Home Story Lah I will not go quietly

I will not go quietly

Two out of many side effects of chemotherapy and cancer treatments is what we call a brain fog where we get confused or tend to lose focus; and a chemo brain, where we tend to forget things or have difficulty to recall certain things, timely. Unfortunately, this may still affect us for some years after we completed our cancer treatments.

Yesterday, I had forgotten to take my daily dose of Neratinib oral chemo until pretty late last night after dinner. And I increased my daily dose to 5 tablets as Dr. Azura Deniel, my Oncologist at KPJ Ampang Puteri Specialist Hospital has asked me to. I need to increase my daily dose by one tablet each Monday until I get to six tablets a day. Thereafter it will be six tablets daily for one year.

Nevertheless, my Oncologist also said, if I get adverse side effects, then I will need to reduce my daily dose back to four tablets until my body adjusts. So, we will see about today and tomorrow if I need to reduce my dose, eh.

This morning I woke up with nausea, vomiting and a bad diarrhoea. My world was spinning in spirals. I felt like I was walking in a spinning kaleidoscope. It was hard to balance when I walk. Just like when you get vertigo. It took me many hours just to get out of bed this morning, because I couldn’t walk in straight line. Like a bad hangover.

Neratinib oral chemo is in a class of medications called kinase inhibitors. It works by blocking the action of an abnormal protein that signals cancer cells to multiply. This helps slow or stop the spread of cancer cells. So, this wonder drug will help me prevent cancer recurrence.

Common side effects of Neratinib include nausea, vomiting, diarrhoea, gum bleeding, mouth sores, dry mouth, nosebleed, abdominal pain, heartburn or indigestion, loss of appetite, weight loss, fatigue, rash, dry skin, dehydration, nail disorders, muscle spasms, and urinary tract infection.

The only part that I look forward to is weight loss.

Last round of treatments I lost 20kg in two years. I gained back 5kg. I think I would probably lose 10kg over this one year. Well, perhaps, as it is affecting my taste bud. Everything I eat and drink has a metallic after taste. That is a real killjoy when I eat. While my appetite is good, my taste bud is not cooperating.

Fortunately, hair loss has not been reported as a side effect of Neratinib! Even though I looked cool with a bald head, I really don’t look forward to be bald again in the future.

Anyhow, finally after many hours, I was able to get out of bed, took a shower, had a small meal as I could not eat much without feeling like throwing up.

I thought after all those 49 rounds of treatments that I went through these past two years; this will be a breeze. But I guess I was wrong, it’s not an easy journey, this one. Haih, not as easy as I thought. But I know, I’ll ace this eventually.

I remember what I used to tell myself on a day like this one: No matter how you feel, get up, dress up, show up, and never ever give up!

So here I am, showing up, even if all I can manage is working from home for today.

As my cancer warrior friend, Kim Lim and I always tell ourselves, do what we can, while we can.

Tak boleh berlari, kita berjalan. Tak boleh berjalan, kita merangkak. Tak boleh merangkak, kita mengesot. Tak boleh mengesot, kita tidur lah!

As Pink Unity said in an awareness campaign, I WILL NOT GO QUIETLY.

On that note, Al Fatihah for cancer warriors who have lost in their battle in this war against cancer.

Al Fatihah untuk arwah emak. My late mother passed away in October 2020 due to end stage breast and lung cancer, and she refused to go for cancer treatments.

Al Fatihah for arwah Adibah Noor, who passed away on Saturday due to advance stage ovarian cancer. I am her fan.

Al Fatihah to arwah Faiza Nonie, my cancer warrior friend in HOPE cancer support group under KPJ Ampang Puteri, who just passed away a week ago.

Al Fatihah to arwah Mimi Zarina my cancer warrior friend and ex neighbour who passed away not long ago, in March 2022. It’s still fresh in mind.

Al Fatihah for arwah Mahmuza Mahmud, my university senior who lost in her battle against end stage breast cancer in May 2021.

Al Fatihah for arwah Abdul Halim Md Juhari, my former colleague at Advance Pact who passed in August 2020 after five years of fighting against end stage lung cancer. He was a fighter right to the end.

Al Fatihah too, for arwah Tahir, my ex-husband who passed away in October 2019 due to end stage cancer.

Al Fatihah for all cancer warriors who fell in their battle in a war against cancer. Semoga arwah dihimpun bersama ahli Jannah.

To cancer warriors who are still standing, fighting strong, alive and kicking ass, may God make it easy for all of us. Semoga Allah permudahkan untuk kita semua. May God bless us all and may grant us with health, wealth and happiness.