The Survivorship Project
The Survivorship Project is a podcast dedicated to sharing inspiring stories of cancer survivors and thrivers who have defied the odds, expert insights from leading health professionals and holistic healers, and practical tools for thriving beyond a diagnosis. This show is a beacon of hope, resilience, and empowerment for anyone navigating the survivorship journey—whether in recovery, treatment, or supporting a loved one.
The Survivorship Project
The Living List: Laura Middleton-Hughes on Stage IV Breast Cancer & Finding Her Tribe
Laura Middleton-Lewis's remarkable journey from a shocking breast cancer diagnosis at age 25 to becoming a beacon of hope for the secondary breast cancer community reminds us of the extraordinary resilience of the human spirit.
Diagnosed with aggressive stage III breast cancer in 2014 after discovering a small lump by chance in the shower, Laura's world transformed overnight. From running her own business and planning a future with her partner Brad to navigating a maze of hospital appointments, treatments, and uncertainty, the transition was jarring. Two years later, when the cancer metastasized to her bones, Laura faced the devastating reality of stage IV cancer.
Rather than succumbing to despair, Laura chose a path of purpose and connection. She launched her Instagram account "Bald Boobless and Beautiful" to document her journey authentically – sharing both the struggles and the joys of living with metastatic cancer. This evolved into co-founding Secondary Sisters with Nikki Newman in 2019, creating a vital community for those navigating secondary breast cancer.
Laura's powerful "roller coaster" analogy perfectly captures the metastatic cancer experience – a continuous ride with dark tunnels, unexpected highs, sudden drops, and uncertain track endings. Yet even within this uncertainty, she focuses on finding joy each day through her "living list" (her alternative to a bucket list) and believes that while there may be bad moments or hours, entire days can always be turned around with the right mindset.
Now approaching her 37th birthday and remarkably stable on the same targeted therapy for nearly nine years, Laura emphasizes the importance of "finding your tribe" – people who truly understand your experience when friends and family, however well-meaning, cannot fully comprehend the journey. Her advice to those newly diagnosed resonates with hard-earned wisdom: allow yourself time to process, don't rush healing, and eventually, you'll find joy again.
Join us for this profound conversation about living fully in the face of uncertainty and how community connection can transform even our darkest challenges into sources of meaning, purpose, and unexpected beauty.
Resources mentioned in this episode:
• Connect with Laura on Instagram
• Join Secondary Sisters
• Breast Cancer Now
• Follow Dr. Liz O'Riordan on Instagram or visit her website
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If you want to be a guest on the show, email Carsten directly at ckpleiser@gmail.com
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Hey friends, today I'm very excited to have Laura Middleton-Lewis here as a guest. Laura is a remarkable individual who has transformed her personal challenge with metastatic breast cancer into a source of inspiration and support for many Diagnosed with stage 3 breast cancer in 2014, at the age of 25, laura faced a challenging journey that led to a stage 4 diagnosis two years later, when the cancer spread to her bones. Despite these hardships, she has dedicated herself to advocacy and community building. In 2019, alongside Nikki Newman, laura co-founded Secondary Sisters, an online community aimed at supporting individuals living with secondary breast cancer. Through this platform, they have fostered connections, provided resources and worked to change perceptions surrounding incurable breast cancer. Laura also shares her personal experiences on her Instagram account, bald Bublis and Beautiful, where she offers candid insights into her life, treatment and the realities of living with metastatic cancer. Laura, I'm so happy to have you here. Thanks so much for joining.
Carsten:Thank you for having me Reflecting on your initial diagnosis at the young age of 25,. Can you share the emotional and psychological challenges you faced during that time and how did you navigate the transition from being a young professional to confronting a life-changing illness?
Laura:Yes, so going right back to 2014, I had absolutely no idea you could even get breast cancer at 25. So it wasn't even in my, in my sort of vocabulary, and you know, I'm with it and I think I was completely naive. I mean, I came across a little lump by chance. I was very, very fortunate that I found it in the shower one morning. I was on a really amazing holiday and I was, just, instead of using a shower scrub in the shower, I was using my hand and, as I say, just came across this tiny little lump. And I was just, instead of using a shower scrub in the shower, I was using my hand and, as I say, just came across this tiny little lump and I thought, okay, that's different, but you know, 25, I thought it might just be a cyst or something. So when I eventually went to the GP, which was a few weeks later, when I was back in the UK I wasn't kind of going because I thought it might be cancer. I was just going because it was something that I thought might be removing, or I wanted reassurance, really, that it was okay. And so when I was then sent to the hospital for you know all the different scans. You know I had a, an ultrasound, I had a biopsy and a mammogram. It was only then, I think I've started thinking, okay, they're looking for something that might not just be a cyst. I was literally thinking I'd go and come out again and I think even then I sort of didn't really go to cancer because I think again, as I say, I hadn't really heard much of it when I went back in to get the diagnosis. So I was initially diagnosed grade three, stage three, aggressive, estrogen positive and HER2 positive, already in the lymph nodes, breast cancer.
