STAYING ALREAST OF THE SITUATION

Breast cancer is a plague that affects one in eight women globally, regardless of race, age or health condition. This month Kathlyn D’souza gets up close and personal with the loved ones of those affected

I AM terribly sorry for this, but I have to let you know that my mum is turning down the opportunity to have a chat with Malaysia Tatler about my breast cancer. I’m afraid she’s still traumatised by the whole experience,” Priya, a breast cancer survivor, told me after I had approached her two weeks prior to receiving this text message. Our team had touched based with the National Cancer Society Malaysia, the Breast Cancer Welfare Association and Beacon International Specialist Centre, and their teams had kindly assisted us in reaching out to various survivors. Unfortunately, while the survivors were kind enough to reciprocate the contact, their friends and families were not keen on telling us their stories. Those who had been acting as caretakers of the sufferers got the brunt of it all, more often than not, thus their reluctance to recall the trauma. “My mum still can’t get over it. She still has trouble looking at my scars,” Priya explained further. Some parents forbid their children from talking about their breast cancer, preferring to treat it like it never happened, understandably. Mercifully, we had managed to get two people to talk about their experiences being part of the whole ordeal, watching on and supporting, as their loved ones ploughed through the plague that is breast cancer. One gentleman, Mohammad Redza Zainal, is a devoted husband and caretaker of his wife, Fara Aida Farid, as she battles this disease. The other, Aliza Azani, practises the saying ‘best friends forever, through thick and thin’, as her closest friend Hiba Abdul Rahman stuck through treatments and survived. We also spoke to Dr Azura Rozila of Beacon International Specialist Centre on how to deal with spousal stress. In line with the Breast Cancer Awareness month, we strive to highlight and appreciate not only those who have survived or are fighting breast cancer, but those who have been with them every step of the way—as warriors themselves, not just as an after-thought.

How did you feel when you first found out that Hiba had breast cancer?

“My first reaction was of disbelief. I couldn’t believe that she of all people would be diagnosed with breast cancer, and at such a young age. As far as I knew, she had always been quite a healthy young lady. She took care of herself and ate well—she also did not have any unhealthy vices. The first thing that I thought to ask her was if she’s gotten a second (or even a third) opinion. I just couldn’t believe it. While on the phone, I was the one who broke down and cried, and she was the one who said it was going to be alright.”

What was it like, the process of accepting it?

“I was in disbelief for quite some time, but I was determined to support her as much as I can. And so, by watching her go through her treatments and dealing with the after-effects, I slowly accepted that it was real. It was happening. It was hard not to feel anger about the circumstances, but seeing her smile and be her ever-jolly self through it all made it somewhat easier to just accept it as it was. Her positive attitude was infectious, and I found myself shifting from questioning ‘Why?!’ to thinking ‘What can I do to help?’, and it became easy to just fall into the supporting role. Of course, it wasn’t all rainbows and butterflies, so when she had her down days, I did what I could to be present with her— emotionally and physically.”

What was the most gruelling moment or memory of this entire experience?

“I’m not very good with blood and seeing people in pain—the hardest bit for me was first seeing her chemo-port, and then seeing her wounds after surgery… I wished I could take some of the pain away.”

Where did you channel your stress to?

“Physical activity. It has always been my outlet, and I didn’t see any reason to change that. It’s important to also care for ourselves when we’re taking on the caretaker role. We’re no good to others if we’re no good to ourselves. Emotionally, I would talk to our other friends whom we call Care Bears—one of us is a doctor, thus we get our medical information from her.”

How did you maintain a strong exterior to keep her strong too?

“I’m a very soft-hearted person and after some time, I decided not to work very hard to keep a strong facade, she would’ve seen right through it and it would have just made matters worse. Instead, I encouraged her to talk about what was happening and I took an interest in everything that was happening in and around her life (not just the cancer, but also relationship, home life, etc). I think that’s a much better way to keep the person we’re caring for, going—by being with them in the moment. That way, they won’t feel as if they’re going through it alone. And the truth is, Hiba wasn’t going through it alone. She had me and all of us with her through it all.”

What changes did you make to your lifestyle?

