THE BREAST CAN­CER SUR­VIVORS’ HAND­BOOK

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The num­ber of women de­vel­op­ing breast can­cer is at an all-time high – al­most 55,000

each year – but so are the num­bers sur­viv­ing it. While it’s a cause for cel­e­bra­tion, it also means more and more women are fac­ing the chal­lenges of liv­ing with – or be­yond – breast can­cer. So how do you cope with the diagnosis, treat­ment and the phys­i­cal

and emo­tional ef­fects? We asked the real ex­perts – the women who have been through it – to share the lessons they’ve learnt…

FIND­ING OUT IT’S CAN­CER

You may have had your sus­pi­cions and been on ten­ter­hooks wait­ing for re­sults, or dis­missed the lump as noth­ing to worry about. What­ever your sit­u­a­tion, the diagnosis is life-chang­ing. ‘I’m usu­ally very pos­i­tive and up­beat, but when they took me to the quiet room, I thought that’s it, I’ve got it, and my world fell apart,’ says Jo Jones, 46, di­ag­nosed five years ago.

You may feel shocked, an­gry (why me?), guilty (have I caused this?), help­less, scared (I’m go­ing to die), dis­be­liev­ing (but I’m healthy) or just numb. You may want to know ev­ery de­tail about your can­cer, or noth­ing at all. And as if all this wasn’t enough, you now have to tell other peo­ple. ‘Can­cer is just not talked about in the In­dian com­mu­nity,’ says Anisha Pa­tel, 36. ‘I was devastated, and telling peo­ple was def­i­nitely as hard as find­ing out my­self. At first, my mum didn’t be­lieve me, but when I in­sisted this was real, she just broke down.’

Some­times it helps to de­lay the con­ver­sa­tions un­til you have more in­for­ma­tion or an op­por­tu­nity to take it all in your­self. ‘You don’t know how other peo­ple are go­ing to re­act, and you may have to steel your­self be­cause they won’t nec­es­sar­ily re­act in the way that you ex­pect – breast can­cer is what many women fear and for some peo­ple it is just too much,’ says Rachael Raw­son, spe­cial­ist breast care nurse at Breast Can­cer Care.

Hay­ley Ryan, 36, was di­ag­nosed with triple-neg­a­tive can­cer in De­cem­ber 2015 af­ter mis­di­ag­no­sis of a lump that con­tin­ued to grow. ‘By that time it had spread to my lymph nodes, and I started chemo­ther­apy the week be­fore Christ­mas. It scared peo­ple. I was young, I ran three times a week, ate healthily, never drank or smoked, so if it could hap­pen to me…’

Talk­ing to chil­dren can be es­pe­cially hard. ‘Mine were 12 and 14 then, and I rang my friend, vir­tu­ally hys­ter­i­cal, won­der­ing how I would do it,’ re­mem­bers Jo. ‘When I told them, my daugh­ter burst into tears and my son slid off the sofa laugh­ing. I think he just didn’t know how to re­act.’

There is no right or wrong way to get through treat­ment, ev­ery­one is dif­fer­ent

HOW WILL I GET THROUGH THE TREAT­MENT?

Hav­ing can­cer is a full-time job. You’ll find that your days be­come packed with hos­pi­tal ap­point­ments, lit­er­a­ture to read, de­ci­sions to make, all while you feel more tired than you ever thought pos­si­ble. Sud­denly find­ing that you’re a pa­tient can be a ter­ri­ble shock. ‘What I hated most was the loss of con­trol and of my iden­tity – I felt I wasn’t al­lowed to be me any more, it was all about the treat­ment,’ says Mary Ryan, 59, di­ag­nosed in Jan­uary 2016. ‘I joined a Breast Can­cer Care fo­rum early on, and those women helped get me through.’ She made a count­down cal­en­dar so that af­ter ev­ery treat­ment she could rip off the num­ber and throw it in the bin.

Hay­ley found it hard to take in at first. ‘I couldn’t quite en­gage with the re­al­ity of it un­til my hair fell out and then I didn’t just lose my hair, I lost my­self. Chemo strips you of your iden­tity in­side and out.’

Jo felt the same way. ‘I’m an in­ten­sive care nurse and I could not get my head around the fact that I was now on the other side. Ev­ery­one thought I was cop­ing re­ally well, but I was get­ting through on au­topi­lot be­ing very up­beat and ev­ery now and then, I’d have a melt­down.’

