This podcast contains the personal stories, opinions and experiences of its speakers rather than those of Breast Cancer Now. I've just finished recording today's episode about secondary or incurable breast cancer with Laura Middleton-Hughes. And what came away from this conversation for me was how much hope can be had from a case like Laura's where she's been living with secondary breast cancer for nine years. And during that time, despite all the obvious difficulties of living with incurable cancer, the emphasis really has been on living and living well. But at the same time, she's really vulnerable and doesn't shy away from sharing the really hard, difficult, sad and scary moments of cancer. So if you have been diagnosed with secondary breast cancer or know someone who has, then hopefully you'll find something to relate to in this conversation. Now let's go to the episode. We're publishing this episode in Breast Cancer Awareness Month, when there's a special day dedicated to secondary or metastatic breast cancer. So today we're speaking to Laura Middleton-Hughes, founder of Secondary Sisters, an online community that supports people with all kinds of advanced cancers, including secondary breast cancer. Laura herself was diagnosed with breast cancer when she was just 25, and she found out it had spread when she was 28. At the time of recording, she's been living with stage four breast cancer for nine years. Laura, welcome to the podcast.

Thank you for having me.

So could you start by telling us what secondary breast cancer is?

Yeah. So secondary breast cancer, or in other words, metastatic, incurable. These are all describing the same thing, which is basically where the primary cancer site, in my case, it's breast, has actually then spread beyond that primary. So mine has gone to bones. Often the common place is the liver, lungs, brain or bones in breast cancer. But it isn't bone cancer, it is breast cancer cells within the bone. And once it's beyond your primary site, sadly in breast cancer it is incurable. So you are then on treatment, but it's not curative.

Thank you. That was a very clear explanation. I can tell you've done this before. So I'll talk to you a little bit about what happened with your secondary breast cancer diagnosis in a moment. But first I wanted to ask you what your life was like before you had that first diagnosis in 2014. What were you doing?

Going back a long way. So yeah, 2014 or end of 2013, because I found the lump at the very end. I was a hairdresser. I had my own business, loving life. I was just about to go off traveling to Australia for five weeks. I was with my now husband. We'd been together about four years. Just life was, you know, life was good. I was 25. I was going out a lot. I was having fun. Just really enjoying being a sort of young adult and life was just taking me in, you know, really amazing directions, things that I'd always wanted to do. So I would say it was a really good time, was a really happy time. And then, yeah, life did change very dramatically, but I think when you look back, it's, as I say, it's a very long time ago, so it feels like a completely different life away.

Yeah. And you said you found a lump towards the end of 2013 when you were 24, 25-ish.

Yeah, so I was 25. I was in Australia and I was in the shower one day and I think because I'd gone away, I was moving around a lot. I wasn't using one of those shower scrub things I'd use in a home. So was just using my hands and I just remember, yeah, one day rubbing my hand with some body wash around my body. I just came across a very small pea-sized lump in my left breast of which I think... you know, being 25, it didn't occur to me at all that could be anything serious. I did ask Brad at the time to have a little feel himself. And again, he was like, oh, it's really small, but we'll just keep an eye on it. And had no other, you know, no other symptoms or anything. I was quite tired, but I think it's just because I was doing a lot. I had a lot going on in my personal life and started, you know, I'd started my own career, et cetera. So yeah, I just put it all down to that.

And how did you come to find out that it was breast cancer? The lump while I was away was still there. So was there for another, I think, two, two and a half weeks. And I remember sitting in Hong Kong airport on the way home and Brad saying to me, I think we need to get it looked at. Maybe send your GP an email and just see if we can get an appointment booked in for when you get home. Had it not been for him, I probably would've left it because actually I didn't really think much of it. Yeah, booked an appointment, ended up going in, I think it was something like the 28th of January. And yeah, I got seen. They said, you know, they had a feel and it moved and it wasn't painful and they sort of said because of my age it's unlikely to be anything to worry about but thankfully my GP said I'm not a specialist and so I will refer you to going in just to make sure, like a second opinion. So I then was put on the two-week pathway referral, ended up at the hospital. Again, I think in my head I just thought, maybe it's a cyst, it might need to come out. At this point it had got quite a bit bigger. And I saw a consultant at the hospital and she did a very similar thing. She said, oh, I don't think it's going to be anything, but let's just do an ultrasound on it and a biopsy. So I was like, okay, fine. And it wasn't until I'd actually gone in and had the ultrasound and I'd spoken to one of the nurses and I said, why don't I have a mammogram? And she had said, because you're so young, your breasts are really dense. So I thought, okay, fine. I then went back into the waiting room, ready for my ultrasound, my biopsy. And then I got called through for a mammogram. And that's when my alarm bell started to, I was like, okay, why are they doing a mammogram? And then they did a second mammogram after. And I think that's the first time I suddenly thought they've seen something they're not happy with. Then I had a biopsy, which if anyone's had a biopsy, it's much more invasive than you think. I was literally expecting to go back to work that afternoon. I hadn't realized I might have to take a few days off work. And then they do, it was about, I think two weeks after that, that I got my results. So it was 24th of February, 2014 that they told me it was already a stage three, grade three breast cancer that had gone into my lymph nodes as well.

All of that sounds really familiar to me. It's unlikely to be anything, unlikely to be anything. We'll give you this just in case. Ultrasound, mammogram. And then for me it was, okay, we're to have to take you in for the biopsy.

And that was the shock bit for me. And then what you said about that biopsy being really invasive. I mean, it's a needle that they put through your breast. It's like a hole punch, isn't it?