“The biggest change I made in my life at the time was to stay over at the hospital with her on days that she needed to be admitted for treatment. We (the Care Bears) thought of it as sleepovers—she had friends over in the ward most of the time she was there, and we played some games when she was up to it. Other times we just kept her company. After that, the night’s volunteer ‘vigil’ will stay in the hospital with her through the night. Nowadays, we’re pickier with our surroundings whenever we go out; we try to go to places with healthier food choices and keep away from smokers as much as we can.”

Did you ever feel yourself changing throughout this ordeal?

“Let’s just say it made me appreciate the little things in life even more, and it also made me see the very real value of friendship, love and laughter. It allowed us to be more genuine with each other, and suffice to say, in our closest circle, material things have become somewhat immaterial.”

How has constantly being in the hospital environment changed your perception?

“Looking back, going to the hospital again and again was somewhat like a sign of hope to me. Every time I went to the hospital, she was one step closer to finishing her treatment. It was hard to see her becoming weaker and weaker with every passing cycle, but I believed there was a light at the end of the tunnel. If I had to do it over again, I wouldn’t change anything. I’d go on a thousand more hospital trips with her if I could, if it means seeing her get better.”

Advice for friends going through the same thing with their own loved ones?

“Be there for them. It’s their bodies and their journey, but they don’t have to feel alone through it all. It’s as simple as a text or a call, or getting the food they like when they’re feeling their weakest. Keep them company when they’re feeling low, and help them make sense of all the jargons and treatment options available out there because it can be too much to take in sometimes. Ultimately, spend time with them, the people that we love.”

Aliza and Hiba met through mutual friends in their teens, during an ice-skating outing. They could talk about anything and everything, getting along like a house on fire, and are best friends until today.

What was the first thing that crossed your mind when you found out about Fara’s breast cancer?

“There were a lot of questions. What would happen to her? What would happen to me? What would happen to my work, our finances, and so on and so forth. It was very hard for me to focus and accept that she had cancer. I knew about cancer, obviously, but not in-depth. I don’t know about emotions, sensitivities … so when I found out, we had discussed what to do, and about hospital issues. At the time, we were in a very bad spot financially. We didn’t have a lot of options. On top of that, as I did not understand the disease and the character of breast cancer victims, I became very defensive and was in denial. When she told me she was in pain, I had often asked her to ‘relax lah’, not knowing how to deal with it.”

What were initial trips to the hospital like?

“She came home from the hospital one time crying, she was so scared of what the doctor had just told her, and I was confounded. She had not wanted to go for chemotherapy, because it had seemed so daunting. I tried to convince her to go, and that was the source of our many fights. Out of rage, I remember telling her, ‘everybody dies, so just go to the hospital.’ But in the end, I listened to her, asked her what she wanted to do—whether there were other alternatives to consider, such as traditional herbal medicine. That went on for two years, where I let her do whatever she wanted. After many failures, I put my foot down and decided it was time for us to go to the hospital.”

How did you cope all this while?

“I browsed a lot of books and the Internet— not about treatments initially, but about the behaviour of cancer patients, so that I can learn how to cope better. I can’t tell her about treatments as I am not qualified. The only thing I knew was to give her moral and emotional support, plus protect her from things that could potentially hurt and influence her, especially from people around us. I didn’t want her to be frustrated and demoralised. I became her shield. I also think Fara is a fighter, taking it one day at a time—and that makes me strong. If my wife wasn’t fighting back, I would probably have given up earlier as well.”

Where do you channel your stress to?

“I read books on war! I bought about 10 books about them. Just to take my mind off and disconnect for a while. I read about these people who suffer (more than I do) and make it through, which makes me hopeful and gives me strength, strangely. Obviously, there are times when I feel down, especially where finances are concerned, but you have to work it out.”

Have you ever told her how frightened you are?

“Never. I always try to make plans for both of us, as if nothing is happening—we plan dates, we go to beaches like Cherating every week; get out from the crowd. As husbands, I feel like it is our duty to take our wives’ minds off the severity of the problem, and be their anchors. If I’m worried, everything will get worse. Even if it’s pipe dreams of having holiday homes, we talk about all these little things. Nothing should change in a relationship between a husband and his wife. Fara once told me that she didn’t want me to treat her like I would a sick person, and I tried my best.”

What has changed the most, in your life?

