When my friend Natalie Fornasier, the inspiration and driving force for our #CallTimeOnMelanoma initiative, and I sat down to chat ahead of this post, I was nervous. I intended to give Natalie a platform to tell her story which sounds simple enough, but was anxious I wouldn’t do it justice. Would I ask the wrong questions? Would I fail to highlight the many ways in which melanoma has affected her life? Would she be unhappy with the end result? In the end, not wanting to miss anything, I quizzed Natalie for three entire hours. (Believe me when I say that equals a whole lot of transcribing.) Of course we touched on the stories of her first and second diagnoses, but we also delved into the effects cancer has had on her family and friends, how it has seeped into her psyche and the struggle she faces in not allowing it to color the decisions she makes, the realities of surgery, and how scars and an amputation have affected her dating and sex life. The conversation that follows is lengthy but I believe it is important reading for all young women.
Below, Natalie bravely shares her story. We both hope it will inspire others to prioritize sun safety, skin checks and the most vital kind of self-care—being familiar with your own body and your individual state of health. Please find Natalie on Instagram and let her know what you think. (And if you don’t know what to say, take a note from our conversation below and simply ask, ‘How are you?’)
Let’s start at the beginning, what did you know about melanoma before you were diagnosed?
I knew what was on TV. Do you know the ad with the graphic of a skin cancer cell that goes down through the skin into the bloodstream? [The slogan was: there’s nothing healthy about a tan.] I remember that visual specifically. I don’t think I knew that melanoma isn’t always sun-related. Well, maybe a part of me did because I was always having to get skin checks. My mum has quite a lot of moles so my brother and I had skin checks from when we were little.
I have always had this thing that scars are something to worry about because my mum never liked to wear anything that would show off the scars from having moles removed on her arms. She’d always be putting Bio-Oil on them trying to fade them. I asked her, “Why do you keep hiding them?” And she said, “I don’t like them.” So in a sense, I didn’t know skin cancer was such a big thing. But I knew you may need to get things removed and I knew you needed to wear sunscreen.
When I was a kid I would battle with my mum, fighting with her to not put a hat on. I would say, “I don’t want to ruin my hair!” but she would insist. She is very protective. She didn’t want to get my mole removed way back at the start when it was still OK because she didn’t want it to scar. So that’s interesting to think about now. Because who would have cared? It would have just been a scar on my toe I wouldn’t have noticed. But my toe is not there anymore.
What do you hear a lot from people about melanoma once they know you have it?
It’s common to say you’re naïve about how severe melanoma can get, or how it can impact you. I have no history of it in my family—none whatsoever. I’m South American and Italian. No fair skin. When you consider the risk factors, I have the lowest possibility of being diagnosed and that is really scary. But that’s the reality. It doesn’t always matter what color your skin is, your heritage. It can be in your genetics in the sense that something switches on and then boom, it’s there. And what’s even scarier is it doesn’t have to appear on your skin. Not a lot of people know that. Melanoma actually has to do with your immune system. Hence why now we’ve come to immunotherapy as a treatment because it works by triggering your own immune system to fight it off.
Your point about it not always appearing on the skin—not common knowledge. How would you know it was there in that case?
I guess what happens is you get telltale signs. With me, it was bruising which indicates a problem with your white cells. My friend had a lump in her neck, her lymph node just exploded in size. She had no moles around where it was or anything else. I guess it’s chance, for you to know if it’s there or not. A lot of people go on for a while not knowing that it is in their body. That is scary. Because melanoma, my oncologist told me, is one of the deadliest cancers because it lies dormant, it can hang around for ages, and a lot of the time when it is found it’s too late. It likes to manifest in places that are really hard to get rid of, one being in the brain.
That is really interesting because aside from sun safety and skin checks there seems to be another piece to the puzzle, which is to be aware of your body.
It’s quite Australian to just say, “She’ll be alright.” This is something I’ve noticed with my partner Alexander being German. He finds it very strange that the Australian men he’s come across in particular have this stubbornness. They don’t take care of themselves because it’s not cool. Your mates are probably more likely to say let’s go down to the pub than let’s all book in for skin checks. But you need to get yourself constantly checked. I don’t know how to make that happen but it needs to be a thing. You can have things inside you and not know it for ages. People also don’t always act on the fact that something feels wrong, so they’ll leave it until it is too late. This proactiveness of looking after yourself is very important.