Yeah, like a hole punch. Yeah. I don't want to scare anyone, but it's, I think it's just the shock of it all. It's you go into hospital thinking you've been, you've been told that it's unlikely to be breast cancer. You're really young and suddenly you're given a test that you weren't expecting and you have a little bit of anaesthetic and all of it combined makes you teary. And then you've got this fear that, God, they found something. or if it's breast cancer. I think that's it, sort of hadn't really even occurred. That word cancer hadn't until that point even crossed my mind because I knew no one of it at my age. You didn't hear it. Social media wasn't as big back then. You didn't hear of anyone at 25 with it. And I think that's, yeah, it just hadn't crossed my mind. So it was that worry of, okay, well, what have they seen? What could this be? And then obviously you left, you're left all for that wait and that is so difficult. Because also, because I didn't think it would be anything, I hadn't told anyone. So literally it was brand new. I did mention it to one of my best friends for like, I think two days before I got my results. And my sisters knew something was wrong. They didn't know why, but I said I'd be in hospital. But other than that, no one knew. And it was really hard because then you're literally breaking this news from scratch to people because I was like, I don't want to worry people if it's going to be nothing.

Yeah. That's always my thing is I never tell people that I've even got a test or that I'm expecting results. I wait until I hear and then I process everything myself and then I can tell other people. So what happened after that diagnosis? What did you have in terms of treatment, surgeries?

So I then had a full body scan because they wanted to check it wasn't elsewhere, which thankfully it wasn't. And within three weeks of my diagnosis, I was starting chemotherapy because it was HER2 positive and oestrogen positive, which makes it more aggressive. I mean, it grew five and a half centimetres in three weeks. So they were straight on it for that. They needed to like stop, halt the growth before doing anything. So straight into chemotherapy, which for anyone that's been through it, it's really a whirlwind because you sort of go from actually having a cancer diagnosis, but feeling not ill to suddenly being thrown into this space of feeling really poorly, being sick, losing your hair, looking like a cancer patient. Obviously not all chemotherapies make you lose your hair, but often with breast cancer you do. And I just remember looking in the mirror after that, just thinking like, I look, you know, I look ill now. And that's just so horrible, especially being a hairdresser.

I was going to say, did that have an additional effect on you because hair is your job?

Yeah, yeah, I think. But I did manage to, I took a bit of control. So as soon as it started falling out, I got my colleagues to shave it off because I was like, I can't, I can't be patchy. I can't be the sort of person that's walking around the house, just pulling chunks of hair out. I remember the first time I put my hand in my hair, it was about day 13 or something after chemo. And I'd read it would be around that time. And I just remember putting my hand into my hair and a clump just comes out and I just was like, right, that's it, time to get it off because it's so upsetting. And actually it's quite painful losing your hair. People don't realize the follicles of the hair, when they're coming out, it can be quite a painful experience. And within two days of shaving it off, I was squeaky clean. There was no little shards left at all, it had all gone. And then straight from that, within three weeks I think of my last chemotherapy, I had a mastectomy to my left breast, which again was my first ever surgery and at 26 losing a breast. You know, any age is hard, but you know, again, it's a massive confidence kind of thing when you lose something like that. And it's really hard to describe. And even now, as we sit, you know, I've just had an operation and we might talk about in a bit, being flat, you know, because no one else can see it and because it's your breasts and you don't really go around showing your breasts off. People don't really understand how that does affect you, but it really does. And I remember being told I'd have to be flat. for at least a year, probably a year and a half, because I'd gone to have radiotherapy. So it was all, I just remember that whole year being completely whirlwind of, you're in this sort of conveyor belt of treatment. And then once I had my radiotherapy and I'd been on another drug for a little while, which I had to stay on, because it was the HER2 positive side, coming off that, the other end of this conveyor belt and almost being sort of let free and said, right, you're done now. That was so hard because you've been at the hospital's beck and call for a year and you're suddenly thrown back into life and you're like, what do I do now? Where do I go? And that worry is huge.

Yeah. Just going back to the mental effect of looking physically different, losing your hair and being flat chested as a hairdresser and someone that deals with beauty as a job back then, did you have any, did you find any tips for, you know, making yourself look and feel better?

I did have a wig and I did wear it quite a lot, although I did brave being bald several times and I just thought, sod it, I'm probably not going be bald again. Funny story, because I ended up being bald again. But I didn't think I would. So I was like, I'm going to embrace it. And actually, think losing your eyelashes and eyebrows as well, because you lose those, they're also quite hard because you're having to draw them on or having to wear fake eyelashes. For me, I've always been the sort of person, even when I'm feeling really bad, is get up, have a shower, put your makeup on, put your war paint on as such, put something nice on to wear. And that's the way I faced the day. So even if I was at home all day, I'd still try and make myself feel better. And I think for me, as I say, trying to embrace the changes at the point, as much as it wasn't gonna be forever, I knew actually if I do rock the bald, people kind of the amount of you do get some sympathetic looks obviously, but actually the amount of people are like, you are just amazing for doing that. Cause actually until you're in that position, it's really hard. And you can get, mean, I again, didn't get a huge amount of choices of wigs because back 11 years ago, there wasn't that many. You can get some incredible ones now. Like I look at people sometimes I'm like, I almost want to be bald again just because the wigs are so incredible. There's so many different colours and styles. So yeah, I think nowadays I would be better in that sort of side of it. But it is a big change. And I was really lucky that my partner was sort of with me every step of the way on it. And he didn't ever make me feel, you know, like I looked weird or he was always really encouraging of me just doing whatever I wanted to make myself feel as good as I could.

That's so nice and that he has been there for you literally every step of the way.

