AfterThoughts – PCPs are Human Too: When Doctors Get Cancer [Episode 4 Transcript]
Hosts and Guests
Toby Peach (Host)
Alice-May Purkiss (Host)
Dr. Philippa Kaye (Guest)
Note: The following transcript will refer to Dr. Philippa Kaye as a GP (General Practitioner), referring to her official title in the United Kingdom.
Toby: Every day, 34 people in their 20s and 30s are diagnosed with cancer.
Alice: On the 7th July 2015, I was one of the 34.
Toby: On 28th August 2008, I was one of the 34.
Alice: These are the stories of what happens afterward.
Toby: This is AfterThoughts
This series of AfterThoughts was created in partnership with Life Effects by Teva and supported by Trekstock.
GPs are Human Too: When Doctors Get Cancer
Toby: Hi, Alice-May Purkiss.
Alice: Hello, Toby, what's-your-middle-name Peach.
Toby: But May is not your-
Alice: No, that's true. What is your middle name?
Toby: You have to guess.
Toby: Correct. It is Toby Eugene Peach. That's 100% correct. I can't believe you got that in one.
Toby: Imagine. How are you doing?
Alice: Yeah, I'm good, thanks. How are you?
Toby: I'm fine. I feel fresh-faced because the lockdown has-
Alice: I can see your face.
Toby: - slightly lifted, and I've got myself shaved on the sides. I'm feeling alive. Shave on the sides, feeling alive.
Alice: I can see your chiseled features again.
Toby: Well, that's it. They were covered by my locks. But, today, Alice-May Purkiss...
Alice: Toby Eugene Peach.
Toby: Thank you. Just a note, everybody. My name is not Eugene, but that's fine. We've got a wonderful storyteller on with us today.
Alice: Yeah, absolutely. What a brilliant, brilliant storyteller for us to be joined by. And it's really, really important to note that this person took time out of their busy schedule today. They're a doctor, as well as being a cancer patient, and they took time out of their schedule to join us on AfterThoughts here. And we really, really appreciate it.
Alice [Cont.]: I've kinda alluded to it already, but we were joined today by the brilliant Dr. Philippa Kaye, the author of the book Doctors Get Cancer Too.
Toby: And Alice, you're going to give us a jumpstart or a starter for of 10, because there's a section of the book that you sent to me in a WhatsApp recently, and we thought this has got to be the way that we kick-off before we dive into... We said dive in again. There we go. Before we head into the stories.
Alice: Yeah, absolutely. I was reading Doctors Get Cancer Too. The reason this jumped out at me is it just seemed to really align with what we do here at AfterThoughts. I'm just going to put on my best voice and read this little section. Philippa writes: "Many of the cancer diaries out there, wonderful as they are, are published after death. Even as you read them, you know what their outcome will be."
Alice [Cont.]: I'm going to do that again.
Alice [Cont.]: "Many of the cancer diaries out there, wonderful as they are, are published after death. Even as you read them, you know what the outcome will be.
Alice [Cont.]: "They have huge value, however heart-breaking they are, and the afterwords are written by a loved one maybe. But this book is not a cancer diary about death or preparing for death. This is a cancer diary about living, about survival, because that is what most of us who are diagnosed with cancer will do. We survive."
Alice [Cont.]: And I just thought when I was reading that, that's so much about what we are talking about here on AfterThoughts.
Alice [Cont.]: And I wanted to read that section because it really sticks out to me as to why we do what we do, you know? One in two people will be diagnosed with cancer in their lifetimes. We know that 34 young adults are diagnosed every day.
Alice [Cont.]: And treatments are getting better. Treatments are getting kinder. More people are living well with or after cancer. And yeah, more people are surviving, and we need to be talking about what happens after that cancer diagnosis. So, shall we hand it over to Philippa? No, shall we go into our chat with Philippa?
Toby: Yes. Let's go...
Toby [Cont.]: Hi, Alice.
Alice: Hi, Toby. How are you?
Toby: I'm fine, thank you. How are you today?
Alice: Yeah, I'm very well, thanks. You are looking very slick with your new haircut.
Toby: It's a fresh haircut, thank you very much. I'm very pleased with it.
Alice: Yeah. And it's especially for Philippa, our guest today, Dr. Philippa Kaye. We're very pleased to have you here. How are you?
Philippa: I'm good. Thanks for having me. Thanks for a special haircut. I expect nothing less.
Alice: I wish I could say that I'd done the same, but-
Philippa: Yeah, me too.
Alice: I haven't, I'm afraid.
Toby: Philippa, we are going to dive into our Quickfire Questions. Do you know what? I'm going to say it out loud. I'm going to say that we've already done this section once, and I want everybody to know that we fluffed our lines and we didn't press record.
Alice: I also just want to say that, how many episodes have we recorded, Toby? This will be episode 20, and that's the first time we've done it.
