Young Yorkshire woman's fight for positivity as she faces isolation of cancer treatment in a pandemic

There are many layers to isolation, which can be difficult to define. For Carly Boyle, it can feel like a life stalled in the slipstream, while others fly by.

Carly Boyle, now 20, was diagnosed with liver cancer last year and has been isolated since March as she undergoes treatment. Image: Tony Johnson

Diagnosed with a rare liver cancer last year, the 20-year-old from Barnsley started shielding in March while her chemotherapy was delayed.

For 10 months now, her life has moved in slow motion. Gone is the bucket list and holiday she had hoped for, and the admin job she had adored.

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Now, she leaves the house only to visit the supermarket, and for those rare hospital trips.

Carly Boyle, now 20, was diagnosed with liver cancer last year and has been isolated since March as she undergoes treatment. Image: Tony Johnson

With a support worker from the Teenage Cancer Trust, she has forged a link to someone who knows what she is going through, and with others her age. It means she does not feel so alone.

“People like me don’t have anybody around them that is the same age,” she said. “It does make it a bit harder.”

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Miss Boyle was diagnosed with a rare liver cancer in May last year. She had cried in her bathroom as she called 111, desperate for answers. After a series of tests, doctors confirmed it was cancer.

Carly Boyle, now 20, was diagnosed with liver cancer last year and has been isolated since March as she undergoes treatment. Image: Tony Johnson

“I said to myself there wasn’t anything I could do to change the diagnosis,” she recalled. “I couldn’t change it - but I could do what I always wanted to do.

“I made myself a ‘realistic’ bucket list. It wasn’t trips to the Caribbean - I went to Cleethorpes to go on the arcades.

“I wanted to make memories that would last forever.

“I planned to do more this year. I didn’t see the point in making a list though, I knew it would upset me that I couldn’t do it.”

Delays

Miss Boyle began immunotherapy treatment in London before being moved to the Teenage Cancer Trust unit at Weston Park, Sheffield, for chemotherapy. With bright, airy wards, she said, it did not feel like being in hospital.

Then her chemotherapy was delayed in March, as she went into shielding. A cancer nurse comes to her home once a week to do blood tests, staying for a cup of tea.

The Teenage Cancer Trust support worker kept in touch over lockdown via Zoom, hosting quizzes and get-togethers, calling and texting and sending craft bags to keep her busy.

When her chemotherapy began again in August, Miss Boyle was cautious, worried about trips to hospital, but the support worker is there, in personal protective equipment.

“We speak on the phone a lot, but it’s just amazing to see her,” said Miss Boyle. “She’s amazing, it makes a massive difference. She always focuses on the positives.”

Filling empty hours

Miss Boyle has started a course with the Open University, to fill suddenly empty hours. She has begun what she describes as a ‘diamond painting’, crafting ‘sticky pictures’.

“I don’t ‘have’ to shield now, but I don’t like going out much,” she said. “It worries me. I shop for food, then stay in.

“It is a bit hard. When the tiers change, I see more people going out. I am stuck at home. It feels like you’re isolated, away from everybody. It will be the same with Christmas. I can’t risk it.

“I haven’t seen my dad in ages, I haven’t seen my grandparents in ages,” she added. “It’s not that I haven’t got anybody - but I rely on my grandparents. Talking to them over the phone, well it isn’t the same.”

Impact

There are a myriad ways in which the pandemic has impacted upon those with cancer. Macmillan’s national support line, based in Shipley, saw a sudden surge in calls from March as anxieties rose.

That month alone, the cancer information nurse specialist team answered almost 4,500 calls, with up to 1,000 calls a week being about the pandemic.

“We’ve gone from receiving general calls around coronavirus, to calls about the impact on treatment, to sad, emotional calls about people dying in intensive care on their own and families having to arrange virtual funerals,” one nurse said.

It is estimated that some four in five people are, on average, £570 a month financially worse off as a result of their diagnosis.

Through March and April, the Macmillan Welfare Benefits team in Barnley awarded more than £143,000 in grants to people in Yorkshire, for support for things like heating and transport.

'Too late'

Jo Steels, from Hull, lost her husband, Andy, to lung cancer in August. In March, he had developed a chesty cough, but he had struggled to get an appointment with his GP.

On June 15, he had a telephone consultation and was referred for an emergency x-ray and CT scans. Then came a phone call from the GP. It was stage four lung cancer. Mr Steels died just six weeks later on August 4, aged 54.

“The medical professionals kept saying that if he’d got here quicker there would’ve been more that they could do to stop the tumour spreading,” said Mrs Steels. “He was too poorly for chemotherapy, the cancer had spread too far.”

Mrs Steels has said she wanted to maintain a positive state of mind through fundraising.

“Andy and I were always ‘go-to people’; we were fixers,” she said, having since raised thousands for Macmillan Cancer Support in his memory.

Campaigns

Miss Boyle, meanwhile, is backing a new appeal from the Teenage Cancer Trust, which has seen its income fall by around a third.

It matters, she said. Last year, the charity had funded trips for her to meet with the support worker in a coffee shop, rather than the hospital.

The charity funded a Christmas dinner, with other young people going through treatment, which has meant she has had people to reach out to through these past months.

While that could not have happened this year regardless, she worries what the impact will be for the future, as more teenagers and young people face that diagnosis.

“People diagnosed recently might not have that to fall back on, that social aspect,” she said.

Positivity

Miss Boyle, readying for Christmas ahead, is determined to be positive. Dealing with a cancer diagnosis and treatment, while isolating in a pandemic, is not something she could have prepared for and she is pensive as she thinks about her outlook.

“It does get better,” she said. “I hope at some point I will be free of cancer, and can go back to work. Thinking positive, that’s what I’m trying to do.

"There is an end to this pandemic somehow.”