This podcast contains the personal stories, opinions and experiences of its speakers, rather
than those of Breast Cancer Now. Welcome to the Breast Cancer Now podcast, providing support and
information to anyone affected by breast cancer. I'm Laura Price and I'm the host of the Breast
Cancer Now podcast. I'm a food writer and author and I live with secondary breast cancer. This
episode we are talking to Emma Campbell, who you may know by her Instagram handle limitless_em.
Emma is an author, a public speaker and a single mum of four who, like me, is living with secondary
breast cancer. She is the host of Open with Emma Campbell, a podcast where she has open-hearted
conversations with guests including TV presenters Gabby Roslyn and Denise Welch and
Breast Cancer survivors and thrivers like Leanne Perot and Carly Moosa. Although she goes by the
Instagram handle limitless_em, Emma writes honestly about her mental health and reaching her
limits. Today we'll be talking about Emma's experience of secondary breast cancer, her
friendship with the late Dame Deborah James and how she keeps going when she feels far from
limitless. Emma, thank you so much for joining us on the Breast Cancer Now podcast. Thank you so much
Laura, it's lovely to be here. How are you today? I'm okay today, I did wake up in a bit of a kind of
slightly overwhelmed Monday juggling a lot of plates before nine o'clock in the morning kind of
mood, but I did a bit of a reset which I'm trying to get better at doing by just doing a few things that
helped me ground myself a little bit and start again. Okay, well maybe we'll talk about that in a
bit because probably lots of people would like to know how to do a reset. So you, like me, were first
diagnosed with breast cancer more than a decade ago. Can you start by telling us what your life was
like before breast cancer and how that initial diagnosis came about? My life before was, you
know, in the year or so leading up to the diagnosis was really challenging. So it kind of, I often say,
I feel like I was already at a bit of a rock bottom when the diagnosis came along. So in 2009, I, at the
end of 2009, I gave birth to triplets after sort of four years of secondary infertility, had my
lovely eldest son, went through miscarriages, fertility treatment, IVF and, you know, the
miracle, magical news of finding out I was carrying healthy triplets, but also quite
overwhelming and unfortunately my relationship became more and more fragile and so throughout the
pregnancy was going through those physical changes, those hormonal changes, but also a very
turbulent personal life. So stress levels were extremely high. And when the baby's born, you
know, another few months of the reality of the relationship falling apart, managing the babies
and all of that. So it was an incredibly difficult time. And then when they were five months old, I got
my initial diagnosis. So what happened? Did you find a lump? Did you have different symptoms?
Yeah. So I'd had a lump in my breast for several years in my right breast that I'd had checked when
my eldest son Jake was about two and a half. I'd had a mammogram, was told everything was fine, and that
lump remained unchanged. And then throughout the course of the pregnancy, again, rather than sort
of put on a lot of weight, I actually lost a lot of weight because I think the babies were kind of just
taking what they needed and also sickness, stress, just sort of running on adrenaline
really. So I was very, and I was very aware of physical changes. And in the months after the
babies were born, I was aware of changes. I was, you know, I'd been expressing around the clock. And I
was aware of that lump. It was almost like that lump had gone. But I couldn't feel that small, hard lump
anymore. But when I was, I'd be sort of lying in bed at night and the rabbits have sleep, so lying on my
tummy, I almost felt like I was lying on something. And so the small, hard lump, as it turned out, had
become a five centimeter tumor. But I think I was in such a heightened state of survival mode that I
ignored those changes. I ignored those changes for several months. It was almost like my brain
wouldn't let me go there. And it was only, it was one night in the middle of the night, I was feeding one
of the babies two, three o'clock in the morning, and I happened to just put my hand under my right
arm, and I felt a small, hard lump. And I think that was a real sort of universe tilting moment of shit.
You know, I just, I, in that moment, I felt like I knew. And I still took me probably a week or two to
ring up the GP because that's what I've always been very good at, putting things off and burying my
head in the sand. But I did ring the GP and from then on, everything happened very, very quickly. And I
got a diagnosis of a five centimeter tumor with lymph node involvement. And what, because
obviously you were breastfeeding then, what treat, oh, were you I was expressing, you're
expressing, so I expressed for the first six weeks, and then it just became and said, no, but I
was, I was formula, but feeding them sort of constantly, as you can imagine. So were you then
able to have treatment? What treatment were you able to have? Yeah, so I was immediately, and you
have to forgive me because I can never, ever remember the names of those initial full on breast
cancer, you know, people say, oh, the red one or feck, or, you know, but I, I'm really, it was, and it
was nearly 14 years ago, which, you know, what a wonderful thing to be able to say it was nearly 14
years ago. But I was immediately, it did all happen very quickly. So I was, I started on chemo to shrink
the tumor with the plan being I'd have the mastectomy and reconstruction. And yet I wasn't
feeding the baby. So I was able to just embark on all of that treatment. So life sort of shifted from
being this newly single mum dealing, looking after a six year old and baby triplets in a top floor
flat and kind of friends doing a rotor of helping me with nappy changes and occasionally sleeping on
the sofa to that mum, that me, and then adding on a diagnosis. And so the sort of, the anti upped
dramatically. And it just became almost like it went from a small community of friends and family
to almost like, I don't live in anything like a village, but it almost felt like everyone then
just, you know, word spread. And suddenly I was had people from everywhere sort of turning up and
helping and just holding me through it. I mean, you, no one could do that alone. No, I mean, it's the
strangest thing because I couldn't have done it without all of the help. There was, there was so
much practical help. And I just surrendered to it. You know, we find it, we find it hard, don't we, to
say, yes, it's really hard. We, we want to hold on to our independence. We don't want to be a burden in
inverted commas. But I remember very early, sort of towards the end of the pregnancy, pre
diagnosis, a good friend of mine who's, who already had four, four children at that point. And
she was hand going through some baby clothes to give to me. And she said, just if I can say one thing
to you, just say yes to every offer of help. And at that point, and that was all about the babies that