Laura:The only way I can describe it is your whole world just sort of falls apart around you. As a 25 year old, I was busy working, I had my own business, I was looking forward to the future of having a family. I had been with my now husband, then partner, for four years. You know life was good, I was out a lot, you know, enjoying being a sort of young mid 20 year old. Suddenly I get thrown into this completely unknown world of appointments, hospital admissions, medication, feeling ill, because I actually will say when I had the diagnosis I didn't feel ill, there was nothing wrong with me physically. I might have been a little bit tired on the offset, but then I thought that was just because I was working really hard and busy.
Laura:And so then I was thrown into a completely different world and it's a really I mean it's obviously challenging at any point in your life to get a diagnosis. I can't imagine, you know, getting it at any age, but at that age in such a crucial, I'd say, part of your life you know you're in a very, I'd say, productive area of your life in your 20s it's a complete whirlwind of a change. And yeah, I just felt like everything just came crashing down around me and I just knew that I was now just in the hands of the hospital and the medical team and you kind of lose that independence. Just everything you ever kind of thought you would have in life just disappears. And that just the primary diagnosis.
Laura:So obviously then when a few years later I got a re-diagnosis of secondary again, you go through all that again. But it's just it's a really hard one to navigate. I think what I would say is anyone who goes for a diagnosis that sees anyone online that might be sort of part way through or quite a long way through their diagnosis remember they went through that point. They remember what they went through, that really dark time, you know, when life was really crap and we just you just want to say why me? Because I think that is what I went through then.
Carsten:Yeah, and I know at this stage your mother wasn't very well with a neurological disease. I think, yeah, and brad was there. Obviously you've been together with him for a few years, who was your initial support group during that time when you went through this dark phase.
Laura:Yeah, that's a good question, because I actually found it really tricky. As you say, my mum was very unwell. She had had a neurological disease for a few years. She was in a point where she was fully reliant on people, so we had 24-7 carers. She had to, you know, be hoisted out of bed and his chair she couldn't speak. So at this point I have three sisters, two of which were sort of at uni or living back at home, one also that had moved out but was also home a lot, and I think, because she was so unwell and she was so poorly, everybody and this is rightly so obviously she became sort of first priority with everybody.
Laura:So I found that quite tricky because I felt like I was completely on my own with Brad, with their situation. You know, my grandparents looked after my mom, my sisters looked after my mom, you know all the people around. It was more about her and I felt it sounds awful to say, but I felt quite guilty to get a diagnosis at that point, because I then couldn't be there for my mom as I wanted to be, and I had to then focus on me. So I really really relied on my, obviously, my partner, brad, and my friends. My friends became the people I really called upon in those times that came with me to my hospital appointment. They were the ones I'd ring up in the middle of the night if I needed any support or help. And I think you have to surround yourself with people that you know can be there, and I knew my family had such a lot else going on that I didn't want to be that burden to them as well.
Laura:So, yeah, it was definitely tricky to navigate the two illnesses um going through, but also, like I say, I felt guilty, like I also felt really sad that I couldn't, I couldn't be there for my mum to help her as much either. And it's a yeah, it's a very lonely, lonely space when you're in that world. Everyone around you is getting on with life. So you know people were there as much as they could be. But I think also people just assume that I'd be okay, like I'd get through the treatment and then I'd be okay. So therefore, as much as it was a concerning period of time for that I'd say a year, that good sort of first year of the treatment I also was in a very suppose I wouldn't say good headset, but I was very like I just want to get through this year, I just want to get through this, and then I'll get back out the other side and I'll get back to me and obviously people saying like you're going to be okay, you're going to be okay, they don't go through this.
Carsten:They don't know how dark this is and how much you see on the chemotherapy board, how many friends you lose, all of these things that you experience, probably, that they don't see. It's very easy for them to say like you're going to be okay, but you, internally, you know well it's going to be a tough journey ahead and I don't know if it was the same with you, but I got like messages from all these people and then eventually it was like okay, I'm going to have a copy and paste message to everyone yeah, I think you did it differently, because you started a Facebook group, right?
Carsten:talk to us about that and how it all started to actually then potentially became your Instagram account and then eventually it became Secondary Sisters. So tell us about that journey.
Laura:I was very like you. I could not speak to everybody at the same time and it was always after treatments everyone's like how are you doing, do you need this, do you need that? And I think you know it got to a point where I was replying to sort of 30 messages and I couldn't do it physically. Physically I was just too knackered. And so, yeah, I set up a Facebook page.
