“ YOU ARE NOT ALONE. The support and love you need is out there – the internet capability and technology we have available today means that no one has to go through this alone, no matter where you are in the world.
Toby Freeman is a Germ Cell mAss Kicker from “across the pond” in the United Kingdom! After his brother passed away from Testicular Cancer in 2012, he lead the creation of the Robin Cancer Trust (RCT) to raise awareness of germ cell cancers (both testicular and ovarian cancers) in 16-35 year olds. He is currently the Chief Executive Officer of the RCT. Toby has a very strong background in event coordination in the United Kingdom, planning events for Pasani Leisure and Seatrade, UMB EMEA. We were very fortunate to catch him in some down time and ask him a few questions about his organization and what makes him tick.
mK: Thanks Toby. The organization bears your brother’s name. How did your brother find out about his diagnosis? What were you thinking as a sibling?
TF: Rob was diagnosed after presenting with swelling and serious discomfort in his left arm, which turned out to be a blood clot from his tumor in his chest. He’d also been ignoring several symptoms for a matter of months that we either didn’t know about (night sweats) or that he didn’t think were serious (a dry cough for a couple of months in a non-smoker, which he thought was simply a virus). He was diagnosed with a stage-4 Mediastinal Germ Cell Tumor at aged twenty-three.
As a sibling I was in a state of shock. My older brother, Rob, who was the most active, healthy-living orientated chap I knew, had been diagnosed with cancer?!? How could this be? My family has a history of heart disease and diabetes, not cancer – how can a twenty-three year old be diagnosed with cancer? What could we do to help him? Had anyone else been through this (and survived)? So many questions, so few answers…
mK: So that was why you started the Robin Cancer Trust?
TF: When Rob was diagnosed we swiftly realized that there was a lack of information available to those affected by this rare form of cancer. Throughout Rob’s journey with cancer, both he and the family struggled with the isolation of feeling like the only people in the world who were going through his particular diagnosis and treatment.
A couple of months after Rob passed, the family was together at my Mum and Dad’s house and we started talking about how unjust it felt that Rob had been taken from us so soon, and the conversation went along the lines: ‘f**k it, something good has to come from this’… That defiance and stubbornness was the seed that grew into the Robin Cancer Trust – just over four years later and here I am writing this blog about our journey!
First and foremost our mission is to raise awareness, reduce embarrassment and save lives through early detection. Our hope is that no other family has to go through what we did alone.
mK: What kind of events/campaigns do you do?
TF: Our events and campaigns are all aimed at young adults (15-40 years). This allows us a great scope to raise awareness in a variety of ways. As a small charity we are mostly focused in the South-East of England and we have a very strong following in our hometown of Colchester where we organise three live-music events throughout the year and have been privileged to be the chosen charity for local festivals, half-marathons and carnivals. We also attend several Universities fresher’s fairs every year in the region.
Our campaigns are split into the two most common forms of germ cell cancer – testicular and ovarian cancers – through our #TalkingBollocks and #YoureNotOvaryacting campaigns. We raise awareness online (through social media and our website), in print, and at events.
mK: Social media is very powerful! What motivates you?
TF: Perspective. When I’m feeling down or demotivated I take a minute and remember why I am doing what I’m doing, how lucky I am to be doing it, the amazing things I’ve done and the people I’ve met because of it and all the people I will help because of it. Mix that with a run and some loud music and I’m back on track!
mK: Who is your personal hero or are your heroes?
TF: I believe you can find something great in almost everyone, hidden strengths, knowledge or perspective that they might not event know they have. A lot of the time what people consider normal for them is really inspirational for others. I feel honored to know many people I would consider heroes, even though most of them would laugh at me for saying so!
mK: What makes you laugh, cry, angry?
TF: My fiancé makes me laugh more than anyone, she’s my best friend and partner in crime – no one else would put up with me haha! Music brings my emotions to the surface, especially songs with significant meaning to my family and me. I get angry at limitations, both in time and resource – as they hold us back from helping more people.
mK: What would you say is the most interesting thing you’ve ever done?
TF: Am I allowed to say founding The Robin Cancer Trust!? I’ve learnt more on this journey than I had in a lifetime beforehand. I’ve travelled the world and met survivors, caregivers, advocates and researchers from across the globe. I’ve jumped out of planes, ran marathons and cycled the length of the country. I’ve written blogs, given interviews, been on TV and connected with thousands of people online because of the Robin Cancer Trust. I can’t wait to see what more interesting things the future holds.
mK: Very cool! What is the toughest challenge a survivor faces?
TF: Answering that question from my brother’s perspective, I’d have to say isolation. I saw my brother become a shell of his former jovial, outgoing self during his treatment – I can’t imagine what it was like for him, but it was crushing to witness as a family member. I just wish I knew then what I know now about the resources that are available to help young adults affected by cancer.
mK: Let’s get to know you better… What is your guilty pleasure?
TF: Sweet Potato Chips (that’s Yam Fries to you haha) – I could eat them ALL day.
mK: Here’s a strange question for ya… If time travel were possible, what one event would you like to go back and change?
TF: I’d be too scared of the butterfly-effect to go time traveling! The past helps shape the future, we learn, we grown and we change. Unfortunately in life we often find that tragedy can be the catalyst for great things. All I know is that the Robin Cancer Trust has helped save at least two lives since we founded, and had a huge impact on many more – for that I wouldn’t, couldn’t, change a thing.
mK: So what is next on your agenda?
TF: I’m in the middle of wedding planning! We’ve set a date for early 2017 so there’s a lot of money saving and DIY wedding planning to get done! We’ve got a huge year ahead of us with the charity, but it’s really enjoyable to have another focus in my life (and one that I’m not allowed to forget about haha!) I can’t wait!
mK: Congratulations! Any advice for people or loved ones that get daunting diagnoses?
TF: YOU ARE NOT ALONE. The support and love you need is out there – the internet capability and technology we have available today means that no one has to go through this alone, no matter where you are in the world.
mK: Tell us something about yourself that people probably didn’t know… anything.
TF: I am a massive comic book nerd. I have a collection of around 400 graphic novels displayed proudly in my living room (much to my fiancés annoyance!) I love the storytelling, the imagery and the escapism that comics allow – you can fully immerse yourself in them.
mK: Any parting words for all the mAss Kickers?
TF: Keep kicking mAss! You’re an amazing community helping so many people – you’re all heroes to me.
Toby Freeman: Comic book fan boy, wedding planner, sweet potato chip addict, social media meastro, experienced event organizer, and driven young adult cancer advocate. Thanks for doing the interview Toby! Check out the Robin Cancer Trust to see what they are doing to promote Germ Cell Cancer Awareness.