THE TONGUELESS TALK-Battling Oral Cancer

Al-Fatihah...Goodbye, My Beloved Grandma

2012-02-11T12:41:00.000+08:00

My grandmother passed away at 8.20 am, 8 Feb 2012 after being bedridden for about four months at the age of 86. She was the woman who took care of my father after the death of her sister who was my father's mother. My real grandmother, that is, my father's real mother passed away when he was only 7 at a very young age. After that, my grandfather married the younger sister. So, as far as we are concerned, she was our grandmother.

She was a very healthy woman in her better days which spanned from birth up to four months ago. She very seldom got sick, not even having common cold like we often do. Never once was she warded, even during her childbirths which were 6 times. She was a very energetic lady. She would be the person calling the shots in almost every family events such as weddings, kenduri, or any other family gatherings.

Her cooking, yess, her masak lemak and gulai tempoyak is simply unparalled. What I remember most is her masak lemak cili api maman with ikan bilis...hmmmmm

BATTLE OF EMOTIONS

2012-02-09T09:32:00.000+08:00

The best line of defense in a war within yourself in the battle of emotions is NOT TO CARE. When you succeed in finetuning your system into an "I COULDN'T CARE LESS" attitude, you have actually installed a strong solid shield against the feeling of helplessness when it comes to matters of the heart....

Pregnant Fireman??

2011-12-25T18:07:00.002+08:00

21st Nov 2011 marked my forth year of leading a cancer free life. Being cancer free does not mean being free of the agony of the possibility of facing it all over again. Cancer has and always be at the back of my mind. However, that has not deterred me from enjoying life.

This morning I couldn’t help smiling to myself as a flash of an incident came to my mind as I was brushing my teeth. At the time, I was a bubbly English teacher. One of my students wrote about a pregnant fireman.

This was a part of what he wrote which was towards the end of his story:
The house was engulfed in flames and black smoke was smothering the onlookers. Every one was waiting in suspense. The fireman just rushed inside the burning house after the mother cried and screamed uncontrollably. Her baby was still inside. It happened so fast. The rescuers had to drag her out not realizing that the baby was still there.
Finally, at long last, everyone let out a sigh of relief, phuuuhhhh!!. The fireman came out, pregnant……..
I then called the boy and asked why he said the man was pregnant.
“Pregnant means carrying a baby, right teacher?”

Well, at least I know that I did a good job in the previous lesson on vocabulary, right????

BALI, INDONESIA

2011-12-05T11:50:00.000+08:00

Hi and salam,

I am now in Bali, Indonesia waiting for my sister in-law having her facial. I just had a foot massage..it was awesome… cost me just Rp55000 for an hour of massage which came to about RM20. Earlier on, we took a stroll down Kuta Beach. It is no wonder Bali is the place to be if you long for white sandy beach and crystal clear water. Oh…we have lots of beaches in Malaysia, but I would say that Bali is different. While we were there relaxing, there was an announcement, well, an instruction; to be exact directed to the snack and drink vendors on the beach to bring their garbage bags, garbage containers and rakes to the edge of the ocean and collect all the rubbish along the beach. And they willingly did it...which i think is just amazing..

A flash of pantai merdeka came into mind...the laksa and rojak stalls all over the place and rubbish scattered while the sellers just stay put waiting for the majlis people to clear the place...hmmmmmm

POLYGAMY? NO WAY!!!

2011-11-25T10:04:00.001+08:00

He goes out every nite and he meets the beautiful, young girl everytime..This has been going on for a long while. Her friends have been advising her to end the marriage because there's really no point in going on with it. Whenever confronted, he never gives her a straight answer.. denying, denying, denying...but she knows whats going on. Therefore, discussion is out. There's no end to it. She has lost her faith in him and has also lost her faith in the marriage. What kind of marriage life is this when he has his heart with the other woman? How can she perform her wifely duties sincerely with the blessings from Allah when her heart is full of hatred for him?

This other woman actually has a strong hold on him. Just by batting an eyelid, he would go crawling to her and be at her service. Its like 'your wish is my command!"

What should she do? Allow him to marry her and share him with the other woman? No way! Not that she's against polygamy...polygamy is ok as long as she's not the wife because she has a good, valid reason for it. Her health. If she contracts HIV from her husband who might have got it from this other woman, who's going to be responsible? Nope, she's not going to allow that to happen to her...husband sharing is just out of question.

Her health comes first!!!!

HABBATUS SAUDA

2011-11-02T14:12:00.001+08:00

This morning, as I was pouring my breakfast down my tube, I saw a documentary on Habbatus Sauda on TV. It was said that this special herb contains a huge amount of anti-oxidants, amino acids and those other stuff needed by our body to build up our immune system and provide the necessary nourishment.

Studies on the egyptian mummies also found that this herb was used on the corpses to preserve it.

Habbatus Sauda is also mentioned in the Al-Quran to be the cure for all diseases. It has been found that the use of oil can cure alzheimer, cancers, heart problems and even HIV and other immune related diseases.

When I was in Mecca in 2009 performing the Umrah, I also bought a kg of habbatus sauda which only cost me about RM20. I was told that the maximum amount of the herb is 7 bits per day and thats what I have been doing since then. If you take more than 7 bits, your body will get heated up..

SHE KNOWS

2011-11-01T15:20:00.000+08:00

He came back smiling sweetly and hugged her as though everything was as usual. As if his love for her never fades. As if she was the center of his being. How could it be possible when she knew that he was out last night to meet the girl. She also knew what they would do whenever they met. She always had this image of intimacy between him, her husband and her, the girl.

With that kind of image assaulting her mind, does he still expect her to perform her wifely duty sincerely whenever he had the urge?? Common man, she had feelings too, and she should not be treated as your sex object. You pounce on her like a hungry tiger and the next minute you are off to that girl without feeling a tiny bit of guilt. And the worst part is, SHE KNOWS!!!!

He's Gone

2011-10-24T14:14:00.001+08:00

“Dear, I don’t think I have much time left. I have throbbing pain all over my body. I can’t go through chemo any more. I can barely move now. I have a feeling that my time is up. The angel will be coming for me soon. Therefore, I just want to apologise to you should I had done anything wrong to you since the first time we got to know each other. Please forgive me. I feel blessed to be given the chance to get to know you and I think you are a really wonderful lady even though we have never met in person. I know that you have gone through so much and I greatly admire your patience and strength”.

Those were his last words. And now, he is gone following his wife who preceeded him a few years ago due to breast cancer. He died of lung cancer. I pray that his soul rests in peace and is placed among Allah’s chosen people.

Al-Fatihah

I'm ok...

2011-06-27T12:35:00.000+08:00

As salam to all,

Many of my readers are wondering what's going on with me because there has been no new posting for quite a while..yes, i do realize that...and i'm sorry. Wish i could provide a good reason for that but honestly i don't have one. Its just plain laziness..!!!

The thing is I'm doing very well. A few weeks ago I had a ct scan done and all is well..nothing peculiar came up. My doc was very happy and she said that I'm one of the lucky few oral cancer patients. Most oral cancer patients like me who were diagnosed around the same time have been long gone...al-fatihah for them..may their souls rest in peace and placed among those who are blessed by Allah.

Last month I attended a video training course organised by Panasonic Malaysia Kid's Witness News along with 2 students. It was fun. My students learnt a lot. Me, I was quiet most of the time. A bit skeptical to open my mouth. Not many participants were aware of my situation. Then, came the last day, where every teacher had to say something about the whole course. When, it was about to be my turn to speak, my student, Asif, offered to speak on my behalf. He said, "teacher, just write down what you want to say and I'll say it for u". Now, being his teacher, how could I let him do it for me. It was my pride, u see. My pride as a teacher. I thought to myself, heck...I've spoken in front of a bunch of doctors before. Why can't I do it now..So, I said, "No, Asif, I'll do it myself..hand me the mic, please. Thank you so much for being concerned".

Then, I took the mic and started speaking. I couldn't care less if they had a hard time understanding me. It was their problem, not mine. I told everyone what happened to me since 2008 and explained why I sound different. They said that they could understand me very well. And after that, some of them came to me and said how sorry they were about what I had gone through. I said that, I'm ok..thank God. I'm still thankful that I'm able to do things just like before despite what had happened.

And last week, I had the pleasure of training our school debate team which I never thought would happen. For a very long time, I had this feeling that such kind of thing is just out of my league...

Bye, for now, with lots of love,

Sharifah

Template Designer

2011-02-12T10:44:00.002+08:00

Dear All,

Need some help here. I'm trying to change the outlook of this blog. Been trying to fiddle around with the template designer but to no avail. Still can't figure out how to use it.

Can someone please help???

Thanks.

PEG ISSUE

2011-02-06T23:50:00.000+08:00

There I was, clutching my tummy in pain, waiting for my turn to see the doc. I’d been having some issues on my Peg for a few days. There had been some pain around the tummy area but it was bearable. But, this was crazy. Then, “Sharifah, exam room 135 please”.

I then dragged my feet into the room and asked to lie down. After briefing the doc on my source of pain, she pressed firmly on my tummy where the tube was, and “bushhhh”, out came the tube, along with some of my lunch. And like magic, the pain was totally gone. That was when I realized how fortunate I was …the tube could have come off when I was pouring down my lunch just a few hours earlier. And if that was the case, where would my food have gone to? The thought of it is enough to make me shiver….and my lips quiver. She then replaced the tube with something that looked like a rubber tubing to prevent the hole on my tummy from closing up.

Then, the good doc said that I had to be warded because she wanted to make sure that there was no infection and I was in good shape. So, I did what the doc said and spent the night in ward 7A, the same ward I was in after my surgeries way back in 2008. There were a few familiar faces when I was wheeled into the ward. One of the nurses said that I’m going to have a long life (panjang umur) because just minutes before my arrival at the ward, she mentioned to her colleagues about not seeing me for a very long time and she was wondering how I was doing. Hmm…talking about karma….

I had a good sleep that night after taking some milk through my mouth. In the morning, I showered and got into a fresh pair of hospital pajama and walked down to get some papers as I was restless. I was not prepared to spend the night at the ward. So, I did not bring my laptop along. An elderly lady, who was accompanying her daughter, commented on how energetic I was for someone who is on tube feeding. Her daughter, who was of the same age as me was going through chemo because she has lymphoma and was very weak because of it. So, I explained that I was there just to get my feeding tube replaced. I was not sick or anything like that….

A Good Friend

2011-01-17T11:04:00.000+08:00

I got this from somewhere....and I find it really touching...

If one day you feel like crying, call me
I don’t promise you that I’ll make you laugh
But, I’ll cry with you

If one day you want to run away
Don’t be afraid to call me
I don’t promise to ask you to stay
But I’ll run with you

If one day you don’t want to listen to anybody
Call me
I promise to be very quiet

But, if one day you call
And there is no answer,

Come fast to see me
Perhaps I need you

Thank you for always being there for me!!!

ps...don't we all long for a friend like this??????

My Tongueless Talk

2010-12-28T11:42:00.000+08:00

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

2010-12-20T12:54:00.000+08:00

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

Aspiring to Become a Novelist

2010-09-13T10:00:00.001+08:00

Salam,

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.

Listen to Sharifahsya love songs

2010-05-19T09:23:00.001+08:00

Being Handicapped

2010-03-23T14:21:00.002+08:00

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!

Happy New Year

2010-01-01T23:05:00.004+08:00

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.

Sharifah

"Cancer sucks!!"

What's Next?

2009-12-15T23:33:00.000+08:00

My vacation is almost over. Good days are almost over. I'll be going back to work in January 2010, on the 19th to be exact. I could go for medical board if I want to, in fact, thats what has been suggested by my doc considering the fact that I have a slurring speech and teaching is what I do.

Can I teach? Not likely. Can I work? Definitely. I'm good and efficient with my hands, fingers, legs and most importantly my brain, my mind, my thinking faculty. I can understand things perfectly and I'm just as alert as anybody else. So, it has been suggested by the officer in the District Education Department that I'll be sent back to my school as a non-teaching teacher....hahaha sounds good, eh? I can just see myself parked in front of a laptop doing teaching modules, surfing the internet, translation work, updating my blog, and so on.... pretty much what I'm doing now, and getting paid for that!! Well, the truth is, I still cannot imagine what sort of things I'll be doing. It all depends on my boss. It's going to be anything related to but other than teaching...I can't wait!!

It has now been almost two years I've survived being tongueless. It sounds terrible, but actually, life has been tolerable to me. I am leading an almost normal life except for the eating and speaking parts. It is hard at times. It can be troublesome at certain times. But, like they say no matter how difficult anything is, once you get used to it, once it becomes normal for you, it doesn't become a burden anymore. Nowadays, I don't have any craving for any food anymore. People eating my favourite food in front of me doesn't bother me anymore. I'm cool. Sometimes, when I speak, I even forget that I slur until they ask me to repeat to which I gladly do...and I'd repeat much, much more slowly without having that uneasy feeling anymore..

Bye, for now.

"Cancer Sucks"

Good Bye, Ananth

2009-12-01T12:19:00.001+08:00

Hello to all,

Another head and neck cancer warrior, Ananth Shenoy went to meet his maker on November 20th in his sleep after battling a fierce battle for almost 10 years. He was one of my cyber friends whom I befriended after I myself was hit by this unforgiving cancer. His passing saddens me to the core. He was constantly motivating, inspiring and had never lost for words when it comes to uplifting the spirits of fellow cancer survivors. I am one of those lucky people who had the opportunity to get to know him and whose lives he touched. When I underwent my second surgery in August last year, he wrote to the Mouth Cancer Foundation Forum informing everybody and asking everybody to pray for my recovery and when I did recover, he wrote to me and said that it was the best news he had ever got. How could you not like such a person even though you've never met? How could you not feel anything when such a person is gone? The world seems quiet without him.

We chatted through yahoo messenger several times. I talked to him about the shortcomings I face socially for being tongueless, about how people just look at you in a certain way once you start saying something and sometimes they just look the other way just because they have a hard time understanding you. Its as though trying to understand you is so hard and laborious and is such a waste of their precious time. We talked about having to resort to the PEG tube for food and how embarrassing it could be having to do it in public. And he never failed to make me feel good about myself again. He said that if others refuse to pause and try to understand what I have to say, then, its their loss because I have a lot of great ideas to share and I can understand perfectly what they have to share. In other words, I can enrich myself from them, but they can't.

He would use him own experience in the cancer journey to point out how fortunate I am compared to him, He said that he's willing to trade places with me anytime..

The last time I chatted with him he complained that he was in a lot of pain and was taking doses of morphine to numb the pain, And now, he's gone...and all that pain is over...

Rest in peace, Ananth. You are terribly missed!

Sharifah

A Cancer Warrior Is Gone

2009-11-15T00:26:00.002+08:00

Hello,

I just got news that a fellow cancer survivor, Robert Pemberton or Bob left this planet on 28th October after fighting a hard and long battle with tongue cancer. He was one of the followers of this blog. He sent his comments several times with his encouraging and kind words. His blog which is maintained by his wife Joyce is linked to mine. No words could express my feelings upon receiving the news. He was such a strong and caring man who accepted his fate bravely and calmly. This was expressed by Joyce so eloquently in their blog. And I’m sure his passing has hit her hard...but, I’m also sure that being a strong woman herself and with the support and love she’s getting from the people around her, and with the faith she’s holding on to, she’ll be okay.

