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're going to be talking about mental health. When we think about cancer, we often think

about chemotherapy and drug treatment and keeping ourselves physically well. But cancer

affects our mental health just as much as it affects our physical health, and it's absolutely

vital to find ways to cope mentally. And while oncology departments are focused on getting us

better physically, there is often a gap in the treatment of our mental health which can suffer

long after any physical symptoms disappear. So today we're talking to Professor Nazanin

Derakhshan, or Naz, founder of the BRiC Centre, or BRiC. BRiC, which stands for Building Resilience

in Breast Cancer, is an organisation that helps people who've had a breast cancer diagnosis to

feel less anxious and improve their quality of life. It's run entirely by women who have had a

primary or secondary breast cancer diagnosis, including Naz herself. Naz is a professor of

experimental psychopathology who specialises in cognitive neuroscience of anxiety and

depression at the University of Reading. And if you have no idea what that means, do not worry

because I don't either, but I will be sure to ask her. Naz was diagnosed with breast cancer in 2013

when she was in her 30s. When she finished treatment, she became aware that there was a real

lack of psychological support available, particularly at that critical time after active

treatment ends. She set up the BRiC Centre to apply her research into anxiety and depression to find

ways to help others using neuroscientific measures. Naz, thank you so much for joining us on

the Breast Cancer Now podcast. Thank you very much for having me. It's really nice to meet with you.

Thank you. You were diagnosed with breast cancer in 2013, about six months after me actually, and at

a very similar age. Could you tell us about your diagnosis? Of course, my diagnosis came

completely as a shock. I was diagnosed actually on the second of January 2013 and no family history,

no expectation of any sort to receive a diagnosis of breast cancer. I remember very clearly the

conditions, the room, the setting, and when I was told, this was prior to having MRI actually, but

the surgeon who saw me said, I'm absolutely 99% certain this is breast cancer. I felt like I was

distancing myself from Naz in order to protect her. So I remember my partner came through the door

and I looked at him and I said, Naz has breast cancer. It felt like I had been lifted from my body,

put on the other side of the room, and I would be the person now to look after Naz, to make sure Naz is

going to be okay. The first thing I said is how much time do I have left? It was a bit of a roller coaster,

but when you are going through treatment, you feel like you are positively doing something with your

medical team to combat the cancer. As you said earlier, when active treatment ends, you feel

like you are dropped, and that's when the challenges start revealing themselves and you

are on your own to a large extent. That's so interesting how you referred to yourself in the

third person, because I sort of had a similar feeling when I received my secondary diagnosis,

where I felt like I was looking onto my own life in a way. It's really interesting about distancing

yourself and calling yourself Naz, so that you sort of maybe distance yourself from the pain and

perhaps it's a coping mechanism, I suppose. It very much is. It's a traumatic experience and

we're not really prepared for traumatic experiences. They come when we least expect them

to. It's a bit overwhelming for the brain. The brain is there for a reason to protect us and the

distancing, the numbing, is a natural response of the brain to cope with the trauma. At the time, it

might be helpful, but longer term distancing or avoiding from the negatively laden emotional

experiences may not be very adaptive, but at the time, it's perfectly understandable and a

natural response. Just before we go into the science side of it, can you tell us how you're doing

now physically in terms of your cancer treatment and recovery? It's been nearly 10 years since my

diagnosis and it's been a bit of a roller coaster up and down. I've had a few scares along the way and of

course, scan anxiety is a huge thing. So, I've had moments of despair and moments of celebration.

I've tried to keep physically fit. I've tried to work because challenging your brain is quite good

for your health. I'm hopeful that I'm okay. Brilliant. Anyone who is listening who has also

had a diagnosis in the past and is currently well will know that feeling of celebrate the

milestones, but there's always that fear as well, isn't there? Exactly. So, can you explain to us

what you do at the Brick Centre for someone like me who doesn't know anything about neuroscience?

Okay. So, by training, I've done quite a lot of work on understanding the possible routes of

vulnerability to anxiety and depression and trying to find ways to target anxiety and

depression using interventions that are based on neuroplasticity. So, the idea that the brain is

plastic and it can change for the better. Of course, the brain can change for the worse as well,

but we don't want that. We want to be able to boost resilience through exercising the brain in ways

that is adaptive, it's positive, it's constructive and it's beneficial for the person.

