A long time dying

This is the second blog post with something about dying in the title. I don’t want to do it and although one day I’m obviously not going to get out of it, that isn’t today or any day I’ve got planned. No thanks to the GPs at Leiston surgery in Suffolk, who felt that if I only bucked up and stopped moping about dying they could get on with whatever else it was they were doing when they couldn’t be arsed to give me a blood test.

If they had it would have found something I thought I had, on the basis of no evidence other than a word in my head since I was fourteen. Thrombosis. A blood clot. Mine was a rare one, in the iliac vein.

The iliac vein is a big one. It goes up your left leg and crosses over your spine, just about at the back of your belly button. Your femoral artery crosses over it in front. If you fly for more than an hour you ought to read the next bit carefully.

When I was in the womb my iliac vein grew curled around my femoral artery. When I got on an airplane and we went up through the clouds my artery expanded, as arteries do. Hugely. I’ve seen it on close circuit TV. I don’t recommend this and nor does any doctor I ever met. It gives you nightmares for a week. But I didn’t know that then. Just the way I didn’t know my own blood in my artery was crimping my iliac vein tight shut against my spine.

When blood stops flowing it clots. Mine clots fast. Cuts that other people have for a while disappear on me. A couple of seconds of pressure on a cut finger on me and it stops bleeding. Inside me, a big blood clot grew. A deep vein thrombosis.

These aren’t fun. Apart from messing you up when they’re stopped, slowing your circulation right down, the much more dramatic danger starts if they begin to move. Veins bring blood back to the heart, via the lungs. If you get a lump of blood stuffed into your lung, just like a bullet, by the time it’s stopped ripping things up you can be unhappily drowning in your own blood.

If it goes through your lung to your heart the fun just multiplies. The ‘Out” side of your heart has smaller holes than the “In” side. Your blood clot will go through your heart and jam in the exit holes, blocking the artery. Your heart is only designed to do one thing though and that’s pump. Which it will keep on doing until you die. Unfortunately, if your artery is blocked that might not be a very long time coming, because as any Mech. Eng. knows, fluid doesn’t compress. Your heart will keep pumping blood but there won’t be anywhere for it to go. Until it rips holes in your heart, after which it will go everywhere, unlike you.

But that might not happen. Your travelling thrombosis might slide right through your heart, through the artery and go on up into your brain. If you think you had problems before then you didn’t know what a problem really was. With the other stuff you die. Quite painfully and hopelessly, true, but at least quite quickly and nothing much else happens to you. A blocked artery in your brain though, that’s a whole new barrel of evil kittens.

I didn’t want a stroke. I didn’t want to have to learn how to eat with a spoon or shout abuse at the sound of my own name or have someone clean up after me more than our paid cleaner already did when she didn’t skive out of cleaning by standing very, very close to me and smiling a lot while she talked to me for two hours, an arrangement which suited us both at the time.

I didn’t want any of this. And I didn’t want to go on living the life I remembered my mother’s family living, or several of the older males anyway, sat in chairs inside in summer, sleeveless jumpers on, next to a roaring coal fire. Eleven years ago this year I knew exactly how they felt. They got fat and blocky because every time they moved their joints hurt and because they didn’t move their circulation got worse and they got fatter. And colder. And on, more and more miserably, uncomprehendingly on. I thought it was normal. I thought that’s what happens when you get older. When you have a congenital medical condition, it is. They didn’t

I thought it was normal. I thought that’s what happens when you get older. When you have a congenital medical condition, it is. They didn’t know what it was before they died uncomfortably. I do. And I find it very, very hard to forgive a GP surgery that took three years of my life because they simply couldn’t be bothered to do a blood test.




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When I was dying

I have to credit the amazing-notwithstanding-that-it’s-true title to a friend. She had pneumonia and because she smoked and I think because a lot of different reasons, she thought she had something else. It didn’t matter. It didn’t hurt. There was just no energy. Just every day the light burned a little lower.

I had it once, about a year and a half ago. I can’t remember anything much of that time, apart from being cold and having no energy and the light seemed strange all the time. Yellow. I wrote an entire screenplay in two weeks, the most productive two weeks I’ve ever had, despite that I was ill.

