I knew I had cancer but doctors refused to listen to me

Amy Chilton was diagnosed with Hodgkin’s lymphoma (Picture:The Portfolio People)

‘We suspect you’ve got a cancer called lymphoma.’. It was April 2023 and the news came with a wave of anxiety and fear for my future. These are not the words any 23-year-old expects to hear, but they’re the ones that I still struggle to comprehend – even today. Before my Hodgkin’s lymphoma diagnosis, my life was flourishing. I was settling into a new life in London with my boyfriend and doing well in self-employment as a drama teacher and teaching assistant, alongside auditioning for jobs in musical theatre. Then one day in November 2022, I woke up with scratches all over my body. But I didn’t actually think much of it at the time. It happened again the next day. Then the next day after that. Every morning brought a new one. I even joked with my boyfriend about our potentially haunted flat. By December, my skin was intensely itchy and uncomfortable. I’d had a lingering cold for weeks, and I became hypersensitive to clothing labels and seams.

Before her diagnosis, Amy’s life was flourishing (Picture: The Portfolio People)

Over Christmas, I went home to where my parents live in Loughborough with a bruise the size of a tennis ball on the back of my leg from scratching. Concerned, Mum and Dad took me to the walk-in centre. However, I was turned away, having been told by the doctor that the year’s viral infections were particularly bad, and receiving little advice about my skin. Come January, I had unknowingly lost weight. The itching had become so intense that I couldn’t sleep, I was sweating randomly, and I found myself living in baggy clothing to avoid the unbearable sensation. I kept going back and forth to the GP, reduced to tears on numerous occasions and missing days of work to get to the bottom of it. Initially, I was told it was air pollution and given antihistamines, which didn’t help. Then, I was diagnosed with anxiety and referred to counselling. I couldn’t believe it could be anxiety; I had never experienced it before, and life had been going so well. Despite my disbelief, I tried everything to alleviate the symptoms: meditation, hypnotherapy, counselling, acupuncture, and even Chinese herbal medicine. None of these treatments worked.

Amy had a sense of relief when she was finally diagnosed (Picture: Amy Chilton)

By February 2023, things had worsened to the point where I couldn’t work. So I returned home to live with my parents and found myself bedridden. If I thought I had been let down by the healthcare system in London, I was in for an even bigger shock. The pattern persisted at home. I kept going back and forth to the GPs, where my symptoms were dismissed as weird and not taken seriously. Each time I visited, I saw a different doctor and had to explain my case repeatedly. Then on 23 February, I went to the hospital for a routine check-up due to my scoliosis, which involves an x-ray of my spine. This revealed a tumour near my heart. When I asked the nurse about it, she assured me it was just shadowing. However, I was concerned due to my strange symptoms, so she said she’d follow up with the doctor and inform me via post. I received a letter two weeks later saying my spine hadn’t changed since the last x-ray. The night after I went to the hospital, though, I googled ‘lymphoma x-ray’ and watched a video on TikTok about a man who was diagnosed with the condition this way. Overwhelmed, I went downstairs in tears and told my parents I had cancer. They comforted me and took me to the GP the next day. I showed the GP the x-ray and asked: ‘Do I have lymphoma?’ He firmly replied: ‘No’.

Amy received excellent care (Picture: The Portfolio People)

Months passed with no progress. I tried to move back to London and get back to work because being self-employed meant that I wasn’t getting paid. It was in London that I finally got diagnosed. After persistent visits to the GP, I was eventually offered another x-ray – this time because I’d had a cough for six weeks. I was actually told that ‘nothing will show up, and I think your other symptoms are down to anxiety’, but I was sceptical. This x-ray led to a CT scan, which led to the words ‘you have cancer’ in April last year. Although scared, I remember feeling a weird sense of relief. I wasn’t going crazy, and I was finally being taken seriously. I remember asking the doctor if I’d be alright, to which she replied: ‘I can’t tell you’. That’s when I was really scared. Fortunately, the prognosis for Hodgkin’s lymphoma is very good, and I felt reassured after my first oncology consultation. From that moment on, I cannot fault the care I’ve received – I just wish I was quicker to receive it. Six months of chemotherapy has been tough and has taken a considerable toll on my body. My flexibility and strength has declined massively, which has impacted my ability to dance, and I also get pain in my ankles, particularly in the evenings.

Amy has now been given the all-clear from cancer (Picture: The Portfolio People)

I’m thankful that the chemotherapy is over now and that I have received the all-clear, but I’m still living with the side effects of chemo since finishing it in December. When I was diagnosed, I made it my mission to raise awareness for cancer in young people. Before even starting treatment, I raised £7,200 for The Teenage Cancer Trust by shaving my head. My Instagram page became my cancer diary, a place where I share the good, the bad, and the ugly – including what it’s like having a PICC line (the port in my arm that they delivered the chemo through), the stress of potential infertility, or the strains a diagnosis can have on relationships. One thing I feel very strongly about is encouraging cancer survivors to still feel valued and validated while going through treatment. I want to keep it positive but realistic, and I hope that by sharing my story I have helped other young people like me. I am thankful that my cancer responded quickly to chemotherapy and I am thankful for the incredible care I had at the Royal Marsden. Most of all, I am thankful for the support I’ve received from friends, family, and charities like my Young Lives vs Cancer social worker and Teenage Cancer Trust. A year on since my diagnosis, I am beginning to start back at work but it’s difficult because I can’t dance like I did before my diagnosis. I question my future: do I give up on my dreams due to the unfair hand I’ve been dealt? And will employers hesitate to hire me because of my cancer history? For anyone reading this who is experiencing any unknown, abnormal symptoms, please get it checked out. You know your own body. And be persistent if you have to be.