I found for a long time I didn't want to have that conversation. I didn't want to talk about it because I was afraid of what people would think of me and also I didn't want people to feel sympathy. I didn't want them to feel bad and so for a long time, I would say it was okay. It was fine let's just move on let's not talk about anything cancer.
Toby Peach, Theatre Maker, Cancer Survivor & Patient Advocate from the UK.
I'm here today because I was talking and presenting a theatre show that I made about my experience of having Hodgkin's lymphoma when I was 20 and then again when I was 22. I made this show because I was interested in the fact I didn't understand what cancer was and I wanted to understand what it was and the more and more I looked into it the more and more I realized that this world that I'd kind of experienced was so foreign to me in a way. I felt that I needed to know what it was about and more importantly about how I was fortunate enough to come through it. So, I made a theater show which was trying to talk about hope and I think that's one of the hardest words to talk about in the world of cancer.
Reacting to the News of Cancer Diagnosis
In all honesty it was just completely shock and the fact that my reaction was that the thing where I lose my hair kind of showcases the fact that I was worried about something which is so mundane. Your appearance when you're facing something like cancer is really not that important, it's something that obviously that's the kind of the reaction. I'd made the mistake going to the hospital on my own and I’d driven myself as well which was stupid, because I just wasn't able to cope. I had this moment of shock, then I was in floods of tears and then I had to call my mom to tell her that it was cancer, but it was going to be okay because it was Hodgkin and Hodgkin's is the most curable of the blood cancers.
She always reminds me that I would tell her there's good news and bad news, bad news is it's cancer the good news is, it's caught early and it's really it's the best one you can get, they keep telling me which is a strange thing to tell people. She'd come and she had to get a neighbor to drive her over so that she could come and drive my car back. It was a bizarre moment and it's one of those things where I look back on it now and there was a nurse he was present and I speak to her like I have done quite a bit since and I know that is something that changes your world entirely. And it can never go back to what it was, and you have to accept it.
Cancer at the Intersection of Early Adulthood & Autonomy
I fell into a strange gap, I think which was that I was just hitting 20 and I was at university and I'm at that age where I'm starting to be independent and I'm starting to be able to stand on my own two feet. I think when I was diagnosed I still desperately wanted to keep that. My family were incredible, they were kind of the support network around me and my partner as well. I think what happened was that actually, I had the option to get in this gap between the youngsters and the adults and I didn't really want to be a teenager, I was older than that and I also didn't want to be---- I wanted to be seen as an adult. I don't think it was right for me like I probably could have got more from the fact that in the UK we have Teenage Cancer Trust. They have units in hospitals and I could have gone to one of those units and been around and have a bit more relaxed kind of atmosphere I’m sure. I didn't push for that, because actually in my mindset, I just wanted to get it done and I think the less interaction I could have with other people the better.
A day in the Life of Cancer as a Young Adult
I was going to the hospital once every fortnight for the first time of having cancer I would go and have my appointment in the afternoon. I would drive back from my University have my appointment, get the chemo in the morning, rest up Friday Saturday. Drive back Sunday to my University and go back to school and be at University Monday yet for another two weeks. For me actually the thing was, I want this little impact on my life but cancer turned out to be this thing that was taking away my education as well as like my friends my partner.
The Importance of a Support System while Fighting Cancer
I was so fortunate that people around me allowed me to do that my age, I was at drama & acting school, and my teachers were brilliant, they allowed me to have that Friday off and as long as I look after myself and say I have picc-lines in as well as other kind of tubes and stuff. They were brilliant because they knew that, that was what I needed. The second time when I relapsed I had to be an inpatient but because it's a strange thing of being an inpatient. I was in (what felt) like confinement for six days. That was repeated how many times, I can’t remember how many cycles you have of that but because I was in confinement again, I didn't want to see anybody else like my friends would come in and maybe its because the option wasn't there for me and I wasn't able to have that interaction. Again I was try my best to have as little impact on my life and I think because I had in my mindset because it was Hodgkin's and because of the fact that this treatment they were very positive that they caught it early the second time. I just wanted to get it done and I didn't want to talk about it ex. just asked me about the hospital food ask me about that that's fine.
Normalizing Difficult Conversations
I found for a long time I didn't want to have that conversation. I didn't want to talk about it because I was afraid of what people would think of me and also I didn't want people to feel sympathy. I didn't want them to feel bad and so for a long time, I would say it was okay. It was fine let's just move on let's not talk about anything cancer. I think that's also the way that society kind of used cancer because we're very scared about it and very scared about what it can do. because We're afraid to talk about death, we're afraid to talk about disease and I guess health care comes into that as well. I just think it's about having conversations, allowing people to know what people can experience and how they can face it.
