The Complex Dynamic of Cancer Diagnosis at Early Adulthood | Toby Peach

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.

Toby’s Story

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.


Equality, Quality, Respect in Health Care | Alan Manning

We talk all the time about consumerism in healthcare and quite honestly it's one of my biggest frustrations because I think consumerism is an entitled approach for the 1%. I know many people who consumerism for them is wherever the bus stops or wherever the subway stops. They're going to go where the insurance is covered,


Alan Manning is the Executive Vice President of Planetree International Inc..

Alan’s Story

What makes me passionate about health care actually is my daughter, I joined Planetree seven years ago now because I wanted to help change healthcare. I thought that the system was broken and I went on a national search looking for an organization that I thought could really make a difference, and I found this great place called Planetree. Because ten years ago, this past May my firstborn daughter was born and at two days old I got a call from my wife saying there's something wrong with Katie's heart. At four days old, Katie had her first open-heart surgery and over the next six months Katie had five open heart surgeries and four heart catheterizations before unfortunately she passed away when she was six months old.

So, actually next month is a ten year anniversary of my daughter's passing. It's actually really moving yesterday to be here and meet our founder of Planetree on the same day that this time 10 years ago sitting at my daughter's bedside in the last month I'll ever meet her.  My passion and my drive is my daughter, she's my inspiration for what I do. More than that, it's the people I met during her care, I met some amazing, amazing people who provide incredible care to patients, but I found a system that wasn't supporting them particularly well and I wanted to get involved and help and make a difference.

Surviving the Death of a Child

I tell people all the time, I'd be lying if I said it was a greater purpose, I miss her, I wish it never happen. I wish I never got involved in healthcare, I wish I didn't have to know what I know. But these are all, we all got paths, every one of us, so my story is my story, you have a story, everybody out there has a story and we just have to go on the journey we're on. I'm fortunate to have two wonderful boys who are eight and six and remind me of their sister every day and my wife and I started a non-profit in her honor and we helped critically ill kids in pediatric ICUs and the story I always tell people is when my daughter was born, I thought that she changed the world.

My heroes are Nelson Mandela and Martin Luther King and Mary Robinson the first female president of Ireland. When she got sick, and she passed away I didn't know that, that would happen but a couple of years ago, I got word of a girl back in Ireland where I'm from, who was seven years old and wasn't able to walk. Her name was Katie just like my daughter and my organization was able to sponsor her to come over to the United States to get a spinal surgery that allowed her to walk for the first time. So When I said that my daughter was going to change the world I was right in some small ways so she did have an impact on somebody else's life so her legacy lives on.

The organization is called Kisses from Katie Inc. and we help children, families and caregivers of kids of  pediatric ICU because although our outcome with our daughter wasn't what we wanted, we were actually very lucky. We had the financial resources, we had the education, we looked and sounded like the doctors, so we got along with them. We saw many people who didn't have the same access so we started an organization to help those people and today we do simple things. Our motto is to take the edge off and we do simple things like we pay mortgages for families who are getting ready to lose their house or pay their rent. We've bought washing machines for families, we assists by helping children get into the car, so very functional practical things, the things that really get in the way of people being able to live their life and live their truth in the way that they want.

Patient Experience & Health Care

Our experience at Planetree, we see that every patient struggles with the healthcare system, from the most affluent, to the least empowered. Obviously it gets harder, the lesser education, the lower wealth. We talk all the time about consumerism in healthcare and quite honestly it's one of my biggest frustrations because I think consumerism is an entitled approach for the 1%. I know many people who consumerism for them is wherever the bus stops or wherever the subway stops.  They're going to go where the insurance is covered, so we talked about these choices that patients have, but in truth our healthcare system doesn't provide people as many choices.

In fact when I think about what my work with Kisses from Katie Inc., I'll never forget watching them do open-heart surgery on my daughter in her room because I couldn't stabilize her to bring her downstairs and when the medical team came out, as they were talking to us, the girl in the next room coded. I ran in there and a mother came out she was crying and my wife and I went over to console her and I looked at her and said I think your daughter has the same thing my daughter has because everybody in ICU knows each other's business.

