Now we are Four

IMG_20131019_2222124 years ago today. I got up, went to the gym for an hour and then went shopping to Marks & Spinster with my folks, where we stopped to have a pot of tea and an apple turnover. ‘What a beautiful day’ I thought.
Little did I know that an hour or so later my heart would traumatically tear away from its root, contacting emergency services as I struggled to unlock my apartment’s door for the ambulance and my parents to get in.
2 days later I woke after 2 emergency heart operations, having lost several pints of blood and being put on ice, hallucinating about Chinese nurses and caretakers and hippopotamus and Aladdin.
The years between have been full of cancer scares, cameras up/in every orifice, depression, PTSD, the loss of 2 jobs, a mini stroke, loss of field vision, losing my driving licence because of health issues, severe anaemia, a crash with a double decker bus ……..

I began blogging a little before this. In fact, it was in anticipation of planned heart surgery. I’d been planning a holi-holiday to Peru (Macchu Picchu, Lake Titicaca, Nazca Lines – all terribly exciting) and because so much of the adventure was at high altitude, I decided to check in with my Cardiologist. I watched as her face dropped on examination, and she rushed me in for an echo-cardiogram ‘just to check’. I waited to see her for the results as the ward emptied and we were the only two Left Standing.  It wasn’t good. I had an underlying heart condition, which had worsened and required surgery within the next 5 years – she would need further tests and a referral to a surgeon in order to determine when.

The trip to Peru was cancelled – the first of many holidays I’ve had to cancel since.  I was never all that keen on Macchu Picchu if I’m being honest – I don’t really like edges, as I get a bit drawn to them and a little too intrigued about what happens if I go over the edge. In the end, my heart decided it couldn;t really wait for the NHS and so it broke early and impetuously.

In between all that, I had the small matter of my testicular cancer diagnosis the previous year before my emergency incarceration. I know – it never rains but it pours, right?I had some counselling as I was going through it all – the orchidectomy, the chemotherapy. the waiting for surgery. Which is what led me to the blogging. I found it a cheaper way to process and capture some thoughts and feelings – so, if you’re reading this, you’re kinda my cheap therapist. But I don’t know if you’re qualified or not. If you are, I’ve got a bargain. If not, just don’t go telling my secrets to people, because you’re bound by confidentiality, right?
Today I was at the gym. There were 2 crutches left by the side of my treadmill, and I saw a woman struggling to climb on to a Stepper Machine. I recognised the determination on her face, and the struggle she was experiencing.
4 years have passed. I’m not currently employed, and it’s not always easy.

Step by step ….

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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.

Betty Bones And The Mystery Of The Phantom Clipper Nicker

even at  an early age Betty Bones knew she Wanted To Be Evil...

Betty Bones harboured many secrets…

Yesterday, I met up with an old school friend. We caught up on 20 years worth of love, loss,  career, family  and friends. He was warm, charming, friendly, happy and looking very well. I’ve missed him, and I longed for my old school days and what seemed simpler times. School reunions can be a bit of a minefield – memories are tricky magicians, and people change through circumstances, relationships, realisations, life’s little intricacies. Thankfully,  neither of was too different from the couple of classmates from a Catholic boarding school we both knew 20+ years ago.  We were able to step back.

My nickname at school was Betty Bones, given to me by my best friend Mary Harlot. We were camp and bitchy and dramatic, protective and ‘sisterly’. Mary died very suddeny  in 1999 and I’ve missed him ever since. I was explaining Laurie Anderson‘s description of grief or loss as a ‘library being burnt down’  one of the truest descriptions I know – a whole load of memories, connections, networks and relationships become ashes,suddenly gone. And for a couple of hours, in the company of an old friend, I was Betty Bones again, and Mary was alive with us  too.

I had a great time at school,  full of scandal and gossip – Mary and I used to write a weekly ‘Scandal Top Ten’ of rumours, gossip and half true events.The truth hurts but is always respected  he would say. Recently,  another  friend and school colleague, Simon Mason, has written a compelling and harrowing, brutal account of abuse and subsequent drug addiction, Too Far, Too High, Too Soon. He sent me  a picture of us both in a school play. where I was surprisingly butch as Huckleberry Finn.  My first line was Hello yourself, and see how you like it.  School  wasn’t as happy and sparkly, though,   for other people, and I’ve since heard several stories of abuse and unhappiness while I stomped, minced and breezed my way through.