Toby: Yeah. So that's fine. But we've given Philippa a little bit of a heads-up on some of our quickfire questions. So Alice, are you ready to dive in?
Alice: Yes. Philippa, what pronouns do you use?
Toby: And who do people say that you look like, Philippa?
Philippa: I said this was a really good question. My eldest son looks like me, but that doesn't answer. But actually, I'm more "sound like." My two sisters and probably my brother as well. We've all got the same laugh. If you hear one of us cackling, it's one of us is somewhere. But looks is probably my mum. But, definitely, it's more "sounding like" than "looking like.""
Alice: I love that. What film would you say defines your childhood?
Philippa: White Christmas is what comes to mind first. There's a song in it about two sisters, and my maternal grandmother and great aunt would sing that together. Or the other one is every Christmas without fail begging my dad to record Annie because who doesn't love Annie?
Toby: Who is your hero, Philippa?
Philippa: So bloody hard. Sorry. We didn't get to this one before, so now it is quickfire. I guess I'm supposed to say someone medical or something, but the truth is that it would be the female role models in my life.
Philippa [Cont.]: And that would start with my paternal grandmother, who in the 50s and 60s worked full time, managed to run her own business and bring up three kids and have a happy marriage. And all the women in my life, including, actually, the headteacher from my secondary school, who managed to embody all the things that I wanted, which were not career or home.
Philippa [Cont.]: It was how to do that impossible juggling task of both. And so my hero is anybody who can manage it. Because it's hard.
Alice: Do you have any nicknames, and if yes, which one is your favorite?
Philippa: Which one am I willing to say, more to the point. I'll tell you what I don't like. I don't like Pippa. I don't like Pip. I'm not any of those. Most of my friends call me Phil.
Toby: If you could listen to only one song for the rest of your life, Philippa, what song would you listen to?
Philippa: That's even harder than Desert Island Discs. One song. It would either be Man in the Mirror or it would be a song called Missing the War by Ben Folds Five, who was an American band, and Ben Folds is an amazing pianist. Can I have that whole album? I'll have that whole album from Ben Folds Five if that's allowed.
Toby: That's allowed.
Philippa: That's a really hard question.
Alice: Permission granted. Roller coasters. Love them or hate them?
Philippa: Adore them. All of them. Every time, dragging my kids with me, dragging my friends with me. Husband hates it. Husband holds the handbag. The rest of us queue up on all the roller coasters we can find.
Toby: Philippa, what's your favorite way to eat a potato?
Toby: Yeah! Oh, that's a great answer.
Alice: That is such a good answer.
Philippa: But a potato, anyway. I'll take the potato any way you give it to me, but yeah, crisps.
Alice: Nice. And last but not least, can you give us a one-liner on your diagnosis, please?
Philippa: I was diagnosed with Stage II bowel cancer at the age of 39.
Toby: The first section in AfterThoughts is Beyond the Diagnosis. We like to focus here on those stories that might happen beyond that initial moment. So, Philippa, it's over to you for Beyond the Diagnosis.
Philippa: I think that the moment of diagnosis is not the only time that cancer punches you in the face. Because that's what it does. You get punched in the face, and then you get up, and then you get punched in the face again. And sometimes, that's what it feels like.
Philippa [Cont.]: And sometimes it actually feels like that you go to the doctor and you say, "Okay, I'm standing here. Punch me in the face." And my diagnosis took everybody by surprise. Took my medical team by surprise. There was none of that preparation that you might have where you're thinking about worst-case scenarios. I have now had a lot of experience of those afterward, but I didn't have before.
Philippa [Cont.]: Doctors are taught how to deliver bad news - and how to do it in a way that allows somebody to come to their own understanding of what's happening. As those processes were happening to me, I observed them very sort of separate from myself. Very much in doctor mode. All doctors do have a wall. We have an emotional barrier that protects our core, our soul, who we really are. And that allows us to keep going in moments of... not just huge stress, but huge tragedy.
Philippa [Cont.]: How do you keep going and resuscitating a child while their parents are screaming in pain? How do you manage these incredibly stressful situations that you are exposed to at a really young age? I was 24 when I was suddenly dealing with death and tragedy every single day. And so you build a little wall so that you can continue to function and that you continue to be a person. And that doesn't mean that we're not human. There's often this idea that doctors are harsh. And yet every doctor I've ever met in my life has cried in the toilet after a ward round. All of us have.
Philippa [Cont.]: But that wall exists. And mine went straight up. And I went straight into doctor mode, which is what's next? What's coming now? Tell me what to do. What's the plan? Because as long as there was a plan, I was in "forward motion," and that was okay. And the first chink in that wall was on the day of my diagnosis, hours later. Half-naked on the changing room floor in the scanning department, ringing my best friend, who is a child and adolescent psychotherapist.
