Pants, pumping and happiness.

A sample from the goody bag.

“. . . and what kind of stoma do you have?”

He’s a big man, very big. He’s standing next to a panoramic display of pouches, flanges, creams, powders, tubes, and boxes.

“Ileostomy” I answer smartly; sure of my answer.

“Come this way” he threads his way with surprising speed and agility through the milling throng of blue rinses, and sports jackets to another all encompassing display. He picks up a pouch and cradles it before me with true zeal.

“Now this. . .” he holds it up as if presenting a bottle of vintage wine “ . . . this features the AF300; the most advanced air filter on the market; filtering double the amount of air per unit of time than our nearest competitor. It’s also the pouch with the thinnest profile available, and features a unique closure unaffected by water. . .”

On the back of his rather hairy hand he has a flange taped, and is more than able, and certainly pleased to demonstrate the unique locking system. This man believes!

A woman enters the hall, lets call her Harmony, and makes a sonorous declamation “The floral display demonstration will start in two minutes in the aerobics studio”

We balance our plastic beakers of mulled wine on our Styrofoam plates full of sandwiches, volauvents and crisps as Clare and I survey the building. One of the main reasons I have accepted this courteous invitation is to get a look inside. It’s a Victorian pumping station. It used to contain two massive beam engines. It used to look something like this but now it’s the backdrop to wedding parties and the like. (Probably not funerals I don’t suppose.) Today it’s hosting a “day out” for people with stomas to enjoy “The Funny Footmen”, floral arrangment demonstrations and a wide range of surgical products for the ostomate, and a free lunch (Yes, I know).

After registering (Having your name ticked) and being given a goody bag (red with tube of mysterious cream, a biro, some post it notes, some sample fresh wipes, and two adhesive discs with an unknown purpose) we look around the room. I’m 54, but I’m quite surprised to see that I can’t see anyone my kind of age. If only I had a the uniform sweater with Pringle written on it

Climbing the thin winding stairway passage (hmm) to the top floor we are greeted by another floor full of v necked sweaters and sensible shoes grazing to the sound of a violin and a guitar.

There are various displays around the room, and I spot one that has a leaflet about reversal surgery. I hover near the table looking at the information on offer. A woman approaches me. I mention that I might be having reversal surgery sometime next year.

“ . . . and what kind of Stoma do you have?”

“Ileostomy” I say, quick as a flash.

“Oh. . . well this a colostomy organisation”

“ah . . . well it’s the reversal thing I’m interested in”

“Different with a colostomy”

“Oh.” I feel slightly odd about this conversation. “Oh well. . . “

“Not the same at all.” she fixes me with a beady eye. “Take a leaflet – if you’d really like one”

I do, Clare stows it away in her large carpet bag.

Moving on to a display of a local suppliers, a friendly woman approaches and asks if I’m happy with my suppliers. Just to clarify; there is quite a complex relationship between manufacturer, supplier, GP and one’s self. Suppliers will supply you with anything from any manufacturer, but they have to liaise with your GP via a series of prescriptions etc. I’m telling her that I’m happy with my supplier when Harmony makes another declamation:

“The floral display demonstration is scheduled to take place in the aerobics studio, but if anyone has difficulty with stairs we will move it to conference suite 6. Please come and speak to myself about this”

Then without breaking rhythm she moves towards the guitar and violin and starts to sing in a very loud operatic kind of way. The woman I was talking to is open mouthed.

“I didn’t know she could sing. . . “ The woman from the supply company is clearly dumbfounded by this transformational moment.

There’s a display of underwear, and I nudge Clare excitedly. Not that these are sheer and naughty; well cut and sturdy is nearer the mark. You, dear reader, may be in the enviable position of casually picking from a plethora of pant designs in your local shopping mall. Not so for us “baggers”

At the risk of getting into too much detail the high wasters I’ve got are good at the top end and keep everything under control. But down below . . . they aren’t – how shall I put this- they aren’t designed for a man, unless you’re a snooker player.

These look properly designed and cut. The sales rep brandishes a truncated torso model wearing the pants and encourages me to put my hand inside the pants to feel the hold they provide. I am slightly hesitant about this and slip my hand inside the pants.

“No; right down. . . go on! Right down to the crotch!” he exhorts me. They are very tight, well made. No labels and very smooth seams. In fact now that I have my hand in there I realise these are really quite superior.

“Wow! I’ll take some of these” I’m truly transported.

A couple of forms filled out and I’m looking forward to a delivery of sample pants.

It was exactly a year ago today that I went into hospital and had the surgery. The year since has taught me not to be scared and that happiness is a good pair of pants.

There is more

Summer 2010, Tenby, Wales

It was the 29th of November last year when I started this Blog. I was fearful of the future, robbed of the present, hating the past. In desperate need of some way to escape from the trap that I was in.

My problem, my fear, was that the only way out meant I had to submit psychologically and physically. Notice the word submit. In my heart I knew I was beaten by a disease that seemed perfectly formed to distress me by attacking the very areas in which I have always been vulnerable.

The medical institution as I saw it: monolithic soulless architecture, inhabited by people I could not relate to, and who had the power to punish, to humiliate, to violate me; all of this reminded me of going to boarding school at the age of 7.

My disease, as it seemed, making me disgusting and robbing me of dignity, centred on a social taboo, turning me back into a baby. Reducing me to a weak and repulsive middle-aged man with little future.

The only “cure” available involved, disfiguring and medieval brutality, usually reserved for the scaffold, thinly disguised by a word that hid the truth. Not a colectomy really, I was to be disembowelled. Literally.

My family, my doctors, my friends wondered why I didn’t just head for the operating theatre and get on with it. I was scared, lonely, angry, and, frankly, stroking the cat of death.

That was a year ago. A year ago to this very day I posted a video on you tube to try and laugh in the face of death.

What I did not know was that I could get through it all, and that even at the bottom of the shittiest bucket there is something good if you are prepared to look for it.

I’m coming up to the year mark since the operation. I have learned a lot about myself and about others who have kindly and with insight commented on this blog. I've also grown through the life experiences of others that I have followed. Take a gander at the blog roll and read how people have strength and humour and intelligence, and how they deal with the problems they have.

I also found out how much my life impacted on my family and started to understand how difficult it has been for them as well.

And . . .if you too have to face the operation, I can only say that my experience taught me that the fear and loathing was worse than the reality. There is a future and it is full of possibility and colour.

