Everything That Makes Us Human

by Jay Jayamohan

  He was in Germany. He was well established. He had a list of endorsements from previous patients on his website. He looked legit. Except he promised to cure cancer with crystals. Crystals.

  To call it pseudoscience is being generous. Some practitioners believe that you can create a healing energy field around a patient using semi-precious stones such as opals, amethysts and quartz. Others place them on chakra points on the body and wait for the magic to happen.

  Hogwash. Bunkum. Crap.

  Using some types of alternative medicines, I can understand. ‘Eastern’ medicine, including acupuncture, has a rich history (in my ancestors’ history, in fact) going back thousands of years, and has identified important pressure points in the body. It’s an area of alternative therapy that still bears exploration. In other types of treatment, the positive psychological benefits can help some illnesses. But a needle or a firm knuckle into a pressure point to help joint pain is one thing. A shiny stone balanced on top of the skin to treat cancer? Give me a break.

  Of course, that’s not quite what I told Mum. ‘How did you find him?’ I asked.

  ‘Google.’

  ‘And you’re sure he can help?’

  ‘Honestly,’ she replied, ‘no, I’m not. But can you promise me that you can?’

  She got me. Bang to rights. She knew I hadn’t and I wouldn’t promise her the outcome she wants. I couldn’t. Based on science and medicine I could give her odds that she didn’t like. I looked into her eyes and I knew she’d drop Germany in a heartbeat if I told her what she wanted to hear. My crime was not selling the product hard enough. I’m a doctor, a neurosurgeon, a father. I’m not a salesman. And I’m certainly not the snake-oil variety. But someone, it’s clear, was selling something that this wrecked woman was desperate to buy. Which of course is the point. She had to buy it.

  Perhaps I am being harsh on crystal therapy. Perhaps it does work. Perhaps it’s only a matter of time before it’s rolled out across the NHS. Perhaps, perhaps, perhaps. But you know what? Perhaps I’d have a different opinion if it were free.

  ‘Do you mind if I ask how you’ll be paying for this treatment?’ I enquired.

  She didn’t pause. ‘I’m going to put the house up for sale.’

  Wow. It’s worse than I imagined. ‘But where are you going to live? You have three other children. What’s going to happen to you all?’

  She smiled. ‘It’s not about money.’

  Oh no, I think, that’s where you’re wrong. Money is exactly what it’s about.

  I could have stepped in. I could have slapped down a long verbal pushback. I’m the expert. I’m Sir Lancelot Spratt. My word is law. To do that, though, I’d really, really need to believe I was offering the only viable solution.

  There have been several high-profile cases recently which have gone beyond conversations between Mum and Dad and their eminent Health Care Giver, and have ended up being Parents vs Hospitals not only in High Courts but in every court above them. It was important to follow these cases to identify repercussions in my own speciality. However, as much as I could have punctured my patient’s mother’s dreams of foreign salvation – and I was seriously tempted to – it wasn’t my place. At least so I thought.

  It still haunts me. I didn’t want to be the bad guy. I certainly didn’t want to completely pull the rug from under this woman’s feet. All I could do was emphasize again and again that her son was not going to survive because of these crystals, regardless of external promises. Her options as I presented them were to have the treatment we offered or let nature take its course – both choices were likely to end the same way. She would then bury her beloved son, the light of her life, and live a long, more sad but hopefully sometimes happy, life with her remaining children. Or, she could give all her worldly goods to some crook, then watch her son die and live an impoverished and self-flagellating life with three children who don’t know why they’re homeless.

  Nothing I said made a difference. She realized that her actions were going to affect the rest of her life and the lives of her children. But for her it was worth it.

  I wanted to say, ‘Your son’s as good as gone. Nothing can save him. But you can save his siblings. Surely it’s what he would want.’

  Any which way I explained, it sounded like I was completely stabbing Mum in the back. I couldn’t help it. The longer it dragged on, the more blunt I became. Not because I want to win – there are no winners here – but because I cared for my patient and his family.

