The first news is that the news is not good. I saw the surgeon on Friday; the histology shows that the cancer had invaded more than half the muscle which makes it stage two. I will see an oncologist in a fortnight and discuss what this means, they are talking irradiating me, which will burn me inside in the interests of seeking out cells which may or may not be there.
The problem is that everything else that happened following the treatments and investigations made me so ill that I doubt my ability to survive further treatments.
So to continue where I left off. After the operation they said they had got everything out in one go, which was good, then they showed me how to inject myself with blood thinning medication. This is not easy. First try I broke open the sealed vial, removed the syringe, took the rubber tip off and then chucked the syringe into the ward floor where it vibrated back and forth, thinning the concrete and lino. Such a help. Second go I got it into myself where there is still a lump and a huge bruise and this really is where the subsequent trouble began.
At home, where as the bathroom is still being updated, (we don’t have one,) going, as you do: Is this where I live? (Yes but not for long dear, don’t get excited) I injected myself again and I knew, I just knew, for me this was not a good thing.
Well the OH went to quiz night early as is his wont and I felt so ill. I said as much when he returned. I sat in bed feeling so ill, rolling with sweat and the shivers alternately. Finally at about two in the morning I put the light out but continued to sit up with the heirloom bowl close to hand. The heirloom bowl is a pale green washing up bowl from the nineteen forties inherited from my mother from a time when plastic was a miracle. It is huge. My mother used to soak both substantial chilblained feet in it simultaneously right through the fifties. It is not small. It is enduring and thick and may be found at the apocalypse on the blasted ball of rock filled with cockroaches and clutched by David Attenborough saying he told us so.
At quarter past three I began to vomit and went on doing so for a good five minutes or more. I shouted for the OH. I shouted four times before he came to to the door. ‘What?’ I asked him to turn the light on three times before he did it and then I was glad I had vomited in the dark because I’d have been terrified if I could have seen what I was doing. I had vomited blood and filled the bowl to the brim. I asked the OH to carry it carefully along the landing to the partial bathroom before phoning the ambulance. Following and half way along the landing I heard the unmistakeable sounds of someone pouring a bowl full of vomit down the toilet. I ran, shouting ‘Don’t flush!’ and was in time to stop him but he complained that he needed to pee. The OH was an emergency planning officer. He is a trained first aider. Quite when all this training and common sense left his brain to be replaced by the answers to pub quiz questions, I am not sure. Anyway he went down stairs to pee, got dressed and rang the ambulance and off I went to the hospital I’d only left a day and a half before, in an ambulance. I went into A&E. where, a few hours later I repeated the vomiting blood (this time black and thin and about a litre and a half) trick by which time everyone was certain I was vomiting blood and I was admitted.
So eventually, early morning, I was on the ward, the OH removed the nice new fluffy dressing gown that I’d bought to go into hospital with, over which I had been comprehensively black sick and took it away to wash, together with the furry bedcover and all other collateral damage.
And then began the dire investigations that made me so ill. First they X-rayed me then decided to get an endoscope down me to see what was going on. This is a horrible procedure. I had it several times when I first had Barrett’s Oesophagus after which research, with which I heartily agreed, showed that it was probably doing more harm than good. They put a plastic mask on you like the Silence of the Lambs and then shove a camera down the hole in the middle and you retch all the way down and all the way back up again. It is brutal. But first, on the ward, Nil By Mouth. As if there could possibly be anything left in me. I was allowed an inch of water in a cup, which I was eking out until the cleaner knocked it over. I asked for more but the sister said primly that Nil by Mouth meant nothing and took the cup away. By now everything from my stomach up, all tasting of old blood was cleaving to everything else and I doubted they’d be able to remove my tongue from its welded position on the roof of my mouth to get the camera down. But came the hour, eventually, and I was wheeled in a bed in a draughty gown, right through the main corridor of the hospital to Endoscopy and the dreadful deed was done. And what did it reveal? It showed that I had an inflamed oesophagus. You don’t say. Half a gallon of stomach acid going up my oesophagus has inflamed it, has it, quel surprise.
So I was wheeled back, covered in stomach acid, decanted on to a chair and observed. A day and a half later when nothing else had occurred I was discharged but I knew it wasn’t over.
I sat at home, sipping fizzy water, which tasted funny, sipping tea, which was horrible. The only thing that tasted OK was watermelon, so I had little cubes of that. By tea time I was sitting by the heirloom bowl, halfway through the evening I asked to go back to A&E. ‘Two hours waiting in A&E?’ asked the OH with some justification, ‘Are you sure?’
