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This podcast contains the personal stories, opinions and experiences of its speakers rather than those of breast cancer now.

I've just finished chatting with Alice May Perkis, who was diagnosed with breast cancer 10 years ago when she was 26. It was an incredibly hopeful, positive, uplifting episode, I think, because not only is Alice coming up to her 10 year anniversary and all clear since having triple negative breast cancer, but she's also someone who has overcome so much in terms of her mental health as well. She suffered with clinical depression both before and after diagnosis, but I think she's in a good enough space at the moment to be able to talk about those things with clarity and in a way that I think hopefully will be helpful to you if that is something that you're struggling with as well. Just a note, we did touch very, very lightly on the issue of... suicidal thoughts. So if that's not something that you feel comfortable listening to then please feel free to skip along in the episode. Finally we also talked about the language around cancer and what to say and what not to say to someone who has been diagnosed with breast cancer. So I really hope you enjoy this episode as much as I did.

Today we're speaking to Alice May Purkiss, a wellbeing and creativity coach who was diagnosed with breast cancer when she was 26. 10 years later, she now supports people in all areas of life, whether recovering from a cancer diagnosis or simply feeling burnt out. In addition to breast cancer, Alice has written openly and honestly about suffering from depression and finding the tools and techniques to cope with her mental health. She's here today to talk to us about living and thriving beyond breast cancer, both emotionally and physically, and whether the words battle and brave should still be part of our vocabulary. Alice, welcome to the podcast.

Thanks for having me. It's so weird hearing that.

Which bit?

Just all of it. It feels a like this is your life.

Well, this is your life.

This is your life, yeah. Well, this is your life.

Yeah. You were diagnosed with breast cancer in 2015 when you were 26. Tell us a bit about your diagnosis and where you were in your life at that point.

So when I was diagnosed, was working in a marketing company, no, I was working in a for money saving website doing their marketing. And I was kind of just doing all the things that regular 26 year olds do. And I'd had cysts in my left breast before. I randomly found this lump in my right breast and I kind of thought nothing of it. I was very, very casual about it. I was like, oh, it's just another cyst. It'll be fine. It's nothing. And I didn't do anything about it for a little while. And then my husband and I were on holiday and we were led on a sofa and he put his arm underneath me, like we were spooning, and he put his arm underneath me and he felt it. And he was like, what is that? And I was like, oh, it's just this lump I found. And he was like, you need to go and get that seen. I was like, oh, it's fine. It's just a no cyst. I'm really busy. Blah, blah, blah. And then my mum, I mentioned it to my mom and my mom used my full name. She's like, Alice May Purkiss, you will go to the doctor. And I was like, all right, fine. If your full name in me, I'll go. And yes, I went to the GP and they said they were pretty sure it wasn't a bad lump. They thought it was a cyst as well. And they said, oh, but we'll refer you to the breast clinic anyway. Went to the breast clinic and the surgeon I saw at the breast clinic said I am 95 % certain this is not a bad lump which to be fair odds on to him it's probably accurate. He said but I will send you down to get some imaging done and then I went to have my imaging done and they took a biopsy and I remember the radiographer saying to me, radiographer, radiologist, I remember the person doing the scan saying to me if you've been ill and I was like oh yeah I've had a bit of a cold you know and obviously she was looking at it and seeing inflamed lymph nodes I know now and I hadn't been ill at all I was just like yeah I've been a bit under the weather and yeah so I went away and left the breast clinic went to Glastonbury and 7th July a little bit before noon I was taken into a room with a surgeon with a very nice, kind face and a big bow tie. And he said to me, Ms. Purkiss, there's no easy way to say this. You've got breast cancer. And yeah, everything changed in that moment, as you know, like everything just gets flipped on its head. just, even when I'd been asked to come back to the hospital, I was like, oh, it'll just be for more tests. It won't be bad news. So yeah, I started treatment. pretty quickly, I think I was in for a mastectomy like three weeks later.

You had a full mastectomy, both sides?

Just my right side, yeah. So, I mean that was a bit of a headache. It's a story for a different time. But yeah, I had a nipple sparing mastectomy on my right hand side and then started chemotherapy a bit later and I had radiotherapy as well. And I'm... lucky in many ways because I had triple negative breast cancer, which means that I didn't have to have any hormone replacement therapy because my breast cancer wasn't hormone responsive. Yeah, which is great because I know like loads of people really struggle with the side effects of those hormone replacement things.

It's like hearing my own life reflected back to me when you talk about the diagnosis period anyway, because I had also that. Mine was 99 % it's not breast cancer, which was correct.

Yeah.

Statistically, they didn't actually make a mistake. It's just that sometimes you are that 1 % or that 5%. But I also had the same thing as you where I was really blasé about it because even though in my case, my grandmother had had breast cancer when she was in her 30s and I knew that. So I knew I was more at risk. But because I'd had, I think by that point three or maybe even four different medical professionals say to me, it's 99%, it's nothing. By then when I went back for that appointment, I was like, oh, it's not cancer. And then you get taken into the room and then it is there's breast cancer. And theres a breast care nurse.
Yeah, there's breast care nurse. And that's when you know. In some ways it's nice to be protected from that fear.

Yeah.

After that everything changes, of course.

Totally.

How has been your experience of having triple negative breast cancer? as we know, there are... fewer treatments that when you come off your chemotherapy and your radiotherapy, you don't then necessarily get put on a drug. How's been your experience with that?

