At the start of 2020, as coronavirus began to bubble across the globe, Connie Johncock had just stopped trialling a cancer drug.
Until then, it had been successful in keeping the disease that had already robbed her of a breast and invaded her liver from spreading.
First diagnosed with breast cancer in 2011 when she was just 22, Connie had signed up for new treatment trials in 2018. After two years doing them, the side-effects were massively impacting her mobility and energy levels, so her medical team suggested she take a break from treatment.
It was a chance for her to recover, they said, and then she could come back six weeks later for blood tests.
‘Naively, we thought Covid would have been done by the time I was done having a break,’ remembers Connie, with a wry laugh.
As coronavirus began to tear through hospitals up and down the UK, it threw everything and everyone into upheaval, none more so than those impacted by cancer.
With nearly 50,000 fewer cancer diagnoses made in the UK during the pandemic, up to 740,000 potential cancer cases ‘missed’ and over 30,000 patients having treatments delayed, it’s no exaggeration that the NHS has two pandemic on its hands.
However, although lockdown exacerbated the issue, the truth is that the UK’s battle against cancer was already at breaking point.
Since 2015 the NHS has been consistently failing to meet the 62-day Cancer Waiting Time target for patients to begin treatment following an urgent GP cancer referral. Not only has the target been missed, but it has been in continual decline since 2017.
In a bid to combat this crisis, earlier this month – on 4 February, World Cancer Day – Health Secretary Sajid Javid declared a ‘war on cancer’, and spoke of a 10-year plan to improve the dismal rates, which is expected to launch this summer.
‘At the start of the pandemic, many cancer patients saw their treatment paused, disrupted or changed while doctors worked out how to give treatment safely,’ explains Martin Ledwick, Head Information Nurse at Cancer Research UK, who carried out a survey of cancer patients in 2021.
He explains that their report findings revealed that one in three had seen some disruption to treatment and that the majority felt more anxious and frustrated.
‘We had an increase in calls to our helpline from people who were understandably frightened,’ adds Martin.
He also tells Metro.co.uk that not only did patients struggle with longer wait times, cancellations, and appointment changes, but they also felt increasingly lonely, having to isolate due to their compromised immune systems.
‘Patients also raised concerns about shielding – with some people having to limit contact with others in their households who needed to continue to go out to work,’ says Martin. ‘And once vaccinations were rolled out, many told us they were frightened that with restrictions easing, other people around them might act in a way that could put them at risk.’
For Connie, who is living with secondary cancer, the chaos caused by the pandemic had a huge impact on her treatment options.
After taking the break in her trial drug, a scan revealed that her tumours had grown significantly. ‘But due to Covid, there were no clinical trials open because all the research had been moved to manage the pandemic,’ she explains.
‘I had two choices. Wait until the summer to see what was happening with trials – but then there was a risk that the tumours could have progressed more – or I could start the NHS’s standard of care treatment, combining a type of chemotherapy with a targeted drug called Netatinib.’
Connie went for the latter, clinging onto the hope that the coronavirus crisis would have passed by the time her treatment finished and she could get back to using the clinical trial drug that had stemmed her cancer from progressing.
However, sadly her drug combination didn’t work and a scan revealed that her breast cancer had now spread to her liver, bones, lungs, lymph nodes, and lungs.
‘I was heartbroken and frustrated,’ recalls Connie. ‘I felt fearful for the future and betrayed by the whole system.’
Such a massive spread of cancer meant Connie was unfortunately no longer eligible to meet the criterion for clinical trials and had to start mainstream chemotherapy immediately. ‘It was exhausting, I had no quality of life,’ she says. ‘I couldn’t even walk up the stairs. I was touch and go and I didn’t think I’d see my 30th birthday. The year just felt like a slap in the face.’
Not only did her physical health decline, but Connie’s mental health also took a knock from the forced shielding.
‘I was faced with two evils – cancer or coronavirus, both with cruel, undignified ends – so which one should I pick?’
Connie says she battled to keep her mind and body strong while cooped up indoors, instead of enjoying the life before her. ‘I couldn’t make memories with loved ones, couldn’t go away, couldn’t hug my mum…
‘There will always be a consequence to me using those standard of care options during the coronavirus crisis,’ Connie says, with a twinge of regret. ‘If we hadn’t stopped the clinical trials at the start, I probably wouldn’t have had to go through what I did. It all just feels like a muddled dream now.’
While she would normally consider herself a positive-thinker, Connie feels the experience has soured her. ‘There are so many hurdles and limitations when you are stage four,’ she says, admitting that she feels she is often shrugged off because her cancer is so far advanced.
However, Connie remains determined to fight her incurable diagnosis and tries to find every silver lining in her journey. ‘It’s hard to, when you’re knackered though,’ she adds.