were coming. And I just never forgot those words. And it became something that, you know, in the
months and the years that followed, I, I said yes, I had to say yes many, many, many, many times. I think
that's great advice for anyone who has cancer, anyone who has children. Just anyone in general,
you know, we are, I think perhaps as, as Brits, we are quite bad at accepting help. Yeah, I mean, I
know I might be leaping ahead slightly to a kind of what would you say to someone, but you know, that
kind of question of, you know, what, what, what can I do for my best friend who's just had a diagnosis or
my neighbor or my cousin or whatever. It really is, don't wait for them to ask you, just kind of just
offer or just do things unexpectedly, you know, and I think that's the key difference because as
the one going through it, I don't know about you, but actually ringing up someone, would you mind
going to the supermarket for me? I can't make it, or I don't feel well enough to cook dinner, would you,
I don't know about you, I would find that very difficult. Whereas the friends that were saying,
look, I'm in the supermarket, I'm going to be driving past your house in half an hour. Oh yes,
please, can you bring, you know, that to me was a real reframe and it made it much easier to say yes
over and over again. Yeah, and it's a much better thing to do than to say, how can I help or what can I do
to help or let me know if there's anything I can do to help because you just don't, you don't even
necessarily know what you need. And yeah, I completely agree with you that I would feel
embarrassed to ask a friend to go to the shops for me or to do this or that for me because I know that
they've also got loads of things on their plate, you know, they've, all my friends have got kids,
you know, they've got lots of things going on. So yeah, take a meal round or... It's just that it's
thinking ahead and it's just those lovely gestures of, you know, the simplest, the simplest
things I remember coming over from the hospital one day and a lady that I'd only hadn't seen for
years, you know, she was a prenatal, you know, baby, anti-natal baby class and she'd come in,
she'd heard I wasn't well, she'd come in and she'd clean my kitchen and she'd taken all the dirty, all
the bedsheet, you know, the washing away and she bought it back the next day and that was just like,
you know, you never forget things like that. That's so lovely, yeah, that's a really nice one to
do. So we've talked about the primary cancer and treatment. When did you find out that the cancer
had spread and how did you get that secondary breast cancer diagnosis? So I responded
incredibly well to the initial treatment. I was told I was cancer-free and I had every reason to
sort of feel that, you know, that was it, it was done. And so those next few years were really
about, well, physically, you know, as we do our bodies, if we're fortunate, resilient and strong
and I was in my 30s, my body bounced back, you know, it took a long time but you restore that physical
fitness much quicker than the emotional. And so I've often talked about how devastating the
emotional impact was in those, in those sort of three, four years that followed where I was
technically kind of fitting well. But inside I was living as though I was dying because my fear was
just so amplified all the time. And actually, so 2010 was the initial diagnosis and then it was
coming to the end of 2014, just as I was at the point where my oncologist was saying, right, see you in,
you know, a year rather than six months or whatever it was. And I, and I was feeling really well, really
fit. I was exercising, I was really feeling that life was opening up again, you know, and I
developed a redness on my chest. And I put it down to again, me being the queen of denial. I put it down
to, I was doing lots of that, I'd started exercising again, you know, I was, I was like, oh,
maybe it's my sports bra rubbing, or maybe it's detergent, or maybe it's, you know, am I ever doing
it with the push-ups? And so weeks and weeks went by and the redness and itchiness increased. And
there were a few false starts I was told initially, and I know that's fine, you know, secondary
wouldn't present like that. And then anyway, just before Christmas 2014, I was told the cancer would
come back in my skin, which, you know, I mean, that's, this is a whole big conversation for me
because I am very sensitive to the terminology around, around cancer. And of course, the skin is
an organ, which means that it's a secondary diagnosis at stage four. But I also sort of hold on
to the fact that, okay, the skin is an organ, but in terms of where it was, it was, it was still, it still
felt like quite a localized recurrence. And it's been confusing for me because in some ways,
obviously, I know it's secondary and it's stage four. But it was also, has felt like a localized
recurrence as well, you know, so sometimes I kind of, depending on my mood and my state of mind or
where we're at in the time of year and triggers, I can be kind of like, yeah, it's just, you know, it
just came back there and then it went away, which kind of it did, you know. So that was in 2014. So I
went straight back on and they couldn't operate. It was still her too, which was, I think, a good
thing in terms of I'd responded very well. This is her set. Her set, yeah, the her too positive. So I
went straight back on chemo, which then, again, I can't remember the name of those chemo's, I didn't
lose all my hair, I did the cold cap this time and I sort of developed a bit of a Bill Bailey, you know,
not much hair on top and wispy at the sides, but I held on to it. And chemo was really rough again, but
then it's segwayed into the kind of Hoseptin, Patuzumab and Hoseptin, you know, combination,
which, and I did really well. I mean, I went straight back into kind of remission, no sign of
active disease and remained on that combination every three weeks, the sort of, you know,
maintenance treatment, I guess, until 2019. And throughout the pretty much the whole of 2019, I'd
noticed changes in my other breast. And again, I'd ignored them. So really, I feel, I could, I can feel
embarrassed by that and almost if I'm being really hard on myself, I feel embarrassed to admit that
because there are, I ignored those symptoms and yet I'm still here doing well. So is that the luck of
the draw, but at the same time, so I don't in any way kind of gloss over the fact. It's just me being
honest about my fear and how that manifests itself and how I still find it easier to ignore things and
immediately get them checked. So by the time I, I'd spent months noticing changes in the other
breast, but because I was still getting examined at the hospital every few months, and they weren't
really picking up on it, which isn't their fault, but I wasn't pointing anything out. I kind of would
just lie there crossing my fingers thinking, well, if they haven't noticed, then I'm not going
to say. And again, life was feeling good. And I was so scared of sort of, I wasn't even going to
blissful bubble, but I, you know, he's just so terrified of going back to that place. So it was at
the beginning of 2019 when my bloods had, I was told my bloods had just tipped over the abnormal range.
