Breast Cancer Awareness Month Feature
Text by Joanna Lee
1 in 20 Malaysian women are at risk of developing breast cancer in their lifetime, and is one of the most common life-threatening diseases a woman can go through. Although the majority of breast cancers that occur in women have no family history of breast cancer, a woman’s risk of getting it doubles if she does have a first-degree relative who has been diagnosed. Featured for Breast Cancer Awareness month this year is travel entrepreneur Nirmala Narayanan from Kuala Lumpur. She is an age-defying (50 years old but looks like she’s in her late 30s!) woman, a sister, a mother of two and a survivor of 7 years. Nirmala had her encounter with breast cancer back in 2009, and it was an experience that she’d once seen before with different eyes.
How did you first find out that you had breast cancer?
I have a family history with breast cancer – it started with my mum. We lost our mum to breast cancer. So since then we’ve always been going for mammograms diligently every year. So, end of 2008 in December, I went to get a mammogram – and it was all fine, everything was clear. Then in March or April 2009, I found a hardening in my left nipple. At first I didn’t think too much about it because after I had my second daughter in 1999, she did not breastfeed very often – this led to my breasts becoming engorged, so I had to go for surgery to remove the hardened milk ducts. I thought this hardening was just a repeat of that occurrence, but it was getting bigger. I never, for the life of me, thought that it was cancerous. Prompted by my sister, I went in July for a mammogram. The doctor couldn’t find anything. They could feel it, see it – but not find it. So they suggested me to go for an ultrasound instead, which I did. This time the doctor could see the lump in the ultrasound, and told me to go for a biopsy. I went to the hospital, did the biopsy, and then two weeks later, I was called to go to the hospital with my husband. I was still happy then, I still never thought that it could be [cancer]. Then I went, and they told me that I had breast cancer.
How did you react upon being diagnosed?
That was one thing, you see. My appointment was at 2pm, the doctor came in at 2.30pm. She just came in, threw her handbag to the side and just went “Oh, confirmed yeah, you’ve got breast cancer!” and I was like…it was like she was just saying “Hey you’re going on a holiday!” She just said it like that! Everything just went blank. It was just shocking, just me standing there with my husband, just shocked – the way it was broken to me, I couldn’t register anything.
What were your first steps post-diagnosis?
My doctor took me to the computer, and she said that we’d be doing a mastectomy. Doing a reconstruction right away. Now everything was still in my head, I knew what she was telling me – but I was just so…blank. She said that I could get a second opinion, so I went to another doctor. This other doctor relieved me so much, telling me not to worry – and that it wasn’t as serious as I feared. She explained my tumour was 5 centimeters – stage 2, that we could shrink it first, and that we would only have to do a lumpectomy. I was still young; I didn’t need to remove my whole breast. I was then referred to an oncologist, who was super – he didn’t even introduce himself with his doctors’ title… He assured me that it wasn’t a life sentence, and that I didn’t have to worry so much; we’d just do this, and that. This all happened on a Monday. Tuesday I went for a bone scan, to make sure it didn’t go to my bones. Wednesday I went for a CT scan, and then Friday I started chemotherapy already.
How did you break the news to your family members?
I first told my sister. My sister called to find out what were my results, and my two daughters were in the car with her at the time. We didn’t tell my youngest for a while – when she asked why I was going to the Cancer clinic, my sister just wouldn’t mention much. Then we all came home and I told them, my sister called my brothers and told them. We called my father and told him to come over to my house – he came and we told him – and he was going for a second round, first with my mom… My husband was in a daze, and didn’t say anything. He was in shock. I was in shock. My brothers… Everyone was there.
What were your main concerns after being diagnosed? Were you afraid of the coming procedures?
My daughters. That was the main thing [pauses] – because now they have a higher chance of getting it. So my main worry was about them. I didn’t think about the treatment at all – I was just worried about them, and how I was going to be around for them. The Treatment, no. Yes, initially I was worried, because the doctor said, you know, us being women and all – we’re always worried about our bodies. Even though they’re not removing the whole breast, they’re still removing a part of it. The scars will be there. It’ll affect your self confidence. That did happen, but that was very secondary.
That’s completely understandable, being a mother and all. Technical procedures have less uncertainty and the unknown after all. Tell me about your experience with chemotherapy.
