When I think about me as a black woman hearing about someone that had cancer before I had cancer, it was, oh my God, so-and-so’s not well, they’re going to have to have chemo. I suppose within our community, cancer just means death.

Welcome to the Breast Cancer Now podcast, providing support and information to anyone affected by breast cancer. This podcast contains the personal stories, opinions and experiences of its speakers rather than those of Breast Cancer Now. Today, we’re talking about cancer in Black communities with Mara, who was diagnosed with triple negative breast cancer in her late thirties. With a background in mental health care, Mara is now dedicated to raising awareness of breast cancer and removing stigma within the Black and Christian communities. We’ll be talking about the BRCA2 gene mutation, triple negative breast cancer, and finding positives even when you’re dealing with the worst possible diagnosis. Mara, welcome to the podcast.

Thank you for having me.

So this is the Breast Cancer Now podcast, and we’re going to start with a few warm-up questions. If money was no object and you could go anywhere in the world on holiday or even to live, where would you go right now?

Right now. At the moment, I’ve got this thing about Japan and I’ve always wanted to go, but then I Googled it a few weeks ago, I realised that it had beaches. So now I really want to go because it’s got beaches. So just for the tech, for the beaches. And I think everything that I’d like could be just in one place. I just want to go and have a look.

I’ve literally just got back from Japan two days ago. So we can have a chat later about that. If there’s one thing from your life goals list that you could do now, what would it be and why?

I actually don’t know how to answer that question because I think my life goals are constantly changing. So I think my immediate life goal is just to be able to travel more freely when I want to and having the disposable income to do that. So that would be the only thing that I can think of off the top of my head.

Absolutely. And what brings you joy right now?

Trying to learn about myself. It’s a bit painful, but it’s bringing me joy.

Is there any learning that you’ve had about yourself recently that has made you particularly joyful?

I’m learning that my mind’s a bit more resilient than what I thought. So then that makes me emotional because I think I’ve not really had time to sit down and digest my personality and things like that, because I did everything so early. So I’m finding a sense of self now.

I love that. That’s really wonderful. Let’s get to know a little bit about your background. So you’ve worked in the NHS, working in mental health care. Can you tell us a bit about your work and what life was like in the lead-up to being diagnosed with breast cancer?

Leading up to my diagnosis, it was just quite a traumatic period because I’d lost my dad in 2022 to cancer and I then lost my grandma a couple of months after that. Then there were family elders, people that I grew up around, and altogether, I think there were about five or six, coming up seven deaths within a short period. Not traumatic deaths. People had really good lives and things like that. So it was a reflective period. And then my dog had died and then I got diagnosed. I think mentally I was just floating, leading up to things. So it’s just doing everything to get by. And then I was in menopause at the time as well. So I think that’s what I mean by finding my sense of self. I’ve been on a menopause journey since 33, which is long before cancer because I had a hysterectomy at 32. So I can honestly say, I think from that period, my life’s just been waves of so many different things. And then cancer just happened to jump on the wave that I was travelling on.

You’ve been through a lot in the last few years. And that’s also shortly after COVID as well.

Yeah. So I think it’s just, I suppose like it is for anybody, everything around that time, those few years ago, has just been compacted into a short… you know what I mean? But there’s just been so much content in a short period of time. And sometimes I feel like I need a ghostwriter. Then because I’ve had chemo and brain fog, a lot of things I actually don’t remember. And then I feel bad for not remembering things. And then I think, oh, do I not remember them because they weren’t that important? Or do I not remember them just because I genuinely don’t remember them? Or do I not want to remember them? It’s so confusing, being in my head sometimes.

I totally relate to that. And I think sometimes you forget things because they were traumatic and maybe they come back to you at a later point when you’re ready to process them.

Yeah.

But also sometimes you just forget things because chemo, menopause, scatty brain, loads of breast cancer drugs have a big effect on us. You were diagnosed with triple negative breast cancer. How did you get your diagnosis?

So strange. So at 38 at the time, I went on a holiday with my mum and my daughter. Before I went away, I went to have my medical review. When she was doing my checks and we were doing all my menopause things, I’d started HRT as well, and I’d been on it for about two months. When I went to have my medical review, everything was fine. And then she said that my right armpit was a bit more swollen than my left one. She didn’t think anything of it. Because we even had a little bit of, didn’t really brush on breast cancer, but we spoke about it because I did know people that had had cancer in the past. And because I haven’t had any smears because I had my hysterectomy, she’d said, “I’m going to send you to the breast clinic so you can get used to having mammograms.” That’s what she said.

First mammogram came back as… well, I had my first ultrasound actually. Then they’d found something. They thought that it was a fibroadenoma, is it called?

Yeah.

