But you you've just told me you've been poorly, but the doctor said put up with it for another two weeks. You know your body. You know if how ill you feel it that they can't take that away from you. So I would just sit and say this is what I want.
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's guest is Jay Tatler, a cancer genetics scientist and clinical trials expert. Jay was diagnosed with breast cancer in 2018 when she was 47 and she's since thrown herself into raising awareness and helping to increase representation and health literacy for women and particularly for the South Asian community. We'll be talking about self- advocacy, health literacy, and empowering women to have more control and ownership over their health. Jay, welcome to the podcast.
Thank you for having me.
Hope that was an okay intro.
Fabulous. She made me sound like a superstar, which I'm not.
[laughter]
Well, we're going to start with a few warm-up questions. So, if money was no object and you could go anywhere in the world, whether to live or just for a holiday, where would you go right now?
I'd go back to San Francisco. I lived in San Francisco for a few years. Best time of my life.
We talk about bucket lists and the distant future, but if there's one thing from your life goals list that you could do right now, what would it be?
Stop working round the world tour.
Oh, love that.
Would you ever go and race across the world?
I actually love that program. I do. The problem is my daughter say I don't think I could rough it. [laughter] 20 years maybe 20 years ago I could have roughed it. But just the whole concept of just different people, different foods, different cultures.
Yeah. Just go. Brilliant. And what brings you joy right now?
Just being my life, the sun. Simple things, not very complicated things.
Complete the sentence. I will never...
I will never stop.
You will never stop what?
I will never stop being me and doing what I do.
Well, we're going to get to know you and what you do in a moment. So, you have a PhD in cancer genetics and you work in clinical trials. Can you start by telling us a little bit about what you do in layman's terms?
So before drugs are marketed, so before a patient can receive them, they have to undergo safety testing. So let's say pharma company A, they will develop a drug, they will test a drug. So it has to be tested in healthy volunteers, but most of the clinical trials are for are for cancer meds. So they go straight into the cancer patients. So before they can be licensed, we have to do safety and efficacy studies. So what I do for the pharma companies, I prepare their paperwork for the MH, which is like the government body that controls licensing of drugs and ethics committees which protect the participant. So I prepare the paperwork, I'll write the patient information sheets, the consent forms, if you've ever been involved in a clinical trial, when you're handed a leaflet to read and you sign off at the end that I read that and I prepare. I'm basically a an administrator, a paper pusher, but a different level. But you have a lot of contact with patients themselves. So, no. Oh, okay. So, it's like we will get we'll prepare the paperwork, we will get the approvals, we find the NHS sites and that is where the sites and the medics take over.
Got it.
So, all the runup that's needed for them to recruit their first patient into a trial.
Okay. Awesome. And you've been working in that industry for a while, but in 2018 you were diagnosed with breast cancer yourself. How did that diagnosis come about?
[sighs] I was working in clinical trials. I'd just stopped to go work for myself and I'm very health conscious. It's just because of what I've worked in all of my life. It was no cancer history. Just been to a spin class actually. Came home, was in the shower and felt a lump. Felt it again and it was real. I knew straight away it was bad. I mean, I had that was just gut feeling at the time. Rugs pulled out from under your feet. again, it's a feeling it's quite visceral. Even when I talk about it now, you know what how that felt in that moment.
So, did you immediately think cancer even though you didn't know that?
100%. Went to called my friend, went to a local walk-in centre and they put me on the cancer timeline, you know, the two week as it was back then. I was fortunate enough to have private healthcare. and it was Easter weekend. That is what I will always remember. I went into the hospital on day before Good Friday to the walk-in and I had four days to get this around my head. Not burst into tears in front of my daughters who were nine and 10 at the time. Not panic and that's all. I don't think I slept for 4 days. We came into London. We did loads of stuff because I had to be distracted. went in on the Wednesday again one-stop shop clinic where you go in you speak mammogram ultrasound and my ultrasound was done by a radiologist and she's been doing you know she's got 20 plus years’ experience and I just asked her you know can you see from the morphology if you know what it looked like on the screen if it was benign or malignant and she goes I would say with 99% certainty it's malignant But for me, the saving grace was the tumour. I had two tumours and the one that was underneath was far more aggressive than the one that I felt.
Right.
So, you just found the surface, but actually there was something there's something a little way more insidious underneath. No breast cancer history. So, we just started she just started going through, you know, biopsy, test, scan. You know, I complained about a shoulder pain, then PET scans because they think it's metastasised. So, it's the you're in this world of appointments, testing after testing. We didn't tell the girls straight away because we wanted a definitive diagnosis before we told them. Best case scenario was a lumpectomy and maybe a bit of radio and you walked away from it and they would be none the wiser. They were quite young. Worst case scenario was mastectomy you know chemo radio losing your where you can't hide from you know the physicality of the treatment that you're going through. It the news got worse and worse I think as each test result came in. we told them my eldest was very pragmatic. She was like, "Okay, I've seen the Breast Cancer Now leaflets, mummy. Loads of bits of pink paper lying around on my desk." And so, I know you've got