Different types of anxiety hit me during cancer
Different types of anxiety affected Amy when she was diagnosed with Hodgkins lymphoma. Though she knew it was treatable, she began to feel anxious about what she hadn’t done in her life, and also struggled with pre-treatment anticipation. This is her take on how she got through not only cancer, but the anxiety that came with it, with a little help from her specialist nurse Fiona and psychologist Hannah.
I knew the outlook was good but 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? Even though I’d been the treatment was good, I thought: ‘Oh my god, what have I not done in my life? I’ve taken things for granted, I’ve not done this, I’ve not done that..’
I had so many things going on. Having been made redundant during COVID, the following month I was supposed to be going back to work as cabin crew at Edinburgh airport. Me and my boyfriend had also booked a big holiday in America. I thought: What happens now?
They told me I couldn’t go on holiday or go back to work and that I had to focus on getting the ball rolling with the treatment. The holiday was booked in my name so I had to do all the cancellations and try to get my money back. So the day after being diagnosed I was phoning this random woman telling her I needed to cancel my holiday, and trying to say it without bursting into tears. When I told my boss I couldn’t come back to work I immediately got upset – hearing myself say it out loud, it hit home. All these silly things were the last thing I needed to be doing. I just wanted to sit and process what I’d been told.
Fiona, my Teenage Cancer Trust specialist nurse came over when I had my first meeting with the consultant, she gave me lots of info and kept in touch regularly. Fiona was really good at listening. It felt more informal with her – the nurses on the ward are amazing but they’re so busy and you don’t want to feel like you’re taking up their time. With Fiona, I knew she was there for me and would be able to answer questions or reassure me.
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?
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. 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 Tomazepan 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 Worker 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.
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.
After I finished my treatment I was on a high for weeks. They didn’t do ‘ring the bell’ at my day unit but I did do it at home - my dad built a stand and he bought a bell off Amazon and we celebrated with a Chinese take away! I went on a celebratory holiday to Turkey with my boyfriend. Then as soon as I came back from my holiday, I think it all hit me at once. While you’re going through treatment you’re in survival mode, but once the physical threat is over, you’re left with the mental and emotional aftermath of it all. It’s like: ‘What’s just happened?’ You’re trying to adjust to life again and wondering where to go from here.
Hopefully I’ll be back at work in 2023 – 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. Fiona had mentioned that sometimes after treatment is when people can mentally struggle with things.
Going to FYSOT at the end of October was amazing, I really enjoyed it, but in a way, seeing all these young people I felt a bit like a fraud, because I was fortunate I didn’t lose my hair or need a wig. When you see people whose hair is growing in or wearing wigs, you almost feel a bit guilty. I’m still seeing Hannah regularly, and Fiona and Nicola were really supportive at FYSOT.
