Wednesday, 17 October 2018

Please Don't Let Me Be Misunderstood: keeping it simple

I’m just a soul whose intentions are good: so I want to start this post with a heartfelt and sincere disclaimer: this post is NOT having a dig at any group or individual, although I would fully understand if anyone felt that way.

I don’t do tribalism, and I think it is one of the saddest aspects of the contemporary world, not least here in the UK, that we seem to have become increasingly polarised and tribal. I feel very strongly about the political issues with which our country is struggling right now (autumn 2018), but I recognise and understand that others feel equally strongly the other way. And I still feel that in almost any situation, what unites is stronger than what divides, especially if you take the time to sit down, listen and empathise.

Such is the situation with diabetes. There are times when attitudes to diabetes can seem very “tribal”, and in the years in which I have connected with other people with diabetes online, I have seen many instances where there are clear divisions in how people feel about their condition and deal with it. Such divisions are often implicit and overlooked, but on occasions they come to the surface and result in the same sort of hostility and tribalism that afflicts politics, religion, sport, fashion - everything, in fact.

So why the disclaimer and long preamble? Well it’s because this post seeks to speak up for those living with diabetes who choose, or indeed are compelled by circumstances, to manage their condition without any technology beyond insulin pens and a device with which to monitor their blood glucose level. People for whom an insulin pump, let alone one combined with a DIY application to create some sort of artificial pancreas, is either an unreachable dream or simply something they don’t want or need.

I am, with one important exception (more of that later), one such person: I read the admirably enthusiastic and learned tweets and posts about diabetes tech with a paradoxical mixture of fascination and indifference. I am fascinated by what can be done, by what others have achieved through their own enthusiasm and expertise, yet not interested in embracing it for myself. I am on multiple daily insulin injections, always have been, and whilst I would “never say never”, it is hard to envisage a situation in which I would ever be offered, let alone accept, an insulin pump.

My diabetes story is largely one of being “perfectly well, thank you” - to the extent that for the first fifteen years or so of living with diabetes, I largely downplayed it and did little to connect with the world of diabetes beyond my own immediate needs. However, once I started to talk to and meet with others living with diabetes, my eyes were opened to how things could perhaps be different, and it suddenly seemed to me as if everybody else was either on a pump or trying to get one. Having become friends, online and real life, with other Type Ones from all over the UK, Europe and indeed the world, I have at times felt quite the dia-luddite in a group of pumpers, watching in awe as my friends discreetly tweak controls, check numbers and change cannulas. Some of the conversations I see or hear leave my head spinning, and when I recently saw the fabulously comprehensive online dictionary of diabetes technology, I realised just how little of it is of any relevance or even interest to me.

But therein lies the reason for my writing this post: I sometimes feel that the very fact that there is so much to discuss and enthuse about in the world of pumps, CGMs, looping and APS means that those of us who are happy and well with injections just sit quietly in the corner of the dia-room feeling left out, stupid, or both. We even feel perhaps a little guilty that we can’t be bothered (for that is in many ways how I feel) with anything more than a couple of pens, a monitoring device and a basic knowledge of how food and exercise affect insulin requirement.

So what is the exception to which I referred earlier? Well of course, it’s my enthusiasm for something that can tell me more than a snapshot of my blood glucose level, obtained at the cost of some pain and inconvenience. And for me, that is, of course, the FreeStyle Libre flash glucose monitoring system.

I have said this in a previous post, but I well remember at the first real-world meet-up of people with diabetes (#PWDC15) when Lis Warren, a veteran of 50 years’ experience of living with Type One, told a group of us that continuous glucose monitoring had been the biggest single leap forward in managing her condition. She said that CGM was the one thing that she would have been prepared to “mortgage her house” to get her hands on. Now a lot has changed since 2015, most notably with the success of Abbott’s flash monitoring device leading to its admission to the NHS tariff, but I think that there is an important point to be made here, particularly since my own enthusiasm for Libre might seem to be at odds with a post which appears to eschew diabetes technology.

My point is this: there are many who have criticised the Libre and questioned its admission to the NHS tariff, citing inaccuracy compared to “true” CGM, and its lack of alarms (which will to an extent be addressed by the forthcoming Libre 2), but to me, this is precisely the point. FreeStyle Libre is a good fit for my  ”keep it simple” approach to diabetes management. Yes, it is indeed a relatively low-tech piece of tech, with self-evident limitations, and that is why it has been adopted, relatively quickly, by our cash-strapped NHS. I can’t afford a “true” CGM, and neither can the NHS.

So what am I saying? Well I guess it’s me being my usual equivocal self. I want to speak up for those who manage diabetes the “old fashioned” way, using injections, and in the UK at least that is still the vast majority of Type Ones. Let's not forget that, particularly as the online world of #GBDOC might suggest otherwise. However, I also want to stress that even for those of us who embrace a low-tech approach, there is room and need for a little technology in our lives. But not so much that it takes over our lives.  In the end, I’m really not very interested in diabetes.

There, I’ve said it: but please, Don’t Let Me Be Misunderstood. There should be room for technophiles as well as technophobes: pumpers, loopers, prickers, injectors and even flashers (!)  have their place in the world of diabetes management, and those who can afford the cost and time have a right to choose that way for themselves or indeed for their children. But those who prefer to keep it simple have a right not to feel left out or guilty.

We all have our own way of dealing with this complex and demanding condition.

Monday, 1 October 2018

Tous les Visages de l'amour: a tribute to Charles Aznavour

La mort de Charles Aznavour, c'est vraiment la fin d'une époque.  Tristement sous-estimé dans le monde anglophone, ce franco-arménien est pour moi un véritable génie. Quand j'avais seize ans, mon prof de français à essayé de convaincre sa classe qu'Aznavour et ces chansons méritaient notre attention. Nous, on ne le croyait pas. On préférait le rock. Quarante ans plus tard, j'avais changé d'avis, et en tant que prof moi-même, j'ai appris sa musique et ses paroles à mes classes de terminale. Heureusement, mes élèves, surtout les filles, étaient persuadées. J'espère qu'il y a au moins quelques jeunes anglaises en deuil ce soir!