How did your journey to diagnosis start the first time?
I was on a Topdeck tour and was on a sailboat somewhere in Greece. I had just turned 20. I had always been sun-safe, but not gonna lie, I wasn’t wearing SPF every day when I was 20. I knew I had to put sunscreen on but I wasn’t really aware it had to be an every single day thing, like brushing your teeth. Anyway, I woke up one morning after, not a raucous night, and I had 52 bruises on my legs. They were everywhere from my knees down to my feet.
I thought, did I sleepwalk? Did something happen to me that I somehow have no memory of? I asked my friends, did I fall? And of course, they said no. I got a very funny nickname. I had bruises on my knees so everyone joked about them being there from something else…insert joke here. I laughed and went along with it but inside I was thinking, something in my body is off. I was a sick kid, I had mycoplasma pneumonia when I was in year 10, and then swine flu. So I knew my immune system was shot.
You had swine flu?!
Oh yeah, I wasn’t allowed to go to school. I have such a weird medical history. This was year 10, so maybe four or five years before I was first diagnosed with melanoma. I got mycoplasma pneumonia which is harder to get rid of than normal pneumonia, and I was in a constant circle of getting better, then getting worse. I actually got kicked out of the hospital because my immune system was so fragile. They told me I couldn’t be there because they were worried I would pick something up. I was in this cycle where I would get almost better but if someone so much as coughed near me I would get sick again. On and off, the pneumonia lasted for 12 to 18 months. Swine flu came in with that. That, in some way, shape or form probably set the basis of how sick I was going to get later.
So, back on the boat.
Well, I knew something was wrong. I came home two weeks later and we went to the doctor because it had started to hurt to put on shoes. The mole on my toe had started to grow and it had become like a volcano. I knew it wasn’t good. This mole was on my fourth toe, and it was the size of a fingernail. I was very aware of it because a doctor had wanted to remove it when I was 13 but because it was being checked regularly and had always come back as OK, we didn’t. I always covered it with a Band-Aid and sunscreen outside so I took precautions.
The GP looked at it and sent me straight to a dermatologist. The dermatologist said it was a Spitz naevus and at the time I didn’t know what that was. Then he said it had the potential to become melanoma. I freaked out. My mum freaked out. They took a sample of the mole which was traumatic. They injected my toe with anesthesia so while I couldn’t feel it, I could see it, and blood was everywhere.
The dermatologist said, “I’m going to send you to an oncologist”, and as soon as my mother heard that word she lost her sh*t. He said it was only a precaution but that I needed to get the mole checked. Within two weeks I was in the oncologist’s office and she was telling me the mole had to come out because it looked suspicious. So, the removal was booked for the next day at 10 am. First surgery ever. During that operation, they also took a skin graft from my thigh to cover the toe.
At this point, I wasn’t scared yet. I knew that most melanoma is contained in the mole. In hindsight, I think I knew in my gut I had it. I came back two weeks later for my results and she told me, “Natalie the mole has elements of melanoma in it, we need to check your lymph nodes.” I was thinking, lymph nodes, what do they do? What does this mean? I went straight to the hospital.
The next procedure was the most painful thing I think I’ve ever been through. They injected hot iodine, which felt like being stung by a thousand bees, into the toe to find where the cancer could have gone. They did that three times. So you’re under an x-ray machine which picks up the hot iodine like a map and they follow it to see which lymph nodes to check. Next thing I had a big X drawn on my leg because they had found the lymph node in my groin was the one they wanted to biopsy. I was in surgery two days later for that biopsy. I was told there was an 80% chance it wouldn’t be in the lymph nodes. Anybody in their right mind would think that is a fantastic odd. If it was in my lymph nodes it was going to be bad news—that’s automatic stage III melanoma. Obviously, it was.
So I walked into this awful brown office with my dad to get the results. And I knew something was off because my dad asked straight away and she didn’t answer. When a doctor doesn’t tell you something straight up, nope. So we sat down and she opened up the folder and said, “Natalie I’m sorry to tell you but you have cancer. It’s manifested itself in your lymph nodes.” I was just hearing someone say it, like, it’s in the record, it’s there, you’re officially sick. That made me emotional. I was frightened of what was going to happen next. But it was being told those three words, you have cancer. I had this moment where I was thinking the fight hasn’t even started yet.