“My career has been put on hold for the past two years. When she first got cancer, my career was taking off, the momentum was very good. I had good stories, and whenever I pitched to the channels, it was always accepted and broadcasted. I had assignments everywhere. Not many people have that chance in the documentary industry here in Malaysia. But when she got the cancer, I had to put everything on hold as I wasn’t ready to lose my wife. I was ready to lose my job, but not my wife. If I lose my job, I can still write stories. But if I lose my wife, I don’t know what I’m going to do. I would be losing everything, as she has been my companion for a long time.”

Do you have any advice for husbands going through the same thing?

“If you want to run, what is the reason? If you’re running because she won’t have breasts, or that you do not want to be responsible, why is that? To me, she is what really should matter. We have so much fun being together that even the sex life doesn’t matter anymore. Also, get as much information about the cancer patient’s behaviour. Doctors will talk about treatments and such, but you’re the one who’s going to face your loved ones day in and day out.”

What is your advice for partners who have just found out about their loved ones’ diagnosis?

“It’s important that they listen to what’s going on, and how it’s affecting their wives or partners. They need to give themselves time to process, as the information is just too heavy and can be a bit too much. They’re there to play a supporting role, which is so important for the patient. It is also important that you do not rely on one source. Multiple researches can help in formulating a decision plan, which is a big process. And as far as partners and spouses are concerned, listening and facilitating is a huge task. They will be taking on more roles as well, not just to take care of their partners physically as they undergo treatments, but they also have to take over household duties, parenting, keeping everybody together—they are very much involved. The woman’s diagnosis is the partner’s diagnosis as well. From the beginning to the end, the partners are very much involved. They go through the same feelings that the woman does—the shock, the unpreparedness, difficulty in coping, changes in how you spend your days worrying, struggling, adapting. It’s not an illness that just affects one person.”

What are some of the backlashes that you’ve received from the partners?

“By the time they come to me they’ve very much already been pre-empted by other doctors. Cancer is a disease where you see a lot of doctors as you navigate through the health system. Some cope better and some don’t at all. They’re never angry, they’re always in denial because they’ve done everything properly—eating healthy and such, but they’re not sure why this happened. There are some partners who are completely quiet and withdrawn, out of shock, stunned and unable to process the information. Some of them don’t even want to go into the clinic because they cannot cope. It’s just such a big thing, trying to discuss what’s going on. It’s important that patients have a second pair of ears though.”

What do you recommend loved ones do to cope with the stress better?

“We just have to let them know that it’s acknowledged, that it’s okay, and they DON’T have to be strong all the time. We can help them acknowledge that whatever they’re feeling is okay. There’s the worry that comes with the uncertainty, not knowing if they’ll get better. Of course, we do hope for the best and the hope that it won’t come back. Many people have their own way and time for coping, but talking to someone really helps—they can talk to their friends, family or people over the Internet, where they can remain anonymous. In a way, this is an area that is not well-researched or discussed, but there are evidences that husbands or partners find coping difficult. They’re not there as the background, but part of the process. It’s a huge change for them as well. They don’t voice it out, because they think the priority is not on them, but rather on the person who has the illness. It does, however, also affect them on all levels.”

What’s the important thing for loved ones to know when it comes time to accepting this disease?

“Think about how to make it work. There will come a time when you need to change, given the unpredictable nature of the situation. Make plans, which involves getting information, exploring options and seek to understand the disease. You need to have faith in the treatment of breast cancer. Things have changed, outcomes are better, treatments do work. You need to believe in that and support them to get through it. It will take a bit of emotional strength because there is no guarantee that everything is going to be hunky dory, but if you keep moving, you know you’re going to see results. You also need to show that you care and that you love them. There will be changes in the patient’s body image and they will suffer from confidence and self-esteem problems. There will be problems in intimacy of course, but you need to adapt, in time. At the end of the day, you also need to take care of yourself. It’s okay if you have a certain way of coping to these reactive emotions such as taking time to see your friends or shut off, to keep your sanity. And it’s alright. People have their own caves, and they need to be somewhere to recharge. Life works in a miraculous way, and I believe it’s a learning opportunity—it teaches patience, strength, spirituality, selflessness… and of course, don’t give up.”

The effervescent and bubbly Dr Azura Rozila Ahmad indulged us in an eye-opening chat regarding spousal involvement and the stress that comes with diagnostics