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Playing in the Rain

Voices of Childhood Cancer Survivors

Copyright © Children’s Cancer Foundation, 2012 ISBN 978-981-07-1291-4 All rights reserved. No part of this publication may be reproduced, stored in retrieval system, or transmitted in any form or by any means, electronic, mechanical, including photocopying, recording or any information storage and retrieval systems, without prior written permission from Children’s Cancer Foundation. Design and layout by Pagesetters Services Pte Ltd Printed and bound in Singapore

Hopping over my troubles Page 12

Running my greatest marathon Page 22

Rachel
The roller coaster ride called cancer Page 36

Sheam
Living life to the fullest! Page 46

I defeated the monster! Page 54

Leonard
My god brother stood up for me Page 30

Danish

Eugene Deborah
Getting out of the gutter Page 60

It’s all up to me Page 68

Coming back for good to make it better

Jonathan Atikah
Of thorns and roses Page 88 My home, my heaven Page 96

Arujuddin

Tracy Sulaiman

Xin Yi
When the going gets tough, the jokes kept me going Page 110

Firdaus
The jewel of the family version 2.0 Page 118

Jun Da
A philosopher at ten Page 74

Page 80

Renuka Ya Ting
Overcoming one day at a time Page 132

Salman
Cancer cannot stop me Page 138

Peng Hock
More than a cushion of comfort Page 104 My wake-up call Page 126

Ying Wen
Emerging from the darkness of the cocoon Page 144

Yoke Kuan
A future beyond cancer Page 150

Foreword
Cancer may only be a six-letter word, but it has far-reaching implications for those whose lives are affected by this illness. Repeated hospital visits, countless injections, financial strain, disrupted schedules, mental anguish and emotional pain are only some of the difficulties experienced by individuals and families impacted by childhood cancer. This book captures the voices of 20 individuals who have fought courageous battles against cancer. Amidst their battling, some experienced loss of dreams, body image, friends, time and mobility, things that many of us take for granted. Yet, these individuals have chosen to confront adversity with playfulness and find creative ways to stay afloat, refusing to allow the pressures of the illness to defeat them. In the process, they gained new connections with people, a new outlook on life, discovery of their inner strength, a profound appreciation of life, a deeper realisation of the love shown by family and friends, a renewed desire to contribute back and help others and a hope for a brighter tomorrow. The stories of resilience featured in this book demonstrate that courage comes by not giving up or giving in to the storms wrought by cancer. With the courage to play in the rain and savour life despite their illnesses, these childhood cancer survivors are remarkable testaments to the power of resilience and hope. I am sure that you will be inspired by their life stories, just as I am inspired by their “never give up” attitude, strength and fortitude in the face of adversity. 2012 marks the 20th anniversary of Children’s Cancer Foundation (CCF). Twenty years of inspiring life’s journey would not have been possible without the support of many individuals, corporates, volunteers and the community at large who have come alongside CCF to help ease the pain, lighten the burden and bring hope to children with cancer and their families. Be inspired and may your giving be an inspiration to those around you. Together, let’s build a more caring Singapore.

Associate Professor Ho Peng Kee Patron Children’s Cancer Foundation

Preface
When cancer strikes, it can be sudden and unpredictable. This life-threatening illness often shatters the dreams and normalcy of childhood and floods the young minds with many questions. “Why me?”, “Will I die?”, “Is the treatment painful?”, “When can I go back to school?”, “What are the side-effects of the treatment?”, “When can I be normal again?” and “Will things ever return to normal?” Unfortunately, there are no model answers to these commonly asked questions. The children have to constantly make meaning of their various experiences with the help of those around them. Some childhood cancer patients even have to face unwanted reactions and responses from others. Stares from others due to their changed appearance, as well as teasing from classmates and a general feeling of displacement as a result of various changes in their personal and social lives are not uncommon. Even after one recovers from cancer, there is also the uncertainty of relapse and having to cope with long-term side-effects from the treatment. The reality of having to face such difficulties at a young age rains down hard on children and youths with cancer. But, it is remarkable that many of them are able to weather such difficult storms with great resilience. These are the childhood cancer survivors who do not permit the arduous cancer journey to defeat them. Instead, they possess incredible strength that allows them to surmount their obstacles. For some, the cancer experiences awakened them to strengths and capacities that they never knew they possessed. Others went on to adopt a changed outlook and a deeper appreciation of their families and the simple things in life. Along the way, some survivors explored new possibilities for their career path and purpose in life. The idea for this book came about because too much literature on childhood cancer survivors focus on the dark side of the illness or the trauma and negative side-effects experienced by survivors. This book emphasises the resilience of individuals and their abilities in overcoming the odds in their cancer journey. Childhood cancer is an intriguing topic, given its far-reaching effects on individuals and their families. Even with medical advances, experts still do not have a conclusive answer as to why children have cancer. Despite many unanswered questions, these children and youths do not remain stuck in the questions but are able to move beyond them. The pages of this book contain the accumulated wisdom of childhood cancer survivors about tips on how they manage to survive and even thrive in their circumstances. By adopting

creative ways of managing their illness, cancer becomes merely a word and not a sentence for these childhood cancer survivors. Although childhood cancer has the propensity to wreak havoc in their lives, the survivors featured in this book have chosen to play in the rain rather than wallow in it. What does it mean to play in the rain? It means to be positive in a seemingly dark situation. It means to be able to enjoy the simple pleasures, even in the midst of something painful, such as the ability of some survivors to distract themselves from the pain of treatment by enjoying activities such as playing games. It means being able to accept or embrace changes that have taken place, so that one can move on with living. It also means enduring the hardship by transforming personal pain into opportunities for revelation and growth. It means allowing oneself to soak in the simple pleasures of love, care and concern shown by loved ones. The innocence of childhood is portrayed in the playful moments of smiles and laughter even though life rains down painful and difficult times. These playful moments are found where living and life become the focus, rather than the pain of illness. Surely, it gladdens the heart to behold the rainbow of hope after the rain. The honest accounts of the cancer journey might be painful to read, but the stories also reveal how the pain could be eased by the support of caring adults, loved ones and friends. For instance, one of the youths, Atikah, wrote about how she was misunderstood by a member of public for allowing her grandmother to push her wheelchair, when she had restricted mobility due to side-effects from her cancer treatments. It was with the support of her mother that saved her from further embarrassment, and the encouragement of loved ones that enabled her to work towards her goal of regaining her mobility and independence. These stories also affirm the ability of individuals to surpass their endurance limits and grow from their cancer experiences. The depth of self-reflection in these recollections demonstrates the ability of survivors to gain a mature appreciation of life and the people around them, and an awareness of their strengths. In another frank reflection, Peng Hock spoke about how his view of what he valued in life has changed as a result of his cancer experience. A self-confessed former problem student, his life was transformed for the better after he had cancer. He stopped his gang activities and restored his relationship with his mother. It is my hope that through reading these stories, you too will be inspired by these individuals to look beyond life’s challenges to map out a lighter path through the darkness, and dare to play amidst storms in your lives. Who knows, you might hear a thunderous applause, a salute to your courage and resilience, just like what all the childhood cancer survivors deserve. Indeed, all the stories in this collection serve to demonstrate the indomitable power of the human spirit, rising from the ashes of adversity, to learn, to change, to hope, to contribute and to play.

Dr Tay Miah Hiang Chairperson Children’s Cancer Foundation

Acknowledgements
Special thanks to the following people whose efforts, contributions and support have made this book possible: Deborah Luciana Choo, Eugene Lim Dahua, Xie Wenming Leonard, Rachel Chin Qiao Lin, Sheam Kannan, Muhammad Danish Bin Muhd Rashid, Tracy Ng Si Min, Muhammad Arujuddin Bin Hussain, Wong Jun Da, Renuka d/o S. Elanggovan, Nur’ Atikah Bte Md Yusof, Jonathan Chan Jia Quan, Mohamed Sulaiman Bin Mohamed, Tan Xin Yi, Firdaus Bin Mohd Abdullah, Yap Peng Hock, Low Ya Ting, Salman Bin Zulkarnain, Chia Ying Wen, Tham Yoke Kuan Joyce, For their invaluable contributions of their personal childhood cancer survival stories; The parents and caregivers of the survivors mentioned above, For graciously allowing their children and youths to be featured in this book; Associate Professor Ho Peng Kee, CCF Patron, and Dr Tay Miah Hiang, CCF Chairperson, For penning the Foreword and Preface respectively; The book reviewers, Muhammad Hafiyyan Bin Basuri, Sng Huiting, Ang Wei Ya, Natalie Wong, Dr Brad Zebrack, Edward W. Goh, Juliana Toh, Bharathi Ganesh and Tan Kian Boon, For their sharing and thoughts; Chua Mui Hoong, For conducting a two-session writing workshop for the survivors; Nuria Ling and Jean Qingwen Loo, For capturing the survivors’ lives through their beautiful photography; Dawn Koh, For her beautiful caricatures; Children’s Cancer Foundation Fong Hoe Fang, and his team, including Chng Suan Tze, For designing the book and editing the stories; Lee Wei Song School of Music, Tsao Foundation for Successful Aging, Bollywood Veggies Singapore, Travel Organic Farm, Climb Asia and Singapore Philatelic Museum, For sponsoring their venues for the various photoshoots; Chee Wai Yee, For coining the title and for planting the seed for this book project; Neo Lay Tin, For providing guidance in this book project; Joan Khng, For conceptualising and managing this book project, and working with the survivors towards seeing their stories in print; We also thank those not mentioned above who have directly or indirectly contributed to the production of this book.