cancer. Can it be treated? And to her, I said, "Yes." I mean, like, of course, what else do you say to a 10-year-old? But my 9-year-old was, "But mommy, people die of cancer." So, no, mummy's going to be fine. It actually helped having children because you have to keep yourself together. You keep your bleep together because you can't fall apart in front of them. Telling my parents was really hard as a mother. Telling I knew how I would feel. it was it was really hard. I mean, I'm I left home at 18. I'm very self-sufficient. Don't ask for help. Not because I don't need help. You find a, you're a solutions person. But I knew I was going to need help. The cancer journey you can't do alone. Yeah. And you have to get used to asking for help. My parents were it's not that bad because that's what everybody wants to think. And it's like this is bad. It's going to get worse and you just have to this is what we're going to go through in the next 12 to 15 months.
But it hadn't metastasised. It hadn't spread.
It hadn't spread. Well, it was in my lymph nodes.
Yeah. Okay.
It hadn't spread. It was stage it was a stage three diagnosis. Hadn't gone beyond my lymph nodes. it was it's actually really hard. I can't it's a lonely journey. I think I always say this you I had all the support. I have I had my village. My oncologist was fabulous because he knew what would reassure me and he would give me scientific papers, statistics, data. This is why you're doing this, this is why we're doing this. So that kept me calm, but you went into it I went into it like a soldier preparing for battle essentially. yeah, day at a time. Let's go. But night times were hard because that's when you when I could, you know, that's when I would well a I haven't slept properly. I was a bad sleeper and giving up Tamoxifen is going to be easy. giving up sleeping pills. That's I don't know how I'll address that in three years time. But that's when I would cry. That's when you face the it's fear. You know, we I mean we talk about death a lot in my family now because it's something we all ignore. You know, we're born, therefore we're going to die, right? It's not complicated. It's a very simple process. But in my community, you don't talk about death. It's not you kind of bring death into the house, right? If you talk about it or you mention it or you know what do you know how would you like your funeral? You don't have these conversations, right? Whereas now the girls know exactly what I want at my funeral, how I want it to be, and it's not it's not going to be a traumatic event for them. you know, you know, hopefully they it's not it's a long time off into the future, but just that preparation, that anxiety of it all. some family members when they were told it was she's been a bad person, you know, karma's come back to bite her on the backside. so there there is all of that kind of subtext. you know, I used to go to my parents when the girls finished school over summer when I'd have chemo. I'd stay at my parents house and family members would want to come see you. It's almost like they're mourning you already, but you know, but it's like I I'm still here. It's I'm not giving up, but it's I kept my circle really small. I learned to say no. It's like don't want this person. and I don't want to see this person. I would have people that I hadn't spoken to like five, eight years and you know and they'd call me and it's like well you haven't missed me for five or eight years and I know that may sound I don't know silly on my part but I didn't want to talk to them. It was you know I had two particular friends that you know did everything anything for me and for those two I can't I'll never pay the debt off you know for what they did for me you know take me to every chemo look after my kids feed me wipe my tears and there were a lot of tears but uh I think crying is good I learned that during chemotherapy I from being a non-cryer to like crying at anything. Now I learned I learned to be a child again, I suppose. Yeah. I'm the eldest of six. So I'm always I've always been the third parent, right? So you look after your younger siblings, you do all that. But I came back to being a child with my parents, you know, my mother especially who is, you know, rockstar saint. I can't this will make me emotional. I can't put the price on what my mother did for me. How she looked after me, how she fed me. And how from being the strongest child, I became their most vulnerable child. And I think in some ways I still am the most vulnerable child. it changed them I think. Yeah. you know we weren't a very demonstrative family on for my parents and now it's you know I love you. I'm proud of you. You know well it's all of that. It's so lovely though that cancer has helped contribute to making that happen. Yes. I mean their good does come out of bad, right? So, you know, they're they were always aware of their health and you know my youngest sister's a nurse, you know, I'm a scientist by training and so it's they've always been surrounded by people that, you know, their children were that way inclined. You know, have you done this? Have you know, did you do your poop test? Oh, mom, did you let us come through for this? So you know they were good but you know we don't so I'm Sikh by religion there is no Punjabi word for breast really there's a Punjabi word for chest and I've asked loads of people there isn't a Punjabi word for breast so it's you know it it's not talked about you know don't even literally don't vocabulary exactly so you can't kind how do you normalize a conversation when there is no word in order to have that conversation. And I think it's and I don't think it's just the South Asian community when women just women in general, they run, you know, they run their house, they go to work, they look after their families, they always put themselves so far down the list. And if uh another positive from cancer has been selfawareness about self-care, how am I supposed to do A, B, and C, wear those different hats? Well, I don't take time out for myself. I always used to feel selfish, lazy. Nobody put these parameters on me bar by myself. You know, you're your own harshest critic, I suppose, in that regard. But I take time out for myself. I do what makes me happy. when I'm done, I'm done. I will spend weekends in bed because I'm tired. Yes. And I don't feel guilty about it.

