Women get hon­est about breast can­cer

Good friends, bad wigs, telling your kids and when not to Google your type of can­cer… Three women cur­rently un­der­go­ing treat­ment for breast can­cer talk can­didly to Emma Clifton about what it’s like to ex­pe­ri­ence some­thing that af­fects one in nine New Zeal

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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’.

‘If any­thing good has come out of this, it’s that a

lot of friends have had mam­mo­grams done’

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 straight­for­ward 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

‘I’d be rich if I got a dol­lar for ev­ery time some­one told me,

“You look really well.”’

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.

Beth Chap­man, 59, is re­tired and vol­un­teers at Auck­land Zoo. She has three adult chil­dren and was di­ag­nosed this Fe­bru­ary. Her sis­ter has also bat­tled breast can­cer.

Emma Clifton, 32, is

the deputy editor of NEXT. She lives in Auck­land and is pas­sion­ate about bring­ing real talk to real women’s is­sues, like fac­ing breast can­cer.

Natasha Holland, 42, is mum to two young chil­dren. She was di­ag­nosed with can­cer this Fe­bru­ary af­ter a sharp pain. She has no fam­ily his­tory of breast can­cer.

Grace Har­ris, 52, works as a nurse at Star­ship Hos­pi­tal in Auck­land. She has two teenage chil­dren and her mother died of breast can­cer four years ago.

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