This podcast contains the personal stories, opinions and experiences of its speakers, rather than those of Breast Cancer Now.

This episode, I spoke to Anna, a patient, and Vic, one of Breast Cancer Now's nurses. It was a fantastic dynamic between the three of us because Anna has been through some quite gruelling, quite unusual experiences, and Vic was there for support, which I think perfectly demonstrates exactly what Breast Cancer Now's nurses are there for. Anna has had some very difficult physical and mental experiences. with her breast cancer treatment that have left her with quite severe PTSD. So we did talk about that a lot. Also talking to her children, how supportive and amazing her children were throughout her treatment. And then we spoke to Vic quite a lot about the support that Breast Cancer Now can provide and ways of dealing with the sometimes unusual and unexpected things that you might get with breast cancer. I think I would like to reassure listeners that everybody's experience is completely different and although Anna has had a particularly traumatic experience with her treatment, that is not necessarily how it's going to be for everyone. Please do listen to this episode and enjoy the conversation with Anna and Vic and also know that support is out there if you should need it.

We have two guests today, Anna and Vic. Anna was diagnosed with triple negative breast cancer when she was 34. She's written about her experience and the effects on her mental health. Vic is one of Breast Cancer Now's nurses, and she's here to provide a bit more background on triple negative and to answer some of the most common questions. Anna and Vic, welcome to the podcast. Thank you. So Vic, I'll come to you in a little bit and we'll get you to explain what triple negative breast cancer is because I know a lot of people listening might not know exactly what it is. But Anna, let's start with you and your story. Could you tell us how you came to be diagnosed with breast cancer?

Yeah. Funny story. I'd actually been at the breast clinic the year before and I'd felt some lumps. Went in for a scan, everything was fine. They just said, it's just fatty tissue. It's not a problem. And so to be fair, when I literally rolled over in bed and just the position that I was in, I just had my hand like on my chest and you couldn't deny that there was something there. It was so prominent. We'd lost my auntie the year before to breast cancer and my dad to lung cancer. So me and my sisters had always been quite vigilant with checking. It literally felt like it had just appeared overnight under the skin, it literally felt like an egg. It felt huge. And I think I kind of knew because of the family history. But I still put it off a couple of days before going to the doctors. It's like, when you hear it, it's real and you've got to deal with it. And to be fair, I went to the doctors and he was brilliant and he said, do you know what? It feels just like a cyst. But because of your family history, we'll send you, we'll get you checked out. Breast clinic rang that afternoon actually and I went on the Friday. The consultant that I saw said exactly the same thing, we'll send you through for an ultrasound, we should get it drained, we can send you home. And yeah, it was there and it was just this big black mass on the screen and I said that's not a cyst is it? She said no it's not, I'm gonna have to go get somebody else, we need to take a biopsy. In the interim, my mum had been around and she, while I was waiting for my diagnosis to come through, and she said to me, my sister was the only one, the other person that knew that I'd been. And she's like, I need you to just be really vigilant because her other sister, who my auntie who lives in Australia had literally been diagnosed the week before.

With breast cancer?

With breast cancer, yeah. I said to her, I told, I kind of just said to her, look, I said, I'm not gonna lie, I was at the breast clinic last week, they've taken a biopsy. I'm gonna find out next week, it was, like I said, I think I knew anyway, but then I was sat waiting in the waiting room for so long. I think it was now like an hour and a half past my appointment time.

For the result you mean?

For the results, yeah. And when I went in, because... I knew what my auntie and my dad had experienced the previous year. When they said to me, oh, we've got a breast care nurse in there, was like, okay, here we go. And yeah, it was, I mean, the consultant was absolutely amazing. Like all the staff were absolutely amazing. But I remember just thinking like, how do I tell my family? Like I've got two children, they would have been eight and nine at a time. And the only thing could think of was...

It's okay.

Like how do I tell them? Because their first brush with cancer was watching my dad.

Yeah.

But yeah, so I went through for another ultrasound and the following day they booked me back in for the ultrasound mammogram and a titanium clip fitting, inserting, and we decided that we were going to go to chemotherapy radiotherapy. But yeah, was literally, those were my options. That was it. It was the three. From my diagnosis to starting chemo, it was just less than three weeks. But yeah, it was just a whirlwind, I think you just, you get so many people will say like, oh, you're a warrior, you're a fighter, you're, you know, you this and the other. And in your head, you're like, yeah, you know, they mean well, and they're coming from a good place. But at same time, like, I don't have a... I wanted to swear then... I don't have a choice. My life is in the hands of strangers now and they do talk to you when you're there and then they always say, and you'll probably say this actually Vic, but don't google it. Whatever you do, don't get on google. Don't go on so like just, but you do, because I'd never heard of it before. I think at the time actually, what I had found, it said it was over the age of 40 and I was 34, well actually, and I was like, I said to my sister, well that can't be right. And then you were more likely to get it if you were, if you were black or you had the gene. And then I was like, we must have the gene, we must have it. We went through the gene testing, don't have, PALB2 had just been discovered. So most people have heard of BRCA1 and BRCA2. PALB2 was a new one. They'd only recently discovered and so I was tested for that as well. And everything came back clear, which was amazing, because especially having children, having a daughter, my biggest fear would have been like for them to have had it. But also if I had it, my sisters could have had it, you know, and it's, your brain starts working overtime, but it was, sorry...