I said does your daughter have HLHS too and she said no my daughter has hypoplastic left heart syndrome HLHS? Her daughter was 6 to 9 months old and this poor mother didn't know that hypoplastic left heart syndrome was HLHS which means she could never read anything of the material. I mean she never understood anything the doctors were saying because they don't call it hypoplastic left heart syndrome, they call it HLHS. I looked and I politely said I think it's the same thing.

My heart went out to that mother that night because she was about 16 or 17 year old single mom. The night before, I heard her dad yelling at her through the wall, “if you hadn't put yourself in a situation none of this would have happened”. So, what chance does this mother, does this child have for success. Unfortunately, we don't have a system in America that help families navigate and traverse that define success. I think we spent too much time on sickness and medicine and not enough on understanding that this is just a part of people's life journey.

My goal for health care is a equality, quality and respect, it's that simple. I want a equality that everybody gets access to appropriate care. I want to make sure that the care they get is top quality care. I want to make sure that they're dignified and respected through that process.


Revisiting the Ethos of Health Care | BJ Miller, MD

We have to remind ourselves that healthcare exists on behalf of humanity, on behalf of quality of life for everybody, that is its core genius and joy. For those of us working in it becomes morally distressing to be separate from that mission.


About BJ Miller, MD

Informed by his own experiences as a patient, Dr. BJ Miller powerfully advocates for the roles of our senses, community and presence in designing a better ending. His interests are in working across disciplines to affect broad-based culture change, cultivating a civic model for aging and dying and furthering the message that suffering and dying are fundamental and intrinsic aspects of life.  

He invites us to think about and discuss the end of our lives through the lens of a mindful, human-centered model of care, one that embraces dying not as a medical event but rather as a universally shared life experience. Dr. Miller is a longtime hospice & palliative care physician and educator. He’s been on faculty at his alma mater, UCSF, since 2007 where he’s worked in all settings of care: hospital, clinic, residential facility, and home. He now sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center.

Dr. Miller’s Story

I'm a palliative care physician from San Francisco. My clinical work is at the University of California San Francisco, where I practice and teach. But most of my work these days is being out in the world on the speaking circuit trying to sort of beat the drum around helping everyone deal with illness and trying to prepare for end-of-life issues. That's the bulk of my work and then the third piece right now is working on a book call A Beginner's Guide To The End. It will be out next July.

I was injured in college and that made me a patient for an extended period, for months and I came close to death myself. What really turned me on to issues around health care and caregiving in general was becoming disabled myself. That turned me on to two things, the power of our mortality and the finiteness of our time on this earth. Also, it turned me on to the healthcare system both its splendors and its ills. So that kind of prompted me to pursue this line of work, those two things together.

Americans With Disability Act: Built & Lived Environments

I think especially as a disabled person, the biggest thing I became  aware of is how the built environment is not really made for you. This was 1990---‘91 when I was injured. That's right at the time of the passage of the Americans with Disabilities Act. It was just becoming law that we had to guarantee access for people using wheelchairs etc. That’s not that long ago. If you look around you'll see a world that really kind of carves out-- it's built for people who are able-bodied, but those of us who have disabilities, it becomes much more challenging. It’s just becoming aware and my eyes being turned on to how we create a world that accidentally or otherwise leaves a lot of people out. That has been a driving force for me.

Complexities of the Human Experience

I think life is hard. I think for any human being life is hard, it's just we are born with these imaginations that allow us to imagine a world better than the one we've got, and so a lot of us always found ourselves either disappointed in life or disappointed in our response to life. I guess one thing to get across is disabled or not I think life is just difficult and I think we'd all be better off if we just cop to that, if we just gave ourselves that credit and gave each other a sort of a benefit of the doubt that no matter how big the smile on our face. No matter how able-bodied or well we look, that we may be having all sorts of struggles internally and that suffering is a universal experience you don't have to be an amputee to have suffered etc.

