Tuesday, December 28, 2010

My Tongueless Talk

Salam and hi everybody,

In my earlier post, I mentioned about the Mouth Cancer Symposium in KL. In my anxiety as the big day came close, I prepared a complete text for the talk and a slide presentation because I was not sure how far the audience would understand me. I decided to just read up the text throughout the talk while flashing the main points on the screen. And here is my complete text:

Assalamualaikum and a very good afternoon,

First of all I would like to praise Allah for giving me a chance to stand here, talking to all of you wonderful people in this wonderful place. And a million thanks to Dr Vinod from the Mouth Cancer Foundation for having the trust in me to share with you my experience in this mouth cancer journey.

I was finally diagnosed with squamous cell carcinoma on the tongue on March 16 2008 after going through weeks of painful ulcer. Well, that’s what I thought…just an ulcer. And funny enough, so did the few dentists that I went to. I was given antibiotics, pain killers and antiseptic gel. This went on for some time. And I was losing weight drastically. When it got really unbearable, when I could not move my tongue any longer and had to resort to soft diet, my husband put his foot down and forced me to have it checked at the Hospital Sultan Abdul Halim, Sg Petani. Dr Sumairi, was the first doctor who was alarmed the minute he looked at the lesion and insisted on a biopsy right away. And from the grim expression on his face, I knew that the worst was yet to come.

True enough, 2 weeks after the biopsy my husband and I were told by Dr Sumairi that I had tongue cancer and it was malignant. I could feel everything spinning around me. It was as if time had stopped right there and then. What? Cancer? Me? It sounded impossible for someone like me to have cancer. I was a very healthy person who only took 2 sick leaves annually all these years except of course when I had kids. I took great care with my diet. And I was an active person. This is the kind of thing that only happens to other people. Not me. And yet, there I was trying to take in the reality that hit me. Dr Sumairi went on to explain that he had to refer my case to the ENT specialist and an appointment was set with Dr Hisham at the hospital which was the following week.

After that, I was referred to Dr Zulkifli at Hospital Sultanah Bahiyah, Alor Star and things moved in a flash from there on; the scans, the bloodwork, the x-rays… Dr Zul explained that he would have to cut my chin right in the middle and perform total glossectomy because the cancer had spread to the midline of my tongue and also he said for a young patient and without a risk factor like me, the cancer was very aggressive and he did not want to take any chances. I mean I’ve never smoked a cigarette, chewed a single betel leave and sure as hell not taken a drop of alcohol. He said, aggressive cancer required aggressive action; hence the total removal of my tongue. Well then, I said to Dr Zul, I might as well have taken up smoking…..

The surgery would take at least 6 hours which would also entail taking some tissue from my chest to replace the cancerous tongue. I would be warded for at least 2 weeks. Communication could only take place through hand signals or writing for the time being. Breathing would be through a trachy. And I would not be able to speak and eat like I used to for the rest of my life. He even talked about being medically boarded since I’m a teacher. Then, he asked, do you agree? It was like asking me, “your life or your tongue?”. Well, that was the simplest question anyone had ever asked me.. the answer was easy…my life, of course..and that easiest answer had led to the biggest decision I had ever made in my entire life which was the surgery that had permanently altered the way I live my life…and forced me to accept the different ways of doing basic activities like eating and speaking as normal, or shall we say, a new normal..

My surgery took place on April 16. I was out for 7 hours. And what happened after that was exactly as explained by Dr Zul except for the torturous phlegm building up in my chest and the equally torturous suction by the nurse. The tubes came out day after day and I was totally freed from the tubes after 6 days. I was able to walk around after 4 days and I felt really great. After 2 weeks, I was able to sip liquids and swallow soft foods and the best thing was I was actually able to somewhat enjoy the food. Then, I was informed by the oncologist that the lab test showed that my cancer was at stage 2 and therefore, I did not need to go through chemo and radiotherapies. Of course I was happy about it because chemo and radio sounded horrible but I was also worried at the same time, worried about the possibility of a recurrence.