I've learnt a lot from this great guy through his experience and how he emotionally handled this vicious enemy within his body. He was a man of faith. Yes, I totally agree with him. You have to have faith. I can’t imagine myself battling this disease without having any faith in God. I mean, who can you cling on? Having this disease means you are fighting your own battle. Not even your loved ones can do anything to curtail it. If it decides to invade your body, it will. You can cry all you want. You can run amok all you want. You can curse all you want. It won’t make any difference where cancer cells are concerned because cancer has a mind of its own.

The only thing we, cancer victims can do are to cling on to the love from our family and friends and of course, FAITH. Having faith in the Almighty helps me face this ordeal and reading Bob’s blog really helps me cope with my own emotion in accepting what has been planned and what are in store for me.

Anyway, I feel truly blessed that I’ve got the chance to get to know this great man.

Goodbye, comrade! Rest in peace.

Where Are Our Priorities, Ladies?

2009-11-08T12:34:00.002+08:00

Hello and salam to all,

I'm angry. I'm pissed. I'm steaming mad. I'm hopping mad. I just read about the increasing number of Malaysian women diagnosed with breast cancer. Most of them, got to know about their condition at a later stage which makes it almost impossible to save their lives. When asked why they were late in getting themselves checked, most of their answers would be they were scared to be told about the diagnosis and prognosis. They were especially scared that the doctor might decide to perform a mastectomy and as a result their husbands might just leave them for other women or just walk away.

My goodness!! I can sure understand and empathize with the feeling of helplessness or the fear of the disease. But being worried about losing a husband because you have breast cancer and therefore refuse to seek help for this deadly disease is just beyond me.... How could you put your health and wellbeing second to your husband?? If he leaves you because you have no breast, why worry about it? You have your life to worry about. And your children who are counting on you for that matter. If he leaves you because you have breast cancer, well, so what? He can go to hell...you have no use for such a husband.

Please love yourself first...if he decides to leave you, he would leave you no matter what. With or without breast cancer...

To my sisters, please take care of yourselves.. your health is the most important thing in your life.

Bye, for now.

"Cancer Sucks"

How Significant Are We?

2009-10-30T15:40:00.001+08:00

Salam again,

Last night, my thought lingered around my late aunt who passed on more than 20 years ago when I was studying the US. She had nerve cancer I think. It attacked her right thigh. It started with a pain on her thigh. She and every one else thought that it was because she was overweight and her weight strained her thigh. So, she went to the traditional medicine practitioner and he massaged her thigh. It didn't work. And her thigh became swollen. Then, she went to another one. She also went to the hospital. Nothing happened. And the swelling got worse. Finally, it got so huge and painful that she was unable to get up. Then, finally, she was taken to the Penang General Hospital where I stayed when I underwent my chemo and radio therapy treatments. When the doctor took the first look at her swollen thigh, he shook his head and right away ordered a biopsy and to everyone's dismay, it was confirmed stage IV cancer and there was little that could be done. Chemo was her only option.

That was long time ago. Chemo treatment was a lot harsher then. From what I heard from my mother, she would scream and writhe every time the chemo drug was injected into her vein and it was unbearable to watch her in such a pain. After a few injections of chemo drug, the doctor finally gave up and said that there was nothing that they could do and continuing with the treatment would only torture her without any positive outcome in sight. Then, her family took her home and she went to meet her maker a few weeks after that at the age of 36, al fatihah.

She is still remembered by those who were close to her. My mom would still be in tears whenever she talks about her sister. My mom said that at the time of her passing she was so frail and was down to half of her precancer size. I remember her as someone who is jovial, caring and warm. I could just walk into her house and tell her that I craved for this or that and voila! you can be sure for it to be on the table for the next meal.

After we die, how long will we be remembered? Or how will we be remembered? For most of us, ordinary people, me, in particular, if I were to leave this world now, I will most probably be vividly remembered by my husband, my children and friends for 5 years at the most. Hopefully my children will keep on praying for me through out their lives. My husband would most probably take up another wife in a snap. It will take much longer for my parents. After that, most probably life will just go on and everybody will be bogged down by their daily tasks and activities and very soon, I will just exist in a small compartment of their memories. And as for my childrens' children, I would be almost non-existent to them. As they say time heals all wounds. And thats the way it should. I mean I would not want people to mourn for me for too long. I want them to get on with their lives and pray for me whenever they can.

Why am I talking like this? Please don't get me wrong. I'm not planning to die just yet. I'm just thinking of how insignificant we all are..I mean let's face it, how many of us are Michael Jacksons? Elvis Presleys? P.Ramlees? or great Philosophers or world leaders? These people are remembered generations after generations for their great achievements. However, people like Hitler are also remembered generations after generations for different reasons.

For the rest of us, after we are gone, we will only be remembered by people from our present or perhaps the next generation only. After that, it would be as if we never existed in this world...

Bye, for now.

May my aunt rest in peace and her soul embraced in Allah's love and mercy. Amin

"Cancer Sucks!"

Mecca

2009-10-03T16:53:00.005+08:00

The day for me to leave for Mecca finally arrived. I was very excited and looking forward to the trip. I went with a friend. I was still on tube feeding meaning that I took in my food through a stomach tube which was inserted directly into my stomach. It was quite troublesome when you are on a long journey. And it was a long journey. The flight from Penang to Jeddah took 12 hours. I could only take water and light soup in that 12 hour flight. It was on Friday, August 21st. When we reached Jeddah, we were stuck at the Immigration for 5 hours and I still could not get any food into my hungry tummy.

After getting through the immigration, we hopped into a bus which took us on another 5 hour journey to Medina. I could only manage to put in a glass of fruit juice into my stomach on the bus. We reached Medina after dawn. Then, we got into our rooms. It was the first day of Ramadan and I made a big mistake fasting. I still felt okay and amazed at myself at how well my body tolerated the hunger pangs. On that day itself, along with a few others, I walked to the Nabawi Mosque to pray. Wow, the mosque was really breathtaking. I can't even begin to describe it. We visited the tombs of Prophet Muhammad s.a.w. and his friends; Saidina Abu Bakar As-Siddiq and Saidina Umar Al-Khattab, and prayed for them. I was doing fine until the time for iftar. No problem and I even bragged about it.

On the second night, we were off to Mecca to perform the umrah. We had to put on our ihram attire meaning that the clothes will have to cover the whole body except the face and palms. We had to put a head scarf as well to cover up our hair. There are also certain restrictions that need to be observed when you are in ihram attire or your umrah would be nullified.

On the way to Mecca, we stopped at Bir Ali for the ihram sunnah prayer and to express our intention for ihram. Then, we headed straight to Mecca, stopping on the way for subuh prayer. When we reached Mecca, it was already about 9 am and it was scorching hot. We were given our rooms and instructed to come down at about 11 am to do the tawaf and saie at the Masjidil Haram. We walked into Masjidil Haram through the Babussalam entrance. Thats the entrance used by Prophet Muhammad when he entered the mosque. We headed straight to the Kaabah to perform the tawaf. When I looked at the Kaabah I was overwhelmed by emotion. This is the qiblat for our daily prayers. Meaning that this is the direction we face when we perform our prayers. And here I am, feeling very fortunate to be given the chance to look at it for real, with my own two eyes. I felt so small in front of Allah.

I took the opportunity to pray for my good health, good life, my family, my parents, friends and other cancer sufferers.

The tawaf, amazingly was not that tiring. Fortunately, there were not too many people. Probably because it was just the first week of Ramadan. I managed to touch the Hijir Ismail and kept on praying until we completed the seven rounds of tawaf. Then, we were set for the saie where we have to walk or brisk walk to and from Safa and Marwah 7 times. This is to emulate what Siti Hajar did looking for water when her son the Prophet Ismail was crying of thirst at Marwah. I felt so weak and tired after the 4th trip and thought that I would pass out. I prayed to Allah to give me the strength to complete the saie. At the same time, I was thinking of Siti Hajar running to and from the Safa and Marwah under the hot sun, barefoot on the dessert gravel and sand. That thought really kept me going and finally I managed to complete the saie.

On the next day, I went to do another round of tawaf and saie. Managed to perform the terrawih prayers in Masjidil Haram. Alhamdulillah. However, that night I was hit with a severe waves of diarrhea and nausea. I had very bad stomach ache. The next morning I started throwing up and I could not fast. By afternoon, I started throwing up tea-like liquid. It could be blood from my stomach. Then, I could not stand it anymore and requested to be taken to the hospital.

I was worried that my cancer might have attacked my stomach. At the hospital, the doctor did a blood test and infused 2 pints of saline. Alhamdulillah the test came back ok. My blood was alright. The doctor suspected that I've got a very mild ulcer. Probably due to the long hours I went without food on the long journey. He prescribed some medication and I've been alright since then. And everything was just smoothsailing after that.

What Do We Teach Our Children?

2009-09-22T20:10:00.003+08:00

In many cultures, politeness is of utmost importance, especially among children. In inculcating such values to the children, parents often scare the children by saying things like, "if you like to curse, or say bad things to others or simply being rude to others, one day god will cut your tongue off". Another tendency is to tell the children that if they stick their tongues out to others, god will also cut their tongues off. We hope that by saying so, children will hold their tongues and not embarrass you in front of friends or stranger.

One day, an old friend, along with her niece came to visit me. With my slurring speech, we talked about a lot of things. Her niece was watching me intently, probably wondering why I slurred. Then, she blurted out, "Pasal apa makcik cakap macam tu?" or "Why are you talking like that?". So, my friend explained that I had no tongue. She asked why. My friend explained again that my tongue was diseased and the doctor had to cut it off. Then, the talkative 3 year old girl asked again, "Makcik dulu suka maki orang ka?" or "Did you like to curse others?". There you go. It hit me hard because this is what most of us tend to teach our children. We tend to take the shortcut instead of explaining to them that cursing people is just plain rude and rude people will not have many friends. My friend was so embarrassed and apologised to me profusely. How should you answer that innocent child? After all, that's what the adults have been hammering into her head all these years! Then, I said that its ok because its not her fault. I was sincere.

Fortunately, none of my three children are that talkative. Whenever they are curious about someone, they would wait until we are alone and ask. That gives me a chance to explain to them properly. Even in my case, they just accept me as I am and I have no problem communicating with them about my current physical condition. Alhamdulillah.

Long after that, my friend called again to apologise should her beloved niece offended me in any way. I said that I am beyond care about how people see me or what they think about the way I look or the way I speak. I went on to say that I can't afford to be offended because if I do, I can't survive and I am not about to surrender to such things. I just have to face it. And now, I can really empathize with those physically handicapped people and how tough it is just to be looked upon and treated like normal people. And to make matters worse, some people would just say to you point blank that you are being punished for something bad that you have done in the past.....

I would like to take this opportunity to wish the muslims Selamat Hari Raya and may this eid be a joyous one for all.

Sorry, I'm supposed to talk about my trip to Mecca recently. However, I got sidetracked by this issue about education our children. Next entry, I promise.

Bye, for now.

Sharifah
"Canccer Sucks"

Career Change

2009-09-09T09:21:00.000+08:00

Salam to all,

I know that I haven't updated my blog for quite a while. You know what they say, no news is good news? Well, in my case, that is true. The good news is that I'm doing just fine. I feel fine and life is just great.

I've been quite busy these past few weeks. After I went for my follow up last month, I attended a course in translation. Since there's a very slim probability of me going back to teaching like those pre cancer days, I decided to make a turn in my career into translation work. So, I attended the translation course in Institut Terjemahan Negara in Kuala Lumpur. The course went on for about 2 weeks. It was a rather enlightening experience.

I was quite nervous at first because I did not know what to expect from strangers (coursemates) considering my slurring speech. I didn't want their pity. What if they could not understand me?

Well, after the first day went by, I realised that all that worries were for nothing. Everyone was wonderful. I could converse just as normal as everybody else even though I sounded different. Unique. I commanded full attention from others since they had to really listen carefully to what I had to say..hahaha or else it would have been their loss...

The course was over on 1st August. And I flew back to Kedah. Then, I got busy with the translation projects I have been getting from a dear friend continuously (god bless him) up to the time to leave for Mecca to perform Umrah. I left for Mecca on the 21st of August. So, you see, I've been on my toes and could not find the time to update this blog. However, I read the comments coming in wholeheatedly and guiltily. Thank you so much for keeping me in your thoughts.

I'll be talking about my trip to Mecca in my next entry.

Bye, for now

"Cancer Sucks"

Update

2009-07-15T10:21:00.002+08:00

Assalamualaikum my friends,

When I walked into the doctor's office the other day for my follow up, he was so happy to see me because I'd put on weight. In two months, my weight had increased by 3 kg. I am proud to say that my weight is now 48 kg, even more than it was before cancer.

He checked inside my mouth and declared that everything looks ok. However, he also said that I have to be on the look out all the time for any change at all in the oral cavity because should there be any recurrence, they would want to catch it as early as possible. He went on and said that from his experience, for a young patient like me with no risk factor, a lot of time, a recurrence results in losing the battle. It seems that there nothing we can do to prevent the recurrence. So, what should I do now? Just wait for the time??

Ouch! ..that was like a smack in the face. After a few seconds, I thought to myself, well, if its time to go, you go. But before the time comes, before my time is up, there are a lot of things I can do. Thinking about it is also useless and a waste of time. Life goes on.

Oh yes, I am going to finish up the book I've started writing. And maybe do some travelling. Why not? I am not bedridden. Hey, life is great..

Bye, for now.

"Always stay awake because cancer never sleeps"

Latest Follow-up

2009-07-08T10:42:00.005+08:00

Waiting for my turn in the ENT department.

Salam and hello to all,

I am now at the Sultanah Bahiyah Hospital in Alor Star, waiting for my turn to see the doctor for my follow up. Upon registering, I was given my calling number, 865. And the doctor is now seeing a patient whose number is 825. Phooh! 40 patients to go before my turn.

Well, from past experience, I expected this to happen. So, I made sure I brought along my laptop. So, here I am at the ENT department.

I'll keep you updated on the follow up.

Bye, for now.

"Always stay awake because cancer never sleeps"

Friends

2009-06-29T22:08:00.001+08:00

Hello,

Oral cancer takes away a lot of your life if you survive. Your ability to speak and therefore to perform in your job, socialise, eat, and to a certain extend your friends and even spouses. This is the time that you are lucky enough to find out who your friends really are. Some survivors are really blessed with people around them who truly care and go out of their way to make life easier and more meaningful. Some are also fortunate to make new friends, friends that they had never met pre cancer who come forward to offer help in every way selflessly and unconditionally. I find it truly amazing that there are actually many people out there who would just extend their hands whenever you need help. All you have to do is ask and they are there.

However, there are also friends who would just shy away from you, not because they don't like you anymore, but just that they are probably afraid that they might be saying the wrong thing and end up offending you. In my case, my slurring speech sometimes scare people off from talking to me. When they can't make out what I say, they would be very apologetic, for making me repeat it a few times. I do not blame them at all because I am aware how I sound like. I speak with an "accent" and I am not offended.