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Deborah

Debor D eb o ra h Deborah b

ars old 11 ye udent st chool s rimary P Acute aemia of rvivor stic Leuk Su la d mphob Ly ears ol y d at 5 e iagnos D

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pping over my t Ho roub les
Are you a girl or a boy?” my kindergarten classmate asked me. I was nervous; I felt very ugly; all my hair had dropped off and I had not been in school for some time. I kept quiet. “Are you a boy or a girl?”, another classmate asked me. “It’s my cancer,” I tried to explain. But they did not understand. I was bald, so I looked like a boy, but I was wearing a girl’s uniform. So again and again came the same question which made me really upset. So I walked away. I did not want to talk to them anymore. I was five when I was diagnosed with Leukaemia. I did not know what Leukaemia or cancer meant. I only knew that it hurt. It was like people stabbing me with knives. I cried because I did not know why I had cancer. The hospital experience and treatment are things I do not want to remember. My mummy told me that I was in the Intensive Care Unit (ICU). I was very limp (semi-conscious, my mother said) and my breathing was very shallow. The doctors had to give me oxygen and blood transfusion. I had many tubes in me and I was all alone in the room.

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At the ICU, my mummy said, “If Jesus is calling you, go.” Weakly, I said, “OK.” That put my mummy in a state of panic. She said, “You mean He is calling you NOW?” Then she left the room. Years later I learnt that she wailed her heart out when she heard me say “OK”. There was also this bone marrow thingy where they had to put me to sleep first. I hated the feeling it gave me. It was like air going inside me, like a stone pressing against me. Then when I woke up, my mouth was very dry and I felt like throwing up again and again. I do remember some good things that happened during treatment; I liked to sit on mummy’s lap. Just her company was enough to make me feel happier. She gave me a lot of stickers to encourage me. I felt good when mummy said “I love you”. At the end of the treatment, she gave me a lollipop. I was usually not allowed to eat sweet things because they are not good for people with cancer. I kept it and sucked it and then put it back in the wrapper. This was how much I treasured the lollipop. I also enjoyed playing games with the people from Children’s Cancer Foundation (CCF). They told me jokes and made me laugh. Because of the cancer treatment, nearly all my hair was gone. When I was in public, almost everyone would stare at me. I felt embarrassed. I avoided their gaze and walked away quickly so

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that they could not ask me questions. When I was in the hospital, I did not feel out of place with no hair; this was because I played with the other kids who also had no hair. But not in school! When I started primary school, I faced many problems. The children, instead of talking to me, avoided me and I felt very left out. Although my hair was already growing back, my schoolmates would say things like “Boo, you got cancer…”. Having cancer was like having very bad luck. Up till now I am still affected by what they said. I think my classmates felt that I was weird. How come I did not have to do Physical Education (PE)? (At that time I was carrying my Port-A-Cath on me and it would be very painful if it got dislodged). How come I pulled a trolley bag to school? Everybody’s school bag was mostly a backpack, but mine was a trolley bag. How come I was so special? I ate home-

cooked food but the rest ate canteen food. It felt odd to be singled out. Auntie Aaqilah, the CCF social worker, went to school to tell the children about me. It helped them to understand me better when she did that as all my classmates used to ask, “Why are you so special? How come you do not need to stand up when the whole class was punished?” My classmates also thought that I was slow and stupid. My mother said that it was the side-effects of treatment. It affected my memory, but when the treatment stopped, I would be better. I did not want to be stupid, that was why in the hospital, I wanted my mother to teach me some of the schoolwork but the nurses thought my mother was pressurising me. When I heard any bad comments, I tried not to cry or do anything. I just controlled myself and I walked

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away. But, I would pray to God. I know I should not say this, but still I said, “Please God, send all these stupid people away from me because I hate them. They are making me very stressed.” Actually, I prayed to God a lot. In the hospital I would pray to God and hope that soon I would be well again. It was very painful and when they were taking my blood from all over my body, I would say, “God, help me” and in the end it was not so painful. Now, whenever I have a problem, I will pray straight away. But, I also talk to my toy rabbit. It is like a real rabbit to me. I will talk to my rabbit and share my problems and it is good because after that I feel better. Things are better now. I have friends who care about me. They play with me during recess, hang out with me and talk to me. I share with them about

my cancer and they understand me. I am also braver than some of my classmates. I remember one big boy crying because he was afraid of an injection in school. I just told him, “Kor kor, don’t worry, it’s just like an ant bite”. My cancer treatment lasted two years. My mother told me, “If you listen and take your medicine, even though the taste is not good, sooner or later you can eat the things you like, for example, McDonald’s.” I felt encouraged when I heard that. Yes, now I eat anything I want. It is good to be normal. I am now a normal schoolgoing kid. I enjoy singing in the school choir. I love all animals except the monkey. My ambition is to be a vet. Surviving cancer is an achievement for me. I would like to tell other kids suffering from cancer that I have been through it and I know how it feels.

Sooner or later, when you get well you can leave the hospital, go home and play with your brothers and sisters, be with them and eat whatever you want. Just take your medicine so you can get well soon. To parents, I would like to tell them that it is good to manja (pamper) us and treat us lovingly because it helps to make the journey easier. To schoolmates and members of the public, I would like to say, “Please do not stare or laugh at people who look different. It hurts.” To all children going through cancer, please be brave. Pray to God. May you be blessed and may you recover soon.

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Eugene

d ears ol 27 y sistant as rative t dminis A Acute aemia of rvivor stic Leuk Su la old mphob Ly years d at 12 e iagnos D

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Marathon Greatest unning My R

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W

hen running a marathon, one needs endurance, as the end point seems far away. Pushing yourself when running can bring about mixed feelings - the tiredness from pressing on, but also the happiness that comes when you know you have accomplished something. My cancer journey seemed long, rather like a marathon. Family support is as important to me as to a runner who is motivated by people cheering him on. I endured much when I had cancer. I experienced a whole range of emotions, which is something that I wish no one would have to experience. Is it possible to be happy when you are in the Intensive Care Unit (ICU)? I was bleeding internally from a burst ulcer – the effect of chemotherapy treatment. Excessive bleeding meant death. I had to be immediately monitored. A scope had to be inserted to see the damage inside my body. I was all alone and I started talking to myself. Although I am a free-thinker, I started talking to God. I said things like, “I’m here, all alone, somebody please accompany me”. Then I started having flashbacks of happy memories which made me smile. At one point I was feeling better even though my body, including my neck and leg, was full of needles. I might even have died because I seemed to be up there. I could see my mother flooding the hospital with her tears. The bleeding did not kill me. I survived my ICU encounter. After this incident I became more positive and happier. In fact, I seemed to have gone a little crazy; I laughed a lot and I felt like singing and rocking to music.

I certainly was not feeling that way during the period leading up to my diagnosis of Acute Lymphoblastic Leukaemia (ALL). First, my mother spotted an enlarged lymph node on my neck that had swollen to the size of a 20-cent coin. After going through blood tests and x-rays, results seemed negative. My mother brought me to see a specialist at Tan Tock Seng Hospital, and we found out that there were 17 other inflamed lymph nodes inside my body. A bone marrow test revealed the worst. I was then only 12 and still not quite aware of what was really happening. However, I could see that my mother was visibly upset. It was not until the first day of the scheduled two-year treatment that I knew of my diagnosis. But, I was not

aware of the severity of the diagnosis and treatment. It was only when the doctors began inserting needles into my veins that I realised how tough the two years of chemotherapy was going to be. Fortunately for me, my parents were there to support me all the way. They tried to make me feel at home during my stay in the hospital, so they asked the nurses to allow me to wear home clothes. They brought a small television set so I could watch football matches. They brought home-cooked food which I suspected were not always approved by the hospital. They kept me company 24/7. Such efforts certainly helped take my mind off the drips and needles.

y rtainl ce forts ch ef f f the Su mind o y take m helped . e edles n s and drip

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It was indeed a tough journey. First, there were the sideeffects of nausea, vomiting and hair loss. Hair loss was not much of an issue for me. Shaolin monks and Shaolin kungfu dramas were in vogue at that time so I imagined that I was a Shaolin monk whenever I looked at myself in the mirror. Luckily, Shaolin kungfu dramas were very popular during that period! And then came the ulcers which landed me in the ICU. The ICU experience marked a turning point in my journey. I realised that life is short, so one has to live it to the fullest however difficult. And difficult it was because I was unable to eat and lost 10 kilograms. I was reduced to skin and bones. I was unable to get out of bed and had to be lifted if I needed to stand up. My parents and sister were there all the time to assist me and to encourage me when I gained back some strength to walk. At that time, I feared walking on my own. I was thankful to have such a loving and supportive family. At the end of my treatment I contracted chicken pox, which meant two more weeks in hospital. By mid-1998, I completed my treatment, gained back my normal weight and went back to school. Fortunately, my time in the school was smooth and I was able to concentrate fully on my studies. When I was in Secondary 4, the school insisted that every student must take part in extra-curricular activities. That was when I decided to sign up for a sports day event. When my father knew about this, he began pushing me to run. He brought me to stadiums and to places like MacRitchie Reservoir and East Coast Park to practise. First, it was just jogging; then I got into a competitive mode and it became like ‘just go for it, just run!’ I started taking part in the school’s track and field events, coming in third in one year and then fifth in another. I finally won first place in the school’s 3000-metre race.