I think for the first, I remember my surgeon saying to me, if you get to five years with triple negative breast cancer, you're gonna be fine. And then he was like, but also there is a really high risk of it coming back in that first five years. And I think for that first five years I did live in... fear and there were lots of times when like I've got lumpy, I've got a lumpy boob. My remaining boob is lumpy. And there were lots of times when I'd be like, Oh my God, is that another lump or, you know, the classic, I've got pain, something doesn't feel right. I'm a person who gets coughs in the winter and they don't go away. So that's always been a bit of a thing as well. But once I got past that five years, I think I started to let go of some of that fear a little bit. I think it never really completely goes away. But yeah, like I do think I'm really lucky that I haven't had to be on those treatments for a long time, but it is a bit of a double-edged sword.

Yeah. And you are now amazingly approaching 10 years. So we're just a couple of months off your 10 year anniversary. How does that feel?

Mad. It feels like it was a million years ago and also like it was yesterday. Yeah, it's, it is a weird thing to be hitting this 10 year mark. I feel so lucky and so grateful to be happy and healthy and I don't know if I'd use the word thriving but I suppose yeah I just feel very very lucky and very grateful because I know so many people haven't been as lucky as I am.

How are you now physically?

I think physically I am probably the strongest I've been since before my diagnosis. It's taken a really really long time to get here. Now I'm like at the gym, doing strength training. I'm swimming two miles in September. What an idiot.

Yes I saw you're doing the serpentine swim. Fantastic

Yeah. And yeah, like I go on long walks a lot. Like my husband and I will just go and smash out 13 miles on a Saturday just because we can. Yeah, so I really do feel strong and healthy most of the time.

Fantastic. Well, I mean, 10 years, it's incredible. Yeah. It's something to be celebrated for sure.

Yeah. You've worked with the Breast Cancer Awareness Charity Coppafeel a lot over the years and that's how I met you many years ago. Particularly there's a focus on raising awareness of breast cancer in younger people. Why was that important to you?

Because I had that feeling that there was no way I could get breast cancer when in fact I absolutely could and absolutely did. I wanted to make sure that nobody else found themselves in a situation where they found a lump, didn't have a parent to full name them and tell them to go to the doctors and just put it off and didn't go. And you and I both know stories of a lot of people that's happened to or people who've been gaslit by doctors or whatever, not gaslit, that's probably unfair because of the statistics, have not been taken as seriously by doctors as I was. And yeah, like breast cancer can and does happen to young people. So it was really important to me to talk about that and to spread that awareness. And Coppafeel was just, I just found them at the perfect time, I think. Finding people like you and the other people we know and connected to. And you know, we were both at that event for Kris Hallenga who died last year. we were both at that event and it was just so amazing seeing so many people that I love, you know, in that space. And yeah, I always say that Coppafeel saved my life in the sense of giving me a reason for my experience.

Well, that's exactly what I was going to ask you about next. So one of the areas I'd love to explore with you is mental health. Um and you've been very open on social media and elsewhere about suffering from depression both before and after your diagnosis.

Yeah.

How was your mental health affected by breast cancer?

I think because breast cancer affects everything, for me, my mental health, everything just takes a bit of battering, I guess, and my mental health really took a battering. I'm a person who likes to have control over things. And that complete lack of control that comes when you get a breast cancer diagnosis and you find, well, any kind of cancer diagnosis, I think, and you find yourself on this carousel of treatments and experiences and you can't really get off it, you can't do anything about it until you're told that you can get off. That lack of control really impacted me a lot. My fear. really impacted my mental health, fear of what was going to happen, was I going to survive, was I going to hit 10 years. And I guess I'm a person who likes clarity and likes answers, and there aren't many answers and there isn't much clarity. And I found that really... discombobulating for want of a better word. I just felt really off kilter and that really impacted my mental health.

Yeah. You actually published a memoir in 2019 called Life, Lemons and Melons, which was a beautiful, gorgeously written, honest account of having both breast cancer and depression. I think it was even more focused on the mental health side than it was on the breast cancer side. But you've later said that it was too soon for you to have written a book about your experience. Why was that?

I think it just everything was still so raw. And so I wrote a blog throughout my entire treatment and won an award, which was great and feels very weird to say. And I wanted to share the experience of navigating these two things at the same time. And I wanted it to be. funny and realistic because life is funny and even you know some of the stories I think of around my cancer experience are funny and actually depression when like my depression anyway when I break it down it's ridiculous like the things I say to myself are so like when you remove the emotion the things I say to myself are actually kind of comical because they're just so unrealistic and wild and whatever.

Do you mean like self hatred kind of thoughts, know, saying bad things to yourself that you wouldn't say to a friend.

Totally, yeah. And they're often just not based in fact either, right? So I'll say things to myself and think things and it's just not reality. I think that's kind of the crux of it. But yeah, I wanted to write the book because I wanted to share what it was like to experience those two things alongside each other. But I think in actual fact, I just wasn't well enough. I was still too in it.

Mentally, you mean?

Yeah, yeah. I was still very much in, because I wrote it, I finished writing it before I'd even finished having surgeries. So I think I nine surgeries over about three years. And the last two, I think, came after I'd finished the book. Yeah, and I think I was just too in it. Couldn't see it clearly. And in terms of when I could see it better and when I... like when I might have been better to write about it, I think just more time needed to have passed. And they talk about this a lot because I do a lot of work with like supporting people who tell their stories for charities or whatever. And, you know, I always say, I think the people who are still in the experience have a very different experience and need very different care and support than the people who are a little bit further down the line. That's not to say that the people further down the line. don't need that care and support. It just is on a different, it's a different way of managing it, I guess. And I think looking at the Alice who wrote that book, she needed a lot more care and support than she gave herself. Maybe she didn't have the tools. Maybe I didn't have the tools then. I think I've got them now. So maybe now would be, you know, it would have been a better time for me to do it.