Ahem . . .  I thank you

(Steps down from soap box and packs up; heads away across the park)

Seasoning

Click to enlarge

Picture this

Previously on "The Knife You See":

As a result of having Ulcerative Colitis for 13 years, and despite medications a plenty, I faced the prospect of surgery almost exactly a year ago. In order to deal with this psychologically and to get some sense of control and calm I went to see a Hypnotherapist.

I found it so useful, that I decided to pass it on by learning to be a hypnotherapist myself. . .

I wonder if you can imagine the scenario, we are in one of those rather corporate rooms in the depths of a hotel. (Should that be an hotel?). The yellow-brown carpet with little crawly patterns made of small crosses in black stretch across the floor, the wood and chrome armed chairs with a purple seat and back, the whiteboard, the arc of chairs.

Perhaps, you can you see it?

Can you hear the air conditioning? The distant but constant traffic?  The clink of iced water in the glasses? The soft scribbling noise of biro on pad? Can you hear all that?

On the whiteboard the letters “IBS” are scrawled in black sitting like the dead body of a spider in the middle of a mind map.

We’ve been talking shit for a while now, running through the symptoms, the possible causes, diet, exercise, self esteem, confidence . .

. . .     U.C. is NOT IBS

I have subdued the impulse to spill my guts. Mention has not been made of Ulcerative Colitis but there’s been one mention of it’s evil twin Crohn’s disease. I have resisted the impulse to yak on about the difference between IBS (Syndrome) and IBD (Disease). Now we have been put into small groups to practice a new script.

This one is what’s called a guided imagery script. The Hypnotherapist takes you on an imaginary journey, and the things within that journey are actually encoded ideas that will influence the unconscious mind.  And that in turn can influence the conscious mind and the body.

Oh! I have just noticed that UnConscious mind and UC might have something in common. . . . I have thought for a long time that the gut might be the seat of a primal and brooding intelligence.

Anyway,  the script is good, I’m enjoying it and I’m getting waves of comfort and familiarity . . . . Yes familiarity is the word, the metaphor of a river, the idea of a steady constant balanced flow. That's the embedded idea.

Imagine the scene: Beautiful trees, a stream going through some woods, the stream clear and clean and sparkling. You and nature are in harmony. You take on the qualities of the stream. It’s good and it calms you down.

I’ve heard something similar before. A year ago. Hearing echoes of an old song reiterated in a new song. I like it. It comforts me.

But there's a beef for me. The thing is,  with U.C. it is really good to be calm and all that, but I'm not sure that it's going to sort out your "flow".

It'll help your head, but I think your gut will still have it's own particular problem. That's why it's an IBD not an IBS.

Curious to experience a thing from the other side. In my training so far I have had quite a few instances where I remember the conversations or hypnotic techniques of my Hypnotherapist.

Personally, I found this type of metaphor very useful. Even if it did not have the exact outcome I desired (like curing my guttering entrails) I would leave the hypnotherapy feeling much calmer and more in control. That in itself was worth a lot.

So there's a lot of questions and possibilities there.

The spectre of the psychosomatic view of U.C., the difference between IBS and IBD, the idea that whether U.C. is psychosomatic or not there is still value and comfort in having a calm mind. On balance I think hypnotherapy is a great tool (both from my experience and current training), and possibly you could you could achieve similar levels of calm through other activities. Meditation, playing a musical instrument, going walking, dancing . . . etc

Just a small point though, if you do use hypnotherapy make sure your hypnotherapist chooses their metaphors carefully; my first encounter with this analogy was a bit disastrous; the last thing I wanted was flow!

I wanted a dam.

Things are progressing well, by the way, I have hypnotised quite a few different people now, using a number of different "inductions". We've even covered hand levitation. Looking forward to full body levitation shortly :)

Plumbing for beginners.

They’ve made a real effort in here, none of those late 50’s early 60’s institutional colours, plastic seats, and the feeling of being a bad boy at school waiting for the cane.

Instead the ceiling arcs gracefully across a space that could be an airport or a university or a huge restaurant. There are TV’s displaying hospital information and BBC news, tropical trees in large pots, brushed steel handrails that I think have been nicked from Waterstone’s and Scandinavian style wooden floors. There’s even a string quartet playing live.

It’s a really good effort to make you feel less under threat. The receptionist was a bit of a Snow Queen; but to be fair she was efficient and she was doing her job. You can’t have everything can you.

I’m called through into a consulting room by the Stoma specialist – last seen when I had the operation to disembowel me.

But today I feel no fear, and I do not fear the future. I have been through enough to realise that I will survive and that life can be even better. So I feel absolutely OK.

Such a difference to this time a year ago when I was chronically ill and actually in danger of slipping off the disc of existence. I can’t believe how much I have changed. I am quite different.
  
She talks me through the reconstruction operation. You may know all this already but in case you don’t here’s the plan (There are some gory bits so look away if you don’t want to encounter that)

Imagine a hosepipe, and imagine taking half an arm’s length and bending it into a U shape. Now imagine slitting the pipe along the sides that touch. The edges could now be joined together to make something a bit like a long sporran. Now imagine all that again but this time it is my small gut.

They can do that and make a sporran or pouch out a part of my small gut. The bottom part of that is attached to your out-pipe. The top part is more complicated.

That part is not fully severed from the remainder of the small gut but kind of half sliced, and the pipe bent in two. Thus waste can escape out of the sliced section. This is turned into a new stoma with the route down and out temporarily unavailable.

Then it’s a matter of waiting for a few months for the down and out part to heal up while still being an “ostopath”.

Once it’s all healed up (and I’ve been to Glastonbury to feel the vibe) they do a few tests – nothing compared to the horrors of the past, and then, if all is OK, Its simply a matter of sewing up the half cut gut and . . .

 . . . .You have full 100 mb / sec broadband connection.

So not this Christmas – next Christmas I could be on the road back home.

It’s a long journey that I never wanted to take, but along the way I have learned I can take any shit and still survive.

I remain.

How en trancing.

look into my eyes

“Corpus insurance, Kelly speaking, how may I help you?

“Ah hello, I’m trying to get a quote for some public liability cover . . . I’m studying Hypnotherapy and we have to get public liability insurance . . .”

“Hypnotherapy . . . remind me what that is”

“Well. . . the client sits in a chair and I talk to them . . . relax them until they are very deeply . . . relaxed and then –um offer them therapeutic suggestions”

“They’re asleep”

“No, they’re in a trance”

“A trance.”

“Yes”

“Hang on I’m just going to run this one past my supervisor.”

“Ok”

The sound of music, up beat, a bit brassy. Time passes and I stare without focus at my computer and go into a bit of a dream. I’m brought suddenly out of my reverie by an abrupt end to the music and Kelly’s rather loud voice scything its way along the line. The words strung together with the rat-a-rat of a machine gun. Intoned like an incantation.