And that's what then, and then I remember breaking down with my oncologist and saying, I knew, I knew,
and I didn't say anything. And he was so lovely. And he said, it's okay, it's still be, we'd still be
doing the same treatment. It would still be, I felt real shame, you know, and guilt that other people
who were so on it and so brave, braver than me and immediately picking up that phone and getting
things checked and facing those fears were maybe not, not doing as well, you know. But of course, you
have to remember that you have four children that you are, you know, looking after and you're
presumably trying to keep your head above water as most mums are. Yeah, I think it's keeping your head
above water and just, and just being, I think, when you haven't been able to get a handle on your fear,
that you just go into whatever works for you as a coping strategy. So I'd rather, it's for many,
many years rather live with the internal agony of the niggle, is this something then just face it
head on, you know, and that's something I still have to really work with. And was that another
primary breast cancer? That was, see, this is again, and I feel that I should know all of this.
It's another recurrence and I don't feel like I ever got a clear definitive answer. It was still
the same her to it hadn't mutated, which was great. And it meant that then I had another mastectomy. I
went straight on to Cadsila TDM1, which is what I've been on ever since. And it's worked
incredibly well for me. So, and that has felt very manageable, you know, it's very well tolerated
for me. And I seem to respond to it very quickly. The tumours in my left breast sort of just really
shrank and really responded very well. And like I said, just before we started talking on the PET
scan, I was told I had a tumour in my lung. So I had a mastectomy that year and I had a partial
lobectomy, lung resection or whatever they call it. And but it by miracle that that lung tumour
turned out to be a benign tumour. So in that, so again, it's like, okay, so, you know, that I don't
have a definitive answer about whether that was a primary or a, and maybe again, did I not talk about
cognitive impairment of like, did I not take in what they said? Have I not asked the right person or
the right question? Can I phase asking it now? Not really. I think there are lots of grey areas in
cancer. And there's also just so much information to take in, isn't there? And, you know, sometimes
we, I guess, yeah, just can't process all of it. And we deal with things the way that we need to at the
time. So again, for me, I could sort of go, yeah, I'm just going to think that's another, that's a new
primary, you know, and because again, my ways, you know, my way of, I try to work so much on my mental
wellness around it. And but the physical side of it, you know, there are so many incredible voices,
for example, online, and I've continually advocate for us knowing our bodies and pushing
forward. And I have always really struggled with that because of my own, I mean, not being able to
walk that talk. So I kind of go quiet on all of that really. So yeah, there's a lot more I probably
could know about my disease, I guess. Well, we'll move on to that in a moment about your mindset. But
first, I just wanted to say this year, 2024, you'll have been living with secondary breast cancer for
10 years. And I just want to take a moment to say how incredible that is just to sit here and take it in
because when you're diagnosed with secondary breast cancer, like you and I know, your immediate
thoughts often turn to, I'm going to die. And to be sitting here with someone who has been living with
that for 10 years and who is, you know, here and quite well is just something that gives hope to
others. So firstly, you know, thank you. And that's the thing, you know, if I'm, you know, we all
kind of try and find a sense of purpose and make sense of why things have happened. And I can't tell
you what that feeling is like for me on a very personal level, I'm still here. But also, all I
wanted 14 years ago, you know, and then 10 years ago was, was that I wanted to know where to look for
stories of long term survival. And that was very, from day one of my primary diagnosis, because I was
so driven by fear. And with the secondary, for me, a secondary diagnosis meant death. I mean, that is
what it meant. There was no gray area. There was no, it was just, and so, you know, that I remember that
day very clearly that Friday and I think it was like Friday, the 16th of December or something. And I
remember exactly where I was. And it was the darkest, darkest, blackest day. And if I'd known
where to look at that point, I think it would have helped, you know, to, yeah. So I'm, you know, I'm
lucky, I'm fortunate. I'm, but I'm, if I, if I can just give someone a little bit of, it's a God, look,
she's still here. She's doing okay. You know, then that's, that's what a brilliant thing to be able to
do. I listened to another podcast recently with Chris Hallinger talking to Liz O'Reard and Chris
has lived with secondary breast cancer for nearly 15 years. And she was saying, the one thought she
had had was their story is not your story. And I found that really, really helpful because it
perhaps sounds unfair on people who, you know, live for a much shorter time with secondary breast
cancer. But when you have secondary breast cancer, you need to listen to the stories of people
who have survived for much longer. And so, yeah, the more people who, I suppose, survive for
longer, the more we can look at for that hope. But, but to hear their story is not your story, I think
just is something that allows you to stop comparing yourself to other people and to, to
believe and to hope that you will be okay. Yeah. I think the massive difference, I think what's so
important to recognize in that is that 10, 15 years ago, because there wasn't the cancer community
that there is now, there wasn't the online connections and the way we can see into each
other's lives and the differences and the fact that cancer is a word, you know, with 200 different
sort of versions of an illness, you know, underneath that cancer umbrella. And whereas for
me, 10 years ago, 14 years ago, there were just the scary headlines on the front of the Daily Mail, or
it was the, you know, sitting in the hairdressers and picking up a copy of a magazine and be some
tragic story of someone. And that, obviously the tragic heartbreaking stories. Whereas now, I
think, because we, we have all these incredible, if we're fortunate, or if we've made a decision to
not even use social media, media, but to observe the way other people's like, you see that the
heartbreak, but you also see the hope, but you also see, yeah, every situation is so, so different. I
think that's, so I think that's a really important point. And that's one of the many benefits, I
think, of a community like Instagram, a platform like Instagram. Well, I was going to ask you that.