So, you know, you kind of feel a bit more empowered about what you do. Now, we know that cancer takes

control away. You know, you kind of feel a bit less in control of yourself in terms of planning,

decision-making, what the future may bring, etc. So, after my active treatment, I felt like I was

going into clinical depression and self-diagnosis and I realised that

psychological support was not that very much available at the time. I know that now there are

some more conditions in place, but not enough. I realised that a lot of women, like myself, were

going through similar experiences and I started looking up the literature, the breast cancer

literature, to see what does the research show in terms of women's experiences, their coping

strategies, how do they find their new normal, how are they facing these challenges after active

treatment. And I was not entirely surprised to find that the literature was literally plagued

with studies documenting the high risk for anxiety and depression in women with breast

cancer diagnosis, well into survivorship. Then I started looking at the brain studies that had been

published on women with breast cancer diagnosis and I discovered that the literature showed that

the brain deficits as a function of treatment and diagnosis can last up to 25 years post-active

treatment. So, we are talking about damage to structure and function and it's not fair for us to

suffer cognitive deficits and be at risk for anxiety and depression. So, I actually started

some research, I got some money from the Wellcome Trust, I started doing some research on how I could

apply my work that I did prior to being diagnosed with breast cancer to a population in most need of

it, women with breast cancer diagnosis. So, Brick is a centre for research and practice of

resilience and I decided to use the word resilience because resilience is about change,

it's about adapting, it's about the art of adapting smartly to trauma and it's a very dynamic

thing. So, Brick became from the research and the aim to translate that research to empower women to

equip them with the tools they need to be able to face every day, you know, wake up every day, face

the challenges, face, you know, how they can cope better with, you know, the psychological cost of

breast cancer treatment and diagnosis. So, how do you actually help women or people who have had a

breast cancer diagnosis, do you meet with them personally, do you do trainings, how does it work?

So, with the research programme we recruit women to participate in our studies, for example, one of

the interventions that we have been using and we've developed and adapted works on boosting

cognitive efficiency and what that means that it exercises functions and structures of the brain

that are particularly receptive to, you know, brain efficiency and like the prefrontal

mechanisms of attention. Women suffer from lapses in attention and memory, they're not very

confident, you know, their self-esteem takes a hit, their workability is reduced. So, we have

embarked on a couple of projects to improve workability through improving cognitive

function and my previous work has shown that by improving cognitive efficiency you actually

reduce the risk for anxiety and depression and you can observe reductions in anxiety and depression

across time. Why? Because the communication between brain systems involved in cognitive

efficiency and emotion experience are strengthened. So, that's what the kind of the

research does in, you know, on that line and we've published our research in top journals,

peer-reviewed international journals like psychology. Now, the BRIC Centre has a

psychoeducational support network. We are at the moment currently around just under 2,200 women

with either primary or secondary diagnosis of breast cancer, any age across the UK. It's an

online network and we have daily activities where we engage our members in different types of

exercises and we also have breathing exercises and mindfulness meditation exercises. These

activities are supervised by myself and my admin team, without whom BRIC would not exist, do an

incredible job in monitoring posts, monitoring conversations and overseeing the running of

these activities within the online support network. We do have meet-ups. We meet up regional

meet-ups, we have Christmas meet-ups or summer meet-ups and honestly, our women are amazing.

They really make an effort to meet up and talk and have a day out, for example. But most of our

activities are actually online and it's a safe space. It's a safe place to vent, to ask questions,

to share, to celebrate and I've often referred to BRIC as a BRIC family. You know, we're quite a big

family but we're like a family and we have various projects that we run like the October month

project. We had on living hopefully. What does it mean to live hopefully? And we had quite a number of

women with secondary breast cancer providing short reels and short videos of what it meant for

them to live hopefully. I'm really interested. I don't understand a lot of the science of it. I'm

sure lots of our listeners won't either. But I know one of the things we talk about in terms of

treatment is chemo brain. So is that something that you look into in your studies and if so, is

chemo brain a thing? What is it? Why am I so much more forgetful now than I was before my diagnosis over

10 years ago? I can say with a lot of confidence that chemo brain is a real thing. The literature now

refers to it as cancer related cognitive impairment but chemo brain works for us. Yeah.

