Taking stock of the situation

                 Last night as I lay in bed reflecting on my progress, I figured that I needed to stop for a second and take stock of my situation. What is it that I am doing well and where do I need more attention. What is helping me through and what is dragging me down. I needed to answer this question " What is the problem now!" If I could define the problem accurately than half my solution is answered.
                The problem is appetite and eating. The problem is sore throat and difficult in swallowing. The problem is loosing weight excessively, if the fat is being reduced I don't mind but my muscle is getting eaten up, and that is not a good sign.( Muscle atrophy). The problem is dry mouth and poor saliva lubrication. The problem is tiredness and lack of energy.
                So having clarified the problem I started to look for ideas and possible solutions. It soon became apparent that this was basically a 2 fold problem. It is a physical and mental issue.The physical issue is directly related to me being under nourished and therefore the outcome is tiredness and lack of energy. The dry mouth and sore throat is manageable. Its the mental issue of eating and appetite.I needed a paradigm shift. I no longer can build an appetite using the old way of looking at food and relying on taste.I figured out that eating from now on will be solely for sustenance and prevent further deterioration of body mass. Eating was the secret to getting me through the next phase of treatment. I needed to come out of this in a better physical condition than I started.No point curing the cancer and inheriting a poor muscular skeleton frame. Eating had to take a significant and important role. So I decide that from now on eating is going to be my priority..           

Half way there and then all hell breaks loose

          I am writing this from the DSH undergoing my 4th chemo and soon my 14th radiation. I came in early to the hospital at 9.00am but there were many patients waiting to be admitted. So the admission process was slow and I nearly fell asleep waiting for my turn.By the time I went into the clinic it was 10.00am. Today the oncology clinic is full. Yes literally full. Many new faces and a couple of familiar face. Dr Lum dropped by to see me and reassured that the treatment was going according to plan. The blood result was back and my full blood count was normal and so was the renal profile test. Which means that I am coping with the chemo pretty well. He looked down my throat and commented that it was red due to radiation and that from now my throat will progressively get redder and more painful as the radiation burns the tissue in the throat area.. The real test is about to begin.

Time out for a pic

            Around 11:30am my wife and daughter,Eli, dropped by to bring some cheer. It was almost lunch time and so they took my orders of mash potatoes and clod slaw. (KFC). They soon disappeared to buy my lunch while I carried on with the monotony of chemo drip. Ugh!.  By the time they returned, something had gone wrong with the drip. The cannula had become adrift and the drip was no longer going into my veins but discharging into the muscles and underneath the skin. This caused a huge swelling in my right wrist. Lucky the nurse on duty noticed it and stopped the drip. I was left with a stark choice of now having my left wrist pierced  to continue the drip process or somehow convince the medical people that the last 2 bottles were only saline water and that I could drink that water as a replacement. After giving assurance that I will consume 2 cans of 100 plus and eat bananas as a replacement for the remaining drip, I was given the green light to do the radiation and go home. It was a long day. Got home at 1530hrs.
                   Towards the evening my regular golf buddies from KGNS dropped by to see how I was faring. By the time they left it was 1930 and I was kind of not feeling well. Tiredness had set in. I told Chris I wanted to eat dinner earlier and then go to sleep and rest. A cold chill started to creep into my body. I switched all fan and aircon but the feeling kept on creeping in. I crawled into bed at eight and put on a heavy blanket to try and keep warm. The chill and cold descended into my body and there was nothing I could do but try to weather the storm out. I dozed off but suddenly alarm bells started ringing in my head. My head was dizzy and hot and all hell was breaking loose. I thought I did not have enough 100 plus and I was dehydrated. So I SMS my wife downstairs to urgently buy warm 100 plus immediately. Everyone rushed upstairs and to see me. A thermometer strip put on my forehead read 40C...wow.. that's very high. I told Eli to bring be some Panadol and I downed 2 in row. I got the blood pressure machine to see my pressure and it registered 77/118. Not bad. That night was a real torture. There were so many negative thought spinning around with negative outcomes. Creating any thing positive thoughts was impossible. I was loosing  the mental battle. I left it at that. I began to think of a contingency plan just in case the fever or any thing else put my life at a further risk. I just disappeared into my contingency plan and fell asleep.

The hill climb begins

              Today is the 16th FEB and I am 1/3 way into my tonsil cancer treatment. Just like the Tour De France, that race is won in the Pyrenees, and for me, this is my Pyrenees, the hill climb begins now. The battle to win or loose begins now. If I ever had to be strongest mentally, physically, spiritually or emotionally then this is the time to show it and endure the obstacles of this part the journey. The only difference between the TOUR and me, is my journey is alone with many by standers cheering me on.

