From the Writer to the Reader
First of all, allow me to thank Madam Editor, Dr Nor Azlin, for “sms-ing” me her shortest message to have some write-up of my life experience. She must have a very good reason for asking or I must say that I have quite a story to tell. Being a life-time neighbour-turn-sister to Dr Nor Azlin, I saw my fingers blankly type OK before I even had time registering it let alone thinking about it. The next sms I received from her was a gentle reminder of the deadline which is like 7 days apart (inclusive my weekend retreat at Langkawi). Again, my replied was OK despite the fact that I was over occupied with my latest research in Langkawi. You see, I was in Langkawi on an invitation to check up a place located at an area believed to be a crater caused by a meteor from outer space that came crashing on the land some million years ago during dinasour age. Well…at least for now, you can pull my intriguing side-story away unless you are able to take some days off for a holiday trip there.
A Life Journal in the Making…
No, no I’m not into astronomy neither a fossil digger nor holding Mahsuri bloodline. I was just trying to be catchy that’s all. But in case you’re going there, make sure you tour the place called Mahsuri Ring, you’re sure to hear more about the legend. Before you move on, let me tell you what you are about to read is my own story being left unwritten. All I managed to do was either keeping some notes in the pages of my diary or as you might have intelligently guessed, are just left hanging in my thoughts. So, here is from me to you – a written report of my thoughts and life – Living Through Cancer During Pregnancy.
It was 8 years ago. I was 33 years old and had such a good life with family and friends. Leading a prosperous life, I always had been active and so full of fun and enjoyed every minute watching my children grow. The first is my daughter, Nur Ilham Kamilah and the second is my son, Ikmal Hakim. I had a great family, great job and was building assets. Somehow I wonder, if this wonderful feeling will last forever…
Having had two beautiful children, I thought it was just the right time to add more to my family. My prayers answered – I conceived my third child during the first few months in 2001. My two children grew, my pregnancy grew and …the tumour in my right breast grew. Little that I knew, there was a gradual change in my right breast. I started to recognise the change when the areola surrounding the nipple looked more wrinkle than the other. Then, the whole nipple was contracted inside. Surrounding flesh felt lumpy – one side hardened while rest remained soft. I tried dabbing it with soft towel soaked in warm water, hoping that the nipple will soften and back to normal but after a few trials, it looked as if it had its own mind and stubbornly stayed contracted. The whole right breast felt tight. Both my husband and I decided to find out what was happening and decided to confide in my gynaecologist who at the same time monitored my pregnancy. She called in a surgeon who immediately did a biopsy and asked me to wait for the result in 3 days. I had a mixed feeling – I knew that there is vigorous hormonal change during pregnancy and it may cause some changes or irregularities in the breast. Another voice from within sort of advised me to be ready for the worse result that could appear out of the biopsy test. Instinct told me to be strong and prepared and a lot of what-if came about. I even wondered why there seemed to be many talk shows on TV talking about breast cancer besides continuous reports on Sept 11 tragedy in New York (my biopsy done in the same week as the Sept 11 tragedy). Finally, I was in the doctor’s room ready to hear the result of the test. My instinct took hold and I knew right there and then, even before the doctor had to say anything.
I remembered my first question to the doctor was what I should do next. The next thing I knew, both my husband and I had to learn new vocabulary very, very hard and fast – surgery, abortion, chemotherapy, radiotherapy, adriamycin, taxol whatsoever – all this came into pictures and became our daily talks. Information was critical as I was held responsible (by myself) to make ‘wise’ decisions prior to any treatments. Both of us became glued to the internet whenever we had time to find out more and more of what’s-this-and-that. I had to deal with many specialist doctors coming from various departments i.e. surgery, oncology and gynaecology in the hospital (HUKM then, now PPUKM). My search for information did not end at one hospital, but a few others just to satisfy my gut feeling.
Cancer Treatment – do I have a choice?