So you originally had your Instagram account, M plus four, which was me and the kids, chatting
your, your, your story of motherhood with four children. But a few years ago, you changed it to
limitless_em. Why did you pick that name? And what does it mean to be limitless? I picked that name
because I'd begun before that third diagnosis between the second unit, yeah, before the third
diagnosis. I, you know, I really had reached some really dark mental rock bottoms with my inability
to live in the moment with my inability to, to the idea of letting myself feel any joy or happiness
was terrifying. I didn't feel safe. Nothing felt safe. I looking in my diary, even though again on
paper, I was doing really well. But the idea of talking about three months time or six months
time, I just was in a permanent state of catastrophic thinking. So when I reached a real
rock bottom and I sought some help and I began, you know, some therapy and I began taking a low dose of
an antidepressant and, but at the same time really doing a lot of sort of, and I think stepping into
that platform, because with the M plus four, it was, I mean, I was kind of blogging this and that. So
I wasn't really, hadn't embraced that space. But I think it really was a kind of diagnosis. I started
running, which helped hugely. I really was a, I'd connected with people like, you know, Deborah
James and the real, just seeing how other people were living. And also, I don't know if you might
have heard the story. I've told quite a lot. So apologies if people have heard it, but what my son
said to me on the day of my third diagnosis, which I can quickly share, which was a pivotal moment. You
know, I'd had the phone call saying, you know, it's tumors in your breast and your lung. And the
triplets were in recept, wherever they were, five years ago, I can't remember, they were at school.
And Jake, who was 14, 15 at the time, came home from school unexpectedly early. And my dad was sitting
there with tears streaming down his face. My husband at the time, you know, it was, it was one of
those kind of everyone, you know, it was just one of those grim, grim moments were all in shock. Jake
arrived home from school, sent something was wrong, sort of went a bit white. He's very quiet,
didn't say much. So I said, right, Jay, let's let's just go for a little walk, walked to the common,
walked to the cafe, got a little hot chocolate. And I was kind of like, just calmly just trying to kind
of reassure him, explain. And I was veering between being kind of like, it's okay, you know,
it's gonna be fine. And to then feeling a little bit emotional, but it was just this, and he didn't say
much. And as we were walking back, leaving the gate of the common back to autumn, he just said, mum,
you've just got to live like it's not there. And I've shared this many times, but it really was I
can't overestimate how pivotal that moment was. It kind of really did stop me in my tracks,
literally and emotionally and spiritually. And it felt like a message from I've got to live like
I've got a, and it was a defining moment of, of finding a way of diminishing and shrinking the
impact the emotional impact cancer had on me. So I think that tied in with, with this idea of tapping
into my own potential, which I've always believed in. I've always had that kind of, you know, the self
help books, teaching by the bedside, but, but not being able to really, obviously, clearly not
filtering through, wasn't able to put anything into practice. And then the gratitude element,
you know, having reached that peak of just pure terror all the time. And I remember just buying
this postcard, you know, and sticking on my fridge, and it said, interrupt thoughts of
anxiety with gratitude. And that was, so it all sort of began to tie in at the same time. So that
limitless. So it was, yeah, so in a very, a much shorter answer to your question, the limitless_em
handle came about from, it's not that I think I'm limitless. It's more to serve as a daily reminder
to myself and that we all are fundamentally limitless. Doesn't mean there's going to be a
happy ever after for everything, but it means that we do have an incredible untapped resilience and
potential and that life can bring joy and it can bring magic. And it is going to be desperately hard
at times, but, you know, all just tied in for me. And it just, it was like taking glasses off. And, and
that's why in the last four or five years, despite some of the darkest, darkest times, I've, I've got
more access to joy now than I've ever had. I mean, I get euphoric over the sort of most tiny things at
times because I feel so, so grateful and that doesn't mean I float around on a cloud. You know,
this morning I felt quite low this weekend, a little bit flat, doesn't mean that I'm skipping
along. But when I can just have a little bit of a pivot in my mind. And that's my way of coping.
Doesn't mean I still don't find it hard to mention things that are niggling me. Doesn't mean that I
don't bury my head in the sand. Doesn't mean I don't catastrophize, but I've managed to find a way of
turning the volume down, you know. How do you live like you don't have cancer? Well, it's, you know,
right now in a state, as I've been, again, feeling miraculously lucky, I, that's quite easy to do
because I have my three weekly targeted chemo. But I see my, as far as I'm aware, sitting here this
minute, you know, my cancer is, there's not there, there's no sign of active disease, you know, my,
I've, there's, everything's been very, very stable for, yeah, five years nearly, which feels
like scary to say, but amazing to say. So I haven't had a scan for a long time because, you know, my
oncologist sees me every three weeks, my bloods remain stable and within normal markers and so,
you know, there's the, there's, there's, it doesn't, it doesn't mean the anxiety isn't there
in the waiting room, it doesn't mean that I'm, you know, and I celebrated recently, you know, my
hundredth, well, 99 hundredth-ish cycle as we're talking now of the drug I'm on and on, and I can have
one thought of how amazing this is incredible, here's to 100 more, or I can have the other voice
that goes, oh, well, that means it's going to stop working. But I had that thought at 10 cycles, 20
cycles, 30 cycles, and I'm very aware of what may and will likely or not happen. But it's really
difficult because I think there's this huge grey area when you have secondary breast cancer. You
can have secondary breast cancer and be terminally ill and very close to death, I guess.