It's okay, it's okay. Yeah, there's lots to talk about there. I'd like to just ask how you are now in terms of your treatment and everything?

Mostly okay. There is no ongoing treatment for triple negative. It's literally a case of I have a mammogram every year so I'll be going back for one of those in March again and that's just... I have got PTSD from it. But it's just a case of working through it.

How long ago did you finish your treatment?

I actually, so I had my first chemo session, first in November 2019, and I had my final chemo session on 17 January, 2020. I think it was only my second or my third round. My body was recognizing it as a threat. I ended up having a massive panic attack actually, and I thought I was having a heart attack, it was that severe. My oncologist, she was just amazing, she just said, Anna, we're gonna change the chemo. And it was, they put me on something called Paclitaxel Albumin, which was like a coated version of the one that I'd been on. But there was no pre-meds. It was literally like, I think it was about half an hour. I was sat there having it. And it was every two weeks. So I was poorly for like the first week, but then I had like a week to just be a human again. And because previously it was like, I had it on a Friday, by... Sunday morning, my hands and feet were completely numb and I knew that the side effects were kicking in. Thursday, I'd start feeling okay. Friday, it was back to it again. To go from the size that it was initially and in such a short space of time and with such a little chemo, because I literally would watch them bin the chemo in front of me some days, because they were just like, we can't risk giving you this, it shrunk to the size of the tip of a ballpoint pen. And I actually let her, I said to the nurse, was like, can I take photos of the MRI, because on one of them it was like that and on the other one there was like hardly anything there at all. And it was just amazing, but I still had to go through the chemo and the surgery and the radiotherapy to limit the chance of it reoccurring because the risk of it reoccurring is really quite high. And I only had to have one lymph node removed. My mind even to this day is just blown because of how, like I said, how quickly it was growing for it to just stay in that one location for it to just be contained. But yeah, there's always this, I suppose this fear that, you know, like every pain, every other like lump or bump you feel in the body, it's, oh my God, it's back. It's, you know, it's after, it's after surgery. In fact, I'm trying to think it was a few weeks after surgery, but I, my son bless him, he went to lay on me like kids do, he's just got quite a heavy head. Went straight into my boob and. It was unknowingly, it had kind of ruptured a little bit. So it had bled into the space where they'd actually taken the tumor from. And I was back in the shower a couple of days later, fell in exactly the same place again. I literally, and this was, I think it was, it was like a Saturday morning or something. And I remember just collapsing on the bathroom floor and just being like, oh my God, it's back already. Like, how can it be back already? But yeah, and I do think it does, yeah, you just, think, am I actually gonna survive this?

You know, we're on the helpline at Breast Cancer Now, on our helpline and on our written Ask Our Nurse service, which is like a written helpline. We often hear from people that have googled and stuff. The thing is, it's not regulated, so anyone can write anything. So it's really hard, it, to try not to do that. But we often say, how helpful is it to google? Often it's not. And there are other support services like our help plan and our Ask Our Nurse service that we encourage people to ring so that we can put the Google bits where they belong and actually get to the facts where we actually are. And it's really tough though, it?

Absolutely, because you want to research everything. I was like, OK, what else do I do? Like, they're doing this, but what can I do to kind of speed the process so far to just try and make it go away as quickly as possible? But I think, yeah, it's just I mean, I did have a really great breast care nurse at the time, and she would ring up every week actually to check in. But I couldn't even say the words I had cancer for about two, three months. You know, which is why I wrote about it, because actually writing something down is so much different to actually those words coming out of your mouth. When I told my family, I just had to message them. I couldn't even say it.

Yeah, absolutely. I had sort of a similar experience, actually. I think one of the things that I hear most commonly in people I know with triple negative breast cancer is, the element of how scary it feels when you finish that treatment because you know you don't have the ongoing treatment that sort of feels like a safety blanket where in oestrogen-positive breast cancer you have that Tamoxifen drug that you can take for years and years and it just makes you feel a little bit safer. What can people who have been successfully treated for triple negative breast cancer do to reduce their risk of it returning over the following years?

I think it's always important, Anna, and you said about this as well before about being breast aware.

Yeah.

And that's really hard, isn't it? Because after you've had treatment and surgery, it's like, my goodness, what's normal? I don't know what normal is. It's hard, isn't it? And then often people find that once they finish their treatment, it's been described as a roller coaster ride. And there's a lovely article by a psychologist called Peter Harvey that describes it that way. When you're in your treatment waiting for your diagnosis and it's like the ups and downs, but then when your treatment finishes, you get off that proverbial rollercoaster ride and often Anna, that's the time where you think, OMG, what was that all about? But your treatment team aren't around and not everybody's around. So that can be a really vulnerable time, a really long time.

Yeah.

