Back in August 2019, after months of missing symptoms, these really huge lumps appeared on my throat. I got them checked out and I was diagnosed with stage 4 non-Hodgkin lymphoma. I think I was in a bit of denial. Even though I was being told by a doctor, I thought, “no, not me.”
I had a standard treatment plan, did chemotherapy for six months and it went really well. They said I had an excellent chance of getting the all-clear. My tumours disappeared in one or two courses of chemo and I went into remission in March.
A month later, I noticed something in the mirror as I was getting out of the shower. The lumps on my neck were back.
The doctors started me on GDP chemotherapy straight away, but my cancer kept progressing really aggressively and they said that chemo was not working for me. I had to do radiotherapy and CAR-T cell therapy.
I was very scared for the CAR-T because it was invasive, having a central line put into your groin and arm. I remember them saying one in three people on the treatment could go into a coma or have seizures, so it was a really scary treatment, but I didn’t have a choice.
At one point during treatment, my brain got really swollen so I couldn’t speak or move properly. It felt like I was locked inside my body. The nurses asked me questions but I couldn’t get my brain to coordinate with my mouth.
It was a very scary experience and after that I had nightmares for weeks about being paralysed in my sleep. I would wake up shaking and crying, thinking that I was paralysed. I dreamt that there was a gag over my mouth, I couldn’t move or call for help and the door in my bedroom would be locked so no one could get in. I had nightmares like that for the next few weeks because that was how it felt when I had been awake.
In all honesty, I really didn’t cope well during that period. I was alone through most of it because of COVID-19. It was the most depressed I’ve been. Most days I didn’t have the motivation to get dressed. I didn’t have the motivation to shower. I had insomnia and I would lie in bed and stare the walls for ten hours a day.
It was a really bizarre feeling because I could just put on a film to pass the time, but even that felt like a chore. It just reminded me that I was trying to distract myself from the thought that I was dying, so instead I would just sit there. I didn’t really know how to cope. It was incredibly lonely and the time went by so slowly.
Most days I didn’t have the motivation to get dressed. I didn’t have the motivation to shower.
I used to be someone who was really chilled out and never really had any problems with my mental health until I got diagnosed. Cancer is as much a mental battle as it is a physical battle. A lot of people don’t fully appreciate that.
I still feel anxious. I have night sweats sometimes, which was one of the symptoms I had for lymphoma and immediately my brain will be racing all day. The anxiety takes over and I think, “have I relapsed?”
Even though my treatment has finished I still speak to my therapist. I just think it is really necessary to take care of your mental health because I don’t know where I would have been without that support. You can’t always talk to your friends and family. I definitely kept stuff to myself and you almost don’t want to admit it that you’re feeling a certain way. Whenever I need it, I can contact her and sort it out.
If you’re a young person going through cancer and you feel you’re struggling with your mental health, please do speak to your clinical team, Teenage Cancer Trust Nurse or Youth Support Coordinator. They’ll do whatever they can to help you, which may include referring you to specialist support.
If you or someone else is in crisis and needs urgent help or further support, please visit: https://www.teenagecancertrust.org/get-help/urgent-help