Pour moi, ce qui rend Aznavour spécial, c'est que ses paroles méritent une analyse critique autant que sa musique. Les paroles nous parlent des émotions que nous connaissons tous.

Et en particulier, il nous a parlé de l'amour et du passage du temps, ce que nous comprenons tous:

Un thème prédominant dans la musique, quoi que soit son style, son origine ou son époque, c’est la plus puissante émotion humaine, l’amour. Et la musique d’Aznavour n’est pas une exception, et on pourrait même dire que le thème principal d’Aznavour, c’est l’amour. Pour être plus précis, le titre de sa chanson la mieux connue dans le monde anglophone nous donne un thème plus spécifique: «Tous les Visages de l’Amour». Cette chanson, qui lui a donné son seul grand succès en Grande Bretagne en 1974 sous le titre anglais «She» , a connu un succès secondaire grâce au film anglais «Notting Hill» en 1999, dans lequel une version interprétée par Elvis Costello joue un rôle important. Que ce soit en anglais ou en français, les paroles de cette chanson expriment en termes lucides les joies et les angoisses que l’on trouve dans toutes les relations intimes : « Tu es un ange ou le démon » ;  «Un mot de toi je suis poussière ou je suis Dieu». Mais ce qui est bien clair dans les paroles, c’est que leur auteur croit absolument que ça vaut la peine : «Toi, viens fais de moi ce que tu veux/un homme heureux ou malheureux» sont les mots d’un homme qui comprend très bien que les joies de l’amour sont beaucoup plus fortes que les angoisses.

Dans d’autres chansons, on voit aussi que le compositeur a vraiment vécu ce qu’il nous raconte : il y a des paroles qui nous racontent la passion pure et simple, par exemple «Toi et Moi», mais il y en a d’autres qui racontent des moments plus difficiles, voire douloureuses : «Bon Anniversaire» est une histoire triste, pleine d’humour et surtout pleine de réalisme – il s’agit de l’amour  bien après la passion des premiers rencontres, mais un amour qui survit les problèmes de la vie quotidienne. «La soirée est gâchée mais on a de la chance/puisque nous nous aimons l´amour est le plus fort». Une autre chanson nous raconte une liaison ratée : «Viens pleurer au creux de mon épaule» exprime les mots d’un homme coupable qui ne veut pas que son erreur, aussi grave que ce soit, soit punie. Et dans «Non, je n’ai rien oublié», nous suivons toute une histoire détaillée d’un couple qui se retrouve après on ne sait pas combien de longues années, mais qui ressentent tous les deux la force persistante de cette plus profonde émotion.

Cette dernière chanson a aussi un sens très marqué de la nostalgie exprimé dans son titre, ce qui sert très bien à introduire le deuxième grand thème de la musique d’Aznavour: celui du temps qui passe, même le temps qui s’enfuit. A un certain niveau, il s’agit tout simplement de la nostalgie: Sa chanson peut-être la plus célèbre, certes la plus souvent interprétée par d’autres chanteurs, c’est bien «La Bohême». Une histoire? Une vraie histoire? Peut-être que oui, mais à mon avis il ne s’agit pas d’une lamentation pour une amante perdue, mais plutôt pour un mode de vie perdu, un mode de vie qui en réalité n’existait vraiment pas dans tout son détail, mais qui représente quand même quelque chose de précieux non seulement pour le compositeur, mais aussi pour toute une génération française.  Il regrette le passage du temps et même la perte d’innocence ou peut-être plutôt la perte de la simplicité de la jeunesse quand «nous vivions de l'air du temps», sans soucis pratiques. Ce qui est clair à la fin de cette chanson, c’est que cette vie simple et joyeuse est très éphémère et donc vraiment précieuse.

Une autre chanson nostalgique, c’est bien sûr «Pour faire une Jam» - une chanson en style jazz qui évoque l’ambiance des cafés bohémiens dans la rue de la Huchette au  cœur du Quartier Latin, où le jeune Aznavour a passé son enfance. Celle-ci est une chanson simple et joyeuse mais avec un sens de regret des meilleurs jours d’autrefois. De la même façon, «Mes Emmerdes» est une chanson qui évoque sans regrets et avec une certaine joie les moments d’autrefois.

«Hier Encore», par contre, est une chanson qui exprime plutôt l’agonie de voir le temps s’enfuir, de voir disparaitre sa vie. Elle ressemble dans ses idées au poème «L’Horloge» de  charles Baudelaire, où le poète parle du temps comme un ennemi, un Dieu sinistre qui gagne toujours dans sa bataille permanent contre la vie. «Hier encore» semble exprimer les regrets d’un homme vieillissant qui n’arrive pas à apprécier ce qu’il a réussi dans sa vie, mais qui pense sans cesse à tous ses échecs, tout ce qu’il a raté : «Par ma faute j'ai fait le vide autour de moi et j'ai gâché ma vie et mes jeunes années». On pourrait même dire que ce soit une chanson existentialiste, pour la façon dont elle nous rappelle l’importance des actes dans une vie courte et fragile. Ça, c’est un sentiment fort difficile à comprendre quand on est jeune, mais dans une autre chanson nostalgique qui regrette dans une certaine mesure le passage du temps, on trouve un message nettement plus positif. «Sa Jeunesse» est une chanson qui parle non seulement du passage du temps, mais qui nous conseille de ne pas l’oublier, et donc de saisir tout ce que la vie nous offre en tant que jeunes «Lorsque l'on tient entre ses mains cette richesse/avoir vingt ans, des lendemains pleins de promesses»  - voilà  des mots qui nous rappellent les joies de la jeunesse et l’importance d’en profiter avant que ce soit trop tard - un message plus positif sur le passage du temps, et à mon avis un excellent conseil aux jeunes.

Il existe évidemment une vaste gamme de thèmes traités dans les centaines de chansons de ce chanteur-compositeur extraordinaire: un exemple frappant de la façon dont il ose traiter tous les aspects de la vie humaine, c’était la chanson «Comme ils disent», un traitement sympathique de l’homosexualité, sorti en 1972, bien longtemps avant l’acceptation moderne de l’amour homosexuel.