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I am really grateful to my father for motivating and pushing me to do all these. Because of him I am now fit and living a healthy lifestyle. I started participating in other events like the Adidas Sundown Marathon (10km) and the Standard Chartered Marathon (10km). I am also very grateful to Children’s Cancer Foundation (CCF) for helping me get through my two years of treatment. I attended many of their outings and events such as the Annual Family Retreat. They made me forget the pain of the treatments and made me happy as well as improved my mental and physical resilience. The opportunity of meeting other children who were in the same situation as myself made me realise that I was not alone in the fight against cancer. These days, I have been helping out at CCF events. It is great to be on the organising side of the events rather than the participating side. When I see the children having fun and laughing, I feel joyful that now I am giving back to the community that had supported me in my time of need. I also did part-time studies, ad-hoc jobs and volunteering work. Along the way, I received a silver award for the Mathematical Olympiad and a diploma in Business IT. I went through National Service working as a dental assistantcum-receptionist, and was awarded a level 1 paramedic certificate in the process. I have now graduated from my degree course in Accountancy. My experience told me that for anything negative there is always a positive side. I tell cancer patients not to give up and when the treatment gets tough, they should focus on happy things.

As a person, I have changed for the better. I used to be selfcentred, short-tempered and easily agitated. Now I can stay calm and focused. I am more willing to give and share. I feel like I have… a new soul! Sometimes, when I am jogging I get momentary flashes of those difficult days when I was undergoing cancer treatment. I am reminded of the Portugese proverb: What is hard to bear is sweet to remember. Perhaps I have forgotten how hard it was. Cancer for me now is just a flash in the past. I had run that greatest marathon and I feel like a winner!

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Danish

old years 8 udent st chool s rimary P phoma ym or of L d Surviv ears ol y d at 2 e iagnos D

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M

‘can now years gled not k ight goo did die if me er! I dIa me I may ti nc u an that r. Ca h. Yo nish r? At ance healt s Da e c ur ei d of Canc ad. for o y nam I old. e die ing s bad is rd h ook ears ncer, ss. It I hea ddy l wo y d ca t a d ne da d an ants ad ill at I h and a die areP rd th ery b ying u v a dp cr n b Sq r I he gran it is a as I i geB o lder, that . Afte hy w ut t it so pon W ou do I wa like S r-old me? e ab foun when o-yea ld m d to and hings e r to tw rt Then pute ppen othe mmy to all g of at ha t mu pen y com h u in on m s hap er. B think cer. y, “W thing canc umm t can elf by e ys week dm uch had you g ed m aske Did s every hat I I t lm l and ald)? now t I ca mmy spit a yself not k d. Bu tak (b n. Mu he ho t e fm ne bo I did ns. visit rgart os o ead ighte phot jectio ad to kinde my h bit fr in s in Ih I s aw felt a y wa was ater e the urfs. hen l ? Wh hen I ot lik n w Sm ng dt ful. isits and I did so lo s, an it al v re aw e?” cer. l for onth we it a they osp can ix m to m they hosp the h for s e of ause only d s l c r of ry s be ecau spit a ne an ren o ome d ve in ho edici nurse ent b child ber s as s han he em em atm t w k y’ m r tre to t a aid I I was t like umm s. I re go fo my s to m Five. I had id no onth n h d to d m Mum eld o ed. I d Hig ll day ns an I had er six d, I h ur an rowd me a that ectio noth c e inj for a scare with inos a very s of to m the D was t ayed I was d lot ned s y i n it n . arne use expla They ots a Whe work ere l like B beca f me. ried. rc eo it al re w ngs from r i e The hosp of th I nev ke ca leave think to t a e the king . But s ik nd ere for t a not l eedle yes a ys th I did ith n olded my e alwa w t sc were close d me s go ould addy poke lway w d ddy a and I y and or da ghtly umm o ti m it al. P , but hosp ared n sc ght i all ni and

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D i h Danish

But I do not re member anything muc h. I do not re d me member muc who helpe e. the pain. I on h of e people th rienc ly remember These are g my cancer expe attending Ch (CCF) Childre durin ildren’s Canc n’s Day celeb er Foundation rations and p playing on the laying with th slides at the in e computer g ames. I also re door playgrou nd. member I am now in s chool and the re is a lot of h with my class omework and mates. I have tuition. But I a ten good frien m happy to g soccer, catch ds in class. O o to school a ing and game nly some of th nd play s like ‘Touch th em know that e wall’ and ‘K I had cancer. ick the bottle’. We play I like the Mala y subject bes t because it ‘excellent’ for is very easy. my exams. I fi The teacher nd English C is very kind. words. Proble omprehensio She always g m sums are a n very difficult ives me lso difficult. because there are so many d ifficult

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But I will study hard to do well in school . I want to join the sc want to be a soccer hool’s track and fiel player. My favourite d team. I also soccer players are and Petr Cech. Fernando Torres, W ayne Rooney Now mummy takes me to the hospital only once a year. Sh just like my sister. C e says I am healthy ancer was like a hu and normal ge bad monster try monster, just like Sp ing to catch me. But nster iderman! I defeated the
My life after treatment.

Dan ish Dani Danish

My to

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o

What I hope for myself in the future.

When I was scared, I held onto mummy’s hand very tightly and I would close my eyes and think of things like Barney the Dinosaur and High Five.

I will study hard to do well in scho ol. I want to join the scho ol’s track and field team.

What I do not like during treatment.

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Tracy

d ears ol 19 y t studen y iversit Un e f Acut ukaemia o rvivor stic Le Su d phobla Lym ears ol y at 10 gnosed Dia

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Getting out of the Gutter

Congratulations Tracy! It’s been six years since your diagnosis; you’re on your way…” A hint of pride rang in my doctor’s voice as she flipped through my first protocol sheets.

I blinked. Once, and then twice. I stared at the leaf of paper that traced the nightmare… Or was it a dream? These days it is hard to decide if those three years were a blessing, or a curse. Perhaps it was both. This is not a tear-jerker for me to pour out the grievances of ‘The Cancer Years’. Nor is this a sugarcoated account of how brave I was to have gone through the whole episode. It is merely a reflection of who I was during that period and how I survived the death sentence. Death is a ‘forbidden’ word, but I have come to face it with the courage of a man standing on the edge of a cliff. Death becomes real when you are told that you have Leukaemia. Death starts to haunt you at every corner of the hospital. Death ceases to be a word from the English vocabulary. Instead, it manifests itself as a phantom that lurks from beneath dinner plates and comfy beds. I saw it in the faces of my parents, my friends, my teachers and even in those rare moments when I actually looked into the mirror. There was no way I could avoid it. Yet, there is a misconception that Leukaemia equals death. No doubt it is a battlefield and the odds against us are 2:1 but every once in a while, we do turn the tables against the odds. I was ten years and eleven months old when my diagnosis was announced, “You have Leukaemia.” – as simple as that. Those three words brought my world to a grinding halt. I remember sitting on the hospital bed, shell-shocked. I was oblivious to the tears running down my mother’s cheeks, or the pain in her eyes. I could not hear the rest of what my doctor was telling me. I could not feel the soft mattress I sat on. At that moment I became a floating ghost... “Will I die?” I heard myself utter softly. I swore that was not my voice, so calm and mechanical. Inside me I was terror-stricken. Maybe if I pulled the covers over my head, everything and everyone would disappear and the world would be right again.

“No, you won’t! There’s a cure for childhood cancer and the survival rates are very high. Starting tomorrow, go through with the treatment so that you’ll be alright again.” The voice of my doctor entered my ears, amplified a thousand times over. I felt a warm hand on my cold ones. Finally, I turned to my mother. Her sobs wrenched my heart. “Mummy, will you be here for me?” She was bathed in tears. I turned to my doctor, and everything became a blur. I remember being hit by a load of information regarding Leukaemia before being whisked into the Pediatrics Inpatient Cancer Centre. It was as though I was stumbling through a winter’s fog that never cleared. Needles and intravenous drips were the ‘joys’ of my life. Upon reaching the second year of treatment, I pleaded (over several months) with my mother and the doctor to let me go back to school. I followed my doctor’s instructions strictly and took all the necessary precautions to prevent myself from getting an infection. Finally, during my weekly review, I got the green light. I was excited for a whole week. I squealed with eagerness as I packed my schoolbag and shook with nervous anticipation as I fingered my textbooks. Little did I know what awaited me. Three days into school, I requested to stay at home. To say that school was a living hell was a gross understatement. People kept staring at me, and my so-called friends stood in a corner trying to hide their faces while others called me names and pushed me away. No one even looked at me. To top it all off, after missing months of school, I was lagging behind in my studies and could barely follow the lessons. Needless to say, I never wanted to go back to school again. I could not see it then, but that whole school fiasco was truly a blessing in disguise. Though I was shunned and became the number one target for gossip, I marvelled at how much my mother loved me. She would send me to school every day via taxi and sat in the canteen to wait till my lunch break. When I reached the canteen, lunch would be ready on the table with my mother fussing over me. She would continue to sit in the canteen until school ended, before heaving my schoolbag over her shoulder, grasping my hand in hers, and taking me home. She never once complained, and she tried to hide those lines of fatigue clearly etched in her increasingly haggard face. I know that I can never say enough of “I love you” or “Thank you” to my mother. She did not know,

