Roz Kaveney (rozk) wrote,
Roz Kaveney
rozk

A second instalment...

People have been sufficiently enthusiastic about the chunk of memoir about my surgery that I may as well post the rest of that chapter.

There are a couple of points of clarification I should make even though I mentioned them in comments to the first chunk. The reason why I went to this surgeon was that, of the two surgeons doing reassignment surgery in London on the NHS at the time, he was the one whose gatekeeper shrink was not a crazed sexist. The other, better surgeon - which is a relative description - was the man at Charing Cross, where the shrink was the notorious John Randall, who would probably have refused to see me because I am over six foot tall, and because I worked as a freelance writer and editor instead of having a proper job in an office. He is the man who notoriously postponed the surgery of one of my friends for a year because she 'showed disrespect' by coming to see him wearing jeans.

Seeing Brown, and thus Morgan, was a rational choice where I was taking a gamble in certain areas, and I came up unlucky...But what else could I have done? Certainly my GP of the time agreed with me that I would be safest seeing Brown, because he had had experience of Randall and his mind games.

So, anyway, the first chunk of memoir is here and this is the second chunk


I went back into hospital in the autumn and things seemed to go perfectly well. When they opened me up, they found that the deeper grafts had stayed in place and that they had not closed up on me. They lined the raw patches they had had to peel with strips of skin from my left thigh and there were no more problems with thromboses. I was up and about in a couple of days, and my thigh healed remarkably quickly. Back in a few months for my labia, I thought, and that will be that.

They produced the plastic form again, and gave it to me to keep inside me, washing it in hot salt water twice a day and using lots of KY. And all the different sizes of dilator, too. Gosh, I was thrilled.

The night after I got out of hospital, I had a particularly vigorous sexual dream - given subsequent events in my life, it was perhaps signficant that it involved thin pretty women and long whips. I remember thinking at the time that this was not what my sexual dreams usually involved.

When I woke up next morning, I realized that something had gone a bit wrong - the plastic form had worked its way up past its normal position and was firmly, and stimulatingly, clenched there. Pleasant as this was in some ways, I realized that I couldn't get it out to clean it, or indeed at all, and that I was having a certain amount of difficulty walking.

So I rang Dick Kelham and asked him to give me a lift to the hospital.

'What's up?', he said.
'That is not the right question,' I said. ' And I am not going to tell you what's wrong. It is too embarassing by a significant margin. Let's just say I need to get back to the hospital, and I can't walk very far.'

Dick probably worked it out, more or less, but was as always the soul of tact.

When I got to the hospital, I went up to the ward and found the duty sister. I took her aside, and explained.

In the end, it took two tubes of KY, and three nurses with their arms around each other's waists, to get the damn thing unclenched.

'Nothing wrong with your pelvic floor' a junior doctor said, checking the area for abrasions with a speculum.

After I had been back at work at Chatto for a couple of days, I realized that I was not passing any water at all, and that I had put about six inches on my waist and hips in a day or so.

I left work and got on a bus. I waited around the ward in progressive discomfort for a couple of hours until a registrar could see me. When he did, he announced that I had a bladder infection, and had better be admitted straight away; in the meantime, they would insert a catheter and drain the urine.

A junior doctor came along, inserted a catheter rather brusquely and went off again, leaving me with a young nurse in her first week or so of training. The catheter bag filled and swelled and I was suddenly in the most intense pain I have ever known when not drugged out of feeling; something was deeply wrong deep in the core of me, but my fingers and toes were also on fire. Apparently, when you drain off an over-filled bladder, it is never a good idea to drain it all off at once, because the result is a bladder spasm; the walls of the bladders sproing in and out continuously and it hurts, oh yes!, it hurts.

I spent the next couple of weeks waiting around on antibiotics waiting for the infection to go away and feeling generally very seedy - because I was supposed to be going home from day to day, only a few hard-core people ever got in to visit me, and I was bored out of my mind. Still, I thought, when they let me out and I wandered home on the bus, one more stay, and that will be that.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

I could not help noticing, as the months wore on, that I was in more rather than less pain, particularly when I sat down, and that there was often blood and stinking gunge on my bandages when I changed them and put them in the wash. I took to taking an air cushion with me everywhere, because otherwise I could not bear to sit on anything but the softest of seats.

