James Follett Progress Report 29.04.2007

 

Rumours that my wife needed four men in white coats armed with cattle prods to drive me into Guildford's Nuffield hospital last Tuesday for my dreaded TURP operation are grossly exaggerated. A monstrous calumny. Two men were enough. I am not a coward; I can stand any amount of pain except my own.

In fact there wasn't any pain at all. Having had all the pre-op assessment tests, on arrival at the Nuffield my wife and I were shown to a very swish private room. I was introduced to the theatrical ward nursing support team who came trooping in. The warmth and brisk efficiency of the Nuffield stuck me immediately. I was gowned and into bed and was trundled down to the theatre within three hours of admission.

I woke up in recovery an hour later feeling fine but sporting an enormous catheter sprouting out of me with several pipes and valves disappearing into it. I've been stuck with a wretched catheter and a urine bag strapped to my leg for nearly five months but not a catheter as big or complicated as this monster although I had been told what to expect. I was euphoric: thanks to the remarkable skill of Stephen Langley, Professor of Urology at the University of Surrey, I had come through the dreaded TURP procedure without a hint of pain or even slight discomfort.

For 24-hours, all of Wednesday, copious quantities of water were pumped in and out of me to flush my system. The nurses had a struggle hoisting three litre bags of water onto the stand. The stuff coming out of me started off as bright red! Yuck. I even had a drip feed into a vein. I was at the centre of a complex irrigation system which ended on Wednesday afternoon when everything was running clear. On Thursday night at midnight the surgical catheter was removed. For the first time in nearly five months I was without external plumbing and a collection bag. I was on my own and drifted off to sleep, very much concerned that I'd wake up in a urine-drenched bed despite the assurances of Professor Langley that everything would be fine. My misplaced misgivings were because I'd hadn't exercised control over my bladder for several months and was convinced I'd lost the 'knack'.

My fears were unfounded. I was woken by an urge to pee and, to my joy, I could pee normally. It was bliss that I find hard to describe. On Friday morning Professor Langley said I could go home that afternoon with the advice to take life very easy for a couple of weeks. My wife collected me and I'm now back at home being spoilt and pampered outrageously by her.

My three and a half days in the Nuffield hospital were a real eye-opener into how a hospital should be run following so close on the heels of my stay in the Royal Surrey. The atmosphere was so different. The Nuffield's staff enjoy high morale and seem to operate under excellent management whereas the Royal Surrey's staff, although dedicated -- they can't be faulted for that -- nevertheless are working under a miserable cloud of uncertainty about their future. They deserve better.

Also the Nuffield take MRSA very seriously. Their daily cleaning schedule is incredibly rigorous. To the best of my knowledge they've never had a case of MRSA. For someone of my age who has experienced the misery of the wretched bug, the peace of mind that came from knowing that I was going to a hospital where it was unknown made the high cost of going private well worthwhile.

Being home is wonderful. Although the care I received at the Nuffield was above reproach, it's lovely to snooze the day away without taps on the door every thirty minutes or so for blood pressure tests etc. The slight stinging I'd experienced on Friday when urinating was gone by Saturday.

Another hurdle out of the way. I'm getting there.

Regards


Jim

 

James Follett Progress Report 14.03.2007

 

It's three months since I had an ataxia stroke which left me unable to walk so I thought I'd follow up with a progress report:

My stroke was a lulu. It left me without any sense of balance. I couldn't even hold my head up, never mind walking. The doctor broke it to me nicely. The good news: I could learn to walk again just as a baby learns to walk. The bad news: it would take time and, being nearly 6 foot 6 inches tall, my high centre of gravity meant that falls could not be allowed.

So I started off like a baby by learning to hold my head up. The other stages of learning to walk again are standing up, and promptly sitting down followed by using a wheeled toy to trundle around on. In my case a Zimmer frame; a stable device that gives confidence but it doesn't encourage a proper gait. Ungainly shuffling, crouched over a frame, legs wide apart may be safe but it isn't walking.

The second stage is using crutches. According to my physiotherapist, crutches are an improvement on frames because they allow more flexibility. The frame, like daleks, is defeated by stairs. Nevertheless I hated those damned crutches; I could never figure out proper co-ordination between arms and legs, and having to disentangle my forearms from the arm cuff sleeves whenever I wanted to use my hands was a nuisance. Left to themselves they were always falling over whereas the frame always remained upright. To the consternation of my physiotherapist I insisted on skipping the crutches stage and went straight to the third stage: ordinary walking -- or as near ordinary as I could manage.

