Life Uncut - 'I Couldn't Save Her, But She Saved Me' - Fighting Leukaemia Uncut with Nikiya Love

Episode Date: March 18, 2024

Today's episode felt like such a privilege. We finally got to meet lifer Nikiya Love in person!You may have gotten to know Nikiya in the life uncut discussion group. Over the years Nikiya has brought us along for the ride throughout her fertility journey and her leukaemia diagnosis while she was pregnant with her beautiful daughter Lexi.  In this chat we speak about: -Nikiya's IVF process-How her leukaemia diagnosis happened-Losing her beautiful daughter Lexi-What fertility looks like after chemo-The stem cells from a stranger that saved her life-How important blood donations are Nikiya has a gentle strength and a grasp of what's truly important in life. This chat has left us feeling forever changed.  You can follow Nikiya's journey on instagram here - Nikiya's Instagram If you'd like to join the facebook group where we first met Nikiya, you can do so here! LIFE UNCUT DISCUSSION GROUP Sign up to donate blood - Life blood Register for the cheek swab test to see if you could be a stem cell donor match -Strength to give The life blood teams that you can join are called:'Hannah's Bloody Heroes' or 'The Love Squad'.  You can also find out more at Leukaemia Foundation's World's Greatest Shave   You can watch us on Youtube If you have an question please send it on it to life uncut podcast on Instagram Join us on tiktok Tell your mum, tell your dad, tell your dog, tell your friend and share the love because WE LOVE LOVE! xxSee omnystudio.com/listener for privacy information.

Life Uncut acknowledges the traditional custodians of country whose lands were never ceded. We pay our respects to their elders past and present. Always was, always will be Aboriginal land. This episode was recorded on Darug Walamutta land. Hi guys and welcome back to another episode of Life Uncut. I'm Laura. I'm Brittany. I feel genuinely so privileged to bring you guys this episode today. We are talking to one of our very own.

We're speaking to a lifer. Her name is Nakia Love. And now if you are part of our Life Uncut discussion group and you've been in there for a little while, you may have seen Nakia's name and face. You definitely would have seen her. A beautiful face pop up in the feed. And she has over the past year and a half been so open and kind in sharing her story around leukemia and her leukemia diagnosis.

Nakia, in this interview, she shared so much and we covered so many stories from, we talked about her diagnosis of leukemia, her fertility, we talked about miscarriage and we also talked about the importance of giving blood and how life-saving, life-changing and what that actually meant to her. And it's so interesting, Laura,

because the part of me that feels ashamed to say this, But it's one thing to grow up learning and hearing that, you know, donate blood to save a life. One blood donation saves a life. But it's another thing to sit down and speak to somebody so intimately whose life was literally saved because of these donations. And we get into it, but you can donate so many different things. Obviously, the stem cells and there's the bone marrow and there's blood and there's platelets and there's so many different aspects. but when you hear Nakia say, I'm only here because one person overseas donated to me anonymously, that hits different. Yeah. And I genuinely can't overstate this enough.

We have had over the last four and a half years of doing this podcast, Brit, like we've had so many incredible people that we've had the absolute privilege of interviewing. I have never been brought to tears as many times as what I was by Nakia. And so many of you guys have incredible stories. You have lived so many different lives and within the Facebook discussion group you have shared different parts of that and we've interviewed other people from the community in the past but Nakia's story is one that stood out and even a year and a half ago when we first sort of started diving into listener lives it was a story that I wanted to talk about. It was a conversation I wanted to cover and at the time Nakia was still going through treatment but now

she's in remission she's in an incredible place but what she has been through in the last year and a half i don't think that there is going to be a single person who listens to this episode and leaves without being as moved as what we were and please if you take anything from this episode go and donate blood we have all and are all doing it now off the back of this but like you said brit there's this conversation around like donate blood it'll save a life but when it comes from a marketing from a blood donation bank verse coming from a person who has lived it and the only reason why they're sitting in that chair right now is because of every single person who takes the time and energy out of their day to go and do that it hits completely different this chat

is honestly so powerful and we're so happy to be able to give Nikia the space to tell her story today everyone I am so excited for today's episode because it is one that I have been wanting to do for over a year and I am so grateful that after a year of us from the very first time we had our first conversation around having Nakia on. She's sitting here in the studio with us. But Nakia was diagnosed with leukemia and has a truly remarkable story. And her resilience is something that I think is incredibly admirable. We're so happy to have you here today. Thank you so much for having me. It means the world. Well, being a true lifer, you know that we don't start without an accidentally unfiltered. You don't get away with it either. Do you have one? I have a couple. Fucking give us

