Cancer researcher runs 2,400km to Santiago in tribute to son


Johan Swinnen of KU Leuven is undertaking the feat of endurance to raise money for cancer research, and is spreading a message of hope for all cancer patients as he goes

Extreme pilgrimage

As a cancer researcher, professor Johan Swinnen was all too aware of the challenges that lay ahead when his son Pieter was diagnosed with a brain tumour six years ago. Pieter has since recovered, and to honour his son and all cancer patients, Swinnen is undertaking an extreme running pilgrimage to Santiago de Compostela in Spain.

Swinnen is a busy man. His day job is as head of the oncology department of the University of Leuven (KU Leuven) – which consists of about 300 researchers – and he is vice-president of the Leuven Cancer Institute (LKI). When we meet, he has just returned from Boston in the US, where he promoted a project on prostate cancer funded by the Movember Foundation.

“At the LKI, we bring the different worlds of basic and clinical scientists involved in cancer research together at events and to work on projects,” says Swinnen. “Uniting their expertise is essential in improving cancer diagnostics and treatments.” Swinnen himself focuses on the role of lipids – which are essential for the communication between cells and their energy provision – in cancer.

As well as his busy professional schedule, 51-year-old Swinnen also runs 30 kilometres a day during the week and 70km a day at weekends. He’s training to keep a promise he made in 2011, when his 13-year-old son was diagnosed with a brain tumour. The tumour was already at an advanced stage, giving Pieter only a small chance of survival.

“That was a slap in the face, but as a family we focused on the chances of survival, no matter how small they were,” says Swinnen. “We went through the whole process step by step, celebrating every small success, like a positive brain scan.” 

Two marathons a day

Swinnen also vowed to himself that he would carry out an extreme feat if Pieter was still alive after five years, the point at which the risk of recurrence is considered to be significantly reduced.

Pieter had to go through a series of very intensive treatments – chemotherapy, surgery and radiotherapy – but he made it. Thanks to physical therapy, he no  longer needs a wheelchair, though he still has severe balance disorders, which means he needs a special bike with three wheels, and he suffers from nausea. “He still vomits every morning,” says Swinnen.

He had to give up his dreams of becoming a civil engineer or technical draughtsman

- Johan Swinnen

While Pieter used to be among the best pupils in his class, his intellectual capacities have now been reduced to such an extent that he will never be able to obtain his secondary school diploma. “He had to give up his dreams of becoming a civil engineer or technical draughtsman,” says Swinnen. “But he’s now working on his creative drawing skills, by designing cartoons and comics, so he can still use his drawing talent.”

To pay tribute to his son’s courage, and that of other cancer patients, Swinnen is preparing the feat he vowed to do five years ago. And it will be extreme.

On 21 August, he will set off from the University Hospital of Leuven (UZ Leuven) for a trip during which he will run the equivalent of almost two marathons each day, on average. In total, he will have to run about 2,400km, crossing the Pyrenees. After about a month, he should arrive in the pilgrimage town of Santiago de Compostela, where his son and wife will be waiting.

“For centuries, pilgrims have taken the route to Compostela because they are searching for something in life,” says Swinnen. “My journey will symbolise the search for hope against cancer, a hope that is justified because I know that we are making big process in cancer research.”

Messages of hope

On his trip, Swinnen will carry a backpack full of messages about people’s experiences with cancer – mostly from patients, former patients and people who have experienced the consequences of the disease. The messages can be sent online or by post.

My journey will symbolise the search for hope against cancer. I know that we are making big process in cancer research

- Johan Swinnen

Swinnen received messages full of anxiety and frustration but also full of hope and gratitude. “For example, I got a message from the family of a cancer patient whose dream it was to go to Compostela but who passed away before he could do it,” he says. “They feel his wish is now partly coming true through my trip.”

After he arrives in Compostela, a Flemish literary performer will set to work with all the messages, using them to create one text that will constitute a message of hope.

Swinnen is not taking the challenge lightly. He is an experienced long-distance runner, and has taken part in several marathons over the past 10 years. He has also completed ultra-running events, longer than the traditional marathon length of 42km. His most extreme achievement so far is running non-stop for 300km, from London to the source of the Thames.

He will be helped along the way by renowned colleagues like Peter Hespel, a professor in exercise physiology and sports nutrition, and thanks to sponsors he will have excellent equipment at his disposal. During the trip he will be followed by a small team in a motorhome, in which he will sleep each night. 

Not alone

Even so, the road ahead will be strewn with obstacles. “I’m worried about injuries – the smallest ache can have big consequences, as I will have very little time to recover,” Swinnen says. “The unpredictable weather can also have a big impact and the accumulation of tiredness will be difficult to deal with.”

He will run much of the route on his own but will be joined at various points by supporters, who will run or cycle along with him. At the start of his journey, his son and a group of supporters will accompany him for a while from Leuven’s town hall, where mayor Louis Tobback and KU Leuven rector Luc Sels will wish him good luck.

I’m worried about injuries – the smallest ache can have big consequences, as I will have very little time to recover

- Johan Swinnen

An important goal of the initiative is to raise funds for cancer research. Several organisations, companies and individuals have already set up fund-raising activities and made donations. Pieter has drawn a cartoon figure of his father – running with a backpack – which has been printed on bags and school notebooks sold by the UZ Leuven to raise money.

Swinnen will also be followed by camera crews on his road to Compostela, for the TV programme Telefacts on VTM and a documentary made by a film student. He is also writing a book on the history of cancer, his son’s story and his pilgrimage. The book, published by Borgerhoff & Lamberigts, will be called De lange tocht (The Long Journey) and should be available shortly after he reaches his destination.

Photo: Johan Swinnen prepares for his epic pilgrimage with son Pieter
© Rob Stevens/KU Leuven