The physiotherapist is a great girl. Once she realised that her crutch instructions were a waste of time, she wholeheartedly pushed me into walking. It worked. The corridors of the Meath Centre in Godalming, where I do most of my physio sessions, are equipped with friendly handrails which inspire great confidence. If a slip of concentration causes me to lose my balance, a handrail isn't far away. It was some time before I could walk across our living room with nothing around me but I eventually managed it. I'm also walking through the garage to my office. I need to wear my Peter Pan type handling belt when walking outdoors so that a handler can slip a steadying finger into a loop and keep me upright. So far I've only managed trips around the garden paths. The thought of having to walk along a crowded pavement fills me with horror but my physiotherapist insists that it's part of her programme and that the day isn't far off when I'll be having to chance crowded pavements. I sometimes suspect a cruel streak in that girl.

Right now she's pushing me into advanced stuff such as picking up objects, turning around, and setting them down somewhere else. The first time I tried it I suffered terrible nausea attacks. Now I can shift weights about and generally cope with a changing centre of gravity although walking with a payload is still a problem. Many of the operations she suggests are worse thinking about than actually doing. I astonished her and myself by walking backwards at her behest with ease although thinking about doing it had me shuddering. My main problem is that my left foot is dead. There are no working nerves in its instep. It's exactly like trying to walk on a foot that's gone to 'sleep'. Pretty well impossible. Getting control of my left foot and teaching my brain to know where it is has been a real challenge.

Rising to my feet from different heights has been greatly eased by my weight loss over the three months since my stroke on 2nd December. I've lost three stone; a stone a month loss which seems to be continuing. I can take no will-power credit for this: a consequence of either the stroke or the alarming handfuls of drugs I'm swallowing daily is a total loss of appetite. I actually dislike having to eat and would happily go without eating at all if my wife, Christine, would let me -- which she won't. My love of coffee is a thing of the past. Every now and then I try again in disbelief but it's no use -- instant, cappuchino, espresso-- they all taste like mud. Earl Grey tea without milk or sugar is fine so I'm now addicted to that.

One of the problems stroke victims suffer is that they're not very healthy owing to lack of exercise. In my case my weight, blood pressure, blood-sugar, cholesterol are all under excellent control, but I'm unable to get much in the way of working up some serious cardiovascular sweats with strenuous exercise. Twice weekly sessions on the treadmills at the Meath Centre provide the fast walking opportunities which I need but they're not enough and expecting Christine to take me to the centre every day is a little hard on her. She does so much for me anyway. Looking through catalogues of treadmill suppliers was a sobering experience. For my weight a commercial machine is a must and they're expensive. Nevertheless I've bitten the bullet and ordered one. I dare say I can donate it to the village's spanking new cottage hospital when I've finished with it.

Apart from walking again, my next objective is to get rid of the damned catheter. I've had a bloody urine bag strapped to leg and connected to an uncomfortable tube thrust in my wotsit since mid December in hospital when my prostate gland swelled up and closed down my urinary system without asking. I can't describe the agony that urine retention caused when my bladder backed up and infected my kidneys. I wouldn't wish that pain on my worst enemy.

Two weeks ago I had a morning of sonic scans, X-rays and other assorted tests at the Nuffield Hospital in Guildford (my word, they're efficient!) and the results are that the prostate's condition is benign and that I'm a suitable candidate for a TURP operation. A word of warning: don't go using s search engine to look up TURP -- it's not suitable reading for the squeamish or those of a nervous disposition!

I'm booked into the Nuffield Hospital for five days in April. That's one day for the op, and four days of observation to make sure that the process works. They like to be certain that urine and other stuff is being properly ejected. The Nuffield operate a fixed price system when they're satisfied that treatment is likely to be routine. One pays a little extra but one doesn't have to worry about the extra cost of treatment if there are complications. Two weeks in the Nuffield could turn me into a pauper. Well -- almost. I'm looking forward to the op because I can't wait to get rid of this bloody catheter and its wretched bag.

Generally my progress has been uneven. A catalogue of progress surges and then miserable set backs. I seem to be prone to any illness doing the rounds. Last week I had a urinary infection that knocked me for six. I was so feak and weeble that I could hardly stand, and spent the entire time in bed. That I couldn't walk caused the most awful depression in the early stages because I imagined that I suffered a reversion.

