Sophie

On 17th July 2024 I graduated from Birmingham University with 2.1 in Liberal Arts and Natural Sciences. For most people this is up there with the biggest moments of their lives so far. While this was also true for me, my journey to get there was not quite the same as my peers.

In November 2019, while I was working hard in my final year of school looking to get into a prestigious university course, I was diagnosed with Stage 4B Hodgkin lymphoma. For the 2 months leading up to my diagnosis I knew something wasn’t right. I was out of breath and tired all of the time, surely it couldn’t be that I was just unfit. I had also lost my period for 6 months, but I was used to an irregular cycle and the GP put it down to being a teenager and stress in general.

After being given some medication to kickstart my period (having visited the GP about this 3 times), I got unbelievable stomach cramps which sent me to A and E. Initially, I had a blood test which showed I was extremely anaemic. Not great news, but manageable.  The next was 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 that they were investigating me for tuberculosis, sarcoidosis and lymphoma - three long words that I didn’t really know the meaning of at the time.

A week later I was called in for another test. I was told I would be sedated while a tube was put down my throat to collect samples for a biopsy. On arrival, with no warning, the procedure was carried out with no sedation. This was extremely anxiety inducing for me leading me to panic so much that they couldn’t finish the procedure. To this day, this biopsy was one of the scariest hospital experiences.

Since the first biopsy was unsuccessful, I had to go down a different route. The next biopsy was significantly more invasive than the first, but at least I got anaesthetic this time! I had keyhole surgery through the side of my right rib, which resulted in a 5 day hospital stay and a follow-up appointment booked for 3-weeks time. My appointment ended up being moved closer, which is never a good sign.

It was at this appointment where I was told I had cancer. Nothing could have prepared me for that moment. I felt everything and nothing all at once. It didn’t feel real.

It was at this appointment where I was told I had cancer. Nothing could have prepared me for that moment. I felt everything and nothing all at once. It didn't feel real. 

Sophie

Even though it was stage 4, the prognosis was relatively positive because of my young age and the type of cancer I had. I was referred to a ward catered for young adults and teenagers in my position. Two days later I had a PET scan (nothing to do with pets, my dog stayed at home!) This scan identified the exact location that the cancer was in my body, information that was needed to understand what my treatment plan would look like. When the scan came back, with lots of black marks all over my body, this meant a pretty intense treatment plan.

Once results were processed, I found out I would have to endure 6 cycles of chemotherapy each lasting 4 weeks ; 2 intensive and 4 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. Unsurprising as a 17-year-old girl. Sadly, after the first 10 days of treatment it started happening. This was incredibly hard to come to terms with and I felt that no one around me 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 this 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.

Over the next 6 months from November 2019-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 as time went on. As I was understanding how my body reacted to different types of chemo, the doctors and nurses around me were always helpful with handling the side-effects and they gradually became more manageable.

As part of my treatment, I was prescribed steroids which also resulted in various side effects. The worst was that my face blew up like a balloon. This did not help me feel any better about my appearance. My friends and I look back on pictures from this time and I’m unrecognisable.

On top of physical side effects, I 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. Everyone experiences this to a different extent, so I didn't know how long it would last, which made it even worse.

It was like trying to get dressed in the morning, but the room was pitch black and my clothes were all over the place...I didn't know how long it would last, which made it even worse.

Sophie, talking about chemo brain

My treatment plan also included radiotherapy because the cancer hadn’t completely disappeared after 2 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 also 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. The procedure wasn’t too invasive and went well.

Having to travel an hour each way, every day, for 3 weeks to radiotherapy was exhausting, especially because the radiotherapy itself was only a 20 minute session each day. Luckily, the radiotherapy was successful and by July 2020 I was in remission!

This was a huge achievement and by September 2020 I was starting my degree at the University of Birmingham. Unlike most people, lockdown worked in my favour as I didn’t miss out on all the activities one would usually do post school graduation, and I didn’t have to do A-levels!  (Every cloud has a silver lining.) As a result, I was awarded my predicted grades and accepted by UCAS as normal.

It didn’t take long for the reality of what I had been through to sink in. About 9 months after treatment I started therapy, and still have regular sessions now. Being ill impacted my life in so many more ways than physical, but it took me a while to come to terms with that. Having cancer wasn’t just the chemotherapy and the hair loss and the physical side effects, there were so many more things that came after the treatment itself. In hindsight, I shouldn’t have underestimated the impact of what I had been through had on me, and will have on me for probably the rest of my life. My outlook on life and the way I live it has changed, and that’s okay even if it’s not what I originally planned. Chemo brain still poses as a problem every now and then, but the effects have gotten much better.

I think the biggest thing for me that I’ve been able to reflect on recently is that 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 as a person. It’s a large part of who I am, but it’s not everything that I am. It’s taken me a long time to come to that conclusion, but I got there.

I know that going through something like this at a young age can be terrifying and you may feel like no one understands, but I hope that reading this will be helpful.