That was when, in my hunger for information, I stumbled upon the Mouth Cancer Foundation website and straightaway joined in and participated in the forum. I gained a lot of information about oral cancer from the members who have gone through similar experience. The forum offers a lot of comfort, encouragement and motivation because the members are always ready to share their experience. That was how Dr Vinod and many other mouth cancer survivors and I became friends. I’ve made friends with people like Pete, Mimi, Deborah, Julia, and Ananth and Nigel, to name a few. No, that’s an understatement. We actually became family..we cried when someone whom we’ve never even met passed on. Ananth and Nigel are no longer with us.

We comfort each other when things get rough on any one of us. When I had any question at all, for example, when I was about to have my chemo and radiotherapy, I did not know what to expect. So, I just posted a question and voila…loads of information came pouring in from members of the forum who had gone through the process and from Dr Vinod himself. It was a great comfort to learn that a great many people do survive the ordeal of the treatments. So, I was mentally prepared to go through the treatments. I used to post on the forum bugging everybody about what to do when I got nauseous, or help…I have thick phlegm in my throat, or my mouth is burning…and I was never disappointed…

The worry about the recurrence was not baseless because in July, I noticed a bump on my gum and there was a slight bleeding. In the next appointment with Dr Zul, I brought that to his attention and sure enough the cancer came back, back with a vengeance. So, another surgery was planned and on August 16 2008, I was pushed into the operation theatre again and this time my right mandible was removed and replaced with a titanium plate. When I was able to get my hands on my laptop again, the whole gang in the online support group cheered on. It really was a good feeling. This time round, Dr Zul insisted that I went through chemotherapy and radiotherapy. And I did. I had 30 zaps of radio and 7 rounds of chemo. All my treatments finished on November 21st 2008 and alhamdulillah I’ve been ok up to now.

Life after total glossectomy has not been too bad. Even though I can’t enjoy food as I used to before cancer, I’ve been able to get to my original weight. Thanks to Dr Zul who suggested that I had a PEG tube fixed. Most of my food consist of whole meal bread, ensure milk, brown rice powder and oats, all blended together. The liquid food is poured down the tube. I’ve been surviving on the PEG tube for over a year now and I feel alright. Do I have any craving for laksa, rojak or mee rebus? Yes, at times but as long as my tummy is well stuffed, I’ll be ok. I don’t have any problem at all if there’s anyone eating my favourite food in front of me.

To a certain extent, my social life has been affected. I became a bit withdrawn. Embarrassed and worried that others would not understand a word I say. I was even asked by a 3 yr old girl whether or not I used to say bad things to people because she said that God would cut your tongue off if you do. That really embarrassed her mother and she apologized to me profusely. I just smiled at her.. Well, I would have been tongue tied if I had any… What would you say to her? After all, we the adults are ones who have been drumming such ideas into the kids’ minds, am I right? But, as time goes by, slowly I have been able to adjust to my new normal and gained more confidence to speak in public.

I consider myself fortunate in the sense that I’m blessed with friends and families who tirelessly and continuously support and encourage me to move on. They keep on saying that they can understand me perfectly and all I need to do is to speak slowly. I know that they are telling me the truth because I realize that I don’t have to repeat myself that often any more. My children are already used to my new accent and I have no problem at all communicating with them. The best thing about all these is that I get undivided attention from my listeners as they try to figure out what I have to say. And standing here, speaking in front of all of you is a testament of my confidence. And for that, I have Dr Vinod to thank for. It means a lot to me.

When I was diagnosed with a malignant cancer of the tongue, I never thought I’d be speaking in front of an audience again. I was so sure that everything is over, everything that I’ve worked so hard for is over. In short, my live is over. But then, really, not having a tongue is not that bad. There are ways to overcome the inabilities caused by the handicap with the help of technology. Those days when I could not speak at all, I used to carry my laptop everywhere especially when I went to see my doctors. I just typed in my questions. But now, I don’t need to use it that much anymore.

I’d like to take this opportunity to thank the marvelous team of surgeons from the Sultanah Bahiyah Hospital, Alor Star who did a marvelous job on me, my families and online as well as offline friends who have been supporting me all this while because without them and the help from Allah, I don’t think I’d be able to share my experience with you today. And of course, Dr Vinod who went out of his way to fix me a prosthesis (palatal augmentation) which has helped me a lot in swallowing. Nevertheless, I also wish that I was given some kind of professional speech therapy to help me get on track in the speaking and eating department.

