EVERYTHING THAT MAKES US HUMAN
You can’t trust me. At least that’s what I tell my juniors. Same as I say I can’t trust them. There is nothing in our line of work that doesn’t benefit from a second pair of eyes or ears. If a registrar shows me scans, I’ll double-check that they’re the right way round. Then I’ll get the registrar to do it. Maybe I’ll even get my scrub nurse to look as well.
It’s weird. At home I’m an untidy, slovenly mess. I’d sit around in my underpants and watch The Simpsons all day if I could. But at work I’m an anal freak. Mr Details-Upon-Details. I check, double-check, triple-check, quadruple-check everything. Then I say to whoever’s in the room, ‘You check it.’ Even fundamental things like which side of the head the tumour is on get the Spanish Inquisition.
‘Okay, scan says left side. Do you agree?’
‘Yes,’ says the scrub nurse.
‘You?’ I ask.
‘Yes,’ says the anaesthetist.
It’s not that I think the guys in the MRI department can’t do their job. I’m just not going to take anyone’s word for anything if I can check it myself. In our line of work there’s no going back. Patients don’t have the luxury of us trying again. If I take something out, it stays out. So I give the same pep talk to everyone who works for me.
‘Don’t trust me just because I’m your boss. If you think that I’m about to do something wrong, something stupid, you shout. You stop me. I’m relying on you. What’s more, so is the patient. Even teachers make mistakes. We’re a team. We succeed as one and we fail as one.’
It’s a heartfelt speech and a hard-earned one. When you become a consultant, it’s not like you suddenly know everything. You’ve done six, eight or ten years. You’ve reached an arbitrary level of skill. But it doesn’t stop there. The only way you grow is with experience. That means more operations, more patients, more learning – and, if you’re human, more mistakes. Every surgeon, probably every health professional, has a debit and a credit column. The trick is to learn from everything. To try not to make the same mistake twice.
I’m not sure I’ve ever done anything a colleague would say was ‘crazy wrong’. But I have made decisions that in hindsight could have been better. And one of those decisions I still think about to this day.
I said I never use the word ‘cure’ as a promise. But when we operate, we do need to try to remove as much of a tumour as we can. This is our job. Sure, if you’re too aggressive you can needlessly cause injury to a patient – which they may endure for the rest of their lives. But if you’re too timid, you will likely ensure that that life is needlessly short. So, knowing our limits is one of the most important things we learn. But it doesn’t come easily. There is a general rule that the older the surgeon gets, the more cautious he or she may become. Perhaps it’s natural as you collect a group of neurologically injured patients, sitting on your shoulders, as you progress through your career. But I was a young consultant at this time. Operating was the thing for which I’d trained for half my life.
If working on the potential child abuse cases in Toronto and back in Oxford had taught me anything, it was that you can never stop taking on other people’s ideas. I devoured medical journals from all over the world, spent every spare moment scouring the Internet for new breakthroughs or suppositions. When I first became a consultant I read lots of articles about the American health system. Obviously it’s predominantly insurance-based, but that aside their hospitals were reporting staggeringly high ‘success’ rates for brain tumours year on year. Our UK numbers, by comparison, were paltry.
I chatted it over with my mentor and senior consultant, Peter. ‘Why do you think it is?’
‘Well, obviously US hospitals are private, so they need to chase the dollar as much as any other business. Record-breaking success stories will get you funding, no doubt about it.’
‘But why are they so successful? Why don’t we have those numbers?’
He looked at me with a hint of disappointment. ‘Because in this country we don’t take risks with patients’ lives for the sake of money.’
He was being controversial, but I felt maybe he was right. The NHS paid my wages like it had paid his for decades. There was no pressure on us to ‘bill’ big numbers at the end of each quarter. We had one job and one job only: to save lives. And yet, article after article kept saying the same thing: ‘It’s amazing, man. These guys are curing people. All hospitals should be doing that.’ The stories really spoke to me.
I was young. I was ambitious. I was desperate to save the world. But the whole world didn’t need saving. Not then. Not that day. Whereas the little guy with the parents in my waiting room did. I swore I was going to do everything in my power to help him not just survive today, but every day. I was going to try to treat him. A cure would have been brilliant. I never told him that, I never promised his family that, but I explained to them that it was always a possibility.
‘It’s going to be okay,’ I said. ‘I’ve got this.’ And I really thought I had.
Famous last words.
I could just write about the cases where I’ve taken all the tumour out, the patient was absolutely fine and everyone lauded me as the great surgeon of our times. But those moments fade away, because however good your last case is you’ll always then get another one which goes wrong and that keeps you very grounded.