I didn’t cry in her office but I walked out into the corridor and fainted. My dad caught me before I hit the floor. I saw it happen, it was out of body. I remember it so vividly, watching myself fall forward and my dad grabbing me. And then my dad rang my mum and told her.
When I got home I went to bed for 24 hours and that was the only time I let myself cry to the point I couldn’t breathe. The fear was overwhelming. You think your time is up. At that moment I thought I was going to die. You just don’t know what’s going to happen next.
My dad told the whole family and there was just this big holy f*ck moment because now it was real. How do you control how your parents react to something that is happening to their child? It’s weird but for the sake of others you wish it wasn’t happening to you. You are trying to navigate the fact you’ve got cancer, and on top of that you want to protect your family, but you can’t. I felt guilty that I had roped my family and friends into this huge fiasco. Being 20, you think you’re a grown-up, but I just wanted to hug my mum and dad. Even that didn’t help though because they had no idea what I was going through. That was such a weird thing for me to really understand that my parents couldn’t help me.
What was it like telling your friends?
I sent a group message and afterward, I felt sick. They all knew what I had been going through so they were expecting an update on results and I didn’t have the guts to say it out loud. I didn’t want to hear myself say, “I have cancer”. I had this anxiety they were going to know me as someone else now, not as Natalie but “my friend who’s sick”. I hated it.
I lost friends the first time around because they didn’t know what to say or how to act around me. When you go through this your friends are the people you need to talk real with. You have those girlfriends who you tell everything to. I didn’t want that to change. My life was spiraling out of control and I didn’t want those friendships to also change. I didn’t want to see friends in person and have them make that face at me—the pity face. How do you say to people who have known you for ten years, I am sick. And how does your relationship stay the same after that? Because if you were to step into their shoes I can completely understand why trying to be there for me would be overwhelming. I guess that’s how friendships fall apart, people just don’t know how to be.
You don’t get taught how to do this, no one teaches you how to be friends with someone who is ill, what to say, how to act. But just because I have melanoma doesn’t mean that’s all I want to talk about. It’s like, please talk to me about dumb things, TV shows, that boy you’re in love with. But the thing is it always feels like I have the biggest problem, and no one’s problems live up to that. I’ll catch up with a big group of friends and they’ll be talking about something and I’ll have no idea because they’ve left me out not wanting to worry me with it. I know they don’t intentionally mean it but it’s hard because I just want to say BE NORMAL. It’s all done with good intentions but it puts me on the outside. The good friends I have remained normal as normal can be but some dropped off the face of the earth because they didn’t know how to deal.
What hurts me the most is if you just don’t talk to me. That really is something, especially this time, because I thought I had friends that if something were to be announced, they would reach out. A lot of people just didn’t talk to me. I was very taken aback. I know people say I didn’t know what to say. Say, “How are you?” Three simple words. Or say, “I’m thinking of you.”
I think people are too scared to ask because they think I’m going to unload on them. They’re afraid they won’t know how to respond. The likelihood of that happening isn’t high. It all goes back to what I was saying about how cancer puts you on the out. It’s weird to see someone out and they just don’t mention it. It’s part of who I am now, and ignoring it isn’t going to make me feel better. It’s strange to navigate social situations when everyone knows you’re ill but hasn’t acknowledged it to you. There needs to be some guidebook for everybody. Maybe I can write one. [Laughs.]
I would like those people to be uncomfortable. And I would like them to know they’ve done the wrong thing.
You’re ignoring my existence and that’s not a nice thing to do. My friends did a little GoFundMe thing and it was plastered everywhere, so saying you didn’t know, it’s a load of sh*t. I don’t like the idea of people using what I’ve been through as gossip. I’ll catch up with people who I haven’t seen for ages and they’ll know things about me they could only have found out from people talking.
So you came out and fainted. Had your day in bed. Did you allow yourself when you were in that moment to explore worst-case scenarios?