Absolutely, changed drains and done all sorts of, you he's been there through all of it and, you know, seen my scars. He was probably the first one to see my scar where I know some people don't ever show their partner their scars. And I just think, you know, that I would never have got through it without that.

Yeah. Well, you talked about you were cast off and said, right, after you go into the world, your treatments finished. That was really, really difficult for you. And it was only what a couple of years later, when you started to get symptoms of secondary breast cancer, can you tell us, what the run-up was to finding out that your breast cancer had come back and spread?

Yeah, so I remember holding a party in June of 2015 to say goodbye to cancer and in the following May, which was literally almost a year from finishing my last medication for it, I developed a pain in my right shoulder and I'd been training for a trek, Coppafeel, that's how we met. And so I'd been to the gym, I was doing some personal training, I was doing lots of sort of arms and weights and stuff. And I remember one of the days just feeling like I could pull the muscle. And so I was like, okay, I'll have to rest my arm workouts for a little bit. And it's kind of again, didn't really occur to me much more than that. It was just like, okay, I've done some damage here. So the months kind of carried on. And at the time I was also dealing with another family drama as my mum was really poorly with a neurological illness. Sadly, she did lose her life that year and it'd been again a big stress on the family. So in my head, you know, as much as I was in pain, it wasn't a big deal. So she actually passed away in the June, end of June. And I was then doing this trek in the August. So I remember it being, you know, it getting worse and worse slowly. But I think because we were then dealing with her funeral, then I was having to sort of get everything ready for Iceland. I just, it's amazing what the body can do with pain. And I just put it into the back burner. And I remember being in Iceland, we had to carry our bags on our backs. And every time I had to put mine on, I was asking for help. So I couldn't lift my bag and put it on my back on my own. So I knew it was getting worse. And so when I got back from that, I went and saw the doctors again. They referred me to a physio because they thought maybe it's a rotary cuff injury or tear. And saw the physio a few times. And it was about the third session, I think, in the September that he was like, I think you should go and get it looked at because you might have actually torn something that needs surgical intervention because it wasn't getting any better. And it was the point where I literally couldn't even lift my arm up on his own.

At any of this point, did you think it could be that cancer had spread or were you totally? Totally oblivious myself. And I think that's why I convinced everyone around me that it wasn't because I was so convinced that it wasn't because I didn't really know. And it probably sounds really naïve when you've gone through a diagnosis, but I didn't know what the signs and symptoms were. I assumed it would be something really obvious like a headache or I don't know, I think because I was in pain but it was another reason for that pain potentially to have happened. It wasn't really obvious to me. So when I went in to get my shoulder looked at, they ultrasound it and the guy said, your ligaments and your tendons all look okay. When was your last bone scan? And I can't remember why I had it but I had a previous bone scan that February. So again, the bone scan was February, began in May. So you know not that long after. He then said right I think you know say you need to go and get it CT scanned. So I did and within two hours of having the scan my doctor called me and she just said to me I'm going to prescribe you some morphine to pick up, we'd like you to go and see your oncologist ASAP. Didn't say why just said we've seen something on the scan and I think in that minute I knew it was yeah, really scary. And then I went in a couple of days later, I think, to see the oncologist and yeah, just got told we're really sorry, but the whole of your humerus head is breast cancer cells, which spread. At the time I hadn't had a full body scan, but we then later found it in my spine and my pelvis. And yeah, was told at that point, you know, you won't be able to probably hairdress anymore because you're going to need a full shoulder replacement. You are not going to able to have a family because we're, you know, we need to go straight onto treatment, and we don't know about your future.

Wow. And all of this is in the most difficult year when you've just lost your mum.

Three months from losing my mom. Yeah.

How did it feel then to be told this news?

Devastating. I mean, it was absolutely devastating. There's no real way of describing it. You just fall into this black hole. I completely, I felt robbed of my grief for my mum as well because in that time I sort of... I was still grieving her and I sort of felt like that was really cut short. And I also felt, and again, I know I shouldn't, but I felt really bad for my family. I felt like I was adding another layer, because it is, it's really hard, because you're kind of, you're seeing their grief and you experience their grief, because obviously we've gone through that, but knowing you're gonna then turn around and say to your siblings, sorry, you just lost mom, but you might lose me too. It's really hard, really hard. It's the unknown and I'm at the time no one could tell you how long or, you know, how long is a piece of string. And so I literally thought I've left this six months, I've probably got weeks.

And it's so difficult because, you know, you're here nine years later and if you'd have known that then, everything might have felt a little bit better. And I think that's why we need those stories of hope. And you are now a story of hope for a lot of people because you know, you're someone who is alive still, many years after getting this awful, awful diagnosis. But at that time, I'm guessing you didn't have many stories or people to look at and say, I could still be alive many years later.

No, and the statistics have always sort of been really scary. They're sort of two to five years. I was told one of the drugs that I'm actually still on eight years on, might only work for about 18 months. Like I say, I think you just, it's so hard with a secondary diagnosis because actually even now, sadly, we do lose people very quickly to it. People don't get more than a couple of years sometimes. And so I feel really fortunate to be sitting here now at age 37. But I literally thought I wouldn't get to my 30th birthday. I was 28 at this time. I had so much life I wanted to live, but I had absolutely no idea whether I'd get to any of it. I had to go in and have a full shoulder replacement, which was done in Birmingham, which is three and a half hours from my hometown in Norwich. So completely in sort of the middle of nowhere for me, not surrounded by anyone I knew. And I was in hospital for about a week there and that was such a traumatic operation. And that was again another life-changing ailment because I've never had full use of my arm the same way. But I remember sitting in that hospital bed and saying, right, I've got two choices here. I either... I either spend the rest of my time feeling sad, feeling helpless, feeling cross with the world and that would be absolutely fine. I could do that. Or I say, okay, if I've only got two years, what do I want to do? So I set up a living list and I wrote down loads of things I wanted to do, some things that achievable, some things that are really not, but I thought if it's on the list, it's on the list. And that... I came out of there and I think, because I'd had bit of time to think, and I came out of there and said, you know what, life is for living. However long I've got, I will live and I will treat it, you know, treat every day as though it could be my last. And that's how I had to look at life.

