"Sorry Aida, You Have Cancer"

Now that my surgery was done, I had expected to be able to enjoy my food again. Of course, this did not happen immediately and I was very disappointed. The problem was that I had expected to open my mouth like usual, to chew like usual, to be back at 100 per cent, but this is not possible. When I’d realized that and scaled down my expectations to 70 per cent, eating was no longer a big problem.

September 29: I really look forward to see Dr Amin to remove the blue stitches hanging out from my surgery wound; 12 stitches altogether. As I reached Dr Amin’ consulting room with Sara, he greeted us and began talking. “How are you feeling?... Parents mana?... Results back… unusual… very rare…quite unexpected… Adenoid Cystic Carcinoma… malignant… slow-growing... lain kali datang dengan parents… Sorry Aida, you have cancer”.

The news came as a shock to me! I did not expect to hear this from him; I wasn’t prepared for this moment. The good news was that my cancer was slow-growing and curable, inshaAllah. But I have to trust Dr Amin. Primary treatment for this cancer is surgical removal with clean margin. This can be challenging due to the nature of the cancer that spread along nerve tracts.

So now, I need a second exploratory surgery as soon as possible. Oh no, not another surgery!! I asked Dr Amin, is it really necessary to undergo this second operation, as I am still recovering from the first one. He told me it is very important that he proceed with this second surgery as the first surgery was at surgical margin. He then asked me to talk to my parents, meet an oncologist for a second opinion and come back on Friday.

HISTOPATHOLOGY REPORT (Validated by Dr Nik Azizah Wan Kadir - Consultant Pathologist of Pantai Hospital Kuala Lumpur):

Nature of specimen:

"Recurrent tumour submandibular region – Excised tumour tissue"

Interpretation:

"Submandibular gland with an adenoid cystic carcinoma. Tumour is at surgical margins. This is a slow growing but highly malignant neoplasm with a remarkable capacity for recurrence".

Full histopathology report:

Not knowing how to react, I went to the Emergency Room to get my stitches removed. At the same time, Sara made some phone calls to inform the rest about the shocking news. I’d break the news of the cancer to Azmir in a perfunctory yet exquisitely dramatic SMS (Looking back, I should’ve been less dramatic about it). All I can think about was my uncertain future; I felt like cancer had robbed me of a sense of control over my life, as if my life was turned upside down. “Why me? What will happen to me? Will cancer change me? Is all hope gone?”, I’d asked myself. The answer was simple - I have no answers!

In the car, both me and Sara drove back in awkward silence. It was really hard to get my sister talk about my cancer. Finally, I just said to her, “I know you’re really worried and scared. So am I. Let’s talk about it”. She was so relieved that I had brought up the subject.

As we reached home, everyone was already waiting for us – Mom, Dad, Amir, Hafez, Ibu and Azmir. There was tension in the air as we entered the living room. At first, everyone felt overwhelmed with despair but once we started to comfortably talk about my cancer, gathered information from the internet– learning as much as we can about ACC and its treatment, I guess we started to feel more in control and it was easier to make decision when we know what to expect. So we’d decided to meet an oncologist at Wijaya International Medical Centre (upon recommendation from Auntie Linda, whose brother is also a cancer patient).

That night, I prayed that God will help me go through this ordeal and that my family will emerge stronger. I believe that everything happened for a reason. Nothing happens by chance or by means of good luck. God will never give us anything we can’t handle.

“God does not burden any human being with more than he is able to bear…”. (Qoran: Al-Baqarah, 2:286)

WHAT CANCER CANNOT DO:

September 30: Feeling more positive today, I went to Wijaya International Medical Centre with Mom, Auntie Linda and Uncle Ali to seek the oncologist’ advice and to learn more about ACC and its treatment. Auntie Linda and Uncle Ali were really supportive and Mom had a very long list of questions and concerns prepared. We met Dato’ Dr Mohamed Ibrahim A Wahid (Consultant Clinical Oncologist) who is very helpful and patiently explained and answered any questions presented to him.

One thing for sure is that he agreed with Dr Amin’ treatment plan – surgical removal with clean margins. Then he suggested post-operative adjuvant radiotherapy with or without chemotherapy, but for sure he will not perform it without a clean margin. He also asked me to read my health insurance policy and call the insurance company to check on whether or not radiotherapy is covered under the policy as it might cost a bomb. His careful explanation on how radiotherapy works and its side effects was very helpful as it put things into perspective. He is, after all, the President of the Malaysian Oncological Society!

October 1: I went to see Dr Amin with Mom and Dad. After negotiation, we agreed that the operation should happen as soon as possible as Dr Amin is going to Mecca to perform Hajj; the exact operation date – 19 October. That is approximately two weeks away! Sigh... He wanted to open up the right side of my neck and remove enough material (lymph nodes, muscles etc.) to get some idea of the spread – then he’d know how to proceed. He also wanted to remove my right sublingual gland as this was the ‘neighbouring area’ to the removed submandibular gland (where my ACC was first discovered).

When everything was settled, I put together a list of people who I thought I should tell, and how I should tell them as it was something very personal to me. I am sorry if I'd resorted to inform some of you via SMS as it was really hard for me to find the right words and I don't think I have the courage to do it personally. I'm afraid I might break down and cry. During the next few weeks, while waiting for the second surgery, I was able to focus and not get distracted by evil thoughts of metastasis. I was incredibly touched by the SMSes, e-mails, FB messages, flowers, gifts and visitors I received. Thank you all for your prayers and support.