- Have you ever wondered what comes after a breast cancer diagnosis?
- How do you move past the pain, guilt and anger that comes along with it?
- Is cancer really a death sentence as people paint it to be.
- Read on to learn about the inspiring story of two women who fought and survived that pain that comes with it.
Can we ever be truly prepared for our biggest fears? Have the confidence that our courage will filter through during days when life feels bleakest? Can we trust ourselves to be bold enough to defy the odds and wholeheartedly accept our trials or rage against life for its bitter treatment? How long would it take for you to come to terms with cancerous cells that are slowly ravishing the good cells in you?
For many, a cancer diagnosis can only spell an impending death waiting to happen. It is a form of loneliness and an ache that no one can ever truly understand unless they have walked the same path. There is only so much that Google can do to help answer the lingering questions. Why me? I thought I was healthy? Did I not take care of myself more?
As one ponders upon life and its purpose, you also have to handle the crippling anxiety that comes from waiting for surgery days, the treatment, the numerous trips to the doctors and the most unforgivable of them all; relapse. This begs the question, what is life after a cancer diagnosis? Where do you even begin?
As we celebrate breast cancer month, we were given the honour of interviewing two amazing women who have been through hell and were not afraid to bare it all. They showed their vulnerability and educated us on why cancer is more than just pink bows and flags. More than what the media broadcasts it to be and certainly not the death sentence either that is portrayed in most movies. It is an experience with a depth most would struggle to perceive, so journey with us as we unravel the pains and joys of these two phenomenal survivors.
When did you first discover you had cancer and what was your initial reaction?
Noorunn: I was diagnosed with cancer in October 2016. I had just gone for a checkup because I had found a lump, and it was growing considerably; my breast was also changing its shape, and true enough, the lump found was malignant. I got the diagnosis in October and surgery in December.
As for the initial response, you know, hearing about the big ‘C’ came as a shock to me. I took care of my health. I even organised health programmes at my workplace; I did many things, including yoga, my BMI was normal, diet- everything, so when I heard, my first questions were, “How and why me?” Overcoming the “why me” was the biggest challenge.
Citra: I discovered I had breast cancer in October 2016 as well. I had been breastfeeding and then noticed the nipple on one side of the breast was different. I didn’t feel any pain, but I raised my concerns to my husband, who also agreed to get checked. So I went for the checkup, and the attending doctor just looked at my breasts and gave me a letter to see a specialist. That same day, the specialist called to ask if I could get checked on the same day, so I went and had the cancer screening.
My results came out on the 19th of December and confirmed I had breast cancer, and at that moment, I felt I was going to die soon. I was scared and confused; like Noorunn, I also took care of what I ate; I didn’t even consume meat and was very health conscious. My thoughts were, “Wow, cancer is a killer disease with no cure.”
At what stage was cancer discovered?
Citra: They discovered mine in its early stages, but it had progressed to the second stage during chemotherapy. Maybe because of stress. At that time, my knowledge about cancer was limited. All I knew was that it was a death sentence, and I didn’t want to die.
Noorunn: When I went for the biopsy, it was in its early stage- the DCIS meaning the cells have become cancerous but are in a non-invasive stage, so they can pretty much be referred to as stage zero. However, there was a waiting period between the biopsy and the surgery, and when I finally had surgery, it has also progressed to Stage Two A.
All through my twenties, I always went for regular checkups because my breasts always had lumps, but they were always benign (non-cancerous). I was always aware, and I guess that helped significantly in discovering cancer in its early stages. So awareness is essential; you should always check for any abnormalities because I am the first in my family to get breast cancer. I could have ignored it because my family history doesn’t have cancer, but one should never take those checkups for granted. They could be your saving grace.
Did you ever get over the initial feelings that came after discovering you had cancer?
Citra: Unlike Noorunn, I did not have to wait long until I had my surgery. I got my results on the 19th, and then that same day, the doctor called later to ask if I could get admitted today and have surgery the next day, and I just went along with it. So basically, I didn’t have time to process everything, but then it hit me when I looked at my sweet little daughter, who was very small then and couldn’t bear the thought that there was a high possibility I might not make it and leave her. I couldn’t tell her anything, so I just put up a front every time she was around and smiled. My thoughts were, “If I am gone, who will look after my daughter?” I was also scared of leaving my husband and my friends behind.