Brain fog. You feel like you're not as fast. You can't concentrate as well as you can. I mean a bit

like me. Sometimes I feel like I'm talking about something. Then halfway through, I've actually

forgotten what I've just said and I can see that people are probably thinking, what is she on

about? Then I have to try and remember what I've just said. The chemo brain should not be

dismissed. You know, chemo fog, brain fog. It's not just specific to chemotherapy. Women who've

done radiotherapy or just surgery can also experience chemo brain. Although chemotherapy

related brain fog can be more intense. If you consider the overwhelming amount of information

that we deal with at the time of diagnosis, that puts a lot of pressure on the brain with the

addition of the fears, the uncertainties, the scan anxieties, all the plans we may or we may not

put in place. Sometimes I feel like I've got a second PhD. It's like I've got a second degree. All

that stuff that you have to digest and keep on. Of course there's Dr. Google. We are capacity

limited. The brain doesn't have infinite capacity. In itself, that amount of juggle and as a

result of the trauma as well, the brain becomes less efficient as a result of that. Then it's

picking yourself back up again after active treatment. Get out there in the new world. Get into

what's your new normal, all the changes we have to go through. That's also pressurizing the brain.

The greater the expectation of people in terms of going to conquering the world, make the most of it,

you've been given a second or third chance, etc. The greater we are down there thinking, well

actually, you know what? I can't. I want to. But I'm not that person. I'm tired. I'm fatigued. I'm not

that person. And you long for that person knowing that it probably not come back, that older person.

And it's this new person which you're not quite sure who this new person is. Again, pressure on the

brain. And the greater this discrepancy, the greater the likelihood that you will fall into

depression, because you would think, well you know what? I can't meet expectations. I'm

probably not that good anymore. I've changed. I can't work like I used to. And so you start doubting

yourself. In this self-doubt also puts pressure on the brain, especially the functions of the

brain that have helped you make decisions in the past, you know. So chemo-brain is a thing. It

shouldn't be dismissed. It should be taken seriously. The effects can be subtle, right?

Like, you know, like lapses in everyday attention and memory, difficulty concentrating. But these

have profound effects in, you know, you know, on our daily lives. Sometimes you might think, well,

get on with it, you know, try harder. We are trying harder. We're putting everything we can. And in

fact, some of our work shows that women with breast cancer diagnosis, primary breast cancer

diagnosis, compared with non-cancer controls, their brain activity in completing a simple task,

a simple cognitive task, like that requires you to find whether some letters are congruent or

incongruent. What does that mean? Like, for example, if I give you a string of letters, like all

m, so all the letters are congruent. And then at times I show you, like, the string of letters of m

with an n that's incongruent. So you have to say whether the middle letter is the same as the one's

flanked on the side or is different. And they're kind of flashed up on the computer screen in

successive orders. So many trials of that, some are congruent, some are incongruent. When you

look at brain activity, you find that women with breast cancer diagnosis are recruiting from a

wider network and are trying harder to get the answer right, compared with women who don't have

breast cancer or the healthy, I don't want to say healthy, non-cancer controls. When you look at

their responses, whether they made more errors or not, no difference. Yeah. No difference. So if we

just look at performance, it's a bit misleading. Because we think, well, well, actually you did as

well as the non-cancer control. But when we look at the brain, we see a difference. I had to try harder

and recruit more resources to manage to achieve the outcome that you did with a little effort. So

it's like this one, the legs kicking under water and you just don't see what's happening. But

actually all of this stuff is going on in the background and it's working harder. So next time I

forget where I am mid-sentence, I can say, you know what, my brain is doing lots of really hard work

right now. So give me a break. Absolutely. Now imagine over time, if you're doing this for even

simple tasks, what happens to the brain? The brain, you know, kind of gets a bit tired, it gets a

bit lethargic. It's putting more in compared to what it should be doing. So you might be at a risk of

burnout. Yes. I, one of the things you said then really made me think because I think it's

something that can feel more apparent in younger women because I like you was, well I was diagnosed

when I was 29 and I was cured in 2013 when I finished my active treatment, which by the way I should

explain active treatment will usually mean chemotherapy and radiotherapy. So you may be

continuing with with drug treatment. So I went back to work and I was then well for nearly 10 years

and to look at me you would have no idea that anything was different because my hair grew back,

I was still in my 30s, I was exercising, I was going to work every day working full time, was fully

functional on the outside. But I would experience all of those things that you've mentioned and I

know that my brain had changed. But because people didn't have this expectation of me, it was like I

felt like I had to sort of qualify the fact that I felt I had to work even harder than how my brain was

working underneath because I had to prove myself even more because I was a 35 year old woman who had

overcome breast cancer, but I wanted to show that I was just as capable as all my colleagues and I was

tired and I was without a doubt burnt out at times. And yeah, I just wanted to acknowledge that I think

because I think it can be incredibly hard for women of working age who go back to work after a breast

cancer diagnosis or like me now living with breast cancer because your brain is working really hard

and I'm really glad that you've acknowledged that there's a scientific reason behind all that.