No, you shouldn't.

Yeah, I'm the same now. And I actually do still feel guilty. I'm very much a put guilt on myself person. I don't know where that comes from. Probably need some therapising about it, but yeah, I didn't feel well earlier this week and I just decided to rest. But it was so hard for me to just rest. Like I'm one of those people. you're the same. You do a lot of stuff. You know, you're the mum, you're the worker, you're everything. It's a struggle. Give yourself a break sometimes.

Yes.

And I think we can physically rest. You can stay in bed, but trying to quieten the noise up here, that's a lot harder.

Yeah. Exactly.

So, but you know, a work in progress and therapy, like you say, [laughter] and podcasts.

So we'll go back to some of the things you said there. you covered quite a lot of a lot of things. but I just wanted to ask you so you worked quite a lot of well you have worked for a lot of your career in cancer research. What was it like then becoming the patient and going to the other side of it?

So that was a great advantage for me. Okay. because I was informed, I knew, you know, you still read papers, you still keep up with it's a habit that doesn't kind of like going away. I you know my reading material is just journals, scientific papers, publications. You keep up to date as much as you can. I wasn't afraid to ask questions. I didn't consider no question was a silly question because the more the more information I had, the more empowered I felt and the more control I had because cancer takes away control, right? You're just on this like production line of tests, treatment, and there are other people in front of you, behind you, and you're just one of many. But that was how I had my control was asking for information. Why are you doing this? But why can't I have this? Oh, you're too old for that. You're blah blah, you know, all kinds of and that helped me. I would go in with I would have a notebook. I still got that notebook where what about this? What about this? Why am I having this? Can we not do it? Do I have to do chemotherapy?

Do you think that you got better potentially better treatment and better outcomes because of your knowledge and asking more questions and pushing for things?

I think it helps, right? Because you see I mean at this side of my the journey that I where I'm at now I see so many people who are very articulate educated well read but they will go into their GP and then GP will say give it you know whatever the issue it doesn't have to be cancer give it give it two weeks if you still feel like this you've come to the doctor after about 3 four weeks of you know tolerating and saying okay maybe I should go look at this but you say okay yes doctor and they walk away again and I will look I said but you you've just told me you've been poorly but the doctor said put up with it for another two weeks but there is no buts I think you know your body you know if how ill you feel it that they can't take that away from you so I would just sit and say this is what I want no I don't want this I will go in I go in to see my oncologist every 6 months now and I want to stop taking I'm oestrogen positive breast cancer I want to stop taking tamoxifen and he will we will have the same conversation and we will come out but the outcome will be the same it's like no you need to take it for 10 years okay you've haven't had a break for three let's have a three month holiday but he will give me the data and information and the reasons why this is happening why there's no alter alternative or yes there's an alternative to help you with the sweats now which is better than the oxybutin that you've been taking for the past five six years. So, you ask the question, but you can't ask the question if you don't have the information, right? It's that circle. and again, I'll refer to my community. Doctors are kind of on a pedestal. I mean, I think in pretty much all, you know, if you every community, right? You know, doctors are on a on a pedestal. But, you know, I'm not saying they're not perfect. you know, and we understand we understand the resources and the stress and strains that the NHS is under, but surely it's better if that person is treated earlier. Screening is done earlier so we're not spending all that time, money, effort on treating a stage three, stage four breast cancer. I was an awkward patient. [laughter]

I think I am as well. I asked a lot of questions. I think that's the only way to be. Yeah.

For me, it's understanding. If I can understand something, why what a medication is doing, then I feel a bit more in control, I think.

Exactly. I think it always goes back down to control. And if you know what it's doing for you, the positive, then it's like, okay, I'll take it.

Exactly. Yeah. You talked about talking to your parents. Well, first of all, you said that cancer is the unsaid word. And then you said it was really hard breaking the news to your parents because you knew what it would be like to find out that your child.