But she was very curious and was always asking the doctor questions. She asked me, “Mummy, why are you going to the hospital?” And I just told her that mama is getting surgery to take away this breast. At that time, she liked sleeping whilst holding my nipple, and I told her that she couldn’t do that anymore because “this one I’m going to throw away.” She asked why and that’s when I told her I had cancer, she didn’t understand then, but she followed me everywhere to all my checkups when I visited the doctor, always asking, always curious.
Noorunn: I always went for checkups, and the results were always negative, but when it came out positive this time around, I was shocked. No one is ever mentally prepared for that. The stress and shock were further heightened by the extended waiting period between the diagnosis and the surgery.
I didn’t tell anyone. I couldn’t. So I just kept everything to myself and suffered under the weight of it all. Thinking about it now, the amount of stress that comes from waiting anxiously at home while you know that cancer is slowly eating you out is intense.
How did you inform your loved ones, and how did they react?
Citra: It was a terrifying period. Before I started my treatment, I asked the doctor if I could go back to Indonesia to see my parents. It was only for three days. It didn’t matter how short the stay was then; I just wanted to tell my parents. Of course, my parents were surprised because my last visit had been less than a month before that, so they were suspicious and concerned. My father asked me if everything was well, but I couldn’t bring myself to tell them. I just told them I missed you, mama, papa; I just wanted to see you.
Lots of overwhelming thoughts. I was scared, it was major surgery, and I also wasn’t even sure if I was going to have surgery or not. I didn’t even know if I would survive the surgery, anything could go wrong, and I was scared. I finally told them after the surgery about all of this.
As for everyone else, I told my daughter that if you go to church with daddy, don’t tell anyone that mummy is in the hospital. She did exactly that, and that’s how my churchmates knew. When they visited, I was surprised because I said to myself, If I am going to die, just let me die alone (laughs). I later realised the importance of having friends and prayer when going through something as devastating as that.
Noorunn: Most people keep it to themselves when they go through this, but I was the complete opposite of Citra. I told as many people as possible because I am a people person. Most of my family is not here in Kuala Lumpur, so when I told my mum and my friends, they came to see me. My friends prayed for me. Generally, the love and support I got from them were just amazing, and I needed that.
Did you get the support you needed from family and friends?
Noorunn: Yes, definitely. I don’t think I could have gone through that difficult period on my own. My sister hates cooking with a passion, but she came every day and cooked during my surgery. She is a teacher, so she came after school to my house and ensured that I had proper meals and everything I needed. My mother, who was 70 years old, didn’t like leaving her house, but she also came and stayed with me. She went out of her comfort zone and came and gave me company when I needed it the most.
How important is having a solid support system during this period?
Citra: Very important! You need support from everyone to pull through.
Noorunn: Now we understand why it is called a ‘support group.’ We didn’t have any support groups during this period which was unfortunate because you need to be among people who have suffered in similar ways to remind you that you are not alone. These family-like communities understand exactly what you are going through and how you feel, which is very important.
Citra: I only learnt about the support groups when I was going through chemotherapy. Before that, I used to feel alone, thinking I was the only one going through this, but it’s true what Noorunn said, you will meet people who will understand you and motivate you to fight on.
How did you find out about the support groups?
Citra: I got fliers from National Cancer and joined their sessions. From then on, I could open my mind to the various perspectives, struggles and similarities between us all. I stopped thinking that cancer was a death sentence as I saw people who had survived it. I would hear, “This one has been a survivor for more than twenty years now,” and that on its own was mindblowing. I started to hope and dream again.
Noorunn: After my surgery, I was home alone, and it had been a while since I had been alone, so I thought to myself, “This cannot be me,” so I went online and searched for breast cancer support groups. I found several workshops and foundations and got in touch with the organisers. I attended the workshop, and that’s when I found out about the activities and everything.
So are you still a part of those support groups?
Noorunn: I used to be quite active before covid-19, but afterwards, everything got quiet. They continued with the breast cancer funding activities, but they stopped conducting fun activities like hiking, cooking, and celebrations.
What advice would you give someone without a strong support system?
Noorunn: You cannot be alone. You might not have a constant figure or strong system, but you have to be with someone you are comfortable around. Someone who will motivate and encourage you when the going gets hard. You don’t have to suffer or carry the burden alone. Get needed treatment first, and whatever help is needed. Most hospitals have counselling units to help cope during this difficult time.
