Bowel Research UK’s Patient and Public Involvement Manager Sam Alexandra Rose is joined by Simon Boddis to discuss the nuances of cancer language. What language does the media use to describe people with cancer, what do we say to each other in society, and how does that make us feel? Simon was diagnosed with bowel cancer in 2020 and has a permanent stoma.
Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra Rose. I’m the Patient and Public Involvement Manager at Bowel Research UK, and as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Hi everyone, today I’m joined by Simon Boddis and today we’re putting the world to rights in regards to cancer language. How do we talk about cancer as a society, in the media, to our loved ones, and what impact does that have? So Simon has mainly worked in the public sector. Joining the Home Office around 30 years ago as a forensic psychologist, he is now Chief Executive of User Voice, a charity established to give those with lived experience of the criminal justice system a voice in service, delivery and policy. Simon was diagnosed with bowel cancer in 2020 and has a permanent stoma. I’ll let Simon tell us a little bit more about his story in just a second. So Simon, welcome to the podcast.
Simon
Hi Sam, how are you?
Sam
Yeah. Good, thanks. How are you doing?
Simon
Yeah, I’m all right, thank you.
Sam
Good, good. So I gave a bit of an introduction for you there, but tell us a little bit more about yourself and just how you came to be sat here talking to me today.
Simon
Yes, I was going to say journey, but that’s one of the words we might discuss [laughter]. I don’t know how appropriate that is. But so yes, like you said, I had a major operation. I was diagnosed with bowel cancer and had a permanent stoma. The cancer has now spread to my lung, and I had half my left lung removed earlier this year in 2023. And I hadn’t given much thought before then to the language around cancer. And so. But after you’ve been diagnosed with cancer, you do you think about the impact it has on you and reading the media and things. And so I started reading things. The stuff I was reading didn’t resonate in any way. It felt and helpful, felt that it wasn’t supportive. None of the other people I knew who had cancer used the same sort of language, so it was all, it all seemed a bit strange and. We’re going to talk about how I think it affects people, but. It just seemed to misrepresent the truth of what cancer was really like, certainly to me, and I expect other people as well. Hence getting in touch with you and suggesting that it would be quite interesting to have a conversation about the language, the media language around cancer.
Sam
Yeah, I agree. I think that a lot of people have similar issues with some of the language that is used in the media. And I know that there is some specific language that springs to mind for me when we’re talking about language that’s used in the media, but what language, what’s kind of the first thing that you think of when we’re talking about the language that the media uses to describe cancer or people with cancer?
Simon
It’s usually there’s a love of metaphors, but it’s not. It’s not. It’s not metaphors that at all appropriate. We can talk about if there are helpful metaphors later, but it tends to be military type or sporting type metaphors like battle. Or like fights, or like, losing the fight or being a warrior or war and those sorts of strong words and they just don’t resonate. And I did actually when I first had cancer, I did think maybe that was the language to use myself. So I did think about fighting my own cancer, but then it just seemed so illogical. How do you fight your own body and what does it actually mean? So yeah, it just. Just didn’t mean anything to me. Yeah, and actually. Started making me quite cross because it was almost victim blaming because if you weren’t strong, you didn’t battle hard enough and you got and you got iller then somehow it was your fault as a character weakness and that which is why I think the language is really important that it doesn’t make you as a cancer patient, someone who then is blamed if you get iller because all those words imply that somehow you haven’t got a strength inside of you to carry on the battle to fight. And I think all of us who have had cancer at times just know how awful it is. Then it’s not a battle. It’s not a fight. You’re just living with cancer and. Yeah. So that that was it, really.
Sam
Yeah, that that’s what sticks out to me as well as soon as somebody says language used in the media to describe cancer, I think yeah, that’s the, that’s the battle language. It’s the war, the warrior and they lost the battle and they’re fighting. They’re a fighter. All of this sort of stuff. Which yeah. Doesn’t really resonate with me either. And I suppose I should say that some people will like this language. I know a lot of people don’t. But I know that some people may find it empowering to describe themselves as a fighter or being strong, or being a warrior. And if that’s if you’re listening and that’s you, you know, more power to you. I think that that’s if you’re using that language to describe your own experience, that’s great. I think that when it’s used so universally by the media and it, it just seems to be the go-to language, doesn’t it that that people use now, I think can we have something that’s a bit more neutral? Otherwise, I feel like we’re projecting this one image of cancer onto everybody’s experience when it may not resonate with everybody and everybody might not feel that way.
Simon
Yeah, I couldn’t agree more, actually. And you’re quite right. I mean, people who have cancer, they’re fully entitled to use whatever language and whatever visions they have about their cancer, and that I have absolutely no problem with that. But what I do have an issue with is the language that’s used by the media because I just don’t think it helps. It doesn’t represent the truth. And like I said before, there is an assumption there that if you somehow don’t get better or if you get iller, it’s your fault because you weren’t strong enough. You weren’t resilient enough. You didn’t battle hard enough. Didn’t do that and just the last week, for example, I’ve been just idly looking at the Daily Mail, which is the biggest selling newspaper in this country and every day bar one there’s been a story about somebody battling with cancer.