Tests on urine samples pointed a finger at a possible MRSA infection as a legacy of my stay in hospital. I even had to endure a catheter replacement -- an uncomfortable business -- because the old catheter came from the Royal Surrey Hospital. Careful analysis of samples eventually established that I was suffering from some sort of e-coli infection. I was given a narrow spectrum antibiotic with the most awful side effects. Dizziness and God knows what else. Thankfully I was taken off that smartish.

On balance I'm quite upbeat and cheerful. I've got a lot to be a cheerful about: my concentration has steadily improved to the point when I can almost do a full morning's work and I've been revising a new novel, Hellborn, at the rate of a page each day. Admittedly I'm still very slow. It took me three days to do a VAT return but I did it. My wife is the best nurse in the world and the support from my wonderful doctor, based at the top of my road in the new cottage hospital, is second to none. The professionalism shown by her colleagues such as the practice nurse and the diabetic nurse is remarkable.

I hope to be back to normal walking and working by June.

James Follett Progress Report 17.01.2007

I was reborn, totally unable to walk, on 2nd December 2006 at 0730. I had been working in my office, which is attached to my house, revising a nearly complete and long-overdue novel, when I decided Iíd had enough. I switched everything off, stood up, and promptly fell over. Thinking I was more tired than I imagined, I had another go at standing up and flopped across the catís chair. My sense of balance had gone completely and my left leg felt like a sock full of custard.


I crawled into the house and yelled for my wife. I clung to two things: a bookcase and a belief that I was over-tired and that everything would be put right by a bit of shuteye, but Christine insisted on calling for a doctor. Early on a Saturday morning? Some hope! Nevertheless she called NHS Direct. Her description of my symptoms to their operator and her answers to his questions resulted in him calling for an ambulance immediately. Wonder of wonders, it arrived in double-quick time.


Convinced that Iíd never see my beloved home again because I was by now quite ill, vomiting like Old Faithful, I was whisked off to the Royal Surrey Hospital in Guildford. An hour and twenty minutes after Christineís NHS Direct call, I was in the hospitalís A and E unit to begin initial stabilizing treatment, then I was moved to the Medical Assessment Unit to start two days of rigorous tests. CAT scans, MRI scans, X-Rays, and endless blood pressure tests, skin sensitivity and strength tests ĖĖ I had the lot. Every move from one machine to another that required me to move my head resulted in me being violently sick. It was a grim time. After that there were many tests to determine the extent of the damage to my nervous system. Being told that Iíd got off lightly, that I couldíve lost my power of speech etc, was small comfort when the slightest attempt to move my head had me heaving.


There were moments of joy when Christine, and Richard and Joanna visited me.


I spent about two days in the MAU unit in a drugged stupor, hardly eating or drinking other than by drip feeds. I vaguely recall my bed being moved at night through long corridors. A kaleidoscope of overhead signs slipping by on the fringe of my consciousness. I think one said Mortuary -- not that I cared.


Morning revealed that I was in a six-bed high dependency ward which was to be my home for the next two weeks. The doctors' job in this new ward was to stabilize me -- to stop my pulse and blood pressure from galloping off in all directions. Christine visited me every day despite the awful journey on the A3 during that period of winter fogs that had much UK air traffic grounded. I even had a surprise visit by my agent, Philip Patterson. Iíd forgotten that he lived near the Royal Surrey. Fears that heíd come to scoff ten per cent of my grapes were groundless. I was most touched by the warm messages from the agency and his colleagues.


The results of all the tests was the deduction that Iíd suffered a brain stem truncial ataxia stroke. The intriguing magnetic resonance images of my brain showed several sites of haemoeraging. The area of my brain that looked after balance was completely buggered but I was assured that other parts of the brain could be trained to take over such functions if I was sufficiently determined.


I was determined all right. My physiotherapy started in earnest with my being propped up in bed like a baby, so that I could learn how to hold my head up. After that I learned to sit up in a chair without keeling over. About a week later Christine was thrilled to find me sitting up and dressed in a chair. The initial physio sessions were tough with the physiotherapists goading me into doing things that I was convinced were impossible -- such as pulling myself to my feet and clinging to my
Zimmerframe. Once I could do that, I had to learn to take a few clumsy, shuffling steps. These early sessions usually ended with me vomiting into a sick bowl.


My progress was consistent so the decision was taken to move me to Milford Hospitalís Rehabilitation Unit. This was wonderful news. Not only was Milford (near Godalming) only four miles from home, thus saving Christine a nightmare daily drive on the A3, but Iíd be in hospital that was focussed on healing stroke victims.