Another cancer sector hit hard by the pandemic, are the charities that support those touched by the disease.
Two of the largest charities, MacMillan Cancer Support and Cancer Research UK, have both reported suffering from reduced giving and fundraising opportunities as a result of the pandemic.
‘Almost every way we fund our research has been impacted by the pandemic,’ says Cancer Research UK’s Martin Ledwick. ‘At points, we had to temporarily close our shops and cancel most of our events and volunteering activities – which had a significant impact on our fundraising ability. As a result, we’ve had to make some difficult decisions – including sadly cutting the amount we spend on research.’
Meanwhile GPs in primary care are also dealing with the fallout, having to shift to remote consultations over phone, email and video, rather than one-to-one appointments. ‘But some GPs have said that it can be harder to properly assess patients with some symptoms remotely, and there’s a risk that people who aren’t confident with technology or have less access to technology,’ says Martin.
‘In hospitals, we have seen significant staff redeployment during peaks of the virus. Along with important infection control measures to reduce the spread of coronavirus in hospitals, this has limited capacity to provide certain aspects of cancer care at points through the pandemic.’
When Peter Tomlinson’s wife Alison saw her oncologist in March 2020, she was advised not to visit the hospital for the foreseeable, as her cancer was stable. She was told that the risk of catching Covid was too high and instead was given a three month break from further treatment.
When she was initially diagnosed with pancreatic cancer in 2015, Alison’s treatment was successful – but then the disease returned in 2019.
‘She accepted the fact that this was now a terminal cancer,’ Peter recalls. ‘With stage four pancreatic cancer all they could do was give her palliative treatment that was life-prolonging.’
Alison started the first of her 12 chemotherapy treatments in December, but as it made her incredibly ill, doctors gave her a three-week break before starting the second round of chemo and prescribed steroids and another drug to counteract the side-effects of the treatment moving forward.
After six treatments, a scan revealed there had been hardly any movement of Alison’s cancer.
‘The consultant was thrilled to bits,’ Peter remembers. It was then that he suggested she steer clear of treatments to reduce the risk of her catching Covid.
‘The doctors said they had to protect her and the only way to do that was by her not coming to the hospital,’ explains Peter. ‘The chemotherapy department was on the 12th floor, and they couldn’t guarantee her safety because she’d be in contact with people who had Covid.
‘We were being told by media, medical reports, and nightly press conferences that coronavirus was dreadful. We had to go along with what the experts were telling us.’
After five weeks without chemotherapy, Alison started to experience symptoms that triggered her consultant to schedule a scan. ‘The cancer had advanced significantly,’ recalls Peter.
Although Alison went back to the hospital to complete six more chemo sessions, with little progress at abating the cancer, she decided to enjoy her last days with Peter, her three sons, and their friends.
‘She just wanted to live in peace,’ Peter recalls. He describes her last days in September 2021, having gin and tonics in the garden with friends, the sun warming everyone’s spirits. ‘You wouldn’t have known there was a problem,’ he adds tearfully.
Alison died on 20 October 2020. ‘I can’t blame anyone for what happened,’ says Peter. ‘From what I remember the country was in a total state of panic and Ali was certainly very frightened of this new virus. She felt very vulnerable at this time in her life and being a doctor she knew how pernicious it could be.
‘It is only in hindsight that I now realise that it could have been handled better – although she never said anything about wishing her treatment hadn’t been interrupted. Ali wasn’t going to live, but she may have had Christmas. I reckon she could have lasted quite some time. But she didn’t. And I can’t bring her back.’
‘Because of Covid, I had chemo at home alone’
In May 2020, Krista Jay was diagnosed with a rare form of myeloma cancer. Due to lockdown, she not only received the devastating news over the phone, but then also had to go through treatment at home. She says:
‘It’s hard to fully explain what your mind and body are going through, in a time when you’re fighting to stay alive in the midst of a global crisis. The ground felt like it was crumbling beneath me.
‘Plus, there were some people in my life who couldn’t bring themselves to see me in that vulnerable state. My partner left me, one month after my diagnosis. I was living in shared accommodation with housemates. It’s a time when I needed my support network, but a large part of that fell away.
I’ve always prided myself on being very independent and able to look after myself, but I’d got to the point where I was feeling really vulnerable and in need of help and support from others. The dynamics of relationships really change when you get diagnosed with cancer…’
To read more of Krista’s story, click here.
A year after we were plunged into our first of many lockdowns, in March 2021 over 40 cancer charities came together to give a statement on the crisis they were facing due to the pandemic.
