Now Was Not Like That Then

outrage impertinent decorum growing up positive

Once upon a time, in a universe far away, I landed my first writing contract. It was all terribly exciting. Getting a real book into print, ad being commissioned. I was a post-grad student terribly excited by ‘gay theatre’ and ‘gay drama’,  the new ‘queer politics’ that had emerged in the 1990s and which seemed to inhabit different areas of my life – politics, friendships, relationships, culture. I was in the process of trying to make sense of all this when Cassell started its own pioneering ‘queer studies’ publications list, and I was invited to be in the first round of authors to contribute. My research enthusiastically – and probably, naively – coalseced around an idea of ‘gay theaterical manoeuvres’ – the notion that sexual identities are created through our body, our language, and the spaces we inhabit/invade. A clumsy, but idealistic way, to try and marry some of my lived experience as a young queer writer and activist following a backlash from the AIDS crisis, and new(re-emerging) prejudices and homophobia. No equal age of consent, no equal marriage, no gays in the military, no ‘promotion’ of homosexuality.

What strides, what leaps there have been since then. And, for me, that book – Impertinent Decorum – was published in 1990, and I was then  offfered a second commission, for a collection of oral histories on the theme of ‘Young people and HIV/AIDS ‘- an area I was doing work in as a dramatist, activist, and writer.  I got the opporunity to write another book, and to sit and listen to many inspiring life stories. ‘It’s like talking to a counsellor’, one of them told me. Which is what I also eventually became.

My third commission from the same supportive editor/publisher was to document the rise and history of the direct action group we both belonged to, OutRage! I had lots of chats, listened to a whole load of gosssip and rarguments, from people I barely knew and people I knew well – ‘including ‘the busiest gay man in London’. Even then, we found we were looking back at a world that was changing and disappearing, hence the title of my introduction to the book ‘Now Was Not Like That Then’, after a comment from a vociferous anti-gay contributor on a television talk show. Much of the time we were being vindicated and ‘str8’ society was coming round to a rather more liberal  (or assimiliationist) vision of ‘equality’. It wasn’t exactly the ‘Queer’ agenda we’d started off with, but if that got the police to investigate homophobic murders rather than hanging round toilets trying to entrap gay mean, it seemed an imporvement. OutRage! was published in 1998, at a time when the organisation itself was changing and diminshing, but before the real impact of its arguments and campaigns saw fruition. Many will argue that OutRage’s direct action was counter-productive and it was the more measured politicking of groups like Stonewall that were responsible for the change.Wotevs.

It was kind of exhausting  wirting non-fiction about things I felt so strongly about. Writing the books was a way for me to re-imagine, but also to record, what was happening around me. After those books, I took to greater flights of fancy with queerotica and sci-fi. But it was glorious to have a commision, and to have space, simply to write,with a supportive publisher backing me.

As with gay rights, publishing has moved on and Now Was Not Like That Then. My publisher was acquired by a much larger publisher, so I find myself strangely housed within the Giant Halls of Bloomsbury, who have recently confirmed that they will be e-publishing those early books. E-publishing! My edior and I talked about such a thing in the 1990s and we both thought there might be something in it, but at the time the publishers themselves weren’t so convinced. All that business about licenses and formats seemed too complicated. So I continued to take a train down to That There London and the gleaming and daunting publishing houses, with a big fat print-out opf my latest 200 page book, Ofcourse, I LOVED going down to the Big City with a physical print-out of my latest  book. It was so …. heavy and impressive. And, even better, to get the print copies or proof-copies through the pose, so I could hold MY BOOK in my hands. Mmm, Precious ….

I still write. Mostly, these now get e-published in the first instance. Which is equally exciting, for me, but it’s rarer to go to a bookshop in Vancouver or wherever I travel and find one of my books on the shelf. But, for me, those first three titles remind me of the many thoughts, conversations, arguments and struggles of a young writer. I’m welcoming their return, and hope I can forgive myself the mistakes which will be so evident to me today.

My first published words were It’s Cool To Be An Artichoke which have also been quoted in the blog. Recently, professional footballer  Thomas Hitzlsperger and Olympian Tom Daley have come out. Moves are foot for equal marriage. Now was not like that then. Later today, I have an appointment with a space station. Funny where your writing and (re) imagination can take you …

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It’s only a little prick, sir …!

