What's Next?

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

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

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?

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?

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

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?

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

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

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

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

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

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

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

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

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?

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

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

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

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!

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

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

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

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)

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

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

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

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"