T gether We Care
life after
cancer
A new day has come
A
Special Edition for Cancer Care
Dear Reader,
He was scared. He perhaps thought the end would be different, but now that he had a new lease in life, he had a whole world of opportunities – and uncertainties – to look forward to. That was daunting. No doubt, there was also a fear that the cancer could come back. And yet, he moved on. His employer welcomed him back, and he wept in joy when, two years after his remission, he welcomed his second child into the world. I’d like to imagine that A New Day Has Come is my humble way to pay tribute to the strengths of cancer survivors such as my uncle. As the final entry into the Together We Care trilogy, a series presented by the National Cancer Council Malaysia (MAKNA) in collaboration with CCM Pharmaceuticals and HealthToday, it contains advice and words of comfort to help you look forward to the days ahead of you.
Foreword by MAKNA With cancer or any other disease for that matter, it has always been the case that collaboration from various segments of society is a necessary ingredient for breakthrough. As a society, our fight against cancer needs to be a concerted effort with different individuals and organizations bringing to the table their own expertise and capacities – which will allow for the efficient use of resources towards addressing the cancer challenge with successful results. This cancer information series, a result of the collaboration between HealthToday, CCM Pharmaceuticals Sdn Bhd and MAKNA, is a fine example of putting forward one’s expertise to contribute towards tackling a larger issue.
Lim Teck Choon
For more than two decades of fighting cancer, MAKNA has worked with numerous cancer patients, survivors, families, caregivers, hospitals, government agencies, companies, NGOs, individuals, researchers and the general public. Our approach is focused on these partnerships and in the bringing together of different segments of society who can contribute best in different areas towards the cancer cause. There are currently a number of programmes that MAKNA carries out in collaboration with other organizations, such as our cancer centre jointly run with Pusat Perubatan Universiti Kebangsaan Malaysia, our bursary assistance programme which receives referrals from 92 government hospitals via the Department of Medical Social Work – the success of each programme depends on the strength of MAKNA and its partners’ teamwork. As clichéd as it may sound, together, we achieve more.
Our Partners: Publisher Yasunobu Sakai
Head of Marketing Violet Lew
Editorial Advisor Saras Ramiya
Business Team Lead Choong Miew Ling
Writer Lim Teck Choon
Business Manager Sharlyn Tan
Designer Ho Kan Keong Production Coordinators Pramila Lingam Ho Kan Keong
The support from MAKNA as helpful as it is only covers but a fraction of the cancer incidences in the country. It is therefore fortunate that there are many other organizations that also support the cause against cancer. Yet, still many cancer patients are facing a lonely battle against cancer, unaware of the support available to them. Awareness and outreach are therefore still very much of a challenge for us here in Malaysia. In light of this, I wish to thank you, the reader, for taking the important step of picking up this booklet and making the decision to learn more about cancer. By raising your own awareness and reaching out to someone who might benefit from the information in this booklet, you are making a significant difference.
DATO’ MOHD FARID ARIFFIN Founder and President is published by MIMS.
PP9626/12/2012 (031440) (Malaysia)
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Foreword by MAKNA
My uncle had leukaemia. He was never far from my mind when I worked on this booklet. There were times when he put on a strong and cheerful face, just as there were times when he wept and wished that his suffering would end. I don’t remember much of that time as it was decades ago, but I do remember clearly his face when he was told that his cancer had entered remission.
Am I cured?
Y
ou no longer have to undergo treatment. However, this fortunate turn of events is a little more complicated than being “cured”. In fact, doctors do not use the word “cure” – the proper term is “remission”. We will share with you what it means to enter remission and its significance to you for the rest of your life. This understanding will help you make the most of your future.
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So what does “remission” mean? There are two types of remission. • Partial remission means that either your tumour has decreased in size or your cancer cells have reduced in number. This means you can take a “break” from treatment, although your health will be continuously monitored by your healthcare team to make sure that the cancer is not growing back again.
• Complete remission means that tests, scans and exams all show no evidence of cancer cells still remaining in your body. While this is good news, there is currently no way to be absolutely sure – it is possible that some cancer cells manage to avoid being detected. Therefore, your healthcare team will still ask you to come back for medical check-ups.
Medical check-ups?
It is understandable that you may not want to step back into a hospital after what you have gone through, but please understand that it is important for your healthcare team to continue checking you for signs of cancer and other health problems. Therefore, please follow-up on medical appointments, even if you think that you are feeling better or there are no signs that you are ill.
Am I cured?
Am I cured?
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Will my cancer come back?
Will my cancer come back?
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Will my
cancer come back?
“
No” is the answer that you wish to hear, but the honest answer is that no one can be absolutely sure, not even your doctor. You are not alone if you fear that your cancer will come back. This fear is very common among cancer survivors. Even years later, many still worry that any small ache or discomfort they experience can be a sign that their cancer has returned. The fears may fade with time, but they may never go away completely.
