SERENA LIPSCOMB ensured that her cancer was completely free at the age of eight … but the physical and mental toll never ceases
Many cancer units that treat children have a brass bell attached to the wall. Calling indicates the time when the children have finished their treatment and can finally start 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 for five years, these bells of hope did not exist. Now, many years after being released from the hospital, I know that beating this disease is not as simple as ringing a bell.
Because now, 23 years old, I still live with what I know will be a lifelong legacy of my cancer.
I may not be sure for the time being, but I am still affected both mentally and physically by the toll my little body took all those years ago.
Now, 23 years old, I still live with what I know will be a lifelong legacy of my cancer (photo: Serena Lipscomb)
I was a happy five-year-old living at home in Hornchurch, Essex, with my mother Melanie, now 54, father Ian, now 55, and my older brother, 26, when I was diagnosed with acute lymphocytic leukemia (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 cancer in children.
The memories I have of that time are sometimes vague and incomplete. I don’t remember being told that I had cancer. I remember my parents telling me that I often had to be in the hospital to improve the doctors. So I will never know if the long-term impact of the disease and its treatment was even explained to me.
I did not know that bones in my legs would not develop well due to the time I spent and the chemotherapy. I also wasn’t told that my fight would leave a big dent in my education. Or that my teeth would be sensitive forever and stained by strong antibiotics that were pumped to me to strengthen my immune system.
These are some of the permanent stamps that cancer has left on my body. Every day they serve as an unwanted memory of my childhood trauma and that my life will always be that little bit harder.
My parents still don’t like to talk about it now. The horror of their youngest child who is confronted with death is something that they simply do not want to experience again. And who can blame them?
Infections, colds and bone scans …
My body may no longer fight cancer, but the fighting is not over yet. Because I was in the hospital for months, tied to bed most of the time, my leg growth was hampered.
I suffer more from stiff joints and muscle aches than most people my age and I can’t walk longer than 40 minutes without my knees becoming stiff. Chemotherapy also stopped sharing the healthy cells in my bones, which means they didn’t develop as quickly as they should have. I have to live with the knowledge that as a cancer survivor I have a considerably increased risk of developing osteoporosis later in life. Then there is my miserable immune system; enormously affected by the antibiotics I received as a child to fight potentially deadly infections. Even 20 years later, I pick everything up. Cough, cold, germs, you name it. I am now resistant to the most common antibiotics, so usually there are small doctors who can.
Chemotherapy also inhibited the development of my red blood cells. It slowed the release of cells into my bloodstream to stop the spread of cancer. But the number of blood cells circulating around my body remains lower than average, so I am at risk for dangerous blood clots.
I have to pass leg scans regularly to check if my arteries are blocked. But the more I realized how big the effects of my childhood cancer can continue to be, the more I realized that I had to do what I could to take care of my health. I go to the gym three times a week, I eat healthy and I don’t drink much alcohol. My body needs the best chance to fight any disease that could return one day.
My fear that it might come back anytime …
The mental consequences of cancer are almost more difficult than the physical ones. Imagine living the rest of your life with the uncertainty that it can return at any time.
Even if doctors ‘cure’ someone’s cancer, it can come back a few years after treatment.
This means that cancer experts are often unwilling to use the term “cured” or “cancer free.” Instead, they say that you are “in remission.” But remission can be partial, meaning that some cancer cells remain in your body, but are either too little to find, too little to cause symptoms, or not growing. I was told that I was in remission of doctors at Queen’s Hospital in Romford, days before my ninth birthday. But no one can say that I am “cured” of cancer forever.
Only a few weeks ago I noticed a new piece on my gums. That stream of fear flew over me – “oh no, I’m going to get it again?”
As a child, the chemotherapy sessions sent me in a panic. It is most noticeable when I am sick. An unusual freckle and I hear the dreaded voice asking, “What if it’s back?”
Pictured: Serena of five, around the time she was diagnosed, with her mother Melanie
Juvenile plague arts still haunt me
Growing up with cancer, missing years of school, has made me an introverted, self-aware adult. Losing my hair, falling asleep randomly in class and disappearing for months on end was not a recipe for popularity.