Sam
Every day.
Simon
Every day bar one. So it’s very common parlance, and that’s actually across the media sphere. Actually, the BBC uses it, The Guardian uses it, you know it’s a very common currency across the media and so I just, it would be nice to have that addressed a bit and changed a bit to reflect our reality or most of our realities.
Sam
Yeah, absolutely. And I’m, you know, obviously working for a charity, I have a bit of say here and there in what we put out on our social media, for example, ‘cause I’m the Patient and Public Involvement Manager. Sometimes we’ll put something out on social media about the different projects that we’re being involved with and even I’m having to sort of think really carefully about, you know, how, what is the wording and yeah, it’s just trying to be very neutral about how we, yeah, how we talk about it because it’s just so ingrained, isn’t it? And I was reading a book, and I think I mentioned this when we were kind of chatting and we were planning this episode of the podcast, that I read a book by Susan Sontag, called Illness As Metaphor. It was back in the 80s, she wrote AIDS and Its Metaphors and she also wrote Illness As Metaphor. So obviously the one about AIDS was all about the language used around AIDS. And then Illness As Metaphor was around cancer and then also TB. It was really interesting because she was talking about how, as you say, all of these metaphors are used to describe cancer, and she was saying that there was also metaphors used to be used and different sort of language that didn’t really fit to talk about TB and then kind of a cure came along for TB and it’s like, OK, now we understand the science behind this, we know what it is, we know how to tackle it, how to treat it. And the metaphors went away. And in her book, she kind of has this this hope at the end, which is quite uplifting, that if we can find out more about the science behind cancer and how we can treat it and demystify it, because obviously cancer is a lot of different illnesses. You know, there’s a lot going on there, but if we can demystify it and help people to understand it, then maybe eventually the metaphors will go away, which I thought, yes, absolutely. I would love for that to happen. That would be great.
Simon
Yeah, it’s quite interesting actually because talking about campaigning and it’s a bit of a side issue, so. A few cancer charities talk about the war on cancer. Now I don’t have much of a problem with that, because that’s not an individual basis, and if that’s what it takes to grab headlines and things, and actually track people I get that. A bit this like the war on drugs and the war on alcohol or the war on poverty and I get the use of that language, that context, but I’m talking more about, yeah, on individual level, what what’s actually appropriate for the individual to use? Yeah. So, I think there’s a difference there between the two.
Sam
Yeah. Yeah, I think so, yeah, I definitely understand. Yeah. Difference between kind of what we’re. When we’re talking about kind of as a whole and more generally and yeah about the individual. And then the media also seems to go another way. And I guess we all sort of go another way as a society as well. So you have this kind of war and this battle language and losing the fight and all that sort of stuff. And then we have this kind of… Like the word victim, for example, or sufferer or so and so is suffering and that was something that came up recently in some something that I was looking at and I was thinking, is the person suffering, you know, these, this group of people that we’re talking about have they said that they’re suffering? I mean, they probably are, but you know it, it just seems like a bit of a loaded word to put onto a person. So victim and suffering and sufferer, what’s your take? On that one.
Simon
Yes, I mean just going back to the battle thing, it’s usually a long battle, which then implies that if you had a short battle, maybe that’s somehow your fault again, but the occasional short battle is used, but it’s usually after a long battle. But. The other word sufferer. I’m a bit more ambiguous about that because there’s no doubt you do suffer at times, you feel you feel like you’re suffering. But I think that’s your word to use, not a word for other people to use about you and to use in a random sort of sense about everybody with cancer as a sufferer. It’s about, it’s if that’s the word you would choose to use, but it’s not a word I’d like to be applied to me, because again, it seems like it disempowers you and turns you just purely into somebody who’s suffering, which you’re not, just that, you know, people with cancer have a whole life with a side helping of cancer that at times dominates, at other times doesn’t dominate. But we’re people first and we should, the language should always reflect that. You know we’re people with cancer, we live with cancer, we don’t, we aren’t defined by our illness and using words like suffering tends to sort of define you as just purely a sufferer or a victim or whatever.
Sam
Yeah, my thoughts exactly. Yeah. Took the words right out of my mouth there. And I have a little list in front of me of, of other words. And you mentioned journey earlier. So should we go to that next because my kind of go to neutral word at the moment is “experience”. Which I don’t know if that’s kind of underselling the cancer… experience is the only word I can think of to use. Yeah, I don’t know if that’s putting it a little bit mildly, but journey and again, I know that we we’ve talked about this. Before and we had similar ideas on the connotations for the word journey as well.
