September 2010

Catherine was one of those entrancing women, so full of life and fun, a free spirit, brave, sparky, vivacious – the kind of lively, fragile personality who lives on the edge; exciting, impulsive, passionate and very dangerous.  Like a candle in the wind, she was never going to be tied down to the routines of marriage; it would be too boring for her.  But Jules worshipped and adored her.  He couldn’t live without her.  He went to war. She had lovers.  Then Jim, Jules best friend, turned up.   Jules told him how scared he was that Catherine would leave him.  He recognised that Catherine had  eyes for Jim and told him that it was alright for them to have an affair as long as they didn’t leave him.  But their ménage a trois was not entirely happy or honest.  Jim still continued to be in contact with Gilberta, Catherine became bored,  Jim felt jealous of Jules.  There was trouble in paradise.  He left saying that they should have a break.  Catherine was desperate, she wrote to him. 

Some time later, they meet again in Paris.  Jules and Catherine invite Jim to their mill on the Seine.   Jim tells Catherine he is going marry Gilberta.  Catherine produces a revolver and threatens to shoot him.  He wrestles the revolver off her and escapes through the window.  Some time later she calls him.  They all go for a picnic by the river.  Catherine invites Jim to go for a drive with her; she has something to tell him and she invites Jules to watch them.  She then drives the car off a broken bridge into the river, killing them both.  Jules is destroyed.   

So what kind of person is Catherine?  They say she is La Reine.  She has to be obeyed.  Impulsive, controlling, charismatic and sexually provocative, she is the sort of free spirit that has men in her thrall.  Although they might be able to possess  her sexually, they can’t tie her down.  She will always find someone else who is more interesting, more exciting.  What is the point of life if it is not exciting?  Catherine falls in love at the drop of a eyelid, but she cannot love.  She cannot tolerate the day to day living, the routine of it, the struggles. She is too hedonistic, too easily dissatisfied.  She has to have drama.  Like a spoilt child, she needs  attention; it’s her life’s blood.  But if she doesn’t get it, look out, there will be trouble; she will betray, abandon, and is even prepared to kill.   She has a split personality.  She can be delightful and entertaining when it suits her, but she also has a dark, murderous side with  little empathy and no sense of guilt or shame.  She will manipulate and exploit men to achieve power and excitement, but never quite realises how she hurts them.  She never thinks how her behaviour affects Jules or her daughter.  She can’t help it.  It’s the way she is.  Her men either have to worship her or be destroyed.  Jim refuses to play the game and is sacrificed.  Jules has to suffer – forever.

Jeanne Moreau plays Catherine in Truffaut’s 1962 masterpiece of French cinema.

 In the beginning was the word and the word was ACGT – life encoded in combinations of three out of a possible four nucleotides; Adenine, Cytosine, Guanine and Thymidine.  This year is the 10th anniversary of the sequencing of the human genome.  At a stroke, it would appear,  a new perspective on health and disease has opened up.  By comparison of genomes from different individuals, it may be possible to identify the risk of getting disease and, armed with that knowledge, make the necessary changes in diet, lifestyle, and exposure to chemicals that would reduce it.  

But genes encode for proteins, not for diseases.  But we only know about defects in specific proteins in a few rare diseases.  In Duchenne muscular dystrophy, for example, there is a defect in the synthesis of a key protein known as dystrophin.      

Common diseases like irritable bowel syndrome are likely to be the end result of an interaction of a number of factors, each with their own genetic and environmental regulators.  And since IBS overlaps with other diseases as well as anxiety and depression, any genetic component will most probably encode for a protein incorporated in some generic factor involved in visceral sensitivity or emotional reactivity.  In addition, genes may predispose to an illness but only in combination with other genes and changes in the environment brings that tendency out.  For example, environmental change induces growth and connection of nerve cells by regulating gene expression.  And this can affect every system in the body.  It’s all very complicated.  Any advance in knowledge rarely provides simple answers, just a vast array of unforeseen questions.  

Only 1% of the genome encodes for specific proteins, about 20,000 of them – the same number as in a nematode worm.  Ten times as many are regulator genes, that are turned on and off by environmental factors and modify the expression of certain genes.  Anything that changes the expression of transmitters, modulates intracellular machinery, and induces growth and cell division will involve regulator genes.  These then are the targets for treatment and prevention.  The remaining 90% of the genome is thought to be junk, DNA fragments, stuff left by some viruses.  Scientists have found no use for it as yet.  Genetics, like human life, is a bit of a mess, not unlike the hard drive of your computer, which contains bits of everything you’ve deleted or copied. 