Absolutely. So it's real, it's legitimate and it has profound impact and being a younger woman is a

risk factor for greater anxiety and depression. The literature shows this, there was a meta

analysis that came out in 2020, it's published in the journal Molecular Psychiatry and the meta

analysis is a study where you kind of gather lots and lots of findings from lots of studies together

and see whether like the overall finding is a reliable one or not. They find that being younger,

greater risk of anxiety and depression. So this is an important issue and getting a breast cancer

diagnosis at any age is not a good thing. So we're not comparing older versus younger women but when

we look at the data we see that they are more affected physiologically, cognitively,

neurologically and performance wise. And if I've understood correctly from what you've explained

previously, all of that pressure on my brain is weighing on me every single day. What if I die, what

if I lose my job, what if I can't work, what if I've got no money, what is going to happen to my family,

all of that is building, building, building, making the brain work harder, is that correct?

Absolutely. The brain work harder but also, so the brain systems that are involved in emotions,

emotion experiences, they go a bit on an overdrive. So they're firing more than they

should be because of the worries, because of the concerns, because of you know the profound effect

of loss on your family, on your children, on your status, etc. So they weigh heavy on the brain and

those emotional systems, when they go on overdrive because we are evolutionary kind of

primed to survive, you know the parts of the brain, the functions that are supposed to regulate them

and say well you know what, it's going to be okay, you've got this, they actually stop doing that and

say they take a back seat and they say well actually you know what, your concerns are pretty real. And

so they take a back seat and then you get this constant overdrive of these emotional systems

and they weigh down, they weigh you down. This is so fascinating because I'm one of those patients who

when I see my oncologist or the nurses at the hospital, I'm the person asking but why, but why,

but why, about all the physical stuff, so you know what does this drug do, how is this drug going to

block my estrogen and how is that going to make the cancer not come back etc. But I've never had the

opportunity to sit down and talk to someone about what is going on in my brain, which actually has

been, it's a 50-50 really, you know it's as well, no it's probably more important than the physical

stuff actually. Absolutely and hormones also play a role when we talk about endocrine therapy

and tamoxifen and you know they're kind of like chipping away at the brain you know slowly.

Tamoxifen is a neurotoxic drug, it is a neurotoxic. What does neurotoxic mean that it

damages the brain? Yes, it has you know it kind of um through its effect on estrogen, ripping your, you

know estrogen is a very important hormone for the brain you know for vitality, cognitive vitality

you know and it's, it has a very good prognosis for preventing recurrence and metastasis but there

is evidence that it does have these side effects. When we talk about these drugs that block

estrogen, which in some people's cancer estrogen is the thing that feeds their cancer and of course

these drugs create menopausal effects and when we talk about menopause we talk about this loss of

cognitive function as well so it's all linked in doesn't it? Yes, absolutely. When we go through

treatment and we experience menopausal symptoms they're more radical than the naturally

occurring menopausal symptoms so especially for younger women so when you're, you are chemically

induced menopausal status you have a bigger impact of that on your brain so imagine like a sharp

you know hit to the brain that's a shock in itself for the brain and we are prescribed Tamoxifen or in

different types of endocrine therapy for many years post you know just finished mine now

Tamoxifen 10 years I finished and I have a review due with my oncology team to see where we go from

here and I'm concerned as well that what am I going to be put on do I continue with Tamoxifen do I stop

Tamoxifen do I am I going to be put on something else how are those side effects going to emerge so it's a

bit of an uncertainty for me and I'm a bit a little bit anxious about it one of the things you've

talked about is that You felt this sudden change in your mental health, you felt a sea, I suppose, when

you finished your active treatment, so when you finished your radiotherapy, chemotherapy. I, in

early 2013, finished my radiotherapy and that was when the real mental health impact came for me. So

that was when I found myself depressed for the first time in my life at 30. And everyone I've met

over the years has been the same. You know, so many people say that when they are no longer going to

hospital every day or every month or they're under the care of that oncology team, they feel

depressed or they feel anxious. Why is that? It's a profound question, one that is felt by lots of us.

