Love & Life After Cancer: Hiba's Journey Through Breast Cancer & Beyond

By: Deean Yeoh

  

As many of our followers may know, Breast Cancer Awareness Month is an incredible important time for Amour Caché. Each year, we seek to provide a platform to the voices of survivors in and about our community, spotlighting their journeys, advocacies, and commitment to education on early detection.

This year, we're highlighting one of our models and dear friends, Hiba. In this article, Hiba discusses everything from her diagnosis, to finding the right support system, to the important intricacies that women within racial, cultural, social, and religious intersections face in the hindrance and advancements of early detection education. She also touches on important topics like self-advocacy during the cancer treatment process and love after cancer, a topic near and dear to her heart. Without further ado, here's Hiba.

 

D: Hiba, here at Amour Caché, we’ve had the opportunity to know you for about a year now. When we were first connected through Instagram DMs, we instantly fell in love with the candor on your page and literally felt your personality through the screen. For those who don’t know you, give us a lil’ introduction of yourself?

  

H: Hello! My name is Hiba, but you can call me Baba. I'm currently 33 years old, with an exciting 34th birthday just around the corner in January (yay!), living in Malaysia. I take immense pride in being a breast cancer survivor and advocate.

  

Hiba pictured wearing Amour Caché’s Cristal Tiger Leavers Lace Wireless Pocketed Bra au naturale, without a prosthesis

  

My life's primary mission revolves around spreading joy and making people smile. I accomplish this through various avenues be it through my advocacy work, my love for baking (after all, who can resist the aroma of freshly baked goodies?), or my contributions to the world of events.

  

For those who are acquainted with me, it's no secret that I'm an ardent fan of Harry Potter, Pokemon, and Studio Ghibli films. However, for those who truly know me inside out, will reveal that I am secretly a dedicated gamer, and someone who has practically memorized the entire script of Friends.

  

"I made it crystal clear to [my doctors] that I wanted no sugarcoating" 

 

D: Girl, that makes the two of us! You were diagnosed with breast cancer at a relatively young age. Recent data shows that breast cancer is now the most common cancer found amongst women under 39. Tell us about your diagnosis revelation. How did you know to go to an oncologist? What was your experience like with medical professionals? Take us through your methods of coping at the time.

 

H: I received my stage 2 breast cancer diagnosis at the tender age of 25, and it came as a shock, especially considering I had no family history and didn't know anyone my age who had experienced breast cancer. The initial diagnosis was made by a breast surgeon since she was the one who performed my initial ultrasound and biopsy, which confirmed my condition. Following that, I was referred to an oncologist for treatment. It's important to note that, at least in Malaysia, to consult with an oncologist one must first be diagnosed. Before the diagnosis, patients typically interact with the surgeon, or doctor, responsible for confirming the presence of cancer.

 

I consider myself lucky to have had a team of highly professional and supportive doctors and nurses by my side. They guided me every step of the way, and I felt comfortable being open and honest with them about my life. This transparency was crucial because I wanted to ensure that nothing I did would interfere with my cancer treatment. My sole focus was to get rid of the cancer.

To help me cope during this challenging journey, I surrounded myself with friends and family who genuinely cared for me. Initially, I kept my diagnosis known only to a small circle of people close to me, but I allowed my caregivers to share the news with whomever they deemed necessary. I really believe it's worth remembering that caregivers need caregivers too.

 

Throughout this process, my sidekick was a stuffed Baymax doll, which accompanied me to every hospital visit. My nurses and doctors knew I wouldn't start treatment without it. Additionally, I took measures to make myself as comfortable as possible during chemotherapy sessions by bringing pillows from home. On days when I needed an extra boost, I'd dress up or even don colorful wigs. I even got a henna tattoo on my head once after I lost my hair from chemotherapy, and while it was beautiful, sitting for eight hours straight was definitely not something I'm patient enough to go through again.