Oh yep. I let myself lose hope. I thought of every single outcome. And of course, I thought about what would happen if I die. It’s a really weird sense of extreme FOMO. I hadn’t lived life as someone who’d just entered their twenties. And for me that thought was toxic. But I allowed myself to think of that for one day and then I was like, “No, I’m going to fight.”
We went to the doctor’s the next week and she said, “You can set the date but we are going to amputate your toe and take out all the lymph nodes in your leg, and fingers crossed then we will have gotten everything.” And so we did the surgery on December 12, 2014. The night before I knew my life was going to change forever. I knew that when I woke up after surgery everything would be different. I also had a sense of hope that this would be it and we’ll have got it.
I was in the hospital for two weeks afterward because I got an infection and my whole leg blew up. I couldn’t look at my toe for a while. I didn’t want to acknowledge the fact that something had been taken from me. I know it’s little and maybe seems insignificant but it was still a part of me that had to be taken. My doctor came in needing to check the stitches but I didn’t want to look. The doctor insisted saying that acceptance had to start now. It was strange looking at my toe for the first time. When I first saw it I thought, “Oh my god it’s so ugly and alien.” I’m going to have a constant reminder for the rest of my life of what I went through. And that’s what I struggled with a lot. Was the scars. The fact that every time I look down at my leg, it’s a reminder of the first time I had melanoma.
But then, I was in the hospital at the exact same time the Sydney siege was happening, I was awake at 4 am when it finished and I remember thinking, this could be worse. I could have been inside that café with a gun pointed at my head. I am still here. I had gone through hell and had my body invaded and torn apart but I still had hope. Even now, that’s what grounds me and gives me the strength to keep going. In almost every circumstance it could be worse.
I got lymphodema six months later which I was told would happen. Basically, my whole leg is swollen and because of that, I have to wear a compression stocking 24/7. I was, and am, very self-conscious about it and showing off my leg in shorts or a dress. I wish I still did but I make that choice for self-preservation. I know I could show it off but I’ve gotten to the point where I don’t want people to look at me any weirder than they already do. I’ve reached my limit with that. It’s the one thing I can control. Because if you don’t know, and I’m in pants, or a long skirt, you wouldn’t have a clue. It’s hidden.
After they took your toe and your lymph nodes what happened then.
They said we’re good, it’s fine, let’s move forward. We did three-months scans to make sure everything stayed clear, that’s a blood test, a CT brain scan and a PET scan. After my operation, she came in and said they were pretty confident they had got everything but naturally you can never know because melanoma is dormant and all it takes is one cell to float around your body and kick things off again. But they were pretty confident.
So in 2015, they found a block of something in my ovary on a PET scan. For me having babies is the thing that I want most in life. So what happened was there was a mass in my ovary and the only way to find out what it was was to open me up and have a look. I was told by the gynecologist I’m going to open you up laparoscopically and if it looks in any way like it could be cancer I am taking it as a whole but if anything drips or it tears then the ovary is coming too. And I was hysterical.
Because for me, the thought of not being able to be a mother was scary. I was like, you can’t take this from me. You’ve taken so much from me, this is just so mean. I had a huge anxiety attack on the bed before I was going in for this surgery and my favorite nurse saw me in that state and put me to sleep early as a small mercy. It was like, I’m going to go to sleep now and when I wake up maybe they will have taken one of my ovaries out or maybe not. I couldn’t wrap my head around that. When I woke up she told me immediately she hadn’t taken the ovary because it was just a normal benign cyst. I was still super-groggy but she told me it was fine and I was very grateful and I cried. Then I had more scars to add to my constellation.
It was absolutely terrifying. It was immense. No matter the kind words, the flowers, nothing could ever get rid of that feeling. And that feeling has stayed ever since. I don’t know if this goes for everyone who’s had cancer but while it helps to know you’re loved and have people support you, at the end of the day you still feel alone. You don’t want to be ungrateful but there is always going to be a sense of, “You can’t understand”. And that’s just how it is, you’re not going to get it unless you’ve gone through it. But also, I don’t want you to go through it either!
When you’re little, your parents can make you feel safe—you don’t have that anymore. When I was a kid my mum did this thing where if I had something that was upsetting me she’d hold out her hands and say, “Give me the problem.” I would put it in her hands and she’d say, “Now we’re sharing the problem.” But I couldn’t do that anymore. Because it wasn’t something she could help me with. None of my family could. I was on my own and that is an extreme loneliness I wouldn’t wish upon my worst enemy. Although you’re not alone, because everyone is around, you can’t have real conversations like, “Let’s talk about how I might die.” I mean, who wants to talk about that?
