By Charlotte Gill for The Mail on Sunday
22:18 04 Nov 2023, updated 02:03 05 Nov 2023
- Katie wanted to focus on ‘building memories’ with her daughter Freya, 13
- She plans to have ashes put into a firework and wrote letters to Freya to read
When Katie Barson was given the devastating news her breast cancer had returned late last year – that it had spread throughout her body, that it was incurable and she may not have long to live – she made what she calls ‘the hardest decision of my life’.
The single mother, now 36, told her medical team that she wanted no further treatment.
Having first been diagnosed with an aggressive, hard-to-treat form of the disease in March 2020, Katie, from Mansfield in Nottinghamshire, struggled through surgery, radiotherapy and chemotherapy which triggered an extremely rare immune system reaction.
But despite the agony of florid skin rashes, muscle weakness and swelling all over her body, it worked, and in December 2021, Katie, an assistant practitioner at a GP surgery, was told she was clear of cancer.
Writing at the time on her Instagram account, where she shared intimate details of her ordeal, she said: ‘It’s been an emotional rollercoaster. I’ve gone from relief to being ecstatic, to crying, fear, anger, anxiety, worry and guilt – for actually managing to get this far when so many don’t.
‘But it’s as if the heaviest weight in the world has been lifted for now.’
However, the relief wasn’t to last. After experiencing pain in her shoulder and chest in September last year, tests revealed her cancer was back with a vengeance – there was no cure and few treatment options.
And so, in November 2022, she made a remarkable choice to ‘do life – without the side effects of chemo that crippled me last time’.
Instead she would focus on ‘building memories’ with her 13-year-old daughter, Freya, and spend what time she had left doing things she’d always wanted to.
Treasured moments in the year since then have included ‘a billion adventures’ with Freya, ice-skating at Christmas on a trip to Disneyland Paris as well as fulfilling an ambition to sky-dive. ‘I smiled the whole way down – from leaving the ground to landing, the whole thing was just incredible,’ said Katie.
She also completed a gruelling charity mud-run just weeks after suffering a collapsed lung – a complication of her rapidly progressing cancer.
‘I wasn’t letting my sponsors down, so I did it,’ she said. ‘I’ve never been more proud of myself. Admittedly I walked, but I attempted each and every obstacle – as I always do in life. Freya and seven of my friends and family joined me, and it was one of the funniest days I’d had in a long time.’
Last week, before Katie went into hospice care as she nears the end, she told The Mail on Sunday: ‘When I was on chemo, I was so unwell and I wasn’t myself at all.
‘Freya would say to me, “You don’t look or smell like my mummy.” I didn’t want my daughter’s lasting memory of me to be of someone she didn’t recognise.
‘When you’re diagnosed you feel like you have to do what you’re told to. But you will know what is right for your family, and I knew this was the right decision.
‘I wanted to be able to live while I was well, and I knew being on treatment wouldn’t give me the quality of life to be able to do things with my daughter.’
Katie’s story is just one of a number of poignant accounts that feature in a new YouTube film from the charity Breast Cancer Now. Entitled Stories Of Secondary, the aim is to shed light on secondary breast cancer – when the disease spreads, making it incurable.
There is an estimated 61,000 patients living with secondary breast cancer in the UK, and approximately 11,500 die each year. In five per cent of women, the cancer has spread by the time it has been diagnosed.
Treatment can delay progression but ultimately cannot halt the march of the disease.
Highlighting secondary breast cancer is something Katie is passionate about. Referring to the overall positive picture for treatment, which means for all forms of breast cancer 85 per cent of women now survive the disease for five years or more, she said: ‘Often breast cancer is referred to as a “good cancer”. But no cancers are good, are they?’
Katie has triple-negative breast cancer, which accounts for 15 per cent of cases. These cancers don’t respond to normal hormonal cancer treatments and, in her case, newer immunotherapy drugs were ineffective, too.
Alongside ticking off her bucket list, she was also strong enough to plan for the future.
‘I’ve written cards for important dates or important things in Freya’s life,’ Katie explained. ‘Her 16th, 18th and 21st birthdays, for passing her driving test, for passing exams, going to uni, first home, first baby, engagement, wedding day – I’m putting my words down for her because I can’t give her me.