 

 

D: I’ve heard that some cancer patients go through the five stages of grief after a diagnosis. Was that something you encountered, and if so, was there a particular resource that you found helpful in guiding you through the motions?

  

H: It definitely was something that I encountered. However, at the time, I didn’t realize that I was grieving. I think perhaps it was because I was solely focused on fighting cancer in the earlier stages of treatment. There were times where I would break down, consumed by thoughts of my family and how they would cope if I didn’t make it. As I went through my treatments, my body started to change. I lost my hair, gained weight, lost a breast, had extreme fatigue, and struggled with brain fog. It was when the dust had settled with my hospital treatments that I realized, I wasn’t the same person as I was before my diagnosis.

  

I felt like a stranger in my own skin. No matter how hard I tried to go back to the “old Hiba,” I just couldn’t and that caused me to wrestle with anger because I couldn’t do things the way I used to because I lacked the mental clarity (a.k.a chemo brain) or didn’t have the same physical energy. I was terrified because I couldn’t recognize this new person. My mental health took a toll as I struggled with my emotions.

  

Thankfully, I started seeking help from a psychologist which made a world of a difference in navigating my journey. I also found a young cancer survivorship group that was set up by the National Cancer Society of Malaysia. During the first support group meeting, I vividly remember telling myself “finally, people who actually get me!”. It was then that I started to slowly accept, the fact that I’m a different Hiba than I used to be; a newer, updated and better version.

  

D: That’s amazing! Hiba 2.0. Many breast cancer survivors we’ve spoken to have said that they did not feel very well informed about the treatment process and life after cancer. For example, little things like getting cold and having a metallic taste in your mouth during chemo was not spoken of. What was your experience like in that department - during and after treatment? Did you feel well informed? And what do you think helped you through the process?

  

H: It's disheartening to learn that many survivors weren't adequately informed before embarking on their treatment journeys. Perhaps some doctors may be hesitant to share too much information, fearing it might discourage patients from pursuing treatment. On the flip side, some patients might be resistant to hearing about the potential side effects of treatment, so doctors often hold back unless directly asked.

  

In my personal experience, things played out differently. I had a doctor who was refreshingly candid with me about every aspect of my treatment. I made it crystal clear to them that I wanted no sugarcoating; I needed all the cards on the table. It was my way of coping. I've always felt more anxious when kept in the dark, so I preferred being fully informed about my treatment plan. Knowing what to expect allowed me to prepare myself, mentally.

  

Hiba with her beloved nurses, and support system, during her chemotherapy treatments. Hiba remembers her relationships with these caregivers as some of the closest bonds formed in her lifetime.

 

Even when the topic of fertility came up, it was me who broached the subject – not the other way around. I wanted to explore options of preserving my fertility as a young patient. I believe this conversation is crucial because not all doctors will initiate it.

 

In my opinion, doctors should, at the very least, kickstart these discussions by asking a few key questions like:

 

1. Would you like to know more about the potential side effects of the treatment?
2. The treatment may affect your fertility. Would you like to explore options of preserving it?
3. Throughout this journey, please don't hesitate to ask for a reference if you need support for your mental health.

 

Things of that nature can invite patients to be active participants in these conversations to empower them to take control of their own lives and decisions rather than being left in the dark.

   

  

D: What would you say is the most stark difference in your life pre and post breast cancer?

 

H: I am a lot more attuned to my emotions. Nowadays when I need help, I voice out or seek professional help rather than suppressing my feelings. I have established healthier boundaries for myself, allow myself to make mistakes and I’m still on a journey of learning how to be more compassionate with myself.

 

D: Many survivors we speak found that shifting their wardrobe to accommodate mastectomies or lumpectomies was challenging. What was that experience like for you?