And the team that were looking after me, they were fantastic because they’d said, “It looks like a fibroadenoma. You’re 38, no history. You’re perfect. Everything’s great. We’re going to do a biopsy though,” because I think they looked at my notes and they went, “Oh, you poor thing. You’ve been through all this stuff.” And they said, “We’ll do a biopsy and keep it on file. So if it grows, causes you pain, anything like that,” because it was under two centimetres. And I think even when they called me back in to tell me they were shocked that they found it to be breast cancer. I think loads of women say, even though you don’t think you’re going to have it or you don’t think someone’s going to tell you, I think you kind of know, you just know that they’re going to tell you something. So I brought my god sister with me, my cousin, and she’s had an experience and she was just absolutely fantastic. I think, obviously, you do hear that, “I’m sorry, you’ve got breast cancer.” I was just like, the room goes weird, doesn’t it? And then everyone’s voice is down and you can see your mouth moving and you can feel a hand on your shoulder and it’s just mist, like bubbles. I call it bubbles. And I think what was fantastic is that I brought the right person with me to get my diagnosis, because then afterwards we came out and we’d sat in the car and then it was, “Right.” They said, “Do you understand?” “Yeah, I do.” “Okay. So you know what we’re going to have to do next.” And I was like, “Okay.” And she’s just fantastic. I can’t thank her enough for that, for my cousin. And that was what I needed, the right person. And I think, I don’t know, I feel like I had a little advantage of knowing that I went in there with an expert, but a personal expert. So I think I literally just went home and told everybody while I was making coffee, “Oh yeah, I’ve got breast cancer,” and da da da da da da. But I think because of the ages of the children, I don’t know if that was the right or wrong way to do it. But because I did it like that, I just thought, if we can normalise it. And then obviously I’m up and down.

So you can imagine having a hysterectomy at 32 and it pushes you into some kind of menopause and then you’re a single mum of two. I’m constantly raging. And then all that time before, I was fighting to get HRT. So you can imagine how up and down I was and really horrible to live with. It was very hard. And my eldest, she was at uni at the time. So I think I know, well, I know that it would have been difficult for her mentally with coming back and forth, not knowing what to expect either. But I think I literally just picked up every leaflet going in the cancer centre, brought it all home and just left it out and just, there’s free reading for everybody. We’re not that kind of family where it’s like, “Oh, come on, guys, let’s sit down and we’re going to have a discussion about this and a family meeting.”

We don’t do that, we talk about it. I think I was learning as much as them. So we all had an understanding, but I did feel very confused. I didn’t think that there was enough information out there for me to be able to explain it to them properly. I think because you’re just buffering everything for them. Do you know what I mean? Because you just feel like, my God, I’ve ruined everything for years already. And then obviously I think for me, in the back of my head, it’s them telling me about the gene and knowing that it can impact the children. And then I just think, why did I ask for them to tell me? Because what do I do with that information? There isn’t anything I can do with that information, is there? So I just know that I’m genetically disposed, but we already know that because I had cancer. So, yeah.

This is the BRCA2 gene mutation, which gives you a higher chance of breast or ovarian cancer and has implications for the rest of your family. What conversations have you had with your daughters about that? I know they’re 14 and 22 now, aren’t they?

Yeah, 15 and 22. My eldest one, around the time, I’ve given them all the information that’s available and then you can connect with the genetics team, and she’s a big girl. She finds her way and does that. And they know that they can ask. With my youngest one, she’s just being a 15-year-old. So we’re just leaving it there for her. When her time comes, she can look into it.

I think it’s a strange one with the gene because obviously, like you said, you let the family know, but what’s so funny about our families, there’s so many females in our family. And like I said, my nan had passed away and she was a hundred. So I’ve got all these aunties, seven or eight aunties. No one’s had not even a blocked milk duct or nothing. So it’s just so interesting to then know that on my maternal side, from doing my genetic bloods, they found that I had the BRCA2 gene. And I think it’s been difficult, but no one really talks about it. So it’s kind of like, it’s an annoying one for me with this gene stuff. Obviously when family members know that they have a gene, all of a sudden their scenario becomes more important than your cancer, because it’s like, need to mobilise because we’ve—

Then they’re worried about them, you mean, rather than you.

Yeah. Which is good because then also that’s what I wanted you to do. I wanted you to take it in chest and don’t just look at me and assume that nothing’s going to happen to you. Be proactive in your healthcare and as a female be proactive in your healthcare.

Before you were diagnosed, had you heard of triple negative breast cancer, which is what you’re referring to as TNBC ?

