Many a times friends who are concern about me, give me advice, encouragement, or even scolding to make sure I do not sink into depression with this cancer episode going on. But, most of the time, it isn't really what we need.
Sometimes, I even got quite tired of all these and I figure out pretending to be fine is the best solution. But again, when my acting goes too well, people start to think I'm perfectly fine and okay to go on with life, which in actual fact I’m not. And then, it hurts me when my closest friends also think this way.
This is when I start running away.
I finally met Shu (a fellow Hodgkin's Lymphoma young patient I knew on a US support forum. He's a Singaporean though, residing in London till last year. This makes me wonder why we Singaporeans had to seek support from a US forum and not a local one. Simply, there isn't any form of emotional support or support of any kind in Singapore for us. It's such a shame. ), after 6 months of virtual emails exchange, we had a long and hearty chat at Starbucks.
His other friend Daniel, who had testicular cancer once said, when we’re feeling all down and sad, what we really needed was just some form of validation of our emotions. It struck me so hard; my heart was a little sour at that point.
Many people simply think that once treatment is over, things will go back to normal for me. Telling me even if it's not immediately, it will eventually.
But, do they really understand what we will face in the future?
And it hurts me even more when it's my closest friends who tell me that.
Honestly, it sounds more like a dismissal to me rather than trying to say "think of the bright side."
My Brazilian fellow Hodgkin's friend, Marina, recently posted this column written by a girl who had leukaemia. Her words touched me and it was so true.
*****
Life, Interrupted: Facing Cancer in Your 20s
By SULEIKA JAOUAD
I was so excited for what lay ahead, I nearly forgot to wave goodbye to my parents. Armed with a college diploma, my first job offer, a one-way ticket to Paris and a new pair of heels, I was ready to take on anything. Little did I know, I would be back in New York seven short months later. But my parents would not be taking pictures at the airport or chatting about my future plans. I would be in a wheelchair, too weak to walk.
In Paris, the doctors had struggled to make sense of my symptoms — anemia, fatigue and persistent infections. They ran test after test — I was even hospitalized for a week — but the results were inconclusive. I was just 22, but the doctors released me with a diagnosis of “burnout syndrome” and orders to rest for a month.
Rest didn’t help. Desperate for an answer, I Googled my symptoms. It seemed I could have anything from the mumps to diabetes to something called cat-scratch fever. The word “cancer” also caught my eye. The first doctors I saw in the United States thought I was depressed and suggested antidepressants. I said no and insisted they keep looking.
A week later, my worst fears were confirmed. “Leukemia,” the doctor said, dropping the word like a bomb. Soon enough I would learn the specific diagnosis: myelodysplastic syndrome, a disorder of the bone marrow. In my case, the disease growing inside me had morphed into acute myeloid leukemia. I would need intensive chemotherapy and a bone marrow transplant to save my life.
The long-awaited answer reverberated in my head, and I found myself slowly pronouncing the syllables: loo-KEEM-ee-ah.
Where cancer is concerned, it’s safe to say there’s no such thing as good timing. But having a life-threatening disease in your 20s carries a special set of psychological and social challenges. It defies our very definition of what ought to be. Youth and health are supposed to be synonymous. If only I could sue my body for breach of contract with the natural order of things.
Cancer magnifies the in-betweenness of young adulthood: You’re not a child anymore, yet you’re not fully ready to live in the adult world, either. After my diagnosis, I moved back into my childhood bedroom. And as I get sicker, I increasingly rely on my parents to take care of me. But at the same time, I’ve had no choice but to grow up fast. Daunting questions that most of my peers won’t have to consider for many more years have become my urgent, everyday concerns: How will I hold onto health insurance if I’m unable to work? Will I be able to have children? How long will I live?
Even inside the hospital’s oncology ward, being a young adult with cancer can make a person feel like a misfit. I’m usually the youngest patient on the floor. In fact, I’m the youngest person my doctor has ever treated with this disease. (A vast majority of patients with my form of leukemia are over 60).
Young adults might just be oncology’s “tweens” — too old for the pediatric cancer floor but equally out of place in an adult oncology unit. I’m not suggesting that it’s worse to be young and sick, but rather that young adults with cancer are a less visible demographic, swept up in the mix of adult cancer statistics.
A 2006 report from the United States Department of Health and Human Services presents a shocking reality: Despite great strides in treatment for most cancer patients, adolescents and young adults ages 15 to 39 have seen little or no improvement in cancer survival rates for decades. The report describes how survival rates have “been hampered because cancer risk and adverse cancer outcomes have been under-recognized in this population.” It points to the fact that health care providers are often not on the lookout for cancer in this age group and, as in my case, misdiagnose symptoms — or miss them altogether.
Nine months, eight hospitalizations and seven chemotherapy treatments later, I’m realizing that age is an inextricable component of how we experience cancer.
Cancer has forced me to pause my life at a time when my peers are just beginning theirs. For my friends, most of them young adults in their 20s, this is an exciting time as they look forward to starting new jobs, traveling the world, going to parties, dating and finding love, and all the rest of the small and big milestones that are part of early adulthood.
Like my peers, I have yet to fully define who I want to become. But as a young cancer patient, it’s difficult to see ahead when I’m fighting for my life. I don’t know what the future holds. I just know I want to be there.