You feel like your blanket's kind of ripped off you. You know, you feel alone, a drop in an ocean,

trying to swim, find your way to the shore, I say, on your own. You've previously had people helping

you swim, but now you're on your own and you've gone through a lot and you are, you have to face this

unknown person who is changing over time. You know, the new normal, I have a bit of an issue with

the terminology because I believe we are changing all the time. The symptoms, you know, the

diversity of symptoms that we experience. You're on your own, you're alone and you have to cope and

you think, well, you know, actually I don't have the resources to cope, but I should have the

resources to cope. And that's when you feel depressed. I also, it was after my chemotherapy,

then radiotherapy, I felt I was so looking forward to that last session of radiotherapy. The next day

I woke up and I think I literally cried the whole day. Where am I? What am I doing? What's happening?

Should I go back to work today? Should I? What? I was confused. And it is, you are out of that support

zone. You know, we're all vulnerable, but some of us are more vulnerable than others. And I think

that women need education and continued support. That's why there are centres like BRIC to provide

that for women. I know it's not possible on the NHS because of funding, etc. But it needs to be

recognised that, you know, many of us contribute to society. We need to get back out there. We need to

work. We need to raise children. We need to be partners. We need to do this, you know, and we need

to be well enough to do this. So we can cost the society, you know, economically, if

financially, if you just think about that angle, if we're not well enough to go out there. And then we

have all these kind of scares of, is it back? The migraine, the pain? So consulting our medical

teams, you know, all this patient, you know, I have heard many times complaints about, oh, you know,

this patient, we know her, we know him. They're always back here scared of, you know, signs and

symptoms, etc. So if we are, you know, if we have that support, if we have that psycho education and

there's nothing wrong, we're not weak. Everyone needs that, you know, we all need good level of

support so that then we can independently get out there and do what we can do to our best of ability. I

think a huge part of it when you, at that point when you finish treatment and you feel lost at sea, it's

also about other people's expectations because when you finish cancer treatment and you are

effectively cured, people think therefore that you must be fine. So it's also a think about

educating the people around us, including our employers, which is something that we're talking

about separately on this podcast, about what we need and that our brains aren't okay, that we're

going through grief, we're going through depression, we're going through anxiety, we've

had a loss, we, you know, we've got so much going on in our brains. So what would you say to someone who

is perhaps at that period now that they're finishing their active treatment, they're about

to maybe go back to work or maybe they're not going back to work, but they're at that really down point

where they're scared? To embrace the fears, this is the time we need to embrace the fears, embrace

the grief the loss. It is a loss, we have lost a big chunk of ourselves psychologically and

womanhood, physically, etc. And we, you know, it's interesting because immediately after

active treatment, you, you kind of like feel this downward spiral of depression hitting and then as

time goes by, that lifts and you become more anxious. So anxiety and the fear of recurrence,

metastasis then starts going up when you kind of feel like the depression is lifting, but then you

can move between the two because depression and anxiety highly co-morbid. What does co-morbid

mean? So they're very linked. So if, if you have anxiety, you are very likely to go through periods

of depression, so they can co-occur. And the, the idea is that don't demand too much of yourself at

that particular time. People will say things that will make you expect to be over the moon and 200%

energy going out there and doing the marathons mentally or physically. But meeting others'

expectations is not your job right now. It's about nourishing yourself mentally,

psychologically, loving yourself, embracing the fears, embracing the grief and going slowly.

You will go faster, but you'll know when. I think also just to add to that, that social media is

amazing. If you've had breast cancer and you are on say Instagram, it can be a brilliant community. It

can be a brilliant support, but it could also add pressure because of comparison, because you just

mentioned running marathons. If you're there, if you're in a down day, I am on an absolute roller

coaster and I go through massive, massive ups and massive downs. And if on one of my massive down

days, I go on Instagram and I see a fellow secondary breast cancer patient, for example, doing a TED

talk or doing a running marathon or whatever, that could easily have a worsening effect on me. So what

about our relationship with social media and how can we, should we avoid social media when we're

most depressed? I don't want to say avoid, because then you kind of feel a bit self-depreciative. I

wasn't able to digest that or people think I'm jealous or I'm not good enough or you know,

acceptance here is the big thing. And acceptance is hard because brain-wise at that time, we are

quite fragile. We don't want to accept the downs. I mean, it was very hard for me to accept the downs. I

remember when I went back to work and I wanted to work very quickly after my active treatment, I,

the worry about making a fool of myself in the lecture theatre made me even forget more things.

