Episode 42: In conversation with Kala and Emily: Living with metastatic breast cancer
We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.
Let’s be Upfront about living with metastatic breast cancer. Metastatic breast cancer is breast cancer that has spread beyond the breast to other parts of the body. It is an incurable disease, requiring lifelong treatment. Currently, there are advances being made in treatment, which means some people are living for many years.
Joining us for this In Conversation episode are Kala and Emily.
Kala was diagnosed with stage 4 de novo metastatic breast cancer in her spine and liver in 2018. Following her treatment, she received a complete response. However, in 2019, Kala developed brain metastases and sadly she died in June 2022. She recorded this podcast for us in the hope that it would support other people living with metastatic disease.
Emily was diagnosed with early breast cancer in 2019. She underwent treatment and surgery and was in remission. In 2021, after feeling something wasn’t right, Emily had scans which showed that the breast cancer had spread to her pelvic bone and liver. Emily has since undergone further treatment and surgery.
During this candid conversation between Kala and Emily we’ll hear their stories, biggest challenges, how they coped with their diagnosis, what resources they found helpful, how they have adjusted to lifelong treatment, the financial impact and the advice they have for those diagnosed with metastatic breast cancer.
This podcast was recorded in April 2022.
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- Cancer Australia Metastatic Breast Cancer
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Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Sussan.
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Ad [00:00:00] BCNA’s Helpline provides a free, confidential phone and email service for people diagnosed with breast cancer. BCNA’s experienced team will help with your questions and concerns and provide relevant resources and services. Call one 1800 500 258 or email contact at bcna.org.au.
Kellie [00:00:36] Welcome to upfront about breast cancer. Let's be upfront about the challenges of being diagnosed and treated for metastatic breast cancer. Metastatic breast cancer is different for everybody. Some people have lengthy periods of disease stability, while others have a more difficult experience. Many say it's the unpredictable nature of how their disease will progress and the uncertainty of what lies ahead. That is the most challenging aspect of their illness. Being diagnosed with metastatic breast cancer can be isolating and lonely. But it's important to know there is support available. Joining us for this in conversation episode are Kala and Emily. Kala was diagnosed with stage four de novo breast cancer with spinal and liver metastases in 2018. Emily was diagnosed with stage three early breast cancer in November 2019, only months after giving birth to her second child. She was then diagnosed with metastatic breast cancer in 2021. This episode of Upfront About Breast Cancer is an unscripted conversation with our guests. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical option. Please exercise self-care when listening, as the content may be triggering or upsetting for some. Over to Kala and Emily.
Kala [00:02:01] Hi Emily. So lovely to chat to you.
Emily [00:02:03] You too. I was diagnosed originally with stage three breast cancer, oestrogen positive and I went through all the treatments and made it through to remission in August of 2020. And we took a while, about six months actually to get my marines. I guess the dosage at the right level with minimal side effects so that I could still operate in my lifestyle with my two children and working. And by the time we finally got that right, I enjoyed, yeah, two months of living, I guess, what we could call a normal life after cancer. And I ended up being re diagnosed in February 2021. After I spoke to my doctor and pushed for my early scans to be done because I just knew in my gut something was wrong. I just, yeah, kind of feel it. And so since then, I've been living with stage four breast cancer. How did you go with your diagnosis?
Kala [00:03:10] It's a rough ride, isn't it? Well, I I I was diagnosed straight up with metastatic breast cancer, so I had no idea whatsoever. I just I was in a lot of pain. I had had a lump about 14 months. I think I remember exactly before it was a medical appointment for the kids. It was just something that I tacked on the end. I said, Oh yeah, and I just noticed this funny little lump in my breast this morning in the shower. And would you mind having a look? And he gave it a feel, and I said, it's not a tumour, is it? And he said, No, it won't be a tumour. It'll be something that happens when you're breastfeeding. So I said great. But I said, you know, we were about to move overseas. So he sent me off for an ultrasound, and the scan showed nothing worrying. So it is what it is. That's what you want to hear. Obviously, that's what everyone wants to hear. And so off we went. But then about a year later, everything started to not go right. My body just wasn't right. But you started busy because then I had a four year old and a sort of three, one and a half year. And life is just so busy. And I don't know how it was for you because I know you. You had a young family as well, but you don't prioritise your own health.
Emily [00:04:28] No you don't. And that was exactly the same thing when I was originally went to the doctor, you know, we were actually renovating. We weren't even living in our house. So we were living in a small two bedroom house that we were renting. My priority was building the house to get back into it with my family, my new baby, 100 percent correct. We don't prioritise ourselves, and I vividly recall feeling a lump in the shower one day, just washing, the same thing. And yeah, and my two year old daughter was like, Mom, you know, I had woken up from her nap, so all of a sudden forgot the lumpand went back to my life, you know. Two weeks later, she ran up to me after day-care to give me a big hug, squished me in my breast and I just yelled, I was in so much pain. Oh yeah, I went to the doctor, but I went to the doctor. And even the doctor goes, Yeah, it sounds like mastitis. Yeah, you know,
Kala [00:05:23] I think that's what happens because I had no history of breast cancer in the family. No history of cancer at all.
Emily [00:05:29] Yeah, OK. Wow.