Mais on peut conclure que les thèmes les plus frappants sont ceux de l’amour et du temps qui passe, et pour moi, ce qu’on ne peut pas nier, c’est que ce sont les deux choses qui nous touchent tous, pratiquement sans exception. Presque tout le monde connaît au cours de sa vie l’amour, que ce soit l’amour réussi ou l’amour raté, souvent tous les deux, et c’est pour cette raison que nous pouvons nous identifier avec les sentiments qu’il exprime, embellis d’une musique si variée et émouvante.

Quant au passage du temps, c’est la seule expérience humaine que nous partageons tous, sans exception. Et donc pour moi, c’est celui-ci qui constitue le plus touchant de ses thèmes. «Car tous les instants/de nos vingt ans/nous sont comptés/et jamais plus/le temps perdu/ne nous fait face/il passe» Voilà des mots qui m’ont vraiment encouragés à profiter au maximum de ma vie.

Voici mon playlist de mes chansons préférées d'Aznavour:

Tuesday, 18 September 2018

Don't Forget to Remember - My mother, Alzheimer's and me.

This post takes me into uncharted territory in order to talk about an area of health much discussed and likely to affect all of us directly or indirectly at some time in our lives: dementia, specifically Alzheimer's disease.

I am writing this having noted that this week sees Alzheimer's Awareness Day on 21st September, two days before what would have been my late mother's 90th birthday. My mother Margaret Long died in 2013 at the age of 84, relatively young by some standards and indeed much younger than either of her parents, who both lived well into their 90s.

My mother, Margaret Long 
(née Cyphus) 
Her death was, however, a merciful release from a slow and agonising decline. She died afflicted by a particularly severe case of the disease, which led firstly to a period of anxiety and fear for her in the months following my father’s death in 2006, and then to a loss of memory which was absolute in an unimaginable way: she had no idea who she was, where she was or who anybody else was. This formerly vibrant, gregarious, talented and loving woman was reduced firstly to a cruel parody of her former self and then to period of mere existence in a world in which she had lost all ability to connect with anything or anyone at any more than a fleeting and superficial level.

I am writing this as a post largely because it helps me to get thoughts written down, but also perhaps to help others who may be dealing with the same situation to feel less alone. I cannot necessarily offer great hope.

Firstly, to put things onto context here is an account of my mother's life, lifted largely from the eulogy which I wrote and delivered for her funeral in March 2013:-

“Margaret was born on September 23rd 1928, the second child of my grandparents Cyril and Rose Cyphus. I knew Cyril and Rose well, and feel I have go to know them even better in recent years as I have researched their ancestry and re-edited her Cyril’s remarkable memoirs. He was descended from generations of Cotswold farm labourers on his father’s side, and from Hugeneot French immigrants on his mother’s side, but by the time Cyril was born, music, and in particular church music, was already firmly established in their lives: his father and grandfather were both organists in picturesque Cotswold country Parish churches, and Cyril went on via an education at New College Choir School in Oxford to a career as a church organist, choirmaster, music teacher and music examiner. Cyril’s youth was scarred by a period of active service in the First World War: he survived the Somme, and returned to the Western Front in 1918 as one of the first tank drivers, one of those who broke through the stalemate and brought that futile conflict to an end.

Margaret’s mother Rose was from a family of middle-class merchants, clergy and musicians: Rose’s father and grandfather were country clergymen, but her mother was the great-granddaughter of the Victorian musician Charles Henry Purday, harpist to Queen Victoria and composer of the hymn tune Sandon, which, with the words of John Henry Newman’s “Lead Kindly Light” provide one of the most beautifully evocative pieces of Victorian musical poetry.

Margaret’s childhood in the London suburb of Lewisham was simple and happy: poor but not desolate, with an older brother Tony, whom she idolised and a younger sister Liz whom she mothered. Like so many families of their generation, their world was shattered by the outbreak of a Second World War: Margaret had just won a scholarship to the prestigious Mary Datchelor Girls School, and the school was evacuated en masse, firstly to Ashford in Kent and then (when someone in Whitehall realised that moving children from London to a place nearer to the front line might have been a bad call) to Llanelli in South Wales.

There can be no denying the lifelong impact that the War had on Margaret, and in her old age it cast an ever darker shadow over her, particularly after she attended a 50 year reunion of evacuees in 1995: she was largely separated from her parents for almost six years, caring for a terrified younger sister and living with the respectable family of an overbearing Welsh civil servant who lost a son in the Battle of Britain while Margaret was with them. Of the many tales from that time, some no doubt embellished and exaggerated over the years, we are pretty sure that it is true that she had to go and fetch the drunken father from the pub, bring him home, sober him up and tell him the news about his son’s death.

And yet she became very attached to the family and in particular to her foster mother Mrs Wilson, who was heartbroken when Margaret had to return to her real family, and she kept in touch with her and attended her wedding.

Perhaps the most remarkable tribute to Margaret’s fortitude is the fact that, as soon as the War was over, she just got on with her life. Mary Datchelor School reconvened and everyone just got on with things, which for Margaret was a scholarship to the Royal Academy of Music, marriage, a family and a career in music teaching.

Of course my brother Chris and I, like all children of our generation, got a little tired of the “during the war” stories, but by and large, we lived all of our childhood and early adult lives with a brilliant mother who had very successfully put the trials and tribulations of her teenage years well and truly to the back of her mind. For that, we, and many others, have cause to be immensely grateful.

She met our father Arthur at the age of 22 when she agreed to deputise for a fellow musician - allegedly a boyfriend, whatever that meant in those days - as organist of Stamford Street Unitarian Chapel on London’s South Bank, where Arthur was embarking on his first ministry. They were in many ways an unlikely couple – proof if it is needed that the best partnerships are those of opposites, and of course they were happily married for over fifty years.

Their move to Bolton in 1953 must have been like moving to a foreign land. Arthur’s choice of a Unitarian Chapel in one of the poorest parts of a smoky Lancashire town landed her, a genteel and cultured Southerner, at the tender age of 24 as the Minister’s wife in a large, draughty manse in the shadow of two huge Lowryesque cotton mills, surrounded by Lancashire folk whose manner of speaking was to her barely intelligible.