 

H: When I went through my mastectomy, my main focus was eliminating the tumor, and I didn't anticipate how it would impact something as seemingly trivial as shopping for lingerie—until the day I had to purchase my first post-surgery bra. Lingerie shopping had always been a personal delight for me. However, to my dismay, every bra I selected had to be returned to the shelf. Because I had only undergone a mastectomy on one breast, I could only wear bras designed with pockets to accommodate my prosthesis. Regrettably, the bras with pockets available were tailored for older women, had limited sizes, and lacked the flattering appeal I desired.

 

I vividly recall the heartbreak I felt during those moments. I no longer felt beautiful or sensual because I had no choice in what I could wear. Instead, I had to settle for what was accessible, and this shattered my self-esteem, leading me to dress down. It's astounding how such a seemingly small issue can have a profound impact. My only wish was to regain my sense of sensuality, not for anyone else but for myself.

 

 

In recent years, I've noticed an encouraging trend: lingerie brands are now offering more fashionable bras with pockets, often in casual, sports, or t-shirt styles. When Amour Caché approached me, I thought, "Finally! Sexy lingerie that I can actually wear!". I am not aware of any other brand that crafts intricately and beautifully designed lingerie like Amour Cache, specifically for breast cancer survivors. All I can say is thank you, from the depths of my heart, for granting me the confidence to wear lingerie again.

 

D: Thank you for your words. Every time we speak to survivors who find solace in our pieces, we feel so grateful we had the opportunity to create lingerie that would work for all people from all walks of life. We’ve spoken privately before about how the breast cancer survivorship experience is different for everyone, and how several racial, religious, grandmother’s tales can impact one’s experience. If you’re comfortable sharing here, what are some things you found in your personal experience that you wish could be dispelled for others in a similar intersection? *Hiba is a mixed-race, half Dutch and Malaysian, she is also a Muslim woman who would consider herself religious.

 

H: When I began to share my journey more openly, I found myself flooded with advice from both familiar faces and strangers. Recommendations ranged from miracle fruits and vegetables to miracle water and prayers, and even a miracle mattress. Suddenly, it seemed like everyone had become an expert on cancer and claimed to hold the key to its cure.

  

I also encountered fellow patients facing similar situations who grappled with their own unique challenges. In addition to the flood of unconventional remedies, I heard unsettling stories from patients suggesting:

 

• The cancer diagnosis happened because the patient wasn’t pious enough
• In-laws saying patients should refrain from intercourse with their partner because they had cancer
• Family members who withheld support, insisting patients consult with a religious leader instead of opting for chemotherapy
• Partners who left patients believing their cancer was inflicted on them through witchcraft
• Partners didn’t permit patients to undergo a mastectomy

 

"We need to shift the discourse [on cancer] from just being about the patient and caregiver, to being about the patient’s partnership."

 

Patients undergoing treatment really require support more than anything else. They don't need an onslaught of unsolicited advice or pressure to make decisions they may not be comfortable with, especially when they are already grappling with a waterfall of emotions. There are respectful ways to initiate conversations about these matters, rather than imposing decisions on someone regarding their own body.

 

 

D: Something you’re outspoken about is life after cancer. More specifically, love life after cancer; dating and pleasure. I feel like this is something that isn’t often spoken about - a rather not-asked-don’t-tell situation that, I feel, can leave a lot of survivors feeling hopeless, as though they should just accept “how things” are rather than seeking potential solutions to enjoy their love lives after cancer. What is your personal experience on this topic? Do you have advice for those going through the experience or seeking to learn more about the experience? Were there resources that helped you or people in the space that you found solace and guidance in?

 

H: In 2021, I went through a divorce. My ex and I had spent six years together before our journey took an unexpected turn, and he stood by me throughout my battle with cancer. Cancer, as many know, places a heavy burden on both the patient and their partner. Yet, what's often left unspoken is how it can affect the intimate aspects of a relationship. When I was undergoing treatment, I felt like less of a woman because of the many bodily changes I was experiencing. These changes seemed to happen overnight, and no amount of research could have prepared me for what I would endure.