Laura:I thought I want somewhere that I can update everyone at the same time, and I just at the time was bald, I think I just had my mastectomy, so I was boobless, and so I called myself all boobless and beautiful and it kind of stuck. And it was a really great space because, as I was able to update everyone, everyone was able to keep kind of into my story, but without always hassling. But even if I needed something I could put it on there as well. And, yeah, it just grew. It started off just literally an idiot friends and family but I had it as an open page and then I found more people joining and wanting to find out about it and then, when Instagram became more of a thing, I sort of transferred over to that and started using that more and it was yeah, as I say, it was a really good space for me. It's like an outlet, right, and I felt like if you write something down, it's easier to get out of your head, and I think that was sometimes where I would put things.
Laura:I was having a, a day where I was overthinking I'd maybe share it and then it would sort of make my head a bit calmer and so, yeah, then then it kind of started growing on Instagram and I started trying to use the platform, you know, to document my life, really just document my every day, whether that be a good day, a bad day, a hospital day, a fashion show day and you know anything day, and it it was really. It's just really really fun, it's been really nice and a way of creating a sort of memory board, I suppose, of what I've been through over the years, but equally sharing, you know, living and enjoying life. And then it was through I think it was through my Instagram account that I came across a sort of photo shoot that was going to happen with people in the cancer community, and that's where I came across Nikki Newman, who then we were the same age, we had a very similar diagnosis and we both wanted to do something to help the secondary community, because at this point, obviously I'd had a secondary diagnosis, and that's where secondary assisted came about, because we were like we want to just create some space that that people can talk about secondaries quite openly, because, again, at the time I was at this point I was at 2019, so I'd had my secondary diagnosis a couple of years. I think I was 30 or 31, um.
Laura:But again being young in that sort of circle was quite difficult because very few people I met along the way I could relate to so I really needed to find that community. So it was selfishly really for us to find that community, but we found that it was really needed this sort of information area that people could discuss secondaries, to get a bit of hope, to educate themselves on actually what different scans are, different medications are different types are different even to. You know, I have breast cancer, but I still find it fascinating to learn about other types of secondary cancer or primary cancer in that. So it's amazing how one little thing can kind of spark your what you do and where you go in life. And it just became, it still is and has always been a really good outlet for me and I've met an amazing community doing it Absolutely community doing it absolutely.
Carsten:You probably might get lots of messages from people saying, oh, you helped me so much like my daughter is now checking out, you know, for knots or anything daily or whatever, and you're probably helping a lot of people and it must definitely contribute to your mental well-being, being a resource for someone and helping people right oh, completely, when I get messages from either my personal account or secondary sisters to say you know, you've helped me do this.
Laura:Even like recently I had I shared quite a lot about traveling and like where I get my insurance from, and I had a lady contact me saying because of the insurance company I recommended I think it was her mother or mother-in-law had a heart condition and she couldn't, for love nor money, get either insurance or it was really expensive and so she ended up trying the insurance company I recommended and she was able to get it for about 40 pounds and she was like how, like my mom can now travel. She literally cried. She was like, oh my god, this is amazing. So I think that just being able to help people in different ways is is just yeah, it means a lot. It means a lot and it's. I find it really fascinating how many people who don't have cancer follow me but equally get help or support from things I say which is, yeah, it's mental.
Carsten:That's so wonderful. I got a quote for insurance for £3,000. I'd rather risk it and not have it.
Laura:Yeah, I've just been aware and I think we got for a whole year, including America, because we were going to America. It was about £350 for a whole worldwide year. Now my husband gets it for about 60 pounds including cruise cover and I'm like what? But even so, that is so good in comparison to, like, say, 3000 or there are so many companies that just try to rip you off or they don't cover the cancer and that you know. Yeah, that sounds scary because you're like I don't want to go away and not have everything covered because it, if something doesn't go wrong, you're in a bit of a pickle.
Carsten:In some of your publications you kind of like give the picture of a roller coaster ride going through these dark times, especially with a secondary cancer diagnosis. After the first one people probably said to you, oh, you're going to be all right, everything's going to be fine. And then the shock again and you describe it as a roller coaster ride. Can you describe that again a little bit, how it is living with this disease and being told that you know, know, you're going to be on lifelong medications and all that stuff like how does it feel?
Laura:so, yeah, the roller coaster analogy was something. So when I was diagnosed with my secondary diagnosis, which was 2016, I was 28 years old. It spreads the bones, you know.
Laura:You do end up in this really, really dark time and I think I at that point I literally thought I wasn't even going to make my 30th birthday. I mean, I turned 37 in a couple of weeks, so I'm, you know, incredibly fortunate that I'm still here and treatment's still working. But what how I described it is you know, when you, when you're on a roller coaster, often you will have tunnels right, you will go through really dark tunnels that are quite scary, and you will come out and then there'll be some light or there might be some like tunnels that have cracks in them, so they're sort of light scattering through. But then sometimes you go through highs and then sometimes you come down to the lows and you kind of you can't get off this roller coaster. I feel that that is where I'm at and I've gotten on this. I know I can't get off, but I don't know when the tunnels are coming. I don't know when it's going to become dark. I don't know when the light's going to come. I don't know when the highs or the lows are coming.
