Frankie-Ella Lloyd: my story

Frankie-Ella was 15-years-old when she was diagnosed with acute lymphoblastic leukaemia (ALL). When she first arrived in hospital, she met a girl who told her that her hair was beautiful and that she was sorry she was going to lose it. She reminded Frankie-Ella that ‘bald is beautiful’ and that they were on their cancer journey together. This filled Frankie-Ella with hope, strength and courage and in sharing her story here, Frankie-Ella hopes to do the same for others...

My story begins a year ago. I was experiencing headaches, was passing out and felt weak and fatigued all the time. The right side of my jaw was swollen and I was struggling to breathe. My legs turned purple and were covered in purple and red dots… I just knew something was not right. 

I visited the GP who told me I had an abscess on my face and prescribed antibiotics which should have helped to heal it.  But nothing got better. 

I went back to the GP who told me that they thought I was just being a lazy teenager who didn’t want to get up for school. Thank goodness for my mum who knew that when I said something was wrong, it was likely I was telling the truth. 

We then went to the dentist who told us to go straight to hospital. I was screaming in agony by this point, and I am so grateful that a wonderful nurse heard what I was saying and decided to listen. Finally, I was being heard! 

I was sent down to a ward where I was asked numerous questions.  I had a hunch the doctors were hiding something, but whenever I asked, they wouldn’t tell me anything. Then they asked my mum if she wanted my dad with her when they delivered the news. My parents were told first, and they came back in to my room with brave faces, not saying a word to me. 

All I wanted was to just go home at that point. I remember my parents telling me they would give me £50 if I stayed put. Looking back now, that was the best decision ever! 

The next morning, four specialist nurses came into my room, and my heart dropped. I don’t remember much, but out of the blur I just remember hearing the words, “You have cancer”. 

I didn’t cry. I just went numb. Was I going to die? I was 15 years old. That news broke me. They told me they were going to do all they could for me, but I just didn’t know what to expect. What lay ahead for me?

I was transferred to the UCH London Teenage Cancer Ward. My heart shattered looking at the patients in the beds around me – I realised that that was going to be like me. It was at that point that I found out I had leukaemia. A blood cancer that couldn’t be cut out like a tumour could – that’s how they described it to me. 

I began chemotherapy and instantly felt weak. I was in pain, suffered constant sickness and felt like I couldn’t do anything for myself.  My whole life had just been ripped from under my feet. Eventually, I was finally able to go home, on the condition that I continued with the oral chemotherapy and nurses could come out daily to give me the more intensive kind. I had to have a port line put into my chest and the operations continued to make me ill, with only the transfusions to keep me going. 

When I began to lose my hair, I struggled. I remembered the kind words of the girl I had first met on the ward, but I felt as if I was losing my identity. 

But I’m so glad that I’m now in maintenance. I used to be having operations all the time, so it is a relief to now only have one every three months. I have nerve damage as a result of these operations and am in a wheelchair for the majority of the time. I still have a visit to the hospital after my operations, but at least it is better than being there all the time! 

I am now looking at ringing the bell on the 23rd of December this year. With all fingers crossed I am finally starting to feel slightly better and hope at some point to get back to my usual bubbly, happy self.

I know things will never be the same, but I am happy to be alive and breathing. My health is something I will never take for granted again.

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