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. 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 fet were soaked and cold and my ankles hurt 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.

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 choce: 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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