And what are some of the best things you've done off that living list in the last nine years? I've done all sorts. I went to the Maldives, which was incredible. I'd always wanted to go. I got a puppy. I've now got two, but they're not puppies anymore. They're not puppies anymore. No, my oldest is eight, but I got her while I was going through chemotherapy for my secondaries. And because I was told I can't have children, so I said to Brad, I was like, right, get a puppy then. I got married, which was something I'd always wanted. It wasn't on my list because I didn't want to pressure Brad into having to do it. But in my head, it was on my list, which was incredible. We had the most amazing wedding day. Just loads of little things. And what I love about it, it's encouraged my friends and my family to do things with me. So we've done some lovely experiences from nice afternoon teas, gone to visit places, seen certain shows that I've always wanted to see. And I'm forever changing. I'm very much adding things onto there. I'm a yes girl now. Other than jumping out of a plane, I will do most things. And I think it's really important for me because all those little things, I sort of basically was like, right, if I've got treatment next week, I'm going to book something and it didn't have to be much, doesn't have to be a big day out. It could just be going with a certain friend out to the seaside or just doing that thing that you have wanted to do for so long. And every little thing is just giving me that little element of hope and something to look forward to, which is really important. It's funny because no one would wish to have these circumstances that we're in with secondary breast cancer, but actually sometimes you end up doing more living and doing more things than you would do otherwise, because it's unlikely in our scenarios that we would be going for afternoon tea or going to the Maldives in your thirties or whatever. And I think again, the whole not being able to have children situation, I've kind of embraced that, it really affects me still, right? I would have loved to have been a mum and have a family, but I think it's given me other opportunities. I wouldn't just be able to go, let's go here, let's go there. But I've got such an incredible relationship with my friends' kids, my niece and nephew. I sort of look at it as like I'm basically auntie to like 20-odd kids. And they come and stay, and I do days out with them. And it's really special because I've managed to build those relationships over the years, which I never thought I'd get the chance to do. I've got two nieces and a nephew now, and my nephew's now five. And I was like... When he was born, I never thought I'd see the day he went to school or, you know, all of that, or be able to get to know who I was. So over the years, yeah, I've had some incredible moments and it's tough because you never, being in that world of stage four, you never can plan ahead really. You know, there's maybe a year, right? I can kind of see a year ahead, but I know so many people that sadly things can change at the drop of a hat. So I still live by that motto, you know, of life is for living. And it's sometimes easy to get complacent and say, I'm still here. I might be here in another 10 years. But then you lose a close friend who sadly thought the same. And it brings you right back to square one. And you think, right, what am I doing now to live this year? Because next year might not be promised. I feel very, very fortunate that I am coming up to nine years. It will be on the 15th of October, which will be just after this is actually put out will be nine years since I got my secondary diagnosis, which is incredible. Never thought I'd get nine years and I'm doing well. I had a bit of a blip a few weeks ago, ended up in hospital sadly with an infection in one of my implants. So I had to have that removed. So the last few weeks has been a bit of a whirlwind mentally, because I think as much as it isn't the cancer side of it, I put that side of it behind me, the reconstruction, all of that journey. So to suddenly find myself thrown back into being a uniboob and having a flat side and having to negotiate, you know, clothing and bras and prosthetics and, you know, all of that, I never thought I'd have to deal with again. So it's, it has taken me back a bit, taken me back to those days. And I hated being flat and I know some people don't mind it. I don't enjoy it at all. So I'm desperate to get on with reconstruction again and it will happen hopefully next year, but I've got to be patient. I'm not a very good patient patient. So other than that, I mean, that has been a bit of challenge, but the cancer side of things stable at the moment. So that's what we like. It's still in the spine, still in the pelvis, but treatments have been working. Yeah, the difference, because some people say they've got no evidence of disease and it's not, that's not what you have. It's basically you, still cancer present in your body, but it is. Not growing. I say it's come for a sleepover. It's not having a party and found the vodka cupboard yet. Because it's there. It's not gone away. It's not shrunk. It's not changed, but it's not growing. So yeah.

Long may it stay that way.

Hopefully.

Fingers crossed.

Yes.

So you set up Secondary Sisters in 2019 with Nicky Newman, who sadly died two years ago. What was the idea behind Secondary Sisters?