It was quite an easy decision for me to follow the doctor’s strong advice for mastectomy. I knew I could not wait…and why wait when I knew the result of waiting will require my life! I was quick to understand that when there is a bad agent in the body, the best treatment is taking it out from the body. What a learned patient I was, I could almost hear sigh of relief coming from the doctors’ room; at least they could save their precious consultation hours for other critical reasons. Then, there was the pathology report of the surgery – the tumour was bigger than enough to request me for another big decision as to go for chemotherapy which had to be done within 60 days from surgery date; that means chemo had to be done while I was still in pregnancy. Well…this is it. My information seeking continued only more vigorously. I found it’s quite common and most of the time treatable in the U.S. I couldn’t find anybody with the same case here that I could turn to for peer support.
I went to my list of gynaecologists to just find out whether he/she has any resolutions for my foetus in case there is chemo complication and even asked them how is abortion like and the pain and the like. To my relief, all of them gave such good encouragement that both of us (mother and foetus) will be all right. However, all the doctors agreed that chemo could not put its toll too much on the foetus, thus I need to deliver the baby at the 8th month when the foetus size and being is good. I had the longest scan of the tummy to ensure this. To describe how I feel as the day of chemo getting nearer may require me to write a book!
Chemo had its two cycles while I was pregnant and it had been doing its job well without hassling me and my foetus. I had very minor nausea and my taste buds and energy level was quite normal – I had no complains. I was in high spirit all the way. Then I took a break from the chemo cycle just enough to allow me to deliver my baby. It was midnight and my husband was beside me all the way. The baby was small weighing 2.27kg which the doctor believed incubator may not be necessary. Early the next morning I found that my baby had to be pushed into NICU for breathing assistance. Fondly remembering his assuring twists and turns in my tummy, I could feel his level of energy and motherhood instinct assured me that the breathing assistance would only be temporary while he was adjusting to the real world – anyway, he was forced to come out remember?
The chemo continued one after another. Then, there were 20 times of radiotherapy. My husband told me that if there were hundred people looked like me, he would have no problems identifying me. Why? Because the radiotherapy mapping drew the biggest square-shaped tattoo on my chest skin! Anyway, it has gone out now.
How I Feel Having To Go Through All That
My pregnancy was five months old when I had mastectomy. Bearing my child while dealing with cancer gave me the inner strength I never knew I had. It gave me such unimaginable will power to push myself through the sickness. Suddenly losing a breast seemed small compared to my agony to live a healthy life not only for myself but for the baby I was conceiving. Apart from dealing with physical trauma, an equally tough challenge for me was dealing with negative thoughts and emotion. I learned not to feed my sadness, fear or any negative feeling as I felt these emotions were not only unpleasant but a complete waste of time and energy. You could feel sorry or extremely fearful but it would not cure you. Normally it just makes you feel more distorted. I come to realize that a sick mind cannot help a sick body. Of all the things I have done in my life, the ability to think in a healthy way is the most powerful which have helped me go through the challenges and gave such great courage.
I feel that having to go through two major challenges in life at the same time, is truly my calling. Looking back, I have no regrets having cancer and accept it willingly (if I’m allowed to choose) despite being a life-threatening disease. The experience of delivering a life when my own life was at risk had really awakened me with the essence of livelihood and the greatness of our Creator. Perhaps the journey of living through cancer has prescribed me with the need to do more soul-searching. What a wonderful reason to be alive! I hope that the writing of my life journal will inspire and brave the hearts of those affected by cancer in one way or another. Talking from my experience, information and knowledge is the mother of all cures. Knowledge would guide you to understand the sickness and the treatment positively. In endeavouring that, I would recommend joining a support group organized by any cancer-care societies like KanWork (Persatuan Kanser Network) and help out with organizing the activities. Not only it helps to enrich your knowledge but the social interaction and companionship with others is unbelievably stimulating and spiritually uplifting. Last but not least, I would love to take this opportunity to thank all my doctors who have poured such great devotion and have gone beyond requirement of their profession to touch my life. God Bless…
By: Nor Aida Kamaruddin