on every child in Britain at this stage. The school has been preparing the children for SATS since January, and the stress of SATS is bad enough for children (and parents!) who don’t have special health care needs.

But for Laura, she’ll have the added challenge of taking exams while trying to keep her blood sugar level. Stress can have two effects on a diabetic – it can send them very high or very low. Either state is not ideal for sitting exams – it can make you feel faint, drunk, angry, scared, tearful. Or it might have no effect at all. Trouble is, you don’t know how it will affect you till you’re there.

The supposed treat of a class breakfast in school at the start of each examination day adds further complexity. Moving away from her normal breakfast routine adds risk: if we miscalculate her insulin dose to deal with whatever she chooses there for breakfast, it could scupper her blood sugar for during the exam. But we don’t want to stop her from going to the breakfast, because it’s important for her emotional and psychological well-being not to feel different from her classmates – another potential source of distress.

Laid-Back Laura

Laura head and shoulders
Calm as ever

Fortunately Laura is the most laid-back person I know.

“I’m not worried about SATS,” she assured me yesterday. “I think doing tests is quite fun.”

She’ll be fine, I’m sure. She’s bright, she’s thorough, she has a strong  work ethic. She’s not spending the weekend worrying about her SATS – she’s completely absorbed in setting up a Eurovision Song Contest final for her cuddly toys.

Yes, she’s doing fine. But I still wish we could ditch the diabetes, seven years on.

Cover of my new book, "Coming To Terms with Type 1 Diabetes"
Click cover for more info

In November, I’ll be launching a paperback of the ebook I published last World Diabetes Day, to raise funds to search for a cure. All proceeds are going to JDRF, the leading charitable funder of Type 1 diabetes research. If you’d like to read the e-book in the meantime, it’s available exclusively via Amazon on Kindle for now, wherever you are in the world. (More info here.) If you’d like to be alerted via email when the paperback is available, please sign up for my mailing list here.