YEAR CANCERVERSARY
Four women diagnosed with stage four cancer a DECADE ago but living healthily today — and, as the Mail reported yesterday, medical advances mean there will be far more like them. No wonder they’re sharing the joy of their ...
The party’s theme was ‘cats around the world’, and guests, clad in slinky costumes, sipped cocktails and danced the night away.
If it sounds like an unconventional way to mark an anniversary, perhaps that’s because, as yet, there is no traditional way to mark a significant ‘cancer-versary’.
As the party’s host, Kris hallenga, put it in a tweet on February 19: ‘Ten years ago today I was diagnosed with stage four, incurable, secondary, metastatic breast cancer and I AM NOT DeAD. In fact, I have never felt so un-dead.’
Kris, 33, is a kind of modern- day pioneer. Stage four cancer — which has spread to another organ and is incurable — used to be viewed as a death sentence, often a swift one.
Yet, thanks to continual improvements in treatments, she can now focus on living her life, rather than the ending of it.
experts hope soon this will be the case for more and more people like Kris, thanks in part to a major, £75 million development programme announced yesterday by British scientists at the Institute of Cancer Research.
They hope to develop new treatments that will allow doctors to ‘manage’ all types of the disease, slowing their growth to the point that they never prove fatal — and vastly improving patients’ quality of life.
That’s certainly in line with Kris’s approach. With the attitude, ‘I want to do things because I’m alive and not because I’m dying’, over the past decade Kris has launched a charity, travelled, given talks to hundreds of people including Prince harry, and continues to campaign for women to be more breast aware.
‘Stories of cancer are always about survival or death, never this in-between stage of actually just living with it,’ Kris says. ‘I want to take away the fear.
‘When I was diagnosed, I would have really appreciated someone talking about how she’d had cancer for ten years. It would have given me so much hope.’
Latest research highlights the changing nature of life with the disease. According to a 2017 report from Macmillan Cancer Support and Public health england, at least 17,000 people have survived for two years or more after being diagnosed with stage four cancer.
More than one in four women in england diagnosed with stage four breast cancer now survives for five years or more, while data from the U.S. suggests that about one in eight survives for at least ten years.
Professor Paul Workman, who heads the Institute of Cancer Research, suggested its research programme, which will employ 300 scientists, could roll out a new generation of cancer treatments in the NhS within a decade, after its spring 2020 launch. ‘We hope to enable survival to the point where cancer patients succumb to some other disease,’ he said. ‘This is an effective cure.’
aLReADY,
the reality of living with incurable cancer has been transformed for many patients. ‘Advances in treatment and care mean people can live for several years with cancer that cannot be cured, but can be treated to slow the progression of the disease or alleviate symptoms and extend their life,’ says Adrienne Betteley, Macmillan specialist adviser for end-of-life care.
One reason Kris believes she has thrived is that her surgeon never gave her a formal prognosis (often two to three years in her situation). ‘I’m so grateful he never put a limit on my life,’ she says. ‘Instead, he gave me the attitude that anything was possible.
‘You hear so many stories of people who have been given six months and they die at six months. I think that plants a seed in your mind, one I really didn’t need.’
Still, coming to terms with incurable cancer, chemotherapy and a mastectomy is tough for anyone — never mind a previously carefree young woman.
Kris first found a lump in her left breast while on holiday with her mother and twin sister, but a doctor told her it must be ‘hormonal’. She then moved abroad for work. When she returned six months later, it was supposed to be a temporary visit. But suffering pain in her breast, she saw the doctor again and her mother insisted she was referred to a breast clinic. By then, her tumour was the size of an avocado; scans revealed it had spread to her spine.
Many people confronted with a health crisis make a ‘bucket list’ of adventures. Instead, Kris decided if she wanted to do something, she would ‘just go and do it’.
For her, that included setting up a charity. She is extremely close to
her twin sister, Maren, who she describes as ‘my no bull**** carer’. (‘I don’t need someone wiping my brow, but I need someone who makes sure I eat and picks me up when I need it.’)
It was a conversation between them, during chemotherapy to shrink Kris’s tumour for surgery, that led to the charity CoppaFeel!, which aims to educate young women about breast cancer and how to stay safe.
The charity, which now has 13 staff, is going from strength to strength. Tags in Tesco bras encourage women to check their breasts, a team of ‘Boobettes’ visit schools and workplaces to tell women about breast health, and a collaboration with Superdrug will see specially trained nurses in 56 stores. The sisters regularly hear about early cancer diagnoses that came about due to their campaigning and Kris is always planning new initiatives. Of course, some days are hard: ‘The bad days are the in-between-scan days and the not-knowing-what-treatment-to-do-next days. Some days you do want to sack it all off and crawl into bed, but we all have those days, don’t we?’
Kris now has cancer in her brain, bones and liver; when a treatment stops working, she and her doctors find a new plan together.
‘Thankfully I’m what they call a serial responder, so I often respond well to new treatments,’ she says.
One treatment she tried recently is a drug called Palbociclib.
‘It was barely in the test tube
when I was first diagnosed,’ she says. ‘Although the drug only worked for about nine months on me, there were few side- effects, so I have definitely benefited from recent developments in treatment.’
She is making the most of the healthy time she has as a result. Three years ago, she left London for Cornwall, where she goes paddle-boarding and wild swimming.