And I remember lecturing and I couldn't hear my voice. And I wanted to be like this award-winning

lecturer who's gone back and has managed to, you know, be on top of, but I wasn't. And I know at some

points, I very forget for perhaps, my students were amazing, they never said anything to that

effect to me, but it's a real thing. Go slow when you have to. It doesn't mean it's always going to be

like that. I think that's the thing. When we are on a high and we do have the passion and energy to

fulfill expectations, we think it's going to be like that all the time. And when we're in a low, we

also feel, oh, we can't stand it. It's going to be like that. This is me. That's it. I'm toast. I'm no

use. No. We change all the time. And that's the beauty of being a human being, is to embrace the

change, even if it is being in a slump, you know. People say, oh, well, it's the thought, it's not

you. But sometimes they say, well, actually it is me. I've been at home all day watching back to back

episodes of the good wife like I used to do, you know. And I've just finished actually. I might go

back and watch it again. But I know that I can't beat myself up about it. Even I know I shouldn't be doing

this. Be nice to yourself. If you have a broken leg and you're discharged from hospital, what is your

expectation of your leg? To run, to walk fast, to be, no. Do you demand it to get better really

quickly and, you know, kind of be, oh, why am I not getting bit quickly? Well, in that case, you don't

have expectations of others because people can see that you are physically injured. People can't

see we are psychologically injured. And that's when the expectation right. But you're nice to

your leg. You make sure it's seen to and it's bandaged. You don't battle with it and say, why

aren't you getting better? You're nice and you know with TLC, it's probably going to heal faster.

It's exactly the same with your brain. If your brain's fried down in the dumps, be nice to it. I've

often thought actually over the years of having cancer that when you say you've got cancer, people

immediately go, oh, oh, wow, that's that's the big one. And they immediately get it. But if you are

depressed or have other mental health issues, people don't treat that with the same level of

understanding kindness, acceptance. And if you have cancer and depression, you know, you have you

have the double whammy. It's just something that people people don't understand or treat. And you

know, we're beginning we're changing in the ways we talk about these things. But it's not it's not as

it's not easy. In the same way as you can say cancer and everyone's like, okay, totally, totally

understand, you know. Yeah. Yeah. And I wonder if we you know, we go back to the beginning of our

conversation when you looked at yourself and you said, you said to your partner now has cancer,

whether there's a there's an acceptance, there's an acknowledgement thing. So you talked about

acceptance, but I'm wondering about acknowledgement in the sense of me saying, Laura,

you are comparing yourself to that person. Laura, you are being unfair to yourself. Also, I beat

myself up when I'm not working enough or I'm not being productive enough. Whereas actually, I've

just had a massive operation. I don't feel like working. I don't feel capable. My brain doesn't

feel capable, even if my body does. And so it's acknowledging those things as well in order to

accept them, I think. Absolutely. Acknowledging them. And by acknowledging them, they won't be as

threatening. I think, you know, the literature shows that avoidance of, you know, trauma of

psychological pain is the biggest predictor of PTSD, post traumatic stress disorder. So

avoidance is actually a long term, maladaptive coping strategy. But facing, confronting,

acknowledging requires that cognitive efficiency we need, which we have lost. Embracing

is difficult. It's difficult to sit with the pain or to sit with, you know, I haven't had a productive

day, especially when we've, you know, we are competitive and we don't want to kind of be, you

know, known otherwise. But sometimes acknowledging a source of fear, acknowledging,

you know, loss, depression, etc. That is actually quite healthy. And that lessens the

catastrophizing nature of it for us. When you, when we say cancer, and people go, Oh, wow, you

know, it's massive thing. It's very much seen as a physical disease. So you've got like a tumor

somewhere or but cancer is, is a very much a psychological thing as well, you know, the mind,

the mind, brain and the body speak to each other, you can't separate the two. So it's, and there's so

much we don't know about cancer. So the psychological cost of cancer is harder to deal

with than the physical cost, I believe. So you conduct trainings and meetups to help women

affected by breast cancer to deal with difficult thoughts and anxiety. So I wanted to ask you about

three different areas that I know affect a lot of people in the cancer community, including me. So

the first one is scan anxiety or scan anxiety, which is spiralling thoughts before a scan. So are

there some tools that you could give to people to to cope with that? One of tools are attractive to say,