the worst one I was thinking this on the drive up I was like god what am I gonna say I have two but I'm gonna share the most recent one it just seems fitting for this story but um I've been through a stem cell transplant and I obviously had no hair for quite some time during my treatment and I never fell into the whole wig thing like it just wasn't something that I would I embraced I was like I'm bald whatever let's just own it anyway this one particular night it was my first outing in like over two years and it was my girlfriend's 40th and I was like I'm gonna just have some fun and I'm gonna order a ten dollar pink wig off Amazon and I'm gonna wear it to the party so I did anyway I also had my first bottle of champagne in over like probably

close to two years and I was like oh I'm just gonna have a couple of glasses and then I'm going to drive home anyway I was uh very naive to what I had been through medically and how much my body couldn't tolerate the alcohol and I had two glasses of champagne only over like a course of four hours standing up talking to my girlfriends having the best night of my life and then suddenly out of nowhere I was like god I'm getting really hot and I walked over to the kitchen bench and I put my hands down on the table and I was like god I'm really hot my friend came over and she said are you okay I said I think I'm gonna pass out she said what do you mean I said I'm just I think I'm gonna pass out and in like a split second I fainted and I woke up over like I had been dragged

across the floor by my friend who I fell back into his arms luckily he was standing there dragged me across the floor put me into a beanbag I woke up my leather jacket was with one of my girlfriends my pink wig was with one of my other girlfriends I had like a bottle of champagne like that had spilled all over the floor. Hang on, did you faint or did you drink too much? Because they're two different things. Right? No, I actually fainted and I went to my hematologist the next day

for a clinic follow-up and I said, yeah, so I had a couple of glasses of champagne last night and I fainted and she was like, Nikki, pre-transplant, probably could have handled two glasses of champagne. Nikki, post-transplant, not the wisest idea. Also, I'm just thinking about your poor friends. They're like, finally, you're getting better. and they're like, fuck, what's happened?

My poor husband was at the party as well and he was like, all right, we're just going to call an Uber. Or an ambulance. I would have taken you to the hospital. If I knew your friend and you had been through what you'd been through and then you passed out at me, you're straight to the hospital. But you just mentioned your husband, Dave. You guys have been together for 16 years, which is such a long time.

Married for eight? Married for eight. How did you guys meet? School. Oh, cute. We're not high school squeethards. Squeethards? we didn't squeak well i think we're not we're not high school sweethearts we knew each other

in school but uh we actually started dating i was in year 12 and he was completing his fourth year of his electrical apprenticeship i mean and then i was squeaking at first that's beautiful yeah did you ever get the seven year itch or did that just not exist it didn't exist i was in treatment all as in for marriage no because i was in treatment and i was just so grateful that he was by my side when I first heard your story and I want to read something I was just trying to look it up but you mentioned before the first time you posted not the first time you posted in the group but the first time you posted a photo of yourself without having any hair was the picture that you put into the laugh and cut discussion group and it was such a beautiful post

because it wasn't about what you were going through it was about and I think so many people attach we attach beauty to having hair we attach identity to having hair and it was more around your acceptance but part of it was an Audrey Hepburn quote and I wanted to read this you wrote for beautiful eyes look for the good in others for beautiful lips speak only words of kindness and for poise walk with the knowledge that you are never alone what was happening to you at that point in time and why was it that that is where you wanted to share what it was that you're going through uh well I guess if we backstep a little bit we'd obviously during my diagnosis I'd also lost a child so I was 16 and a half weeks pregnant and I'm comfortable to share this today with

you ladies and I would like to also thank you Laura because I had experienced a missed miscarriage at 11 weeks back in 2020 and I felt so alone yeah and it was your podcast and the likes of other women who were brave enough to share their story. I actually listened recently to the Chloe Chapman podcast and she was brave and she shared something on her social media when we were in the COVID lockdown and it was exactly, like it was the timeframe that I'd had my first miscarriage.

So I was looking to people like yourself and people like Chloe and other women who were vulnerable enough to share their story and I thought I cannot be the only one going through this. And I'm not the only one going through this. You hear those crazy stats and you're like one in five. You're like where is the one? Where is she? I'm like where are these women and where am I?

