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It felt like a death sentence because anything in your brain you just think, well, that's not good, is it? And it was a big, shock. I don't remember a lot about those few days actually. I think maybe I've blocked it out. I feel like hope breeds hope. The more you see, the more you find and it just sort of, it's easy for it to seep into everything and you start to believe it.

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 triple negative breast cancer and specifically metastatic triple negative breast cancer. Our guest is Nikki Wheatley, who was first diagnosed with triple negative breast cancer in 2019. Unfortunately, Nikki found out in 2021 that the cancer had spread to her brain and she has now been living with metastatic or incurable breast cancer for five years. We'll be talking about what triple negative breast cancer means and what happens when it spreads, as well as how Nikki continues to find hope despite the most difficult circumstances. Nikki, welcome to the podcast.

Thank you for having me.

We're to start with a few warm up questions. So we talk about bucket lists and distant future plans, but if there's one thing from your life goals list that you could do now, what would it be and why?

I've got it on my list to go and do a road trip to California. And I'd love to do that right now with Ella and Paul and go and see the mountains, the lakes, the sea, the whales, uh just uh a three week road trip would be wonderful.

And that's your husband and your daughter?

Yeah, sorry.

That sounds amazing. What brings you joy right now?

Just the little things really. I find joy in things that I never used to find joy in, just like getting up and having a cuddle with my daughter. Not that I didn't find joy before, but it really, every morning it's what I look forward to. Spending time with my cat um and just doing normal everyday things really.

I relate to that. My cat brings me a lot of joy.

Yeah. So shall we start by explaining what triple negative breast cancer is?

Yes. So breast cancer can be driven by two different hormones. oestrogen or progesterone and the protein HER2. And it can be driven by one or a combination of those things. But triple negative is when it doesn't need any of those things to grow, which is what I've got. Hence why it's called triple negative.

Okay.

And it typically means there are fewer drugs and treatments available because if the cancer doesn't respond to oestrogen, then you can't give it an oestrogen blocker, for example. there's nothing that you can target because there's nothing for it to latch onto. So yeah, it's a lot more difficult to treat and there's a lot less treatment lines for it as well.

So you were first diagnosed in 2019. How did you come to find out you had breast cancer?

So I knew to check myself. I've been checking myself for quite a few years. I had a friend who had secondary breast cancer, but I didn't really know what I was looking for other than a lump. And I initially found a lump in 2018, which turned out to be a fibroadenoma. And then I started running in 2019 and my breast changed. I just thought it was because my body shape was changing with the running and I had a grisly bit on my chest. I didn't think anything of it because it wasn't a lump. And then I saw a poster in the changing room, sorry, the toilet of a salon. and it had the signs and symptoms of breast cancer on it. And I didn't think again, anything of it. And then later that day, I got a sharp pain in my breasts that went to this gristly area and I had a flashback to the poster. uh And I booked myself an appointment the very next day. And within two weeks, I've been diagnosed with primary breast cancer.

Wow. And I mean, that's amazing story that, you know, to hear that those posters work.

Yeah.

And So they told you then that it was triple negative breast cancer. What did you understand of what that meant at the time?

I don't think I understood enough. I don't think they really emphasised exactly what was going on with me. They said it was aggressive. It was stage one, but they said they may not be able to cure it. They weren't sure. But yet they said it wasn't in my lymph nodes, so I didn't need a full body scan. And for me, that was how I thought that the cancer would spread. So I didn't really appreciate, I don't think at the time, what the breast cancer could go on and do unless I figured if it was gonna spread, would go stage two, stage three, and then stage four.

Yeah. That's not necessarily a bad thing. Not really appreciating at the time how bad it could get. Like I was the same. felt, I think I was very naive. when I first got breast cancer, never even occurred to me that I would die from it because I think I was just used to hearing stories of people saying that it's all curable. And I think sometimes at that early stage, being really positive about it can be, can shield you a little bit.

Yeah, although I do feel that had I understood how it spread, so mine eventually spread via blood, if I'd have known at the time I might have pushed for more scans because they didn't scan my body. So they just said because it wasn't in my lymph nodes that I didn't need it. So I do feel a little, if I'd had a little bit more knowledge, um maybe I would have been a bit more pushy with and advocated a bit more for myself.

Yeah, it sounds like you should have been scanned. And you mentioned the word aggressive and that's a word that I hear all the time in relation to triple negative. Like how does it feel to you to hear that word?
Because I know how it feels to me and it's not usually mentioned in relation to my cancer.

It can be quite scary. I knew my cancer was grade three so I knew that it was aggressive but I didn't relate that to the triple negative part of the time. I just thought it was because it was grade three. But when you hear it now, I think a lot of people, it does terrify them and there is lots that can still be done. It's just that maybe you have to act that bit quicker. That's why self-checking is so important. And also there's usually, um not usually sorry, there is a chance that you could have a BRCA gene. It's more common with people with triple negative. So it's important to get moving when you have triple negative because they need to check to make sure there's not a reason why you've got it.

And did you have the gene?