But you can also have secondary breast cancer and be, as you say, living like you don't have cancer,
which you sort of have to reset your whole brain because a year and a half ago, I was told I had
secondary breast cancer and I was googling it and it was looking like sometimes you might have a few
years to live, you might be less lucky than that. And then my treatment worked and I had an amazing
surgery and now it's like my oncologist says, well, you're just going to live for a really long
time and you have to reset everything or all your way of thinking and also all those around you
because like you, I've put stuff on social media and so then people think that you're dying and you
just sort of have to think like every decision I make, I factor in cancer. So if someone asks me to do
something, let's say a job or a long-term project, I will think, can I do that? Do I want to do that
because I might not live as long as someone else might? And it comes into all your decisions in that
way, but at some point do you start thinking, like you said, I don't have cancer at all and just make
decisions normally? No, I mean, and it's funny, I don't even use the word cancer, it doesn't come
into my vocabulary again, not because I'm so above, it's because I still have a lot of
attachment to the fear of that word. So I guess the living like it's not there is something that I try
to apply to. It's sort of diminishing the attention on the unwanted and just shifting that
focus. So it's not so much, I mean, I'm very, very mindful of my vocabulary, so I still find myself
thinking, I've been invited to do quite an exciting event abroad in March, which I'm
pinching myself at it, how amazing. And I still think, oh, but still, the next thought is, will I
still be okay in March? It's not now, will I be here in March? Whereas even years ago, in the primary
years, my brain was so, I don't want to say, my brain was so dysregulated, I would go from being in my
mind from being fit and well to lying in a hospice, there would be no middle ground, it was like, well
dying. Whereas now, I don't think, you know, I think, oh, I hope everything's still okay in March
when I, or whenever it might be. So I'm very aware, I'm very, very aware that things can change at any
point. And never, you know, as like anyone, I don't, I'm very fortunate at the moment not to be
living within three monthly scan windows, but I still find that three weekly hospital cycle
sometimes very distressing, even if I know rationally that I'm pretty sure I'm doing okay
still. You know, because you still, in the week after that hospital appointment, I feel like my
mood sort of dips a bit, I'm a bit more irritable with the kids, I'm a little bit edgy. My
treatment's always on a Wednesday at the moment, so I find myself kind of looking at my diary that
week thinking, oh, what if my life's changed on that Wednesday night and Thursday looks
different? And then I come out of the, skip down the steps on the end of that Wednesday, and I think, oh,
I'm feeling this huge kind of appreciation again, and all as well with the world. And then the cycle
begins again, and I'm not comparing that at all to someone who's currently living between scans,
because that's a whole other level of extremes, extreme emotions, but it's just managing where
we're at and also having that compassion to not, you know, because just as friends who haven't gone
through a cancer diagnosis will say to us and put their very well-meaning word till their heads and
say, oh, but you know, I've been laid down with flu, but oh, it doesn't compare. I'm very aware that I am
in this good place, so I'm sensitive, I'm aware of that, but also can't diminish my own, gotta be
mindful that I don't complete your own experience as well, you know. Absolutely, yeah. It's not,
none of it is, all, you know. It's a lot. It's a lot. We'll go back to talking about social media for a
moment, because you've posted a lot about struggling emotionally, and your posts kind of
resonate not only with people with breast cancer, but with anyone, you know, with mums, with people
going through the menopause, with men, women, single parents. What is your relationship like
with social media? Do you use it for support and do you have to have breaks from it? The breaks I take
are normally when I just think, I just have nothing of interest to say, and I don't feel, you know, I
have to, I don't know how to show up unless I can be completely honest. I don't know if it's within
reason, completely honest. So I'm not very good at, unless I have to post something, you know, the
occasional kind of collaboration, I have to post something. I just, so I'll often have bursts of
being on all the time and really feeling all the goodness of that platform, and other times I just
feel I'm too bit too vulnerable. I do feel that Instagram for me personally has been incredibly
positive. I mean, you know, we have to watch how addicted we get, and I never want it to be, you know,
I try to make my, have other things going on, so that if Instagram disappeared tomorrow in terms of
work, in terms of anything, then I'd be okay, you know, I don't think it's healthy to just, but I've
just made the most incredible connections like I'm sure you have. I've been fortunate enough
never to really have much negativity. I wouldn't, I'm very thin-skinned. I don't think I'd cope if I
was getting trolled and getting, you know, I wouldn't want to look on tattle, for example. But
for the connections and the understanding and the feeling of, and I suppose I think I do, I do speak my
truth. So therefore, if, as in my emotional truth, I'm not confrontational, I don't get into heated,
you know, and I, but I speak my emotional truth on there as much as I can, and I, I think, I don't think
that can offend anyone too much really. Yeah. And speaking of making connections, you were close
friends with Debra James, who sadly died from bowel cancer in 2022. What did you learn from Debs?
She was a huge part of my mindset shift around that time that I was talking about with the third
diagnosis. I remember on the very day that I got the phone call from the oncologist saying that I did
have, you know, a new diagnosis. And because they mentioned my lung, Debs was one of the first people
I rang and I was crying and she just said, she was very calm, very immediately there for me on the
phone but said, you've got options, right? I can hear her voice now, you've got options, right?
