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Ep 17 - Suzanne Bull MBE

This episode marks the start of a little run of 4 episodes concentrating on the Menopause and Breast Cancer. I’m talking to Suzanne Bull MBE founder of Attitude is Everything, about her estrogen positive breast cancer diagnosis in 2020 and being thrown into a medical menopause, that coupled with her disability made it doubly hard to pick apart her symptoms. All that coupled with her disability made it doubly hard to pick apart her symptoms. Add a global pandenmic into the mix, it gave Suzanne some really tough conversations and hard choices. But as ever, she came out fighting.

India: [00:00:00] Hi, my name's India. This is Be More Orca :Buck the Menopause. Now, I'm not a medic or an expert or a celebrity, I'm just going through it myself. I was totally blindsided by my symptoms. I knew nothing about this stage of my life. And then I discovered neither did any of my friends. So I'm on a mission to find out everything I can explore every avenue to help us manage our symptoms and get our lives back on track. This episode marks the start of a little run of four episodes, concentrating on the menopause and breast cancer. I'm talking to Suzanne Bull. Founder of Attitude is Everything about her breast [00:01:00] cancer diagnosis and coping with a medically induced menopause. Suzanne proves to us all that we need to advocate for ourselves, do our research, and know our own bodies. Suzanne, thank you so much for coming and talking to me today. 'cause it's a really important subject that I don't think gets talked about enough. And there's a lot in the press at the moment about H R T and that's a good thing in many ways. But for those women who can't, or choose not to take it, then you're sort of left in a bit of a black hole, aren't you? You were diagnosed with breast cancer back in March, 2020. That's a date that's indelibly linked on all our brains, isn't it? Can you talk us through that? Suzanne: Yeah, sure. So I had no idea that I had breast cancer at all. I didn't feel a lump. It was picked up on an annual mammogram in the hospital, but a couple of [00:02:00] months before that I felt really, really strange. I was really busy. I was really busy at work, but I had the urge to like really party all the time. Like I was really unsettled. It was like the last year of my forties I was drinking more and I was feeling that something big was gonna happen and I also had the sense. That time was running out. Now, as weird as that sounds, that's honestly true. What happened, and then I felt like I had definitely had hot flushes, more headaches. Although with my disability, I get headaches anyway. India: Yeah. Just to clarify that, just for people listening, you are a wheelchair user. You've been disabled from birth. Am I right? Suzanne: Yeah, that's right. So you were having hot flushes. Yeah, I was having hot flushes. I felt like I was going into puberty again. It was really weird, like my boob were really painful and they felt really heavy. I'm never hot ever because most of [00:03:00] the time I'm freezing cold because I've got Raynaud's as well and another circulatory disease. So it was really strange for me to be hot. But what really made me question whether I was in perimenopause or menopause was, I saw Meg Matthews on Lorraine one morning and I had no idea that the symptoms and the impact of menopause could be so devastating. And I listened to what she was saying and I was like, Hmm, that sounds really familiar. So I signed up to her website and I checked my symptoms and then I cross-referenced that with everything that was on the N H S website, and I had nearly every one of those symptoms. I was like, Wow, okay. But what really happened was that my mammogram came back with a callback saying possibly you might have to have a [00:04:00] biopsy. And actually I was experiencing the menopause, but what I was really experiencing was estrogen positive breast cancer. India: So do you think you were starting. Into the menopause? Or was it the cancer that was feeling like menopausal symptoms? Suzanne: I think it was the cancer that was making me feel menopausal symptoms. Looking back on it. India: You said you were 49? Suzanne: Yes, that's right. Yeah. India: And you were having regular mammograms? Suzanne: Yeah, I was having regular mammograms. 'cause I'm in the breast history clinic at Charing Cross because my mum had breast cancer and my sister did as well. But they got diagnosed between the ages of 36 and 38. India: Wow. So much earlier. Suzanne: Yeah, so I sort of got a bit lax about it all. I still went for my mammograms and I have had a couple of callbacks before and it's all been fine. And then a couple of mammograms ago, as it were, [00:05:00] they said to me, oh, you are coming out of the period of being diagnosed like your mom and your sister. So I was thinking, oh, that's good. It might have missed me, but it, it didn't, I'm not genetically connected. To my mum and my sister. The NHS did a test on me when I got breast cancer, and I'm not genetically connected to them. I've got a different type of cancer, but they do believe my mum and my sister were connected. India: Just to