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of my illness. I was stuck to the hospital bed 24/7 and adjusting to the side-effects of my treatment. Clara faced my uncontrollable temper tantrums head-on and sat through countless hours, hearing me complain about how unfair the world was. After every session, she would leave me with a piece of advice and a sweet smile. I must admit that I was frustrated and irritated at how patient she was with me. I could not believe that anyone could be this sincere and kind. But she won me over totally after a month, and became my secret confidant in things I could not talk about to my mum. When she saw that I was more accepting of her, books and games began to appear in her arms every time she came to visit. When Clara came one day empty-handed, my face fell. Apparently, I had read every single book in the CCF library. Clara laughed with gentle amusement as she told me this and asked me to try other activities instead. I requested to do stained glass art, something which I had always wanted to do when I was young but did not get down to doing it. The request was readily granted and for once I really smiled. Other than Clara, I managed to make a few new friends. It was my mother who introduced one of them to me. My mum had sought out another parent who had a daughter around my age. They must have had an unspoken bond forged through their common suffering, for they became fast friends. At last, my mum had someone with whom she could share her woes and worries without having to fear what the other party might think. They exchanged tips on how to care for us. When I first met her daughter, we were wary of each other, but it was not long before we became good friends. On another occasion, my mum came to me and asked me to go over to the bed opposite mine to talk to a boy there. “He’s around your age, but he’s alone and doesn’t know many people here yet,” she said. I did as I was told and went over to say “Hi” to the boy. I remember him looking at me for a while before returning the greeting. Not knowing what else to say, I went back to my bed. Inside me though, my heart raced and my hands shook. This was the first time in months since I spoke to a person of the opposite sex (other than my brother), and I was very emotional about it. Many people do not realise this, but the emotional adjustments that we go through are tremendous, especially for the girls. It is not easy to go back to society and fit in just like that. I did not dare to voice out my thoughts and feelings to my mother, knowing that she had enough to deal with. Instead, Clara was my listening ear and ‘Aunt Agony’. Being on the verge of puberty, I was constantly troubled by my looks, inability to communicate with the

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but there were many nights when I would wake up to hear her crying. I could see how much she berated herself for my illness and how she blamed herself for bringing me into this world. To my beautiful mother and all the beautiful mothers out there: You did not do anything wrong in bringing your child into this world. You have given life to your child and that can never be repaid. You thought you did not do enough, but you already have. You thought you failed, but in keeping the family together, you have gotten full marks. Within the first few weeks of my chemotherapy treatment, I was introduced to Clara, a young social worker from Children’s Cancer Foundation (CCF). I was then in denial

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Cancer does not go away and disappear in a poof like the way Cinderella’s fairy-godmother conjured a carriage out of a pumpkin. It hangs around even after you think you are done with the treatment. Instead of having your ‘happily ever after’, it brings about wave after wave of new problems. Going back to school, getting back the life you lost and living with the memory still fresh, proved to be more complex than I thought. Taking my GCE (General Certificate of Education) ‘O’level exams was not easy after my long absence from school. I felt like I had walked straight into another nightmare after escaping from a particularly bad one. My brother was my sole comfort as I progressed to secondary school. He would buy me small gifts during Valentine’s Day and slip them into my pencil case so that I would be the only girl in my whole class with a heart-shaped necklace to speak of. He would buy me apple pie ice-cream to soothe my frustration and take me to the in-places in town so that I would not lose out to my peers. He is honestly the best brother anyone can ever have and I love him so much. Even though he was neglected by my parents while I was going through treatment, he never once blamed me and instead, loves me more to make up for the pain I have been through. Rebuilding your life is not easy. Before I was diagnosed with Leukaemia, I was on my way to becoming a dancer — a dream I had since young. Leukaemia destroyed all my hopes and chances of ever becoming a professional dancer. Having a part of my foot slightly deformed gave me a good enough excuse to stop dancing entirely. But I was inspired to dance again by a particular friend of mine. He told me that even while he was on steroids, he continued to play soccer. Despite everything that had happened to him, he still willingly and wholeheartedly gives his time to others. I am glad that I met him in the hospital that fateful day so many years ago. What was once a nightmare to me is now a blessing in disguise. But if not for this strangely distorted life lesson, I would not have opened my eyes to the other paths that I could take. I would not have understood how precious my family is, could not have found the courage to love and might never have made friends who understand this part of my life. To the public, when you see a child with a bald head and a moon-like face, do not just see a dying child. See, instead, a kid with a brave heart and a loving family. See a kid who also has dreams of becoming a doctor, a police officer or a dancer. See a kid who longs for human contact. Do not ostracise the child. Do not think that you can get infected with the illness because childhood cancer is not even hereditary and certainly cannot be transmitted. To all the cancer patients and survivors out there, keep living. Hold on to every strand of faith and hang in there. It is your second chance to life, so live it well. Do not be afraid to love, dream and hope, because these three things will get us out of the gutter we were thrown into.

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opposite gender and seemingly unreachable dreams. It was nearing the seventh month of my diagnosis when I finally broke down. I had a particularly heated discussion with my mother in the kitchen and I dissolved into tears. It went on for a few hours while my helpless mother paced around the living room. I sat glued to the kitchen floor, refusing to move or talk to anyone. At a complete loss as to what to do, my mother finally called Clara and handed the phone over to me. Clara encouraged me and my mother to stop hiding our fears from each other and to talk about the issue. The defense mechanism I had built up finally thawed and to put it in a cliché manner, the sun reappeared after the storm. Before anyone thinks that everything became a bed of roses after this, it did not. How could it? Every day was filled with drugs, needles, blood transfusion and the most painful part of all – the side-effects. Every step I took along the corridors of the hospital was one filled with hope that I would wake up from this horrible nightmare. I have contemplated giving up many times. I was often tempted to run away from the hospital and let death claim me. I deluded myself into thinking that everything was not real, and that the nightmare would go away as soon I woke up, or got home. But the people who love me continue to inspire me each time I felt like giving up. So I tried my best to keep one foot in front of the other and walk towards the end of the road without raising the white flag.

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Jun Da

d t ears ol 17 y studen school ry conda Se e f Acut ukaemia o rvivor stic Le Su lf phobla Lym d a ha n at 9 a gnosed Dia d ears ol y

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Philosopher at Ten A
ow normal can the world be when you are nine and a half years old and you are told by the doctors that you will die in six months if you do not seek treatment? And treatment meant a thousand injections – 500 on each hand; three and a half years going in and out of the hospital; three years away from school; two relapses; a body irradiation and then a cranial irradiation and a cord blood transplant. These may be mere numbers to you, but that was what I had to endure after I found out I had cancer. I was nine and a half years old when I was diagnosed with Acute Lymphoblastic Leukaemia. For any nine-year-old going through cancer, how could the world not be full of thorns? You suffer mood swings as a result of the side-effects of treatment. One moment you feel really depressed and suddenly you feel angry and agitated. You could also be mean and overbearing to the people around you. My poor mother, how it must have hurt her when I screamed, “Don’t touch me!” I recall those tough, dark and daunting days when I was lying down in the middle of nowhere, feeling lost, lonely and dejected. The burden and the pain seemed so heavy.

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It then occurred to me that I could choose to whine over my misfortune or I could open my heart to the people around me. But I was afraid. The doctors looked stern and unapproachable; the nurses were busy; other patients seemed unfriendly. But I decided to give it a go. I started talking to the nurses. I found that by being friendly and cooperative, I not only lessened my own burden, I also made their job easier. I started having conversations with the nurses not only during the day, but at night as well. In the evening, when everyone was asleep, I would take my drip to the counter, sit down and start midnight chats with the nurses until I got shooed off to bed. Early the next day, when the doctors came for their morning rounds, I would also start a conversation with them. The doctors were similarly busy but

there was once when a five-minute chat turned into an hour-long conversation. In fact, one of doctors discovered that I was interested in art and drawing. She gave me a book of Japanese anime. I was truly grateful for her thoughtfulness. I also started getting to know the other patients. I discovered that the brother of one of the patients was my kindergarten classmate. We started chatting and soon became friends. Before long, all the other patients became my friends as well. It was distressing when some of the patients did not make it and passed on. But I accepted this as part of life. Many things are beyond our control. It simply reminded me how precious life is.

Through making friends with everybody, I discovered that accepting help is not a display of weakness. When one refuses to accept help because one is too proud and when the ego gets in the way, that then is weakness. The thorns in life are like hurdles. You have to jump over the hurdles each time they loom in front of you. Yet, if you look carefully, you will see the roses as well. It is as if the roses are tied to the side of the hurdles, and you will miss them if you move too fast. When people say negative things to me, I have learnt not to get angry. I recall the time when a Primary 4 boy came up to me and said sarcastically, “Oh you