How did you approach the conversation telling them that you had been diagnosed?
Physically went over to see them. This wasn't a conversation over the phone. That was the first thing. mom was washing dishes at the sink. Asked my dad to come. He sat at the kitchen table and I said, you know, I've had a biopsy, found a lump. it's cancer. It's going to And it was just tears. I think it's quite emotional. it the vulnerability I think of it was quite hard, but it's because again, the association cancer diagnosis went straight to the extreme, right? Uh, oh my god, my child's going to die. they were my mom. I can't I can't talk enough about my mom. Complete rock. she fed, watered, bathed me. My dad, he was lovely. I mean, he still is lovely, [laughter] but he was so emotional because I don't know how a parent processes that because I don't know how I would process that if that was my child. so that gave me gave me a lot of insight. I was I didn't react to their bad reactions. It's because there's a part of you in your head and I'm sure you've had it. Will you stop crying? This is not about you. This is happening to me. but they were Yeah. No, they were okay. They were good. They didn't I think when I told them it was I think it took him a couple of days to fully process it to be honest. and then the tears and then the fears and then the texts come, you know, I love you. You know, you can do this. God gives this. My dad, he would constantly send me memes and I don't know, whatever things that he finds. God gives the hardest battles to his bravest soldiers. All this kind of inspiring talk that he wanted me to like take on board. But how did you feel about that? [sighs] It made him feel happier. You don't have time to think about that because it again for I think you have to focus on yourself. I couldn't worry about other people. And I remember saying that this is I don't want to worry about you being upset. I don't want to worry about you getting ill because you're worrying about me. I need to worry about me. This has to be and I and I think that that made me a bit selfish if I don't know if selfish is the right word, but you had to be selfish in order to get through the treatment and everything that you knew was coming. Yeah. Right. So, it's like not about you, about me. Suck it up, man up. Let's go. I mean, that wasn't the didn't say that on the first conversation, probably about two weeks in. [laughter]
I find that that's almost all I worry about. Like when I had my breast cancer diagnosis, my parents were the same as yours. They were absolutely amazing. They were, you know, they took me to every appointment. My friends almost didn't come into it because I didn't need them because I had both my parents and I was so lucky. still am. and then when I got my secondary diagnosis, my metastatic diagnosis 10 years later, again, they were absolutely there. Different life situation now because I have a partner and a family, but my parents are still, you know, absolutely fundamental to the to everything. Oh, completely. But for me, I've always been my first thought always goes to them. Like what upsets me is thinking about the people in my life without me. So if I think if I die from this and my husband is without me or my parents were without me that's what that's what upsets me. That's what gets me going.

