Updated: Sep 29, 2022
At the age of 24, Emma’s summer in 2021 took a turn for the worst after suffering from a bad strain of COVID-19. However, when intense headaches, bone pain and breathlessness began to surface after it passed, Emma knew something was wrong. After navigating her way through several misdiagnoses, she was later diagnosed with acute lymphoblastic leukaemia (ALL). Here, she tells her Spot Leukaemia story…
“July 2021 is when it all started – I suffered with a bad strain of COVID-19. After 10 days, I then started having bad head pain for a full week, but it wasn’t anything like a regular headache. Chest pains then came, which later developed into fluid on my lungs; it was the most painful thing I had been through. Alongside this, I was also experiencing shortness of breath, bone pain, pale skin, unexplained weight loss and weakness.
Because of my symptoms, I went through many misdiagnoses, such as long COVID, fibromyalgia and kidney stones. I had been back and forth with my doctors more than a dozen times, constantly prescribed medication to hide the symptoms. However, the pain relief was never good enough and I would lay in bed in agony for the most part of three months. I had an ambulance house visit, out of hours hospital visit and an A&E trip until a doctor at the surgery finally referred me to the acute medical unit (AMU). They didn’t have the answers either. I stayed over in AMU, but it still took one or two months to get the last blood test that would eventually lead to my diagnosis.
After having that last blood test, I was in excruciating back pain; my family were trying to ring up the hospital directly when we then received a phone call from them. I thought it must’ve been because my mum had been trying to ring. From that one phone call, I was five minutes up the road in the hospital and ten minutes later, I was told it was probably leukaemia or lymphoma.
I was in a state of shock for two weeks (maybe even three) after hearing my diagnosis. I didn’t shed a tear or anything, and I am such an emotional person normally. I think at the beginning it’s harder for those who are around you. I had no prior knowledge of leukaemia; all I thought was that if you get cancer, you die. I didn’t know how big cancer was and leukaemia is a different type of cancer and so on.
From hearing the words leukaemia, I waited about five days or a week before I knew it was acute lymphoblastic leukaemia (ALL), how it was going to be treated and whether it was curable. That week felt like a month; it’s bizarre that it was a week. I was convinced it was leukaemia, and my worry was whether I was going to die or whether I was going to live.
My consultant was really good; he came and spoke with me the same day the word leukaemia was used. He told me it could be a million and one things but told me what was going on with my bloods.
I spent three weeks in hospital and was then transferred to the young adult’s ward. I was told that the next few months would consist of spending a lot of time in the hospital and to not make any plans for a while. I was told I was going to be on chemotherapy for the next three years. I am currently going through treatment, and I now have two years left, but I am slowly beginning to reach my maintenance phase. There are no leukaemia cells, but I have to continue with my lengthy treatment plan.
I recently received a second positive COVID-19 test whilst being neutropenic, but it just felt like a bad cold. It did bring up some anxieties because I had caught it around the same time I did last year. This reminded me I have been going through a lot and it’s been a whole year, which is hard to get your head around.
Before my diagnosis, I was becoming a professional belly dancer; I was fit, and I was very spiritual. I attended dance workshops, did a lot of yoga, attended moon circles and meditated regularly. Health and well-being were at the forefront of my life.
When I was diagnosed, I thought everything was going to be taken away from me – especially my long hair which had a lot to do with my spirituality and dance career. I never cut my hair for this reason, it was all intertwined and I thought it was going to all be taken away. It took a few weeks (perhaps even a month or two) to realise that I could still be spiritual, I could still believe what I believe, and that I could alter my yoga sessions, dance sessions and my gratitude for smaller wins. I realised I could still be healthy even though I was forced to eat hospital food sometimes and take steroids that made me crave meat. I found my own balance; health looks different on everyone.
What I realised after those few weeks was that I was even more spiritual than before. It is what helped me accept my journey. It helped me see that we are far more than what we look like on the outside and how people view us. I thought I knew that before, but to fully accept my bald head has been the most beautiful self-love journey. I realised we can all love ourselves just that little bit more. Always.
Spot Leukaemia is important because if someone had taken the time to think about my symptoms and consider something other than long COVID, I wouldn’t have been left in pain for three months. I felt completely pushed aside from the doctor surgery and even the hospital, paramedics and A&E staff. I would have been taken more seriously and therefore not had to endure so much pain over such a long period of time. I would have been given the appropriate pain relief and felt more emotionally supported by the medical staff that came across me at that time.
The signs and symptoms need to be spread across doctor surgeries and to the public, so we can all help each other realise what could be going on in our bodies. This means we can then get not just the medical support, but the mental support we need whilst suffering the first signs and symptoms.”
Emma’s symptoms of leukaemia were:
Bone and joint pain
Are you currently dealing with similar symptoms to Emma’s? If so, contact your GP and ask for a blood test.
Early diagnosis saves lives.