And it doesn't stop. You know, and often, it's at a time, isn't it, where maybe yourself and other people around you are saying, oh, fantastic, treatment's finished, let's get back to normal. And you're like, holy mo, I have no idea what normal is anymore. And so it's about, you know, you mentioned about your son, you know, almost knocking your breast and that being a lump. Oh, my goodness, what does that mean? And I defy anyone with a breast cancer diagnosis or without a breast cancer diagnosis that doesn't have a headache or backache. But when does that become a headache or a backache or when does it become something that we need to worry about? It doesn't go away. And that's why support is so important.

It's so yeah, I think when you go from literally being at the hospital for me, because I was having the chemo weekly as well, I was there literally sometimes two, three times a week to go from that to suddenly like I nothing. Just nothing. So all those people that kind of knew what it was I was going through weren't there anymore.

Yeah. That's when many of us then resort to taking control as much as we can. So that's when we say, right, I'm gonna make my diet better. I'm gonna eat more vegetables. I'm gonna drink more water. I'm gonna cut down on alcohol. I'm gonna not smoke if I was a smoker. Try and take control of other points of my life where I'm perhaps very stressed or, you know, cut things out of my life that aren't working for me. Are there any other things that people can be doing to kind of just protect themselves as much as they possibly can?

Yes, Laura, and you've mentioned those, isn't it? And it is about trying to live as well as you possibly can be, you know, with having a fulfilled life as well. Taking regular exercise, a lot of research has been done into that and how valuable that is. Aim for 30 minutes a day. And I think Laura when we talk about exercise, you think well you've got to have a gym membership, you've got to, but actually that could be walking the dog. It could be all sorts of exercise, you know, with your children, if you have children, if you have grandchildren, you know, all sorts of things. Keeping an eye on your alcohol intake. That's sort of come more to fruition now that should be limited. And more interesting, smoking. Initially smoking wasn't thought to be linked to breast cancer, but actually there's more links to that now. So, and it's best for our general health, isn't it? Not to smoke. But you know, I've supported patients that have smoked before and they get a diagnosis of breast cancer and the first thing they need to help relax them is a cigarette. You know, so it's about really recognising people as a whole, isn't it? And you know, their situations, but I think they're the main things. And the most important thing as well, Laura, is about being breast aware. And we know that a lot of women actually are not breast aware. And there's different reasons for that. It may be cultural, it may be denial. And some people, and Anna, you said about this, you know, when you found that lump in the shower, you're like, oh, no, I don't want to know what that is. And people can have that. But we know that if there is something that's amiss, that's not just a lump, it may be skin changes, may be a nipple discharge or a nipple that's gone in, we call that a nipple inversion, or anything that you think is different from normal. It's really important to get it checked out so that if it is a breast cancer, it's detected early and the treatment options are so much better the earlier it's detected. So I think that's really important. We can't underestimate that.

And just to add to that, we do obviously also have to be the rest of the body aware as well, not just breast aware, but you know, obviously if you've had breast cancer, you then have to be aware of the signs and symptoms of secondary breast cancer and that means the whole body and absolutely breathlessness and back pain and hip pain and bone pain and everything.

And that's hard Laura isn't it because we spoke about you know a headache and a backache. Well when does that become a problem because I defy anyone that doesn't have a headache or something. But you're right Laura signs and symptoms of secondary breast cancer is that symptoms are persistent, they don't have an obvious cause and they don't go away.

Anna, we've talked about this being a type of breast cancer that can be more likely to affect younger women. You obviously don't know what it would be like to have this breast cancer if you were 60 years old, you were diagnosed at 34. What elements of the experience for you were heightened because you're a younger woman or what was... What most affected you?

I think my children.

You'd already had children, of course, so you didn't have the...

Yes, I didn't have to worry about that. They are 13 and 14 now. And it's been, I'll be clear, fingers crossed, five years this year. But they were just amazing. Like, cannot, I mean, I remember sitting with them and... I felt strong enough at that time. I was like, I've got to do it now. I've got to do it now because I'd just been in tears for about 24 hours. My daughter just burst into tears. She was like, you have to get rid of it. And I think she cried solidly, no exaggeration, for about three hours. She just kept coming in and having cuddles and then going away. And my son just really went in. He just stared at me like he was kind of perplexed, what I'd said. And he went, yeah, but it's not like it's, I mean, it's not gonna kill you, it? It's not a real one. And I went, what do mean it's not a real one? He went, well, it's in your boobie, isn't it? That's the way that he said it. And I was like, it's like, it's not like you're gonna die. And it really, was like, I can't lie to him. And I was like, I'm gonna really try not to.

What an amazing thing to say to him.

And my daughter, I caught her on the phone later on to her friends, but she was like, yes, and basically you're only allowed to come to the house if you're gonna be on your best behaviour, because my mum's not very well now and I'm not gonna have you around if you're gonna be screaming and messing around. I was like, bless her, she really, she just took charge and it was...

What was she, nine?

Yeah.

Eight or nine?

Yeah, she'd have been nine. And at such a young age was just amazing. But they got me through everything. They were like my 'why'. Like, okay, this is why I'm doing this. I think the kids were the biggest impact for me.

