A woman from Oldham whose firefighter husband died from a rare form of cancer is determined to bring change to the UK medical sector - and has set up a charity in his memory to "continue the fight".
Nicola first met Ricky Casey as a teen but they only started dating later in life and married in their 40s.
The 47-year-old, from Delph, described her husband as simply the "kindest, protective, caring and fun-loving person I'd ever come across".
But tragically, their future was cut short in 2019 when Ricky, a passionate firefighter in Oldham for 16 years, died at the age of 48 from a rare and aggressive form of cancer, Renal Medullary Carcinoma (RMC).
Nicola said their journey - from the diagnosis to the day he died - was fraught with difficulty, with an acute lack of awareness, treatment, support and literature surrounding RMC in the country.
Ricky first became sick in March 2018 when he complained of pain in his testicle as well as lower abdomen pain, fatigue and pain in his lower back - almost like a kidney infection, Nicola said.
But he also couldn't eat or sleep properly, and he rapidly lost weight.
Nicola said: "It is a very aggressive, cruel cancer. To watch him decline daily like that was just horrendous.
"When he started to get really poorly, he was still fighting the fires at the Moors and the type of person he was, he loved his job and he just wanted to continue.
"But he was constantly declining and his last day of work was in June 2018 when he was pulled off.
"It devastated him. In his mind, he was always going back, but to be taken off the job was also to admit that he was poorly so it was a tough time for him mentally as well."
Just two months later, and five months after first visiting the GP, an emergency kidney biopsy at Manchester Royal Infirmary confirmed Ricky had RMC.
Chemotherapy treatment then kicked in at the Christie, but Nicola said the journey was "tough" from there on out.
"Hearing those words, Renal Medullary Carcinoma, is something no one ever wants to hear because when you look into it as I did, you spend hours trying to find answers and there was nothing.
"Everything pointed to America or was bad news - like people surviving between three and six months.
"There was no treatment. No trials. No literature. Even the doctors and clinicians were unaware of what to do next and he was already at stage four by the time we got this information.
"It was just so overwhelming to deal with and stay positive to support your loved one when you're also scared at the same time", she said.
Nicola said Ricky was "in denial" throughout most of his illness, seeing the cancer as just a "blip" right up until he passed.
A glimmer of hope did appear at one point when the couple, supported by the NHS, applied for a drug that isn't available in the UK.
However, their application for the drug was refused due to a lack of evidence and its costly price tag.
Their friends then pulled together to fundraise and pay for it themselves and although they hit their target, Ricky's health plummeted and a bout of pneumonia saw him taken to hospital.
He died just six weeks later on May 1, 2019, before they could give the drug a chance.
Driven by grief and determined to make sure no other families face RMC alone, Nicola promptly set up her charity, The Ricky Casey Trust.
She said: "I lived at the hospital during those weeks.
"When he passed away, coming home was still such a big shock, even though I knew what was going to happen I sort of didn't as well.
"But I didn't want to see the money that was raised for the drug go somewhere I didn't know - I wanted to see it was being used correctly.
"So the only thing to do was set up my own charity."
The Ricky Casey Trust was finally launched in the peak of lockdown in 2020, which Nicola said felt "amazing" to achieve something so soon in his honour and memory.
"If I can help just one person, he would be really proud and I'd have done something good out of my grief," she added.
The nonprofit is the first of its kind in the UK and Nicola said it's gone from strength to strength, having gained some notable celebrity patrons and raised more than £100,000 - £12,000 of which came from Ricky's best friends who completed a sponsored walk from Oldham to London in nine days.
Nicola also offers 24/7 support to patients, over the phone, emotionally and during regular visits.
She even helps them to navigate medical terms and put them in touch with doctors.
"I didn't think I was going to have a patient for many years but then I had the first contact and I wondered how I was going to deal with it emotionally so soon after Rick.
"But then the fight just kicks in", she said.
"I'm fighting for Rick now all the time and so others don't feel alone like we did."
Nicola, who works full-time as a beautician in between her charity work, is now hoping to challenge misconceptions, raise awareness about the signs and symptoms - which include having a sickle cell trait - and bring change to the UK medical sector by raising £500,000 to fund the first trials.
"It all starts there - it starts with the GP and doctors and the top clinicians listening and wanting to be passionate about being the first in the UK to make a change, because it can be done. It's happening in America.
"It needs advocacy and work and that will make all the difference because then people wouldn't be getting misdiagnosed or going into the unknown with treatment and dying.
"I'm going to do everything in my power to solve it. That's my aim.
"I just think, if only Ricky knew."
Symptoms of RMC
The most common presenting symptoms of RMC are similar to those of other kidney cancers, The Ricky Casey Trust says, which includes:
- Passing blood in the urine (haematuria)
- Pain in the region of the kidney/flank on the affected side
- A palpable abdominal mass
- Associated ‘constitutional’ symptoms such as weight loss or fatigue
It's also common for patients who have an underlying abnormality of haemoglobin, known as ‘sickle cell trait’, to develop RMC.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here