For anyone who hasn't read it, what is Life, Lemons and Melons about? Can you just tell us a little bit about the book?

Yeah, so Life Lemons and Melons, it's kind of just about what it's like being a 26 year old who struggles with their mental health in various different ways and then gets this whirlwind cancer diagnosis. Like someone who has an explosion in their lives, I guess. Like everything blew up in that moment when I got that diagnosis. And I wanted to write about You know, lots of, I think there's a bit of a perception that when you get a cancer diagnosis, you immediately stop sweating the small stuff in inverted commas and suddenly you're very hashtag grateful all the time. And I think that's true to an extent, but also like that didn't get rid of the fact that I had a clinical condition. like I was concentrating on surviving for sure, but that didn't take away the critical voice in my. head that said shitty things to me. Sorry, it didn't take away that voice that said negative things to me or impacts my mood. Some days I wake up and I'm just incredibly sad for no reason. And that's the thing I think I saw somebody, maybe it was Matt Haig wrote that on Instagram the other day. He said depression is sadness without a reason.

Absolutely, yeah and I think One of the things that I thought about a lot and felt grateful for is the fact that I've experienced small, about periods of depression caused by things, always been caused by things. So caused by breast cancer, caused by other things, relationships or whatever. But I don't think I've ever experienced depression caused by nothing, clinical depression that comes from within. And I think that's one of the things that your book kind of showed me was Like, and also just from your Instagram posts and the things you said over the years, just kind of understanding that you suffer from a depression that is a numbness and a sadness that comes from, is not caused, it's not for a reason. Would you be comfortable telling us a little bit about where that started before breast cancer and what your experience has been?

Yeah, sure.
So it's really interesting because I think I've had depression for most of my adult life, if not all of my adult life. And I've been with Chris, my husband, since we were 17. So we reached a point where we were managing my mental health together. I think he realised very quickly that I maybe had mental health struggles. And he, yeah, we just got really good at supporting me through it. We reached a point probably about 10 months before I was diagnosed where my periods of sadness were getting deeper and longer. And we both kind of sat down together like, I can't handle this on my own anymore. So I went to the GP and yeah, they said, yeah, you've got depression, definitely, no doubt. And I had a course of CBT. So that's cognitive behavioural therapy, which like teaches you tips and tricks and tools for managing your mental health and like stopping those negative thoughts from snowballing because often for me, that's the biggest problem. Like I have a thought, I have another thought and it'll just keep going. But yeah, so I was given six sessions of cognitive behavioural therapy and it was actually between the fifth and the sixth that I got my diagnosis. So I vividly remember going in to see my therapist, a guy called Steve who was brilliant and he said to me, so how have you been since your last session? I was like, well Steve, I've just been diagnosed with breast cancer. It was a shock for him and that was the only time in our time working together that I saw any kind of feeling in his face because I'm sure he was prepared for me to say, I've been really sad, I haven't got out of bed, whatever. But yeah, so I'd kind of managed my mental health. on my own for a long time and then I had CBT and I was actually on medication as well when I got my breast cancer diagnosis. And I'm so glad that I'd done that work before and that I'd started that work before because I think if I hadn't, my mental health would have been even more treacherous, let's say, than if I had.

Was there any part of you when you got the physical diagnosis of breast cancer, a physical illness versus your pre-existing mental illness. Was there any part of you that experienced relief that you had something that was like, something, I don't wanna say tangible, because mental health is so tangible to you, but cancer is so much more easy to understand for the outsider sometimes.

It was so much easier for me to say I've got breast cancer than it was for me to say I live with depression and I have been depressed and I have experienced depression. So I don't know if there was a sense of relief as such, but there was almost a like, ah, okay. And there's a reason for it as well, right? So it goes back to what we were saying before. no reason for me to have mental health difficulties necessarily. I'm not saying there was a reason for me to get breast cancer, but it was a thing. And yeah, the two felt very different. And I think that's also why I wanted to write the book because I wanted to explore the differences and the nuance of the two things separately and together.

The reason I said about the relief is because that was something I was, that's. an experience that I had. was like, I was going through some stuff in my life at that point, not depression, but I was going through some things. And for me, the breast cancer diagnosis was almost like, okay, like I've got a thing that I have to focus on now and the doctors are gonna treat me and it's like, yeah, it's almost like everyone else was gonna deal with it for me because I was gonna get all the or the medical treatment.

That's so true. And I think there was also a part of me that was like, okay, well, now you've got a reason to be depressed. You are fighting for your life. I hate that terminology, yeah, it was like, okay, you've got a reason to be sad now.

Yeah. One of the things that has really stood out to me over the years is the way we talk about and talk to people with... mental illness versus physical illness. If you say you've got cancer, people are like, gasp, and if you say you have depression, people have such different feelings about it.
Why do you think that is?