I’d moved there after a traumatic and difficult first year in the local comprehensive, inhabited by bullies and a cloud of despondency. I started off a bright, creative student and ended up being a recalcitrant, disillusioned and unhappy child forcing my parents to move me. It’s not that it was necessarily a bad school, but it  was too big for me, and I got lost and frightened in its inability to see me. Although I was  never bullied (‘you would have eviscerated them’, my friend told me over tea), it was painful watching the effects on others.

In my first term at New School, a History teacher suggested we write a creative story after his history lesson. I seized the chance, he gave me an impossible mark of  10+ and read  my story out to the year. I was suddenly a writer, a weaver of tales, and haven’t stopped writing since. Unwittingly, ‘Humble John’ is  probably responsible for my first historical queerotica novels Hot On The Trail and Legion Of Lust, where I reimagiined history from a queer perspective. Most of what I experienced at school got reimagined by Betty Bones and Mary Harlot. So much so that I’m never quite sure what was real and what wasn’t. Truly,there was murder, and drunken nuns, and beatings, and imposter clergy who were surreptitiously ghosted away one night… some of which I might write about in later blogs (spoilers!)

One year, there were a spate of incidents in our library , ruled at that time by Mary Harlot and Betty Bones under the guise of Head Librarians, deciding which pupils would or wouldn’t be ‘allowed’ to take out books. It was an old library in a converted part of a beautiful chapel, with a simple shelving system involving boards held up by metal clips inserted into a metal frame. Like meccano.  Someone discovered that you could remove the clips and prop the shelf above up with a larger book. Unfortunately, if the book was taken away, the whole shelf of books fell down on the unsuspecting reader as onlookers stood by laughing. Thus was born The Phantom Clipper Nicker, fearsomely striking on many, many occasions. Our staff librarian, nicknamed Old Mother Diptheria for no other reason than she was elderly, noticed a reference book in the wrong place and attermpted to remove it, only for a shelf full of books to topple on to her. Help Me, she begged ,from under dusty tomes,  her weak, wizened  old hand was attempting to hold up. Unsuspecting new boys were directed by The Phantom and his/her accomplices to ominous looking tomes, unwaware of the fate that was due to befall them. Bodies In The Library. Rather appropriately, I last saw the library used for a location for the cosy clerical murder mystery series Father Brown   – but there was no sign of The Phantom Clipper Nicker.

When I left my friend, after a couple of hours of tea and gossip, I found myself crying for no apparent reason.  I do that these days. Perhaps it was another ‘Brokeback Moment’, perhaps it was just the events of the last three months catching up with me, perhaps it was 20 years of life being crammed into a couple of hours of tea and gossip.  Or perhaps The Phantom Clipper Nicker had struck once more ….

It’s too big, Jamie….!

sonic

A lot of this blog to date has been accompanying a journey of ill health, a recovery from cancer and heart surgery. Which, strangely, is the easy thing to write about. I just write about how something happened to me ,  how I responded, and maybe I aso have a few stories along the way. And you, gentle reader, become my best friend, my confidante.

So what happens when things go OK, and I’m not relying on bad things happening to me to write about? I had a week without hospital appointments last week – my first in three months, and strangely I panicked. What do you do when you’re not relying on doctors to test your bloods, and your body, to see what’s working and what isn’t ? Strangely, you’re supposed to actually enjoy being healthy. No special professional attention – just get on with it. Enjoy your life. It’s a long time since I’ve been there, so it’s disturbing new territory.

And now for the good news

So, for a start, they rediscovered 9 lost episodes of Doctor Who from the stories Web Of Fear and Enemy Of The World, both starring the remarkable  mishchievous space hobo of a Second Doctor Patrick Troughton, of Whose tenure we have so few episodes but so much to  be thankful for – if that first rejuvenation hadn’t been successful, Doctor Who would have died with William Hartnell. So the re-discovery, accompanied by  tales of derring do and secret deals and danger and threats, is terribly, terribly exciting for a Doctor Who fan like myself. Even if I haven’t rushed to appease the BBC’s commercial interests by immediately downloading episodes from i-tunes. I can (just about) wait for the DVDs to come along…

…because, in other good news  (though this won’t shake down the Twitterverse in the same way) I’ve bought a spanking brand new smart/3d tv, blu ray player and fancy soundbar. So I’m all set up to watch black and white episodes of a 60’s cult science fiction show! And, yes, I do find myself losing the remote but I’ve also got a fancy Sonic Screwdriver Universal remote… how does any of it work?!

