One month on

Clare and I on the Island of Islay several years ago
(I found a load of unprocessed films and this was one of the frames)

It’s a month now since the operation.

Physically I am pretty strong again, and I can do all the things I need to do. Walking into town is no problem, I can drive a car, I can eat what I like. Banquo is fairly well behaved and tends to venture into soliloquy mostly in the mornings, when he can be pretty loud. But after initial griping he calms down and is quiet for the rest of the day usually. I have had a few moments of worry, for example in the cinema when, in a quiet and tense moment in the film, I have feared Banquo was going to upstage the proceedings, but so far he hasn’t.

To give a quick, sanitised, wholesome run down of the waste collection and disposal system: There is a base plate made of thick plastic and rubber, with a hole in the middle. Its about the size of CD and flexible. The back of it is sticky with some extraordinary adhesive. Banquo sticks out through the hole, which I have to cut to the right size. Added to this, there is a bag which, about the size of a pitta-bread, sticks to the base plate. This bag is actually quite a wonder of invention. It is completely water proof and is made of a kind of thin papery material. It is also totally hermetically sealed so not a whiff escapes. The bottom of the bag is sealed in the three folds, and Velcro. This can be opened to drain the bag.

It isn’t pleasant, but the trick is to have everything you need ready, turn on the radio and just do it without thinking about what you are doing. Just listen to the radio, wash your hands and re-emerge into the world. After all isn’t this what you bum-wipers do really?

I have found that I have to learn to sleep in a different position. My preferred position- a kind of recovery position - being uncomfortable now. I slept like this one night and I think my body weight and the shape of my belly must have caused a bit of a leak which was really annoying. After speaking to the Stoma Nurse (who is brilliant) I was issued with a very attractive elastic belt which holds the whole thing in position more firmly. I have also discovered that attaching the base plate whilst standing up rather than sitting ensures a better seal.

Sometimes you feel a bit like a plate spinner who hasn’t got quite enough hands to keep everything going, but its OK I have learned it now.


Psychologically it has been OK, and I have not really lamented. I have wished to go for a swim and a sauna very much and I am working on the sartorial problems involved. I’m thinking of something like a triathlon suit which stretches from the thigh to the neck. I’ll solve it soon. I miss exercise and swimming and sweating a lot. I miss the chatter and gossip too.

I was asked the other day if, knowing how it is now, whether I would have had it done sooner? The answer is I’m not sure. Many people report an almost euphoric feeling and use phrases like “I’ve got my life back” I have not really felt quite like that. It is great to not have to constantly monitor my proximity to the nearest loo. It is great not to have to constantly carry what I used to call my “shit kit”. It feels a bit weird sometimes, and I suppose I do vainly wish I could disport myself in a pair of budgie-smugglers.

My scar is nearly healed. When I went to have my stitches out (actually staples like you find in stationers) I had every other one out the first day. Did they think I was going to open up like a book?

When I went to have the remainder taken out I felt a sense of freedom. Sadly when I inspected myself at home I found that she had missed FOUR! I had to return to have them hoiked out as well.

I have also discovered a well written, witty, and truthful blog by a man called Martin who has passed this way before. I recommend it to you. You can find it at

http://numbertwos.blogspot.com/

OK. Got to go back to sleep now; it’s 6 in the morning and I’m running a workshop later.

Where do I go from here?

My lawn, my maze.

I think it’s time to look back and reflect a bit on this experience. Now that I have got to what must be a stop or two above base camp.

I have been trying to remember how and why I made the decision to have this surgery. First and foremost there were considerable medical grounds for it. I can no longer have Ulcerative Colitis; I may have a few new things to think about, but that has gone forever. Also I was in a high risk group of developing bowel cancer, and that too, can never happen now. So there are two excellent reasons for the decision.

There are others as well though, the most obvious of which was that 2009 saw me at death’s door twice, and that can’t be good for you. I could still stand there again for some reason or another, but the most obvious potential causes have gone.

And for the foreseeable future at least, I won’t be constantly mapping my proximity to the nearest loo, no longer worried about getting a 40 second warning in the middle of lecture, or whilst operating a camera in some loo-less environment.

There is another set of reasons, and please don’t take this the wrong way, but getting shot of the medical establishment is a plus too. No more colonoscopies, no more 4 or 5 hour infusions of Infliximab, no more weird cold stunted conversations with doctors. I am through with that. There may be more to come, but in a sense I have moved forwards and away from their grasp in the long view. Was it Winston Churchill that said “If you are going through hell keep going”? Yes it was. I just looked it up.

Looking back on the experience to date, anxiety and fear have been my biggest enemies. Worse really than the hospital experience, and very undermining to a positive engagement with the actual moment of incision. Here I want to say that, for me, Hypnotherapy has been very useful, interesting, and powerful. True I was still scared as hell as I lay on the anaesthetist’s gurney, but I did at least have one or two strategies left in my nakedness.