Laura:I know at some point and I've said this a few times in the analogy that I use is that I know one day that that track will run out. I don't know how high it will run out. I don't know how low it will run out. And now I know I've got a lot of different hurdles to climb and I know that there's going to be ups and downs and there's going to be light and dark, and so I just think for me that's a really good analogy on how I feel and how this, this life, has gone.
Laura:You know, there are some really amazing times and I've had some incredible opportunities that I never would have had, you know, had not had cancer. I've had very scary times and I've had times where I've been really humbled and kind of like brought straight back to earth with a bang based on losing friends really quickly. And that's the other thing I think I find is often in breast cancer and I can't talk for every cancer, but often in breast cancer I find that when it comes to the end, people do fall very, very, very fast. They, you know, literally, are fine, and then they're gone within a month or something. So that is where that kind of the track running out. You're not sure where it's going to run out, how long you're going to have at that point, but knowing that it's going to be quite a fast fall at that end, and so, yeah, so that's my roller coaster, and while I'm on the roller coaster, I'm just going to kind of hold on tight and just hope that I can kind of get through those hurdles along the way.
Carsten:You're an inspiration with that, because so many people don't know how it is and you're describing it perfectly with that analogy. And then you just started doing instead of what most people would think you would do. You started doing instead of what most people would think you would do, like, instead of a bucket list, you actually created the living list. Right? Tell us about that. Yes.
Laura:So I was again in a quite dark space at the beginning of my secondary diagnosis. I'd gone into hospital to have a full shoulder replacement. I knew that that was going to be like the end to my career as a hairdresser and again I didn't know how long I was going to have. I think at that point the statistics were not good. It was like two to five years maximum. So I was like okay, well, what do I want to do in life? And it was really sitting in that hospital bed after my operation where I couldn't do a lot and I managed to start sort of typing a little list of things I really wanted to do.
Laura:But I hated the name bucket list, because I think bucket list just to me sounds like I'm literally dying and, you know, gone. So I was like I'm gonna have a living list while I'm alive. I'm gonna have a living list and I just put random things on there, things that I, you know, probably will never achieve, but equally lots of things that were manageable, from nice afternoon teas, the theater days to I knew I couldn't have children, so get a puppy, which was definitely one of the first things on the list. And it really helped because when I was going through treatment, I would have a look at my list and I'd say, what can I book, what can I sort of, what can my friends and family maybe treat me to, or what can I have to look forward to?
Laura:And the list kind of grew and some of my friends added things and some things like read the weather on TV, which I managed to actually do at a local TV station Things that, yeah, it's just something that kept me going. But I didn't want to look at my list and be like that's my list of dying things. I was like no, that's my living list. And it put a smile on my face and I thought I think it was that point as well. I was a real turning point being in hospital, for it was like a week and a half and it was like I can go home from this ordeal and sit in a corner and wallow and waste away the year or two that I might have left in my life, or I can come home and I can make the best of the year or two that I have left in life and so that's what I did.
Laura:I was like, yeah, I will deal with the. You know the sort of when I've got to deal with it, I'll deal with the bad times, but right now, let's just get through each treatment. Let's have something to look forward to and enjoy life.
Carsten:That's such a beautiful mindset and I wish that people would have that even though they weren't ill. So many people would have less depression and would really enjoy and make the most of life. I think sometimes people just waste their lives away and I think with our diagnosis, you know where. You don't know how long you really have. It's kind of like important to really make the most of the day and I think you do it beautifully and it probably contributed to your well-being.
Laura:Tell us a little bit about your current medication.
Carsten:You're on every three weeks, right? Is it immunotherapy, is it like some kind of chemotherapy, or what type is it?
Laura:Yeah, it's a targeted. It's sort of classed as a chemo, but it's a very different sort of chemo to the ones that you get initially when it you know they blitz every single cell in your body and you lose your hair and everything like that. So the type I'm on is a targeted therapy. So it literally targets the type of breast cancer that I have. I have a tablet every day, I have an injection every month and I have a hospital. I have to go into hospital for IV and injection every three weeks and that has been. For what was it now coming up? Nine years, I think will be that I started that regime and at the time I thought they told me it might only work for 18 months because it was quite a new drug that'd come out and yeah, to be still on it over eight years is incredible.
Laura:I'm so fortunate that it's kept my cancer stable. Now my cancer came back to my bone, so it's spine, my pelvis and my humerus bone. My humerus bone was chopped out, so all of my right arm humerus bone is a metal bone instead they've replaced it fully. So that's given me a lot of pain but equally a lot less movement, so a lot of restrictions in my arm and my spine and my pelvis. It shrunk a little bit at the beginning when I had the really harsh chemo, but it remained there. So I sort of the way I describe my cancer currently is it's having a sleepover but it hasn't found the vodka cupboard and it's not having a party yet. So it's there and while it's sleeping I'm happy for it to just stay over. I don't mind that, but yes, it's not a start of the party and I just hope for as long as it can.
