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Brooke's story

Brooke's story

Patient

September 1, 2021

In September 2013, I was 17 years old, always busy, and working hard at my A levels. At the end of August I had started to feel unwell. I had a persistent cough, I was very tired, and at night I was sweating and having extreme abdominal cramps. These cramps were so severe that my mom would end up taking me to A&E to receive stronger pain relief. In between these visits to A&E I also visited my GP to ask them about my persistent cough and cramps. They said my chest was clear and my cramps may be diet related, so I was to keep a food diary. On the fourth admission to A&E, the doctor took my bloods and said they would probably send me home. I had a feeling he thought I was wasting his time. But he came back straight away, explaining to me that there were some abnormalities in my bloods and they would keep me in that night.

The next morning at 9 AM, a haematology doctor came to see me to explain they suspected acute lymphoblastic leukaemia, and because of my age they would be transferring me to a teenager and young adults unit. Me and my family couldn’t believe it, we thought they’d made a mistake.

I was transferred on 30th September 2013. I had a bone marrow aspirate and a lumbar puncture and awaited the results. I remember screaming the ward down as I was wheeled in because I could see other patients with no hair, vomiting, and looking very unwell. All I could think was surely not, the doctors must have this all wrong. The next day it was confirmed I had acute lymphoblastic leukemia, and if I had stayed another 2 weeks at home I would have died. This hit me hard because I couldn’t take it all in, I felt like it was a nightmare and that I would eventually wake up and everything would be ok. I started chemotherapy and on that Friday, I signed up to the UKALL 2011 trial. The process was so quick, my life had well and truly been turned upside down.

I was very naïve back then. I thought only older people could get cancer, not someone as young as me. I struggled to retain any information and my mental health suffered. I went through a stage where I couldn’t talk to anyone, not even the doctors. I had to receive help from a psychologist to help me understand and cope with my diagnosis and treatment. My main barrier was having panic attacks as soon as I saw my chemotherapy being hung on my drip, I couldn’t get my head around that I was willingly letting myself be poisoned to make me better. How could I be so calm, when I knew these drugs would make me very sick, lose my hair, lose my identity? I was no longer a normal 17-year-old girl, I was known as the girl with cancer.

My first 4 weeks of treatment were as an inpatient, and then I was allowed home to continue it as an outpatient. However, I always became too poorly to stay at home, so spent the most part of 8 months in hospital. When my hair fell out, this was very traumatic for me and my mom, who had to cut the matted hair off and eventually shave my head. But I knew once it was gone, what hair came back after that would hopefully be for keeps.

I did have delays in my treatment because of infections. Especially around Christmas 2013, when I had a really bad fungal chest infection that was keeping my blood counts very low, meaning I wasn’t fit for chemotherapy at that time. The doctors told me that if my counts didn’t recover soon, they would have to look at other lines of treatment and I might not be able to stay on my trial.

I suffered with a lot of nausea and vomiting, fatigue, and weight loss. It’s funny how you learn to cope with this day in day out, you start to never complain because you know nothing can be done about it. All you want is for the treatment to be working and finished as quickly as possible. To start with, it felt like I wasn’t strong enough to get through it. I was missing out so much at school, watching all my friends move on without me was heart-breaking, my life had stood still.

However, I learned to gain positives out of my illness. I started to raise awareness with a charity about leukaemia and fundraise. I decided to make goals for the future. What do I want to do? Where do I see myself?

This was a great coping mechanism and motivation for me. I struggled when my treatment finished not to worry about if my leukaemia will come back, to this day, I still worry, that never goes away. But I’ve learned to try and live in the moment because tomorrow is never guaranteed. Since 2013, I’ve achieved so much in my life, I can’t thank everyone enough who helped save my life. Having acute lymphoblastic leukemia changed me for the better, I appreciate life so much more. Unfortunately, on my journey I met some amazing people who didn’t make it, but now I try to speak out and raise awareness of acute lymphoblastic leukemia to hopefully help save someone else’s life.

I am lucky enough to be a haematology nurse now, caring for blood cancer patients, trying to give something back and make a difference. I am so passionate about my job and feel so lucky to be here today to take care of blood cancer patients and tell my story.