I actually didn't. It was one of my biggest fears actually when I was diagnosed with my primary. I've got a daughter and a sister and I was worried that if I had the gene that it would affect them. But I don't actually have it. It was just pure bad luck.

So, despite the scary statistics, you were actually told that you had just a 10 % chance of the cancer.

Yeah, less than a 10 % chance.

Less than a 10 % chance. But then two years later you find out that it has spread.

So I had stroke symptoms. I initially started with loss of peripheral vision in my left side. I thought I had a migraine, even though I don't suffer with them, I thought, oh, that must be what it is. So I had a short sleep and when I woke up, I had pins and needles down my left arm, quite severe pins and needles, but I wasn't lying on the arm. There was no reason for the pins and needles and it went on for a long time. And then my face went numb and that's when I thought I need to go to A &E. So I went to A &E. I was seen, they thought I'd had a suspected stroke, but I was fine. There was no sign of, I wasn't slurring, there wasn't any after effects. So they sent me home with some aspirin and booked me in for a stroke clinic. And I was contacted and actually that was on the Friday and they saw me on the Sunday, which I thought was a bit unusual. And I went in and I had a brain scan and a Doppler on my neck and I was called in to the consultant and he said, I don't normally see people on Sunday, but because of your history, I wanted to see you. And he said, you have had a stroke. He said that there was a lot of damage on the back of my brain.
And he gave me blood thinners and sent me home ready for more tests. But I got a phone call later that day from the stroke nurse saying, you need to go to A &E now. And they'd reviewed the images. And when I got to A &E, they were very... They were very nice to me, which is unusual in A &E. They were offering me cups of tea in the waiting room, which I just rang alarm bells. And then I was called into a side room with my husband and a registrar clumsily told me that I had a mass on my brain. They could see that there was a mass and it was covered by swelling, which is what they thought the damage was initially. And he said, did I know what that means? And I said, I did. And I knew it was back. But I was left in a room in A &E all night on my own. I had to my husband home to be with my daughter. So yeah, that was my experience of being told that like, I mean, he didn't say it was definitely back, but that's what they suspected. And he never said the words, but I knew that's what he meant.

And how old were you then?

I was 43 at that point.

So first of all, to think that you've had a stroke at 43. And then second, to find out that your cancer has probably spread to your brain.

It felt like a death sentence because anything in your brain you just think, well, that's not good, is it? Yeah. And I, it was a big, big shock. I don't remember a lot about those few days actually. I think maybe I've blocked it out, but I had brain scan, like another brain scan and MRI this time and a body scan. And I was kept as an inpatient in the hospital. I really wanted to go home and they were like, no, you need to stay in because we won't get the scans as quickly if we send you home. So I had to stay in for like three nights. But yeah, I did. I was terrified at that point and I was looking frantically for stories of hope, like other people that had not so much triple negative. At that point, I still wasn't really aware of the connotations of having triple negative. It was more the fact that I had it in my brain. and I was looking anywhere I could to try and find stories and I couldn't find people like me. It did worry me at the time that I wasn't looking and finding people with brain mets, but actually there's now a plethora of Facebook groups and all sorts where you can find other people like you, but at the time I was struggling to do that.
But yeah, think it definitely felt scary at the time. Look at me five years later

I know yeah, it's amazing. And so hopeful for other people. And I really hope that people listen to this episode and, you know, feel a little bit less scared knowing that there is someone who's here all these years later. what um just going back to before the metastatic diagnosis, did you know the signs and symptoms of breast cancer spreading? before your diagnosis.

I was given an open access appointment with the team at my local hospital. Because of COVID, it was delayed and it was over the phone, so not ideal. And it was the first time that I became aware of the fact that it could spread via blood. And I also didn't realise until that point that it could spread from stage one to stage four. And I said, surely if it's going to come back, it will come back in my breast. And she said, oh, no. it can spread from stage one and then reappear as stage four. that was really when my brain started going, I should have had more scans at the time. I don't think I had it at the time, but really I felt you should be more closely monitored. think anyone that's got grade three cancer should have their brain scanned and their body scanned as routine. don't think it should be a, it in your lymph nodes question? If you've got grade three, can spread by blood.

grade three isn't stage three.

No, grade three is like a... It's how fast aggressive the cancer is. It grows more quickly. Yeah, it's definitely a red flag.

You had your primary diagnosis in 2019 and then your secondary diagnosis in 2021, which means that the majority of your time when you were cancer free... was COVID, was lockdown. Was that um a good thing for you because you were able to spend that time with your family and your young daughter or was it a bad thing because you were sort of locked away?

It felt bad at the beginning. So I started treatment, my chemo, while before lockdown and then in the middle of my chemo, it went into lockdown. I could no longer take my husband with me to the hospital. I could no longer go to appointments with anyone. and I wasn't allowed to even go for walks. I was told just to stay in the garden. Luckily we had a garden. But my husband's a black cab driver and he then realised that he probably shouldn't go to work because he could bring COVID home to us. So we became this little bubble of three and actually it was lovely. It was so nice to spend time together at home. And then I finished my treatment in the June 2020 or July, sorry, 2020. And then obviously we have more lockdowns from then, but just spending that quality family time together actually was, it was a tonic. It could have been an awful experience going through the cancer during COVID, but because I had them at home, it really, really helped.

