THE BREAST CANCER SURVIVORS’ HANDBOOK
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’