TRUSTFEST - TEENAGE CANCER

Lulus Story

Lulu lived for almost 16 years before she was diagnosed with cancer – there was a lot more to her than the disease that eventually took her life.

She was feisty, opinionated, and fierce. She was not a geeky goody two shoes and nor was she saccharine sweet. But she also had a real lust for life, for people, and a spontaneity that was infectious – if she wanted to do something, she did it.

Lulu was diagnosed with Ewing sarcoma in 2019 and treated on the Teenage Cancer Trust unit at Weston Park Hospital in Sheffield. It was so traumatic for all of us that the staff on the unit became more important to us than our family in some ways.

The chemotherapy regime she was subjected to was relentless – one week of chemo 24/7 then a week off. That same process went on from June 2019 to Feb 2020 with a short break in October 2019 to have her leg amputated. It was horrific.

All through her treatment she battled just to do normal things and did them with a stoicism and bluntness that was unusual.

By September 2021 she was out of treatment, mobile on her prosthetic leg, and had started studying English at Newcastle University. In April 2022 she had a pain in her shoulder and went to A&E, where they took her vitals and said there was nothing to worry about. She lived with that pain for 3-4 weeks and tried to explain it away to herself as a sports injury, or trying to convince herself that perhaps it was because she’d slept awkwardly.

But afterwards she told us that she knew in her heart that the cancer had come back. She had a full CT scan and they found significant tumours in her shoulder, ribs and chest.

Initially they said Lulu probably had about 5-10 years left to live. She said she thought it was peak (slang for shit) but came to terms with it as much as she could and decided to change her degree and study art, her real passion.

She went back to Newcastle and carried on living in student accommodation, and with her boyfriend Paddy, and came under the care of the Freeman Hospital, which also has a Teenage Cancer Trust team.

Her specialists said that further chemo could buy her a little bit more time but that’s not what she wanted. She’d had such a horrible time with treatment the first time around, and didn’t want to spend any of the time that she had left in a hospital bed.