You know Anna, it shows doesn't it, and your beautiful children just show how resilient children can be.

Oh, massively, yeah.

And also by being open and honest with them, it's probably one of the hardest conversations you'll ever have in your life. But you talk now of the bond between you and your children and there's not many positives of having a breast cancer diagnosis at all, but that just seems to really shine through and you're just an amazing mum.

We have, I've always been... a bit of a different parenting approach to most. I'm incredibly honest with my children. Anything that we're going through as a family that affects them, I will, obviously, there's some things they don't need to know about, but the big ones that are really gonna affect them, we have a conversation about it, and we always have done from them being really small, because I think it's really important. My daughter said to me last year, I can't remember how we got onto the subject, and she says, I think, she says, one of the big triggers is when you say, I need to talk to you. And I was like, wow. And how many times do we say to our kids, I need to speak to you. Can you come here? I need to speak to you a minute. And she was like, when you say that, I immediately think you're poorly again. And I was like, oh my goodness, that's really, that's really hard to hear because you want to think that you've protected them as much as you can. Actually at one point, I mean... during chemo, I had A4 pieces of paper, sellotaped to like all the doors in the house in case I collapsed when I was on my own with them. So they knew who to ring and what to do. You know, like go straight to the neighbour's house. One of you stay with mum and ring Nana or an ambulance or, and that's such a massive weight and responsibility to put on such young people. But they just took everything in their stride, absolutely everything. I mean, your initial question was like, how has it affected me when I was being a little bit younger? My children massively is the main one and I think the second would be hormonally. My period literally stopped after my first chemo session and it came back in the Easter and I remember ringing my sister, it was Easter Sunday and I was like, happy Easter, I've got my period back! Everything's going back to normal. But it's just been all over the place and I'm 99% sure that I'm perimenopausal courtesy of chemo because of all the symptoms and the way that my cycle is now. But it's amazing actually how when you go to the GP, the first thing they'll say to me is, oh yeah, but you're not old enough. And I'm like, yeah, but I've been through chemotherapy. And they... They still don't know like all the side effects that I have suffered. And to be fair, this last maybe six to 12 months has been the easiest. The side effects don't just go away after the like 12, 18 month period that they tell you about. And you're rocking up to the doctors like every the month with like, well, this is really bothering me still and I've got this and I've got this and like, how do I deal with it? And they have no clue where to place you. No clue at all because actually, your symptoms are those of certain conditions, but actually you don't have those conditions. It's just a side effect of your body recovering from the chemo and what it's been through.

Well, I think that is when it's great to get in touch with Breast Cancer Now's nurses because they have that very specific, whereas your GP, clue's in the name, general practitioner. I think that they don't necessarily have the full grasp of everything that you've been through.

Yeah, I think it's really important. I didn't even know that I could do that. You know, it was only the other year when I spoke to, I think it was somebody at Breast Cancer Now. And I was like, I'm really, really struggling with my mental health.

And I'm really glad you did reach out to us, because at Breast Cancer Now we are here for you and for anyone who's affected by breast cancer. But specifically we have support tailored for younger women. So that's women who are 45 and under. And well, just last weekend we had what we call a Younger Women Together event in London. We hold them throughout the UK. Sometimes they're one day or two day, a residential. And Anna, it's difficult to describe the enormity, the power of younger women coming together, to be with other younger women who absolutely understand what it's like you know, and like you say, our GPs are generalised and they're generally so good at, you know, they have to support so much, don't they? And we work really closely with GPs and many GPs actually signpost to our service. which is so good, but to see younger women come together and just, you've heard those words, I've got a breast cancer or, you know, and breast cancer at a younger age, many women will go to the breast clinic because the GPs have referred them. You know, younger women have been breast aware, they've gone to the GPs, they've been referred and it looks like it's just, and we know that with triple negative breast cancers, they can initially appear like that, but just on the first presentation. And then so to go back and many people when that happens, they haven't got anyone with them because they're expecting to hear it's a cyst and then it's not. And the enormity of that and the trauma that that causes, know, and you are at a time in your life, aren't you? You've your children to think about work, career, all those things. And anyone who's affected by breast cancer can have issues going on in their world. But as a younger women, a younger woman, I should say, it's different and your needs are often different. And I'm really glad that you've reached out to Breast Cancer Now and to our helpline. And I would really recommend it. I'm a little bit biased, obviously, because I work with them. But I just see what a difference it makes. And I think what we have that our friends and our colleagues in the NHS don't have is time. So you could be on a call to the helpline and we might be on the phone for an hour. That's quite a luxury in this day and age, isn't it? And with our Younger Women Together events, certainly on the two-day residential, the accommodation is paid for people that they can apply to our access fund if they need any support for travel. So you just cannot underestimate the support and what that means.

Yeah, it's so easy just to battle along on your own, just trying to get through it because that's all you can do. actually, if you stop for a minute and think about how much it affects us, and obviously breast cancer at any age is awful and difficult for many different reasons. But as a younger woman, as you said, Vic, you're either hoping to have children and struggling with fertility, or you might have young children, you might be a single mum trying to do things on your own, looking after those young children, breaking the news to those young children. But you've also probably got a job. You're probably trying to work and earn a living.

