What Did You Do In The War, Dad: guest blog from father about his father, the creator of James Bond & ratskin purses….

What Did You Do In The War, Dad?

What Did You Do In The War, Dad?

Dad’s guested a couple of blog posts, based on his own oral history. The latest sees a journey into our family’s past, secrets of the British Intelligence service, and a lot of speculation and mystery prompted by the question he used as the title for today’s blog:

What did you do in the war Dad?

I was wondering what to talk about when the advent of V.E. day set off a train of thought, and today we are going o what might be called a magical mystery tour.

Today I am going to tell you a story. It’s about the mystery behind the question “what did you do in the war Dad?”

A question that most kids of my generation asked. Most of them got an answer but nearly seventy years on I am very little the wiser.

And behind the mystery of what Dad did an even greater and more important story emerged that involved the whole of the U.K.

Dad went away in 1944 and returned to my life somewhere around 1954, quite a long period in a little lad’s life.

So I asked the question and the only answer I got was “I can’t tell you, “It’s a secret.”

Over the years I asked the same question, and I always got the same answer “it’s a secret”

What on earth had he been up to that he couldn’t talk about 60 odd years after the event?

At this point, a brief history of the facts that I know about his early life.

He was born James Herman Lucas in 1905 in the area of Berlin known as Charlottenburg, the son of an English father and a German mother.

At the outbreak of World War 1 his father was interned in a prison camp called Ruhleben on the outskirts of Berlin for the duration of the war.

This prison camp was developed and later became the infamous Spandau Prison.

In fact Grandfather Lucas found fame in his own right as it is reported in The Times of Feb. 11th 1919 that at the Ruhleben Exhibition he presented a rat skin purse to the Queen.

By coincidence just yesterday I had confirmation from the Imperial War Museum that the rat skin purse in their possession is in fact the purse that Grandfather Lucas presented to Queen Mary.

Queen Mary then gifted the purse to The Imperial War Museum.

So although distant I do have Royal connections.

It is suspected that Father was sent to England for the duration of the war but no proof of this has been found.

So you can see that problems of establishing his history are already present, but it becomes even more interesting as we follow James Herman.

So about ten years ago I started to try and unravel this bit of history,

I remembered us coming from Cardiff, where the docks were constantly being bombed, to my Grandfather’s farm in Attleborough Nuneaton, where we were victims of the blitz on the night of arrival.

Father’s timing was always impeccable!

Now memory becomes slightly hazy, for some reason, we were in London amongst the air raids and the V1 and V2 rockets, burning buildings, air raid sirens, searchlights and barrage balloons. During this period Father disappeared.  He didn’t come back into my life for a long time.

When he did I asked that same question, which was closely followed by the same answer.

After Mother died I was clearing out the house when I came across a bunch of letters that had been sent home to her from the various places he had been posted to, they only covered one year of adventures in Africa, Italy and Germany but they only deepened the mystery, although facts emerged that I was unaware of.

They did solve the puzzle as to why we ended up in London. He apparently worked for the BBC, possibly as a translator or in ‘black propaganda’.

Remember German was his first language.

Presumably he was recruited from the BBC because the letters tell us he was flown to Algiers and billeted in the best hotel with American intelligence officers.

The postmark on the letters show us he was assigned to G11 which is Anglo/American intelligence.

Apparently he lived the life of Reilly there, – an American mess, with very cheap and generous allowances of alcohol and tobacco, staff car etc.

It is recorded that he “mislaid” the staff car and had to “keep a low profile” for a while, But I doubt that this incident was serious enough to demand 60 + years of secrecy.

In fact he seems to have had the run of Algiers, visiting dance halls and night clubs and other things that I am sure Mother would not have approved of.

He also alleged that he met Ian Fleming, of James Bond fame, but was unable to recall anything about him other than his feet smelt!

Later on his letter headings changed to Polindep Unit BNAF. This was discovered to mean 2Political Intelligence Department”, which was in turn just a cover name for the “Political Warfare Executive”.  Most people don’t know anything about PWE, so I was interested to know what they did.  PWE used to be the Propaganda wing of the Special Operations Executive (SOE).  After 1941, the SOE branched into two – one half became the now famous SAS, the other half became the largely unheard of PWE.

Of course these letters were censored and gave no indication of what he contributed to the war effort.

In these letters were a number of references to a place “that I cannot tell you about” and letters that were posted in England that had been posted by a friend that had been visiting this place.

The only place we could trace that fitted this description was the top secret Bletchley Park

This place was so secret that it was not that it was not discovered until the 1980s.

So secret that, although 1000 people worked a three shift 24 hour system, the secret never leaked out.

So secret that staff in adjoining huts were not allowed to discuss things with one another and had to “post” documents from one hut to another, no personal contact could be made.

So no apparent leads there.

Then son Paul came to the rescue. He used to teach students for The Open University and he emailed “I taught a guy that worked at Bletchley I’ll talk to him”

Great excitement when this fellow replied and said “Yes I can help, I know various fellow members of the staff that were there at the time.”

Sadly there was no record of Father’s existence at Bletchley Park, so at the end I was none the wiser.

So, back to the letters sent from Algiers. I transcribed 103 of these, written 70 years ago in ink on airmail paper, but of course, Father was educated in Germany so his handwriting was in the German style script and his phrasing was Germanic, Father never did make things easy!

In these letters he said that he had been awarded the assimilated rank of Major with a salary in excess of £400 per year and if anybody came enquiring for him he was “an officer of Government travelling for the Crown”

Anyway, with this information and the mention of an army pay book I thought  ‘aha, MOD!’,

so wrote giving all the relevant details and enclosed my cheque and sat back ready for the information.

Weeks later,  I had the letter saying they could not trace this person. Twice more over the next couple of years I tried, the last time the reply and my cheque arrived by return of post. Was something flagged up?

What on earth was my old man up to? I had the written evidence.

In his letters home in between tales of his high life with the Americans there were traces of homesickness but always the end was the same “I could not make the same money, and I may be liable for conscription.” What could that mean? Surely at 40 years of age he would either be too old or already in the services, we know he had a rank and a pay book.

Where was the next avenue of investigation?

His letters follow his transfer to Italy and to a City that I cannot name but I can see the dome of the Pope’s church from the window of my apartment.

How on earth did he get that past the Censor?

From this point on his letters become more and more vague and as they were typed there were thoughts that they were not written by him.

So there ends the letters to home, no real information except that together with the American he seems to have had a very comfortable and enjoyable war so far.

The next positive trace of him was in Germany as a member of the Control Commission.

‘Ah,  the Home Office must have a record of him, at last we have the chance to solve the mystery.’

After a considerable time the Home Office answered my request made under the Freedom of Information Act, and to be fair they appear to have done a lot of research but the answer was identical  – “we can trace no information on this person, even using all combinations of the names”.

So nothing, nix.

Unbelievable considering I have photos of him in uniform in the city of Hamburg.

I also have photos of the villa and officer’s mess where he was billeted in Hamburg, in fact the villa is still standing, and very posh it is too.

It is strange that I have documentary proof of all these things yet they are all denied by the authorities.

Who is telling porkies,  and what the hell did you do in the war Dad?

During research into G11 intelligence I discovered that they were involved in something called the ‘Alsos Project’.

This was involved with getting German scientists out of Germany and transporting them to America to work under Oppenheimer on the atom bomb project.

So I thought “the Americans are more open than the English, so I’ll try them”  – so I posted a notice on their site, and much to my surprise I had a reply.

A truck driver called Bunny was attempting to trace his father in Law’s war history, and his footprint was almost identical to Dad’s.

We corresponded for some time until I had an exciting email from him.