Kala [00:05:30] And a doctor sees a healthy because I was thirty-eight when it happened. And they see a healthy 38-year-old woman, and they don't think cancer, no one does. Unfortunately, because I'm just meeting so many people who that's how it played out there may be needs to be a little bit more consideration given to cancer when stuff like that happens, because that lump and I I have to console myself with the fact that it was stage four at that point because it would be too heartbreaking to contemplate that it was an early stage at that point. Maybe it was. I will never know. You can't turn back time. But 40 months later, I was in a lot of pain. My body was collapsing. Like you said, you just know something is not right. Yes, I went to have a scan to find out what was going wrong. I was in. I had the same as you like spinal pain. Everything was looking up, you know, and I was putting it down to still breastfeeding. I was still breastfeeding. That point, I asked. My youngest was 18 months. I was still breastfeeding at that time. You know, in awkward positions all the time, it would have something to do that had something to do that once again. You know, your health is on the backburner because the kids, you know, everything's so busy. But no, I got horrifying news and this was at two am because I presented at the emergency because someone had advised me, Listen, just go up and get the scan, find out what's going on. And so I was by myself at 2:00 am in the morning in Jerusalem, and someone told me I had cancer. Oh my gosh. It was, and it was stage four. I'm going to cry because it was a shock. Yeah.
Emily [00:07:12] So of course. I mean, yeah, I was 30. I just had my second child. She was five months when I got finally got my diagnosis. It was a whole month of tests and scans
Kala [00:07:25] That would have been excruciating.
Emily [00:07:28] And my other one, yes, she was two.
Kala [00:07:30] So, so little, so little.
Emily [00:07:34] They had no idea what was going on and the shock of going. I've just got my life back on the right track with building our family house. He is my little family and now boom! Yeah, it was a huge shock to the system and I know that we we went through the mammograms, the ultrasounds. It was in my lymph nodes into the whole let's do all the full body scans.
Kala [00:07:59] How do you find the scans? Are you OK with them?
Emily [00:08:03] I'm okay with them. And you know, actually, it's kind of ironic in a way now. I think because of my family life, I actually enjoy the half an hour of learning in silence in a deep sleep zone. But yeah, I mean, the ones where I have to get my injections done, it's terrifying. I think, you know, I've had all my lymph nodes removed from under my left arm, I can only use my right arm for injection. Wow, you really have one good banging. The chemo has really terrified my veins like they just show up, they collapse. So every time I have to get a nuclear one done where they inject the dye, it's a horrible experience and I just literally come out with bruises all over my arm because they just tried to get in so many times.
Kala [00:08:51] Emily, you got your first informational diagnosis with stage three, which would have been already terrifying enough. Was it scarier or less scary to get the stage four diagnosis?
Emily [00:09:04] There was two things that really prepared me well for my second diagnosis. The first time I was in complete shock because I literally thought it was mastitis. And if my doctor said, you know, don't beat yourself up about it, because with everything going on in your life, it's completely normal for you to diagnose yourself with like an even before she looked at me, she goes, Yeah, that makes sense. Since I showed her, she looked concerned. So I started to have that train of thought, OK, maybe it's not. Mastitis is discovering a different way with this second one. I again spoke to my GP because she's the one that gives my monthly hormone injection, so we have it checking every month. And she just asked, How am I going? And I said, Look, I'm getting pains in my chest. And I said, I can't really describe it. I just know I've had it before, but I don't really know what's going on. She sent me for ECGs and heart checks, purely as I had left sided breast cancer. So when I got my radiation, there's that risk of having it hit, you know, the heart you or she wanted to check that all out first. It was all clear, which is fine. That's what I expected. And then that's when I said, I need I need this scan because I just have a gut feeling. Yes, and because I've been with her for so long. And I think that's also the benefit of having a GP, a family GP like she's been there through all my pregnancies, all my babies, everything. So she knew the history. She knew me as a person, so she was quite happy for me to go early. She trusted my own judgement, which was lovely
Kala [00:10:38] and you were right,
Emily [00:10:39] and I was right. The thing that my medical team, my oncology team did was as soon as I went into remission and I was again checking in with them monthly as well because we were trying to get my hormone dosage right was they just kept saying to me, look, we feared that it's coming back.
Kala [00:10:56] You kind of were given a bit of a heads up.