clarify, you are obviously genetically connected to your mum and your sister, but in terms of the breast cancer that you had, so there wasn't any more genetic risk for the fact that you had a family history of Suzanne: yeah, because it was a different type of breast cancer that you got. So I don't have BRCA. India: And that's the mutated gene, isn't it? Suzanne: Yeah, but they dunno whether my mom and my sister. Had that either because they both weren't tested. India: Right. Suzanne: So it's kind of, I went for the test 'cause I was convinced, I was like, it's the three of us. I'm convinced nothing. And [00:06:00] so you sort of felt, oh, well I'm clear of that. India: Family history risk. Suzanne: Yeah. India: And so you got the estrogen receptor positive breast cancer where the cancer feeds off the estrogen in your body? Suzanne: Yeah, that's right. Basically now I have to get the estrogen taken out of my body as quickly as possible, so I had to get my marina coil taken out and no HRT at all. India: Also you are, I presume, on aromatase inhibitors. Is that how you pronounce it? Suzanne: Yes, I think it is. I can only pronounce the one I'm on, which is Letrozole. When I was on the table as it were having the biopsy, they said to me, we see something in your lymph node. So I, I panicked and started to really, really cry. And they were like, oh, why are you so, are you okay? And I was like, oh, I think that's how the cancer went round. My mom's body and I'm, I'm really scared. I'm really scared. [00:07:00] And I did have a cancer in the end, in my lymph node, so I had two lumps in the end and a cancer in my lymph node. So, you know, it's, it's a huge thing. Yeah. And then if that wasn't enough, because it was the beginning of the pandemic, my operation got delayed for four months because they. Said to me that it was too dangerous to operate on me because my disability affects my lungs as well. India: And this was right at the start of the Covid Pandemic? Suzanne: Yeah, they didn't have enough ventilators, but they also were frightened about me catching Covid and they said, if you were to catch Covid, we think that you will die. And we also think that we wouldn't be giving you a ventilator. Basically, they were saying to me, we've put a DNR on you, do not resuscitate on you, and we think that you are not gonna make it. Now actually, I got Covid twice. It was really, really unpleasant and I was very, very lucky not to be hospitalized, but I, I [00:08:00] still actually got it twice. My immune system was so low, so. Fast forward to July, the hospital rang me up and said, what are you doing next week? I said, nothing. And they were like, good, we're bringing you in. India: And when they decided what to do, it was lumpectomy? Suzanne: Right? India: Which is what they're now saying is a much better treatment than the full mastectomy? Suzanne: The treatment's always personalized to you, so you have to weigh up. What is best for you and what the treatment of what the oncologist and the breast surgeon is saying to you. So I could have had either, but my sister said, well, the lumpectomy is probably better because it can still come back in the mastectomy scar anyway. India: Oh, really? See, I didn't know that. Suzanne: Yeah, it can. India: And the lumpectomy is, Keyhole, is it? Do they literally just take out the actual lump? Suzanne: Well, they have to give you clearance as well. So my breast cancer surgeon, he's retired now, but he's very old school, and [00:09:00] basically he said, look, I've taken a lot away around the area. You'll have a lot of scar tissue, but we don't wanna put somebody like you under a general anesthetic too many times because it's, it's difficult for you. It's it. It's a difficult procedure for all of us. As it was. They had me down for a ventilator, being in hospital for at least three weeks, a bed in ICU. I came out of recovery maybe about a couple of hours later. Went into ICU, was in ICU all night, didn't need a ventilator. Came home the next night. India: You are obviously steel I have to say. Suzanne: I always say what's written on paper. Especially about me. You can read it all and think, oh my God, oh my God. But I said to everyone, I bet I'll be fine. Don't worry, it'll be fine. I mean, I wasn't sure. I was terrified before I went down, to be honest. I was thinking, well, none of this is great. India: [00:10:00] No, and at the worst possible time, I mean, it's never good to get a breast cancer diagnosis whatever time, but in the middle of a global pandemic that's that's properly shit. Suzanne: Yeah. And, and with lungs that aren't great and with my disability it's hard. It's hard for them to kind of operate on me anyway. But essentially it was fine. But then of course, whilst I was four months, like waiting for the operation, I said, you can't just leave me. I'm not going to let you just leave me and phone me every week to see how I am. That's not how this is gonna work. I've read up and I want Tamoxifen. And they were like, Oh, okay. And I rang them every day for about 10 days, saying, when are you gonna get the tamoxifen? I think it's gonna have the least impact on my disability, but it'd be good for getting the cancer not to