Ellie Goody: my story

When 19-year-old Ellie started experiencing pain, fatigue and breathlessness, she was prescribed countless different medications, but nothing worked. Then, after what seemed like a lifetime, she finally discovered what was wrong - she had acute lymphoblastic leukaemia (ALL). Ellie shares her story here…

My diagnosis

“In 2022, I started experiencing aches and pains in my joints, fatigue and breathlessness. I was prescribed numerous different medications, but my symptoms continued. I found I was allergic to some of the drugs I was given, so I spent a lot of time in the run up to my diagnosis throwing up. I had a pain in the side of my abdomen which spread to the top of my shoulder. It got so bad that I eventually ended up in A&E. It was there that I had blood tests and the results came back abnormal.

It felt like it took forever to find out what was wrong with me. I went backwards and forwards to hospital, being poked all the time and needing a cannula every time I needed blood taken. I had multiple bruises on my arm from all the needles. It was about a week and a half after my first blood test that I was told I had acute lymphoblastic leukemia (ALL). 

I remember the moment when I got diagnosed. My mum and I were having a takeaway (she was having fish and chips while I had Oreo waffles). When my mum got the call, I was getting her takeaway and when I opened the door, I remember her screaming and crying as she was told that I had cancer. My mum then gave me the news and I started balling my eyes out. I immediately told my sister, dad and best friend – it was a shock for everyone. After we calmed down a little, I remember just wanting my dad, so he came to pick me up and I spent a couple of hours with him at his house. Then my mum called to say we had to go to the hospital to be admitted – we had to hurry and put a bag together so that my nan could drive us there.  

I spent a couple of nights in hospital before being transported to the Royal Marsden. The car journey there was awful – I was sitting in the back with no windows open, feeling utterly car sick, and it took way longer than expected because the driver took us to the wrong hospital by mistake. Once we arrived, I was wheeled to the teenage cancer ward through the empty hospital, but I felt totally out of it and only half conscious. 

For the first week in hospital, I was so sick. I only ate a bowl of cornflakes each day. I would throw up anything else and just went to sleep straight away because doing anything at all knocked me out. (My mum later told me that this was the first time she thought I was going to die). A week later, I started chemo and steroids. I didn’t find the chemo too bad, apart from my hair falling out obviously. But I hated being on steroids because they damaged my bones, to the point that my right knee was basically dying. I developed steroid-induced diabetes and gained a lot of weight because I was constantly hungry, nothing could fill me up. I had a hard time in hospital. I was there for such a long time and because I was in bed so much, I couldn’t walk properly. Before I went home, I had to learn to walk a bit before I could be discharged.

Living with leukaemia

When I got home my sister treated me to loads of my favourite snacks and self-care items – it was such a lovely thing to come back to. Once home, I concentrated on just getting better.  I went on daily walks with my mum to get my walking better, although I needed aids to help me. The first time I went out, I went to the Harbour Arms with my mum and sister. I had to be in a wheelchair as I couldn’t walk long distances, but it was the best day.

After a couple of weeks of letting my hair fall out, I finally plucked up the courage to cut it all off. I went to a salon to get my hair washed for the last time and then had it all shaved off. The hairdresser was so sweet, she didn’t let us pay, so we went next door and bought her some flowers. I remember my mum and sister crying, but for some reason I was totally chilled about it. To be honest, having my head shaved was a relief. My hair was so patchy, thin and itchy that having it shaved off was quite liberating. And I thought I looked good with it shaved.

In 2023, halfway through my treatment, I decided to start going to the gym. I wanted to build up my strength and also fix my dead knee from the steroids by walking on a treadmill. After a few months, my knee was fixed. I no longer get any pain and I went from doing only 10 minutes of walking to over an hour. 

I am still undergoing treatment, but have technically been in remission since early on in my treatment. I am about to start another cycle of maintenance chemo and am due to finish all my treatment in July 2024, nearly two and a half years after first being diagnosed.

In September 2023, I decided to sign up for college to study animal management. I wasn’t sure how easy it would be to co-ordinate going to college and having cancer, but it was good for me to challenge myself by doing something that seemed so scary because of my situation. My college is very understanding and they do all they can to help me when I need it.

Relationships and leukaemia

Finding a relationship while having cancer is difficult. Making the time to hang out with a guy is challenging, when one day you could be sick and the next you could have appointments and chemo. Plus, trying to explain your situation to someone who is not familiar with what you’re going through can be hard. Some people don’t know how to act around people who have cancer, so that can also be challenging. But I am lucky. I have found a boyfriend, Ollie, who is the most amazing guy in the world. He is so understanding and patient with me, always puts me first, makes sure that I’m feeling well and if I get sad about other people my age doing things I can’t do, he reassures me and doesn’t treat me differently to anyone else. He really is amazing and I love him so much.

Must mention

I must give my mum a mention. She has been the most amazing person throughout my whole journey. She has been by my side every step of the way and always puts me first, even if most of the time she should be putting herself first. She’s been there every time I’ve thrown up (she’s right there with a cup of water and some tissues to wipe my mouth), she comes with me to every medical appointment and she’s supported me when I break down on her shoulder because my hair is falling out again or because I’m not like other 19-year-olds. Even though we don’t have much money, she always does her absolute best to satisfy my cravings, especially when I was on steroids, and she knows exactly what’s going on with my treatment sheets and medication. I really couldn’t have got through all of this without her. I love you mum!”   

Support services

If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).

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