Stacey Morrison talks to Chloe Irvine about life with breast cancer through Covid-19.
Breast cancer doesn’t wait for anything – not even a global pandemic. The effects and social restrictions of Covid-19 have put immense strain on women (and men) who are receiving treatment for breast cancer, and the pandemic has also caused delays in women getting diagnosed and access to treatment.
According to Breast Cancer Foundation NZ, during the Covid-19 lockdown restrictions around 400 women who would have received a breast cancer diagnosis missed out on getting mammograms or a referral from their GP. The foundation’s nurses have assisted women who are desperately worried about what this delay will mean for their survival.
So when I started thinking about how to assist this year’s Pink Ribbon Breakfasts – which raises funds for Breast Cancer Foundation NZ’s work to support patients through their treatment and recovery – I wanted to share the stories of the women and families who have had to continue their treatment and recovery through the stress and disruption of Covid-19.
I had the privilege to meet Chloe Irivine and talk to her about her journey with breast cancer since her diagnosis in September. She told me about the intense fear that comes with cancer and the way Covid-19 amplified that. Then lockdown isolated her from her support network and put huge pressure on her as a mother to Coco (8) and Isla (4). During her treatment, she met women forced to go through the entire experience on their own because of Covid restrictions. Because of that, she calls herself lucky. I say she’s brave and compassionate.
The Spinoff is holding a Pink Ribbon Breakfast to support Breast Cancer Foundation NZ’s vital work. Hosted by Stacey Morrison on July 28, tickets – in the form of a donation – are available here.
The money raised will help fund groundbreaking work by some of our country’s top breast cancer researchers, educate people about breast health, and provide free support services for breast cancer patients. Sign up to host your own Pink Ribbon Breakfast here.
Why were you willing to share your story?
Bringing awareness to important issues is something I’ve been passionate about my whole career. And to be able to speak about an issue that has impacted me and impacts so many women, when a lot of women don’t feel comfortable speaking out, is really important.
I hope my story can get women to check their breasts, for people to give generously to the Breast Cancer Foundation, and to be more aware of the reality of breast cancer.
You have this picture in your head of what cancer is like, then it happens to you or someone close to you and it is so much more extreme and overwhelming and life-changing than you could ever imagine.
Your mum had breast cancer too huh?
My mum had breast cancer at 37. And you’re young too.
I’m 41. I was diagnosed when I was 40.
You did well to discover it, how did you do that?
I’d had some pain around my chest. Pain isn’t usually a symptom of breast cancer, but this made me worried. I wasn’t a person who ever checked their breasts. I just never thought I needed to.
Because of no family history?
No family history and I was young and healthy, and I guess I had the “I’ll be fine” attitude. You just don’t really think about it.
So I had some pain and then felt a couple of lumps. They were tiny and my doctor checked them and said she thought they were fine and was 99% sure they were cysts, but she sent me to the specialist just in case. I then had mammograms, ultrasounds and biopsies and the specialist also said “don’t worry, I’m pretty sure they’re cysts, go home and don’t worry about it. I’ll ring you in a couple of days and it will be good news.”
How was your headspace at that time?
I was fine, I wasn’t really worried at all. They gave me such reassurance, that I thought everything was fine.
We had a big event for work with Helen Clark which I was running. I got a call from the specialist about an hour before I was about to leave for the venue asking if I could come in the next day to talk about my results. As soon as I got that call I knew it had to be bad news. I knocked back a Lorazepam to get me through the night and then just spent the next day pretty anxiously waiting until my 5pm appointment.
The specialist told me “you’ve caught it so early, you’re really lucky, it’s so small, you might not even need chemo”. From what they could see there was only one tumour. Though they told me I needed a mastectomy – because there was lots of DCIS in my breast.
Two weeks later I went in for a mastectomy. I was lucky I had health insurance so that was really quick.
From that, they found eight or nine tumours in my breast and the whole breast was actually riddled with cancer. The tumours were small and other than the main one, which was a bit bigger, they didn’t see the others on the ultrasound, or mammogram or MRI. It had also spread to my lymph nodes.
It suddenly went from being “you’ve caught this early, you might not need chemo” to stage three cancer. Before the operation, my specialist was telling me it was going to be a tiny blip in my life, and then after the operation, I asked, “is this still what you think?” And he said, “you need to talk to your oncologist”.