No. When I got diagnosed, my team had said, “We can do your bloods, genetic bloods, and that’s when we find out about the genetic stuff.” I said, “Oh yeah, that’s fine. Anything that’s going, I’ll have it.” Had that done, they said it would take 12 weeks to come back. So waiting for that to come back, got my leaflets and was reading the booklet. So I was like, I just want to know a bit more. So I started Googling and then I’m reading and reading and I’m like, okay, breast cancer. And then it’s talking about, what type of breast cancer have you got? And then it’s like, what do you mean? What type have I got? And then it’s just like, oh my God, are you really telling me that it’s an umbrella term? That is crazy. Why are you not telling us this? I know it’s a lot for the world to digest, but maybe it’ll be a lot easier on women if we had an understanding that breast cancer is an umbrella term and that there are types, because it’s only when you are diagnosed and you’re going through that horrible, painful, emotional journey of having to digest that information, it’s bad enough to digest the word breast cancer. And then you’re going to tell me what type of breast cancer it is. And then when you start to look into the types, for me, it was just horrible. Because then it was like, so out of all of the types, why have I got that one? Why that one? And then to try and find information about triple negative, it’s not as much out there as it is for the HER positive, the HER PAs, you know what I mean? So it’s stressful because even now I still don’t, even with all the advocacy and the things that I’m doing now, I still don’t know a lot about triple negative breast cancer. I’ve connected with the TNBC charity, absolutely fantastic, and done some work with them. And I just hope over time that so much more research goes into it and things like that.

I think as well, the only time I got scared is when we were talking about the treatment options, because then when I initially thought of breast cancer and they told me, “Go home, throw your HRT away,” so I couldn’t carry on with my HRT, which was a lot to deal with. So then I was reading up all the different things and then I started to feel so positive because I thought, oh, there’s hormone therapies. Oh, I can have this injection. There’s chemo tablets. There’s this, that and the other. And then there was like, “Oh, no, babe, you’ve got triple negative.” And then it was like, so what’s in my arsenal? And then it was like, oh, well, you can have surgery, chemo. You could possibly have radiation, but we don’t really want to give you radiation because if your TNBC returns, you need something in your arsenal for the future.

Luckily, my oncologist, because she has an interest in immunotherapy, I’ve got immunotherapy, but I’ve met so many women that didn’t qualify for it. And then I realised that I don’t think I probably qualified. It’s just because of who my oncologist was, is why I got an extra something in my arsenal. I had chemo and immunotherapy all the way through from the beginning. Then chemotherapy finished. I had my dual mastectomy, but still continued immunotherapy for 18 months.

Okay. So triple negative, you’ve sort of described what it is, but essentially, as you said, often we talk about oestrogen positive cancer, HER2 positive cancer, which means that oestrogen is the thing that feeds the cancer. And triple negative means that it’s negative of oestrogen, negative of the HER2 protein. So we can’t target the things that feed it. There’s no drugs.

But then I think what’s interesting about my case, what I used to ask my team was because I’ve had a hysterectomy, obviously that slows down certain things in your body, speeds up your menopause, but slows down other things. And does that impact in a way, you know what I mean? And I think that’s something that’s probably worth also exploring because from talking to some women that I’ve come across that have had triple negative breast cancers, a lot of them have actually had gynae issues and things like that in their past or growing up, teenagers. So I think that’s quite interesting as well.

Yeah, definitely. I know that a lot of people I’ve spoken to with triple negative breast cancer have said it’s really isolating because there are fewer treatments available to you. We do sometimes use this word aggressive to describe it. And when you hear that your cancer is potentially particularly aggressive, that’s just a horrible thing to hear because you can’t do anything about that.

But then it’s all this post-cancer stuff that I’m really, really struggling with, this post-cancer life. Because if chemo and immunotherapy have stripped away half of my DNA and I was well when you told me I had cancer and I feel weird in this new body that I’m in now and I have all these pains I never had before, how do I know when I’m unwell?

Right, yeah, I totally hear that because with me, I’m on so many different drugs now, both to control the cancer and to control the side effects of the drugs that are controlling the cancer, that I have so many different aches, pains, symptoms, side effects and things, that how do you tell when something is new or something to worry about? And then like how you were saying, things have spread, if you have a backache and if you say that, my back hurts all the time, my back has not stopped hurting. So, but that’s…

What does that mean? My arm is constantly aching.

But you’ve gone through menopause and therefore, a lot of these symptoms or feelings are very explained by, it can be explained by so many other things. Can I ask you, I know this has been talked about quite a lot, that Black women are more likely to be not taken seriously when we go to the doctor with a certain sign or symptom. Is that something you’ve experienced and is that something that you worry about?

