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A few months prior to my diagnosis, I started to feel really fatigued, but when I first went to the GP I was told to take iron supplements to help my tiredness levels. I then started to get migraines on the right side of my head and became very weak – my hands were shaky, and I would lose concentration at work quickly. My GP tried to make me see a neurologist for my migraines and gave me a course of medication which didn’t help. I was insistent on having detailed blood tests as I could tell something was wrong, but didn’t know what. I had four blood tests that came back fine, yet after my fifth one I received a call from the Ambulance Service informing me they were on their way to collect me.
The day I was admitted to hospital, I was told I was anaemic and needed blood transfusions overnight. I was hopeful that that was it and I would be leaving the hospital the following day. However, the next morning I was told that abnormal cells were found in my blood and further tests needed to be undertaken. Without knowing what the procedure involved and without being offered sedation, I went through my first bone marrow biopsy procedure. Later that afternoon, a consultant who I had never seen before came into my hospital room to tell me that I had t-cell acute lymphoblastic leukaemia (T-cell ALL). No one in my family has had blood cancer before, so the word was new to me. I didn’t know how ‘bad’ it was; all I knew was that I would be in hospital for a long time from that day. Being diagnosed during the COVID-19 pandemic made it even harder for me, as I had to tell my parents over Facetime, and I knew the next time I would see them in-person, I would look different and wouldn’t be the same person.
I have completed three rounds of chemotherapy and a stem cell transplant, and have been in hospital for the majority of the first eight months post-diagnosis. Even though I was in remission after my third round of chemotherapy, I was told I needed to have a stem cell transplant due to the aggressive nature of my leukaemia and the likelihood that it would return within a few months without the transplant.
Even though a lot of people assume that I am through the ‘worst’ of it, in many ways life post-treatment is more difficult than during. I am suffering from numerous side effects (skin rashes, bowel problems, extreme fatigue
, etc.), and the loss of confidence that comes from losing so much of your old self. How we look on the outside is not a reflection of how we feel on the inside.
I am determined to use my story to raise awareness of leukaemia, and encourage more people, particularly Asian and ethnic minorities, to sign up to the stem cell register. Speaking about cancer is often a taboo subject in Asian communities, and it needs to be discussed more openly to help save more lives and spread awareness. The fact that there was no stem cell transplant match for me on the global registry was really frightening, and I feel so lucky to have the option to use my siblings as my donor – for many, this is not the case. A lot of it is about educating these communities about the process – for example, the actual process of donating blood or donating stem cells for a transplant can take just a few hours, but help to save someone’s life. It sounds like a scary procedure, but helping people to realise how quick and easy the process is to sign up and donate will help to find potential matches for more blood cancer patients.
Many people ignore potential symptoms, and from speaking to other cancer patients, GPs also find it difficult to diagnose leukaemia. With the type of leukaemia I have, it needed to be treated immediately due to the aggressive nature of it, and so it is important to be aware of the potential symptoms and be persistent with your GP if you feel you are not being taken seriously enough. I had to repeatedly ask for blood tests as I knew something was not right with my body. Unfortunately, it can take a lot of effort and persistence to be listened to, but it is worth it.