by Henry Marsh
‘It’s just like this with the police force,’ the patient said. ‘Everything’s computerized and we are constantly being told what to do but nothing works as well as it used to . . .’
I rang Gail but she was unable to solve the problem. She gave me the number of the X-ray department but when I tried it I only got an answering machine in reply.
‘Excuse me,’ I said. ‘I’ll go upstairs to see if I can get one of the X-ray secretaries to help.’ So I hurried past the waiting patients in the subterranean waiting room and ran up the two flights of stairs to the X-ray department – it is quicker than going by the lifts and without a condescending voice telling me to wash my hands.
‘Where is Caroline?’ I shouted as I arrived at the X-ray reception desk, a little out of breath.
‘Well, she’s about somewhere,’ came the reply so I headed off round the department and eventually I found her and explained the problem.
‘Have you tried your password?’
‘Yes, I bloody well have.’
‘Well, try Mr Johnston’s. That usually works. Fuck Off 45. He hates computers.’
‘Why forty-five?’
‘It’s the forty-fifth month since we signed onto that hospital’s system and one has to change the password every month,’ Caroline replied.
So I ran down the corridor and down the stairs and past the waiting patients back to the consultation room.
‘Apparently the best password is Fuck Off 45,’ I told the patient and his parents, who were still waiting to hear his possible death sentence. They laughed nervously.
I duly typed in ‘Fuck Off 45’ but, having thought about it, and having told me that it was ‘checking my credentials’ the computer told me that the password was not recognized. I tried typing in Fuck Off 45 in many different ways, upper case, lower case, with spaces, without spaces. I typed in Fuck Off 44 and Fuck Off 46 but without success. I ran back upstairs a second time, followed by the curious, anxious eyes of the patients in the waiting area. The clinic was now running late and the number of patients waiting to see me was steadily growing.
I went back to the X-ray Department and found Caroline at her desk. I told her that Fuck Off 45 did not work.
‘Well,’ she sighed, ‘I’d better come and look. Maybe you don’t know how to spell Fuck Off.’
We went downstairs together and returned to the consultation room.
‘Now that I think of it,’ she said. ‘It might have become Fuck Off 47.’ She typed in ‘Fuck Off 47’ and the computer, having checked my credentials – although they were really Mr Johnston’s – to its satisfaction, finally downloaded the menu for the X-ray department at the patient’s hospital.
‘Sorry about that!’ Caroline said with a laugh as she left the room.
‘I should have thought of that myself,’ I said, feeling very stupid, as I downloaded the patient’s brain scans.
It may have taken a long time to get the brain scans onto the computer screen but it did not take long to interpret them. The patient’s scan showed an abnormal area – a little like a small, white ball, pressing on the left side of his brain.
‘Well,’ I said, knowing what had been preying on his mind for the last two weeks, and more particularly over the past fifty minutes, ‘it doesn’t look like cancer . . . I think everything’s going to be OK.’ All three of them sat back a little in their chairs as I said this, and the mother reached out for her son’s hand, and they smiled to each other. I felt considerable relief myself. I often have to reduce people to tears as they sit opposite me in the outpatient room.
I explained to them that the tumour was almost certainly benign and that he would need an operation to remove it. I added a little apologetically that the operation had some serious risks. In a reassuring tone of voice I explained that the risk of leaving him paralysed down the right side of the body – as though he’d had a stroke – and maybe unable to speak – was ‘not more than five per cent’. It would sound very different if instead I said ‘as much as five per cent’ in a suitably grim tone.
‘All operations have risks,’ said his father, as almost everybody does at this stage of the discussion.
I agreed, but pointed out that some risks are more serious than others and the trouble with brain surgery is that even if little things go wrong the consequences can be catastrophic. If the operation goes wrong it’s a one hundred per cent disaster rate for the patient but still only five per cent for me.
They nodded mutely. I went on to say that the risks of the operation were very much smaller than the risks of doing nothing and letting the tumour get bigger – eventually even benign tumours can prove fatal if they grow large enough as the skull is a sealed box and there is only a limited amount of space in the head.
We talked a little more about the practicalities of the operation and I then took them round to Gail’s office.
The next patient was a single mother with back pain who had undergone two ill-advised operations on her back in the private sector. There is a well-recognized syndrome called ‘the failed back syndrome’ which refers to people with backache who have undergone spinal surgery which has not worked (and which in many cases seems to have made their pain worse).
She was thin and had the haunted expression of somebody in constant pain and deep despair. I learned a long time ago in the outpatient clinic to make no distinction – as some condescending doctors still do – between ‘real’ or ‘psychological’ pain. All pain is produced in the brain, and the only way pain can vary, other than in its intensity, is how it is best treated, or more particularly in my clinic, whether surgery might help or not. I suspect that many of the patients in my clinic would be best treated by some form of psychological treatment but it is not something I am in a position to provide in a busy surgical outpatient clinic, although I will often find myself having to spend longer talking to the patients with back pain than those with brain tumours.