Emily [00:11:00] Yeah. And they were like, Look, we're hoping we can get you to that 5year mark before it comes back. Yeah, but they were very clear. I mean, at the time, it was a bit confronting, but I really appreciated the honesty. I really did, and it gave me the information to be able to go on to BCNA and search for the information I needed to be. I guess I do believe that knowledge is power because now I've got all this knowledge about, you know, stage four cancer so that when I was diagnosed, I was able to ask the right questions. I wanted for my treatment plan because I had been prepared, I guess, for such well, I wasn't really a long time, but you know, better than I was the first time around, so I wasn't really shocked that it came back. I was shocked how quick it came back. Yeah, that was the shock I was overcoming. Not necessarily the diagnosis. It was just that time,
Kala [00:11:56] The missing out on the year that you thought you might have had. Absolutely. Yeah. I'm glad that you were kind of prepared for your second diagnosis when it was stage four and you were ready for it because it is a pretty rough thing to hear from your oncologist. As I said, they told me at 2am in a hospital in the on the other side of the world from my, you know, family and friends that I had stage four and I think I just slipped down. I sort of lost the capacity to even process things. It was just too much. It was that kind of information coming down on me and we had just moved to Israel not so long ago. So we did have a support network, but no family around. I remember calling my husband in the middle of the night saying, saying it's cancer completely did not expect that at all. I was in such a state of shock that I wasn't even upset I was. It was just sort of unfathomable that this was happening. The worst part for me was calling mum back in Australia. It took me a week to call her because I did scans, and within a week they had confirmed the type of cancer and the treatment I was going to start and everything like that. So it was quick for me to have it confirmed. And then calling mum was the worst because I knew it would destroy her, so I didn't tell her it was stage four and I should have, and I regret doing that to her, but I think I was still processing it all at that point. I did understand what they were telling me. I understood what stage four meant I had nothing to do with cancer, no family, no friends, nothing. But I'm a researcher like so I was straight on the internet, googling everything. What is this? You know, my metastases showed up in my liver and my spine initially, and so my liver had swollen with all the tumours. So that's what they were focusing on. They thought it was a hernia or something they didn't know, but in fact, it was just so chock full of tumours that it had all swollen up. So they took the first scan and said, Yeah, we're seeing something that doesn't look good. What was that lump you mentioned in your breast that you'd seen 14 months ago? And then they did a top scan and they were like, Yeah, it was stitching it all together. And, you know, have you lost weight recently? You're feeling not well, are you? And I said, I don't know. I thought I was okay, but obviously not. And I said, No, you're not okay. And from that point forward, I really got on online research everything, and I was sitting there in the waiting room going between scans, going, What? What is this thing that I have now? You know, what is what is stage four breast cancer mean? So I was sort of calling myself up on it and it wasn't good. What I was reading was not good at all. It was terrifying. I went into sort of I shut down for a month and tried to process it. I sort of gave up hope. I lost actually in that first month based on the things that I had read. So I don't know. Sometimes Google helped. Sometimes it doesn't help at all. How about you, though? How did you break into your family and how did they receive it?
Emily [00:15:16] Yeah, I mean, we've got cancer in my family, not breast cancer, though. So I don't know if that's a good thing or a bad thing, actually, because my grandfather passed away from lung cancer, but it was stage four, so it ended up in his brain and that’s what happens in the end, so telling my my family just even saying, I guess the C-word in front of them, it just brought them right back to that time. So that was hard because we had an experience with stage four cancer. And even though my original diagnosis with stage three already was doom and gloom for them because of the past experience. So that was kind of hard for me because I was trying to be like, No, it is just the good cancer its like, you know, it's breast cancer. It's got all this funding. You know, this is really treatable. You know, there's like, it's a good prognosis. It was I was kind of working a lot to try and convince them. I guess in the beginning, the one conversation I can summon up again was with my mother. Now I live in Sydney, but my my family's actually down the coast. So in terms of location, we're not close. So a lot of stuff did happen over the phone as well, and I told them from the get go, I think that's what I learnt from my first time around was like, I said, Look, I'm going for this scan, just not feeling right. So I kind of just, you know, kept them up to date with everything that I was doing, even if perhaps it was useless information. I just thought, I'm keeping you in the loop because I didn't want to deal with that shock again, because that was tough the first time. And I guess it, it was better news than the second time round, and I knew that they didn't respond well to that. So I was really worried how everyone was going to respond. The second time round and oh, my family had no words, they couldn't speak to me. In fact, they didn't speak to me for a while when my mum finally picked up the phone and called to check in. She basically said she knows cancer is not like the chicken pox, but they literally thought this was you. They themselves weren't ready to go through this again, and it took them a long time, I guess two to eight months after I met up with my auntie for lunch one day and she just said, Look, I've got nothing to say to you, like, what do I say?
Kala [00:17:44] It's true. People don't know what to say, and I don't blame them because I don't think I'd know what to say either. If someone told me, people really rallied around me, though, and I'm sure it was the same for you, your friends, they I think they go into shock as well because and it makes everyone else feel quite vulnerable. They realise that it could be them and the statistics are not good. It's one in seven women get diagnosed. So I think everyone said to me, actually, when I told them our circle of friends, they all said they all just grabbed each other tight because they were like, This can happen. This is this is now in our face and we see that it happens. And then they grabbed me tight and I did have wonderful support from friends. And because I had the little kids, my family that came over to stay with us in Jerusalem to support us through that rough few months where you start out treatment and everything goes haywire. Did you lose your hair?