It’s so weird. I experienced it with my gynae situation, but not with my breast cancer stuff. And I think, I don’t know whether it’s just because of how, I can’t even say it’s how we present because it’s like your pain is not painful enough. You know what I mean? Then I think, I suppose because sometimes we might be a bit more direct. So we’re not necessarily going in doctors crying and things like that, but sometimes you are going in the doctors crying and then they will still minimise your pain. Now post-cancer, I think my GP is scared of me. So my GP has openly said, “I don’t know anything about immunotherapy. This is all new to me. So when you’re talking to me about all these different things you’re experiencing, I don’t really know. I’m just going to send you back to oncology.” So now my pain isn’t minimised, I’m just dismissed and I’m pushed from one place to another.

So that is, I still think that’s maybe part of the process, so many things that need to change, but we are dismissed. And the amount of women that I’ve met from this journey, I knew that it was bad, but I didn’t know it was this bad.

Yeah.

I didn’t, because it’s every department. So I thought initially, maybe we were overlooked in maternity or we were overlooked in this area. But then it’s every area where, do you know what I mean? Any type of women’s health for Black women in general is just not the best.

And what do you think can be done or needs to be done to help tackle that?

People need to engage with communities more. Community needs education, but also there’s a lot of mistrust. Services need to engage more. The community needs more money. The community needs money. If you can’t get resources without money, we need allies, but we need allies to not necessarily always be inviting us out to come and talk and do these things. Allies need to come and meet us where we’re at. That would be really, really helpful. When you build trust, then you can get the information. When people trust you, then you will find out what is needed. You might find the things that you assume were needed may not be needed as much as certain other things because you’ve had those conversations and you’ve opened that dialogue. Somebody needs to do that. And we’re getting there, but we’re not getting there. It’s very snail pace, you know? So, I don’t know, it’s one of them ones where even for me, I do the things that I do so that someone else doesn’t have to.

How was your diagnosis received by your family and by your community?

It’s hard to get a good reception on something that nobody understands. And I suppose within our community, cancer just means death.

Yeah.

When I think about me as a Black woman hearing about someone that had cancer before I had cancer, it was, oh my God, so-and-so’s not well, they’re going to have to have chemo. That’s going to, you don’t know what that is. So you think that it’s going to take a lot out of them and that’s all you know. I think in the community, you just know cancer and chemo. And I think what’s so interesting, even now post-cancer, when I speak to my elders and people that are my mum’s age group who have had breast cancer, when you ask them about their journey, they just say that they had breast cancer. They don’t know. And then I’ll say, what type? And they don’t know. So I think as well, maybe the terminology is not explained to people.

One thing that I’ve noticed and I say to everybody, I do believe that when anybody is diagnosed with cancer, there should be onco-psych. I really believe that there needs to be an onco-psych team. Not necessarily a psychologist. I just mean mental health, like you could have a community mental health nurse there. Just like how the team knows when they’re going to get that patient in to give them that news because they make sure that so-and-so is available after lunch and to be in the room. Because you’ll have not just the doctor in there, it’s going to be you, whoever you bring, if you bring someone, you’re going to have that extra nurse and I’ll call them the there-there nurse. And you’ve got the there-there nurse for you, put the tap on the shoulder to tell you everything’s going to be all right and give you your leaflets before you leave. There needs to be someone there for your mental health as well. There really does need to be. Because even if you do not engage with it at that time, at some point you will need it.

For me now, I think that counselling therapy with cancer, it should come with my treatment. It should come with the treatment. You know that chemo and treatments are going to mess with people’s heads physically. And that’s not even going into the emotional side of having to digest what you’re going through. So why isn’t there somebody there to look after our heads? Why are patients paying for counselling? I don’t understand that because the first thing they’ll tell us is this treatment’s going to rock your head a little bit. So where’s the person for when it rocks my head? And you know it is because you know what’s in these medications.

Because there’s so much mistrust in the community and then because there’s so much stigma surrounding cancer, the treatments and things like that, a lot of people think that the treatments are a death sentence in itself. Some people don’t agree for you to have treatment. Some people think it’s not a good idea. A lot of people believe in eating it away, praying it away. I think all these things go hand in hand with your oncologists. And if you have a good oncologist, they will probably tell you to embrace everything if it’s going to help your state of mind.

You mentioned that some of your elders or some people in your community will equate cancer immediately with death.

What would you like to say to people now that you have had cancer? What would you like to say to change the attitude?

What does cancer look like? I think you can’t say something to everybody as a whole; that will be wrong. It has to be on a person-by-person basis or community by community, case by case, innit, as we say. I think it’s education.

Yeah.

And I think community leaders as well, because also, in churches, places where people are, those people aren’t educated either. So each one needs to teach one, isn’t it? So those people need to be educated so that they can put that out there to the community and then hopefully create the ricochet effect. And I think it’s just people that are well-informed can make good decisions, can’t they?