“OK just a few questions, but first I’m obliged to inform you that you must answer all questions truthfully and accurately to the best of your knowledge, some calls are recorded for training purposes, and in accepting this you agree to the receipt of occasional promotional material. Is that OK?”

“I just want a quote really”

“I know I have to ask you these questions to work out a quote for you”

“OK”

“Will you be using heat?”

“What? Er No”

“Working on a stage?”

“No it’s not like that”

“Using any medicinal substances?”

“No”

“Radioactive materials?”

“No – not at all”

“Strobe Lights?”

“No”

“Music at a high volume?”

“No – no music – its not like tat at all, they are sitting in a chair in my house or maybe their house, I just talk to them and . . .”

“They’re asleep right?”

“No they’re in a trance state. . . it’s . . .”

“What I’m going to do is take your number and get back to you on this one, what’s your landline number?”

Well, she said she would ring me back later that day. So far no call, but that’s all right because I found another company – Holistic Insurance.
No problem, completely understood. I’m now insured.

As part of the course I have to find practice subjects and work with them – fly solo as it were, and my first flight is tomorrow. I’ll tell you how it goes. . .

The world turns, and sun rises and falls again. . .

A friend of mine has volunteered to be a practice subject, and with characteristic punctuality he hammers my door quite forcefully and rings the door bell for good measure. I open the door and let him in.

Chit chat first it’s interesting to talk to him. Very. But perhaps I’m putting off the moment of my solo flight. So soon it's time to get on with it.

The weirdest bit is the transition from talking normally to starting the induction. It has to be a smooth cross fade. Not some ham fisted yank of the faders. I decide to go for the explicit but understated approach.

He closes his eyes and I hope his extremely busy mind relaxes. I think it does. I’m talking through a series of manoeuvres that I have remembered. Hoping I’m not missing something out.

Of course it’s a little odd at first, but soon it feels (for me at least) a good deal better. But I know I’m not giving as much space as I have done in practice sessions.

30 minutes later he emerges from the experience. He says he feels more relaxed. That’s good. He’s also been analysing and decoding what I have said - I expected no less from him. But that means that the conscious mind has been in play, and that of course blocks access to the unconscious mind. I am frustrated with myself for that. On the other hand it’s exactly what happened to me and I really wanted and needed some help. So maybe its OK.

Next time . . .  I will get better at this.

Hypnotherapy

A while ago I decided to train as a Hypnotherapist, as described in my previous post “Does this sound weird?

This was for two reasons:

1) It helped me deal with the sharp steel and porcelain of the medical establishment, offering a refuge, and a way to cultivate tools in my own mind to encounter the challenge.

2) I had a great desire to learn and practice something new and useful. I had been involved with film and video production for years, and I love that still. but I feel - as we surely all do - that there are many other areas and experiences to be had. In fact I have lived many of these already. But I was searching for something new.

So at last the time has come. Last Saturday I started on the journey. It’s a really fascinating experience both to be in a hypnotic trance and to put others into one. I think there is a great overlap here with meditation and some of the issues discussed in the blog “Mindfulness and Mortality” by Gloriamundi, which, as you can see from my blogroll (to the right of the screen), I’m following.

I had been put into a trance before, but not in a circumstance in which I analysed the trance itself. On the course we were all put into a trance using an induction that described a journey through a landscape. You may have experienced similar things in areas such as theatre training.

Anyway, afterwards we were asked how long this took, and my guess was four minutes (logically not really possible – but I think I was still slightly en-tranced) the truth was it was more than twenty minutes. I could hardly believe this.

It was also so odd to talk to someone, and watch them first of all relax, as you might expect, but then to start slumping slightly forwards and to one side, see their skin slacken, and the jaw become loose. Of course we are a self selecting group with good reasons to be compliant, but there was more going on than that.

Now I have to find about five people to do a relaxation induction with before the next session. At the moment that's all we are allowed to do. That is quite a daunting task when you think of it. I think it will be easier to work with people who are known to me, but not really close friends and family, as the fear is that they will just laugh at me because they know me too well. I think a certain distance would be helpful.

There were many other fascinating insights and experiences, and many more to come. I will keep you posted.

So that’s the way it is with me. Just wanted to keep you up to date.

Thanks as well to all the people who have donated so far to the Crohn’s & Colitis UK charity. (See the widget- top right)

I remain

How it is now

How beautiful a thread this existence weaves,
Getting out of the car on Chestnut Grove.
I had imagined it to be high noon,
Stitching time into my hopeful step.

But on the pavement conkers and brown leaves
(I Love this walk, these shops, these dreams).
I whisper a broken tune,
Unconscious but a living thread.

It’s later than I thought, but
While I Breathe and smile this is my world.
Fate’s needle will have to wait;
My final twist is not yet curled

What’s it like to live with someone with U.C.?

Love forté

So what’s it like to be the partner of someone with a chronic disease?

It occurred to me that this blog has described my own journey, but has not addressed the experience from another’s point of view. Especially someone who has walked beside me every step of the journey.

To stand in a strong wind you need balance not strength. In my life much (most) of my balance comes from Clare.

I’m sure that for many of us that live with a disease there is someone who shares that journey with us.

We’ve been away camping in Wales. Walking on the beach, cooking on the single burner, looking at the stars through crystal clear skies. Our boys now men.

It’s been a long time since I could enjoy camping out. We used to a lot, but the constant trips to the toilet block, and the stumbling through a tangle of sheeting and guy-ropes in the small hours had made it rather difficult. This is no longer an issue. So “woo hooo!” we’re camping.

One night outside our tent I recorded a conversation with Clare and we talked shit; Josh made some jokes and I faddled with my recording device. We take up the recording just as I have got it all sorted out:

Clare: . . . . .Have you ditched that? Because I think that laughter could be quite useful?

Me: Yes indeed. That’s true.

Clare: So you’ve just ditched that and you’re editing already.

Me: Alright. . . OK.

Clare: I think that’s bad actually. Because you’re editing as you go along.

Me: I am aren’t I?

Clare: Mmm, yeah there was a lot of laughter . . . The question was when did it all start. And God! – it’s been going on forever.

Me: Has it?

Clare: Well a very long time.

Me: ‘97.

Clare: Yeah a long time.

I don’t remember a beginning but it became very apparent after an amount of time – and I can’t remember how much time it was - that you were quite ill. And it kind of affected everyone else’s lives.

