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I cried yesterday. I cried while waiting for the dinner to be served on our table in our nice cosy neighbourhood mamak’s place. I wanted to place the order for dinner and the waiter gave me an empty puzzled look, waiting for my order. He did not respond to my words and I snapped. Not to the waiter though, but to my obedience sons. I asked them to place the order, instead. And they were so obedient following my instructions, placing their orders and asked me politely what was it that I wanted to have for dinner.
I snapped. And I shouldn’t.
I snapped because I could hear myself so loud and clear, yet the waiter did not. I snapped and I blame the boys for the problem with my hearing and words, and I knew I shouldn’t. It’s not their fault. They have always been my ears after when the side effect of the chemotherapy and radiotherapy decided to stay with me for the past five years.
The medical term is remission. Complete remission means that tests, physical exams and scans show that all the signs of the cancer one had are gone. I called it ‘another fancy name for another type of sickness after cancer treatment, and it’s no fun and the ending is always ambiguous and at times writing this, it seems endless’.
I’ve asked my oncology, when will ‘this’ last? He gave me a blank look and told me, “It depends! Some people were okay after seven to ten years, some took longer and some lucky one could fully recover after five years. It depends. But as long as the cancer is inactive, you’ll be okay.” Apparently, I somehow find out later in life that I got conned by the meaning of remission. Of course, I am thankful for the treatment went well and after eight cycles of chemo and thirty-three cycles of radiotherapy, I was cancer-free. Alhamdullillah. Up till today, I knew it deep inside myself, being diagnosed with Nasopharyngeal Cancer Stage III has always been more of a blessing to me rather than a curse.
Chemotherapy was bad. Pairing it with radiotherapy made it worst. The experiences were unbearable and it will always make me lost for words when the need to describe the pain arises. It’s indescribable. To some extent, I remember saying “no matter how much I hate a person for doing something evil and bad to others, I won’t pray for that person to go through that chemo-radiotherapy experienced that I’ve gone through. It’s unbearable and it’s unkind. It’s not fair to any humankind.”
And I thought chemo was horrible. Until I met the monster remission. Remission is supposed to be a ‘good’ word. It brings hope and energy… mentally. Going through it was another story.
I’m currently on my fifth year in remission and as much as I wanted to believe that it would get better in times, it keeps on giving me false hopes. In the end, the best solution is to wait and see, never to lose hope and make the best of what’s left in life, every heartbeat seconds. After all, I am still here, typing this out word by word while some cancer patients are struggling to survive and some has even departed.
I got a nudge from The High Above. I am definitely thankful for the given chance. Imagine if I didn’t make it and leave the world before I was healed. Truth is, I knew what have I done in my past and I am definitely not prepared to meet The Creator with so many sins left uncleaned. Well, not that I am all saint now, but, the least I was given another chance to repent and to prepare for the eternal life, the day when we shall be asked how we spent our life on Earth, was it beneficial or was it just a waste? How could I not be thankful for the second chance given to me? And by being thankful, I shouldn’t complain. I should learn to be more patient and steadfast, and what’s important is to show to my three grown children that their mama is a survivor, for real.
I am not complaining.
It’s just that, once a while when the fluids from ears were overflowing and I couldn’t bear the sticky fluid coming out from my ears, I cried.
Sometimes, when the constant buzzing in my ears decided to amplify itself and made both of my ears blocked badly and I could literally hear myself breathing, I cried.
When I ‘thought‘ I was screaming calling my kids’ names and they were just doing whatever, ignoring me because I didn’t call them loud enough as a ‘normal‘ person does, I cried.
Sometimes, when I was just so tired for not doing anything and all I had to do to recover was sleep hours and hours and hours on the bed and I could even have the guts to get some food into my stomach, I cried.
When I could hardly feel anything on both my feet and my hands and my nerves were numb and to some extent, I had some blood flowing on my fingers from the knife’s cut and I didn’t feel it at the time of the incident, I cried.
I still remember the first year of my remission and when everyone was so happy to see that I’ve recovered from the cancer and giving remarks how ‘healthy’ I was, I just wanted to cry. I was all round and gained weighed at that time not because the miracle chemo. It was called a ‘mooning’ effect, the water retention in my body to the chemo drugs that were still in my body even after the treatment has completed.
The radiotherapy that I’ve completed around my head and neck area burnt all my skin, my tongue, my saliva gland, my hearing, my balance and all. I have no saliva, literally. I got choked up with air (yes, weird!) in the middle of the night due to dryness in my mouth and need to wake up for a sip or water, every night. I couldn’t taste anything, and frankly, if my husband put papers in hot boiling water or cooked me a delicious medium well sirloin steak and served both to me, it would taste the same, tasteless. Give me a dash of pepper to be served with the scrambled egg and I would jump as high as possible as that little portion of pepper in my food would definitely felt like I was eating a sharp glass that hurt my tongue severely. The pain was real. I considered myself lucky as I recovered within two years while I’m so much aware other patients with the same prognosis as mine are still struggling even after a decade.
When most of the girls at my age is struggling to lose weight, I wished I could gain from them. I lost 20kg during the chemo. And today, after five years, the weight has increased about 5kg. Someone who never knew me, and saw me in a buffet dinner, took as little possible food in my plate might hate me. They might be thinking I was insulting all the ladies out there. Fact is, the radiotherapy kills my saliva gland. For not having saliva, I need water every time I wanted to chew and swallow my food. After eight to ten swallows, I am all full and could not eat more. I remember an incidence where I tried not to drink water while eating in a public event. I nearly choked myself as I could not swallow my food. My husband was my saviour then. To others, it may seem funny as I was no longer a baby but I choked on my food. To those who knew me then, much aware that it was a life threat.
Last week, my ears started to bleed. I texted my oncology, and the same advice that I got from him is to go to the hospital and do the routine MRI and ultrasound check-up. Truth is, I’m getting tired. Once a while, I wonder, how long will these last? Once a while, I wish things would just go back to normal. But I guess, I’m in the phase of I’m settling for my new normal.
I’m not sure if my sharing on my personal experience going through the cancer remission is something worth reading. But I know, every life is worth living. You might wonder why someone never smiles back at you when you smile and greet her, maybe because she is struggling with buzzing ears and didn’t hear you great her. You might see that skinny bone petite lady took not even a quarter of yummy lamb briyani, not because she was on diet but because she just got tired. You might see someone trying to avoid volunteering and offering help at your daughter’s school even she’s a housewife and got all the time in her life to help. not because she was lazy but she just ‘disabled’.
To all of the people who happen to bump into a cancer survivor, do note they are not a survivor but still surviving.
To all of the family of cancer survivors, do know that despite the mood swings, ‘playing victim’ and emotional turmoils and tantrums that the cancer survivor might have present it to you, please forgive them and please knew they really couldn’t live all alone by themselves and appreciate every patience you give them.
To all the cancer survivors, we were never a real survivor after we’ve completed the treatment and the cancer cells were inactive. We are surviving until it lasts. For the time being, we just have to adapt to our new normal. Enjoy life and cherish it, every single moment. Be thankful for all the struggles because without them we wouldn’t have stumbled across our strength. When living your life is the only option, just live to the fullest.
 Nasopharyngeal cancer is a rare type of head and neck cancer. It starts in the upper part of your throat, behind the nose. This area is called the nasopharynx. The nasopharynx is precariously placed at the base of your skull, above the roof of your mouth. Your nostrils open into the nasopharynx.
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