Her escape was Bolton School Girls’ Division, under the newly appointed leadership of the legendary Headmistress Margaret Higginson – another bewildered innocent southerner abroad, who became a lifelong friend. She started work there as a part-time piano teacher around my first birthday – scandalising those who thought that the Minister’s wife should be at home looking after her two children.

But Bolton School was an oasis of culture amidst the dark satanic mills, and became her life for over thirty years, firstly as just a piano teacher, but later as a classroom music teacher, and finally and triumphantly as a Director of Music who presided over a golden era when, in a double act with the late Paul Blissett and a supporting cast of many, the school produced musicianship of unprecedented excellence in choral, instrumental and academic scholarship. I know that this excellence is still in evidence to this day.

But like all good teachers, she was about much more than her subject: under Higgy’s bold and innovative leadership – sorry, I can’t think of her as anything but Higgy – the school espoused the sort of holistic philosophy of education which all schools have subsequently bought into, and Margaret was at the heart of it. If she had a spiritual home, I think it was actually not the Music Room, but rather St Mark’s Cautley, that imaginative outdoor pursuits centre bought jointly by the Boys’ and Girls’ Divisions in 1968, and where Margaret, Higgy and others including me spent some of the happiest days of their lives in the midst of the remote Howgill Fells.

Lest this gives the impression that she was just wedded to the job, let me dwell awhile on Margaret as a mother and grandmother. Chris and I were brought up in the happiest of families, guided and cared for by our Yin and Yang parents. We fell asleep at night to the sound of father bashing out sermons on his typewriter upstairs in his study, and mother playing the piano downstairs. She taught us to love and laugh, but also manners and standards – I still find myself using her saying “Don’t take your standards from others” when countering the excuse that “everyone else does it”. Of course we led her a merry dance at times, and I don’t think she ever forgave us for falling under the spell of pop music in the early 60’s thanks to our cool next door neighbours, whose son played in a pub band – the Heebie-Jeebies - and whose teenage daughters babysat us and played Beatles records to us, but in later life I have come to love and appreciate her music as well as “that dreadful Beatles stuff”.

She adored becoming a Grandma at a fairly young age, and delighted in her spritely energy and physical fitness – she wanted to be an active Grandma, unlike her own housebound and often bed-ridden mother, and loved it when Felicity, Nick, Rosie and Natalie were in her care.

This caring and interested nature showed itself outside the family as well: in early retirement, she devoted her energy and intellect to the CAB, and she was a great lover of the theatre and concert hall, enjoying the proximity of Manchester and its cultural life when we moved from Bolton to Prestwich in 1975”.

Quite a life, and a life well lived. For many years, she seemed indestructible, like many of her generation. But then came Alzheimer’s. If you are reading this, worrying about an elderly relative, please forgive if what follows depresses you. There is no glossing over it - it’s horrible.

It started in the later 1990s as she approached the age of 70. It was subtle and imperceptible at first. We all forget things, we all repeat ourselves, and it gets worse as we grow older. She always had a tendency to reminisce and tell lengthy anecdotes and perhaps to elaborate and exaggerate them - don’t we all - but gradually there was a sense that it was more than that. The same stories were repeated, sometimes during the same conversation, and details got changed or exaggerated at each re-telling. Then she started forgetting or overlooking things, sometimes double booking herself for engagements, for example.

At first, it could be explained away: “we all make mistakes”, “we all forget things”, and old age catches all of us out at times, we thought. But eventually, members of the family compared notes and realised that we were all getting concerned. Specifically, I remember her younger sister Liz taking me aside, in summer 2003 at their brother’s funeral, and asking me conspiratorially if we were aware that Margaret kept repeating herself. We were all relieved to share the concerns, and by then my brother and I had raised it with our father, who although nine years older than her, was still in good physical and perfect mental health. He responded with a “thanks but no thanks” approach, acknowledging that there was an issue, but firmly resolved to deal with it himself. He didn’t want to rock the boat and said she would “make his life hell” if he made her go to the doctor about it.

As time moved on, and our father's health declined, it became clear that things were far worse than we were allowed to see. The biggest issue was that not only was she in denial about it, but that she was aggressively defiant of any attempt to make her confront the problem. By the time our father fell ill in 2006, it became clear that she was far more dysfunctional than either he or she had been prepared to admit, and the extent to which he had covered up her memory loss by taking on all household management tasks, cooking, cleaning, laundry etc started to become apparent. When he became frail and ill, she was incapable of doing anything to cope with the situation. By the time that he died, her grasp of reality was so limited that she had to be repeatedly reminded that he had indeed died. She was still physically quite robust, and fiercely independent, so some incidents were almost comical. For example, when we all rolled up at her house on the morning of his funeral, she cheerfully greeted us at the door, dressed in casual clothing with “lovely to see you, thank you so much for coming to see me”, totally unaware of why we were there. Her two daughters-in-law had to gently take her upstairs to choose an appropriate outfit and remind her where she was going that day.

But over the subsequent months, things went into a downward spiral, with her denial of the issues that she faced compounding the difficulties. She kidded herself that she was a strong, independent woman defying the years, but in fact was quickly losing touch with reality. She would phone and tell stories of what she had been doing which turned out to be complete fiction; for example she would invent stories of break-ins at her house, complete with visits by the police, which turned out to be complete fabrications.

Sadly, during this period, she fell victim to real crime: a local youth befriended her and offered to help her with some jobs around the house, charging her for things like changing light bulbs. She gave him her bank card and PIN, asking him to get cash for her from the ATM, and of course he helped himself to significant sums from her account until we rumbled him and he was eventually caught by the police using a security camera. Unfortunately, no crime had been committed, as she had asked him to get the money out and had shared her bank details with him, but it showed her vulnerability.

She still pretended that all was well, even claiming that her former school had been in touch asking her to come back and help out as a supply teacher, or that the CAB had begged her to resume work as an advisor. She said that she still played and practised the piano, but it soon became obvious that she could no longer read music, and in fact played just one piece (Mozart’s Rondo Alla Turca) at breakneck speed and on endless repeat. A tragic end to a life devoted to musicianship of the highest order.

