Faye

Back in 2022, I was busy working as a Claims Handling Administrator, seeing friends and generally living life like any other 21-year-old. Looking back, I didn’t feel right for most of that year but I couldn’t work out why so I just ignored it and hoped things would get better. I felt lethargic, weak and had no energy. I was young and had no major symptoms that were red flags, so I thought perhaps it was normal to feel this way.

In September of that year, I found a lump on my collarbone. While I didn’t see this as a concern at the time and thought nothing of it as it was small and moveable, I was prompted to go to the doctor by my mum who used to say all lumps should be checked no matter where they are. Being young and naïve, I resented booking an appointment at my GP surgery, but I went to have my lump looked at by a specialist nurse. As I was not experiencing any major symptoms that were a cause for concern at this point, it was suggested it could be a lipoma (a non-cancerous fatty lump of tissue). I carried on with life and just kept an eye on the lump in case it got bigger.

As time went on, I started to develop further symptoms which were picked up by the people around me.  For example, they noticed I became out of breath walking up the stairs, even though I was keeping fit and active by going to the gym.  I was also extremely fatigued - falling asleep at 8pm on a Friday and Saturday night and then napping all day Sunday and even after all that sleep I was still so tired. Again, I thought this was normal and just me needing to catch up with sleep from the working week. I started to get a cough whenever I was lying down, especially in the morning when I would wake up, but I thought this was the start of a cold or some type of minor illness.

When I found another lump two months later on the side of my neck, I went back to my doctor. After numerous blood tests, an ultrasound on my neck, a lymph node biopsy and a PET scan I received my diagnosis of stage 3 Hodgkin lymphoma in January 2023 and by this time I was experiencing most of the classic symptoms of lymphoma, including night sweats, weight loss and unexplained fevers.

I started 6 months of ABVD chemotherapy treatment in February 2023, following a round of fertility preservation. I had another PET scan after four chemotherapy sessions which showed a complete metabolic response. This meant I could cut down to 3 chemotherapy drugs rather then 4, which was positive as it meant less drugs going into my body – lessening the chances of long term problems as a result of treatment side effects.

Hearing the words ‘you have cancer’ is the most terrifying thing anyone can ever say to you, and not something you expect to hear at the age of 21. Asking a doctor if I’m going to die was not something I thought I would hear myself say at such a young age, but I just wish I could go back to that day of diagnosis where my world fell apart, and show myself this journey isn’t as scary as I thought it was going to be. My life wasn’t over – it was only on hold. This is why I want to raise awareness. I hadn’t heard of lymphoma before so it didn’t even cross my mind. I wasn’t aware of the symptoms to look out for, so it was a shock to be told it is one of the most common cancers in young people. I didn’t even know lymphoma was a blood cancer until I looked on the Lymphoma Action website. This is why I believe there needs to be more awareness about lymphoma, and why charities like Lymphoma Action are so important.

It’s a scary journey with ups and downs but I hope in sharing my story I can help people to recognise symptoms and encourage them to get themselves checked if they experience symptoms or find a lump, and to trust their gut when something just doesn’t feel right.

Faye shared her story with us as part of our Let’s talk lymphoma awareness campaign which ran throughout Blood Cancer Awareness Month in September.