There are a total of about five hundred houses in my housing area, and I recently learned of the passing of a neighbour who also had breast cancer. That made me realise that I should share my story, so we have sessions after prayers. I have sort of created a small support group in my neighbourhood, it is not the same as a good support group, but with this, I know that I am playing a role and that my story can help motivate and encourage someone.
What differentiates a support group from the support you would get from family?
Citra: There is a big difference, and it primarily circles being with people who have been where you are and understand what you are going through. I got a lot of advice and motivation from meeting survivors who had been through it all. I felt more comfortable around them because we had a common ground. My family was supportive and understanding to a certain degree, but it could never compare to those who had suffered from it.
For example, with family, at times, you had to put up a front and pretend to be optimistic on days when you weren’t feeling like it. I had to do it for them, but with support groups, because they understood, I could be as honest as I wanted to be about my emotions.
Noorunn: For myself, it’s different as well. With family support, they want to tell you that everything is okay, things will get better, and the moment you feel a bit down, they get uncomfortable. They will get worried and just want to see you feeling more upbeat and lively. But with a support group, they know and understand.
Did you make any changes to your lifestyle after your diagnosis?
Citra: After finishing my treatment, I got very active in my support groups. I also volunteered at hospitals to share my experience and motivate other patients. Even during CMCO, I was still quite active; we would have online sessions and even Zumba classes!
Would you say this experience has changed your life?
Noorunn: This journey has taught me how to keep my faith. I have learnt how to maintain my relationship with God during these difficult times. My priorities have changed because I used to be a workaholic; I would go to work before sunrise and come back after sunset. I stopped working because it was very stressful, and stress is not good for your health, so I had to reframe my life and prioritise what was truly important. I thank God for giving me a second chance to live and make my life more meaningful.
Citra: For me, I learnt to always have a positive outlook towards life. I had to remind myself that I survived and should live like a true survivor.
What was your biggest obstacle to overcome?
Noorunn: The biggest challenge was the waiting period because, at that time, I did not have a support group, and my family was not yet here either. I told them I was okay, but I was just home thinking and thinking. So now that I think about it, that is the most critical time that any newly diagnosed cancer patient will truly appreciate your support.
The other challenge is that when you tell your friends, there will always be a very ‘smart’ friend who will advise you to eat this, drink this, do this and will even tell you of people who drank this and their cancer disappeared, you should not listen to such people (laughs). Listen to your doctor.
Citra: During my radiotherapy and chemotherapy days, I was overwhelmed with fear as I often wondered If I would be able to go through this treatment. I also got a lot of unsolicited advice, but I ignored it and only listened to my doctor. And the funny thing is the people who told me to follow this and follow that didn’t even have cancer, so how can I listen to you?
I also lost a close friend who refused to go through with the treatment, so they passed away. That made me sad because I wanted her to get better.
Noorunn: I also had a colleague diagnosed around the same time as me, but when I went for surgery, she \ refused treatment because some ladies are not ready to part with something they view as part of their femininity. She didn’t do anything and just hoped it would go away, so it can be scary sometimes. My goal is to share and spread awareness on cancer, make people know that they can get treatment early and that they shouldn’t take this for granted.
How often does it happen for people to refuse treatment?
Noorunn: I am not sure how common it is. Probably in rural setups, it is most likely to be prevalent due to lack of awareness.
Citra: Yes, most people don’t go to hospitals because of chemotherapy’s stigma, so that they will opt for other non-scientific traditional methods. However, usually, when they finally come to the hospital, it is already too late. It is unfortunate.
Were you ever tempted not to go through with treatment?
Noorunn: No, you must go for treatment. No doubts about that one. The minute I got diagnosed, I entrusted the doctor with my life, asked for the surgery dates and got the treatment out of the way. You don’t want to prolong that. Thank God we had that knowledge and awareness to get treatment first.
Citra: You know, when I got diagnosed, I thought of Angelina Jolie. Given her family history, she didn’t have cancer, but she took the necessary steps to ensure she wouldn’t go through it. So when the doctor came and told me about mastectomy and all that, I just said sure, whatever you want and the rest we give it to the Lord.