I started a film course – watching a film a week with a lecture beforehand on a relevant aspect of the film. So far, none of the films have been much cop really. But it gets me out of the house (and away from hat spanking brand new tv).

You gotta accentuate the positive and that’s challenging after being so cautious, so anxious, for so long. But a recent CT scan for the cancer was clear, my cardiologist has reduced my medication and is very pleased with the recovery and rehabilitation. I can let go a little. Retrain myself to think healthy, tothink about now  rather than what might or might not be in the future, what might or might not have happened in the past. Try it for yourself. You might yet find the equivalent of Doctor Who episodes you thought long lost. And find yourself watching them on a glorious widescreen 3D smart tv with realistic surround sound. Which is, after all, how we get to experience that ole thing called ….life. Related articles

#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

ooo matron, it was just a little stroke

Last week, I was dribbling with a droopy face (according to my mother). Not the sort of thing you want to hear from family on a Sunday morning, and definitely not the look you want. So an ambulance was called, and another day spent in hospital. Fortunately, all the test proved fine. I had a scan (it was like putting your head in a washing machine), which managed to find a brain but nothing sinister.The fear that it might have been a stroke proved groundless, and they also didn’t think it was Bell’s Palsy as there was no sign of infection in my urine sample. The nurse was a bit shocked when I  handed her the sample (in what amounted to a cardboard egg box)  and said ‘It tastes fine!’ Last Monday I had a follow-up appointment at the Transient Ischaemic Attack clinic – and more tests – of course, blood tests (the blood didn’t stop flowing so I left the cubicle looking like something out of a Tarantino movie,  dripping a trail of bloodfrom my arm onto the floor They gave me a neck a neck scan (‘the type of scan you have if you’re pregnant’,the doctor explained, although I was pretty sure that wasn’t the problem and did wonder why they’d scan your neck to see if you’re pregnant anyway)- ‘You have a very good neck,’ said the Doctor. ‘Thank you, it’s one of my best features’ I replied. So, apparently everything is OK, and it’s just One Of Those Things. Which isn’t actually very reassuring as all I heard the Doctor say when he explained it was ‘BLAH BLAH BLAH TIA Stroke BLAH BLAH BLAH arterioscleosis BLAH BLAH BLAH happen any time.’Apparently, my translation isn’t so accurate as he was  explaining there’s nothing to worry about.However, I’m extraordinarily gifted in always being able to find something.

Especially asI wasn’t even aware of anything happening. And he observed that my face was definitely dropping on the left hand side.  I just happen have an asymmetrical face and even when normal look like someone who’s had a stroke. Charming! I feel like Dali’s melting timepiece, The Man In The Iron Mask or Karfel from the Doctor Who episode – Timelash. I just paperto to  find a paper bag to put over my head, or a sinister mask.  Can I get a   SCREAM mask on the NHS? I’d love to see the faces as I walk into hospital wearing that.

In the meantime, I’m on a gym rehab programme. I’m sure it’s not right to have the background music for recovering heart surgery patients to be Queen’s Killer Queen, It seems to give out the wrong message, although all I said to the physiotherapist standing over me with a whip and a taser to make me work HARDER, HARDER, was ‘It’s a bit 70’s, isn’t it?’ He was humming along quite happiy. It shouldn’t bother me as I bring my own ipod, although I always dread what’s going to come on my shuffle,as I either tend to mince along to the handbag anthems, or start singing out loud without realising it. I’ll let you know how a bunch of OAPS react to me belting out ‘I was a Male Stripper In a Go-Go Bar…’

I’m now hoping to stay out of hospital for at least a couple of days. And looking to Work That Body at my next gym session. Apparently, it’s likely to involve weights. I hope nothing else will start drooping as a result. Otherwise I’ll need an enormous paper bag, and possibly a onesie.