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 soon 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.
‘I’m not sure the treatment is working any more,’ I said. She knew.
‘I was worried you would say that. Aren’t you going to help us any more?’
‘Of course I will. You’re both my patients. But we used to have four or five months in between surgery. Now it’s down to five or six weeks. It’s not going to get any better. You need to consider whether you really want your last moments together, your final memories, to be in this place surrounded by our machines, our people, our terrible décor.’
I didn’t mention the fact that ‘Baby’ – as I still thought of him, even at the age of five – would be plumbed into those very machines. If I had a choice, I wouldn’t want to see my loved ones leave this world like that.
Eventually, Mum reached a conclusion. When he was all set to go home after his final op, I said goodbye to my little guy, believing it to be the last time I would ever see him. And it was. Sort of.
Seven weeks later Mum called me. Her son had died peacefully in his bed in our local hospice, surrounded by his favourite toys and superhero posters. It was heartbreaking to hear.
‘We’d be honoured if you’d come to the funeral.’
A funeral. For a boy I couldn’t save. How could I go when I’d failed the whole family?
I can’t think of many images in the world as distressing as the sight of a child-sized coffin. It goes against the very fabric of nature, of life and of hope. Being a stranger at a private function is awkward at the best of times. At a funeral, you feel like all the spare wheels in the world. The only people I knew were the family and they were there to bury one of them.
I was actually glad to be alone. If I’m honest, I felt like a fraud being there. I was the only one in the cemetery who had a chance of preventing the boy’s death. And I couldn’t. But that, it turned out, is not how everyone else saw it. Mum must have pointed me out to someone because a man came over, shook my hand and said, ‘Thank you. Thank you for everything you did.’
He wasn’t the only one. There was a procession of people, men and women, young and old, who wanted to show their gratitude for the time they’d got to spend with their little grandson or nephew or cousin or friend. ‘Without you, we’d never have met him.’
But he died, I thought. I couldn’t save him. Yet that’s not what anyone there was thinking. To them it wasn’t a life lost, it was five years saved. Where I saw professional failure, they only saw success, which made me smile on the way home. In between the tears.
And I made myself a promise. I will never attend a patient’s funeral again. It’s too tough, a price too high for me to pay.