And in a relationship, whatever. You know, so there's so many plates spinning. And often we say at Breast Cancer Now that you need to look after yourself before you can look after other people. And we're all human, aren't we? And there's only so much you can take. Sometimes just ringing our helpline or doing a written inquiry through our Ask Our Nurse service can just be huge because you're not going mad.

Yeah, you feel like, I'll say to people, I don't actively remember these anniversaries, but my body does. The week I got my MRI results where it had shrunk to the tip of a ballpoint pen, two days later I had the EC chemo and... On the Tuesday, it four days later, my mum found me on the bathroom floor, I had collapsed. I had no symptoms, nothing at all. I had a water infection. And EC, they told me at the time, it's renowned for irritating the bladder. And yeah, when the paramedics arrived, my blood pressure was like 70 over 40, I was on the verge of sepsis, I think, where they were, with what they were dealing with. I assumed because it was late at night that my children were asleep and it turns out they had woken up when the paramedics had come and they watched me from the window going into the ambulance. And I only found that out literally this year. We were having a conversation, this year, last year, we were having a conversation about it all and everything that had happened. But I also really, I think a really important thing to mention as well is that day, I begged my mum not to go home. So my mum would come over and she would take the kids to school. She'd stay with me for a bit. She'd go and do some shopping, do a bit. And she'd come back. She'd pick the kids up, come back, give them tea, put them to bed. And that day I just knew that something was not right. I knew, and I said to her, was like, please, please do not go home tonight. Please can you stay? Cause something's not right. I know that something's not right. and thank god she did, she just said she heard a massive bang upstairs and I mean, I can't remember. And yeah, there I was. But I do think it's really important. Like if you feel like something is not right, like tell somebody, whether it's a relative or you pick up the phone to like the breast care unit and just say, look, I really don't feel okay. Like I think something's wrong. Because that literally saved my life. So every year I get a calendar and I will write on, I'm big on positive mindset and everything, I'll write on this year, five years cancer free. That's my thing. That's the only thing that I'll write on in regards to what's happened. However, come October time, my mood starts to drop and I start having panic attacks. Usually I will wake up, this is when the PTSD thing kicks in that really nobody speaks about. I'll wake up to sound of somebody banging on the front door, which was the noise of the paramedics. And that's only happened once this year, well, this January.

Do you mean someone is actually banging with the post or you mean that's in your...

No, it's like literally waking up in the middle of the night.

So this is post-traumatic stress disorder that you're talking about. Let's talk a little bit about that. I mean, it's very clear that you've been through an incredible amount, way more than anyone should have to go through in their lifetime. So it's entirely understandable that you would have huge mental health effects. But would you be comfortable sharing with us a little bit of the experience and how you would define PTSD?

I suppose, I think when you see it in film, it's like flashbacks. People expect that and some people do. And like for me, like I said, like January time comes around and actually sometimes when I'm going through really stressful periods in my life or I'm not particularly well, I will wake up and it literally sounds like someone's banging on the front door because that's what the paramedics did when they first came in. And then prior to that, like I would kind of, I'd be awake and I'd be trying to control my breathing because it would like startle me awake. I'd smell the hospital or I'd hear the beeping. And I'm like, I know this isn't real.

Yeah, that's the sort of PTSD that you hear about when we're talking about soldiers coming back from war. I've been listening on audio book to the Body Keeps the Score.

Yes.

Have you heard of that book? I think someone on this podcast might have recommended it actually, but talks a lot about PTSD.

It's just amazing. I can't remember what I was listening to actually. It was a doctor saying, a lot of the time when we're working with people who suffer with anxiety and depression and stress, we work with the brain. We don't focus on like actually what's going on in the body. But the body absolutely does keep the score. And that's when it comes up to my chemo start dates and my diagnosis date. And what I've tried to do actually during the last few years is, kind of replace them with good things. Making sure that instead of like procrastinating on like what happened, just going that's, yeah, that's in the past. It doesn't matter. We're to do this instead. And now it's going to be amazing. This is going to be an amazing day rather than it being a day that's associated with cancer. But yeah, like I said, my mood just drops and every year without fail I'll be like, why am I feeling like this? Why am I feeling like this? And I'll start having these panic attacks. And I suffer with peripheral neuropathy. So I mentioned earlier, my hands and my feet would go numb on the Sunday about 11 o'clock. It would start my fingertips every Sunday and it was like clockwork and I was like, okay, here we go, would kind of brace myself for everything else coming with it. And it's not just, it wasn't just like the numbness in my fingers and in my hands and like the whole palms of my hands would go numb. And up until last year, I'm a holistic therapist and even massaging, the palms of my hands would go numb occasionally and it would, I'd be like, okay, it's fine. But the big thing was the muscle weakness. So I would, could be sat watching telly and I'd go to get off the sofa to do anything and would have no strength in my legs. Coming back to the PTSD, so with the peripheral neuropathy, with this weakness in the muscles in my arms, like I would have to hold, when I was going through treatment, I would have to hold, like my drink was two hands because it got quite bad, like I'd be really shaky with it because I just felt like had no strength. You talk about, like recovery-wise and lifestyle, like I got really into the gym after treatment, after Boris released us again after the second lockdown, I was like, right, I'm gonna get fit, I want to be healthy, I wanna be strong. And I was doing really well. The issue that I had every time was that when you're out, your muscles get tired. My brain confuses that with my muscles a week and I will literally have a panic attack. But yeah, that's when it becomes quite an issue. It's like being in the middle of gym class or just in the middle of the gym, and with a pain in the head and just being like, I can't breathe because I'm doing a Bulgarian split squat and my legs starting to shake and it's gone weak and wobbly. And now I'm trying run off to the toilet, so kind of...