Like I'm a girl's girl. Like I've got such a strong love for women and my girlfriends and my mum and my nan, everybody around me, my sister. and I'm like no one's saying anything like no where like as in who are no one's talking where is these four people like it's one in four women or one in five women did you find yourself as well the minute that you put your hand up and say this has happened to me the village comes out of the woodworks it's like the amount of people who then say me too even my mom I knew my mom had a miscarriage but I didn't know how many she had had me too and she was like like and it just never was

talked about no so that was the start of it and I think and then we went into COVID and obviously that was just a harrowing time for everybody and I'm not you know everyone's got a story through COVID but what happened was we that solidified our want of a child and I was diagnosed with PCOS like when I was younger yeah so I was able to see a fertility specialist quite quickly I think in Australia when you're 30 years old they have this rule around like you wait 12 months of trying to conceive naturally and then we go to the you know fertility specialist and so Nakia why did you go straight to a fertility specialist had you been trying after your miscarriage had you been trying for a period of time and it didn't happen or did you just know that it wasn't going to be

easy did you already feel like that pregnancy was lucky pretty yeah absolutely right yeah so So my fertility specialist had said to me like okay you have PCOS it might be hard for you to conceive let's like when that time comes come back and see us. So after that first miscarriage which was a natural conception we went to the GP and I said you know we are trying again and it's not it's not coming to fruition and they referred me to the fertility specialist. Now again you know all of the investigations under the sun they as they do with IVF obviously they my IVF specialist had a quite a holistic approach he wanted me to experience natural conception or as natural as possible if we could so we did all of those which is also frustrating because you're like I wanted

to be natural too but let's call a spade a spade right like yeah and you're like I'm here let's not waste more time right and it's COVID like let's not forget that we're doing this in isolation like gee whiz anyway yeah you're like we're doing the sex like we're at home with nothing else to do we've been doing it it's yeah so we ended up after it was close to 12 months of naturally and like and furthering like medications and all that stuff we went down the IVF route and I did my first round of stims and with polycystic ovarian syndrome PCOS I was I was uh able to retrieve 27 eggs that's amazing that would have been giant it would have been really reassuring at the time right reassuring but what happened with that is they as we now learn it's quality over quantity

and I having had um so many extracted they said we can't do a fresh transfer this is only going to be alive. So this won't be a live transfer. This will only be a frozen. We need your body to calm down. We need to get your hormones back to baseline. You know, you're at high risk of ovarian hyperstimulation, which I knew nothing about. And then spent a week at home. And this is in September of 2021. And I ended up with very severe ovarian hyperstimulation that put me into hospital for a week what does that mean for anyone who doesn't know it means that you have so much fluid in your abdomen and your ovaries that it eventually for my situation it actually ended up going to my lungs and I couldn't breathe properly so I couldn't get out of bed I couldn't walk I

couldn't do anything and I did end up going to the hospital and because of the time that it was within the medical system oh god I was not able to breathe and they said oh we're gonna admit you to a COVID ward and I'm like no you're not this isn't COVID my specialist thankfully he was a wonderful man he's a wonderful man and he was like this isn't COVID we're getting her in like she's we know what's going on here like yeah yeah and thankfully yeah but yes a week in hospital and I thought I was gonna die and I was on fluid and IV and so 27 eggs collected we got 16 embryos fertilized on the first day. You're like, great, this is amazing. And then what followed from that was me in hospital in COVID. So my husband wasn't able to come in, getting my specialist come in

to say, we're going to give you the call at three days. We're going to give you the call at five days. We're going to tell you how this is progressing. And they deteriorate every day. And they deteriorate every day. And he came in on day five and he looked at me and he said, they're all scrambled we've got three that we're watching but they're all fragmented they've all fallen apart we've got three we'll see what they do do they know why uh just again quality just what happens it's just what happens and i think with pcos you're probably less likely to have good ones you know you might have a lot but they might not be the greatest yeah day five we got one and my specialist walked in and i said one's better than none and he's like

yeah but you're here and you're going through all of this and i said it doesn't matter you know i'll take it i'll take it and then on day six he came back and he said you wouldn't believe it he said we've got another one and i was like oh my god we've got two oh my god he like raced up to the finish line yeah i was like we've got two anyway so we froze both of those in november after i got out hospital everything settled down I was like let's do the first transfer so we we did that we went with the better quality one and it came back and it didn't even take it was a negative pregnancy straight off the bat January rocked around and I was you know we're kind of planning our year out and I said let's start with a transfer like we've got one left let's start

with that and we'll see what happens because who knows it might work it might not work but either way we can move on and plan what we do next like think of our next step right so in February of 2022 we did the second transfer and it worked I was pregnant with a little girl life was great I mean, I think after a miscarriage, you're instantly just. Yeah, you're so worried. You're so worried. Yeah. You know, I think.

Relax and enjoy it. You can never relax. Yeah, you're always anxious. I would try, like, I'm pregnant today, you know, like that's what I have to focus on. Today I'm pregnant. We landed in the second trimester. I'd just gone for a fabulous holiday to Port Stephens with my sister

and my niece and my nephew, brother-in-law, my husband and I for Mother's Day long weekend. And you also, at that point, you just, as you take over into the second trimester, your brain goes, I'm a bit safer now. Yeah. I can let myself enjoy it a little bit more. Yep. And I did.

