My family and I are very open about the fact my cancer is terminal
Content warning: This story talks about death and dying
Emily was first diagnosed with medulloblastoma (a type of brain tumour) aged 12, and sadly found out her cancer was terminal after relapsing aged 17. She shares how Teenage Cancer Trust Nurses Nic and Jax are supporting her.
I had chemo until I was 14 and had a few years of normal life before I relapsed when I was 17. A routine MRI scan picked up two small lumps at the bottom of my spine and a bigger lump in the middle.
I had an operation in September 2020 to remove the tumour in the middle, but the two tumours at the bottom were deemed too risky to operate on.
A meeting was scheduled for a few days later. I thought they were just going to tell us what treatment I needed. I was in a wheelchair and still recovering from the operation, so initially my mum went to the appointment alone as we thought that was easier. They told her that I needed to be present too and that worried me.
I went in thinking: ‘I’ve fought cancer before; I can do it again’. But then I got told my cancer was terminal and that I only had two years to live. I was just at the stage where I felt like I was getting my life back together a bit, so it was the worst appointment ever.
My mum was angry and in disbelief. I went through a lot of emotions. I was initially shocked, then I broke down in tears. I was so heartbroken. I was also very scared as I knew someone who had died of cancer, and kept thinking about her.
How talking about dying has helped
My family and I are very open about the fact that my cancer is terminal. We find it easy to talk to each other about it, and it’s definitely helped me cope with the fact that I will end up dying of cancer.
It’s also helped me embrace it and not be so sad, as it’s allowed us to start conversations about things like my bucket list. If we didn’t have those conversations, we wouldn’t have been able to plan out all the things I want to do before I die.
A big thing on my list is a trip to Disneyland Paris, which we’ve booked for December 2023. It will be my 21st birthday then too, so it’s something really nice to look forward to, which definitely helps.
Being open with my family has helped me talk to them about my funeral. I know I don’t want people to wear black as I find that really depressing, so I’ve communicated that to them.
We’ve also talked about where I want to be at the end. I initially wanted to be at home, but I think I’d rather be in a hospice as they will look after my family as well as me.
I don’t want all my conversations with my family to be depressing, so sometimes we joke about my terminal cancer. It sounds quite morbid, but it helps us.
Before my terminal diagnosis, I didn’t know what I wanted to do with my life, and I was really indecisive. Now, I just try to enjoy my life day to day. I was given two years to live, and I’ve already had three. I’m still able to do some things which I enjoy. It’s made me appreciate things more and given me the confidence to go out and do things, rather than take them for granted. I’ve kept up my Level 3 childcare course and my current working grade is an A*.
How nurses Nic and Jax have helped
Around a month after I was given the terminal diagnosis, I met Nic, Teenage Cancer Trust’s Clinical Nurse Specialist in Somerset. It has been incredible to have her support and my mental health would have been in a very different place without Nic.
During Covid restrictions she advocated for me to have a parent in hospital with me, as well as making sure I wasn’t in a bay with older patients and that I had a room of my own. She helped with a lot of the jargon the doctors used and explained things in simpler terms.
We meet once a month for a coffee and I feel like I can talk to her about anything. She’s happy to listen and she understands. She helps me look at the positive side of things rather than just the negative.
My mental health would have been in a very different place without Nic.
I’ve had open chats with Nic about my diagnosis. Part of my bucket list is going to lots of theme parks, and Nic has helped me by writing a letter which I can present to them to get a fast pass as I can’t stand around in queues.
I’ve also had support from Jax, Teenage Cancer Trust’s Nurse in Bristol. Nic can’t travel up to Bristol for my appointments, so Jax is there for me. When I got the results from a scan in January 2023 to say the cancer had spread, she comforted me and let me know she was there in case I needed her support. I really appreciated that.
She can also help me organise appointments when Nic is off. It’s great to have a second person I can contact when I need them.