progress. And then we're like, okay. India: It stops your body producing estrogen, so therefore, hopefully slows down the cancer that is feeding off the estrogen? Suzanne: Exactly. Exactly. India: But does that not [00:11:00] also then shove you into like cliff edge menopause? Suzanne: Yeah, it did. India: For you to go Right, this is what I want. I absolutely get that. But that is also hardcore menopausal symptoms overnight, isn't it? Suzanne: It is. Yeah. So straight away I had pain, really, really bad pain in my joints anyway, in my chest, but I had really bad pain down below, let's be honest, because I still had the marina coil in at first. So it's trying to give me progesterone and then it's all been taken out and it was agony. It was, it felt like someone was stabbing me down below. It was really, really bad, and I was like, Oh my God, what is this? And then it started like I couldn't follow a plot on East Enders or I was like, what is happening? My hair actually did start thinning and falling out, my skin went bad, my nails went bad. I was like, I really, really don't understand what's happening here. India: And presumably for [00:12:00] you, it's really hard to work out what's menopausal symptoms and what's your body fighting the cancer. Suzanne: Yeah. So it was doing both at the same time because my sister rang and said, oh, your bone's grinding yet? And I said, yes. They are really, really badly. India: So that's the cancer thing? Suzanne: Yeah. The cancer's trying to advance through the bones and the tamoxifen is trying to push it out as fast as it can and it is awful grinding. Grinding pain. I mean, I'm used to having pain because my disability. India: So your pain threshold is high? Suzanne: Yeah, it is. It is high. India: They usually give tamoxifen to people who've gone through the menopause? Suzanne: That's right. You see. So they were a bit like, do you really want this? But what I was looking at was things around my circulation and things like joint pain, which could be worse under the other drugs. I think basically what they did was they knew they had to do something. They knew that I would not let up until I got something. So they just [00:13:00] said, alright, have that, and let's see. India: And it was a personal choice for you, wasn't it? You weighed up your pros and cons. Suzanne: Personally, I had to do all of that because, you know, I've got an existing disability. So what I also had to do was link all my various consultants together to talk about how they were gonna treat this and how they were gonna put me under the anesthetic and how they were gonna actually treat the cancer. 'cause they had to treat the cancer, they had to save my life. You know, one thing I'll I'll say is the cancer treatment is not good on somebody whose bones are already not great, but you, you have to weigh it all up. But the only way to weigh it up was get them all together to talk, which they did. They all provided a lot of advice to one another and to have that in the middle of the pandemic. Was absolutely amazing. India: So you felt as supported as you could possibly be? Suzanne: Yeah, and I'm lucky where I live, I live in Labroke Grove, so we've got four leading hospitals here. So [00:14:00] maybe it was easier for me in some ways, but no, here I was for four months shooting through the menopause, like absolute crazy. India: At break neck speed and still doing, did you do chemo or did you do radiotherapy? Suzanne: I couldn't have chemotherapy. Really? I, well, I had a choice. I mean, if you have to have it, you have to have it because they found another lump in the four months. Another lump grew next to the original lump. They took my cells to, they sent 'em to America on a system called Myriad. But we don't have it here at the moment, but it tests the cells and it gives you like a predictor. And so what they said was they predict what they think it's gonna do. They said that it would only be 6% benefit if I was to have chemo. And radiotherapy, they brought me in. They said, let's discuss the chemotherapy. We have to go through a list of things that might happen. So I was like, okay. And they went for the [00:15:00] list. I was like, yeah, I already have that. Yeah, I already have that. Yeah, my circulation's really bad. Yeah, I've really, uh, my nerve's really bad. Nerve pain's really bad. Uh, yeah, that goes on as well. And they were, I a lady that was was training, the oncologist happened to be away, and she did the interview with me and we were together for about 45 minutes and her eyebrows just kept shooting up further. And she said, look, she said, um, this has been really great and really informative. Uh, I need to talk it over with someone. Is, is that okay? I'm, I'm gonna phone your oncologist. I know she's on holiday, but I'm gonna phone her because, um, This could seriously affect your quality of life. And I said, yeah, I know. I mean, that's what we're always weighing up all the time. You know, I, I sort of rang my sister up and I said, well, I've got this list of pros and cons. The cons, you know, against having chemotherapy are much longer, unsurprisingly. And then she said, look, Suzanne, look at me. I am disabled 'cause of chemotherapy. I had to [00:16:00] have it. I had a very aggressive cancer. I had to have it. I'm disabled now. I've got COPD. Imagine you are already disabled. Think about this, what it's gonna do to you. It's only 6% benefit. You've got a good. Chance on the predictor scale if it's to be believed. So the assistant oncologist, she rang me up and she's like, we've got an answer. What do you feel about it? And I was like, bit afraid to say, no, I don't want it. 