Saturday 25 August 2007

Poker with Izod

Every month a group of my (now ex) colleagues meet up at one or others' house for a home cooked meal and a game of poker. They take the money they would normally spend on a night out and put it in the pot for a poker game. By all accounts they have a great evening and balanced out over a year or so most of them find they have won as much as they have lost.

I've never attended. I'm not a dedicated gambler and have never regarded it as a form of entertainment worth paying for but recognise I could be wrong in this. Several friends and relatives view a holiday in Las Vegas as much more fun than spending several hours underwater, watching fish, every day. On the odd occasion when I have played a machine or laid a winning bet I've been only too sure that my luck won't repeat again so I've taken my money and run.

On my last evening in hospital the Worcester butcher came to see me together with the specialist nurse. They'd received the pathology report. Elaine was down in the cafe as I'd been eating my evening meal in my room and she'd left me to it but the butcher started straight in. He'd excised the entire tumour and a margin of healthy tissues all around and below it. He was entirely confident that my cheek was now healthy with no tumour tissue left in my mouth. He'd also removed sixty lymph nodes from under my jaw and in my neck. This was a personal best! The most he'd ever removed before was fifty-six, or maybe fifty-seven. Of these sixty only four showed evidence of cancerous cells. All four were just under my jaw bone showing the earliest stages of spread as the cancer spreads slowly down the neck through the lymph system. As the nodes collect cancer cells they 'fill up' and some glands can show signs of 'escape'. Of my four affected lymph glands one shows this tendency.

Over the years the medics have drawn a line between those patients who need follow up treatment and those who do not. Follow-up treatment is normally radio-therapy (or being zapped by a Dalek). There is nothing pleasant about this. For the first two or three weeks you are hardly aware of anything happening although you may get increasingly tired as the rays zap the energy out of you. But you have to go every day (although you do get the weekends off). Fortunately NHS transport is available for this as our nearest Dalek lives in Cheltenham. A door-to door service apparently. About 3 weeks in you start to suffer from zap-burn which is a bit like sun-burn. A skin cream is provided to sooth this and I am told that olive skin like mine which does not burn easily in the sun, may offer some protection. After that the inside of the mouth may begin to blister and ulcerate, the tongue may become swollen and generally the mouth becomes uncomfortable and painful. The rays can also damage the bone of the jaw and the tissue structure. They kill off the hair follicles - so I won't need to shave my left cheek again but also the salivary gland in the same cheek. Fortunately the right cheek will be protected and so saliva output should still be sufficient to avoid the dreaded 'dry-mouth'. I really don't fancy meeting the Dalek.

The line the medics draw between needing zap treatment or not is more than three affected lymph nodes or having just one where there are signs of 'escape'. I qualify, just, on both grounds. It took the Worcester butcher a good five minutes or more to get round to this. Again I was considering a murder defence on the grounds of incoherent incompetence and scientific obfuscation when I was told that Dalek treatment was "strongly recommended".
"Oh shit!" I thought. "Shit, shit, shit, shit, shit!!" I couldn't believe that I was so unlucky as to have put just a toe over the line. Just one gland less - if it had been the right one - and I would have escaped the Dalek and his zap-ray. Just my bad luck. Is it any wonder that I don't play poker?

Elaine returned and we recapped all the information we had just gone over. The precise details of the zap treatment will be left to the Dalek but as everything has probably been removed there is no immediate rush, they will give my mouth some time to recover first and the treatment will start in three or four weeks or so. I may need my mouth zapped or my neck or both. It may last four weeks or as many as seven. Some people breeze through with very few side effects, others find it unbearable and cannot complete the course of treatment. Then the butcher left us together, with the good news that I could go home tomorrow.

Of course, there were people to contact and give the news to. Father, friends, sister and so on. During the course of conversations I came to realise that there was another point of view. It may be three or four weeks of suffering when eating may prove almost impossible (I will still have the feeding tube in my stomach to inject food drinks through) BUT it will make it a 'Belt and Braces' treatment. On my last day in hospital I met a man who had had surgery a year ago for oesophageal cancer. They had reconstructed his oesophagus by using part of his small intestine but it hadn't worked properly and something had blocked up causing him to become anaemic, loose weight and generally spend most of the last year in or visiting hospital. He was back today to be admitted for more surgery. I certainly hope to avoid that level of familiarity with the nursing staff!

So perhaps I'm not unlucky after all. Perhaps my 'bad luck' is actually good luck in disguise. Maybe what I'd hoped for was actually the worst possible option and what I'd feared was actually the best. I can't tell whether I'm lucky or unlucky as I can't tell the difference any more. Is it any wonder that I don't play poker?

Wednesday 22 August 2007

Back Home


Well, that's that over then!!