Since losing my tongue, I am not as talkative as before, especially with people who are not used to the way I speak now. Not to say that I am embarrassed with my condition now but I don't want to embarrass them for not understanding what I say. You see, some people would go to the extent of pretending that they know what I’m saying just to avoid an uncomfortable situation. And I hate making anyone feel uncomfortable around me.

Usually, when I say a word that is not understood, I would try to find other ways of saying it. For instance, I had a telephone conversation with a friend this morning. I told her that my medical leave would be over in January 09. I pronounced the word medical, “mae-i-al” because I could not produce the /d/ and /k/ sounds. Then, she asked, “what?” . So, I knew that she could not figure that word out. So, I said, “Oh..I have to go back to work in February next year.” Then, she responded by saying that its great that I would be working soon.

However, one good thing that has come out from this is that, my writing has improved tremendously since I have to rely on my writing more than before to express my thoughts.

Its just great to be alive!

Cheers!

Being Mortal

2009-06-26T12:59:00.002+08:00

Michael Jackson died today. Michael died of cardiac arrest as reported online. Who has given it a thought that the seemingly invincible King of Pop would die at 50? When he was in the midst of making a come back?

So did Farrah Fawcett. And Farrah died of cancer after battling it since 2006 when she was first diagnosed. In the program "Farrah Story", she mentioned that she was aware that everybody dies but she didn't want to die of cancer. But then, really, what choice we mortals have about how we die? or how or where we were born for that matter? The only choice we have is how we live our lives.

Many people asked me whether I have thought about my own death. My answer is yes, but I don't dwell on it because death is something we have no control of. When the time comes for you to go, you go, no matter what. Thinking about it would not make any difference and would not change the situation in any way.

Having cancer does not mean I'll die any sooner than others who are cancer free. Since embracing cancer, in 2008, I've seen many perfectly healthy people around me who have passed on. And so have others who were afflicted with other types of diseases like diabetes, heart disease, dengue, and now, we are faced with another life threatening issue, the H1N1 or the swine flu.

I've just read about an Australian cancer survivor lady who has just died of H1N1. She did not even die of cancer. The problem with cancer survivors is that their immune systems have been compromised because of the harsh treatments that they have gone through. This makes them susceptible to germs and virus.

So, bearing that in mind, I'd really have to be extra careful in maintaining hygiene and also in socialising in public places. Well, that shouldn't be too hard because since having slurring speech, I have cut down on socialising quite significantly.

Bye, for now.

"Never stop fighting"

The Brighter Side

2009-06-18T08:53:00.002+08:00

Recently, I went for a movie "Angels and Demons". There was a dialogue uttered by Tom Hanks which really got me into a reflective mode about my own faith. The dialogue went something like this...

The Padre asked Tom Hanks: "Do you have faith in God?"

And answered by Tom: "Faith is a gift which I have yet to receive".

Since my cancer journey started, having faith in God has been a cliche whenever friends and relatives who come to visit try to say something comforting to me or whenever they text me or email me. It is a very good advice and I do accept and thank them wholeheartedly. What I'm trying to say is that, having faith in the almighty really helps me going the rough times. In that sense, I consider myself fortunate that I have received this gift, I mean I would really like to believe that I have this faith in me. However, is this gift big and strong enough for me to sail through the sea of the future which is full of uncertainties and turbulence? With cancer, you really don't know which direction this horrible journey will take you to. You just have no choice but to have faith that God is there for you no matter what. Or else you will feel really helpless and that you are all alone fighting your own battle.

It is very common for cancer survivors to say that having cancer is a blessing in its own way. I think looking at your fate that way really helps in coping with the horrible reality of having cancer. You try your level best to grope in the darkness of cancer to find just a ray of light and somehow find a way to expand it into a beam. Hence, you often come across cancer survivors saying things like having more friends, being closer to god, and experiencing a lot of love flowing around them, and the likes. We, cancer survivors really have no choice but to imagine ourselves being in a bright light no matter how dim the light may be.. just to keep our sanity!

Bye, for now.
"Faith is not something to be taken for granted"

Soul Mates

2009-06-14T12:58:00.002+08:00

Hello everyone,
Cancer, cancer everywhere. Seems that almost everybody has cancer. I mean
cancer seems to be just a common issue. Like getting common cold or flu. Its like, you have cancer? So what? So does everybody.

I was looking through this website by Dennis Pyritz. He is doing a wonderful job compiling the cancer blogs on the net. My blog is also in it. And there are so many of them categorised according to the types of cancers ranging from breast cancer (the most popular) up to prostate cancer. Fantastic. Most of these blogs details the heartwrenching experience of the survivors and their caregivers going through the cancer journey. Many have gone from this planet (prayers for them) leaving a big hole in the lives of their loved ones and many have survived more than 5 years. Bravo!

The fortunate survivors have their soul mates by their sides all the way fussing over the doctor's appointments, meals, calories, pain medications, visitors and so many other issues that have to be dealt with. These soul mates would be holding their hands and hugging them when things are down and cry happy tears when the future looks bright. However, there are also many who have to go through it all on their own. Single mothers afflicted with breast cancers, men and women who are just left by their spouses to struggle on their own emotionally and physically, because like I mentioned before cancer takes a long time to heal and the healing journey can be real rough and the spouses might just get tired of the sickness. More often than not, for these cancer survivors, especially oral cancers, life is not the same anymore and the life partners have to make a lot of adjustments which many may not be willing to do it. I am not sure which one is worse; the emotional trauma of having cancer or the physical suffering.

To the unfortunate survivors who have to survive without their soul mates to share their sorrows, I would like to say that its not the end of the world and you can and will survive even stronger....believe me!

The Cancer Caregivers

2009-05-21T21:56:00.002+08:00

Assalamualaikum and salam,

All this while I’ve been talking about me and other cancer survivors dancing with cancer and living with it. I’ve only touched a little on other people who are also affected by it; for instance the family and friends who are constantly bracing themselves for the high possibility of the inevitable (recurrence or even death). These people are also greatly affected by cancer. I have always admired the resilience and patience possessed by the caregivers, particularly women for being there and being alert for the chronic cancer patients around the clock. I am sure it’s no easy task taking care of cancer patients especially those who are bedridden and need assistance in doing even such simple tasks like eating. Usually, people who are hit hard by cancer to the point of being helpless are frustrated for not being able to do the things that they are so used to everyday almost without batting an eyelid. They often get cranky, short tempered and agitated and taking care of them can be a real battle. This can really drive the caregivers up the wall. A lot of time the caregivers just give and walk away.

When you are hit with diseases such as cancer which takes months of treatments and healing, your spouses are also greatly affected. We hear a lot of cases where cancer really put a strain on relationships and this is a trying time for many couples. This is because most cancer patients especially oral cancer are not the same anymore. They are not as sociable as before and many suffer from inferiority complex and they just shy away from public. The talkative ones become quiet for fear of being embarassed when they are stared at everytime they speak or eat in public. Many spouses would just crumble and start to look for new partners who are able to fill the gap. The lucky cancer sufferers like the late Trev and Paul from the Mouth Cancer Foundation, Robert Pemberton, and Ron are blessed with their wives taking care of them patiently, lovingly and tirelessly. These caregivers would fight cancer like hell along with their husbands. They have my utmost respect for being the unsung heroes. I can’t imagine all those nightmares, the constant fear of losing their husbands, the uncertainties and the suspense that they are going through. I wonder where they got their strength. And yet, they are there no matter what….

Cheers, to the caregivers! You are great...

Bye, for now.

Sharifah

"Never stop fighting"

What's next?

2009-05-17T08:58:00.001+08:00

Hi again,

I went for my follow up appointment last Monday. The doc was really happy with my progress. My weight has increased to 45 kg from 44 kg last month. Things are really looking good so far. While waiting for my turn, a doctor came by and asked how things were to which I responded all was well. She then told me that she read about what I’ve gone through in a magazine. ( Al-Islam magazine, Apr issue) Yea, forgot to blog about that. These folks from the Al-Islam magazine stumbled upon my blog and contacted me and asked for my permission to publish my story in the magazine. So, I gave my okay because the whole idea is to share my experience because like I said earlier, oral cancer is among the deadliest types of cancer but not widely known. Many people think that when you are young, don’t smoke, don’t drink or don’t chew betel leaves, you are ruled out from getting oral cancer. Well, cancer has a mind of its own….

My two year full pay cancer vacation (leave) has been approved. The approved holiday started on 1st Jan 2008 and will end on the 1st Jan 2010. So, that gives me another 7 months of vacation. What will I do by then? Teaching, no, does not look promising with my slurring speech. The thing is I kind of enjoy being a full time housewife and mother without having to burden my mind with the schoolwork which can be very, very demanding. When I look back, I can’t imagine how I could tolerate the stress from a teaching job for 17 years; teaching 6 periods a day (means walking from one side to the other side of the building or climbing up and down 3 to 4 floors 2 or 3 times daily), having to write record book every day, attending meetings endlessly, students’ discipline problems and not to mention the ever increasing workload. I think teaching is a messy job because you have to please a lot of parties; students, colleagues, parents, administration, etc, etc Could that be a reason for me getting the cancer?? I was told by a nurse the other day, that many cancer patients nowadays are teachers …hmm

Bye, for now.

"Never stop fighting"

Cooking Challenge

2009-05-02T16:02:00.001+08:00

Salam and hello again,

Nowadays, for some reason I just love to cook for my family. When I see them gobbling my cooking, it gives me a weird sense of satisfaction. And the thing is I can’t even taste my own cooking and therefore I have no idea how good or horrible it tastes like. Whenever I ask my kids for feedback, they always say that it’s delicious. Maybe they think that saying otherwise would just end my cooking activities. So, I guess the only way to evaluate my cooking is to see whether they finish their food and how much they eat.

My darling youngest son, is forever, taking great care not to offend me. He would always say that whatever I cook is delicious. But, quite often I notice some leftovers on his plate. So, I know where I stand in the cooking department…haha

The best way to make sure there would be no food wastage is to cook and serve when they are really famished. Hungry people are not choosy!

Well, that’s for my family. What about me? My food mainly consists of ensure milk blended with a slice of wholemeal bread. Other than that, rice porridge mixed with celery, cauliflower, or broccoli and some fish. Sometimes I would also add carrot or potato. All these are taken through Peggy. I am trying to take some orally as well. So far, with little success.

Will keep trying. I’ve been partly motivated by a fellow tongue cancer survivor Brian.

Bye, for now

“Never stop fighting”

Meals

2009-04-28T09:58:00.003+08:00

Hello all,

Having Miss Peggy with is not without its perks. For one, it enables me to take in the types of food (like beetroot, fresh ginger, gochi, apricot seeds etc) that I would not have otherwise. Furthermore, I don’t have to take forever cleaning my mouth after each meal. The only thing that I have to monitor is the possibility of having caries on my teeth because of lack of saliva.

I’ve been asked by many people how it’s like ‘eating’ through peggy and whether I have the cravings for solid foods. Well, you get the fullness sensation just like eating normally minus the taste. Do I miss enjoying my favourite food? You bet, I do! And whenever I have the craving for my favourite food, I quickly pour my meal into my stomach until I feel full. Then the craving diminishes in a snap. That’s how I deal with my cravings. The whole process takes only 5 minutes. Cool, eh?

I just read Dr Hasanah’s latest entry about juice fasting because she said that her lymph nodes are talking. I sure hope that her effort will yield satisfactory results. Maybe I should do that too. Shouldn’t be hard for me since my Peggy is here to stay..haha

Bye, for now.

"Never stop fighting"

A Time to Reflect

2009-04-17T17:23:00.003+08:00

Salam and hello to all,

I have just read a blog about a tongue cancer survivor who also had a total glossectomy (the whole tongue removed) at around the same time I did. This blog is written by his caring and loving wife who has been by his side all this while and attending and supporting him tirelessly. He inspires and humbles me with his endurance and his positive outlook in life. I admire the fact that he never complains about his inability to do a lot of things he used to pre cancer and his absolute faith in God. Reading through the blog, I realised that he has gone through a lot worse than I have and yet he doesn't complain. What a guy! His blog is linked to this blog via The Florida Real Estate Robert Pemberton on the left panel.

I guess I have been quite fortunate in the sense that I have been spared from the things that he had to go through such as the gaping hole which oozes liquid and stuff. And I haven’t experience that much pain to the extent of having to use the painkillers consistently over a long time. Really, I don’t have a lot to whine about and yet…I do at times especially when I see people indulging in their food without a care. And I do whine when I am left at home with the children most of the time. No, no, I shouldn’t when I have a lot more to thank for.

Bye, for now.
Sharifah

I'm alright!

2009-04-15T09:30:00.000+08:00

Hello everyone,

This morning I went for my follow up appointment. Glad to tell you that things are looking great. The last time I went, the doctor did a biopsy because I had a slight bleeding from my flap. The results came back negative. Yay! Since I had my peggy, my weight has increased by 3 kg. I now weigh 44 kg. My next appointment is May 11th. My doctor said that they want to monitor my condition closely because the cancer that I had is really aggressive. So, should it decide to come back, hopefully they’ll be able to catch it early enough. Well, I’m all for it.

On the 6th of April, I went for a follow up appointment with my oncologist. I was given a clean bill of health. While waiting for my turn, I noticed an year old girl with her mum. I heard her mum telling a lady that her daughter has brain cancer and she had gone through the radiotherapy and chemotherapy. What amazed me was that this girl did not look sick at all. She was happily chattering away…My heart really went to the mother. She must be going through hell. I think being a caregiver to child with cancer is even worse than being a patient. I don’t think I could handle myself if one of my children has to suffer from this dreadful disease.

Bye, for now

Living in the World of Cancer

2009-03-31T16:06:00.000+08:00

Hello all,

March 19 marked one year of me in the World of Cancer. On that date last year, I was sitting on the dentist chair in the Hospital Sultan Abdul Halim, listening numbly to the oral surgeon telling me that the lump in my tongue was cancerous and I had to be referred to the ENT specialist. Then, the rest is history. On April 16, I will be celebrating my first anniversary for being tongueless. What an eventful year it was! And yet, I am still in one piece….Alhamdulillah…

Being in the World of Cancer, you don’t usually think in long term. You live by the day. Everyday is a blessing. Everyday is a gift. In my new world, people talk about 5 year survival. If you survive up to the fifth year, it is considered a huge success and definitely calls for a huge celebration. I still have a long way to go…I need to go through 4 more anniversaries to hit that 5 year mark. Another thing about being in this privileged world, when you meet your comrade for the first time, you don’t ask “How are you doing?” but rather “What type of cancer have you got?”. The next question would probably be “How long?”. Normally we recognize each other from their thinning hair or skinny body and if they are strangers to you, you just nod understandingly. It’s easier to recognize an oral cancer survivor because of the way they talk and the way they eat or drink. This is because of the slurring speech and when they eat they have to tilt their heads a bit so as to push the food to the throat. For a muslim breast cancer survivor, it’s a bit more difficult because they wear the head scarve (tudung).

Many people say that I am a very strong person for I don’t look sad or depressed. I haven’t changed much, they say. Whenever, they tell me a good joke I would laugh heartily. In short, they say that strangers would not be able to tell/guess what I have gone through. Am I worried? Am I sad? Of course I am. I am just human. But, I won’t let the worries and sadness consume me. Life goes on.

