Many cancer units treating children have a brass bell attached to the wall. Ringing it signals the time when the children have finished their treatment and can finally start to get on with their lives.
These chimes mark a huge milestone for them and their families, and provide inspiration for fellow patients. When I was diagnosed with cancer, aged five, these bells of hope did not exist. Now, many years after being discharged from hospital, I know that beating this disease is not quite as simple as the ringing of a bell implies.
Because now, aged 23, I am still living with what I know will be a lifetime legacy of my cancer.
I may be clear of it for now, but I am still impacted both mentally and physically by the toll it took on my small body all those years ago.
I was a happy five-year-old living at home in Hornchurch, Essex, with my mum Melanie, now 54, dad Ian, now 55, and my older brother, who’s 26, when I was diagnosed with acute lymphoblastic leukaemia (ALL).
This is a type of blood cancer that causes too many underdeveloped white blood cells to be released. It affects 810 people in the UK every year. It is the most common form of cancer in children.
The memories I have of that time are sometimes fuzzy and incomplete. I don’t remember being told I had cancer. I remember my parents telling me I was going to have to be in hospital frequently for the doctors to make me better. So I will never know if the long-term impact of the disease and its treatment was even explained to me.
I didn’t know that bones in my legs would not develop properly because of the time I spent bedbound and the chemotherapy. Nor was I told that my battle would leave a hefty dent in my schooling. Or that my teeth would forever be sensitive and stained from strong antibiotics pumped in to me to bolster my immune system.
These are a few of the permanent stamps that cancer has left on my body. Every day, they serve as an unwelcome reminder of my childhood trauma, and that my life will always be that bit more difficult.
My parents still don’t like to talk about it even now. The horror of their youngest child facing death is something they just don’t want to re-live. And who can blame them?
My body may no longer be fighting cancer, but the battles are by no means over. Because I was in hospital for months on end, bed-bound for the majority of the time, the growth of my legs was stunted.
I suffer stiff joints and aching muscles more than most people my age and I can’t walk for longer than 40 minutes without my knees stiffening up. Chemotherapy also stopped the healthy cells in my bones dividing, meaning they didn’t develop as quickly as they should have done. I have to live with the knowledge that, as a cancer survivor, I have a significantly increased risk of developing osteoporosis in later life. Then there’s my wretched immune system; hugely compromised by the antibiotics I was given as a child to fight off potentially lethal infections. Even 20 years later, I pick up everything going. Coughs, colds, sickness bugs, you name it. I’m now resistant to most common antibiotics so most of the time, there’s little doctors can do.
The chemotherapy also curbed the development of my red blood cells. It slowed the release of cells into my blood stream in order to stop the cancer spreading. But the number of blood cells circulating around my body remains lower than average, putting me at risk of dangerous blood clots.
I have to endure regular leg scans to check none of my arteries are blocked. But the more I realised the impact my childhood cancer can continue to have, the more I realised I had to do what I could to look after my health. I go to the gym three times a week, I eat healthily and I don’t drink much alcohol. My body needs the best chance of fighting any disease that might, one day, return.
The mental repercussions of cancer are almost tougher than the physical. Imagine living the rest of your life with the uncertainty that it could return at any time.
Even if doctors ‘cure’ someone’s cancer, it can still come back a number of years after treatment.
This means cancer experts are often unwilling to use the term ‘cure’ or ‘cancer-free’. Instead, they say you’re ‘in remission’. But remission can be partial, meaning some cancer cells remain in your body but are either too few to find, too few to cause symptoms, or are not growing. I was told I was in remission by doctors at The Queen’s Hospital in Romford days before my ninth birthday. But no one can say I am ‘cured’ of cancer for good.
Just a few weeks ago I noticed a new lump on my gum. That flood of anxiety swept over me – the ‘oh no, I am going to get it again?’
As a child, the chemotherapy sessions sent me into panic. It strikes most when I’m ill. One unusual freckle and I’ll hear the dreaded voice asking: ‘What if it’s back?’
Growing up with cancer, missing years of school, has made me an introverted, self-conscious adult. Losing my hair, randomly falling asleep in class and disappearing for months at a time wasn’t a recipe for popularity.
Aged five, a month into chemotherapy, I lost all my hair. I remember going to the girls’ toilet and a classmate saying I was in the wrong one. I didn’t understand – I was wearing a dress, of course I was a girl. Traumatised, I ran back into the classroom feeling like there was something wrong with me. I didn’t fit in. I’d return to school mid-treatment, after several months away, and everyone had their friends. There was no space left for me. Often, I’d become so teary and panicked that my mum would have to pick me up halfway through the day. I’d often be woozy during the day and feel an overwhelming urge to sleep.
My teachers bought me a bean bag that was kept in the corner of the classroom. It was my personal sleeping corner that no one else was allowed to touch. It still takes time for me to come out of my shell and make friends. I have to work out what I’m going to say in my head before I can speak to people.
Studies show that many cancer survivors have problems with memory and learning during and after treatment. High doses of chemotherapy or radiotherapy can cause problems with memory and concentration.
The low blood count caused by chemotherapy can make even the simplest tasks, like unloading the washing, impossible. It’s a phenomenon also known as ‘chemo brain’. Studies show that, especially for children aged five and younger, long-term cognitive problems often occur months or even years later. But poor memory is just the tip of the iceberg. Today, my maths ability matches that of a five-year-old.
Even though I had a tutor in hospital to bridge my gaps in education, I still struggled to catch up, especially in maths and science.
I scraped D grades in both subjects at GCSE. Even to study literature and film studies at university I needed at least a C in maths and science. My GP had to write a letter to explain that I was behind in maths because chemotherapy had affected my cognitive function.
Then, when I first left university, I applied for a graduate job in marketing that I desperately wanted.
But before the interview, I was asked to do a basic maths test. I couldn’t face it and pulled out of the process without even trying.
When I’m out shopping, if something is marked 30 per cent off, I stand staring at the label, clueless.
I rarely tell anyone who enters my life about my illness. I feel it would be like I was looking for attention. But with boyfriends it is different. There comes a point when I think I should probably mention it. But for some reason, there never seems to be a right time and months, even years go by without a word said.
My current boyfriend and I started dating two years ago. He found out about my illness 18 months into our relationship by mistake – he came to my house and saw childhood pictures of me with no hair. He reacted just as I imagined he would: kind, sensitive and understanding, if a little surprised that I kept it a secret.
Luckily, as far as I know, my cancer treatment hasn’t affected my fertility. But millions who have cancer as a child are not so lucky. Some studies estimate that up to a third of children with cancer will be left infertile as a result of their treatment.
I have no reason to believe I’ll have problems conceiving. But I know that when the time comes, cancer will be on my mind once again. Then there’s the worry that my genes are cursed; what if I give my children cancer too?
I have to remind myself of the research that shows the likelihood of childhood leukaemia being inherited is extremely rare. Cancer stole my childhood. Now, I’ll do all I can to keep its hands off my future.