And I really did. I, I lent into that the second, the first trimester. I didn't second trimester. I was like, okay, I've started here. I'm here. I'm putting my nursery together. Like I'm starting to think about what, you know, what my nursery is going to look like. It was mother's day.

We were excited. we you know we found out the gender over the Easter long weekend it was all really exciting and I was working I sailed through that first trimester too and I thought you know like this is so good like finally it's my turn like to yeah to have some good in this and yeah it just felt amazing was doing Pilates was doing a course at uni was working like just like just loving life and I went away had that long weekend in Port Stephens came home and then within two weeks I just started to feel so tired and not tired like oh I just didn't have good sleep last night I'm talking like I'm going to bed and I'm sleeping for three hours in the afternoon like extreme

and I'm waking up and I'm going back to bed again and I'm sleeping another eight like this isn't normal normal and I'd go for a little walk and I'd get to the I'd walk my dog and I'd be like at the end of the beach and I'd be like really out of breath why am I out of breath like like and you'd never had symptoms like this beforehand no just it kind of came out of nowhere no came out of nowhere it just started and I remember I think it was about two weeks after that weekend away and I was in the kitchen and I was washing dishes and I just said to Dave I was like I've got to go sit down on the couch like I'm like I'm really dizzy and he was like yeah okay but and he was great like he was super validating and he was like you know you're pregnant but this is the

problem I was telling my sister's a nurse as well and so I was telling people that I was feeling this way but everyone's like yeah but you're pregnant yeah fatigue is part of it and I'm like yeah but I'm pregnant and I said and I'm feeling this in my second trimester I said this is the time where everybody tells you you should be thriving I said I've never felt this bad before I was 16 and a half nearly 17 at this point and he was like look something's obviously up like this isn't normal like just tomorrow go to your GP or give someone a call so I called my I was a high-risk pregnancy because it was an IVF pregnancy so they I called my team they said well, you're before 20 weeks. So let's go with the GP. And then if not the GP, we'll go to ED.

So I called my GP and just by chance, she wasn't working that day. I got through to another woman at another GP at the clinic. And she said, look, I'm just reading over your records. I think we should get you to ED. So fast forward to ED. I go in, they do the blood tests. They check my heart like all the obs and they're like oh yeah look your white blood cell count slightly elevated but everything else looks really normal and white blood cells can go up in pregnancy like you're fighting an infection so you're fighting an infection like it's no you know that's no biggie no biggie but because I was having stomach cramping and they had continued on they were like we want to ensure that you're not having contractions or that you're not having a like a late miscarriage

or that something else isn't happening so they took me into the sonographer and she scanned and she said what centile are you and I said oh like she's small I know she was measuring small like they'd always told me she was five days behind I was like she's little but like she's always been progressing and she's on track and it's all fine she just looked at me and she was like okay but what centile and I said well I don't really know what centile they haven't mentioned a percentile but I know she's small is she measuring small and she said okay anyway I started having these like these pains on the screen and she said are you having those like are you feeling that now and I said yeah I am she said you're having Braxton Hicks I can see them I said I'm 16 and a

half weeks pregnant why am I having Braxton Hicks this isn't normal so I think because I was a high risk pregnancy they wanted they would do they were being so vigilant and they put me into a bed and they said we're going to keep you here overnight and we're also going to have the head of OB like come down and review you so they did at 2am in the morning and they they were like you're not dilated you're not bleeding you're not losing like there's nothing to indicate that you're losing this child but we just don't know what's going on so we're going to admit you to the maternity ward so I went up there in the morning they walked in and they said we can't treat you here you're gonna have to go to the royal hospital for women in sydney for further testing and i said

okay like but again still no answers well at this point too you just like you don't think anything's really you know something's not right yeah but no one's really telling you anything and someone says go to another hospital you don't really question it you're like okay they must not have room for me here or yeah you don't overly think it because i guess you trust those people you do you do trust those people so i was like okay we're just gonna you know they're just covering all bases they're doing their job and then he said we're just going to run a couple more scans we're going to send you back down to radiography and we're going to do a spleen check and and some ovaries and I'm like okay this is weird like why are we not talking about the baby anymore why are we talking

about me while I was down there a hematologist called and he said um oh I'm just in the maternity ward to see you and I said oh I'm down in radiology if you want to come down he said oh okay i'll pop down so he walked and walked in and i was having the scan at the time and i'm on the bed and dave's there and i'm like oh yeah just like being so naive and he's like to the sonographer can we just add on a liver as well as the spleen something's really off he's like i'll see you back in your room anyway they reporters wheeled me back to my maternity like room and the hematologist was standing there at the door and i was like hematologists don't like especially they're not waiting around they're not waiting for anyone they're busy people and he said um the bloods