Yeah. I mean it's Yes. That bit that completely it's for me like I the girls my husband I want to be here. I want to see everything. We want to do everything to kind of like together and I don't I'm greedy for time in that regard, you want to see it all, but you never see it all. I suppose it it's I'm a bit more pragmatic about it now. right, rightly or wrongly, it's you just I'm not scared of dying. I mean, for the first 3 years, I was petrified, but I'm not scared of dying now because we're all going to die. It's very much I've accepted it. I suppose it's and I, as I always say to the girls, you know, cause of death, there has to be something on your death certificate. So, it doesn't matter because we're all it's a path that we all we're all going to have to walk at some point. But for my parents, I mean, I can't [sighs] they're only 20 years older than me, right? So, my parents have me where it's like you. So, I'm it's friend parent. It's it's a bit of a mixture of the two. But I don't I didn't like I you kind of like the cause of pain to them. I didn't like to see them upset. I didn't like to but it's and that's what made me horrible to them. I suppose it's like I don't want to see this because I couldn't cope with it. But amazing.
Except you're not the source of the pain. The cancer is the source. The cancer is the pain.
Yes, I know. I know. [laughter]
So it's almost eight years on. How are you doing now? Are you still on treatment? You still on tamoxifen?
I'm still on tamoxifen. I've got another 3 years left of tamoxifen. Chemo, surgery, radio. That wasn't the hard part of the battle, I would say, cuz you're so cottonwooled. You're protected from it all by, you know, you know your chemo nurses, you know the porters at the hospital, you know everybody, right? That's your new community when you're going through treatment. But the battle starts I think when treatment ends. It was actually I was it's quite frightening. I used to be quite scared. It's like no one to talk to, no one to again just protect you from it. It's I'm pigheaded and I'm stubborn. It's Taurus season. It makes my daughters laugh at me. It's [laughter] But that's what gets me through. So, I don't want to get up. My bones hurt. I am tired. I have brain fog. things that used to take me five or 10 minutes to write now take an hour. I accept my limitations, but I don't let them win. You know, I go out and walk. can't go to the gym, but I could quite happily there is that other part of me that could I could hibernate for the next three years and not do anything. But I don't let that the dark side kind of take control. it it's not it's never over. A cancer diagnosis is never over.
Absolutely not.
No, it just evolves, doesn't it, over the years? Yeah, there's different phases to it.
Yeah. And you've had quite a bad time on tamoxifen. Can you tell us about that?
I should say as well for any listeners who don't know tamoxifen is a drug for oestrogen positive cancers that basically keeps your oestrogen it suppresses your oestrogen because my cancer cells oestrogen is food to them it's like fertilized so it grows it's just the fatigue the physical mental fatigue but you can't sleep I was a chronic insomniac beforehand but on the tamoxifen it's worse and so I take sleeping pills which I know I am physiologically addicted to because the minute I don't take that pill I don't sleep and then if I don't sleep I don't function it's just you choose to get on with life tamoxifen is a 10year prison sentence that I have to go through because the outcome at the end is worth him. my daughters are now 19 and my and 17. She's going to be 18 soon. So, before when I was diagnosed, I wanted to see them finish school. Now, I want to see them finish university. I want to see them, you know, go to work, get jobs, do all the stuff that we all want to see. So, uh, I will always come back and say, I'm going to stop. And then it's like you can't I can't even if I want to stop the tamoxifen stop the tamoxifen because it does inhibit your life in loads of ways if you know not if you let it you know you I tolerate it my pain threshold's high you know I will walk through I'll I just you just go through it right I'm sure you're the same with whatever side effects that you deal with now but the girls are such motive I mean my husband too but my babies they're such a motivating factor so no three more years and we're nearly done the hard part we're over the hump.
Right yeah and I'm sorry you've had such a bad experience with tamoxifen. I don't I don't hear of that many people who've had such bad experience with it and it's also so hard to know what's from what because you know I had fatigue after my treatment and when I was on tamoxifen but that was also following eight months of chemo and 33 sessions of radiotherapy and a surgery. So, you don't really necessarily know what's coming from what and if you're also menopausal as well. You know, there's so many different contributing factors.
So many and that's the thing. Everybody's cancer is unique to them, I think. And how they respond to it is unique to them. but I choose not to. It doesn't define me. It was It's a part of our lives, right? Of course. But that's it.
And you mentioned before that one of the hardest parts was finishing that active treatment and kind of being given the all clear and just being cast out into the world.
Yes.
What have you done to alleviate the difficulties from that period of your life? So well how have you made things a bit better?
So this is where I say Breast Cancer Now. they were they were just amazing. You know, I was at a networking event and Sally Kum was talking and we started talking about breast cancer and she connected me up with relevant parties at BCN and the community, the breast cancer community, the there is no longer a need to explain how you feel, right? because we all know it's we don't need to justify it's the support has been phenomenal. but and the way because I've had the right support and we I've talked about it at so many events for South Asian women. It's helping other people that just makes it makes the crap that you go through better, right? It's there's at least there's something positive coming out of it. And being involved with the show last year, meeting the you know the other models. I mean some of those friends are forged for life. Yeah. and just seeing I mean it's a great community. I really do think it's a fabulous community. Uh what BCN does is I think it's amazing and we will continue to walk for Breast Cancer Now. you know do everything but it's it that's my way that's my family's way of giving back. So as a Sikh we have this concept called seva. So save it means service essentially and this is my service is to give back to all those women that don't know just want to be heard are too scared too frightened you know just they just want to be heard and seen right and when we're together I mean I know the show's coming up in the next couple of weeks we are all so looking forward it's just that community and that supports you in every which way that you need
