Resilience in Pink – My Personal Experience

Diagnosis

In my last blog on caregiving, I shared that “It’s always my personal journey that truly inspires me to share my insights.” Poignantly, in the same month, I received my diagnosis. I remembered this statement despite all my conflicting emotions at the time. It felt as though God had said, “You want inspiration? Here, take this.”

I don’t think I will ever tell someone, “I know how you feel.” You can try to empathize, but it has its limitations. The original feelings were unlike anything I had ever understood before, despite meeting many survivors. As someone working in the field, I always believed it could never happen to me. Ironically, I had often said in countless awareness programs that it could happen to anyone at any time. I realized, until this prognosis, I had always been very proud of my health. The fact that I could still donate blood and platelets because I wasn’t on any medication made me believe I would always be the caregiver, not the patient. Panting on climbing steps and joint pains were acceptable for my age.

The dread of being a cancer patient was constantly at the back of my mind. I woke up with that thought. The spiritual question of “Why me?” doesn’t escape anyone. I tried pacifying myself with thoughts shared on WhatsApp messages, which talked about why one never asks God “why me” when things go well.

The scariest part was the PET scan. Until I got the results confirming it had not spread, I was terrified. I confused all my normal aches and pains as metastasis and feared a bad prognosis. However, I was lucky; it turned out to be early detection in the first stage.

I remember telling my daughter very casually in the past that I did not have any unfulfilled desires and would be okay to die peacefully in my sleep at any time. But now, I was afraid to die and did not hesitate to admit, “No, I was wrong; I want to live.” Perhaps my fear was actually about the suffering, not about death.

Coping

I started watching countless YouTube videos on breast cancer. My husband wanted me to watch something more positive, but like most women, I found strength in the stories of others, and they comforted me a lot.

What really helped in my journey was my experience in working on palliative care. I had seen patients not just at advanced stages but also those accompanied by poverty. Even with my disease, I was able to stay positive and have a lot of gratitude. I had immediately undergone a scan and received the results soon after. I remembered all the stories of how patients could not afford a PET scan and had to wait for surgery and treatment. I imagined how it would be for them with the growing tumour in your body and you cannot know more or do anything about it simply because you couldn’t afford to pay for it.

I tried to continue my routine at work as far as possible and clarified that it helped me feel normal. In fact, immediately after my diagnosis and planning a surgery date, I went to Delhi for an exposure visit to another palliative care organization. It would have been very unprofessional to cancel it last minute, and I would miss out on an opportunity. In Delhi, I had one more experience that helped me a lot. I went to the house of an old couple who lived in a shanty. The wife was a cancer patient, and the husband was an amputee. They lived in conditions of despair, and she couldn’t even be operated on because of several complications. We were there because she needed nursing support as her Ryles tube had got blocked. But I will never forget the smile on her face that reached her eyes, and that happy face remains etched in my memory . Who was I to complain if she could still be happy? What I had was nothing compared to her. My only grouse was that I had actually planned a dream vacation to Switzerland, which I could not go for and perhaps may not be able to plan again.

I was also very lucky to have my husband’s friend as my surgeon, whom I could trust and who helped me normalize everything and convinced me that I was cancer-free post-surgery. He shared all the facts and gave me time to decide what I wanted at every step, making my treatment much smoother. I had often thought in the past that if required, I would be fine to lose a breast and wasn’t so body-conscious. But when it came to making that important decision, and when my doctor said if I wasn’t paranoid, I need not, I realized how important it was for me. I could connect to all the women who had to make that important decision on whether to have a mastectomy.

A lot of people shared that breast cancer was the best type of cancer to have, but you can believe that only till you get it. When it comes to yourself, the “C” word is enough. Undoubtedly, there has been a lot of research on it, and on a positive note, I now believe doctors when they say that most cancers are curable now. Today, besides being an advocate for palliative care, I plan to become a strong advocate for early screening and detection because that made a huge difference for me, and I could choose not to take chemotherapy at all.

Learnings: Personal and Professional

I have learned a lot from my experience. I had always believed I was a strong and resilient woman, and I learned that this matched others’ perception of me. That was a real morale booster and helped me deal with the challenge bravely. Secondly, I was overwhelmed with the love and support I received from everyone, and this will always stay with me.

I always knew it, but this experience reiterated that I should give more attention to my family and have a good work-life balance. It helped me get closer to my husband and daughter, who were my pillars of strength. I had been scared to tell my daughter and worried that she would be frightened and crumble, but she was the one who held my hand and counselled me when I was scared. Finally, I have learned not to take myself so seriously and make a serious effort to enjoy life’s small pleasures.

On the professional front, I am so glad that as a strategy in vulnerable communities, we at Romila Palliative Care always speak about breast cancer screening first before introducing the topic of palliative care. Prevention of the disease is not part of palliative care, we are often told, but now I am not so sure because early screening and detection can reduce so much suffering. I am also proud that at Romila Palliative Care, we have been running a breast cancer support group for the last eight years, and I believe even more in it now that women survivors gain strength from other women’s stories. Hope this one helps someone too.