Oh, do this. And it's going to go away. Or what I would suggest is to take more of a prolonged

approach in beefing up your confidence, your self-esteem, your brain health, you know,

therapy takes time, you know, when you want to change something, you it needs to take time slowly

one step at a time. So if we engage in activities, daily activities that challenge our brain in

exciting ways in pushing the boundary, you will feel more empowered to cope with that anxiety. One

thing I'd say, quite bluntly, is that if you think about using something to eradicate a fear, it's

not going to work. Thinking, Okay, well, I'm going to get rid of my scan anxiety. It's not why, because

the scan anxiety, first of all, it's highly uncertain outcome. The anxiety is evolutionary,

they're the fear. So trying to kind of suppress that fear is goes counter to how we are made.

Evolutionary. So managing that anxiety is the way forward. Managing it, acknowledging it's there,

the outcome. I don't know what it's going to be, but I'm going to be prepared mentally. And there will

be a plan, we will be able to cope the best that we can. And worrying is natural in this sense, but

worrying about an outcome that I have very little control over, perhaps not so much. We need to

balance it. And acknowledge the fear, it's going to be pretty tough. Absolutely. I've had those

scan anxieties before. And honestly, sometimes I have felt I'm not coping properly. I'm looking at

the person's face to see whether I can read something from it prior to them giving me the

answer. It's normal, you know, it's your life, the impact on your life. So of course, your anxiety is

going to go through the roof. Yeah. My next one is thoughts of death and fear of dying. Now, I know

that your response might be similar, because as you said, it's a long process and there's

acceptance and so much more to it. But let's say, for example, you are a secondary breast cancer

patient like me, and you know that death is more likely or perhaps to come sooner. So are there any

things that you can do or say to help someone who is just having those constant, anxious, spiralling

thoughts of death? This is a very pertinent question, very real. And it's not irrational to

have those thoughts. It's very rational to have those thoughts. What I would suggest, and this may

feel like a bit of a cliche, but taking it, like they say, one day at a time, one minute at a time, being in

the moment and all, being in the moment is great. But if the moment is full of death thoughts, it's

probably not that great, so it's about, again, with the acceptance, but also think big, think

big, because what is happening there is that you're living in that head of yours, the thoughts

of, even when death isn't imminent, it is in your head. So I would bypass that and think big, what's

your next plan? What's the next big thing you want to do? Think big within the constraints that you

have. Can I challenge that by saying, I think that at a certain stage in a secondary breast cancer

experience, you're going to find it very hard to think big. So would it be better in some cases to

think small and to think, tonight I'm going to watch a TV program and I'm going to really enjoy it?

Or today I'm going to try and make it to the kitchen to make a cup of tea for myself rather than asking

someone else to do it and maybe think small or is that not what you're saying? That is the thing big

in my head, not the thing that I'm going to go do world travel. Things that you think, well

actually this is too difficult for me to do. Imagine if you're feeling depressed, you're not

particularly excited about that show or you're not particularly excited. What's the point in

making a cup of tea? What's the point? If thinking big is to kind of move out of that and make the making

a cup of tea big for yourself, it's a small thing in effect, like I'll make a cup of tea and enjoying it

on the sofa while I watch another episode of The Good Wife. But it's a big, make it a big thing for

yourself that you have managed to do this and you know what? It's pretty damn good. So it's sort of

about making bigger things in a smaller, in a shrunken world if that's the right way to say it. So

it's like your world has got much, much smaller, but think of things, moments that you can have and

things you can do that maybe you don't feel like doing, but maybe it's just about I'm going to get

dressed today or I'm going to have a shower which actually you never want that shower but when you

have it it can make you feel so much better. And make that a big achievement for yourself, feel proud of

it. It might seem little to someone else but it's a big in your head, it's a big achievement and by

doing that in successive order what you will feel is that actually you may not be able to go out but you

may be able to write about it and do the next big thing. How can I make this work for me? I don't have

all the luxuries that other people have but I can make what I've got within me so big that it can be

very impactful. I know that I can relate that to my own experience in that I had a big major operation

in January 2023. I had my sternum bone removed and that first day in the high dependency unit my big

thing was making it to the door of the room, a tiny little room. That was such a big thing for me was

just taking those three steps and it was a huge achievement. It was like being a baby who'd just

taken its first step. That's what I mean, think big within what you've done. When I was doing