That you actually only really had between finishing treatment.

Oh, sorry. Yes.

You only really had a year if that before your secondary diagnosis. So you really were sort of. Yeah. It wasn't a long time to think I'm cancer free was there?

No, I started running again after treatment and I did the milestone. It's called a milestone marathon. think it was called, but it was 26 miles over a month and I started doing that and I was really getting into that and feeling really good. And then obviously by the time I got diagnosed, everything just went out the window. I didn't run again after that and I never have. But you're walking.

Yes, I am walking.

And was the stroke caused by the metastatic cancer in your brain?

So it actually wasn't a stroke. It was just the mass they were seeing and the fluid over the mass. I had a lot of swelling, a lot of oedema over it. And they just assumed that it was damaged from a stroke, because it was pressing on No, it's quite on, it was on the parietal lobe, which affects senses. Hence why I was losing sensation in my face and in my hands. I used to lose sensation across my nose and my vision, obviously, it was obviously pressing on something that caused me to not be able to see that day. But I've not had that again. It's just the once. But then other symptoms started to appear afterwards. So I struggled to finish sentences. I was getting some dizzy spells. Fatigue, I literally couldn't stay awake. was falling asleep left, right and centre. And yeah, I really struggled with memory and my cognition. Numbers became difficult, just even writing down a phone number. I still struggle with things like calendars. I don't know why. I just can't see what's on the calendar. So I'll look at the calendar and I'll see. I've got two things written there for the same time and I can't see that they're clashing. And I quite often double book myself or not miss appointments, but my husband will tell me you've got this going on and I won't have realised. just, numbers seem to be a problem for me in time now.

And before we talk about treatment and what happened next, can you just tell us what it felt like to hear that your cancer has spread to your brain?

It definitely felt like a death sentence. I was terrified and I don't really... I think I was scared to ask. I did ask what my prognosis was and my oncologist just put her hand on my knees and said, it's not great. But I really just wanted to look for hope. I wanted to find other people. Lisa Fleming, she was Make Seconds Count then and now House of Hope Scotland she has lived with, she's had brain mess, but I struggled with the fact that everyone else had had a craniotomy. and I wasn't able to have one. Mine was inoperable.

Is that when you take uh it out?

Yeah do surgery to remove it.

Yes, but because of its location, they were worried I'd lose sensation in my fingers um and lose some other senses. So they decided not to do that. And I could only have CyberKnife, which is targeted radiotherapy to the brain. But I did come across a couple of people who, although they'd had craniotomy, so Lisa and Fran Whitfield, and were doing well and it just pushed me on and made me think I can do this. And I went to a very early on, went to a, it was called Thrive, run by Strong in Surrey, personal training. It was all around exercise and cancer. And it just, gave me fire in my belly that I can, if as long as I can keep myself fit, I can cope with treatment and I'll hopefully be able to move forward. So I went into positive mode. fairly quickly.

Okay. We've, we've had Fran Whitfield on this podcast a couple of years ago, actually talking about her incredible cancer story, which I think she was diagnosed at 24 or 25.
Yeah. um And having brain surgery and everything else, but she also talks about um exercise and hope. So yeah, I would recommend people go and listen to that episode as well.

Yes.

But what happened next in terms of treatment, you mentioned CyberKnife. Tell us a little bit about what they told you in terms of treatment options.

So they said that I could have this cyber knife, but that they didn't think. I had two lesions in my brain. One was three by two centimetres. The other was tiny, about two millimetres. Although it was on the front of my brain and apparently on the part of my brain that causes impulse. we nearly bought a chalet. I'm very risk averse and we nearly bought a chalet. With money we didn't have, I thought I was going to get my life insurance. I was like, let's buy a chalet with it. And then we found out that it causes impulse where my tumour was. So I'm glad that we didn't buy a chalet.

Wow

But the treatment options were limited. So I just had the cyber knife, but they said it probably wouldn't get rid of the larger tumour, which it hasn't completely. There's like a half centimetre left, but it's no longer lighting up on the scan. So it's either asleep or scar tissue. but it still takes up room in my brain. So still causes me, like I was saying before, some cognition problems and also um fatigue and things like that. But it's not a massive issue compared to when I was first diagnosed. I was a lot more poorly then. And my team took a, um they took a punt on me and decided to give me chemotherapy, which isn't a standard protocol for brain mets. They usually don't. do systematic therapy. I had a tiny nodule on my lung and I think it kind of tipped them over to maybe we should do the chemo and they didn't know it was cancer, nodule on my lung. And the chemo actually has kept me stable for nearly five years. So I'm glad they did it. It's a very tolerable chemo, oral chemo, Catecytabine. And I'm really grateful that they took a chance on that because they could have just said, well, wait and see and just watch and wait. they didn't.

So you think that's the reason you think that's the main reason for your survival and your continued being well?

Um I've spoken to my oncologist about this more than once. They can't be sure that that's what's keeping me stable. Catecytabine being only crosses the blood brain barrier once. You've had like either surgery or cyber knife or similar.

What does that mean?