'cause I didn't wanna come across like a wimp. I know that's really a strange thing to say. And I said to her, um, I, I don't really know what to do. And she said, okay, let me help you. We know that you want to have the best chance ever because you've told us over and over again, but we are actually not gonna give you chemotherapy. And I went, oh my God, I'm so happy. And she said, oh, you agree? And she said, the other thing we're gonna do is we're gonna try you with partial radiotherapy so that we don't harm your lungs. So I had five sessions of very, very targeted [00:17:00] radiotherapy. After that, the oncologist said, right, I wanna change you over to Letrozole, right? Which is one of these AI aromatase inhibitors, which blocks estrogen again, because she said, you haven't quite gone through the menopause. 'cause I did another blood test for her and things like that. So I think now looking back, I was probably perimenopausal rather than menopausal. I said, okay, and she said, But there's something else. I need you to have. The Zoladex injection, the gosser injection in your stomach once a month. And I was like, oh, I don't want to. And she was like, we'll help you, support you as much as we can. 'cause I, I basically, I've got a needle phobia. India: Right, and I presume they're quite big needles. Suzanne: I have no idea. You don't look, I pretend I'm somewhere else. They fire a pellet into your stomach every month and it dissolves. And that's how it, it gets rid of it as well. India: Now Zoladex is an injection that stops the release of luteinizing hormone? Suzanne: Something like [00:18:00] that. Yeah. India: Which is also to do with estrogen production, isn't it? So you are getting a double whammy of shutting down all estrogen that your body is trying to produce. Suzanne: Yeah. So that's where I am two and a half years later, and really going through a menopause, which is medically induced, so it's hardcore menopause and there really isn't a lot that relieves the symptoms. India: So for you, you are literally just taking vitamins and an eye drop, were you saying? Suzanne: Yeah, so the dry eyes is really unpleasant. My sister had really bad dry eyes as well, so I've got some eye drops and I take calcium tablets with a vitamin D supplement. I asked for those and I'm back to the good old exercising as much as I can. India: I was gonna say, it's this thing of when people choose or can't take HRT, [00:19:00] then we are told nutrition exercise. But if you're a wheelchair user, do you not like go, you know, how can I, Suzanne: I do. I comment quite a lot on Twitter on that. I just said all, all of these things that you are suggesting, there were some very fit people running marathons and biking and all of that. And I was like, look, I don't mean to be rude, but how on earth is this inclusive and accessible? India: Yeah. Suzanne: For people who can't do any of this. So basically what I do, I am fitter than I ever was. I've always done a form of yoga called adaptive yoga. And it's created by a guy called Matthew Sanford in America. He's tetraplegic and it's a form of yoga for disabled people. And I've been doing that for about five years. Anyway, the most difference it's had on me is my breathing. Uh, my breathing is loads better. And, um, Brompton have definitely noted it down that it's much better than it was. India: Well, that's amazing. Suzanne: But yoga's quite tough. Now with [00:20:00] the increasing pain that I'm in, I swim. Every week as well. I got a gym referral from my GP and the lady from the council met me at the gym and taught me all these gym exercises, swim exercises that would just keep me going and keep me moving. I'm not brilliant at the gym. I. There's so many machines I'm not allowed to use, so really I'm just keeping moving. I'm just lifting the lowest weights and doing little things. But the gym, I don't go every week because that's hard going. I do eat much better than I used to. During lockdown, I started getting a box of fruit and veg delivered from, I'm gonna give him a shout. Devlin's 'cause they're amazing. The store on Portella Road, and they continue now to deliver fruit and veg every week, but exercising, I mean, I think that there needs to be, anyway, just generally a lot more awareness about how disabled people can exercise anyway. India: And what you were saying, you are very worried by the recent narrative of [00:21:00] HRT being ported to be safe for people with breast cancer. Suzanne: Yeah. I'm really, really worried about this because it isn't, if you've got any breast cancer whatsoever, you really shouldn't take it. At all. You shouldn't even be having a discussion. You know, it shouldn't even be brought up with your GP or anything. Do you know what I mean? I, I think