Laura:I feel very fortunate. This drug is still working. No friends that have started this medication and within a year or two it stopped working. So, as I say, I'm very, very lucky in an unlucky situation, but very lucky in it. But I know that there are a couple of lines of treatment still ahead of me if this one does stop working. So I'm scanned every three months. I've actually just had a stable scan.
Laura:So at the moment I'm feeling in a sort of a good place, which is nice, because you always get that roller coaster of anxiety as soon as you have a scan. You're like, oh god, is it? Because it could change, and that's what you see. So much is, people get the results and that changes the course of their life because you know the drugs stop working, they move on to something else, but that next drug may not work or may not, you know, might make you feel so, so ill. So at the moment I've got a really what I would say is a good balance of quality of life. Over the treatment there are side effects. I have medications to deal with those side effects. You know I'm constantly popping pills. My friends laugh at me because I'm always carrying my little pill pot around but the way I I live right now is a good quality of life, considering what I'm doing and going through.
Carsten:Yeah, wonderful, amazing, scariest moment when you talk to the oncologist and then you start the first day of the new drug and you don't know if you're gonna have any allergic reactions. I'm not sure if it's the same with you, but they put you in the middle center of the chemotherapy and they do all those measurements every 15 minutes and so and it's like really scary, isn't it?
Laura:I had that. Actually I was on Herceptin in my primary but in the subcut form, and then with my secondary I got moved to IV, that and then to Pertumizab and I reacted to the subcut not subcut, sorry the IV and I ended up having to be kept in overnight, admitted, like my face went bright red, my eyes were like swelling, um, and so then I had to have I have to have steroids. So, but then when they moved to the fesco, which is a subcut again, I then said, could I try without steroids and it? I didn't react, thankfully, which is so much nicer because I don't know about you. But steroids are the bane of my life.
Carsten:like I hate them oh, I hate steroids too. They make you laugh and talk a lot, in my case at least yeah, and not sleep yeah, well, I didn't have that much of a problem with sleep, but then after you basically take them away, then you fall a little bit into like a little bit of a of a hole, like a roller coaster tunnel a little bit and I just don't like them at all.
Carsten:And I had the same thing. I had a reaction as well after on the sixth session of cisplatin or something okay, and my and my wife was like, oh, you're turning red in your face. And the nurse came on push the button I love it.
Carsten:Six or seven doctors running to you and giving you all these injections. I was like, oh god, I'm gonna die now. This is this, is it. You know I wasn't kept in overnight, but it's a scary thing. And then they put you another drug and you're wondering how many more lines of treatment do I have actually, you know, is it going to run out eventually? What is your perspective on? Obviously, breast cancer is one of the most common cancer in women and it's going to be. It's researched a lot Like. Do you feel like there's like treatments? I mean, my mindset is like they're going to develop some treatments and it's going to get better and better and better. What's your opinion on that development of drugs and therapies and all that?
Laura:Obviously. I mean, research is incredible. I think this analogy that people kind of keep saying is we want to cure cancer, is such a massive statement, because cancer is not just one thing. Even in breast cancer there are so many different types. I don't think I've ever met anyone who's on exactly the same regime as me, with the same type and the same kind of age and all of that. And so you know it is amazing that drugs are coming through and new drugs are being found and the current, as I say, the current medication I am taking what wouldn't have been available probably five years before I got my diagnosis. So so I'm so fortunate that when I got my diagnosis when I did and not earlier and obviously what we want, I think, as a stage four, is more time, and if you can get a drug that gives you just that little bit more time, that might mean another drug comes along. That is what we want, and it's sort of it's a really hard one to describe to people who don't have cancer, because you're living on this like knife edge, aren't you? The whole time. You don't know how you're going to react to those in the heads, you don't know if they're going to work. You don't know if you're going to be able to find people that can't tolerate certain drugs. So therefore, that's a lifeline gone straight away if you can't tolerate it.
Laura:I feel, I suppose, content a little bit more at the moment, knowing I've got a few lines ahead of me that I know people have been doing quite well on and maybe the side effects aren't horrendous.
Laura:But it's that weighing up of quality of life over quantity, isn't it sort of? If I got to a point where my quality of life was being massively diminished and I was at home all the time, unable to leave the house, being really sick in hospital all the time, you know you do sort of start to question why, why would you carry on with these things if they're just keeping you in a kind of, you know, very unlivable state? But I'm just, you know, I'm hopeful that that there is still research going on, thankfully, and, like you say, breast cancer is really common and there is a lot of money that goes into breast cancer. I'd say we just want more time, we just want more time on that roller coaster and we just want to know there are going to be some, some levels of things to look forward to. I just I dread that day where they say they can't do anymore. You know that is. It's scary.