I went for six cycles. Every cycle three weeks in between, so one treatment every three weeks. The first day I went, I won’t say it was horrible… When I went for chemo it was fine; it was after. When I came back home, my body was just so out of it. I couldn’t drink water, I felt very tired. There was nausea. I couldn’t throw up, just feeling horrible. Then, two days later my hair started falling out. I’d get up in the morning and my bed would just be covered with my hair. A few days later my brother came and brought his shaving blade and shaved me completely bald. To make it easier, so I wouldn’t have to see it fall. That’s pretty depressing – to see your hair fall. Then I went for chemo again and it was okay, it was just post-treatment, I would come home and be feeling so dead. Very weak, because your good cells are being killed along with the bad cells during treatment. So it was very tiring. Most of the time I’d just be lying down, too tired to even get up. Actually I would say the cancer doesn’t do anything to you. It’s the treatment. The chemo. Chemo was horrible. It was killing. After the 5th treatment, I was just too weak that they had to postpone treatment for a few days. That was the worst part. My mouth was like all “burnt”, I couldn’t drink water, I couldn’t eat anything… Fingers and nails all became black – the neck, everything. I had a very strong dose of chemo, because the doctors wanted to shrink the tumour, so I was given a very strong dose. It just darkened everything. No appetite. It was really bad.
What happened after you completed chemotherapy?
I finished chemo in December, and I went for my surgery in January 2010. The lumpectomy, to remove the lump. After that I had to walk around for ten days with this tube stuck in my hand to drain the fluids. I put it in my small handbag, so people couldn’t see that there was a tube draining the water and everything. I had that, and in February I did radiation. Every day. Just a few minutes a day. You don’t feel it but it burns any remnants of the tumour that was there. I was extremely, extremely weak and tired. Everything was completely gone. Hair, eyebrows, eyelashes…everything. Even now I don’t have my full eyebrows. So… I had to start again.
What was your recovery process like?
For the first 5 years, I had to go every 6 months for follow-up checkups. It was slow, I didn’t have any problem recovering; it just took time. I took my time. I didn’t want to rush for anything. I didn’t rush to get back to work. I had a good maid. She ran my home for me. I had enough to rest and recover. Of course the girls will do what little they can. I must say I was really pampered and taken care of well. Like I said we had a really good maid. She came two weeks before I went for my surgery. So she used to mix all these Indonesian concoctions with herbs, daun sirih, kunyit hidup… She used to boil it and make me drink it. So every time when I came back from chemo – few days later she would make juices and things. She really took care of me in the native way she did. I also had herbal medication, like mushroom things that my husband used to help me buy. I took them before chemo to help build my immune system. Of course, cut down on meat, no sugar because cancer cells survive on sugar. Just fruit juices, vegetables, fish… It was a strict diet. There weren’t complementary medicine. Just anti-nausea during chemo and such.
How was your family like during this battle?
I had a big support system. My younger brother came with me for my bone scan, my first day of chemo my sister and brother-in-law came and stayed with me the whole day. My sister was my pillar. She was really – she helped so, so much. She did so much. Because my husband couldn’t take leave as he was starting a new job at the time, my sister used to fix her classes. She lectures. She used to fix her classes around my chemo dates. Whenever it was my chemo day she wouldn’t have class and would just come with me the whole day. She did a lot. Took care of my girls and stepping in doing stuff for them, for me… The maid did a lot too. She insisted me to take my juices; she’d come over and go “m’am, minum.” I had good support. These girls were small at the time, 13 years old and 10… Not very small but still I couldn’t let on very much.
It’s wonderful to hear how you had such an amazing support system…
It’s very important. You know, when I went for chemo, there was this one patient – one lady, I felt so sad for her because she was coming for chemo and no one in her family knew she was going through it. Only her husband. Children, mum, nobody else knew. And I thought that was so sad because you need that support, you cannot do it by yourself. At times you’ll be so down, especially when you feel like you can’t do it anymore and you just want to give up. I had very good support. I had fantastic in-laws who were there for me. Really, I had the best support. I can’t complain. I was very pampered when I was sick. They pampered but they knew when to be pushy, they really took care of me.
Did you ever feel like going into recluse? Just pulling away from everyone else and closing off?
No. We had gone through this before with my mum, so we knew what to expect. I didn’t expect the horrible cancer treatment. The nausea, the way your body felt. Sometimes I used to feel like giving up, like I can’t take this anymore. Then my family would come and cheer me up, put music on, or we’d watch comedies and talk… They always pulled me back, encouraged me… I didn’t go through it alone. My husband is very quiet – but he would have people say “go get this for your wife” and he would go and get it for me and then ask me to take it. He used to do that. At one time it got quite overwhelming. Everyone has your best interests at heart. Some people will say “take this”, some will say “take that”, but you cannot take everything. In fact my doctor predicted this – and told me not to take everything, just take what I was comfortable with. Everyone is different. Everyone’s bodies are different. I just had to cut down at one point. Some people were upset, but you know when you’re going through that you don’t want to please everyone, you want to please yourself. It’s your body.