d wn an sit do CAN C E R me to Some forces goal. SURVIVAL STORIES It same l of y life. carefu to the s of m e nt ad s rd. B mome ths le g goe are ha ave ny pa Ma rythin to h ome s e eve think. oal, y and a crim h. If your g re eas y pat ter all, it was a Af as ach ed it as if paths the e horn’. ou re ng a b e said eds mall ‘t hen y aking ,w s t r!” H e ne yas f seei n o nl nce time alway that o was o stead s. l the got ca t ages t really realise ock. In hly al n t I f thorn h er. Tha smoo differe or a s bed o ary 4. at nf ra canc . It ary 4 in Prim y be i eople ounte r path a Prim s only too. P ou ma y enc y wa ma ple harde ame u he bl eo it ke the es, yo e to p annot d fail, of ros you ta shoul ive tim One c . en ou ly. to g ments re wh nd if y ferent ly lead ary 5 ve dif ges a rn mo y com imate a st rim ult llen beha You le kes na t will e cha ther P ack. I rafts he ma u mor : Ano c s yo etb boy if handi e rose rary s offers to made empo see th ou e the yat mily, o give then y is onl l. his fa ave m 500 t g oa h And in ised $ but it er wit your g n. eauty and ra ou to n see ough, togeth y y, eing b s t hem ofte t bo se wa d ot , sold path ess n o tarted hat ad beads kindn ncer tails t elf. I s s. I d as ys de lue from My ca ew m ally w ly into ve va all the hat re to ren nious more. positi icing y o e ot me. T have ds an chanc s harm gan n will event ments y frien g, I be m d, om nd hin ny of or ba ngs a tive c everyt Nega nd thi with a good ew d ble things ther ngry t, revi up an get a over i , whe small l e say not ll from ill mul . ee th they hen a whole things life. I w not s ever a my fun. W hat and do t n W r al nders pact o having savou gener then u busy ce to e an im e in nd an so hav Peopl aid, a ul but the ch y are was s eautif miss ves in e the b s o el e. what th. becau tend t wer is pectiv thems s wor r pers the flo eople to put ome ll, p hat it i othe get bec say w e y an for is we ey ma ey hav e it for ients a l lic. Th admir ity. Th er pat ou in c c o y nderfu ub simpli own t n, can ok at eral p e wo d n lo Ofte at becam not sit the ge t. But eople rk, gre noran hen p oes of in life hey do t .W mewo e sh re ig gs a in th ho ou. ous e; ple th onsci e they to do g at y t of m self-c ookin e sim n fron ecaus great l i b s o too So th table en be ou. S . It wa y, it is ith the not ev hind y in wa or me f ay be ir w certa things eone rd cha they m t som imes the ha t ga on some ookin s? to sit y be l , it sciou ou ma on They self-c lk to y t to ta ou so re y t wan ay ask why a do no hey m tt le cer id tha f peop e can re afra mes, i eti ou, th ey a th oy Som s up t cause e. So it i be be ion. t mov may quest he firs t ey rong make en. Th the w childr ivor, to ty ng t/surv e you ay nas patien be lik you s d if shoul ely at t care do no ps we k clos o ey Perha re. uld lo and th they a e sho mind ot what . W m for do n ut the them s abo dmire efining a thing the d n and e ne of childr was o young nce xperie cer e n My ca

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it was even gre r when I could g o back to schoo Cancer makes l again. me appreciate my family, friend (CCF) staff and s, the nurses, d volunteers. Thei octors and Chi r acts of kindne ldren’s Cancer survive the ons ss, big or small, Foundation laught of treatm warm the heart ent. My elder b and help the ca when I was ho rother, who is fo ncer patient spitalised. By b ur years older th eing with me, ta an me, took tim concern for me lking to me and e to visit me far louder than playing with me, saying “I love yo he showed his u”. love and My goal is to st udy hard to pur sue tertiary educ character desig ation in art cour ner or artist. I lo ses. I hope to b ve to talk so you ecome an anim and then. Here can expect me to ator, or gameis one more for be dispensing w the record: Relax ords of wisdom , take the day as every now it opens itself to Beyond that, I just look forwar you. d to getting mar remember are no ried and living t the injections in my dream ho on my hands, b me. Now the nu ut the countless mbers that I friends that I ha ve made on this journey. ater to be scold ed by the teache

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ars old nt for 19 ye e enrolm g waitin tudies A ther s fur cursor re r of P phoma/ o Surviv e Lym g -linea ia B ukaem ars old Le ye at 14 ed agnos Di

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My Home, My Heaven

in class and second in the whole standard. I was the school’s MVP (Most Valued Person). I was good at sports – basketball, soccer, badminton, swimming… And then I was diagnosed with Leukaemia. I wanted to commit suicide but luckily my family’s love, care and encouragement came to the rescue. I knew I could not be so selfish as to end my miserable life. How would my family feel if I were to take such a rash action? Regardless of how hard the battle would be, I promised myself and my family that I would struggle on. I would not give up without a fight. I wanted to be a victor in this fight. I had to live for others, not only for myself. From then on I developed this motto: “Never Say Die!” I declared my ultimate aim: “I will fight to the very end”. And thus began the two-and-a-half-year battle against cancer. The chemotherapy treatment sessions were agonising. I experienced vomiting, nausea, headaches, constipation and severe weight loss, and a minor stroke. I was weak and my body was burning like I was on fire. My urine was hot and my face was bloated. I had diabetes and the daily injections were painful. I even became blind for two days. Yet the worst side-effect was the loss of my precious hair. Every time I looked at myself in the mirror, the bright reflection of my bald head made me feel like smashing the mirror. My dream of having smooth, silky celebrity hairstyles was dashed. I started living in fear of looking at my own reflection. It was my family who saved me from this misery. They were constantly praising my bald head. “It is cute,” they would tell me. The compliments were not only heart-warming; it gave me the confidence to look at myself again. Above all, they were always tolerating my outbursts. The side-effects of the chemotherapy made me very short-tempered. At one point I had hallucinations from some of the medication. People looked like animals to me. In

desperation, I would throw things on the floor. I resorted to punching and squeezing pillows. When I had diabetes, the result of complications from a certain medication, Dexa for short, I comforted myself that it would be for the short term, though I did worry that it might lead to a long-term condition. When my face was bloated and my hair gone, I dared not go out of the house. If I did, then I wore a beanie, and people would look at me like I was crazy to wear a beanie in such hot Singapore weather. Of course I could not explain why I was wearing the beanie. I just felt hurt, distraught and… crushed.

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dreadful punishment had befallen me. The ‘judge’ was Dr Allen Yeoh. All evidence pointed to my ‘guilt’. The screening tests for cancer cells proved that the diagnosis was correct. I was sentenced with Precursor B-lineage Lymphoma/ Leukemia. I was in shock. My parents and my eight-year-old sister said “I love you” at different times and then they hugged me. I was speechless to see my family crying. My mother and sister were crying but my father was holding back his tears. It was like a thousand knives stabbing my heart. For a whole week, I was traumatised. Every night I would wake up sobbing, drenched in sweat and paralysed with fear. Unanswered questions were cruising through my mind: Will I be cured? Will I be able to survive the treatment? Do my family members have to suffer with me? Will I lose all my friends? Will I become an outcast? Will I be discriminated against? Will anyone fall in love with me? Why must this happen to ME? Out of four billion people in this world, why me? Why is life so unfair? I feared death, yet I feared life. I felt like ending my life… I was then 14 years old. I really cared about my looks. I wanted to be a celebrity. In school, I was first

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When I went blind for two days, I thought that I was tired and therefore could not see. It was actually a blood clot in my brain. The clot was so severe that I had a stroke. Then everything was like a dramatic movie. My father became panicky. He ran out of the house and I heard him screaming and shouting for help. But nobody responded – maybe they thought he was drunk. After 20 minutes, my father calmed down and called the ambulance. I think it was then that my neighbours realised that my father’s call for help was real. There were many occasions when I felt pessimistic and depressed. That was when I would start questioning and doubting myself.’ Can I really carry on?’ I would ask myself. Each time I felt that way, my family would come to my rescue. My mother was always there, constantly monitoring my blood platelets, cooking healthier food for me and encouraging me. My sister became my movie buddy. Every night was movie night with my sister. Sometimes we would play games. Even though she did not like the wrestling games, she would force herself to play with me. Whenever I cried, she would cry with me. My father provided the financial support and spent time chatting with me. My aunt would visit me and give me money to buy DVDs and games. I recalled my uncle visiting me. When he saw me looking so down, he said, “If God wants to take a life away; I will sacrifice my life in place of yours.” I was touched by what he said. It helped lift the dark mood I was in. The treatments and side-effects made it impossible for me to attend school. Staying at home was fine as I started to pick up various hobbies. I took an interest in music, singing, Japanese drama and Japanese animation. I started watching lots of Hollywood and

Japanese se movies. My favourite artists range from Japanese celebrities to USA superstars. Japanese movies are great. I learnt something from watching these movies, such as moral al values and true friendship. I started imagining that I was a multi-talented singer and I practised singing every day. My sister was my loyal audience and judge for all my ‘performances’ at home. I started dreaming that I was a celebrity. I know it is stupid but I do feel that celebrities live very interesting and colourful lives. I even thought that if I train hard enough, maybe I can become a host for a talk show. In the beginning, my sister would say that my singing was good because she did not want to hurt me. Then one day she told me the truth. She said my singing was only “average” and that I was not going to make it as a singer. She said, “It’s time to wake up.” It was very hurtful to know the truth, but it got me thinking of other things I could do to become successful in life. But when I was finally able to go back to school after two years of medical leave, I was in for another round of challenge. I was now looked upon like an alien on crutches. I was an outcast. Nobody treated me like a normal person. If they should talk to me, it would be, “Do you need any help?” I could see pity in their eyes. When I tried to start a normal conversation, I would receive a cold look and the atmosphere would become tense. I felt insulted and humiliated. I felt depressed seeing other teenagers hanging out in groups while I was alone. I was an

extrovert with no friends! Once again, my family came to the rescue. School was hell, but home was heaven. Every time I returned home, I would feel at ease and all my worries would disappear. Then because no one was talking to me in school, I decided to study. I was then in Secondary 3 and the class I was in was quite slack. I began to do well in my academic work. Soon I became the smart guy in class. That was how I captured the attention of my classmates and by Secondary 4, everyone in my class became friends with me. I studied hard for my GCE (General Certificate of Education) ‘O’ Levels. Believe it or not, my hair was dropping again, not because of chemotherapy, but because of exam stress. I did well for my ‘O’ Levels and I was accepted by Ngee Ann Polytechnic to study accountancy. But I have chosen to delay my polytechnic course to pursue my interests in learning the Japanese language.

