I first became unwell at the end of 2021. I was 23 at the time, so I put my symptoms down to stress and being tired. I was having night sweats, a common symptom of lymphoma, but my main concern was that I felt a lot of pressure in my head which made me feel dizzy – particularly when lying down. Very unusually, I also noticed that the top half of my body was beginning to swell up.
At the start of 2022, I ended up in A&E with chest pains, and a CT scan showed that I had clots on both of my lungs. I was admitted to hospital, but it wasn’t until 8 weeks later after a PET scan that I was told I had cancer. This was because the location of the lymphoma, inside the main vein to my heart, made it difficult to diagnose. I had two biopsies taken, as the first was inconclusive, but it was eventually confirmed that I had high-grade non-Hodgkin lymphoma, which would need to be treated with chemotherapy.
Prior to my treatment, I was asked whether I would like to undergo fertility preservation. I only had a day to make my decision, but I met with an IVF consultant who explained that the hormone treatment involved could increase the risk of blood clots in my particular case. Despite the risk, we did go ahead.
Unfortunately, a mass was found on my heart a couple of weeks later where the lymphoma had grown from the vein into the right atrium. This had to be removed via open heart surgery, with chemotherapy then starting while I was in intensive care.
I received six rounds of chemotherapy between August and December 2022, before receiving a clear scan at the beginning of 2023.
Shortly after, I started to feel sick and would have headaches at the back of my head. I found that I wasn’t as focussed as I should be when driving, and thought perhaps I had a stomach bug or an ear infection. But further tests showed that I had traces of lymphoma in my brain. I was told my previous chemotherapy regimen wouldn’t have any effect on this type of lymphoma, so I was put onto a regimen specifically for central nervous system (CNS) lymphoma. I received four cycles of chemotherapy, and spent 12 weeks in hospital as an inpatient. During that time, I also had sepsis where the Hickman ® line in my leg got infected. An autologous stem cell transplant then followed, using my own stem cells, which meant I spent a further three weeks in hospital.
As I write this in September 2023, I have been out of hospital for over two months following my stem cell transplant. Since then, I have performed a couple of gigs and have another one planned soon. I have loved getting back to playing music but it’s still very early days for me. Up until now, I have just been focussing on finishing treatment, but as time goes on I am trying to compute everything that has happened. Cancer certainly makes you see life differently.
I have learnt so much, and met people I wouldn’t have done, but although I have tried to make good out of a bad situation, it’s hard not to compare myself with other people my age and feel like the odd one out. That’s why peer support is so important. I go out wearing a headscarf, and it is rare to see someone my age doing the same thing. Which is why it’s good to meet others in a similar situation and why I’d like to meet more young people affected by cancer in the future.
Of course I have asked myself – why did this happen to me? But in trying to raise awareness amongst young people, I want them to see that it can happen to anyone regardless of age and lifestyle. Just because you are in your mid 20s doesn’t mean it won’t happen to you. Maybe the question should be ‘why wouldn’t it?’
Claire shared her story with us as part of our Let’s talk lymphoma awareness campaign which ran throughout Blood Cancer Awareness Month in September.