that came in from ed yesterday they've shown something a little sinister we're not 100 sure we're going to perform a few extra labs but that's why we haven't sent you home yet and i said sinister like what at this point i was so over it and i was so frustrated because nobody was giving me any answers and I looked at him and I said if you know something tell me please I beg you to tell me something I'm so sick of people not telling me what's going on and he said we're looking for leukemia anyway he walked out of the room and I turned to my husband and I said typical specialist think about worst case scenario but that's what you would think right and you're like I don't get leukemia like that doesn't happen to me right worst case scenario like also genuinely

like I and this sounds so ignorant but I did not realize that leukemia was something that affects adults in this I always thought it was like a childhood illness and I know that that for a lot of people are gonna be like oh that's ignorant but I just I just didn't I've always thought it affects children more than yeah it's not ignorant and so I guess like part of you would be like surely not no right when you say okay well we're just going to rule these things out what happens they do a blood test three o'clock in the afternoon the same specialist who was a register at the time with and my then specialist who became my specialist came into the room the maternity ward sat me down and said i'm not sure what he's like what's been shared with you already

but we're just confirming that and i said well he said he mentioned that you're looking for something sinister and it might be leukaemia and she said I'm really sorry to inform you but yes you have leukaemia it was three o'clock on a Friday and I'll never forget it wow what did you think in that moment shock and I turned and I said she said now it's curable I just want you to know that she said and we've also had women who have been pregnant who have gone through and successfully delivered a child she said but we need to start urgently this is acute we don't have time because you often hear of those stories of women that are pregnant that find a diagnosis like this that have the choice like do you want to put off treatment for a little while to deliver

the baby and risk that yeah but it sounds like you just it was you start tomorrow she said this is this is aggressive you've had this maybe for the last two weeks and with like on your blood she said everything else is fine but she said like we can't wait do you know how it starts like how is it that you can just get leukemia right no there's bad luck it's cancer it's bad luck yeah like shit happens and so what was the treatment that they wanted you to start on straight away was like a radiation yeah so straight away was you're pregnant so we can treat you here but we're going to send you to royal like to the prince of wales hospital and the reason for that is it's next door to the royal women's hospital and they said you're going to be

in care for the baby but we're also going to be caring for you so you're going to be working alongside the hematology and oncology department and then you're going to be going to the maternal fetal medicine department at the royal hospital for women so they said go home pack your things get your you know notify your family tell people you want to tell and on Sunday night I had a bed in Sydney and they would just porter me from the two hospitals because they were right next door and I would have scans for the pregnancy and then I'd have a bone marrow biopsy for me and then I had a lumbar puncture straight away they did spinal chemotherapy because I also had a cell that had flagged on my central nervous system

that they thought maybe it had entered into there and my first bag of platelets because they were dropping. Everything was happening very, very quickly. Look, I haven't been, I guess I've been terrified to share this part of the story and I've never shared it publicly. I've also only ever shared it with a very small group of friends and family members.

So this is going to be a huge maybe shock to everybody. I don't know. But we had to do a medical termination. So it was a termination for medical reasons. I'm sorry. I'm so sorry. Our daughter was dying inside of me. Yeah.

She stopped growing. I was 18 weeks gestation and she was the size of 15. and we had to do a medical termination for her because they said, if you don't, then you will both die. Yeah. Nakia, I'm so sorry. Yeah. That's really.

It wasn't a choice and I know and this is a topic that is not spoken about and that is why I'm sitting here so bravely and terrified to share but it's not spoken about and other women go through this and other women have been through this and I know that because I have spoken to these women and they have shared that with me and it's not fair if we want to say that but life's not fair and life is hard and I am here today because of her and I'm here today because she saved my life.

But it's also not a choice. It's not a choice. This is not getting to a point in a medical diagnosis where you go, oh, I'll make a decision. No. That choice is taken away from you. Yeah, there was no choice in that at all. And there is not in the slightest.

Like they said to me, they're like, the chances of you surviving and her surviving, like the odds were like harrowing. I did read something really beautiful that you wrote and I don't want to say it, you can repeat it, but just what you said just about how you truly believe that she was put here to save you. I do.

