Good friends, bad wigs, telling your kids and when not to Google your type of cancer… Emma Clifton talks to three women who are currently undergoing treatment for breast cancer about what it’s like to experience something that affects one in nine New Zealand women.
What do we call you?
Emma: Do you describe yourself as a breast cancer patient or a survivor?
Natasha: I wouldn’t classify myself as a survivor yet. I’ve done five months but I don’t finish until May next year, so the cancer’s been cut out, but I’m still on the journey.
Grace: As you go through different stages, it changes. When you have the surgery initially it hits you; I found losing my hair really hit me as well. But I’d agree; you’re on that journey at the moment. I don’t know at what stage you’d really say you’re a survivor. Five, 10, 15 years?
Beth: I just say I’m going through therapy for breast cancer. I’m on my last one next week. I’m looking forward to that, to celebrate. It’s finishing the chemo that’s the important thing for me. It’s a big milestone, getting through that.
Diagnosis
Emma: How did you discover you had breast cancer?
Beth: Mine was picked up on an ultrasound. I was regularly going for my tests. [To Grace:] Was yours picked up in a mammogram?
Grace: No. It was picked up with a lump which my husband found.
Beth: Were you having mammograms?
Grace: Yup. Twice-yearly.
Natasha: Mine was picked up by a random pain that was so electrifying I was like ‘What the hell?’, which prompted me to have a feel. I wasn’t due to have a mammogram, it wasn’t even on my radar. So when I got the news it was a bit of a shock.
Emma: It must be hard to have such a massive, open-ended thing spring up in your life.
Grace: It’s quite frustrating. You’re thinking, ‘Okay… I’m going to work till then, and then my daughter’s going to have a baby and then I’m going to retire’, and then it’s just like ‘Ah!’ – everything’s been thrown.
Natasha: It shows the importance of having a mammogram. If anything good has come out of this, it’s that I’ve had a lot of friends have mammograms done. I’m 42 so mammograms weren’t even on my radar and I’ve got no family history, nothing.
Grace: And I think just being aware of what’s going into your body and exercising. Also be aware of any changes in your body. Get help early, get checked out.
Beth: It can happen to absolutely anyone, it’s not selective at all. My sister ate boringly healthily and still does, mind you, and she got cancer.
Who to tell
Emma: How do you decide what to say to people? Or whether to say anything at all?
Grace: I’m a nurse and I work with children with diabetes so I was in a conundrum initially; do you tell people or not? I waited until I knew what I had to do and when I had to have chemotherapy, and I got a friend at work to tell my work colleagues. I put it out on email and newsletters to say: “This is what’s happening, this is why I’m not at work for six months”. But I think a lot of people want to be private.
Natasha: I told a few friends that I had found a lump but I never really thought I’d have cancer.
Grace: You just hope ‘Oh no, it’s just going to be one of those ones that are benign’.
Natasha: We told our really good friends and started up a closed group on Facebook because people wanted to know what was going on. It’s been really good as far as keeping everybody in the loop. I think support is a massive part of your recovery.
Beth: It’s just my close friends that know. I haven’t put it on Facebook or anything like that, but anyone that needs to know, knows. I’m not one with thousands of friends anyway. I had just started volunteering at the zoo when I was diagnosed so I had to tell them. They were very good about it.
Emma: How were your workplaces?
Grace: Very good. I work at Starship; I had a new nursing unit manager, so she said “Take as much time as you want off.” It’s a relief to be able to concentrate on yourself and not have to drag yourself to work when you’re feeling yuck.
Treatment
Emma: Did it surprise you all how long the process is, from diagnosis to now?
Beth: For me, I think it’s happened very quickly, to be honest. I was diagnosed at the end of February and here I am with my last treatment next week, so to me it’s just a little inconvenience this year.
Grace: I think that it depends on what therapy you need. I’ve got the chemotherapy and I chose to have breast reconstruction at the same time as the surgery. I got the implant, and a month after that I had to have radiotherapy for three weeks. I’m HER2-positive [a protein which can make the cancer more aggressive], so I take Herceptin, which continues from a couple weeks’ time for a whole year, and then there’s oral drugs for five years.
Natasha: It all happens so quickly from when you get told you have cancer to having surgery. My three big things were getting diagnosed, having surgery and losing my hair. The next one is finishing chemo, which represents a little bit of light at the end of the tunnel.
Beth: It’s all those appointments and things. Every day there’s something, isn’t there?