Since my diagnosis, primary or secondary, I'd felt quite lonely because, you know, there wasn't a huge amount of talk about it, especially in younger people, and especially with secondary. And actually when you speak to people, you know, in general, everyone was like, how long have you got? Or, you know, what's your prognosis? Or, yeah, just the only thing people really understood is that secondary equals death. m And that's obviously something you don't want to hear. when you're newly diagnosed and you're young. Or it's, oh, my grandma had it when she was blah, blah, blah, and she died. Or these really horrible comments. So I thought, I really want to do something to try and change the narrative, to educate people on secondaries, to create a bit of awareness around people living with it, not just dying from it. And I remember being at a photo shoot for another event in 2019. And out of 40 people all there with cancer, there was about six of us with secondaries. And I remember me and Nicky just kind of clicking because we were the same age. We both wanted children, but couldn't have them due to our cancer, both with secondary breast. And so, yeah, we just got chatting and ended up meeting up in London a few months later. Had a really fun day out and obviously the best made decisions are over cake, isn't it? So we ended up going for cake and just... I think I remember saying I really want to do something to help the community. And selfishly it's because I needed it. I needed to find my tribe and my community and support. And she sort of said a similar thing. So we just said, why don't we try and do something together? Had absolutely no idea where it was going to go, what it was going to do. But we came up with the name Secondary Sisters and thought, right, OK, let's just set up an Instagram page, let's set up an email address. And let's just put our stories out to the world as we did. And within, I think, a month or so, we got picked up by Stand Up to Cancer, who then decided to come do a photo shoot with us and talk to us about our stories and put a press release out. Now, at the time, they didn't tell us, but they had suspected it would go quite big. I think they didn't want to say because, you know, if something then must happen politically, on the same day, our stories would probably have not got covered. But I remember waking up to hundreds of messages of people, because it had basically gone out to every single newspaper. It had been picked up by all the sort of news channels on the radio. Because we were two healthy looking women who both lived with stage four cancer. And we had this picture of us in underwear with words all over our bodies that were quite harsh words, all to do around cancer and incurable. And I think it was just a really... impactful picture that people read the article. And then we ended up being on Sky News and had like a, I think it was like an 11-minute interview, which is huge for a live TV. And after which our page just grew and grew and grew. And it's a space for people to tell their stories. So we do spotlight posts on people. We also share spotlight posts on charities, organizations that support the secondary community and also information posts about different types of scans. Obviously we were both breast cancer patients, so we talk more about breast cancer because that's what we know. But equally, we've always been a space for any type of secondary cancer and males as well. We had a male recently share his story and it was really nice because it has opened up that side of things because people often thought we're just females, know, breast cancer. And so, yeah, over the years we... you know, we've managed to just keep it going to the point that, as you say, sadly, we did lose Nicky a couple of years ago. But I was determined that despite that, I wanted to keep the page alive and kicking. And I now do not regular regular, but I'm trying to meet ups around the country to encourage groups because I can't do everything. But if I can go to a place, so for example, recently I went to Nottingham, we got 16 people all together for a nice day. Did chocolate making, we did lunch, and then I encouraged them all to swap numbers, set up a little group themselves, and hopefully going forward, they'll meet up regularly. So I'm not responsible for everything that goes on behind the scenes after that, but it's just setting up those little pockets because for me, community is so important and there is a lot out there for research. There's a lot out there for other types of charities that talk about awareness, but actually how many people are able to come together because of that. And that's where I really, really think, you know, what we're doing is needed because people need that support. They need to find their tribe and their family because you can't talk to your, I call them muggle friends because, you know, cancer muggles, people who don't necessarily understand unless you're in this position and even down to primary and secondary, there is a difference with our discussions, what we talk about. You know, I'm often meeting up with the girls I know locally and we'll sit in a café talking about our wills or our funeral plans or things that you shouldn't normally have to talk about in your 30s. But they're really important conversations to have.

I mean, it's such a valuable thing to have. And because I had met you in Iceland in 2016, then when I got my secondary diagnosis in 2022, I'd seen all the stuff that you were doing with secondary sisters and with Nicky. And so when I had my secondary diagnosis, I knew that that group was there and that was actually really meaningful to me to be able to, I mean, I could contact you and cause you were someone that I knew and, tell you, just tell you that I'd got this diagnosis, not necessarily expecting to get loads of advice from you or anything like that, but just to have that other person and then group and community and to know that there were thousands of other people that were going through this was just a comfort in some ways, just knowing that I wasn't on my own. Whereas when you were diagnosed, you didn't really know many other people with secondary cancer, did you?

No, and that's exactly the driving force behind it because I know what it's like to feel so alone in that space and not being able to really open up fully. And as much as Brad has been through my journey with me the whole time, but even he doesn't understand some of the thoughts, the feelings, the emotions that come with it. And I needed that and that's exactly why I did it, because selfishly I needed it. And I knew that if I needed it, other people needed it. And even if someone never comes to a meet up or meet someone personally, to be able to go to that page and see stories of hope, information about things maybe they didn't know about, know, advice, charities that support, because there's so many incredible charities that they can reach out to to help with special day outs or gifts. And unless that information is out there, perhaps could advise things about trying to get certain benefits or trying to get help financially. I get messages from people saying, because of what you share, whether it's through my personal account or through secondary sisters, my daughter now checks her breasts and she's gone to get seen. Or recently a girl sort of messaged me saying, I've had problems with my implant and I've seen that you've had issues. I've now gone to get that checked out because I didn't know I could have a problem this late down the line. It's all of that and knowing that just one person has found information that they really needed because of what you do. And even down to another one, I did a meetup in Essex and a lady there came to me and said, this is the first time in five years that she had met anyone with secondaries. And so she was really grateful. And then we did another event on metastatic day later that year. And she came and found me and she was like, thank you, because I've now got my community. And that is just so special knowing that you've helped that person. I, you know, I don't, do it completely voluntarily. I don't make anything from it. I do it in my own time, but I know the importance of it and that's why I keep it going.

You've helped so, so, so many people as you've just kind of illustrated there. What do you get from it, from doing Secondary Sisters?

