I (Amy, left) was diagnosed with blood cancer for the first time in 1991 at the age of 3 (Image: Amy Sutton)
My mother tells me that when I was three I started complaining of joint pain and was always exhausted out of nowhere.
At first she had no idea what was going on and thought I just wanted attention.
But after small bruises appeared on my skin, she took me to the family doctor and within a few weeks I was diagnosed with Acute Lymphoblastic Leukemia (ALL) – a type of blood cancer – in 1991.
I was treated with chemotherapy and went into remission.
But it wasn’t until two years later, at the age of five, that I relapsed. Oddly enough, I only have fond memories of that time, like going to the hospital canteen for a midnight snack with my mother and brother and being verbally abused for riding my drip stand. I am so grateful that mom managed to keep our childhood alive despite what happened to us as a family.
After the treatment, I went back into remission. When we first got this good news, my mom had thrown a big party to celebrate – but after my second diagnosis she said “never again”. This time it was about getting back to normal – we saw friends, drove to the UK for our little vacation and went back to school.
But it turned out that this was only the beginning of my journey with the disease. I have had leukemia five times now, most recently in 2018.
When I was eight, I got a terrible headache and my mother knew immediately that something was wrong.
Soon I was diagnosed with ALL for the third time – along with a brain tumor. The hospital where I was treated up to that point said that there was nothing more they could do for me, which was devastating.
Amy and her support staff at Royal Marsden Hospital (Image: Amy Sutton)
At that age, I had a better understanding of everything, including what death was, but I struggled to realize that they couldn’t save me.
Fortunately, a few weeks later a professor at Royal Marsden Hospital heard about my case – and suddenly I had options. I was offered radiation therapy and my first bone marrow transplant.
Before the transplant, you must undergo intense chemotherapy and radiation therapy to kill or weaken your old cells (and any cancer cells, since you must be in remission for a transplant). You will then be given cells from a donor via a drip.
You have no immunity at this point, so I was in the hospital in isolation, waiting for the bone marrow cells to be removed and new ones formed. It’s very scary as there are no guarantees that it will work, and it’s dangerous because your immune system isn’t protecting you.
Although the transplant was successful, I became weak and had to use a wheelchair. I was constantly sick from the radiation and didn’t fully recover until I turned 10, just before I started secondary school.
It was a pretty difficult time for me as I didn’t mix with a lot of other kids throughout my childhood so I was pretty scared of going to school. On the other hand, I really wanted to leave because I longed for normalcy.
Despite my health problems, I settled in well at school and was determined to catch up. I really enjoyed art and design and had great friends.
Amy and her older brother (Image: Amy Sutton)
Around Christmas everything changed again when I was 15. I thought I had a bad cold, however One day when I was relaxing at home, it began to affect my breathing.
My brother, then 17, was so concerned that he called my mother home from work. I was worried – I’d never had breathing problems before, but since it was a new symptom, it never occurred to me that it would be cancer again.
They took me to the emergency room and that evening I was diagnosed – this time it was chronic myeloid leukemia (CML), a form of the disease that affects different cells and generally progresses more slowly than acute forms like ALL.
Also, CML is common in men over 60, not 15-year-old girls. I was gutted. I wanted so much to do with my life and I was afraid that further treatment would hold me back.
My great team at Royal Marsden has struck a delicate balance between helping my education and watching the cancer progress.
I was first treated with imatinib, a form of oral chemotherapy, to control my white blood cells and stop the cancer from getting worse. It also had minimal side effects so I could go back to school, do my GCSEs, and apply for college.
Unfortunately, chemotherapy was a short-term solution – at some point I would need another bone marrow transplant. I really didn’t want another one because the rehabilitation from my first transplant was so intense.
I was also emotionally shaken when I was told I would only have lived five months if they hadn’t treated me. At the time I thought I was fine, but I remember being moody at school, which was unusual for me. I didn’t know I was shocked, but the news definitely changed me.
However, that didn’t destroy my ambition and I wanted to pursue my future plans. I made my first choice of college – the London College of Fashion – which was a dream come true. I love clothes and I’ve always been inspired by David Bowie who is so cool.
I think I’m drawn to him because I’m conspicuous too: when I was 15, I bleached my hair and dyed it red because of him. I was furious when people thought I did it because of Britney Spears’ hair color in her music video for Toxic that had just come out.
I met Carlos, my partner, through a friend at a night out in 2008 (Image: Amy Sutton)
Unfortunately, in my last term of my first year, the cancer progressed which meant I needed the transplant badly. I had it within weeks and finished college while in the hospital. Fortunately, it went smoothly and I was able to start my sophomore year four months later.
Although I was still on medication and had no hair, I firmly believed that cancer would not prevent me from achieving my goals.
The next 12 years were incredible. I moved out of my parents’ house, graduated with a degree in costume design for performance, and started my own hat making business five years ago – Amy the Hatter.
I also met Carlos, my partner, through a friend while going out in 2008. We clicked immediately; we have similar tastes in music, but most of all I could just feel that he was a good person. My life has been very hectic and he is very calm which I longed for.
Unfortunately, life threw another curveball in 2018. In January, I suffered from constant fatigue and felt pain in my spine. My doctor thought it was sciatica, which is nerve pain from an injury or irritation to the sciatic nerve. although an MRI showed nothing.
In March I was short of breath and struggled to walk. Concerned, I called 111 and went to A&E for a blood test. After seeing my results, I became incredibly scared when a nurse said I couldn’t go because a hematologist wanted to see me.
Carlos rushed to the hospital. I told him there was only one reason I needed to see a hematologist. Shortly after midnight, after an excruciating wait, the doctor confirmed our fears. My leukemia was back. I was 29 and that was my fifth diagnosis.
Carlos visited me every day during my transplant, sometimes staying over and sleeping in a chair by my bed (Image: Amy Sutton)
Carlos has been an amazing physical and emotional support especially after my recent diagnosis. He visited me every day during my transplant, sometimes staying with me and sleeping in a chair by my bed. All the sisters knew him and still ask me how he’s doing now.
My treatment – including my third bone marrow transplant – left me too weak to walk. In 2019, I also suffered from malabsorption, which meant my ability to digest and absorb nutrients had decreased, and malnutrition, a serious condition caused by my diet not containing the correct amount of nutrients
But with Carlos’s encouragement, as well as the physical therapy and gastrointestinal and nutrition (GIaNTs) teams at Royal Marsden, I learned to walk again and regained my strength. In fact, earlier this year I managed to run 40 miles all of January to raise funds for the Royal Marsden Cancer Charity.
I’ve been in remission since October 2018, but the fear of cancer returning is always there.
Every time I get a cough or pain, I worry. The fear can be overwhelming. However, I worked with a psychologist to help me deal with these feelings.
I can never convince myself that it won’t come back – it has happened five times – but I work hard not to let fear control me.
Last year Carlos and I got engaged in a nature reserve. It was pretty muddy so he had to squat down instead of going on one knee, but it was incredibly romantic – just us in a beautiful room.
Right now I’m focusing on planning our wedding for next year, which will be in a lighthouse in Scotland. I enjoy living my life my way, without cancer.
September is blood cancer awareness month. To support the Royal Marsden Cancer Charity’s call for a new research and treatment facility, the Oak Cancer Center, click here.
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