That wasn’t the time I was dying. That was eleven years ago this January past. The fact that I didn’t die had nothing to do with the incompetence, penny pinching and venality of the GPs at Leiston surgery in Suffolk and everything to do with the genius of my surgeons at Ispwich General, which isn’t a phrase I thought I’d ever be using.

I knew something was wrong. I felt old and cold and slow all the time. My joints hurt and there was something wrong with my feet. For three whole years it got worse, until I was wearing a sweater deep into the summer and two sweaters and the heating on at my desk in September. I just thought it was what happened as you got older. The vomiting was unusual, I thought. Every so often, maybe every three or five or seven weeks or so, I’d be hit with a pain inside me so huge that it dropped me to my knees vomiting. Ten minutes later I was fine. Shaken, but fine and just the little pool of vomit to remind me it actually happened. I thought for a while I might be losing my mind. It made no sense.

I went to the doctor. The word thrombosis had been going through my head for years and I don’t know why to this day. Nobody in my family had ever had one, to my knowledge. I was just over forty. I was suddenly flying long-haul quite a bit, but I had my stupid flight socks and drank water and did all the exercises you’re told to. And still I’d wake up five miles high and know I was dying. A flight from Miami to Limassol via London in Business Class was one of the worst of my life. No amount of free champagne and luxury bedding got rid of the feeling that the sand was running out and most of it was already gone.

The first doctor felt my calves, because in Suffolk that’s apparently how you look for a thrombosis. He didn’t find one but said sometimes doctors never find out what’s wrong with people. Next please.

I tried another doctor after he suddenly retired with a mental illness. This one was a female army doctor. Nothing wrong with you if you can cycle twenty miles, I was told. Buck up.

But I didn’t. The next GP decided to test for testicular cancer. It’s the fashion, apparently. If you’re under 25 anyway. And the doctor gets a little sub for testing for it. Flattering though it was to be mistaken for a slip of a lad albeit one with wonky balls, that still didn’t explain the cold, the joint pain, the vomiting. Who cares? Next please.

By the third December I thought my life had gone on quite long enough if it was going to go on like this. I remember cycling out on an errand and taking a short cut back across a field. I wasn’t sure where I was exactly, the light was fading, my feet were soaked and cold but then they were always cold anyway, but my ankles hurt too and I did not want any more of this. I stopped in the middle of the field for a while, but moved on again. I didn’t want to stay in the field. I didn’t want to be anywhere.

A few days later we went to Portugal. It was nothing. I was cold, sick, hurting and felt alone, the way I felt almost all of that time, which was hard on the person who was there with me throughout. When we got back I drove us to Wales to stay in a cottage with relatives. I recall the drive through the dark. I remember walking on a wet beach. I remember driving back and being dropped to my knees with pain tearing me apart in a car park, somewhere I will never see again. And as always, ten minutes later the pain had gone. Just the memory of it stayed. And the pool of vomit on the ground.

A few days after we got back the nightmares started. I got practically no rest for three nights. The fourth night I woke from a nightmare to go to the bathroom and found my left leg hurt incredibly as soon as it touched the floor. I thought I must have been lying oddly. I thought it would be ok.

When I woke in the morning it still hurt. More. My left leg was about a third bigger than my right leg and the colour of a raspberry. My partner called the doctor, the same doctor who had been insisting there was nothing wrong and it was probably all in my head. Even he had to admit there was a problem now.

I went to hospital by taxi because it was quicker than getting an ambulance out to me in the remote corner of the world I live in. The boy doctor in Casualty was scared witless. He arranged a scan immediately, the thing I’d been asking my rubbish GPs for, because I thought I had DVT – Deep Vein Thrombosis. The boy doctor told me my situation was, as he put it quietly, ‘grave.’ I had been telling his colleagues that for three years.

There was a simple blood test that diagnosed DVT at the time. It cost 80p to administer, but the reason Leiston surgery said they didn’t want to use it was because it sometimes gave false positives. In other words, it told some people they had DVT when they didn’t. If that happened they’d have an ultrasound scan, the kind I was having now.

It turned out I didn’t have a DVT. I had either three Guinness Book of Records DVTs or five massive DVTs. Either way they couldn’t really work out how I wasn’t dead. I didn’t say I’d been there and got the T-shirt. It just felt like that anyway.