Thank you very much for your kind attention.

Yes, I did decide to read the text word for word. However, as soon as I stood at the podium, I just forgot all about it and just blurted out whatever I had in mind by referring to the points I had listed in my slides. I guess I just could not do away with the teacher in me!!!!! hahahaha Therefore, I thought it would be best to share with you my complete text.

By the way, I'll get back to my novel soon...and thanks a lot for the encouraging comments on my post "Aspiring to become a novelist".

Bye, for now..

Monday, December 20, 2010

Mouth Cancer Symposium

Hello folks,

Something exciting for me came up 2 weeks ago when I received an email from Dr Vinod of the Mouth Cancer Foundation, UK. He invited me to share my cancer experience in a Mouth Cancer Symposium in Kuala Lumpur which would be attended by dentists and oral cancer researchers. After giving it a lot of thought, I agreed to do it for a number of reasons:

1. The lacking of awareness on the importance of patient support among the medical fraternity.

2. The lacking of awareness on the importance of informing the patients on the consequence of late diagnosis among dentists.

3. The importance of convincing the oral cancer patients to face this disease head on.

4. My personal selfish reason: to boost my confidence in speaking in front of an audience and make myself understood..

I spoke for about 25 minutes..and was stunned by the undivided attention I got from the audience. I thought I sounded horrible but I went on anyway...no turning back.

I only knew that I was understood when they clapped after I said that "this is the first time I have the courage to speak in front of a large audience after I lost my tongue". And that was a good feeling......

So long.....


Monday, September 13, 2010

Aspiring to Become a Novelist


Many friends have suggested that I write a novel to educate the public on what I've been through. After giving it a lot of thoughts, I finally sat down and tried to write something. I'm proud to say that I've written about 60 pages of the it already. I still have a long way to go. But I hope to finish it one fine day and able to declare myself a novelist...hahaha... Please pray for that to happen, folks! I'd like to share a small but meaningful partof what I've written with you. Comments are greatly appreciated.

True to his words, Fahmi got there before 9.00 am. She was ready to go home for the weekend. Since there was no radiotherapy during weekends, the doctors agreed to let her go home. Fahmi took her bags and off they went. Penang General Hospital had always been busy with patients, nurses, doctors, visitors coming and going. The parking lots were almost always full. So, they had to make a long walk to the car because Fahmi had to park the car at the very end of the hospital compound. The children were so happy to see her, especially Shumael. Shumael was a bit shocked when he saw her because her chin and neck area looked slightly brownish because by then she already had 5 zaps of radiation. That night, she could not sleep. She could feel her phlegm filling her throat.

She had to get up at least twice to clear her throat of the phlegm. This was to be expected. The radiation had messed up the salivary gland which resulted in dry mouth. Her saliva became thick. She could not swallow the phlegm because it was so thick that it stuck to the throat like glue.
“Are you okay, love? Do you need anything?” She was coughing violently. Fahmi rubbed her back gently. God, she looked and felt so fragile that he was worried that he might hurt her. He could feel her back bone. Saffiya just nodded. He thought of the days when she was just out of the ICU. That was when the after effect of general anaesthesia started affecting her respiratory tract. There was a lot of phlegm and she was coughing and coughing trying to clear her throat but it was difficult because phlegm was too thick. So, the nurse had to suck the phlegm out using a suction machine. A straw like tube was inserted into the trachy hole through her throat into the trachea. And she would cough painfully until tears streamed down her cheeks. It was heart wrenching to watch. But it had to be done or she would not be able to breathe because the phlegm would block the windpipe.

But here, in their house, without the suction machine, the only way for her to get rid of it, was to use a piece of tissue wrapped around her forefinger and stick it into her mouth until it touched the phlegm. Then, she pulled out the tissue along with the phlegm that stuck to the tissue. This had become a nightly ritual for weeks and weeks after that. After her throat was clear, she took Fahmi's hand and kissed it and they held each other well into the night, wishing that morning would never come.

Tuesday, March 23, 2010

Being Handicapped

Hello everybody,

I know that I haven't been blogging for quite sometime. I'm still around and kicking. Just that things have been quite busy nowadays and not to mention plain laziness! Let's not forget that...