Carsten:It's scary to think that will happen one day and yeah we talked about, like how your life is now in terms of experiences, emotional wellness, well-being was it was before. Has anything changed? Has it improved? Is it the same or is it worse?
Laura:I think it it's a very difficult one, like physically I'd say I'm doing well, mentally I'd say it gets harder over time. I think that's something that I do talk about quite often is the mental strain of it all, the constant being in hospital, the constant like you just never get off that roller coaster. You never get that chance to just be Laura. It's always Laura who's got to take her medication or Laura who's got pain or the scars, and so it does grind on you after a while, and especially pain. Pain is one of those things that I think you know when you have daily it just becomes so persistent all the time. So mentally I do struggle more with that. I do get really good help through my palliative team. They've referred me to get like cancelling, and I do that with Brad as well, which is brilliant. Obviously surrounding me are my friends and family. Or having children. That's something I'll never get to have. So again, the mental strain of that is difficult, but I do. Also, over the years I've found a massive help within the community because obviously, being the founder of Secondary Sisters, I've met others who are similarly going through stuff that I'm going through, people that I can really talk to about the nitty-gritties. I shouldn't be writing my will or, you know, talking about my funeral plans at the age I am, but that is just the reality of it. And I do do that quite often with the people who also understand, because it's very, very hard to sit down with your best mate and have a coffee and be like, let's talk about my funeral, because to them it's like I don't want to talk about that, not because I don't want to, it's because it's just a bit of a shock for people to discuss, whereas my little secondary group, especially my norfolk girls I've become really, really close to you know. We just naturally will just chat about these things and it will just be like everyday conversation. And so I think for me, finding my tribe, finding that community, has massively helped shift my perspective on just everything and helped with that mental load.
Laura:And I think I've always tried to say that to people and this is why secondary sisters is so important is finding your tribe is the best thing you can do, because your friends and family, even brad like he lives with me and, yes, he gets it on a level that other people won't ever understand. He still doesn't understand what's really going on in my head what the pain is like and all of that sort of stuff. So there's certain things that you know they will try to want to help and understand, but they just will never be there. It's like me I can't describe what it's like to have a baby or give birth, and I wouldn't even dare try that because I haven't done it. So the mothers you know, my sister who's just had a baby will talk to my other sister who has had a baby, or she'll talk to her friends who have had babies, and I think I explain that the same as cancer, I need those people that really understand it from that level.
Laura:And even you know my friends that have primary cancer. They also understand certain things, but they've never had a surgery diagnosed. That fear of death like that is a challenge. So, yeah, I think I've learned to allow those moments, though, and I think this is where, again right back at the beginning of the podcast, I said you know, allow yourself those dark times, and everyone goes through that. Over the years, I've given myself space to have a good cry, to shout and scream. Why me? Because even now, like, I do feel like that sometimes, amongst the positivity, it's never all going to be, you know, suns and roses and flowers and stuff.
Carsten:It's not Because you're stepping on those eggshells constantly of you know, things that can crack, yeah, and the people that don't experience the cancer, they want you to be back normal. It's like, oh, life is normal, now again, but it's never going to be normal again and often they want you to be like the normal.
Laura:Laura right, and you know laura has changed and sometimes people don't see that and it's very hard to for external people to laura 2.0 laura 2.0, yeah, exactly I really struggled at the beginning to lose that identity because you do you almost like fight to try and get the person back that you were pre-cancer. But it's never gonna happen and I think as soon as you accept that, you kind of go okay, I'm not gonna be that person. But who can I be now? Who do I want to be? What sort of change in my life? And I will.
Laura:You know, I am much more of an empathetic person than probably what I used to be. I am more patient. I'd say you have to be in this situation. I, as you say, I'm sort of more of a go-getter in life. I don't say no to things very often. I'm just'm just like. You know what opportunities are going to come like, take them. And I think you know I feel lucky that I have been able to do the things that I've done, knowing that I haven't got long, because if I hadn't had cancer, I'd probably have a couple of kids, never be able to go on holiday, working my ass off in hairdressing still, you know, putting my clients first, because that's what I always used to do.
Laura:And you also learn to be selfish, and I think that's a really important word because we all have a real negative connotation around being selfish, but selfish is the best thing.
Laura:You can be sometimes in the situation because you know you've got to look after you because no one else is going to do it for you. You have to look after you and if we can be a bit selfish and actually learn what we need in life, everything else we're going to be better at doing, because we're going to get what we need. And I think sometimes we really struggle putting ourselves on the spotlight and saying what do you need, what does your body need or what does your mind need, because your body is like you're never going to get another one, so you have to look after what you have. And I think, as I say, that I've learned massively over the last few years to be able to be like what do I want? Not to please everyone else all the time, what do I need? And so I think we do need to yeah, we need to start doing that a lot more especially people are going through something I love that and I think I hope it will help so many people.
