Sarcoma real lives
LUKE RYAN AGED 11
At the age of 11, Luke Ryan was diagnosed with an osteogenic sarcoma growing from the back of his left knee. He remembers the treatment as ‘A lot, a long time and just beyond horrendous’. He had 12 months of chemotherapy with five different agents during three-to-five-day hospital stays with a week-and-a-half break between each one.
‘Three months in, I had a seven-hour limb salvage operation that left me with a full knee replacement, a slight leg extension and half a dead person’s femur, and without most of my quads. It was not fun.’
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.’
LUKE RYAN AGED 22
Luke Ryan was 22 when he was diagnosed with sarcoma for the second time – in his right arm. He had just finished an arts honours degree at Melbourne University and was part way through a second degree in law.
‘I was diagnosed on a Saturday night and by Monday morning I had been wrenched out of my cosy existence and forced to move back to the family home in Perth. Suffice to say, I was less than enthused by this turn of events.’
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.’