Meet Ciara, diagnosed with Acute Myeloid Leukaemia, aged 17

Meet Ciara, diagnosed with Acute Myeloid Leukaemia, aged 17

Hello, my name is Ciara and in April 2016 I was a normal 17-year-old, studying hard for my AS levels. My real passion was rowing. I took part in high level competitive races and so was fit and healthy. That’s why when I started to feel generally unwell and noticed some unusual bruising, I went to see my GP.

They quickly referred me for blood tests at our local hospital the next morning. I was in school later that day when I received the call to go back hospital. Once there, the team broke the news to me that I had been diagnosed with high risk Acute Myeloid Leukaemia.

I never thought I would be one of those statistics. One of the seven young people diagnosed every day in the UK. It came as a huge shock to me and to my family. Because of the type of cancer I was diagnosed with, treatment began almost straight away and I was whisked into three rounds of intensive chemotherapy as an in-patient at the Royal Marsden.

Over the course of five long months, I had just two short weeks at home before I was admitted for a stem cell transplant. Due of the type of treatment I required, I had to be isolated in a side room on my own. I was only allowed a very small and limited number of visitors due to the risk of infection.

Isolating was very difficult at times, especially in a hospital environment without home comforts or being able to see my family all the time. Sometimes it felt like the days were never-ending! I quickly realised that having a routine to the day helped me a lot mentally and made the time pass quicker. I kept in contact with friends and family through messages, social media and by phone, but the phone signal in hospital often made this upsetting and frustrating.

I had quite a few complications whilst having my stem cell transplant, which meant that I was an inpatient at the Royal Marsden or my local hospital until April 2017. Whilst it was a relief to finally be home at last (albeit with lots of outpatient appointments and clinics still) I soon understood life wasn’t about to just flick back to normal.

I found it very difficult to come to terms with realising how much independence I had lost and how much life had changed since my diagnosis.

My friends were at college/sixth form and preparing to go to university or travelling on gap years and I was still needing help with basic tasks such as washing and dressing, and my mum had become my full-time carer.

I was very weak and needed to use a wheelchair for a while. I found it quite upsetting using the wheelchair initially - I struggled with the idea that it had only been a year ago when I was rowing 12km a session and how much my fitness and health had changed since then.

It was during this period that one of my friends at the Marsden mentioned a Teens Unite event they had been on. They had really enjoyed it and had met some other teens they had been keeping in contact with and they now had a support system from people who really understood their situation.

I looked at the Teens Unite website and registered. My first ever event was a Mother’s Day Afternoon Tea. I felt a bit daunted beforehand as I wasn’t sure what to expect and my confidence was not what it used to be, but I am so pleased that I went.

It was lovely to meet other teens who were at a similar stage in treatment to me as well as those that were further ahead and doing well. My mum also found it really reassuring to speak to other parents and felt inspired by many of the teens attending.

I briefly returned to sixth form after having been in isolation for so long. I was so excited to have some sort of normality again and be with people my own age, but it was short lived- I picked up several infections and became very unwell again.

I had to finish my A levels from home, and it was during this period that Teens Unite events became even more important as I was still isolated from people my own age. Teens Unite helped me build my confidence and enabled me to try activities that I had never done before, all whilst being with other people who knew what it was like to be going through/recovering from treatment.

I have been on cooking days, the Activity Stay, the Reunion Stay and going to the Shard, to name just a few! I have made lifelong friendships through the charity which has been invaluable and the Teens Unite family is such a safe and positive space. They have provided me with ongoing support as I suffer from a chronic condition as a result of my transplant – their support is never ending which is amazing and I feel incredibly lucky to have them.

Many teens, including myself, will be strictly self-isolating because of COVID-19 at the moment. This is very difficult, particularly with so many uncertainties around the length of time that high risk groups such as cancer patients will need to isolate. Whilst the general public (at present) are being advised to practice social distancing where possible, many teens and their families will be on heightened isolation precautions.

Though I have spent periods of time in isolation myself for cancer treatment, being in isolation again due to COVID-19 has been challenging. It has reminded me of when I was extremely unwell during my transplant treatment period. It is also a very worrying time for me and my family as I fall within the high-risk group due to ongoing respiratory issues. Because of the risk to teens meeting for events in person, Teens Unite have organised digital group activities which is enabling us all to keep in contact with each other and helping to reduce our feelings of isolation and loneliness.

I took part in their very first digital session, a Meet & Make and it gave me something to look forward to and was such a positive experience for myself and the other teens. Then last Friday I was able to join in on the Yoga & Breathing Techniques session which has already been useful for managing my anxiety and stress at such a difficult and uncertain time for me.

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