Nobody knows nor understands what ACC is in Malaysia. When people hear that my Mom has cancer, it is usually, has she had chemotherapy? Is she in remission? Well, unfortunately, no such thing. And I am so tired of even caring to explain. If I say no to chemotherapy, they wonder why. ACC does not react to chemotherapy. There is no cure for ACC. It is a slow growing cancer that spreads very, very slowly and when it has enough power, will attack swiftly, and off you go. In my Mothe’rs case, to Heaven. Thank goodness, I have found some other ACC patients abroad through the power of facebook and understand better what these poor, poor people have to go through.
So exactly 12 years ago, when my Mom was diagnosed and given 6 months to live, I went to the Miracle Church to plead that Mom was given at least 5 years. In that short time, we made T1 on the fast train just so she could experience having a grand child before she went. After several operations to remove the tumour and consultations with experts worldwide, Mom was told to go live her life as there was nothing more they could do for her. If they touched her, the cancer would get aggressive and she would die. But it has been 12 years now, God has been incredibly kind.
It has not been an easy 12 years and we are very grateful for it, but it is worse now. For the last year, she has only seen the 4 walls of her bedroom laid on her bed with a toilet roll beside her pillow with folded pieces of blue Kleenex, each piece folded into 4; to soak up the saliva and blood that drips from her mouth when she lies down. She has absolutely no control of this. Her mouth is filled with the cancer growth so she can barely talk. She cannot open her mouth wide because the cancer with the scar tissues are all connected and tied together so brushing teeth is difficult for you can barely fit a toothbrush in. And of course, she cannot eat short of very tiny pieces of food or liquids. Her mouth is just a spreading cave of rot and smells quite unpleasant. But what do you do? What can she do?
When she goes out and gets seen by the public, or on the rare occasion when people come to meet her at home, nobody sees the suffering. For with her mouth closed, Mom looks like any healthy person short of being thin with wrinkles. The wrinkles are more pronounced these days due to her frail frame. When I weighed her more than a year ago, she was 35kg. She is now 30kg or less, I would never know as she would not allow me to weigh her anymore. She weighs less than my 8 year old and that is worrying. It is only a matter of time without proper nutrition that her organs start shutting down. But what do you do? What can she do?
If you were to google Adenoid Cyctic Carcinoma of the tongue, I will vouch that hers is much worse than the worst image you can see there. Ask her dentist. She does not have much teeth left and most are decaying, all brown or black. Just imagine the pain of your decayed teeth when you ever had one. She has an entire mouth of it coupled with the cancer which is a raw wound growth. How does she even gargle her mouth? It’s like pouring acid into it. No kidding. But what do you do? What can she do?
Her biggest complain is the pain. It is just so painful. Having an open wound for a week or two is one thing, but having to live with this open wound for years and years when every time something touched your mouth internally, it feels like a knife slicing your wound up bigger? That would have put me off eating or brushing teeth already long ago. In fact, I would have just asked God for an early retirement. But not Mom. She is making this sacrifice for us and we are so grateful.
The fight continues.