I think it goes back to that like tangibility thing. you know, you use that word even though you're a bit apprehensive about it. And I think you're right. Cancer is tangible to people because there's that thing and you're right in the depression or anxiety or whatever other mental health experiences you might be having. They're very tangible to you, but not necessarily to other people. And there's lots of very obvious symptoms of being a person who has cancer. That's not to say that you can't have cancer and not look like a person who has cancer, but it's that classic thing of when I had no hair, no eyebrows, no eyelashes, no nasal hair, my nose was running all the time, it was very obvious that I had cancer, you know?
And I would even go to work when I was incredibly depressed and people had no idea, yeah. And it would be when I came home and shut the door that I would like crumble. It's much, I guess it's much easier to mask mental health stuff and muddle through and be very high functioning than it is. to mask a very physical illness that very much needs aggressive treatment. And you know, I've said before, my depression was as much of a risk to my life as the cancer was. But just in a very different way.

Yeah. Please tell me if this is too raw. But I think you, it's been a long time since I read the book, but I think you wrote in there about having suicidal thoughts, but never. getting to the point where you actually were ever planning to act on it. How did it feel having a physical illness that threatened to kill you and therefore you wanted to stay alive, but also having these conflicting thoughts of I might not want to be alive?

Yeah. It is... I want to say like a clusterfuck. You should say that. Yeah, it's a clusterfuck, it's a headfuck. And it is one of those situations, and one of the things that I really struggled with after I'd finished treatment as well was I'm having these thoughts, or I have historically had these thoughts about my life not being good enough, about me not being good enough, about me not deserving to live. And so much energy and attention and money has been spent on me being alive. And I think also because of the way my depression sort of manifests itself in that very negative self-talk, I was like, dude, you're just not grateful enough. You're letting other people down by having these thoughts and feelings. You know people who've died, know people who are living with secondary breast cancer and are working really hard to maintain a good quality of life and live as well as they can. And here you are being miserable for no reason. I used to get really cross with myself. And sometimes I still do, you know. But there's a quote that I love that I kind of live by now. And it's that an emotion passes through you in about 30 to 60 seconds, but it's the stories we tell ourselves about that emotion that linger. And that's really changed the way I think about my experiences of breast cancer and of depression and how the two splurge together in a big old mess.

How is your mental health now?

Mostly good, I think. like I've learned a lot of ways to manage it and I take care of myself better than I ever have done, which goes back to what I was saying before about feeling stronger than ever. Yeah, I mean, that's not to say that there aren't times when it's difficult and times when I feel sad without reason. And then, you know, also life, sometimes life makes me feel depressed too, slightly different kettle of fish. But yeah, generally I think I figured out how to live with what I have.

Yeah. Are there any tools you can share with people in terms of coping with depression specifically after a breast cancer diagnosis?

I think the biggest thing for me was talking to people and being honest. being honest with myself as much as anything, but also being honest with other people. Because when you've been through something like breast cancer, when you're experiencing depression or anxiety or any other mental health conditions, it can feel so isolating and you can feel so on your own. But actually there's nearly always somebody who wants to help. So yeah, I would advocate finding a person to talk to, whether it's a professional, whether it's a friend, whether it's something like Breast Cancer Now do, someone like me, don't they, which is the peer support service. Having that space where you can be really honest with someone. I think that's the best thing about therapy as well, is you can say whatever you want and no one is gonna react. No one's gonna be scared or worried or whatever.
So yeah, talking to people. I would go back to writing as well. Even though I say that the book wasn't the right thing, writing the book itself was incredibly cathartic and made a lot of sense to me. Yeah, what else? Movement, guess, swimming kind of taps into that, but any kind of movement I just think is so good for your brain and your body and the relationship the two have. So even if it's just like going out for a walk, getting outside, just not being in the house or wherever you're experiencing the impact of your treatment, getting away from that for a little bit can be hugely beneficial. I meditate as well. I'm one of those people. Just anything that you can do to break the cycles that you are experiencing that might be difficult for you. Yeah, and I do think being in nature. is a really big one.

That's a proven one.

Right. And there's a thing as well. So green spaces, so being outside in green spaces is good for you to a certain percentage, whatever. But even better than that is blue spaces. So that's water and things like that. So if you've got access to any kind of water space, whether it's a river, whether it's the sea, whether it's a lake, whatever, blue space is really, really good for your mental health.

I am a massive advocate of therapy. I just think everyone should have therapy, to be honest. If you can access it, and that's another thing because it's not that accessible for everyone. I'm very lucky. have a great therapist. I've had several brilliant therapists through the years.
Writing has always been an outlet for me. And I think maybe that's part of the reason why I'm like, oh, it was too soon for the book. Like maybe it was just a bit too personal, you know? Maybe it was just a bit too close to the bone and maybe I should have kept it to myself. yeah, writing has always been a tool for exploring things. I don't make sense of things if I don't write them down, I have to. And any creativity actually, and that's really formed a huge basis of my work. But doing anything, like I'm teaching myself to crochet at the moment. I am so bad at crocheting. I crocheted my mum a hat a couple of months ago and honestly it made, it makes us all look like mushrooms. But that practice of trying something new and failing and not being good at it, but it doesn't matter. That is hugely powerful for my mental health. I'm also a swimmer. I swim a lot in water. The colder the better. Arguably.

Yeah. So for our listeners, you are the person who when I'm cozied up in the winter in all my layers of clothing with the heating on, I will one day open Instagram and Alice has posted a picture of saying, oh, it was minus eight in the water today or something like that. And you're just there was like a red face, but this glowing red face post swim. with only a swimming costume on. We're not talking wetsuits here. No, just a swimming cossie and a bobble hat usually. Yeah, I love a cold swim and that has been instrumental for me in my recovery from breast cancer and managing my mental health as well.

Is it just the endorphins? Because there is a, I think there is a proven thing, isn't there, that cold swimming can help your mental health?