Simon
Yeah, well, as somebody who really enjoys travelling and journeys, if this is a journey, it’s the worst journey I’ve ever signed up for. And actually it’s much more like a hijacking than a journey. And I just think that the language of a journey implies some sort of choice in the matter and some sort of, you know. You’ve decided to get on board something and then embark on something that’s usually and journeys are usually on the whole exciting, stimulating learning things that you do for, for enjoyment or work or something. But to use that as, to conjure up the sort of feelings you have with cancer. It it’s. It really isn’t, I don’t think, a journey. It’s, I think your use of the word experience is much more, because you do experience it, but also again, you don’t have a separate cancer journey from your separate life journey, and the two are intrinsically linked. And again, you shouldn’t try and separate out the two. I don’t have a separate cancer journey that’s separate from my normal life journey. If that’s. It’s just life. And that’s how I see it. Life with experiences.
Sam
Yeah. Also, to me, a journey has an end and a destination, and I, for me, I don’t really feel like cancer has an end and that would depend on people’s different experiences. Some people listening may know that I’ve had cancer three times, and I have an ultra-rare genetic condition that increases cancer risk. So I’m constantly having to go for, like several checkups every year in in various ways to, you know, see if I’ve had another occurrence kind of somewhere else. And I guess as well it will be different for people who perhaps had one instance of an early-stage cancer and you know they’ve psychologically felt able to move on from that compared to perhaps somebody with stage 4. And again, yeah, all the experiences are going to be very different, but to me a journey as you say, indicates something separate from your life, which is weird, and also yeah, something that ends, and you know, yeah, that depends on experiences that may or may not resonate.
Simon
Yes. And I agree with you, but also journey seems to imply that you have some sort of choice in the matter that you could stop the car or you could you know change your plane and go somewhere else. But actually, you know, cancer is what it is, and it’ll be whatever the outcomes will be, whatever the outcome is down to luck. Whatever medicine. Whatever. But it’s largely out of your control and you can do what you can to stay healthy and stay fit. So, it’s not entirely out of your control, but large parts of it are out of your control and it’s not a journey you can choose to stop. So, journey implies well, I will choose not to go on holiday though this year, I will choose to go somewhere else. I will choose to move hotel, I will choose to do that. You can’t really do that with cancer. I don’t think, which is why I think it’s unhelpful to use that word.
Sam
Yeah. And it sounds like kind of control and choice comes up quite a lot as well when we’re kind of debunking these things because we have the journey, as you say, you can’t, you didn’t choose to go on this. On a bit of a jolly, basically is what it makes it sound like, but then also just going back to the war language again, that conjures up ideas of control because as you say it, it kind of makes it sound like people can choose to fight or choose to fight a certain amount. And you know, if they, if they lose the battle they didn’t try hard enough and yeah, again gives this illusion of control and choice in both ways when actually yeah, that there is very little of that in my experience.
Simon
You’re absolutely right. And I think one of the things that may be why I feel strongly about it and maybe other people don’t, but when you have cancer, you lose a certain amount of control in your life. Because you don’t know about how it’s going to spread or if it’s going to spread or treatments or whatever. So, the things you can control are things like language about how you, how you talk about it. Those are the sorts of things you can control. So, when that control is taken away from you and other people use language that you feel is inappropriate, it’s almost like you’ve lost a bit of. Control over this. Which is I think one of the reasons I feel so strongly about it, because you know, having given up a lot of autonomy or giving up some autonomy and a lot of autonomy at times, you control what you can control. And one of the things you can control is how you describe your cancer and how you feel about your cancer and how you talk about your cancer. So, I think that’s one of the reasons I feel quite strongly about this is because it is about control and I think most people, most people I know with cancer who speak about cancer like to control what they can control because some of the stuff just isn’t controllable.
Sam
Totally. Something that we spoke about earlier made me think about this. I just wanted to come back to about how the language that’s used in the media affects how we feel about our bodies, and I can’t remember exactly what it was we were talking about, even though it was like 10 minutes ago. It was like nothing. But yes, we were talking about how the media, the language that the media uses. And I was saying that I find it… That I have to think actively sometimes as well about the language that I’m using, even though I’m kind of like, you know, rallying against it anyway. But when the media uses language that makes it sound like cancer is perhaps separate from us, or that we’re fighting. We’re fighting our own bodies you mentioned. And yeah, I had a bit of an experience quite a while ago and now where I kind of realised that I was talking, sort of internally to myself as if my body was the enemy and I had to kind of deprogram myself and kind of straighten my thinking out like, you know, my body is not the enemy. You know, one thing that’s happening inside it, or that could happen inside it is, is the enemy. And yeah, it just made me think that the way that the media uses the language could perhaps also affect how we feel about our bodies as well.
Simon
No, I totally agree. I mean, the idea of going to war on your own body is a bizarre one and I think what is quite interesting is that healthcare professionals don’t tend to use this language either. I haven’t had a healthcare professional say to me, “oh gosh, you’re so strong, Simon” or you know, “well done” though. Actually, the well done one was quite strange from my, after my last scan. So I get scanned every three months. After my last scan, my consultant did say to me “you got a clear scan, well done”. And I was thinking I had absolutely nothing to do with that clear scan. But I mean, I’ll take the praise but really, what did I have to do with this?