awareness raising is brilliant and I, I think Davina McCall's done a really great thing, India: Hasn't she. Bring the menopause and Suzanne: this discussion into the public arena. But then what I'm worried about, and it's, it's not just her, but there's, there seems to be these other experts popping up everywhere going, oh yes, the figures are quite low now on HRT and breast cancer. And, uh, and it's like, no, why? You're trying to get estrogen out of your body. HRT putting it back in. So what are you doing? I just don't understand why people are not questioning it a bit more. [00:22:00] Where you get your information from is really, really important. And I read a lot of Dr. Liz O'Riordan, who is a breast cancer surgeon, but she also had breast cancer twice as well, and she dispels quite a lot of these myths. She has this thing around nutrition where people say, oh, if you eat this or you've eaten that and you must eat more of this or drink my special tea or something. She calls it nutri bollocks. And it really, really makes me laugh. 'cause it, it's true. You know, and I think there is a, a tendency now for everyone to be jumping on the menopause bandwagon. And therefore there's a lot of things being said that are, this is what we should all be taking and this. Supplement will help. And actually it's just feeding on people's fears. India: You introduced me to Liz O'Riordan and just to play a devil's advocate, even she did say that it has to come down to personal choice with HRT and ER Positive Breast Cancer because if you are so [00:23:00] debilitated in a similar way to you said, actually, I want Tamoxifen. That's my personal choice and I want you to give it to me. If you are so hideously debilitated by your menopausal symptoms, then it's, it's a weighing up the risks, isn't it? How risk averse are you in the fact that, you know, it might increase your risks of getting cancer again, or, I can't get outta the house because my menopausal symptoms are so appalling. She was saying that obviously there aren't enough long-term 10 to 15 year studies to be able to definitively say whether it is safe or not. But she was saying that it is whether you can live with the guilt, is how she put it. If it recurs, what do you feel? Suzanne: I hear her and I understand that, but I'm not gonna take the risk. 'cause I know how difficult it was to operate on me and give me treatment when I only had three small lumps. And I, I saw my sister go through the whole works of chemo and with a very aggressive cancer with a very, very young family. [00:24:00] Her youngest was like 18 months old. I've seen all that. I've seen my mum die of cancer. I, I don't wanna play down anyone's menopause symptoms 'cause I know they can be like really, really awful, the symptoms, but I think it might be slightly. Easier for me because I'm used to having a really hard time with my body and I'm used to like, where's the limit? And then pushing it over the limit because I kind of have to, and I think for me, you know, my menopause symptoms prob probably are like really, really bad. And, and if you've never had anything like that before, some people be like, this is not how I wanna live but me, I'm like, this is just something else I just have to learn to manage because I don't want that cancer to come back. And that is the thing I India: think, I can't speak for breast cancer survivors not being one, but I would've thought the majority of people feel the same way you do, as in, I have just got over this. I am not going to take any chances to bring it back again. Suzanne: No. No, I mean, I think what I don't [00:25:00] like is the positioning of HRT, like you said, like the wonder drug. I work in the music and live events industry and what's happening. They're doing lots of talks about menopause and HRT and all of that. At the moment, they don't really wanna hear. I can't take HRT. They don't want to hear it. And I'm like trying to say, you probably need to offer a range of solutions to this because you can't just say to your colleague, oh, maybe go to the doctors and get some HRT. Yeah. India: This is what I am determined to do on this podcast. I'm gonna look at all avenues because I'm on HRT and it transformed me overnight, but I know that I'm really lucky. And also I think I hit it at the right stage. I was perimenopausal, so my symptoms weren't hideously debilitating. But I've got friends who just go, well, I don't, I don't want to take it. And then you are left in a wilderness. 