“I think I’ve found a way in.”

THAT WAS THE LAST TIME HE WAS HEARD OF!

The only reason for this that I can think of is that Homeland Security had monitored our emails, got suspicious and blocked any further communication.

What on earth had these people been up to? We are far beyond the limits of the Official Secrets Act so why cannot information be released?

It seems strange that with one year’s letters I can track him from London to Algiers, Algiers to Italy and Rome,  and to Hamburg in German,  yet the Home Office and the MOD are unable or unwilling to admit to having any information on his activities.

I know –  and again,  have his letters to prove – that he worked hand in hand with American Intelligence, but the one lead that developed from American enquires was suddenly eliminated without any explanation.

He always said that he was involved with the liberation of Dachau and Belson concentration camps and gave graphic details of these, but would never talk in depth about them, presumably the memories were too painful.

He also always alleged that he was in Berlin at the time Germany collapsed and was at the bunker where Hitler and his cohorts died.

Despite the rumours concerning Hitler’s death Father always asserted that Hitler died in that bunker.

Following up from that he said that he was in and out of the Russian zone, his brief being to track and capture Hitler’s deputy, Martin Bormann. He never did find him and concluded that he had made good his escape to South America. In the late 1980s, DNA evidence proved that Borman had died, probably in 1945, at the time Dad was hunting him in Berlin. You got that one wrong, Dad!

There possibly ends my question to “what did you do in the war Dad?”

Most of what you have heard is provable but some of it is just hearsay. Maybe someday I will press the correct key and the whole story will come out.Who knows? Too many secrets have been buried and those that can remember have either died or are too old to be credible.

What on earth DID you do in the war Dad?

I will end this tale of intrigue with a quote sent to me by my son Paul from Leo Marks, head of the Codes Office at the Special Operations Executive during WWII.  He described the SOE as

pitted and pockmarked with improbable people doing implausible things for             imponderable purposes, and succeeding by coincidence.

Is it coincidence that I have letters giving certain information that authorities deny? Are they hiding information or does it really not exist? Another mystery that may never be solved!

So sixty years after he returned home the question still remains unanswered:-

“What did you do in the war Dad?”

So, James Herman Lucas, did you really exist? I may not know, and may never know,  what you did in the war Dad but we’re all very grateful that whatever you did, it worked-and the allies won. James Herman Lucas or whatever, I’m proud of you.

If I knew all the answers it would be a very boring story.

Postscript

I travelled into the Sahara Desert riding a camel a few years back, with the romantic notion of following in my Grandfather’s footsteps – and finding the wreck of the staff vehicle my father mentioned, covered with sand but somehow containing a jaunty note from my grandfather in the glove compartment. Although my fellow travellers rode their camels with dignity, I was crouched over mine like some sort of bloodsucking parasite, holding on for dear life, as a local villager threatened us ‘Westerners’ with a very sharp and very large knife. He was eventually placated, and we spent the night at a beautiful Bedouin Camp. The car remains lost to the desert.

A Beehive In My Heart and marvellous errors

the four chambered heart

Last night, as I was sleeping

I dreamt – marvellous error! –

that I had a beehive

here inside my heart.

And the golden bees

were making white combs

and sweet honey

from my old failures.

– Antonio Machado, quoted in The Fourfold Way by Angele Arrien (Harper Collins, 2003)

This time last year I couldn’t bear going into work.I was told it was a kinda PTSD response. Entirely natural, it turns out, following life threatening illness or surgery.

Seems like it all just caught up with me.

I had a few chill pills, a lot of love from family, some workplace support, and a really helpful therapist. I’d chosen her to ‘do’ EMDR (Eye Movement Desensitisation and Reprocessing) on me. In fact, we just talked, and I learned the difference between ‘surviving’ and ‘thriving’. Day to day survival had been challenging enough. The very thought of going beyond that, into ‘thriving’ was – and still is – challenging.

I returned to work. I survived again. I’d planned to practise thriving this year. Looking at some volunteering work, finishing off some writing project and starting some new ones. Some courses to sign up for. Some of it’s been achieved. Then I had investigations around anaemia – colonoscopy and endoscopy, cameras should into orifices they had no business being – and the DVLA and my consultant have confirmed I’m not allowed to drive.

All of which is a shock, and things I’d have found very challenging to cope with this time last year. So there’s progress. I’ve achieved a counselling qualification, and some form of hypnotherapy qualification, and at least a working understanding of the power of the mind and trance work.

I haven’t yet fallen in love. Although my heart breaks easily and pretty much every day. Smiles, looks, smells and touches can all promise more than they give.

As part of my own recovery, I attended the first part of a training in ‘shamanic healing’, which I wrote a little about in an earlier blog the raven, the beaver and making happy tracks in ordinary reality. I’m not a Shaman, and I don’t claim any special insight or spirituality, but I wanted another way to help understand the impact of trauma and healing, and found it helpful and grounding. I do use much of the knowledge  on myself, and in my work as a psychotherapist.

Recently, I finished reading The Four Fold Way by Angeles Arrien, which develops some of the shamanic/First Peoples understanding. The Paths of Warrior, Teacher, Healer and Visionary are explained from the perspective of native spirituality – very ‘New Age’, I’m sure.

The Healer is encouraged to ask how they help heal the four chambers of the heart daily:

“Am I full hearted. open-hearted, clear hearted and strong hearted?”

Some simple questions I now practise. Am I full hearted? How many times have I approached situations or people in a half hearted manner?! To be half hearted is a ‘wrong placement’ – how much healthier, stronger, empowering to be ‘whole hearted’ or ‘full hearted’!

Am I open-hearted? Not naive – but opening and softening my heart, rather than closing it down through defensiveness or fear.

Am I clear-hearted? Do I have clarity of purpose, or am I doubtful, ambivalent or indifferent?

Am I strong hearted? Physically, I’ve been all too aware of the vulnerabilities of my heart over the last decade, but this is a question about courage. Can I be authentic and courageous today? The author, Angeles Arrien, locates the etymology of the word ‘courage’ to the French coeur, or ‘heart’ and “the ability to stand by one’s heart or to stand by one’s core.”

Instead of asking when someone became anxious, stressed or depressed, the shamanic healer might ask;

When did you stop dancing? When did I stop singing? When did I stop listening to and telling stories? When did I sop enjoying silence?

The ‘shadow’ of the Healer is the Wounded Child of the South, preoccupied tieh the Four Universal Addictions:

The addiction to intensity.

The addiction to perfection.

The addiction to the need to know.

The addiction to being fixated on what’s not working rather than what is working.

Shadows, addictions, hearts and minds. Warriors, Teachers, Healers and Visionaries. All parts of my world. sometimes helpful, sometimes unhelpful.

And as for love – that’s another adventure yet …

Keep Britain Bona – let’s troll together towards our fantabulosa futurette

Keep Britain Bona!

Keep Britain Bona!

I voted, very early this morning. Going in, I met a lady from my yoga class coming out, though didn’t dare tell her how much I was aching from the hour and a half class that had stretched and stretch for two hours. I’m the only bloke, so I feel I have to be butch. And try to contain my trumps, which is much more difficult.

We has a fair stream of people coming and going, which is encouraging to see. Our voting site is an outbuilding from the local school. It’s where the students are counselled, and so it’s great to see there are positive messages everywhere about self-esteem, and sharing, and caring. It’s a nice place to be. Last time I voted, there were a lot of posters and leaflets being affirmative about LGBT identity, how important it is to value yourself and others. Other friends have told me about how they’ve had UKIP supporters threatening to stab people outside their Voting Station. I wasn’t surprised.