So it goes to your brain and... Yeah, so the blood brain barrier stops chemicals reaching your brain, which is probably why it went to my brain because the original chemotherapy couldn't stop, couldn't get through. Most chemo's don't pass that barrier because it's very small. The particles have to be tiny. But when you have surgery or radiotherapy to the brain, whether that be whole brain or targeted, it breaks that barrier down slightly and it allows certain drugs through and Catecytabine being one of them. So it crosses that barrier and then can travel around the brain to hopefully stop more lesions appearing. They don't know whether that's, mean, she said she didn't take me off of it because it could be what's keeping me stable and I'm well on it. So although I still, I suffer with fatigue and I get sore feet, it causes hand and foot syndrome. which the way the chemo leaks into the capillaries of the feet and causes them to be sore. But other than that, I live fairly well on it. So I think it's a brilliant thing that they did, because they didn't have to. They could have just waited.

So you had the CyberKnife that was a series of treatments, but you're not having it anymore?

I had one treatment. just had one. It about an hour long treatment. And then unless I have any more lesions appear in my brain, they could be treated again with CyberKnife or GammaKnife is another option or whole brain radiotherapy if there was a lot or they were diffused or scattered or surgery. So it really is individual depending on um the size of the tumour. And then the Catecytabine is an ongoing thing that you take.

Yeah. So I started off on two weeks on one week off, but the Side effects were a bit too much for me. My feet were really sore. I was very fatigued. I have to eat 12 hours apart to take the tablets. So it's quite restrictive. I have to have my dinner at the same time or breakfast at the same time every day. And I was struggling with that mentally. So then they moved, they reduced the dose initially, which I struggled with. It wasn't enough. My feet were still very sore. I was struggling to walk. And then they changed me to one week on, one week off. And it's by the time you start it, it's over again. and I've got a week off from it. So I find it very tolerable.

How often are you having scans?

So initially it was every three months. My brain is now every four because I'm stable and I pushed back on that initially and my oncologist was fine. She said, we'll carry on with three until you're happy. And then we moved to four and my body's now every six months and the proviso is if ever I have any symptoms, I just tell them and they have been brought forward before because of that.

And there's apart from the lung nodule that you mentioned, there's no other cancer that you know of?

No, so that's gone now. They said it might not have been cancer. They can come and go. A lot of people have them and they're absolutely benign. There's nothing wrong with them. However, since then, I've had some stomach problems and various things. I think anyone that's got cancer, any niggle and you're worried. They just don't take the risk. They just take you in and you have a scan and just check you over.

And do you have scans, scans, IOT at all when you're waiting for results? I didn't. I think the longer I go, I got a bit blasé. m The appointments used to be a week after my scan, which I could cope with that one week. But if it goes over that week. that's when my brain starts to spiral. think I've got a cutoff point. I'm like, it's only a week, it's fine. But because brain MRIs, in fact, all MRIs are getting more detailed now, they're getting more slices of, so more images, it takes longer to report. So it's now taking longer to get the results, which the scans is creeping back in slightly because you're waiting that much longer. I do feel for people where they're in smaller hospitals and the results take a long time. I think we're very privileged to be um under the Marsden where the results are quick.

Yeah absolutely.

And how, in terms of your mental health, obviously at the beginning, it sounds like it was horrific. It's a shock to anyone having a metastatic cancer diagnosis. How have you been over the years and how have you looked after yourself emotionally?

I think for me, being positive, I used to be a glass half empty person and now I'm just glad I've got a glass. I'm so happy every day just to get up and feel well and be able to move. And I've exercised religiously for the last five years. I make sure that I do strength training. I'm not a gym bunny by any means. I have one session each week where I go and do that with a PT and my best friend who supports me. She comes along to all the sessions with me and she exercises as well. And then I walk as much as I can and I do Pilates. The breathing from Pilates I find really helps my mental health as well as the stretching helps my body. So I think exercise has really been key to that. And also finding my tribe, other people that are living with it and being able to talk to them. think saying things out loud that you can't say to maybe your family about how you're feeling, I think... getting it out into the open actually is very cathartic.

Yeah, sounds like great that you've got a friend who does that with you as well. It's quite a big life commitment going to the gym, you know, doing an exercise regime.

Yeah.

But it sounds wonderful to have a friend who does that with you.

Yeah, it's not perfect, but I couldn't drive when I was first diagnosed. had 18 months of not being able to drive. So I needed someone to take me and I said, would you come along? And I can't afford to do it on my own either. It's not a cheap thing to do and I'm no longer working full time. And it's kept her healthy as well. We've done it together and we've progressed together and I'm so much stronger than I was. It's not necessarily about lifting really heavy weights, but I couldn't lift the Ottoman bed lid before and now I can do that on my own and I feel like I'm looking after, you know, I'm future proofing myself so that I'm stronger for chemo. Because chemo depletes muscle mass. I think it's really important. nutrition as well. I've changed what I eat. The breast care nurse did say to me, I asked about going to see a nutritionist and she said, well, it's not going to make you live longer. And I stopped her and I said, but it's going to make me stronger for treatment if I feed my body better and exercise and I'm stronger. Surely that's going to help me with treatment. Because a lot of people actually they can't cope with treatment anymore because they're too weak. So by keeping my body fit and strong, I'm helping myself going forward.

