Shortly before Jess Brady died, aged 27, from advanced adenocarcinoma – an aggressive cancer that had only been diagnosed three weeks before – she showed the journals she had kept since she was a teenager to her mum, Andrea.
Filled with Jess’s neat handwriting, her detailed future plans included a trip to Japan and, most poignantly, a list of 30 things that she wanted to do before she reached the age of 30.
Andrea says: ‘She wrote about the minutiae of her life – her savings, her career progression. She’d done really well: she was a radio frequency engineer, helping design satellites for an aerospace company.
‘But her hopes and dreams were very simple. She wanted to buy her own home with her boyfriend, Alex; she wanted a Persian cat and, really sadly, she wanted to have a baby.’
Sitting with Andrea, 57, a primary teacher, and Jess’s dad Simon, 61, a site manager at the same school, in their home in Hertfordshire, the story of Jess’s declining health over the summer of 2020, and the missed opportunities to diagnose what was wrong with their precious girl – she had 20 consultations with four different GPs over six months – is unbearable to hear.
Jess with mother Andrea and father Simon. Andrea says: ‘Her hopes and dreams were very simple. She wanted to buy her own home with her boyfriend, Alex; she wanted a Persian cat and, really sadly, she wanted to have a baby.’
‘Jess was a really gentle, kind, thoughtful person but she was also meticulously organised and determined,’ Andrea says. ‘She didn’t smoke or drink alcohol. She was someone who always did the right thing.’
So when she first felt unwell with abdominal pain that June, Jess, who’d been so healthy growing up that she’d never had antibiotics, immediately made an appointment with her GP.
Over the following months, as her symptoms escalated – a persistent tickly cough, sore throat, upper back pain, fatigue and weight loss (her jeans were soon hanging off her) – she was repeatedly reassured that she had long Covid, despite never having had a positive Covid test.
At times Jess felt she was being a nuisance, something Andrea finds particularly hard to bear. ‘During one call to the surgery, when she was terribly unwell, she heard the receptionist say: “I’ve got that girl, crying on the phone again.”
‘Jess was desperate,’ Andrea says. ‘This is the thing that has upset us the most. It’s really hard when you’re at your lowest ebb to fight to be heard. But Jess did fight, very hard. She knew her own body and she knew things weren’t right.’
Because she was young and healthy, no one seemed to be worried about her symptoms
By the time adenocarcinoma – a cancer that begins in the mucus-producing glands that line organs – was finally diagnosed at the end of November after a private appointment with an ear, nose and throat consultant, it was stage 4, too late for Jess to begin any kind of treatment (adenocarcinoma is treated with surgery and chemotherapy).
She died three weeks later, on December 20, 2020.
Five weeks after that, in the midst of her own grief, Andrea started a petition to improve awareness and diagnosis of cancer in young adults, and formed a charity, The Jessica Brady Cedar Trust, which is campaigning for Jess’s Law. This would mean GPs must review any case where a patient continues to report escalating symptoms after three appointments.
The petition now has 30,000 signatures and, chillingly, hundreds of families have contacted the Bradys to say they’ve also lost young people to cancer in similar circumstances.
Listening to the Bradys’ appalling story, it’s hard to see how Jess, always diligent and polite even when so ill, could have done anything differently.
Jess, a devoted big sister to her brother Hugh, was so close to her mum that they spoke every day
‘Because she was young and healthy, no one seemed to be worried about her symptoms, so we put our faith in the doctors instead of trusting what we could see – our Jess was dying in front of our eyes,’ Andrea says, wiping away her tears.
Jess, a devoted big sister to her brother Hugh, now 27, was so close to her mum that they spoke every day. In June, she told her she was having abdominal pain and had been prescribed anti-biotics for a urinary tract infection following a phone consultation with her GP.
Almost immediately, Jess developed a persistent cough.
‘Her throat was so irritated, she was talking in a whisper,’ Simon recalls. Again, over the phone, Jess was prescribed a course of antibiotics. The doctor thought it was long Covid.
Over the next five months, as Jess became increasingly unwell with fatigue and weight loss, she was prescribed six courses of antibiotics and steroids to try to clear the cough.
From July to the beginning of November 2020, there were no face-to-face appointments available so Jess had 17 telephone consultations with four different GPs. One ordered blood tests, but in August she was told the results were ‘normal’ and to go to A&E if she was worried.
Jess did go. Another blood test found a raised D-dimer level, a protein produced when a blood clot breaks down. High D-dimer levels are also associated with metastasis, where cancer has spread, shedding cells.
‘This must have rung alarm bells at the hospital because Jess had a full body MRI scan that day,’ Andrea says. But this came back clear.
A few days later, she had a popping sensation in her chest. ‘From then on, brown, gloopy liquid started to seep out of her nose and trickled down the back of her throat,’ says Andrea.