After voting, some bloke turned up to  drive my car off for its MOT, as I’m not allowed in the driving seat anymore. There’s an analogy there somewhere.

I get a kick out of voting. I recall going to vote not long after Nelson Mandela had ben released, and stopping to think how important the whole thing really is. Tomorrow is VE Day. I’m not on celebrating war, but I know far too many people were killed, and that my ancestors have made huge sacrifices just so I can turn up and use a stubby little pencil to put a cross in a box.

I know that voting isn’t the end of it all. I’ve been an activist, I’ve been on protests and marches and parades, and I’ve campaigned. Occasionally I’ve taken (peaceful) direct action. Once upon a time I handed myself in tot he police for being a ‘Sex Criminal’ when the Age Of Consent in the UK was discriminating against queer sexuality. I may or may not have been dressed as a nun at the time. And I wrote about my experiences during the Poll Tax ‘Riot’ in a previous blog here.

I’m not ‘tribal’ in my politics, but have a lefty bent. I admire those of my friends who have been grafting hard on behalf of professional politicians who really don’t deserve half the support they’ve been given. This year, so much has been stage managed, to the point where politicians feel it’s perfectly OK to just not engage in television debates or with real members of the public anymore.  My hero of this election is the ‘hyacinth heckler’ who accused PM David Cameron of racism for the way he and his party have depicted the Scottish National Party. How great to hear a real voice amidst the din of commentary, fawning, political pandering, obfuscation  and downright lies. I’ve mostly been a ‘hacktivist’, tweeting and posting any old stuff that seemed to me to reflect some of my agenda. It’s all second hand, and so I take the time to thank and acknowledge those who have worked really hard to engage people like me in the political process, to persuade and argue and cajole, to stand on doorsteps and street corners and challenge, and debate, and get sworn or laughed at. And those who sit for hours staffing the election booths – when I spoke tot he two people at my election office this morning, they told they’d sworn’ Never again’. I thanked them for never saying never. Because, without them …

Having said that, locally we also have a little local ‘colour’ this year. Which is a polite way of saying the extreme right wing, in its various historical guises of BNP and EDL, have been out peddling their usual xenophobic nonsense. It comes in shades, from dilute forms of UKIP through to a new manifestation in ‘The MAINSTREAM Party’, who proudly proclaim ‘We don’t do Minorities’. Their election slogan is ‘Britain and Europe back to Normal. NOW.’ I don’t even understand what that means. I won’t bore you with the details of their ‘manifesto’, but it appears they’re not as keen on The Gays as our local voting booth is. There’s quite a lot of tutting and repressed anger involved. But if you want to know more,  the Mainstream Candidate has given his contact details – 07931 084762, or e-mail info@mainstream.org.uk.

I didn’t vote Mainstream. And although today we’re being urged to vote for the ‘less bad’ option, I truly voted idealistically and with my heart. That’s as strategic as I get.

Yes, of course I voted to Keep Britain Bona. In a way, every vote does that. Buck the trend and get involved. Have your say – vote, but don’t leave it there. Bang a drum, shout a chant, sign a petition, hacktivate. Challenge, hope, change.

Say No to Normal.

Enjoy The Silence

silence

Shhhhh ….

Shhhhh…..

Can you hear it? Can you hear it?

Can you hear nothing at all?

Can you just enjoy the silence….?

I was at a yoga class last week. A nice sunny evening, so we decided to do the class outside. On the lawn. Which is astro-turf, and full of ants. So as you might imagine, my mind was distracted anyway. I’m not terribly good at the whole focus and mindfulness thing, even though I do practise. It evades me.

And as we settle in, scan our bodies and get in tune with ourselves, focussing on the breath – like all good yoga practitioners do – we were encouraged to ‘enjoy the silence’. And the more I tried to enjoy the silence, the more I could hear. Planes overhead. Birdsong. Cars starting. Police sirens wailing in the background. Children laughing somewhere (up to no good, I imagined). My class members fidgeting and breathing and the gurgling of their bellies. An occasional fart (oops, apologies.)

And my heart. Beating.

I haven’t enjoyed the silence sine the heart operation almost two years ago, and the installation of a mechanical heart valve following my heart breaking, tearing apart from the stresses and strains of ordinary life.

In recovery, I thought I was imagining it. That the anxiety and trauma had fixated me on the sound of my heartbeat, thumping around my head and not  my body. A self-imposed marching rhythm, a private dialogue that I had punished my frailty with.

No. It’s real. The loud and regular workings of a mechanical valve – my audible bionics. Sometimes unnoticeable, sometimes deafening when all around is silent. In the middle of the night, when I wake from a night terror, or at the buzz of a morning alarm, it seems to boom around the house, like the woodpecker boring into a tree I heard in our spinney last week. It’s loud and inescapable. For me, it’s the sound of life. As important as the sound of my breath, of involuntary farts, of gasps at scary movies and the moans of lovemaking. The Universal Om.

And I yearn for silence. I want the only noise to be that which is around me, that I can tune in to the soft heartbeat in a lover’s chest as I rest my head on their chest on a lazy Sunday morning. The dawn chorus, the last note of a song sung and finished.

And yet, I dread the silence. It will be the loss of life, the end of days. As long as there’s the click of a valve, the turning over of life itself, I know I’m still here. I know that every part of me is still engaged, still journeying through life and all of its noise and music and tears and laughter. The fall of the surf and the wind in the trees. The alarm of the bell, the march of boots, the baby’s cry. Dog whistles out of my range, tremors on other planets and in different galaxies.

It’s all there, in the heartbeat. The constant sound of life, and of  living.

Enjoy the silence?

No. C’mon, feel the Noize…

More Than Chocolate: On Easter, Agape, coming out and the joys of renewal

more than chocolate

more than chocolate

At every moment you choose yourself.But do you choose your self? Body and soul contain a thousand possibilities out  of which you can build many I’s. But in only one of them is there a congruence of the elector and elected.Only one – which you will never find until you have excluded all those superficial and fleeting possibilities of being and doing with which you toy, out of curiousity or wonder or greed, and which hinder you from casting anchor in the experience of the mystery of life, and the consciousness of the talent entrusted to you which is your I.

– Dag Hammarskjold

Easter always feels very special to me. Partly because it changes every year – a movable feast. Partly because of the Spiritual meaning and mysteries drilled into a young Catholic boy. And partly because it’s the anniversary of my Coming Out.

As it happens, I’m Coming Out was the song chosen to represent the Opening Of The Tomb and Resurrection of Jesus in a rather dubious rendering of the gospel to the music of Diana Ross, performed under the title Agape at my school by a renegade ‘brother’ who turned out to (allegedly) be on the run from tax authorities in another country, and who had forged himself a reference in order to seek refuge in a Boys’ Catholic Boarding School (ahem). His version of the gospel even included the Crucifixion performed to Upside Down. Even when ‘Luis’ cast himself as Jesus, and performed in nothing more than a gold lame  ‘g’ string, the audience and school didn’t seem to twig that there might be something amiss about this peculiar  ‘re-interpretation’ of the gospels and its author. It was the 80’s and everything was a little ‘glam’. I was offered the part of the Roman Soldier Longinus who pierced Christ’s flesh with the Spear Of Destiny. I turned it down – not on aesthetic or religious grounds, I’m afraid. I thought the part was too small.

Eventually, it all Came Out, and Luis was escorted to an airport where he was given a one way ticket out of the country. Brushed under the carpet and Someone Else’s problem.