You were in denial and everyone else – by which I mean Me and Josh and Gabriel -were looking on and thinking “actually this is pretty crap”.

I don’t know how long it is . . . maybe - 10 years is too much . . . between 10 and 5 years, I don’t know how long . . . but it’s been difficult.

Me: Of course it’s been difficult . . . What would you say have been the most difficult aspects?

Clare: Well it’s only been really difficult when you try and step outside your normal everyday life and – I suppose have a holiday – like going camping or traveling to Italy or going to New York, or deciding to go on the London Eye. You know whenever we’ve decided to do something as a leisure activity it would just be really difficult because you couldn’t relax into the event.

But we’d just go along as normal and try and plan things, like days out and doing this and doing that, but whatever we had planned suddenly when we were on the day out it would be obvious that it couldn’t go on as normal because we either had to get there very fast or we had to stop and be thinking about where a bloody loo was. (Laughs) ha, yes so . . . days out were full of tension and spoilt. (Laughs) Everything revolved round shit and getting to the loo.

(Laughter from both)

Are you still recording now?

Me: Yes

Clare: Oh good - good. But it wasn’t something that could be complained about because of course you were ill and we just had to accommodate you know – The Illness. So privately in my head I was thinking “God this is really annoying”. You know “it’s not fair” . . . but I couldn’t really express that because you had to deal with your own emergency.

(I laugh)

So it was just like dealing with someone with a life in emergency.

Me: I used to hate it when we’d be driving along in the camper van and I was realising we had to stop, you know. It was very embarrassing.

Clare: Just get out and deal with it behind the van – the annoying thing was that you were embarrassed. That was actually annoying. Because we knew what the problem was and we just thought get on with it and have your difficult moment.

I was actually pissed off with your own - your hang ups about . . .

Me: . . .What crapping in public?

Clare: Yeah.

Me: Thanks. (Laughs) It’s a fair enough hang up to have isn’t it?

Clare: Well. . . yeah but. . .having established that that was the big problem I suppose you got a double whammy. Not only were you shitting your pants but also it was an embarrassing thing to do.

(Both laugh)

Me: Yeah?

Clare: Yes (laughing) but it was quite a burden for everyone else to deal with. Yes it’s embarrassing because someone in your family is about to shit themselves, but also they have got a huge hang up about the fact they are going to shit themselves.

(Explosive laughter)

Me: I think you might find that I was with most of the population here . . .

Clare: I think you had a huge problem with anything lavatorial. I do think it was a double hang up. I mean you only have to look at your grandmother to see that there’s always been a big issue with the lavatorial. So I was dealing with a double hang up.

Me: So; are you saying then that you subscribe to the psychosomatic view of the ulcerative colitis?

Clare: Oh No! Not at all. No. No No No. I’m not denying the condition you found yourself in. And of course it was very embarrassing and very difficult to deal with. No I wasn’t straying on to that at all.

Me: No?

Clare: No; what I’m saying is that you found yourself with this very difficult condition to do with your bowels BUT layered on top of that was your own family’s difficulty with shit and bowels and . . . I think you had layer upon layer of difficulty.

Me: A kind of a layer cake . . .

Clare: Yes. You had difficult periods and periods of remission I suppose. It wasn’t dealt with for a very long time. You avoided going to doctors

Me: Well I don’t think I did avoid them, I have to object, I don’t think I did avoid going to the doctor.

Clare: Well . . .

Me: I didn’t avoid doctors at all.

Clare: Well there was a period where you were obviously very ill and nothing was being done about it. And I know there was a time when I spoke with Josh and Gabriel and their opinion was “Why the bloody hell doesn’t he just go ahead with the surgery that’s been recommended?” Because it’s really difficult for everybody.

Difficult for you; but also difficult for the rest of us. I just think we got to a point where we were then dealing with another layer in the whole thing which was your huge fear of surgery; which was completely understandable . . . we could understand that, but you had this huge block.

Everybody: i.e. me, the surgeon, Josh and Gabriel, could see that there was something very obvious that needed to be done to help you but were resisting it. We just all thought why don’t you just go ahead with it – but it wasn’t for us to say.

In addition to the problem of illness, and the problem with your own sort of family hang ups with shit and stuff, there was another layer which was “being told what to do” and going ahead and agreeing to surgery. So it was just layer upon layer of hang ups really.

Me: I feel when I look back on it that what was normal had shifted – we couldn’t go camping, we couldn’t do this and we couldn’t do that.

Clare: Yeah. I think it had. Just lots of things we wouldn’t consider doing. I think sometimes I pushed and hoped that we could do those things and we did because I pushed.

We just didn’t do much. I mean I think the last straw was the Italian holiday where we thought were going to have a nice holiday in Italy, and in fact Josh and Gabriel and I did have a nice holiday. But you were completely lame – you couldn’t walk, you couldn’t go anywhere, you completely missed out. I‘m sure you did your own stuff but . . . but really it was like three of us doing one holiday and you doing your own thing.

Me: Hmm. True yeah. I had a very different experience of . . . (laughs)

Clare: I remember deciding to go on the London Eye and we couldn’t bloody walk there fast enough because we had to get there by a particular time. And the whole walk from St Pancras to the London Eye was affected by whether you could get to a loo.

The whole thing was suddenly this sort of really stressful route march. Then I ended up sort of feeling guilty because I’d planned it, and organised it, and we needed to be there by a certain time. I just thought I wish I hadn’t bothered and I didn’t plan anything like that again.

Me: Hmm. Sorry.

Clare: I suppose I can say it now because we’re on the other side; but beforehand I didn’t like to say anything like this because it just seemed really selfish. To complain that you couldn’t plan a particular day out or a particular holiday because you were in a far worse condition, and that was the thing that really sort of ruled what went on.

So I didn’t feel in a position to say “This is bloody annoying” Because my discomfort or irritation at something not happening was fairly small compared to the reality that you were physically incapable of doing the things that we wanted to do together.

Me: I can’t believe the place that we got to, to be honest.

Clare: I felt I put myself completely in the back seat. I knew that you were really concerned about yourself but in way I could not worry about that because you were there dealing with the pretty frightening prospect of having surgery and having really drastic emergency experiences.

I thought there’s no point in me worrying about that because I’m sure you’re doing lots of worrying about that yourself. So the role I felt I was playing was I was actually – I think I was really concerned about what Josh and Gabriel were thinking. Because it could have been – it was pretty momentous for them, and you were very ill and of course you know – you could have died .

So I felt a bit straddled between worrying about them and there was that sort of worry about you.

