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
Tuesday, March 31, 2009
Saturday, March 14, 2009
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.....
Sunday, March 01, 2009
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"
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"
Wednesday, February 18, 2009
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"
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"
Wednesday, February 04, 2009
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”
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”
Friday, January 23, 2009
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"
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"
Friday, January 16, 2009
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"
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"
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