Personal experience

Sophie’s story
Sophie talks about coping with a diagnosis of Hodgkin lymphoma, while finishing school and planning university.
In November 2019, while in my final year of school, I was diagnosed with Hodgkin lymphoma. For two months I knew something wasn’t right. I was out of breath and tired all the time and had lost my period for six months.
The GP put it down to being a teenager and stress in general, but after being given some medication to kickstart my period, I got unbelievable stomach cramps which sent me to A&E. Initially, I had a blood test which showed I was extremely anaemic. I then had a chest X-ray. At first this didn’t show any results however, two weeks later, the hospital called my mum and told us there was a shadow on the X-ray. Neither of us knew what this meant, but I was called in for an overnight observation which included a CT scan.
They explained they were investigating tuberculosis, sarcoidosis and lymphoma - three long words that I didn’t know the meaning of at the time. A biopsy was needed, and I had to wait three weeks for the results. I was told I had Hodgkin lymphoma, a type of cancer. Nothing could have prepared me for that moment. I felt everything and nothing all at once. It didn’t feel real.
Two days later I had a PET scan which came back indicating lymphoma all over my body. Even though it was stage 4, the prognosis was relatively positive but I was going to need a pretty intense treatment plan. I was to have six cycles of chemotherapy, each lasting four weeks, two intensive and four less so. At this point, I had no idea how this would affect my future plans of finishing my A levels along with my friends.
Going into treatment, my main concern was losing my hair. Sadly, after the first 10 days of treatment it started happening. This was incredibly hard and I felt that no one truly understood how I felt, and I didn’t have the energy to explain. I never realised how key my hair was in making me feel pretty and once it was gone, to put it bluntly, I felt ugly. No amount of beautifully crafted wigs or reassurance from my family and friends could make me feel any different. To make things worse, the steroids that were part of my treatment, made my face blow up like a balloon, making me feel unrecognisable.
Over the next six months from November 2019 to May 2020, I dealt with many more side effects from my treatment. Some days I struggled with vomiting and nausea and others constipation and shooting pains in my legs. No two days were the same, but I learnt how to cope and the doctors and nurses were great at handling the side-effects, so that they gradually became more manageable. I also struggled with chemo brain, which can only be described as a type of brain fog. It was like trying to get dressed in the morning, but the room was pitch black and my clothes were all over the place. It couldn’t be measured or quantified, so a lot of the time I felt like I was making it up or being dramatic. It still poses a problem for me today, but the effects have got much better.
My treatment plan included radiotherapy because the cancer hadn’t completely gone after two cycles of treatment. I always knew this was a possibility, but it felt like the treatment was never-ending. In order to have this done, I needed to have my ovary moved out of the way of the targeted radiation - yet another procedure. This was to ensure that my fertility wasn’t affected. I never thought I’d have to think about having children at 18, but then again, I never thought I’d have cancer at 18 either.
“Having to travel an hour each way, every day, for three weeks to radiotherapy was exhausting but successful and by July 2020 I was in remission!
By September 2020 I was starting my degree at the University of Birmingham. It didn’t take long for the reality of what I had been through to sink in. About nine months after treatment, I started therapy, and still have regular sessions now. Having cancer wasn’t just the chemotherapy and the hair loss and the physical side effects. There were so many more things emotionally that came after the treatment itself. In hindsight, I underestimated the impact of what I had been through. I’m not the girl who had cancer anymore - it’s not the first thing that comes to mind when I think of who I am, which feels like something positive.