Eventually, after she had been found wandering the streets late at night by the police, and had started inexplicably to empty her rubbish bin into next door’s garden, pick dozens of flowers from gardens along the street, and feed her beloved cat with rich tea biscuits, we had to take action. Her aggressive refusal to acknowledge any problem meant that we had to get her diagnosed through making her believe that appointments were for other medical issues (it is agonising having to deceive and con your mother), and eventually she was admitted to hospital after sustaining a mystery ankle injury when out walking alone. Doctors admitted her for her own safety, and by this time her short term memory was so poor that after two or three days as an in-patient she had forgotten she even had a home. This was in spring 2011, and she never returned home, but was transferred to a care home after a psychological assessment ruled her to be a danger to herself and others.

From then on, the mental decline accelerated, with our own guilt at her being in care offset by the knowledge that she was at least safe. She very soon had no idea who we were when we visited (which my brother and I did, at least weekly and often more), and her grasp of any sort of reality evaporated. She apparently demanded and devoured meat pies, totally unaware of what they were, despite being a lifelong and militant vegetarian. She sang along with a cheesy Tom Jones tribute act who came to entertain residents, despite a lifelong revulsion at popular music. Fleetingly, she appeared happy in her own La-La Land for a few weeks, but she quickly lost the capacity for any sort of human interaction. In the end, she rapidly became a mere shell, existing and not living, doubly incontinent, her brain clearly shutting down one section at a time until, mercifully, it forgot how to keep her heart and lungs going. She died peacefully after falling into some sort of coma folowing a short illness.

It’s a bleak tale, and as I enter my sixties I am haunted by the fear that I could go the same way, or rather that my family and friends would have to watch me go the same way, because the positive as far as we could see was that she herself suffered relatively little in those final months.

Our biggest regret is perhaps that we should have confronted her and our father when they were covering it up in the earliest stages. Could an earlier diagnosis have helped? Who knows?

All I can say in conclusion is make the most of your loved ones while they are still there, not just physically there, but mentally there. If you are concerned about a loved one, seek help. And amongst the many worthy charities who seek our financial support, spare what you can for Alzheimer’s research. We have to believe that we can perhaps one day live out our old age free from the fear of this insidious disease.

All my posts have a song title, so why should this be an exception? Let's call it Don't Forget to Remember.

Monday, 3 September 2018

Do you really want to hurt me? Language matters.

I am a linguist by profession: words and language are (or were) the tools of my trade. I have therefore followed with interest the conversation that has developed over the past year or so regarding the use of language in healthcare.

Fundamentally, as Dr Partha Kar pointed out in this recent post, it’s a simple question of good manners. Whether it’s the #HelloMyNameIs campaign so admirably started by and perpetuated in the name of the late Dr Kate Granger or the NHS #LanguageMatters campaign arising from the thoughtless language sometimes used to talk about diabetes, choosing appropriate words is a matter of common courtesy. Our sophisticated power of speech is what distinguishes us from other animals, and words are wonderful things, but can also be very powerful and hurtful weapons.

However, at the risk of clouding an age-old and simple issue of manners, I do feel that the issue of language has become more difficult in our increasingly connected, hyper-communicative and instantly reactive world. And the problem extends well beyond the world of healthcare. At the risk of seeming like an anti-internet reactionary (which I am anything but), I feel that the written language has become so common a currency that it has perhaps become devalued and under-estimated.

The ease and ubiquity of exchanging words with a far larger audience than was possible just a few years ago means that the words that we so readily use have a far greater reach. We have all become potentially influential writers, with the power to persuade and influence but also to hurt far more people than just those around us.

The English language in particular is wonderful, and in many ways deserves to have come to dominate communication across the world in the way it has done. Our language is uniquely rich and subtle, and has the ability to adapt and change at bewildering speed without losing its power or its charm.

Yet perhaps one aspect that requires more thought and attention is the way in which divisions between the spoken and written forms of language have become blurred: thanks to ICT, we all now communicate far more in writing than in the past, using text, social media and email to communicate in a way which just wasn’t possible in the past. Some moan about sloppy language, grammatical errors, and the use of abbreviations, acronyms and emojis as evidence that standards are falling, yet I see some marvellously expressive use of language in the online world.

However, what we are in danger of losing is the ability to distinguish between appropriate registers of language. In effect, we all now write as if we are speaking, which is great, but overlooks the fact that the written word (as seen on the screen of our phone or tablet) has a potentially hurtful permanence that the spoken word does not. We all say things in the heat of the moment which are hurtful, but we can apologise, explain why we did it, then perhaps say the same thing in a gentler way and in so doing start to put the hurt right. But anything written, for example in a Twitter post, stays there in perpetuity, such that it retains the power to cause harm and upset in a way which may not have been intended. If you need proof of the problem, we now have a US President who appears to think it wise to share his impulsive and at times ill-considered thoughts with the world using Twitter. 

The decline of formal registers of language is in some ways commendable: the Plain English Campaign has done much to ensure that ordinary people can understand complex specialised documents and that rich and powerful people and organisations cannot hide behind unnecessarily opaque language. But there is a place for formal and restrained language which has been carefully crafted, considered and reviewed. The sort that was in the past used in letter-writing, dare I say?

Our written language has, quite understandably, become very "chatty". Which is fine in its own way, as long as we don’t overlook the context or the importance of what we are saying. If there are no boundaries to what we say, no conventions and taboos, we risk causing unintended harm, and using words which are far too strong for the context. In particular, swearing has been massively devalued (as happened years ago with the French language), such that it has completely lost its impact yet has retained the power to cause offence and upset. I am not against the use of swear words, but there is no point in having them if they lose the power to add an element of shock and emphasis to what I say. So on the very rare occasions when I do swear, people know I am really annoyed. And I would never swear in writing unless directly and privately addressing trusted friends. The casual use of previously taboo words in the online world has to some extent undermined the power of those words, yet they are still nasty: people say “WTF” without thinking what they are actually saying, and casually insult those of whom they disapprove using slang words for the genitalia of both genders. There was an amusing lack of irony which I saw in a supposedly supportive response to Partha’s post calling for people to be gentler in their use of use of language by someone saying “It's surprisingly simple to not be a dick”. Talk about fighting fire with fire...

