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”