I was lucky to find a brilliant surgeon on my ward who gave me a choice: join my experiment or go on Warfarin/Couperin for the rest of your life. Which he said would probably be about ten years because after that on Warfarin you’re quite likely to uncontrollably haemorrhage one day. No choice.

The tale of how I got stented can wait for another day.  It didn’t hurt then and unless I get really tired, or get a bad cold, or both, as now, it doesn’t hurt at all. When I have a cold and get tired it hurts in a way painkillers won’t even touch. But at least I’m not dying now. Although, like my friend, I remember when I was.

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The lost time

I nearly died once. Actually, that’s not true. I nearly died quite a few times. The time I crashed a motorcycle, the time I walked into the middle of an Israeli Defence Forces ambush – and don’t even start me on the bullshit behind that name – or the time I jumped onto some railway tracks to rescue someone. Or the more fundamentally stupid time I jumped onto Tube tracks to rescue my hat. Or the time a friend and I got a lift in what we still call the Blue Mazda Truck, whose driver steered up Limpley Stoke hill st 70mph, steering with his knees while he rolled a cigarette, laughing to himself.

Or the time I actually saw a bullet ricocheting towards me and somehow in that slowtime of big accidents skewing how time goes had the time to reason that if I could see it then it was heading toward me and moved and heard it spin through the air by my ear. Ok, that one probably wouldn’t have killed me. It probably wouldn’t have done my eye much good either.

Stuff, you know? Stuff. Everyone has stuff. It’s what you have.

The time I nearly died for four years I was reminded about this week. Someone I sort of know a bit on Facebook (as in we’ve PM chatted but not met) broke a leg in a minor accident. All well. She didn’t fall outside and get left in the snow or drowned in the floods or anything like that. She posted pictures of her cast and what a bore and never mind.

The next thing she knew was the elephant sitting on her chest. Or that’s how she described pulmonary thrombosis, the result of a deep vein thrombosis springing itself loose and going on a wander around your body. The “get well soon”s and “have a glass of wine and sit down” didn’t seem to cover it.

Having a glass of wine is good way of killing yourself if you’re on warfarin, probably the most common emergency anti-coagulant. Except it’s not. A good way of killing yourself would involve things being quick and painless and clean, rather than the long-term cold and pain and messily massive haemorrhaging that screwing-up with your warfarin dose usually brings.

I knew about deep vein thromboses because I had five of them. They took four years out of my life thanks to a series of doctors at Leiston surgery in Suffolk who refused point blank to do a blood test that would have cost about 80p, let alone refer me for a scan. Which would have told them exactly what I told them: I was doing a lot of long haul flights. I’d had the word thrombosis in my head since I was fourteen. I don’t know why. Nobody in my family had had one.

I kept getting sudden skewering pain that dropped me to my knees and five minutes later I was fine. Except I wasn’t. For some reason I couldn’t fathom I’d often, or if not often then regularly vomit for no reason I could see, but associated with the stabbing pain attacks. I felt cold all the time. My pelvis ached and I didn’t want to move. I felt colder and older and slower and sadder, feeling that I was dying. For the simple reason that I was.

DVT is massively serious. Your blood stops flowing. It clots because it’s not flowing. That’s bad enough. If the clot breaks away from where it formed it goes first to your lungs, where apart from being excruciatingly painful it can kill you. If it moves on from there it will go to your heart. Quite often it goes through your heart but gets stuck the other side, so your heart will be happily and very soon unhappily pumping blood into a blocked artery until it literally bursts or gives up wasting its time. If that doesn’t happen your clot will continue its way to your brain and block a blood vessel there, which means if you survive that you might have to learn how to talk again and eat with a plastic spoon. You might want to have a think about whether you actually do want to survive and do all that again. And leave some written instructions for your next of kin, somewhere they can find it in a hurry.

There is nothing good about DVT. In the same way there is nothing good about a Suffolk health service which refuses to even acknowledge DVT as an issue. It should be obvious to anyone that someone with a broken leg is a major DVT risk candidate. In France they’d get an anti-coagulant jab as a precaution. But not here. That would cost about £2 a day. Far cheaper to wait until you have a proper bill for treating a pulmonary embolism. Or the person just quietly dies and stops bothering the doctor, the way the government and some clinicians would apparently prefer.

