So I was lying in bed (as you do) at 4am, listening to those pesky birds starting to shout about their territories and remembering what the surgeon told me on the phone last night – not Lymphoma and not Toxoplasmosis, needs another week of tests. I remembered a turgid piece of prose I had started to write for therapy in Charing Cross Hopital back in 1996.
HELL AND HALF WAY HOME – VIA SLOUGH AND CHARING CROSS
Do you like medical stories? Probably not, but perhaps you ought to read this one. If you trust too much in the judgement of GPs, and come into contact with the wild world outside the office, it could be you!
When I jumped ship from Local Government in 1987 to join ICL as a senior but rather diffident former local government officer, it was decided to beef up my handling of recalcitrant suppliers by an assertiveness course. All good fun, but sadly for me this did not cover “How to tell your doctor (s)he’s got it totally wrong when you are seriously ill”.
In May 1996 after a busy period (trips to Ireland, part-time MSc course, heavy duty DIY, daily cycling) I began to suffer from serious headaches. Putting this down to eye strain from working on a nine inch visual display unit, on at least one occasion until 3am, I soldiered on for some days before visiting the doctor. Painkillers were recommended, plus antibiotics for possible sinusitis, and I was advised to get my eyes tested. Doctor № one then went off for two weeks no doubt well-earned leave.
So far so good, a few days off work would sort me out. Actually no. The pain in my eyes precluded all thought of computing, reading, TV, finally even going out of the house. Stabbing pains began in my ears, grinding in my temples, shooting pains across the top of the skull, throbbing when I lay down. Over a three week period I tried the maximum daily dose of every painkiller the chemist could offer. Invariably these could be taken not more than every four hours, and wore off after three, leaving an hour of watching the clock. Repeated trips to the surgery, a different GP each time, led to a diagnosis of – Depression! “Take these tablets and come back in two weeks, and if there is no change perhaps we ought to think about you seeing a neurologist”.
Desperate, I dragged myself to a dentist to have my wisdom teeth X-rayed, to an optician, finally to a fourth GP, on the pretext that the anti-depressants made me feel ill. At last I was given the name of a neurologist to contact privately, and arranged an appointment with only a further week’s delay.
It was now mid June, Royal Ascot Week, and very hot. To make quite sure the specialist was in no doubt about my symptoms I laid off the painkillers for twelve hours before the 3pm appointment. My wife drove me fifteen terrible miles to the Nuffield hospital north of Slough. By now patches of vision were missing in my left eye. The specialist recommended an immediate MRI scan. Tomorrow, in Windsor. We drove home through the rush hour to another night of torture, stopping at a garage to buy me some liquid.
An MRI (Magnetic Resonance Imaging) scan is a marvel of technology, but fun it is not. Imagine you spent last night drinking cheap red wine and whisky, sitting in on a beach in a draught. Now your only way home, head and ears exploding, is to lie in the bottom of a fishing boat with your head against the diesel. The trip takes 40 minutes. Please don’t move, you’ll spoil the image. That’ll be £400 please.
The following day my left eye was all but blind. Royal Ascotwas now in full swing, and travelling anywhere a nightmare. Please Doctor № four, do something now! The specialist, somewhere between his private clinic in Slough and his NHS post in London, could not be reached. “Get yourself to the NHS eye hospital in Windsor, but you’ll have to wait”. I leaned on the fence outside the surgery, waiting for my wife to get back through the traffic after collecting our youngest daughter from nursery, wondering when the other eye would start to go. The stream of race-bound vehicles crawled slowly past, smartly dressed occupants eyeing me curiously. A coach went past to hoots of “Cheer up love!” from the women on board, wine glasses in hand. I bit my lip and looked the other way. Then at last Windsor and the eye clinic. I sat for three hours in the corridor, my sight slipping away, as the ophthalmologist worked through his queue of appointments. Finally he saw me, shone lights in my eyes, asked me to count his fingers, even phoned around for the results of the MRI scan. Then he lost interest. “There is nothing wrong with your eyes, something has killed your optic nerve. It might possibly recover. Next”. Or words to that effect. Back twelve miles through the rush hour plus Ascot traffic.
Another day, and contact re-established with the specialist. Yes, he could fit me in at 3pm. Back to Slough. Now after five weeks my luck changed. Taking one look, he picked up the phone, booked me in to Charing Cross Hospital, and told my wife to turn the car round and head up the M4 into London. No, it’s in Hammersmith, not Charing Cross – they moved in 1973. Forty-five minutes later, weeping with relief and wondering if I would ever see my three young daughters again, I was shepherded to the tenth floor of a modern block in Fulham Palace Road. At last someone was going to find out what was wrong with me. My exhausted wife drove home, to find that the two friends who had taken the children off her hands had found a neighbour with our door key, put the children to bed, and begun to clean the kitchen.