Absolutely. Yeah. What is your approach to eating?

So I try and eat whole foods. I saw a nutritionist and I called her the thief of joy because she took away everything I loved eating. She wanted me to reduce my carbs and, and, but she did teach me a lot about what are in foods and the things that are good for you. So I now try and incorporate as much of the good stuff as I can. I still have treats, I still eat chocolate, I still have some, I'm a bit of a Haribo fan. But I do, on the whole, probably 90 % of the time I try and eat whole foods and cook from scratch. But because I get fatigued, I batch cook. So I'll cook a load of things in one go, put it in the freezer, and then I can just, in the evenings I'm not. I don't have a lot of energy in the evening so I can just heat something up.

And what did you mean at the beginning when you said that you don't really enjoy food anymore?

I think it's the whole having to eat at a certain time to take my food and also the fact that a lot of things now are ultra processed and I think it gets into your head, I shouldn't eat this and I shouldn't eat that. So I don't enjoy food as much as I used to, but I really enjoy fresh. Like if you were to say to me someone's home cooked a meal for you, I love that. That's probably it's not really a specific meal, more the love and care that goes into something.

Yeah. And knowing that every ingredient has been freshly.

Yeah. There's no nasties in it and that you know what's in it.

Yeah. Yeah. I mean, you can obviously have a little bit of something every so often and it's maybe a good excuse to make your own cake or your own chocolate bars that sort of, you know.

Yeah, some recipes I've to like dark chocolate rather than the milk. I do still prefer milk chocolate. I for a treat now I'll have a square of dark chocolate rather than a bar of dairy milk.

And so triple negative is one of the less common cancers. Does it feel isolating, you know, being part of a community, but a lot of the people in the community having oestrogen positive cancer and not the same thing as you?

Yeah, I do find it isolating.
I quite often walk into a support group or a room filled with cancer patients and I might be the only one that's triple negative. And also because of its bad reputation for being aggressive, you do find that you lose people as well. And I've lost two close friends to triple negative. And it is hard because you do look at them and think, That could be me quite easily. And I'm so sad that it's them that my close friends have gotten. But when you walk into a room full of people and they're talking about drugs that you can't have, it's quite, it can be quite difficult because you really want to relate to someone. But you do find the odd person. I've picked up so much information from other triple negative people. So they're still there. You just, you just don't come across them as often.

And you have a young daughter, Ella.

Yes.

How have you managed parenting? through cancer?

Oh, when I was first diagnosed, I wasn't allowed to look after her on my own, which was hard because, you know, when you're the primary parent, I mean, I live with my husband, we're a unit of three, but if he was at work, I wasn't allowed to be on my own because I was at risk of seizures. So I didn't actually have seizures, but there was that risk. So I constantly had to have someone with me, which was really hard because you want to just be a parent and It's also sad when you can't join in as much as you're so tired or you're not feeling well. I do get some nausea sometimes, so she wants me to do things with her, but we found our way since then and she knows the things that I can do with her. Like if it's a running around thing, that's poor. If it's a sitting down colouring thing, that's the thing I'm going to do with her or just sit and enjoy in some crafts and we love doing creative things together. And when I go somewhere, I tend to take someone with me as well. Not because I have to have someone with me anymore because I don't, I'm not at risk of seizure anymore, but it's just having that support if I get fatigued. So I tend to take my mum or a friend if we're going on a long day out so that I'm just able to be a better parent for Ella and help her. And she doesn't have to care for me then as well. There's someone just keeping an eye on me because I don't want her to be a carer at her age. She's only 11. But now that we're further into it, we try and keep her updated all the time. So if I go for a scan, I'll let her know I'm going for a scan. We don't lie to her, but we limit and simplify what we tell her so that it's age appropriate.

How much does she know about your cancer?

So she knows that I won't ever be cancer free. She knows that at some point it will come back. And that's really as far as we've discussed because I don't want to burden her with what comes. She's not silly and she quite often talks about death, but we handle that by saying, but mommy's well now because I am. And that's the truth. And when you talk about death as well, we tend to talk about the fact that no one knows what any will happen to anyone. we, you know, and we talk about funnily enough at school that They're doing a religious studies class at the moment about death and about what different people believe. And the school were kind enough to contact me and say, did she want to be in that class? And I've been able to prepare her and talk to her about that before the class. And then she can nip in and out as she wants to. They've agreed she can sit in the corner. And if she wants to go out, she can. She can listen or take in as much as she wants. I think it's a collaborative thing. I think you have to get other people involved to make sure they understand what she might be feeling.

And what sort of support have you found in terms of being a parent with cancer, talking to your child about grief, figuring out all those bits and how you manage it?

