There was a lot more to Lulu than the disease that eventually took her life
Content warning: This story talks about death and dying
In April 2022 Lulu found out, aged 19, that her cancer had returned after treatment. She sadly died on New Year’s Day 2023. Her mum Carolyn shares her 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.
Danielle, her Teenage Cancer Trust Nurse, and NHS staff working at the charity’s units in Newcastle and Sheffield, went above and beyond to make sure Lulu could do the things she wanted in the time she had left – like go to Glastonbury. Things that might seem simple but take a lot of planning when somebody is very unwell.
She went to the festival with her friends on a tonne of pain relief – it was all arranged so that she could store and take it in the first aid tent. Had she become really unwell she wouldn’t have had to go to A&E, a named contact at the local hospital had been briefed about her whole history and was on hand if needed.
In September, a scan showed that the spread was really significant and that it was going to be months, not years, that she had left to live, which was devastating.
In October and November, she’d still make herself get up, dressed and out of the house to do one thing a day. But by December she was just too unwell.
We didn’t think she’d make it to Christmas, but she wanted to show her oncology consultant that she’d get to 2023, and she made it to New Year’s Day.
Nothing could have prepared us for those last three weeks and to see Lulu so ill and uncommunicative, and there was nothing we could do, was unbelievably hard. We all went through a huge amount of stress – one of us would be with her 24/7 and some nights she was in a lot of pain.
How family, friends and Teenage Cancer Trust helped
We’ve experienced so much kindness from people throughout all of this. What I really remember and valued during the time Lulu was at home under hospice care are the people that left meals on the doorstep. Lulu’s brother Seth was still going to school, and what was happening didn’t stop him being hungry.
And both of my parents, and my husband Stephen’s mum, would come around almost every day, so with the food people brought for us we could sit and eat together and do some more normal things that were really important at a time when things were falling apart.
I always think that if a family has a child that’s ill or in hospital, maybe don’t take flowers – take a shepherd’s pie, lasagna, or some homemade soup. What’s the worst that can happen? It goes in the bin.
During her treatment and when it was found Lulu’s cancer was terminal, we had so many difficult conversations as a family, and Teenage Cancer Trust and her team helped facilitate those.
Discussing the arrangements for her to die at home, helping her choose the spot where she wanted to be buried and talking about her plans for the celebration she wanted after her death was so hard, we needed that support.
We will never stop grieving for Lulu, but knowing that she was able to express what she wanted and being able to fulfil those wishes brings us some comfort.
It’s really important to me that something positive comes out of all this, which is why sharing my story means a lot and why we’re finishing off the fundraising Lulu started for Teenage Cancer Trust. In total she raised over £95k to help other young people with cancer, and we’re hoping to get that total up to £100k. It is too impossible to think no good can come from this tragedy and this is my driver to carry on, regardless of how long that takes.