Yeah, yeah, there's loads of science about it. I think it's, yeah, I think you're right. It's to do with the endorphins. But the thing for me, I think that has been really instrumental is, you know, when I got my breast cancer diagnosis, I lost all faith and trust in my body. And there's something amazing about putting myself in increasingly cold water as the season rolls on and being able to tolerate it. It's just being able to do something. there have been so many times when I haven't been able to do things as a result of my cancer and yeah, getting in cold water, I can do that. And I remember when, so I started cold water swimming about seven years ago. think this is my seventh or eighth winter I've swum through. And when I started swimming, I swam at Brockwell lido through the winter and I was flat on my right-hand side because of complications with my surgery. And I remember being in the changing room at Brockwell Lido with all sorts of women of all sorts of different shapes and sizes and life experiences. And everybody's very casual and very free in there, which is just amazing. And I love it. And I remember looking at all sorts of different people and thinking they're all right in their bodies. Maybe I can be all right in my body, even as it is now, even I had like a crater for my boob for a long time. was like really, because they were gonna reconstruct it. It was very ugly and yeah, just not very nice. And I was like, I'm in this space where people are accepting themselves, why can't I?

Yeah, I think there's an extreme pride in your body that comes after breast cancer or during breast cancer when your body can do stuff. The mind is one thing and with swimming and with sports, and exercise, it's all mind and body. But for me, there's a thing about my body when my body can do a certain thing. And I'm so proud in a way that I think if you've never experienced any difficulty with your body, you're completely able bodied and you've never had any problems that you might not appreciate as much. But like being able to do that swim, just makes you feel so great.

Yeah, I think you're right its just there's such a pride in what your body can do and reminding yourself of that. You sometimes I'm really hard on my body and sometimes, I'm really, again, negative towards it. But then I'm like, actually, do you know what? Your body's amazing. It pumps blood without you even thinking about it. Your lungs are expanding and contracting all the time. You don't have to do any of that. It's just doing it. That's amazing. My body can tolerate being in three degree water. Pretty cool.

You sound like you have a really amazing relationship with your husband, Chris. And it sounds like you can also talk to him about things, honestly. But a lot of people find it harder to talk to the person closest to them, particularly when you're worrying about something like breast cancer, because they know the impact of that on the person. So for example, I sometimes don't want to worry my own mom and dad or my husband or my step-kids about the things, because I know those things worry them too. None of us want my breast cancer to worsen. What would you say to someone who struggles to talk to someone close to them?

I think that's when community is really important. My experience has been that if you have something that is on your mind, that is playing on your mind, and you can find another person with a cancer experience, they will say, oh yeah, I've thought that, I've wondered that, or that's crossed my mind. there's something really powerful in that connection, just somebody saying, oh yeah, I get you, I see what you're saying, and not being worried about it from their own perspective. So I do think finding other people who have similar experiences, don't have to be the same, you know, like one of my closest pals is somebody who had Hodgkin's lymphoma. And our experiences of cancer were very, very different, but... I can say to him, oh, I've had this thought and he can be like, yeah, yeah, yeah, I know exactly what you mean. And that's really powerful. So yeah, trying to find a connection with somebody who you get on with like not just because of cancer as well, right? So Toby and I both love the theatre and we both love cats and you know, that kind of thing. And then we've also got this additional thing of the cancer connection.

A few years ago, you pivoted your career to becoming a helping people with lots of different work and life issues like building confidence, developing resilience, and working towards career progression. With a particular focus on life post-cancer, what are the tools you might offer to your clients that can help them to get on with life after a diagnosis?

I think that's such a good question. So when you're diagnosed with cancer, everything changes and I... think it's really easy to lose your sense of self. And a lot of the coaching that I do with people who have experienced cancer is about like kind of recalibrating after that diagnosis. So we might work on looking at what your values are. Because your values, if you know your values, they're a really good tool for helping you make decisions, figure out your place in the world. decide what you're gonna do next, know, all of that kind of stuff. So do a lot of work around values. Do a lot of work around identifying your strengths as well, because I think when you've lived in the cancer world for that intense period of treatment, however long that might be for you, you can lose sight of who you are beyond that. I know I certainly had no idea who I was after treatment. So do a lot of work around strengths. Even things like having, again, it kind of goes back to having that external person to check in with. So, you know, a coach isn't a therapist. The two can go together very nicely. But having a coach can help you explore whatever's coming up for you in relation to your cancer experience or in relation to who the hell am I now? So yeah, think coaching is a really useful tool. I mean, I would say that, right? I think coaching's a really useful tool for people who have been through any kind of trauma or life-changing situation, because it is just that recalibration, checking back in with who you are, where you are, where you wanna go, and figuring that out, and a coach is a guide to help you do that.

What is the difference between coaching and therapy, and how does a person know whether they need coaching or therapy?