At the beginning, we did it on our own. We didn't really know who to turn to. I have a lot of support from Maggie's at the Marsden. They're brilliant. And I attended a uh fruit fly collective, a parenting with cancer course there, which was really, really informative, really helpful. And we've had a kit from them as well, which was really helpful in talking to her. She was having a, she gets a bit of separation anxiety from me and she sometimes worries about me. So we sat and used the toolkit to talk through some of those emotions. And actually we don't use it very often, but she knows it's there. I think it helps her if she wants to, she gets out and when we can sit, it's like her permission to sit and talk about her feelings and cancer. when I was struggling a little bit with, because she's getting older, not that she forgets, but they need reminding. Like there are times when she says, but you're better, nearly better, mommy, aren't you? And I'm like, I'm not ever going to get better. And I wanted to make sure I was giving her age appropriate information now she's a bit older. So I contacted the Ruth Strauss foundation. I found them really helpful as well. Just validating that you're doing the right thing. And then other parents like you, like I used to talk to Suki Bahia. I used to talk to a couple of other friends about it and it's just really nice. You can ask what they've done and find out.

Yeah

We've done two episodes of this podcast with Caroline Leake. from Fruit Fly Collective, which is really hard to say. um One about general parenting with cancer and a separate one about grief and parenting with cancer. So where she talks about the kits that you mentioned, which are kits that you can apply for that kind of help teach the child a little bit about death, a little bit about grief, but in a really, really child and age appropriate em way.
So yeah, if anyone's listening that's in a similar situation, they can have a look for that episode with Caroline Leake from Fruit Fly Collective and yeah, get some tips there.

There's lots of activities in there that you can do together, which is really nice. Like you can create a worry box and you can, they've got like a little tree. think you can hang feelings on it and things like that. So there's all sorts that you can do that actually don't make it feel like you're sitting talking about it. but actually is helping is quite therapeutic.

That's so great. we, know, we're, we're both from generations where death wasn't talked about much and still isn't, but having those resources and hearing that there are ways to talk about it. Because Caroline started it because her father died from cancer and she wasn't even told that he was dying and it was all quite a shock. And so hearing about ways that you can prepare a child and just sort of help them to understand but in a less scary way.

Yeah

I mean Ella's always been curious about death. I mean, even when she was, I think all children are and they asked questions at the most inopportune moments, like when you're about, she's about to go to sleep, she'll question death and things like that. And it can be very triggering, but I love that she can talk to us. So I think I'd much rather talk with her about it. and be open about it. We were talking the other day about signs that people send when they've died. And she said, what signs should we have if ever someone's not here? And I said, well, we can think about it. We can decide what we want. So it's quite cute because she doesn't look at it as a scary thing. It's like a nice thing. It's something that they can.

I totally believe in that stuff and maybe slightly off topic, although not really. But this morning I read the blog from Marin Halenga, who is the twin sister of Chris Halenga, who founded Coppafeel and who died from secondary breast cancer two years ago. And Chris had said to her em nephew when she'd said to Marin when he grows up, um I'm going to get up and going to provide money so that he can have therapy when he grows up. And then on the first anniversary of Chris's death, Maren got an email saying that her be her son had won 500 pounds on premium bonds. And she was like, it's 100 % a gift from Chris. She told him that she's going to give him money. And then it just comes into her inbox on that day. And it's such a joyous thing because it's like one of the saddest days ever. And one of the saddest things ever. But if you can believe in signs that people give.

Yeah.

Then that's really nice.

Yeah, 100 %.

And what gives you hope? When I was first diagnosed, finding stories of other people who had lived living well with especially triple negative and with brain mets was what I looked for. I sought them out. I looked everywhere I could for them. And I feel like hope breeds hope. The more you see, the more you find and you just sort of... it's easy for it to seep into everything and you start to believe it. And then now I'm five years in, I feel like I'm the hope for other people. So I think it makes you feel good that you can show people you can live well with cancer and you hopefully, I mean, no one knows what's going to happen, but you could be five years down the line and still doing well.

Yeah, hopefully 10 years down the line.

Exactly. That's my next goal.

So Breast Cancer Now has a research laboratory at King's College London, which is solely dedicated to researching triple negative breast cancer. What sorts of progress would you like to see in terms of treatment options for you?

I would love to see more targeted treatments. And obviously, as we talked about at the beginning, there's no hormone or protein that currently can be targeted. But there is things like Tridelvi antibody drug conjugate. coming through where they're specifically the cancer cells rather than just systematic chemotherapy, which obviously affects the whole body. m I'd like to see more targeted treatments for triple negative um and also more trials that are specifically for triple negative. We're kind of an aside a lot of the time. um They're bringing in things like androgen receptor testing, which m When I eventually have progression, will hopefully be able to have to see if I over-express it. um And I did a test for a, I think it's a protein called nectin 4. don't actually over express it, but there's new areas coming in that hopefully will mean we'll have more things that we can be um treated for and less harsh treatments as well. Because a lot of the treatments for triple negative are harsh because they're all chemo. chemo based.

Yeah, yeah. I know there's a lot of research in the area of creating treatments that are kinder. I know that's one of breast cancer now's priorities as well is finding treatments that are kinder.

Yeah, I'm very lucky to be on a treatment that actually I can still work with. I don't lose my hair with. I'm not sick with. I'm very, very lucky, but those IV treatments can be very brutal.

