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Episode 83: Robin Cancer Trust

It is a lovely gift when people around the world reach out wanting to have their story shared with our Charity Matters community. With 1.6 million nonprofits in the United States alone, it is hard to even begin to share the stories we have here. It is a rare moment when we have conversations with our friends across the pond. Since cancer knows no boundaries and affects so many regardless of where you live, I wanted to share this amazing organization and family with you.

Toby Freeman’s family was living a lovely life until his oldest brother Robin was given a shocking diagnosis of cancer at the young age of 23. Twenty million people will also receive that diagnosis each year around the world but not all of them will act to serve others. Join us today for a beautiful conversation on the power of love, family, community and legacy. We all have the power to make a difference and Toby’s story is a beautiful reminder of what happens when we do.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Robin’s Cancer Trust does?

Toby Freeman: The Robin Cancer Trust is the UK’s only testicular and ovarian cancer charity. We cover both of those cancers  and we do education, awareness and support in schools, colleges, businesses all across the country, delivering life saving awareness talks.

We’ll go in talk to the students and have all of our very funny and very big prosthetics, a really fun engagement tools.  We pull up the headmaster, make them check themselves in front of the class in a safeguarding way. They have a pair that they can check and then we go out to festivals and  universities reaching students and young people there. We also reach millions of people online with our campaigns. And then we do support for our community as well. So we do free Cancer Support packs for anyone affected by those cancers anywhere in the UK. Then we send out additional resources to support them during that incredibly difficult time of their life.

Charity Matters: Tell us a little about your Family Growing Up?

Toby Freeman: I would say my parents are just so unbelievably selfless.  There’s a national charity called Bliss, and my mom headed up our local chapter.  I remember packing things and her talking to us about it and why it was so important. My dad used to help with loads of local organizations, and they’d always get really involved in anything we were doing.

I’m the youngest of three boys, so there was a lot to be done, but they were at everything we were doing sports and school wise. They were at theater productions, helping us. They we did Boy Scouts, which obviously a big part of that is giving back.  I just have this feeling of my parents selflessness was something I’ve always been very aware of. 

Charity Matters: What was the moment you knew you needed to act and start Robin’s Cancer Trust?

Toby Freeman:  I always say experience breeds empathy. I think you have to go through something to be able to empathize with it. When these big, traumatic things that can happen in life, a lot of empathy comes out of them.

Rob was my elder brother.  Rob and I were very, very close when we grew up.  He was my best friend as well as my elder brother.  As we were getting older, he used to ferry me around and look after me and make sure I got to football on time. Rob was in his prime of his life.  He was 23, fit, gym guy, healthy clean eating, training all the time and looking after his body. He was very health conscious and he was diagnosed with a stage four mediastinal germ cell tumor.  He had a testicular tumor in his chest that got to the size of a grapefruit wrapped around his heart and his lungs. It just hit us absolutely out of nowhere. 

I just watched my brother go from the prime of his life to an absolute shell of himself both mentally and physically.  By Christmas time we were  thinking, what’s just happened to us? How has this just happened to us?

We were sat around the table, and we’d made a promise to Rob that we’d never let him just be a photo on the wall. It was never our intention to put him at the forefront of everything. What we did realize was, if someone as health conscious, as fit and active as Rob was could be diagnosed at that later stage and ignore signs and symptoms, then there was something to be done.

During that entire year, we couldn’t find any information about the type of cancer he had. We searched Google, and there was just nothing, and we just felt so alone and untethered.  We didn’t want another family to feel that way.  My dad’s a very pragmatic man. He said, “If we are going to do something, we need to research it thoroughly, understand what the problem is and how to fix it.  We need to create something that isn’t a grief reaction. Something that is actually needed and can outlast us.” So from day on we wanted to be able to step away from this at some point. We want other people driving this. There’s been a beautiful 12 years of seeing this grow .

Charity Matters: What are your biggest challenges?

Toby Freeman: I think the biggest challenge was navigating the grief. I think two things saved me during that time. First, my now wife treated me with a lot of TLC and gave me the kick up the butt to go to grief counseling.  Second, the charity because it gave me something to focus on when that cup was empty. Actually doing something good, putting something positive out in the world, even if that’s just thinking about a project you could do. It just helps fill that cup up every day.

Charity Matters: What fuels you to keep doing this work?

Toby Freeman:  A very patient partner. Everyone grieves in such different ways in a family unit, right? No one talks about how this is really difficult. We did have this unifying thing to be positive about during that time. So I think that was really powerful. My father’s still on the board, and he loves being involved. My mum, my brother have stepped away for various reasons over the years. This has been something that tethered us, because it’s so easy to become so untethered in how everyone’s feeling in those moments

Charity Matters: Tell us what success you have had and what your impact has been? 

Toby Freeman: How do you measure awareness? We were education and awareness based. That’s why we started because no one was covering that. We listened to our community and realized they needed more support.  We provided that service. Awareness is ethereal. You don’t know we’re teaching life skills effectively. We’re asking a 15 year old say, check yourself and if you found something, go to a doctor. But that could be 20 years down the line.

We’ve seen a dynamic shift in the UK to fund as being much more amenable to anecdotal feedback. Real life stories having a tangible impact. We have feedback forms for all of our talks  I can track how many people are landing at certain places on the website. So if I am at certain events, you can have certain links and see 300 people from that event landed on that website. I know that’s an impact. What action they’re taking in the comfort of their own homes, in their baths, in their bedrooms? I don’t know. What we  struggle to track is what is the end impact? Because you can’t be a charity that goes to someone newly diagnosed and say, “Did our resource help you? “

Charity Matters: If you could dream any dream for your organization, what would that be?

Toby Freeman:  Being unemployed, because if someone cures cancer, I don’t have a job. I’d be the happiest unemployed man in the world.   I would say the biggest goal for us is reaching every young person in the UK at school level.  That’s where we’re going to have our biggest impact because we are teaching life skills.

If we also work with all the hospitals in the UK to make sure that anyone diagnosed has access to our free Cancer Support packs and ongoing resources. Then from both points, from an awareness and a support point, I think we have done our jobs.  

Charity Matters: What life lessons have you learned from this experience?

Toby Freeman: That’s something I reflect on quite often. We  have a podcast called Thrive Against Cancer,  where I get to interview people affected by cancer at all stages of their journeys.  I think that gratitude for life takes some people almost forever to understand, to just be able to step back and know what is important and what isn’t important.

How lucky am I to have a happy and healthy family?  So I’ve got no complaints whatsoever. And I think that’s the biggest lesson,  I am grateful to be reminded of at least every two weeks when our podcasts come out. You just get all of this information from everyone else and you can’t sweat the small stuff when you know how much big stuff there is out there in the world.

Charity Matters: How has this journey changed you?

Toby Freeman: Someone once asked me in an interview, “Do you think Rob would be proud of us?” I don’t think he’d be able to recognize me in a good way.  I think when you lose someone, you want to take the best parts of them as well.  My brother was a very responsible man. He really focused on his health and fitness. And for me, over the last few years, that’s really become really important. Putting myself first.  I realized I couldn’t tell other people this without living it.

I’ve just taken it feels like a 180 the way I was. I was very young. I try not to beat myself up. I didn’t handle that year of Rob being ill, Rob’s death, I didn’t handle that very well. I am so lucky to have the people around me that got me out of that and put me on a good path. The charity has given me purpose, and that has defined me as a person that’s helped me be responsible.

Having soaked up so much life experience and being around people that have been through even more, is it just has completely defined who I am.  I’m so grateful for that and to have that opportunity to be who I am.  I’m really proud, and I think my brother would be too.  

Charity Matters.

 

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