Coping with a terminal cancer diagnosis: there’s no ‘right’ way
Before you read this: Thinking about death and dying can be really tough – lots of people prefer not to, and that’s fine. So if you’re not sure it’ll help you to read about these issues, it might be a good idea that you don’t read this page at the moment. You can come back to it any time you like.
Teenage Cancer Trust’s #TalkAboutDying aims to support young people with a terminal cancer diagnosis to have conversations about death and dying with their family, friends and care team.
Receiving a terminal cancer diagnosis is an extremely painful situation, and there’s no right or wrong way to react. But it doesn’t mean you have to stop living your life in the time you have left. Getting the chance to talk about how you want to spend this time can be an important and empowering step. Here, young people and families share their experiences of facing a terminal cancer diagnosis.
In April 2022 Lulu found out, aged 19, that her cancer had returned after treatment. She was initially told she probably had about 5-10 years left to live. Her mum Carolyn recalls:
“Her specialists said 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 she had left in a hospital bed.
“Lulu was really clear about what she wanted, and set about enjoying her summer and doing lots of things she’d always wanted to do. Danielle, her Teenage Cancer Trust Nurse and others at the unit went above and beyond to help facilitate that.
“She went to Glastonbury with her friends on a tonne of pain relief. She went to Magaluf with four friends – and had a great time but broke her prosthetic limb after drinking too much and had to fly home 2 days early! There were also trips to Amsterdam with her boyfriend Paddy, a family holiday in Northumberland and visits to London and Manchester.
“In September we organised a charity run with her rugby club to raise money for Teenage Cancer Trust. She ran it – on one leg with a broken shoulder blade – as the tumour had become so large.
“Later that month 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.
“When you realise you have so little time with someone, you become really present in the moment. Right through that 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.”
When you realise you have so little time with someone, you become really present in the moment.
Violetta was diagnosed with cancer three times, aged 15, 18 and again at 21. Before she died in 2022, she shared her thoughts on spending the time she had left:
“I’m going to keep pushing forward. It could be so easy to get stuck in sadness and panic. I enjoy spending time with my family, and it makes my day to play games together and have a laugh.
“There are some days when I struggle to get up and do anything, and other days are completely filled by going to the hospital, but I try to live as normally as possible.
“Teenage Cancer Trust’s Youth Support Coordinator, Ella, has helped me with that. She invited me to a make-up night and got me things I needed. She’s helping me organise a murder mystery party for my family so we can have some fun together.
“Ella knows I like painting, so she introduced me to art therapy. She brought me a paint by numbers set in hospital. I love painting – it helps get my feelings out and it’s really relaxing. I like colouring as well and I find concentrating on little things like that really help me, especially when I’m feeling anxious.
“Ella also introduced me to music therapy. I love writing songs too and if I feel like I’m struggling mentally, I try to write it all down. I struggle with speaking about my feelings and it’s easier to write them into a song. I get everything out that way.
“I want to help other people in my situation and if I can inspire one person, I will be happy.”
If I feel like I’m struggling mentally, I try to write it all down.
In 2019, Milan died from cancer aged 23 after being treated at the Teenage Cancer Trust unit in Bristol. His mum Florence recalls:
“After Milan was told there was nothing they could do for him, he asked how long he had left. Claire and Jax, his nurses from Teenage Cancer Trust, were lovely. They knew how to talk to him.
“Claire and Jax had to have some difficult conversations with him about end-of-life care and helped to prepare him for what was going to happen. They also asked him what he’d like his funeral to be like and helped him do his will.
“He didn’t talk to us too much about it initially and I don’t think he wanted to put that pressure on anyone. It was very tricky deciding whether I should bring it up with Milan. It’s not a conversation you ever expect to have as a parent.
“I didn’t want to be the first one to bring up funeral planning because I didn’t want to dampen his spirit, but once he had opened up, we all made sure we engaged with him. He made it easier for us to talk about it and it allowed us to ask him some questions.
“He’s such a planner and he’d written a lot down, including the fact that he wanted his service at a church, for everyone to wear black, and he wanted to be cremated but have a stone in the churchyard. He wanted some ashes there, some in France and some for us to keep.
“His girlfriend Ying helped him so much and they were deeply in love. In May 2019, he proposed to her on Clifton Suspension Bridge. They were both so happy and it kept him going. He was not well on his wedding day, but he smiled throughout and even had his first dance.
“Milan’s friends were amazing too. Not long before he passed away, he wanted to go to a Quentin Tarantino movie. We had to take three oxygen bottles and his wheelchair to the cinema. He was so determined and somehow we made it work. He also loved poker and the Saturday before he passed away, he hosted a poker night. I loved the fact that he was still enjoying himself with his friends.”
I loved the fact that he was still enjoying himself with his friends.