I celebrate my own Coming Out at Easter every year because … well, I first ‘came out’ at Easter. If there was indeed any ‘coming out’ to do. I was never butch, and didn’t particularly hide crushes on classmates, teachers, Captain Kirk, The Six Million Dollar Man, even the cartoon Spiderman, particularly well. The New Romantics kept my sexuality camouflaged in gender bending fashion, and a theatrical ben offered me many opportunities to be a little luvvie.

And I developed my first serious crush at Uni. Falling for an American exchange student – well, as it turns out, at least my gaydar was in good working order. And I invited him to stay with my family one Easter. At some point, I blurted out that I was like one of the characters in Caryl Churchill’s dramatic exploration of sexual politics, Cloud 9, which had just been produced at our university. It was a way in. He kindly recognised my inadequate stumblings, and calmly accepted what had been said. All of a sudden, it was ‘Out There’. I’d come out of a dark tomb and entered a bright, scary new world.

Probably, the only person I’d come out to was myself. I said the same things several times to different people, in slightly different ways, and it always seemed like there was no surprise, just a witnessing to my own re-creation each time. Even my parents, in a tear filled and awkward last minute family meeting I called.

So I like the spiritual mystery of Easter, and the childlike magic of bunnies and Easter hunts, because the theme of personal and spiritual renewal is a universal and important one. Even if it takes place whilst wearing  a gold lame ‘g’ string, and to the soundtrack of Diana Ross.

So, dear lover, through this world of mine that I weave for you here, methinks sometimes I see you moving.

And I wait of you that in time you also spread worlds equally beautiful, more beautiful, for me.

[Not in written words only, but in spoken words, or the mere sound of the voice or look of the face, and in beauties of body and limb and brain and heart, and in beauty of deed and action, and in a thousand ways.]

– Edward Carpenter ‘Lo! what a world I create’


Now We Are 25 – The Poll Tax : A pot of tea, a riot, and the power of one small word

poll tax

 

Somewhere, in that melee of placards and optimism and camaraderie, there’s a young politically awakening me, scrabbling out of the 80’s but probably still sporting the last vestiges of New Romanticism. I’d been slapped awake by the Smash Clause 28 campaigns and a suddenly politicised Coming Out and University Course that had veered from pantomime into agit-prop and socialist theatre via Theatre Of The Oppressed, forum theatre and Theatre-In Education. I was writing and researching ‘gay drama’, and we were on the cusp of ‘Queer Politics’ via AIDS activism and direct action.

On 30th March 1990, I joined a whole band of merry mischief makers beguiled by the ‘Can’t Pay Won’t Pay’ campaign against the proposed Community Charge or ‘Poll Tax’ . I’d arranged t meet up with a friend – a veteran of Section 28 marches, and of the Greenham Women’s Peace movement, so a little more radical than this Drama Queen. We’d walked the length of the march, and had been struck by the sheer good-naturedness of the whole thing. We’d chatted with lovely pensioners, and parents with kids in wheelchairs, a few familiar faces from Anti-Section 28 marches, and oddbods we knew from London. I’d moved down the year before to live with a houseful of student friends and friends of friends somewhere in Walthamstow. But the whole thing had been delightfully ‘genial’, empowering and what the media always referred to as good natured.

 

And it was HUGE. I’d given up relying on crowd number counting, as guesstimates varied from police suggestions of dozens to to breathless activist boats of millions. I knew there were lots. And lots and lots of us.

 

It has gone so well, so delightfully peacefully, that my friend and I decided we’d go and celebrate in the cafe under St.Martins in Trafalgar Square. The dmo could do without us for a half hour or so and to be honest our feet were aching and our throats were hoarse and yes, we were pretty parched, now you come to mention it. So we went down into the basement, amidst the smell of Earl Grey and Builder’s Brew and Carrot Cake and Scones with jam, and people chattering excitedly and, yes, good naturedly.

 

Something happened while we were down there. I’ve never really found out what. We decided it was probably time to be going home now, because it would be great to see if the media actually bothered to cover this march, so we went back up the stairs and

 

FUCK ME. Almost knock over by charging coppers on horseback, racing right into the crowd, as we held on to each other standing on the kerb, mouths agape. It was what I remembered from Planet Of The Apes, when the humans get hunted down by the military Apes on horseback, blowing trumpets and throwing nets to enslave the frightened crowd.

 

We couldn’t get home. We couldn’t get out. We got herded over to the opposite end of Trafalgar Square. ‘Pretend we’re a couple’, my friend shouted. ‘They’re more likely to after Queers and Lezzies.’ She was right, and we held hands like a courting couple, but the Force was unleashed, and seemed riled at something. The riot police charged into us, helmets and truncheons and shields, pinning us against the wall. And fists. Beating down on us indiscriminately, and catching me in the nuts in a carefully hidden swing between my legs. This really wasn’t cricket, and it really wasn’t terribly British.

 

The next day, I tried explaining it to work colleagues. All of a sudden I was labelled a renegade troublemaker, and told that we ‘must have done something’ to deserve it. No, no, I kept saying, it was all terribly good natured.

 

It’s a day that has stayed with me. Both the power and fury of the crowd, the sense of resistance and community. And the attitude of Them  and Us and the tools of State being abused and abusing. The naivety and incredulity that I’ve never had since.

 

And one word has grown in my vocabulary. One word that I really learnt the meaning and power of. And a word that was a stronger force than any of the batons of fists or bricks or charges or kicks and sticks and stones.

 

No!

 

 

Outside The Box: Coming Together

Outside the Box (200x300)

Delighted to be included in this ‘Coming Together’ project, with a short story inspired by a trip to beautiful, wild, brilliant Iceland:

 

>> Coming Together and editor Nobilis Reed are pleased to announce the contents of the upcoming collection, Coming Together: Outside the Box, an anthology is dedicated to PG Holyfield, who passed on August 20, 2014 after a brief and vicious battle with cholangiocarcinoma.

Launch is planned for Memorial Day weekend 2015 at BaltiCon.

All proceeds from sale of this anthology will go to The Cholangiocarcinoma Foundation, a research foundation dedicated to collaboration, understanding, research, and education of this rare but deadly disease. PG Holyfield’s novel, Murder at Avedon Hill was one of the first “podcast novels” and his work in this area marks him as one of the pioneers of the podcast novel form.

Due to PG’s years of work as an audio podcaster, an audio edition of the anthology is also planned.

This will be the third Coming Together anthology edited by Nobilis Reed. His previous anthologies areComing Together: In Flux and Coming Together: Arm in Arm in Arm….

CONTENTS

  • To Boldly Go (Lisabet Sarai)
  • A New Man (A.F. Grappin)
  • Geyser (Lukas Scott)
  • Lyon’s Den (Leigh Ellwood)
  • Pioneer (Ian Jade)
  • Getting Plowed (Nobilis Reed)
  • The First Choice (CM Brooks)
  • Breeder (Nickie Jamison)
  • Dear Doctor (Salome Wilde)
  • Shadow (Precea Warren)
  • Perfect (Jennifer Melzer)

More at : Coming Together

‘They Don’t Like It Up ‘Em’, or Carry On Behind – on medical cockadong bumming

dont like it up em tshirt

This morning is the start of my preparation for a colonoscopy – some sort of medical procedure where the doctor ‘introduces’ a camera into my lower bowel through, ahem, the ‘back entrance’. I’m not exactly relishing the thought, but am told it’s a routine procedure, not painful, and that I’m sedated throughout.
Earlier this week I also had a gastroscopy – tube down the throat – which was much less uncomfortable than I was expecting/experienced previously ten years ago in preparation for mitral valve surgery. It was over in the blink of an eye, and the only real side effect has been a bit of a sore throat afterwards.