I had six months of chemo and then three weeks of radiation which I finished about a month ago, at the beginning of June. I’m now having targeted treatment until the end of January.
You were talking about how it’s so much different from what people expect, and in all of that roller coaster of emotion what were some of those things that you hadn’t anticipated? The emotional responses you didn’t anticipate?
Until you live through it, you really have no idea how terrifying cancer is. I’ve suffered from anxiety in the past and after I was diagnosed it just went into complete overload. I was pretty much having panic attacks constantly because I was so frightened. The fear I felt in those first few weeks is almost indescribable. And although that fear calms down, it never really goes away. If my cancer comes back, it’s incurable. I try not to live in fear, but at the moment there is not a day or an hour that goes by that I don’t think about it, where I don’t think about what might happen in the future.
Physically, chemo was so much harder than I expected. You see people or hear about people doing chemo and you think they’re really brave and strong, and then when you do it yourself you realise you had no idea what they were going through. No idea.
But I think the scariest thing is that uncertainty around the future. My particular type of breast cancer [HER2+] has a high recurrence rate. Right now I’m clear – the mastectomy and chemo have got rid of everything that was there – but you just don’t know what the future is going to hold. I’ve never had any fear as deep or all-encompassing as I do now.
I just don’t think you can fully understand just how terrifying it is until either yourself or someone really close to you has cancer.
Until my diagnosis I hadn’t had anyone close to me have cancer. So I had no idea. And then my mum got diagnosed four weeks after me with stage four lung cancer.
Are you serious? I’m so sorry.
Yeah it’s been a crazy, crazy time.
As a mother, how does that heighten your response to having cancer?
It’s the worst thing. The absolute hardest thing. Just not knowing what is going to happen in the future – the thought of not being here for my kids is the most terrifying part of it all. And talking to my daughters about it is so hard.
I’ve said to them “I’m going to be fine and it’s all going to be OK” because I need them to believe that. Recently I made the mistake of saying I was taking some medication to stop the cancer coming back. And Coco said “I thought you said it was never coming back”.
How old is she?
It’s a big developmental time.
Yeah. She talks a lot about people dying. She asks me now about once a day, anytime she’s found out someone has died. “How old were they when they died?”, “how did they die?” or even when we’re watching a movie she’ll ask about the actors “are they still alive?” And I know it’s her little brain working things out. And since my diagnosis, she sleeps in bed with me every night.
It’s really hard. Can I give you a hug? My mum was carrying my sister Jorgia when she found out she had cancer. And then she was seven when mum died. She’s 25 now. And it’s a developmental stage when they realise people die and what that means. I have real aroha for how that must impact you as a mother.
I feel like that is a particular urgency and concern for this year, that people have had experiences because of Covid-19. Pandemic or not, cancer doesn’t care.
I have my Herceptin at Auckland hospital and due to Covid you’ve got to go through a screening process. One week I was waiting to go through and there was a boy who was about 18 and his mum was with him, but she couldn’t go in with him for treatment, because we all had to go in by ourselves. And so he went in for his treatment and she was standing at the door watching him just crying and crying. Through her tears she said “good luck Matthew, I love you Matthew”. Her son was going in to get his treatment and she’s standing there bawling, not able to go in.
That same day I met a woman and it was her first treatment, she had just been diagnosed not long ago and because of Covid was coming in to have chemo by herself. I asked, “how are you?” and she just burst into tears.
She was so scared and I remember I was terrified of my first chemo. My husband was there with me and I had so much prep and I was still so scared. I just can’t imagine what it would’ve been like without that and to have to go through it alone.
I’m just really mindful of that this year and it’s part of the urgency because there are a lot of stressful things at the moment but this has definitely heightened the stress for people. How was lockdown for you considering how you were feeling at the time?
I was so lucky that it didn’t affect my treatments. But it was terrifying at the start of lockdown not knowing what was going to happen. My immunity was so low and I had my mum also at risk, so it was really scary.
And it was pretty hard having the kids at home as I was still undergoing chemo. My husband was amazing but was so crazily busy with work I was doing a lot of the childcare. I would have days where I would be up for 15 minutes, and then have to go back to bed. I just felt so sick.
And we couldn’t have anyone to help. Usually, our nanny, my sister or my mum would come and look after the kids after I’d done chemo, but they couldn’t.