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I have experienced my family’s love for me. Now, I cherish them more than anything else in the world. I am as happy as a lark when I see smiles on their faces.

Instead of worrying about a relapse, I have chosen to view my cancer journey as a springboard to success. I think I am mentally stronger than a lot of people because I have made it through a difficult journey. To the public, I will tell them not to show pity to cancer patients. Instead, show care and concern and take the initiative to be a friend. The little you do will mean a lot. To cancer patients, I will tell them, “Think positively all the time; and have a goal because a goal will give you optimism and hope. Focus on the goal and overcome all obstacles.” To people who never had cancer, I urge them to treasure their lives and not to take anything for granted. I have certainly learnt to treasure and value my life as a result of my cancer journey. Looking at the future, my dream would be to become a successful businessman. I would like to travel around the world to see different cultures and countries like America and Japan. And if I have a girlfriend, I would definitely bring her along. Most importantly, I have experienced my family’s love for me. Now, I cherish them more than anything else in the world. I am as happy as a lark when I see smiles on their faces. I feel very contented by just spending time with them. Although I had to suffer cancer at such a young age, I still consider myself the luckiest man on earth. It warms my heart to know that I have a caring and loving family. Indeed, I have heaven on earth.

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Sulaiman

Sulaiman

d ears ol t 12 y tuden s school rimary P e f Acut ukaemia o rvivor stic Le Su d phobla Lym ears ol y d at 3 e iagnos D

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I disliked having to lie down; I enjoyed running. I did not like to stay still in one place. In school, I always came in first for running during Physical Education (PE) lessons. So it was irritating, frustrating and lonely for me. I got angry and upset that I could not run nor play. During the years of treatment, in and out of hospital, my worry was whether I would be strong again so that I could play. I had thoughts like, “What if I can’t play anymore? Then life would be very miserable” and “What if I can’t play my favourite game, soccer?” I got interested in soccer when I saw some boys playing it in the void deck where I stayed. I started playing with them. Now I am addicted to the sport. Whenever I play soccer, I am happy, it makes me forget about my sickness. But if I am weak, then I will not be able to play soccer. But I remember some good things at the hospital. I remember the trolley full of toys. Each time, I got to choose a toy. It was fun to play, but my IV (intravenous) tube got in the way. I could not really run around with the toy because of the tube. Whenever I was at the National University Hospital (NUH), I would go to the Children’s Cancer Foundation (CCF) playroom to have fun with the Xbox (a video game console). I also made friends with other cancer patients of my age and I would play games with them. Sadly, some of them passed on. I recall the grandmothers crying very loudly in the hospital. I also cried. Over the five-year period of treatment, I felt the strong love of my mother. When I was in the hospital, my mother and relatives decorated my room to make me feel better. They put glow-in-the-dark stars on the ceiling, and looking at them sometimes helped me to forget that I was in the hospital. I could read the kind words that they wrote to me on cards that they stuck on the wall of the hospital room. It made me happy that they were so concerned.

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More than a Cushion of Comfort
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said to my mother: “I hate you mama; I hate you for letting the doctor give me all this pain.” Unanswered questions were running in my mind: Why am I going to the hospital so often? What is the matter with me? Why is nobody telling me what is happening? My mother’s reply was, “I will gladly have all your pain if only that can cure you. Seeing you suffer is more painful than anything a mother could bear.” Somehow this reply touched me and made it easier for me to bear the pain. I was only three years old then, so I could not really remember everything. But I remember this. I think it was only when I was older that I was told about my illness. By then I could understand better. Then I knew. Still, I remember that day when I was diagnosed with Leukaemia. I wanted to play but I could not. It was the day before my elder sister’s birthday. All the children and my cousins were in my house. My mother and all my aunties were preparing for the birthday party. Everybody was so happy. I wanted to join in the fun but I felt pain all over my body. I felt tired and weak. Soon, I was having a high fever. I was taken to the hospital and after doing the blood tests, they confirmed that I had Leukaemia. When my mother heard the news, she did not tell me anything. I caught her crying many times. I was curious. “Why are you crying?” I would ask her but her reply was, “Nothing”. Yet I could see the hurt in her face. I knew she was hiding the pain from me. I remember being put into a room all alone. That was when I was having chemotherapy treatment in the Philippines. It felt so lonely. At least in Singapore I was not isolated. I also recalled all the injections that I had to go through. Each time they gave an injection, I tried not to cry. If I cried, they would have to do it again because they could not find my veins. But the worst thing for me was being forced to lie down on the bed.

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‘grounded’. Once I was riding a bicycle and I fell be ‘gr down. down I had a cut on my leg and my mother stopped from me fro playing – for one whole month! Then later, she allowed me to ride on my new bicycle. l But I must wear long pants, use the shin pad, put on m the seat belt and helmet, which had childish designs se on it. The helmet was so small and the bicycle was so big. I looked like a clown! Worst of all, they might think I am mummy’s boy. I knew my mother did not want me to injure myself and get an infection. She became overly protective of me. But I am a big boy now. Treating me like that would make me feel like I am still sick, even though I am already well. Still, my mother’s concern reminds me to be careful. After the cancer I became very forgetful, and I worry sometimes that I am slower at learning than my classmates. My priority now is to study. I feel I have to be smart to pass my examinations. I do not like people to think that I am stupid and laugh at me. Now I am more attentive in class and I can understand what the teacher is saying in class. CCF also found some tuition teachers to help me understand my schoolwork. Now, I am glad to say that my friends treat me normally even after I told them about my illness. When people treat me normally, I forget that I had cancer. Although my chemotherapy treatment lasted for five years, the pain I have been through these years have vanished because of the love and support from my family, especially my mother. I thank my mother for bearing all the suffering with me. I love you, mama. Thank you for your unconditional love.

My mother was often beside me at the hospital bed. Whenever she saw that I did not like the hospital food, she would cook food like chicken porridge for me to eat. When she stayed overnight with me, I asked her to sleep beside me on the bed so I could hug her like a pillow. She felt like a cushion. I fell asleep faster when I hugged her. I felt comforted that she could rest on the bed. It was so sad to see her sleeping on the chair. It must be very uncomfortable for her. In school, I did not really care very much when schoolmates stared at my botak (bald) head. I knew that they were laughing at me. I was irritated but only for a while, and then I was not bothered by it. At the shopping mall, when people stared at me, I also ignored them. I just walked on. Once I told one of my classmates that I had cancer. She turned to me and said, “You dying ah?” Again, I felt irritated, but I just kept quiet and soon forgot about it. After I finished treatment in Primary 2, my mother was still very concerned about me. At first I was angry with her. She discouraged me from playing excessively with my friends. “Why cannot play?” I would ask. My mother would say, “You may get your sickness again.” Whenever I had an injury, I would

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old years 25 r e tuto Privat e f Acut kaemia o urvivor astic Leu S bl d ympho L ears ol y at 10 d agnose Di

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Overcoming one day at a time

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used to complain to my mother, “Why do you always play mahjong? Your free time is always mahjong time. Why don’t you take us to the shopping mall like uncle who takes his children to go shopping? Why don’t you spend time with your children?” At that time my mother worked during the week, and then she spent the weekends at my grandmother’s house playing mahjong with my uncles and aunties. Then I fell sick. I was coughing for a long time. I began to look very pale. A family doctor sent me for blood tests and x-rays. Then I was sent to the hospital to check on my bone marrow. Later, they confirmed I had Leukaemia. That was the beginning of my fight for survival. When I was taking the first or second injection, I went into a fit. I ran in and out of the toilet wanting to vomit. I forced myself to vomit, causing the vein in my right eye to burst. My eye was all red, like Godzilla. I had

to go into the Intensive Care Unit (ICU). I went through two years of chemotherapy. All this while, my mother stayed with me in the hospital. I think there was no more mahjong for her. It must be quite tough. She was able to go back to mahjong when I got better, but then my father fell sick and she had to look after him as well. Throughout my hospital stay when I was first diagnosed, my auntie would visit me in the morning and bring food, mostly cooked by my grandmother. They knew I hated the hospital food. My auntie would visit me every day. Then in the evening, my father, a lorry driver, would bring my mother to the hospital and both of them would stay with me. Then later in the evening, my father would go home while my mother would stay overnight at the hospital. The next morning, my father would come and pick my mother and send her to work. I went back to school in Primary 5 and then I had a relapse in 1999 when I was in Secondary 1. At that time, my father felt that it was better to go for Chinese medicine. He went to see a medium who advised me not to seek Western treatment. The Western doctor did not approve of it, but he had no choice when my father insisted. So I was on chemotherapy which caused my body to “shut down” and I was also taking Chinese medicine to flush out the toxins in my blood. My body became very weak and my platelets and red blood cells were very low. I ended up in the ICU. I had to have a blood transfusion and I could only take my mother’s blood and not anybody else’s.

I cannot live without my mother. If I do not see her for one day or if I do not talk to her, I will feel very uneasy. Even when I was studying at the polytechnic, I would often prefer to go home rather than go out with my friends after school. Sometimes my mother would come back late from work and I would stay home and wait for her. My mother is very strong. She never cried in front of me. My father was also very good to me. After my relapse, I had a bone infection and I had to stay in hospital for almost a whole year. I also had to go for an operation. My bones became very weak and I had to go on a wheelchair. My father would visit me every day. He would carry me up and down from the wheelchair and into the lorry. He would take care of me every day. But, he fell sick. He was supposed to go for an operation for his kidney problem but before he could do so, he had a stroke that caused his body to be half-paralysed.