Sam
Yeah, that’s quite a funny one. I think I would quite like that. I would feel quite like ah, I’ve done nothing but yeah, as you say, going to take the praise anyway.
Simon
Yeah, quite.
Sam
Like you’ve done well on an exam or something.
Simon
Yeah, exactly, exactly. But behind that is a is a sort of a slight element that, that and I’m sure he didn’t mean it like this, but there was a slight element that it could have gone the other way if I’d done something different. So somehow my behaviour must have been such that I was being rewarded for a clear scan. And I was thinking, I’ve changed nothing. And I’m not consciously trying to, you know, I’m trying to be as healthy as I can, but that that’s it. You know, I’m not. I’m not. There’s nothing. That that. Because I didn’t act inappropriately when I had, I don’t blame myself for having cancer either. I don’t look back and think, oh, I did all that and then therefore I got cancer. So, you know, if I’d got cancer would somebody have said “oh you’ve, you’ve been a bad boy”. They wouldn’t have done. So why praise me for not having it or having a clear scan?
Sam
Yeah, yeah. I was just thinking that your consultant wouldn’t say to you like “ohh your scans not clear. Tut tut. What have you been, what you been up to?”
Simon
Exactly. Exactly.
Sam
Just thinking then. If we would like to… The media to use kind of more neutral language. And we’ve talked about saying experience instead of journey. Do you think that it’s just about, like, ditching metaphors entirely and just, you know, speaking completely plainly? What do you think that kind of a neutral language the media should be using? What you think that might look like?
Simon
I think, I mean, somebody actually produced a sort of metaphor dictionary for cancer which is quite easily available if people are interested in it, but I don’t find metaphors helpful because I think they hide the truth and I think they they’re useful in some forms of literature and they’re useful in some forms of expression, but I just like living with cancer, lived with cancer, living with cancer, because that’s what it is really. You’re living. You have all the normal frustrations and aggravations that you had before. You know, you still have to, you know, your Wi-Fi goes down. You have to try and fix it. You still got bills to pay. You still got all those other things to do. But so that’s you. And you still got your family to look after if you have one or whatever, you still have all those things, but you have this side helping of cancer. So, it’s you plus cancer and the cancer doesn’t define you. At times it does because you have to go to hospital and you have to sit in, you know, fairly unpleasant waiting room sometimes. And you have to have fairly horrible things, done to you sometimes. But it doesn’t define you. You’re always living with it because you as a person with this, this side helping of stuff that you didn’t ask for and nobody would ever want. But you have to deal with it, and you have to cope with it. But intrinsically it’s you plus this thing on the side. So, I always think living with cancer. It works for me because that’s what I’m doing. I’m living with cancer. But and it doesn’t define me as having cancer, it just means I’m Simon and I have cancer. I’m Simon, I wear glasses. I’m Simon, I like checkered shirts. It’s. I think more serious than that. But. But you know what I mean. It doesn’t define me.
Sam
What about then how we talk to each other or how have perhaps people talked to you about it, moving away from the media a little bit and thinking about society or about, you know, just family and friends and loved ones and how we talk to each other. Are there things that you think like people say to you that you prefer them not to say, or I mean, I have from my previous kind of list of words I also have “you’re strong” or you’re kind of, “you’re so inspirational” sort of thing on my list, which is meant with good intentions and you know, I receive anything like that well because of that. But again, could be a little bit loaded?
Simon
Yes, it’s not. Yeah. So, I think I think people who are really close to you who have who have been or been very privy to some of the experiences that you’ve had with cancer. So my wife, for example, has, you know, at some stages has had to be my career. And sometimes I think it’s been worse for her than it has been for me. So. When she talks to me about it, I think she has a huge amount of insight into it and a very different sort of insight to me. But she has a huge insight to it. And so, whatever she said to me about it couldn’t upset me. What upsets me more, I think, and it’s not people who you’re really close to. It’s sort of acquaintances or casual friends. And it’s things like “I understand”. No you don’t, you haven’t got cancer. “The next scan will be OK”. How do you know that? “You might get hit by a bus tomorrow, so don’t worry.” Well, yeah, I might do, but I don’t… If you’re worried about being hit by a bus tomorrow, you don’t spend months of your life anguishing about it and get stressed every three months because you got a scan or you’ve had lots of procedures so. You know that they use that sort of language. Things like you know, this morning, I was, I was out, and someone said, oh, you look well. And I was thinking, you know nothing about me, don’t… I mean it’s, I suppose it’s meant as a compliment but actually. How do you know? I’ve, you know I’ve got cancer. What? Why are you telling me I look well? Is that something? Is that providing me with some sort of reassurance that I’m not really very ill or what? What? What, what? What does it mean? You don’t look ill. Well, what am I supposed to look like? Am I supposed to go around sort of, you know, looking, I don’t know, looking like a quote, survivor of some horrible incident. And then there’s things like “I really admire how you’re coping.” Well, I’m not… You have to cope. You, you. You know there’s. You don’t know if I burst into tears at 4:00 in the morning. You don’t know if I’ve got insomnia. So how do you know I’m coping with this thing? You don’t know? I just appear to be coping. And even some of the sort of, the most, the most common sort of thing you get, and this is, this happens. This is just part of our way. of talking to each other in English, I think it’s very common. It’s people ask you how you are. Now usually, they don’t expect a response to that question, apart from, “all right”. Because people always say, you know, before I had cancer, I used to say to people “How are you?” And people go “I’m alright”. But when you do have an illness and cancer, in my case, there are just times… it normally doesn’t trigger me very much, but there are, there have been one or two times when people who know I’ve had cancer, who know I’ve just come out of hospital or whatever cause my wife spoke to them, and they go “how are you, Simon?” And I’m going and I just unload on them. And I try very hard not to, but I have at times just said “well, it’s actually pretty awful. I’m in real pain. I can’t do this. I can’t do that.” And then they just look shocked that you’ve actually answered something they’ve asked you and you’ve answered really openly.