How have your Christian beliefs played into and interacted with your cancer diagnosis? Has it made you have more faith and has that helped you to get through it?

Yes and no. Yes and no. I think initially, like with all things, if you come from a Christian background, or if you come from a faith background, whenever there’s anything, trouble or strife in life, you go back to what you know, isn’t it? So there was a heaviness in the beginning to be God-focused and things like that. I did go to church a couple of times and stuff. I’ve slowed down on things like that now. But I think in the beginning, you do think to yourself, oh, maybe it’s all the bad things I’ve done in my life and the times I haven’t been nice, the times I haven’t been my best, and is this my punishment for not doing this? And so you challenge yourself and your faith a lot and then you lean into it. But I think as well with faith, if you have strong faith, you’re not supposed to have any doubts. I think I’m from a Jamaican background. One thing that we like to say is, we don’t ask Christ. We don’t ask him because he’s got it covered for everything that we need. So if that’s the attitude that I’ve been brought up on and that’s been instilled in me, I’m not supposed to have any fear with all of this. This is all part of the process, isn’t it? You’re supposed to have trials and tribulations, isn’t it, to come out the other end stronger.

But yeah, there were times that, God for who he’s worth, I didn’t really like him because I just thought, well, why? You do have your why me moments. And I just think, well, I’ve already had my womb whipped out. You’re going to take my boobs now. What else do I need to give you for me to have grace or favour or a good life then, so to speak?

And do you still question whether cancer could have been your fault in any way?

It’s okay. You don’t, don’t. Not anymore because I know what I need to know now. I’ve made sure that, because I do think as well for triple negative breast cancer, well from my personal view on my triple negative breast cancer, is that I believe for me to have saved my own life at the moment. I felt like I needed to learn everything that I needed to know about my triple negative breast cancer because I am my stats. If I sit there and read what the stats are, I’ll just go to bed and just wait to die. And I think that’s the hardest thing to explain to people around me and in my community. And that’s also how I know that even some of the people that I probably love and care about the most, I know that if I pop quiz them, everybody’s not going to pass. Nobody can empathise or sympathise with what you go through unless they understand what it is. And I’m not saying that they have to have a deep understanding. It’s not your subject for you to learn. But if you had a generalised understanding, and I think this is where we’re falling short with the generalised understanding about cancer, because then I’ve had people tell me, “I know someone that died of lung cancer,” or, “I know someone that had prostate cancer and you’ll be fine.”

I haven’t had lung cancer or prostate, I ain’t got a prostate. So then it’s just… I think in our community, we generalise the word cancer and nobody’s fussed about where specific in the body it lands. It’s just cancer and it’s bad. Do you know what I mean? And you might die from it eventually. It’s understanding the specifics of it as well and the impact. No one understands recurrence. There’s been times, I think sometimes I’m so off the cuff, and there might be times where I could be moaning about something and be like, “You stress me out. You’re going to make my cancer return,” and things like that. And people get like, “Oh, pull yourself together. You’re better now.” And no, we have to be realistic because if I phone you in six months and tell you, “I’m sorry, my bloods have come back and my cancer’s returned,” what are you going to say to me? People want to forget about it, but I keep it an active conversation because I don’t think they understand about triple negative and recurrence. So I am finding it very difficult. So at the moment it’s, let’s just understand about cancer. When we understand about cancer, we’ll move on to the nitty-gritties. And it sounds so bad, but that’s just how I feel sometimes. And I find it mentally exhausting.

I mean, that makes complete sense and it also makes complete sense why the people around you don’t understand because there is so much to understand. First you’ve got cancer, then you’ve got breast cancer, then you’ve got triple negative breast cancer, then you’ve got immunotherapy, then they’ve got the specific type of immunotherapy that you’re on, then you’ve got chemotherapy, then the specific type that you’re on, the specific reactions to those drugs. There’s so many things. And then you’ve got the BRCA gene into it.

And the BRCA gene as well, the gene mutation and then your previous surgeries and history and all the ways that it affects you. That’s so much for you to learn.

Mine has been so much for me to learn to then try and get other people to understand it. Sometimes I will say something to a person close to me about something and they’ll be like, “Oh, well, I didn’t know that.” And I’m like, oh, this is the thing that is so in my brain that sometimes you assume that everyone else knows it, but they don’t necessarily. And then you feel really bad because then also, I suppose, because it dominates your whole existence. Then sometimes you feel like a shitty person because you feel like there’s nothing else to talk about. Even I’ve had people say to me that since you’ve had cancer, you act like a victim. But yeah, I am, I do, I am a victim. If you don’t like it, go away. I’m a victim and I am traumatised, you know? And just because I’m not screaming and crying every day and sitting down depressed or because people see me going out and doing advocacy, I’m going out and doing advocacy because all you well people don’t want to go and do it for us.