I don't have a Peloton to give me inspiration and energy but I will never wish that for any one to accompany me on this journey. Cancer is a dreaded disease.
            As I had been told earlier by my oncologist, 3rd week onward is crucial to my well being. And today I am beginning to feel the strain of repeated radiation and 3 rounds of Chemo. So what actually is happening to me ? Well two folds. First its physical. My throat is sore and swelled from radiation and swallowing is difficult.Saliva is thick and irritating. Taste is gone ! I am entirely on a broth semi liquid diet.  Somehow shredded salad with cucumber and carrots go down very well. I guess the water in the salad makes my mouth lubricated and therefore chewing and swallowing manageable. Appetite is non existence.I have to eat to live! Secondly, its the tiredness that sets in 2 day after the chemo. The head is suffering from a hangover and there is nothing I can do about it. I do not take any supplements as I am afraid it will interfere with the chemo. I just have to let time pass by. Time heals every thing.

Sliced Salad

My Broth..... just a bowl

8th Radiation and 2 chemo latter

          Just got back from my 8th radiation this morning and I am beginning to feel the irritation in my throat. It feels like the onset of a sore throat, Eating, drinking and swallowing is not a problem yet but I can anticipate it to  change slowly. I do eat well but the diet has dramatically changed from spicy curries to soup and steam veges and fish. This transition was expected. But I kinda miss the vindaloo chicken from the SS3 corner shop.

       Yesterday was a great day as I managed to conduct a CRM class just after my radiation in the morning. My voice was still in tact and the enthusiasm still  evident. A real good sign that I am well in control of my ailment. The saliva does get thick whilst talking, so sipping water throughout the day was necessary. To manage my dry mouth and thickening saliva the doctor had given me some samples to try out. The result of dry mouth is the infestation of mouth sores and fungus and loss of teeth. So mouth hygiene is of utmost importance now. I will have to brush my teeth with a very soft bristle brush and special toothpaste very often. A mouth gargle is also required to moisturise the mouth lining regularly. During the night I apply a gel to the tongue and the upper lining of the mouth to keep it moist, otherwise my sleep get interpreted by me wanting to drink water to ease the dryness of the mouth. I only hope that this is a temporary condition whilst I am under radiation, but my doctor friend tells me that one of my saliva gland will be permanently damaged  and the other remaining saliva glands can and will make up for the shortfall.
This is one of the side effects of radiation. I will also loose a patch of hair on the back of my head / neck area but so far I don't see any signs of that ...yet!! Food doesn't taste as good as before and my appetite is slowly decreasing. I just weighed my self and I am 88kg. Before I started all this I was 91kg. So I have lost 3 kgs in 11 days. Is that good  or bad? I don't know? I looked into the mirror and can see the redness around my neck area. Soon I will not be able to shave with a razor in that area as the skin will be very tender. The radiologist told me to use an electric shaver.
        So far I am feeling OK and in great spirits. Support from family and friends is crucial so keep the calls and comments coming. I am being over pampered by Chris with food and special ice cream and what not.
Will update in a few days again. Thanks for reading folks. Got any questions or comments please feel free to write.

The going gets tough...the 2nd chemo

        Today is my 2nd Chemo followed by radiation. It starts off by the nurse putting the branula in place followed by a constant drip of 500ml NaCl  0.9 % Sodium Chloride Intravenous Infusion for almost 1 hour plus. I can see 3 bottles of this stuff on my table. So work it out ...how long it will take ? When the first bottle on NaCl is finished the main chemo called Cisplatin is then dripped. This is where the discomfort starts. The chemo today is a bit more tiring than my last. The process is taking slower to complete than the previous session.There seems to be discomfort in my left wrist and my left hand is pretty cold and numb.My left pinky finger is also painful, do not from what?... Massaging the hand and fingers helped a bit but the best thing to do was to take out my laptop and start writing this  blog.

Left Hand Inop

My Left hand

Most of the pain originates from boredom as there is nothing to do while chemo takes place!! I cant use my left hand so this is written with one finger right handed.

       Dr Lum was here a short while ago we had a lively conversation about my therapy and the progress I was making. I was told in no uncertain terms that the journey is going to get tough and that I need to be mentally and physically ready for it.Well I am ready for it but how well I cope remains to be seen. 3rd week onward is critical. I am in my 2nd week !! Saw the guy next to me in his 3rd week and he looked wretched.Wow! What about me in 3 weeks ?? Will keep all of you updated.
       I am due for 6 chemo and 35 radiation over 7 weeks. I have so far done 2 chemo and 4 radiation session. The chemo is slotted for every Monday and the radiation every day Mon-Fri for 7 weeks. Any session missed during the weekday is replaced on the same Sat, like what is going to happen this week due yesterday,Mon, being a public holiday. Its almost 13:00 and I am almost done with the chemo session. There is still 1 more bottle of the saline solution to go. Something strange also happening. I am going to the washroom to ease my self more than usual.This is because of the chemo and the saline solution that has been dripped for the last 4 hours needs to be expel from the body. Boy oh boy!! The kidney need to work over time !!