Under the title of One Cancer Voice, the likes of CoppaFeel! Leukaemia Care, Target Ovarian Cancer and the Teenage Cancer Trust, urged government leaders and NHS leaders to tackle not only the backlog caused by Covid, but also the issues occurring beforehand – asking for faster diagnosis, better funding and a clear investment in staff training.
Meanwhile, many of those charities have spent the last two years frantically adapting to a life lived remotely.
‘We quickly responded by improving our support line and our website, developing new services such as our telephone buddies and setting up a £12.5m NHS fund to help meet the immediate needs arising from the pandemic,’ explains Minesh Patel, Head of Policy at Macmillan Cancer Support. ‘We also set up a Covid hub on our website; the site was visited by 4.2m people in 2020.
Yet, Minesh admits that despite the ‘fantastic efforts’ of the charity’s fundraising teams and generosity of the public, it saw a decrease to income in 2020.
It’s something Cancer Research UK also experienced and now predict a loss of around £300million overall by 2023/4. The charity also adds that their ambition of improving cancer survival to 3 in 4 people by 2034, has since been severely compromised by the impact coronavirus has had on their research.
Heidi Loughlin was all set for her breast reconstruction in May 2020, with everything being meticulously planned.
Having been diagnosed with inflammatory breast cancer, a rare and aggressive form of the disease, when she was pregnant with her third child in 2015, she forwent any chemotherapy for the duration of her pregnancy.
Tragically her baby girl died at only eight days old after catching an infection in hospital. ‘I then found out my cancer had spread and that it was now stage four and incurable,’ Heidi remembers.
Despite chemotherapy and a right breast mastectomy, the cancer was in her lungs, skin, and blood vessels. ‘I was living on extremely borrowed time,’ she says.
Since then, Heidi has been on a palliative care treatment, involving a combination of chemotherapy and immunotherapy, and in 2019, her team started to talk about the possibility of having a breast reconstruction.
‘With stage four inflammatory breast cancer, reconstruction is unheard of,’ Heidi says. ‘They don’t do it because the person is expected to be dead. There is also a slight risk of making the cancer recur.’
However, since Heidi was doing so well, she was offered the procedure and with it set to take place in May 2020, she scheduled her chemo treatments, turned down freelance work, and arranged for childcare around the operation date.
‘I remember the doctor saying to me I was top priority because of my life expectancy, so the chances of it being cancelled was extremely small,’ Heidi recalls. But with hospitals being inundated with Covid patients, and surgeons operating on the most life-threatening cases, her surgery did end up being cancelled and rescheduled several times.
‘I was really disappointed, but I understood,’ she admits. ‘It was frustrating, but I had already gone four and a half years with one boob, another year wasn’t going to kill me.’
In addition to her delayed operation, Heidi’s regular chemotherapy treatment was moved into a dental hospital in Bristol, so the oncology ward could prioritise Covid patients.
Recalling the sterile space that was organised to receive patients, Heidi laughs as she says, ‘You had your own little area where you could put your legs up in the dentist chair. It was really comfortable! There was even a little sink next to you. Like being in first class on a plane. Everyone seemed happier, calmer.’
Although Heidi, who tweets under @storminatitcup, received several letters advising her to shield, she weighed up the risks and chose to go outside for walks with her children and horse when she was allowed. ‘I didn’t really have Covid fear,’ she remembers. ‘Otherwise, I would have just sat in the house for a year and I know my emotional wellbeing would have been hugely compromised with that. Having good mental health throughout cancer is super important so I took measured, minimised risks.’
Finally, in July 2021, Heidi had her breast reconstruction. ‘In so many ways, cancer has taken a lot from me, but it’s given me an awful lot back as well,’ says the 39-year-old. ‘It’s given me the ability to see what really is important in life, but also to give positivity to loads of other people newly diagnosed. I felt amazing with just one boob, but I’m even further away from my diagnosis now, one more step to normal.’
With the UK also taking steps to get back to ‘normal’ with all coronavirus restrictions being lifted this week, cancer patients will continue to face a life-threatening battle in more ways than one way.
‘Recent NHS England data confirms the huge challenge still facing the NHS, with performance against cancer waiting times going from bad to worse over the last year,’ says Macmillan Cancer Support’s Minesh Patel.
‘By 2030, we anticipate around 3.3million people will be living with cancer in England. It will have a devastating impact on many people with cancer who are experiencing agonising delays and risk a worse prognosis.
‘We have been sounding the alarm for a long time now about the desperate need for additional cancer professionals to care for the growing numbers of people living with cancer, and the importance of good care and support,’ he adds.
‘‘Improving the experience of patients must be at the heart of the Government’s upcoming 10-year Cancer Plan.’
Do you have a story you’d like to share? Get in touch by emailing Claie.Wilson@metro.co.uk
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