Regrets

This is an extremely tough post to write, especially since I have buried these memories for the past 15 years. But I am called to write this in my blog, as I want Aiden and Ian to read a piece of my journey with my mum… caring for her until she passed on due to lung cancer.

Before she was diagnosed, she had a prolonged cough and started losing weight. We were scheduled to head to China to visit the Great Wall of China, so she went to the doctor to get a checkup before our trip. The doctor did a chest x-ray (which showed some congestion) and a biopsy; but told her that a bit of fresh air during our holiday would do her some good.

So off we went and had the time of our lives. Only to come back to the results of the biopsy that showed that she had lung cancer... at stage 3B.

Lung cancer is the most common cause of death from cancer worldwide; 1 to 5 cancer death is due to lung cancer. Closer to home, 10 people die of lung cancer daily. It is one of the most aggressive cancers, where 60% of those diagnosed die within one year after diagnosis. Patients with advanced lung cancer have a 5-year overall survival rate of only 2%!

Why didn't we detect it earlier? Unlike breast cancer which manifests itself in a lump, there is really no early diagnosis tool for early detection of lung cancer. Most patients do not have symptoms until the cancer is already at an advanced stage. When eventually diagnosed, 9 out of 10 Malaysians are already in the advanced stage (Stage 3 & 4). What makes it more depressing is that the symptoms are generally occurrences that you would typically push away as 'common sickness', for example shortness of breath, lethargy or weight loss with no known causes.

It was rough on us the first few weeks. I was barely 19 then, hence due to my age, the doctors never really considered me as the primary caregiver. I was never really given a clear prognosis and timeline. Looking back, if I had known that my mum was only going to be around for another 8 months, I would have dropped everything to spend every single precious minute with her.

Due to this lack of information, I decided to continue with my university classes, albeit less credit hours. (Cue huge regret here.) In reality, I struggled with my role as primary caregiver in combination with my education. I juggled caring for my mother in between classes. The hospital became my home, and I would commute between hospital and university daily. I learned to drive all by myself, and became independent all on my own.

The doctors recommended chemotherapy at an upcoming private cancer institute, about an hour away from town. Our financial funds depleted significantly due to this. I had to keep digging into my mum's savings every few days or so. Not to mention daily expenses and bills to be paid. She worried about money, especially since she knew that I would need the money to survive if she were to pass on.

Despite all this, my mum was a brave and strong woman. She never really showed me how much pain she was in, despite the fact that she kept asking for stronger doses of morphine. She was an easy patient to care for, and she kept apologizing for asking her own daughter to shower and change her. Oh Mum, if you only knew that deep in my heart, I never minded. I would gladly do it all over again if it meant that I could rewind time to spend more time with you.

Let's take a step back and question why my mum contracted lung cancer. Smoking is by far the leading risk factor for lung cancer. But she doesn't smoke, and we don't even have a history of cancer in the family. She worked in an office and was never exposed to harmful substances in the workplace. The simple answer is, we do not know. And if my mum who had zero tobacco use was diagnosed with lung cancer, do you think YOU should take your chances by smoking? Food for thought.

Image from https://visual.ly/community/infographic/health/lung-cancer-causes

As time passed by, her cancer got even more aggressive, which in turn shrunk her veins. Every time the doctors wanted to put in a needle, I would walk away because I just could not bear listening to my mum cry out in pain. Oh if only I could share her pain, I would gladly offer my veins in her place.

Her hair started falling off due to chemotherapy so she would wear a head scarf to cover her imperfections. I never saw them as imperfections though, but she would constantly get so subconscious about herself that she refused to meet with anyone other than immediate family.

As her health got worse, she kept depending on pure oxygen flow and morphine to last her the day. She would wake me up, sleeping on a recliner chair just beside her on the hospital bed and ask for more morphine in the middle of the night. She was in extreme pain, but she did not complain excessively. It was sad to see her withering away. So sad that I actually wished that God would ease her from her pain and take her quickly. Cue huge regret again. After I lost her, I had a hard time accepting the fact that I had actually registered such thoughts. It ate at me so much, that sometimes I would cry myself to sleep apologizing for wishing her away. It took me years before I could actually forgive myself.

Early on in her cancer journey, my mum once told me that she would like to be brought home to pass on. I sincerely do not know whether that was an effort to reduce the hospital bills, or whether she sincerely wanted to be home. Close to the end of my mum's journey on earth, the doctor (now finally comfortable with my role as caregiver) told me that I could bring her home if I wanted to. I remember clearly that morning in my head. She complained that she could not see clearly with her eyes. I responded by telling her that I was making preparations for her to go home. Her eyes widened, and she understood that she was very close to the end. She started saying that she didn't want to go home... lamenting about how would she survive without oxygen flow and such. I coaxed her into the ambulance and I remember her telling me on the way home, "Min... Mama takut nak mati." (Min, I'm scared of dying.) All I could say was "I love you Mama..." Till today, I still feel as if I forced her home when she did not want to. I thought I was honoring her wishes, but what if she had survived another day in the hospital instead of home?

But my biggest regret was to actually agree to chemotherapy. I understand why my mum did it... It was simply the natural thing to do. It was to treat her cancer. If I was in her shoes I would probably do the same. Accepting the decision to not do chemotherapy would be accepting death. But the side effects made her so weak, so quickly, that we did not manage to do anything else other than stay confined in the hospital. After what I've went through with my mum, I sincerely believe now that there is no point in lengthening life if it's not quality of life.

So, what are the other treatment option for cancer? MSD organized a lung cancer and melanoma workshop recently to educate the public about the two types of cancers. Given that this subject is so close to home, I attended the workshop with hopes of learning about other treatment options. In return, l learnt about newer cancer treatment option.

Fellow bloggers and influencers at the MSD Lung Cancer and Melanoma Workshop, listening intently to Dr Tho Lye Mun - Consultant Clinical Oncologist.

Immunotherapy is the newer treatment option that uses certain parts of a person's immune system to fight cancer. Our natural immune system usually destroys foreign substances, but sometimes cancer cells and normal cells do not have distinct differences, allowing these cancer cells to escape detection and destruction.

With immunotherapy, our immune system can be enhanced to recognize and mount a response against cancer cells. The immune system can also be stimulated to work harder and smarter against cancer cells. Through immunotherapy, you can also supplement with man-made immune system proteins which give the immune system an extra boost.

Yours truly asking Dr Tho about the correlation of vaping to lung cancer.

A photo with Dr Tho and Niki Cheong, who shared his experience on how cancer has impacted his family and friends.

Statistics are showing great potential for immunotherapy to increase long term survival, with lesser side effects. A recent study showed a 3-year overall survival rate of 26.4%, a significant increase if compared to prior statistics. This is indeed emerging as a new and exciting breakthrough in treatment against cancer.

The impact of cancer is real, but a new era of cancer treatment is here. If you are struggling with cancer or know of someone who is, reach out to your doctor or oncologist for more information on immunotherapy.