Yeah. Well, I'm so glad that you've got so much from Breast Cancer Now and from being involved in the Show last year and from meeting the community and it is absolutely the service that you're giving back by sharing your experience and particularly advocating for the South Asian community and teaching women in the South Asian community about breast cancer signs and symptoms and how to talk about it and those kinds of things. Like you're 100% giving back. You're doing so much. One of the things you're doing, you're making sure people in your community are properly represented when it comes to cancer research and treatments. What are the main issues?
Okay. So, there's enough data out there. It's been known for a while that clinical trial populations, majority of medicine is tested on middle-aged white men, dare I say. I'll put it bluntly. medicines aren't even, forget the South Asian community, medicines aren't even designed for women. Yeah. Right. Because there's not enough participants. How you would react to a medicine at the molecular level, how it how I would react is so different. And if our data is not going into the decision-making process, the designing that medicine is not for you.
But hang on, surely that can't be the case for breast cancer medicines which primarily affect women.
Yeah. No, no. So, it's for clinical trial data.
Okay.
So, let's just park breast cancer just for all clinical trials. There's not enough participants of diversity. Yeah. Right. So and if we don't have the diversity we don't have the diversity of results and we can't take them on board on in how we design the drugs what you know safety efficacy profiles are going to be different depending on your genetic on your genetic background. So we need to take part right women need to if we go take it back to breast cancer clinical trials you have to be part of the solution. You can't say that oh this doesn't work on me but when the drugs are being tested did you step up and participate in this clinical trial right so that is that's where we need to inform just generally I think the female population to take part in clinical trials because that's what gives your body a chance and your future your daughters your granddaughters a chance because if your data is not in there it's like when they look at AI if the data set is closed and it's just that just works for that that group you know the group has to be bigger and why aren't women and non-white women participating in the trials is it on the side of the trials we're not looking for those people or no so it's it the pharma company so there are there is guidance that's in place where there should be a diversity and inclusion plan right so that that's always there but you can't make a person, right? The pharma companies would absolutely 100% love to have a diverse population, right? That's that's their goal. That's their aim. But it the community needs to be informed. You know, there they need to there needs to be an increase in trust with the medical profession, I suppose. that comes into it as well. But it goes back to you can't ask the question if you don't have the information and you can't advocate if you and be empowered if you don't have the information. So it always goes back to education. So what I've done loads of I go to like Sikh temples and popups those are where you know you speak to women. I'm doing one tomorrow in East London where it's a safe environment for them to ask, oh, you know, this doesn't feel right. And it's like, it's okay. How long has it not felt right? You need to go to the doctor. Oh, but I, you know, I don't need a mammogram. I we don't we don't have breast cancer in our family. It's just a lump. It's like it's never you can't it can never be just a lump. You need to see what it is, define what it is, and deal with it according to what it is. But what we what I try and do is signpost people, give them the information and what I like about that, you know, I get loads of material from loads of different charities and I and again, you know, you know, I'm pro Breast Cancer Now, but they provide so many physical leaflets in so many different languages, right? So you can I can physically hand them a leaflet, right? They can go away and read it if English isn't their first language. There are so many other charities you all kinds of diseases where you have to download it and print it if it's in another language. Now, do you think this person who doesn't have English as their first language will have the wherewithal to go to the website, download the document and print the document?
And also, if they did, they would probably it was because they would be more conscious about what the disease was in the first place. And if they've got that level of interest, then they would probably just go to the doctors.
Correct. Correct. Right. So it's kind of it's so there's so many different factors in for I see South Asians are interested in their health. They just don't know enough. Yeah. And I see where when I've spoken in groups of women only. They do ask questions. They do want to know. They do want to attend. I mean sometimes they think mammograms well you know if I'm having a mammogram that means I've got cancer. It's like, "No, no, no. You're having the mammogram in order to ensure you don't get cancer." and it's even is it going to be male or female? Will it hurt? It's just they the information is very simple information to get across to them, right? It's not complicated information that they need to be provided with. But there are there are there are cultural taboos. One event that I did, one of the panellists that spoke, you know, medically qualified, her family didn't know. She didn't tell any of her family because of just the stigma that she had cancer. That she had cancer. So, you can't it's a hard enough journey. It's a lonely enough journey and then not to be able to talk about it to people that matter the most to you.
We mentioned the show Breast Cancer Now, the show which you modelled in 2025, but you were also the keynote speaker and you gave the most amazing speech that had most of the room in tears and just talking about it for days afterwards. one of the things that you said was in the South Asian community, the C-word is the unsaid word.
Yes.
Tell me about that. Why is cancer a taboo word?
Because cancer is automatically associated with death.
Okay.