There is no right or wrong way to get through treat­ment, ev­ery­one is dif­fer­ent. Ig­nore the peo­ple who urge you to ‘fight’ and ‘be strong’ if you just want to curl up and cry. But if your way is to fight your way through it, then do that, but go easy on your­self. ‘My re­ac­tion was to go into fit­ness mode,’ says

Ma­ri­ette Ma­son, 59, ini­tially di­ag­nosed aged 32, and then 21 years later with an­other pri­mary can­cer in the same breast. ‘Both times I worked out in the gym, al­though I re­mem­ber weep­ing af­ter the first chemo and the trainer telling me to go easy on my­self.’ Ma­ri­ette got through the sec­ond can­cer her own way. ‘I was al­ler­gic to her­ceptin and didn’t want to take ta­mox­ifen be­cause I’m a com­pet­i­tive fencer and it af­fects mus­cle, so I per­suaded my on­col­o­gist that I could use ex­er­cise to keep my can­cer at bay. Seven years on, I’ve just com­pleted a full Moon­walk marathon – my chance to give some­thing back – and qual­i­fied for the Bri­tish Fenc­ing Cham­pi­onships.’

You will prob­a­bly come across wellmean­ing peo­ple who say the wrong thing or who shower you with ad­vice on how to beat your can­cer – with diet, life­style, al­ter­na­tive ther­a­pies, pos­i­tive thoughts. If any of it ap­peals, fine. If not, work out a few stock an­swers so that you don’t have to get in­volved in a dis­cus­sion.

Sup­port can be in­valu­able. Mary says she couldn’t have got through with­out her four sis­ters (‘I was never on my own, there was some­one with me at ev­ery ap­point­ment’), but you can be left feel­ing let down by some. The most un­likely peo­ple can step up whereas oth­ers may keep their dis­tance. ‘There are friends I’ve not heard from, al­though oth­ers have been fan­tas­tic,’ says Anisha. ‘The best were peo­ple who sent sup­port­ive mes­sages say­ing they were think­ing of me, no need to re­ply.’

‘It’s al­ways bet­ter when peo­ple say some­thing rather than avoid­ing you. They don’t al­ways get it right, so I de­cided that it would be a waste of my pre­cious en­ergy to let it up­set or anger me,’ says Gill Smith, 60, whose can­cer had spread to her lungs, liver and bones by the time it was di­ag­nosed. Breast care nurse Rachael Raw­son agrees. ‘The key thing is to con­serve your en­ergy for the im­por­tant stuff and take the help that’s of­fered.’

If you have a part­ner, they may strug­gle, too, feel­ing afraid, frus­trated by not be­ing able to fix it or hav­ing to step into an un­fa­mil­iar role. ‘It was hard for my hus­band, I was frail one minute, an­gry the next. Part­ners can feel so help­less in the face of can­cer,’ says Nicky Peters, 46, di­ag­nosed 18 months ago.

You may feel iso­lated, par­tic­u­larly if you are younger. ‘At 36, I was al­ways the youngest in the wait­ing room at the hos­pi­tal, so I felt very alone,’ says Anisha. Nicky’s sense of iso­la­tion was com­pounded by the fact that she didn’t have chemo­ther­apy. ‘I had a mas­tec­tomy, ra­dio­ther­apy and re­con­struc­tion, al­though I’d gone into treat­ment ex­pect­ing to have chemo. It sounds mad, as no one wants to have chemo, but I al­most felt cheated. I didn’t look like a can­cer pa­tient on the out­side, al­though, in­ter­nally, I was re­ally strug­gling, I felt a fraud, as though I hadn’t “prop­erly” had can­cer.’

LIFE AF­TER TREAT­MENT

‘This can be a cri­sis point for many women,’ says breast care nurse Rachael Raw­son. ‘You’ve been in the treat­ment tun­nel and an­tic­i­pated the joy of reach­ing your goal of fin­ish­ing, and sud­denly you’re there and the re­al­ity is quite dif­fer­ent.’ And while you’re strug­gling to come to terms with what has hap­pened to you, the peo­ple around you can for­get very quickly, swept along by their own re­lief that your treat­ment is over and things are back to ‘nor­mal’. Only they’re not. ‘You still have to deal with the re­al­ity of can­cer on a daily ba­sis and try to come to terms, lit­tle by lit­tle, with what has hap­pened,’ says Rachael.

It’s very com­mon to feel lost, vul­ner­a­ble and more fright­ened and un­cer­tain than ever in the months af­ter treat­ment ends. ‘Can­cer is the easy bit, it’s af­ter­wards that the hard stuff starts,’ says Nicky. ‘I’d liken it to a grief cy­cle – you need to mourn the things you’ve lost and find a way to move for­ward.’ You may have to come to terms with a changed body, los­ing your fer­til­ity, life-chang­ing side-ef­fects and the loss of a sense of cer­tainty in life and your health. ‘For me, life didn’t feel safe any more,’ says Jo, ‘es­pe­cially when one of the ladies I’d made friends with died. That hit me hard. I felt I was never go­ing to be safe.’