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When I was dying

It’s ok, I’m not any more. It’s just a cold. But the not-all-thereness, the distanced wooliness, the feeling that I-could-physically-but-I’m-just-so-very-tired, the feeling of slowly leaving something I’ve got now that I’ve got what is obvious even to me is nothing more than a cold and a slew of self-manufactured neuro-toxins sloshing around inside me as my body tries to find somewhere to put the dead cells that fell in the Great War against some crappy cold virus.

I get about one cold a year these days. I used to get them a lot when I was a kid. I used to ask myself what the point of cold viruses was, wondering if I died the virus would die and so wondering what the point of it was. Luckily for my first foray into existentialism I didn’t know the cold virus would probably be fine thanks, longer than my cooling corpse would, anyway. I’m not sure these colds weren’t something else, some manifestation of needing to be noticed, but whatever they were, that wet-hankied, sore-nosed, always cold condensation-on-the-car-windows in a grey West Country car park while the wind sheared through my rubbish Co-op parka if I stepped outside is one of the primary memories of my childhood. I don’t miss not having colds at all. I don’t much miss being a kid, either.

I got this one because I was over-tired and in the company of people who didn’t know what a handkerchief was. All day one day I had pains all the way up the back of my legs, into my waist, for no reason I could work out. Now just the remains of the cough, the watering eyes and the terrible distance between me and everything else.

It was like that when I was dying. I don’t know when it started. In the womb, maybe, or at least the stage was set there, as it always is. My iliac vein curled around my femoral artery, in front of my spine before I was born. When I went on long-distance airplanes, as I did from the age of nineteen, and again when I was twenty-four, then again, then now and again on holidays, then a lot in my early forties, the air pressure allowed the artery to expand to about five times its normal size. I know. I can make it do it. I’ve watched it on a monitor in the ultimate real-time bio-feedback experiment my surgeon made me do.

The vein was clamped against my spine and because blood clots when it isn’t flowing, that’s what happened. I had at least five deep-vein thromboses, or possibly three Guinness Book of Records ones. Nobody is really sure, nor when exactly they happened. All but the first were preventable. The fact that they took four years off my life, drudging through at a distance, the colours of everything fading, feeling that I was slowly dying for the simple reason that I was, was entirely down to my local doctor’s surgery.

My GP had no idea what was wrong with me. He, then she, then he again tried to find DVT by feeling my leg, found nothing and concluded there was nothing wrong with me. Most of the time there wasn’t. I was cold almost all the time even in summer and I didn’t want to move much. I bought a bicycle and enjoyed going out in the lanes after work, but after the first winter it wasn’t much fun.  I found myself one December in a soaking, freezing field I couldn’t find my way out of, my feet soaked, my leg aching in a way I couldn’t understand and no hope of ever being anywhere else but cold and hurting under a grey sky. Occasionally I’d simply double up with pain, dropped to my knees vomiting. I vomited unpredictably, on three continents, leaving a sour trail of hopelessness wherever my ticket took me. Ten minutes later there would be no pain at all. I wondered if I was losing my mind. There were no lumps, no skin discolouration, nothing. I was just dying.

I’d had a relationship go wrong in a way that was entirely predictable it would. I thought I was just sad about that and this was what it was like getting older. You move about less. You feel the cold. Everybody in my family did.

From here, everything about this screams how obvious it was what was wrong with me. My childhood memories are full of blocky men in armchairs who it hurt to move, coal-fires blazing in mid-summer, living-rooms heated almost to suffocation-point. Every one of them I think now had exactly the same thing I did, iliac DVT, congenitally. They all wore fixed smiles. They dealt with it differently to me.

I didn’t die, no thanks to my local doctor (and Leiston Surgery, please feel free to take a bow at any time). But it was odd and interesting to hear a friend use exactly the same phrase about the time she had pneumonia and thought she had something else: “When I was dying….”

We neither of us said it for sympathy or a hug or maybe, if nobody minds, you know, something else maybe. Just a fact, along with the odd realisation that this was real, that we had both had the same experience, that we’d both known what was going to happen and the fact that it didn’t wasn’t really much to do with us at all. But when we were dying somehow we didn’t. Something slipped away, but it wasn’t us. Some time again it would be, we both knew that. But not yet awhile. Not yet. It’s just a cold, this time.


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