First anniversary of death of much-loved Burgess Hill personal trainer

Jen Weller, of Burgess Hill near Brighton, died after developing 14 brain tumours within 18 months.

She was diagnosed with a primary tumour in her lung and five secondary tumours in her brain, as well as others in her neck and pelvis, in September 2020, a few days after suffering a seizure at home.

Following her shock terminal cancer diagnosis at the age of 35, Jen launched a year-long series of fundraisers for the charities Brain Tumour Research and ALK Positive UK, raising more than £20,000 for Brain Tumour Research under the banner WellerFest.

That fundraising has continued in the wake of her death, with a charity football match held at Hassocks Football Club just last month raising more than £1,000. It involved women Jen played football with from the age of 15 to when she stopped at the age of 35.

Her step-granddaughter, who ran out with Jen during the event last year, also took part, scoring two goals, whilst Jen’s husband, Steve, a long-standing referee, ensured the rules were adhered to. Players wore the kits Jen obtained last year, pink for Brain Tumour Research and blue for ALK Positive UK.

Jen underwent a craniotomy to remove the largest of her brain tumours and used targeted drug therapy to try and slow the growth of her others, but in 2021 she learned her cancer had progressed. She had radiotherapy but found out at the end of the year she had developed a further nine brain tumours.

Sadly, her health continued to deteriorate and she died in a hospice, with Steve by her side, on 25 May 2022.

Jen’s stepson, Paul Weller, who ran the London Marathon for Brain Tumour Research last month, said: “The week leading up to Jen’s anniversary has probably been the hardest because of how she was at this time last year. Her deterioration happened so quickly, over just three or four days. It felt like there were so many things she was doing that, when they finished, she finally allowed herself to stop.”

The 37-year-old, who works as a dispatcher for the South East Coast Ambulance Service, added: “Before her diagnosis, I would have described Jen as sporty, loyal and fun, but afterwards, I used words like courageous, strong and inspirational.

“People deal with things in different ways, but the way Jen dealt with her situation was incredible, and she was laughing and smiling right to the end.

“She had so many people who loved her and who she held close, and she allowed each one of them to have their last special moment with her independently, which is incredible.

“To think that she was the one dying and running out of time but she used the time she had to give others memories shows how special she was.”

WellerFest’s fundraisers began with an abseil down Portsmouth’s iconic Spinnaker Tower and included a ‘Big Dip’ advent sea swim, cycling John O’Groats to Land’s End, summitting Snowdon and ziplining Velocity 2, the fastest zip line in the world, among others.

Paul said: “Losing someone so close makes you realise how cruel this disease is. The fact it affects so many people at such a young age, but gets such little investment, makes me want to do all I can to prevent it from happening to others by raising funds and awareness.

“We were the unlucky ones because we always knew we were going to lose Jen, but we spent the time we had trying to get her story out there so people would understand the need to give more, and to try to get more recognition from those who can help make a difference.”

He added: “Dad and I would like to thank everyone who has supported us and followed our story, and for all the support shown to Jen.”

Charlie Allsebrook, community development manager for Brain Tumour Research, said: “It’s hard to believe it’s been a year since Jen died. She was an incredible woman who left a huge impression on all who knew her, especially those of us who were fortunate enough to witness the strength and determination she showed in her last year of life.

“Her legacy lives on through the many fundraising activities of her friends and family, and, of course, through WellerFest. Our thoughts are with them all this week.

“Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease. We’re determined to change this but it’s only by working together we will be able to improve treatment options for patients and, ultimately, find a cure.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

To make a donation in Jen’s name, go to braintumourresearch.org/donation