I was moved a few days before Christmas. My disappointment with the hospital was immediate. The professionalism and dedication of the staff was above reproach, but it was the holiday and staff sickness season. When the NHS works, it works well, but there is no slack in the system -- if a key member of staff such as a physiotherapist is absent for a day then their work/ appointments for that day are lost. Sickness and holidays meant that I had many frustrating days when I had no physio sessions other than my own exercises such as standing up, holding onto my Zimmerframe. Over the new year period I went nearly a week without any physiotherapy. This was particularly infuriating because my progress when I did have sessions was so good. With my walking frame I had reached the stage that a child reaches when it gets around by holding on to a wheeled toy (In my sonís case many years ago it had been a big wooden engine).


In the new year a talented physiotherapist, Jenny, proved herself brilliant at pushing me beyond what I thought were my capabilities. On the 4th Jan 2007 she suggested that I walk the ten metres of the gymís parallel bars with my hands hovering above the hand rails -- not actually holding on. A crazy suggestion! It was impossible for me to walk without hanging onto something but I tried it to please her. To my astonishment I WALKED! I actually walked. Upright. One foot before the other, hands off the rails. Furthermore, she moved some ten metres from the end of the security of the parallel bars and told me to keep coming. How I made it to her Iíll never know. I used a clumsy gait that could hardly be called a walk but it worked. Christine was present in the gym at the time. I was so overcome with emotion that I collapsed into her arms and wept. By some strange quirk of memory a line from King Davidís lovely 23rd psalm clamoured at my reason. A line that was never meant to be taken out of context yet I couldnít help it:


HE MADE ME WALK.


My elation was damped by the conditions in my ward. Being a relatively old man, I was put in a ward with other old men who were also stroke victims. But they had all given up; they spent the days staring blankly into space when they werenít being washed or fed. I had no one to talk to. I had to convince all the nurses -- wonderful, dedicated men and women -- that it really wasnít necessary to shout at me. The geriatric cases in my ward were bed-blocking. They were only kept in the hospital because there was no one at home to take care of them. They were languishing in hospital, waiting to die. Poor Christine was alarmed to see me sinking into a state of abject depression.


I ached to be allowed home. She and son Richard had worked hard to prepare the downstairs of our house for my home-coming. A bed had been installed in the library. Special equipment fitted in the loo. It was all part of the hospitalís home stroke team that ensures that home care patients get all the support of the hospital with drugs etc but without the patient actually being in hospital. The trouble was that the home facilities had to be inspected and approved before I could be discharged. It was a bureaucratic step that was cancelled several times and so reduced me to black despair. By now I was convinced that Iíd never see my home again.


On the 9th January Christineís patience snapped. She marched into the hospital and announced that she was discharging me into her care and was taking me home. Richard accompanied her. Thanks to the understanding and support of the doctors and nursing staff, who had been concerned about my condition, the self-discharge step wasnít necessary because the doctor seized the initiative and discharged me there and then. The home inspection was carried out retrospectively. Christineís actions were on the advice of friends in the know who said that with the National Health Service, itís squeaking wheels that receive the most oil. A long-term patient needs someone on the outside to fight their corner. Christine, who is not a pushy person, proved herself to be an admirable champion with an unsuspected streak of assertiveness to get her own way when necessary.


Christine and Richard trundled me out to the car in a borrowed wheelchair. Twenty minutes later Chris pulled up in our drive and I gave way to tears because Iíd reached a state of depression in which I was convinced Iíd never see my home again.


Iíve now been home for eight blissfully happy days. The district nurse has now called twice, My cousin Valerie has taken over the role of supplies officer and has been busy on-line so that each day brings a delivery of an aid designed to make life a little easier. Yesterday my handling harness arrived so that the one loaned by the hospital could be returned. Itís a Peter Pan broad, padded belt that goes around the waist. It's provided with loops so that a carer needs only a light touch to correct wobbles as I stagger around. Such a simple device and yet it gives so much confidence. Richard comes in once a week to carry out various fine-tuning of the house to make life easier for me. Yesterday he arranged the office so that I can reach everything from my castor chair.


Iíve got wonderfully supportive neighbours who include a stroke nurse who has been an invaluable source of help and guidance. Another neighbour is a physiotherapist!


Iím now getting regular private physiotherapy treatment from a remarkable lady who has done much to help me along the path to proper mobility. Sheís confident that Iíll be ...

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