One of the side effects of heart surgery and having a loud, mechanical valve thumping away in your chest,  is having to become a long term user of rat poison/warfarin. As I’ve written before, it deprives me terribly of cranberry juice,  and  leaves me a ‘responsible’ drinker (with my reputation!). The medication is aimed at preventing nasty blood clots, thinning my blood to an INR range (no idea what it means) of 2-3. According to my dentist, they are now looking to replace warfarin but all alternative treatments are ‘too expensive’. It needs regular monitoring, which has meant frequent and inconvenient trips to the hospital. The Haematology Unit there is able to conduct a short fingerprick test, which is less painful and less complicated than a full blood test which becomes necessary if you opt to go anywhere else. I’ve had so many blood tests recently, my veins have become quite difficult to access and the warfarin itself means I bleed like a stuck pig. Dignity, always dignity.

So it seemed like a great idea when the haematology nurse suggested ‘investing’ in a home test fingerprint kit. No more hospital visits. No more needles. Much as I loathe the notion of an NHS becoming privatised – which is what a scheme such as thiscould become the start of – I am willing to invest in my own health. So the manufacturers, Roche, offer a home test machoine for the *bargain* price of £299 – at a reduction of £100 – which can be paid for in 24 interest free monthly installments. Now, that ends up being cheaper than having to pay parking fees or bus costs over the same period, so it is becomes appealing, particularly for a life-long ‘condition’. There is a catch – your GP has to agree to prescribe the testing strips on the NHS, otherwise you wind up having to pay 6o odd quid for those also.

That doesn’t sound a problem, right? Quick chat with GP, strips on prescription, I can order the machine and life becomes so much simpler. But, gentle reader, what a world of fantasy you inhabit! Initially, I was told by GP reception that I have to get the strips from the Haematology ward. After a call to them, I’m assured that isn’t the case and it’s the GP who prescribes them, but am urged to contact the maufacturer Roche for all the details. I speak to a helpful lady there who tells me it’s a clinical decision by the GP, but that most of them ‘see the benefits (which sounds a little Orwellian). She kindly sends me a fancy-pants glossy brochure and expensive dvd advertising the testing kit, delivered in a box far, far too big for its contents. So I go back to the GP, who’s very helpful with everything else (I went bcause my scar had started bleeding and I needed some magic antibiotics) but on this matter she’s been told by the Practice she ca’t prescribe them without ‘Something from the Haematology Department. It’s not, I’m told, just a problem with the surgery – perish the thought! – but a ‘Coventry wide problem’. ‘Is that noise your heart?’ she asks , drawing attention to  my Thumping Mechanical Valve. ‘I thought it was a clock’. Tick. Tock.

Meanwhile, my erstwhile cousin makes enquiries at her hospital, and it’s clear this shouldn’t be a problem. I’ve now got my gander up (which you wouldn’t want to see. It’s like a camp Incredible Hulk) so decide I’ll take the fight straight to the Dark Tower itself and write to the newfangled NHS commisioning board/group/body, the Clinical Commissioning Group (CCG):

 I am a long term warfarin patient and was recently given details by Walsgrave Haematology Unit of the option to buy a home testing kit. My GP has said coventry surgeries are ‘not allowed’ to prescribe XS test strips unless they have a letter from haematology instructing them to do so. I have contacted both the haematology dept and the manufacturer, Roche, who have said it is a clinical GP decision. In addition, I understand that you have allocated a budget to help facilitate this Both my GP and haematology nurse consider home testing useful, both because I am a long term warfarin patient, and because fingerprick testing is better for me than blood collection through a needle, which can be more problemmatic for my veins. I am frustrated that I am not being supported in an exciting and cost/time effective initiative which will bring me huge benefits, and which I am willing to self-fund through investment in the self-monitoring Meter. Additionally, I see benefits in this freeing up NHS testing resources.Can you clarify how I can access these test strips on prescription and what your guidelines on this are?

I’m convinced this will be lost in the bureaucracy of the NHS but lo! am pleasantly surprised a couple of days later to receive a helpful and clear reply:

 

Dear XX

I have been asked to respond to your query regarding coaguchek testing strips. Firstly apologies for any delay but this message has only just come through to the CCG.

Coaguchek XS strips are now allowed in Coventry on GP prescription but, with agreement with the haematologists, who wrote the protocols, only when the GP is supplied the guarantees that the patient has received the appropriate training and that the machine is going to be regularly maintained. We have to insist on this as we must ensure that testing is appropriate, as getting the dose wrong can result in significant patient harm, and that the test results are accurate at all times.

 There should be no reason why your specialist should not have provided this and I will contact them to ensure this. In the meantime please ask your specialist again.

 I apologise for any delays.