So perhaps some of the keyboard warriors out there should remember that although they may think they are just “talking” online, they are in fact writing, and in so doing can cause more hurt than was intended. And just because the object of our anger is a doctor, a politician, a footballer or a celebrity does not mean that he or she has no feelings.

Language matters, and words can hurt: but “Do you really want to hurt me?

Monday, 13 August 2018

Nice One Cyril

My title could  perhaps be deemed somewhat frivolous, given the nature and content of this "guest" post, but I couldn't resist it. 

Nice One, Cyril was a popular catch phrase in the early 70s used in a bread advert and this hit single, a tribute to Tottenham Hotspur and their classy left back Cyril Knowles. My late grandfather Cyril Cyphus, already by then an old man, was mildly amused to see his anachronistic name briefly the subject of a minor cult in popular culture. 

I have already posted some of my grandfather's writings from the time of the First World War in this blog post back in 2016, and I was reminded last week by commemorations of the centenary of the Battle of Amiens, the beginning of the end of that dreadful war, that he played a key part in those final days of the Great War. 

He was invalided out of the trenches in 1916 as told in that previous post, but enlisted in the newly-formed Tank Corps and was among those specially trained to drive this new weapon. As is widely recognised by military historians, it was the invention and deployment of tanks which hastened the end of the futile stalemate of trench warfare, and so it is a source of pride to me and my family that our grandfather played his part in this piece of history.

Cyril Cyphus in the uniform of the Tank Corps

All the more remarkable - almost ridiculous come to think of it - is that after the War, Cyril never learned to drive nor ever owned a car. This gentle, cultured and mild-mannered man drove a tank through enemy lines in the searing heat of August 2018, but never had the pleasure of motoring!

Here is the key extract from his (unpublished) memoirs "From the Hot Air Balloon to the Man on the Moon" in which he tells the story of his life through the turbulent twenieth century. It tells of what happened in Northern France exactly one hundred years ago at the time of my writing this blog post:

"Twenty battalions of tanks were being trained for a big offensive with the object of bringing the war to a conclusion.

The tanks were of two types (1) heavy tanks (30 to 40 tons when loaded with guns and ammunition) and (2) light whippets, much smaller.

The heavy tanks, which carried six pound guns and/or Hotchkiss machine guns could only travel 3 or 4 miles an hour in favourable conditions while the whippets, carrying machine guns only, could travel up to 12 an hour. The early models of heavy tanks on which we had trained needed four men to crank up the engine whereas the later models, although they still needed the same number of men to start the engine, could, owing to the invention of the epicyclical gear, now be driven by one man without the need for two secondary gears men.  The crew of the heavy tanks consisted of one officer, one NCO and six men and half that number with whippets, but always an officer with each tank and usually an NCO as well (corporal or sergeant).

We had now been in France about four months, giving us time for experience in tank maintenance in comparative comfort and, having moved up nearer the front, on the night of 7th August, 1918, we had been partaking of dinner in the officers’ mess (a bivouac) consisting of several courses made by the cook very cleverly from next to nothing, when our company commander, Major Drader, said, in his customary way; “Gentlemen, you may smoke.”  There was something in the atmosphere that put us in an expectant mood.  It was then that he outlined a plan of campaign that was to take place within a few hours.  Sitting in the bivouac after dinner not far from the front, we had many forebodings, but we knew our strength and were optimistic.  What we did not anticipate was the great resistance that was to be put up by the Germans in the first weeks of the offensive we were about to undertake.

The plan was to creep forward on half-throttle at 4am zero (all watches having been synchronised) while low flying ‘planes would drown the noise of the engines and allow us to reach the starting point for twenty battalions of tanks stretched along the line followed where possible by infantry.  Major Drader said that it was to be the beginning of the end of the war.

There was the preliminary barrage from long range guns passing over our heads and as we moved forward, the low-flying planes moved away. I had to go into action without my corporal, a most reliable NCO.  He had been hit in the arm by a stray bullet on the way up and had to be left behind to the ambulance men following us.  It was pitch dark and very misty and I had to lead the drivers into action by the light of a lighted cigarette walking in front of the tank, a risky thing to do in case of obstacles in the way.  It was so hot inside the tank by the heat of the engine that I left most of my clothes behind at the base and went into action wearing a cotton shirt, cotton shorts and carrying revolver, ammunition and gas mask (a stupid thing to do).  My route had been marked out on the map I was carrying by the reconnaissance officer.  I was to proceed on a route parallel to the Bray-Corbie road but about 500 yards to the left.  I still possessed the map until recently when I destroyed many papers etc for want of space.

The battle raged throughout the night and we suffered some casualties.  I returned the following morning to our company headquarters with my crew intact but exhausted.  I brought back an anti-tank rifle that was soon abandoned because it gave a kick when fired.

In the calm of daylight I went forward with the driver in a lorry to retrieve some of the valuable tools that had been left in the derelict tanks after they had been burnt out.  Before reaching each tank I knew by the large white letters and figures which officer’s body together with those of his men would be found in a charred heap inside the tank.  These were some of the worst moments I have ever experienced.  We also spent the day refuelling our tanks and making preparations for the next offensive.  Because of the casualties we had sustained there was a switch round of tanks and men.  Two of my best men were taken away and in their place at the last moment, two men, who had been cooks and had little or no knowledge of tank training and how to fire a Hotchkiss machine gun.  I had to give them hasty instructions on safety procedures etc and how to act if the feed of the gun became jammed which it often did.  These instructions were not carried out, much to our cost later.  Also because of this I had no time for a final inspection of the tank, and after starting out it was found that a couple of nuts in the gun turret were missing, causing a big gap every time the tank lurched in a certain direction, necessitating the strength of two men to hold it ins position when they should have been holding the guns.

We returned to the company headquarters which was moving forward all the time, for a few hours rest and to satisfy our hunger before setting off again in still beautiful August weather.  Another officer, Davies, a Welsh man, joined me with his tank as we set off ready to fan out later on and wait at the foot of a steep bank for zero hour 5pm (17 hours).  We were then to advance in front of the infantry and at the same time there would be a barrage of artillery fire from behind us.