Emily [00:18:45] I sure did. And it's actually I think it's kind of a funny thing at the moment now with my girls because they were so young. You know, and it's quite nice to look back on those photos and I'm like, Mum, where is your hair like? I went to my first chemo session and they advised me. They said, You know, you got really long hair like my hair was like down to the bottom of my rib cage. So I had really long hair. And after having, you know, such a great pregnancy too, I had all that extra hormones to have the beard, you do. So they advised me, You know, why don't you cut it short? Do a little pixie cut and you'll still lose it, but you'd lose it less gradually because of the weight of it. So I did that, and what was so wonderful was my friends actually bought us a family photo shoot. So we went with my little pixie cut and got these family photos done, and they're now sitting on my lounge room wall. And every time I look at it like I might be having, you know, not a great day, but I'll look at it. And it's kind of like that was the capture of the start of my journey. I might be having a crappy day, but look, everything I've accomplished, you know, that's that's how I look at those photos, and losing my hair was a big thing. The best thing is that the girls enjoyed washing my scalp in the shower, you know, because they hated getting their hair washed. So I'd be like, I'll wash your hair, you can wash my head. We've had, I guess, that kind of bonding and that stuff together, which is really made me appreciate certain things, especially the function of eyelashes
Kala [00:20:18] and how they define your face. When you lose your eyebrows and eyelashes. It's it's a really weird thing, isn't it? Yeah, I've lost my hair three times, so I started with long, blonde, longish shoulder length blonde stripe. Have lost it all with chemotherapy the first time around, and then it started going back even before I finished the chemotherapy, and it grew back sort of the way it was before I went with a mohawk for a while, which was fun. I'd never done anything exotic with my hair and I had tracks down one side. It was I had a lot of fight, actually, and then I lost it all again because I had to have whole brain radiation that made me bald again. And I think I lost my eyebrows and eyelashes again with that. And then I lost it a third time in patches, which is pretty much you've lost it because you can't walk around with sprouts here and sprouts there. So fortunately for me, being in Jerusalem, everyone wears a headscarf, so I blended in. It was great. I didn't ever have a wig. Yeah, I'm probably set to lose my hair again with new treatment that I'm going to stop. But this time it's going to be a different story. And I'm I might consider a wig. I never wanted a wig. I thought it would be uncomfortable and unnatural. And but this time I'm thinking, I just don't want to stick out. I don't want to. Did you wear a scarf?
Emily [00:21:48] I didn't know where anything. I guess I had just the little bamboo caps on my head. So when I went through chemo, it was summertime here in Australia, and so I work for some protection. I wore it when I was swimming and everything actually it was quite nice in its cooling effect, having that on my hand while swimming. But I had really bad hot flushes, menopausal side effects going on. So just even having the bamboo little cap on my head just to go hang out the washing so I didn't get burned on my head. I'd come back in and I have to strip off, have a cold shower. I was so hot.. So the thought of even wearing a wig was like just a no go. And I actually received so many compliments, and I think that helped boost my confidence. I had people going on, You wear it so well, like, you're in your head. So beautiful, this nice.. So I really think that was it, and I guess I am myself just tried to arrange it a little bit. You know, I went and bought some really big earrings and just tried to make it fun. I've got a selection of really bright, sparkly earrings now, too, so I kind of just embraced it because I just thought, this is who I am. You know, why should I be anything else, any as I'm going through this? And that's okay. And there's a lot of people out there that are going through things, whether it's cancer. So let's just be kind and respect. And that's kind of just how I went with the boldness
Kala [00:23:20] that's really inspiring. Maybe I'll take a leaf out of your book when I lose my hair and just rock it. So your kids, how did you sort of discuss it? Because the hair loss thing is a thing, right? You can't avoid that. They see that. So the conversation has to happen. Did you have a conversation with them? Was it? I mean, they were a little. So that was their reality, that mum didn't have hair.
Emily [00:23:46] And to be honest, even now, when we look back at family albums they don't remember, I was the same as you. When was my chemo changed to the Taxol? It sort of just grows back. And I guess the other advantage in a way was we went into lockdown, so I wasn't really concerned because I wasn't really going out and it just became part of who I was and it was fine. And then by the time it came out of lockdown, I had hair and I was like, normal again. I could just look like I got a cool haircut done.
Kala [00:24:20] It's so amazing that our experiences is so paralleled because I was diagnosed in two thousand and eighteen in October, which is ironically the Breast Cancer Awareness Month. Yeah, it's everything for me happens in and October. I was in Jerusalem, so I don't know if you remember, but Israel was one of the first countries to lockdown Israel Palestine, so we went into lockdown at the end of March. I think I remember April and once again with this weird period where, yes, I had just sort of been diagnosed with cancer, but it was actually a lovely time because the kids were home. They weren't going to school. My husband was working from home and we lived in a an apartment block with a lot of friends around us. So we were all in lockdown together, so we almost sort of cocooned together and I had this support group. It was I actually remember the time as a really happy time because we went into lockdown for six weeks. And by that stage, I'd gotten over the shock of it all and I started to learn to live with metastatic cancer. I think the lockdown happened in Australia because you were diagnosed at the end of that year.