Well, you see, I have cancer. So what? That doesn’t stop the sun from rising and shining. People don’t quit their jobs because of that. The world still goes round. Nothing in the world would pause and wait for me. So, as long as I am still granted the ability to move around, laugh, eat, be understood, and use my mental faculties as well as before entering the cancer world, I have no reason to brood in self pity…..

Bye, for now.
Sharifah

Down the Memory Lane

2009-03-14T17:35:00.003+08:00

Recently, I was just browsing some pictures and came across this one. This is a picure of me and my students when we became the national champion in the Youth Research in ICT competition jointly organised by the Sunway College Kuala Lumpur and the Ministry of Education in Sept 2006. The students are Hadi Imran, Lydia and Marcella. They worked very, very hard for the competition and we managed to really impressed the judges. Now, they are pursuing a higher education and I wish them a great succcess.

Looking at the picture, who would have thought that I would be afflicted with oral cancer about a year after that? I was really beaming with pride and hope....

And this is me when I was busy at work without a slightest thought that I would be tested with cancer.

Well, those are now history and the chapter on that part of me is closed. Now, moving on to a new chapter.....

Adjusting to A New Normal

2009-03-01T18:02:00.003+08:00

Hello,
In consoling a cancer patient, many people will compare dying of cancer to dying of accident. They will say something like this: Everybody will die, we just don’t know when and how. Some healthy people might die of accident.

To me, dying of accident and dying of cancer is different. Accident does not follow you around. You don’t think about it all the time. You don’t have to be on strict diet or change your lifestyle. If you survive an accident, its all behind you and you can get on with your life even if you have to adjust to a new normal. With cancer, its different. Surviving cancer means being worried all the time that cancer might come back to haunt you! Many people would advise cancer survivors not to think about it but as pointed out by a friend who is also an oral cancer survivor, it is like asking us to ignore an elephant which is standing right in front of you. And I would say, being struck with cancer particularly oral cancer, a big chunk of life is compromised. Life will never be the same again. You’ll have to accept and live with a new normal for the rest of your life. A new normal for an oral cancer patient like me would be slurring speech, fruits and vegetable diet, and developing a whole new concept of eating. Eat to live or live to eat? Obviously for me along with my miss Peggy it would be the former. Eat to keep on surviving… I mean dying is not in my plan unless it is time for me to go.

In Malaysia, unlike breast cancer, oral cancer is still foreign to many people. Take my housing area for instance, out of 5 cancer cases, 4 are breast cancer. I guess that’s why there is not enough effort to support oral cancer survivors to get on with their life. Speech, eating and swallowing therapies are not given to survivors on a regular basis. A lot of things depend solely on the patients themselves. Being tongueless, I have to figure out myself how to maneuver food into the throat or how to make myself more understandable. Sometimes, its hard especially over the phone. Besides that, I depend a lot on fellow survivors on the Mouth Cancer Forum and the Oral Cancer Forum for information on various issues after finishing surgeries and treatments. These are the information such as neck exercises, what to expect throughout radiotherapy and chemotherapy and what can be done to improve utterances which I have not been able to get from the doctors and nurses. Reading through the profiles of the members, I can safely say that I am the only Malaysian member.

This morning, I went to a shop that I used to go before I was blessed with cancer. The lady who owns the shop remarked that I'd lost so much weight. I said that I am now slowly gaining my weight and on liquid diet. Then, she said that I used to be really talkative. Well, I said this is the new me having to lead a new normal life. I am still talkative but in a different way. I am pretty much the same person...

I know that I can never get back 100% percent of what I had before. However, getting back 80% of it is good enough for me. If in the long run I can get another 10%, then, I consider that as a bonus....

Bye, for now.

"Life is too short, but intend to grow old gracefully"

MISS PEGGY (PEG TUBE)

2009-02-18T20:53:00.001+08:00

Salam and hello,

I finally got that PEG tube fitted. It was done under LA (Local Anaesthesia).. The same procedure like before was done but this time the surgeon was aware of my breathing problem. He gave me a mild sedative and then inserted the endoscope down my throat. It was really scary but I did not panic because he kept on talking to me. When he realized that I was short of breath, he quickly numbed me and punctured my stomach wall and and abdomen. Then, he quickly pulled the endoscope out and fitted the tube. Phew!

After the surgery, the nurse pumped in 50 ml of water every 3 hours. That night, I vomited the liquid plus blood twice. Fortunately, I was ok on the next day or else, the doc was going to shove the endoscope down my throat again to have a look inside my stomach.

I am so glad that it was over and now I can take my nutrients through the tube. I am hoping to get my weight back soon.

I’ve been using my PEG for 2 weeks now. Its really great because I’m really putting on weight. I’m only taking plain water orally. I feel a lot more comfortable using this “Peggy”. Now, I don’t have to struggle all the time to gargle to keep my mouth clean. With Peggy stuck to the stomach, I must have my meals regularly because otherwise, I would feel a strong stomach cramp.

Many are wondering why I decided to have Peggy since I don’t really have any problem swallowing liquid food. Well, taking food orally is actually quite torturing because I cannot taste anything. Chicken or fish soups taste bitter to me. Most food is just plain tasteless. So, I thought why torture myself since I can’t enjoy the food anyway. I might as well take the food directly into the stomach and get the full sensation just like taking it orally.

My saliva is still very thick but not as much as before. This thick saliva would stick to the inside of my mouth especially the roof and teeth. When I drink water, the water would not reach the roof of my mouth because my tongue cannot swirl it around the mouth. So, the saliva would dry out and cement itself to the roof. Then, I have to reach the roof using my finger and peel off the layer of saliva. However, its much better than the thick, stringy saliva I had before...

All in all, I feel much stronger and better now. Alhamdulillah.

Bye, for now.

"Life is too short, but intend to grow old gracefully"

Fighting Cancer

2009-02-04T18:21:00.002+08:00

Hello everyone,

I’ve been reading through Shin’s posts in her blog since the day she was diagnosed for breast cancer up to the day she died. It seems to me that we absolutely have no control over the disease. Shin had done everything necessary to avoid a recurrence but to no avail. She changed her diet totally, took up exercises (boat paddling and jogging), had a very positive outlook towards life and she did not sulk about her cancer. Her cancer returned a year after treatments with a vengeance. It was stage IV. She fought the disease until her last breath. Her final entry was on Jan 17 09 and she passed away on Jan 27 09. It is really depressing to read about how much a person suffer from this dreadful disease.

I’ve been also reading quite a lot on cancer cells and what you should do when you are diagnosed with cancer and also how to avoid cancer. Your diet should consist mainly of fruits and vegetables, preferably raw. There are quite a number of websites which advocate consuming raw vegetables which contain anti-cancer properties such as broccoli, cabbage, cauliflower, celery and cucumber. Another thing is that you must complement the diet with enough exercise preferable in the morning because exercises promotes deep breathing and your body will get a lot of oxygen. Cancer cells cannot survive in oxygenated environment.

The thing is, there are so many theories and ideas about cancer. In my case, oral cancer is said to be caused by smoking, drinking and betel leave and nut chewing. I don’t fall in any of the categories and yet, I am struck with oral cancer. And there are people who smoke like a chimney and live healthily up to old age. The same goes to other types of cancer. There are so many factors that come into the picture.

For a person like Shin who did everything suggested where cancer is concerned, it is
really mind boggling when cancer returned anyway and consumed her at last. I suppose there is really no hard and fast rule. We just try our best to fight, do a lot of research to get as much information as possible, learn from other survivors, change our lifestyle and pray hard and hope for the best. Then, leave the rest to the Almighty.

May Shin rest in peace.

Bye, for now.

“Life is full of uncertainties”

PEG Fitting

2009-01-23T19:38:00.003+08:00

Salam from Hospital Sultanah Bahiyah,

When I came for follow-up, the doctor was very happy because my weight had not gone down. I've been maintaining my weight at 41 kg. However, she suggested getting a PEG tube fitted. PEG is actually an abbreviation of something which I managed to glance at the doc's note but could not really make out what it is. Anyway, the tube is fitted to the stomach and food can be pumped straight into the stomach. This way, I can get more nutrients without the hassle of cleaning my mouth and fighting with my thick saliva along the way everytime after a meal. Mind you, my mouth must be kept spic and span at all times because I don't have the necessary enzymes present in normal saliva to prevent tooth decay.

So, last Wednesday, I got myself admitted again and the PEG fitting procedure was scheduled for Thursday morning. A doctor came to brief me that night. She said that I would be sedated and would have to listen and follow their instructions closely. They would insert a camera attached at the end of a flexible thin rod down my throat and into the stomach. There is also some kind of knife attached next to the camera which is operable by a switch at the other end of the rod. On my part, I would have to swallow the camera and the knife according to their instruction. The doc would monitor everything through a computer. When the camera gets inside the stomach, he would press the button and the knife will jerk out and punch a hole from inside and through the abdomen. Then, the PEG would be fitted. Ya Allah! What have I got myself into. So, I spent half the night worrying about the procedure because all this while I have not been able to swallow even a tablet.! But then, I forced my mind to think of the benefits of having the PEG as described by many oral cancer survivors in the Oral Cancer Foundation and the Mouth Cancer Forum. I will do whatever necessary. When the morning came, I really calmed down and was ready to face another battle.

The battle started at 11 am. Again I was pushed to the all familiar operation theatre. A nurse came and injected something and right after that I was groggy and was unaware of whatever was going on. Suddenly, I realised that I could not breathe. And there was a commotion. Then, everything stopped and I was told that I actually stopped breathing and they could not continue with it. Then, they did a scope to make sure my air passage is ok and it was. I had to go for a chest x-ray and things look good. So, now the docs are quite puzzled what actually happened.

This morning the doc came and said that they can still do it under general anaesthesia. Ok, I might opt for that but it has to be after Chinese New year.

Wishing all my chinese readers a Happy Chinese New Year and the rest a happy holiday.

Bye, for now.

"Life is unpredictable, just make the best of what you have"

Follow-up

2009-01-16T09:11:00.004+08:00

Assalamualaikum,

Last week, I went for my routine check up after finishing radio and chemotherapy. The docs said that they were so happy to see me still in one piece. They said that I looked really well for somebody who had just undergone both treatments. I told them that I had cisplatin for chemo. They were even more surprised because cisplatin is the strongest chemo drug. It is platinum based and very toxic. I remember that the nurse who administered the drug made sure that she used rubber gloves. Well, its all god's will and our prayers were answered. Syukur, alhamdulillah!

I feel better and better everyday. I have been driving around picking up my children from school, shopping and running errands. The only thing that bugs me now is occassional spasms around my cheeks which cause the inside of both cheeks to slam against my molars. This causes ulcers and inflammation. When the doc noticed the ulcers they did a biopsy to rule out cancer..urgh!! I was not scared because I was quite sure it was caused by my molars. Sure enough, the result came out negative. Yae! However, the spasms are quite a mystery. Dr. Regu, the plastic surgeon suspects that the radiotherapy might cause some nerve damage and hopefully its only temporary.

I also asked the doc on the probability of recurrence. He said that if there is a recurrence, it would be within a year after the treatments. So, they will monitor very closely. Anyway, he advised me not to think about it too much into the future, just enjoy life day by day. Anything can happen to anyone, not only to people who have befriended cancer. People die every minute from a lot of things ( I am thinking of the Palestinians right now). So, honestly speaking having cancer is really not that bad! I mean you can still get on with your life unassisted. To me, that is already a blessing.

Now, let's all pray for our Gazan brothers and sisters extend our help in anyway we can. I am sure the amount of suffering there makes the agony of cancer sufferers trivial.

Bye, for now.

Sharifah

"Life is full of uncertainties"

Fight Like Hell

2008-12-30T20:31:00.003+08:00

Somebody said to me that those who survive from cancer are patients who either fight like hell or are in complete ignorant (they are not aware that they have cancer). Since there is no way for me to be in the second category, I have no choice but to fight like hell. And fight I will...

One thing for sure is that I am not alone in this battle. I have my family and friends who are also in this battle supplying ammunition whenever possible. My husband tirelessly goes all out to make sure that I don't give up. Why are people scared of cancer? Why is cancer considered a death sentence? For one thing, cancer is a horrible disease and the treatments are just as horrible. And mouth cancer is even worse because the surgery itself is debilitating. For people afflicted with mouth cancer, losing their tongue or part of the tongue is very common. The probability of recurrence is also quite high. So, to prevent recurrence, the mouth cancer patients are subjected to radiotherapy and chemotherapy. This will kill your appetite totally and then, you will have the painful ulcers to deal with.

In my opinion, surgery, radiotherapy and chemotherapy are only effective for short term. Therefore, completing all the treatments is not the end of the story yet. You will have to change your lifestyle and your mindset. Lifestyle includes the food that you are so used to and also exercise. Cancer is all about unhealthy lifestyle. Your favourite food (such as sugar, animal fat, meat) is also cancer's favourite. So, the more you eat those food, the more cancer cells fluorish. So, now I intend to change my diet altogether (easy, because I cant eat anyway). Today, my husband and I went shopping for the goodies mentioned in Dr Tom Wu's guide to prevent cancer. Dr Wu is a lung cancer stage IV survivor. We bought beetroot, carrot, lemon, parsley, red grapes, beansprout, tomatoes and a lot more which I cant remember). As soon as we got home, we straight away blended all the ingredients and I had to drink it. It was torturous! I thought I could never drink the concoction. After taking a deep breath and reminding myself that I am at war with cancer and I am not about to throw in a white towel, I finally managed to down the whole cup. Then, I realised that my shirt was all wet. I actually sweat profusely. I am supposed to drink the concoction 6 cups a day. Oh...please pray that I'll be able to do that.

All in all, I am doing well. I feel much better now. Yesterday, I drove for the first time after the operation in August and came back in one piece..

Thanks for all your prayers and kind thoughts.

Sharifah
"Life is too short but intend to grow old gracefully"

Amendment

2008-12-16T15:01:00.002+08:00

Hi,

So sorry because I gave a wrong number for my new line. Actually, my new number is
0135213020.

So long....

Sharifah

Recovering

2008-12-13T20:09:00.006+08:00

Salam and hello,

Many cancer survivors say that recovery period after radiotherapy and chemotherapy is the worst. This is because of the residual effects they have on the patients. I find that its really true. I feel a lot worse after both treatments than during the therapies. The burning sensation, the phlegm, fatigue, sleepless nights, no sense of taste and mouth sores can really drive you up the wall. These can really make you feel down because you just don't know whether it would go away and you start wondering whether the treatments are all worth it and if you die, would you die of cancer or the treatments?!

I am now about 3 weeks post treatments and I am glad to say that most of the problems mentioned above have gone. My voice is a lot clearer ( forgot to mention that I also lost my voice) now. Actually I was quite worried that I would not get my voice back because it happened to somebody I know who had radiotherapy around the neck area and the beam messed up his voicebox. I also sleep better now. The only thing that bugs me now is my appetite is zilch! I can't taste anything at all and I don't know whether I will be able to eat anymore. The only thing that gives me hope are the cancer survivors from the OCF (Oral Cancer Foundation) and the MCF (Mouth Cancer Foundation). Some of them who are also tongueless are able to eat and enjoy just about anything. I still can't imagine doing that just yet but sure hope that I'll qualify to join the club soon! (Insyaallah).