The operation took ten hours last Monday week. I asked the nurses whether they got a lunch break and they said they did; I asked the junior doctors whether they'd had a lunch break and they told me that they had taken turns; I asked the consultants and they admitted that they'd left the theatre to eat as well - seems I was the only one who didn't get get a lunch break!

I met the anaethesist on Monday morning and told him of my fear that I might be one of those you hear about occasionally who are paralysed but not unconscious and thus remember every moment and every pain of their operations. "Don't worry," he said, "I'm going to have you pretty deep and you won't be paralysed."

I went to sleep happy... I woke up happy. I was aware of people talking to me, of hands on me, of questions being asked, of realising it was over. People were telling me that everything had gone well, that I was on morphine, that someone had rung Elaine, could I wiggle my fingers on my right hand? I could. Was I in pain. I was. Where? It was a cross between charades and pantomime to get them to understand that my back was aching terribly. Eventually I got one of the junior doctors, a rather attractive, slim, young lady in fact, to understand that I wanted someone to rub my back or give me a massage. Before a masseuse could be summoned someone electrically adjusted my bed and raised my feet. The relief was instant and magical.

I gestured with my left hand that I wanted to write. I was given a pen and what felt like a thick pad (it turned out to be my medical notes) and I wrote answers to all the questions and asked a few of my own. The one thing I could not do, because I felt too lazy, was open my eyes. I wrote the right way up, I wrote upside down, I teased the nurses, I found I couldn't speak (I had a trachyostomy in my windpipe), I found I wasn't in pain (except for my back), I had no idea what the time was, where I was exactly, who was talking to me or what I should be doing. I got them to ring Elaine and then just made whatever noises I could down the mouthpiece - banging, scratching, rubbing - anything to let her know I was OK and as eccentric as ever. In the background I could hear a nurse trying to guess what I was doing, "Oh, morse code, no ... it's a signal?"

"No," I wrote, "it's just noises." And she read this down the phone to Elaine who got the idea.
Satisified that I was alive, not brain damaged and functioning satisfactorily, most of the audience withdrew and left me to the nurses. One asked if I'd like to listen to the radio. I nodded and she put some headphones on my ears. It was tuned to Radio One but from my expression the nurse judged that this was not what I wanted to listen to. Eventually we got to Classic FM and stopped there. Amazingly, at night this station broadcasts complete symphonies and concertos with no comments, advertisments or interuptions. It was just as well as I was disturbed every hour for my readings to be taken - blood pressure, blood oxygen levels, pulse and temperature. I didn't get much rest but I was totally out-of-it anyway.

Recovery started the next morning. The entire troop came to visit showing particular interest in the flap inplanted inside my cheek. They felt the pulse, checked the colour, looked for discharge and pronounced themselves well satisified with their handiwork. After lots of encouraging words and noises they all moved on to the next patient and left me speechless, being fed through a drip, still zonked out and anticipating the physiotherapist. Next time I opened my eyes there she was. I had to practise swallowing, moving my head up and down, round and round, shrugging my shoulders, tilting my head, a zillion and one things that had come totally naturally two days ago that I was going to have to learn all over again. Then I was taken for a walk. I had a velcro fastened belt fixed round my waist and then, with a physiotherapist on either side, holding me up, we strolled down the corridor. 5 minutes later I was back in bed my excitement over for the day.

Two days later and looking like an unfinished work by Dr Frankenstein!!



A couple of days later a nurse turned up with a brain in a glass bowl. "We found this in the theatre," she said, "and thought it might be yours." I accepted it greatfully and gestured that she should install it. At last I was beginning to feel me again. Later the same day the ward sister, Sue, removed the trachy and suddenly I could speak again.

Talking actually got harder rather than easier as days went by. As the wounds healed scar tissue formed and this is thicker and less flexible. It got harder to open my mouth wide so brushing my teeth and putting food in became harder too. I have to talk in a really posh way now exercising both lips and tongue to try and maintain maximum flexibility and control - it's too easy to be lazy!

Time in prison got increasingly boring. I walked every corridor, balcony and basement available, stood people-watching in the main entrance, even got dressed and walked around the outside of the entire hospital. I could read again, get onto the internet, listen to the radio, watch TV or try to do puzzles in magazines but time passed so slowly that I even had to resort to sitting on the loo for something to do! Fortunately my afternoons and early evenings were filled with visitors and most mornings one doctor or another or a small posse of them came and inspected their handiwork. Blood was taken, blood pressure and pulse read, visits from the physios trailed off as everybody told me how well I was doing and what a good recovery I was making. Eventually Wednesday 22nd was identified as the day to go home. It was a beautiful day, I got the all clear, packed my bags and waited for Elaine.