  Their time at John Radcliffe ended a day after my patient was cleared for travel, ten days after his surgery. Which had given me ten days to test and probe Mum’s mettle. To her credit, she never wavered. She wasn’t aggressive or rude to us, she didn’t apportion blame. If anything she was exceedingly grateful for everything we’d done or tried to do. But we were just one cog in the wheel. She was ready for the next turn.

  It was about six months later that I received a letter from her. She thanked me, once again, for everything. She reported that the trip to Germany had been hopeful but ultimately unsuccessful. Her son had died peacefully at home three weeks earlier.

  The brightest possible spin I can put on the whole episode is that the whole family ended their time together as a unit with an amazing overseas flight to Germany. It would have been an adventure. One final road trip for the entire gang. Something to remember everyone by. Forever.

  Other than that, where were the positives? I knew the treatment wouldn’t work. I knew we – or rather they – would still have a seriously ill eleven-year-old with a fatal condition at the end of it. But what really bugged me, what totally got under my skin was this: where was the family going to live when they returned from Germany? They’d sold their house. The charlatan with the crystals had taken everything from them; not just hope and common sense, but the roof over their heads. He’d sold a dream that couldn’t be paid for, set a price that would affect so many other people’s lives. I get it if you’re a single parent with an only child. Maybe you’d risk everything. Walk over hot coals. Lay your own life on the line. But if you’ve got other children, other responsibilities, other dependants who need you for everything …

  To this day I ask myself: should I have stepped in? Should I have insisted that Germany never happened? Should I have enforced textbook NHS care on that young chap?

  My friends tell me not to beat myself up about it because it wasn’t my fault. They say that the mum made her decision and I was powerless to stop her. But the truth is I wasn’t. It was a choice not to interfere. Trust me, if I’d wanted to I could have caused problems for everyone. I’m a neurosurgeon, remember. I’m a disciple of James Robertson Justice. I have a God complex. And more importantly, I do have the power. Maybe I could have got an injunction, had her son made a ward of court, any number of things.

  But it’s not about me. It’s never about me. The patient comes first. Win, lose or draw, that is the only statistic that matters. And sometimes nobody wins.

  CHAPTER NINETEEN

  IT’S NOT YOU, IT’S ME

  What is success? I suppose it depends where you’re sitting. The majority of my patients are like whirlwind romances. A relationship that burns bright but brief. They sweep into my orbit, I analyse, operate, repair and send them back out into the world. And that’s it. In and out of my life, just like that. Perhaps I’ll see them in clinic from time to time. Sometimes I won’t. Their names, their memories, everything about them fades.

  It’s those other, special relationships, the ones that go on for a while, that you remember. They stay with you. That’s not to say they are the ones where we’ve made a mistake or something has gone wrong. Some problems are just unfixable. You can slow down the effects of a condition, but eventually you’re King Canute sitting on a throne in the sea, shouting at the tide to turn back. It doesn’t mean you’ve failed. Even if that’s how it feels.

  It took me years to understand that success doesn’t have to mean ‘curing’ or ensuring a patient lives
forever. Sometimes success is just about making a difference.

  Looking across my desk at the young girl in the wheelchair and her parents, it is hard to get too excited. She is frail, weak, exhausted and saddled with a horrible tumour. I’m not proud. I know I’m not her first ‘date’ – she’s come to me via a surgeon at another hospital – but I am sure I am going to be her last. The question is: how long do we have?

  She’s got a craniopharyngioma, which is a particularly pernicious type of tumour that targets the middle of the brain. The fact that it’s benign means nothing. It’s located in a part of the brain that’s very difficult to access and it is growing, albeit slowly. If it isn’t removed she will die. Looking at her notes, looking at her, I’d guess within the year.