I think her time on earth yeah I think her time on earth was so so empowering and I think that what she did in 18 weeks of her life was more than some do in an entire lifetime and she saved me I couldn't save her but she saved me and I remember sitting in that appointment like when they told me when they first told me and I said like I'm strong my baby's strong we'll get through this I believed that wholeheartedly I believed that but when you're sitting there and you're having those scans so I guess the bigger picture of it all is that I couldn't have delivered because I was too early in my second trimester I couldn't have made it to a safe because originally they were hoping to get me to 25 weeks right and it's like we can deliver it 25 weeks odds aren't great

but we can also do it we're equipped to do that I was too early I had to start treatment the treatment was happening I didn't know this about leukemia but you end up having so many blood transfusions and if you go into a spontaneous labor in the middle of treatment you bleed to death there's not enough transfusions that they can give you to clot your blood you would both die what was Dave's reaction what was your husband's reaction at this point we have to save you yeah i can't lose you both well there's no other outcome is there no it's not even like let's see if we can save you both no if that was an option maybe it'd be a more difficult decision but it was a hundred percent there's yeah if you don't do this you will die

yeah did he have the role of trying to convince you at that point you know he was like this is you your body i am here wholeheartedly for whatever you need to do to survive i am not losing the both of you what a good man now the strength of him is incredible how has it changed your relationship what has happened with the two of you since this has all happened well i'm going to say the word galvanized because laura always says that if you're playing life uncut bingo everybody take a drink i know it galvanized us we should be laughing at that we grew closer together but i think ivf did that and a lot of people talk about this and i was like everyone's like oh you're so strong and you're so this and i'll be like

yeah but anyone that's gone through ivs is also like they know that anything in the world that is out of your control but i think you underestimate how for some people it rips them apart i mean it can do one of two things for couples that are not good communicators or they're not able to support each other in the way that emotionally mentally is required it does the exact opposite and so I don't think ever like never devalue how amazing it is when something that's a true trauma brings two people together yeah because that's that's like the biggest test in life during a relationship yeah I mean look therapy yeah let's be real it's always there therapy is always there I've used it yeah I'd be kidding myself if I'm lying to everybody

if I said I hadn't worked through a lot of therapy. So I imagine at this time you've just lost your daughter Lexi but you don't even really have time to grieve because you need to continue on with your treatment to save your life. Yeah. So was there any process of saying goodbye and mourning that or was it just let's charge on and then I'll deal with it later on? It was grief in correlation.

It was the two things at once. We had two days between treatment and losing her to go home before they then started more of my chemotherapy and I was in hospital for 21 days at a time because you're so neutropenic during leukemia treatment that you have no white blood cells you're like wrapped in a bubble so you're wrapped in a bubble the whole ward was in lockdown yeah even though COVID had finished and that's how you live and I was in hospital for over 150 days in total. I had five rounds of chemotherapy, two rounds of an immunotherapy, which was a very different experience on immunotherapy versus chemo, but, and then I also went on in for a

bone marrow transplant. And in amongst all of that, which sounds wild, which happened from May to February of last year, I found out my sister wasn't a donor from the stem cell registry that my donor was coming from well he himself wasn't but his stem cells were coming from germany wow yeah so i have a german donor when you say that you mean she wasn't a match she wasn't a match yeah yeah only one in four so it's that rare in australia here that you have to find them wait for an overseas match yeah because there's not enough people donating yeah there's not enough people on the bone marrow donor that's wild yeah and you have to be between the ages of 18 and 35 in australia to be on the registry so does that mean i can't we can't donate so you can

donate your blood your plasma your like things like that but the bone marrow donor registry you have to be 18 to 35 to sign up and then you remain on the donor registry until you're 60 but they will use a younger donor because the successes of the patient outcome is much greater i didn't know that there was a time i don't think anyone knows there's a time limitation on this so So your donor, your stem cells come from Germany. Yep, it's a 30-year-old male from Germany. Big shout out. Big shout out.

Because he saved your life. Unidentified to me, but yeah, he's over there somewhere. And then what happens? What's the process from then you have this life-saving stem cells? Yep. Once they do that transfer, is there a period of grace where it's like, let's see if you're in remission? What's the percentage of guarantee that that works?

So I'm in remission. I was in remission. Yay! yeah thank you I was in remission after my first cycle of chemotherapy I was very fortunate chemo responded very I responded very well to chemotherapy so I actually went into remission after my first 21 day cycle I had to continue though that's the thing that people don't know about leukemia is although I was in remission it could come back so I had to continue my protocols correct which was five cycles until I had the stem cells right so I went into remission

and then I went into the stem cell transplant and and again back to the whole grieving thing like I'm in hospital 21 days a time my husband had full-time access to come and see me but like only for the first cycle then after that it just went back to normal hospital stuff like visiting hours we were isolated in the third cycle of chemotherapy they said to me look like I am grieving like I can't tell you how much I am grieving my child and my daughter Lexi but they were like this is your chance you're about to go in for a stem cell transplant if you want any chance of having future children now is the time to do it to do more embryos to do more embryos so they said you're in remission we have enough time between the two cycles because