Last Thursday, an old friend, Zarina dropped by with another friend, Chee. We were college mates in Eastern Illinois University. The last time Zarina and I met was on her wedding day. It has been about 20 years and now her eldest son is already in college. When I saw her, I was so shocked because she has not changed one bit. She is just as cute and chirpy as I remember. We talked and reminisced about old time.

Yesterday evening, after being cooped up for days, I decided to follow my husband to the night market. There were a lot of food and the smell was wonderful. Oh...how I miss savouring laksa, fried kueh teow, pasembor, chicken rice and so on. How I wish I could just grab a chair and enjoy all those food...just like the old time. After buying a few things, we left. When we got home, I realised that my handphone was missing when I wanted to call my parents. I was so disappointed and felt so lost..huhu. But then, after a while, I thought to myself, oh heck...its just a handphone, not cancer..haha

So this morning I went to get me a new mobile and register for a new line. So, friends out there, please take note that my new number is 013-5313020 and do sms (text) me because I lost all your numbers. This line will only be operable on Monday evening.

Life is so unpredictable, isn't it?

Bye, for now.

"Life is too short, but intend to grow old gracefully"

Completed All Treatments

2008-11-29T19:28:00.002+08:00

Hi folks! Assalamualaikum,

First of all, I apologise for not updating this blog for quite sometime. Some friends have texting me wondering how I have been doing. Well, I am fine and thank you very much for being so concern.

I have just completed my chemo and radiotheraphy on the 21sts Nov. It has been about a week now post treatment. On that friday (my last treatment day), as usual I went to the Mt Miriam Hospital in the morning to be nuked. After the session ended, I was instructed to see the oncologist, Dr Rakesh Raman. Then it got me a little worried. What if he add more zaps? I really felt like I could not go on with the treatments anymore. Both of my cheeks and my neck area have turned dark. Its even darker than the normal sunburn. The mouth sores are getting worse and painful. And the phlegm...urgh!! I can hardly finish my milk without using tons of tissue because whenever I drink the phlegm will sort of interrupt a smooth flow of milk into my throat and this causes me to really cough and spill the milk all over myself.

Actually, on the day before (thursday) there was this lady who was happily telling everybody that it was going to be her last radiation. However, after being checked up by the oncologist, she was told to go for 5 more zaps of radiotheraphy. She was so disappointed. I was kind of worried that he might decide to give me more nukes. However, my worries had been unfounded. When he checked me, he said that I am doing just fine there would be no more zap. I have completed 30 sessions altogether. He checked my neck area and inside the mouth and he said I am ok now. I was so relieved.

Then, after coming back to the hospital, I continued with the last chemo. My husband came early on that day. After another 7 hours of chemo, everything was over. I straightaway asked to be discharged. I could not bear to stay there even for another minute. So, I came straight home right after that.

For a few days after the treatments, I felt quite weak and slept most of the time. However, I forced myself to take the morning brisk walk around the field in front of my house. I was told that the best time to exercise is between 6 to 7 am because that is the time where the oxygen content of the air is the most and pollution free. Its very important to supply as much oxygen as possible to the body especially cancer patients because cancer cells cannot survive in oxygenated environment. So, I managed to brisk walk 4 rounds every morning for in the past few days. Now, I feel a lot fresher and stronger. Thank god. Alhamdulillah.

Btw, my appetite is still lousy. I am still surviving on ensure milk, fruit juices and honey. I think I have forgotten how to eat. Got to relearn when the time comes for me to eat again...ha ha

Bye, for now. Life is great.

Sharifah

"Life is too short, but intend to grow old gracefully"

Counting my blessings

2008-11-10T17:37:00.003+08:00

Assalamualaikum everyone,

This morning, I went for my 21st radiation at mt miriam hospital. On the way, I could not help looking back what I had gone through since my first rad and chemo. I realised how fortunate I have been because I can still swallow my milk rather well even though I do suffer some mouth sores and the thick phlegm in the mouth which threatens to choke me once in a while. I have also completed 5 cycles of chemo and I have 2 more to go.

There are actually a lot of things that I should count my blessings for. When I looked around me in the Mt Miriam ambulance I feel like what I am facing now is just peanuts because there many other who suffer a lot more. Some can't even climb into the ambulance on their own. They have to be assisted all the time. Many have lost their appetite totally and are only getting by with water for weeks and they have become very weak. There is a 36 year old lady who has a stage IV cervical cancer which is inoperable and it has metastasised to her kidney. She is on palliative treatment which means it cannot be cured and the treatments are just to prolong her life.

Another thing that I am grateful for is that Allah has given me the strength to go through the treatments and I am almost at the end of the tunnel now. I have another 9 zaps to go. I think I can handle that. Alhamdulillah.

The most important of all is that Allah has chosen me to face this ordeal and not any of my children. I don't know if I will have the courage if one of my children is struck with cancer.

And because of cancer, I have made a lot caring friends which I would not have otherwise.

And for all those things, syukur alhamdulillah....

Sharifah

"Life is too short, but intend to grow old gracefully"

Penang General Hospital

2008-11-02T10:02:00.002+08:00

Assalamualaikum and hello everyone,

Got back home on Friday night after my forth chemo. Intended to post something but I felt too tired and went straight to bed. Yesterday, I felt very weak and slept all day. Alhamdulillah, today I feel a lot better and able do compose another post.

After my first operation in April, I stayed in Hospital Sultanah Bahiyah, Alor Star for 24 days. Then, for my second operation in August, I was warded for 34 days. My stay in the hospital was ok. I can't really find anything to fret about. So, when I was informed that I had to stay in the Penang GH through out my radiation and chemo therapies, I was sort of looking forward to it thinking the condition would be more or less the same.

On the first day, I was placed in the oncology ward, along with 20 other patients of both sexes and various conditions. Some were critical and dying. During the night, you could hear voices groaning and moaning in pain. It freaked me out. Most of the patients are undergoing chemo therapy. There was no air cond, just the fans and it got really warm during the day. There are three common shower rooms and three toilets to be shared among the male and female patients. To make it worse, patients with skin diseases are also placed in the same ward. Eventhough they have a shower room and a toilet separated from the rest, there was no way to be sure that they don't use the other shower rooms and toilets. Thats what bothered me the most. I mean when you are under radiation and chemo therapies, your immune system is at the weakest and you can get infected rather easily.

On the second day, I requested to be transferred to the first class ward but was turned down because they said that since I'll be doing chemo, I have to stay at the oncology ward for easy monitoring. I was really not happy about it because as I saw it, staying in the ward is not going to make anyone better. On the 4th day, I was informed that I could go to the first class ward with a condition that I have to come back to the oncology ward for the chemo. Of course I did not argue about the fact that my request to be transferred in the first place was flatly turned down. It was a pleasant surprise. I was so relieved and quickly packed my things and went to the first class ward.

I was placed in a 2 bedded room with an elderly lady who was looked after by her grand daughter. As soon as I settled in the ward, a nurse came and gave a briefing on the dos and the don'ts. One of the groundrules is that I could bring someone to accompany but it has to be a she because it is a female ward. Then, I started noticing that the girl who stayed with my roomate had her boyfriend there all the time. I could not help wondering why nothing was done about it. I brought that up to the nurses but was informed that they could not do anything about it. The boy just refused to budge and even slept there with the girl. If it was in Hospital Sultanah Bahiyah, that boy would have been chased out in no time. If the nurses can't implement the rules, what are the rules for and who are responsible to ensure that the rules are enforced??

Anyway, that lady completed her treatment and she left last friday, phew! Or else I would have to request for another room, wouldn't I?

Oh..by the way, I am already halfway through my treatment and my hair is still intact and my mouth is not as sore as before. However, I am still fighting with the phlegm in my mouth. Many people say that from now on, the level of suffering from the side effects will either stay the same or go downhill. In other words, I should feel better after this. Now, that is something to look forward to...

Will write again, soon...

Bye, for now.

Sharifah

"Life is too short, but intend to grow old gracefully"

My Third Chemo, 11 th Nuke

2008-10-25T09:33:00.002+08:00

Salam and hello friends,

I wish I could say that everything is smoothsailing. I wish I could say that going through the treatments in battling cancer is just like going for a picnic. I wish I could say that having chemo is also like having ice-cream cone. I wish...

Yesterday, I completed my 11th radiation and 3rd chemo. I am now experiencing a bit of a stiff neck and dry and heaty mouth. I have been forewarned by people who had gone through the journey about dry mouth but just could not imagine how its like. Well, actually it is horrible. My lips started cracking, and my saliva thickened becoming phlegm-like. Everytime I have my milk (still can't eat, ok?), I have to clean my mouth thoroughly and it is a chore because some of the milk would get entangled with the web of stringy, phlegm-like saliva. Usually, by rinsing with water and mouthwash alone will not get the phlegm plus milk out. I have to use a piece of gauze to reach into my mouth up to the throat and gently pull it out. Then, my lips would start bleeding because of the rubbing of the gauze against it and also having to stretch lips wide enough.

After finishing my chemo last night which took about 7 hours, hubby came to take me home. I was so tired because I could not sleep at all during the chemo. After getting home, I got ready for bed but could not have a good sleep because my thick saliva started filling my mouth and occasionally got lodge at the throat. This made it hard to breath and I had to get up often to get the gooey stuff out of the way. That was not fun!

Swallowing has also become painful because my throat has become sore to the point even swallowing water is difficult. But, I have to force myself to consume lots of water to ease the heatiness and dry mouth. It does help. I am now only drinking oxygenated water and so I feel a lot better. I am also taking a lot of coconut water..yummy!

As I am writing this, I am also noticing that my hair is falling off. Not so much yet. Well, that is to be expected but still, its a bit scary. Good thing I had a good sense of cutting my hair real short. Well, my family thinks that I look cuter in short hair. Who knows I might look even cuter without hair...ha ha

Another thing, compared to Penang GH, I prefer Hospital Sultanah Bahiyah anytime! Will tell you more about Penang GH in my next posting...hmm a lot of stories...

Until then...

Bye, for now.

Sharifah
"Life is too short, but intend to grow old gracefully"

The Oncology Ward-Penang GH II

2008-10-18T15:10:00.002+08:00

Salam to all,

Yesterday, marked my 6th nuke. 19 more to go. I have started noticing the tanning of my skin around the neck area. My face is still as cute as before. After coming back from Mt Miriam I started my chemo rightaway.

Since I had that roller coaster ride experience in my first chemo, this time I was not taking any chances. I had a bottle of coconut water with me and a few bottles of oxygenated water. Well, actually I had been drinking those for the whole week. When the cisplatin started going in, I waited in suspense for the wave of nausea to strike. It didn't. I didn't feel uncomfortable at all throughout the whole process which lasted for 7 hours. Syukur alhamdulillah. It was truly a holiday cruise after all. God answered our prayers. I am feeling just fine. My hair is still intact. I am anxiously waiting for the day when it starts falling. Then, I'll become a skin head.

Talked to a lady last night who has breast cancer. She has lost her hair completely. She said that she did not lose her hair until after two weeks. Her just seemed to drop off her head like a wig. After two weeks, her head felt warm and a bit painful. So, she went to the shower and tried to wash her hair. Suddenly, the whole chunk of hair just dropped on the floor. It gave her quite a rude shock. Sadly though, she can't have it operated because there is no lump, just that her breast got swollen by the cancer cells. So, her only option is chemo.

Being in this ward, you have the chance to get to know other cancer patients and survivors. One chinese man I met relayed to me his predicament. He had colon cancer last year. Had it removed. After five months he had a recurrence. This time it attacked his liver. Luckily, it was operable. Now, he is going for chemo. He said that his doctor gave him 6 months to live. He said, well let's see whether the doctor is right. My goodness. Amazingly, he did not look sad at all. He was chatty and laughing all the way. Then, there is another man who is having lung cancer. He is now on palliative care which means that he won't be cured but he is only on chemo to sort of prolong his life. He has a really positive attitude as well. When the doctor asked why he waited so long before getting treatment, he replied in jest that "belum sampai seru" or in other words he had not got his calling yet.

I also notice that about 80 percent of the cancer patients are chinese and most of them have colon cancer. Next in line are malays and most have breast cancer. Indians are the minority here. I can't help wondering why.

Until my next chemo,

Bye.
Sharifah

"Life is too short, but intend to grow old gracefully"

The Oncology Ward-Penang GH

2008-10-17T09:35:00.004+08:00

Salam and hello everyone,

I am now warded in the oncology ward of Penang General Hospital. Here, there are all sorts of cancer patients, majority suffer from colon cancer and quite a number are recurrence cases. I got here on Oct 7 and started my radiotherapy on Oct 10. I am going to get 25 zaps of the nuclear thing. I also have to go through 5-6 cycles of chemotherapy which is administered once a week. This also started on Oct 10.

Last friday, Oct 10 I went for my first radiation. When I laid down on the table, the technician secured my head to the table with a mask. That mask was fitted on my face when I had a ct scan. The ct scan shows the exact position of the cancer tumour/cells which is targeted by the radiation. Thats why its very important to keep my head at the exact position during the treatment as when I had the ct scan. The whole process took around 10 minutes but it felt like forever because I was fighting with the saliva which threatened to choke me...

Right after coming back from Mount Miriam, the nurses straighaway started my chemo. It started around 7 pm. I was put on IV line. There were four bottles of water with sodium chloride and one bottle of chemo drug (cisplatin). The chemo cycle started with two bottles of water. It was alright. I started wondering what the fuss is all about. Then, came the cisplatin which took about two hours. I was still having fun. After, that back to the water. Then, my head started spinning. I began to see a lot of stars. I felt like I was on a roller coaster. It went on for two hours.

There was a lady who had nasal cancer. She started groaning and moaning in pain right after I started the chemo. She also seemed to be gasping for air. Then, she stopped for a while. She was groaning again when I was on my roller coaster ride. After the water finished, amazingly the ride stopped. I was so tired that I drifted off to sleep amidst the groaning and moaning. I think it was around 3 am. I woke up at 6.30 am and was told that the lady passed away at 4.00 am.

Last Monday, another patient succumbed to lung cancer which had metastasized to the brain. She was only 24. She was about to start her career as a pharmacist when she realised that she had lung cancer. It has been depressing but then, you can see how fragile life is. A lot of time, things just do not go as we'd like to.

Today, I am going to have my second cycle of chemo. The nurses are preparing the stuff for me. Let's hope that its going to be a holiday cruise this time....

Will keep you updated whenever I can.

Bye, for now.

Sharifah
"Life is too short, but intend to grow old gracefully"

Getting ready for the radiotherapy

2008-10-05T19:58:00.003+08:00

Salam,

Raya days are almost over, well, sort of. Schools reopened today. My husband drove my children to school and me to the hospital after that. I went to the dentist for the final check up before the radiotherapy. Then, she gave me the dental clearance and I am all ready to be "nuked"...just learned the word from the oral cancer community at the oral cancer foundation.