I went into clinic every few weeks and saw various junior doctors, who glanced at the entry to my vagina and told me that I had a few small ulcers and they could not hurt as much as I said and I should go away and stop bothering them and stop trying to jump the queue for my next lot of surgery.

I took all the painkillers they gave me, and worried that I was really just malingering and getting into a state about nothing. And then I reflected that this was not very intelligent of me, or very principled; I was letting them treat me as if I were deranged and feeble. I was letting them treat me like doctors always treat both transexuals and women if they are allowed to get away with it.

The next time I went to the clinic, I explained at the desk that I was not happy with the care and attention I had received and that I was not prepared to leave until and unless I saw Mr. Morgan himself; I thought something was probably seriously wrong, and I handed in an envelope containing a particularly unpleasant set of dressings from a day or two before.

I waited for several hours, and eventually Morgan turned up; I explained that I was taking ten distalgesic a day simply to function at all. He asked the registrar, who was flustering around being offended that I was being difficult, whether he had examined me. He said that he had - I pointed out that I had consistently told him that the pain was up inside and he had never looked or felt at anything more than an inch from the surface. Morgan got me to take the form out and a quantity of pus and blood came out with it, that stank of stale urine, as my dressings had for the previous week.

Morgan glared at his registrar.

'And this is the minor problem that she is making too much fuss about?' he said, waving the form under the poor man's nose.

Morgan then felt up there himself.

'You've got a fistula,' he said. ' There is a leak from your urethra into your vagina and it has caused chafing and ulceration. I'll admit you back to hospital this evening; we'll need to repair the area.'

He turned to the registrar.

'And you,' he said,' I want to see as little of you as possible. If you can't listen to one of the most articulate patients you are ever going to have, what chance do the rest of them have with you?'

I went to a phone and rang people up - I had come with emergency supplies, some books and my walkman and a nightgown and a toothbrus, but if I was going to be in for a week or two, I needed people to know.

In the event, I was in for about a month while they fiddled and faffed and did examinations under general anaesthetic. A urinary surgeon got called in to help Morgan repair my urethra. No-one ever said that the tear was a long-term consequence of the rather brutal way I had been catheterized six months earlier. I got the impression that the fistula had not come entirely spontaneously, either. By this time, I was heavily conscious that Morgan, nice as he was, was very concerned that nothing incriminating ever get said around me, that one of the reasons why he was being so very nice was that mistakes had been made.

I also started to worry about the state of my brain. By this stage I had had in excess of fifteen general anaesthetics in rather fewer months, and I had started to notice that the events of the previous couple of years had become vague and unimportant. (I still periodically meet people I don't remember who were part of my social world in the early 80s.) I could still turn on Radio Three at random and be able to name most C19 music within a couple of bars; I could still name the kings of England and quote the fights historical from Marathon to Waterloo; I could still remember the plots of bad space operas I had read a decade or two before. Something was wrong nonetheless, I could not help thinking.

So I got a friend to bring in the Penguin Book of Nineteenth Century French Verse, covered the cribs and sight-translated some of the sonnets of Gerard de Nerval into English verse until the worry went away. They weren't especially good translations, but they weren't particularly good sonnets in the first place...

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

The following autumn, we finally got round to fixing my labia. The trouble this time was that the plastic surgery was patching and tweaking flesh and skin that had been patched and tweaked rather a lot of time already, and my body was getting fed up with the whole damn thing. Patches of sores would develop, and then areas of black necrosis would open up in the middle of the sore and everything would start to get unpleasant again, and I would make another trip to theatre, to be whittled on.

They used cortisone creams as they had on occasion before, and they did not seem to be doing any good at all, just stinging where the cream met the sore. Eventually, I wandered up to Brian Morgan when he was sitting thinking in the corridor outside.

By this time, I had stopped calling him Mr. Morgan, because I knew I could get away with first name terms. During my previous stay, Dee, who was also in and out all the time, was back again - she kept closing up and rejecting the plastic form. She was very upset, and I took Morgan on one side one day, and pointed out to him that, since she had been a dancer since the age of eight or so, her abdominal muscles were not going to be like anything he had ever encountered, and that perhaps, just perhaps, and of course I was not a doctor and did not even know if such things were possible, it might be a good idea to get her to rest and to shoot up her abdominal muscles with some sort of relaxant. A day or so later, something of the sort was tried.