Late in the night a doctor appeared and inserted a catheter into a vein in my hand. I was then put on a drip of a steroid referred to reverentially as “Methyl Pred”. Next day I awoke with no trace of a headache. After weeks of medical disinterest I now became the focus of attention. Samples of blood and spinal fluid could take weeks of culturing to show exactly what was attacking me. It was also clear that something had switched off my immune system, but meanwhile, guesswork. HIV? Married sixteen years, a row erupted between a doctor who wanted an immediate test and a counsellor concerned for my future insurance prospects. A weekend of turmoil followed as I imagined my wife and children dying of AIDS. I was showing signs of possible TB. TB? How could a clean-living homeworker in a well heeled part of Berkshire get TB? My mother’s cousin had died of it back in 1947, and some of her possessions are in my family archive, but surely not. What about that copy of the Big Issue I had bought in Covent Garden before Christmas? Or the two weeks in March shut in a temporary courtroom at Reading Crown Court on jury service? Should I try to contact the rest of the jury? Can one sue a court for exposure to villains and their diseases?
Well perhaps it would not turn out to be TB. As my befuddled brain tried to retrace my activities, I remembered being bitten by a dog – a Labrador if you please – while cycling in the autumn. Mountain biking without mudguards, I regularly ingest whatever the weather, the public, their dogs and horses have left on the local roads and bridleways. Since the beginning of the year I had been walking in the Wicklow Mountains, had picnics in the Lake District, Yorkshire Dales, Derbyshire; spent a weekend in Norfolk; visited a wildlife park. Had I been to the New Forest recently? Yes, a picnic in February. Bitten by any ticks? Been in contact with any mice lately? MICE? Well perhaps – there is a nest under our garden shed, and I had been building a path past them. How many cups of tea and biscuits had I swallowed without washing my hands?
Compared with many of the terribly ill people in Charing Cross, the medics gave me an easy time. But as a total physical coward, you just need to show me a needle or a tube and I know it is going to hurt. Despite the gentle, sympathetic treatment of some wonderful doctors and nurses, I was regularly left sweating and exhausted. Two lumbar punctures (try not to move, we don’t want to paralyse you, do we?), re-insertion of a drip for more steroids, the daily visit of the Vampire Lady for blood samples. The morning Drugs Run, at 7am, two hours before the relief of breakfast.
While on a drip I was presented with a mere sixteen tablets each morning, washed down by a swig of water and a biscuit. Then – bliss – the drip was removed. Next morning the truth: Now it would be 26 tablets each morning, five of them large, sharp and thick enough to choke an elephant. Enough! From now on it would be Jaffa Cakes at Dawn.
Slowly a bit of vision returned to my stricken eye. First the faintest of silhouettes – my knee outlined against a light as I lay on the bed one sweltering night. Later, unfocused coloured shapes. But when after two weeks a test showed only very weak vision in a thin crescent close to my nose, my hopes of a full recovery faded.
With nothing more to be done but wait for test results, after two weeks I was sent home clutching a sackful of tablets. Tired from lack of sleep and nightmares caused by drug side-effects and the general disturbances of hospital life and central London traffic, I looked forward to sleeping in my own bed. Getting home should have been a great relief – not least since my wife would no longer have a 60-mile round trip into London every day or two, or need to organise constant babysitters. In fact when we got home we both cried.
Away from the wide doors, spacious corridors and lifts of the brightly lit hospital I was a shambling ruin. Toys tripped me up, furniture and doors jumped out to hit me. I gave up for another sleepless night. Next day I rose late and tried a few everyday tasks – checked my vast backlog of email, phoned work to say I was home. But by lunchtime I was feeling terrible and went back to bed, alternating between bouts of uncontrollable shivering and fever.
My wife now became nurse between organising the children. By late afternoon, with the temperature on our ancient medical thermometer registering 103° F, she phoned the hospital, organised yet another neighbour to babysit, and drove me back through the evening rush hour into London.
By the time we reached the neurology ward a dense rash like sunburn had covered the whole of my upper body. Before being allowed to rest at 11 pm I had been given a third lumbar puncture, a second chest X-ray, an electro-cardiogram, and more blood tests. Finally the doctors decided it was a belated reaction to all the drugs.
For most of my first two weeks in Charing Cross it had been a point of honour to get up at 7.30 and share an awkward shower withe the canula, while the nurses sorted out the less able. Now I awoke drained, toyed with breakfast, made a half-hearted attempt to wash at 9.30. A trip to the hospital shop left me in a panting heap, and I gave up for another day, missing lunch for the first time. The standard medical thermometer shows a range of temperature from 35° to 40° C. For the next three days my temperature swung wildly between the two extremes, touching 35.2° and 39.8° within a few hours. After a change in drug regime the rash faded, the temperature settled down, and I was sent home again. I had by now been off work for almost 7 weeks, was still blind in one eye, and still had no clue as to the cause of the problem.
And so I find myself, nearly sixteen years on, on and off a long-term dose of steroids, back to square one. I still have one eye (the dead one long since biopsied and finally replaced), joined in 2002 by a dead left and inner ear, and in 2005 by Vitiligo.