For myself? . . . don’t know I just . . . I would have dealt with what ever happened. Because whatever happened . . . I mean you know if you died you would have died, you know. . . and I wouldn’t worry about you then because you’d be dead and you wouldn’t be worrying. I mean I knew in theory you’d be pissed off about that but you’d be dead so it wouldn’t matter.

Me: (Laughs) You can’t fault that logic.

Clare: I blotted myself out and if you died . . . . pfff . . I sort of you know – in a rather brutal way I didn’t care because I’d then – I suppose I would then come back into the equation and I would have worried about me.

I think in that sort of situation you have to have to sort of cut to the chase. I think I’ve done a lot of that for the last few years. Just not worried about what I think you know. The fall out might be about to hit us. I don’t know. Cos I think there’s a lot of shit going on you know. I’ve spent quite a lot of time over the last few years not thinking about myself. Putting myself away.

Me: I think nobody can possibly doubt that.

Clare: So it might be . . . so there might be. . . I sometimes wonder if there might be . . . you know actually I’m fed up of feeling like this.

Me: Well that would be quite understandable. How would you advise somebody else if they found themselves in your situation? Is there anything you can say to somebody in that situation?

Clare: I don’t think I would say anything, I couldn’t at this point. In an interview like this . . .if somebody was in the same situation and they wanted to talk to me then I could have a conversation. But I would have to be responding to what somebody else was saying. I wouldn’t give advice or say anything. I wouldn’t say anything into the blank out-there-ness.”

Posted with love.

Does this sound weird?

A different view.
(Pinhole photo of New York - 2007)

I have a feeling this may sound a little cranky, I hope not, but I am aware that it might.

Readers of this blog may have noticed that I have mentioned Hypnotherapy a few times, and I have said how I found it very useful in dealing with anxiety, stress and fear.

I thought I might try and make a difference in other people's lives rather than just describing my own journey.

OK - so here's the odd bit:

I have enrolled on a course to become a qualified Hypnotherapist. The course will start in September.

Can you see me in that role? Time will tell.

I've also done another thing which is to set up a "Just Giving" page which you can access by clicking at the link above and to the right. Any money given will go straight into the coffers of Chron's And Colitis UK. A charity to help people with Chron's and Colitis.

It would be great if you could have a look.

Right - I won't mention it again

I remain

I tell the tale

Much better now I must say.

At first I thought I was going to die,
As my blood ran down the Loo;
Asking the obvious question “Why
Am I crapping blood not poo?”

I thought I’d have to say goodbye
To my family and my chums.
To perish, how undignified,
At the mercy of my bum

There must be something of this pain
Written in some book,
So in the library I tried to name
This method of the reaper’s hook.

The doctor prescribed some pretty pills
With names that I could not pronounce.
I’m afraid they did not cure my ills,
Stem the flow, or stop the spills.

So soon it sadly came to pass
That I had a great indignity.
They put a camera up my arse;
The dreadful colonoscopy

Maybe acupuncture
Could give me some relief?
Use the force of pins, and chi
To minimise my grief.

Nothing seemed to do the trick,
From enemas to rabbits ears.
I went from ill to really sick
Over thirteen really sticky years.

I knew the precise location
Of every toilet in my town,
But often in some unknown station
I became the crying clown

Strange how this thing can change your life,
Raising stress, and causing strife;
Make you wary of adventure
(And travel such a risky venture)

Six hours of Infliximab on a drip,
Would cure my strangely painful knees,
But never seemed to have the kick,
To cast out this crap disease.

“In my end is my beginning” says the poet;
And it turned out so to be.
I was eventually disemboweled.
(They prefer the word "Colectomy")

I'm getting a bit puffed out with the fine detail in this rather crass ode, but I shall return and pick away at it as inspiration suggests and time allows.

I have to go to sleep now.

Back to the start

Bangkok 1988

Where does an illness start? In your genes? In your own lifetime? In your experiences? In your environment? It’s hard to know sometimes.

It’s 2010, Nottingham. I’m 53, white middle class, and mediocre.

I’m getting out of my car, making sure I have my pad of paper and a pen . . . glasses as well – yes I’ve got them - that’s good. I’m at my doctor’s. I’ve come to read my medical notes.

I am met by a wise looking woman who is very polite and professional. She is the practice manager. She asks me to sign in, and reminds me that my squiggle on the paper binds me to discretion; that I will not reveal names, places, and details of anything I may see or hear. So in what follows I haven’t.

I Squiggle; I accept.

She shows me to a computer and runs swiftly through the MS-DOS style screen that contains my notes. It seems that the electronic notes only go back to 2000. I’m looking for something way back in 1988.

With remarkable speed she presents me with a tattered and browning wedge of notes that go right back into my childhood. Medical records in thick brown manila, fading fountain pen script, letters written on manual typewriters, actual documents that go back as far as the 1960’s.

There’s a typewritten letter from a child psychologist that documents my meeting with her, the paper old like a leaf, but the typewriter impression still fresh. This hasn’t seen much light since 1965; The red letterhead at the top still sharp.

I shouldn’t really dwell too much on this letter, as it’s not what I’ve come to find out about. However it describes me as a fair-haired child, reasonable verbal intelligence, problems with writing, and as a consequence having “behavioural problems” due my frustrations at school. Dyslexic.

Aha! What’s this? I find a card that records a visit to my doctor. At the time I am 36. Many years ago, before I had guts ache.

I’m back in 1988, a small town in the East of England. A sunny spring morning. The Stranglers “All Day And All Of The Night” can be heard leaking from a tinny radio. Across the wooded park I can see the doctor’s. Never been there before. Bit nervous.

I always felt guilty visiting doctors. Never wanted to waste their time on my irrelevant problems. I’ve been brought up not to waste a doctor’s time unless it’s a last resort because there are many people with real problems.

It’s a Victorian red brick house, with a bit of a fake Doric column around the door. Inside a waiting room with a lino floor that had that smell and the usual selection of out of date magazines; dog-eared by a thousand fearful fingers and thumbs.

A cordoned off play area contained a garishly coloured collection of plastic toys. (Nowadays it would be some kind of infection risk I’m sure)

It was my turn and I entered the unknown; the doctor’s room. I had not been to a doctor for donkey’s years. He sat behind his desk and blinked at me from behind his glasses. White hair, a slightly red face. When he spoke he had a charming southern Irish accent.

“So what seems to be the Trouble?”

I started to explain, rather hesitantly, something that I could not really describe very well.

“I’ve got this feeling . . . it’s like a very mild stitch almost, but not even that bad. . . It’s just an odd feeling . . . doesn’t hurt at all. I just haven’t had it before.”