I know it’s not my fault, but I get mad at myself anyway. I am my body, I am myself, but I have zero control over what goes on inside me. You think you’re in control. After the second diagnosis, I was so angry at my body for letting me down again. And that is a weird maze to navigate. No one teaches you to deal with the reality of getting sick. You don’t know how to talk to people, you don’t know how to think, and you feel alone and confused and scared. Like the disease itself, cancer finds its way into every nook and cranny of your life. You feel like you can never escape it because it’s constantly there in some way, shape or form. It’s always in the back of my mind.
Do you think you will feel like this forever?
Yeah. It’s a sense of impending doom. Regardless of whether you make it into remission, recovery is so fragile. You’re walking on thin ice. You’re aware of the fact you can die at any time and normal people don’t have that same cloud of doom following them around. When I talk about our future with Alexander I say “if” a lot and he gets mad at me for that. But it is an if because there is absolutely no guarantee I will get there. No guarantee I will have kids, or make it to a certain age or celebrate an anniversary. I am so aware of my mortality. Yes, no one is promised tomorrow and that’s real, but with cancer, you’re faced with the pain of it constantly. You feel like you’re suffocating. Once you come to realize you don’t have control over anything, you kind of fall in on yourself. And then you have your existential crisis. [Laughs.] I ask myself this every day, why are we here? If it’s to go through all this pain, I question if it’s really worth it because it does get to be too much.
Last night I cried. Alexander has to go back to Germany and I got super-emotional about it. And that’s what I’m saying, you can be completely fine but then your sense of life and death crashes over you and you can’t control it. It’s this constant uncertainty and it’s exhausting. For someone so young, I feel like I haven’t done enough. I haven’t done anything. There is a sense of unfairness. Why did I get dealt with this set of cards compared to someone else who gets to live a long life?
Do you feel like you grieve for parts of your life?
You learn how to cope, and you accept that it’s a part of you. It’s no wonder many people fall into depression when they are sick because it is a big thing to know you’re going to deal with this for the rest of your life. There is always going to be some sort of reminder or trigger. It’s heartbreaking but it’s a reality, and you can’t do anything about it. Alexander freaks out whenever we’re watching a TV show and they mention cancer, and he’ll say, “Should I turn it off?” And I say no. Because you can’t hide from it. If the character dies, of course, it’s going to resonate with me in a personal way. But it’s just the way it is and you can’t hide from it. You have to embrace the ugliness of it.
At the time of my second diagnosis, our relationship was still very new and I had to have a conversation with him about my mortality. I have now been through IVF so I had to ask, “Do you want me to sign my unborn babies over to you?” He tries to save me that little bit of strength by protecting me. I adore him for it but it doesn’t stop it. When I was diagnosed the first time I grieved for the Natalie that wasn’t sick, but this time I almost grieve for the Natalie that didn’t have a relationship to think about. I feel guilty because my first reaction was to break up with Alexander when I found out because I thought, you don’t know how intense this is going to be.
I interviewed a lady for one of my journalism projects and she told me about a friend of hers who was married for 20 years. She battled cancer twice and in the end, her husband left her. And that’s in the back of my mind. Because what if he wakes up one day and says, “I can’t do this anymore.” How am I going to cope knowing not only did I bring him into this and cause him all this trauma, but I’ve caused him to shut down. No human is built to deal with all of this information. It can get too much. That’s why my initial reaction was to say, I am opening a door for you and if you want to walk through it I won’t be mad because I understand. And of course, people say, he wouldn’t leave you, he loves you. But it doesn’t matter. You can love someone so much but you’ve got to put yourself first.
After that scare the next scan came back fine, so we pushed them out to every six months. By this time, I had switched degrees because my team of doctors had suggested it as a clean slate. So I started at a new university and with that came the opportunity to go on an exchange program to Venice which is something I always wanted to do. I really needed a break. I needed time off in a place where nobody knew who I was, nobody knew my story, nobody could call me the “sick girl”. By this time I felt like I had gotten back on my feet a bit, but I grieved for the old Natalie that didn’t have a cloud of doom over her head. I knew exchange could be a chance for me to find myself as I was now. All my doctors said, “We don’t know if you should do this”, and I was like…is it possible? If it is I’m doing it.