Carsten:This conversation, so many insights you can share. And if everyone out there is listening to this and facing secondary breast cancer, please, please do get in touch with Laura and please get in touch with Secondary Sisters. I think it's a great, great community. What I heard now and the feeling I get from Laura is just like it's going to be a wonderful group to exchange and to be honest about things and true, which is great. What are the tools do you use in your day-to-day living that help and support healing, if any?
Laura:my dogs help me a huge amount. I got a puppy when I was diagnosed with my secondaries. When I think of chemo and do you know what? Just even if I'm having a really bad day, whether it be pain wise or mental wise, even if I just get out for 10 minutes with my dogs, it really helps reset that sort of day and makes me feel like I've done something, even if I come back and then you know, watch telly all day. That I've done. I've taken my dogs out, I've had some cuddles with them to get a pet. I mean, they are brilliant, they're such good company. But I mean recently I think I've definitely tried to do more in terms of exercise, going to the gym, focus on again things that are pushing myself a little bit, because I think sometimes my energy levels really do struggle and I find that if I've gone and done a little bit of a workout, often that really helps with my energy level.
Laura:I don't like I'm not someone that's gone and changed my diet or given up things, but obviously I'm quite mindful about making sure I really fuel my body with food. It needs vegetables and protein and all the other stuff. I don't drink as much as I used to, but I do have the old glass of wine here and there. I love my chocolate. That is never going to go. I do take CBD oil at night times to help me sleep, but other than that I don't really do a lot of our sort of alternative stuff. I think I very much take each day as it comes. I book nice things in, whether that's to see friends or do something, and I try to. I've got kind of saying that that no day is a bad day. You might have a bad moment, you might have a bad hour, you might have a bad minute, you might even have, you know, a bad half day, but you can always turn a day around and you can always find a little bit of joy. And that's, I think, where I really try to go with it, something to make me smile every day, even if that's just a chocolate brownie and a cup of tea watching my favorite film.
Laura:It's sometimes that saying, isn't it? You've got to fake it till you make it. And it is a case of sometimes. You know, when you have a day where you're maybe not feeling great, the worst thing for me to do is sit in my pajamas, you know, not shower, not have something nice to eat, not sort of like to take out all the dogs, and you kind of end up in your own head and that is the worst thing. The best thing is to get up, get yourself dressed, put some makeup on, wear your prettiest dress, go out and you know, just to have a 10 minute little walk and I promise you you'll come back and feel so much better, because I think it is all about that. It's that mindset of you. Know, if you look and I think this stems from when I, like, became bald and things like that like if you look unwell, you feel unwell yeah and, yeah, I think that that just really emphasizes everything, doesn't it?
Laura:it sort of makes everything feel worse. So, yeah, I feel like getting a little bit of put a bit of face on, fake it till you make it, and often it will make you feel a bit better and even if it doesn't, you've had a fun time doing it.
Carsten:I love that. That's a really good tip, really good tip. Now you can totally say no to this. Has there been any changes in terms of your spiritual life? Or let's say, yeah, I don't want to into religion, but spirituality is a bit different from that.
Laura:I've never been yeah, I've never been sort of the really religious side of things and I think just, I think I just take it more from, you know, nature and things like that, like I just like being out in nature and those sort of things. You know, I'm very much. If I see a robin, I'm like, oh, maybe that's mum popping in to see me and say hi, I'm very much. Or if I see a robin, I'm like, oh, maybe that was mum popping in to see me and say hi. Or you know, you see a feather and it's like, oh, is that someone giving me a sign?
Laura:I think finds are a bit more. I definitely feel it sometimes, you know, when you feel sort of presence of people or people that you know. I mean, when I lost a really close friend who had primary cancer, who we became really friendly in that time, but then she died really suddenly, and I think that first week it was so strange. I remember she absolutely loved Chelsea Football Club and I've never been anywhere near Chelsea Football Club in my life and I was driving somewhere in London and the sat-nav took me past Chelsea Football Club and then I was in a little marina and I saw a boat named Becky and I'm like, okay, that's two things.
Laura:And then I walked. I was in again. This was in london. I was walking at the tube and she had sent me a picture. Like the week before she died. She'd made a ridiculous purchase of like these really extensive shoes and she never actually got to wear them because she passed away before they even arrived. But I remember her showing me a photo of them and I saw this girl in the tube station wearing those shoes and I'm like that's three things in a like space of 24 hours. This is mental. So I was like that is her sign, like she's giving me something. Well, I definitely that. You know, I definitely think there are. You. Either you consciously want to look for those signs or they are actually appearing because of the situation. But I think if you just let that level of spiritualness kind of come then then it can sometimes feel very comforting.
Carsten:Wonderful, what a great story that is. I love that really cool before we go into like the wrap up and maybe in the end we can talk more about how joining secondary sister works. But if someone listening to this just received a secondary diagnosis today, what's one thing you want them to hear from you right now?
