Many cancer cells that treat children have a copper bell attached to the wall. The ringing indicates when the children have finished their treatment and can finally start their lives.
These gong signals mark a huge milestone for them and their families and provide inspiration for fellow patients. When I got cancer at the age of five, 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 easy as ringing a bell.
Because I, now 23 years old, still live with what I know, my cancer will be a lifelong legacy.
I may be free from it now, but I am still mentally and physically affected by the toll it took on my little body all those years ago.
Now, at the age of 23, 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, who is 26, when I was diagnosed with acute lymphoblastic leukemia (ALL).
This is a form 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 from 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 for the doctors to make me better. I will therefore never know whether the long-term effects of the disease and its treatment have even been explained to me.
I did not know that bones in my legs would not develop well because of the time I was bedridden and the chemotherapy. Nor was I 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 would be 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 unwelcome reminder of my childhood trauma and that my life will always be a little harder.
My parents still don't like to talk about it. The horror of their youngest child 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, lying in bed most of the time, my leg growth was hampered.
I suffer from stiff joints and muscle aches more than most people my age and I can't walk longer than 40 minutes without my knees becoming stiff. Chemotherapy also stopped distributing the healthy cells in my bones, meaning that they did not develop as quickly as they should have. I have to live with the knowledge that as a cancer patient I have a significantly increased risk of osteoporosis later in life. Then there is my miserable immune system; enormously affected by the antibiotics I received as a child to fight potentially fatal infections. Even 20 years later I get everything going. Cough, cold, diseases, you name it. I am now resistant to the most common antibiotics, so small doctors can do most of the time.
Chemotherapy also inhibited the development of my red blood cells. It slowed the release of cells into my bloodstream to prevent the spread of cancer. But the number of blood cells circulating around my body remains lower than average, so I have the risk of dangerous blood clots.
I have to undergo normal leg scans to check if my arteries are blocked. But the more I realized what influence my childhood cancer can have, 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 don't drink much alcohol. My body has the best chance of fighting any disease that might return one day.
My fear that it can come back any time …
The mental consequences of cancer are almost stronger than the physical. Imagine living the rest of your life with the uncertainty that it might return at any time.
Even if doctors cure someone's cancer & # 39 ;, it can still return a few years after treatment.
This means that cancer experts are often unwilling to cure the term & # 39; & # 39; or & # 39; cancer free & # 39; to use. Instead, they say that you & # 39; in remission & # 39; are. But remission can be partial, meaning that some cancer cells stay in your body, but either are too few to find, too few to cause symptoms, or not grow. I was told that I was in remission by doctors at the Queen & # 39; s Hospital in Romford, days before my ninth birthday. But nobody can say that I am completely cured of cancer.
Only a few weeks ago I noticed a new lump on my gums. That flood of fear engulfed me – the & # 39; oh no, I'm going to get it again? & # 39;
As a child, the chemotherapy sessions panicked me. It falls the most when I'm sick. An unusual freckle and I will hear the dreaded voice ask: & # 39; What if it's back? & # 39;
Pictured: Serena at the age of five, around the time she was diagnosed, with her mother Melanie
Children's bullies 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 cancer patients in childhood will develop a problem related to their treatment.
These may include learning difficulties, abnormal bone growth, heart problems, fertility issues and an increased risk of future cancers.
During the first year they are seen by their doctor every few weeks, in the second year and then after five years to every three months. But where can you seek help after the doctors start withdrawing 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.
Measuring UPS: CLIC Sargent also organizes meet-ups every two months for 16 to 25-year-old survivors. clicsargent.org.uk
FACEBOOK: The child cancer charity organization CLIC Sargent has a Facebook group, Team Young Lives, available to anyone over 16 who has cancer, on or before their 25th birthday. Members can ask other patients questions and share tips on how to deal with & # 39; late effects & # 39 ;.
GUIDELINES: Major charities for cancer, including Macmillan and Teenage Cancer Trust, have day and night help lines with trained specialists who provide support and advice for children and families. Some even give counseling.
Guides: The Children & # 39; s Cancer and Leukemia Group has made a booklet for cancer survivors in children with advice on fertility, education, jobs, life insurance and mortgages.
WEBSITE RETREATS: The Teenage Cancer Trust organizes weekend outings for 13 to 24 year olds who have had cancer. In three hectic days they can enjoy inspiring conversations, workshops, therapies and social activities, and get the chance to make friends for life.
When I was five, a month after chemotherapy, I already lost my hair. I remember going to the maid's toilet and a classmate said I was in 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 as if something was wrong with me. I didn't fit in. I returned to school halfway through the treatment, after a few months away, and everyone had his friends. There was no room left for me. Often I was so sad and panicked that my mother would have to pick me up in the middle of the day. During the day I would often be fuzzy and feel an overwhelming urge to sleep.
My teachers bought me a beanbag bag 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 time for me to come out of my shell and make friends. I have to figure out what I'm going to say in my head before I can talk to people.
Studies show that many cancer survivors have memory problems and learn 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, such as unloading the laundry, impossible. It is a phenomenon that is also known as & # 39; chemo brain & # 39 ;. Studies show that, especially for children five years and older, long-term cognitive problems often occur months or even years later. But a bad memory is just the tip of the iceberg. These days my mathematical skill is similar to that of a five year old.
Although I had a private teacher at the hospital to bridge my gaps in education, I still struggled to catch up, especially in math and science.
I scored D-numbers in 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 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 wanted so badly.
But before the interview, I was asked to do a basic math test. I couldn't face it and pulled out of the process without even trying.
When I'm shopping, when something 30 percent is marked, I stand at the label without staring a cent.
Friends, babies & an uncertain future
I rarely tell anyone who enters my life about my illness. I think 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, a correct time and months, even years, never seem to pass without saying a word.
My current boyfriend and I started dating two years ago. He accidentally discovered 18 months in our relationship – he came to my house and saw children's pictures of me without her. He reacted exactly as I had imagined: kind, sensitive and understanding, if a little surprised that I kept the secret.
Fortunately, as far as I know, my cancer treatment has not 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 become infertile as a result of their treatment.
I have no reason to believe that I will have problems getting pregnant. But I know that when the time comes, I will have cancer again. Then there is the concern that my genes are cursed; what if I also give my children cancer?
I must remind myself of the research that shows that the chance of inheriting leukemia in children is extremely rare. Cancer has stolen my childhood. Now I will do everything to keep my future from me.
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