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.


Patient Perspective of Care | Kimberly Fisher MD

The medical system tends to define medical errors, adverse events and preventable adverse events in a very narrow way; To look at ways in which care was delivered that physically harm the patients. On the other hand, when you talk to patients and you take the patient's perspective, they really define a much broader set of breakdowns than what the medical system considers.


Kimberly Fisher, MD  A Physician & Assistant Professor of Medicine at University of Massachusetts Medical School.

About Dr. Fisher

My specialty is pulmonary, so lungs and critical care medicine which is taking care of patients in the intensive care unit. You don't have to work very long in the intensive care unit to recognize what a difficult environment it is for patients and their families, not just because the patients are critically ill and really sick but also because of the way the care is delivered and the patient and their families experience of that care adds to the burden of the illness. Seeing that first-hand led me to want to do research to better understand and try to improve that experience.

Research: Patient Perspective of Care

A lot of the focus of my research has been on the patient perspective of care and so that's really wanting to know how patients experience care through their eyes and specifically wanting to know more about their experience of breakdowns and care. We consider a patient perceived breakdown in care to be anything that has gone wrong from the perspective of the patient. That's not just that they were sick but something that's gone wrong in the delivery of care.

When you talk to patients or their family members about their experience of care and whether they've experienced any breakdown in care, a distressingly large number and percentage of patients and their families have experienced what they would describe as a breakdown in care and those are types of problems that can span patient experience. Problems with communication or access to providers, not being able to get the information that they want, to more medical type breakdowns that may include a medical error or an adverse event or a preventable adverse event.

Our focus is really on the patient's perspective of these, which tends to be really different than the medical systems perspective. The medical system tends to define medical errors, adverse events and preventable adverse events in a very narrow way; To look at ways in which care was delivered that physically harm the patients. On the other hand, when you talk to patients and you take the patient's perspective, they really define a much broader set of breakdowns than what the medical system considers. Even though many of these don't result in physical harm, some of them do but many of them don't.

They often result in emotional distress, disruption of either the patient or their loved ones life because they've had to go to extra visits in order to try to get information. It can result in financial burden for the patient or their families above and beyond the expected cost of care and really importantly it can result in a disruption of the relationship with the healthcare provider. In other words patients and their family members often lose trust in providers and the healthcare system as a result of experiencing these breakdowns in care and that may lead them to avoid seeking care at times when they should, because they're concerned about how they'll be treated.

Qualitative Research

I think that it's important to both capture the story or the narrative and a lot of the research that I do is what's called qualitative research, which means that we're interviewing patients or their family members and then we're finding ways to take their story and summarize it. So, we'll look across a number of interviews and say what are the common themes and we might want to summarize it so that we could distil 30, 10 page interviews down to one, four-page research manuscript.

 We'll want to summarize what are the common themes that we hear over and over again so that we can quickly summarize what those patients said to somebody else, but I find that it also loses some of its impact if you try to just turn it into a summary; a table with a few lines and some percentages. Picking out some representative quotes that really capture the patient's experience and the patient's story can make those tables much more powerful. It really makes people understand and appreciate the patient story.

Research Findings

I think learning about how patients view providers and the medical system really surprised me that they had as many negative feelings about medical providers and providers who didn't spend a lot of time with them. I was also surprised at how discerning they were and how quickly once they discerned that something wasn't going right, they would lose trust in a provider. Recognizing how fragile the trust between a provider and a patient is was surprising to me. Also, how essential it is that the health care system really can't function without it. It's sort of an underpinning of everything that we do, from having the patient even come to you as sort of an act of trust.

One other interesting finding  and this isn't surprising when you think about it, although it surprised me at the time, was how much pressure surrogate decision-makers feel. These are patient’s family or friends who are making decisions on behalf of a patient who is unable to make decisions themselves because of their illness. I had not previously appreciated the pressure that, that individual feels by being put in the position of having to make a potentially life or death decision on behalf of someone else. I think it's sort of obvious, but it's just not something that I had stopped to think about, so recognizing how seriously surrogate decision-makers take their role in making a decision for somebody else.

Closely related to that is our finding that many patients don't speak up about the breakdowns they experience, but one thing that we found was that if the patient has a family member or friend present at the time that you ask them if they've experienced a breakdown, the patient or the family member will be much more likely to speak up than if you talk to the patient alone. Putting those two pieces together both the responsibility that the surrogate decision-makers feel and the fact that they're much more likely to speak up on a patient's behalf really made me recognize the importance of engaging the patient's family and friends as advocates in their care.

Ideal Research Outcome/Impact

Ideally, it will help providers to recognize the patient experience, so that an individual provider who recognizes that could bring that recognition and awareness to each and every one of their encounters with patients. Perhaps encounter patients with a fuller understanding of what they go through and that may alter those interactions and those encounters for the better. Obviously the patients are the most important part of it, but I do think that the providers can't act to their fullest potential in a system that is difficult to work in.