Philippa [Cont.]: And I'd already spoken to my husband. And essentially telling her to put her own wall up and saying to her, "I need you to react to me professionally. This is what I need right now. Tell me how we tell our kids."
Philippa [Cont.]: And I sat on that floor and listened, put the phone down to her, texted her husband, and said, "Now go and pick her up," because I now know that she's on the floor and I can't do it. And discussed it with my husband and came home to tell my kids.
Philippa [Cont.]: There is this idea that, of course, that's going to be a difficult conversation, but children are incredible and bound by the developmental stage and age that they are. And at the time, mine were four, seven, and 11. And the four-year-old was completely appropriate. "Who's going to take me to school, Mummy, if you're in the hospital?"
Philippa [Cont.]The 11-year-old was much more thoughtful and had a lot more questions. And the seven-year-old reacted instinctively, and he came over to give me a hug. And then he recoiled and went, "Oh, you can't catch it. I don't want it." By which point, we were all laughing.
Philippa [Cont.]: And then he said, "Mummy, I think I'd quite like you to have chemotherapy. It'd be interesting to see what a bald Mummy looks like."
Philippa [Cont.]: And then you're off on the cancer roller coaster, and you're just preparing, and you're getting ready for surgery. And for me, that's very practical. I'm filling the freezer, and I'm doing all these kinds of things. And at the beginning, I had said to my family, "I need a minute. And I need not everybody to know for just a minute." But I told my kids straight away.
Philippa [Cont.]: And, by my family, I mean my parents, all my siblings, my husband's parents, all of his siblings. So it is already a lot of people. And yet, once the kids were in bed, I thought, "Oh, I better tell the parents of their best friends because what happens if they go to school tomorrow and they say something?"
Philippa [Cont.]: And now I need to tell the kids' teachers because they might say something. And suddenly, that group of people was much bigger than I already had even thought that it would be.
Philippa [Cont.]: And then, within a few days, the rumor mill had started. I'm Jewish, and I live in London but in a part which has quite a big Jewish community. Everybody knows everybody. And there were definitely lots of rumors around about me, so I thought I'd better put it out there. So I sent a message to the three parents' groups of my kids' classes on WhatsApp. Knowing that, once I did that, it was all over North West London.
Philippa [Cont.]: And what really struck me were a few things. First is, I found other people's reactions very difficult to deal with because I was just about hanging on to mine, and I was dealing with my kids.
Philippa [Cont.]: And I couldn't deal even with the kindness that came through because it felt almost like too much emotion. And that if I let it all in, I was going to be back on the floor, and I couldn't afford to be back on the floor.
Philippa [Cont.]: But the Jewish community is about food in lots of different ways. It's about lots of things, but food is most definitely there. And within about five minutes of me sending this message, there were four or five meal rotas set up. And I was like, "I'm not going to be able to eat." And they were appalled. Like that was the worst thing that was going to happen was that I was going to have to have bowel rest and not be able to eat.
Philippa [Cont.]: And those were all things that happened in the lead-up to my surgery, but there were lots of moments afterward where you get punched in the face again. That might be when you are told you need chemo, or it might be when you're told that your cancer hasn't gone. But for me, the biggest one was going in to have major, major surgery - about as big as you can get in the middle of the pandemic - knowing that I was going to be in hospital on my own for two weeks.
Philippa [Cont.]: That was a 10-day stay in ICU and a 15-day stay in hospital. I had thought that I had done hard things already, and this was hard on a whole other level.
Alice: Now, on AfterThoughts, we're going to talk about some of the invisible impacts of a cancer diagnosis. There's loads of stuff that you can see around a cancer diagnosis, the kind of clichés that we lean on, the baldness, the steroid moon face, all of those things.
Alice [Cont.]: But there are lots of invisible impacts that come with a cancer diagnosis. So, Philippa, we'd love to hear a story from you that explains some of the invisible impacts of your cancer diagnosis.
Philippa: I want to talk about the impact of bowel surgery. When you have a section of your large intestine removed, we'd think about what does your large intestine does. And one of the things it does is absorbs water and salts out of the bowel, out of your poo. And then, as you get towards your bottom, your rectum essentially is your storage facility. Your rectum fills, and when it's full, you need to go and do a poo. And your anus is the sphincter that opens to let your poo out.
Philippa [Cont.]: Now, if they cut that away, you are going to potentially be left with symptoms. I had half of my rectum removed. Different people have different symptoms depending on where and how much of their bowel was removed. Some people may be left with a stoma, which is where the intestine is brought out through the surface of the skin. Those can be temporary or permanent. You collect either stool if it's a colostomy. Or more liquid if it's higher up, if it's an ileostomy.
Philippa [Cont.]: I didn't have one of those. But after you've had bowel surgery, your bowel goes into a strop and a sulk. It does not like being touched, the bowel. And it just refuses to do anything at all. It's completely quiet. And that's why you have to have bowel rest and not eat.