When we arrived at our starting point we found a battalion of infantry awaiting our arrival.  The colonel in charge sent a man to invite me to speak to him.  What were my orders?  He asked.  I told him that we were to proceed up the hill at 1700 hours precisely.  He said, “If you do, you’ll be blown to pieces, but don’t take your orders from me.”  There was a field gun just over the brow of the hill that would have its sights trained on us, he told me.  I conferred with Lt Davies and we decided to delay our starting for a few minutes by which time we should know whether the colonel was right when he said that zero hour was 1730 and not 1700 hours, if the artillery still remained silent at 1700 hours.  The colonel was right and our orders wrong!  To follow our orders would have sent us to certain death.  At 1730 hours there was a deafening noise as the artillery belched out their shells and, at the same time we moved forward.  The field gun was there as the colonel had said, but it had been forsaken and the gunmen were in full retreat.  By now the infantry relied on tanks to draw the fire and did not like going into action without them, although rifle fire could not penetrate the tanks.  There was a certain amount of lead splash from rifle fire and we were issued with chain masks to counteract it, but they were unpopular and soon discarded as an encumbrance.  We had at last flattened the barbed wire known as the Hindenburg Line, after the famous general of that name, and the advance continued."

A First World War tank of the type driven by Cyril

As always, when I read accounts of what our forefathers went through in the recent past, I am humbled. So yes, at the risk of trivialising true heroism, "Nice One, Cyril"

Monday, 23 July 2018

Looking After Number One?

Readers of my blog will know that all my posts are given song titles. So for this one, I browsed through my Irish songs playlist looking for a suitable title. Amidst some gems ranging from Thin Lizzy to Dana, I was reminded of the exhilarating emergence of the Boomtown Rats in the summer of 1977, adding sophistication to the raw energy of punk which had ruffled so many feathers over the previous year. Long before he became a fêted anti-poverty campaigner, Bob Geldof encapsulated the zeitgeist of that summer with an anthem to self-interest - Looking after Number One. Click on the link and discover it or remind yourself. Great song, but not my values, nor those of Mr Geldof in later years. Let me explain in these reflections on DX Dublin, the fourth meet-up of European diabetes influencers organised and sponsored by Abbott healthcare.

Much of the content of these conferences is only obliquely related to diabetes, but it was during a session on the second day led by two senior figures from Abbott Diabetes Care that I was reminded how much has changed in the four years since I started talking about diabetes online, let alone in the 20+ years that I have lived with the condition.

We were presented with some statistics about the take-up of FreeStyle Libre flash glucose monitoring system around the world which make clear how rapid the spread of this piece of technology has been. A glance at diabetes social media over the past year shows how access to technology remains a dominant issue for those who live with the condition, and the statistics on the spread and growth of access to flash monitoring throughout the world makes clear what a real appetite and need there is for something more sophisticated than just pricking your finger as and when possible and convenient.

FreeStyle Libre has its critics, and like any technology, it’s not perfect and not for everybody. But I well remember at the first real-world meet-up of people with diabetes (#PWDC15 at Nottingham) when Lis Warren, already by then a veteran of 50 years’ experience of living with Type One, told a group of us that continuous glucose monitoring had been the biggest single leap forward in managing her condition. This was shortly after the Libre had been launched, and at the time, a very small group of people in the UK and a few other European countries were using it. 

"Proper” CGM was - and still is - an expensive luxury beyond the means of most ordinary people and certainly beyond the means of any publically funded healthcare system. Libre, however, has quickly proved itself to be a pragmatic compromise: a discreet and reliable way for many to keep tabs on their blood sugar levels without being pestered by alarms, at a cost which is affordable to some self-funders, and more importantly affordable enough to be seriously considered for public funding. Four years on, the dream of non-invasive and continuous monitoring “for the many, not the few” is still far from reality, but a good deal closer.

But the most interesting point made by Jared Watkin, Senior Vice-President of Diabetes Care at Abbott, was that the FreeStyle Libre was the first significant new diabetes tech product launch to have taken place in the full and unforgiving glare of the social media era. As such, the progress of the device, the praise, the reviews, the criticisms, have all taken place largely in the unregulated, unpredictable and uncontrollable world of Facebook, Twitter and Instagram. Previous new devices and therapies were perhaps advertised in specialist publications, marketed to healthcare professionals by sales reps, but with patients largely dependent on others for knowledge and access to advances in their care.

Not for the first time, this makes me feel lucky to be (just) young enough to be part of this phenomenon. Jared and his colleagues reminded us of the massive cultural change that companies such as Abbott have had to adjust to, with their product and the customer support for it subject to constant review and comment in a manner impossible to imagine even a decade ago.

I am very fortunate to be one of those members of the patient community who are asked by companies like Abbott to play a (very small) part in this process. There are voices in the online community who criticise those of us who are “affiliated” to the healthcare industry, and it is easy to make cheap accusations that we are the undeserving recipients of benefits and sweeteners from an industry only too keen to cultivate a group who will sing their praises online.

In truth, those who take part in events such as the DX series organised by Abbott are in my experience interested in only one thing, and that is to attempt to represent the diabetes patient voice in their own countries. And to allow such people the chance to meet together and compare and contrast experiences is of huge value not so much to them as individuals, but to the communities of which they are a part. 

My favourite moment at DXDublin was during a session on patient advocacy when I found myself in a small group discussion with Dimitris from Greece, Weronika from Poland, Bianca from Brazil and Melanie from Wales. How else could we five have ever found ourselves around the same table discussing living with diabetes in our very differing circumstances? The value to the communities in which we live is difficult to prove, impossible to quantify, but very real in my opinion.

An Englishman, a Greek, a Pole, a Brazilian and a Welshwoman
Yes, we had lots of fun and laughter over the weekend, yes I loved spending time with some who are already good friends and others whom I was meeting for the first time, but the engagement and commitment shown by all to diabetes advocacy in their home countries is truly awe-inspiring. 