In remission? Where to get support and advice
It is estimated that 60 percent of the 35,000 survivors of childhood cancer in the UK will develop a problem regarding their treatment.
These may include learning difficulties, abnormal bone growth, heart problems, fertility problems and an increased risk of future cancers.
For the first year they are seen by their doctor every few weeks, and they decrease every three months in the second year and after five years every year. But where can you go for help after the doctors start to withdraw and you are in remission?
ONLINE FORUMS: Cancer Research UK organizes an online forum called Cancer Chat, where young adults with cancer can chat with others to share their experiences.
MEET-UPS: CLIC Sargent also organizes meet-ups every two months for survivors from 16 to 25 years old. clicsargent.org.uk
FACEBOOK: CLIC Sargent, a children’s cancer organization, has a Facebook group, Team Young Lives, available to anyone over 16 years of age with the cancer diagnosis on or before their 25th birthday. Members can ask other patients questions and share tips on how to deal with “late effects.”
GUIDELINES: Major charities for cancer, including Macmillan and Teenage Cancer Trust, have help lines around the clock with trained specialists who provide support and advice for children and families. Some even offer guidance.
Guides: The Children’s’ Cancer and Leukemia Group has produced a booklet for survivors of childhood cancer with advice on fertility, education, jobs, life insurance and mortgages.
WEEKEND RETREATS: The Teenage Cancer Trust organizes weekend trips for 13 to 24 year olds who have had cancer. During three hectic days they can enjoy inspiring conversations, workshops, therapies and social activities, and they get the chance to make friends for life.
When I was five years old and receiving chemotherapy, I lost all my hair. I remember going to the girls’ toilet and a classmate who said I had the wrong one. I didn’t understand – I was wearing a dress, of course I was a girl. Traumatized, I ran back into the classroom with the feeling that something was wrong with me. I didn’t fit in. I would return to school after a few months, and everyone had his friends. There was no more room for me. Often I was so tears and in a panic that my mother would have to pick me up halfway through the day. I am often woozy during the day and have an overwhelming urge to sleep.
My teachers bought me a beanbag that was kept in the corner of the classroom. It was my personal sleeping corner that nobody else was allowed to touch. It still takes me time to get out of my shell and make friends. I first have to figure out what I am going to say in my head before I can talk 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 memory and concentration problems.
The low blood count caused by chemotherapy can make even the simplest tasks, such as unloading the laundry, impossible. It is a phenomenon that is also known as “chemo-brain”. Studies show that, especially in children aged five and younger, long-term cognitive problems often occur months or even years later. But bad memory is just the tip of the iceberg. These days my maths skills are the same as those of a five-year-old.
Although I had a teacher at the hospital to bridge my gaps in education, I still had a hard time catching up, especially in mathematics and natural sciences.
I achieved the D-marks for both courses at GCSE. Even to study literature and film studies at the university, I needed at least a C in mathematics and science. My doctor had to write a letter explaining that I was lagging behind in math because chemotherapy had influenced my cognitive function.
When I first left college, I applied for a graduate job in marketing that I really wanted.
But before the interview, I was asked to do a simple math test. I could not face it and stopped without even trying.
When I am shopping, if something is marked with 30 percent, I am staring at the label without any idea.
Friends, babies and an uncertain future
I rarely tell anyone who enters my life about my illness. I feel that it would be like looking for attention. But with friends it is different. There comes a time when I think I should probably mention it. But for some reason there never seems to be a correct time and months, even years pass without saying a word.
My current boyfriend and I started dating two years ago. He accidentally found out that my illness had been in our relationship for 18 months – he came to my house and saw children’s photos of me without her. He reacted exactly as I had imagined: kind, sensitive and understanding, if a little surprised that I kept it a secret.
Fortunately, as far as I know, my cancer treatment does not affect my fertility. But millions of people who have cancer as a child are not so lucky. Some studies estimate that up to a third of children with cancer will remain infertile as a result of their treatment.
I have no reason to believe that I am having trouble getting pregnant. But I know that when the time comes, I will think of cancer again. Then there is the concern that my genes are cursed; what if I also give my children cancer?
I have to remind myself of the research that shows that the likelihood of inheriting leukemia in children is extremely rare. Cancer has stolen my youth. Now I will do everything to keep my hands off my future.