I’ve always been quite a sickly person, so I didn’t take much notice when I started feeling slightly unwell at Christmas in 2016. I was feeling very lethargic and tired, I was quite weak and kept fainting, I had bad migraine-like headaches in the back/base of my head which would stop me from going to university. I also had a lot of bruising, many of which were unusual — either in unusual places, like my stomach, or strange shapes, like ring-shaped with a non-bruised, raised centre. Also, I had a lot of vaginal bleeding, and was essentially on a period for about three months. My stomach was swollen, which I later discovered was my spleen. Nearer to my diagnosis, I started feeling sick and vomiting regularly. I also had a mysterious problem with my shoulder/arm, which led me to being in a sling, later considered to be because I pulled my muscle easily due to my anaemia.
At the time, I was partway through my second year at university in Memphis, Tennessee, and so I returned to the US for the second semester in January. When the symptoms didn’t go away, I went to see the university’s nurse, who told me I was worrying for nothing and that I probably just had a water infection. Placated, I stopped worrying about my symptoms and assumed the antibiotics would get rid of them. However, they didn’t stop, they got worse. People would stop me in the street and ask me what happened to my arms when they saw my bruises. By the time the headaches started, it began to affect my studying. I stayed in bed most of the day, only leaving my room to go to mandatory classes. I began to fall slightly behind on my work, but luckily my professors were understanding. At this point, I returned to the nurse — I was then told I had another UTI, my headaches were stress-related, and I probably just bruised my arm in my sleep. Again, I took the medication prescribed but didn’t feel better.
At this point, I was getting quite worried. I was thousands of miles from home and didn’t fully understand how the healthcare system worked in the US. When you’re ill, you just want to be with your family, so it was terrifying feeling so alone and ill. Then the symptoms got worse — I passed out during presentations and threw up during lectures. People began commenting that I looked pale and weak. It was assumed I had a bad dose of the flu, and I was lucky that my professors and friends were very supportive during the whole experience. It got to the point that, during my final exams, I fainted in the middle of a major test and had to retake it a few hours later. The fainting, along with the other symptoms, got worse, but again the nurse just told me I had a UTI — when I asked, she said that there was no need for a blood test. Given that my family has a history of auto-immune diseases, I was worried that maybe that was my problem, and asked my mum to book a GP appointment for when I got back to the UK.
When I arrived home, my family were immediately worried about how sickly I looked, and how subdued I was acting. My GP didn’t think there was anything seriously wrong with me, but, upon my insistence, booked me some blood tests for the end of the month.
Over the next few weeks, I got much worse. I started vomiting regularly and barely eating anything. Many days, I could barely move for the exhaustion and dizziness. I also got a mysterious problem with my arm that the nurses I saw could not figure out — they thought I may have pulled a muscle but as I hadn’t done anything strenuous, couldn’t understand it.
The evening after my blood tests, I was watching The Departed at my sister’s house when my mum phoned to say the hospital were trying to get in touch with me. I called them, and they wanted me to urgently go in to Heartlands Hospital, which is not my local hospital and would take about 50 minutes to get to. They sounded very nervous on the phone, telling me there was a problem with my blood that needed further testing. It was obvious that it was serious, and I was terrified. My dad and sister took me to the hospital, where I was put in an examination room overnight. By 3am, my family had to go home to get some rest, and so I was left by myself. It was the first time I’d been alone in a hospital – I felt like an adult for probably the first time, and it was terrifying. I spent most of the night crying. By the morning, the consultant came to see me and he told me there was something wrong. I asked if I’d still be able to go back to the US at the end of the week, as I had planned, and he said no. He examined me, noting that my swelling was due to my swollen spleen, which could easily be felt. Then he told me he wanted to wait until my parents arrived before talking further, leaving me alone again. By this point, given that they thought I needed support for the diagnosis, I was pretty sure it was cancer. My phone had run out of battery and I had no way to contact my parents and find out when they were coming, so I had to wait hours before they arrived and I could finally be diagnosed.
I burst into tears the second I heard the word ‘leukaemia’. The doctor unfortunately had to take a phone call in the middle of the conversation, so we were left desperate for more information. We didn’t know there were different types of leukaemia and had no idea what chronic myeloid leukaemia (CML) was. My sisters rushed to the hospital and my brother flew in from Ireland. They sat my family down and explained everything to us, answering our questions. We were all in shock, so nobody really remembers anything they told us. My white blood count was over 550, which was over 500x more than what it should be, and I was severely anaemic and had an extremely low platelet count. At this point, they did a bone marrow biopsy to confirm the diagnosis, and then began chemotherapy.
I was in hospital for about two weeks. When they moved me to the oncology ward, I was given a private room and, because of my age, had a Teenage Cancer Trust TV and Xbox to use. I spent most of my time watching boxsets of my favourite TV shows to distract myself from what was happening. It was discovered that I have very small veins, making getting my blood extremely difficult. Sometimes it took up to eight different people and about five hours to finally get my morning bloods so that my chemotherapy tablets could be prescribed. Because of that, many of my tablets had to be taken in the night; this, however, was often forgotten, meaning my sister would have to call up the ward at 3am to remind them. Whilst in the hospital, I had to have a blood transfusion, which I found extremely difficult to get through — my family and I watched Mamma Mia and, by the time it was over, I’d forgotten about the transfusion and it was complete. My back wound from my biopsy didn’t heal correctly, leading to me waking up in a pool of blood twice, which was a scarring experience.
After my stay, I returned home still feeling very weak and ill and sick, largely from the strong chemo. A few days later, I was switched to imatinib, the tyrosine kinase inhibitor (TKI) used to control CML. My care was transferred to Good Hope, which was closer to me and had a weekly clinic run by my consultant. Things continued as normal and my blood count slowly returned to near-normal levels, and I was allowed to return to the US for my third year in August, almost three months post-diagnosis.
Before I went, I had my three-month test to check how the disease was responding to the medication on a molecular and genetic level. However, I got ill on the journey and remained extremely ill for two weeks, before I was forced to drop out and return home. While there, I was constantly vomiting, fainting and had a raised temperature. Upon returning home, I discovered that the results of my three-month test were not positive, and I was failing to respond to the medication. This was told to me by a new doctor who I had never met. He told me that my best option was a stem cell transplant and my siblings would need immediate testing. My brother again flew back from Ireland and he and my sisters were tested, with my brother being a match. However, the next week, when I saw my regular consultant, he told me there was no immediate need for panic, and they would check again to see if the lack of response was due to early testing and then change my medication. The new test showed a partial cytogenetic response, a complete change from the lack of response prior, and my doctors couldn’t explain it. By December, however, given my slow response and multitude of side effects, I was switched to dasatinib.
Afterwards, I switched my care to the Queen Elizabeth Hospital, as they have a Young Person’s Unit there. Since my transfer, I have stayed on dasatinib, and have been showing a good response. They hope I will have a complete cytogenetic response by December. While I still suffer from side effects, I’m beginning to learn how to manage them and hope to start at the University of Birmingham in the autumn.
I’m undergoing treatment. As far as I’m aware, I will have to take dasatanib, the TKI drug I’m on, for the rest of my life.
When I was diagnosed, I was so shocked. However, upon reflection, I now realise that my symptoms were all the obvious, major symptoms of leukaemia. It’s shocking that it took so long for me to be diagnosed when the signs were all there. Hopefully, if more people become aware of how to spot the symptoms of leukaemia, it can be diagnosed quicker.