Why we do what we do

The work I do is a bit of a conversation stopper at dinner parties, not that I get out much. “So, what do you do?” This, after listening to scintillating conversations about designing beautiful buildings, creating cutting-edge art installations which incorporate fire and ecology or fascinating legal work involving historical lines of succession and modern politics. What do I do? I’m a paediatric oncologist. A what, you may ask? A doctor who works with children with cancer. And that’s generally where the conversation takes a bit of a dive.

“Isn’t it sad?” people ask. “Don’t you get upset when a child dies?” they say. “How do you cope?” they probe. “Do kids really get cancer?”

How do I answer those questions? Yes, of course it’s sad. I go to funerals and cry so hard I can hardly see to drive back to work. Of course I get upset when a child dies – who wouldn’t? How do I cope – who says I’m coping? How do you think I acquired these impressive muffin tops? Not from my love of food – it’s comfort eating, pure and simple.

But I don’t know these glittering, dinner party new “friends” well enough to bare my soul. So I give them my standard line – it’s really rewarding, it’s never boring, we save a lot of lives, those we can’t save we can help to facilitate a “good” death. That’s all true, but it’s also not.

If I’m really, truly honest, I do this work because of my own issues. There is nothing more vulnerable than a child with cancer and that touches something in my soul. These kids come into our clinic with a death sentence hanging over their heads and we either help them cheat death or we travel with them on the painful journey out of this world. It’s a bit like being present when a child is born. Birth is almost other-worldly. One moment there’s a woman in the room and a few attendants. The next, there’s a new mother, just created, and a whole new person who didn’t exist on this plane before. From that moment onward, the dynamic is forever changed. You can’t go back, you can’t unmake that child (much as sometimes we tired parents may fantasise) and your family structure is irrevocably altered. It’s the same with a child’s death – one moment there are a dying child, parents in the room and a few attendants, and the next there is a great gaping hole. The spark is gone. From that moment onward, the dynamic is forever changed. You can’t go back, you can’t remake that child or replace them (much as the broken parents may fantasise), and your family structure is forever altered. Who are the parents now? Are they still parents? What do we call them? There are words for other bereaved family members – widows, widowers, orphans. There is no word for a parent who loses a child, reflecting our society’s deep discomfort with the death of a child.

And strangely, that is one of the reasons I enjoy my work. There is something deeply fulfilling about helping a vulnerable child, about sitting in those deeply uncomfortable spaces while a family comes to grips with their new reality. I can’t boast and say I’m always good at it. I’m better with some people than with others, being only human and all. And one of the lines I’ve always fed people – ” we have good survival rates” – turns out not to be true. The more research I’ve done, the more I’ve learned that we in South Africa are no different to other low and middle income countries. Sure, we manage good rates with some cancers (some leukaemias, Hodgkin lymphoma and germ cell tumours, for example) but overall, our survival rates are just over half. And that is one of the many challenges of my job that I love. I want to be part of that solution. I want to banish that survival rate forever – to take it up into the seventies or even higher in my life time. I can see a number and I can visualise the higher number and I have dedicated myself to achieving that.

I can’t do this alone. Thankfully, I work with people who are dedicated, caring, detail-oriented, selfless and a whole lot more. These people are volunteers, nurses, social workers, doctors, pharmacists, researchers and others. And sometimes we play all of those roles. My favourite role is clinician-scientist, a doctor in the public sector who contributes to the body of research that will help us save more lives of kids with cancer.

This work is taxing, there is no doubt. ¬†I find myself constantly skating on the edge of burnout (compassion fatigue as it is known nowadays), pushing myself harder and harder until the elastic band has no stretch left. So I’ve made ¬†decision to dedicate some of my limited time to self-care and that self-care involves exercise, or cycling, to be more specific. And because I can’t quite get my head around fun for the sake of fun, I’m going to use this self-care time to raise funds for childhood cancer research in South Africa. More specifically, I’m riding the 94.7 cycle challenge to raise money to support the work that clinician-scientists are doing in the arena of childhood cancer research. There is no organisation in South Africa that is dedicated specifically to childhood cancer research, and my hope is that this one will be the one that catapults us into improving survival rates of kids with cancer in our setting.

CARE: cancer awareness, research and education will raise funds to help clinician-scientists to spend more time on clinical research. This project is the brainchild of a loose collaboration with Rainbows and Smiles, a group of phenomenal people dedicated to making the experience of having a child with cancer just that little less traumatic.

More to come on that another time – this post is long enough.

So be careful if you invite me to a dinner party now… I may just tell you what I do, smile, and ask you for money to help our society CARE for kids with cancer.