Cancer and mental health: Young people's experiences

Cameron

In 2020, Cameron was diagnosed with testicular cancer. For him, the period before his diagnosis proved to be one of the most challenging for his mental health. The length of time it took to be diagnosed, and the sense that his symptoms weren’t being taken seriously, both had a negative impact.

I felt like I was made to feel my symptoms were not real, and that I shouldn’t worry. It made me constantly doubt myself and feeling like that caused me to shut off my emotions. During this time, I was frequently having anxiety and panic attacks as I was stuck in my own thoughts. The doctors seemed to use the term ‘you shouldn’t worry, as you’re not at that age you need to be concerned’. I think this made my diagnosis worse, as it almost made me feel like it was a death sentence and I remember saying to my mum ‘I don’t want to die’. It had quite a drastic impact on my life. 

I was referred to Chris, Teenage Cancer Trust’s outreach nurse at the time. She called me later that evening. I was emotional and anxious, so it was good to have someone to talk to. I didn’t feel like I was talking to a clinician when I chatted to Chris. I was able to open up to her about what I was thinking and feeling.

She also explained that young people experience and react to trauma differently. She told me that I could get some psychological help with my diagnosis. When I got to speak to the psychologist it really helped and set my mind at ease. I was able to speak to someone who wasn’t as invested in my life. My mum was always there and wanted to talk but I felt guilty as I didn’t want to upset her more.

I was also introduced to Steve, Teenage Cancer Trust’s Youth Support Coordinator for the area. Steve added me to a Facebook group where he invited young people with cancer to online events during Covid. Man United player Max Taylor spoke to us about his diagnosis of testicular cancer and how he overcame it. I found that really helpful as it allowed me to feel more open about asking questions.

I also attended things like lads’ curry nights and made new friends. I feel like some people look at you like you’re the black sheep once you’ve had cancer, but my new friends didn’t look at me like that. When people have been through cancer, they don’t have to speak about it all of the time; they just understand. I have made friends for life.

I used to enjoy going to the gym and going swimming, but I had nerve damage in my leg after the surgery, so I couldn’t do either for a while. I still suffer from nerve pain which is frustrating as I can’t be as active as I used to be, but I’m getting back into fitness again and it’s nice to be able to do some of the things I did before. It’s really good for my mental health.

Teenage Cancer Trust staff made me feel like a person, not a number in the system. I know they genuinely care.  Chris has retired now, but I don’t know what I would have done without her in the early days. Steve is still there if I ever need him.

Laura

Laura was diagnosed with Hodgkin lymphoma aged 24. She talks about her struggles with anxiety during her treatment, how the post-treatment phase was the most challenging for her, and how Teenage Cancer Trust frontline staff, particularly her nurse Maureen, helped her.

I had a lot of anxiety and Maureen was brilliant with me. She spent a lot of time with me and did breathing exercises to calm me down. Danielle, another Teenage Cancer Trust Nurse, was a great emotional support too.

Gemma, Teenage Cancer Trust’s Youth Support Coordinator, wasn’t in when I first started, and Maureen did activities with me to distract me. She said Gemma would do lots of activities with me when she was back. Everyone was talking about how great she was, so I was looking forward to meeting her.

Gemma introduced herself to me and explained that I could decide what sort of support I wanted from her and how often I wanted to see her. It would be very much led by me and very informal. Even if I’d said I wanted to do something, if I didn’t feel up to it then that was ok and Gemma would either come and sit with me or leave me to rest. There was no pressure and it was led by what I wanted.

I’m into arts and crafts so Gemma did a lot of that kind of thing with me. She was always there if I needed to talk. It didn’t have to be about cancer, it could just be about day-to-day things.

I lost all of my hair and I found that really hard. I was known for my blonde hair and now my identity included having no hair. I talked to Gemma about it quite a lot, and Gemma, Danielle and Maureen contacted the Little Princess Trust and got me a wig.

Maureen referred me to the hospital psychologist while I was having treatment. I saw them for a while, but I wasn’t in the frame of mind to have the sessions as I was sedated from treatment and wasn’t fully there.

I found things a lot harder when I had finished treatment. My self-confidence was quite low as I didn’t like the way I looked. During treatment my hair loss bothered me, but it was the least of my worries as I was focused on getting well. When I didn’t have that to focus on, I had more time to worry about how I looked and my identity. It made me anxious.

I’d also been a very independent person before cancer and I was used to making all of the decisions. During cancer the decisions were huge things that would affect my life, so I was independent in that sense, but then I was also relying on family and friends to care for me.

It all hit me after my treatment ended and I decided that I needed to see a psychologist. I’d talk to them about what was affecting me and even though they were reflecting the same thing back to me, hearing it back made me see things differently.

Amy

Amy talks about how her chemo sessions were a trigger for her anxiety, and the importance of her relationships with her nurses and a psychologist, who she continued to see post-treatment.

When they confirmed I had Hodgkin lymphoma, I was just in shock. The first thing I thought was, ‘Am I going to lose my hair?’ Even though they’d told me the outlook was good, you just start thinking you’ve not made the most of your life, about regrets, and how unfair it was. I didn’t know anyone who was diagnosed with cancer at 23. Why me? Why has this happened?

I started chemo in March, and was supposed to go in every fortnight, but there was a break in the middle because I got Covid. I was freaking out about that. I was responding well to the chemo and they were really happy with how things were going, so I was worried that having a gap between treatments was going to make it less effective. My Teenage Cancer Trust Nurse Fiona reassured me it would be ok and suggested I get some support from the psychologist, Hannah, who gave me techniques to help with the anxiety.

I’d also get anxious about the treatment, particularly the anticipation before each chemo. There was a syringe with a red drug in it and that was my trigger. I’d had a bad experience one time when the red injection was cold, it was a real shock and it made me feel really ill. So after that, as soon as I saw it there was that physical reaction, due to the association.

There was a time when I was on the ward and I was trying to keep it together and a nurse I really liked asked, ‘Are you ok?’ and I just burst into tears. I told her I was just anxious. She asked if there was anything she could do and I said if you could just hide the syringe from me when you’re doing it, it might help. So from then on she put a clipboard in front of it.

Hannah had told me Lorazepam was available to help with the anxiety, but I was scared to ask for it, due to the stigma on the mental side of things. I thought I had to be strong and just get through it, I thought maybe I wasn’t anxious enough to really need it, even though I was on the verge of tears sometimes going into the ward.  I spoke to Fiona and she said it was there to help me if I needed it so why should I unnecessarily suffer?  She said you’re going through a hard time as it is, don’t be ashamed to ask for help. I eventually caved and it did really make a difference – I would take it about an hour before I came in for chemo.

Fiona put me in touch with Nicola, the Youth Support Coordinator at Teenage Cancer Trust in Edinburgh. I joined a book club, held on Zoom, which she organised, and it was great.  That was the only time I spoke to people my own age, as the day unit was mostly older people and I was the youngest there by a fair bit.  We had a group chat on WhatsApp, it was quite informal, we’d talk about treatment and life after treatment.

If it hadn’t been for Teenage Cancer Trust I would have felt really isolated in terms of my age group. I would have felt really alone because people on the day unit were at least in their 40’s, which is a big gap in terms of life experience. Nicola was always trying to involve us in activities and she’s always got something lined up.

Fiona had mentioned that sometimes after treatment is when people can mentally struggle with things. Hopefully I’ll be back at work in the new year – I’m excited but also a bit apprehensive as I’ve not seen colleagues since before I was diagnosed and there is that slight anxiety of how are people going to be with you.