 

These changes also impacted my relationship with my partner because neither of us knew how to navigate the emotional turbulence that came with my physical transformations. I battled feelings of guilt because I couldn't engage in intimacy as I once had. Following my mastectomy, I faced a loss of sensation in my chest area, alongside issues like vaginal dryness, hot flashes, and a reduced libido — all side effects of my cancer treatments. This struggle left me questioning my identity.

 

I yearned to discuss these challenges with someone, but these topics aren’t often openly discussed by people from conservative background in an Asian country. The loneliness I experienced inspired me to engage in more conversations about these hardships with fellow cancer survivors.

Following my divorce, I had to consider reentering the dating world, which is never easy, let alone after battling breast cancer. Questions swirled in my mind: should I disclose my cancer history to a potential date? When would be the right time? Would it affect how they viewed me? And if so, was I prepared? Was I even ready to engage in intimacy again?

 

What proved immensely helpful to me was seeking professional help and opening up to my support group. I even organized a private support group session dedicated to discussing topics on intimacy and invited a sex positive advocate and psychologist to provide insights to participants.

 

I firmly believe that healthcare professionals should initiate conversations about these intimacy challenges at the point of a cancer diagnosis and continue them throughout the treatment journey. We need to shift the discourse from just being about the patient and caregiver, to being about the patient’s partnership.

 

If there are medications with potential side effects to the patient’s sex life, it's crucial for doctors to discuss how the patient can manage these side effects. Often, patients and their partners are so consumed by the battle for survival that these issues are relegated to the back burner. Healthcare providers should be adaptable in their language, clarifying that it's not solely about sex but also about intimacy. There should also be support for partners because the process can be equally challenging for them.

 

In a relationship, maintaining open communication is important. Both parties should express their emotions, concerns, and expectations. When in doubt, seeking professional help can make a world of a difference. Unfortunately, most couples avoid discussing sex until they're in dire need of assistance.

 

Whether a patient is single or in a relationship, it's crucial to identify the root cause of any intimacy-related issues. It could stem from fatigue, concerns about meeting a partner's expectations, a diminished libido, or delayed arousal. Once a patient identifies the root cause, they can begin to explore ways to manage it, ultimately boosting their own self-confidence in moments of intimacy. It's important to recognize that things may not return to normal after treatment, which can lead to patients having body image issues and insecurities in intimate relationships.

 

Here are some tips that helped me:

 

• Take time to pamper yourself. Make the best out of a difficult situation. I sometimes take myself out for date night, and I love it!
• Be honest with yourself about what you're going through and learn to be kind to yourself. It’s important to remember that you and your body have gone through a lot.
• Openly share your feelings with your partner; remember, they are there to support you.
• Understand that hair loss can make you feel like you've lost your privacy, and it's okay to acknowledge that feeling.

• Partners, please give women the opportunity to express their feelings. Listening can work wonders — don't dismiss their concerns.
• Seek professional help from a psychologist, individually and together as a couple.

 

  

D: Why do you find it important to shed light on this post-cancer topic?

  

H: The weight of feeling undeserving of love can take a toll on a person's mental health, often leading to depressive and even suicidal thoughts. I personally struggled with this guilt, feeling trapped within myself as I became increasingly disconnected from my body. The fear of my inability to be intimate with my partner was suffocating and made me feel unworthy of love.

 

But this internal struggle also drove me to seek help and support because I realized that if I was feeling this way, there had to be other people experiencing similar emotions. Now that I’ve come out the other side, I want them to understand that they aren’t alone and that their current circumstances are not a reflection of who they are, but rather a reflection of the immense battle they’re facing.

 

It's crucial to acknowledge that having one breast or any physical changes does not make a patient any less of a woman. The more conversations we have about these deeply personal experiences, the better equipped we become in managing them. By discussing these topics openly and honestly, we can work towards normalizing these conversations, breaking down stigmas, and providing much-needed support and understanding for those who are going through similar challenges.