By 4.30 that afternoon I was home, in glorious sunshine. We walked down to the post box, and back along the common. It is good to be home. I still have the dressing on the skin graft to my right hand and as such I cannot lift, carry, dig, garden, build, decorate, drive, throw and a host of other ordinary activities. They did offer to change the dressing but I knew this would only persuade me that I could undertake some of these tasks. Hopefully it will come off when I visit the hospital next Tuesday to be replaced by something lighter but as it hasn't seen the light of day yet there is still a bit of trepidation.

So, there we are, the story so far. Next exciting installment will look at why I don't play poker.

Sunday 12 August 2007

Plan A for Again

It's Sunday afternoon and this time tomorrow my surgery will be more than half way over. It's going to be ugly! Still, I won't know anything about it as I'll be out cold under anaesthetic and I understand that I'll be pretty zonked out on morphine for the next few days. I'm told that facial surgery is not too painful so fingers crossed!
I have to have a couple of major grafts; skin from my inner forearm goes into my mouth to patch where the tumour is removed and then a graft from my stomach goes onto my arm. Apparently belly tissue is not good enough to go in the mouth. They also have to open my neck up as those lymph nodes have collected some cancerous cells. They will have to come out as will other tissue that may contain odd cells. Apparently this is the more delicate and demanding process.
Once it's all over the tissue removed goes off to pathology for examination and then judgements are made as to whether further treatment is required - that may be radiotherapy or chemotherapy. I won't know for several weeks.

I've already spent a couple of nights in hospital having a 'PEG' inserted. This is a little plastic tube that is stuck straight through into the stomach. It will be used for feeding me after the surgery on my mouth as I won't be able to eat for some time. They will keep it in, in case I have to have radiotherapy as that may stop me eating as well.
Having it inserted was not best fun. It's done under local anaesthetic and they stick a TV camera down the throat. When the camera is in the stomach they turn a light on which can be seen on the belly - punch a hole through and insert the tube. Of course you gag and feel uncomfortable as the endoscope is pushed through but the well trained team of nurses holds you down like professional judo fighters and resistance is futile. The wound is a bit sore but hasn't stopped me working in the garden (on light duties) this weekend.
Fortunately it has been a lovely weekend. Rather than go off shopping or exploring we've largely spent it at home although we did go out for afternoon tea yesterday. I'm going to miss working in the garden for the next ???? weeks - things are just coming together but there are still a lot of projects to undertake. I will feel cheated if for some reason I can't get round to them some time in the future.

Hopefully, by tomorrow evening Elaine will have been contacted by the surgeons. They've told her there will be no point in coming to visit tomorrow as I'll still be out cold so I don't expect to see her until Tuesday. I don't know when I'll be able to make the next entry here - or even talk as I'll have to have a tracheostomy during the surgery so the docs can control my breathing. That will be in for a few days at least so I'll only be able to communicate by writing. The next you'll hear directly from me may well be more than ten days away. My hospital recuperation is likely to be 10 - 14 days - well at least I'll be getting my money's worth out of the NHS.

Wish me luck!

Tuesday 7 August 2007

Mr Draculamp and the Broken Wand

It was half past one in the afternoon when Ron and Elaine struggled into Glass Fairy Towers. They steered the heavy bag full of books, pyjamas, lap-top computer, slippers and other paraphernalia for a hospital stay into the lift and up to the fourteenth floor. They had gone to see Mr Draculamp the Magician who was going to turn Ron into a vampire. As they stepped out onto the 14th floor the view across Giant City was astonishing.

"Look Elaine", called Ron, "I can see the Horses of Parlomint .... and the Brushes Museum .... and look, there's Raver's Park!"

At every point of the compass Ron could see places he knew from his younger days. Looking down on Giant City they could see people, vehicles, tree and parks, buildings, shops and stations. In the distance were the TV and Radio masts at Cristile Palace and Alestandra Palace. A line of heavy flying machines could be seen heading for Headrow.

"Hello, you don't remember me, do you?" said a little, blue-robed pixie. It was Anna the Pixie Nurse, one of Mr Draculamp's special helper's. She had just returned from kayaking a tent round lakes in Sweden. Anna took Ron and Elaine to a lovely room with a spanking view and took a little time to explain about life as a vampire. It didn't sound as though it was going to be as bad as Ron and Elaine had expected. For instance, the lid on the coffin didn't have to be put on completely; some people described the injection of vampire juice as 'painful' but others only said it was 'uncomfortable'; it was quite possible to drive at night after an injection without having to worry about the effects of headlamps on cars coming towards you. Well that made everything so much better, didn't it?

"OK", said Anna the Pixie Nurse, "why don't you unpack your things and then someone will come and start the ball rolling."