So I always say that when I'm coaching with somebody, they're in the driving seat. I'm just there in the passenger seat, doing a bit of the navigating, maybe playing with the music. I'm just there as kind of their guide. Coaching is a lot more, it's like practical steps that you take, practical tips, things to do. So at the start of a coaching session, We'll sit down, we'll set a goal for our time together, something that the client wants to explore, and then we'll do it. And there's a quote that I love which says, the brain that has the problem has the solution, and often it's the best one. And that's what coaching is about. It's about trying to, my role as a coach is to ask questions, to try and raise a person's awareness, and then they can see what responsibilities they have, like what they can manage. and then they can figure out what they can change. What would you say to someone who's going back to work or is trying to change, pivot their career after dealing with a big life event such as a cancer diagnosis or perhaps they're even living with secondary breast cancer? We know ourselves better than we give ourselves credit for. And I think it goes back to that quote as well, right? The brain that has the problem has the solution and often it's the best one. It's about figuring out what your solution is and finding ways to help you do that, whether it's coaching, whether it's therapy, whether it's writing, whether it's screaming into a pillow until you get some kind of clarity, know, whether it's swimming, dancing, whatever, you know what you need. And it's just about tapping into that intuition. And if you need someone to help you do that, find that person. Like ask yourself, what's my head saying? What's my heart saying? What is my gut saying? Is any one of them feeling particularly strongly? What would happen if I listened to that thing that is feeling particularly strongly? And just spending some time checking in with those different voices and seeing what they're telling you can help you get a bit more clarity. You worked with Coppafeel to form a set of guidelines that media organisations like newspapers and websites can use when they're writing about cancer. And that included tips like avoiding that classic line that people often write, which is so-and-so lost their battle with breast cancer.

Why was it necessary to create these guidelines?