Emily [00:25:31] Yeah, it was very interesting. I think it was so very. Up in the air at the beginning, and I remember sitting in the chemo ward, someone was about to head into surgery and she just said the nurse mentioned to her, if I was you, I would just isolate yourself from everybody, even though you don't have COVID because the last thing we want to do is postpone your surgery. And I thought about it for a second because in my life, I've got two young kids at day-care. My husband is a printer technician in the city of Sydney, and I work at a primary school. So when I put all of that together, I was like, Oh, all the germs. The four of us would bring home a daily is just nuts, and I was like, That's a really good, valid point she just made and I just kept it in the back of my mind. Yeah, by the time we actually went into lockdown, it was right on my surgery. And I guess what made it tricky for me was going back to that. How have your kids handled it? My kids haven't been involved purely because they haven't been allowed to, to keep everybody safe. And it's only been just now that the girls have been able to come with me to my monthly appointments and they see me get my injection now. Whereas before they come home and I take like, you know, my shirt off to get changed and I do see the band at the back. Oh, what's that? So they were asking lots of questions, and I guess I just tried to create it as our normal. So I take them to the appointments and I do ask the question still, because they're two and four now and they're curious and I'm just open and honest with them about it. I've got lots of scars around my breast, which again, every now and then they'll be like, Oh, what's that from? And we'll talk about it again. And yeah, I mean, as they're getting older, I'm going to a little bit more detail about it, but I'm staring down the barrel. Like right now, actually, like tomorrow, I get my results from my last biopsy because I haven't had a mastectomy yet, purely because when I was first diagnosed, I had a five month old and I had the option of a mastectomy or to go down chemo, then lumpectomy. And when I had that, twenty four hours to make a decision of having more babies, you want to do IVF, what surgery would you like to do? And again, a similar thing to you. I kind of just went into shut down because I was like overwhelmed too much. And then I looked at my life and I was like, I've got a five month old. Yeah, sure, I might need a surgery later on. The cancer might come back later on, but at the moment, I'm not going to take away that time I have with my five month old who I needed to nurse. No, I wasn't breastfeeding because she wouldn't feed off me, which again is an interesting point in hindsight as to was it there earlier because she wouldn't latch. So, yeah, I decided that my lifestyle and cuddling my five month old was more important in getting a mastectomy where I wouldn't be able to hold my baby for a very long time. I can't tell you how grateful I am that I chose that because when I got re-diagnosed, it was the feeling in my breast that it was back. Yet telling my friends and family the first time now I thought, Why don't you just doing this? Why don't you just chop them off? And I was like, Whoa,well because I want to cuddle my kids, you know, like, that's where I was at my life. And there was no guarantees, mastectomy or lumpectomy that it wasn't coming back. So I chose the easier option for my lifestyle at that time. And the same thing happened again. So when I got diagnosed with stage four, I still needed to have surgery on my breast because the lump was so hard, it was so painful they needed. I couldn't sleep. It grew to the liver and they just had a microwave ablation. And lucky for me, they yeah, they got it in. The liver gets checked every three months, but it's clean, but it's also in my pelvis. So once they radiated that they were happy to do surgery, but they said to me, Look, you've got the same options because if you have a mastectomy, that's great, but you still stage four, what do you want to do? And after having four months of lockdown and heading into Christmas, I was like, Well, I haven't lived. I don't think for two years cancer and couldn't have walked down. I just want to live my life. I just want to be with my kids and have fun. So again, I chose the lumpectomy option because at that time I was like, This has been tough and I haven't felt like I've been able to breathe. And I don't know about you, Carla. But with the stage four, this is where it differed from me to stage four. They keep telling me quality of life, quality of life, quality of life. And when they asked me this question, I was like, But I haven't had a quality life. Like I've been going from scan to treatment, scan treatment, treatment, treatment, and now you want me to choose little surgery or big surgery. So I chose the little one because I was like, I just want to live, even if it's only two months or whatever. I just want to feel like a normal person and live my life, enjoy my kids
Kala [00:30:20] have the energy, have the capacity to move around. Are you able to get any breaks like day to day you're at work, which is phenomenal. I think I get really tired. I don't think I could do that so. I'm in awe of the fact that you get up and go to work every day. Are you choosing to do that to bring normality into your life or is it because cancer treatment is expensive? What led you down the path that continue to work?
Emily [00:30:50] Well, first of all, to backtrack again to being a mom, I went back to work just to be Emily. It is to be normal. Yes, it is financially because I have a mortgage, I have two kids. And yes, my husband needs to be a full time worker as well. But you know, we live in Sydney and it's expensive and kids are expensive, then yes, it's to pay for medical staff, even they're going through the public system. I've still got a budget in my, you know, monthly budget of like my medications. They're not covered completely on. My scans are not covered, completely lack. So I'm going to have all of that in the back of my mind. And the other thing is, I need to be ready to have a scan the next day and have the money sitting in my account. So I need to have that, I guess, sort of sense of security financially by having my job because I am only 32 like, I'm not anywhere near being able to, you know, even look at using my super life or retirement or any of that kind of thing. So I am grateful to have a bit of normal.
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Emily [00:32:32] So, Kala, you said that your aren't working at the moment, is that a decision you made because of your diagnoses and how do you feel your time day today?