Actually, there are a lot of information that I gather from the oral cancer forums. Since I'll go for the radiation, I have posted several questions on it in the forum. I've been informed that the IMRT (Intensity Modulated Radiation Therapy) is a type of radiation which only bombards the cancer tumours, unlike the conventional radiotherapy where the radiation would bombard the normal cells as well. I am not sure whether the Mt Miriam where I'll get the radiation is equipped with it or not. I tried to ask some people, docs included, but they don't seem to know what I'm talking about. Oh, well....

I was told by my docs that that I'll have to make sure that my mouth is clean all the time or I'll develop fungus and mouth ulcers. On top of that, my mouth will also be very dry because my salivary gland will collapse. I will also lose the sense of taste..Well, haven't I already? However, they can't tell me what I can use to alleviate the problem. Its like you will face the problem and there is nothing you can do about it.

I got to know from some friends I made in the mouth cancer forums that there are some products available in the US and UK to deal with the problems. I'm hoping that Mt Miriam has access to it. I am kind of nervous to go through the treatment but can't wait to get it over with.

I still don't know how many zaps I'll be getting. I'll find that out on Oct 7 when I see the radiation oncologist. They'll mark the target area on my face and get a mask fitted. The mask, I was told is to hold my head still during the treatment.

So, we'll see what happens next.

Bye, for now.

Sharifah
"Life is too short, but intend to grow old gracefully...."

Selamat Hari Raya Aidhil-Fitri

2008-09-28T13:31:00.002+08:00

Assalamualaikum and hi,

Hari raya is just around the corner. I was saying to my husband just the other day that most of the hari raya songs are very sad. I can only think of three songs which promotes joy and happiness in hari raya. First is the one sung by Allahyarhamah Saloma, the second one is sung by Allahyarham Sudirman (Balik kampung) and the third by Siti Nurhaliza (Nazam lebaran). It seems to me that you are supposed to feel sad on hari raya. So, that means, people who are in the same boat as me should feel double sad on this joyous occasion..eh?

In most literature I've read about battling cancer is that you have to be mentally strong. You have to show cancer who is the BOSS. You have to fight, sacrifice and at the same time have a lot of faith in the almighty. You also have to do a lot of soul searching to motivate yourself and at the same time find somewhere in your heart to accept what has been planned for you. You can't get anywhere near that by feeling sad all the time, brooding with self-pity and always asking "why me?".

This Aidhil-Fitri is going to be tough for me. I can't savour the various mouth watering ketupat and rendang, cakes and biscuits, lemang and other hari raya goodies. Socialising is not going to be easy either because I keep on drooling whenever I am upright. To stop the drooling, I have to sit back in a reclining position. Or else I have to always cover my mouth with tissue or small towel.

Anyway, I am going to have a happy hari raya, whatever it takes. Not being able to enjoy food does not mean that I can't be happy. There are so many things in life other than food that can cheer you up. All you have to do is to open your eyes to new horizons. Travelling, for instance...hmm how does that sound? Meeting old friends??

So, I am taking this opportunity to wish all my muslim brothers and sisters Selamat Hari Raya and Maaf Zahir dan Batin. May your hari raya be the happiest day.

May Allah bless us all.

Bye, for now.

Sharifah
"Life is too short, but intend to grow old gracefully..."

The Oncology Department, Penang General Hospital

2008-09-22T20:33:00.000+08:00

Yesterday, I went back to the hospital to see my doctors. First, Dr Regu who is the plastic surgeon. Then, Dr Zul who is the ENT specialist. Dr Regu said that there are very few cases of oral cancer which strike people like me who are considered young (he he), non-smoker, non-drinker, and non-betel leave eater. The startling fact that he told my husband and I is that when oral cancer strikes people of my category, it is really aggresive meaning much more aggresive than people who have the risk factor. Thats why they have to monitor my progress very closely. In reflecting what he said, I thought to myself. hei, smoking and drinking are not bad after all....

Then, we went to see Dr. Zul and he said that he is quite confident that there will be no more recurrence after the radiotherapy. I asked him the side effects to be expected. He said that it depends on individual patient. However, the most common ones are dryness in the mouth because the radiation would attack the salivary glands. The radiation is aimed at the cancer cells which are fast growing. It so happen that the cells in the salivary glands are also fast growing, thus, they would fall prey to the radiation beam as well. That means, I will have to force myself to take a lot of water to compensate for the dryness and also to overcome the heat from the radiation. Well, I suppose losing the salivary glands is a small price to pay compared losing everything to cancer...

So, I was warded again yesterday after seeing the doctor because this morning I had to be driven to the Penang GH in an ambulance to see a doctor at the oncology department. A nurse woke me up at about 6.00 am telling me that the ambulance would be leaving at 7.00 to Penang. So, I quickly got to the shower and prayed. Then, had my milk (can't fast) and quickly went straight to the nurses station. They said that the appointment was set at 8.00am. I was saying to the nurse who accompanied me that we would not make it on time because of the distance (Alor Star to Penang is about 160 km) and the heavy traffic on the Penang bridge. Was I in for surprise!!

As soon as we hit the highway, we were already flying. We reached Sungai Petani at 7.20 am (55km). When we reached the Penang bridge, there was a massive traffic jam. Then, the driver put on the siren and we just criss-crossed the vehicles and made it before 8.00am. Phew!!

Went in to see the doctor. Was informed that I will have to go to Mount Miriam on Oct 7 for the oncologist there to plan my radiation treatment. As soon as the treatment starts I will lodge at the Balik Pulau hospital not the Kepala Batas hospital. Doesn't really matter to me because whichever hospital I'll be staying in, transportation will be provided to go to Mount Miriam. So, the treatment will start after Hari Raya. I don't know whether I should be happy or not because I feel that it would not make too much difference before or after raya. But then, a close friend commented that well, at least I would not be on the hospital bed in the morning of Hari Raya. I guess she had the point.

Bye, for now.

Sharifah
"Life is too short, but intend to grow old gracefully...."

Friends from SMK Air Merah

2008-09-19T12:02:00.000+08:00

Salam and hello:

Naturally, I am a very carefree and cheerful person who love my job as a teacher very much. In my 16 year teaching career, I had been on my toes doing a lot of things at school level, district, state as well as national levels and enjoyed every minute of it making a lot of friends along the way. I became busier than before when I transferred to my present school, SMK Air Merah because I was one of the pioneer teachers and we sort of helped in the setting up of the school. I used to get quite depressed when holidays approached because I was afraid of being bored of idling. I could never understand many people who often say that they can't wait to retire because I just could not stand the thought of not doing anything for years waiting for my time to go.

But now.....I have not been working since March this year. It has already been six months. Amazingly, I feel fine. I get to do a lot of things that I could not find the time to. I don't miss my busy teaching life at all ( writing record book, taking attendance, marking exercise books and exam papers etc, etc) but I miss teaching my students very much and most of all, my colleagues who are quite close to me. I miss the jovial environment in the staff room every morning when we greet each other and joke around. Sharing jokes/stories/problems during break times at the school canteen is already a norm.

Then, last Sunday they came to my house for a visit..yae! Azvida, Azlina, Linda, Shimah, and Jah with her daughter. It was really fun talking about school.
They filled me up about the latest gossips and the goings on. They wished me well on my radiation treatment. Too bad its ramadhan, so nothing to eat or drink. On the following Tuesday, Kak Saerah, Rohaizah and Fairuz came. All of them talked about how hectic things are getting at school now. The form five students are having their trial examination now and after this its going to be the final exam and so on...Oh.. I don't envy them at all.

Hei you guys, I miss you very much...

Sharifah
"Life is too short"

Home Sweet Home

2008-09-12T09:07:00.000+08:00

Assalamualaikum,
Hello to all,

Got home last night. I was told by my doctors that there was no point for them to restraint me in the hospital anymore. I was fine. I was not sick at all. I was walking around everywhere, visiting other patients. I was always having either a book in my hand or a laptop surfing the internet and practically all the things healthy people do everyday except eating. I still can't take solid food yet, only liquids. And drooling. I am still drooling but not as much as before. So, when the doctor said that I could go home, I was really excited. I was at the hospital for 34 days!

Talking about drooling, my lower right lip does not feel anything. It feels as if you are about to have your tooth extracted where you don't feel a thing. Numb. That is why a lot of time, I don't realise that my saliva drips out of my lips. So, I have to have a box of tissue by my side at all times.

Many people say that I look a lot better now than I did after my first operation. My neck is not as swollen and I don't look pale at all. The only thing is that I have lost a lot of weight. I guess so because I can't take as much food. Just liquids.

On the 22nd, I will be seing the oncologist to discuss the radiation treatment. I heard that its pretty rough. I hope I will be able to go through it just like hundreds and thousands of others who have been through it and survived! I'll be admitted again on the 21st, and the hospital staff will take me to the Penang GH to see the oncologist. After that, I'll be transferred to another hospital in Kepala Batas where I'll be driven to either Pantai Mutiara hospital or Mount Miriam in Penang Island for the treatment daily. So, that will be another long hospital stay. Well, after being in the hospital for 34 days, I have kind of got used to it and to be pampered again by the nurses.

Thanks everyone for your kind thoughts and prayers.

Ok friends. Got to stop now.

Bye.

Sharifah

"Life is too short"

Still in the Hospital

2008-09-07T10:51:00.000+08:00

Salam and hello:

Today is the 25th day I am in the hospital. I am actually doing fine. I am not under any medication any more and I can walk around everywhere. The only problem is the dead cells on my tongue which is collecting milk residue. So, I have to wait until the dead cells and the milk residue comes off. Then only I can take other types of liquid food and be allowed to go home. As for now, I have to get by with milk. And because of that, fasting is out because I need to take the milk every three hours. On top of that, I also need to maintain a high level of oral hygiene. We are talking about rinsing my mouth with mouthwash 5 to 6 times daily.

Two days ago, one of my uncles was admitted at this hospital because of a heart problem. He has been going in and out the hospital for the last 4 years. He is suffering from high blood pressure, diabetes and heart disease. He is now wheelchair bound. When my husband came yesterday, we went to visit him. He was quite chatty regardless. I hope he will get well soon.

On the 22nd, I will be seing an oncologist to discuss my radiation treatment. My doctor hopes to proceed with it as soon as possible. The treatment will take about 6 weeks. Well, looks like Hari Raya is also out for me. Thats ok because as things are now, not being able to celebrate Hari Raya is just a small matter. What matters most are getting better, family and friends! When people who matter to me are up and about, I am thankful.

So, folks. Thats all for now.

Bye and wassalam.

Sharifah

"Life is too short"

Passing Time in the Hospital

2008-09-01T09:54:00.000+08:00

Salam to all:

When I had the first operation, I was not given any sedative before going to the operation theatre. So, I was conscious when I entered the OT. Upon realising what they were going to do to me, I started saying the shahadah. However, this time, its different. I was asked to take a pill which was supposed to calm me down. I was not told about how powerful the pill was. All I remember was that I was wheeled to the OT and I was waving my good byes to my family. When the door closed, I saw my mother in tears and then, I was out. Darkness. The next thing I remember was the ICU and the voices of my husband, my parents, my aunts and uncles, my brother, Rofli and wife, Zah and the whirring of all sorts of machines. Then, I counted my blessing for coming out of the OT alive. I did not get to say the shahadah before I blacked out!

It has been slightly over 2 weeks after the operation and I am still in the hospital. The doctor is still waiting for the lab report on the tissue that they removed. The lab report is needed before discussing my follow up treatment plan with the oncologist. I don't really mind being in the hospital because I have my blog and some books sent by Hizzad to keep me occupied. I got the books last friday, I have finished reading two: The Kite Runner by Khaled Houseini and Nadia's Song by Soheir Khasoggi.

The Kite Runner is an interesting story, about culture and life in Kabul, the hardship of majority of the people and the prosperity of the minority. It also centers around the dilemma and the guilt consuming the main characters (father and son).

Nadia's song is about the tragic life of a singer, Karima Ahmad, who was well-known throughout the Arab world specifically Egypt. Her life was intertwined with forbidden love, hardship, triump and tribulations. She lost her two year old daughter in a Hotel fire during her concert. Little did she know that her daughter was actually found by a childless couple who fell instantly in love with the lovely child and adopted her. Mother and daughter found each other eventually and realised how much they cared and loved each other. The story took a turn when Karima died in a hotel room and it was said that she died for taking sleeping pills and alcohol. This, her daughter would not accept and at the risk of her life, she strived to find out the real reason behind her mother's death and her findings startled her...

Now, I am on to the next novel, The Shadow of the Wind by Carlos Ruiz Zafon. Whether the book is interesting or otherwise remains to be seen. I should be able to update you before I leave the hospital.

Who said hospital stay is horrible, huh?? Thank you so much, Hizzad.

By the way, I have perfected my swallowing technique. Now, I can finish 2 glasses of milk twice as fast as before. Just put the glass on your lips, tilt your head a bit, let the liquid flow into your mouth and use your breathing and your throat muscle to control the flow into your throat. Voila, you've got it made!

To my muslim brothers and sisters: Selamat Menyambut Ramadhan and Selamat Berpuasa.

May Allah bless us all.

Bye, for now.

Sharifah

"Life is too short"

Can't Wait

2008-08-28T12:57:00.000+08:00

Assalamualaikum and Hello to all:

There are actually two teams of doctors who are taking care of me. The first, is the ENT group and the other is the plastic surgeons. According to the ENT doctors, I should be allowed to go home already if I prefer because my recovery has progressed so well. The coughing has stopped and there is no more problem with phlegm. The physiotherapist has been coming everyday.

Today, she came and saw me drinking milk from a cup. She said, "I don't know what else to tell you. Apparently she thought of teaching me swallowing technique! And I have been getting up at 6.00 am every morning and do all kinds of exercises that she had shown. Then, she smiled and left.

Then, came the ENT doctors, including Dr. Zul when I was having a mug of milk in my hand. He asked whether I've been using the feeding tube or not. I said, I've been told by the plastic surgeons to use the tube for feeding stuff other than milk and water. So, he said that I could try to take blended porridge orally. It has to be blended because I am not allowed to chew yet because they are afraid that I might break whatever is left of the jaw bone. My jawbone is still not strong enough. He said that this will have to go on for another two or three months. Boy, oh boy! If I can manage to take the liquified porridge, they can take out the feeding tube. Fortunately, came lunch time, I managed to down a bowl of blended porridge. So, looks like the feeding tube can go this afternoon.

Yesterday, a long lost cousin came visiting. She has been married to her brother in law for ten years; that is after the passing of her sister after suffering from cancer of the jaw. Her sister had 6 children. So, she is now taking care of the six children and her own child. Her late sister had a swelling under her right ear. At first, they thought it was just something to do with her thyroid. So, they just applied some ointment and seeked treatments from various clinics. When the bump did not go away after a few months, they decided to take her to the hospital. She stayed in the hospital for 8 days and nothing was given except some panadols. Finally, on the 8th day, they decided to do a biopsy and a ct scan, and the result came back positive. Then, the doctors planned for a surgery on the next day. However, on the next day, she passed away. That is how horrible this disease is.

So, you see. You really have to be on the look out for anything funny about your body.

Oh..oh. The nurse is here. Got to go.

Bye, for now.