It's like, they've given you options. Oh, yeah, they're options. Right. And it was just that kind
of, and then we went on to see how her, you know, last month's played out and those last couple of years,
it's like she just wanted options and that's what she talked about. And that again has helped that,
you know, I can have that in my mind. I can have her voice and wisdom and lived experience in my head
alongside my oncologist to when I've sat with him crying, weeping, you know, even in the last year or
two where on paper I've been well but emotionally in a terrible state, so very vulnerable in his
office saying, but what if I get it going on and he's like, if you do, we'll deal with it because we can do
this and we can do this and we can do this. So she taught me and many of us the importance of just
needing to just focus on the step in front rather than again, those of us who are prone to the
catastrophic, you know, thinking and also all of the wonderful things about Debs, the obvious, the
rebellious hope and the spirit and the ability and the determination to find joy and look for joy and
create joy. And that's not something that came naturally to me. Whereas, you know, the
spontaneity that she, with how she lived her life and that's again not something, you know, I've
felt like I always lived a very small life because I was scared of a lot or lacking in confidence and I
think over the last few years I have gone a bit more kind of, okay, you know, and, you know, it's not, I
think when the world is shaking you to such a point, it doesn't feel like a safe place. And when I never
describe my body as having let me down because I don't want to, but when things have gone awry,
where do you put, where's the firm footing so life can feel so fundamentally scary. And I think
that's again something that I'm trying to, that it's safe for me to be happy. Being happy isn't
going to trigger a chain of catastrophic events, which is how I think I used to always live. Even
before cancer. You sadly also lost your friend, Nikki Newman, who co-founded Secondary Sisters
Brilliant Group. Yeah. How do you carry on after a close friend dies from a similar illness to what
you have? Being a really tough time, 2023 felt tough, 2022 felt tough. It's, there's a lot and,
you know, around the time that Nikki died, those of us who knew her and even at the funeral and in the
conversations around that time, we were saying this isn't, it was acknowledging the abnormality
of living, you know, and I'm not in my 30s anymore, you know, I'm older than, I was a lot older than
Nikki was. But that feeling of even at my age, you know, it's not normal to be your friends and close
friends, distant friends to be dying. It's not, it's not normal to see another post up to see and to
be, have another funeral invitation. And we've kind of normalized it because that's the world
we're in. But I think that's what I think a few of us have kind of talked about. And again, it's so
comforting to be able to say, yeah, you know, reach out and do leave that tearful voice note saying,
this is messed up. This isn't normal. This isn't how it's supposed to be. So again, it's
devastating, but I think we just, these bright lights that are being taken from us, you know, I
think when you've gone through what we've gone through, we continue to deal with, we have to. It's
all a cliche, but we have to take some of what they gave because otherwise to not be doing them a
disservice, you know, we have to, you know, my way of giving myself a little kick is going, what would
Deb say? What would Deb say? What would Deb say? What would Deb do? What would Nikki be doing right
now? You know, Nikki would be looking up at the sky. Okay, it's not a sunny day today as we're talking,
but you know, so I think all, I think that's, that's the magic and the very, very, that's the magic of
all of this. Is that we're able to look at life with an intense appreciation and awareness of what,
what matters. Yeah, I think so. Yeah. I mean, that's certainly, I didn't know Nikki well, but
that's certainly what I took from, from following her on Instagram is, you know, an appreciation.
And, you know, also when, when someone sadly dies far younger than the average, it also resets your
thinking, doesn't it? I need to think, oh my God, I need to appreciate what I've got and the fact that I
am here and, you know, I can drink this cup of tea or read this book or whatever. So yeah, appreciating
life. So in 2018, you published your memoir, All That Followed, which was a story of cancer, kids
and the fear of leaving too soon. How was the experience of writing that book and how did you get
your publishing deal? It was a dream come true. It was, it was just a dream come true. I'd always
written, but I do, it was very much a kind of a bit of a buried dream and, you know, I've been blogging
like everyone else was in the years before that. I wasn't really on Instagram at that point. I was
writing a column for a multiple parents of twins and triplets magazine. I'd briefly had a column in
Best Magazine, which I always forget about actually. But so the book came about. It was a real
sliding doors of a bit of a Cinderella moment. I was working at the literary agency where I'm now a
client and I was working on reception, you know, wonderful company and it was a sort of quiet end of
the day on a Thursday. And one of the new literary agents came down and was kind of making
conversation on the desk and my colleague, he said, oh, I need some new clients. And my colleague
said, oh, it's a great writer. You should read her blog. And I sort of, you know, probably went bright
red because I was so timid at that point and not very good at pushing myself forward. And he was like,
oh, right. Yeah, send me your, send me your blog. And I did. I sort of, he went upstairs and I remember
looking in the link and then sitting there and going, oh, this is probably just ignore me from now
on. And he came down about an hour later said, wow, what a story and you write really well and why don't
you come up? Why don't you come and have a chat tomorrow? And the next day I went into work and went
and had a chat with him and he said, I really think this could be a book. And he took me on that day and I
wrote and I was lucky enough to get a book deal. And it was, it was from the happiest. I mean, I just, I
mean, and I haven't written another book since I've been trying so hard to write another book. I
dream of writing a book two and a book three and I don't know what it is the resistance. I think I'm
scared. I think I don't quite know that story just needed to come out. So it just tumbled out. Whereas
so much has happened again. And there's so much that I probably really couldn't talk about that.
Whereas I just, that just, it just poured out. It was like a stream of consciousness book really.
