It started with bruising on Ellen's arms and legs

The beginning

I am Ellen and I am now 25 years old but I was first diagnosed with acute promyelocytic leukaemia, rare sub-type acute myeloid leukaemia (AML) when I was nine. My mum had noticed bruising on my arms and legs. These just seemed to be escalating, so we went to our local accident and emergency hospital on the Friday night and they did some blood tests. We were sent home from the hospital and told that they would be in touch if there was any issues. I was going away for my first big school trip to the Isle of Wight the following Monday for the week and I was so excited. I’d got the coach and a ferry there and I had just arrived at the hotel with all my friends. As I was having dinner when my headmistress called me over and said that there was an issue with the bloods and that my parents were on their way to collect me. Of course I was absolutely devastated.

Too young to know what was to come

We arrived at the children’s hospital the next morning. There I was diagnosed with leukaemia, and treatment started straight away. It was all very quick. I was so young that I didn’t really have any clue about what was to come. I had four blocks of chemotherapy with three to four weeks in hospital followed by a few days at home before treatment began again. I was really unwell, with all the usual chemotherapy side effects. My life was completely turned upside down. I was fortunate that I went into remission pretty quickly, and once treatment had finished life pretty much returned back to normal. I had a small amount of fatigue but apart from that I was fine and thrilled that my hair was beginning to grow back once again, and that I was back at school with my friends.

I had spots on the brain

Towards the beginning of 2008, I started having severe pains in my legs. I went to my GP a few times and he put it down to growing pains and that I needed to exercise more as I was a little overweight. The pain gradually got worse and one night it was excruciating. I can still remember that night as though it was yesterday. I also had a horrendous headache, and so my family took me to the hospital. A brain scan was done, and that weekend the doctor sent me home saying that it was just a migraine. A few days later we had a call from the hospital to say that the scan had shown “spots on the brain” and I was to come to the hospital immediately. I was told that I had relapsed. For me this was so much tougher to accept, as not only did I know what devastation was to come, but I was also a lot older and more aware of the consequences.

A third of my brain is dead

My treatment was very different this time round and I was bombarded with chemotherapy as I was diagnosed so late. I then went onto to have a massive stroke, causing me to be unable to walk, talk or do anything for myself. It was very tough. I had previously been an A star student and to suddenly be unable to even say my name was the worst thing that I have ever been through. They thought that it would never come back, but with determination and daily physiotherapy plus occupational therapy and speech and language therapy it slowly came back. A third of my brain is dead and I still have right sided weakness and memory issues but I am just so thankful to be where I am today.

I have multiple late effects

I then went onto have Arsenic treatment which is a chemotherapy drug. It was relatively new at the time and I found the treatment a lot easier to cope with than the usual chemotherapy. I was also on All Trans Retinoic Acid (ATRA), but unfortunately that caused very bad headaches and sickness which later got diagnosed as secondary intracranial hypertension, and I have since had a shunt inserted and had 12 brain surgeries to control it. Unfortunately I have now been left with multiple late effects including the secondary intracranial hypertension, chronic migraine, chronic fatigue, epilepsy, Postural Orthostatic Tachycardia Syndrome, Hypothyroidism, Urinary Disfunction and most recently I have been diagnosed with left ventricular systolic dysfunction (heart failure) most of which affect me on a daily basis.

I don’t think people realise that cancer impacts all areas of our lives, not only was my health affected but so was my education, friendships, life skills and my day to day life too, as well as changing my family’s life too. Having cancer changes your life in aspects you wouldn’t automatically think about.

I’m thankful every day to be alive

All of these conditions have been caused by the treatment that I had, but I most definitely don’t want anyone reading this to be scared by reading my story. It is pretty unusual for people to have all of these late effects that I do, but it is also my reality, and I feel that there needs to be more awareness for late effects and that more people need to be talking about it. This is both in the medical field and also in the general public too. I have really had to fight for my conditions to be acknowledged and diagnosed and I don’t want anyone else going through the same fight that I have had. Although I have all these late effects I feel thankful every day to be alive and I appreciate the little every day things in life – I think that is what cancer has taught me. I’ve also learnt over the past few years how important it is to be kind to yourself. We live in a world where everything needs to be done now, and we are all striving to achieve the most that we can, but I think when going through a childhood cancer diagnosis, treatment or living with late effects, it’s so important to take things day by day and be kind to yourself (that includes parents/carers too!).

Research into childhood cancer is so vital

When I was diagnosed with the left ventricular systolic dysfunction two years ago, I knew that something needed to change and that there needed to be more awareness for the late effects of childhood cancer, so I started an Instagram page to raise that awareness, share peoples stories and to connect others going through the same thing. I want to continue to grow this as much as I can. I connected with Children with Cancer UK a few years ago at a charity event and I realised more than ever why the charity funds vital research into childhood cancer. Ultimately we need the research to have less invasive treatments so that the risk of late effects is reduced and people’s lives aren’t affected by late effects.
Ellen, March 2022