There were also times when, on the run up to the operation, I was feeling physically and emotionaly happy, and I had to remember to notice and keep them. It might be happening tomorrow, but they weren’t getting me today. Just one day at a time.

I also tried hard to project myself forwards in time and remind myself that it would be different, that there would be another day. I am happy to say there is.

My own network of friends; people I love, people who love me helped hugely. It was good to take comfort from the support and warmth of these people. I love you all.

As for the future; who knows what it will bring. At the moment I am trying not to focus too clearly on the mechanics and plumbing of my new life, I am just doing it. I have enjoyed setting and achieving one tiny small goal – walking into town. This is like a little plant that will grow into my new gym, I intend to walk frequently into town, have a cup of tea and walk back. When that is easy I will do a different walk. Who knows I may even manage to run again one day.

In the future there is also the question of “reversal” in which I end up with a pouch inside me made from me. This would involve perhaps two more operations, and may mean that I am back to running to the loo. On the other hand it might not.

Who knows? Maybe I will end up fitter than anyone thought I would be. For the moment I shall aim for that.

Moving on

A photo taken during one of my more formal lectures.
(thanks to student camera)

Today Gabriel (youngest son) became a man. 18 years old, out there and up for everything. The day starts out in our bedroom with the whole family watching Gabriel unwrap his presents.

Since I am unable to bend in half normally, one of his first chores as a man is to tie my shoe laces. I think there’s a certain beautiful poetry to that. Wow! he’s done them pretty tight!

Banquo starts working, by making all sorts of gurgling noises. Still no real substance to his spectral interjections though.

Later on we went for a little walk, was still hard to walk and stand fully upright due to the cut down my belly. Nevertheless we did a few hundred meters down the road and back, and this less than a week after the operation.

Sadly, when I got home I felt absolutely knackered out, and had to go and lie down. Not long after that I was really sick, which really hurt where the incision was made.

There is a part of the post op experience that is like some accounting exercise, in which you compare what goes in with what comes out. I need to get Banquo going properly, so I need to eat FOOD. But I’m not hungry, and the thought makes me feel queasy.

I ate a few bits and pieces but actually even a fledging in the nest would be hungry at the end of those small morsals. This is something I need to work on. I just want liquid, but I need to eat more substance.

So now starts a new part of the experience in which I try to navigate my way back to strength and my real life.

One week after the operation now, and I feel I’m making progress. Today I walked all the way into town (2.8 miles according to the internet), did a bit of shopping (lamb chops) bus home, two visitors, cooking and eating said food. It feels good to start the return to my life. It will not be the same but it will be more mine.

25-12-2009

Christmas Day dawns in E14. There is a noisy change-over of nurses as they wish each other happy Christmas.

I get up, and move slowly like a wounded animal, down the corridor to the shower. I want to look bright and alert for the ward round, as healthy as possible.

Ivor had an intense discussion with a doctor last evening and he has discharged himself. His friends will pick him up at 8 am.

Martyn is nearly obscured by tubes, just some crazy white hair and eyes visible.

Steven has had a difficult night, and has an overactive stoma. Show off!

Another cup of tea, and I try to eat some of the hospital breakfast. There has been some stupendous farting but Banquo has yet to deliver a soliloquy.

Ward round. The doctors gather round my bed. They have been discharging everyone they can. The consultant looks down at me.

“Working yet?”

“Just farting”

“Feel OK?”

“Considering . . . yes I feel OK”

“OK then you can go”

They move onto the next bed. I start to look for my mobile and ring Clare.

How incredible. To think that I am getting out only 4 days after surgery. I am very pleased. Very pleased.

There was then a number of visits from the pharmacy, and instructions on what to do next and who to contact. It was probably only an hour and a half later that I left the hospital. Pushed down the corridors by a tiny nurse called Fatima with a scarf over her head, with Josh lolloping alongside carrying all my stuff. Out into the cold Christmas air and into the car. Back home.

The irony is that as soon as I got home I went to bed just as I would have been in hospital, but your own bed is different.

I slept.

Silent Night

There’s a strange kind of unity and bonding that happens in a hospital. The other people who lie around you, in their beds like ships sailing out into the unknown, they become almost like family.

After a few days they are no longer strangers, but people you know. You have watched them struggle through the night, seen the way they deal with people and circumstance that comes to their bedside, know their fight, know their medication, drips, preferences. It’s profoundly human to watch others, but this is not people watching in a café or holiday market. This is real – people dealing with the base reality of who they are. That really is profoundly human.

So I became quite fond of my fellow travellers.

You also get to see the Nurses and Doctors, and they can be brilliant. But somehow they are always and inevitably in a different tribe. Part of that majority tribe. Inevitably there is a power relationship of some sort going on.

When Steve the fellow “osteo-mate” asks how you are today it is not the same as a nurse or a doctor asking you that question.