It has to take for someone to get sick. And then I actually feel bad. I feel like a shitty patient because then I think to myself, it’s tough for you to get sick, to mobilise and see how much women need support in this area. As a woman, where were you? I do sit there as a woman and think, well, where was I before? As much as I’m out here now and doing all of these, I should have been utilising my voice a bit before. And I think it’s then you have those little moments where it’s just like, you don’t want loads of fuss, but also sometimes it’s like, is no one going to acknowledge how hard my body has worked to stay on this earth? I’ve worked really hard. It doesn’t look like it, because you’ve only seen me just getting in the Uber to go to treatment, but that was loads. For me it was loads and it’s massive.

I do strongly feel like a lot of people that know me will talk to me like I’ve just had a chest infection and I was put out for a few weeks, but I’m all right now, isn’t it? And that’s why I keep saying, what does cancer look like? Stop looking at me and assuming that I’m all right because I am very far from it, you know? And I’m not going to be better for a long time.

Well, I think that’s why you said that you were going to keep the conversation going and that you don’t stop talking about it. And I think that’s both brave and it also makes sense because you clearly still want to, you’re still in it. You’re still experiencing it and you still want to talk about it, but also explain it to people around you.

And I think that’s why my healing journey has been difficult because me talking about it, doing this, is perfect for me, it’s healing. Going into family, friends, my own community or other spaces, because I’m having to teach someone how to understand me, that is not helping my healing because my healing in my community at the moment consists of a lot of me having to explain and justify how I feel, how I act, what I say, what I don’t say, what I mean, what I don’t mean, whether I’m berating, if I’m not berating, do you know what I mean? Because also as well, my personality is different and everything about me is different and the world does have an expectation to see you go back to who you were, but who was I before? Then for me, it’s different because before cancer, I was going through my menopause, so I didn’t know myself. So I didn’t really have much sense of self. And then something else has happened to me and I’ve lost a bit more sense of self. I think for me, I’m very proud of how well I’ve done mentally because I’ve been through a lot in a short period of time. And I think I’ve done really well. I think I have anyway.

I mean, what you think is super important, but also you’re spending a lot of time and energy trying to explain things to other people, which is very important to you. But if that’s frustrating you, then maybe there’s also an element where you need to find people who already understand what you’re going through.

That’s the power of the community that you find with your allies. That’s what we were talking about, ambassador fatigue.

Yeah, exactly. But yeah, connecting through Breast Cancer Now with people in a similar community going through a similar diagnosis with triple negative breast cancer who can already understand what you’re going through so that you say these things and they’re like, yep, yep, yep. Head nods is probably what you need at the moment rather than head shakes or confused looks of people that just require more and more and more from you.

You can give each other space in those places. And I know that a lot of people will say to us survivors, when you’re at home behind closed doors, you’re a struggle, but you guys can go out there and talk to people that you don’t know and strangers and build all these rapports and networks.

Because it’s easier. Do you know what I mean? Because it’s easier because they’re meeting me where I’m at. No one has even asked me how I feel about my body after cancer. Do you know what I mean? And things like that after cancer, people joke about it and we’re like, “Oh, you’ve got NHS PPL. It’s like NHS free job.” And it’s nice to joke about it, but no one has to get in the shower every day and be me. And no one thinks about things like that, you know?

Yeah. And how do you feel about your body after surgery?

I don’t know, I look at my body clinically.

Yeah. That makes sense.

It does. So clinically, absolutely fantastic. In terms of the surgery, brilliant surgeon, brilliant job. She’s done fantastic. Obviously direct-to-implant surgery, no nipples. Yeah, she’s done fantastic. How Tamara feels about it, I don’t really know yet. I’ve looked at myself, but I don’t look at myself long enough, because I probably feel like I might cry.

Yeah.

Sometimes in the shower, I get teary-eyed, because that’s the only time when obviously there’s nowhere else to look when you’re having to wash yourself. So yeah, I haven’t got to that stage. I’m still trying to come to terms with the fact that I had triple negative breast cancer. I don’t think my brain has got to the stage of the mastectomy. And I think also I feel like I’m being rushed by the world to get over it.

Yeah.

And I’m just not ready to get over anything yet. Because I’m not there yet.

And talking about your reaction to your body clinically, rather than, I guess, emotionally or physically or just you-wise, suggests that you are detached from it.