Purpose. I think when I was, before diagnosis, you know, I had my own career. I loved, I'm a sociable bunny, love being around people. Hair dressing is kind of a, it's an all-rounder, isn't it? You're like someone's mentor, counsellor, everything, because you talk to them all the time. And I think I missed that when I left. It wasn't just a career for me, it was a life. And so actually I needed a purpose that gave me purpose. I think that like knowing you've helped that person helps someone throughout, whether that's... And this is the hard thing with it. I have lost many people, but knowing you've been a very small part of their life and helps them in some way, even if their time on earth has been short, that just, that is exactly what keeps me going. And that's why I do it. And I think I'm just not the sort of person to sit around and do nothing. And I know my life is busy in many ways. And I think a lot of my friends are like, you've got, you know, you don't work work, but you've got more of a busy life than they do. And they've got kids and full-time jobs. But for me it is important and my voluntary work I do with charities, the things I've done over the years. I've had lots of amazing experiences because of that. done modelling, I've different photo shoots.

Done The Show for Breast Cancer Now!

I have done The Show for Breast Cancer Now. That was an incredible experience and I actually was the main speaker for them. So very scary in front of the whole audience, but it was an incredible opportunity. Again, I think by me sharing my story, whether that's through Secondary Sisters or my own platform, just it helps me because it helps me to process what I'm going through. It's, yeah, I've managed to build an incredible community around me of people that, you know, follow that don't even have cancer, but they're interested to find out, you know, because maybe they know someone, a loved one that's got it and they want to know how they can support that person. What I'd say is, you know, my life hasn't obviously minus the cancer, my life is amazing in that sense. I've got, I've had experiences through my living list. I've had experiences through the charitable work I've done. I've done things that I would have never ever dreamt of doing prior because my confidence probably wasn't there. It's given me that drive to be like, yes, take that opportunity, do that thing. You know, I would have never have done it if it been for cancer. If I could just not have the incurable part, I'd be fine. Sadly, that's not the case. But even now I'm like, okay. I still don't know how long I'm gonna have and I'm still taking day by day, year by year and making the most of what I can while I can. And secondary sisters have been a major part of that and it's kept me sane and kept me going.

You've made loads of friends within this community and you have lost a lot of people over the last many years. How does it feel to lose people to secondary breast cancer when that is the disease that you live with as well?

Challenging. It's very challenging. Sadly, I am very immune to it. I think I went not last year, think it was the year before I went to seven funerals in seven months. I don't obviously go to everybody's who I know because a lot of people I know on a sort of surface level, but I have become very close to several people over the years and that is those ones hit hard. They do really hit hard. I sometimes get asked, why do you do it? Why do you put yourself in a position of doing it? And my answer has always been that setting of it's better to have loved and lost than never loved at all. And I really believe that. think they've given me as much as I maybe have given them over the years. And even I find sometimes that loss spurs me on to live. Those funerals give me that opportunity to cry. And sometimes we need that. Like it's quite cathartic to go in a safe space where you can literally spend half an hour sobbing. No one's going to question why. And it's not always sobbing just for their loss. It's sobbing for the life you've lost and the friendships you've made and all the things that happened over the years. And just having that permission sometimes to do that is actually quite healthy.

How do you, A, protect your mental health and B, what time do you spend away from the cancer world? And do you have a network of people? I know you've got your sisters, but do you have friends? who do not have anything to do with cancer that you make time for. I do. I'm very, very grateful that I have an incredible friendship circle that are nothing to do with my cancer. Some of them I met through my primary, but a lot of them are sort of friends I made before, thankfully. And it's really healthy to have that. You need to have that. I give a huge amount of time to my friends. They are very special to me. And they're the ones that I do. call upon when I need, especially if I've had something wrong, they're the ones that will turn up. I've got in Norwich a really lovely group of my secondary girls, but again, I am really close to them, but I have to keep that separate sometimes and not constantly be meeting up with those girls. It's important to have both. I think I need both. I need to be able to have time, as you say, away to do the things that are nothing to do with cancer. And they will always say, how are you doing? you know, how are things. But I sometimes just don't want to talk about it and that's fine.

Yeah.

We love to travel as well. And I think that's really good. It's my way, mine and Brad's way of kind of escaping the reality of life. I went on a few years ago, one of my things on my living list was going to Husky sledging. So we went to Finland and it was incredible. And we were the same group of people for the whole week doing all these experiences, snowmobiling and stuff. I didn't tell anybody until the last day of my diagnosis because I didn't want anyone saying you shouldn't do that or we'll advise you against that. I wanted to just be Laura. And I want to be Laura to have fun. And, you know, sometimes when you're away, you can, you can just be yourself. So I think that's been a real good way of us having that time to protect our mental health, to get away from the hospitals and the appointments in life. I think, yeah. And that's my advice I'd say if people had that worry is just find things that you can step away from it.

You've become a sort of figure of hope within the breast cancer community because you have lived for quite a long time with secondary breast cancer. How does it feel to be a figure of hope in that way? Does it put extra pressure on you?

I mean, it's lovely of you to say that. Thank you. I don't really... It's a weird one. don't, as much as I kind of know that, I don't sort of sit there and think it, do know what mean? Like it's really amazing when people do say, you you've given me this hope or you've given me the support. But I think I always just say, I'm just Laura and I'm just living my life and sharing my life. And I'm not doing anything special. You know, me sharing my journey is as much helping me as it is helping potentially other people. And I share what my reality is. I feel very grateful that I have given that to people.

Yeah. I think I remember it must've been during lockdown I saw, I think, Instagram live that you and Nicky did. And it was the first time I'd seen Nicky talk about anything, but you were both talking about losing that chance to have children, to become mothers. And it was really... a really powerful, really moving conversation, seeing these two women speak so openly about how they had really wanted to become parents and neither of you had been able to.