Something happened yesterday that triggered me to blog again. I heard in the news that unemployment level among the handicaps in Malaysia is quite high. Many of them are not self supportive and have to rely on others for their basic needs. These people have been trained to do a lot of things like handicrafts, cooking, sewing, typing and a lot of other skills, but still, remained unemployed.

One of the reasons discussed was that most of them are suffering from serious inferiority complex. They are just afraid to go out there to face the world. They don't have the confidence to face people with their crutches, wheelchairs or glass eyes. They can't stand the looks that they get from normal people. And its not uncommon for children to just point at them.

I, for one, can surely relate to them. I can just feel what they are feeling. Being handicapped you can tell yourself a thousand times that you can do what others can do. You are just like the rest. You are not alone in this world. There are many others who fare a lot worse than you. But, the fact remains....YOU ARE HANDICAPPED!! And just being handicapped, you tend to lose out and have to compromise a lot of things.

If you can rise above all that, and face the world with your head held high, I believe that you can survive anything under the sky...and hats off to you!

Friday, January 01, 2010

Happy New Year

Salam and hello again everybody,

The new year has just started. The curtains for 2009 has just fallen. Last year at this time, I put up my wishes for 2009. They were:

1. Be able to speak clearly.

2. Be able to enjoy food like before.

3. Be able to go for haj next year.

4. Be cancer free.

Up to now, I'd say two and a half of my wishes were granted. For the first wish, I've been told quite often that I sound a lot clearer than I did last year. I realise too, that I don't have to repeat myself that often any more. My family and friends can understand me almost perfectly, even over the phone. What about the second wish? Nope, not yet. I'm still relying on Peggy, the good old Peggy. This one, I don't know, maybe this wish is a bit unrealistic. However, I haven't given up hope yet, especially after reading DrSwill's blog Beyond The Glass Door on how far he has come after having total glossectomy about 2 years ago, I think. He is now able to enjoy anything on the table. And he even gobbled some slices of turkey on thanksgiving and a piece of mouthwatering steak on Christmas. Well, what do you know?? Miracles do happen!! Going for haj? Not yet, but I did go for umrah. For me, that's good enough because I really wanted to go to Mecca, the holy land. And lastly, being cancer free. Yes, I got that. I'd been cancer free through out 2009. What more could I ask for? For a cancer survivor, that's the best gift you can ever wish for. Life without cancer really makes life without a tongue sounds heavenly. Hey, your life or your tongue? I'd choose my life anytime.

Many people stricken with cancer claim that having cancer is the best thing that ever happens to them. They say that they are now closer to god, they have found love in the family and among friends and how much they appreciate little things in life. For me, you don't have to have cancer in order to be close to god or appreciate your close friends and family. You don't have to have cancer to make new friends. You can always pause for a few minutes in your busy schedule to reflect on what you are missing in your life or to appreciate how fortunate you are to be granted good health and to thank god for that. Just take a few minutes to ponder on the less fortunate people and how they struggle to survive. You don't have to wait for cancer to knock on your door to do all that because cancer really sucks!! Just be happy and thankful (bersyukur) that you are granted a good life while not forgetting the suffering ones.

I was watching Michael J. Fox the other day on Oprah show. He has been living with Parkinson for 18 years. His head and limbs were shaking almost all the time. Its amazing to see how normal he leads his life. When he played ice hockey, no one could tell that he's having Parkinson. He was asked about how he feels to be stared at by people every time he goes in public. He said that he can't afford to be affected by that and he has come to terms with the fact that it is something that he has to live with and it doesn't bother him anymore. And he is a celebrity!!

For 2010 and beyond, I wish that I'll continue to be cancer free, I'll be able to eat without a struggle, and be able to function as a non teaching teacher and I wish my dearest cyber friends, Pete, Brian and other cancer sufferers to have a very happy and cancer free year and remain so for many more years beyond 2010.

Pete and Brian, thank you very much for the constant flow of inspiring thoughts, emotional support and motivating words coming my way through out the year. Thank you also for sharing your bittersweet cancer journey with me. Hope this will continue for many, many years to come...

Happy New Year to all!

Bye, for now.


"Cancer sucks!!"