Living with cancer as a teenager

Hi, my name is Daisy and I am 15. And I want to talk to you today about my experience of living with cancer as a teenager because I think it’s important to understand how much an illness like cancer affects not only your body but your mental health.

So, to introduce myself… I have a hamster called Pebbles, she is my best friend and I rely on her a lot; she is always there for me. I love doing arts and crafts, as well as baking (my step mum says I’m better at cooking than clearing up!). My favourite thing to do is sewing (although I’m not that great at it) because I find it really relaxing.

In some ways my life is pretty average: I currently live with my step mum - well I just call her my mum as to me anyone can be your mum if they love and care about you. She is my rock, she is always there for me no matter what. We have been through a lot together.

My birth mum passed away after I was born, so I never got to meet her or get to know her. That has always made me really sad. I also recently lost my dad. I still think of them every day, I pray to God to look after them and I believe that they sent my step mum, my angel.

In January I was diagnosed with Chronic Myeloid Leukaemia, which is a type of blood cancer. Now I won’t go in to all the medical stuff and bore you, but basically this type of cancer progresses over a period of years. Currently I am receiving chemotherapy, along with medication and I was recently given a life expectancy of 25 years old. In lockdown I lost my hair and a lot of weight due to my treatment. Losing my hair was a big deal for me - I always had long hair, and it felt like a security blanket I could hide behind. I overcame the loss with some fancy hats.

School has been tough and I have been bullied. But my step mum has been amazing. She always has a way of making me feel so confident and beautiful. She didn’t need to stick with me after my dad died but it means everything that she did - she is my biggest support.

As a young person living with such a serious illness, difficult thoughts and ideas go through your head on a daily basis: ‘Did I do something to deserve this?’ ‘Am I a problem to my family?’ or ‘I’m not trying hard enough to fight this’ or ‘What’s the point?’ and many more. And these kinds of thoughts have led me to self-harm and an eating disorder.

Childhood cancer also has a huge effect on the person’s family and friends, and their mental health. Imagine being a parent and raising your child with an ideal future for them pictured in your mind, then one day that’s all stopped and put on hold while you spend hours at the hospital at your child’s bedside. Suddenly all you can do is try to comfort them.

I don’t want to only talk about what is hard, but also what helps me.

Definitely the biggest thing that has always helped me is talking. Talking to my step mum is always the best thing for me - if you don’t talk about what’s going on for you or how you feel no one will know and no one can help.

I also have an amazing support worker from the hospital called Jodie. Jodie is like an older sister - she can be there to share my thoughts and feelings with but also there to act like a child with and mess around.

My next thing is music. I have about 7 different playlists I listen to which are all related to different moods. If I’m happy and want a dance around the kitchen with me step mum I’ve got a playlist for that. If I want to have a little cry I have a playlist for this too.

My last thing is Alumina, which is a free online support community for teenagers struggling with self-harm. I joined Alumina earlier this year. It’s run by two people both called Jenny – and they are so nice and understanding. My treatment means I can’t access much support as I’m unwell a lot and highly vulnerable to COVID, but Alumina takes place online, and the Jennies kept me up to date if I can’t make a session or had to leave half way through. I’m really proud of how Alumina has helped me move towards recovery. I mark every week I’ve managed without self-harm by adding star beads on to a bracelet.