‘Planning my own funeral was hard but it was also therapeutic. It meant that I was taking the pressure off my family.
‘Knowing that the first funeral Freya is going to is her mum’s… I can’t imagine how hard that will be. I wanted a cremation because there’s no way she would manage a church service and then a burial. It’s too much in a long day.’
She added: ‘And then, with my ashes, I thought, I don’t want to be sat on a mantelpiece for the next 30 years.
‘So I’ve chosen for them to be put in a firework so they can go off and Freya knows I’m in the sky – wherever she is in the world.
‘I don’t want her to feel she’s tied to one place because that’s where I am, or that she has to take care of a gravestone.
‘She can travel the world because I am wherever she wants me to be. Everywhere has fireworks, so I want her to see fireworks and think of her mum.
‘You can’t cry if you’re looking at the sky. It’s beautiful.’
The film also features Jacqueline Tolfree, 57, a mother-of-four from Gloucestershire.
On the moment she was told her breast cancer had returned and was incurable, she said: ‘I remember sitting in my car, hands on the steering wheel, screaming. I was so consumed with anger and frustration.
‘I didn’t want to hurt people, I didn’t want to say how I felt. I thought, “I’m going to park and I’m going to scream.” It felt lovely.’
Both Jacqueline’s mother and grandmother had had breast cancer that had been successfully treated, so the news that hers was terminal was a huge blow.
‘It was like a horror. I felt like I wasn’t in my body. The oncologist wasn’t telling me, he was telling someone else. Sometimes I get so terrified that I have to hold my husband’s hand in bed, as I wake overwhelmed and need reassurance.’
Yet, defiantly, Jacqueline added: ‘I’m going to live my life as fully as I can and I’m going to embrace every opportunity I have.’
She has even written and directed a play, titled Glass Cage, about her experiences with breast cancer, explaining it helped her ‘express feelings, emotions and thoughts’.
‘The reason for its name was because I felt exposed and yet trapped with nowhere to hide. It was about my primary breast cancer. It was on for two nights at our local arts centre and sold out.
She has also penned a short story on feelings of loss.
She added: ‘Life is very precious, and it’s a shame I had to reach this stage to realise it and that I didn’t think of my health so much before.’
Ruth Warden, 55, from West Yorkshire, appears in Breast Cancer Now’s film, too. She has lobular breast cancer, which can sometimes be harder to spot as it doesn’t always form a firm lump.
Indeed, Ruth was healthy, active and busy and had no idea she was ill until she went for a routine mammogram at the age of 50. A mastectomy for primary breast cancer followed, but scans soon revealed the cancer had spread to her spine, liver and bones.
Speaking about the day she found out, Ruth said: ‘I had to get out of [the hospital] before collapsing.
‘It was pouring down with rain. I sobbed all the way home and told my husband, both of my boys and the rest of my family. It’s just awful. You think your life’s been taken away from you, and it happens in an instant.’
Ruth’s husband and sons, aged 20 and 25, have supported her through her treatment, however the cancer has now spread to her brain, meaning she cannot drive. She added: ‘I live with it but I don’t want it to define me. I would love to run and be more active, but with limited energy I have to choose carefully how I spend it. So a busy day must be followed by rest.
‘It’s about learning to live with what is happening rather than railing against it. I won’t climb a huge hill, but Mam Tor or Glastonbury Tor are just as good.’
Rachael Franklin, Breast Cancer Now’s director of fundraising, communications and engagement, said: ‘There are thousands of women living with secondary breast cancer in the UK, yet their stories are often overlooked.
‘The experiences shared in this film by Katie, Jacqueline, Ruth and others give an intimate insight into the reality of living with secondary breast cancer, and how research is key to giving people who develop this devastating disease more time with their loved ones.’
The charity has channelled £5 million into secondary breast cancer research alongside funding studies into other types of breast cancer. But it says more cash is needed to realise its ambition that, by 2050, everyone diagnosed with breast cancer lives – and is supported to do so well.
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