Sam
Well they did ask!
Simon
They do and that’s always my view. And then I go away feeling guilty and thinking “oh dear”.
Sam
Ohh yeah, well that shouldn’t be on you to feel guilty for answering a question that they asked.
Simon
No, no because but. But I think it’s so much part of our normal discourse when we talk to people is to say “how are you?” and everybody goes “oh I’m fine.” I’m fine. Let’s not be honest about this. And then when you are honest about it, and it’s only happened a couple of times. But I, yeah. And I’ve regretted it afterwards because I’ve thought well that person didn’t deserve that. They’re just trying to be nice to me. And all those comments I’ve made are people trying to be nice to you. But not having the language and not having the understanding. And I’m sure I was equally guilty beforehand, you know, before I had cancer, about how I felt towards people with cancer. So yeah. So that’s a list of my sort of things that are said to me that occasionally wind me up.
Sam
Yeah, the “how are you?” is a tricky one. I remember kind of, I would go to work or wherever when I was having my second and third cancer diagnoses and going through everything and somebody would say “how are you?” and I would think, I don’t really have the energy to go into how I am, but also, I don’t really have the energy to lie. So I really just don’t know how to answer this question at all.
Simon
No, but and it’s and it’s quite interesting. Even when you’re in hospital after, you know. I’ve had two operations. One was about 12 hours and one was about 9 hours. So. Fairly major stuff. And you wake up the next day and there’s some consultants surrounded by a gaggle of students and “how are you, Mr Boddis?” and I’m going, what do you think I’m like?
Sam
But I do as well think that I would rather have people say these things to me than not say anything because I did send somebody a message about how I was having an upcoming operation and they didn’t reply, and I sent them another message. I don’t know. Must have been days or a couple of weeks later. And they replied and they said “Ohh sorry I didn’t know what to say. And then, you know. Time dragged on and it got too awkward to reply”, which is like kind of fair enough. But also, I would accept anything over silence.
Simon
No, I totally agree with you and what is far worse than the things I’ve described is people who avoid talking to you, or who you’ve told and then ignore you or ignore the topic and I think that’s why I feel guilty when I sometimes have said, well, actually this is how it is. And then I can think of one example where that person just avoids me now because I and I, I don’t think it’s cause of me. I think they just don’t know what to say. And I was too honest and too. So that’s my fault in some ways because I was just too honest and a bit brutal about how it really was and because it. Was just a bad day, I suppose. But yeah, so I totally agree with you. I would rather have these platitudes, which let’s give you, least give you a basis for human contact and a conversation than avoidance, which is just makes you feel really bad because you’re being avoided for something you can’t control. It’s not as if, you know, it’s anti-social behaviour on my part, it’s something antisocial has happened to me. And so, you know, it’s not my fault. So don’t, don’t. But I would much rather people spoke to me about it. But I do notice a lot of people avoid it because they don’t know the language. They don’t know how to talk to you about it and then get a bit shocked if you get real about it.
Sam
What about… and this just occurred to me. Positivity, perhaps toxic positivity. I just noticed on my notes I wrote down “everything happens for a reason”, which again, some people believe. If somebody said that to me about my cancer, I wouldn’t be too happy about it. But yeah, so I was thinking about that. Toxic positivity. You know, just stay positive and you know, things will be alright.
Simon
Yeah. Which I mean it’s sort of a great mantra and of course we should all stay positive because I’m sure that’s probably good for us, but it’s not always possible. Maybe it’s not always desirable either, because sometimes by staying relentlessly positive, you’re denying reality. I’ve never tried to be relentlessly positive. That’s not my nature. But. But it’s. I think it’s covering the truth if you just try and be positive all the time about it. You know, people say “take one day at a time”. Well, there have been times in my cancer experience when it’s been the next minute that I want to get through because it’s been so awful, isn’t it? Never mind taking a day at a time. It’s taking a minute at a time and it. It depends. But that’s my choice. To do that, you know and. So yeah, so. Yeah, I mean, toxic positivity is quite an interesting way of, of framing it and. And again, I think people mean well, you know, but again it’s a bit. It’s a bit victim blaming because if you’re not positive, then somehow you’re letting yourself down or letting people around you down or somehow and it’s not possible to be positive all the time. You know you can. You can. You can try to be and I think I think. Certainly for me and I think other people with cancer, we try and be positive about the future, but that’s very different from being day-to-day, you know, seizing the day every day and being really positive because some days are literally so awful that you can’t feel positive about it, and you are allowed to have a cry. You are allowed to feel depressed, you are allowed to feel sad. You are allowed to feel that it’s unfair. But then you carry on. But that’s just part of life. You know, there are things that happened to me before I had cancer that made me feel like that. Cancer is just another thing that affects you like that.