'cause personally, all of the alternatives that people are offered, everyone should be doing [00:26:00] anyway. You know, eating better, sleeping better mindfulness, cutting down on stress, exercising, whether you're on HRT or not. There need to be some concrete alternatives out there, and I think that comes from women's health being pushed up the agenda. Which I do think Davina has done. Suzanne: Yeah, definitely. And in the second program that she did, and she said there is apparently something coming in 2023, so I tweeted. Uh, and said, I'm holding you to that. I'm like, there'll be a lot of people out here doing the same. You know, to be fair, I think vaginal, estrogen is safe. India: Yes. So the vaginal, estrogen, the pessary is like a tiny risk and even. Dr. O'Riordan says that she takes it because she was a cyclist and she was getting labial tears and things like that, and so she's said that's transformed her life. So as I said, I think it's that thing, isn't it? It's what works for you. It's about personal. [00:27:00] Choice, isn't it? Which part of my life is being debilitated by this? Suzanne: Yeah. I mean, the other thing as well is that there are other things aside from the breast cancer, which HRT might not be a good idea, and I've joined a Facebook group for disabled women who are going through the menopause and some of the things that they're saying and they're worried about. HRT some of them are, some of them aren't, but lots of them are because it interacts with other medications that they're on. And it also makes their symptoms of their disability worse. India: This is a voice that we need to massively hear. And it needs to be part of the discussion, doesn't it? Suzanne: It does, yeah. India: And so how are your symptoms now then? What are you experiencing menopausaly? Suzanne: Um, I think the, the worst thing is the joint pain and the muscular pain because I've already got chronic pain [00:28:00] anyway. And neuropathic pain and it's made that whole load worse. And it's actually, sadly, and I dunno where this is gonna end, it's affected a lot of my mobility or the bit of mobility that I had. So of course my cancer would have to be on the right side of my body, which is my strongest side. My left leg basically doesn't really work. So, so, um, you know, my right arm's operated on. My right side's all operated on my right leg. Wasn't affected by my disability at all. So I always drove with one leg and now I'm finding that it's really hard to drive. I'm having really bad foot and ankle pain and really bad arm pain, and that's a nightmare because I stand and do all my transfers from wheelchair to bed to. Chair to getting in the pool, all that kind of thing. I need both my arms. Otherwise, if they don't both work, you know, which is all I can do, go around in circles all day. It's crazy. You know, you've gotta think about it. And that is [00:29:00] probably the most frightening thing. And I think if I'd have known those cancer drugs would do all of that, I would've. I dunno, but then I have to take 'em anyway. So what am I saying? India: It was a life and death situation, wasn't it? Suzanne: Yeah, yeah, yeah. I suppose I sort of, sometimes maybe I'll talk to my friends about the menopause. We just laugh about it and just go, oh yeah, it's this. But I've never really spoken to them about HRT because. Well, I think they kind of are quite kind to me 'cause they know that I can't take it. So they just wanna know that I'm okay and my scans are all right and things like that. India: Yeah. And for me, I don't think that the menopause needs to be HRT and that's it. Suzanne: No. India: You know, I think there needs to be a bigger, wider discussion on the menopause and it shouldn't be, oh, your menopausal. Here, take HRT, tick. There you go. We need to work out a more holistic way of dealing with it. Suzanne: [00:30:00] I mean, certainly we talk about the pain that we're in and the hot flushes, they're quite unpleasant as well. India: Are you still getting hot flushes? Suzanne: Yeah. Yeah. They're a bit less, actually when I think about it, my hair's stopped thinning. Thank God for that. My nails are really, really bad, but it's just, for me, it's, it's. It's really like, well, it's just something else, isn't it? India: And it's all tied in for you. You can't pull apart what's menopause, what's breast cancer? Suzanne: yeah. You can't pull apart the three things that menopause breast cancer and disability. And that's one of the main things that I came on to talk about was the fact that, you know, I swear to God, even some medics think that the menopause and breast cancer does not happen to disabled people. 'cause they put everything down to your disability. And I think that's the worrying thing. And when you see on the Facebook group, you see that a lot of women are being dismissed as, oh, it's just part of your disability. And I think that's quite dangerous. And I do wonder if things are being, like [00:31:00] the menopause is being diagnosed properly, if, if cancer's being diagnosed properly India: in disabled women? Suzanne: Yeah, because I just really, I, it's something I worry about. I ask my surgeon, am I literally the most complicated person that you've ever worked on? And he said, you're the second most complicated. I did work on someone that was more complicated than you, and I got you both through the operation. And he said, I know what you're saying. Where are the people coming forward, or I think people do come forward and you will see this, I. Because of the pandemic, you'll see, you will start to see the effect of this, but nothing could be done because it was covid or they couldn't get through to the doctor or there's all sorts of things. And I know, 'cause I've asked the questions, I say to them, are things worse? And they'll say, yeah, yeah. They're people who we definitely could have had a good chance and now they've left it to, I mean, you imagine the