'I'm definitely living. I'm not dying yet.' As treatment improves, even incurable cancer will become a chronic illness

Cancer patient Sandy Sexton urges Scottish Government to count the number of women with metastatic breast cancer while they are alive, not just when they’re dead

Sandy flicked a stray hair from her face. “It’s not bad for an NHS wig,” she smiled. It was the first time I had seen her since 2019, and to be honest I had been slightly apprehensive before our Zoom call. I shouldn’t have been.

Sandy Sexton, 58, is one of the UK’s leading prosthetists/orthotists, and before the pandemic she had been developing a quality management system for Edinburgh charity 500 miles, which has a clinic in Lilongwe. She was brilliant at her job, mentoring Malawi technicians on how to transform pieces of brown plastic into life-changing limbs, and gently but firmly showing young children with cerebral palsy how to move with the new brace giving strength to their weakened bodies.

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She jumped on the back of a bicycle taxi every morning to get to the clinic, and in the evenings she spent her spare time drafting a technical manual. She was a force of nature. She still is, but now she is focusing her energies on coping with incurable cancer.

In October last year, after 18 months of crippling back pain, Sandy was diagnosed with metastatic breast cancer. The disease, in her case HER2 breast cancer, has spread throughout her skeleton.

She lives in constant pain. “I am on mega painkillers,” she explains. She has lost more than four inches in height, after six vertebrae crumbled. “I am very short now,” she laughs. And she spent Hogmanay in Wishaw General Hospital getting pins in both her femurs to stop them from collapsing.

“The cancer is rampant, it’s even in my skull,” she explains as a matter of fact – she is a medical professional after all. “My bones look like lace. They just get thinner. But amazingly, I'm getting a treatment which grows the bones back. I get zoledronic acid every 12 weeks, and I chew big calcium tablets every day. Amazing, really.”

But not as amazing as Sandy. She may be in intense pain, coping with a deadly disease that could at any time attack her vital organs such as her liver, brain or lungs. The chemotherapy she receives has affected her heart valve, so that her legs are filled with fluid and her breathing laboured. “And I am still getting hot flushes from the menopause,” she adds. But she continues to work part-time as the education officer for the British Association of Prosthetists and Orthotists.

Sandy Sexton with her daughter Catherine, who is getting married in JulySandy Sexton with her daughter Catherine, who is getting married in July
Sandy Sexton with her daughter Catherine, who is getting married in July

Now she is campaigning on behalf of women across Scotland with secondary breast cancer. “I support the Met Up UK charity,” she explains. “Some women, like me, get ‘de novo’ breast cancer, which means it is only diagnosed after it has spread. And I am one of those rare women who didn’t have it in my breasts first. Basically, I have breast cancer in my bones.”

But despite huge advances in the treatment of breast cancer, around 30 per cent of women will go on to have secondary tumours. Met Up UK is promoting a set of helpful ‘red flag’ infographics which show patients and GPs where the disease is likely to return. NHS England has adopted the simple but life-saving system, but it’s not yet used in Scotland.

“I would love to see the ‘red flag’ infographics adopted here,” says Sandy. “When I meet women who have got stage 1, 2 or 3 cancer, they talk about cure which is fabulous, but some of them will go on to develop stage 4 – which I have. So they need to be aware of the ‘red flags’ in different parts of their body.”

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Sandy has another plea for the Scottish Government, whose new cancer strategy is about to be published. “I want us – women with metastatic breast cancer – to be counted when we are alive. At the moment, they only count us when we are dead. We'd quite like them to have accurate data about us when we’re alive.”

So would leading charity Breast Cancer Now. Simon Vincent, director of research, support and influencing at the charity, told me that while they are delighted that England, Wales and Northern Ireland have all committed to data collection, the Scottish Government has yet to agree. “The cancer strategy presents the perfect opportunity to make a secondary breast cancer audit happen and improve the data collected so all women in the UK living with this devastating disease can be guaranteed the best possible treatment, care and support,” he says.

A few weeks ago, Sandy won the Sepp Heim Award for her significant contribution to the development of mobility device services in low-income countries. She wasn’t able to attend the award ceremony in Mexico, but Beth Sheehan, her close friend and colleague, who also works for 500 miles, collected it on her behalf. “I was really, really delighted, even though I cried watching the ceremony online, because I was supposed to be there in Mexico, but of course I can’t travel just now.”

But she will be at her daughter Catherine’s wedding in July, and she is determined to dance at it. “I’ve got a zimmer frame for the shower and I’ve got sticks to walk with. I also have a wheelchair. I can dance in that if I have to. I will dance with my sticks too. Whatever happens, I am going to dance at the wedding.” Knowing Sandy she will, and with more energy and style than any of the other guests.

Half of us will develop some form of cancer in our lifetime. As treatment improves, even incurable cancer, such as the type Sandy has, will become a chronic illness, something to live with rather than die from. “I am busy living with this,” says Sandy. “I'm definitely living. I'm not dying yet.” And knowing her, the next time I see her in real life, it may well be on the back of a bicycle taxi in downtown Lilongwe.

For advice on living with breast cancer see www.breastcancernow.org and www.metupuk.org.uk



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