Expert patients from across Europe

The weekend’s programme included valuable sessions from experts in communications and advocacy - for me the most memorable being the hugely impressive Tiernan Brady, one of the most prominent LGBTI rights and equality campaigners in the world. His humble and good humoured but powerful session on how he helped secure the epoch-making votes in favour of gay marriage in Ireland and Australia was truly inspirational for me and many others in the room, and taught us much about the art of persuading and representing in our hyper-connected world.

#DXDublin was a wonderful experience, an opportunity for which I am truly grateful, and I wish to thank all those who worked so hard to put together and deliver the programme, and also those who took part. It is very hard to resist the oft-stated conclusion, surrounded as I was by people with Type One from all over Europe and beyond, all of them significantly younger than me, that people with diabetes are almost invariably outward-looking, generous-minded and sensitive individuals.

Diabuddies from across Europe and beyond

So why the title? Let's say that far from Looking after Number One, DX helps us to make a better job of Looking after Type One, not just for ourselves, but also for others.

Disclaimer: I was invited to DX Dublin by Abbott Healthcare, who paid for all travel, accommodation and subsistence expenses for me and other delegates. Opinions on the FreeStyle Libre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.

Tuesday, 3 July 2018

Ride My SeeSaw

There's no shortage of metaphors to describe life with Type One diabetes, so no shortage of song titles for my diabetes-related posts. It's all about balance, so let's say this one is all about trying to Ride my Seesaw, and the Moody Blues had a song for that. Click on the above title, for one of those "so uncool it's cool" videos.

I sometimes think it has all been said already about Flash Glucose monitoring, but I hope that this post might just help those working in CCGs around the UK in their deliberations on whether to approve access to FreeStyleLibre sensors on the NHS for people living with Type One Diabetes.

In personal terms, I live in an area where a policy is “under review” and I am cautiously more optimistic of a positive outcome having had the opportunity to put the case to the CCG at a public meeting a few weeks ago.

But in less selfish terms, I was dismayed last week when a good friend of mine from the diabetes community (living in West London) told me that she had been informed by her GP that she would no longer be prescribed FreeStyleLibre sensors, because they are “too expensive”. The woman concerned is herself a Type One who cares for her 5 year old daughter who is also Type One, and she had initially been prescribed sensors for herself and her daughter.

In other areas of the UK, she and her daughter would both be eligible for sensors on the NHS and would be benefiting from more frequent, non-invasive testing, more detailed information about the direction of travel of blood sugar levels and graphical data enabling her better to manage her and her child's sugar levels, thereby reducing the risk of serious and costly complications in the future. And equally importantly in my view, doing so with less mental and emotional strain. All at a cost to the NHS which is very modest compared to that used for many commonly prescribed drugs and treatments for other medical conditions.

So why does this matter? Are we being treated unfairly or are we, as a BBC journalist who interviewed me recently put it “just after the latest gizmo”?

Well, I have been a self-funding FreeStyleLibre user for over three years, and this past week, a little bit of Libre-assisted self-management on my part brought the issue into focus for me, making me realise how hugely beneficial even this relatively unsophisticated piece of kit can be.  It enables us to keep blood sugar levels close to the desirable range and more importantly to prevent longer term average levels from creeping upwards, causing the sort of insidious damage which can and does lead to serious complications.

Let me explain: I had a very busy two months in May and June, returning to my former place of work for a stint as an exam invigilator along with a number of one-off events including a five day visit to France leading a twin town delegation (driving there and back) and a two day filming assignment in London for a forthcoming appearance on BBC TV's “Pointless”. During this time, I must confess that my diabetes management reverted somewhat to the strategy that I used throughout most of the first sixteen years of living with the condition: I allowed my BG levels to err on the high side, aware that this would minimise the risk of inconvenient, embarrassing or even dangerous hypos.

This is a perfectly reasonable strategy given that I was appearing in a primetime TV quiz show, driving a 1000 mile round trip and invigilating public examinations at various times, but it is frightening how quickly a bit of neglect of tight control pushes averages up. Without FreestyleLibre and its detailed feedback, the upwards creep of averages would probably have gone unnoticed until an HbA1c result at a clinic review. And of course subtle damage is already under way whenever blood sugars are out of range for any length of time.

But for those like me who can use it wisely without becoming over-obsessed with every twist and turn of blood sugar, the FreestyleLibre is an invaluable source of information, a sort of Dia-Jiminy Cricket who can act as a conscience if things are going astray. A week or so ago, I looked at my average BG and noted that it had crept up to 8.9, having typically been around 7 since I started on FreeStyle Libre 3 years ago.

So last week, which was significantly less busy than the previous few, I resolved to improve things. I decided just to keep a closer eye on my blood glucose, to check levels a little more frequently and to react to them with correction bolus doses or snacks. Nothing clever, no elaborate calculations: just a common-sense response to some easily interpreted data presented on my phone screen.

And guess what, in just one week, things got better. Look at these screen shots, firstly this one showing the 90 day average, with the tell-tale orange bars reflecting those higher-than-desirable levels of recent busy weeks:

And secondly this one showing the results of my week of more intensive checking and reacting, with the green bars showing a significant improvement and the average at 6.7, down from 8.4:

Could this have been achieved with conventional finger prick testing? Theoretically yes, but in practice no. The ease of frequent testing, the instantly available average data, the trend arrow to enable safe and effective reactions to impending highs and lows are just not possible without a FreestyleLibre.  And yes, the inner child who is never far from the surface in this 60-year-old me, rather enjoys the reward of seeing those green bars, like getting merit stickers from a teacher. I'm easily pleased and amused.

But perhaps most significantly, it’s the fact that it helps me to self-manage my short and long-term well-being. And if it’s cost that is causing some CCGs to either refuse to prescribe, or to impose ridiculously narrow criteria, then they should perhaps consider that helping and encouraging people with Type One diabetes to self-manage their condition with the help of a relatively cheap piece of technology is a very sound cost-saving investment.

Please Don't Let Me Be Misunderstood: keeping it simple

I’m just a soul whose intentions are good : so I want to start this post with a heartfelt and sincere disclaimer: this post is NOT having...