Once, when only both of us were at home (at that time, I had already stopped treatment), my father fell down and I was too weak to help him up. Both of us were very frustrated. He was on the floor and I could not help him up. We had to wait for my younger brother to come home to help him. My father passed away in 2008. I feel a bit guilty when I think of my brother. He was in Primary 1 when I was first diagnosed with cancer. Because of all the attention on me, my brother was neglected. From Primary 1 to 6, he had very poor school results. He failed mostly everything. My mother could not coach him because she is not highly educated herself. She also could not supervise him to do homework because she was busy looking after me. Yet, he was a great brother to me. When he was in Primary 5, he would take the MRT to visit me in hospital every Saturday.

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He brought me food cooked by my grandma. Every Sunday, he would visit me with my parents and he would stay on after my father went off to take my mother home to rest. When I was wheelchair-bound, he would wheel me home every day after school and take care of me when my parents were not at home. In fact, there were so many people who were good to me. There was my grandmother who would cook whatever I wanted to eat. Today I ‘order’ my food and tomorrow it would be cooked for me. There were also many volunteers from Children’s Cancer Foundation (CCF) who came to play with me and keep me company. Some of them even visited me after office hours. I was glad for this because it kept my mind off the pain. When I was in Secondary 4, there was a CCF volunteer who found another volunteer to give me home tuition for Mathematics. That was how I survived my General Certificate of Education (GCE) ‘O’ levels. There were also my secondary and polytechnic friends who helped look after me. They wheeled me around. They understood my medical condition and were very helpful. Despite all that I have gone through, I still go through life with a positive attitude. I would say it was not easy to accept the relapse. But I believe I have a very strong willpower to pull myself through every critical period. I recall once when my Port-A-Cath was blocked and the doctor wanted to clear the blockage. It was very painful. I am quite a bad-tempered person, or you can say, strong-willed. I started scolding the doctor and asking for another one (I think I became quite well-known in the hospital for scolding the doctors). But he ignored me and kept poking at my chest.

re a lot ung; there a I am still yo een, a lot I have not s of things . I just ave not done of things I h e that. cannot go lik
Finally, he gave up and another doctor came and did it for me and it was okay. Looking back, I realise I behaved quite childishly, but at that point in time, I was so frustrated going through the treatment. At another time, my whole mouth was swollen because of ulcers resulting from chemotherapy. My lips were all dry, red and cracked. To cope with all the pain and discomfort, I would spend my time doing handicraft. In fact, I liked doing it so much that at one point I used up all the coloured sand at the CCF Family Support Centre in the hospital. Being on a wheelchair also gave me some problems. In school, my classmates had to take turns to push me around. Sometimes they pushed me to a place and then forgot to push me back. I was left waiting for somebody to come and push me. The second round of radiotherapy treatment for my relapse affected my hearing. I was about 14 or 15 years old then. I could not hear the teacher talking. My relatives talked and I would say, “Huh? Huh? Huh?” Then they started to make fun of me. When I misinterpreted what I heard, they would just laugh at me. It was no fun to be laughed at. It was also painful to have somebody talking to you and then half-way

through the conversation, the person would stop talking and walk away. Sometimes when my schoolmates make fun of me because of my hearing, I would get angry but never for long. Sometimes, I would scold them. I resorted to lip-reading but that was tough because many people just mumbled their words. At night, when I could not see the person properly, I also would not be able to lip-read. It was my mum’s friend who felt that something was wrong and I was finally sent to an ENT (Ear, Nose and Throat) doctor. I was diagnosed to have a hearing problem. By then, I was already in Secondary 4. My lowest point was when I was rejected from a job after I graduated. I felt that it was because of my hearing problem. My polytechnic school friends are all working now and drawing a good salary. I would also like to get a good salary so that I can give my mum an allowance. But, I accept everything as fate. During my first diagnosis of cancer, I told myself: I am still young; there are a lot of things I have not seen, a lot of things I have not done. I just cannot go like that. I have to experience life first. Later when I relapsed, I just told myself that this is part of my journey in life. It is written in the ‘book’ and I cannot run away from it. I just had to go through all the treatment. Sometimes I would cry. But, I never cry during the day. I would cry at night before I sleep. But next morning, I am okay. I often compare myself to those who are less fortunate. For example, in the hospital, I saw babies going through treatment and I feel more

fortunate than the poor babies. When I feel very sad because of my hearing problem, I would think, “There are many people worse off than me. I cannot hear properly, but others are totally deaf and blind as well. I still can see.” Now I take life one day at a time, one hour at a time and even one second at a time. You really cannot predict what will happen next. Having cancer made me treasure people around me more. Of course, if I had the choice, I would choose not to have cancer because the hospital bills are so expensive. However, I think that if I did not have cancer, I would not have the chance to know so many good people. Before having cancer I did not really treasure my family, now I treasure them a lot, especially my mum. I have become more positive in life. My goal in life is to earn a lot of money so my mother does not need to work, so she can play mahjong. I have been through a lot – chemotherapy, radiotherapy, treatment side-effects, operations, scars and hearing about other cancer patients passing away. I have survived all the critical periods of my cancer journey. I have managed to free myself of my wheelchair. I see each mistake or failure as a lesson learnt and a new experience gained. I believe it is how determined you are to pick yourself up through each failure; how determined you are to stand up and fight again. No one’s life is always smooth and perfect. If anyone should have a child with cancer, I would tell them it is not shi jie mo ri (end of the world). Just do not be too anxious and concentrate on one day at a time. Be strong and do not neglect yourself while taking care of the child. Life is fated, do not think or worry too much.

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Ying Wen

ars old t 20 ye tuden s chnic a olyte arcom P c Osteos f d vivor o Sur ears ol at 14 y d agnose Di

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ging From the Darkness of the Cocoon Emer
I knew I was going to face a tough journey ahead, but being the optimist that I am, I was pretty sure that I was going to live through it.
t was actually a bit strange. I was diagnosed with bone cancer but yet I was not emotional about it though everyone around me was. My mother kept crying. I comforted her, “It’s no big deal,” I said, “Never mind, don’t worry.” I knew I was going to face a tough journey ahead, but being the optimist that I am, I was pretty sure that I was going to live through it. I even thought it would be fun to miss school. However, it was not long before my optimism started to fade. The constant physical pain and suffering caused by chemotherapy and the emotional pain caused by the loneliness of being trapped within the four walls of the hospital room came crashing down on me. Every day that I spent in the hospital, I would be asking the nurse when I would be discharged. As a result of chemotherapy, I would go on for days without eating. All day long, I would be lying on the bed, trying to sleep to escape the pain. There were times when I could not close my mouth because there were too many ulcers caused by my suppressed immune system. Every time I moved my mouth or my tongue slightly, I would agitate the ulcers and the pain would be unbearable. I had to put ice in my mouth to help numb the pain. There were other times when I had high fever. I would be shivering with cold and I would ask for blankets, but the doctors denied me the blankets saying that they could make my fever go higher leading to brain damage. They gave me a water pillow instead.

I

One event which I remember vividly and which helped me in my resolve to fight on was during one Christmas when I was in the hospital. A little girl, around five years old, who had just completed her course of chemotherapy, had come to the ward with her mother to distribute presents. Seeing her brave act brought me a smile. If such a young girl could survive the treatment, I could too. So, whenever I was feeling really down, I would visualise the last day of my treatment and that helped me to pull through. The next day, I would be OK again. Losing hair as a result of chemotherapy was no big deal to me. Other things were more pressing, like boredom and loneliness. To overcome the agonising boredom, I started to read. Reading helped to distract me; it took me away from my hospital situation to another place, another world. During the one-and-a-half years in hospital, I must have read close to two hundred books. Each time before I was to be warded, I would make a trip to the EMF bookstore at the hospital. I read all kinds of books. I discovered later that reading actually gave me an edge in my studies. One of the things I did to help me cope with life in the hospital and side-effects of treatment was to keep my hospital wrist-tags. Each time I was discharged, I would throw the tag into a jar when I reached home. I would always visualise the day when I would throw in the last tag. I must have collected 20 to 30 tags. When that day finally arrived, I was so relieved I forgot all about my jar of wrist-tags.

The period after my surgery was the most distressful. Luckily, I was unconscious most of the time. I can only recall pressing the button for more morphine to relieve the pain. Other than that, I had no other choice but to bear the agony until it was over. During many of my depressed moments, I felt that life was not worth living. And I wanted to give up. Fortunately, I was showered with love from my parents. My mum would rush down after work every day to spend the evening with me, and my dad would come and visit me whenever he was free. During my darkest and loneliest moments, I still looked forward to the evenings when my mum would come and accompany me and that gave me the strength to carry on. The social workers and volunteers from Children’s Cancer Foundation (CCF) and Make-AWish Foundation also provided bright moments with their visits. A memorable event that the CCF social workers did was to celebrate my birthday with me when I had to spend it in hospital. Slowly, I began to cope with both the physical and the emotional pain and look at the brighter side of things.