Summary: Patient Experience & Breakdown of Care

In summary my research has really focused on the patient experience of care and specifically breakdowns in care, we really want other providers to understand this experience of patients. One thing that we didn't talk about was some of our research is focused on the role of apology. For example, patients who do experience a break down and speak up about it, apologizing to them can be a very effective way of defusing some of their anger, restoring trust and restoring the relationship.

It's not necessarily just as simple as saying I'm sorry. An apology has certain elements that really can make it more or less effective depending on whether all of those elements are included. But, we offer that as a simple way for providers who are equally frustrated by the healthcare system as patients. Also, a provider who maybe can't change the system, can still really go a long way towards addressing a patient's experience of a breakdown by rendering them a full apology that really expresses empathy for what they've been through, i.e  regret, caring and that they've learned something from the patient's experience. These studies have been published in various research journals including the patient education and counselling, the Journal of Hospital Medicine, BMJ Quality and Safety.


Fostering the Patient Voice in Medicine | Sarah Kucharski

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media.


Sarah E. Kucharski is a patient advocate, speaker, writer, patient, communications and health care consultant

Sarah’s Story

I got  involved in patient advocacy because I am a rare disease patient and as a rare disease patient it is extremely important to be able to be actively engaged in care to take a certain responsibility for directing your care, because you’re yourself 24/7, 365 and that's a lot more time than the doctors will ever really get to spend with you. I was diagnosed with rare disease when I was 31 and it actually came about because I had done a lot of investigation into my own care. My background is as a journalist and so I'd read all the information that I could get my hands on, done the research, read the medical journals and actually written an email to a doctor at the Cleveland Clinic and said, I know that sounds kind of crazy, but I think that I have this rare disease. She wrote back and said, I think you're right.

My medical history had been really complicated, for years as a teen preteen, I'd actually presented with gastrointestinal trouble and nobody ever thought GI problems, vascular cause. It took a very long time for us to even get to the point that anyone started looking down that path. I went through having triple bypass surgery that ultimately failed. I lost my left kidney. I had a stroke, four brain aneurysms, three of which were coiled and a gastric rupture. After having that in a period of about five to six years, that's when I said he didn't. Nobody has just this bad luck, like there's got to be something more here. There's got to be something overarching and that's when I really got serious about doing my research and reach the diagnosis.

Isolation & Rare Disease

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media. That without the Internet, without twitter and Facebook, or even registries and individual hospital systems, their forum board, etc.,, it would be so incredibly hard to find a patient community. We can maybe be a little less particular in that maybe a person doesn't have to share exactly our same diagnosis, but they are a rare disease patient too. So they understand some of the struggles of achieving diagnosis, of routine care, of having anybody else who says, you know, yes, me too, I know what that's like.

Health & Patient Empowerment

As far as my health, knock on wood, everything's actually pretty good right now. Things have been quiet, from just a pure health standpoint, I'm doing great. Thinking about the patient experience and its role in health care for rare disease patients, there's a saying of when you hear hoofbeats look for horses, but we need providers who are willing to entertain the notion that sometimes hoofbeats actually are zebras.

We need people who are willing to think outside the box and be curious. Curiosity, I think is one of the most valuable components of any person is what pursues you to find answers, to explore things, to get new knowledge about anything and so I would encourage that risk taking, that curiosity and if we can use that in a way that advances care, that is not reckless. I think perhaps sometimes people think of curiosity and in rare disease diagnosis as trying to be house MD and it's not necessarily about that. It's about really just asking the questions to explore the possibilities.

Rare Disease & Stigma

Having a rare disease inherently. I think people they hear that and they pause for a moment of it may very well be based in fear of what is this thing? Can it impact me? Is it transferable? Anything like that in rare diseases are really so much more common than people realize. The last statistics that I read about rare diseases was that combined, they affect more than like aids and cancer combined because there are 7,000 known rare diseases. It just means that we're a very fragmented population, but chances are, you actually probably know someone with a rare disease and there are diseases that you may have heard of that get a little bit more name recognition that it's not necessarily as rare as you may think, in a way. It's not something to be afraid of because actually research into rare diseases has unlocked information about many more common diseases that when you look at research studies and research arms that pursuing the mechanisms of these rare diseases, we can find out so much more about things that are more comments such as alzheimer's or diabetes.