Four years after Jess’s death, Andrea and Simon are determined to improve awareness and diagnosis of cancer in young adults
Although scans show detailed images inside the body, some lung and gastrointestinal cancers – as Jess’s turned out to be – can be difficult to spot.
Other symptoms quickly developed. ‘But no one looked at them all together,’ Andrea says.
‘Jess became breathless and her back was so sore she couldn’t wear a bra. She put it down to the fact that she’d been coughing a lot. In fact, tumours were growing on her spine and bones.’
On a family holiday in Cornwall at the end of August, Jess looked exhausted. ‘She was spitting up horrible mucus,’ Simon recalls. ‘She was breathless, but she tried so hard to be normal.’
Felled by this memory, both parents are silent for a minute and tears again roll down Andrea’s cheeks. ‘I feel desperately sad and traumatised that Jessie went through all this alone. And no one understood.’
According to Cancer Research UK [CRUK], the number of ‘early onset’ cases – young people diagnosed with cancer aged 20-34 – is the highest in 30 years, with eight out of the ten cancer cases related to the digestive system.
Scientists at Team Prospect, a multi-disciplinary research team funded by CRUK and the Bowelbabe Fund – set up after the death of Dame Deborah James from bowel cancer – believe the changes are being driven by a combination of factors, including diet, environmental factors (such as pollution) and genetics.
The challenge for GPs is that cancer in young people is still rare – adults aged 25-49 comprise about nine per cent of all cancer cases – so doctors must tread a line between vigilance and not ordering unnecessary tests. The Royal College of General Practitioners is working with The Jessica Brady Cedar Trust to improve diagnosis.
‘GPs want to deliver the very best care to all their patients,’ says its chair, Professor Kamila Hawthorne. ‘It’s critical symptoms are picked up quickly and action taken, including rethinking the approach if problems persist over multiple consultations.
‘Jess’s Law would formalise this process, so that when a patient presents for a third time, with no improvement in their symptoms, GPs are more likely to consider the possibility that this might be a difficult-to-diagnose cancer.’
On November 1, Jess showed Andrea the lymph nodes in her neck. ‘They were hugely enlarged,’ Andrea says. ‘After she’d gone, I burst into tears – which is most unlike me – because I was so worried. I said to Simon: “I think she’s got cancer.”’
The next day, Jess managed to get a face-to-face appointment – it was her 20th consultation – and Andrea went with her. They took a list of Jess’s 20 symptoms, including the badly swollen lymph nodes in her neck, and requested a referral to an ENT consultant. The GP refused. ‘He said her chest was the clearest he’d heard in months,’ says Andrea.
The family decided that Jess should see a specialist privately. ‘As soon as she looked down Jess’s throat, she knew something was wrong,’ Simon says. ‘She referred her back into the NHS for a biopsy of her lymph nodes.’
On Thursday, November 26, they learned the biopsy showed Jess had secondary cancer in her lymph nodes. Andrea’s response was ‘guttural’.
‘I let out a cry. I knew this was very, very bad. Jess was calm. She reached out and held my hand. I wonder if, in some way, she was relieved she at last had an answer.’
A scan found cancer in Jess’s stomach, spine, liver, lungs and lymph nodes – so advanced that it could not be treated.
Andrea recalls: ‘Jess found it so hard to have no hope.’
Yet she marvelled at the way her daughter communicated with medics.
‘Jess was just the model patient. She was desperately confused and upset, yet there was no bitterness. We learned so much from her about grace and dignity.’
Their daughter’s awful, protracted death just before Christmas on a Covid ward haunts her parents.
But while on oxygen struggling to breathe, she’d been quietly determined that people should understand she should have been listened to. So, with her dad, she composed a letter to her GP surgery, listing the doctors she’d seen and what they’d said.
The response, which came after she died, was ‘defensive’, says Simon. The family has since been contacted by ‘countless’ other families. ‘At least once a day, someone would get in touch saying the same thing had happened to their child, with their symptoms blamed on exercising, IBS, allergies, stress ,’ says Andrea. ‘All of them have died.’
Four years after Jess’s death, Andrea and Simon are determined to improve awareness and diagnosis of cancer in young adults. They are also campaigning for Jess’s Law to become legislation. Andrea explains: ‘We feel if it is in the form of guidelines, it will be forgotten.
‘We know that GPs often do not deviate from their initial diagnosis – we need them to be curious and empower them to rethink. If Jess’s Law is ratified, then they will feel supported in ruling out the worst-case scenario at the earliest opportunity.’
‘The impact of losing someone young is catastrophic,’ Simon says.
Just before Jess died, the satellite she’d been working on was launched into space at the US space centre Cape Canaveral with her name on it – a beautiful and painful tribute.
‘Every single day we look at each other and ask how did this happen?’ Andrea says. ‘Why our Jessie?’
- To sign the petition, go to jessicabradycedartrust.org.uk