So, for the last 10 days, in preparation I’ve stopped taking warfarin, and had to learn how to self-inject with clexane injections. It’s not great fun – I’m admiring injecting drug users who can find a new site for their injection every time. perhaps I just don’t have enough skin around my ‘love handles’, or am too conscious of not going too near my remaining scars from the heart surgery, or just a little nancy about sticking myself with a needle. But I’ve managed for over a week, and only pricked my finger once. This Beauty isn’t sleeping yet…

And, a little too late, I found out I needed to stop my iron tablets. Which caused a bit of a furore and a kerfuffle, as they needed to be stopped a full week before they go in. So, procedures were hastily rearranged and I no longer needed to take a day off work because of the dreaded ‘Evacuation’.

We’re two days and counting now, which means starting a ‘low fibre’ diet. Not full of choice for vegetarians, as it means nto eating any fruit or vegetables for 2 days. I’m having to be a little broadminded with my menus.

So – breakfast is fine. Toast (white bread) and even marmalade is OK. With a cup of tea, it’s practically my usual routine.

And lunch after the gym allowed for poached eggs on toast. Not too much of an ordeal so far. I could even have some chocolate with my tea and – if I wanted, and had some – madeira cake. Mmmm … cake ….

‘Evacuation’ Day

The day before the bumming procedure is a ‘fluid only’ day, although I was allowed a breakfast of (slightly burnt) croissants and tea, preceded by my clanex injection.

At ten o’clock, we start the ‘Evacuation’ process with 5 senna tablets, which I thought was just the butt (ahem) of many a Round The Horne innuendo and double entendre (‘Second meaning? I don;t think it had a first, duckie’ as the inimitable Kenneth Williams might say).

From now on, fluids and loo stops only ….

At 2:00 pm I have the intriguingly entitled ‘picolax’ drink mixed with water (is it an animation studio, or a musical instrument?) – with the warning that ‘it might get hot’. I also want it to bubble and form smoke, like a proper Jekyll & Hyde potion ….

The climax of the day – as it were – came at 6:00pm with a combination of two sachets of ‘moviprep’ (which sounds as if it should be a bag of popcorn for you to take to the cinema, but is a rather bitter tasting litre preparation of essential flid, minerals and electrolytes which can otherwise be lost through the evacuation process.

This is the point at which the bottom fell out of my world, and my Netflix programming went on permanent pause to allow me to dash in and out of the smallest room, and to test the power of my Blue Loo cistern insert.

As the say in one of my favourite films, Bridesmaids, ‘it’s coming out of me like lava’. Unlike the infamous scene from that film, I didn’t shit myself in the middle of the traffic wearing a white bridal gown. There’s always someone else worse off than you. And I didn’t shit the bed, which was nice.

It was, however, pretty exhausting, and I wish I’d read the instructions about using a topical barrier cream to protect the Ring Of Fire before starting the Evacuation process. Mother, bless her, had left a whole tub of KY petroleum jelly on the bathtub, which I was a little forward of her, but which now seems to have been her been thoughtful about my bumming the next day. It domes to something when your mother knows more about anal penetration that you do.

So the day arrives, and I’m really hungry, thirsty but don;t want to drink too much fluid in case I accidentally fart and ‘follow through’ with more lava – if there’s any of it left!

All goes well, and  I deliberately wear my Dad’s Army ‘They Don’t Like It Up Em’ t-shirt just to inject a little light entertainment into the proceedings. My nurse offers me sedation, which I almost immediately accept until I quip ‘It depends what the Doctor looks like’, in the hope that in the middle of the procedure some handsome medic will look at my backside and think ‘Nice butt, must remember to ask his number afterwards.’ Although I’m sure the doctors probably score our butts in that psycho gallows humour way that all medics do. For the record, mine is a 10/10.

‘Good luck with that’, the nure quips back, looking at the doctor’s name on my records.

It’s an age in the waiting room, and the poor guy called in next is hiding in the toilet when his names is called out. I spend the time listening to my ipod on shuffle, which ranges from ‘Round The Horne’ to The Sex Pistols in the random way that I like.

Eveentuallt, I’m called in, swishing in my hospital gowns (one being used as a cape – I kid you not!) and back flap shorts and Dad’s Army T-shirt, carrying a drab grey hospital propety bag with street drag and my ipod in.

Carry On Behind

Carry On Behind

The nurse is right. My Doctor’s nice, but I’m glad it’s a medical cockadong he’s inserting into my rectum and not the throbbing gristle that I’d welcome from some Hollywood hunk. I do, however, like the fact that he likens the giving of the anaesthetic to a shot of gin and tonic, and also decline his offer to watch the whole procedure on the television screen. ‘Is it being broadcast on the internet?’ I ask, a little nervous after all the publicity about revenge porn lately.

I don’t notice him enter, and it’s all over before I know what’s happened. Not unlike previous intimate encounters of a less medical bent. And at last this time, I get a tea and biscuit and a recovery room afterwards (jemmy ddgers, bourbons AND digestives – so a few packs make their way into my dreary grey hospital property bag.

It’s over. I walk out like a cowboy from my erotic novel Hot On The Traila little weary and saddle-sore – but the results are good, and my butt isn’t full of nasty surprises. Mind you, there are a few tricks I could have taught him ….

It’s been an adventure, and in future I hope the only thing going near my perky butt in future is a young man’s big cock, without a camera attached …. call me old fashioned, but I love the smell of latex in the morning.

 

 

 

2-4-6-8 Motorway No More – on losing my driving licence, and abusive driving instructors

DVLA have taken away my driving licence, and it feels like they’ve taken away my freedom and my future. It’s difficult for me to see the road ahead, as it were.

It’s been a long journey since my heart surgery. One of the unforeseen results appears to be that either during the surgery, or in a mini-stroke afterwards, my brain was temporarily deprived of oxygen, and as a result of this some of my visual cortex atrophied. Nothing too serious and nothing that I’ve noticed. But it’s been picked up by machines and tests I find confusing and don;t understand. Neither my optician nor my Ophthalmology Consultant considered it  to restrict my driving, but – after a test at Specsavers – DVLA do. The test was a guessing game involving flashing lights coming and going, like a second rate fairground attraction, next to the Tarot reader predicting your future.

I received a letter full of gobbledygook that I didn’t understand after driving home on Friday night. And that was it. The car stands where I parked it, and I’m prevented from driving any further. My parents are escorting me around, like I’m 16 again. I’m having to make arrangement at work to work at home because otherwise – well, that’s my job, and livelihood gone, following a letter one Friday night. No help or support offered, just a demand for me to return my licence. Which also annoyed me, as it’s a proper traditional paper licence, before all this nonsense with photo ID came in. So as well as a future, I’ve lost a little piece of my history too.

The thing is, I’ve always hated driving. It’s never been a thing of joy, or open roads and wind in my hair.

I started learning when I was 17. My parents, quite rightly, thought it would give me some independence, and better job prospects – and give them a break from the daily taxi return that a lazy selfish adolescent boy demands. They kindly booked me a series of driving lessons with a local instructor, in the hope that I’d be on my way to becoming an Independent Young Man.

He was a tyrant, a master of manipulation and psychological torture and abuse. He’d smile nicely to my parents, take their money (in advance) for the lessons, then close the car door and turn on me. Phrases I remember include:

‘You’re like Frank Spencer. But he knows what he’s doing.’

‘You’re worse than somebody who’s deaf, dumb and blind.’

‘Stupid.’

‘What is wrong with you?’

There was more, much more. A boxing ring of abuse.

For some reason, I’d become the dumping ground for all his frustration and anger in the world. His son went to the same school, and was having a difficult time, while I was a ‘model pupil’ and I suspect this was behind his ire against me.