So the sequencing of the human genome hasn’t resulted in the dramatic breakthroughs that were expected.  Part of the problem is that it takes a long time to sequence the genome from a single individual and everybody’s genome is different.  At the moment, gene sequencing is rather like tearing a book up into fragments of page,  sequencing these and then putting them together again, but with new methods of sequencing coming on stream, things will be much quicker.  In five years time, the cost of sequencing somebody’s genome will be as little as £1000 and we will have a much better handle on the nature and function of the regular genes.  Then comparison of genomes from people with IBS will be feasible.  But will we be any closer to finding a cause  …… or an answer?

The carers leave notes for each other on the wall above the work surface in her kitchen.  The one this morning read,  ‘If the district nurse or any member of the family ask you to help them move Doris, you must say NO!’ 

I went through to the bedroom.  Mum was half lying, half sitting on pillows, wild eyed, without teeth, without hearing aids or glasses.  I was shocked.  I put her teeth and hearing aids in, put her glasses on and asked Rosina to help me get her up.  She looked scared and refused.  ‘I’m not allowed.’  So I manoeuvred mum out of bed onto the wheelchair and wheeled her into the sitting room and danced with her onto the sofa,  where we settled down and thumbed through old photos of Bristol.  When the next carer arrived, I asked if they would change her pad.  Rosina looked doubtful but Joanne said ‘of course.’    Afterwards, as she was going, Rosina told me there was faeces in it and they weren’t allowed to deal with solids. 

Later,  Cheryl rang from the office and told me she had talked to the rapid response dementia team, the district nurse, the physiotherapist and they were all of the opinion that mum had to go into hospital.  ‘It takes two carers to help Doris onto the commode or to change a pad.  And they cannot deal with solid matter’. 

I sighed, ‘Health and safety.’ 

‘Nick you would not believe how many regulations there are these days.’ 

‘I would, Cheryl, I would.  But the bottom line is that if mum goes into hospital, she will die, and I don’t want her to go like that.’ 

I had visions of her waiting around behind a curtain in Casualty for hours and then being going  to a crowded and noisy admissions ward.  So I announced: ‘Why don’t I be on call, Cheryl.  I can call in twice a day to lift her.’  

‘But, Nick, you will need to be in all the time –  even through the night.  You will not get any sleep.  And how are you going to deal with her if she is incontinent of faeces?’

‘Well, I will just have to be less squeamish.  Can’t we at least try it?’ 

Mum had rallied with me there that afternoon and I didn’t want to abandon her now.

‘No Nick, I really think we have come to the end of the line.’

It had all started after the fall.  The carer had left her alone in the bathroom and gone into the kitchen to make breakfast when she heard a crash.  The doctor decided she hadn’t broken anything, but thought she had a chest infection.  He prescribed oral morphine, which I withheld because I felt it would hasten a slide into hospital. 

But now there seemed no alternative, so I telephoned the GP and arranged for mum to be admitted to a private hospital over the weekend.  Four hours later and the ambulance still hadn’t arrived.  ‘Oh, it’s Friday night and they will be out on 999 calls.’  Mum was exhausted and sinking, so I dialled  999. 

‘Oh no, squire’, said the paramedic, who was built like a rugby player.  ‘Our rules are we have to take her to casualty at the Northern General and then they can take her to St Benedict’s after that.’ 

‘But she’s already got a bed in St Benedict’s.’ 

Eventually he agreed as a favour, but explained how much trouble he would get into if his supervisors knew.  ‘It’s not me squire.  It’s the regulations. You’ve just got to be so careful these days. But she’ll like it here.  They’ve got shower gel!    

St Benedict’s was quiet and peaceful.  Mum settled into a comfortable bed and went to sleep. 

The next day, they phoned me at 8.30am and requested a deposit of £2500.  I gave my credit card details and then asked to be put through to the ward. I was connected to the consultant, who explained with great grace that they had taken an Xray and would begin to mobilise her if there was not a fracture. 

But when I arrived, she was fast asleep and unresponsive.   They had not got her out of bed.  She had been incontinent overnight and she was not swallowing water.  

I talked to the sister. ‘We’re a busy ward.  There are surgical patients and children.  Your mum needs a lot of attention and it’s the weekend. I don’t have the staff.’ 

Can nobody help care for mum?  I have encouraged them to put up a drip and give IV fluids, they have catheterised her.  I know when meal times are and will go and try to get some of that delicious cottage pie down her. 

I suspect their attitude is to let her die with dignity.  That’s fine, but although she is 94,  mum’s heart is healthy and she is physically quite strong.  She needs the kind of 24 hour one on one attention the carers were giving her at home, but she will never get that in hospital.    In the meantime, they give her lovely food but she can’t feed herself,  they provide drink but she won’t drink it,  they prescribe mobilisation but the physio looks after the whole ward and doesn’t have the time to get her up on her feet and mum is too frightened. 