But I was and so it was early hours again when a doctor felt my stomach, I immediately filled a couple of bowls with black blood and there I was, in again.
And, as you might imagine over the course of the next few days I had every scan there is. I had days of Nil By Mouth followed by Please sip all of this radioactive water. I had another night of vomiting black blood. I had black diarrhoea. Of course, having no water, I had a temperature and an infection and antibiotics. Because the ward was so hot and dry my sinuses became inflamed and I got through two boxes of tissues a day. And coughed and coughed. I had a sonogram which disclosed that my colon had fluid filled loops. Sounds like a nouvelle cuisine pudding doesn’t it? Three fluid filled loops and elsewhere on a huge plate, five dwindling dots of custard and you know you’ll be hungry again by the time you get to the bus stop.
They sounded surprised but I thought if you intermittently starve someone and then get them to drink a lot of water, fluid filled loops is what they will have. Then there was the late evening when an earnest young doctor told me he would like to cut my bowel up and rejoin much less of it. Then there was the worst night of all when I heard them talking outside of the curtains round my bed about naso-gastric tubing me ‘for completeness.’ Hmmm. Run out of things to do? So later a young Asian doctor with a high pitched nervous laugh tried to shove a tube down my nose into my stomach. And the way she did it was by laughing and jabbing. Jab, jab, jab down my right nostril, jab, jab, jab down the left. By the second go in each nostril I was crying but she went off and fetched a thicker hose and had another two goes each nostril by which time I was squirting blood out of each nostril like a fountain. So she left, laughing and blaming my sinuses and I rested back and bled and blew and blew and bled.
At midnight two utterly huge Sikh doctors appeared and said they were going to have a go at the naso-gastric tube at which point I put my foot down. Neither of them could explain how it would help except that they could aspirate vomit and save the oesophagus. I pointed out that that would not be the oesophagus, that would be my oesophagus and they could do it if I vomited again but until then I was in my rights to refuse this treatment which I didn’t feel was treating anything.
And they went.
Feeling like a suffragette I realised it had been at least a day since I had vomited and that there was a possibility I was getting better despite the treatment.
So the next day it was Nil By Mouth, sip the heavy water, off for a CT scan. Which is the point at which my veins failed and I had a bolus of iodine hanging off my arm. But they got a new line into me, got the iodine in and did a scan. No blockage of anything, frustrating the young doctor who was so keen to chop my bowel up, just fluid filled loops.
Back in the ward I was finally allowed to drink normal water, the OH brought in watermelon, I slept, as much as is possible when you are blowing your sinuses and the blood out every half hour and two days later I went home.
I am still blowing scabs out of my nose, I am still covered in bruises and lumps but I have been at home for a week and will hopefully stay here, though I am still taking the heirloom bowl to bed, in case.
So you can see why I am so very keen not to be irradiated.
I am tough. My life has made me tough. I have had fewer hugs than people using me and abusing me, and I’m only little. The people in my life who have actually been kind to me have been very few, mostly people have been looking to see what they can get out of me. Some weeks ago the OH expressed frustration that I hadn’t invested my inheritance (the solicitors haven’t finished yet) ‘You just won’t let me get my hands on the money, will you?’ he said, He hugged me yesterday, for the first time in months but I had to ask. The kindest thing that happened was a doctor who rubbed my back while I was being sick in A&E. That’s proper doctoring in my book. I hope he goes far.
As for the bathroom. Well I was told that I wouldn’t be able to climb over the bath after the op. We had an old bath with a shower over in a room filled with black mould. Well I called the plumber who came and had a look and said he would do it in two days like Anneka Rice or some other TV miracle worker. We went and chose fittings, showers and so on in two visits to the plumbers merchants and then, because I had an impending sense of doom I paid the plumber and the builder upfront even though they both demurred (but not loudly). And as you can see my instincts were good. Did I come home to a fully functioning bathroom sixteen days later? Did I heck as like. Mind you part of that was because the OH insisted that the mould filled ceiling was pulled down and a new one installed. He was right, there is no point in covering up black mould. He variously went and got showered at the gym and I got washed in the heirloom bowl.
But today the OH has put the third coat on the ceiling, tomorrow I will phone the plumber and ask them to finish off and showered and clean I shall continue to recuperate.
The decisions and consultations will be around Miniatura, so I think it better to absent myself now. I’ll see you there in the autumn when hopefully, all this will be a saga of long ago, the upshot of giving my time and life to people who are careless of it. For now all I want to do is write my book, though if the plot is to follow real life it should probably be much more dramatic than I had planned.
Some people have very quiet boring lives, I hear.