Laura:I would say sit in that diagnosis, allow yourself space to process that diagnosis and when you're ready, just try to find the little joy in every day. It will take time, don't rush it, don't think that you're going to be bouncing around, as you know, straight away. But I promise you, over time the light will come through those cracks and you'll eventually see the joy again and you will smile.
Carsten:Love that Beautiful Laura. That's really nice. Okay, cool. So before we go into quickfire questions and wrap this thing up, secondary sisters, how can people find you? Where can people find you? How can they join? Is it free? Is it charged? How does it work?
Laura:So we are online on instagram as secondary dot sisters. We are a page which has a lot of information over the course of the years that we've put out there. We've shared stories of driver stories we call them, and they are people who've submitted their stories to us with pictures and we put them out there to sort of give people support and give them hope and just share what people have and what we find. You know. Know people might say, oh, I've seen that person from the place I live in or I go to that hospital, and then they end up sort of meeting up because of it. So that's amazing. We also meet up in person to do events and that often has been held in London alongside the charity Future Dreams. But quite recently we did set up a little community fund to enable me to financially go around the country and do some events. So this year I'm in the process of booking a few different locations at the moment. So if they can be signed up to, they are going to be free because the money that we have managed to get will pay for the activity or whatever we end up doing. And it's about for me.
Laura:I want to set up those little community groups around the country that will then self-run as like a little support group whether that be. They meet up once a month or every couple of months at a certain location, and I've managed to do it in a few areas. There's definitely a. There's one in Brighton going, there's one in Essex, we've got a little Norfolk one, which are completely unrelated to the actual national secondary sisters, but they've sort of stemmed from the fact that we do what we do and it's really lovely to see that I then I haven't got to sort of watch over these groups, because they're their own little groups, but people are having these and meeting up and able to to.
Laura:I mean, I met one woman who had never in five years met anyone else with secondaries and came to one of our meetups, and she literally was just like thank you, I've now found my community, I found my family, which is just amazing to know. So keep an eye on the. We haven't got a website. We've just got the Instagram page. We do have Facebook, but it kind of we concentrate more on the Instagram. So, keeping on that, though, we've got a channel which, again, people can sort of request to join, which means that then I can put things on there if we're doing an event and so people can then know where to sign up. But yeah, just keep an eye and if you've got any questions, you know you can either message me on there or you can message me on my own page, which is just at ball to be written beautiful.
Carsten:And that's beautiful. Thank you so much for sharing. I hope many people, many listeners, will benefit from that. I will share these links in the show notes as well, so you don't have to remember them. But yeah, that was cool. So okay, we're wrapping up quickly. A few quickfire questions, as always. What's one thing that always lifts?
Laura:your mood. No matter what, my dog definitely always happy to see me the favorite song to blast when you need a pick-me-up you know what one of the songs I always like play in the car. If I just need a bit of a yeah, a bit of that, is either something like breakfast at tiffany's or it's the greatest Shirley Mann soundtrack. Can't beat it.
Carsten:Wonderful, the most unexpected thing cancer has taught you.
Laura:I'd probably just say that life is short and no one knows how long they've got, and we need to just appreciate every day, whatever situation we're in.
Carsten:Perfect One word to describe yourself before cancer and one word to describe yourself now.
Laura:Before cancer, I'd probably say workaholic, I literally put everything into my job. After cancer content I live in the moment I'm more content.
Carsten:What's one thing you wish more people understood about living with secondary cancer?
Laura:The toll it takes, I think on the mental strain. I think when people look at you especially as a secondary diagnosis, often you can look quite healthy and I think people sometimes underestimate what is going on internally, whether that's physically or mentally, because it's really hard to describe, it's really hard to show that side of it when you look well on the outside.
Carsten:The best book or resource for breast cancer thrivers, besides secondary sisters.
Laura:I'd probably say if it's breast cancer secondary, I'd definitely say places like Breast Cancer Now are incredible. They've got such a lot of resources out there and you've also got the lovely Liz Oroyedan who does all the myth-busting cancer stuff. She's got a couple of books, but equally she's got a great Instagram page which sort of tackles a lot of stigma around cancer and describes it in a very palatable way.
Carsten:Wonderful. That was a beautiful conversation. Before we wrap up now, is there anything else that I might have missed or that you just want to share with the community or with the listeners? Anything that I haven't maybe addressed, or something that's on your heart or that's something you feel like you want to share, and it's totally fine if not maybe addressed, or something that's on your heart or that's something you feel like you want to share and it's totally fine if not.
Laura:No, I think I, I think I've gone through, yeah, I've gone through most things that, yeah, happy to happy with what was spoken about. It's brilliant wonderful.
Carsten:I'm really grateful for the conversation. Thank you so much, laura, for everything for your time, for your insights, for your positivity, for your energy. I think you got many more years in you and I hope you can inspire many other people to live with this mindset and with you know, with the right community around you, and live a happy life. Thank you so much. I really appreciate you, thank you.
Laura:It's been wonderful to chat.