She started to cry as she spoke.
‘My pain is worse than ever, doctor,’ she said, her elderly mother who was sitting beside her nodding anxiously as she spoke. ‘I can’t go on like this.’
I asked her the usual questions about her pain – a list one learns early on as a medical student – questions as to when she got the pain, whether it went down her legs, what type of pain it was and so on. With experience one can often predict the answers just by looking at the patient and as soon as I had seen her tearful, angry face as she dramatically limped down the corridor behind me to the consultation room I knew that I was not going to be able to help her. I looked at the scan of her spine which showed plenty of space for the nerves, but also the excavations and crude metal scaffolding carried out by my surgical colleague elsewhere.
I told her that if an operation fails to work there are two diametrically opposite conclusions to be drawn – one is that it wasn’t done well enough and needs to be done again, the other is that surgery wasn’t going to work in the first place. I told her that I didn’t think that another operation would help her.
‘But I can’t go on like this’ she said angrily. ‘I can’t do the shopping, can’t look after the kids.’ The tears started to stream down her face.
‘I have to do that,’ her mother said.
With patients like this, when I know that I cannot help them all I can do is sit quietly, trying to stop my eyes drifting away out of the window, over the car park, over the hospital’s perimeter road, towards the cemetery on the other side, as the patients pour out their misery to me, and wait for them to finish. I then have to find some form of words with some expression of sympathy to bring the hopeless conversation to a close and suggest that their GP refer them on the Pain Clinic with little hope that their pain can be cured.
‘There is nothing dangerous about the situation in your back,’ I will say, taking care not to say that the scan is essentially normal, which it often is. I will del
iver a little speech on the benefits of exercise and, in many cases, losing weight, but this advice is rarely well-received. I do not pass judgement on these unhappy people – as I did when I was younger – but instead I feel a sense of failure and also occasionally of disapproval for surgeons who have operated on patients like this, especially when it has been done – as is often the case – for money, in the private sector.
The next patient was a woman in her fifties who had undergone removal of a large benign brain tumour twenty years earlier by a colleague who had retired many years ago. Her life had been saved but she had been left with chronic facial pain. Every possible form of treatment had failed. The pain had developed because the sensory nerve for one side of her face had been severed as the tumour had been removed – an occasionally unavoidable problem for which surgeons use the word ‘sacrifice’. This leaves the patient with severe numbness on that side of the face, an unpleasant phenomenon though one with which most people come to terms. A few, however, do not and instead they are driven almost mad by the numbness, the Latin medical name for this, anaesthesia dolorosa – painful loss of feeling – expressing the paradoxical nature of the problem.
This patient also spoke at interminable length – describing the many unsuccessful treatments and drugs she had had over the years, and the uselessness of doctors.
‘You need to cut the nerve doctor,’ she said. ‘I can’t go on like this.’
I tried to explain that the problem had arisen precisely because the nerve had been cut, and told her about phantom limb pain, where amputees experience severe pain in an arm or leg which no longer exists as a limb in the outside world but which still exists as a pattern of nerve impulses in the brain. I tried to explain to her that the pain was in her brain and not in her face but the explanation was lost on her, and judging from her expression she probably thought I was dismissing her pain as being ‘all in the mind’. She left the room as angry and dissatisfied as she had been when she had arrived.
One of several patients with brain tumours whom I saw for regular follow-up was Philip, a man in his forties with a tumour called an oligodendroglioma whom I had operated upon twelve years earlier. I had removed most of the tumour but the tumour was now growing back. He had recently had chemotherapy for this, which can slow down the rate of recurrence but both of us knew that the tumour would eventually kill him. We had discussed this on previous occasions and there was little to be gained by going over it again. Since I had been looking after him for so many years we had got to know each other quite well.
‘How’s your wife?’ was the first thing he said to me as he came into the room and I remembered that when we had last met a year earlier I had been phoned by the police in the middle of the conversation to be told that my new wife Kate, whom I had met a year after my first marriage ended, had just been admitted to hospital with an epileptic fit.
‘Nothing to worry about,’ the policeman had said, trying to be helpful. I had brought the consultation with Philip to a rapid conclusion and rushed off to the A&E department in my hospital where I found Kate looking quite unrecognisable with her face covered in dried blood. She had had an epileptic fit in the Wimbledon shopping centre and bitten straight through her lower lip. Fortunately she had not suffered any major harm and one of my plastic surgical colleagues came and stitched up the laceration. I arranged for her to see one of my neurological colleagues.
