I came out as non-binary during cancer treatment

Initial symptoms and diagnosis 

I found a lump on my hip and went back and forth with doctors about it. They thought it was just a fatty lump and nothing to worry about. Soon after, I fell over on a ski trip and the lump grew. I went to the doctors, and they took a biopsy to be tested. The results came back as a 50% chance of it being cancer. I was told I would have regular check-ups and blood tests to monitor how I was doing.

When I was 17, I found another lump on my hip. I also felt very fatigued although I put that down to something else rather than cancer. This time, I went straight to the doctors, and I was diagnosed with Hodgkin lymphoma. There were three of us in the room: me, my mum and the doctor. My mum cried, and I just accepted it because I had been struggling to get answers all this time. 

How my Specialist Nurse helped me when I told her I’m non-binary 

When I came out as non-binary to the medical staff, my specialist nurse Julie championed my pronouns. It was terrifying at first to use them. I was worried that the medical staff would tell my parents even though I was over 18. I wasn’t out at the time. 

When I told Julie I was changing my name and pronouns, she was totally fine with it. Julie told everyone I had changed them and reminded my doctor about it. When I come in to get my blood tests, Julie says my name for me, so I don’t have to have that awkward moment with the medical staff. 

Julie made it easier for me to socially transition. She came to my college to tell them that I was non-binary and got them to change my pronouns. At a Teenage Cancer Trust event, Julie made sure I could have clothes that made me feel comfortable. She has really gone out her way. 

Julie also referred me to a psychologist, which was so helpful for me. I’ve come leaps and bounds since then. I started to feel more in control and knew more what to expect. Without the staff at Teenage Cancer Trust, my cancer journey would’ve been hellish. 

Since coming out as non-binary, I‘ve been comfortable in my skin. I don’t feel like I have to be a girl or a boy – I am just in the middle. The time I spent trying to not panic about cancer let me think about those things. 

When I was first diagnosed, I had a lot of family stuff going on and Julie stepped up. She’s interested in me as a person and made sure I always had someone there for me. 

When I see the doctors, Julie always comes with me. She takes in all the medical jargon and explains it to me in a way I can understand. She always checks up on me and has been a constant over the past eight years. The idea of her not being there at hospital gives me anxiety.

Youth Support Coordinator Hannah

When I first went through treatment, I just wanted to keep myself to myself. However, I went to a Teenage Cancer Trust Unit event and that’s where I met the Teenage Cancer Trust Youth Support Co-ordinators. The current Youth Support Co-ordinator is called Hannah. She’s amazing and keeps in touch with me. Thanks to her I got to do things outside of the hospital with other young people.

Hannah really puts the effort in and makes sure it’s a supportive environment. She has such nice energy, and it feels like you’ve known her for ages. Hannah jumped into the role and we have a wonderful group now. We call it the ‘cancer club’. She recently did a picnic in the park with all of us, and we saw Barbie together.

Treatment and mental health

I had chemotherapy for three months. I felt a bit hazy and experienced some sickness over my treatment. I also lost my hair and gained some weight. Despite that, it was mostly my mental health that took a hit. I was depressed and not taking care of myself. All the people who I thought I was close to, they were there and then they were gone. There were only a few people left in my corner. I ended up just wanting to keep to myself. 

A few weeks before I turned 18, I was given the all-clear.

Relapse and radiotherapy treatment

When I relapsed at 22, it was the very start of the pandemic. I was in my second year at college and I started to feel extreme tiredness. I also found a lump on the side of my face. When I found out it was cancer again, it felt like a slap in the face. I thought the symptoms couldn’t have been cancer. It was easier to get diagnosed this time round as I went straight to Julie.

I ended up naming the lump on my face ‘Phillip’. Naming took some of the worry out of it and it made it easier to feel all the feels around hearing about my cancer relapse.

When I received radiotherapy, I got intense swelling. It made my face look a bit like a melon. It did scare me a bit at the time as it was such as big thing. I used to go out with two masks on or a turtleneck jumper because it was noticeable. I was convinced everyone else could see it.

At the time, cancer turned my world upside down. I was about to sit my exams and go to university. It was a couple of weeks before Christmas. Luckily, the friends I made at college were there all through my radiotherapy.

The radiotherapy managed to clear away Phillip. Since then, I have been told to watch and wait for any further treatment. 

Future plans, Pride and advice for others

When I was at college, I really enjoyed making my own film about my cancer journey. I have now finished college and I hope to get a career in film. I look forward to going freelance and working on my own films. 

If I could go back and tell myself anything, it would be to remember the small acts of kindness from staff. There was a lady in the hospital who used to give me jelly cups and just small things like that really helped. Having cancer is intense and terrifying, but the support around you can help.

As much as cancer is a curse, a small part can be a blessing. It allows you time to work on yourself and figure more out about yourself. 

Cancer didn’t stop me from finding myself and I wanted to share my experience with others. Pride to me means being honest with who you are and being comfortable in your skin, as well as respecting the history that built you and your community.