Lulu Blundell: Short film Lulu: Forever 19 will celebrate the life of Rotherham teenager Lulu Blundell who died on New Year’s Day from rare cancer

The trust and NHS staff worked tirelessly to support Lulu Blundell to keep living her life to the full through years of treatment and in her last months.

The film, titled Lulu: Forever 19, is part of the campaign set up by Teenage Cancer Trust that sees Lulu’s own inspiring words and reflections on living with cancer and a terminal diagnosis, read out by her mother Carolyn against a backdrop of photos and video clips taken by Lulu and her loved ones.

Lulu was diagnosed with Ewing’s Sarcoma in 2019 at the age of 15 and following 18 months of gruelling chemotherapy 24 hours a day for seven days every fortnight, and after having her leg amputated, she was told she was cancer free.

In April 2022 while she was studying at Newcastle University, she felt pain in her shoulder, which was initially brushed off as a sporting injury. However, following a CT scan arranged by her consultant, Lulu received the devastating news that she had tumours in three areas of her body: her shoulder, ribs and chest. She was told that the cancer was terminal.

She was given a prognosis of just months to live, not years as previously hoped. In October and November of last year, Lulu was still able to get out of bed and do one thing a day that she wanted, but by December she was too ill to leave the house.

Lulu died at home with her family and loved ones.

As part of the campaign, Teenage Cancer Trust worked with its frontline workers to create new online resources to help young people talk about receiving a terminal cancer diagnosis.

Chief nurse at Teenage Cancer Trust, Dr Louise Soanes, said: “We are so thankful to Lulu and her family for their fundraising and sharing their story, which will help so many other young people with cancer.

“No parent wants to ever imagine having to help their child come to terms with a terminal diagnosis, plan where they’d prefer to die, or their funeral, but these are the difficult conversations that are needed to be had every day across the UK for many young people with cancer and their loved ones.

“We are proud that our incredible nurses and youth support teams work every day to support young people and their loved ones in this situation, because talking about dying is important, and no wishes or worries any young person has towards the end of their life should go unspoken.”

Lulu had raised more than £95,000 for Teenage Cancer Trust and her mum Carolyn and loved ones continue to fundraise in honour of her. They hope to reach their £100,000 target this year.

As part of the film, Carolyn reads out loud words said by her daughter before her death.

“Two and a half amazing years later full of laughs and smiles, and unfortunately, I found out my cancer has come back in four spots, and I have made the decision not to go through chemo; rather be on palliative care and keep all my pain under control until we no longer can.

“Despite being told I have relapsed, and now being terminally ill I’ve laughed and loved harder than I ever have in my life the past few months.

“Happiness can be found in any situation at any point, and a pinch of kindness will never go amiss; behind closed doors someone might need you to be their ray of sunshine.

“Every single nurse, therapist, social worker that has worked alongside me has been my little ray of sunshine. Time and time again through chemo, remission and relapse they have saved my life whether that be physically or mentally…

“I hope after reading this I’ve inspired you to do the things you said you were going to do tomorrow, make the people around you smile, and stop worrying about the things that don’t need worrying about. Life is too short.”

Carolyn said: “There was a lot more to Lulu than her cancer. She was a normal teenager, not a geeky goody two shoes. She had a lust for life, for people, and a spontaneity that was infectious - if she wanted to do something, she did it.

“Lulu’s specialists said that further chemo could buy her a little bit more time but that’s not what she wanted - she said she 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 she 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 ton 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.”

Part of the film shows the emotional moment Lulu crossed the finish line at her Run with Lulu event in September last year, a charity 5k that she organised with her family and rugby club to raise money for Teenage Cancer Trust.

She ran the event on her prosthetic with a broken shoulder blade, as the tumour had grown so big, and raised more than £21,000.

“People say they are changed after seeing how she lived, especially in the last six months of her life,” Carolyn said.

“They got that tattoo they always wanted or booked a holiday. ‘Living like Lulu’ has become a bit of a mantra for so many.

“When you realise that you have so little time with someone you become really present in the moment. Right through last summer, and especially after we found out the cancer had spread, we basked in every little thing we did together.

“You can’t manufacture that situation and there were moments of spectacularly pure beauty and love. Even memories of watching Love Island with Lulu, her brother Seth and Paddy are really precious.

“But nothing could have prepared us for those last few weeks.

“We didn’t think she’d make it to Christmas, but she wanted to show Robin, her oncology consultant, that she’d get to 2023, and she made it to New Year’s Day.”

“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 everything Lulu went through which is why sharing my story means so much, and why we’re finishing off the fundraising Lulu started for Teenage Cancer Trust.

“If sharing Lulu’s story and our fundraising helps another young person or their family then we can take some comfort from that - 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.”