It was scary flying over because I didn’t know what to expect, my body had never done a 20-hour flight in the state it was in. I had pins and needles for 14 hours, which was horrible, but the experience was exhilarating because I was leaving Australia behind. When I landed I cried because the new part of my life could finally begin. And it was the best seven months of my life. I cried so much while I was there. I would burst into tears looking at a painting I never thought I’d get to see. There was a beautiful sense of me falling in love with myself, and I felt that the tide had settled. The crazy storms and waves crashing had stopped finally, and I could relax. It was like, so this is what life is about. It wasn’t all doctor’s appointments. But as we now know, that was the calm before the storm.
Alexander and I met at a party in a palace beside the Grand canal—so extravagant. [Laughs.] Sounds magnificent but our friend was vomiting, that’s how we met. She is allergic to alcohol and had told him if she fell sick to find me. So I get a tap on the shoulder later and there’s Alexander, like hi, your friend is ill. Later on, he walked me home, and I was like, “Where do you live?” He lived in the complete opposite direction to where I was at so I was like, ok, this is interesting! We had a beautiful chat and got to know each other. There was definitely a recognition of, this guy is lovely, but I didn’t go over there for boys. I was anti-boy. [Laughs.]
I saw him a week later and again we fell into this lengthy conversation. We kept seeing each other at events and then he finally asked me out. We had been out three or four times and then one night he walked me home and he kissed me. I got inside and I did that whole close the door, slide down the door thing. I knew I was starting to fall in love with him so from there on out it was like, how are we going to make this work. Pretty early on he said, I’m in this. I was scared because we had to talk about my history. I told him, “You need to know it could come back.” And he grabbed my face and said, “I’m not going to go anywhere.” From the get-go, I was taken aback by how much he was willing to let himself believe in me when he barely knew me. But he told me, you are the one for me. That was both beautiful and terrifying.
Before Alexander, I dated a little. Many boys, as soon as I told them, would disappear. That’s hurtful. Because you begin to think of yourself as the disease. One guy asked me why I would always wear pants, so I told him the story, and I never heard from him again. And then there were other boys who didn’t have the emotional maturity to see past it. When I was younger it tainted the idea of finding love. Being rejected time and time again, you slowly lose your belief it could actually happen. So when Alexander came along and told me it wasn’t going to stop him from pursuing our relationship, I was like, wow. He is the love of my life and I am so thankful he came to me when he did. He really meant it when he said he wasn’t going to leave me. It frightens me because there is so much we have to go through, and long-distance is a nightmare. It’s not easy. But at the end of the day, he and I are a unit now. A load has been taken off my shoulders because I didn’t think someone would have the capability to see beyond my illness.
Being intimate with someone is already intimidating so to have feelings about what has happened to your body and to go and be your most vulnerable with someone is scary. The first time I had sex after my first diagnosis I already had lymphedema and I was petrified about how my partner was going to look at me. Was he going to look at me like I’m different? I was nervous to show my true self. I had this worry of, I have scars and they’re not pretty. One of my legs is bigger than the other one. Even positions-wise, what can I do, what can I not do? I didn’t even know. I didn’t want any lights on because I didn’t want to see myself. I was overwhelmed and it was such a raw moment.
Having sex when you have a disability is a different terrain to navigate. Not only do you have to come to terms with your body, but then it’s like, what are you capable of? What are you comfortable with? How can you execute what you want to do? Should you give your partner a head’s up or not? My partner made me feel safe so I didn’t feel as overwhelmed as I could have been. But I wasn’t in love with him, and it’s a very different thing to add that extra layer of vulnerability.
When we got to that point, Alexander and I, I said, do you want to see? Are you ready to see? He said whenever you want me to see what you look like, I am ready. When he saw me completely naked, I saw a love in his eyes that I hadn’t seen before. To me, that felt like, this goes beyond what I physically look like. I’m still self-conscious about my scar. To me, it’s neon, but he doesn’t see it.