Ron and Elaine started to unpack. Out came the breathing machine to stop Ron snoring; out came the laptop computer for watching DVDs on; out came the books to stop Ron getting bored in the semi dark; out came the clothes; out came the light-proof balaclava and the gloves; out came the wash-bag and everything was put away neatly and tidily. Ron and Elaine waited, and waited, and waited, and waited.

At last, after so many centuries of waiting that the Giant City had started to crumble and was being invaded by forest; that Ron and Elaine had been buried under spiders webs; that the heavy flying machines no longer caused any pollution or noise, Little Fee arrived. Little Fee was studying a course on how to avoid upsetting patients when giving them bad news.

"May I have a look at your mouth?" asked Little Fee. Ron consented and Little Fee had a good look inside at the tumour, at the soreness, at the ulcers and the teeth which pointed in the wrong direction.

"I see, I see, I see", said Little Fee. "Now, we're going to have to reassess your treatment."
"I'm sorry?" said Ron.
"I'm sorry?" said Elaine.
"You see," said Little Fee, "the cancer has spread into two of the lymph glands under your jaw. This means that we will have to reassess your treatment," and off she went to collect Nick the Master Butcher.

"Now," said Nick the Master Butcher, "do you want to get well? Do you want me to cure you? Because if you do this is how I'll do it." And then Nick went on about thigh flaps, treatment modalities, dental extractions, micro-vascular reconnections, radical neck dissection, lip splits and lots and lots of other interesting things.

"But what about Mr Draclulamp's magic vampire juice?" asked Ron.
"Oh no, you're too ill for that!" said Little Fee.
"Oh no, you're too ill for that!" said Anna the Pixie Nurse.
"Oh no, you're too ill for that!" said Nick the Master Butcher. "That's only for people who are superficially ill. You'll be much better off letting me cure you. Nobody knows WHAT will happen if we start mixing treatments. Nobody has done THAT kind of magic before."

"But Mr Draculamp said HE could cure me!" said Ron. "He said his magic vampire juice and his magic laser wand would kill the tumour and make it go away."
"Ah, but he didn't know about the lymph glands," said Little Fee.
"Ah, but he didn't know about the lymph glands," said Anna the Pixie Nurse.
"Ah, but he didn't know about the lymph glands," said Nick the Master Butcher, "and THAT changes everything. Now Mr Draculamp COULD treat your tumour with his vampire juice and magic wand and then turn you over to me to do a modified, radical neck dissection ... but we don't know how it will work as no-one has done this before; we don't know what might go wrong as no-one has done this before; we don't know how to time it as no-one has done this before; we don't how to be sure we'll get it right as no-one has done this before."

"Oh shit!" said Ron.
"Oh double shit!!" said Elaine, "What does Mr Draculamp say?"

"Mr Draculamp is abroad in Earlupe today," said Anna the Pixie Nurse.
"Mr Draculamp is abroad in Earlupe today at a conference," said Little Fee.
"Mr Draculamp is abroad in Earlupe today," said Nick the Master Butcher, "but he will be here on Monday. Now nothing is going to change before then. Indeed, if you agree to let me make you better we can't do anything before August 28th as I have to go away on holiday."

Ron and Elaine had a miserable weekend trying to be happy. Then on Monday morning they caught the subterranean railway propulsion vehicle and travelled again to Giant City to visit Glass Fairy Towers. They were there good and early and so was Mr Draculamp.

"Hello," said Mr Draculamp.
"Hello," said Ron.
Elaine gave Mr Draculamp one of those looks that kill at thirty paces but as he was a magician it had no effect.
"I expect you're really upset," said Mr Draculamp.

Then Mr Draculamp went on to explain that he thought he COULD still cure the tumour with vampire juice and his magic wand BUT no-one had any experience of mixing treatment methods so it was risky. He said that if it was him he MIGHT go that route, but he was a risk-taker; if it was Mrs Draculamp he would tell her to take the surgery without hesitation.

Ron asked him, "Will you still use the vampire juice on me?"
"Only if you twist my arm off," said Mr Draculamp.

"We need a cup of tea," said Elaine. "Come on let's go."

So Ron and Elaine went down to the 'Really Expensive Cafeteria' for a cup of tea and a bun. They didn't need to talk very much as they both felt there wasn't really a choice and anyway all their blackouts had been taken down by the Helpful Neighbours when it seemed as though the magic wand would not work.

So sadly the next day they trekked back to Worcester and went to see the Worcester Butcher who said, "I thought I'd see you again. Don't worry, we're just as good as those Butchers in Giant City and we can make you better as well, can you come next Monday?"

And the moral of this story? - If things seem too good to be true, they probably are.