Sam
Yeah, it’s another example of that illusion of control really, isn’t it?
Simon
Yeah, yeah, absolutely. Absolutely
Sam
You know, stay positive and you can control it.
Simon
Yeah, and but, but I think we all probably do it because I think without calling it that, so for example. I don’t talk about my cancer to my wife every single day because what would be the point? It would just be a miserable conversation every day. So we largely don’t talk about it. And when we do talk about it, it’s because one of us feels we should talk about it because something’s coming up or there’s been a diagnosis or something. But we don’t. I don’t feel the need to constantly talk about it, and I don’t want to give the impression that it’s good to, you know, maybe some people is constantly good to talk about it. I don’t find it helpful to talk about. That, and in fact, despite the fact that I hate the way the media covers a lot of this, I tend not to read stories about cancer because I find them quite triggering. I find them quite, you know, they bring back horrible memories. So I do tend to avoid them as well. But. But then when they use the language they do use, it just infuriates me so that the whole thing becomes… which is always quite positive. We get angry about something else. So if someone is a bit of a virtual circle and that stuff, but you know, I do. I don’t know what other people do, but I tend to avoid reading about cancer when it’s other peoples, when it’s stories of cancer, because I don’t. I don’t like it and it affects me.
Sam
Yeah, yeah. It can affect me too, and I’ve spoken about this on the podcast before, for people who’ve listened to previous episodes, but the dangers of Googling, which I know, Googling kind of your symptoms and things, things like that is very dangerous territory anyway. But if I’m, if I want to research something or if I want to look at other people’s stories because of something that’s going on in in my life, I think sometimes I might read something and think ohh yeah, that’s really helpful. It’s, I can empathise with that. That resonates with me or this particular part makes me feel quite positive if I’m worried about something that might happen to me. But then I might read further and then end up down this rabbit hole and I really need to think about just… It’s just a way of implementing self-care for myself and being mindful and just constantly checking in with: I’m still sat here reading this. Is this still OK? Is this still making me feel OK or, you know, is this gonna send me spiralling into despair basically. So yeah, I think there’s definitely kind of elements of self-care when reading about other people’s stories.
Simon
There is and it’s quite interesting. In fact, happened to me today, so I was… I had a meeting and I was on a train and I was I was reading a book. And it was just a. A yeah, pretty rubbishy thriller, but suddenly one of the characters starts dying of cancer, and I just then skipped 10 pages. I thought I don’t want to. I don’t want to read about this. I don’t want to hear about it. It’s probably not accurate anyway because the rest of the book is a bit inaccurate anyway, but I just thought I just don’t want to read about this. I don’t want to hear about this because it just upsets me. I get quite vigilant about cancer stories and things and reading about cancer. So yeah, so. So I do avoid those things or I do what you’ve just suggested because sometimes it’s very difficult to avoid Doctor Google, isn’t it? And you look at symptoms and you look at treatments and you look at, and sometimes that actually can be useful. But the thing, I mean, I went down a real rabbit hole of looking for sort of future prognosis and all that sort of thing. And I think that’s probably not unique. I’m not unique in that because doctors won’t tell you. And understandably I think why they won’t tell you. You do that and then you really go down and sort of trying to interpret, sort of very difficult stats that then you realise they’re 20 years old and all those sorts of things. And so you just. I’ve learned not to do that, but I think I think it would almost be helpful to be told not to do that, and because it’s just, it’s just, I mean it’s almost a way to becoming mad, isn’t it, if you just go down, you just search and search and search. And actually what you’re looking for is the positive answer. And yeah, you probably maybe not find that. You’re just going to find a load of scary stories.
Sam
Yeah, if you do find something vaguely positive, then find it, take it, and then stop. Just cut yourself off. It’s a bit like gambling, I guess. Like, quit. Quit while you’re ahead. Sort of thing.
Simon
Yes, exactly.
Sam
And yeah, just thinking about kind of the stories in books and also in movies and things. I haven’t watched the second Deadpool, I haven’t watched ‘cause… I watched the first one. I enjoyed it. I enjoy Ryan Reynolds, but my partner went to see the second one at the cinema and he said it’s very cancery. Don’t see it. I’m like, OK, fine. Thank you. There’s actually quite a good website called DoesTheDogDie.com and I guess it was originally to warn you if a dog dies in a movie. So you can search for the movie title or the TV title in their little search bar. And I guess it initially used to just tell you does the dog die? I guess, but now it tells you all sorts of stuff, it tells you if a character experiences a whole range of different traumatic events, and, yeah, cancer is one of them. So if you do need to, like ohh yeah, quite fancy watching this, but is it going to be cancery? You can do a quick look on DoesTheDogDie.com and it will tell you, which is useful.