phone call, you know, I got, which was right. We're putting you in any menopause. There's covid around, we are not gonna save your life if you get covid. And, and the only thing that [00:32:00] ified me, I had a really great breast cancer nurse, she's brilliant. She said to me, look, she said, it is gonna be awful. She said, but we think we're gonna get a similar outcome, but there'll be people I'll be phoning today who won't have the same outcome as you. And that put it in perspective for me. I mean, literally, I was screaming. Down the phone going, you can't do this to me. I'd rather die of covid than cancer. You know, you end up having these really stupid, stupid, unreal conversations. I. I mean, who would sit there and say, I'd rather die of Covid than cancer? India: Well, I think what you meant was I'd rather risk getting covid. 'cause you got it twice the idea that you weren't being treated for cancer 'cause you might die of covid. Well, I'd rather take the risk of dying of covid than not treat my cancer. Suzanne: Yeah, exactly. It was that conversation that I just thought, no, Suzanne, you really have to fight for your life here. You really have to advocate for yourself. You might be ill, but you have to do it. Because no one else at this point. I mean, obviously my family would [00:33:00] and Stefan would, but he said, but if you did get Covid, Suzanne, they wouldn't let me in hospital with you. India: No, of course. Suzanne: And then who would speak up for you? So we had this pact that we'd only call an ambulance if my lips turned blue and then it would probably be too late. I mean, that's a nuts. Yeah. India: That is not a conversation you want to be having, is it? Suzanne: No. But I'm sure that there are many conversations like that that went on. India: Yeah. Suzanne: Anyway, we're supposed to be talking about the menopause. There. There are some things I wish I'd known before, like just how many different symptoms there were and how it might affect my strength and mobility because it does, and you can watch and listen to all the television and radio programs and your podcasts and read your magazines and online articles, but get your advice from medics. Please get it from medics. Don't compare yourself to others. Um, menopause is a very, very personal experience. It's different for everyone. You don't have to be Wonder Woman. You [00:34:00] really don't. And if you can take HRT and I bet you, but you can't believe, I'm gonna actually say this, if you can take it or other medication, take it. Don't suffer unnecessarily. There's no point suffering unnecessarily. You don't have to. No one has to. India: We've got to stop suffering in silence. We, as women put up with so much as supposedly our lot in life and that's just got to stop. And seeing as we are talking about being more Orca, this is the whole purpose of this pod. How do you feel now at this stage in your life? Are you more confident feeling that life is there for the taking again? Suzanne: Well, I think I am more confident and felt more confident. Anyway, coming into my fifties, certainly the menopause, you don't suffer falls gladly anymore, and you're on a bit of a short fuse anyway, so there's all of that. But I just felt with the cancer as well, [00:35:00] that it made me reprioritize things very, very quickly. I think that might be, Tough for some of the people around me, especially the people that work with me, because I'm like, listen, if it's not life or death, we are gonna be all right and we'll get through this. You know, it's solvable. We can find a way around this problem. No drama. Why is this drama. India: Which is brilliant. I think we all need big slice of that. Suzanne: But then in other ways, I'm not confident because I should, in theory, have felt that lump when they put my hand to my breast and said, can you feel the lump now? I was like, why the hell did I miss that? What was I doing? And I was just so busy and stressed out at work. My life. I just, I had let things go lax, so now I'm like, I used to know my body so well and had to know it so well to advocate for myself and say, no, don't. Touch me with those latex gloves please, because I'm allergic to latex. All of those kinds of [00:36:00] things. No, I can't stand up for two minutes. Just you can measure me. Can you get me a weighing scales that wheelchair uses use, but it's made me very confused about my body and I've had all sorts of tests. Like I convinced myself that the cancer was in my brain because I was getting more and more headaches. Then I had really bad pain in my ribs that I never had before. I had chest x-ray, rib x-ray. I ended up in tears in a and e because my foot wouldn't stop hurting and I didn't know what it was and there was nothing there, you know? But everyone's incredibly nice about it. They're like, look, nothing shows up, but you haven't wasted our time. India: Well, no. And do you think these were menopausal then? Suzanne: Yeah, I think some of them are, because my anxiety, I always was quite anxious person anyway, but my anxiety has got worse. Like there'll be days where I kind of wake up and think I, I'm just not together today and it's horrible when it's the first thought of the day and