Outlook on the Healthcare Environment

My overall outlook on the healthcare environment has changed over the past six years or so. In a way I feel like I used to be more hopeful because I was also more naive. Seeing how long change takes is maddening and depressing in a way. We're still trying so hard to push some of the same needles that we were trying to push years ago. I'm not someone who's been at this for 20, 30 years and I'm frustrated. There have been things that have happened politically that have pushed us backwards and I worry that for people like me, we may lose some of the protections that we’ve gained. I try very hard to maintain a sense of optimism and actually one of the guys here at Planetree, his name is Alan Manning and he's actually, I think VP of Planetree. He gave a wonderful lesson on hope as a speaker here a few years ago that he said; hope can change, hope isn't a stagnant thing. I had always worried that the people who felt like they hoped for change weren't maybe doing enough to impact it, but we can hope for different things in that whole change along the pathway that it grows and it becomes something that expands based on what we've learned. That's the first definition of hope that I've ever really liked. It makes me feel like it does respond to the changes around us.

Advice to All

I want to encourage people to stay at it, to keep trying to make a difference, to maybe know when they get into it that the needle move slowly or at least know that they're not alone in feeling like the needle is moving so slowly. That may be a different problem that we have to solve. We talk about physician burnout, we talk about patient burnout. How can we address burnout from trying to make things better, from trying to find solutions from getting ourselves to a point that we're not going to give up.

Planetree’s Impact

The Planetree organization and this conference is something that I learned about I think three, maybe four years ago and I was utterly shocked that I had not heard about them sooner because this was a group that I could say was actually doing everything right. That how they're approaching care, how they're focusing on patient centered care, but from a very provider focused angle is really interesting. It's really encouraging and it's something that I as a patient support because we often talk about patient experience as being something that’s so patient focused without talking about the people who are actually supposed to provide the care, and caring for those people. Making their environment, their jobs, their reward system, something that is conducive to a healthy care environment, that's only going to benefit all of us. I hope that more people get involved with Planetree. I hope that more systems see opportunities for patient engagement that aren't solely patient focused, but that we have opportunities to contribute to measures that will improve provider staff, employee care, so that they can do a great job of caring for us.


Person Centered Care at Planetree Inc, Susan B. Frampton, PhD

“One of the things that all people have the ability to do is to listen, to be a compassionate listener and to approach other human beings with that openness to whatever their experience is” S Frampton, PhD.


Susan Frampton, PhD is the president of Planetree International.

Planetree is both a philosophy of care, of patient centered care, of care that engages patients and families as a part of their care team. Planetree is also an organization that has advocated for the rights for patients and families to be more actively engaged in their own care for 40 years.

Technology & Humanism in Medicine

In terms of the future of patient centered care and Planetree’s role in that, I think that it will really be a challenge for us to look at the intersection of technology and the human touch and to not lose that human side of the care equation in this rush towards implementing more and more sophisticated technology.

There's some wonderful benefits that we have in store in terms of communications technology, in terms of artificial intelligence, but always we have to remember that at the center of the equation is a vulnerable human beings with human needs and that we have to make sure that we find a way to bridge technology and those human needs.

Healthcare Professionals Role in Person Centered Care

I think that the role of healthcare workers, healthcare professionals, advocates, in person centered care in the future as well as currently is absolutely essential. So, when we talk about patient and family engagement, we also are addressing staff engagement because the people that deliver that care, they're also at the center of the equation.

That's why we've really moved from talking about patient centered care to person centered care because they're also a part of the people that we have to make sure are supported, are engaged and involved so that they can give their very best to the patients. But in order to do that, we have to make sure that they're getting the support and the training that they need to do the very best that they can.

Empathy & Care Delivery

One of the things that all people have the ability to do is to listen and to be a compassionate listener. To approach other human beings with that openness to whatever their experience is. To understand that to try to meet other people where they're at and not to make judgments about things. To really try to be a little broader in the way that we approach other people so that again, we're trying to put ourselves in their shoes to understand what their experience, what their reality is.

I mean, that can be so diverse. It is a challenge because all of us have our own biases, whether we acknowledge them or not. We come from our own set of experiences and our own background and our own, training or what have you. But I think when we come together, particularly in healthcare, we have to challenge ourselves to think more broadly, to be more open and to be more compassionate listeners to the human beings that we're trying to support.

Patient Empowerment Initatives

So #careboss in many ways encapsulates what the whole philosophy of person centered care is, which is each of us has an opportunity to take more control of our own healthcare, to be advocates for ourselves, for our families, for our communities, and Careboss is a way of kind of energizing people to understand, you don't have to be a victim. You don't have to be the person who sits passively, that we do have power.

We have expertise about our own lived experience, about our own bodies, our own needs, and so it's really a movement to try to energize people to kind of take that power back to be the boss of their own care. To the extent that they're able to, where they're comfortable to. And so we're hoping that people will use that hashtag (#careboss) to share their experiences. To maybe give us their thoughts and perspectives about what it means to be in a space of more accountability for your own life, your own self, and what role you want to have in your own healthcare.