Yeah, there's a lot of levels of grief within cancer. And I think that is for both of us, actually was one of the really hard things about having a secondary diagnosis. And there is that element of people sometimes like, oh, you could adopt or you could do this, you could do that when you're given a very short window and you don't know how long that window is going to be. Those sort of things you can't just go and do unless your other half is willing to, you know, take it on completely on their own. And I remember like, again, having those sort of conversations are important. think for me, and I remember having this actually with a girl locally to me recently who was diagnosed straight to secondary. She'd been actually thinking they were trying to start having a family and then plans have now stopped. And I said to her, like, I'm eight years on, right? And I still struggle. I still have that grief. I still get upset when I hear someone is pregnant. I still have that gut, like horrible gut feeling, you know, when you sort of, you just get punched in the stomach. But I said, you know, that's normal. And she said to me, thank you, because I know I don't have to try and get over this. Because it is something that people sometimes say, oh, it's been that long, you should be fine now. You don't have to be fine. You don't have to ever get over that. You don't have to ever get over your you know, even the diagnosis, you don't have to get over that. This is something that's always going to come at you. That's the meaning of grief, isn't it?

Yeah, grief is.

And it doesn't mean you're upset all the time, but you are allowed to feel that. And I think that conversation actually, when we've had it on secondary sisters and we've sort of discussed it really openly, people really can relate because it doesn't just affect people with cancer either. There's many people out there that are infertile through various reasons. And it's a big thing.

Can you explain the technical reason of why getting a secondary diagnosis meant that you would probably never become a parent? So yeah, so a few reasons. Firstly, I was never offered the egg harvesting, which some people get because my oestrogen levels were so high, the risk of, especially through my primary, they wanted me straight onto chemo because of my age, they were like, you'd like to get your fertility back. So I never did egg harvesting at that point. Come around to the secondary again similarly they just wouldn't have been the time because they have to pump you full of so many hormones and egg-harvesting you know that would have been probably the only route that we could have done in terms of surrogacy and things like that because then it have been a biological child of mine. Carrying a child especially once I had secondaries would be a no-no because I would have to come off all my drugs. Now if I came off all my drugs likely is I wouldn't be alive to see the pregnancy through, let alone raise a child. And as your team will quite rightly say, their life is to save, their task is to save your life. And if they're not doing that, then yeah, it just wouldn't be able to happen. I just wouldn't, I wouldn't be able to risk it. If I was to come off my drugs to try and have a baby and it spread, I would never forgive myself.

Yeah.

And it's weighing up that balance, no matter how badly you want something, you obviously want to live more than take any risk. And if someone had told me in 2016 that you're going to be here eight years on, would I have pushed to try and do some other way, some other surrogacy, some other way of bringing your child into the world? Maybe. But no one could have told me I'd have eight years. And even now, no one will tell me how long I've got.

Is there a reason why you think your treatment has worked so well for so long or is it just luck? I think it's luck. I mean, people will say, oh, because you're positive and da da da da, just, everybody is different and everybody, you know, there's... I always do think there is a reason why we're here sometimes on earth. And if my reason is to give people hope and share my story, then so be it. But at the end of the day, it is luck. You know, we never know what drugs are going to work, when they're going to work, how long they're going to work for. And I just feel so grateful that I've had this time because I know so many people don't get that. And new drugs are coming out all the time. And I always say, all I want is time to allow another drug to potentially be out in the market. And I feel, you know, there are a few lines that I would have now if this treatment stopped working, whether they work or not is another story. We don't know that. But I feel hopeful that if this stopped working tomorrow, I have other options. And that's all we need is we need another option. We need something that we can have that hope because when those options run out, that's when it becomes scary. Not that it's scary all the time anyway, but yeah, I do feel lucky to be in a position that there are new things coming out. We just want those six months, that extra year. It may seem very small in the grand schemes of life, when you are living with something like this, they're huge.

Yeah, it makes a huge difference. What would you say to someone who's recently been diagnosed with secondary breast cancer?

Allow yourself time to process it. think people will sometimes look at myself, you, other people in the secondary community and think, how are they doing it? How are they so positive? How are they living life? Remember, we've been at that point. We've been in the dark hole. You have to find your way out of that dark hole a little bit. But allow yourself time because it's grief. It is huge. It's a massive change. You've got to get your head around it before you put yourself out in the world. But what I would say is I've always used the narrative of a dark tunnel and you might not see the light at the of the tunnel. That may never come back. But what you will find is as you go through that tunnel, there will be cracks in the outside and those cracks let in a little bit of light. And then you might walk a bit further and those cracks might turn into holes and those holes will let in more light. And you might go back into the dark again, but eventually you'll get out and more and more and more holes will appear and those light moments will overshadow the dark. And you have to just grasp onto those moments.

That's a beautiful analogy.

Yeah, I really like that because it's not linear. You might go in and out of that grief and you'll feel better. Sometimes you'll feel worse, you'll feel better. You'll feel worse again. It's just the way it goes, pressure on having to be okay. You don't have to be okay. You can hate the world and that's also okay.

And that's something you shared really well recently because as you said, you did have an infection only a couple of weeks ago. You were in hospital for quite a few days. You had a surgery to remove your implant that caused the infection, but you shared all of this on social media and you shared a video of yourself crying, which is so impactful when you see this person who is often posing in beautiful dresses and doing modelling shoots and sort of coming across as a person who's really got it all together and is beating cancer in some ways. There's a certain way that you come across on social media and you're an inspiration to a lot of people and you provide hope to people. So for them, you to be in hospital, really struggling and saying, I'm really, really struggling. I think I imagine you had about a million messages from people.