Grace: Yeah, blood tests and I’ve been quite conscious to look at other aspects too. I’ve started Pink Pilates – Pink & Steel fund that for your first assessments because exercise is quite important in coping with chemotherapy as well as prevention of cancer and general health. It’s trying to work out what you can do while you’re feeling sick. My mum had breast cancer – she died four years ago – so having gone through the journey with her, I thought ‘I want to do this instead of that’.
Beth: My sister had a lumpectomy. At the time I thought ‘Why doesn’t she have the whole breast removed?’, but it’s her choice. Then of course she developed it on the other side and because of that I thought, ‘Right, I’m not hanging around; both are going’.
Reconstruction
Beth: You guys have both gone for reconstruction, I chose not to. If I was younger, I probably would’ve but it was just something where I was like, ‘I don’t need to deal with that as well’.
Natasha: I had a chat with a friend today who has breast cancer and we were talking about when you have reconstruction, what do you do about your nipple? Do you bother, do you not bother?
Grace: It’s also about what’s covered by public and what’s covered by private.
Natasha: It’s just not at all a straight-forward decision.
Hats & wigs
Emma: How was it getting used to having no hair?
Beth: It didn’t worry me. I got rid of it before I started my chemo because I didn’t want it falling out in handfuls, I didn’t want it falling out on the pillow. But for some people…
Emma: It’s massive.
Beth: Maybe it’s my background. I nursed my mother and my father, they both died of cancer, my sister had cancer. So I’m pretty matter of fact about things, and I was a nurse. The pain with the wigs – getting them to fit or stay on and you get hot, you get cold. You just want to rip the thing off.
Grace: I wasn’t sure whether I’d want a wig but I went in with my daughter. I wear it mostly for going out socially. But I did find it quite hard losing hair; it sort of reinforces that you have cancer, and it just made me realise how much your hair is part of your self-image. I haven’t had short hair since I was nine, I’ve always had long hair. And when it’s on top of having your breasts off… because I had it in both my breasts, I had a mastectomy. I did find it quite hard.
Natasha: I think because people say it happens after the second chemo, I thought ‘Yeah, we’ll see’. I had the second chemo on the Tuesday and by the Monday…
Beth: It’s falling out. Clumps.
Natasha: And I go, ‘That’s quite a lot more hair than yesterday,’ so then I thought, ‘this is the last time I’m going to brush my hair for a very long time’. I got my daughter’s hairbrush and brushed my hair out for a while – then we cut it off really short. I don’t wear my wig, I’ve always worn a beanie. My wig doesn’t feel like me.
Beth: My hair was very curly, and you can’t get curly wigs. I look in the mirror and think ‘Is that me?’
Talking to the kids
Natasha: It’s been interesting for me, with not doing the reconstruction straight away. My daughter’s seven and she’s quite inquisitive about the scar and what’s happened. We’ve been very open with the kids, trying to make them not afraid, and realise that just because you have cancer doesn’t mean you’re going to die. She said to me one day out of the blue, “You’re never going to be the same, Mummy,” and I said “What do you mean?” and she’s like “You’ve only got one boob!” and I was like “Well I’m going to get another one”. It’s just educating them… It’s such a personal thing.
Emma: Was that your plan from the word go, to be very open with them?
Natasha: Yes; because they are seven and 10, they’re not silly. On the drive home from the surgeon after the news, we were just in shock and there were a lot of tears and we said, “We need to be honest”. It’s not everybody’s way… but I think it’s only going to make them even better kids than they are.
Beth: Yes, more caring.
Natasha: It’s been good for them. It’s like, I wouldn’t want them to come to chemo and sit there and watch that but…
Grace: My daughter [15] came with me in the school holidays.
Natasha: It’s fine when they’re older. There are some things mine don’t need to see. But it’s good that they understand.
Friends
Emma: How can people be more useful, and what are some things to avoid saying to someone with breast cancer?
Natasha: Don’t ever tell someone they’re lucky. And meals are good – we set up a thing called Meal Train so you went online and people booked a day that suited them and you could see who was cooking what.
Beth: With children, I think that is really important. [To Natasha:] I don’t know how you did it with children.
Natasha: You just have to.
Beth: That would be the hardest thing. At least it was just my husband and I. It’s okay to get a meal for two, but when you’ve got children to consider. You’ve got to bath them, you’d have to have good support.
Grace: I have a friend who brings sushi for lunch or drops by with nice things. Even people texting and messaging shows they are thinking about you. Work put money together and got a cleaner to come in.
Natasha: People surprise you. The ones you think might be there for you aren’t. It’s really interesting.