Kala [00:32:42] Oh, I hadn't resigned from my job. I used to work for the government in the Department of Foreign Affairs and Trade, and my husband also had a career in international relations. And when I fell pregnant with my first son, we made the collective decision that we would follow his career for a while. So I resigned then and became a full time mum, which, as we all know, which as we all know is the biggest shock. So I wasn't working when I was diagnosed, which is probably good and bad. Good because then I could just devote my time to treatment and looking after myself for a change. But bad because, as you said, there's no distraction. Then it just becomes that's who you are. You have cancer and you're dealing with that on a day to day. There's nothing to sort of take your mind off it other than your daily tasks and friends and family and things like that. Three and a half years ago, I was diagnosed. I don't define myself as someone who has cancer sort of thing. That's not that's not me. Like you said you, your Emily, this is who we are. We we are people. We don't just exist in the in the prism of breast cancer. But I started thinking early on in the pieces things that I want to do that I have been saying all do that, you know, later, later, later. And one of them was write a kid's book and I'm finally done that. And that for me, has been a great thing because now I'm an author. And that's fun to be able to say. That's something that I've wanted to do since I was really little. That feels great, and that gives me something on a day to day now to think about other than have I booked in my appointment. Have I got enough supply of my drugs? Now I'm like, Oh, someone's calling me for an interview? That's exciting and fun. It's called pink punk mom. At first, I was kind of dreading having to talk about everything again because day to day, I just live a fairly normal life. This has given me something else. Another path to follow is something else to occupy myself with and another identity. So it's fun. Yeah, it is fun.
Emily [00:34:52] That's awesome. Did you find your book whilst you're writing the book like therapeutic in any way?
Kala [00:34:58] It was actually it all came out of me. One day I was I sat in a park and the whole story came out. It is my journey with my kids. It's about being diagnosed, losing hair. The pink punk mum is the punching it up when the hair grows back because that was fun and we coloured it all pink with the kids and everything like that. So that was a fun moment, and the point of the book for me was very much to give people some hope that the path ahead isn't just going to be miserable and horrible with small kids. And I think it's really important for other women out there. But I certainly when I was diagnosed, it crashed me for the first month. I said, you know, like I said, I was just out of it. I quit, I was a zombie. I couldn't function. I thought I was going to die. I gave away clothes. I stopped caring about things. I thought that was it. And then what turned things around for me was a conversation I had with somebody who was six months ahead in their journey and they were doing really well. And that changed everything for me. It gave me this sense of, OK, things might be OK for a while. You know, like you said, month to month or even for a couple of years, things might be OK and I need to. That conversation changed my life because I had given up. And then hearing someone's positive story that she had, she had gone into remission. She's still in remission. Four years on, which is amazing. And she had stayed. She was diagnosed as I was made to know very straight up everything exactly the same situation. And you need to hear that. You need to hear that things are going to be OK. You will have fun. Don't give up. Hold onto hope. And make sure the people around you hold on to that hope. You need, you need. You need to hear it, so the book, I hope, will do that for someone out there somewhere. That will read it with their kids, and they'll see that life goes on. There's still fun. Don't give up. Believe that things are going to be OK for as long as they can be OK.
Emily [00:37:11] 100 percent agree with that.
Kala [00:37:13] Just going back to your day to day, you still, I mean, your kids are still really small and you're working. My goodness. How are you day to day? Do you sometimes collapse? Please tell me you do. Because sometimes I do.
Emily [00:37:29] Oh yes, I do. I actually give myself time at the end of the day to be like, This is the nothing time so I can fall in a heap. Because to me, it is everything to be able to get up and to be able to move around and do everything I can to the capacity that I can on that day. I have days where I can't move a lot because the cancer now is in my joints, so it's in my pelvis and it's heading into my femur. So it's really in my hip joint now and my girls. Do you understand that mommy can't bend down? So I'm grateful that they're no longer sitting in a high chair, dropping things on the floor on purpose because I can't bend down, it makes things a little bit different. So packing up, surely different. You know, we'll place the basket there and we'll play basketball to pack things away because I can't keep bending down. So I guess for me again, going back to the moments and memories is taking that moment of packing up and turning to a fun game or a memory for the kids of, Hey, remember when we played basketball with mom on the floor? Yes, for me, it's about the cancer thing, but to them it's not. And I think I'm really aware you of I don't want all the memories of mommy to be about. Oh, because of cancer. There's that side. And then coming to school, I guess I'm a bit lucky or blessed in a way that I am a teacher because I'm on my feet all day. And for me, actually moving, having that movement, it helps the joints as opposed to sitting all day. That's when I am the sauced. So things like travelling down to see my parents in the car for two hours. That's tough. And I know that as soon as I get there, the last thing I want to do is sit down and a family dinner because I'm going to be really sore so many about moving but moving as much as I can during the day. So I like my husband, I've said to him in the morning is the worst. I feel like the oldest old lady out there. I can't get myself out of bed. You know, it takes me a good five minutes to basically warm up my joints, to be able to walk downstairs of my two-story house. Those little things that I've had to kind of fit into my daily schedule so that I can function for the majority of the day to its fullest capacity as I can, but also recognising when I can't, it's OK just to sit and do a bit of craft or not go for a walk with the kids that day. Again, that's a day to day. How am I feeling? What can I achieve today? Kind of thing? And that that can be tricky when you're trying to make plans with friends or family about doing things on weekends. Because for me on my medication, I have three weeks on, one week off and by my third week on the medication, the fatigue is real. So that weekend I can easily explain my Netflix weekend because that's what I need. And I'm open with my friends and family. They understand that. So when I say now, that's my third weekend, I can't do it. They get it. So I guess I complain a little bit in a head knowing my side effects now. But I mean, it's tough. No day is the same.