It was a lot. It a lot, it's showing that vulnerability.

Yeah.

And I think for me, because social media wasn't a thing when I was first diagnosed, when I went through, you know, chemo, radio, surgery, I had eight operations in three years. I had, you know, two lots of really harsh chemo. I lost my hair twice. People actually have never seen me like that. They don't know that side of me unless I've shared, you know, throwbacks, because they didn't see me at that time. So to suddenly, as you say, go from this sort of positive, full of hope person to someone who's really vulnerable, who's sharing the fact that you feel like utter, you know, don't know if I can swear, but s- h- i- t-, I felt awful and not just awful physically, but mentally. And even now, I'm, you know, I'm not, I'm not okay with what I've just had done. You know, I don't like it. I'm better than I was a couple of weeks ago, but I was like, actually it's really important I share the realness of this because this is happening to me now. And I was not in a happy space. I got up one morning and I think I cried for four hours straight. And that is the reality of this journey. It's not linear. It's not once you're on the sort of the happy train, you'll be fine. It's actually you're gonna find moments that hit you and take you right back to square one again into those dark holes. And I felt that this time around. And like you say, I got a lot of messages because people were like, oh my god, like I'm relating to what you're going through. Or I felt like that too. And so I think in anything, whatever we do in life, we should show the good, the bad and the ugly. And it's really important that people don't just think she's okay, why am I not? Whatever happens, I want to be me. And I've never been this person that everything's all shiny and like professional, like my photographs are very much like me on my own. They're not clean and beautiful aesthetics and I've always tried to be, if someone saw me down the street, I'd be that person. And so actually bringing that realness to my stories wasn't even something I considered, wasn't, oh my God, look, because I look back at some of my stories on that week and I was like, oh my God, I look awful. You know, because I was grey and I was really in a lot of pain and not in a great space. But I also look back and go, but that is how I was at that moment in time. And if people don't like that and they can't, you know, they want the positive and the happy, then I'd rather not follow me because actually my ethos with my influencer sort of title has been I want to just be Laura. And if Laura comes with, let's say, the good or the bad. That is what I'm gonna show. There are many downsides to social media, but I think that is really an upside that we live in an age now where you are able to share about your illness with people online and people can see that and that can give them the hope that they're not getting one-to-one necessarily around gosh, and the messages kept me going, honestly. I couldn't reply to everybody, but the messages coming through kept me going while I was in hospital. It was so incredible and people were so beautiful with what they wrote. I had a lot of love.

If you could meet, was it 2018, your secondary diagnosis?

2016.

If you could meet 2016 Laura and offer some words of comfort with the hindsight of the last eight or nine years, what would you say to yourself?

I just wish that I had me to look at when I was there. I wish I had that person that I could look at and say, there is hope, there are people that living longer with this. There's gonna be good days again, because at that very beginning, I didn't think I'd be able to smile or laugh again. I didn't think I'd be able to go somewhere without bursting into tears. And to know what I know now, and that life can be beautiful, and you can do incredible things if you allow them to happen, and you can live a beautiful life despite the illness hanging over your head. I would just wish I'd known that at that point because not that it wouldn't have made it any less scary, but what it would have done is just given me that slightly wider picture that I didn't get at the time. And all of that is of course with the consciousness that a lot of people don't unfortunately get the time to do any of that stuff because sometimes the cancer takes control, moves super fast, you know, we're talking from a point of view of very fortunate people who have been able to do stuff and live our lives. I think within the stability of your disease to be able to say, okay, I'm going to live with what I've got now and I'm going to do even in the early days, I mean, was in, as say, I went to the Maldives within, I think, three months of finishing chemo or something because I was just like, if I don't do it now, I may never get to do it. So it's sometimes about just actually taking those leaps and saying, I want to do it now. And, you know, as long as you've the go ahead from your team of traveling and able to get insurance and stuff, I think you've just got to sometimes not put off life. And that's the same for everybody. You we're all so busy with work and children and we put off things all the time. And sometimes it's about saying, why am I waiting? Why, if I really want to do something, why am I not doing it now?

Absolutely. People with no cancer, people without cancer have a lot to learn from you.

Go and do that thing you've been putting off.

So 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 it mean to you to live well?

Living well for me is definitely about being able to spend quality time with the people I love, doing things that I enjoy, having a bit of a purpose and having hope. And I think that is one word we've said a lot actually the last, you know, throughout this podcast is hope. And without hope, what is life? Because we can... despite our prognosis is, know, hope is the one thing that will carry us through and give us that ability to look forward. And that might not mean you're going to have a very long time, but even just having that little bit of hope, that little bit of glimmer means that living well will be a bit easier for people.

What gives you hope? I think it definitely is just like loved ones and seeing life, I think for me, especially being now of an age where my friends and my family have had children, like they give me hope. They give me hope that I might see them grow up. And I think, definitely love and support from people, you know, I couldn't do it without them. And hope that, you know, there will be something around the corner just to keep me here that little bit longer.

Finally, where can people find out about you, follow you and also Secondary Sisters?

So Instagram is the best place. I have got a TikTok account, but I'm very new to it and I don't really know what to do. So Instagram is @baldbooblessandbeautiful, bit of a tongue twister. And it's @secondary.sisters for Secondary Sisters. And as I say, I share all about my life on my own personal one. And then Secondary Sisters is more about actually secondary cancer in general.

We'll share those links in the show notes of course as well. Laura, thank you so much for everything you do for the secondary cancer community and thank you so much for sharing so honestly and openly with us today.

Well, thank you so much for having me.

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