It was a difficult time – many brain tumours first declare themselves with epileptic fits as I knew all too well and I also knew well enough from my experience with my son that my being a doctor did not make me or my family immune to my patients’ diseases. I did not share these thoughts with Kate and told her that the scan was just a formality, hoping to spare her some anxiety. Kate is a best-selling anthropologist, with no medical background, but I had underestimated her powers of observation. She told me later that she had picked up enough neurosurgical knowledge to know that brain tumours often ‘present with’ epilepsy. We had to wait a week before she had a brain scan, during which we carefully hid our fears from each other. The scan was normal: there was no tumour. The thought that so many of my patients have to go through the same hell of waiting for the results of scans as Kate and I did is not a comfortable one – and most of them must wait much longer than a week.
Touched by Philip’s remembering this, I told him that she was fine and that her epilepsy was currently under control. He told me that he was continuing to have minor fits several times a week, and that his business had gone bankrupt because he had lost his driving licence.
‘Lost a lot of weight with the chemo though,’ he said with a laugh. ‘I look a lot better, don’t I? Made me pretty sick. I’m alive. I’m happy to be alive. That’s all that matters, but I need to get my driving licence back. I get only sixty-five pounds a week in benefits. It’s not exactly easy to live on that.’
I agreed to ask his GP to refer him to an epilepsy specialist. Not for the first time, I thought of the trivial nature of any problems that I might have compared to my patients’ and felt ashamed and disappointed that I still worry about them nevertheless. You might expect that seeing so much pain and suffering might help you keep your own difficulties in perspective but, alas, it does not.
The last patient was a woman in her thirties with severe trigeminal neuralgia. I had operated on her the previous year and vaguely remembered that she had then come back a few months later with recurrent pain – the operation occasionally fails – but I could not remember what had happened afterwards. I fumbled through the notes unable to find anything of help. I prepared a speech of apology expecting her to look miserable with pain and disappointment. Now, however, she was quite different. I expressed surprise at how well she looked.
‘I’ve been absolutely fine since the op,’ she declared.
‘But I thought the pain had come back!’ I said.
‘But you operated again!’
‘Did I really? Oh I am sorry – I see so many patients that I tend to forget . . .’ I replied.
I pulled her notes off the pile and spent several minutes failing to find something about her having had a second operation. Out of the inches of paper a brown tab stuck out – one of the few documents that the Trust has designed that is easily located.
‘Ah!’ I said, ‘Look. I may not be able to find the operating note but I can tell you that you passed a type-4 turd on 23 April . . .’ I showed her the elaborate hospital Stool Chart, coloured a sombre and appropriate brown, each sheet with a graphically illustrated guide to the seven different types of turd in accordance with the classification of faeces developed, according to the chart, by a certain Dr Heaton of Bristol.
She looked at the document with disbelief and burst out laughing.
I pointed out to her that she had passed a type-5 next day – ‘small and lumpy, like nuts’ according to Dr Heaton – and showed her the accompanying picture. I told her that, as a brain surgeon, I couldn’t give a shit about her bowel movements although the Trust management clearly considered it a matter of deep importance.
We laughed together for a long time. When we had first met, her eyes were dull with pain-killing drugs and if she tried to talk her face would contort with agonizing pain. I thought how radiantly beautiful she now looked. She stood up to leave and went to the door but then came back and kissed me.
‘I hope I never see you again,’ she said.
‘I quite understand,’ I replied.
ACKNOWLEDGEMENTS
I hope that my patients and colleagues will forgive me for writing this book. Although the stories I have told are all true I have changed many of the details to preserve confidentiality when necessary. When we are ill our suffering is our own and our family’s, but for the doctors caring for us it is only one among many similar stories.
I have been greatly helped by my wise agent Julian Alexander and my excellent editor Bea Hemming. How much worse the book wo
uld have been without their guidance! Several friends kindly read drafts of the book and made invaluable suggestions, in particular, Erica Wagner, Paula Milne, Roman Zoltowski and my brother Laurence Marsh. Throughout the twenty-seven years of my time as a consultant neurosurgeon I have had the good fortune to have Gail Thompson as my secretary, whose support, efficiency and care for patients has been second to none.
The book would never have been written without the love, advice and encouragement of my wife Kate, who also came up with the title, and to whom it is dedicated.
A NOTE ON THE COVER
Brainscape 18 is an etching from a drawing by Susan Aldworth. It was made on location in the neuroradiology suite at the Royal London Hospital on 3 January 2006, where Aldworth was Artist in Residence from 2005 to 2008. Brainscape 18 shows a patient undergoing a cerebral angiogram to locate an aneurysm in their brain.
www.susanaldworth.com
COPYRIGHT
A W&N ebook
First published in Great Britain in 2014 by Weidenfeld & Nicolson
This ebook first published in 2014 by Weidenfeld & Nicolson
© Henry Marsh 2014
The right of Henry Marsh to be identified as the author
of this work has been asserted in accordance with the
Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this publication may be reproduced, stored in a