Sharifah

"Life is too short"

Recuperating

2008-08-23T10:16:00.000+08:00

Hello everyone:

Here I am again at ward 7a, bed 17. Feeling really great. The doctor just came by and said that everything is going well. I have started sipping water. Today, I am going to start drinking milk. Hopefully, I will be able to take food orally in 2 or 3 days. He also talked about the radiotheraphy treatment which he wants me to start as soon as possible. He is not taking any chances this time. After this, looks like I will be transferred to Hospital Kepala Batas for the radiation treatment. Well, whatever it takes, I'll go for it.

After the operation on Aug 13, I was pushed straight to the ICU. I came around on the next morning, I think it was around 10.30am. I heard my husband's voice reciting the Surah Yasin. Then, I knew I was going to be alright. A nurse came and talked to me. She said that she knew me when I had my first operation. She said that I will survive again because I am really a strong person.

That afternoon itself, the nurse came back saying that they would transfer me to Level 6 for observation. They prepared for me the self-administered morphine whereby I need to press a button whenever I feel any pain. When that button is pressed, the morphine would be transfused into my system. I only got to press the button 3 times. After that, it seemed that the machine malfunctioned. Fortunately, I did not feel any pain after that.

After 6 days, I requested to be transferred to the first class ward. The doctors readily agreed. I moved right away to level 7 and was put in a room along with 2 other elderly patients. One is a chinese lady suffering from a terminal liver cancer and the other is an Indian lady who had her knee cap replaced. The Chinese lady could barely move and she was groaning in pain most of the time. Her loving husband and relatives were by her side all the time. My heartfelt sympathy went out for her. On the next day, I was asked to move to a 2-bedded room which is more comfortable. This morning, I heard a commotion. Then, I found out that the Chinese lady had passed away in her sleep. My condolence to her family. Life is indeed too short.

I am now bored stiff staying in the hospital. I sure am glad that I have my laptop and some books with me. Friends and relatives who have been visiting almost every other day also help me go through my stay here. Yesterday, I had a visit from a cousin whom I had not met for years. Upon hearing about my condition, she quickly came to the hospital and filled me in about her siblings whom I used to know very well. That was really nice of her.

Ok folks. Will keep you updated, later.
Bye, for now.

Sharifah
"Life is too short"

Second Operation-August 13th

2008-08-18T11:54:00.000+08:00

Dearest sisters and brothers:

I haven’t updated this blog because of two reasons: firstly, problems with my internet connection and secondly, my second operation which I had on August 13th. It was a 9 hour operation.

In the first operation, I had a total glossectomy ( removal of the whole tongue) which affecting my speaking and eating ability. This time, it’s a partial mandibulectomy (removal of part of the lower jaw) which doesn’t deteriorate my speaking and eating ability further. Thank god.

I was admitted on Sunday Aug 10th. When I first walked into the ward, the nurses were like, "hey, you are back". And I said, "ya, I missed you all so much". They laughed at my remark. So, on that day, they did an ecg and blood test. On the next day, my consultant came to inform that everything looks ok and they would proceed with the operation on the 13th.

Friends and families started visiting when they heard the news. Smses came in non-stop until the big day. They really cheered me up and kept on reminding me to focus my mind on being cancer free and a survivor. I was a bit disappointed though for not being able to get on line to send news to friends from other parts of the globe (those people from the mouth cancer foundation) who have been very supportive in this battle) and update this blog.

I was pushed into the operation theatre at about 11.30 am. My family members were all here. Then, a nurse came to give me a pill. She said that this is to calm me down. My brother Rofli, asked the nurse for the pill too. Everyone laughed. True enough the pill really worked. As soon as I got into the ot, I was knocked out, already in the dreamland.

My husband said that I came out of the ot at about 9.00 pm and the doctor informed him that everything went well. On the next day, I was transferred to level 6 for close observation, just as I expected. I still felt ok. Came the third day, I started feeling horrible because of the phlegm, coughing and continuous drooling. They have to constantly suck the phlegm out. Its feels terrible. They have taken out some of the tubes. I feel much better now, eventhough I'm still coughing and drooling because now I have my laptop with me and can get on-line.

The doctors just came and said that I am doing well and should recover soon. Well, let's see what they have to say tomorrow.

Until then, bye!

Sharifah
"Life is too short"

Friendship Never Dies

2008-08-02T22:52:00.000+08:00

Hello everyone,

In January 1980 I, with a big group of Malaysian students flew to the US to pursue our tertiary education. We were stationed in Southern Illinois University, Carbondale, Illinois for one semester where we had to undergo an intensive English course. This is to enable us to follow lectures in english and to assimilate and adapt to the lifestyle in the US. After finishing the English course, we were sent to various universities depending on the disciplines that we undertook. I was sent to Eastern Illinois University along with nine others. They were Chee, Chenah, Jamaliah, Tip, Hizzad, Mongkok, Jakju, Harun and Dawam. After two semesters came another batch of Malaysian students; Kitty, Ram, Zarina, Kak Ti, Tamam, Kassim, Hatta and Wak Im. Oh, we had a lot of fun and a fair share of problems as well. Since there were so few of us, we were like a close knit family.

Today, Chee, Hizzad and Harun came to visit me. I was caught by surprise. I was really touched. Had never occurred to me that they would take the trouble to fly all the way from KL and back just to visit me. They took me out for lunch and we talked about a lot of things, our family, career, our student days and so on. But nobody touched about me having cancer. We just had fun. I am glad that I managed to make them understand me eventhough I know that I must have sounded weird. I appreciate their visit very much.

Hizzad, I have started reading the book. It is very inspiring. It helps me look at things from a different angle and perspective.

Thank you very much, friends.

Sharifah

"Life is too short"

Cancer Strikes Back!

2008-07-29T10:11:00.000+08:00

Assalamualaikum and hello all,

A few weeks ago, I mentioned about the swelling on my gum and my doctor decided to do a biopsy and a ct scan. I also mentioned that when your forehead has been printed with the letter "C" you are in a constant fear that cancer will come and make fun of you again. Well, that fear has become a reality.

Yesterday, I went for my follow up half hoping that the results would be negative (Something inside me is saying that it is back). So, when my name was called, I anxiously walked into the doc's office and silently praying that everything would be fine. However, we can only pray but god almighty has his own plan for us. I was informed that the results came out positive. I was not really shocked because this kind of thing is to be expected but disappointed. Because it came back so fast. I mean it has only been 3 months. Surely this friend called "C" just can't wait to play another game with me.

This time, it attacked the gum and the right mandible (lower jaw). The doctor set Aug 13 for my operation. Its going to take about 6 to 7 hours. So, I will be in the dreamland again. They will remove the lower right jaw and reconstruct it with a piece of bone taken from another part of my body. The doc said that I am still lucky because they can still operate on me. There are a lot of recurrence cases where they can't do anything any more. So, for that I count my blessings. But then, this time around I am not as terrified as before because I know what to expect. Its going to be the swollen neck, tracheostomy, feeding tube, IV tubes etc and all the wonderful doctors and nurses all over again.

I just hope that I have the strength, faith and endurance to fight this battle. Well, I survived before. Why wouldn't I this time, right? The hardest part of facing all this is to break the news to the loved ones knowing that they care too much about me. To see the agony on their faces again, all that worry. the tears and so on. I know that my suffering would strain them emotionally. Thats why I intend to be strong and by god I will be strong for their sake. I am going to beat this. This is just like crossing a bridge and I will be at the other side of the bridge. (Said by a newfound friend who is also in the same journey as I am)

So, friends, thats the latest development about me. I will keep you updated.

Bye, for now.

Wassalam.

Sharifah

"Life is too short"

Good Bye, My Friend!

2008-07-27T12:04:00.000+08:00

First posted, July 20th 2008

Assalamualaikum,

In September 2004, my husband and I started going to the lounge in the Park Avenue Hotel in Sungai Petani to listen to the live bands playing oldies (songs by the beatles, Bee Gees, Broery, Lobo etc) while sipping coffee or tea. We used to go there almost every weekend. Sometimes, the owner of the hotel, the late Tan Sri Eric Chia would also be there. After sometime, one evening his aide came to us and said that the Tan Sri would like to get to know us. Then, we moved to his table and he ordered the bartender to bring us more drinks. On top of that, he ordered the chef to prepare food for us. We had a long talk. On that night we had a chance of getting to know this successful but humble man. He related to us his childhood, his struggle, his pains and achievements which include the Perwaja Steel. He also told us about how Tun Mahathir entrusted him with the task to turn around Perwaja Steel. We also talked about his court case. Since that evening, we were welcomed to the lounge, drink whatever we want and eat anything free of charge until now! Sometimes, when we went there, he would insist that we sat at his table. He would ask how we are doing and also our children. Not only that, every ramadhan he would insist that we bring our family to the hotel to breakfast and flatly refused to accept any payment.

Then, starting from March this year, we stopped going to the lounge because I started becoming unwell and finally had my operation to remove the cancer tumour on my tongue. We learned from his aide that he had been wondering why we had not come to the lounge for a long time. After a few weeks after my discharge from the hospital, we went to the lounge again twice but he was not there. Then, suddenly, on the 24th June, last tuesday at about 5.00 pm, we received a call informing us about his passing. I was devastated for not being able to meet him after I recovered.

I still remember an occasion, when my husband and I went to thank him for his sincere generosity (we are nobody), and he said, "friends don't say thank you. Friends say 'hi'". No matter what people say about him, to me he is one person who would not hesitate to contribute to anyone without hoping for anything or favour in return.

Today is his funeral. Rest in peace, Tan Sri. Good bye, my friend!

Sharifah

"Life is too short"

To be or not to be, that's the question!

2008-07-26T12:52:00.000+08:00

Many people say that when you get cancer, its not the end of the world. Many people survive. However, many don't. I find that this issue is really confusing. We still don't know for sure why some people get cancer even though they practice healthy living, while there are some who smoke away cigarettes and enjoy a long life, disease free. It is also still mind-boggling that some cancer sufferers survive and some don't. Take breast cancer, for instance, I know of a friend who had stage 3 breast cancer and she had a mastectomy. She is now a 3 year survivor. Another lady I know, had stage 2 breast cancer and a mastectomy as well. She passed away a year after diagnosis.

There have been 5 people in my residential area diagnosed with cancer including me. Out of the five, I'm the only one with oral cancer. In a way, having oral cancer is quite glamorous because many people are not aware that such cancer exist and they are very curious about it. They cant imagine how I eat without the tongue. The rest have breast cancer. One lady with breast cancer passed away last week. The other two passed away last year. So now, there are two of us left. This lady who is still around decided not to undergo conventional treatments. She opted for alternative healing (traditional). This is the dilemma that we are always in. Conventional treatment or alternative?

As for me, I go for both. I believe that both have the plus and minus points. Even if you decide to go for the alternative treatment you also have to fall back to the conventional opinions and suggestions because tonnes of scientific researches have been conducted and most of the treatments are based on these scientific findings.

Its true that the conventional treatments such as the operation, radio and chemo theraphies have debilitating effects on the patients but being stuck with cancer, you dont have much choice.

Waiting in suspense for my biopsy and ct scan results. Please pray that I will be strong enough to accept or face any possibility.

Bye.

Sharifah

"Life is too short"

Living with cancer

2008-07-20T20:01:00.000+08:00

Assalamualaikum:

Once you are diagnosed with cancer, you often have moodswings. This is due to the uncertainties in life. There are certain days when you feel cheerful thinking that you have managed to beat cancer, and there are others when you are really down feeling that you are fighting a losing battle. Today is one of those DOWN days!

You see, in my last follow up with my consultant, he got worried about the swelling on my gum. So, he insisted on doing a biopsy, followed by a ct scan. The results are due next week. Can you imagine how worried I am, not to mention my family about a possibility of a recurrence? There are now a lot of "what ifs" about my situation. I hope I will be strong enough to face any possibility.

Another reason for me to feel down today is the passing of a lady who had fought a battle against breast cancer in our residential area. She had gone through everything in her fight like mastectomy and chemo theraphy. After sometime, she was faced with a bone problem where her bone became brittle and she suffered from broken bones twice. She had become bedridden for quite a while. Finally, she succumbed to the disease this morning at 3.00 am with her loved ones around.

So, that is why I feel very sad and down today. Will I be able to fight this horrible disease?
But then, come to think of it, there is nothing for certain in life, right?

Bye for now. Wassalam.

Sharifah

"Life is too short"

When Cancer Strikes!

2008-07-15T12:45:00.000+08:00

Assalamualaikum;
Hi to all:

When you are diagnosed with cancer, your whole life and your attitude towards life change. You start to look at things from different perspective. For example, before cancer came into my life, I used to be so scared to even mention the word, much less to even think that I might be getting it. Most of the time I would prefer to say "that disease" instead of saying "cancer". Now, I am the one facing "that disease" myself. And now, I feel quite comfortable to tell everyone that I have cancer.

In my previous posting, I mentioned that I had a lot of visitors when I was warded. Words got back to me that almost everybody who came said that they admire my courage. They keep on saying that I am highly spirited and that is one of the reasons for my fast recovery. Of course I am proud of myself when I heard that. Its just that I don't quite understand why people keep on telling me that because I am scared as hell. The future is so unsure. The thing is when you are diagnosed with cancer, there is no such thing as going back to your normal life. Life can never be the same again. You have to make a lot of adjustments in your daily life. You are also in a constant fear that cancer might visit you again.

In my case, the adjustments that I have to make is eating and of course speaking. Eating wise, I have to chew longer than others. This makes eating a bit taxing. So, I have to make do with soft food. Burgers and pizzas are out. When I eat out with my husband, he has to be very patient waiting for me to finish my food. I am a bit hesitant to eat out with friends because I don't want them to have to wait for me. Speaking wise, families and friends have to get used to my weird pronunciation. My husband said that he can understand 80% of what I say. It is sad because normally I am a chatty person with a good sense of humour (thats what I've been told). Well, I suppose 80% is not bad. All is not lost. Now, I tend to avoid getting into a conversation with strangers because I know that I sound funny and they would not understand what I've gone through.

But then, with time, you will get used to all the changes and adjustments that you have to make. I would say that I have already got used to some of them. I have my families and friends to thank for. I don't know what Allah has in store for me but I pray that it is going to be something better than what he has taken.

Wassalam.

Sharifah

"Life is too short'

Private or Government Hospital?

2008-07-11T14:17:00.000+08:00

Assalamualaikum;

Hello everyone:
I have been having problem with my internet connection. That should somehow explain why I haven't updated my blog for sometime.

Whenever you are asked for an opinion as to which hospital to go to when you have to go for treatment, most people including me, would quickly say that you should go to a private hospital if you can afford or if you have an insurance coverage. We have such a negative impression towards government hospitals for some reason. When I had my three children, I made sure that I got to go to a private clinic knowing fully well that it would cost me thousands of ringgit!

So, when I found out that I had to undergo a major operation, my husband and I quickly consulted some friends (two of them are doctors at a private hospital) as to which private hospital I should go to. To our surprise, none of the hospitals have the expertise to perform such operation because of the high cost involved and they do not have enough specialist doctors to do it. Even the two private hospital doctors could not give accurate information on which hospital is able to do it. Feeling disappointed and worried, I had no choice but to go to a government hospital. I was then referred to the Hospital Sultanah Bahiyah in Alor Star. I later found out that this hospital has the best facilities and expertise in Malaysia in diseases involving Ear, Nose and Throat (ENT).