Kala [00:40:24] You wake up and you just don't know what's going to happen or you don't go to sleep. As the case is for me, the moment I actually have fortunately avoided a lot of other than the original pain before I went on to treatment. I haven't had any problems physically. All of the problems I've had have been related to the side effects of my treatment. So things like fatigue, extreme fatigue, dizziness, because now I'm clear for the rest of my body. I had no surgery. I just went on to systemic treatment and it cleared everything up in my liver and my breast and my spine. But then in October 2018, I was diagnosed with breast cancer de novo stage four and then October the next year it had spread to my brain. So now it's exclusively in my brain. So all the treatments in your brain, and that's hard because I'm having radiation and you get swelling from the radiation. So I'm dizzy. I'm tired. That's no good at all. That's no fun at all. And I'm not allowed to drive at the moment because I've just recently had radiation. So the side effects for me or the the physical difficulties I experience directly related to the treatment I'm receiving. So that's a bit tricky. But I am grateful a lot of pain at the moment. So I feel for you with the pain in the sitting and and the discomfort, it must be really difficult. Yes.
Emily [00:41:53] Yeah. I mean, the difficulty with it, I guess, is that pain management. Is things like endurance, which then make me not be able to function because I can't drive because they make you go to sleep, I can't function at work. So the pain management stuff is there, but I can't use it to its full capacity because then that comes back to affect my quality of life.
Kala [00:42:16] It's a balancing act, isn't it? It's constantly deciding what's more important medication or fun. So at the moment, I need to try something new. I don't know how many levels of treatment I've been through now, but quite a few. And there's a really good drug that is coming out for my particular. I have HER2 positive and hormone receptor negative, so not that I've had nothing hormonal at all. And the drug is in HER2. It's been through all the trials. There's still trials going, but it's now available in certain places. It's been approved under the Therapeutic Goods Administration in Australia, but it's not being listed as a PBS drug and it's very, very expensive. It will cost eleven thousand dollars a month to have it. And I mean, that's astronomical. It's one hundred thirty two thousand dollars a year or something like that. So at this point, it's the drug that I need. I'm in discussions with my oncologist how I can possibly get it, but I can't get my hands on it for less than a hundred and thirty thousand dollars a year. At the moment, so that's kind of heartbreaking in a way knowing that there are drugs out there. Yeah, at the moment, my treatments in a state of flux, I'm not sure what's going to happen in the next month. I have to travel because I live in regional Queensland, so I fly down to Brisbane to see my oncologist and have scans specific scans that I need. So that's another challenge, too. I don't have an oncologist based here, so any time I need to do something, it's either on the phone or I fly down. The next one will be to decide what path I go down, what's next steps. But once again, I've chosen fun. Next, in a couple of days we're heading off. I'm heading off for the kids to Sydney. It's going to be really fun. So we're going to check out the big smoke and have a good, really good week. And then I will face the music with my oncologist after that and find out what happens next.
Emily [00:44:23] How important is a good medical team with your diagnosis?
Kala [00:44:26] Extremely, obviously. But having faith and confidence that they know what they're doing is one thing. But having them be nice, caring people is something else, and it's so important to have both. You've got to have that confidence that they know what they're doing and that they're competent professionals. Oncologists are busy people and things slip through the gaps. So you've got to feel as though you trust them as medical professionals. But also it helps so much when they're nice people. And I've got the loveliest team that look after me and I really like them all as people, and that helps so much. I feel like they care about me and I care what happens to me. I'm not just patient number four on the list today to be seen, so that's extremely important is the is the human touch and they're just wonderful people because I imagine their job is a horror show. Their day to day would be very difficult. So I appreciate that they treat me so well and I feel so cared for with them. How about you? Are you happy with your team?
Emily [00:45:27] Yeah, my team, my team's good. I have a wonderful nurse who just always takes the time to chat, to catch up with the girls. She's very much my voice at meetings and things when I'm not there, which are extremely appreciate because being a young person, you know, sometimes when decisions are made to go get tests or scans done, there are very inconvenient times for me as a mother or as a working mother. Even so, she will advocate for me behind the scenes to say, Well, that's her work day, can we move it to a different day? Does it have to be done that day? And that is something that I'm extremely appreciate because I feel like I've got someone on my side. Like you said, it's not that I'm not confident or happy with my oncology team or my surgical team, either. It's just that they're in that world where they're seeing so many people and it's the nurses for me that have really advocated for me as a young working mother to make my treatments work with my lifestyle, to try and create that quality of life balance as well. So that is something I'm extremely grateful for. So with talking with others in my same position. That's been a difficult thing purely because when I was diagnosed and I started to be able to be able to go to support groups, we went into lockdown. So that was difficult because all of a sudden when I was trying to build this rapport, friendship or relationship, with somebody else to be open and be honest and ask questions that that kind of got shut off for me. I was lucky enough to have a few people reach out over to find the breast clinic at Westmead have been amazing. They will do a bi monthly checking to see how I'm going, and that was something I did hold through lockdown. But for me, it was really listening to podcasts or reading blogs on BCNA. That was where I got the information. That's where I connected, especially during that lockdown period because I was, yeah, there was no such thing as a support group that you could go and get information. And I was so grateful to the others that had been on there and were open and honest, and that for me gave me that hope. I guess that, OK, well, it is stage four, but these people have been stage four for many years and are still here. Yeah. Similar kind of story to you, Carla. But just, yeah, mine was on a, I guess, a digital device as opposed to an actual person.