And I'm really proud of it. I just hope it's not the one and only, but if it is. Yeah, I mean, the fact
that you even wrote a book at the same time as dealing with cancer and having four children is
pretty amazing in itself and having other work as well. I mean, I was, I was nothing was going to stop
me because it was a dream come true. Yeah. And what about your, your brilliant podcast open with Emma
Campbell? Tell us about that. Oh, so that was a wonderful opportunity that came about. And it,
yeah, season one launched at the beginning of January 23. And it gave me, I'd always again,
everyone does a podcast and I'd always thought I'd love to do a podcast, but I wasn't really sure how to
begin. And I was approached by two producers who said, let's do it. We think you've got a lot to do, to
talk about in chair. And season five is out. And I just feel it's given me, it gave me such a lovely
focus during 2023 when things were still feeling quite emotionally difficult and challenging.
I've found an absolute, even more, it's reinforced that, that love and passion for
conversation and connection and, and hearing each other's stories and just holding space and
realizing how incredible we all are. And, you know, through the lived experience of whatever
we're going through, the wisdom and the nuggets. And so that feels like a real passion. I mean, I
absolutely have big dreams for the podcast. But, you know, whatever, again, what's lovely about
it, just like the book, it doesn't really matter because I'm giving it my all. Those conversations
are there forever. And that's, that's also enough, you know. Who would be your dream guest if
you could have literally anyone in the world? Realistic or not? Well, I've just had one of my
dream guests, the holistic psychologist. So Dr. Nicole Lepera, and she was on my vision board about
a year ago. So I've just recorded with her, which I can't, I'm kind of pinching myself. I mean,
someone like Gabor Marte, you know, there's real kind of mindset, you know, deep thinkers, I think
would be incredible. You know, real conversations about vulnerability,
authenticity, but also, oh, Joe Dispenza. Joe Dispenza would be my absolute dream. So the
neuroscientist and that whole mind body connection. And he talks a lot about, you know,
incredible stories of remission and healing and how it's linked, you know, how the brain can rewire
itself. So that should have been my number one joke. Dr. Joe Dispenza would be my dream podcast
guest. Okay, we'll manifest that for 24 perhaps. And tell us about that. You mentioned a Monday
morning mind reset. How does one reset one's mind when we're feeling a bit off? I think it's, and
again, recognizing when you just can't. So it might be that you need to kind of just write the day
off, you know, I've often, I've become quite good at, you know, if I'm really struggling or feeling
low, or there's things going on that I feel, or my body's just sort of crying out for rest. I
sometimes my body speaks and just says, just stop, you know, and so I will kind of almost take to my bed.
But that's normally, I'm not, that normally means I'm feeling quite low. But today I was just feeling
overwhelmed. I was feeling sort of grumpy a bit, like, like too much for one person to do all those
kind of domestic things. And I, I've really learned, sounds very corny, but I've really
learned to look up, you know, my bedrooms in the loft, there's a VLUX window. I kind of really make a
point of like looking up at the sky. I wasn't feeling I sort of my appearance, like I make, hence
the ridiculous amount of bright colors I'm wearing today. It's like I've become someone who
used to wear a lot of black and a lot of gray. But it might be the social media, Instagram influence of
pops of color. But I think it's important to me that I feel it always makes me feel better if I kind of
just make a bit of an effort or I put the dangly earrings on or the lipstick. It does it. For some
people that isn't the thing, but for me, and I know I'm not alone with that. It really does help lift my
spirit and makes me feel stronger and more connected with the with that limit the side of
myself and makes me feel like a sort of well vibrant person. So I didn't journal today, but I do a lot of
internal thank yous. You know, I kind of even if I'm washing up, I'll kind of like you say the cup of tea,
you know, I kind of tried to bring it back down to the moment. So the present moment of okay this minute
right now, I'm in my kitchen, it's a mess, but you know, how lucky am I and I really don't mean to sound
like it's all skipping, you know, I have many internal voices that don't help me and serve me.
But I always come back to gratitude. I would like to be doing more running than I'm doing because that
always helps with my mental health. And I can't quite seem to push through that but all of those
things. And you've mentioned a few bits of advice already like saying yes to things which I think is
brilliant advice and you've given some advice to the friends and family of someone with cancer. But
if there are any listeners listening today who have perhaps just been diagnosed with cancer
secondary or primary or and who perhaps also have young kids. Is there anything you would say to
them? It's hard because they, you know, anyone is it's going to be feeling how they're feeling and if
it's a very new diagnosis they're going to be feeling every understandable thought going
which is the worst case scenario the fear the what ifs the shock and it's recognizing that you're in
shock. You know when that diagnosis comes your your even if you were kind of half expecting it, you
know, it. That's the moment you're never going to forget but that moment does change and I always say
you know once you get onto the treatment pathway and you know what your routine is I think that's one
positive step where you think okay at least I'm on my way now. I always try to from the very first time
every time I've ever had treatment. I do always I don't ever want to see that my body's let me down or
my body's working against me I always try to think. Of my body is being a responder, you know. And
really really having a vision of myself. Being told how brilliantly I'm doing and how my markers
have down and how the tumors shrunk dramatically or you know how that you know when we sit in that
chemo ward which is such a frightening place but imagining that when you hooked up to the IV drip.
Imagining that what some people view as a toxic poison as a as a bit of a magical kind of you know my
body might respond my body knows what to do with this drug and this treatment. And then I would say
obviously do all of the obvious physical things of resting and but also. Anything that just takes you
out of those thoughts any kind of any positive distractions and also really really believing
there will be moments of lightness again you will have moments where you think. God this minute I'm
okay this minute you know and it's just acknowledging those and trusting that they'll
come and when they do happen just trying to store them somewhere. You know and I think because I
think that's what life is I think life is a collection of moments if we're lucky you know
knowing that in between there's going to be the tricky stuff. Yeah and what about talking to kids I
know your your triplets were very young when you were first diagnosed but you must have had some
conversations with all of your children over the years about cancer. Yeah with Jake first time
around Jake was six so it was very much kind of I think the book Mummy's Got a Lump or Mummy's Lump.