“And where are you feeling that?”

“Here” I pointed to the left of my navel, on the side. The soft bit.

“And you’ve not had this before?”

“No”

“Eating alright? Not doing anything new and strenuous? No reason you can think of?”

“No”

“And are you going to the toilet often?”

“No . . . not really just the usual you know”

Why do doctors always want to ask you about your backside or your genitals – never about your fingers or your feet or your face?

“Work?”

“Yes, I work in an Arts Centre, film and video stuff . . . some teaching . . .”

“And do you get worried much - stressed?”

“No – not really”

He pushed the glasses up his forehead, rubbed his eyes. Then took his hands away so the glasses dropped back into position. He blinked at me again.

“You know what I think?”

“No – I don’t know what you think.”

“I think you might be stressed, this might be stress related: psychosomatic.”

“Oh – right. . . It’s just that I haven’t had this sensation before. . .”

“Now. . . What I’m going to do is suggest that if it doesn’t go away in a couple of weeks that you come back and see me. But like I say – I’m pretty certain it’s psychosomatic.”

“OK – I will”

And I left feeling a better.

But it didn’t go away, so I went back a couple of weeks later. This time he said he would refer me to a gut specialist. I pointed out that I was going on a long trip in a few weeks time and he took the dates I would be away.

“And where will you be going?”

“Thailand, Hong Kong, China, Coming back through Russia; Trans-Siberian”

“Well that sounds great. You enjoy it – Now you’ll get a letter inviting you for an appointment. I’ll tell them when you are away. OK?”

“OK”

“And in the meantime if you feel it deteriorating or anything go to your chemist and get some “Fybogel”. It’s going to pad out your gut a bit and it may have a small laxative effect.”

“OK . . .”

And I left feeling a bit better.

We went on the trip. The first time Clare or I had ever been in a aeroplane, went on a trek in Thailand, got married in Hong Kong, went by train to Beijing, crossed Mongolia, hooked up with the Trans-Siberian, flew home from Moscow.

We had a great wedding party when we got home. It was great to have done the journey, and it was great to be back.

There were two letters waiting for me. One inviting for an appointment, and one expressing disappointment that I hadn’t turned up. Another date was offered but I was unable to go to that as I had work in Newcastle. The record shows that I phoned to say so. Soon I received a letter telling me I would not be offered any more appointments as I had wasted the consultants time and that it wasn’t fair to other patients.

Today, 22 years later I read the letter that the consultant wrote to my doctor. He was apoplectic with rage, and it really comes across in his writing. Really angry that I had not turned up.

I am sorry to read the letter.

“This man” He wrote “ seems to think the service is designed for his convenience . . .”

I am feeling so bad reading this letter.

“I think if I was to meet this man I would not be able to view the case objectively” he wrote.

How annoying to realise that even at this very early date I was in conflict with a consultant. It was the last thing I wanted. I thought I was trying to keep them informed, trying to communicate.

I am very presently aware of his anger – I have wasted his time, and deprived other patients of his attention. I’m really sorry and shockingly surprised.

Dear Doctor Goodman (fake name), if you ever read this I apologise. I certainly never meant to anger you or waste your time.

However perhaps you too had some fault. Maybe a little arrogant; in reading your letter the words you use assume that I will do as you say. That I am an underling. You consider yourself above me, and you were not, nor I above you.

Back to 1988: the odd feeling? It had gone away. Nothing to worry about at all. It was Psychosomatic after all.

On the TV “500 Miles” by The Proclaimers, looking like two psychotic Joe 90’s. I bought the CD.

I don’t know if this was the first whisper of U.C. but many years later when it was clear and present it was in the exact same spot.

F.Q.A. No. 1

Just asking

Frequently Questioned Answers

I have been thinking back on the thirteen year journey from discovering I had UC through the flare ups, under the knife, and out the other side with a stoma.

Anyone on such a journey will, on occasion, come across certain firmly put forward "answers" or assertions that will cause you to think "And yet I wonder?". These answers can be gathered into subject areas, and often start with phrases like "You should . . . " or "Yes but . . . ."

In this, the first of occasional posts, I question a random selection of "answers" that have been presented to me.

1) Answer: U.C. is psychosomatic.

Questions:

If it is psychosomatic, why can’t U.C. be cured using techniques such as CBT, Psychiatry, Counseling?


If it is psychosomatic, is it always a certain personality type that gets U.C.?

If it psychosomatic, where does this put theories that U.C. may have a genetic component?

Personally I had the psychosomatic theory served at me several times by professionals, and other very clever people. I did, and do, often question whether there is a connection between the mind and one’s health.

In fact I am fairly certain there is a link between physical well being and the mind, but I can’t believe that it U.C. is entirely a work of the mind. It seems to me that I had a genetic pre-disposition to U.C. My Grandfather had terrible guts, as does my mother and my Dad also suffered gut-trouble towards the end of his life.

I don't think U.C. is a psychosomatic disease, I think it is very physical illness whose origin and mechanism is not understood. In my experience the psychosomatic card is often played by people who are running some other agenda behind the scenes.

I must, again, say how I found hypnotherapy helpful as a coping strategy for anxiety.

It can’t be bad to try and get your mind straight, and decode yourself. Even if it won’t cure you, it will be work worth doing.

I think it best to try not to be a prisoner of your mind if you can help it.

2) Answer: Ulcerative Colitis can be cured with a change of diet

Questions:

If U.C. can be cured by a diet why don’t the N.H.S. simply tell you what to eat and save all the money they spend on doctors, colonoscopies, infliximab, stoma nurses, surgeons, hospital beds, and consultants?

I am no mathematician or economist, but surely printing a few menus and even sending someone round with suitable food would be cheaper?

Personally I agree that 15 pints of lager and a blazing hot Phal curry, topped off with a kebab between the restaurant and the front door is going to be quite disastrous for you, the U.C. sufferer. Equally a diet of mild broths, and insipid meals made from inoffensive ingredients will not give you so much of a gripe.

3) Answer: Alternative medicine can cure U.C.

If alternative medicine can cure U.C., why don’t we set up a system in which patients are routinely referred to alternative therapists?

Is there a conflict between conventional and alternative medicines over the treatment of U.C.?

For myself, I tried acupuncture when I was first diagnosed with U.C. and my experience was that it calmed some of the symptoms but it didn’t cure the disease. I really wanted it to work.

The experience of alternative therapy seems to me to have a shamanistic aspect to it as well as any other therapeutic effect. My acupuncturist took time to talk to me, did not frighten me, and only stuck very small pins in me.