Beth: Some people can’t handle it. They don’t know what to say. Just say “Hi”, you know? “Let’s meet up for a coffee” or “I’ll come round and we’ll catch up”. People are scared. They don’t know how. So if you do know someone who’s got cancer, don’t just forget about them. Don’t stop contacting them. Because it is only cancer that we’ve got and we’re all going to get over it.
Natasha: Yes, don’t be afraid. We’re not aliens, we’re just like you but we’ve got things going on, so don’t be afraid to send a text saying “Hi, thinking of you”. The little things can make such a difference.
Beth: And with friends, you just want to talk about normal things. You don’t want to talk about the cancer. You just want to carry on normal conversation and have your friends around. Have a laugh.
Emma: One of the things we often say to women with cancer is, “You’re so strong, you’re so brave”. Does that take away the option for you to go, “Actually, this is really hard and I’m struggling today”?
Grace: It does annoy you a little bit. You’ve got to have the chance to go “Oh god, this is terrible and I’m feeling really crap”. As well as “Right, I can do this”. It often fluctuates.
Natasha: I don’t find people cope when you say you’re not having a good week.
Grace: They’ve got to allow you to as well.
Natasha: I love getting messages but I find if I go back and I say “I’m not having a good week”, people don’t know what to say. When you get diagnosed, you can either drown in it or you can go ‘I’m going to fight this and we’re going to get through it’. But I think people need to allow you to have that [bad] day. It’s certainly been a harder journey than I thought.
To Google or not…
Beth: I’m HR-negative [hormone receptor negative; this type of cancer doesn’t have hormone receptors, so hormonal therapy can be less effective]. When they first told me, I thought ‘Oh, negative… that sounds good’. But my specialist said “Don’t Google it; it gets a very bad rap”. Unfortunately my husband went straight home and Googled it. So he went back to the oncologist with all sorts of questions.
Good days & bad days
Emma: How do you look after your mental health?
Natasha: I had to learn to be kind to myself. You have good days and bad days so on the good days you do all the things you want to do – go for a nice walk or go for a coffee. It’s the one chance you’ve got to think about yourself and no one can tell you how you feel. You might look fine – I’d be rich if I got a dollar every time someone told me “You look really well”.
Grace: Allowing yourself to just take time for yourself is part of it. Giving yourself permission to have bad days and just crash. Because otherwise it’s unrealistic.
Beth: I’ve tried to not let it disturb my life too much. I had the mastectomy on the Wednesday and said to my surgeon I wanted to go to a wedding on Saturday and she said, “And so you should”. I walk my dogs every day; the first time I could barely get to the letterbox but I thought ‘It’s got to get better’. I do try to keep very normal. My husband says, “Do you feel like doing it?” and I say “I’m doing it whether I feel like it or not”.
Natasha: Because I feel sick all the time, I can’t walk every day, which was my ‘me time’ so on the days I feel like I can, going for a 20-minute walk around the block is really good for my head space. Having that fresh air, being outside. When you’re a mum, you still have to function as a mum – whether that’s lunches, dinners, making sure the kids are at the right place at the right time. Asking for help is important and I’m not very good at doing that. I can’t drive because the nausea drugs are too strong and [make me] too drowsy so I do have to rely on other people.
Grace: It’s giving yourself permission to accept help, isn’t it?
Natasha: The other thing is going to Dove House [where they support people with a life-threatening illness]. I’ve never realised how therapeutic and relaxing having a facial is. It’s you treating yourself, because as a woman you don’t. You go ‘Oh I must do those every month’ and you never do. The only thing you do regularly is maybe get your hair cut.
Beth: We don’t now.
Grace: That’s one advantage.
The future
Emma: What’s your plan for after your final round of chemotherapy?
Beth: I’ve got holidays planned. It’s my 60th birthday in September and we’ve organised the family to go to Queenstown. So I’m looking forward to that.
Grace: You’ve got to plan things. I’ve got my halfway point this weekend so I’m going to Australia for my sister-in-law’s 50th in Brisbane.
Beth: My nursing friends that I trained with 40 years ago are all turning 60, so we’re all off to Melbourne for a long weekend in October.
Natasha: It’s our 10-year anniversary in October so we had planned for friends and family to come to Fiji with us, but we put them on hold and we’re still going to go. I need something; it’ll be really nice to get away.
NEXT magazine would like to thank Rosie café in Parnell for their wonderful hospitality. If you have any questions or concerns, call 0800 BC Nurse (0800 2268 773) for free advice.
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