Philippa [Cont.]: And then when it restarts, it can go completely haywire. You can have periods of going 15 times a day, a small amount of very liquid poo. You then might not go for two weeks. Both of those are unpleasant. And it can take three to six months for your bowel to settle down. And you might be left with urgency. If my storage unit is only half as big as it was before, or in other people maybe they don't have one anymore, it's full, I need to go, I need to go now. Can't wait.
Philippa [Cont.]: You might have what feels like. It's called stool fragmentation, but it's that you go, and then 20 minutes later, you need to go again. That's because you didn't have your storage capacity. You filled it, you went, and then it fills again, and then you go, and you might need to fill again, and then you go.
Philippa [Cont.]: You might have a sensation. The "medical world" word is called tenesmus, where you feel like you need to go, but there's nothing in there. Your stools might be a different shape. You might struggle to eat. Really common after bowel surgery that you need to eat very little and very often that there are certain foods you can't eat.
Philippa [Cont.]: And initially after bowel surgery, you go onto this bowel rest, and then it's clear fluids, and then milky fluids, and then low fiber food, which seems really counterintuitive. You're like, "I've got bowel cancer. Fiber's really good for my gut. You're telling just to eat white toast." But you have to train your gut again to manage fiber.
Philippa [Cont.]: I am now... Where are we? Six and a bit months past my second major surgery. I had lots of procedures. But we're now at the point of "This is probably what I'm left with after this surgery." And I am left with urgency and stool fragmentation and bloating, and not being able to eat lots of food. And food is still very difficult.
Philippa [Cont.]: And then that has an impact on all the social aspects of eating. And as we begin to come out of lockdown, I have anxieties about all kinds of things that didn't occur to me the first time and maybe occur to me now because we've essentially been at home or I've been at work.
Philippa [Cont.]: And I know where the toilet is at work, but there are thoughts about what happens if I can't find a toilet? Where is the toilet? How do I go out for dinner with friends when I can only really eat about half a starter, but an hour later, I'm hungry? Or it's going to take me an hour to eat a main course?
Philippa [Cont.]: And actually, these are things that not only do we not talk about but actually, I think that lots of bowel cancer or bowel surgery patients are left quite unprepared for afterward. You might get a leaflet. But for me, the input of a dietician has been invaluable. Because otherwise, I simply would not have been meeting my nutritional needs. And I think that that is definitely a long-lasting impact that is not always seen.
Philippa [Cont.]: The first sign that your tummy is waking up is a fart. Farting is healthy. Essentially, when your bowel goes on strike, and it becomes paralyzed in some way, you are obstructed. It's called an ileus. Relieving that can be incredibly painful. My surgeon had warned me about this unbelievable pain that no painkiller would help. And I was terrified. When he said unbelievable pain, I then learned about that.
Philippa [Cont.]: And it was pain that came and went probably over about 48 hours. It would come as the bowel tried to contract and tried to move things along. I talk about this in the book, but for me, this was both one of my lowest points and yet one of the points that I guess taught me about who I really am.
Philippa [Cont.]: And that was that we use time as people and as doctors. We say to ourselves, "I've got a bad day, so I'm going to have a takeaway, or I'm going to watch Netflix." As GPs, we say, "I'm not sure what that is. Let's see if it goes away in a week. Come back and see me." We use time.
Philippa [Cont.]: And when things hurt, be that physically or emotionally, one of the things that always helped me was to try and shrink time. I don't have to survive five years; I don't have to survive a year. I have to survive today, and if I can't survive today, I'm going to survive the next hour, and if I can't survive the next hour, I'm going to survive five minutes.
Philippa [Cont.]: It's like my theory of HIIT training. I can do most things for 40 seconds. And then someone's going to let me breathe at the end of it. And in that pain, I wasn't even at a minute, and I wasn't even at counting to 10. And I was simply at every single breath.
Philippa [Cont.]: And I had to tell myself to take the next breath because moving my tummy to breathe hurt too much. And I had to tell myself that's okay, you can expand your ribs. Another breath. Another breath. And I would literally put in my head the faces of my children, and I would say, "That's what you breathe for. Breathe."
Philippa [Cont.]: And that was the pain of waiting for that obstruction to pass. And waiting for that ileus to resolve. And then I felt it. And I hope to God that I never experience pain like that in my life, but it also taught me that I can survive that. And on top of all the tough things that I did, I can survive that even if it is just one breath.
Toby: Next up on AfterThoughts, it's the Those Around Us section. For those of you who haven't joined us before, this is an opportunity for us to tell the stories of those people or animals that might go through the experience with us. Philippa, over to you for Those Around Us.