And the thing is, that's really real, isn't it?

Yeah.

And I think this is what we're trying to understand, I say we, researchers are trying to understand better is to develop treatments that are kinder, smarter, so that you're not exposed to those side effects. And the new treatments that we've mentioned, Laura it's great but we have to be aware of the side effects that those can cause and that's a great challenge in the area of research to look at kind of smarter treatments and look well do you need that treatment? Does that person need that treatment and not? So that you can live well after your diagnosis, but what you're going through is really real. And I think it comes to that point, doesn't it? That, you know, you're five years post your diagnosis and so many people would say, oh, come on, Anna, you know, it's five years ago now. But I think that's what we need to realize, recognise and respect that those side effects can be long lasting.

Absolutely.

And there is support for you out there. There really is. But I think it's really important to be heard and listened to, isn't it? So that we understand, oh my goodness, what it's like to have gone through that, I mean, awful experience that you went through, because it's really real.

But again, you know, I've been to the doctors, I've been for MRIs, I've been for nerve testing, I'm fine. Everything's fine. So it's not that it's, you know, it isn't still there. It's like, and this is what I'm like, this is quite clearly, it's become a psychological thing.

Yeah, absolutely.

But it's the same with the drink, the reason I don't drink, because with the chemo, I mean, I remember walking through Leeds with my sister, she took me for my wig fitting, and I couldn't even, I couldn't look up, I was staring at the ground, and she was holding my hand, because I couldn't walk in a straight line, I was literally, I felt like a drunk person. And so now, like, having a drink, the minute I start to feel a little bit tipsy, I'm like, no, I can't, I can't do this, I need to stop. Because it takes me back to that. And again, it's like, I don't want to remember that. I don't want to feel that way. And I've been labeled dramatic or overreacting when I've been out with friends and like, oh, have a shot. And I was like, I don't want a shot. Can you please, like, I don't want to stand here and talk to you about how that's going to trigger a bloody PTSD episode. And I'm going to have to, oh, can I say bloody?

It's fine, yeah!

I don't want to have to stand there have a conversation with you about, but then because of that, I've just, I mean, I just stopped going out. It was just easier than having to have those conversations with people because you tell somebody you don't drink, wow, what's wrong with you? What? If I didn't like ketchup, wouldn't ask me what was wrong with me. You know, it's...

I think two things to say, one for you and one for our listeners. The one for you is, and this is me, Laura, talking, is... we don't hear about people talking about PTSD that often, at least I don't in the breast cancer community. And it's very clear to me that you have been through an extraordinary experience and you've had some very bad experiences and reactions to the drugs. And clearly this, the whole complete experience that you've had has led to this very extreme mental health ongoing issues that you're having. So I just wanted to acknowledge that.

Yeah, you know that's me.

And I've got tears in my eyes, because I can sense how bad it's been for you. And the second thing that I just wanted to say to the listeners is that it isn't always this bad.

No, it's not.

You have genuinely been through a horrible outlier experience.

Yeah.

But most people who have chemo do not have these horrible reactions.

Yeah I think that's really important.

You know, there's a lot of treatment that is kind or kinder than it has been in the past.

Absolutely.

And I don't want to scare anyone by listening to your experiences!

No, no. I think that's really important.

And I echo what you say and it's, not dissing your experience, Anna, because it's really weird, really weird. No, that wasn't the word I wanted to, it's really REAL!

I am really weird!

I'm not going to say that! But a lovely oncologist I used to work with, who I had the pleasure of working with, said chemotherapy shouldn't floor you. And you see it Laura, don't you? You know, on the TV and it's dramatised. And I think, Anna, it's like that, isn't it? But actually, treatment shouldn't be like that.

I'd like to, I mean, I'd like to add to that by saying, like, I literally would, they go through a checklist with you, don't before you have your chemo about how you are feeling at home. Like are you suffering with this, this, this? And you've got to score it out, is it like out of 10, I think, at the time. And there would be a lady sat next to me or opposite me, literally going through the same treatment, and she'd be like, yeah, I'm fine, yeah, I'm fine, yeah... Almost every time. And I would be sat there going, well, why is my body doing this?