I think there may be a great mutual misunderstanding of the two tribes; scientific medicine and “humanistic” (for want of a better description) medicine.

4) Answer: Surgery will “give you your life back”

Questions:

If surgery can give you life back, can I please take off this bag and pose in the nude on the fourth plinth?

What do you mean by “give you your life back?”

Before surgery I thought it was the worst thing that could happen to me. I viewed it as the ultimate submission and failure of the medical process and my personal resolve. I could not easily bear to contemplate being so weird and disfigured.

I was, in a way, corralled into the decision because I did not want to stroke the cat of death again.

Now, on the other side of surgery, I feel that I am still me and I am not as hideous as I thought I would be. I don’t have a rack of pills by the bed, and I can walk and go to the gym and swim. I don’t have emergency bog moments, although I am aware of my plumbing. This may mean that I have my life back, or not.

It depends on your criteria.


If you have any Frequently Questioned Answers I would love to hear about them.

A New View

The hospital corridor is filled with trolleys containing files, Mr Fitch is extracting one of these files and talking to a nurse. In the distance my original consultant also extracts information from a similar trolley.

Earlier this year, in a similar situation, my heart rate would have escalated, and adrenaline would have coursed through my veins; but not today. Today I feel quite relaxed and at ease.

A nurse calls my name and Clare and I are ushered into a white room, sporting a computer, a chair, a bed covered in paper, and what looks like a vacuum cleaner for the body. However none of these things strike fear into me. Not even the title of the room “demonstration” in a discreet sign attached to the door fills me with trepidation.

My old consultant enters, clutching a large file. I immediately stretch out my hand and she takes it. I have had a strange, sometimes difficult relationship with this woman. She has wanted me to be disembowelled for a long time, and this has always been a matter of contention. Now it is done and we seem to be on a more level relationship. I am genuinely pleased to see her, and she is genuinely pleased that I am healthy. Brief conversation and then she leaves. “Back to the grindstone” as she puts it.

Next Mr Fitch enters with my notes. A large file held shut by a long brown rubber band. He removes the band and starts to twirl and twist it around his extremely clean hands.

After preliminary conversation, about whether I am getting on OK we move on to discussion of the future and possible surgery. Reconnection is the word they use.

“I think I want the full broadband 100 megabytes” I explain. The rubber band twists around his fingers tighter and tighter.

“I presume if it all goes wrong the worst thing that could happen is that I end up back where I am now?” I ask.

“No; the worst thing that could happen is that I could kill you” he says quite calmly. He assures me this extremely unlikely.

Later on we even have a joke and a laugh as he describes being in hospital himself one Christmas and being brought NHS sherry. NHS Sherry?.

"It was horrible and brown" He laughs loudly. I actually quite like this bloke.

I am not worried about the future whatever it may bring.

I must have travelled quite a long way in the last year. This would have freaked me out a few months ago.

Block Party and Swim

At my Gutless Rog party dressed as Dr Love, Talking to Dr M.
(We know how to party!)
(Photo by Frances Lee)
(Apologies for mis-nomer)

Sartorial elegance itself

I decided to have a “Gutless Rog” party to celebrate the end of 13 years with UC, and the coming of spring. I used to have lots of parties but not for a long time now.

The day of the party saw me preparing a number party plates; and baking potatoes. This smorgasbord of culinary delight included coleslaw, and Russian carrot salad. The evening arrived, and brought with it lots of old friends from different quarters of my life, and a jolly good night it was too. However parties are not the point of this blog. Lets stick with the nitty-grrrrritty.

The day after the party came and there was quite a lot of salad left over. Reasoning to myself that in the last year or two I had avoided salads and seeds on account of the old gut, and given that I no longer have the offending item, it seemed the sensible and healthy option to pile into the salad. Reasonable surely?

Surely not. Pain. With every wave of peristalsis considerable pain, and no word from Banquo. Not even a mutter. It was really horrible. Clare whipped around the internet reading up on the condition and promptly pronounced me blocked. The worry being that everything could gum and you can end up being nauseas and worse.

I rang the Stoma nurse, and she told me that it would probably unblock in a day or so. Clare prescribed hot water and rest. Which is what I took. On the Wednesday I was teaching and found it quite hard to keep going and I had to keep sitting down.

Anyway, eventually it unblocked thank god. So there was a lesson for me.

Followers of this blog may also be aware of my attempts to get back into swimming and exercise, and the sartorial problems of having a scar that stretches from my ribs to my whatsit, a hole in the side, and a bag.

The answer is a triathlon suit. I got mine from from Swimwear On Line, but I didn’t buy it online as I wanted to look at it and feel how stretchy it was. I phoned them up and spoke to a very helpful man. It would be fine for me to come the factory and look at the garments, and buy one there and then. I mounted my motorbike and set off for Sutton In Ashfield.

As an aside I have to mention that I passed something I had never been aware of before. The Sherwood Observatory.

In the factory I discovered the man, surrounded by piles of swimwear, a line of women operating sewing machines, and the occasional computer. He eyed my up and down and pronounced me 6 foot and about a 33 inch waist. I felt slightly trapped under his microscope for a moment. However I left with a garment stowed in my rucksack.

A few days later I joined a new gym. I felt that the old one was falling apart at the seams, and also that I would rather go somewhere people didn’t know me at all. A man without a past seemed more to my liking.

So it was that I entered the new gym, triathlon suit in my bag, and some excitement in my heart. I was amazed to be given a towel free of charge (this never happened in the old place – 50p they used to charge). The changing room sported an iron, hair dryers and a centrifugal spinner to dry your swimwear! The place had a range of machines that all worked, the pool was small but nice, and there was also a sauna and steam room.

So here are the results of the gym experience:

I was able to use all the machines without anything coming unstuck. The swimwear was perfect – both covering everything up and maintaining a good profile through the water. I’m delighted too, to report that the heat of the steam and the sauna also did nothing to loosen or dislodge any of my “apparatus”.

So, gentle reader, all is good in the world.

“Image de corps”

A short film by N Ozzer-Poison

(With subtitles)

Interior. Night. A bedroom somewhere in the attic of a dreaming head.

Dimmed lighting, and the mournful rasp of a horn drifts low from the ancient hi-fi, muted and sinuous on a bed of lilting piano and bass. The camera tracks slowly across the bedroom, over a discarded uniform cast over the back of a chair, coming to rest on some riding boots and sword; silently standing guard.

ARKAYEFF lies, hands behind his head, his attention is focused on the fan that turns relentlessly on the ceiling. He is inscrutable.