The changes to your body can have a pro­found ef­fect on how you feel sex­u­ally and your sense of your­self. ‘My body con­fi­dence has been hugely af­fected by the can­cer,’ says Anisha. ‘My part­ner al­ways tells me I’m beau­ti­ful, but I don’t feel it and strug­gle to get un­dressed in front of him.’

You wouldn’t be nor­mal if you didn’t have a few wob­bles. While you may have longed to see the back of the hos­pi­tal and your treat­ment team, you may find your­self yearn­ing for the se­cu­rity and com­fort of know­ing some­one is look­ing af­ter you. Be pre­pared for the anx­i­ety about your body to per­sist. Fol­low-up will de­pend on your in­di­vid­ual sit­u­a­tion, but many hos­pi­tals don’t pro­vide rou­tine scans. Stud­ies have shown they aren’t use­ful in find­ing re­cur­rence and don’t im­prove over­all sur­vival, but you can be left feel­ing cast adrift. Anisha finds that she still no­tices ev­ery symp­tom and con­stantly checks her other breast. ‘I have to try to dis­tract my­self or it would take over my life,’ she says.

Jo had per­sis­tent prob­lems af­ter treat­ment fin­ished. ‘I never knew whether it was a side-ef­fect or the can­cer com­ing back, so ev­ery­thing new sent me into a panic,’ she says. ‘It wasn’t un­til last year – four years on from the diagnosis – that I felt I was re­ally mov­ing for­ward. There are still mo­ments of panic, but it does get eas­ier.’

It will prob­a­bly feel hard to look ahead and plan but, with time, this will im­prove. ‘I feel as though I’m on the other side now. I’m look­ing for­ward, which isn’t some­thing I could have imag­ined last year when I lived from ap­point­ment to ap­point­ment,’ says Mary. ‘I de­cided to re­tire early and now I’m plan­ning my hol­i­days for the next 10 years.’

‘I de­cided to re­tire early and now I’m plan­ning my hol­i­days for the next 10 years’

BAD NEWS... WHEN CAN­CER COMES BACK

Al­though many women move on from can­cer, for some it does come back and some, like Gill, have an ini­tial diagnosis of sec­ondary breast can­cer. ‘This is al­most an­other story and mas­sively chal­leng­ing for any­one,’ says Rachael Raw­son. The news of a re­cur­rence can feel far harder than the ini­tial diagnosis. The chal­lenge, and it’s a big one, is not to let your pas­sion for liv­ing be swamped by the fear of dy­ing.

Hay­ley and her hus­band re­newed their mar­riage vows on 1 April this year. Three days later, she was told her can­cer was back, unusu­ally, in her skin. ‘I’m about to start more treat­ment, but I live with a con­stant sense of be­reave­ment. I see the in­evitable off in the dis­tance, but most of the time I keep it at bay. My hus­band is so pos­i­tive, he’s re­ally the only per­son I can cry on, al­though we have lots of laughs and live a nor­mal life. I im­merse my­self in the chil­dren and just let them lead me through the day.’

Liv­ing with this level of un­cer­tainty can be ex­haust­ing. It can bring peo­ple closer, but it can be im­mensely chal­leng­ing as well. Plan­ning for the fu­ture be­comes dif­fi­cult, and some fam­ily and friends may strug­gle to know how to be­have. ‘I’m very close to my mum, but she’s very emo­tional and see­ing my mum in such pain is so hard to bear when I know I am the cause of it. I just don’t have the en­ergy for other peo­ple’s grief,’ says Hay­ley.

Gill de­cided early on to be open about her sit­u­a­tion with fam­ily and friends. ‘My can­cer is con­trolled but I know that at some stage the drugs will fail, so I’ve tried to pri­ori­tise the im­por­tant things, fo­cus on what I can do – not what I can’t – and build mem­o­ries. I think it’s far harder for my fam­ily than for me.’

For Hay­ley, meet­ing some­one in the same sit­u­a­tion has been piv­otal. ‘A lot of my friends are too fright­ened to talk about it and I felt like a leper at work. My friend is in the same sit­u­a­tion, she’s the same age, same life­style and we can say any­thing to each other. We share a lot of dark hu­mour. There are no bar­ri­ers. Now I don’t want to do any­thing that wastes time and en­ergy. I’m very thank­ful for what I’ve got, a won­der­ful fam­ily and a fan­tas­tic life, there’s not one thing I re­gret.’

Fo­cus on what’s im­por­tant to you in your life

Seek sup­port from the peo­ple you can rely on

Mov­ing for­ward: it will take time to find a new ‘nor­mal’

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