normally you'd go only seven to ten days out as an outpatient before you'd go back in for your next and they said let's go so we can extend your time out of hospital we can do four three to four weeks here and I said well let's do it let's what like this is the only chance we're ever going to have like this it feels so messed up this is so ridiculous but let's just do it now or never right like you take the shots so we did and we got one and well sorry we got one um follicle grow and I woke up from that and said is it is there anything there and they said yeah there was an egg inside and I was like oh my god like maybe this is the one like they say you only need one you know anyway an hour later they came and informed us that that was unsuccessful and had

been too damaged by the chemotherapy so we have no like i've got no eggs i'm in menopause right now i yeah i i'm in full-blown menopause hrt and all and is that brought on by and it's brought on by treatment it's brought on by this i had for my stem cell transplant i had chemotherapy which was like the highest doses of chemos that they can give you plus total body radiation for three days twice a day so my my body's fried my poor little ovaries are all fried how do you how do you deal with this when this is something that you so deeply wanted what do you like where are you and dave at how do those conversations go down and what do you do to preserve your just your mental your well-being around the conversations of fertility yeah it kind of in

one way knowing that we didn't get anything after that second collection during treatment and again I've actually not shared that publicly either we felt as though that was we could put a close on that chapter yeah and I think you know there's other ways and I think women these days discuss this with less judgment but we have the option to donate eggs we have the option to get a donor egg or if I'm even ever in a position to carry right now I wouldn't even be able to do that because I am on medication still for my treatment so whilst ever I'm on that that's not even an option to me but in future maybe years down the track five years is can five years post stem cell transplant is when I'll be cured is what they call cured uh chances of relapse do occur during that

time lots of people do go and have a second bone marrow transplant but I just choose to think that I will be one of the lucky ones I can't imagine I have a daughter that's the other thing I think is important to remember like i have a daughter she's not here but i have a daughter yeah i am a mom absolutely and she's not here with us but that doesn't change the fact that i have so much love for her and that i will forever you know be grateful be grateful for her nikki is something you said before we were properly we're recording you were talking about the perspective that it's given you that your appreciation for life your appreciation for time these lessons that you're Like some people don't ever learn them.

They don't even ever get to the point where they're able to have a deep appreciation for just your own mortality. Where has that left you now in terms of how you view your life, what you want from your life, what you want from your relationships? Yeah. I think M. Kerry was actually a book I read during my treatment and she has a necklace or something even. But in her book there was a line that said,

if you can, you must. Right? It's beautiful. It's such a good one. And then Elodie Pullen, again, someone who's just been through such trauma she has another beautiful one and it's like if not with you then for you right like these things matter and these things are like these people have been through trauma themselves and they get it and it's not until you're in a position like

this where you find strength that you just did not even know was humanly possible and also all the things that you think you want and that you think are the most important thing like priority shift it's hard to even imagine but the the gratitude that comes from being like oh we get another chance at just living life that may not have been there a year ago and I and I will live for her like I will stand here and be absolutely terrified or sit here and be absolutely terrified out of my you know pants but I but I will do that because I will do that for her and I want the world to know that she exists I want other women to know that I see them I want other women to know that they are not alone in anything that they're going through in life because my god I felt alone

I felt so alone and I wasn't you should feel so proud of yourself though I mean you've got me so many times I'm sorry don't don't you dare I remember and it's and it's what I went it said at the start I remember reading your post in the discussion group and it was how in a time when you were going through so much that you could still find so much positivity in wanting to help other people and that shines through in everything you say in the person that you are you should be so proud of yourself for that but also in the messaging now that you are advocating for this conversation around giving blood we don't hear it enough and I'm thinking about my memories of like the the campaigns around give blood it's life-saving they kind of come in and they in ebbs

and flows from like a marketing perspective from blood donor and blood drives but you never really hear it and how important it is on a personal human level how much that literally saved your life yeah can you talk us through why it is so important for people to give blood why it is so important especially from a certain age to even think about stem cells and and the different things that you can do to help people beyond yourself sure so i had over 55 blood products during my 150 days in treatment and i'm one girl yeah i'm one woman there are over 140 000 people living in australia right now with blood cancers and they need blood there's people in our discussion group who have it there's people there's other lifers who are dealing with this right now shout

out to han yeah yeah i see you i hear you i love you and yeah we we are going through it and we need blood and i'm one person and i had 55 blood products so i just want that to be put into perspective i think 34 of all blood products go to cancer patients and when you say 55 blood products if i went and donated blood is that one product is one donation one yep so we've got four components of our blood we've got white cells which you obviously can't donate we've got red blood cells we've got plasma and we've also got platelets and you can opt to donate platelets plasma or blood like red all blood hemoglobin or in correlation like cohesively is to sign up to the australian bone marrow donor registry 18 to 35 year olds it's an at-home free cheek swab kit

