Dialog Box

Rare Cancers Australia

Running for Rare: Josh's Story

For many of us, family is a very important aspect of life that holds a very special place in our hearts. They can be our support, our strength, and our drive, and while we may not be aware of how much we rely on them from day to day, it can become painfully obvious when they’re gone. 

These are the people who we cherish and love, but when they leave us, it can send us into a spiral of hurt, grieving, and feeling hollow. The trick then becomes finding a way to work through and process those emotions and using them to fuel something better.

In September 2019, Luke May lost his brother, Josh, who passed away after living with an incredibly rare and aggressive cancer, known as Hepatosplenic Gamma Delta t-Cell Lymphoma. He was diagnosed in August 2018 and fought strenuously throughout those 13 months, where it was believed that Josh was the only person in the world living with this specific strain of cancer. Josh battled tirelessly through numerous different treatments and did everything in his power to not let his diagnosis dictate the way he lived his life, such was his stubborn nature.

Image: Josh May at a family gathering

However, in the months following, as a way of dealing with the grief, Luke would go on to begin fundraising in memory of Josh, in order to do his part to help another family avoid the same outcome. An idea born in the last moments the pair shared together during Josh’s time in hospital. The May brothers would talk of their bucket lists, and what they still wanted to achieve, with Josh’s favourite being the idea of driving his beloved car across the Great Ocean Road. Luke had thought of driving the car himself, but he knew it simply was not the same and that his brother would only look down and shake his head. That is when the idea occurred to combine his own bucket list with that of his brother’s, and not long after, he started to put plans in place to prepare for what would be a very long journey.

The young man from Adelaide would then go on to set-up a fundraising page with an Australian cancer organisation, Rare Cancers Australia, who had helped his brother during the last months of his battle. Luke organised his fundraiser, deciding that he would complete the Great Ocean Road Marathon in August of 2020, continuing to raise awareness of, and fight against cancer, just as his brother before him. The marathon, spanning 44 kilometres across the beautiful views of the Great Ocean Road, would be physically exhausting. The physical nature, however, would be nothing compared to the emotional weight of the run, with the weight of two bucket lists now resting on his shoulders. Undaunted, Luke continued to prepare through regular and intense training.

Image: Luke May with his family of supporters

Tragedy would strike again, this time in the form of a global pandemic, and just like that, the event was cancelled. There would be no marathon along the Great Ocean Road, and a brother’s dream would have to be put on hold.  It was replaced with a virtual experience on the same weekend in May, with the event rescheduled for August, but that wasn’t enough for Luke. Or for Josh. Without that connection to Josh’s dream, It would just be a simple marathon, lost of the magic and hope that it represented. Needless to say, Luke did not give up and settle, rather he went back to the drawing board, and charted a new course.

Luke then planned a new run, that stretched from the heart of central Adelaide to the relaxing beach-filled west coast. More than that, however, the run consists of 11 key locations of importance to the memory of Josh, and in celebration of the person, he was.  While it wouldn’t be the run Luke had hoped for, it was still a chance to embrace Josh, this time with family and friends by his side to show their support.

Image: Luke May training for his marathon on the 23rd of August

Luke plans to start his marathon run at the place where Josh used to work for the last 8-9 years of his life, before returning to where it all began – Their Childhood home (with a small pitstop at Josh’s local).  The next leg of the journey takes Josh back to school at Immanuel, where Josh went for his whole schooling life, before graduating in 2010. After which, Luke will run to a truly important space, the skatepark, where Josh spent a lot of his time as a child and into his adult years.

The remainder of the journey will take Luke back up and down the Adelaide coast, as he visits his brother’s favourite bars, pubs, and restaurants, such as The Watermark. Josh used to frequent here, where he found a knack for playing poker, but would often leave with the rest of his friends after they had gone bust, often sacrificing his own game so that he wouldn’t have to stay there alone.  Before finishing up at The Marina Pier, a place where Josh would frequent on a Saturday night into the wee hours of a Sunday morning. To some, it may seem strange or benign to visit such usual hangouts, but those are the places we truly allow ourselves to have fun unapologetically, and such memories can hold more weight than imaginable to our families and our friends.

“Unless something bad happens to you or your family, you don’t know how short life is” is a quote from Josh May in 2019, but it is a lesson that Luke will carry forever. While his brother’s memory will continue to live on in the heart and mind of everyone he touched, through the hard work, determination, and fundraising of Luke, it will continue onwards that little bit more.

To support Luke and his marathon fundraiser, click here.

06 August 2020
Category: Patient Stories
Tags: adelaide, Cancer, Great Ocean Road Marathon, Hepatosplenic Gamma Delta t-Cell Lymphoma, josh, josh may, luke, luke may, Lymphoma, marathon, may, Rare, Rare Cancer, Rare Cancers, running,