At this point, it had been four years’ worth of clean scans, aside from the hiccup with my ovary. Five years is when you’re considered to be in remission. I was so close. I had a scan before I left and my dad organized for the next one to be two weeks after I arrived home. I didn’t have any sense of anything being off. So I had my scan and everything was fine until I went to my next appointment for the results. I sat down and she said, “Oh…you’re by yourself.” Immediately I knew something was up. My stomach dropped. She told me they’d found two nodules—they didn’t call them tumors yet because they didn’t know what they were. Bottom left, right lung, and too small to biopsy. They were 6mm both ways.
And at this point what is the likelihood it’s melanoma again?
What else could it be?
Maybe an infection.
I did consider it could be something that simple. But then, again, I had that gut feeling. I was like, “How can this be happening again?” I was furious. I was so mad at myself to the point I was crying in fits of anger. Everything had settled, and now the rug was being pulled out from under me. I left the office and I called my dad and told him I couldn’t drive myself home. He asked me very calmly to explain what the doctor had said. I also rang my mum.
The plan was to get a biopsy of the impossible-things-to-biopsy. So we spent two and a half weeks trying to find a doctor who was willing to stick a needle in my back to try to get into my lung to biopsy these two nodules. And as time went on it was proving less likely that someone would be willing to do it. But one doctor suggested we check a lymph node. Because if it’s in the lymph node that would mean that’s where it came from, and that it is cancer and not something else. So we found a doctor to do that. And then I got told that, yes, it was melanoma. It had officially come back, and this time it was in my lungs. That was Friday, May 14, 2018.
I was so mad at the world, I was mad at everything. It was a different type of reaction this time, it wasn’t fright, it was rage. I had finally gotten a glimpse of what my life could be like and then it was taken away. This time it was so much more real because nobody wants to be told they have cancer in an organ. I automatically got referred to a different doctor who deals with melanoma in organs because my original doctor was a specialist in the skin. So we met with him and he said we needed to do scans to check sizes, and also to talk about treatment options.
I called Alexander crying at 3 am his time and told him it was back. Then I said, “I can’t do this to you, I love you but I’m ending this now.” And he said, “…No.” [Laughs.] I didn’t speak to him for four days after that. I couldn’t think of words. But once we figured out that immunotherapy was my only option for treatment I finally picked up the phone and told him what was going on. He had just gotten a job and he immediately quit. I didn’t want to have to say I needed him, but I swallowed my pride and told him, and so he flew to Australia.
And within that time, those three days, my mum asked the doctors about my chances of having babies after treatment. They told us there wasn’t enough literature to say whether it would impact my fertility or not. So my mum said she wanted me to have IVF. And I was sitting there thinking, “I’m not even thinking about this.” I went to an IVF doctor that day and they gave me a bag of drugs to take home, like here are your injections. I started on them that day. It was torture—I was uncomfortable, I had mood swings, there was fainting, and just the pain of what my body was going through… but it was successful. They took quite a few eggs and that was dealt with.
But while I was doing that I had more CT scans and my tumors had grown from 6mm to 2cm which was considered aggressive. Because it was aggressive they had to change my treatment. I couldn’t go on the protocol with an 80% success rate (Keytruda), I now had to go on a different one which was a combination of drugs with a 50% success rate. We wouldn’t know if it had worked until three months later. They told me I could have a myriad of side effects, like x, y, z can go wrong. And the cancer could grow or shrink during the process, which is why they can’t know for three months if it has worked. But I had no choice. They needed to handle it and they needed to handle it now.
My oncology nurse came in and I asked all the hard questions. My mum and dad and Alexander didn’t want to hear but I wanted to know: what’s the success rate, what’s the associated life expectancy, who of your patients have actually succeeded. She told me only three had but she didn’t tell me out of how many. And they told me that if it doesn’t work my life expectancy is probably not going to be high.
We started the injections two days later so I still had all the IVF hormones in me. Walking into that chemo room was horrible. It’s a room full of old leather chairs with a million IVs everywhere, nursing running around and people who are well over the age of 60 for the most part, sitting in those chairs. I am a young woman who has barely lived her life. I had my first infusion, and it was fine. You don’t feel anything when you get the medicine injected but it took four hours. They read me the list of side effects to look out for and said if any of them presented themselves I had to go to the hospital. And of course, three days later, a lymph node in my neck blew up to the size of a balloon at 5:30 am. My immune system was attacking itself too much. I went straight to the hospital.
