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"