Prior to lockdown I’d been quite intentional about healing and giving my body and mind space to heal and strengthen. It felt like in that six to eight weeks of lockdown, that I went backwards quite a lot because I didn’t have any space to heal. I couldn’t meditate, I couldn’t work on my mental health and I was just exhausted.
Because those are the things that help you get by and you’ve found those strategies and you weren’t able to utilise them in the same way.
Yeah, and I was just exhausted and I was used to having space and time to rest and relax and heal especially during chemo. But being 24/7 on with the kids meant I couldn’t do that.
And your head is with the kids. In that 15 minutes you’re not really relaxing because you’re thinking “I’ve got to go back to the kids”.
That was hard. There were a number of days when I thought I can’t actually do this anymore, I feel like I’m about to vomit and I can’t even string a sentence together because my head is so fuzzy, and as far as I can walk is between the bed and the couch.
And you described your experience of lockdown as “lucky”.
I think I was lucky compared to others also facing cancer. I was lucky that I was towards the end of my chemo. Yes that made me more exhausted, but I knew what my body was going to be going through. I had kind of found my chemo rhythm, whereas there are people that I’ve met who were starting their chemo during lockdown and I think that’s so much harder.
I have an old friend who was diagnosed with breast cancer in January. Her chemo started right at the start of lockdown so she didn’t have any pre-chemo briefings with the nurse. She’d never met an oncologist in person until two weeks ago. She’d just had phone calls and she had to go in by herself for chemo as well. She missed out on so much information and care. I was really fortunate I had the experience I had.
I think that’s a good point. It’s very generous empathy from you though.
Yeah, but it wasn’t all bad. I would go for walks up the maunga with the kids and do Zoom dance parties on the days I felt good and we had some great times.
In terms of family and friends who might be reading this and from your experience how would you say that people can help, or what sort of help has been really helpful for you?
We have the most incredible support network, it blows my mind. We’ve been so incredibly well looked after and supported by amazing family, friends, people who I’ve haven’t seen for years, and even complete strangers. Meals, cards, messages, financial support, prayers, flowers, friends looking after the kids, it’s been endlessly amazing.
You need that kind of love. I get lots of messages from people saying they’re thinking of me, and it makes such a massive difference. Especially when you’re going through chemo and you don’t really feel like interacting or going out. Just a text or Instagram message can mean so much and give you strength.
One thing I think is really important for people to realise is that having cancer is a long, long journey, and unfortunately, it’s one which never really ends. I’m starting to feel better, but it’s still a huge part of my life and it doesn’t go away. Everything I do, what food I eat, what exercise I do, is focused on making sure it doesn’t come back. And that fear and thought is constantly on my brain.
So it’s helpful when friends and family have an awareness that even when the visible part, like surgery or treatment, is over there’s still a massively long journey to go. I’ve had a few people who have been like “great you’ve finished your chemo, you’ll be fine” and yes that’s amazing and positive, but actually, there’s a huge road still ahead. I’m always going to be focused on doing everything I can to make sure it doesn’t come back so people should understand the ongoing emotional effect cancer has on someone. I’ve read that it’s not uncommon for people to get PTSD after a cancer diagnosis and I’m not surprised.
And that’s one reason why we do the Pink Ribbon Breakfast so that people can have a way to express their support for people. Because sometimes you don’t know what to do as a friend.
It’s such a great way to support women and men going through breast cancer.
What would you say to women who can see aspects of themselves in your life?
Be really vigilant and actually check and go to the doctor if you see or feel something because early detection helps you so much more. Know what the signs are – I didn’t realise that nipple discharge was a sign of breast cancer, and I had some which I attributed to an after-affect of breastfeeding. You’re not going to lose anything by being over vigilant. But if you are too scared or you think it’s not going to be me, that’s when your world could come crashing down.
I’ve met one woman who literally read one of our articles, checked herself and found a lump and has managed to stay with her family ever since and she was only 33. That’s enough for me, to know that three kids have their mum.
Absolutely. That’s why we share our stories.
It’s really kind of you to offer your kōrero. I always hold in my heart the belief that another woman will be helped,
That’s what I hope too. And thanks for doing everything you do.
Well, it’s heaps easier than chemo. You’re amazing.
The Spinoff Weekly compiles the best stories of the week – an essential guide to modern life in New Zealand, emailed out on Monday evenings.