If you are afraid, acknowledge and embrace your fear. Your fear is not a sign that you are weak – it is not something to be ashamed of. Instead, talk to your doctor and ask about ways to reduce your chances of recurrence. Here are some things you can do to manage your fear: • Take good care of yourself. Eat balanced, healthy meals – cut down on salt, sugar and fats while increasing the amount of fruits and
vegetables. Also, be physically active at least 30 minutes every day (consult your doctor on the most suitable types of activities you can do) and get enough sleep every day. • Keep up with your medical appointments. This allows your doctor to monitor your health as well as reassure you that you are still free of cancer. • If you have concerns, voice them. Clarify and confirm with your doctor on signs of recurrence that you
should watch out for. This way, there will be less unnecessary worrying and you will have more peace of mind. • Establish a normal routine. This helps keep you busy and take your mind off your fears. • Confide in someone. If your fears are disrupting your everyday life, you can seek the help of a counsellor or join a support group. Some people also find that recording their thoughts in a journal also helps to soothe their fears.
Picking up & moving on
U
ndergoing treatment for cancer can sometimes feel like a very long process. For many cancer survivors, as relieved and overjoyed they may be at knowing that their cancer has entered remission, they may also feel nervous, perhaps even scared, of moving on without the sense of security offered by the healthcare team. Some cancer survivors compare the feeling to that of being a child having to learn to walk all over again. It can be a scary feeling that leaves them feeling anxious. If you have such feelings, understand that they are common. While it may seem odd to experience fear, grief and/or loneliness when your cancer is in remission, there is nothing wrong with you.
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Stress You have focused on getting well all this while and now that you are ready to move ahead, you may find yourself facing many matters that you may need to deal with. • Relax. Don’t push yourself to do everything at once. Take time to establish a routine that you will be comfortable with first. • Take your time. If you prefer to take time to rest and enjoy leisure activities first, feel free to go ahead. Cancer recovery is not only about healing the body, but also the mind. If you need to recuperate mentally, give yourself time and the opportunity to do so. • Prioritise. List down all the things you have to tend to and do the most urgent things first. Having a list will help you organise your thoughts and actions better, and you will feel less stressed and overwhelmed as a result. • Get help when necessary. You don’t have to do everything alone. You should ask for help from family members or friends when you feel overwhelmed. There are also support groups and counsellors that can offer emotional support.
Picking up & moving on
Picking up & moving on
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Loneliness and anxiety Many cancer survivors feel isolated from others, as they feel that their experiences and/or changed outlook about life make it hard for them to relate to their family members and friends. Sometimes, cancer may drive these family members and friends away, and a cancer survivor may find himself or herself having fewer loved ones than before. It is also not uncommon for friends and family members of a cancer survivor to be unsure of how to relate to the person. If you are in any of these situations, you may feel lonely. Don’t suffer in silence alone, as you put yourself at risk of falling into depression.
Picking up & moving on
Picking up & moving on
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“I am no longer who I used to be...” If your cancer treatment has changed your appearance or the way you normally function, you may feel that you are no longer your own self. You may worry that you will be a burden to your loved ones, or that you may lose your partner’s affections (or if you are single, no one will find you attractive). All of these feelings may cause you to withdraw from your family and friends, causing a strain on your relationships with them. Here is some advice on how to deal with these feelings.
Tell your doctor about your feelings. If needed, you can be referred to someone who can help you through therapy, medication or both. Early diagnosis and prompt treatment are keys to successfully overcoming depression.
• Accept your feelings and take time to grieve. It is normal to feel such emotions – many cancer survivors go through the same phase. Give yourself time to grieve. However, if you have problems shaking off the grief, or the grief is so intense that it affects your daily life, please talk to a counsellor.
Reach out to other cancer survivors, either in real life or online. Your fellow cancer survivors will be some of the most supportive and loving people you will ever meet, and they will often inspire you and make you feel accepted again. You may even be moved to reach out to other cancer survivors and offer your own support to them. Either way, you are not alone; you should not be and you will never be.
• Focus on the positive. This seems like a cliché, but it is true. Look inside yourself to find out how you have changed for the better. Your experiences have made you stronger, perhaps, and you now cherish the people you have in your life more. Such realizations may not come easily to you, so take time to participate in cancer survivor support groups. When you are in the company of fellow cancer survivors who support and
commiserate with one another, you may find it easier to focus on the positive and adopt a more optimistic outlook about the days ahead. • Adopt a new outlook in life. There are ways to adapt to the changes in your appearance or lifestyle. For example, there is plenty of fashion advice for cancer survivors who wish to still look good despite the changes in their physical appearance, to be found online or from other cancer survivors.