Okay. So, I would say people see cancer and they don't see it as a condition that you can survive, right? People live, you have a cancer diagnosis and now guess what? You can survive. Now, it's just that automatic connection with death. And death is again something we don't talk about. So, and round and round we go. we have to normalise the C word with one in two of us getting a cancer diagnosis in our lifetime. It's got to be part of your normal vocabulary.
How does that change? How do we get that to change and to get people talking about cancer without necessarily saying that it's going to imminently cause death?
Yeah. I think the more you talk, the more the louder your voice. it's like with the with children, you have to give them food like 20 odd times before they like the taste of it. you know, be it broccoli or, you know, the good stuff that they won't automatically like. I think it's the same with this. You have to keep saying the same thing over and over again and again. You have to keep banging the drum. I would like to say the younger generation are better, but that again isn't necessarily true because I could again sit here and tell you stories. It's like, yeah, but you're 30 odd. You It's You're not my 78 year-old mother. You understand that you should know better. But no, yeah, you have to keep the conversation going, normalise the conversation. And I think I must bore my family, anybody who will listen because we need to we just need to keep talking.
Yeah. Another thing you said in the speech and uh forgive me for quoting from your speech, but it was so brilliant.
Bless you.
You said, "Early detection is crucial, yet it's not happening for everyone. Although more white women are diagnosed with breast cancer, mortality rates are higher among black and south Asian women. Tell us a bit about what is lacking and why this is.
So they're evidently being diagnosed at stages three and four. Right. So black and south Asian black and south Asian women. So approximately 70,000 the number may be higher now are diagnosed with women are diagnosed with breast cancer majority white women but they're diagnosed at earlier stages.
Right. Right.
So it's the treatment journey is not so traumatic.
Right.
But when you let something go to stage three and four that's an uphill battle. I mean mine was stage three but because it spread to your lymph nodes because it's spread to my lymph nodes but I mean I reacted upon it but in order to level the playing field we need to target screening in South Asian communities in black female communities just because it's keep you know you again and again and again you make it easier for them you mobile units at the there were you know at the gurdwaras at the mosques at the temples you know there has to be a way around it and when I've spoken to women they will attend they just need to be told they want to be if it's explained in a culturally appropriate manner with all the nuances taken on board they understand and it's I understand the importance of this
That’s a win you know when you sit when you look at stages three to… So we need to look at it from it has to be grassroots community level doesn't have to be like big fancy campaigns. It's just talking to people telling them making them understand acknowledging their fears which may seem like bizarre to you and I when you know when you have the understanding but you know explaining it talking it out and that is where it will make the difference.
So is the main issue diagnosis? It's later diagnosis leading to the higher it's a later diagnosis because they're not going to their screening programs. They want to see somebody like them. I always say that that makes such a difference. It's like being in the breast cancer community. You don't have to explain certain things. And if it's somebody like you in the South Asian community, you won't have to explain certain things that you feel awkward about because they will have a natural understanding of it.
Yeah. So if anyone's listening and thinking I'd be up for being part of a clinical trial, who should they speak to about that?
So if they are under their GP, they can speak to, you know, ask their GP. That's the first thing. If they're attending like hospital, under the care in secondary care, ask the consultant, is there a clinical trial? They tend to be recruitment material stuck up on walls predominantly in English, but that's, you know, that's the that's the other bit of the battle. but there is a global website clinicaltrials.gov. So if you're and majority of people are computer literate you know they can find this out. You just put in the disease that you're looking for and it will tell you okay these are the trials these are the locations right literally right down to which trust in each country is running that trial. You have to meet certain inclusion and exclusion criteria. So you have to be the right fit for the trial. but the information is there. go to I don't know why I always use diabetes UK, Breast Cancer Now you know you can call them they will have lists you know cancer research UK have lists of all the trials that they are involved in. So the information is there but easier sport of call your consultant or your GP.
Fantastic. Yeah. I think I heard you talk about this on a different podcast. You mentioned that you come from a very traditional background where women are seen and not heard. And your parents’ job was to prepare you for becoming a good wife. Yes. In quotes. And it that doesn't sound like your parents were I don't know if that they were a bit different from that, but how has that whole thing affected you in life?
So I'm a child of the 1970s, right? My parents came here in mid-60s. So they when you as an immigrant, you know, I have so much more understanding of it of my childhood at this age than I did at that time. You want to hold on to whatever you came from, right? And it becomes more important. So like Indian society on the whole it's better but we it's a patriarchal society. I we can't I can't deny that. but you're raised to learn how to cook. You speak when you're spoken to. This is not now. This is like going back to the 70s. I have to you know have to make that clear. and it's I think one of the things I've said before is like, oh, what will your mother-in-law say if you go and you don't know how to make this food or you don't know how to do that? Cuz it's just like, you know, you're being prepped. my parents learned on their again because they were 20, right? They they've learned, they grew, they matured, they saw what was around them, took on the bad, left the didn't, you know, took on the good, left the bad, and kind of you you have to evolve. But I mean, my parents 100% evolved. And I think having me as their first child, they had no alternative but to evolve because my why can't I do this? Why can't I do that? Oh, girls don't do that, girls. What do you mean? But why? Tell give me a valid reason to why. you know, they still get the wise and there's still no valid reasons, but it's my daughters are brought up to have a voice, be financially, emotionally independent, be go do whatever they want to do, you know, take pride in, you know, take pride in being of, you know, being Sikh, being of Indian heritage and being British. They have they have all of that because like I say, you take the good from all.