Philippa: Cancer comes for you in all the roles that you play. And we all have lots of roles that we play. My roles include "doctor," but it starts with "mother." And, of course, cancer impacted my whole house, and it impacted my husband. But the people, I guess, that I was always most concerned about were my kids. And the amount of guilt that I felt added to my maternal guilt burden.
Philippa [Cont.]: It took me a long time, actually, to understand that it wasn't my fault. But my husband and I have always had a policy of being honest with the children. That you can pitch things age-appropriately, but you can't lie. So that means when they said, "How did the baby get in your tummy?" or whatever else, I answered those questions. So I said, "There's a bad ball of cells called cancer growing in my tummy, and the doctors are going to get it out."
Philippa [Cont.]: What it means, though, is that sometimes they ask you questions that are really difficult to answer. But in answering them, you have to deal with your own thoughts, but it also helps them deal with theirs. So:
Philippa [Cont.]: "Are you scared, Mummy?" / "Yeah. I'm scared of being in pain." / "Are you going to die, Mummy?" / "I'm going to do everything I can to not." Not, "No."
Philippa [Cont.]: "Do you promise to be at wherever?" / "I'm going to do my best, and if not, someone else will come. Daddy will come. Grandma will come. Someone will come."
Philippa [Cont.]: But what that means is that it allows them to express their fears too. "Are you scared, Mummy?" / "No, I'm fine. Nothing to be scared of," means that they can't then say that they're frightened. So, "Are you scared, Mummy?"/ "Yes, I am. I'm scared of being in pain," means that they say, "I'm scared too."
Philippa [Cont.]: And you can't fix it because I couldn't fix my own fear. I still can't fix my own fear. But what I can do is sit with you in it, and we can be scared together. And your kids, my kids, anybody out there with kids or not with kids, we can do hard things, but they're easier to do when we don't feel alone.
Philippa [Cont.]: And then my kids' play got dark, shall we say. Very young children learn through play and role-play in particular. My youngest was four, and "mummies and daddies" at nursery, she didn't want to play that. She would play, "Let's play that our mummies are dead. Let's play that our mummies have gone away." Because that's her way of working through it.
Philippa [Cont.]: Now, the nursery were really good because they understood that. Other kids' mums didn't. Because it was hard. And yeah, it was hard for me to hear that's what she's playing, that that's what she wanted to play.
Philippa [Cont.]: And in children up until about seven, eight have what's called "magical thinking," which is where they think they can control things. And they believe in the tooth fairy, and they believe things like, "I was cross with Mummy, and I wanted her to go away because she made me clean my bedroom. Look what happened. She went." And having an understanding of that was definitely useful for me because I could pre-empt those conversations and say, "You didn't make this happen. I didn't make this happen. No one made this happen."
Philippa [Cont.]: And then my middle son would say things like, when I came home from hospital, he would say, "I think I'd be okay, Mummy, if you died because I was okay when you were away for a week or two weeks. Daddy managed. It wasn't as good, or it was different, but he managed, and Grandma came. And I think I'd be all right."
Philippa [Cont.]: He's not trying to hurt me. He's trying to reassure himself. He's trying to prepare himself for a reality that none of us want to happen. So you have to say, "Yes, darling. There are lots of people out there who love you. Yes, you'll be okay." But then he leaves the room, and that one got a big wail.
Philippa [Cont.]: And then, even when you think it's over, I didn't say to my kids after chemo, "It's over." I didn't because I didn't know that. And I'm very glad because they found something straightaway. And then it was always a case of we're waiting, we're still doing, we're still having treatment.
Philippa [Cont.]: And then, even when they said to me, "We've got it," after that last big surgery, I didn't promise my kids. I still haven't promised my kids. And when I went to have my first set of scans and scopes, which were clear, which were at the end of February this year, I said, "The cancer's not there now. Mummy's okay now." Because that's the promise that I can make. And what I have to learn now is how to plan for the future now I've been given that message. And to allow them, I guess, in some way to do that too.
Philippa [Cont.]: But when my book arrived at home - because when you're the author, you get copies in advance - my middle son said to me, "Can I read it?" And I said, "There's nothing in there that's a secret, but I think that you might want to wait until you're older because there are some bits that feel hard. Because there were times which were hard."
Philippa [Cont.]: And I said, "But if you want, you can look at the pictures in the middle. They're all pictures you've seen. There was Mummy when you've seen her in all of these stages. Go and read the dedication," I said.
Philippa [Cont.]: And he said, "Oh, not now." Because it's dedicated to my three kids. He said, "Not now." And we ate dinner, and I was reading to the next kid, to my youngest one, before bed. And I'd forgotten about it, and he hadn't. He'd gone, and he'd looked at the pictures, and he'd read the dedication. And then he started to read the end.
Philippa [Cont.]: And, at the end of the book, there is a letter that I wrote to my kids just in case. Just in case I didn't survive the surgery. And he had flicked through the book and got to that and read. And he came in in tears. And that was only a couple of months ago. And I thought, "Oh gosh. I hadn't prepared him or me for this."