Every time the lesson came around, I’d sit on my bed shaking with fear and anxiety. I didn’t feel I could tell my parents, because they’d paid for the lessons and I didn’t want to let them down. Eventually, worn down in lesson after lesson, I broke down in tears and explained what was happening. He absolutely denied the abuse and ‘didn’t know’ why I would stop, because I ‘was doing so well’.

And I couldn’t face another driving lesson for 16 years. I moved to study in Aberystwyth, where cars were a luxury and unnecessary because we had the gorgeous Aberystwyth Sprinter to get us from the seaside back to real life. And then to London, where public transport is de rigeur.

Then my father was involved in a near fatal car crash. None of it his doing, just some unexplained driver crashing into hs life and changing ti forever. My brother and mother, family friends, rallied round to keep his business going, help him recover,drive him to hospital appointments, deal with the practicalities of a world that relies on being able to drive a motor car.

I felt useless and unable to contribute. So I became determined to drive. To break the spell cast over me by a bad driving instructor who’d gone about attacking and undermining my self-esteem.

I lived in a shared house, and didn’t want my flatmates to know I was learning to drive. The shame of failure went deep. So I signed up to a driving school but wouldn’t let them pick me up or drop me off from the flat. I started learning with a female instructor, and everything was different. I explained what had happened previously and she was appalled. She wasn’t perfect – I made mistakes, and she shouted at me, lost her cool, but we eventually got to the first test. I failed, and wasn’t surprised. I hadn’t felt ready, but things were different. I’d earned to drive in London, and got to the point where I could take a test. I’d got behind a wheel again, and that felt hugely important. I was a driver, not a passenger.

I moved back home, and continued driving with another instructor. I passed the next time, and we were both surprised. We even hugged. ‘I knew you were ready,’ he said. ‘You just lacked confidence.’

I can’t imagine not driving now. I am always grateful whenever someone else offers to drive, and on long journeys, always opt for public transport. But being deprived of my independence – being able to drive to the shops, or see my parents, or the doctor’s, or the cinema because I feel like watching a film – I can’t see that. In my head, I mean – because I can see it fine on the road. Despite what the DVLA and a rather dodgy eye test says.

I’m appealing. There’s still too much fight and anger against my first terrible monster of a driving instructor. And, like there was in that 17 year old self, there’s a determination for freedom and independence that I forgot was there.

In the meantime, I dream of driverless cars and transmat machines and shirtless chauffeurs in huge stretch limousines with drinks cabinets and wide screen televisions. And ignore the reality of what life without driving might be.

Lukas Scott Is Required – On ‘a positive change to the care of future patients’ …

Lukas Scott is required

Lukas Scott is required

So I had a few days in London. It was great to meet up with many friends, whilst the world found out about the massacre of Charlie in Paris. I saw plays,mime, got a hot shave and my hair styled in Mayfair, as well as a bit of shopping at Fortnum & Mason. I stayed in accommodation opposite the BT (Post Office) Tower, infamous for housing the WOTAN supercomputer in The War Machines serial of Doctor Who, which summons people to serve its will – hence ‘Lukas Scott Is Required’. These are the sort of things people do when they’re in London – a world away from when I first went down in the  1980’s to meet friends, or set up home there in search of independence and whatever ‘gay liberation’ London in the 1990’s had to offer. It was the time of AIDS, and homophobia, and a time when I dreamed that theatre would help me make a positive difference. That things could change, and imagination and creativity were weapons of resistance and progress.

I left London with a strange sense of loss – of some of my own endeavours – it’s been a different path chosen to the one originally planned, of health issues – it was an exhausting trip, but most tellingly of friends I’ve lost, probably a theme that’s continuing from my last post. I came home to a slew of letters relating to health conditions, but was most pleased by the result of the complaint I made regarding a failed MRI appointment at the end of last year – the text of the original complaint was included in my earlier post  I will Be Heard. Most importantly, it’s good to know I have changed local hospital policy in a positive way, as acknowledged in the letter:

I am pleased to see that this has clearly demonstrated that your valuable feedback
of your experience has made a positive change to the care of future patients

The full text of the response to my complaint can be read in the following link, which deals with particular points I made not only about hospital processes and procedures, but also staff attitude and how patients are treated- uch letter. There are also some interesting points about ‘out of hours’ working and treatment.

Additionally, I had copied my complaint in to the Care Quality Commission, who responded by outlining further avenues if I was nto happy with the response to my complaint, including:

http://www.ombudsman.org.uk/ (the Parliamentary and Health Services Ombudsman)

http://www.healthwatch.co.uk

http://www.cqc.org.uk

I have included the correct links, as half of the links supplied were actually incorrect. Tellingly, the PALS website reveals how low a priority patient feedback is for funding and support:

PALS online is no longer operational
This site’s content was provided by the efforts of unpaid contributors. Technical support and hosting was also provided by the site’s developers for a number of years without any financial contribution from the DoH. Despite our belief in the importance and value a national Patient and Advice Liaison Service online resource provides, we can no longer support a resource that should be a responsibility of the DoH.

Thank you to all those who have actively contributed and produced thousands or articles, research and reports, and contributed to creating one of the largest NHS service and associated health related links databases. Finally, we are proud to have helped hundreds of thousands of patients, their friends and families, carers and health workers who have used PALS Online’s office directories, signposts and guides.

I have, of course, made the CQC aware of their errors….
Must go. Lukas Scott Is Required ….

#viewfromafridge: Boonoonoonoos – 2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,600 times in 2014. If it were a cable car, it would take about 43 trips to carry that many people.

Click here to see the complete report.

Everything Has Its Time

liberty address book

I’m finally letting go. I’m finally giving in.

The end of the year is drawing near, a year that’s been so full of change, and reflections on survival and what and who are important to me. I’ve carried with me my old diary – a 1990s black A5 filofax weighted down with memories and contacts, snatches of lives I used to know. The good, the bad, the close, the intimate, the acquaintance, the lover, the family, the well known and the half remembered, the local and the global.

I’m getting a new address book. Look, it’s pretty, a nice Liberty Art Nouveau fabric print cover. Something to treasure.

It’s hard for me to say goodbye. I am, at heart, a sentimental old fool. All of the people in my address book have been important parts of my life at some point or other – work colleagues I spent day in and day out with, children I sponsored, friends and family I accompanied through grief and loss of a shared special someone. Some have died, some have moved, some have disappeared, some have never spoken to me since, and some I’ve moved on from.

In my Soul Retrieval training, we’re taught that we can unknowingly carry part of other’s souls with us when we do not let go. This can hurt them and us. I’m not big on souls, but it feels freeing to end a chapter in order for me and others to move on.

And nothing is lost, nothing is wasted. I still have tears of joy, laughter, ecstasy, when I see these names, and think of these places. But, as the good Doctor says in Doctor Who:

Everything has its time.

Some of those who I want to thank and say fare well to their old time, their old places, are:

Steve, Adrian, Ian, Keith, Mary, Tommy, Jason, Angela, Michael, Colin, Peter, Paul, David, Paul, Dave, Sajda, Deek, Dee, Edward, Andrew, Alex, Fiona, Danny, Nick, Elaine, Geoff, Jackie, Hannes, Gordon, Lee, Louise, Guy, Tim, James, Rachel, Duncan, Padraig, Nuala, PP, Mark, Alan, Rob, Vicki, Michael, Jan, Perrie, Mary Jane, Keith, Julian, Kellan, Gavin, Sarah, Tina, Lizzie, Piyush, Nigel, Shaun, Steve, Charlie, Mark, Sid, Barry, Shamu, Vathenay, Tracy, Wes, Andrew

So  no doors are locked. Sometimes, these people have visited me in dreams, sometimes I’m blessed with a whisper, or a virtual contact. It’s all welcome.

