Gay Justen Schafer tells his story of surviving testicular and colorectal cancer and why he now runs a charity screening women for the disease
Balls, arse, tits and the vajayjay. Sounds like an average night out on the town.
These four things all play a central part of my life – but not as they might in the life of the average gay man. The commonality on all these topical items for me is cancer (buzz kill I know).
In October 2006, I had been in the UK for only three months when I was diagnosed with stage two testicular cancer, at the ripe age of 26. I knew there was a family history of cancer, but ironically, having spent a year beforehand working in the Middle East and Africa with women who had breast cancer, and telling people cancer does not discriminate, I thought I was immune.
Those that know me know that I have a well-developed (and at times, inappropriate) sense of humor. Throughout my life, when faced with difficult situations, my first reaction has usually been to make a joke about the situation, and then it became more manageable. I’m sure there are hours of psychoanalysis to be had from this, but we’ll leave that for happy hour. Fact is I liked my balls. They had done me well up to that point. So instead of focusing on the severity of the situation ahead, I asked the ‘important’ questions, like will I be able to drink on chemo? What about my hair? And when can I get an implant?
I got through it, as that’s what I had to do. I didn’t have any other option. And I was lucky. The cancer was diagnosed fairly early, and I had access to good care (say what you want about Britain’s National Health Service).
When my hair started growing back, I couldn’t help but think of the women who I worked with just a few months earlier prior to moving to the UK, and the stoical courage they showed in time of adversity. After my treatment finished and I was given the ‘all clear’ by the doctors, I wanted to see what treatment was available for people in developing countries. I found there was very little. In fact in some places, it was non-existent. This couldn’t continue. After years of preparation and research, and with my own cancer in remission, I set up The Odysseus Foundation in late 2010.
I’m often asked why I set up The Odysseus Foundation, a charity to screen women in developing countries and socially-excluded communities for breast and cervical cancer, and empower them to know the options available to them locally. Why did a gay bloke who had testicular cancer set up a breast and cervical cancer charity?
The answer is simple: breast and cervical cancer affects more than women.
There are already lots of great charities out there working to find a cure for cancer. But The Odysseus Foundation is the only UK charity addressing the prevention and detection of breast and cervical cancer in developing countries and socially-excluded communities around the world.
Whilst infectious diseases dominate the health care and social agendas, there is a lack of recognition of cancer as a major public health priority. In fact, more people die from cancer than from AIDS, malaria and tuberculosis combined.
Perhaps setting up a charity during a global economic crisis wasn’t the best idea, but I am continually amazed by people’s warmth and generosity, and willingness to support our work. We are actively supporting screening and awareness in Eastern Europe, with plans to expand our outreach further into Africa later this year through the construction of cancer screening centers in Sierra Leone and Tanzania. The need is great.
Most recently, my work came home with me in the form of stage one colorectal cancer. But again, I was diagnosed early. (In fact, I’ve just come back from my radiotherapy appointment or as I like to call it: ‘tanning’). My latest diagnosis is a powerful reminder of not only the efficacy of treatment in the UK, but the value of the support networks that I have developed and that are made available to me. And this has confirmed my belief that the work we’re are doing is so important.
Embarrassment doesn’t kill. Cancer does. So I’ve got a fake ball and have had more people peering up my backside this year than I would’ve liked. But I’m alive. Cancer doesn’t discriminate. Frankly cancer is a bitch. So, please, be sure to check yourself. And if you want to get involved in the work we’re doing, please get in touch.
Cancer isn’t something I really ‘got over.’ Cancer teaches you many things… that you have strength you never knew you possessed and that there are angels, sometimes in unlikely places. For many of us it awakens a drive to give back, which is the sweetest gift of all.
Justen Schafer has served on charity boards in Washington DC, Greece, NYC and London. He is available to speak at events. Find out more about him on his website here. Visit the Odysseus Foundation site to learn more or offer support.