Outlook on Life Post Cancer
I guess for me, one of the biggest takeaways is the fact that I'm mortal and I think embracing the times when I have a bad day or maybe somebody else is having a bad day and trying to embrace the kind of feeling of knowing. I know that this moment can be bad and actually to us but time passes and that when it's like it's so often it's not a full stop in our lives. I feel very fortunate enough that I've come through my treatment and I'm able to be outside, that's what a big thing for me is. I remember the confinement was a big and not confinement but also when not just being locked in a room, but when you actually can't leave somewhere.
Maybe because you've got tube in or you're tired and for me that's one of the big things is, it's about being grateful for that, being grateful for being able to leave my room. Being able to walk down the corridor without getting out of breath and I'm a runner and so there's this thing about being grateful for that. Being able to do things that are perhaps not like I do like to go and do some traveling and things like that but sometimes it's just about this the small things and knowing that I can walk out like I did this morning. I can come to America and be here for a couple of weeks, I think that's the thing for me. Looking at those moments that like I perhaps might have taken for granted.
Advice to Patients: Coping with the Emotional Side of Cancer
I think it's the acknowledgement that it's okay to not be okay, and that's really important to acknowledge because there is a kind of an expectation that we just carry on and that we just keep going, when we face a trauma. There's some shame in looking at that experience and understanding it and taking it on in a way. For me, there were times when I wasn't okay but I blocked that out and I tried to pretend that I was okay and I'd say, I'm fine, I'm okay, I'm fine. That was me just protecting myself, protecting others and actually what I needed to acknowledge.
I definitely think there's a bit of a masculinity thing in there of being yes I’m a man. I don't need to talk about my feelings, but which was just to acknowledge that I wasn't okay and I was finding it hard to cope with the emotional side to having treatment. We can sometimes believe the post treatment and say you've gone through the hardest part which is having the chemotherapy or whatever treatment you've had. For me, post treatment was actually was harder, it was harder for me to understand because I wasn't able to contemplate the things that were left. The side effects of a treatment, etc. If we can acknowledge that side of it as well we can acknowledge the people and mental side of their health as much as their physical is so important. That there are times you'll feel bad, there are times when you won't feel great and that's okay. To try and focus on those moments, it's not the full stop as well. There are times when it will change as much as you were before that there is a change that things will change and believing in that chance of change is really important.
Maximizing Impact Through Patient Advocacy
I think I'm interested in ways that we can make the patient of today and of the future more comfortable, that's about looking at ways that we're treating patients and how to get better treatments. Also about post treatment and making sure that we're able to cope with the mental health side of cancer diagnosis and finding ways that we can make that. I say the patient of today and of the future because what I'm striving for is about the person who perhaps hasn't got a connection to cancer at the moment but when they're 70 that they might have an experience themselves or a partner, sister or anyone.
It's trying to look at if I can do something that means that their experience is more easier, even for somebody going through it 70 years down the line. I mean, how amazing it would it be if somebody is able to say I'm going to be able to talk to somebody who is going through cancer because of something they remember from a performance or a theater piece or some kind of story that made me understand what somebody might go through and maybe understand what questions might be arising for that person and so that they can cope better with and beyond cancer.
The Impact of Storytelling in Healthcare Journey
It's been the privilege really and I acknowledged that as a privilege to be able to reflect to my job as a theatre maker. Being a storyteller has been about looking at how I help others tell stories. I worked quite a lot with young people and giving them the tools to be able to understand what it means to be a young human and able to share that with people. That's what theatre is about is about, it’s about looking at what it means to be human and for me I think that has given me the opportunity to be able to understand what it meant to be a young human who'd experience cancer and be able to put that into a language and story that would be accessible to audiences.
To go, oh yeah I can sit through this this young man talking to me about cancer for 50 minutes, because I'm not sitting there being bored I'm engaged in a story and something that allows you to kind of dive into that world. I'm very privileged that I was I was studying community theater at drama school when I was diagnosed. A lot of my work since then has been about looking for what is my community. How my community are my going to support with my work or make accessible with my work and I realized that the young adult cancer community was a group that I felt a connection with and I was passionate about working for, and it meant that I was able to go wow this is something I can offer.