There’s no better expression of life’s uncertainty than cancer
This Mother’s Day, Celia Jones, whose mother was diagnosed with ovarian cancer, says we must speak up about this disease that is often detected too late
One evening last September, I thought I was going to suffocate on the train in plain sight of other commuters. Thumping sobs wracked my body and I fought to breathe through my tears. I was on my way back from a hospital, where I’d sat in a curtained-off section of the gynaecological ward and learnt that my mother, Annie Jones, had advanced ovarian cancer.
The diagnosis was sudden and unexpected. Just a week before, my fit and healthy 57-year-old mum drove herself to A&E with a suspected stomach bug, which is all too common with the disease. One quarter of all cases are only diagnosed when symptoms become acute. In my mother’s case, the tumour had advanced throughout her abdomen, spread through her womb and out from her ovaries to constrict her bowels.
There is perhaps no better expression of life’s uncertainties than cancer, no better illustration of the random, cruel nature of disease. In a letter to my mum, one friend wrote, “If only illness was determined by someone’s good nature, warmth, generosity and humour. I’d doubt you’d even get a common cold.”
But what I struggled to comprehend most was how she could be so unwell without any symptoms. Looking back, she said she needed the lavatory more than usual, and in the run-up to her A&E visit had felt sluggish and tired, but at 57 she didn’t think this too unusual. These seemingly quiet signs hadn’t been loud enough to alert her to such a critical condition.
An ageing population means ovarian cancer is on the rise in the UK, and incidences are expected to increase by 15 per cent by 2035: 7,300 women are diagnosed each year in the UK and right now a woman has a one in 50 chance of developing it in her lifetime. Yet unlike breast, bowel or cervical cancer, there is no official screening programme. Due to the 4,200 women who lose their lives to the disease every year, it’s been dubbed the “silent killer”. On average, less than half of women survive five years after diagnosis, compared to almost nine in 10 women with breast cancer.
The key symptoms to watch out for are persistent bloating, feeling full quickly or losing your appetite, pelvic and abdominal pain and needing to urinate more often or urgently, according to Target Ovarian Cancer, one of the four UK charities behind Ovarian Cancer Awareness Month this March. Extreme fatigue, weight loss, or change in bowel habits are also signs, but often dismissed as minor digestive complaints or put down to a natural part of ageing.
Like my mother, two thirds of women are diagnosed once the cancer has spread beyond their ovaries, which makes it harder to treat. However, Dr Susana Banerjee, consultant medical oncologist and research lead at The Royal Marsden NHS Foundation Trust, says: “The survival rate for women with ovarian cancer has definitely improved.”
In her 16 years as a specialist in gynaecological cancer, she has experienced first-hand the radical changes and new options such as drugs, targeted molecular-based therapies and specialised knives for women with the illness [see box, right] and was part of the team behind my mother’s treatment plan.
Recently, Dr Banerjee co-authored a study into the BRCA gene, the so-called “Jolie gene” (in 2013 the actress Angelina Jolie revealed she had the BRCA1 variant and had a
preventive double mastectomy and had her ovaries removed), which is the cause of one in six ovarian cancers.
Dr Banerjee’s research demonstrated the effectiveness of a new therapy for women with this mutation, which keeps the cancer progression-free for longer. She explains: “The explosion of research findings leading to practice-changing drugs has really happened in the last four years with ovarian cancer.”
After mum’s diagnosis, I battled for an explanation and was desperate to find answers, often when there were none. “What does this mean?” I would ask a nurse, out of my family’s earshot, and, “Is she going to die?” My dad joked my conversation style was becoming “a bit Paxman” after one particularly intense interrogation of a senior sister on the ward.
Away from the hospital, people would tell me I was strong as I parroted the latest updates. But at home, distanced from colleagues and family, panic attacks would strike, often fuelled by late-night googling binges where, hunched over my laptop, I researched more about this awful disease.
However, Caroline Geraghty, a cancer nurse specialist at Cancer Research UK, advises patients and their loved ones tone down their searching. “You’re never going to find something online that will give you a definitive answer to this disease,” she says.
Rather than statistics, the essential thing for patients to read up on is their individual treatment plan. The most common course of action for women with ovarian cancer is major surgery followed by chemotherapy.
Some women wish to share details with their family, like my mother, who, after a six-hour operation, immediately asked us if we wanted to see the scar that stretched from her chest to her pubic bone. She continues to update her vast network of friends after every appointment with her Whatsapp group, named “AJ’S army”.
Right now, my mum is doing well. She receives chemotherapy every three weeks and some days are brilliant – like when she went for an hour-long bike ride around Richmond Park, or managed to fend off nausea to assume her role as chief Christmas chef. But some days she is unable to leave the house.
On the bad days, when my mind starts to lose all perspective, I think of how my mum refuses to be defined by her sickness. I think of how far we’ve come since that terrible evening last September. And I resist the urge to search for a new update on her tumour markers, or what a low white blood cell count means.
Cancer is individual and indiscriminate, but my mother is strong. When I falter and cry, she nods. Where I crave answers, she understands sometimes there aren’t any. And as we approach Mother’s Day, I feel especially lucky to have my mum and I will never lose hope that she, or anyone else affected by ovarian cancer, will be here tomorrow.
Right now, a woman has a one in 50 chance of developing it in her lifetime