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Looking back at my cancer journey, I liken it to the metamorphosis of a caterpillar into a butterfly. Before cancer, I was the caterpillar stuck on the underside of the leaf, with a very narrow view of the world; unable to see all the things that I was blessed with, unable to see the beauty that was around me. Then I was wrapped up in a cocoon, all dark and painful. I was trapped inside and could not do anything. I just had to bear with it. Finally, I emerged as a butterfly, able to see and appreciate the small things in life. It is a life-changing experience and it has changed me for the better – mentally of course, not physically. Physically, I faced many challenges too. When surgeons removed my tumour, they had to cut off part of my leg bone and put in an implant. A metal rod was glued to the bone, with a hinge at the knee for bending. I have gotten used to it after so many years, but I still cannot run, as it will wear the hinge out. The treatment resulted in my not having enough calcium and my hip bone slipped, so I had to have my hip bone fixed as well. After my hip operation, I had great difficulty walking and I was often on the wheelchair. I wanted my mother to push me around in the wheelchair but she made me walk. It took a lot of effort for me to walk on crutches, but she would continue to encourage me. She also made me do a lot of exercises, even though I was reluctant. But all these helped me regain my muscle strength. If my mum had not made me exercise and walk by myself, I would not have had recovered as quickly as I did. Today, I am able to swim and cycle. When I went back to school, I was two years behind my original class. Once in school, I realised that I should not be slack in my studies. I had been idle already for too long. By the time I did my GCE (General Certificate of Education) ‘O’ Levels, I had better results than many of my peers. I scored 6 A1s, 1 A2 and 1 B3.

So, I just want to let those who are currently going through what I had experienced to know that while there may be times when everything seems bleak, there is still a lot to live for. You cannot control the fact that you have cancer, but you can control how you feel and what you can do during the treatment period. Do not give in to depression. Continue fighting and do not give up hope, for one day you too will have your victory; you will see the light when you emerge from the cocoon.

When I finished treatment, my mother would allow me to make my own decisions in most areas. It was helpful because I learnt more about responsibility and I had more freedom. I chose to go to the polytechnic to study Psychology instead of going to the JC (Junior College). I understand that the polytechnic had an agreement with the university where polytechnic graduates could gain direct admission to the secondyear studies in the university. So, basically I would spend the same amount of time, whether I go to the JC or to the polytechnic. Occasionally I worry about the stigma associated with cancer – such as whether there will be discrimination when I apply for jobs or when I apply for scholarships. But I do not dwell too much on such worries. I am enjoying my studies. I am satisfied with life. The day I completed my treatment, I felt that the worst part of my life was over. Having won the battle against cancer, I now go through life feeling extremely blessed that I am able to go wherever my feet will take me, breathe without having to wear a mask, fall without fear and eat the food that I enjoy.

ons and i ’ reflect Patients e stories h ews of t revi
Although many childhood cancer survivors have completed their treatments and survived their illness, there are still many others who are in the process of battling with their illness and receiving treatment. These brave warriors are struggling with the illness in hopes of recovery. We invited some of them to read the survivors’ stories and share their reflections…
re there a nd that ea ot alon ). I also t I am n ia (ALL m tha be Leukae I learnt eed to oblastic stories, ese ymph that I n te L From th up, and ith Acu to give dren w hil not other c portant ed it is im ppens. lso miss rnt that what ha lea ause I a atter m bec le, such eous no stories y peop courag e of the an on ion y that m un Da in oundat e with J el happ ancer F o fe relat n C als l ular, I ca not fee wise, I hildren’s In partic from C ne. Like em, I do rs alo o th eep oluntee nd felt alking t p and k ff and v chool a . After t s er me u y, sta e me e il ag y will ch ds, fam encour as frien sad, the me and am out When I care ab illness. (CCF) is ry kind ne in th een ve b alo er. ey have ospital. that I am r broth in the h nds. Th l frie younge pied u oo nd me occ my sch ents or other a missed h my m assignm g o rk ol, e throu a, I als omewo m scho about m e Jun D ct my h Lik ther fro colle sking to na e. r bro ve bee school bout m younge and ha oes to d ask a es my g , an tch mother lper) fe n for me hen my stic he concer W w ome uld sho bibik (d t ates wo en my ve me. sm wh and tha rt and lo nd clas rs a t alone, uppo s he no nds my teac ple who they are ore frie any peo ow that have m re m ill kn ey w There a is book when th ers of th happier feel read hat the ter and ess bet I hope t e illn on. fight th er them ey can th nd che a ort them to supp yyan Bin ad Hafi Basuri
The stories in this book are very real because I have experienced similar situations during my cancer journey and it reminded me about what I went through. Therefore, I can understand the difficulties and pain that the survivors went through. Like them, when I lost my hair and needed to wear a mask, I felt people staring at me. Hospital stay was very boring. I also experienced the side-effects of chemotherapy. I could not sleep and it affected my mood. Because of the medication, I was unhappy and angry without any reasons. After reading the stories, it made me realise that I am not the only one who is suffering. I really admire how some survivors managed to overcome the challenges in their illness and have confidence for their future. I never expect that after treatment, I could live an exciting life. But after reading the stories, I felt that I need to treasure my life more, and I must do whatever I dream of doing without having any regrets. The stories are telling cancer patients not to be anxious, and to go through the treatment bravely. To the readers, do not wait till you fall sick to care about your family members. To the patients, you are not alone in this cancer journey. Be careful about what you eat and take good care of yourselves, and at the same time, do not give up easily. Huiting Sng Hui old 17 years ol with Diagnosed wi Acute Lymphoblastic Leukaemia

m mia Muham Leukae ld blastic ho rs o te Lymp 13 yea ith Acu sed w Diagno

I learnt from the cancer survivors’ stories that as cancer patients, we have to accept that sometimes, things do not go our way, and things might even go out of control. Although having cancer is not what we wanted, we can choose how to face it. The best way, of course, is to believe that everything will be alright. One story in particular struck me. Jun Da spoke about making an alternative choice of confronting and accepting what we are going through. For him, he decided to go through the course of chemotherapy by familiarising himself with the hospital staff… Not only did it keep him in a healthy state of mind, it also created fond memories for him. By talking with the hospital staff, he created a special bond with them, and with bonding, he trusted the hospital staff to do all possible to minimise the pain from the treatment procedures. Jun Da wants us to know that receiving help from others is not a sign of weakness, and that accepting help can improve our well-being during treatment. Like him, I did refuse help from people around me. But one cannot go through life without help from family and friends. Like Jun Da, I also do put myself in the shoes of the general public. People always stare at me, but I do not mind at all. It is because people do not know much about cancer and they do not often see people wearing a mask and hat or realise that the person is bald. It is up to us cancer patients to share about what we are going through and that cancer is not contagious. After reading the stories, I thought a lot and realised that having cancer is one of the worst and the best thing that has happened to me. Thanks to cancer, I learnt to treasure the people around me and realise how precious life is. Having cancer gave me the extra knowledge about medical science so I can give my friends in school something to ‘wow’ about. Although it gives me a hard time, I will be proud to say that I am a cancer survivor when all the treatments are over. This journey is tough, but I am not going to bow my head low to fate. I am going to fight my way through. Time really passes by faster when I feel happy and optimistic. Soon, I will have to return for the next cycle of chemotherapy. And the whole process begins again. I hope that the readers of this book will learn from the cancer survivors featured here. Open your heart to everyone. Do not keep all the pain and suffering to yourself. Also, slow down the pace of your life, and pay attention to all the little things that you have missed out. Take time too, to bond with your family, if you have not done so. Natalie Wong 15 years old Diagnosed with Osteosarcoma

I like Jun Da’s story. His cancer journey taught him to know the meaning of life and gave him the confidence to move ahead. Like Jun Da, I have become more positive and now I look at things from different angles. Initially, it was very difficult for me to go through the chemotherapy. It was very painful and I experienced a lot of changes. My eating habits changed and I felt my freedom was curbed. At that time, I was always thinking why I was different from my peers. Others got to eat what they liked and they had unlimited freedom, but I was ‘imprisoned’ in the hospital and at home. Jun Da had countless injections, so did I. Like him, I too suffered much pain. I am still undergoing chemotherapy and my courage matches that of Jun Da to see me through the whole treatment. I have also learnt to be stronger. When I encountered failure, I managed to think of ways to motivate myself to go on. I have overcome obstacles which I did not think I would be able to manage if I did not go through chemotherapy. I realised like Jun Da, that I have grown as a person after going through such a difficult experience. I feel encouraged by the book because after reading the stories, I know that I am not alone as many others have gone through the same experience as myself. This motivates me to move on and complete the chemotherapy like what others have done. I would like to say to other cancer patients reading the story that “Life isn’t about waiting for the rain to stop but it is about learning how to dance in the rain”. Ang Wei Ya 15 years old Diagnosed with Acute Lymphoblastic Leukaemia Di

Each heart-warming story narrates the trials and triumphs of an individual's cancer journey. They serve to remind us that with perseverance, courage and strength, one can learn to live with gusto and passion even in the face of adversity. The honest accounts are not meant to gain sympathy but rather to help readers understand what a cancer patient goes through.
Bharathi Ganesh Polytechnic student Diagnosed with Acute Lymphoblastic Leukaemia Completed treatment on January 2010

"Life is awesome!" Atikah acclaimed. After reading this book, life is indeed awesome. An intriguing read full with insights about the world of childhood cancer survivors. The stories were presented in a simple and yet highly effective way. The lives of many childhood cancer survivors have touched me greatly. The book highlights the common misunderstanding and misconceptions about cancers in children. This wonderful book has altered my impressions of childhood cancers. These children are no different from us. Like us, they pursue a happier, more fulfilling and meaningful life. A fascinating book that is a must read for fellow educators, social workers, healthcare workers and others who want to explore the world of childhood cancer survivors.
Tan Kian Boon Teacher CCF volunteer (Tutor, play personnel and events)