chemotherapy I got sepsis three times and for me because I had to be separated because of the

neutrophils etc. For me also the fact that I could actually walk around the room and at some point

when I felt better I remember going to the roof there was a kind of rooftop landing in the hospital

and I remember sitting up there and thinking I've conquered it. I'm alive and I'm up here. This is the

best moment of my life and when I look back I actually get a bit goosebumps here. I feel like

yeah it probably was. When your life becomes smaller and more limited making a cup of tea or

stepping outside your front door is as big as climbing a mountain. I totally agree and

realizing that, being aware of it and embracing it and feeling good about it I think has the same

physiological reaction as getting to the top of Mount Everest. I mean all these years after I

remember going on that landing and I get goosebumps just speaking of it. So it means the

memory of that time is still very much alive in me and it's still having a profound effect on me. It's

not necessarily getting rid of the negative, getting rid of those dying thoughts. No they're

there, they're real but that's not the only thing there. We can have these other celebrating things

we're doing also there and in order to keep the balance you need both ends. So my third one is just

empty thoughts and generally feeling depressed and helpless or hopeless. What my suggestion

would be. I'm going to suggest something that kind of works has worked for me and I think that also you

know the literature, the research also backs this up. So if okay so I'm going to bring in a you an

example. If you say to someone who you know someone says I have empty thoughts um very low depressed

nothingness. So depression is quite usually associated with nothingness. There's no point

hopeless helpless. If you try and encourage them to think positive thoughts it's exactly like

saying to someone who has Alzheimer's disease to try harder to remember. The literature shows that

individuals with high levels of depression have blunted neurological responses to positive

stimuli. So it's not their fault they just cannot process positive stimuli like other people who

are not depressed do and if you speak with someone who actually says they have empty thoughts you

will realise that actually have quite a lot of thoughts that they can bring to conscious

awareness when you give them the time and space to talk. At times when we hear about empty thoughts,

emptiness it's a way of saying I don't really have anything to say you want to hear. Yeah. Another um

this goes back to some of the research findings that I'm going to touch on. When you have empty

thoughts it actually can be a coping mechanism because of all the pain for thoughts. Too much. But

you're not with empty thoughts you know you have lots lots of thoughts it's just you can't access

them or they're too painful to be processed and that's okay sit with it sit with it. I mean

everything you've just said completely resonates with me for example when I'm feeling

depressed if my husband says something to make me laugh it would normally make me laugh because he's

very funny he'll love that I said that but but on those days it won't make me laugh I'll just be you

know stony face sort of it will make me cry actually sometimes because I think why am I not laughing

like I normally do why am I not me and I I find myself apologising and saying I'm really sorry that I'm

like this because I'm not myself at the moment and it's that feeling of not being yourself you know

your brain is your brain is not working at that point and for me I get better and I've got highs and

lows. Yeah but yeah it's you've really explained thank you you know why the positive thoughts don't

work on top of that. What is the most effective tool you'd recommend people with breast cancer to use

to improve their mental health and quality of life after cancer or with cancer? Believe in yourself

believe in yourself the bards and the goods believe in yourself self-doubt

self-depreciation you know as a result of what's happened to you can take its toll don't shy away

don't run away from the hard stuff be there get help seek support but believe in yourself I think one of

the biggest things we're confronted psychologically is that we we lose faith in

ourselves we think well you know our body's gone rogue our minds have gone rogue we can't cope and

slowly we tend to self-depreciate apologize and you know think well maybe there is no hope maybe no

in the worst times there is hope and it comes from us not from an external so love yourself love those

injuries your your psychological injuries just as you heal your physical injuries love yourself

don't hate yourself I remember for a long time after my surgeries I had double mastectomy I

couldn't look in the mirror and identify with them I couldn't touch my rogue boob you know why why did I

feel disgusted with myself why did I not like no that's part of me and just like that your anxieties

your fears your grieving your you know your your feet you feel guilty you know it's all there you

know our emotions are adaptive they're there for good reason and embrace embrace the bad celebrate

the good and self-love is very important but believing in yourself that you can you know some

people say oh it's false you know what do they say blind optimism it's not blind optimism believing

yourself yeah Naz this has been absolutely fascinating and illuminating and I've learned so

much so thank you so much for joining us on the Breast Cancer Now podcast thank you so much for

having me it's been an honor and pleasure thank you so much if you enjoyed this episode of the Breast

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