Adenoid Cystic Carcinoma in Malaysia

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.

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Who is Mamapumpkin?
Mamapumpkin spent 7 years in London committing crimes to gain her Bartlett BSc in Architecture. She spent 7 years as a Stay At Home Mom raising her children as documented in this Mamapumpkin blog since over 10 years ago and thereafter returned to the Corporate World stronger than ever. Her last job as Country Director of a British Railway Signalling organisation saw her getting ill with an aortal and mitral heart valve regurgitation and early stage cancer. Through her journey from working to not working to working again, she sets out to prove to all women that they can do anything and everything that they set out to do; as long as they have that fire of desire burning within and the drive to work hard. Even better with oodles of love, passion and integrity.

Despite being ill, she has grown a network marketing business from very little knowledge and experience in the otherwise infamously known MLM (Multi-Level Marketing) industry, racing from an income of ZERO to RM 100,000 monthly in merely 2 years. She is a firm believer of the MLM business model but realises the pitfalls too and understands how and why the majority of people would shy away (or zoom far away) from any MLM business.

She is now pondering the title of her new book, From Zero to 100,000 RM monthly in 2 years and has a sequel in the pipeline with the aim of helping real professionals succeed in the World of MLM. Always the giver, Mamapumpkin has supported orphans for over 30 years and has now extended her care to the sick, single mothers, and even struggling families. She believes that with the MLM business model, we can all have a life of our own desires to enable real contribution into the world.

A beautiful life without limits.

Mamapumpkin currently manages the Homeschooling Hub Malaysia on Facebook. She also runs Working Women Malaysia (not THAT kind of Working Women!), Mamapumpkin - Creating A Life of Abundance, and Funky Moms on Facebook to offer REAL support to all women who want career and life success. She is a living testimony that women really can have a lot. Being financially free has enabled her to travel the world anytime anywhere doing anything, and she spends most of her day to day with her children, reading and supporting other women.

For enquiries, please contact her at mamapumpkin at gmail dot com or WhatsApp her at +6012-2333840
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3 Comments

  1. *hugs* to you and your mom. 12 years is very long since she was told back then that she only had 6 months. this is definitely with mixed feelings coz it is painful to see our loved ones suffering but more painful to lose them forever. :(… your mom is one fighter! *hugs*

  2. Fellow ACC ‘wearer’, and so glad your mom has you on her side. 7 years for me since diagnoses. If I can look up anything as a medical librarian that would ease your mom’s pain, please ask – it would be an honor to help even a little bit. Joining Syn in sending hugs, even in electronic form.

  3. I just dont know what to say after reading this painful post and just feel like crying. I just cant imagine how much your mom must be in pain and all of you have to see her go through this. Shall continue to have her in my daily prayers. You are such a strong person Patsy. GOD Bless!

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