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..

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.....

Sharifah