So you spend a lot of time campaigning around metastatic breast cancer and you've also been involved in the change and check campaign on ITV's Lorraine. Tell us a little bit about that.

So the sticker that I mentioned earlier that I saw in the salon bathroom was a change and check sticker and it had the sign, it's just a simple infographic with the signs and symptoms of breast cancer on it. I didn't know at the time that that's what it was. I just went about getting diagnosed with breast cancer carried on. And then after I finished treatment, I was feeling quite lost and I started following a few people from the cancer community. Cause I just wanted to, you just lose, you don't get any support as soon as you're finished. And I came across Helen Addis and one day she's the Titty Gritty on Instagram. And one day there was this poster that she put up on her stories. I was like, that's the poster that I saw. um Turned out it's the change in check campaign, which is... She's a producer on the Lorraine program or was a producer on the Lorraine program at the time. And it's a campaign that she started after her own breast cancer diagnosis. And since then 150 people have or 150 people plus, including one man, have been diagnosed as a direct result of the posters.

Those are the people that have let them know.

Exactly.

It's probably more

Yeah exactly, including Davina McCall.

Oh, wow.

She saw it on the back of the toilet doors at the studios. And every year they do a launch of the campaign again at the beginning of Breast Cancer Awareness Month. And a lot of people see it on the television, but they're also in changing rooms. The whole idea is you get changed and you check yourself. And yeah, I've been involved in that for. nearly since its inception, probably the year after I think it was.

So what are you doing with them? Because I know you've been on Lorraine, haven't you?

Yeah, we've done quite a few crazy things. So we started a choir and we released two singles. We've had two number one download singles in the download chart. We've also sung at the Royal Albert Hall more than once. We've sung with Alfie Bo at his concert. the Palladium, were on BGT.

Britain's Got Talent.

Sorry, Britain's Got Talent auditions. Then we went and sang at the Royal Variety performance in front of the King with Marty Pellow. And the most recent thing we did last year was we were invited to the Palace to sing for the King at the cancer event. So it's been a bit of a crazy ride.

Yeah! And are you a singer?

No. I stand at the back and sing quietly. oh What's that experience been like? What's it like going on TV and all these things as a result of the cancer that you were diagnosed with from seeing this campaign yourself?

I love the fact that it helps people. um If you'd have said to me before I got cancer, do you want to do any of these things? I would have said, no, thank you. I don't like being the centre of attention, but actually the joy it brings, the singing, the taking part and knowing that other people are benefiting from it, been, it's having a purpose, has probably what's given me the most joy over the last five years, feeling like I'm making a difference. It's been fantastic.

Yeah, it's amazing to find that purpose in it. It's so different for everyone. Like I sometimes look at people in the cancer world, you see certain people with really strong... purposes like Helen Addis who you mentioned who started that campaign and other people and sometimes I think what's my purpose and I don't know it's so individual.

I mean that I mean it's crazy all of that and I don't think it's going to be as big going forward because things have been shuffled around at ITV who produce it but for me anything that gives me a purpose is what keeps me going so my daughter going to work, I've gone back to work two days a week, having exercise to do, looking after my family, spending time with my husband. So anything that gives me purpose, this has just been a little bit more fantastical. And if someone had said to me, you're going to stand and sing in front of the king, you're going to meet the king, you're going to go and do all these live television shows, I would have told them they were wrong. But yeah, it's just been... It's been a dream really.

And what's your daughter think about mommy being on TV and doing all these cool things?

I think she's a bit embarrassed to be honest. No, she enjoys watching me. She likes to see me on there. She's got a lot to say about me singing around the house though. She's not all that keen on that when I'm practicing. But yeah, I think she just, I got a couple of people at the Royal Variety performance to send her a message because it was her birthday the next day and Gabby Roslyn FaceTimed her with Lorraine to wish her happy birthday and while she was embarrassed I think she was quite chuffed that they did that for her.

Although to be honest Gabby Roslyn and Lorraine probably mean less to her than they do to us being our age.

She knew who both of them were which was why it was nice.

Ok

Lorraine obviously because she sees me on the television with her and um Gabby Roslyn's got such an energy she's seen her on the television before and she was like Her little face when we videoed her was just, yeah, we FaceTimed her and she was lovely to see.

So you recently said that your oncologist described you as an outlier because you've survived for four and a half years of a not great prognosis. That's their words. The person who diagnosed you was the one that said it was not great. How does it feel to be an outlier because you've lived for longer than average?

I looked up the definition of an outlier because I love the word. I was like, it's nice to be called that. It's not nice that for triple negative and for those with brain mets, the stats are very different, unfortunately, but it doesn't mean that you're not going to be one of those stats. I, the definition of outlier, I can't remember the full definition, but it says that there's exciting possibilities because it's different to the normal data set. And I love that I'm an outlier because it means that my future isn't foretold. And who's to say it won't carry on in the same manner that it has for the last five years? mean, I might, I know brain mets also behave differently as well. So if you've only got it in your brain, it's almost like a standalone cancer rather than people that have got it in their body. So yeah, I do feel like it's a really nice thing to hear.