There is plenty of space the new address book. You’re all welcome. Let’s stay in touch.

No Guts, No Glory – Confessions of a Zombie Survivor

No guts No Glory - a zombie war cry

No guts No Glory – a zombie war cry

Last weekend, I was filming, darhling, sweetie, lovey. As a supporting artist, or a featured extra. Or ‘just’ an extra.’ But, ‘there are no small parts, only small actors’, as I was told when I spent three years studying drama. Make it your story.

It was my second attempt. The first was a disaster.  I’d answered a call for actors to participate in a zombie film (is there any other, these days?) and received all the details via email. Nice thank you for participating. No payment. Except the glory of the Big Screen. So I got up at 6.30am on a weekend, and drove myself (no chauffeured car, like Danny Craig probably gets) into the centre of Coventry. It’s not difficult to imagine Coventry as a zombie city, even at its busiest. It was, of course, the inspiration for Ghost Town by The Specials. And at 6.30 in the morning, even with a ring-road half destroyed for ‘roadworks’, there was no traffic to get in my way. Coventry has been described as  all ‘ring-road and car parks’ by many , although finding a car park now is difficult, even for a long standing resident. I was pleased to find one, get my ticket, and be informed that it was a cheap parking day (£2 all day).

Unfortunately, as the ticket barrier went down, I also realised that this car park was closed until 10 0’clock. And I was now caught between the closed ticked barrier and the car park shutter, which had been locked down. I tutted loudly, and tried to consider what a zombie would do in this situation. Fortunately, I found some buzzer that put me through to Coventry’s faceless Big Brother Traffic Control, who were able to tell me to reverse, as they re-opened the ticket barrier. I’m sure Danny Craig never suffered this sort of humiliation. Never mind, I thought, I can use that for my character. Zombies are probably often frustrated.

It got worse. I arrived at the filming location fifteen minutes early – I was always taught to be punctual for performances, it separates the professional from the amdram – and was surprised that there was no-one else who was visibly zombie-like or filmworldy. How unprofessional, I thought, wrapping myself up in thermal longjohns, vest, hat, gloves and coat, readying myself for a long cold morning of filming.

Then it dawned. Today was not going to be Zombie Apocalypse. As I looked down at the instructions I’d taken all the trouble to print out, I realised that I had turned up two weeks early. If I was Danny Craig, I could have blamed my agent. As it was, I’d made a stupid, stupid mistake. Never mind, I could use that for my character. Zombies are probably often frustrated. And stupid. Their brains have rotted. I sat down dejectedly on a bench, as Coventry’s tramps and drunks walked past me, sobbing ‘I want to be a zombie! I want to be a zombie!’

So this time, I’d double checked the date and time of filming, and checked out which car parks were open. I still had my thermal longjohns, vest, hat, gloves and coat, readying myself for a long cold morning of filming. And this time, when I arrived, there were people. With cameras and booms, and clipboards, and people milling around, which is what actors do. I was introduced to the cameraman, second director, runner, and a whole host of other Hollywood type people.

I sat quietly and prepared myself. I had very little information. And, technically, I didn’t have a character.  But, remember, there are no small parts, only small actors. So I invented my character, Lem, and took the billboard above as inspiration – No guts, no glory. Very appropriate for Lem, who clearly had some form of learning disability, was easily frustrated, and prone to depressive bouts of sobbing in public. I’d gleaned that the film was about some sort of virus affecting people and turning them into zombies. Although, technically, I wasn’t a zombie, as we’d sent in photos to be chosen to be ‘zombies’ or ‘victims’. If you hadn’t heard back, you were supposed to be a victim. I didn’t see Lem as a victim.

We got separated into two groups to do walking acting – this time milling professionally on screen. A couple of takes of ‘walking’ – some actors, apparently, were walking in French. Lem was walking to finish some Christmas shopping for orphans with disabilities in Coventry, because he had a Big Heart and an abused childhood.

Then we did walking from another angle, which is where it got Quite Complicated and I became Quite Confused (I decided Lem was also easily confused, which was probably part of his learning disability.) We were separated into ‘People Dying’ (infected with a virus, and taking a while to die dramatically), ‘Victims’ (people who just dropped dead because they’d been infected with the virus) and Survivors – people who ran away and survived. Now, I’d already established that Lem wasn’t a victim. So I didn’t quite understand why the director hadn’t chosen me to be in the Survivors or People Dying groups. There are no small parts, only small actors. And Lem had a story to tell.

So when they shouted ‘action’, I went with the Truth of the Moment.Yes, technically, the direction was that I should just drop down dead. But, Lem took over me, and I looked around at people dropping dead, and heard the Survivors running behind me and past me, and Lem made a split-second decision to run. Lem ran through every take.

It was exhausting. Lem wasn’t terribly fit, and his shins and legs were aching and on fire after several sprints. And probably his immune system was trying to fight off the virus.

Other actors followed the direction more closely – some might say they were more professional. I just think they weren’t truly in character. Although I did complement one actor on his walking. Although, when I said ‘I like your walking’, he didn’t seem to take it as a complement.

So – spolier alert – Lem has survived, joined the Eco Warriors – and is now available to appear in the sequel, Lem – A Story Of Survival. I’m just waiting to hear from the Director ….

Lem will be coming to a screen near you as part of  the Coventry Film Festival in 2015. Unless he ends up on the cutting room floor.

I will be heard: On being a patient, a guinea pig, and a stroppy queen

guinea pig stroppy queen

So, finally, I got round to writing a letter of complaint following being denied an MRI scan in November because staff didn’t have important information on the make and model of my heart valve to hand. The following is the letter I wrote, with a copy sent to the Care Quality Commission:

Dear [Name of  Chief Commissioner]

I attended for a MRI appointment on XXXX November at XXXX Hospital, following a referral  for loss of field vision. I was denied treatment because staff were unable to access details on my hospital notes regarding the type of aortic heart valve I had inserted following emergency surgery at XXXX Hospital in July 2013. I did request that they contact the cardiology unit for this information, or that I could do this myself if they had a contact number, but was still unable to be treated. The MRI nurse himself was polite when informing me that protocols dictated he could not undertake the MRI as there were not enough resources if anything went wrong, but it was not helpful for me to be told by another member of staff that I should know this information because ‘if it was them, they would want to know what was inside them’.

Staff suggested I contact my GP to rearrange, and the Radiology Bookings Team asked for the make and model details of my valve to be faxed to them. I requested, that they access this information on my hospital notes, and gave my permission for them to access these notes or to liaise with my cardiologist Dr XXXX, surgeon Mr XXXX, and/or my GP directly in order to get this information. When I spoke to my GP myself, he agreed to fax the information, but could not understand why Radiology staff were unable or unwilling to access this information themselves. He was only able to supply information which XXXX Hospital themselves had given him, and was available on my hospital notes.

There may be reasons for this, and I would like further information on why this is the case, and also what action you will be able to take to ensure this does not happen again? This was an unnecessarily wasted appointment, and has delayed my diagnosis and treatment.

  • Did staff have adequate access to my notes, or is the IT system inadequate? Is there a training issue here to help staff access relevant material, or does the IT system need to be changed?
  • Why were staff not able to problem-solve and retrieve the information from any of the sources I suggested? Is there a culture or attitude within the Hospital Trust that does not support or encourage this? Again, is this a training issue?
  • I was told that there were only two staff on duty, which would not have been enough ‘if things went wrong’. Is this a resource issue because the MRI was scheduled at the weekend? Would I have been able to receive better treatment if my appointment had been on a week day?
  • Do current procedures not arrange for important information such as heart valve details to be easily accessible between departments? How will you change procedures to ensure this happens?
  • Are there important medical details missing or inaccessible on my medical records? What safeguards are there to ensure that if I needed treatment the relevant information could be accessed?