  I explain everything to her. She seems chipper, she’s accepted her lot. Her parents, unusually, are fairly chilled as well. You can see they all enjoy each other’s company. If anything, coming to see me is a day out. It’s great to see. So many mums and dads spend their last days with their children arguing or shouting or crying or locked away investigating various spurious Internet ‘miracle cures’. It’s understandable. It’s human. But it’s destructive. I’m sure they all look back and go, ‘I wish I’d just taken the opportunity to enjoy being with my son for the little time we had left.’ Come to think of it, that’s good advice for me to take as well. And for you.

  This family seems to have nailed it. They’re taking each day as it comes and making the most of every second. I already love them. Which is why it’s so disheartening for me to have to say, ‘I honestly don’t think we will ever be able to reach all of the craniopharyngioma. But if you’ll let me, I’m willing to give it a damn good try.’

  ‘That’s all anyone can do,’ Dad replies.

  I operated multiple times. I spent days probing and burning and melting and vibrating and cutting. I wasn’t doing anything her previous surgeon hadn’t attempted, I’m sure. The difference was that month after month after month after month I was still trying. And I was prepared to keep at it for a long, long time, again and again. Whatever it took, as long as it was helping her.

  Three years later, we were almost back to square one. Every time I grabbed a slice, a new piece grew back. It was like playing Whac-A-Mole, but rather more serious. She had radiation therapy which slowed the growth, but still it kept coming. We pretty much threw the kitchen sink at her and never made any headway. At best we were standing still, which actually was fine for my patient.

  I watched her grow over those two, three, four, five years. She never got ‘better’ but she never got worse either. We were doing just enough to keep her stable, at a level she could manage. To watch her interact with her parents was a thing of wonder. They all carried on like nothing was wrong, like they weren’t on the front line in an unwinnable war.

  They enjoyed life and they revelled in it. Every day was an opportunity. A gift from God if they were religious; a new day if they weren’t.

  After every couple of operations we’d have the same chat: ‘I’m going to keep on doing this for as long as you want me to. But there will come a time when perhaps the pain and discomfort and recovery time from surgery isn’t worth it any more.’

  ‘We know,’ Mum replied. ‘And we’re grateful. But we’re okay for now.’

  And they were. We all were. Until that moment when we weren’t.

  It was our sixth year together. Things had been rocky for a while. The patient had stopped treading water, stopped standing still. Each operation, as far as I could discern, was taking more and more out of her. She was recovering, but much more slowly than before.

  It’s the same with some chemotherapy patients. The horrors of the treatment see a proportion of them quit the programme midway. They’d rather enjoy a few ‘healthy’ last months than endure a cycle of monthly torture/sickness/recovery/happiness/torture/sickness/recovery/happiness.

  This was the stage I felt we were reaching with my young patient.

  ‘You know I’m willing to go again,’ I said. ‘You know I will always keep hunting. But I think the time has come to ask: is it worth putting her – all of you – through it?’

  I didn’t have to explain. Everyone in the room knew where we stood. For seven years we had kept a deadly tumour at bay due to regular invasive interventions. If we’d skipped any single one of those procedures, the craniopharyngioma would have taken hold completely and the girl would have been dead within five or six months. We kept fighting because she kept enjoying life. But now I wasn’t so sure. Neither were her parents. And neither was she.

  ‘One more try?’ she asked, her voice feeble but clear.

  ‘Of course,’ I said. ‘One more try.’

  When we met six months later, everyone knew it was for the last time. And do you know what? We were all comfortable with that. I wasn’t lying to the family when I said I’d fight their corner forever. I would. But after a while, once I’d realized that I was doing them no service perpetuating a young girl’s suffering, I would have to recommend an end. And that was the point we were at. I knew it. The parents knew it. The girl knew it.

  Honestly, though, even at that final clinic you would never have imagined what they had all been through. The mood was so light. Everyone so positive. I watched the little girl – not so little now – stare out the window as I was talking to her mum and dad.

  ‘What are you looking at?’ I asked.