Kala [00:47:59] When I was diagnosed, I was obviously so I was in an unfamiliar sort of cultural setting as well, but I did go to a few support groups. I didn't find them beneficial, I guess, because I just didn't click with the people in person that I was meeting with a lot of older women. Of course, because it's mostly breast cancer is mostly over 50. I think.. I didn't find common ground, and I then went and forged friendships at the oncology waiting room with people. And unfortunately, I had somebody who we were supporting each other and she passed away and that was very hard. So that happens. But like I said, I then have a friend who has gone into remission and she's doing so well. So there's both sides to the story, and it's good to see both sides of the story. My friend who passed away was a young, really young mom, and her daughter was, I think, had just turned eight months when she passed away. So seeing that and seeing how she lived her life up until the end was really inspiring as well. And the memory she made sure she created with her young family was really inspiring. And then I'm also inspired by my other friend who has maybe not beaten it. She's she's sort of aware of the reality of her situation that she lives every day with metastatic breast cancer, but she's doing so well. She's going back to work. Her life is just going on as normal. So, yeah, I draw support and strength from both of them. Still, I look at blogs the same as you get lots of useful information from blogs and things like that, but I'm not involved in any direct support groups as such. But I think I'll be reaching out to you for support because you're wonderful and you're very inspiring. So yes. So, Emily, looking into the future, do you look into the future? How do you deal with the idea of the future? Is it scary? Is it bright? Is it? Do you not think about it? And do you have any tips you could give me or everyone else for that matter?
Emily [00:50:01] I guess I look at it with a bit of a sliding doors moment. I look out for my children without me in the picture what kind of decisions I would like them to make, or what kind of values I'd like to them to have as a person. And that's tough because they are two and four. But I guess that's how I approach my disease by role modelling the values and qualities that I would want them to have when they are older or teenagers. Even because I'm aware that the reality is I won't be here. Of course, we all hope for the best, but I'm also a very much a realist. And I think having such young children and this is probably my biggest piece of advice is stuff's going to happen. It's going to be out of our control 100 percent. But the thing that we can control is the community of people that we build around our family. And I've really tried to build this community of people where my girls are dancing and gymnastics and day-care. And my husband has his football team and I've got my few friends as well. People outside of the family that I know that can be there to pick up the pieces or that I'm very open with about my choices in terms of where I want to send my kids to school and how I would kind of like their life to pan out with high school or if I want to go to a uni and that kind of thing with my friends where I can be a bit more open with that kind of thing. So sharing being honest, even if it's a crappy day, just be honest. Look, look, I'm not having a good day, and it's about having that community support around you. And I think that's the best piece of advice is just build a community of people who can hold you or hold your people for when you're not there.
Kala [00:51:40] That's amazing. You are so awesome and inspiring, and you're so levelheaded about it all. It's really amazing, and it's been beautiful having this conversation with you. For me, the future. Yeah, I. You seem to have. Thought about it a bit in a bit more depth than me, I I do just live month to month and I thought I'd be dead by now. So everything for me is a bonus. Honestly, every day I I wake up and think, Oh my gosh, isn't it wonderful that I'm drinking a cup of coffee and I can hold my cup of coffee and I'm enjoying my cup of coffee and the sun's out. I'm here, I'm here, and I'm here every day. So every day I think this is great and I'm seeing my kids grow up. That's the biggest thing that keeps me going is watching them grow, having the chance now because they're eight and five. I feel like I'm actually I can influence the type of people they're going to grow into knowing that, yes, we may not be around, but I don't give up hope. Emily, I'm not sure if you're the same. I believe some way somehow things might be OK. I don't know if you've read the book and it's a very good book I would recommend to anyone who is diagnosed with cancer. Radical remission. It's stories about people who are diagnosed with metastatic cancer, so it's for everyone and they live, they live on well beyond what anyone expected them to do. That was another book. I would highly recommend that to anyone who gets a cancer diagnosis, even if it's not stage four, it's extremely inspiring. It's called radical remissions. She went in and researched all these people who thought their time was up, and suddenly it wasn't. So I hold on to that that maybe, maybe there is hope. There has to be hope.
Kellie [00:53:34] Thanks to Kala and Emily for sharing their stories with such authenticity. This podcast was brought to you with thanks to Sussan. Don't forget to sign up to BCNA’s My Journey has a range of resources for people living with metastatic breast cancer. Sign up by visiting myjourney.org.au. If you're looking to connect with others going through a similar experience, BCNA has an online network, has a peer-to-peer support community. There's also a private group exclusively for people with metastatic breast cancer. To join, visit the BCNA website. Subscribe to ensure you never miss an episode. Download so you always have an episode ready to listen to and leave us a rating and review and tell us what you liked about the episode and complete the survey that you'll find in the show notes. This survey will help us to tailor and create content that's relevant to you and your breast cancer diagnosis. Thanks for joining us. I'm Kellie Curtain. It's good to be upfront with you.