Philippa [Cont.]: And he said, "Where's that letter? That's my letter." And I said, "No, darling, that's my letter. It was for me. Because I needed to write it." And I said, "And I put it in that book because I want people to understand what it's like to go through this, how you prepare for that."
Philippa [Cont.]: And I said, "But I also put it in that book because this whole book in some way is a love letter to you and your siblings. And the reason that I did everything was for me but for you. And this letter says how much I love you. And it can never say how much I love you, but that's what it plans to say." And I said, "But you get to read it with me sitting next to you. And how lucky that makes you."
Philippa [Cont.]: And he was crying, and he didn't know why. And I didn't even know why. And it was being overwhelmed and being relieved and being frightened and being loved. And our kids, just as we experience all of those things going through cancer, our kids experience them too. Just as you are changed, they are changed. And it doesn't mean that it's bad. It just means that it is.
Alice: Moving on, we're going to talk about lost conversations. There's so much stuff that we are talking about now in the cancer space, particularly in the young adult cancer community, but there are still areas we're afraid to talk about. So, Philippa, we'd love to hear a story that highlights a Lost Conversation.
Philippa: I was diagnosed on a Tuesday. It was a Tuesday. And I had surgery the following Wednesday week. Because I'm just thinking about what I did the rest of that week. I told my colleagues in the surgery that I wasn't going to be at work from the following Tuesday when I had to do a bowel prep. And my colleague went, "No, you're not coming in now." And I was completely taken aback.
Philippa [Cont.]: And I said, "No, I can." And she said, "No, you can't. Go sort out what you need to sort out at home." She was right because, at that time, I did not have the headspace. The day that I took my bowel prep, I had meetings with various media things that I'd made breakfast meetings so that I could come home and start my bowel prep. It was this really bizarre day because I sort of did that. Nobody knew and then did a bit of social media, and nobody knew and then came home and vomited my way through the bowel prep.
Philippa [Cont.]: So I told my colleagues, but I did not tell my patients. We don't really talk about how that impacts work and getting back to work. And how you might want to get back to work. And I would not give up work. They signed me off, however, and they signed me off for post-op, but I worked throughout my chemo. I worked slightly less to the end, but even postoperatively, I was still writing for the various magazine things that I do.
Philippa [Cont.]: I was still doing radio and TV because I would not give up that part of me. Because that was the only part of me that existed without cancer. It was the only part of me that existed for somebody else, and it got me out of my head. I mean, medicine is cerebral, so I was still in my head, but not in my head about me.
Philippa [Cont.]: And we don't talk about how cancer impacts everything. Diet, exercise, sex, fatigue, every relationship you have, including your relationship with yourself. And actually, until we do talk about all of those things, we can't truly help someone understand what they need to do to heal or help them heal. I remember the first patient that I told. Patients appreciate the human, but they also want the doctor. It's a really hard balance. We don't give all of ourselves. Because if we give all of ourselves, there's nothing left for us. So you might give snippets where they're useful.
Philippa [Cont.]: It was somebody who was relatively young and female and had different cancer to mine. And she was just saying how bloody hard it was and how she was fed up and how she didn't want to go to chemo and how she didn't feel strong and she didn't feel brave. And everyone was telling her how brave she was and how strong she was, and she didn't feel it.
Philippa [Cont.]: And I said to her that I had sat in her chair and that I didn't have the same kind of cancer but that I had cancer and that I knew how bloody hard it was. And that's how I knew how strong she was. And that she didn't have to feel it. And she could be angry and fed up and frightened and raging and whatever else. You can go to chemo kicking and screaming; you just go. And that was where she showed her strength. And it was as I said it to her that I began to realize it of myself.
Toby: When you go through cancer at a young age, it sets you apart from those others in your life who may never have experienced cancer. So the Not Your Average section highlights a story about those moments.
Philippa: I think that I learned an awful lot about myself. And I would say that therapy has helped that a lot. About understanding that whatever emotions you have, they're okay, even when they're conflicting. Even when you don't know what the answer is. I mean, I'm a scientist, I'm a medic. I like to know what the answer is. But there's a lot of unanswerables.
Philippa [Cont.]: But what I learned, and I truly don't think that I knew that before, is that I'm enough. And that I can do hard things. And being on my own in the pandemic in hospital is what taught me that I am enough. And I thought that I wasn't. I was terrified about going in on my own. I thought that without the arm, the physical arm of my husband or my parents, I wasn't going to be able to manage. That I can't.
Philippa [Cont.]: Glennon Doyle wrote a brilliant book called Untamed. In it, she writes about how she was worried about getting divorced because she was worried about the impact on her kids. And she says, but now she knows that her kids are fireproof because they walked through the fire.