So I'm a real language nerd. love words and I really like thinking about the etymology of words, like where they've come from. Because language changes all the time, I think there's a lot of habits that people slip into, especially when talking about things that are difficult or traumatic or hard that are cliches and are just stock phrases that we use because we don't know how else to say it. And that's very, very true with cancer. And Nat from Coppafeel, she's the CEO, she approached me and she said, I want to do a project about the language we use around cancer, particularly breast cancer, particularly in the younger communities. What do you think? And I was like, yes, sounds great, happy to help. And then she was like, just create a project, just go for it. So I was like, how about we create a set of media guidelines that give an outline on the kind of preferred language? And I said to her, I've got really clear thoughts about what I think we should do, but to make this really effective, I think we should bring in some other voices. So we brought in, we did some, we did a survey, we did some focus groups, we did some one-to-one interviews, and then I collated all of that data and turned it into this language guidelines. And I think it's important because, you know, language can alienate people, it can connect people. And when we're talking about cancer, you know, again, everybody's experience is different and everybody feels differently, but if there is something that is continually unsettling or unpleasant for people to be on the receiving end of, then it's important that we change that. Like our approach is to, racist language have changed over time. There's words that used to be used that aren't now. Homophobic language, you know, and it's just about, again, it's that kind of recalibration of the way we talk about things. Do we need to do it the way we've always done it? or is there a better way to do it? Can you give us some examples of the stuff we might find in those guidelines? Yeah, so the guidelines basically break down the research and give percentages. So I can't remember the percentages off the top of my head, but it's like X percent of people feel alienated when they hear the word battle or fight or. like army based language. Bravery. Yeah, exactly. And it's really interesting because the army based language approach to cancer came from an American president who was losing the Vietnam War. So if you're good at your American history, you'll know. But the Americans weren't doing very well in Vietnam and he wanted to flip the script and focus on a war on cancer that he felt like he could win. So that's where that like kind of military language comes from. And that's obviously what in the seventies and we're still using that same language now. So yeah, I find it really fascinating that that's like why we do what we do and why we speak about cancer the way that we do. But it is actually bothersome for a lot of people. It makes them feel alienated. So there's a little bit in there about. the stats and statistics of the data, then there's recommendations for language that you can use. There's stuff about how to make sure that your language around breast cancer is as inclusive as possible. So. Well, let's just go back to talking about the war, the battle language. What is the potential harm in that? I think the biggest one, and this is one that I hear from people a lot and I heard from people a lot in the research. Battle suggests that you've got some kind of control of the situation. And if you lose your battle, it's because you didn't fight hard enough. And that is a very negative way of looking at a disease which is like you've had no control over it. And so I think that's what people find really alienating. It's like. when we add military language to something, I was going to say it makes us feel like we're active participants in it, which we are to a certain extent, but also there's a lot that's outside our control when it comes to cancer. So yeah, I think the damage to that is, the damage that that kind of language can do is it can alienate people, it can make people feel concerned or worried or, you know, whatever. There's also, you know, the fear-mongering element as well. So if we're using words like that, it's inherently negative. And that can put people off going to get help if they find a lump going to seek, going to a GP or whatever. One of the words that I think features in those guidelines is inspirational. Oh yeah. And people very, very well-meaningly say to cancer survivors or cancer havers like me, oh, you're inspirational. Yeah. You know, on first listen, there's nothing wrong with that. I think that's a compliment that people are trying to pay me. What is the potential harm in that? I think the potential harm in that is the pressure to live up to that expectation. So if somebody says, oh, you're really inspirational and you're like, I'm not, I'm just going about my daily business. I'm just trying to exist in this world. It's about... does that allow you the space that you need to talk about your experiences as fully as you want to? If somebody says to you, or you're really inspirational, do you then have the space to say, well yeah, I might be, but also there's days where I cry so much, there's like a river of snot coming out my nose, you know? And it's just very one dimensional, I think. And it doesn't allow, again, for nuance, it doesn't allow for context, it doesn't allow for. just space for anything else. It's just like, okay, cool. That's that one thing pinned on me and that's what I have to be now. I know that Chris Helenga from Copperfield used to say, she used to be called inspiring all the time. She lived with breast cancer for 15 years. What she used to say was that, what have I inspired you to do? So, cause people will say you're really, really inspiring, but actually. That should mean in the technical sense of the word, the literal sense of the word should mean that you've inspired them to do something. Some kind of action. Yeah. So she would say, okay, it's fine if you say you're inspiring because you've inspired me to do cold water swimming, or you've inspired me to start a charity, or you've inspired me to be more honest, but don't just call me inspiring just for the sake of it. Yeah. If that makes sense. I hope I've not done her a disservice in No, I don't think you've done her a disservice at all. think that's really, And we're not saying that these words are offensive. There's really nothing wrong with it. It's not an insult to say to someone, you're inspirational and you're inspiring. It's very well-meaning. It's just that sometimes it's worth reading these guidelines to see if you're outside of the cancer world, what the words that you're saying might, particularly the media, think, how they can write it better. I do think people are scared of talking about cancer, even now, you know, like there's still, it is still the big C and it is still, it can be really, really scary for a lot of people. And I think anything we can do to remove some of that fear is just gonna make people feel more confident about going to the doctor or asking for help if they need it because their mental health is struggling because they're going through cancer. What about the dreaded word journey? cancer journey. So some people do relate to that and sometimes I'm like, I don't really know what else to call it. But my dad always said that he saw my treatment as more of a trip because it was shorter and there was a lot more drugs involved. But yeah, I think the word cancer journey, again, it's just overused, but for some people it really works. And that's the thing as well in the media guidelines. It's very clear. Like if you're working with somebody and they use the word journey, that's fine for them. But like, if they use the word battle, that's also fine for them. But if there's somebody who doesn't use that word, don't like put it on them. You know, if somebody talks about their experience of cancer, don't then call it their cancer battle, because that's obviously not language that they respond well to or they feel comfortable with. Talking about words and phrases to use and not to use during cancer reminds me that in your book, Life, Lemons and Melons, you did, I think, write a list of These are the things that sometimes people say to you when you have cancer. Can you remember any of those? Or the funniest ones or the ones to avoid? Oh, it's always things like my mum's sister's best friend's dog's owner had cancer and they died. Things like that. Never helpful. yeah. And things like, have you tried kale or have you tried? Turmeric, aww. That's so funny that you knew that that was what I was gonna say next. Yes, I've tried all of the things that my medical team have told me to try. Yeah, like well-meaning things like you're so brave, you're so inspirational. Again, it's just a bit like, am I or am I just a human doing what I need to do to get by? Yeah, and I think that's the thing about the cancer experience as well. It's very much something that's happened to you and I think I liked to be complimented because someone's read my book and enjoyed it. Or I like to be complimented because someone's listened to this podcast and said, you you did a good job on that. But complimenting me on my cancer is difficult because it's something that happened to me. And the reason I'm still here and still alive is because of the drugs that were researched and. developed and given to me by an amazing medical team who trained to be doctors and nurses and stuff. So it's like, you know, I'm not alive because just because of me, of course it's partly because of me. And I think that's where words like inspiring and brave can be difficult as well because people might feel like if they then lose control of that. And also in terms of a mental health way. So I think I've been called inspiring because I've dealt with breast cancer with a smile and with humor. and people used to read my blog that I wrote 10, 12 years ago and say, oh, you're so inspiring because they thought that I was dealing with it well. But then where does that leave you when you're not dealing with it well? And then is that when those difficult words, harsh words against yourself start to come in, you start to self-criticize because you're like, I was being inspiring, but I'm no longer having a good day and I'm no longer dealing