Within the space of two weeks, I got hepatitis and my liver failed. Then my lung collapsed. Every day something new had gone wrong. After two weeks I just had to get out. I was fed up. I begged my oncologist to let me go, and when I did I had three giant Ziploc bags of medication. Once I was home I finally started to feel normal but now I was putting on weight from the steroids.
Then my friends started a GoFundMe because I couldn’t work, and now Alexander needed to fly home and then back. They didn’t tell me about it. They kept asking me if they could do it and I kept saying no but finally, I gave in. That night was overwhelming because in the space of 24 hours they’d raised over $10,000 and the support from people I hadn’t seen for so long was touching. To this day I am still overwhelmed by the support and kindness of people. I was inundated with messages. It was nice to know there were people out there who still cared but then there were the people who were my friends who literally said nothing and that was hard. Some girls had been friends with me through the first time and then all of a sudden with this happening it was like they thought, I’m just not going to bother. I was really upset about that.
This time it was different because it was a lot more severe. I was having very intense conversations about things like life expectancy, and whether treatment would work. I wasn’t sure if it was going to pop up again somewhere else because it was already in my lungs. But then one day I lost my voice. I woke up and couldn’t speak and obviously that’s not a good thing, so they had to scan me to check if the pneumonia was back. After that they called me to say a) you don’t have pneumonia and b) everything is shrinking. And I had only had one dose. So, the sense of relief, I can’t even explain it. When I found out it had worked I felt like I could breathe again, like I had time. Of course, I haven’t crossed that finish line but I am on my way there. The next thing was to see if they could take away one of the drugs I was on to cut down on side effects. Turns out I am still responsive on the one.
To this day I still have cancer in my lungs but the thing is, if you look at me you don’t know. This is a big thing for me—please always treat people with kindness because you don’t know what’s going on with them. I look healthy but I’m not. I still have two years of treatment and that’s non-negotiable. Every two weeks I get injected, now from home. As soon as I come off this treatment the cancer could come back again, that’s a very likely thing. I’m choosing not to think about that at the moment, but as of right now two of the tumors are non-measurable and the lymph node is still enlarged but getting smaller. It’s working and I’m grateful. But I’m not going to sugarcoat the fact it’s been hell.
Sometimes I look down at my leg and I think, was that all worth it? I went through all of that and I still got it again four years later. Once I sit with that, I get overwhelmed with emotion. It just goes to show that no matter whether the statistics are in your favor or not, nothing is guaranteed.
What do you want to tell people about melanoma?
Scrap the thinking that it’s just about skin. People need to understand melanoma is not just about sunscreen and skin checks. Of course, that is a huge part of it but it is more than that. You have to be aware of your body. It is your number one priority. You’re not invincible. Saying, “I don’t have moles, I’m not fair-skinned or I don’t have red hair”, that doesn’t mean you can’t get melanoma. Yes, it can make it more likely to happen, but you’re not safe just because you don’t fit that mold.
What would you say to someone who says they don’t like sunscreen or doesn’t have time to get a skin check?
Can I call them an idiot? [Laughs.] I would say, would you do that to your kid? Would you let them go out there in the sun with their brand-new skin and not take care of them? You wouldn’t.
How do you feel about your toe now?
It’s currently sitting in a lab somewhere. [Laughs.] I have days where I don’t care and it doesn’t bother me, but then there are the days I see beautiful shoes I can’t wear because of my lymphedema and it hurts. Most often I’m reminded about it in summer because I can’t walk along the beach without shoes on. If there is glass or something in the sand and I cut the bottom of my leg or foot I automatically have to go to the hospital. I’ve come to accept it, but some days are better than others.
No one is a fortress all the time but you are very strong—you have a whole world on your shoulders and you carry it with grace. Is this your personality or a conscious decision?
I would say it’s both. My parents split when I was young so I learned how to build resilience then. Mental health is important, it’s crucial I have a positive headspace because that is the foundation for everything. I treat myself graciously. I like to draw and paint and read and write, and I value “me” time. The time where I’m not inundated with the problems I have. I’ve been taught meditation, and exercise is also great.