And the thing is, Anna, I worked with another oncologist and she explained this, and it comes back to a wine analogy. So, Anna. We both have a glass of wine. Okay, it's the same, it's the same size, the same measure. Now I have my glass of wine and I'm a little bit tiddly. You have your glass of wine. I know this isn't the truth because you don't drink wine, but if you just go with me for this. But you have your glass of wine and you're like, oh, that was nice. Can we have another one? Now we've both had the same glass of wine, but how our bodies react is very different. And I think your story sort of demonstrates that. And it's about really talking to your treatment team and doing it, you know, and really saying, you know, what you're feeling with it. And it's hard because when people have their first treatment of chemotherapy, they don't know how they're going to be with that proverbial glass of wine.

And on that point as well, because like you said, it's really important to actually take time for yourself and to rest and know that you need that. Like I've had so many women reach out to me who know that I've been through it, who are going through it or who have been through it in the last five years, who just went back to work like everything was normal and then having to take months off because it suddenly hit them with what's happened and they're struggling to cope with it mentally. And I don't think really like the emotional and mental side of it really gets spoken about enough. People just see it as the physical side. And I don't think it's like, people are like naturally ignorant to it, but I think because it's not, which is one of the reasons why I wanted to blog and put it out there. was like, no, people need to see like all the sides of this. Like it's not just a pink ribbon. You know, it is a real one. It's not a pretend one like my son thought because it was just in my boob, you know, it's devastating. know.

And you know, at Breast Cancer Now we have services, Someone Like Me, where that buddies you up with someone that's been through a similar experience that can be really useful, can't it, either, for people going through treatment and post-treatment and that, what a relief to be able to talk about it's someone that understands. And also our Moving Forward courses, you know, at that vulnerable time, you know, when treatment finishes and, what was this all about? So I do urge anyone to, because everything that you say is real, isn't it, about that, when that treatment stops? When it stops, you do just feel like everybody that knew kind of what you were going through, and that you kind of felt okay talking to them, because let's be honest, like, cancer's not a fun subject to talk about, is it? And so you don't always want to speak to your family and friends about it, because you think, oh, are they gonna want to listen? Are they gonna think that I'm being really negative, or I don't want to be a burden?

Yeah, that's what I was gonna say about the... the worrying and like the PTSD and feeling really lonely after treatment. I'm absolutely not plugging myself here by the way. Every month I...

Anna, plug yourself!

I'm like so bad at selling myself, it's ridiculous. But every month I'll offer a free treatment up to somebody that's going through breast cancer or has been through it. Only, and like I'm not oncology trained, so it's literally like it's angelic reiki or crystal healing because it's non-invasive.

So you do holistic therapies, to anyone listening.

Yes, I do. I'm a holistic therapist.

And one of the ladies that came in, she was an older lady and we were having a bit of a chat beforehand and she, and I felt so, I didn't feel as alone when she said this. So she had, I think she was HER2. And so she was on some, ongoing treatments and medication. She was on it for actually quite a long time, I think nearly 10 years. And she'd spoken, she was like, should I still be on this now? And they were like, well, actually, you could probably come off it. And she said, since they've taken her off it, all she can think about is, oh my god, what if it comes back now? And I was like, it's not just me. Which sounds really silly, doesn't it? And I actually said to her, said, thank you so much for sharing that with me, I said, you don't understand actually how important it's actually been to hear that.

Can I just ask you, just going back to the PTSD, what are the tools that you've found or the support that you've found that has most helped you with the mental health side effects?

Okay, so I meditate a lot. And meditation does not work for everybody. I have lots of heel-to-heel because I also run meditation workshops as well. But actually, meditation helps to... lower your stress levels, which immediately helps you to think a little bit clearer. I enjoy yoga, anything really that just helps to calm me down. even with like, when I do have a PTSD episode, I've tried hypnotherapy, I've tried all sorts and talking therapies doesn't seem to make it better for me. That's not to say it won't work for some people, it could be amazing for other people. anything that is really calming. I know when I start having a panic attack and this sounds ridiculous, that I will literally lay on the floor and I put my legs up against the wall. And it just, I'm sure there is a scientific reason behind how it helps.

What you're sort demonstrating, isn't it? That your PTSD existence is real, like a fear and about recurrence is real. But I guess the challenge is of you being in control of it rather than it being in control of you.

Absolutely, yeah. And it is all about finding ways that, yeah, that you can control it yourself. I do work very much with like a journal. I practice gratitude every day. And I think, and I am so grateful, so, grateful that I am nearly five years out of this.

Yes, amazing.

Because not everybody has that privilege. I think it's, and it's, it's been aware of that as well. And I do try to remind myself that when things happen, I'm like, I am fine. I am okay. I'm happy. I am healthy. Going through all my affirmations, I've got them written all around my mirrors at home. And it might sound ridiculous to some people, but I think whatever works, works. Even if it's a placebo effect, you know, like with what I do, people are like, oh, it's a load of rubbish. Like, but if it works, what harm is it doing?

I mean, I just like cancer itself is completely different for every single person, what helps you both mentally and physically is completely different for each person as well. Anna, what would you say to someone who's just been diagnosed with triple negative breast cancer?