And it’s so weird because if talking about it clinically, I could just do that now and be like, right, this is what she did. Because obviously, we’re a guinea pig all the time. So we’re used to being a pin cushion. So it’s nothing to just, do you know what I mean? We have no shame doing it at this stage in life. So to get everything off, even if I had to do it now, it just wouldn’t be a problem. But if you were to tell me to get it off in an emotional context, I’d probably ask everyone to come out of the room, ask for a towel, a dressing gown, do you know what I mean? And things like that. But yeah, clinically I’ll whip them out all day long and everywhere. I have literally no shame. I’ve been on the train and shown the woman and been like, “Look, I’ve had surgery,” and they’re like, “Ooh,” do you know? To talk, for me to, yeah, I don’t know how I feel about it.

You’re not there yet. So you said you’re from a Jamaican background and you’ve mentioned previously that there are differences in knowledge and education in terms of cancer between Black African and Black Caribbean communities. What are those differences? Is there anything that you can explain and how can we improve education?

I think there’s going to be language barriers. And obviously remember, Africa is a continent, you know what I mean, of many, many countries. So there’s going to be different language barriers. There’s going to be cultural barriers. And I do think culture versus religion as well, I think can be a big thing. Elders are another big thing and food.

Tell me about food.

So I think in our cultures, obviously we believe in really good diets and things like that. And we do know anyway from research, eating really well, having a healthy lifestyle and things like that. But I think in the Black community, especially when people get diagnosed, you fall into the, I don’t know, you fall into that territory. Even for me, just remember people just randomly messaging me recipes and it’ll be like, boil this, eat it with this, eat this on this day, on Tuesdays drink that, do this, juice this, boil that then bathe here. Do you know what I mean? So then you get really consumed and then it’s like, oh, eat all of this and then I’m going to pray for you and you’ll be fine.

And is the idea about that that you do that instead of traditional medicine, ignore what your oncologist says and do a natural therapy instead?

I think what I’m finding now that there’s more tech, it’s a bit more hand in hand because people are starting to learn more. I think they’re learning more because it’s becoming more common. When something’s somewhere when you can’t get away from it, the best thing for you to do is learn about what’s going on. I do think, especially because there’s also a lot more younger people getting diagnosed.

I do think now that conversations are opening up. But one thing I’ve noticed, there’s obviously a very big difference with religion, I think. So I’ve noticed that, even I live in a predominantly Muslim area. And when I speak to Black Muslim women, a lot of their worries are to do with, they believe that some of the treatments, medications, can make you infertile and things like that. So there’s a lot of stigma attached to drugs and things like that. Then also just becoming a social pariah because people within the culture, they think that you can catch it. Some cultures think that you can catch cancer from being around somebody. So I think because there’s so little education, people are getting better. But you have to drill it into them for them to understand.

With the Black community, I think, I don’t know, we always feel like we’re the world’s guinea pigs as well. And I think that’s a big stigma as well. Like, okay, you want to help us, but what for? You know what I mean? And nobody knows why. There’s a lot of questions and no one’s coming into the community. And I think as well, there’s not enough Black faces in those positions. So then I think, culturally, a lot of us do feel like, we’ve got other people that aren’t the same as us coming in saying what our communities need and what your data says, but how have you got the data if you don’t talk to the people and we’ve not seen you in the room with us? And then you’re saying from an outside third-party observation, you know what a whole community needs or what you think they need; they need based on data and not on people.

Of course within that community, we can’t just talk to all Black women in the UK because as you say, it might be Black African from one of however many countries and then Black Caribbean from however many countries and there’s so many different religions and backgrounds within that. Everyone needs to be talked to in a totally different way.

And that’s where I think education is the key. And I think each one teach one, if the education’s right from the beginning, the ricochet effect, make sure that the terminology is something that everyone can understand. Make sure that it’s culturally sensitive. Make sure that it’s explained in the right way. And then also it can’t just be a leaflet. It has to be a leaflet with a conversation, with a breakout group, with something else and then something else in the cup of tea. Do you know what I mean? And then build relationships because then also there’s so much everyone else can learn from us and they do. I think it’s starting to get better because I suppose there’s a lot more younger voices like us that can amplify, and then also you need people on the bridge to help explain.

I know that I can go to my great auntie and someone older than me or someone that’s my nan’s age group. And I feel from my own experience, I’m well informed that I can sit down and explain to them because I’ve had my elders ask me, why did you take the chemo? And that’s what they’ll say. Why did you take the chemo like it’s a person and you bring it with you, you know? But then, when I’ve explained to them and then explaining how cancer starts before it’s even specific to where it goes in your body, knowing that it’s a form of cells and that they can develop over 10 years, you know what I mean? It’s not just going to pop up next week. Like I said to you, a lot of my time is just having to break everything down to people for them to have a bit more understanding, but then also signposting them to the right places to get further informed.

And that’s why it’s really important that you’re here today with us talking. Hopefully lots of people will listen to this and will relate to some of the things that you’ve said. You’re also doing some work with Black Women Rising. Tell us a bit about what they do and what you’re doing with them.