Societal Impact on the Human Experience & Healthcare

I think part of the social queue here is for all of us to wake up and see the other inside of ourselves, and see the relationship between us and others. If we could all do that, I think we would be living in a much kinder place. I think we'd be living in a much kinder world, a world without shame. I think one of the hardest things I witness in myself and others, particularly my patients is not only do we have to deal with illness or disability and the pains that go with that, but we have to deal with the shame that goes on top of that. That shame comes from cues that people send us, that of charity or pity or otherzing us.

If you spend a few moments in these shoes, you start realizing that not only is that unfair to receive that kind of vibe, that shame from people, but it also rises a sort of indignant in each of us, on myself. Because it's not like any of us has just got it all down and we're all clear, everything's good and everything's hunky-dory, none of us if we're really honest that state doesn't exist. So, it's not like the world is easy if you're able-bodied and horribly hard if you're disabled, it's just hard no matter what.

These are variations on themes, I don't care if you have four limbs or six limbs I don't care, it's just difficult. It's a really important cue and I do think it starts with of us seeing ourselves as others, seeing the parts of ourselves that are alienated from the world etc. How we accidentally divide ourselves from each other, how we accidentally alienate each other. To me it feels like the evolution of humankind, for us to see this unity among ourselves and so that there really no need for even the word other.

The Evolution of Health Care

Health care needs to radically shift, we keep putting band-aids on the system but I think the system is flawed at its core. Basically, the Department of Health and Human Services should back up and rewrite a mission statement. Being apart of the healthcare industry myself, I'm not even sure what this is all for. We've become self-serving, we invent gizmos that may or may not help people, but we just find a way to pay for them and develop them. We're just loaded up with all sorts of gear and gizmos that end up becoming other forces to get in the way of us being humans dealing with life.  We have to be reminded that healthcare with all its gizmos and its wizardry, I mean there's nothing wrong with its wizardry, it's just misplaced. We have to remind ourselves that healthcare exists on behalf of humanity, on behalf of quality of life for everybody, but that is its core genius and joy. For those of us working in it becomes morally distressing to be separate from that mission. That's sort of an overarching thing.

We have to revisit the ethos of health care not just the machinery of it, that whole ethos of care. Beyond that I think we have the sort of cultural issue, where as you point there's this vertical orientation doctor up here, patient down here, or doctor up here nurse, social worker, chaplain, there's this pecking order, that's just insane and it doesn't really work. That's where we end up with these conjuring craggily old doctors all burned out because too much is expected of them. Those working underneath them were burned out because they're treated like hell. With all of that I think the source of that moral distress that I see is principally because somehow in the culture of healthcare, we are not invited to own our own otherness, our own disability.

Back to this sort of central shift that I think you and I long for in society. Every doctor I've ever met has been sick, every doctor I've ever met is going to die, every doctor I've ever met has lost someone they love but those experiences aren't welcome in their work. We need to open that pathway where physicians and clinicians get to bring their own experiences as human beings to the mix. Not the current status as you basically are taught to ignore those things if I want to be a good doctor I'm supposed to stay up all night for nights on end I'm supposed to not have a personal life etc. That does not work, that does not work at all.That turns us into mindless machines and it makes patients feel awful for needing them. I guess I keep pointing back to however the machine of healthcare needs to change, I think it will flow nicely if we recraft the ethos and the mission of the work in the first place.

I guess that's my last wish Kistein, the work is inherently so gorgeous. I mean you have all these people going through so much trouble to learn so much on behalf of helping each other, so the potential for health care or the root of health care is one of the most gorgeous things. It's right next to sort of spiritual care,  pastoral care or something godly something beautiful, humans helping humans. At its root it has the potential to be the envy of any industry in the world but we are so far from that potential. My final word is, let's remember this potential and work towards that.