Noorunn: Without really sugarcoating what had to be done, when I went there, I thought they would take a small portion of my breast as I felt it was an asset, you know, as a woman. But he said, “This breast has to go everything has to go.” So I told him I wanted to think about it, but he insisted, saying, “What do you want to think about? You want to change your mind?” I told him no, I just wanted a second opinion and only let me go after I promised to come back (laughs.)
Citra: I only wanted the nipple gone too, but the doctor told me about reconstruction, so after one year, he called and asked me to get the nipple reconstruction, which I got! So now I have both the breast and the nipple, but they are fake.
Noorunn: Because of this, we struggle with self-confidence.
Citra: Indeed. For myself, I keep thinking to myself that this one is original and the other one fake. I can’t wrap my head around it and feel that I am now heavily flawed. Sometimes I feel less confident. I haven’t overcome it, though there are days when I almost forget, for example, when I am covered up (wearing clothes) or when I visit some support groups. I have met some women who were so proud, and their confidence rubs onto you, and you feel unstoppable. But back in the bathroom, when I look at my reflection in the mirror, I just can’t look at myself anymore and want to cover up everything. As a result, even when I am at home, I don’t allow myself to be fully naked. At times I blame myself for getting cancer, but I’ve been working towards forgiving and loving myself more.
What are some misconceptions you’ve heard about breast cancer?
Noorunn: Not breast cancer per se, but just cancer in general and the biggest one is that once you get cancer, you’re dying. The other one is that once you get breast cancer, your only option is to remove your breast altogether, but now there are so many treatments and many options. If it is detected early, you can also save your breast, but even if you don’t, you can also go for reconstruction, there are so many options, and you can live happily ever after!
Another misconception is that you will become less of a woman if you get breast cancer. Many patients refuse treatment once they hear they might lose their breasts, but that is not true!
How did you motivate yourself to go through every day? How would you describe your journey?
Noorunn: It’s a wake-up call for me. I’m blessed to get a second chance in life. Appreciate it and make it meaningful for self as well as help others.
Citra: This journey has taught me a lot. There are many times when I still struggle to accept myself, but I talk to my God during those times; I treat him like my father and tell him everything.
What advice would you give to those having a tough time in their battle with breast cancer?
Noorunn: Get help. You don’t have to suffer alone. There’s a whole community of survivors who are strong, living a happy and fun life!
Citra: I volunteer a lot at local hospitals and sometimes the doctor will call me and ask me to talk to a newly diagnosed patient. I will call, and then I can share my experiences with them, let them know and understand that they are not alone. Sometimes they ask for advice on the next step, and I always tell them to trust in themselves and believe that the doctor is there to help them get better. Don’t listen to other people who don’t understand your cancer or the treatment procedure; follow the doctor’s advice.
So if you find yourself feeling alone and in seek of a company that will understand you, talk to your doctor, and they will direct you towards communities who will welcome you with open hands.
What advice would you give to the loved ones of one battling breast cancer?
Noorunn: Continuous support from loved ones during this difficult time is extremely crucial. It brings us much closer like never before!
Citra: Think about yourself, your physical and mental wellbeing. Get connected with support groups, make healthy decisions and live long! That’s the goal.
We understand that dealing with cancer can be devastating psychologically. Were there times you felt it had strongly impacted your relationships? If so, how did you handle it?
Noorunn: I am blessed to have the support of family and good friends. True friends stay, and others ‘disappear’ from your life! During this time, you will know those who are truly important in your life.
Is there anything that you wished your family would understand but didn’t have the chance to say then?
Noorunn: Thank you and love you always. My priority now is family first!
Citra: There were times when I wished I could tell them to treat me like a normal person and not a sick patient. I am still the same Citra despite the current situation I am facing.
You are more than your current condition.
Sometimes, it can be a near-impossible feat to search for the light at the end of the tunnel. When a sickness of this calibre surrounds you, you might feel all hope is lost, and the burden of it all might weigh down heavily on you. You are here, and we are grateful you can read this and should you long for a friend, one who will understand the depths of your sorrows and more, feel free to contact the number below. Just like Noorunn and Citra, who overcame their most harrowing trials, we believe in you! Now, how about we get you connected to:
Breast Cancer Welfare Association
Tel 03-7954 0133
Email info @breastcancer.org.my
Tel 03-9133 3936
Email info @hospismalaysia.org
Breast Cancer Foundation
Tel +60 3 7960 0366