Do you know what? When I was going through it, the number of people that said positive mental attitude, I thought if one person says PMA to me, I'm going to... throw a punch and, I was like, try and keep a positive mental attitude when you go through this. But actually, do you know what? Keeping a positive state of being and your sense of humour is massive. Make sure that you have got a strong support network around you. Like I had people, my friends came to me and were like, look, I can come and clean your house once a week for you. I had one friend that was like, if you want, I can pick up the school uniforms on a Friday and just do them with mine and then can drop them back off. Little stuff like that is massive and having people around you that can support that, but also asking for help.

We're not very good at that, are we?

We're not.

But actually even just dropping a message to somebody and just saying, don't want to, like, so to tell people, I don't want to put you out, but next time you end up to the shop, would you be able to grab me some milk? You know, or would you be able to just grab the kids from school from me? Because I'm really not feeling up to it today. You know, can you, do you fancy a coffee? Because I just want to see somebody. Actually a piece of really great advice was the counselor that I did speak to, she said to me, if a friend spoke to you about what you're talking to me about right now, and they wanted to speak to you about it, would you think they would be in a burden? And I was like, absolutely not. I'd want to. And she was like, okay. She says, you can pretty much guarantee that all your friends would be quite happy to sit there and listen to you talk. but it's the limitations that we put on ourselves.

It's us making it, isn't it, giving yourself the same kindness that you would have on somebody else. And that's something we need to practice every day.

Massively. And also, oh god, I could say so, I'm ready to be fair, but if something's not working, if you're reacting really badly to something, tell them. There were so many different alternatives there. I remember opening my cupboard up. And the number of boxes of medication that fell out towards the end that were completely unopened because they'd like, well, let's try you on this or let's try you on this or let's try you on this. There is so much that is available. And like even more so than what there was five years ago. Like I know there was a trial drug they offered me at the time, but my tissue results didn't come back in time before prior to me starting chemo. And I think it was a tablet that you had to take with the chemotherapy or the day before or something. And it had been in trial for six years, but they were having amazing results with it at the time. And I'm just like, and that was five years ago. It's like, and you've said like, there's so much more available. You know, it's like when I was having issues with the chemo, okay, we're gonna try on this one instead. It's the same chemo, it was just tweaked in a different way that made my body actually accept it.

Yeah. To summarise your advice, it's communicating basically, because-

Oh, with everybody.

Asking for help. through your medical team, but also asking for help from your friends. And I think that's brilliant advice that tell your friends exactly what you need. I need you to help me with cooking the kids dinner or dropping them off at school or washing their clothes or something. It's specific advice is always really, really great.

Vic, where can patients go to find out more about breast cancer without being too scared?

Well, the main place to go is Breast Cancer Now. Can't lie. So as I've mentioned throughout the chat today, so we have our helpline and that's open Monday to Friday, 9 to 4 and on a Saturday, 9 to 1. And we have our Ask Our Nurse service. And at Breast Cancer Now, we work collaboratively with other organisations that support people with specific needs affected by breast cancer. But I would say ring us at Breast Cancer Now. We can talk through what's going on in your world and signpost you accordingly.

And we'll put those numbers and website address in the show notes as well.

Anna, if anyone would like to know a bit more about your story and perhaps read about your experiences, where can they go for that?

So I did, like I said, I did blog through my journey, which was a very, it was an incredibly cathartic experience. Would recommend it to anybody, even if it's just for yourself. But yeah, you can find the link for that actually on my Instagram page. And that is @abholistichealing.yorkshire. But yeah, all the links are on there so people can pop by and find it.

We'll put the links to that in the show notes as well so people can just click away. and they'll find it.

Yeah, no, that's fine.

I'd like to finish with the question we're asking everyone on this podcast. Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live but be supported to live well. Anna, what does it mean to you to live well?

Oh my goodness. I mean, I try to live in my inner child every day now. I think if anything, like breast cancer taught me that it was just finding the joy in everything. And I think that is what it means to live well. Like if you can find the joy even in like the most rubbish day, it's just... always doing what feels best and feels right for you. It's just a shame that it took for that to happen for me to really kind of wake up to that and just make sure that you're surrounded by people that love you as much as you love them and just literally live life to the absolute, like live like a toddler. Toddlers don't care about anything, just, they love life. And I just think if we could, see the magic in everyday and see the joy, then we'd all just be a lot happier anyway.

Live like a toddler is great advice, it is a shame we have to have jobs!

Yeah! And you can't really get away with throwing a garlic bread across a restaurant anymore as an adult, you?

Yeah. Vic, what does it mean to you to live well?

So Laura, I guess I can answer this in several ways for me as a breast care nurse. That means me being able to support people, not me, but as an organisation at Breast Cancer Now to live well, for people to be breast aware so that they can live well, so that if they are diagnosed with a breast cancer, they can get early treatment. For me as a person, I'd like to be in kindergarten with you, Anna. I think we'd be great.

Come along. You'll be great.

And it is, I, you know, as a healthcare professional that's worked in the field of breast cancer, I count my blessings. I count my blessings every day.

Oh, that's a great note to end on. Anna and Vic, thank you so much for joining us and thank you for all that you've shared with us as well. It's an incredible amount to have to share with the world. Thank you.

Thank you for having me.

Thank you, Laura.

Thank you.

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