In 2014, Rachel de Souza faced being placed on end-of-life care after receiving the devastating news she had advanced cancer.
At St James’s Hospital in Leeds, scans showed multiple tumours. The cancer had originated in a lymph node behind her breastbone, making it hard to detect, and had spread into her internal organs.
“I couldn’t stand up straight,” said Rachel, now 52. “I’d walk bent forwards to try and cope with the abdominal pain.”
Palliative care was among the options being discussed by medics when Rachel said: “I want to be on a clinical trial.”
Three and a half years later, Rachel is now cancer-free after taking part in research to find out if the drug bortezomib could stop her condition, known as diffuse large B-cell non-Hodgkin lymphoma, coming back after treatment.
The Meanwood mum-of-four said her good fortune was partly down to her personal background working in research at the University of Leeds. She said: “I knew about clinical trials from work, but goodness knows what would have happened if I didn’t.
“It gave me something to cling to, which I desperately needed.”
Rachel still does not know if she received the drug because some trial participants are given a placebo. But she said she began to feel better after an intensive chemotherapy regime.
She said: “I was walking across the Leeds Clinical Research Facility one day and a research nurse said to me, ‘Oh Rachel, look at you.’ I was confused. Then I realised, I was standing up straight. I knew then the chemo must be working.”
Now Rachel is having follow-up appointments as part of the trial. In 2016-17, more than 70,000 people took part in research in Yorkshire with the support of the National Institute for Health Research. The NHS is calling for more people to take part in research in the health service’s 70th year.
Rachel said: “Whatever condition you have, ask about research. I might not be here today without it.”
Professor Alistair Hall, of the NIHR, said: “We would encourage anyone who is keen to know more about research to ask their doctor or healthcare professional.
“Every year, more than half a million people help improve healthcare and develop life-saving treatments by taking part in research.”