February, 11 2016
My Post-Chemo Struggle: What They Didn't Tell You

She had looked forward to the end of her chemotherapy regiment, but found out that it was an even harder struggle that made her question if it was worth the effort fighting cancer.

by Matilda Narulita
Lifestyle // Health and Beauty
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Had I known how my life would be after my chemo treatments ended, I might have thought twice about fighting.

Yes, I know fighting cancer is a decision. Forget about the result, determining whether we want to go through the painful chemo journey is for all us to decide. However, living a post-chemo life is, apparently, out of our control. Let me elaborate.

I was all prepared for chemo. I knew plenty of lymphoma survivors who shared their chemo experience, possible side effect and ways to overcome it. I gathered abundant information on chemo regiments and methods. I met doctors who have long experience in treating lymphoma patients. Though scary, my chemo treatment journey, along with its side effects, was all as expected.

Just a few days before I departed to Singapore for my first chemo session to cure my stage 3B Hodgkin’s Lymphoma, I heard that my colleague passed away, three months after her breast cancer diagnosis. Rumour had it that she refused to undergo chemo and radiotherapy, even though her bosses offered to pay all treatment expenses in Singapore so she could get the best possible treatment. The only reason was she wanted to be near her baby and husband as long as possible. With that decision, she chose to give up her life.

The news left me in question. Having known the risks of untreated cancer, she consciously, though indirectly, decided to end her life, while with proper treatment she could’ve recovered and stayed close with her loved ones in the long run. I couldn’t comprehend it, but I let that thought vanished as I proceeded to the operating theatre, exactly a year ago.



It was only after my first chemo that I felt the strongest fear I had ever experienced in my life: the fear of pain, of loneliness, and of failure. And what made it worse was the fact that it subsequently happened. My fear became real. At some point, I recalled the story of my late colleague and somehow gained better understanding of what she felt. However, I chose to keep fighting, knowing that in the next six months I would finish all treatments and be declared clear from cancer. Hang on, it will be over soon, I kept telling myself every time when I found myself in my lowest.

When the day of my final chemo finally arrived, I felt ecstatic, knowing that it was going to be the last time I would be exposed to the vein-burning regiment. My chemo journey ended on a high note when the next day I found out that I won a government scholarship that opened the door for me to pursue my graduate study. My doctor was very satisfied with my chemo progress and declared me clear from cancer. She prescribed additional medicines and attached a medical certificate that required me to take extra three-month sick leave for recovery. While the recovery time differs from one survivor to another, my doctor was optimistic that I could recover very soon, given my great progress, and so was I.

I spent the three-month break mostly to prepare for my school application. I attended an intensive preparation class almost every day, both so that I could get a great exam score that would give me more chance of being admitted to the school I wanted, and to get myself used to the long work rhythm.

Life went on pretty well until I returned to my full-time job. To my surprise, I found it extremely hard to do simple tasks. I got tired easily, my work was mediocre, and I could clearly see the disappointment on my boss’ face. While he was very kind to allow me to work at my own pace, I couldn’t help but feel really bad for my performance.

For the next few weeks I struggled a lot, even just to wake up from bed every morning. Let alone working on financial model for my client. My best performance was everybody’s mediocre performance. I had constant severe whole-body pain along with extreme fear and anxiety that got worse and worse over time. So I decided to take a two-month leave. Even my doctor was worried, knowing that this wasn’t common.

I quickly realized one thing: nobody really told me that living a post-chemo life would be another battle. I was unprepared for living far-from-normal life after chemo. I didn’t expect I would struggle both physically and mentally even worse after chemo.

Even today, six months after I finished my chemo treatment, I still struggle a lot, physically and mentally. I tried to ease the pain by sharing it with some close friends just to get a laugh. Yes, a laugh, along with that “Jangan lebay” response that told me to stop exaggerating the pain I felt. Because they thought I should be okay.

Well, I am good at hiding my feeling. So even though I look happy, I might be broken into pieces inside. Some even publicly shared my secret stories, something that I didn’t disclose to other people. Ultimately it made me decide to pull away from people I know. I lost trust in some of them.

I spent my time crying almost every day last year, my body shaking under a blanket as I wished the fear and anxiety would stop haunting me.

I have lost count on how many times I had bad thoughts and was so close to end my life. Every day I have to fight those negative thoughts that drain my energy and cause severe headache. I have to befriend my current condition, which is not even half of my normal state.

Had I known I would feel this way, would I still think of fighting my cancer? Or would I decide to give up and spend the last days of my life with my family?

Well, I don’t know. At some level, I am glad that I don’t know. Because apparently, not knowing the result of your battle enables you to put your best efforts to fight for it, because, eventually, at the end of the journey, the outcome is no longer that important for me. When I reach my finish line, I want to look back and smile, knowing that I have lived my life to the fullest. And do you know why we should keep going forward?

Because I know there is hope. There is always hope.

Matilda Narulita finds hopes through nanoblock, as she thinks that life, however scattered it is, can be rebuilt piece by piece, just like nanoblock!