then you go. No, it's just the [00:37:00] menopause messing my head around and it's gonna be fine. And also the other thing is like, well today's just today, isn't it? I had to get used to like living in the moment. We all did in Covid anyway, but it's like tomorrow's another day and that's gonna be different. And no matter how long the night is, the day comes, daylight comes and it's gonna be fine. I also tend not to. Look anymore too far into the future because I find that that's not helpful and I find that I start worrying. So with my variability now, I'm like, oh my God, what if it gets worse? And what if this and what if that? And in five years, how's it gonna be? And it's just, it's not helpful. I can do it for work or these plans for the organization we've got a business plan till 2027. I can do all of those kinds of things. But for myself, I just learned, no, all you have to do. At the moment, and all that's required of you is to put one wheel in front of the other Suzanne. India: And so why do you feel women are so loathed to admit that this is [00:38:00] something they're going through and by something they're going through I mean, the menopause, not breast cancer at this particular point, but the signs they can all be stress related or just modern life. Do you think if we took away the stigma of aging, women would more readily seek help. Suzanne: So I find this hard to answer genuinely because I had no problem admitting the menopause and I'm not worrying about aging. Because to me it's a natural process. I'm disabled and my body's discussed, and bodies of my friends who are disabled are discussed and judged and portrayed as negative thing every day and what we've been disabled. And with my disability, you can die of it as well. So, or being disabled and now living with a cancer diagnosis I'd be so happy to age. I'm telling I'd be so happy to live a long life. So many people, they don't get that chance. My [00:39:00] mother never got that chance to do it. Why on earth you worried about aging? Why on earth you worried about hair and going gray and the white, you know, I just, I don't, I don't get it. I'm sorry. I just don't get it. India: I think that is just one of the most brilliant things. It's the idea of we should all be lucky to age. Suzanne: I've seen so many close friends of mine, so many disabled or not die in their prime time, and it's just, it's not right. It's, it's not right. You know, I just wanna party all the time. I don't really do much else. You might have got that impression from India: your brilliant blog. So Suzanne does a brilliant blog, which I will put a link to in the show notes 'cause it's fabulous and it is how we should all party and live out the rest of our lives. Postmenopausally. In one big gig, Suzanne: but even with the menopause, just go with it. Just go with the flow. It is hard though. I find it [00:40:00] really, really hard, the menopause, but it's something that is there and I can't change it, so I'm not gonna moan about it. I'm just gonna go through it India: and it happens to us all. Suzanne: It does. It does. Yeah. India: Whatever stage you are, whatever lifestyle you've led, it happens to us all. Suzanne: Yeah. And don't beat yourself up about all these things. Oh, if I'd have done more of that, I wouldn't have got that. Or maybe I've made it worse by doing this. We have enough guilt. You can't add guilt on that. No one should beat themselves up about this. India: It's an extraordinary thing you're doing. Thank you very much for talking to us about it. I really appreciate Suzanne: That's alright, I just wanted to give a bit of a different perspective, and I know it's probably a perspective that a lot of people don't hear very often, but I think it's one that's needed India: vital. I would say vital. And you've said it brilliantly, and thank you very, very much for taking the time. Suzanne: That's fine. I really enjoyed it. I know it's a difficult subject to talk about, but [00:41:00] I did really enjoy it. India: I recorded this episode with Suzanne at the end of last year, and as she mentioned, there has indeed been a new drug called NK 3 receptor antagonist, which has been approved in the US and hopefully will be here soon. The does offer a non-hormonal alternative for women to reduce hot flushes and sweats. Which could be a real game changer. I'll be talking about this with Dr. Katie in the next episode as we carry on looking at breast cancer. She also explains how to give ourselves a proper breast exam and we look again at the risks associated with being on HRT. If you want to Be More Orca head to For all the latest on what's coming up, I've cherry picked articles to keep you informed so you don't have to sift through the news and become a member. Tell me what [00:42:00] matters to you or what questions you want answering, help shape the pod and help other women just like you so we never have to feel like we're going it alone again. And if you've liked this episode, please subscribe as it helps with those pesky algorithms and lets others find us and become part of our pod. And follow me @be.more.orca for my no filter menopause diary.[00:43:00]

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