Getting back on your feet
Getting back on your feet
Menopause
Sex and intimacy
Cancer treatment that involves hormonal changes can trigger menopause in cancer survivors, even if they are younger than 50. If you experience menopause, discuss with your doctor on how you can manage the symptoms.
Having some problems performing acts of intimacy is common among cancer survivors. Most of these problems are short term and can be treated.
Problems with memory, concentration and focus (“chemobrain”)
• Be honest with your partner about your problems. You need to talk about this with your partner, so that you can both approach intimacy at a pace that is comfortable for the both of you. • Talk to your doctor. Don’t be embarrassed; as someone who has treated many patients with cancer, your doctor will know how to best help you.
Fatigue and exhaustion There are many possible reasons for fatigue – they could be due to physical reasons (lack of proper nutrition, muscular weakness, etc), underlying health problems (anaemia, etc), mental reasons (stress, anxiety, etc) or even a combination of these. If your fatigue is severe enough to compromise your quality of life, talk to your doctor. A full medical checkup is often useful to determine the cause(s) of your fatigue and the best ways to manage it.
We do not know yet what causes it, but some cancer survivors report having problems such as poor memory or difficulty in finding common words to say during conversations and inability to concentrate. Such problems are attributed to a condition called “chemobrain”, which is a state that affects your brain’s ability to function as normal. This condition fortunately goes away in time for most cancer survivors. If you experience chemobrain, however, it can affect your ability to function at home and at work/school. • You should consult a doctor if your chemobrain condition persists for more than 6 to 9 months after your last treatment. • Stick to one task at a time, and avoid multitasking until you get better. • Make lists to help you keep track of what you are doing. • Exercise your brain with Sudoku, crossword puzzles, mah-jong, bingo, etc. • Stay healthy and get enough sleep every day.
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Getting back on your feet
I
f you need life hacks and tips to help you get a firm footing in life again, we hope you will find this chapter useful.
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Nerve problems Your normal nerve cells may be affected by cancer treatment, so you may experience tingling, numbness, weakness, cramps, burning feeling and even pain that come and go in your limbs. Usually, you first feel these sensations in your fingers and toes, and these sensations eventually move to your hands and feet, later to your arms and legs. If you experience these sensations, you may have a condition called peripheral neuropathy. • You should let your doctor know if you experience this condition. If you let it remain untreated, you may have problems with feeling sensations such as hot and cold as well as controlling your limbs to pick up and hold on to things, buttoning your clothes and even walking and balancing. Sometimes the damage to your nerves can become permanent, so it is best to seek treatment as early as possible. • Peripheral neuropathy can’t be cured but there are many ways to reduce the symptoms and still have a reasonably good quality of life, so don’t despair if you are diagnosed with it. A combination of medications, supplements and some lifestyle adjustments (such as wearing good shoes and gloves to protect your limbs) can help. In some cases, occupational therapy will also be useful.
Swallowing Survivors of cancers in the head or throat region may experience difficulties with swallowing. Food and liquids may become caught in the throat or end up going into the lungs instead (the latter can lead to repeated
cases of lung infection or pneumonia), there may be a feeling of tightness and even pain when swallowing and the patient may also experience dry mouth or reduced taste sensation. • You should let your doctor know if you experience such difficulties. He or she may refer you to more specialised treatments to help you control your swallowing reflexes better. If you let your problem remain untreated, you may have problems obtaining enough nutrients and fluids in order to stay healthy. • In the meantime, you can make your food easier to swallow by opting for soft or moist food, adding extra soup or gravy and taking smaller bites or sips.
Sleep problems If you have problems sleeping, try the following: • Wake up and go to sleep at the same time, even on weekends. • Avoid using electronics (TV, computer, tablets, cell phones) at least an hour before you go to bed. • Make your bedroom a comfortable place to sleep by keeping it dark, quiet and well-ventilated. • Relaxing pre-bedtime activities such as reading, meditating, taking a bath and listening to soothing music may also help. • Keep the bedroom cool with airconditioning if you experience night sweats. You can also keep a bottle of drinking water a cloth soaked in a bowl of water near your bed. • Avoid drinking caffeine at least 4 to 6 hours before bedtime.
Getting back on your feet
Getting back on your feet
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An inspiring true story
“I always thought that seeing a psychiatrist is a sign that you are gila,” she muses, “but I soon discovered how wrong that perception is.”
Facing life with hope & grace
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Facing life with
hope & grace
Kadulliah Ghazali is a cancer survivor. She was diagnosed with aggressive cervical cancer in 2001, and had to undergo a complete hysterectomy, in which both her ovaries and her entire womb were removed.