Simon
How interesting, yeah very useful. I mean there there’s a whole series of films that that I just won’t watch but. But because the cancer narrative is the media presenter that actually makes a very good narrative for a film so from Love Story onwards and perhaps before Love Story, there’s a whole series of sort of romcom relationship films where usually the heroine has some mysterious illness, probably cancer and will probably die but is battling and is still in love and weaves in a whole subplot around that as well and. And I just can’t watch that sort of stuff. But it is quite a Hollywood staple. It’s not. It’s not but. It’s so it’s unrealistic as well because they always look very pretty. They always got perfect bodies and they, you never seen any unpleasantness associated with having cancer apart from maybe the odd discrete chucking up moment, you know it. It’s just. It’s not real and it just candyflosses it. As it as if. Yeah, it’s just some little irritant.
Sam
What about any positive stuff in the media then? For example, celebrities who might be in the media quite prominently because they’ve had a cancer experience, and maybe they’re like raising awareness in a positive way and showing their journey and that sort of thing.
Simon
Yeah, it’s, it’s, it’s a really interesting one. ‘Cause I think there is sort of two categories of people who might be termed celebrities who have cancer. There are people who are celebrities already. So, you know, famous singer or actor who then their diagnosis becomes public, and if they, I don’t know whether they decide to make it public or whoever, so becomes public. That’s one type of celebrity. There’s a smaller group of people who become well known because of cancer. So people like Deborah James, for example, I’d never heard of her till she had bowel cancer. And I think her podcast she did with the other two women was astonishingly brave and open about what it’s like to have cancer and how real it is. What I didn’t like and suspect she had no say in the narrative and but maybe she found this language helpful, is that the papers went back to talking about battle and fight and those sorts of things which was not a language that was at all used in her podcast at all about cancer. So I don’t believe she used that language. Well, maybe she didn’t episodes I missed, but. But she didn’t use that language nor the people she was making the podcast with. So I think the podcast did a great job about awareness and I think there are there are some campaigns, you know, like warnings on toilet paper now about the symptoms of bowel cancer. I mean, that’s great stuff, you know, and presumably the same happened with tobacco, but the warnings on tobacco and what illnesses that that can cause. So I can see that that that when it’s talked about really and it’s talked about how what it really means to people, it’s really helpful to get well known people who have a voice that can say it, but then to have that voice diluted and then turned into metaphors and turned into something very simplistic. Just again, I think. I don’t know whether people have that choice when that language is used about them. I suspect not because it’s not the language they use when they’re when they’re talking about their illness. I find that really unhelpful again, and I find it demeaning to them unless they’ve had that choice, unless they’ve wanted to use that language because it’s really not helpful to us. And it doesn’t talk about the reality. They talk about the reality, but then somehow it’s dressed up as something else that ohh you look very pretty in this dress and oh, but it’s not about that. It’s something deeper than that. So yeah, so. I’ve got very mixed views about it. I think when people whose celebrities are allowed to talk very openly about it, and the realism of it, I think that’s great because I think that’s proper campaigning. I don’t think it’s campaigning just to say, well, look at her or look at him having a marvellous battle with cancer that just isn’t helpful for anybody. As far as I’m concerned. Other people might find it helpful. I don’t.
Sam
It almost sounds like people with cancer and the media are speaking two different languages because what you said there almost sounds like the media is kind of seeing this information that people with cancer are putting out there and then translating it into newspaper-ese or something. Yeah, it’s as if we’re speaking two different languages.
Simon
Yeah, I mean I always think it’s just lazy journalism because it’s like a metaphor you can just reach for and it’s used so often and it’s usually used in the headline as well. So it’s an instinctive reaction. Someone’s got cancer. Someone’s got serious illness. Let’s use the word battle because that shows how strong and powerful they are. And I think if I’m being charitable, it’s also to describe that this is really quite important because they’re having to battle. So you only have wars and battles when it’s something really. Important and something. So that’s my charitable interpretation of it. But it’s. I think it’s very bad and unhelpful shortcut to how, what it’s really like and like I said, I think it undermines a lot of us who have got cancer. You feel well, it’s not really like that. Why don’t you, why don’t you report what the truth is? What it’s really like? Without being over graphic and without, you know, without, you know, wanting to wallow in misery. But just. What it’s like to live with cancer, just report it.
Sam
And if Deborah James had been on her podcast and she was using, like battle language, and then the media was using it because she used it. Do you think that that, would that then kind of, would it be OK to use battle language in that instance? Do you think because they’re kind of going off of how the person themselves is describing their own experience?