Her work means she often meets other long-term stage four pioneers, including Siobhan Lett, 45. Siobhan, from Ipswich, Suffolk, was diagnosed with a rare form of the disease nearly 11 years ago — few with fibrolamellar liver cancer survive beyond five years. Siobhan reels off a few of the many places she’s visited since then: Budapest, Iceland, Mexico, Cape Verde, Paris, Spain and New York. And rather than cutting back on work, she’s doing more. After years of being part-time while raising her two daughters, she recently took a full-time job as an account manager with an energy company. A single mother, her daughters were 14 and ten when she became ill. She says she doesn’t know how she coped with the shock of diagnosis and multiple surgeries while caring for her girls. Yet, like Kris, she knows it is more than possible to have stage four cancer and feel well and happy.
Today, tiredness is the only symptom she lives with daily. While she’s had surgery to remove tumours, including some in lymph nodes near her pancreas, she takes no long-term cancer medication.
Generally, she doesn’t sweat the small stuff as before — and she’s less likely to suffer fools. ‘You find out who your friends really are when you have cancer,’ she says.
For Siobhan, like Kris, the worst part is the ‘terrible scanxiety’ she suffers in the weeks waiting for her six-monthly results.
For both women, years of living with cancer has taught them that it’s impossible to live every day like it’s your last: no- one can escape life’s routine, but there’s pleasure to be found in mundane tasks.
Kris says: ‘People think every day has to be amazing, but that is unsustainable as you still have to get up, you still have to make the breakfast, you probably still have to get the children off to school. Yes, you can appreciate how good it feels to be able to do all these things, but having that pressure to make each day count is silly.’
Cancer, though, is likely to have wider implications for family and relationships, however well you cope day to day.
While Siobhan’s cancer was found after she had her family and Kris says she never wanted children, for Sarah Sweet, 50, it has taken time to come to terms with not being a mother.
Eight years ago, she was diagnosed with breast cancer, aged 42, and two weeks later was told it had spread; tiny tumours in both lungs ‘lit up like a Christmas tree’ in the scans. She was warned her prognosis was probably six to 12 months.
Yet she is again proof ‘ you can survive and thrive with cancer’.
A key reason she is still here is the drug Herceptin, approved for NHS use 16 years ago.
‘It was a game- changer as it is effective against highly aggressive cancers like mine,’ she says. ‘Without it I would not be here today.’
She says at first it was administered with a two-and-a-half-hour infusion in hospital, but developments mean that for the past two years treatment has been a quick five-minute injection in her leg.
Sarah describes living with cancer as ‘ a glass-half-full sort of life’, finding pleasure in the little things — the beautiful countryside around her Devon home, swimming in the sea in summer or lunch and a gossip with a friend.
At the time of her diagnosis, the graphic designer and artist had been trying for a baby with partner Lee, but any hopes of a child ended immediately because the drugs necessary to keep her alive crashed her straight into early menopause.
She describes Lee, a builder, as ‘my rock’. Twelve years her junior, Sarah told him she would understand if he left her as she didn’t want to stand in the way of him having a family. Lee insisted he wasn’t going anywhere.
Their relationship has been tested in many ways. Before surgery, Sarah had six months of aggressive chemo to shrink her tumour and says her menopause symptoms have been ‘horrific’. Because her cancer is oestrogen-receptive she can’t take HRT to alleviate them.
MEANWHILE,
menopausal weight gain and a double mastectomy left Sarah feeling self-conscious. Cancer medication and the menopause aren’t great for libido either, she says, but ‘with time and patience and care’, intimacy is still possible.
Kris knows the strain cancer puts on relationships. Currently single, she jokes she’s ‘not getting many offers’ but it’s mostly by choice.
‘The first year I was diagnosed I met someone. I had no hair or anything and I thought if he can fall in love with me when I’m at my worst then he must be a keeper… and then we broke up four years later.
‘You’re going through some really difficult times together that aren’t normal for early 20s’ relationships, and it took its toll.
‘Now I’m in a place where I’ve seen so many boyfriends and husbands left behind by this disease, I’ve witnessed the heartache, and I don’t want to do that to someone.
‘And I’m actually happy not to be with anyone. I think if I wasn’t I’d probably do something about it.’
Another distressing downside of being a pioneer is that many others are lost along the way.
Kris says she has lost ‘countless’ friends to cancer and that it ‘never gets easier’. Sarah adds poignantly that of the 25 in her initial support group, she is the only one left.
She has ‘survivor guilt’ but says: ‘Whenever I take anything for granted I remember these women and appreciate my life even more.’
Kris says that even after ten years people still find it awkward when faced with someone with cancer.
‘They still don’t know what to say,’ Kris says. ‘What surprises me is how many people still ask about my prognosis and what I was told.
‘Sometimes I return the question and ask them: “What’s yours?”, because none of us know when we’re going to die.’
The fragility of life is something she knows first-hand, her father having died suddenly from a heart attack when she was 20.
‘Death is something we all need to talk about more,’ she says. She’s very clear about her own plans and doesn’t want a funeral as ‘they’re always horrendous for the people who have to go’.
But she adds: ‘After ten years you think every day is a bonus.
‘No matter what happens, I’m OK now. I’m not ready to go, and I still want to prove every doctor in the world wrong, but at the same time I’m in such a good place and I feel really good about who I am and what I’ve done.’
Words we all hope to be able to say, whatever our life expectancy.
To find out about the signs and symptoms of breast cancer, and for Coppafeel! information, head to coppafeel.org. Text the word ‘ boobs’ to 70300 to receive a free monthly reminder text to check your breasts. Standard network rates apply for initial text, but all reminders are free.
NEW DAWN IN CANCER WAR The front page of yesterday’s Mail