After having my operation and getting treatment there, I have to change my opinion on government doctors because they are indeed very good. Dr Zulkifli Yusof, an ENT specialist who performed the operation on me has handled about a hundred oral cancer operations in the hospital since 2002. I breezed through my recovery period without any problem. I was taken care of by several other ENT doctors such as Dr. Yusfarina, Dr Ida Sadja'ah, Dr Yusri, Dr Azlina, Dr Syifa, Dr Ngoo and not to mention the wonderful nurses when I was warded. A million thanks to all of them and congratulations for doing such a splendid job. Now, I am able to eat and speak (eventhough with some difficulty with certain words). The only thing that is bothering me is the possibility of a recurrence. Dr Zul has been reminding me to watch out for the symptoms of a recurrence which could be some bleeding or white patches at the end of the artificial tongue and to adhere closely to the follow up appointments. So, from now on, if anyone were to ask me I would not hesitate to suggest going to the government hospital. They are the best and the best part is you don't have to pay through your nose!

This past week, I have noticed a swelling on my gum. When I went for my follow up last Monday, I pointed that out to Dr Zul. He suggested a biopsy. So, I agreed to do it. The results of the biopsy are not out yet. He, nevertheless scheduled a ct scan this Sunday. Well, one can never be too careful where cancer is concerned. Hopefully, it is just due to an infection or the scar of the operation. Anyway, we will find out next week. In the meantime, lets keep our fingers crossed and hope for the best. I will keep you updated. Whatever happens, it happens for the best!

Wassalam. Bye!

Sharifah

"Life is too short"

Level 6

2008-06-20T09:25:00.000+08:00

Assalamualaikum everyone.

I stayed in the ICU for one and a half days. During my stay there, I was aware of my family and relatives who came to visit. I was also aware that many of them were in tears and shocked the minute they saw me. However, I was too weak to respond. I was like drifting in and out of the dreamland. Then, the doctor came and informed me that I was doing alright and I would be pushed to the ward on level 6 right in front of the nurses' station so that they could monitor my progress. Ok, here we go!

As soon as I reached ward 6A, I saw so many familiar faces besides my family. Then, I realised that they were actually my colleagues and they were all in tears. I was wondering why. I tried to smile at them to express my gratitude for their visit. Much later, I found out that I really looked horrible because my face and neck were so swollen and I had various tubes on me! People who saw me at that time thought that I was really in pain. Here, I would like to tell everybody that I have never been in pain at all after the big operation.

I was fed with "ensure milk" through the NG (nasogastro.... not sure of the spelling) tube which was inserted through the nose every three hours. I also had an IV (intraveneous) line fixed through which blood, saline solution and various medication were transfused into the bloodstream. Thanks for modern medication because I did not experience any pain. Can you imagine being injected everytime they needed to get anything inside your body? I had that for about 2 weeks. Day after day, these tubes were taken out one by one. This enabled me to move around with ease.

During my stay in ward 6A, I enjoyed having visitors everyday. Unfortunately, I could not speak at all. I had to talk through my laptop, typing away questions and answers. Good thing that I am a fast typist. On May 1st, which was a labor day, I had the most number of visitors. One of the visitors was my Pengetua. I was really touched by her visit. The rest were my colleagues, my fellow Etems JUs, my Perdagangan team, my relatives and friends. Thanks everyone for taking your time to visit me. That really kept me going.

Cikgu Fauzi, my good friend, came near and started typing something on his handphone. He was trying to wish me luck. Then, I had to point out to him that I was not deaf. I just could not speak! He laughed about it.

Sharifah

"Life is too short"

Quality of Life

2008-06-17T21:31:00.000+08:00

Assalamualaikum wrbt:

Hello,
Before my operation, my doctor said that at least 3/4 of my tongue will have to be removed or possibly the whole tongue. The prospect of being left without a tongue really sounded scary. A lot of things came into my mind. First, my career in the teaching line, all that hard work and sacrifice would be down the drain because most probably I would not be able to speak. Next, my family. Would they be able to understand me? Lastly, food. Would I be able to eat at all? What is going to happen to me? Well, lets not think of the worst. For all you know, I might still be able to retain 1/4 of the tongue. That is better than nothing, right?

Then, came the big day, April 16. I was told that my lower jaw would be cut through the middle and an incision would be made on the neck area from ear to ear. This is to enable the doctors to have access to the tongue and the floor of the mouth and the lymph nodes around the neck. They had to take out the lymph nodes because normally, in oral cancer cases, the cancer cells would surely get to the lymph nodes sooner or later. Ok, this is it. I was pushed into the operation theatre at 11.25 am. I was then introduced to the surgeons ( there were 5 or 6 of them) which consisted of the ENT specialists, plastic surgeons, anasthetic team and the nurses. Well, I couldn't care less. I was in my own world. Then, one of them placed the oxygen mask on my nose and I started saying the shahadah. After the fifth shahadah, I was in a dreamland.

When I came around, I was already in the ICU, all wired up. The first voice I heard was that of my husband. He said,"Don't think of anything. The doctors have done their best. Just rest. Don't worry about anything." At that moment, I knew that I had lost my tongue. I just nodded.

2008-06-14T19:15:00.000+08:00

Assalamulaikum

Hello to all:

According to my doctor, Kedah has the highest number of oral cancer cases in Malaysia which is quite puzzling. Hospital Sultanah Bahiyah in Alor Setar has performed about a hundred major oral cancer operations within 8 years. During my stay in the hospital for about 3 weeks, I witnessed 5 patients who had the operation. I was the only one who was able to take in food orally.

Being quite a young patient for oral cancer, I was able to communicate rather effectively with the doctors and nurses by using my laptop and handphone. However, many other patients had a hard time to tell what they needed or the problems they had. There was one elderly patient who was probably about 70 yrs old and had partial glossectomy, meaning part of the tongue removed. He tried so hard to speak but no body understood. He could not write either. He was taken care by his daughter. Because of the difficulties in communication, both father and daughter were constantly at loggerheads. The daughter's inability to understand her father irritated him so much.

10 days after my operation, an appointment with an oncologist was set because the lab report was ready. I was informed by the oncologist that the operation was successful and the tumour taken out had a clear margin and the cancer was only at stage 2. Therefore, following treatments are not necessary, meaning that I am spared from radio therapy and chemotherapy. I was so relieved because the side effects from both treatments can be horrendous. Thank god.

"Syukur Alhamdulillah"
"Life is too short"

Prroses Sebelum Pembedahan

2008-06-12T12:21:00.000+08:00

Selepas mendapat keputusan biopsi yang mengesahkan saya mengidap kanser lidah, saya terpaksa membuat ct scan untuk mengenalpasti saiz ketumbuhan. Ct scan itu dibuat pada 27 Mar di hospital Sultan Abdul Halim, Sungai Petani. Untuk pengetahuan semua, proses ct scan ini dimulakan dengan satu suntikan cecair berwarna ke dalam urat di lengan supaya imej ketumbuhan cancer boleh dipaparkan dengan jelas. Kemudian, saya dibaringkan atas satu katil yang akan bergerak ke dalam satu gelung yang akan memancarkan gelombang ke bahagian mulut dan tekak. Hmm..ok juga. Tidak menakutkan seperti yang diberitahu oleh beberapa orang yang pernah melaluinya. Selepas itu, doktor membuat temujanji untuk berjumpa dengan pakar Ear, Nose and Throat (ENT) atau Pakar otorinolaringology. Itu baru saya tahu bahawa otorinolaringology itu adalah sama dengan ENT. Pada 1 hb April, saya bersama suami pergi berjumpa dengan pakar ENT tersebut iaitu Dr Hisham. Setelah merujuk kepada imej ct scan, Dr Hisham kata cancer saya ini adalah tahap 2-3 dan rawatan yang terbaik ialah pembedahan di mana 2/3 atau semua lidah terpaksa dipotong. Katanya saya tidak akan dapat bercakap dan akan menghadapi masalah untuk makan. Pembedahan itu pula akan disusuli dengan rawatan radio therapy. Perasaan saya waktu itu hanya tuhan yang tahu, tapi, saya fikir saya terpaksa menghadapi segalanya dengan tabah dan sabar. Ini baru saya faham makna sabar dalam erti kata sebenar. Bukan senang nak bersabar menghadapi ujian Allah. Pembedahan itu pula adaah pembedahan besar (major operation) dan hanya hospitl Sultanah Bahiyah, Alor Star sahaja yang ada kepakaran dan kelengkapan untuk melakukannya. Pada 7hb. April saya pergi jumpa pakar ENT Dr. Zulkifli di hospital AS. He is a very good and experience doctor. Selepas memeriksa lidah saya, beliau terus kata cancer saya adalah tahap 4 dan perlu dibedah dengan segera. Nasib baik tak ada tahap 5. Kalau tidak mungkin dia kata tahap 5, saya fikir dalam hati. Beliau memberi tarikh 16 April untuk pembedahan tersebut. Dia tanya adakah saya bersetuju. Nak kata apa. I had no choice. Nak lidah ka? Nak nyawa ka?

What causes oral cancer?

2008-06-10T22:05:00.000+08:00

When I was first diagnosed for having oral cancer, the first question asked by the doctor was "Do you take betel leave(sireh)?". The next question was "Do you smoke?". And the third was "Do you drink (liquor)?". Well, of course the answer to the three questions is none of the above. Age wise, I am considered too young to have oral cancer, because most of the time, oral cancer strikes people at the age of 55 and above. So, I am proud to say that I was the youngest patient with oral cancer in the ward. When people ask me, why I got the cancer, the only answer I could think of is "kena loteri", or "I hit the jackpot". It can happen to anybody. However, according to the doctor, if your answer is "yes" to any of the three questions above, you are in the high risk group of getting it. Believe me, once you get it there is no way you can get back the quality of life you enjoyed before. As for me, being able to eat and be understood is already a blessing for I know that there are many oral cancer patients who have to have their stomachs inserted with feeding pegs (a peg is kind of tube) to enable them to stay nourished because they can't take food orally and speak at all.

"Syukur Alhamdulillah'
"Life is too short"

Masalah Bercakap

2008-06-09T11:50:00.000+08:00

Salam to all!
Beberapa hari yang lalu, beberapa pelajar saya datang melawat saya di rumah. Mereka adalah terdiri dari pelajar yang saya seringkali tegur dan telinga mereka saya tarik kerana pelbagai sebab. Kedatangan mereka betul2 menceriakan saya. Mereka bertanyakan bermacam2 soalan. Antaranya ialah:
-bagaimana cikgu makan?
-cikgu rasa sakit tak?
-cikgu akan mengajar lagi tak?
Sebenarnya, soalan-soalan ini seringkali ditanya oleh sesiapa saja yang datng melawat saya. Apabila saya menjawab secara lisan, komen yang pertama ialah, "eh! boleh cakaplah". Rupa2, kebanyakan orang yang mendengar tentang penyakit saya sangkakan saya telah menjadi bisu. Saya boleh bercakap tetapi tidak sejelas mereka yang mempunyai lidah tetapi masih boleh difahami. Tentang sama ada saya akan kembali mengajar, mungkin tidak sebab saya bercadang untuk melibatkan diri dalam bidang penyelidikan. Niat saya itu sudah pun ada sebelum saya mendapat penyakit ini. Dari segi makan pula, saya terpaksa menggunakan otot-otot mulut yang lain untuk menolak makanan ke kerongkong. Agak susah, tapi saya rasa semakin mudah apabila dilakukan berulang kali. Deria rasa memang kurang. Tapi masih boleh rasa sedikit. Oleh itu, saya bersyukur sebab Allah tidak tarik kesemua nikmatnya yang kebanyakan kita take for granted.
Wassalam.

"Life is Too Short"

2008-06-07T16:20:00.000+08:00

Hello, all!
In my excitement to start my blog I completely forgot to introduce myself. My name is Sharifah Rashidah. 46 years young. Married with 3 school going children, all boys. Working as a teacher, that is before cancer knocked on my door. Now, it depends on how much I can speak. I am teaching in a secondary school, SMK Air Merah in Kedah. Been teaching there since 2003. I love travelling, reading, and listening to oldies. Good thing that eating is not my favourite pastime! Lost so much weight in the past few months. So, I need to try my best to gain some.

Cancer Fighting food

2008-06-06T14:16:00.000+08:00

Hi, everyone!

For those with cancer, a restricted diet is recommended - very restricted for four months, then if the patient is doing well, it is liberalised to a certain extent. The restricted diet is:

Vegetarian (it takes large quantities of pancreatic (digestive) enzymes to digest meat - these are the enzymes that dissolve the protein lining of the cancer cells which can then be killed by white blood cells) i.e. no meat (including chicken), fish, and no dairy produce. Milk contains growth factors and hormones known to promote breast and prostate and other types of cancer - Professor Jane Plant CBE The Plant Programme (Virgin, London 2001) p9.

Fresh vegetables and fruit - should be eaten raw if possible because cooking destroys enzymes. (Juicing is a delicious way of ingesting raw fruit and vegetables ) Cook vegetables lightly if necessary. Eat a wide variety, and eat the seed of the fruit e.g. apple pips, grape seeds, peach kernels.

After Operation

2008-06-05T10:33:00.000+08:00

Assalamualaikum:
I had my operation on april 16 2008. It was a total glossectomy whereby the whole tongue is removed and the doctor made a flap which consists of some tissue taken from my chest. The artificial tongue is non-functional. This simply means that speaking and eating are greatly affected. After the 9 hour operation, I was pushed to the ICU where I stayed for a day and a half. There all kinds of tubes inserted into my body. My chin and cheeks were swollen. After the ICU, I was transferred into the ward where the nurses monitored my progress. I was fed through the tube for i could not take anything orally. That happened for 2 weeks. I could not talk at all. Had to communicate via the handphone and laptop.

2008-06-01T20:53:00.000+08:00

It started as a normal ulcer under my tongue in October last year (2007). there was a molar which did not sit on the lower jaw properly. That molar kept on rubbing against the wound. So, I applied some ointment on the wound. It didn't go away after a few days, so, more ointment. I finally noticed that the wound got bigger and bigger. Finally, a lump started to take shape on the tongue. That was when I lost my ability to speak accurately. On top of that I could not eat solid food. I had to settle on soft food only. In Feb 2008, I decided to have that tooth extracted. Still, the ulcer just refused to budge. Then, my husband started noticing that something is seriously wrong with me. We decided that I should go to an oral surgeon, and i did. I went to an oral surgeon in the Sungai Petani Hospital. Dr. Sumairi, the doctor who attended to me decided to do a biopsy. That was on mar 12. On mar 19, we went back to the doctor to discuss the result of the biopsy. It was positive, malignant cancer!! I was too numbed to feel anything at all. Dr. Sumairi arranged for a ct scan to be done to see how far the cancer cells had spread. Then, an appointment with an ent specialist was set. On Mar 26, we went to see Dr. Hisham the ent specialist. After examining me, he said that possibly the whole tongue will have to be removed and the whole procedure would involve a team of plastic surgeons as well. In between appointments I had also been to some people who are practising alternative medicines which have proven quite useless because in the end on April 16 I lost all my speaking ability, which has been my bread and butter working as a teacher.