Simon
Yeah, I think I well, I’d have mixed views because I, like I’ve said, I think people are entitled to use whatever language they want about their illness and because it’s their illness. And if that helps, then they’re perfectly entitled to use whatever language. I mean, I don’t think she did, but if she did use that language, then I’d like to see it as a quote, rather than translated into “all cancer is a battle”. Which is what really happens, so you know. But like I said. People are perfectly entitled to use whatever language they want.
Sam
Yeah. No, I totally agree and sort of as I said at the top, if using battle language and that sort of thing helps people to describe their own experience and feel it empowered and strong, and that and that sort of thing. And then that’s helpful. I think. I think that’s great. But for the media, I think that there is a responsibility for reporting something in the way that that it is, you know, the realities of it as you say. And then, yeah, there’s lots of different sort of metaphors for it and you know, because I’m, I’m a poet and I’m doing my PhD in sort of exploring my kind of experiences through poetry. I use all sorts of languages, sort of metaphors like. I think that I look at anything in the room and I think “yep that’s a metaphor for cancer.” Look at a tree. “That’s definitely a metaphor for cancer in in three different ways.” Yeah, and yeah, I fully agree that everybody should feel empowered and able to talk about their experiences in their own way, for sure, I think that’s perhaps our headline for this episode. I think we’ll wrap up then. I had two more questions for you actually. One of them is a little bit off topic, but it’s something that I thought of before we were chatting. Because you are the CEO of a charity that is for giving people with lived experience of the criminal justice system a voice and there’s a lot of kind of stigma around, like the cancer language and a lot of things to talk about cancer. I just wondered, is there any kind of crossover because I’m imagining these are both two very difficult things to talk about. So is language something that you think about in, in other areas as well? Do you think about that with your charity?
Simon
Yeah, and actually not so much with the charity, but, but I was very senior in in the prison probation service. And language there and people, people. People sometimes dismiss this as sort of, you know, weakness or political correctness. But the language that’s used about people who have offended has moved through the years. I have railed against some of the language at times and definitely used… so we used to call people convicts, we used to call them inmates, we used to call them prisoners, which is probably, you know, this is people, people who are in prison. So we used to, we used to use those words, but those are labelling words which is partly what I’m talking about now. The language has moved far more now, so what the prison and probation service talked about people in prison. People on probation. And it’s the same as the way I think about people with cancer and living with cancer. People in prison are people first and they’re in prison. They’re people first, and then they’re on probation, so they’re not defined and they’re not labelled as just an offender, because everybody’s more than just an offender, they’ve got something else there, you know, no matter how horrendous their offence might be or whatever. But that, that, that they are people who have done something. So they’re people first and that gives you a, maybe a way of working with people and this is a very different context, criminal justice system, but I think the language is important rather than just labelling people in a certain way, which I would hate if someone just said “you’re cancerous.” I would hate that and well it’s the same thing. I mean it’s just it’s just an awful word to use.
Sam
Yeah, God.
Simon
Because that’s just trying to sum up everybody in one word, real lived experience or people with, people in prison or, you know, living with cancer just makes it, makes people a bit realer. And it’s a bit kinder. And actually, it’s not just like being kind, but it’s actually gives you an opportunity to then start dealing with people as people and trying to identify what the issues might be. So yes, so the language has changed and it’s evolved over the years I’ve been involved in it. And I try and be, I used to, if I’m being very honest, used to think this is a meaningless discussion. 20 years ago I thought this was all meaningless. What does it matter? But as I’ve been in sort of in that system for a long time. And I think it’s reflecting some of my thoughts about cancer, language does really matter. It matters to you as an individual, it matters how people perceive you, it matters how people view you. It matters how the whole media view you as a person and that therefore affects your future, if that makes sense.
Sam
Yeah, and that might be a good place to end because my last question was going to be what one takeaway would you like people listening to go away with? So is there anything else you would like to add as your kind of final thoughts for this?
Simon
Well, I, I suppose perhaps there are two types of people listening and that’s people who have cancer. And clearly the message I think from both of us is use whatever language you want about your illness because that is your right. And so that would be my message there and nothing hopefully that we’ve discussed about has been at all upsetting to people who feel, who want to use the language we’ve been talking about. And just because I find it upsetting as I mean other people can’t use it. But the second audience is people that have no direct contact with cancer. It’s just think about the language you use and think how it might impact on people with cancer and even when it’s done with the best intentions in the world. Just think what the use of metaphors are, what some of the language means. And just think about it, and that doesn’t mean you shouldn’t have difficult conversations with people about it because it is sometimes quite difficult to talk about it. But just be aware and don’t be lazy about thinking what language you use with people. Is that a good summing up?
Sam
That’s brilliant. Fantastic. Simon, it’s been really lovely talking to you about this today. Thanks so much for coming on.
Simon
No, it’s been great. Well, thank you, Sam. Thank you, enjoyed it.
Sam
Thank you for listening to Can I Butt In? This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit BowelResearchUK.org where you can join our People and Research Together network or PaRT; read about our research campaigns and fundraising; or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.