 Kind regards

XX

Which, aside from the odious ‘kind regards’ signature, settles things ONCE AND FOR ALL.

I have appointments with both my GP and the Haematology Unit on Thursday. So we’ll see how they respond in the light of my Flaming Torch of Knowledge…..but for the moment, I’m feeling heard and vindicated. And wondering what The Training they refer to might be. I hope it doesn’t involve role-playing, or Name Games. Or some sort of blood testing exam. With any luck, they’ll just give me another copy of that swanky brochure and expensive dvd…

 

links:

ACSMA is the Anti-Coagulation Self-Monitoring Alliance and campaigns to support self-testing, and for home slef testing to be provided on he NHS. It lists the benefits for individuals and theNHS on its website, and suggests how you might help.

#amazeballs – Never Mind The Bo##ocks

It’s a year since I had all that unfortunate business in the ‘downstairs department.’

Originally, I went for a check up to distract me from waiting around for heart surgery. ‘It’ll re-assure me’, I thought, after thinking ‘it doesn’t quite feel right’ for a while, although I already knew I had a torte (undescended testicle) and that seemed OK. I’d been reassured several times I was still fertile and could have children (leaving me feeling weirdly, and rampantly, heterosexual).
The Doctor – a young and very polite trainee – was terribly, terribly embarrassed by the whole thing. I’d gone with a list of things including repeat prescriptions, request for flu jab, and finaly thecheck up. Clearly, doctors need to feel another man’s genitalia a lot more than they do in training.He waited until the very end of the consulation befoe donning blue latex gloves ‘for that other thing you mentioned’ and asked me if I wanted a chaperone, which sounded quite glamorous. He fiddled around for a while and then went out of the room and came back with a more experienced colleague who introduced himself with his hands round my nuts saying ‘this is an unusual way for me to introduce myself’. ‘Not for me’, I nearly quipped. He then asked if I could get an erection. ‘What, right now?!’ I thought before letting him know that I had no problems performing thank you very much. They sent me for an ultrasound’ ‘just to be sure’.
The appointment came for the day I wa due to be ‘ringholder’ for a friend’s wedding vows renewal. They cover you in KY jellyfor the ultrasound, so I figured someone could be in for a fun night later. We know what straight men are like at weddings.

Eventually I was given an emergency appointment with my GP – which I knew was a bad omen as you can never get an appointment that quick usually. He told me that to expect things like this ands the heart surgery ‘at my age’ but that everything gets better when you’re in your fifties. At one point he paused the consultation as another patient wanted to know if they’d left their bag in his room. He shook my hand, wished me luck, and told me he hadn’t had any of his patients die from this. Which was comforting.

I was offered surgery pretty quickly, and as the Macmillan nurse felt my crown jewels, I learned she knew my mother – formerly also a Macmillan Nurse. Not the most comfortable of conversations to have whilst undergoing that sort of exam. ‘We never did physical examinations’ my mother told me later, leaving me unsure if I’d been molested or not. They mark which testicle to lop off with a big blue pen, and asked several times ‘which one?’ Fortunately, I kept giving the same answer, and did the marking myself, commenting the right one was always my least favourite anyway. I was offered a ‘replacement’ but, disappointingly, that didn’t include my request for a glitterball (bit or razmatazz, I thought) or even a dongle – ‘That could be really useful, I thought, like you do when you see a pineapple corer or other kitchen item you know you’ll never use. Like my pasta making machine.

The oncologist offered me a single course of chemotherapy to reduce the (slim) chance of a recurrence. That wasn’t pleasant, but I’m glad I did it, even if I ended up like a pin cushion following the pre-treatment blood tests they carry out (I counted 20 injection points where they tried to get blood from). My brother accompanied me, and fainted in the corridor.

I was in and out of hospital within a day, and told friends I was walking lop-sided after the operation. The outlook for this thing is very good, apparently, apart from the annual facial horrors of the well-meaning fun ‘charity fundraisier’ Movember, where guys can show support for testicular and prostate cancer by wearing the most ludicrous and terrifying facial hair furniture. Why not just grab a mate’s gonads for a good feel and check-up instead? At the hospital today, I saw a man attempting suicide, trying to jump from the top of the car park. He was by the entrance where I left after the surgery – ironically, next to the ‘mother and baby’ ward. He was prevented from jumping by 3 or 4 burly, but caring, security guards and paramedics. Just another reminder of how difficult, painful and fragile life really is.

For more information, try:
www.everyman-campaign.org

Macmillan Cancer Support