Philippa [Cont.]: Well, I know that my kids are fireproof, and I know that I'm fireproof because I walked through the fire of cancer. And they walked through it too. And I think that knowing that you're fireproof, knowing that you are enough, is incredibly powerful.
Alice: And as ever, we finish AfterThoughts by looking at some of the lighter moments that come with a cancer diagnosis. Philippa, over to you. Make us laugh for Don't Laugh.
Philippa: Laughter is a very positive emotion, isn't it? I actually think anger is also a positive emotion. I think it feels powerful, and it feels very life-giving. And I wanted to laugh rather than cry. I cried plenty. I laughed until I cried. But, yes, and my medical humor is very dry and often very dark. It started off, and I remember thinking even at the time that other people would think that I was crazy. My mother would always take me shopping when I was pregnant and buy me some maternity clothes or baby two and three, buy me something.
Philippa [Cont.]: Anyway, she would buy me something when I was pregnant. We would do this sort of shopping. She was the person that came with me when we went to scout out the buggies, and then I would... I'm definitely sort of a gatherer type of shopper, so I would go. I would find out about 100 buggies with my mum, and then when we were down to three, my mum would go, and my husband would come and then [inaudible 00:41:06] three. Because he would never do 100.
Philippa [Cont.]: So my mum was always my shopping companion. And before I went in for surgery, I was like, "I need to go shopping." She was like, "What do you need to go shopping for?" I was like, "I need all those things." And some of those things are the things that I had when I was pregnant. I needed big pants to go over the scar, and I needed the elasticated waistbands and the really soft trousers. I needed bras without wires because when I was pregnant, I had feeding bras.
Philippa [Cont.]: I knew that I was going to be too sore. I was like, "I need to have a surgery bra," even though I'm not having breast surgery, especially when they fill you up with gas. And I need an eye mask and earplugs and soft things, a hairband to hold the hair off your face. Otherwise, you get all these fly bits. And everything annoys you when you're in pain, just all the soft things.
Philippa [Cont.]: So we went shopping. And when we stood in New Look or somewhere, and I said, "And I need loose T-shirts," and didn't know if I was going to have a stoma at the time. And I knew I was going to be bloated, and I knew that I needed the loose, baggy clothes.
Philippa [Cont.]: And all the T-shirts had slogans on them. And they all said things like, "Living my best life," or "This is me," or "Thank you... Next," or "Sorry I'm late. I didn't want to come." So I went around, and I held up, I went, "This isn't I'm living my best life. I want to scrawl on it 'with cancer,'" or, "Thank you. Scrawl on it 'cancer.' Next," or, "Sorry I'm late. I didn't want to come because I've got cancer."
Philippa [Cont.]: And so I went around picking up all of these T-shirts talking about this stuff. My mum and I laughed until we literally cried, tears running down our faces, and I just thought, "I wonder what other people are thinking?" As they reach for the size whatever behind me that I'm just laughing my head off because I've got cancer. That's what we did.
Philippa [Cont.]: I didn't know there was such as thing, but there definitely is such a thing as cancer gifts. You get gifts when you get married, or you move house, or you have a baby, and people send flowers, and they might send you gifts. But when you get cancer, people do the same thing because they really want to do something. And they're lovely, and I appreciated every bunch of flowers and everything that I got, but there's a gap in the market for cards. "Sorry You Got Cancer" cards.
Philippa [Cont.]: When I finished my chemo - maybe when I finished my treatment - my sister got me a card that said, "I am very pleased to hear you are significantly less cancer-y than you were previously." And also, my husband bought me a card one year for my birthday that said, "Congratulations on another year with hair." And he said, "I'm pretty sure this card isn't meant for you, but somehow it's really fitting." And that made me laugh until I cried.
Alice: Philippa, honestly, thank you so much for joining us on AfterThoughts. It has been a genuine pleasure to have you. And thank you for sharing your stories with us. I think our listeners will be so interested to hear your perspective as a patient and as a doctor as well.
Alice [Cont.]: I think it's... I'm going to say it. It's a pretty shitty perspective, pun intended, to have. But also, I think there are lots in your stories that people will really, really value and resonate with, so thank you so much for joining us and for sharing them with us.
Philippa: Thank you for having me. And feel free to cut this bit out if you want, but if anybody does want to read more, the book is called Doctors Get Cancer Too, by me, Dr. Philippa Kaye. It is available online but also in bookshops because bookshops have just opened in the UK after lockdown, so that's exciting too.
Toby: So, Alice, there was Philippa's podcast. That was her episode.
Toby: Let's start again. Incredible. It was great. Really enjoyed it. So amazing. She was so generous with her time.
Toby: So, Alice, there was Philippa's episode.