B
eing a cancer patient brought forth turbulent emotions in Kadulliah’s heart. “I have always been an independent person, however, so I naturally bottled everything inside instead of sharing my feelings with my loved ones,” she recalls. “I wondered again and again what I did to deserve this cancer. Why me? Did I do something wrong?” she reminisces. “And I was angry with my oncologist, with God.” When she was told that she was free of cancer, she also realized that she was not entirely cured. Her doctor explains that there is always a chance that the cancer will relapse.
TAKING THE WEIGHT OFF THE SHOULDERS Recognizing how her emotions were affecting her life and fearing that she would sink into depression,
Having someone to talk to lifted the weight off her shoulders as well as the heaviness in her heart. “Just having someone to talk to makes a big difference,” she says with a smile. “I normally find it awkward to talk to the people I know about my problems, so in my case, talking to a stranger is so much easier.” The psychiatrist helped Kadulliah see her circumstance with clearer perspective. Many people think that you will feel better simply by thinking positive thoughts, but Kadulliah and many other cancer survivors understand that things are never that simple. There will be days when they will feel negative emotions, and there is nothing wrong with this as it only shows that they are human. What is important is to keep these negative emotions from affecting them to the point that they give up altogether. “Talk to someone,” Kadulliah reiterates. “It doesn’t have to be someone we know; it can be a stranger, like a counsellor or a psychiatrist.” There is also support to be found at counselling hotlines and religious institutions as well as cancer survivor support groups. In this time and age, no cancer survivor has to be left all alone.
MOVING ON WITH COURAGE AND HOPE Kadulliah is a lecturer at Universiti Teknologi MARA (UiTM). Returning to work was an intimidating experience at
first, as she would doubt her abilities to catch up with her colleagues. Even today, more than 10 years later, she still sometimes wonders whether she is strong enough to work like she used to. “But I realize, ultimately, you just have to give your best to everything you do,” she says. “I will tell my colleagues: I can do it, but if I fall, just send me to the hospital!” she adds with a laugh. Since returning to work, she has been twice awarded the Award of Excellent Service by the university. Clearly, her philosophy and determination paid off! In the meantime, Kadulliah also keeps up with her medical check-ups. They are necessary for her healthcare team to monitor her health and detect signs of the cancer possibly coming back. These medical check-ups are constant reminders of her cancer, but she understands their importance. “One way I keep myself from thinking too much about the cancer possibly relapsing is to keep myself busy,” she says. In addition to her work and her loved ones, she also volunteers at MAKNA. Meeting and offering support to her fellow cancer survivors not only keeps her mind occupied, it also gives her a fulfilling sense of purpose. She remembers how she found a semblance of peace by having someone to confide in, so she now offers a shoulder to cry on and a listening ear to those who need the same kind of comfort. Cherish every second and make every moment count. That is Kadulliah’s philosophy as a cancer survivor. She does not know what tomorrow will bring, but come what may, she will live every day that she is blessed with, on her own terms.
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Facing life with hope & grace
Kadulliah’s healthcare team referred her to a psychiatrist.
Messages of Hope In late 2016, CCM Pharmaceuticals invited guests attending its Lavender Ribbon Campaign launch to leave inspirational messages to cancer patients and survivors. Here are some of these messages.
Let’s fight the battle together. You are not alone.
Lav e Cam nder R ib paig n lau bon nch
Here is the world. Beautiful and terrible things will happen. Don’t be afraid.
Be hopeful, be strong, be confident. Be positive, be brave and you will be victorious.
If you or your loved one needs support and advice, MAKNA is here to help.
MAKNA Cancer Helpline (toll free): 1-800-88-62562 (Monday to Friday; 9.00 am to 5.00 pm)
Email: cancerhelpline@makna.org.my Website: www.makna.org.my Support groups are available, please call to enquire.
Editorial material herein is provided for information only. Readers are cautioned not to use this information as a substitute for regular professional health care and consultation. Although great care has been taken in compiling and checking the information given in this publication, the publisher, authors, advisors and agents shall not be responsible or in any way liable for the continued currency of the information or for any errors, omissions or inaccuracies in this publication whether arising from negligence or otherwise howsoever, or for any consequences arising there from. The inclusion or exclusion of any product does not mean that the publisher advocates or rejects its use either generally or in any particular field or fields. Advertisements are subject to editorial acceptance and have no influence on editorial content or presentation. The publisher, authors, advisors and agents do not guarantee, directly or indirectly, the quality or efficacy of any product or service described in the advertisements or other material which is commercial in nature. Copyright: Š 2017 No portion of this publication may be reproduced in any language, stored in or introduced into a retrieval system, or transmitted, resold, redistributed, in any form or by any means electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise, without prior written permission of the publisher. MY-CCM-092