She’s now been in St Benedict’s for three days and there’s a change.  It’s like she has lost hold of her life.  When I arrived yesterday, she was slumped in a chair, desperate, pleading, ‘Oh please, oh, please Nick, pulling at the sheets on the bed, plucking at her drip, trying to sit up.  I put her hearing aid in and tried to communicate but when she responded, it was with half a sentence.  ‘I want to go …. Get me out ….. Nurses…… Toilet’ .   She recognised me, stared at me desperately before her eyes seemed to cloud and look away. 

I phoned the consultant.  ‘It will be a long haul to get her back to where she was before she came in, if she ever gets back.  Over the next few days, we will get her over the infection and try to encourage her to feed herself and walk, but I suspect this will take more time than we have got.   You will need to get her in to a nursing home.  

I guess mum had been on the brink for some time,  kept going by the constant round the clock attention of her carers.  It would only take a moment’s neglect; a fall plus the rigid application of  regulations and she was suddenly in a place where they couldn’t help.   I sense her terror.  I hold her and she quietens a little but as soon as I let go, she’s back in her own version of hell.   And what now?  She certainly can’t go back.  She will go to a nursing home.  They will keep her body alive , they will feed her, give her drinks, turn her, manage pressure sores.  I can only pray that her mind has  long gone by then,  she has released her fierce grip on life and resigned to oblivion.  

People say that the British have the best care system in the world.  It’s not true.  The boost in NHS funds may have enhanced the efficiency of health provision, but it has not improved care.  Care requires flexibility and compassion.  It takes human understanding to know how to work within the rules to provide what a patient needs.  All too often regulations lead to restriction and a withholding of care.    

Jules Henri Poincare (1854 – 1912) was in trouble.  The most famous mathematician of his generation,  he set himself the task of predicting accurately the orbits of the earth, moon and sun.  His solution was brilliant. It was nominated for a prestigious international prize, but just before he was due to present his theory and collect his award, he found he had made a mistake.  If he had used different assumptions at the outset, he would get very different results.  Mortified, he wrote a follow up paper explaining his mistake, but in so doing, made the first mathematical contribution to what became known as chaos theory,  though this aspect of his work was largely ignored until the 1970s when ‘chaos’ became the rule for many systems.    

Chaos is evident in all aspects of life.  Weather forecasting is an exercise in probabilities because we can never be sure of the starting conditions.  We can’t factor in  all the variables.  This is why it is said that a butterfly flapping its wings in West Africa will result in a typhoon is south- east Asia.  It’s not meant to be taken literally, just a mathematical possibility to illustrate how small unconsidered variations can cause enormous effects.   

And take sport.  They said England had a good chance of winning The World Cup this year, but what went wrong?  Could a glance across the table by a teammate’s wife have set in train a sequence of events that unsettled the captain, led to a players revolt against the coach and culminated in a catastrophic collapse of confidence?

And what about politics, computing, and the stock market?  Somebody can’t sell his house in Wisconsin and we end up with a global recession.   Or the rail network.  The wrong leaves on the line in the Home Counties and business in the City of London slithers to a halt. Small variations can have massive effects.  A tiny wobble in the orbit of an asteroid could destroy all life on earth. 

And in medicine, a small change in environmental conditions, a particular event, can so easily bring about illness.   Perhaps a tune on the radio could revoke a memory that could upset the gut and result in an argument that ends a marriage.  With no chance at resolution the gut upset persists as unresolved IBS.   When scientists do trials of treatment, they try to hold all the conditions constant.  This is what is called a controlled study.   It relies on certain  assumptions about which factors are important.  Age and gender may be controlled,  diet might be in a few studies, emotional factors almost never and yet these may be crucial.  So they can never really control the outcome.  If they make the same measurements 100 times in the same patient and they will come up with a hundred different results.  So what do they do?  Employ a statistician to tell them an answer they might (or might not) be able to rely on!  But  they still might be ignoring certain crucial factors because they don’t think they count or they are impossible to control.  As Albert Einstein declared, ‘Not everything that counts can be counted.  And not everything that can be counted, counts.’  

Irritable Bowel Syndrome is an idiosyncratic disease.  It is more an expression of the personality, life experience and life style than those variables that can be easily measured.  Moreover it can’t be easily defined because there is no identifiable change in body structure or chemistry.  It is whatever doctors say it is.  No wonder treatment is so variable and so personal.  It’s an exercise in chaos; a bit of a lottery.  What works for one person may not necessarily work for another.  But you can cut down the variability by reading the self management programme and getting to know about your illness, yourself and with some guidance managing your own symptoms.

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