  ‘I’m just watching the way those birds are flying,’ she said. ‘They’re funny.’

  Without further treatment, she finally succumbed to the tumour’s unrelenting putsch six months later. I wasn’t notified at the time, but a few weeks after that I noticed a familiar name in my clinic diary. When Mum and Dad came in alone, I knew what had happened.

  I always encourage families to stay in contact with me after the passing of their child. As I’ve said, they are my patients as much as their son or daughter. My care – my interest – doesn’t end with the completion of the surgical options. Mental wounds take longer to heal than physical ones.

  ‘Thank you for letting me know,’ I said. ‘She was a wonderful girl. I’m sorry I couldn’t do more.’

  Mum was already in tears. Dad was close. ‘We just wanted to pass on a message,’ he said. ‘She wanted you to know – she wanted us to tell you.’

  I could see he was struggling. ‘Tell me what?’ I asked.

  ‘To tell you that she was grateful for everything you did. Everything you tried.’ He looked at his wife for support. ‘And to apologize for making you feel bad that she never got better.’ She may as well have said, ‘It’s not you, it’s me.’ It didn’t stop me crying. Usually I wait until the patients or parents have left. This time I’m not sure I got away with it. To have that fortitude and even the inclination to think of others when you’re literally at death’s door was amazing. Her parents were just as impressive. There wasn’t a hint of anger or regret or disappointment. Not directed at me, anyway.

  ‘You gave us seven more wonderful years with our daughter,’ Mum said. ‘We will never be able to thank you enough.’

  Nobody knows how they will react in adversity. ‘Fight or flight’ is a common phrase. But that’s a very restrictive choice. The human mind is capable of so many other responses. As doctors you see a kaleidoscope of them, every shade, every nuance. Good or bad you have to deal with them all. And I think I have.

  A different relationship was formed with an expectant family on another occasion. Mum had had a twenty-week standard ultrasound scan, and Baby was found to have a cyst on the brain. I spoke to both parents and gave them counselling about what could happen after the birth. The condition was serious enough for them to legally consider not proceeding with the pregnancy, but the decision had to be theirs. Based on my information they decided they wanted to go ahead. I could understand why. They were young – still in their teens. They were excited. They thought they had the world at their feet.

  I attended the Special Care Baby Unit s
oon after delivery, as I try to do if I think there’s a chance that emergency action might be necessary. From what I saw, we had a couple of days to play with. We could have been ready within a couple of hours if needed, but after months of stress and anxiety, Mum and Dad deserved some down time with their new one.

  The cyst was in a very inaccessible location, smack in the middle of the brain. Tom Cruise in Mission: Impossible couldn’t have airdropped in there without setting off the alarms. I kept the family informed of the risks.

  ‘I won’t know for sure until we get going, but from the scans alone I can’t imagine I’ll be able to get at more than a portion of the cyst.’

  ‘What does that mean?’ Dad asked.

  ‘Probably that we will need to do this again before the year is out.’

  It was just as I suspected. We put a lot of hours and effort into getting close to the cyst. Fortunately, Baby responded well to the treatment and we said goodbye – until the next time. The second procedure went just as well. Dad drifted off after about six months. They weren’t married, and he found it too difficult to cope, I guess. That’s the charitable view. The other view is this baby was getting in the way of his social life. I have seen it happen quite a few times with fathers. The maternal bond is undoubtedly the stronger one. Only once have I seen a mother disappear. That’s another story.

  Over the course of five years, I operated another seventeen times on this boy. I ended up having to put a shunt in to drain some of the cyst, and then open up other secondary cysts that appeared. For most of those times I was happy to continue. Each operation bought that baby and young mother a chunk of time to live and love and grow together without any problems. Eventually, though, the magic began to wear off. The law of diminishing returns had raised its head. The gap between procedures was getting shorter and shorter. After the nineteenth operation, barely six weeks since the last, I spoke to the mum.