Sarcoma real lives

Even in a close and comparatively well-off family, Luke says it’s hard to overstate how tough that year was for everyone. ‘Mum became my full-time carer, in hospital with me from morning until night. Dad would split his time between the hospital he worked at and the hospital where I was being treated, and my brother, who had just begun Year 12, was essentially abandoned in the middle of the most important year of his life. Still, we survived, because that’s what you do, and our bonds were only strengthened in the face of such hardship.’

As Luke had essentially missed the first year of high school, by the time he returned to school it was hard for him to be a part of the groups which had formed in his absence. ‘It was certainly very difficult for a while,’ he recalls, ‘and I remained a peripheral figure for the rest of my schooling because of it. I retained a core of friends, but especially in the early years after treatment, my disability meant that I couldn’t really take part in the games favoured by others in my year. Fortunately my great passions were reading and video games, so they were easy enough to pursue, even absent full use of my leg.’

Following treatment, Luke was monitored for five years and then the month before he finished school, his doctors told him he was cured.

‘I cried when they told me I was done, although I can’t quite remember why. It didn’t feel like joy, just survival.’

This time, however, the treatment was much easier to tolerate with two nine-week batches of chemotherapy and six weeks of radiotherapy. Three to five days in hospital became two to three hours. ‘I was energetic, healthy and for the first time in months no longer crippled with pain. Chemotherapy made me feel substantially better than I did before. It was really something.’

Surgery was supposed to be part of the regimen, but the only possible option was a forequarter amputation of Luke’s right arm and was something that he simply couldn’t face.

Luke has been clear of sarcoma for seven years now and there are plans for his monitoring to be wound down. ‘It was a conversation we spent a long time thinking we might never be able to have,’ said Luke. ‘The future is wide open. I’m happy, my life is full of friends and laughter and I make almost no concessions to my past illnesses. As a stand-up comedian and writer I’ve even built a fair career out of what happened to me in 1997 and 2007. Now though, I’d like to start talking about something else.’

Receiving a rare cancer diagnosis not once, but twice, has made Luke acutely aware of the importance of medical research. ‘The change in treatment methodologies between my two tumours and the impact that had on my lived experience cannot be overstated – in the first, an intolerable barrage of crippling chemotherapy that almost killed me. In the second, a well-measured regime that allowed me to continue on with my life largely unchanged,’ said Luke. ‘That happened in just 11 years. Incredible things can be achieved, so long as we continue to work towards them.’