I love them. They literally saved my life. So Black Women Rising is just everything to me. I’ve been ambassadoring for them since I’ve been diagnosed. So for me, while I was going through treatment, my main goal was, if you get well, you’d be able to go to a Black Women Rising meetup, and then it all stemmed from there. So my goal through my treatment, especially when I was having those hard times, was you’re going to get better and you’re going to go to this thing. And I did. I just fell in love with Leanne and Sharon and the team, Charlotte straight away, just everything to me.

Like you said, you just feel seen and heard. And I did the Younger Women Together before, and that was great because it was all my age group, but not enough people like me that were there. And so finding them was just amazing. Anything that I can do for them, I’m always there to help because I realised about small grassroots charities and how hard they have to work.

Then also, coming into this new world post-cancer and doing things like this, you realise that, I always assumed that there’d be government contributions and things like that to cancer because it’s cancer and everybody can get it. So then to find now working with some of the major charities and the smaller ones that it’s not, it’s people. And that’s just been absolutely wild for me. So it’s just opened a whole new world. And I didn’t think I’d fit, but it’s a club that none of us want a membership to. But honestly, if you’re thriving in it, it is the best membership. I would go through this 10,000 times over if it means that I end up in the spaces and in the communities that I have now because I wouldn’t have found them otherwise. I think loads of people say it though, isn’t it? It shouldn’t have to be about cancer, but I feel like it was the making of the new version of me.

Yeah. I mean, you’ve really explained how difficult it’s been talking with your loved ones about what you’re going through and getting them to understand it. And so I can see how a group like Black Women Rising—

It’s just changing. Honestly, it would help you so much.

What is the ambassadoring that you’re doing with them?

So it’s just obviously that we spread general awareness and then obviously we have our groups and stuff. We did a hike and stuff this year at the beginning of the year. And I think we’ve got our gala and things like that coming up later on in the year. And before I started today, I had a message in our newsletter with all the things coming up. So obviously there’s things coming up, but I haven’t seen them yet. So it’s just nice that there’s always, if you want to do something, there’s an opportunity to do something, which I think is amazing because obviously it helps you in your healing if you want to. It helps the charity immensely because any voice is a major voice. But I think, yeah, they’re great. I think all of the charities are great though. I think it’s just great how they hold space for us, you know what I mean? All of them. And it’s needed and I think we’re a little army of survivors.

And I think what I love about Black Women Rising, it sounds really strange, but learning about other cancers has been really, really interesting. And just to see how other people have been impacted by other cancers. Because I suppose when you have your specific cancer, you look for everybody in relation to what you’re going through, which is absolutely perfect. And I definitely advocate that for everybody because there’s no point, do you know what I mean, sitting in a room of lung cancer survivors, if you’ve got breast cancer, it’s not going to be the same. There’s only so far your conversations will be able to go. But what’s good about Black Women Rising is because it’s just for all Black women that experience any type of cancer, so the conversations that you get are much more varied and diverse and you do learn a lot from a lot of the women.

Yeah. It’s a community.

Honestly, 110, 110%.

What would you say to other Black women who might be listening to this podcast who have just been diagnosed with breast cancer and specifically if you have anything for triple negative breast cancer patients?

This is a shit time and it will get better. If you want a friend, come and find us. And even if you don’t want to make friends, still find us because we have resources that can help you, but come and find us because—

Being Black Women Rising, yeah.

Black Women Rising. Yeah, come and find us because we’re here. And I do always say, don’t let nobody box you in the corner. Challenge, challenge, challenge. Ask if you know that you’re a quiet person or you’re more of a reserved individual. There’s charities like us, Black Women Rising, but there’s also From Me To You. They offer advocacy. You can get a buddy to go to the hospital with you. If you want help, I’m a parent. I don’t know how much I can help, but if you want help to break that down so that you can explain it to your children, we are there for that. We have to look after each other. So yeah, that’s what I’d say.

And to finish with the question we ask everyone on this podcast, what’s the one thing you’d like people to take away from this episode?

The one thing I’d like people to take away is just understanding how complex cancer is. No one size fits all. Everyone’s journey is completely different. Everybody is traumatised even if we don’t say. And for anybody that is diagnosed, surviving, has the best news, has the worst news, just be kind to yourself. We’ve only got this one life and let’s try to do some, try to do good with it. And I mean, not necessarily good in the world. Sometimes doing good in the world is just being kind to yourself.

Absolutely, fantastic words there.

Thank you.

Mara, thank you so much for coming on the Breast Cancer Now podcast. It's been absolutely brilliant and I think there's just so much stuff people will get out of this episode.

Thank you so much.

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