 

D: How did you advocate for yourself with doctors and dates? What is some advice you would give to someone in a similar position?

 

H: When it comes to choosing my medical team, I'm quite selective. I prioritize doctors with whom I can establish a genuine rapport, those who see me, not merely as a patient with a chart number but, as a human being. Building this sort of a relationship with my healthcare providers allows me to be open and honest about my experiences, paving the way for more meaningful and productive discussions.

 

I'm aware that not all patients have the luxury of selecting their doctors, especially in public healthcare settings. To those in such situations, I encourage you to take charge of your treatment journey. Conduct your own research on your treatment plan and don't hesitate to ask as many questions as necessary. As a patient, you have every right to access all the information you need before embarking on your treatment.

 

 In the realm of dating, I've always been upfront and candid. This could be attributed, in part, to my previous divorce. When I'm on a date, I make it a point to disclose that I'm a cancer survivor, a divorcee, and what I'm seeking in a relationship. This transparency serves two purposes: it helps me sift out individuals who may not share my goals, and it prevents me from investing time in someone whose aspirations don't align with mine.

 

  

However, I understand that not everyone is comfortable with such directness. My suggestion would be to assess the situation carefully. If, after a few dates, you believe there's potential for a meaningful connection, then broach the topic of cancer before things get too serious. This approach ensures fairness to both you and your potential partner. Ultimately, you deserve someone who can embrace every facet of your life, including your cancer journey.

 

D: As someone who has now been through the process, is there something about the medical process or the field of oncology that you would change? If so, what would it be?

 

H: Currently, I find myself running individual conversations with each doctor for various aspects of my care, and it can be quite draining. Sadly, many patients reach a breaking point when they grapple with severe side effects and face a lack of support. I strongly advocate for a more holistic approach from medical professionals, not limited to oncologists but encompassing the entire medical team.

 

It would be immensely beneficial for healthcare providers to convene and hold discussions as a team. These discussions should encompass a wide range of topics, including but not limited to relationships, fertility, mental health, and support, right from the moment a patient receives their diagnosis. Cancer can be an incredibly isolating journey, but it doesn't have to be that way. With the right guidance, patients can access valuable information and a network of support, ensuring that they are not navigating this challenging path alone.

 

D: Breast screenings and general breast health is also incredibly important, but stigma surrounding the discussion of certain topics may make it harder to disseminate and/or receive critical, life-saving information. According to the American Association for Cancer Research (AACR), Muslim women in America are less likely to get mammograms on a regular basis compared to non-Muslim women. However, we also know how important early detection is in preventing the spread and metastasis of cancer. When we discussed which organization you wanted 15% of Amour Caché’s sales from October to be donated to, you selected Know Your Lemons. Walk us through that decision and how you decided on Know Your Lemons as your organization of choice.

 

H: For many women, their breasts hold a deeply personal significance, intertwined with their confidence and sense of self. The thought of potentially losing your breasts can be emotionally overwhelming; it feels like losing a part of your identity. This emotional burden is compounded if you come from a community that stigmatizes discussions about breast health, making it even more challenging to voice concerns or say, "I think something may be wrong with my breasts. I need help."

 

  

When I discovered Know Your Lemons, I was struck by its ingenious approach to fostering conversations about this intimate aspect of the body. It provides a platform for both women and men to engage in educational discussions about breast health, transcending the discomfort associated with the topic. By using lemons as a symbolic representation of breasts, Know Your Lemons facilitates conversations that can be held with individuals of any gender, race, or age group. The profound impact it has in breaking down these societal barriers is truly remarkable. This innovative approach opens doors for raising awareness about breast cancer in ways that conventional discussions about breasts simply cannot achieve.

  

D: We 1000% agree. Thank you for taking the time to speak with us today, Hiba. You are a constant source of inspiration and light to us and to the breast cancer survivorship community. We thank you for all that you do and wish you nothing but abundance and happiness <3