The camera is now on the ceiling looking down, through the fan blades.

ARKAYEFF (voice over):
“Basford sanglant”
“Bloody Basford”

PROTO NYMPH enters the room all lacy and see-through, slips under the cover like a velvet cat. ARKAYEFF turns to look at her, silent for a while then:

ARKAYEFF:

Est-il possible que nous soyons dans l'amour ?”
“Is it possible we are in love ?"

PROTO NYMPH looks at ARKAYEFF with knowing eyes; blue gleaming jewels. Unreadable.

PROTO NYMPH:

“Tous les hommes ont deux choses : Un bâton et un sac”
“All ze men‘ave two fings: A stick and a bag”

ARKAYEFF says nothing but rises from the bed, and in the dull glow of the light from the alarm clock and the radio. ARKAYEFF starts to peel off his shirt and . . .

N OZZER POISON
“Coupe ! C'est désespéré"
"Cut! zis is 'opless"

N Ozzer-Poison is not happy, incandescent with rage he walks out of the room throwing the script on the floor.

Fin

Do I have a disability?

In order to improve the running experience I have invested in a kind of cummerbund which holds me tightly round the middle and stops me feeling as if I am about to open up like a book.

One day I walked at speed to the forest recreation ground (mile and a half) which warmed me up, and then started to do the run / walk routine. Plodding so slowly and oafishly round the field whilst others seemed to spring painlessly past, carefree of their natural energy. Bastards!

I discovered that on the forest there is an outdoor gym which uses your own weight rather than weights. I sweated round all the bits of equipment and it felt really good. I felt almost euphoric as I pumped and pushed. I was me again.

I had also decided was that I was going to swim again, and so Clare and I arranged a visit to a company called Ostomart to look at some high waisted-swimmers. I was not really sure about these as have been used to budgie smugglers all my life. The thought of wearing such a voluminous garment in the water gave me black and white and grainy images from the mid 1950’s, and did not appeal.

We found ourselves in an office staffed by about 5 women behind computers, and on phones. They showed me a pair of the sail like swimmers; and these were the small ones. My god! You could catch fish with these things. I decided against them. I asked about changing my prescription to be with them and before we knew it we were in a room stacked to the ceiling with “products” and “supplies” The woman showing us round this odd new world seemed to know everything. She was easy to talk to, very re-assuring.

“People get used to a product and don’t like to change, so we have to stock old designs as well as modern ones.”

She described how some people have a rubber bag which they keep on for a really long time and which they wash out. Not what I want.

The sartorial problems of swimming seemed to half solved when I bought a pair of Bermuda shorts. These in combination with a pair of high-waisted elasticised pantaloons from Ostomart, seemed to offer the possibility of swimming again.

So yesterday I walked to the Noel Street Baths, and asked for a ticket to swim. The woman asked if had a city card. No I said, so she gave me a form to fill in.

I admit that forms can defeat me quite often but this one looked a doddle; name, address etc. But then I got to the question

“Do you have a disability?”

I was stumped and I didn’t know what to put. Does anyone out there know the answer to this question?

Having got my ticket I entered the pool area. It’s one of those really old pools that have changing cubicles all round the sides, and vitreous tiles .

I slipped into my new pantaloon / swimmer combo and opened up my new goggles. I was ready to swim. In the pool I started swimming with great pleasure. It was wonderful. I used to swim everyday. I really miss that, and the sauna too. As I got to other end I did a quick grope to make sure everything was still in place. The Bermuda shorts had slipped down to my hips, and my bag was poking out of the top like a large dog’s tongue.

I leaned against the wall and flipped up the goggles on my forehead and started to adjust everything. It was at this point that one of the goggle eyepieces slipped back down over one eye.

I had suddenly become a strange squinting man fumbling with his nethers in the shallow end. Not so cool. Shorts tightened to the max, I set off again, but at the other end I was one eyed and fumbling again.

I returned to the changing cubicle and bodged two holes in the waist band of the swimmers with my car key. These allowed my to rethread the boot lace at the front in such a way that I could really tighten them up. I emerged from the cubicle like a man wearing a whalebone corset.

BUT

In the pool I was swimming again. Brilliant.

And I’m so much better at swimming than running.

I’m happy

Learning to run again

Rome 2007, a limping Roger sweats his way around the Coliseum accompanied by The Marchioness of Basford and Sherwood.

It is now about 5 or 6 weeks since a masked man in green pyjamas cut me in half. I am feeling a lot more like the old me now. I have more energy and I have got used to the new plumbing.

One of the strange side effects of having colitis has been that my leg joints have been really painful at times. Sometimes it meant that I lurched slightly in the street, and being quite large and bewhiskered, people would cross the road in case I asked them for money.

At times I've had to use a walking stick, and I have been rendered virtually immobile. Some UC patients will have experience of Infliximab which I was on before the surgery. Apart from playing around with my immune system it also gave me a few weeks pain free walking before I would slowly seize up again.

I used to run a lot, many years ago now I admit. I used to casually run 10 miles without a thought. Then I got the Ulcerative Colitis and running didn't seem like such a good idea. It shook my guts, and as time progressed hurt my ankles and knees. So then I used to go to a gym and grunt on the machines there before swimming a lot of lengths - (100).

I was going to the gym right up to the day before I went into hospital to meet the masked man. Now, after the operation, my legs don't hurt me anymore. I can walk with ease.

One cold night last week I was coming back from a pub, and I took it into my head to combat the cold by running. So I started to run and despite still looking a little frightening to other pedestrians (not wearing running gear you see) it was not too painful.

So a few days later I set off to run round a large park area of Nottingham called The Forest. It was cold morning and my eyes and nose and ears were cold.

I started to run very slowly the length of The Forest. It was a bit odd, I seemed to have leaden legs and I ran out of breath pretty quickly. All around me were athletic people gliding by at speed almost as if riding bicycles whilst I trailed along at petty pace gasping for breath. Some of them slips of girls that ran like whippets, some of them big muscular men in football gear nonchalantly trotting past me like horses.

Today I had another go. This time I had planned to walk for a bit, run for a bit, walk for a bit, run etc. I started by going for a walk up a hilly road to warm and loosen the legs, then on the flat I began an inelegant run. I managed to keep it up for about three minutes (That really is bad) then I walked for about the same amount of time. I repeated the walk run routine for about 30 minutes.

My knees and ankles have become very weak, and going down hill I fear that my knees will give way.

IT DOESN'T MATTER! I'm running. Just a little bit, just a step at a time.

I will run again.

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.