I am currently awaiting a re-appointment, and have found this experience unnecessarily distressing, anxiety provoking and frustrating. I was told that this is not an isolated incident and may ‘often’ happen. I see no reason for this to be the case, and expect a better level of service from my local hospital.

Please confirm that my notes now accurately display relevant medical information, and I would appreciate your responses to the concerns this experience has raised.

I have had very positive experiences of XXXX Hospital previously, but on this occasion, I feel let let down by the processes in place, and the attitude of the Trust.

 

Yours sincerely

XXXX

 

On the other hand, I’ve just completed a 7 week online patient feedback research project for Macmillan. It was partly as a result of this that I felt empowered, and angry, enough to write the letter above. I learnt that poor treatment is unacceptable, and needs to be challenged. The project has been amazing – sharing experiences with other cancer patients and exploring issues of access and diversity. It’s changed my view of the whole experience, and helped me to re-process a traumatic and frightening journey ‘from the other side’. Although the notion of an ‘online research forum’ seemed dry and unappealing at first, we were given a range of fun, challenging and engaging tasks to explore how our needs were and weren’t met, and what changes could be made for other patients. I’m choosing to share some of my responses for the final week – a period of reflection and summarising the process and our viewpoints (I may have made some edits/changes for the blog):

your shout: anything that might not have been covered?

My experience has been one of multiple health issues, not simply cancer, and I think this could be addressed more fully. How do different departments communicate with each other. Who is a principal point of contact for the patient?How is information transferred/recorded between departments.?
I work as a counsellor, and I’d be interested in more research/information on the short and longer term impact of cancer diagnosis, and approaches which patients find help them dealing with it at different stages.

a cup of tea with your Dr – what I would say to my GP if given the opportunity to sit down with a cup of tea, and all the time I needed

NO, I don;t need a wife to help me feel batter, so don’t make assumptions about my sexuality.
When you need to examine my body, be professional and courteous – if you have hang ups about touching another man’s cock and balls, keep that at home and out of the consulting room. It’s not that easy for me, either.
The hoo ha about arranging emergency appointments, but not being able to tell me why, only made me more anxious than I was originally.
If you’rein the middle of a consultation giving me a diagnosis of cancer, don’t pick up the phone to answer a patient’s query about if they’d left their bag in your consulting room.
Thank you to the staff, doctors and consultants, who did take the time to show empathy, care and to understand some of what I was feeling. and to take time to understand what was happening.
Remember my name. I’m not done yet.
A joke or two along the way actually helps.

message in a bottle: if you were to send a message ‘out there’. what would it be?

I would like to tell the general public….many cancers are treatable. Don’t be afraid, except by politicians who dismantle or undermine the NHS and its treatments.

I would like to tell other people who have been diagnosed with cancer … hang in there, make use of the information and support at hand. You don’t have to be ‘brave.’

I would like to tell the family and friends of cancer patients …. It’s not just patients who are affected and who need support. You’re an unpaid healthcare system – what you say and do makes a difference.
I would like to tell employers … my employers have just stopped access to our Employee Assistance Programme, which provides counselling support. It helped me through a difficult time, and assisted my return to work more than any of the HR or OH rules and regulations. At a time of great uncertainty, I needed structure and support, and felt a pressure to return to work too soon because my pay was reduced.

I would like to tell Macmillan …  I’m very proud of my family involvement with Macmillan, and my respect for them has improved greatly.
I would like to tell the government ... Stop privatising the NHS, value its greatest resource more – the people who work for it. Don’t use people’s health as a political football – it damages our well-being and creates a negative and self destructive, fearful and anxious culture.

If there is someone else to whom you want to send a message in the bottle, just say whom and what your message would be!

A big thank you and hugz to all the participants . You’re amazing, honest, thoughtful and brave people.It’s been a privilege to spend some time with you.

The three most important things I have learnt are:

1. I’ve been very fortunate in my cancer journey, both in terms of diagnosis, support and treatment services.
2. Nevertheless, the journey was much harder than I had given credit to, and sharing experiences with other cancer patients has allowed me to come to terms with feelings and experiences I hadn’t owned up to. It’s provided a source of healing and care I hadn’t realised was important.

3. Sometimes you need to stand up and fight, sometime you need to lie down and take a nap.

 

And the best thing about the project, and the hope that I have for writing a letter of complaint, was a very simple thank you response, ending with one important line:

‘You will be heard.’

Too goddamn right.

scribbles from a Polari Writing Workshop – on happiness, anger, change, and love

 

Today I had an opportunity to speak out some creative writing jottings in a fun and rather fantabulosa workshop run by Polari literary salon hosts Paul Burston and VG Lee, with a bunch of West Midlands aspiring writers. I stumbled through reading aloud, to the background of a clanging radiator, and in the setting of the Birmingham Lesbian And Gay Centre cafe/kitchen. Here are some of the scribblings, though none have reached a status of a ‘work in progress’. Just exercises on themes. Don’t judge me.

happiness

Skippy* came again last night. It’s the first time I saw her eating the biscuits I put out. She appeared bang on midnight, like Cinderella running home from the ball.Our eyes met, and she half scowled, half grinned. I never know with her. The fireworks have made her all skittish and flighty.

Then the alarms went off. Was that you, mischievous Skippy? And then you were gone.

The alarms were still going off when I left this morning, and you presumably lay dreaming with the biscuits heavy in your belly.

Anger

So I was expecting that this wouldn’t be a problem, turning up here, and then I came across you and your standoffishness and snotty insensitive attitude. It’s a routine medical procedure, and you seem surprised that I didn’t carry round the make and model of my heart valve.. “Isn’t that in my medical records?” I ask, as politely as I can. “If it was me, I’d want to know what was in my body.” It’s not you, and you’ve no idea what I’ve been through. I feel told off and I only turned up for a bloody MRI.

And then I get told the scan won’t happen because you don’t have the details. THEY’RE IN MY RECORDS! just …. have a look. Or ring the Cardiology Unit. I’LL DO IT FOR YOU.

I get my coat, and I’m off. Fuck you very much. FUCK YOU VERY MUCH!

And then the anger quietens, and I begin forming plans, and complaints, and ways forward. And I thank you, you bastard. Because I survived my surgery to spite bastards like you.

A moment of change

London. You big, scary, beautiful, exciting tart. I’ve run away from you every time before. I’ve felt the panic, and my head was swimming with noise and chatter, and I became small and ran away.

But tonight, it’s a New Year. There are lights and crowds and a friend walking beside me. And I can see your lifeblood, that river, and all of a sudden it sparkles with adventure and promise.

I’m no longer scared. I’m going to embrace you, for all your largesse and danger and pigeons and tubes and cockerney villains, and all those people I know here, and all those people I may get to know here.

Hello, London.

Love

It’s soppy and dirty and infectious and sudden and hard and forever and gone in the blink of an eye.It’s me and you and them and him.

It’s Saturday night and Monday morning, births,deaths and marriages, the in-laws and the out-laws.

It’s words and songs and films and books and plays.

It’s murder and hate and war and unfair. It will kill you and it will save you. Protect me from its cruel deceit, and give me more, more, more.

It’s hard to put into words.

 

*Skippy is my local neighbourhood fox. This was her first public appearance.

I was lucky to catch Polari on tour. Troll along to their website to find out more.

For more on Cinderella and polari, varda my previous blog