Naomi Roberts

My diagnosis

“I was diagnosed with acute lymphoblastic leukaemia (ALL) on 20th March 2020. I began to feel poorly around three to four weeks prior to this. I was experiencing fatigue, dizziness, bruising, night sweats, loss of weight and appetite, paleness, shortness of breath and a low mood. I had a doctor’s appointment which was cancelled due to COVID-19; however, my mum insisted I was seen as she could tell it was urgent.

I had my blood tests from the GP on the Thursday. Just two hours later, my GP called me back to say I needed two units of blood transfusing and a bone marrow biopsy, but from that I still didn’t think it was anything serious. On the Friday when I had the biopsy, shortly after I was told it was leukaemia and that I needed to start treatment straight away.

I felt really shocked at first, but also in disbelief that it was cancer as I didn’t actually know what leukaemia was at the time; I had heard of it before, but never really knew what it meant or how life-threatening it is.

Further on through the treatment, I didn’t really know how to feel other than a dull feeling in my body. It was like a heartache because I had lost myself, my identity and control of my life, which I have always had previously, so many aspects of my life changed, and I had no way to change any of it.

My experience of treatment was varied as some treatments I tolerated well, and others made me really poorly. The procedures didn’t scare me, such as the intrathecals or bone marrow biopsies – I was more afraid of the results.

However, through my stem cell transplant, I found it difficult even standing up – I couldn’t shower myself and I couldn’t eat for five weeks due to mucositis in my mouth, throat and gut. It was a harsh treatment, but it has got me to where I am today, and I am thankful for that and the donor.

Living with leukaemia

I am currently in remission and have been since August 2020. I received a stem cell transplant at the beginning of October 2020 due to my high risk of relapse. I am currently feeling well and healthy other than some post-transplant complications, such an anaemia and fatigue.

Often people do say that I look well now and seem completely back to normal, but there is a lot more that goes on behind closed doors that people don’t see. I also often have tried to hide the struggles I faced and the hard times from people who don’t live with me, as I preferred to just get on without it and play it down to make myself feel better.

I feel like this experience in my life has made me value what really matters, including my health and the health of my family and friends. It’s made me appreciate the small things a lot more as so much of your freedom is taken away and you become completely dependent on others. My mum and brother helped me so much throughout the journey and were there to support me and pick up the pieces no matter what.

I thought losing my hair would be one of the hardest parts of my journey; however, that wasn’t the case – it didn’t phase me when it came to it. My hardest struggle was losing my sense of independence, my freedom, my sense of self and being able to do what makes me happy. Everything was taken away from me and I had to be cautious about everything. I couldn’t go out on my own, I had to shield and became completely dependent on medical staff in hospital, or my mum and brother when I was at home.

Additionally, I always tried to bury my feelings and emotions as I thought this would help me push through. It did; however, when everything else came to a standstill and I was recovering from transplant, that’s when the trauma began to feel real, and I noticed ignoring my emotions hadn’t worked in the long run. However, my family are aware of how I feel and understand and try to be there for me whenever they know I am reflecting on it. It is such a tough journey, but with resilience and hope, you can get through it.

It is really important everyone looks out for the key symptoms of leukaemia as they are often dismissed as something unimportant. I did this myself – I always put my symptoms down to other reasons such as university or working two part-time jobs. I thought I was overdoing everything and didn’t listen to my body or research what it could be. With acute leukaemia and how fast it progresses, it is so important to be diagnosed early as it gives you a much better chance of the treatment working effectively.