And he was in his Spider-Man costume in the kitchen and you know Olivia's but there'd been loads of
people kind of around and whispered conversations and so I sort of said I began like
that I said oh you might have noticed that you know. You might have noticed us having lots of quiet
conversations or Mummy's Got a Lump it's the classic thing Mummy's Got a Lump and a nasty lump I
think I said but the doctors are going to give me some really strong medicines to make the lump go
away. But Mummy's going to look a bit silly for a while I'm going to lose my hair and it really was
like that it sounds like a sort of textbook script. That was what I said I remember exactly and he just
went okay mum what's it really was what's for dinner. And I remember a month or two later when my
hair fell out and I was always you know I was always kind of self conscious about my bald head I didn't
embrace it and I'd sleep in this kind of when it was shedding and those funny little cap things. And I
remember one morning him sort of yanking I was changing the babies on the carpet and he was
leaping around and he yanked off this cap and we both sort of shrieked. And I remember feeling
really upset because I felt vulnerable it wasn't his fault I felt sort of bad for him. And then second
time around and third time around I think and with yeah I mean like I said I told you the story of when he
was 15 you know and his incredible insight and awareness and with the triplets they have no
recollection of course other than having seen photos for me because they were months old first
time round second time round. Again they were only four or five so they didn't notice that I'd lost
quite a bit of my hair they were nursery at reception and then five years ago. I would have
they knew you know oh yeah my mum is you know having surgery she's having cancer treatment they know
but they sometimes it's a little to be totally honest sometimes it's quite annoying because you
know they're 14 now and I go to the hospital every three weeks and sometimes I'm really knackered
and really kind of fed up and it's like you have any idea you know I kind of want to I could sometimes do
with a little bit more stroking. But no I think they view it as I think in a way I don't know if it's it's a
bit of not confusion but I don't think they're very connected with fear of me not being here and I
remember when because very lucky for them they've seen their mum living in the long term still being
mum managing things. Looking to all intents and purposes well and kind of okay and they see me going
to the hospital they see me come back. You know I remember when Deborah was you know really really
in those last weeks and she was on the news a lot and well that's your friend that's Deborah oh she's
gonna die and I said yes darling but I didn't think you died from cancer. And that was like wow they you
know and then I could think well have I not but I don't feel at this I don't feel like I've needed to
sit them down and say anything and I'm again very very lucky that I haven't and if that day comes then
I will but. I'm sure I'm sure there's buried emotions for them you know that will emerge. Yeah
there's certainly no point trying to try and I don't feel like I need they don't need to be living
with a heightened anxiety. I know that when if we find ourselves watching one of the. You know stand
out to cancer or one of those they'll notice a bit of a side eye and they'll be looking at me and they'll
be but they see me as as. As well and I find that when I'm talking to an anonymous audience so let's say I
could share my feelings quite openly sometimes on social media or on this podcast let's say but. That
when I know that close family are looking sometimes I feel a little bit. Unsure do your kids
look at your social media and when you're sharing really honest opinions about perhaps being very
down and depressed. Are they aware of that and do you ever sort of police your thoughts with them in
mind. Yeah I mean I've that it's a bit of a sticky issue so when they were much younger I would share a
lot more of the baby stuff and the kind of you know and I guess I was the mum with. The cancer and the
triplets and it was all a bit more and obviously I've become much more mindful of that they don't
want that occasionally one or slip through like with their recent birthday and I don't think
they've noticed that I just had to do that real. You know because I just kind of want to mark those
moments but I and occasionally I'll share them on stories and then I know it's gone but I I'm very
mindful about what goes on the grid in terms of my emotions. I think. I think they know they you know
that the Instagram is something that has led to some. It's been a very positive thing for me it's
also led to some lovely opportunities so they know that there's a link to you know in some ways of a
working life in some ways even just from what it's led to even if not directly. So I think they've
understood that I'm sharing a humaneness you know I'm not revealing too much I don't think about them
or their lives or you know and the stuff I do share that might be talking about the challenges of
parenting triplets will be on a podcast or be on a someone else's live and and I think well if the day
comes when they listen to a podcast they still going to hear how much I love them. Yeah of course
you know I hope. I would like to ask you the question that we ask all guests on this podcast which is if
you could see one change in terms of the diagnosis treatment or recording of breast cancer in the
coming years what would it be. Gosh I mean obviously it goes without saying that all
treatments and all advances available to all. I mean that just you know that's kind of so obvious. I
think more examples of people living in the long term you know more of the positive stories not just
within our community but in the in the in the media and kind of you know people being represented. You
know as living like living with what is is more and more a chronic disease for many rather than a than
a. A terminal one you know that would be a wonderful change and and I think a more deeply rooted belief
that life can can still continue and be and be big and full of possibility and expansion despite.
What on paper can seem grim. That would certainly help give a lot more hope to others so thank you for
that and how can people find you where can people find you if they'd like to know more about you. So on
Instagram as you said limitless_em and my podcast open and yeah they're the two two main sources I
think and open is on all the yeah all of the usual platforms yeah. And we'll put the link in the show
notes as well of course Emma thank you so much for joining us on the best cancer now podcast it's been
an absolute pleasure. Thank you it's been a joy. If you enjoyed this episode of the Breast Cancer Now
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