Some people can have massive support from others, but they can still feel rather beaten down by themselves. What did you do for self-cope?
Prayer. I think when you’re faced with this type of situation. You’ll always turn to God, right? I used to pray a lot with my sister… A lot of prayers… In fact after my radiation treatment, my husband took me to India, to a sort of pilgrimage to go and thank God. Twice actually, two different places. We turned to God a lot. It calmed me down; I’d talk to my mum and say “I know what you went through”. Until and unless you’re going through it, you wouldn’t know what it is like. After that, after all my treatments, I joined this cancer survivors’ society called the Pink Unity. So every one of them is a survivor, so they know what you’ve gone through. They know what it’s like with chemo, the uncertainties, the fears… Everyone can relate to each other, it was so good. We even went for a retreat; everyone was enjoying themselves – all the ladies were enjoying life.
Do you think this experience has made any impact in your life?
I used to get worked up very often. Angry, stressed out with work and all. Now, no. Now I feel especially with my age, I rather do things that make me happy. Do as much as I can, I try not to get stressed or angry. I take things a lot easier now. When something is not right, I just keep quiet and just mellow out.
You realize at one point that outbursts are just not worth it
Yeah it’s not. At one point you realize you can’t always stress out about so many things. Just enjoy life every day.
What changes have you made in your life? Perhaps lifestyle changes like your diet and so on.
Food-wise I’m quite careful but I must be honest. Now I will eat. Because I realized – well, during recovery you have to look after what you eat. But now after 7 years, my personal view – is just moderation. Don’t go overboard. I don’t take sugar. I only take sugar with coffee (condensed milk). My daughters always get on my case because I make my coffee sweet. That’s the only sweet I take every day. The girls are still very careful with what I eat. I love asam, sour and dried stuff. If I go out to buy, they’ll say “ma, no, no.” I’d say I want to eat at least one or two a day or something like that – I take them moderately. Even meat. During treatment, no red meat, no mutton. I take everything now, but not excessively. The fear is still there. One thing that never leaves is the fear. If anything hurts now anywhere, I feel like it’s come back. If I have headache… I think why, has it gone there? I think ‘has it spread’, has it gone here, has it gone there? I always think of that, and you can’t help it.
I like how you talk about eating moderately instead of restricting yourself, some people do that.
Yeah, because if I’m going to restrict myself, “don’t take this, don’t take that” – what am I prolonging my life for? If I cannot enjoy these little things. Food. I love spicy food, I love to eat seafood. Mutton. I cannot do vegetarian. I am a hopeless vegetarian! [laughs] I love ice cream, I love chocolates. But I know my limit. Just take one or two, and that’s it. Don’t go overboard. Because I know the consequences of going overboard. And I’ve got two police officers on duty to keep an eye on me [gestures to daughters]. If I buy asam, I have to go when they’re not around. Then I show them ‘hah, look I bought’. If they see me going into the asam shop, they’ll drag me out. My daughters are more careful than I am! Especially my eldest! You see, I knew some women who restricted themselves after cancer. Became full vegetarians, they go into yoga and organic food…they do these exercises, don’t eat this, don’t eat that… very strict. And just 2 years later, the cancer has spread everywhere. And I know a few of them who have…passed on after I knew them. After them being so careful. That’s why I don’t bother being so restrictive with my food. These ladies were so strict. Exercise, yoga, only expensive organic food, vegetables, no meat, this vitamin, that vitamin. But two years down the road the cancer has spread to their kidneys and lungs, and after a couple of years they’re gone. If people ask me if I am careful, I say no.
Just to wrap things up and top off this month of awareness, do you have any nuggets of wisdom to offer those who are currently battling this disease, those who have recovered, or the third party?
To those who are going through it now – just always try to be happy. Don’t get stressed, that helps a lot. Caregivers, I would say take your time. Sometimes the patient doesn’t know what they’re going through, they feel fed up and helpless, so the caregiver has to be patient and be with them. For those girls, I always say go and check, but personally from my experience, I would say go for an ultrasound. Like I said, with my lump I had to go for an ultrasound to detect. It’s less painful also anyway. If you’re lucky enough to get over it, enjoy life. Don’t think about ‘oh I can’t do this or I shouldn’t do this’. Of course do all within your boundaries but keep yourself happy.