A ten-year-old boy who today is still one of my patients came in with a very short history of problems with balance, coordination and headaches. He had a scan locally and it showed a brain tumour at the back of the head, in the cerebellum. He was pretty unwell – struggling, actually – so he got sent straight across to us overnight. He was here in the morning when I arrived. Mum was with him. She couldn’t have been much older than twenty-five or twenty-six. Young and absolutely terrified could have described them both.
I explained what was going on, told them why they were here and said, ‘The tumour is only going to do more damage. We need to go in and take it out.’
Mum was horrified at the idea of her son’s head being cut open. The boy picked up on her reaction and started crying. I managed to calm them down, but stopped just short of saying, ‘If you don’t want to have the operation you don’t have to.’ Because, frankly, I didn’t think either of them were in a fit state to make that choice.
What I did say was, ‘Take some time to process it. It’s a massive deal, I get that. You’ll experience some pain and maybe some weakness and balance problems after the operation, as I’ve explained. And you’ll take a while to recover. But the alternative is that we do nothing and you’ll lose the ability to control your arms, your legs and eventually you will get sicker and sicker.’
And you die. Obviously, I didn’t add that bit, but Mum got the message. Reluctantly, she understood what had to be done.
‘Tell me honestly, though,’ she said, away from the bed. ‘What are the odds?’
I don’t really like to encourage false optimism, but from what I’d seen on the scans this was as close to a home run as could be.
‘I’d say the risk of anything going seriously wrong is low, perhaps five or ten per cent,’ I replied.
Any gambler would snatch off both arms for those kind of odds. But I’m dealing with parents. What do they care about the ninety fit and healthy kids running around if their child is in the ‘unlucky ten’?
‘Okay,’ Mum said, very apprehensively. ‘Do it.’
The tumour sat plum in the fourth ventricle, the area that controls so many vital structures and functions such as heart rate, blood pressure control, breathing, even consciousness. All the wiring that comes from the brain down to the arms, the legs, everywhere, goes via this tiny little area. The good news was that it looked pretty accessible. As, in fact, it was.
The surgery took most of the day, but I managed to get the tumour out with no complications or problems at all. Sometimes they’re like that. If you get a clear run at them you can grab the whole lot, fourth ventricle or not. Led Zeppelin get some of the credit. They supplied the soundtrack. But I felt good, too. In surgical terms we’d done a clean extraction. It couldn’t have gone better.
Bouncy as we all were after a successful op – hard not to be with ‘Whole Lotta Love’ blaring in the background – I wasn’t getting too carried away. I always need to see the patient awake and responsive before I light the metaphorical cigar. With this chap, though, I thought it was only a matter of time. But it turned out that it was a long old time.
When we tried to bring the patient round, the doctor from the Paediatric Intensive Care Unit (PICU) realized there was an issue with his conscious level. He wasn’t breathing for himself and wasn’t waking up at all. When I got to his bed I was surprised to see him still asleep. The soft whirring of the ventilator attached to his throat was all I could hear.
‘Has he woken up at all?’ I asked the ward doctor.
‘No.’
‘Is he triggering?’ I wanted to know if he was trying to breathe through the ventilator.
‘Nope. He’s not responding.’
‘Okay. Give it another couple of hours, then do me a favour and get him scanned.’
‘Will do.’
They ordered a scan. We waited as each slice of the sixty-four cross-sections of the imaging came up on the screen. The most important ones were the last ones, of course. But it looked great – a textbook result. On the images, that is. But I wasn’t treating the images.
He wouldn’t wake up, so we left him on the ventilator. Without the little tube sticking out of his mouth, he wouldn’t have been able to breathe at all. Obviously, the mouth is used for more than breathing. In order to feed him, the doctors had inserted a nasogastric tube directly into the stomach.
He was completely unconscious and remained so, without any anaesthetic medicines, for days, then weeks. He had a tracheostomy – a hole was cut into his neck, and into his airway, to allow a long-term connection to a ventilator. He had a PEG tube – a feeding tube that punctures the stomach and comes out through the abdominal wall, like a mini-Alien. This allows liquid feed to go straight into the stomach, and then the face is completely clear of any tubes. A face that does nothing.
What was the cause of this disaster? The scans looked great – no stroke, no bleed, not even any obvious large remnant of tumour. If there was any left, it was just a tiny bit. But there was no other explanation. Even if I didn’t know the reason for the present circumstances, it must have been me.
In my desire to treat the tumour, I must have caused, unnoticed, some damage to a microscopic but crucial vessel. To the naked eye it would have looked like a tiny vessel feeding the tumour. But it must have been one that went inside the tumour and out the other side and actually fed the brain, not the bad stuff. That’s why I was going so slowly, so carefully, taking off such tiny fragments at a time. But I had to be sure. I went over every piece of video footage from the operation and couldn’t find the crucial moment. I spoke to my assistant, the scrub nurse, the anaesthetist. They had no idea when it had happened. There had been no change in patient status throughout.