I know that Breast Cancer Now is doing a lot of research into outliers as well and into why some people respond well.
Yeah, why some people do a lot better than others and also why some people's cancer recurs many, many years after you've been apparently cured. So, yeah, looking at, hopefully in a few years time, we'll have a lot more answers to those questions.

I kind of hope that in the future, I won't be an outlier. There'll be a lot more of us that are living longer with it. Triple negative isn't necessarily the death sentence that people... say it is and you aren't a statistic, so live like it's going to be okay, I think.

And also some people, so you might feel, you might seem like you're on the more average trajectory because you're stopping responding to treatments and you're moving on to the next line of treatment, but actually you never know. Sometimes people do really badly on a couple of treatments and then they find one that just works really well for them and they have... quite a few years on it.

all it takes is that one drug that your body responds to. And that's why I hope that there's more stuff coming through for us because it would be nice to have those targeted treatments and the things that they're now picking up things that are specific to triple negative.

Yeah. For people that have had triple negative breast cancer, not metastatic or secondary, what should they be looking out for?

So it's the same for anyone who's had primary breast cancer. I would say just to know you're normal really. I think it's the same as for before cancer. You have to know what's normal for you. And if you start experiencing anything that is different, whether that be a pain or a weakness, or you're not being able to stay awake or you're feeling nauseous all the time or you've got headaches or... I never had headaches before I was diagnosed and you can look back and maybe think, or maybe that was something or that was something, but just knowing you're normal and advocating for yourself, don't leave it.
If something comes up, ring up and get an appointment. I think that's really important.

And also hearing what you said at the beginning that you weren't given a full body scan or a brain scan when you were first diagnosed.

I would request that, especially for triple negative, because most of them are. grade three cancer. I say most that's possibly an exaggeration but a lot are grade three which is a red flag. I would just be saying please can you scan me to make sure.

Is there anything else you'd say to someone who's been recently diagnosed with primary triple negative breast cancer?

Knowledge is power. Ask questions if something doesn't feel right. ask more questions and push back. If you're not happy with the care that you're getting, you can ask for a second opinion. You can ask to have those. I mean, I never realised I could have said, you know, I would really prefer it if you did a body scan. I just took their word for it. But have hope as well, because not everyone will go on to develop secondary breast cancer. I was very unlucky and, you know, there are others out there. who are doing really well.

Yeah, absolutely.

We've had some of them on this podcast as well. hopefully even though, you know, we, share the stories of people with metastatic cancer, we also share the stories of people that have, that are luckily 10 years on from drug negative diagnosis and have hopefully put it behind them. So there's lots of hope there.

Speaking of hope, you share your story on Instagram at my secondary self.
What do you gain from that community?

It's a bit like a a journal for me. I just put the things on there that mattered to me. I'm not someone that posts because I feel like I should post. I post when something comes up that resonates with me. I use it to connect with other people. I found other people to talk to. I've made lots of friends like you, Laura. And I just want to help other people as well. I was looking for that hope when I was first diagnosed and now that's me able to give other people that hope.

One of the things about metastatic breast cancer and having hope is putting things in your calendar to look forward to. What have you got?
I know you said you've got problems with your calendar, so your husband has to help you manage it. But what have you got in there that you're looking forward to?

We've not got much planned this year, but we're doing our garden. And especially with things like lockdown, the garden was such a haven for us because I couldn't go anywhere. So we're going to make the garden lovely this year. I've got a walk for the Marsden next Sunday, which is a real challenge for me. My feet aren't looking forward to it, but the rest of me is, I get to spend the day with my sister and my best friend and Paul and Ella are walking with us for the last bit.

So you're walking from the Royal Marsden, Chelsea, Fulham branch to the Royal Marsden in Sutton, which is quite a long way.

Yeah, is. Especially for my feet with Catecytabine side effects. We did it last year and it's such an amazing day. It gives back to the hospital that looks after me. And it also, again, it's something that brings hope and joy for a lot of people. So many people walking for such amazing reasons and in memory of people and because they're doing well or they're thanking the hospital for curing their cancer. It's just a brilliant day.

And do you manage to look much further into the future than next year or the end of this year?

So when I was diagnosed, my primary was when Ella just started reception. My secondary was as she started year two, and I didn't think I'd see her finish school. And this year she's moving on to secondary school. So while I don't ever dare to look too far, I actually manifested seeing her in her secondary school uniform. I get emotional seeing her in a secondary school uniform and going to secondary school. my next, while I don't tend to book holidays next year, I'll always book them for the current year. And I don't tend to assume that everything's going to be, I'll be well. I like to have like a goal. And for me, so my goal was seeing her finish primary school. And then next time will be, I want to see her finish her GCSEs and finish secondary school. So I'm giving myself another. Five year goal.

Yeah. Okay. Amazing.

Well, I really, really hope that you get that and way beyond as well.

Yeah, I'm sure I will.

Yeah.

So, so finished with the question we ask everyone on this podcast, what, what's the one thing you'd like people to take away from this episode?

Always have hope.

It's a very succinct and on point thing to share. So thank you so much, Nikki, for coming on the Breast Cancer Now podcast.

Thank you.

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