that you swipe your cheek and they get your dna or you can also do it the australian red cross a life blood center where they will take a collection of blood from you and your blood stem cells will be tested and put onto a registry and then if someone needs a stem cell transplant to save their life like me in terms of a long-term cure then you will go on to be contacted you can opt in or out there is no you know you're not committed to it just because you're on the registry contacted if you're a match contacted if you're a match and then it's a essentially a four-hour plasma like equivalent to a four-hour plasma donation where they collect the stem cells peripherally out of your arms and your blood and you return back to the gym the next day

and you literally just save someone and you just say someone's life it took me it took me 11 minutes to receive those stem cells but I was in hospital for over five weeks and then a hundred day isolation post that and 11 minutes later well no that like 11 minutes after yeah after an 11 minute transfusion yeah this is the thing people don't know like I never would have known that that was the thing I didn't know that you needed to be signed up to this before the age of 35 and it feels like such a waste it feels like such a because we had all these big ideas that we were going to go this week and sign up and do that and I didn't know that you had to be on a 35 I mean such an important thing if you are somebody who is under the age and you're able to i mean obviously

giving blood is one step of that and if you can do it consistently please but if that is something that you have the ability to sign up for and then you can make the decision if that opportunity comes to you i wonder why it hasn't or why it isn't more known like why isn't that just common knowledge i don't know that's why i'm here that's what i want the world to know about and yeah there is no age limit on blood and i think that's important to remember like you can donate blood i think up until the age of 75 and or you know something like that like and that is what we hope everybody who's listening to this yeah goes and does whether it's this week next week go in there this afternoon brit and i and the team we're all going to go in and and donate blood after this yeah but we

perfect month too it's it's world's greatest shave month so if i mean your foundation exactly greatest shave yeah leukemia foundation so not that you should need a month like we're going to encourage everybody to do it every month but maybe this is the time this is the kick that people need to be like yep it's the month this is the episode your story thank you we're all yeah we're having a our team day out we were gonna go we were gonna go to lunch and have drinks and we're like let's swap that our team day out now is gonna be blood donation just make sure you're hydrated beforehand we'll have water nikia thank you so much for everything you are honestly you're an incredible woman everything that you've been through everything that you've experienced we are

so grateful for you sharing your story with us we're so grateful for you being a part of the community and for how vulnerably you have been sharing throughout your journey as well it has made and will make a huge difference to so many women out there who have been in your space or something similar and just feel immensely alone thank you yeah i really hope so and yeah i mean I'm just like I said one small small town gal but I sure as hell yeah okay you two connect on a whole nother level but even just in addition to what Laura said even just it's not lost on us that you shared some things today that you haven't told anyone yeah so we feel really grateful that you feel like you can do that in this space yeah and the fact that you felt like you could live

your true life and tell your story in the life uncut discussion group yeah is what I think Laura and I speak for myself but it's what we're most proud of in is that that community yeah and the feedback I received like I said that was one of the most terrifying things I've ever hidden post on that story it's like where you post and throw your phone away and you're like so much love and support came through that page and I felt so safe and I think what you two and Keisha have created here is something that is breaking barriers of stigma around women's health and things that we go through fertility you know whatever that may be like mental health whatever but like all of these things it's you're breaking barriers and you're changing people's lives and as I said at

the beginning you guys being vulnerable and sharing your story so confidently it made me confident and brave enough to come on here today no stop this is all you this is nothing to do with us I mean thank you yeah so thank you if there's anything that you can take away from today's episode we so deeply want to encourage you to go and give blood to make that appointment and not just not just think about it or put in your calendar and never actually go and do it like please take this opportunity to make it a priority go and give blood yeah so I have a lifeblood team it's called the love squad my surname's love so we love that so the love squad you can go and join that team it just makes the world of difference and it means I get to see how many incredible

people are out there donating the other incredible one is my girlfriend Hannah who is currently going through her second stem cell transplant and she has just started a lifeblood team as well and it's called hannah's bloody heroes and i know it would mean the world to her if she saw those numbers increase so shout out to that and she's also been very vocal in the group around her experience and her diagnosis with leukemia she so generously shared some links which we're going to put all of them in the show notes for you guys if you want to go and sign up you can sign up to donate bone marrow with strength to give you can also donate blood at any lifeblood center and you can also donate to cancer council daffodil day appeal which all of that goes to helping buying flowers for

daffodils day and helps to raise money for research into new treatments and more clinical trials we're also going to pop a link to the facebook discussion group if you are not a part of that community these are the kind of conversations that are happening in there they are powerful they are funny they are wonderful there's all different kinds of conversations happening it's a really really special place so please go and become a part of that as well and that's it from us guys tell your mom tell your dad tell your dog tell your friends and share the love because we love love