So, on my own behalf, I wandered up to Brian Morgan and suggested that maybe, just maybe, we were going at this the wrong way - cortisone clearly wasn't working so maybe we should try something a bit lower tech, like mercurochrome.

So we did, and the sores cleared up in four days.

They even let me go home, on condition that I examined myself twice daily in a mirror and burned out any developing small keloids with silver nitrate - this was probably the grossest single thing I had to do in the course of all this.

++++++++++++++++++++++++++++++++++++++++++++++++++

By now, we were in the home stretch - I was in for the odd extra bit of tinkering with my labia and with my urethra, and every so often I saw the urologist who tended to try and sort things out with the medical equivalent of dynorods. I developed a bad habit of coming out of hospital and going straight out shopping for books and records to make up for the boredom of being inside. When you feel as bad as I felt most of the time, you sometimes use whatever energy you have for things you really want to do, like shopping, rather than rationing yourself carefully. I had a wonderful excuse for not being able to clean up after myself and getting other people to come round and do the heavy lifting.

It was on my last stay - by this time we were up to about twenty-five surgeries and three or four other general anaesthetics - that they gave me an epidural as well as a general. I woke up from the general anaesthetic and could not feel my legs.

I mentioned this -presumably it would wear off in a while.

'Yes,' the recovery room nurse said. 'In a short while.'

Three hours later, it had not worn off and I was just starting to worry, particularly when I realized from a sudden sharp smell that I had no bowel or bladder control at all either. This was the point at which I started to lose my good humour, and panic, and luckily, by the time they had washed me and changed me, my toes started to tingle and I realized that I was panicking about nothing very much in particular.

Except that what we are talking about is that feeling both that something had gone very wrong and that I was helplessly in the hands of the people who had made the mistake in the first place, and was going to have to be very polite to them, and pretend we were all on the same side...And that is a feeling that I had got to know very well indeed, and the fact that, fortunately, I was not the victim of this particular long-term consequence was only to some extent relevant.

For years, I worried that my vast increase in weight was solely and wholly a matter of my diet, or my drinking, or my failure to take enough exercise - all this in spite of the fact that I ate healthily, did not drink all that much and went swimming regularly. Whenever I mentioned my concerns, I was told I was eating too much; when my GP sent me back to the urologist because fo the oedema in my ankles, the urologist simply denied that there was any oedema. And when I went to see an endocrinologist, and got there early, it was to spot my former urologist coming out of his room. It was enough to make a person paranoid as well as depressed.

I would see doctors and surgeons, who would tell me to go and see hospital dieticians, who would always tell me that there must be something else well because my weight gains were not explicable in terms they could deal with. And I should go back to the doctors. And then a friend who had practiced as a GP before giving it up for alternative medicine, and a former pharmacist now working in IT, both independently asked me whether I had been on cortisone at any point.

I acknowledged that I had - why? Only the distribution of my fat, round the side of my face, and low slung across my abdomen, was classically a symptom of cortisone poisoning. When had I taken it? Oh, they had used it to get some skin-grafts to heal, that weren't healing. So the flesh was raw at the time? Yes; why? It shouldn't have been - cortisone is not meant to get into your bloodstream that way...

What is objectionable about the situation is that you have no obvious way of finding out the truth about how and why things go wrong. And there is no possibility redress without a lot of unpleasantness. I did not want to sue, because I did not want to jeopardize the existence of gender reassignment surgery, and because, after being in and out of hospital for three years, I wanted to get on with my life again, and because I knew that there was a fair chance that anything I said about how I had been treated was going to be discounted because I was obviously a crazy person - I had got what I sickly wanted out of the NHS and now I was complaining.

I lost three years of my life to too many things going wrong for it to be just bad luck; they put much of what was wrong right, but no-one ever told me clearly what was going on, half the time, and no-one ever explained how things had gone so badly wrong in the first place. And, though they devoted a lot of time and money to correcting disasters, they several times managed to create new disasters in their place.

And no-one ever said sorry.
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