with this, what do I do now? Exactly, it almost pigeonholes you into one type of experience. So you've got to show up, you've got to be happy all the time, you've got to be super positive, can lead to really toxic positivity rather than allowing the full spectrum of what it is to be a person who has cancer to be honest about. Again, just emphasizing, there's not. anything wrong with the words like bravery and battle, know, that's absolutely fine for some people. But if you wanted to avoid those words and try and broaden your vocabulary a little bit, are there any words or phrases that are just particularly good go-tos for someone talking to someone or about someone who has breast cancer? I think this kind of goes back to honesty and authenticity, you know, saying to people, I love how honest you've been about this. I'm really grateful for how honest you've been about your experience. Thank you for sharing that with me. And I think, know, remembering that what you said that cancer is something that happened to you. Asking questions, I think, is a really great way to approach this kind of thing rather than putting words on people. like, you know, I know that you love to swim. I might say to you, oh, so how's this affecting your swimming? How are you like feeling about swimming with everything else that's going on? And just remembering that they're a person before they're a cancer patient or a person with cancer and being led by them. Use the language that they use, reflect that back to them. And yeah, just like if you admire something about them, tell them. But I think specifics are helpful. Yeah. And I think remember that they have other interests outside of breast cancer. you could go, if you're going over to a friend's house, to take them some food or whatever, you could say, do you want to talk about your breast cancer tonight? Or do you want to focus on other stuff? Should we just watch TV? Do you wanna talk about your other interests and leave that up to them to decide? I think as a person who's got cancer, who's going through cancer treatment, there's something also about being comfortable to say, do you know what, I don't wanna talk about cancer tonight. Can we just take it off the table? Can we talk about... the weather, can we talk about the Olympics, whatever. And just being really honest and being really clear, because I think this is the other thing. People aren't mind readers. Absolutely. No one is a mind reader. And we're all doing the best we can. I think if we can try and remember that and be really honest with each other and say, like, I know you're doing the best you can, but I actually don't really respond particularly well to that word. It makes me feel weird or. I'd prefer to talk about this or whatever. And asking for the things you need, just really clear communication around cancer I think is just so important. And that's partly why the language guidelines exist as well. And just going back to someone with mental health issues, if you, so what I've heard in the past is that if you say how are you to a friend but you know that they might be suffering, you could then say but how are you really? Yeah. Because often someone's first response will be I'm fine because they don't think you really want to know. Yeah. as a person who has suffered extensively with clinical depression, what's your thoughts on that? I think it's a really helpful thing. And because that then says to me, that person isn't just asking as like a cursory thing, they're asking because they wanna know. And actually if you need to talk to somebody and they offer you that open door, it can be really helpful to go through it. like if you want to. And we were saying before about finding people to talk to about your mental health, can be really, really helpful. And that person asking you that question twice, lets you know that they're a safe space and that they really care and that they want to support you. And you can still say, oh, you know, I'm fine if you don't wanna talk about it. Or you can say, oh, you know, not great, but that's okay, let's move on. But it is always really... I think it's a really generous thing to do when somebody says, yeah, but how are you really? I think it's really, I think that's a really generous approach to checking in on a panel. And what I also find helpful, if I'm the person who wants to talk about me and my own issues, I will sometimes send a text as like a heads up. I'd even like might do that to my husband if I'm on the way home and say, I'm not feeling great today and I'd actually really like to talk. to you about it, can we have a conversation later? And so he's then got the heads up that I'm in a certain head space and we can have that chat and he'll know to approach it. Whereas it can be very difficult as a non-confrontational talker to be there in person. Sometimes it's just easier to send a text or an email or a written communication. And there's also something as well about... getting out and walking side by side, because it's much easier to talk to somebody about what's going on for you if you're not looking them square in the face. I think any kind of way that you can facilitate clear communication is so important with both mental health and cancer stuff. And it does, you know, sometimes that takes a lot of work. Sometimes that takes you as the person who's experiencing those things to step out of your comfort zone and say, I need help with this, or I'm feeling this, or I want this from you. But if you can do that. it's better for everyone because people aren't mind readers. But if we tell them what they want, they're often willing to help. Well, we'll put the link to those brilliant Copperfield guidelines in the show notes. Because anyone can access those, whether you're from the media or you're just a person wanting to help a friend. Yeah. You touched on it before, but how can we make the language around cancer and breast cancer more inclusive? Yeah. So I think in terms of inclusive language, you know, it's just Not using a gender if you don't have to. And you know, I'm not saying necessarily talking about chest feeding or whatever. If that works for some people, then amazing. Like I don't see a problem with that. If that makes them feel empowered, brilliant. But like, if you don't have to, if we can talk about chest tissue instead of breasts, why wouldn't we? If it makes more people, male, female, non-binary, whatever, if it makes them feel included, then. why wouldn't we do that if it raises awareness for them so that they can get checked out if they find something that's unusual. It's just remembering that the language that we use might not necessarily apply to everyone. It doesn't necessarily apply to all groups of people and tailoring that accordingly. And there's lots of tips in there about how to write as accessibly as possible. There's a subtle difference isn't there between when we're checking ourselves and we're checking our bodies, there's a subtle difference between looking for signs and symptoms and being aware of. Could you explain what you mean by that? Yeah, when, I think if you say like you check your chest to look for cancer, that feels inherently negative. Like, oh God, I'm looking for cancer. Whereas if you say, I'm checking my chest to find out what's normal for me so that I notice if there's anything different, so that I'm aware, so that I'm empowered to then take action. It's just, again, it's just that switching up the language in that way. just allows, it allows more people to be involved rather than excluded out of fear. Checking your boobs, checking your chest is never about looking for cancer. It's about knowing what's normal for you. when we make that mental switch, it becomes more like a self-care activity rather than a big, scary, terrifying thing. Yeah, it's just whatever you feel comfortable with, but it's just getting used to checking your body. And we always like to talk at Breast Cancer Now about not just knowing your body in terms of knowing what's normal in terms of. finding breast cancer in the first place or not finding breast cancer, because most people who come to this podcast will already be affected by breast cancer in some way. But we also like to talk about knowing your body and knowing the signs and symptoms of secondary breast cancer. And that of course means being aware of any ongoing signs and symptoms that aren't normal for you, whether that's back pain, neck pain, shoulder pain. breathlessness, there was one that you mentioned earlier, coughs, persistent coughs, so you mentioned that you have a cough every winter, and that's normal for you, but maybe if that goes on for much longer, then you know that that's when you should get it checked out. Doesn't necessarily mean that it's anything, but it's a good one to get checked out. Yeah, absolutely, and I think when we start positioning this stuff as ways of looking after ourself, it just feels a little less scary. Yeah, if it feels less scary, we are more likely to take action on it. I'd like to finish with the question we're asking everyone on this podcast. Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live, but be supported to live well. What does living well mean to you? I think for me, living well is being content. I think happiness is very volatile. And I think, know, for me, living well is about not too many wild highs and as few low lows as possible. Yeah, and just feeling comfortable and authentic in myself. It's a simple life in a way. Yeah, yeah. I think that's something that cancer's definitely afforded me is that vision of just a simple life where I feel Pretty good, most of the time. Yeah. Where can people find out more about you, your writing, and your coaching services? So you can find my website at alismaypirkis.co.uk. I'm on Instagram as alismaypirkis, and I'm on Substack as alismaypirkis. The great thing about having an uncommon name is I can use it on all of the handles. But yeah, that's where you can find me. Amazing and we'll put all the links in the show notes and Alice, thank you so, so, so much. This has been incredible. Thank you for having me. You can find support and information on our website, BreastCancerNow.org and you can follow Breast Cancer Now on social media at Breast Cancer Now. All the links mentioned in this episode are listed in the show notes in your podcast app. Thank you for listening to the Breast Cancer Now podcast.