Yeah. What are the things that you're keeping from your upbringing for your daughters and what are the things that you're getting rid of?
Oh, so keep way more demonstrative than my parents. So saying I love you. Saying I love you. So the girls every time we Okay, bye mommy. Love you. It's it's just there's nothing it's natural. It just flows. what am I keeping hold of? Chili and coriander. [laughter]
Absolutely. Never get rid of those.
Never. Because it's like my one there's this one conversation that I've had and it's like well we the girls we will talk about you know who you going to marry blah blah and it's like you know you marry somebody who's good and kind first right that that's that that's the that's the first thing on the list. And I think one daughter said, she goes, "Well, it would be easier if they were of Indian descent." I said, "Why is that, baby?" And she goes, "Chili and coriander." You know, you know, when you put it into pasta, you know, I won't have to explain. [laughter]
But it's and turmeric as well. I put turmeric and everything.
Yeah. Absolutely. So all I mean the food so all of the food is absolutely kept you know we cook a lot at home. So all you have to kind of distinguish between like the religious aspects and the cultural aspects right. So religion is a personal thing you know you can practice whatever religion how you choose and in which manner you want to practice it but the cultural stuff is for us it's very food centric you know community eating together all of that.
Can I ask you about how food how food featured in your cancer experience? Was that something that was able to bring you together as a family through the difficult times?
So, we would well we like cooking at home. So, it's don't get me wrong, I love a good restaurant, but we will cook at home. My mother would make everything from scratch. She would she fed me, she fueled me. you know, if I see another green kale, spinach, apple, it's like, I don't want to drink it. And, you know, I'd be a petulant five-year-old, right? Because everything tastes disgusting. You sit, you drink this, you eat this, and she would make, and I know after chemo days, I used to love dahl. And my husband was always have, he'd have dal ready for me just because that was the only thing that would taste I mean, lentils, I could live off lentils forever.
So, so good for you. You know, all the protein and everything that we're talking about these days, it's like the perfect food.
It was the perfect food, but food helped. I didn't like the taste. I mean, I lost the taste. Yeah. You know you had the same, but knowing that when I would come out of it, the joys of going back to the places that you used to eat, the making the foods that you used to like, and actually tasting it again. So it's food is one of the simplest pleasures we have in life, right? And yeah, it helped a lot.
And how's the whole experience of having cancer changed your relationship with your parents? I'm honest. Not that I wasn't honest. I'm probably more honest, more blunt. I will say what I think. it's again, not that I didn't before. It's I actually don't sit in judgment of anybody now. I actually don't care for their judgment because who are you to judge me? I just go, like I said earlier, I just go do what I want to go do. If I want to help people, I will go help people. Uh I work, we go out to eat, we do we do anything and everything, but I'm I don't care if it upsets some people or upsets my parents. I do me.
In addition to the amazing speech you gave at last year's Breast Cancer Now show, you also modelled in the catwalk at the show, what was the whole experience like for you after your after your cancer treatment going through that. So we talking about this only last week. Signing up to be a model was my daughters made me do it, you know, did not think it would go any further. I was absolutely petrified. Speaking was easier than I mean I think I ran down the catwalk than walking that catwalk. So, because it was so completely out of comfort zone. And Rebekah, the stylist, who is fabulous, she puts you in clothes that you would never ever wear under normal circumstances. And she tells you this at the time, but you just see that little piece of the jigsaw. you don't see like the whole picture that she that she has in her head. so what I would say to like for this year's models and this is what we were saying to them the other week, trust the process. It was it's the most amazing experience. You bond with people, the audience is there with you. it I mean it was fabulous. I think it's such a fab way of promoting breast cancer, right? And you know you get to raise a lot of money, you get to raise a lot of awareness and you get to have the conversations. So no abs the Show I honestly best thing that happened last year.
Brilliant. And you were amazing in it as well. One final thing you said in your speech was cancer is the birthplace of courage. Tell us what you meant by that.
Oh, you think you're really brave until you have a cancer diagnosis. You think you can walk through fire, walk on water, nothing throws you. It taught me how strong I really was. I actually wasn't strong before. I just thought I was. I am stronger, more independent, but I know when to ask for help. Courage doesn't mean that you do it all by yourself because you I'm now surrounded by a village people that I lean on and it's a mutual like two-way process. But I really did used to think I was strong. I am strong now. There's a phrase that I like which is women are like tea bags. You don't know how strong they are until they're in hot water.
It's like a potato a potato in hot water goes soft. Whereas an egg in hot water will you know you get a hard boiled egg.
Yeah. Right. So it's the same concept. You have no idea how strong you are until you actually have to be.
Yeah. 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 to talk to live well?
Self-care. Respect for your body. that your body is your temple. Use your voice. Don't walk away. You know what feels normal to you. So fight for your fight for your body.
Brilliant Jay. Thank you so much for sharing everything you shared with us today.Thank you so much for joining us.
Pleasure. Thank you.
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