My approach is to make sure that I give something (not physical but human) to every person that comes to my bedside and that I take something similar from them. To make sure that every exchange has value and meaning.

I have named my stoma “Banquo”, an unwelcome guest at the party, but essentially a good person despite his gory appearance. It was very difficult to stand up and move about at first because of the long scar down my belly which impeded so many actions. I awoke fitted with a bag, and with the scar covered by a dressing. But after a day or so the dressing was rather gory and wrinkled from being in the bed. So I took that off in that in the shower.

Eating was difficult, and I hardly ate anything at first. I mean really nothing. Why would you? Black tea was good, and I was really thirsty and wanted squash and water all the time.

Every morning there is a ward round when the senior doctors come and check your progress. Initially Banquo was not working, but for some occasional dramatic farting noises. They wanted to make sure the stoma was working before I went home.

In the dark Christmas Eve of 2009 in E14, Martyn opposite me rings for a nurse, Ivor mutters quietly in Russian, and I read through eyes that are gritty with lack of sleep.

In the early hours I eat a tiny amount of yoghurt, and some jelly. Put something in to get something out.

A nurse brings me black tea in the strange flourescent dark that you get in a ward.

"Alright?" she asks me

"I'm worried the stoma doesn't work - aprt from farting"

"You'll be fine. If you're farting it's working"

"I want to go home"

"You will; soon"

She dissapears back into the corridor, and I sip the tea slowly and eventually fall asleep.

What happened next . . .

I can't actually remember coming round. I know that I would have been in a recovery room first, but actually the next thing I can remember, after being put under, is being wheeled back into the ward. I think I must have been high as a kite. I have a blurry vision of Clare; she's told me that I kept pressing my PCA button and passing out, waking up . . . . Saying something and then pressing my PCA button and passing out, waking up . . . . Saying something and then pressing my PCA button and passing out, waking up . . . . Saying something and then . . .

I can vaguely remember some of this. Clare says I was "off my head"

I was making so little sense that eventually Clare decided to go home and let me sleep it off.

That night I actually slept on and off, waking to press the button and acquire more morphine. A surreal night of strange thoughts and images.

Wednesday morning came, and after breakfast (cold ready-brek), Clare came in and she was told quite smartly by one of the nursing staff that she shouldn't be there.

Poor Clare, had been under a lot of pressure, and this was the last straw. I think it is easy to forget, when you are the one on the "pointy end" of the experience, that there is inevitable stress on the people around you and supporting you.

In fact through conversations with Clare I have realised that in many ways you can drag people around you down without being aware of it. I'm sorry to have done that.

That day there were a lot of visitors and a lot of texts. A text when you are in hospital can make a big difference. It is a bridge and a connection back to your own life, and people. Small but hugely important.

The day passed and I was very tired by the time last visitor left, and the ward lights dimmed to night mode. Despite my tiredness I did not sleep very well at all. A weird bed, a leaking drip, a restless mind.

The experience of surgery really takes it out of you, and it takes longer than I want to heal up. This is not some mere haircut, this is a major piece of surgery.

Until tomorrow.

THE LONG NIGHT OF THE SOUL

I had expected the night before surgery to be long and tortured, I had been called in early for a blood tranfusion but whilst we were there; the blood was not. It was going to be an eight hour infusion and the blood did not arrive until midnight. But once I was connected up I was surprised that whilst I did not sleep very easily (the infusion not allowing me to get into a comfortable position) calmness came quite easily and was not infected by spectres and Heeby-Jeebies.

I found that the next morning became progressively more frightening as the process unfurled itself. Interestingly I found that I became slightly less able to cope when Clare was there. The familiarity and love being so close, but unable to "save" me.

The anaesthatist came to talk to me, asking many questions:

Name?
DOB?
Allergies?
Any loose teeth?
Medical history?
Previous surgerey?

Etc, a fairly long set of questions. Then it was a case of explaining anesthesia and post op pain relief. I opted for PCA (Patient Controlled Anaesthetic - or was it analgesia?) for after the op. By this time I was getting some bad nerves and was sweating considerably.

The surgeon arrived, wearing a bow tie and introduced himself as "Shanks"

I was in what my Dad's generation would have called "a terrible funk".

I was first on the list so with hardly any time to orientate or re-orientate I was off on the journey down into the dark.

There was a kind of waiting room that was just like a car-park. Here there were a number of people lying on beds, presumably in a state of panic as well, maybe not? I was blind with fear anyway.

I tried to remember the experience of hypnotherapy and started to breath deeply and think of Dad. A woman loomed over and introduced herself as "mickey" and she informed me that we would be walking the last bit. So I got off the bed and walked with her.

She said I would forget her, that everyone does. But I have remembered. She was called Micky and she had red hair.

Next I was in the anesthetic room. A needle was put in the back of my hand and ....