Peter could see I was torturing myself. His attitude was that I’d set out to treat a patient with a brain tumour and I’d achieved it. There will always be risks, potentially fatal ones, when you open another living being’s skull. Brains were not built to be toyed with. There’s a reason they come packaged in a solid bone case.
‘These things happen, Jay,’ he said. ‘The feeling of guilt will take time go away, but you did nothing wrong. You do your best. You use every tool at your disposal and every lesson you’ve learned. And you help where you can.’
It was a difficult conversation to have, but there was another even more painful. Telling the boy’s parents what had happened and what I thought had gone wrong was very challenging. But I also needed to explain things to my patient. It took weeks before he even started to show any inkling of waking up. As soon as he was conscious, I stood at his bedside and broke the news as gently and coherently as I could. It was heartbreaking watching his earnest little face stare up at me, unable to speak, unable even to nod or shout or scream.
As always in these cases, the family turned out to be stronger in some ways than me. They pointed out that at least their son didn’t have cancer anymore. I’d treated him for a tumour that would have killed him eventually, for which they were grateful.
It was true. He didn’t have a tumour. He didn’t have cancer. But he didn’t have any quality of life either. Everything that makes us human had been stripped away.
He underwent intensive rehabilitation. Eventually, he was transferred to a long-term, specialist rehab hospital. There aren’t enough of these, and he had to wait months for a space. From there, more months of difficult relearning of the most basic functions awaited him. He remained with a tracheostomy and PEG for several years.
That little boy is now fifteen years old. Over time some significant functions returned. He still breathes through a tube, but he can speak and has mobility in his arms and torso. I see him every year for check-ups and each time there’s a minuscule improvement.
The one thing that has altered, however, is his attitude. From the moment he was first able to communicate before leaving us after the operation, he blamed me, the hospital, his family – everyone around him for where he’d ended up. He was so angry and hated himself as much as us. We had to spend a lot of time helping a young man, just a child really, learn a whole new way of life. He couldn’t be expected to understand why we needed to do this operation. All he knew was that he had some headaches and came out of surgery basically paralysed … or ‘wrecked’ as he described it later on.
Over time, though, as he has got older, he has gradually learned to accept his situation – he’s still angry, of course, but he’s different. Now, when I see him and tell him what he knows anyway, ‘it’s a tough, long haul’, ‘you can’t give up, keep working at it’ and other rather useless sounding platitudes, I get more of a teenage grunt, a shrug, and he’s away in his wheelchair. Occasionally, he’ll give me the finger as he leaves my clinic. But at least I have been able to give him the good news. There has been no tumour recurrence – the bit I left behind must have given up the ghost and died off. It sometimes can do that. And it’s been long enough to now count him, officially, as ‘cured’. When I told him that, he said drily, ‘Yay, so I get to live even longer like this. In a wheelchair, not even being able to go to the toilet by myself. Thanks so much, Jay.’ Not much I can say back to that really.
He certainly changed me at the same time as I changed him, though not necessarily in terms of my surgical approach to cases because there was no fault in procedure. The crucial blood vessel that had been damaged could have been snagged at any point, not just when I was going for the brainstem. I guarantee that it’s happened to every neurosurgeon on the planet. If it hasn’t, then they aren’t doing enough cases. Or aren’t treating them properly. You can’t see things that don’t want to be seen.
It’s more about changing my attitude. I’ve grown to see the value of a quality life rather than just a long one. That little boy who never walked again would be dead by now, 100 per cent, without that intervention. As it stands, he’ll probably see out his parents, as all kids should. But here’s the question: would you prefer five years of a quality – ‘normal’ – life, knowing there’s a clock counting down somewhere, or would you rather have decades, albeit severely impaired?
It’s not a distinction they teach you at med school. Doctors are meant to heal. We fix. We patch up. We keep alive. I can’t remember the lecture where they discussed not doing anything and just watching the patient die. Maybe they teach it now, but not then.
Of the many, many cases I’ve worked on, a fairly high proportion have fallen into this area. I’ve found myself having the discussion with parents and, in some cases if they’re old enough, with the children. How much does quality of life mean to you?
Interestingly, a lot of parents can’t cope with the idea of putting a finite limit on their child’s life. They want me to go all-out, guns blazing, to rid their child of the killer disease. They just want their son or daughter to survive at any cost.
Others take the more pragmatic approach. Sometimes it’s just the fact of being in hospital for tests and appointments that swings the balance. One parent told me, ‘Doctor Jay, we really don’t want our daughter’s life to consist of coming in and out of hospital every five minutes. We want her to have a normal life for as long as we’re allowed.’