Alice: Yeah, absolutely. And what a great episode it was. How brilliant to hear stories from that incredibly unique vantage point. I mean, I cannot imagine what it's like to be a GP, a doctor with all of that medical knowledge, and then be on the flip side and be the patient. Just must be overwhelming at the best of times.
Toby: And it is the first time we have had a parent on AfterThoughts. So the insight into those moments of those young people, those children you are caring for, and what a diagnosis means. And I can't thank Philippa enough for the way that she shared those stories with us because she was really open and honest about some of those very important moments in her life. And personal moments she shared with them.
Alice: Absolutely. And I loved what she was saying about when she was talking about the kids in Those Around Us. Where she said that honesty allows the kids to express their fears and then allows you, as a parent, to sit with them in it.
Alice [Cont.]: That actually reminded me of a part of the book that I read, a part of Doctors Get Cancer Too, where she was talking about how she was really struggling when she was in hospital after her first surgery. She was approached by a doctor colleague, and they didn't try and talk her out of feeling scared or anything. They literally just sat with her.
Alice [Cont.]: And I thought there was a really nice parallel between the way she sat with her kids in their fear and that doctor sat with her in her fear. And I thought, yeah, you could tell that she's honest with her kids about her experience because of how honest she was with us about her experience. And I thought that was really, really interesting. And I'm very, very grateful to her for that.
Toby: Alice, tell me, what were your afterthoughts on today's episode?
Alice: My afterthoughts on today's episode of AfterThoughts were particularly about returning to work. Work is such a big part of what we do and who we are, and I think especially for a doctor. And I think it's really important to remember that lots of people do want to go back to work.
Alice [Cont.]: Work might be very, very different from what it was before you were diagnosed. My work changed completely after my diagnosis. If you told pre-cancer Alice that she'd be doing podcasts about cancer as part of her work, she'd never have believed you. But I think there's something particular about supporting the young adult cancer community back to work. I think there's a lot of work that we could be doing around that.
Alice [Cont.]: And I think it's really important to keep having conversations about how we can support the young adult cancer community back to work. What about you? What's your afterthought on today's episode?
Toby: I've actually got two, Alice, today. I've got two afterthoughts. I know that's slightly cheating a little bit. Well, number one was looking at this moment of going through treatment when we're in the middle of a global pandemic.
Toby [Cont.]: Philippa talked about that feeling of having to go there on her own, having to be in ICU on her own. And we know that it has had a huge impact on cancer treatment in the UK and across the world. We've only heard about it impacting our NHS and things a lot of the time, but across the world, this is it. And it will all ripple on, and I think we heard a really personal perspective on that, of the difficulties of and the concerns about having to go and do those moments on their own.
Toby [Cont.]: I think about Hold Your Hand campaigns that have been run in the young cancer community. This cancer coalition has been running that about making sure there's a hand to hold, particularly for young people going through that. But it's across the board as well. I think that really landed with me.
Toby [Cont.]: The second thing for me, though, as somebody who has also had bowel surgery at a time in my life, is just really noting the powerful nature of a single fart.
Alice: Ah, yes.
Toby: And I really appreciated the fact that Philippa mentioned about that and how little we appreciate those rumbles that go on. And the moment when that rumble becomes something that just really showcases your body is alive, that it is doing what it needs to do. So please appreciate those moments. Appreciate the moments of passing wind.
Alice: Does that mean I have to appreciate when my husband does a massive trump?
Toby: It does indeed, yes. And at the moment I am going to go downstairs, and I'm going to sit with my elderly cat. I'm going to give her a stroke. And when she's feeling nice and comfortable, Alice, what happens is that my elderly cat decides that that is the time that she releases wind. And my word, it is horrible. But it is this delightful thing of going, "Well, her bowels are working."
Alice: And at least she's comfortable.
Toby: At least she's comfortable. And-
Alice: And on that note, Toby, what a perfect way to end another episode of AfterThoughts by talking about pumps.
Toby: Yeah. Thank you so much to Philippa for being with us, sharing her stories and-
Alice: And thanks, as always, to our listeners for sticking around for another episode of AfterThoughts. We couldn't do it without you.
Toby: We'll see you soon.
If today’s episode of AfterThoughts has brought up any thoughts or feelings that you’d like to speak to someone about, we really recommend grabbing a cuppa with a friend or dropping them a message.
There are also tonnes of charities out there who can help you if you’ve been through cancer and need a bit of extra psychological support.
Thanks so much to Trekstock for supporting another series of AfterThoughts. Trekstock helps young adults diagnosed with cancer get moving again after cancer stops them in their tracks, and their work is incredible. Find out more at trekstock.com.
This series of AfterThoughts was created in partnership with Life Effects by Teva - an initiative shaped by patients, for patients, to help those with chronic illness live better days. Find out more and read articles written by those living with and beyond cancer at lifeeffects.teva.
NPS-ALL-NP-00533 FEBRUARY 2022