An ultra-fit personal trainer who mistook her tickly cough for COVID-19 only to discover she had eight malignant tumours – including five in her brain – is devoting the rest of her life to fundraising for research.
At just 36, Jenny Weller has never drunk alcohol or smoked, but received a diagnosis of lung cancer in September 2020.
Her doctors think it began to develop in late 2019, and in February this year Jenny, who lives with her husband Steve, 61, a depot co-ordinator, in Burgess Hill, West Sussex, was told she had around 18 months left to live.
The cancer was triggered by a mutation in the DNA of her lung cells – caused by two genes fusing, copying themselves too often and creating cancerous cells which can spread throughout the body.
Determined to leave the world a better place, she is now using her athletic prowess to fundraise for essential cancer research and has already abseiled down Portsmouth’s Spinnaker Tower.
“This isn’t something we thought we’d ever have to deal with," said Jenny. “Nobody ever wants to hear that they haven’t got forever left to live. But, at the same time, I’m happy with my lot. I’ve achieved a lot of the things I wanted to do.
“I’m trying not to focus on what I’m leaving behind, but rather on doing what I can while I’m still here.”
Jenny, who is fundraising with loved ones using the hashtag #wellerfest, first dismissed her dry cough at the end of 2019 as a seasonal cold and when COVID emerged, thought she must have had the virus.
“The nature of personal training is that we take people outside in the cold and wet a lot," she said.
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“It wasn’t unusual to have a cold or a cough at that time of year. It’s just that this one didn’t go away.”
Still firing on all cylinders despite her cough, Jenny was happily running her business, a personal training studio called Rapid Results PT in North Chailey, East Sussex, and giving her all to life as usual.
“It was just a really dry irritating cough and it didn’t really affect me unless I exerted myself,” she said. “If I was playing a sport I would cough, or when I was lying down trying to go to sleep I’d cough a lot – but other than that it didn’t really affect me at all for a good few months.”
In March 2020, as the world plunged into lockdown, the coronavirus pandemic offered another explanation for Jenny’s mystery cough.
“I just put the fact that I wasn’t recovering down to either having had COVID, as no one had really been tested at the start, or that I was not sleeping enough – because of the stress of closing the gym and transitioning to working online.
“No one was really going to the doctor with just a cough at that point.”
As lockdown eased and she was able to work outside with clients again, her symptoms worsened. Jenny developed a splitting headache and would occasionally be sick when she changed position and sat or stood up abruptly.
But it was only when a lump appeared on her neck that she arranged a telephone appointment with her GP.
“I had a nasty, thumping horrible headache and I was losing weight because I couldn’t keep my meals down properly. Once the lump came up on my neck, I called my GP for a telephone appointment, then he asked me in for an examination.
“It was at that point that he said, ‘I don’t want to worry you, but I think this is probably something serious.'”
Her GP referred her to an ear, nose and throat consultant six weeks later – but her condition worsened significantly in the interim.
“It was the Bank Holiday Monday at the end of August 2020, I’d just taken the dog for a walk and I felt absolutely exhausted and crashed out on the sofa.
"I tried to go upstairs to go to the bathroom, but I passed out, fell downstairs and collapsed at the bottom,” she added. “I’m not really sure how long I was there. I then tried to go and be sick in the kitchen, but I collapsed again.
“Next thing I remember, Steve came home and found me on the floor in the kitchen having had a seizure, so we called 111.
“First they took me to the Princess Royal Hospital in Haywards Heath, then I was transferred in the evening to the Royal Sussex County Hospital in Brighton for scans.”
Over five days, Jenny – a keen rugby player – had various scans and a biopsy was taken of the lump in her neck, leading to the diagnosis of anaplastic lymphoma kinase (ALK)-positive lung cancer.
Despite her healthy lifestyle, she had a 35mm tumour in her lung and the cancer had spread, forming five additional tumours in her brain – one of which was the size of a golf ball. She also had one further tumour in her lymph nodes and one in her pelvis.
By then an in-patient on an oncology ward, Jenny's situation was grave, though when surgery to remove the golf-ball sized brain tumour eliminated her headaches overnight, she was still optimistic about her chances of recovery.
The word ‘terminal’ was finally used to describe her cancer in February this year, and she admits it was a bitter pill to swallow.
“I had put up with some pretty invasive surgery and radiotherapy treatment and in February I asked the doctor, ‘When am I going to get my life back? When can I get back to work? When can I drive?’
“She said, ‘You should prepare yourself for not getting back to your previous fitness levels and lifestyle.'”
This was a massive blow to Jenny, who had still been running her business since her diagnosis in September 2020, as she tried to claw back a sense of normality, and was looking forward to training again.
“I thought, ‘That can’t be right, that’s what I’ve been aiming for.’ Then the doctor said, ‘Well, you do have terminal cancer.’
“That was the first time the word ‘terminal’ had been used. I thought I had five or six years to live, but then she said the expectancy was one to two years and I was already six months in.”
A remarkably positive thinker, rather than giving up, Jenny just altered her priorities and instead of working hard to maintain a semblance of normality, she focussed on raising awareness of her kind of lung cancer and fundraising for the charities Brain Tumour Research and ALK-Positive UK.
Starting with fundraising for ‘Wear a Hat Day,’ which featured a Facebook video of her in a woolly hat, asking people to give money to Brain Tumour Research, she raised nearly £1,000.
Inspired by her success, Jenny and her family started the hashtag #wellerfest, launching a series of sporting fundraising events to help raise money.
In September 2021, she abseiled down Spinnaker tower in Portsmouth.
On November 28, #wellerfest will be staging a wild swim on East Sussex’s Hove seafront and in spring 2022 there will be a sponsored cycle from John O’Groats to Lands End and a mountain climb and zipwire ride in Snowdonia – as Jenny aims to raise £30,000 before she dies.
If there was more awareness of ALK-positive lung cancer, she believes she would have sought medical help earlier and that her life expectancy now might be more positive.
“Just having a cough, lung cancer didn’t even cross my mind.
“I think, because of the age gap between me and my husband, there was a natural expectation that we’d get to a point where I would be more likely to be looking after him, that I would be the one left behind.
“Obviously, now that’s unlikely to be the case."
Brave Jenny now says: “I’m not focusing on what I’ll leave behind - but rather, on doing what I can while I’m still here.”
Additional reporting, PA Media
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