They’re not alone. Perhaps surprisingly it’s the patients who tend to agree with them most. Children are very good at knowing what they want. And most of them don’t want to have to keep seeing my ugly mug when they could be playing with friends, going to school, or arguing with their siblings like anyone else.
Complications happen. Over the course of thousands of neurosurgical procedures that’s inevitable. It’s human nature that those are the ones you tend to remember. They’re the images that flash into your mind as you’re about to doze off by the swimming pool on your summer holiday. They never really leave.
It’s not that you don’t remember the good-news stories. They just don’t stay with you. I don’t lie awake at night remembering all the lives I’ve transformed, all the little boys and girls wandering around who wouldn’t be if it weren’t for me and my team. I mean, who apart from the patients and their families cares?
Imagine: ‘Read all about it: Highly Trained, Highly Skilled Neurosurgeon With Loads Of Experience Saves Patient!’ It’s not exactly front-page news. It’s basically a man doing his job and not cocking up. Don’t we all strive to do that?
I know how easily the success stories are forgotten because I didn’t just work on one patient the day I overreached. On theatre days it’s standard practice to fit in two or three cases, usually one ‘big’ one, and couple of smaller, less time-consuming procedures. Something like reducing the build-up of fluid inside the brain can be over in eight or nine minutes. The album version of Lynyrd Skynyrd’s ‘Free Bird’ on my theatre sound system lasts longer than that. On that fateful week where an errant blood vessel changed the course of a boy’s life, I also worked on another little person. This time with better results. Certainly with better luck.
It’s another boy and he’s four years old. He has a tumour in the middle of his cerebrum, the big main part of his brain, next to the fluid space known as the ventricles. I’m hoping this one will be over quick enough so I can squeeze one more case in. Because we don’t have an operating list every day with our paediatric anaesthetist, we need to be efficient with our time, while being safe.
How long the procedure takes, though, isn’t up to me. We don’t even know what we’re dealing with. Scans show where the tumour is, but not what it is. I’ve decided that I won’t go full invasive immediately. ‘Let me drop a scope in, see what we’re dealing with, and try to get a bit for the pathologists first. If it needs to come out, I’ll get it out. If it can stay where it is, we’ll do that.’
It may seem strange to suggest that, but again it’s all about risk and benefit. It might be something that looks odd on the scans, but has been there for ages. The child presented with a seizure, caused by the lesion (the term we use when we aren’t sure what we are dealing with) irritating the brain next to it. That can be treated with anti-epilepsy medicines. It’s difficult to know for sure – some things can look different in real-life patients from the pictures in textbooks.
We have taken samples of blood already to see if we can detect any hormones. Some tumours secrete hormones that are basically diagnostic, meaning no biopsy is needed. The bloods were normal, but something still looked funny about this lump.
I only have to shave the smallest area of hair then drill a hole no more than about a centimetre in diameter. It just needs to be wide enough to take the endoscope. It’s another bit of kit that Peter never had growing up in neurosurgery. At least not anything this compact and reliable. The endoscope is basically a fibre-optic camera in a stiff probe. It has a channel within that lets me pass instruments down it, and so it can work in the middle of the brain without opening up the whole head.
I feed the scope through the hole, my eyes never leaving the large screen overhead. At my suggestion, the young trainee next to me calls out everything he sees. ‘Passing through the skull, dura, into the brain, into the ventricle.’
I rotate the camera. ‘What do you think?’ I ask. ‘Do we need to take the lid off and go in guns blazing?’
He studies the picture. ‘The tumour is pushing on the side wall,’ he says.
‘Good. What do you suggest?’
‘Biopsy? See if it’s malignant?’
‘And what else?’
He pauses. ‘I don’t know.’
‘Well, is the patient in immediate danger if the tumour is benign and we leave it?’
‘No, boss, it looks like it’s been growing without too many problems for some time. It is possible that it could go ages before we see serious implications. But we need to know what it is, to be able to plan the next steps. So I wouldn’t just pull out. I would defo do a biopsy.’
I pass a needle through the endoscope and enter directly into the tumour. It takes a sample of the lump, then junior rushes it up to pathology. The phone call comes twenty minutes later. We turn down Talking Heads, so I can hear.
‘Good news or the bad news?’
‘Bad,’ I say. ‘Always bad first.’
‘It’s malignant.’
‘Okay, and the good?’
This is exactly what I was hoping for – a type of tumour that can be treated without surgery. And one with a really good prognosis. I look at my assistant with a ‘What do you think?’ kind of face. He gives a thumbs-up. Correct answer.
I guess he’s possibly disappointed not to assist on some major skull-cutting and drilling. I would have been at his age. But even with the American dream of ‘cure, cure, cure’ still buzzing in my head, I’m happy to wrap up and pass my patient over to oncology. There have been enough Normandy Landings here for one week.