Strong Anti Vomit Pills

      Yeah I forgot to mention. Just before you start the chemo, they will give you Emend tablets to take. This manages one of the side effects of the chemo which is nausea. I heard its a costly pills.....Well nothing is cheap for good medication.
I got into a discussion with Dr Lum whether a heart by pass procedure is cheaper or cancer treatment. Well we never reached a consensus in the end. I think some doctors out there can shed some light on this topic.

      Today was a long long day. By the time I finished and looked at the time is was well past 1530hrs. Chris was waiting for me at the car park. She had gone shopping for plants at Sungai Buloh. We wanted to plant a willow tree out side the house, We had bought the pots last month and now it needed a plant.
      So how did I feel at the end of it all ?? Pretty Good. Not much side effects of the chemo today and I am still full of energy.

Friends make the difference

    Chinese New Year just passed by without me noticing it in the usual way. I was preoccupied with finishing my working roster. A dear friend of mine, Tiong, called me up and reminded me " Better enjoy your food while you can" and I couldn't agree with him more. The usual CNY dinner with our our school friends was on the agenda and this time it was more than a dinner. It was a show of support, a real concern for my ailment and of course to keep the spirits up. It was Sat 4th Feb and we met up at the Greenlicious Organic Restaurant in Damansara.

     2 days prior to this my body started to feel the effects of radiation. Firstly I felt a little bit "heavy" in the head and really lacking in energy. Sleep would be the easiest thing to do. I could watch the Astro and in between the commercial fall asleep for 4-7 minutes and wake up again. The saliva started to get saturated and thick. Drinking water was the best thing to do. Nibbling on Mandarin orange and grapes helped a lot. Slowly the taste buds started acting strangely. Yep! the effects of radiation was slowly but surely creeping in. Check out the Effects of Radiation here. Well I did expect this and now I am living thro it.! Just got to manage it. Period.!

The soup was great

       The dinner went well. The biggest joke was my bitter taste to everything. The chicken rice tasted bitter. The mushroom satay tasted bitter. Even the tiramisu had a bitter after taste.The only thing I enjoyed was the mushroom soup. That was great !

        So someone suggested to Chris, why not cook me bitterr gourde from now on and I would not know the difference.

Mushroom Satay

The night went well past the normal working hours for the waiters and the owner. I guess giving Ang Pow to the workers did the trick and we stayed on till 11:00pm.

The night ended well with great encouraging parting words and levels of support.
So thank you guyz once again for making the  CYN dinner a great evening.

The euphoria died down on the way home with our 2 daughters in the back seat of the car, talking about Marisha's flight back to London the nest day. It had been a whirlwind visit by Marisha to see me, attend her friends wedding, re-apply her IC which she lost, her driving licence and banking stuff. Wow what a night! It was past midnight when I fell asleep dreaming............!!

40 years of friendship...The Old Frees Chai, Lawrence,Me, Huat, Tiong, Patrick, Beng, Sunny

The Gang : Photo taken by Marisha

D-Day - The Battle Begins

Branula in my wrist

      1st Feb was the appointed day........9:00am sharp at the DSH. It kind of reminded me of my first day at school or college. Accompanied by my daughter, who had just returned from London for a short visit, I reported at the Oncology Suite. I was introduced to the staff there who asked me to make my self comfortable either on the sofa chair or the bed if I preferred......Being a macho man, I would rather take the chemo sitting rather than lying. Well I did not know.the difference anyway.

So the process started, the nurse spraying some very cold stuff on my wrist to numb the area and then placing the branula in place.Was it painful..mmmm...not really. This will be a process which I will have to go thro each chemo session, and that is 7 sessions planed over 7 weeks. Its a slow process and killing time is the key to managing this process. I must have read the Start newspaper from front to back and front several times. Wi-fi is freely available so I logged on to the internet and checked my e-mail, company mail and Google news, Malaysiakini and where ever my interest took me to. The main medication administered was Cisplatin, and this is pretty much the Industry Standard (I had checked this out on the Internet the week before.) .

Main Ingredient for the Chemo

The whole process took almost 4 hours.I was feeling pretty good with no visible side effects of the chemo. Maybe a small swelling at the wrist, but nothing serious. Phew! The first part was over and I made it. During the Chemo, I got introduced to a gentleman named Ewe Jin who sat by me for a while and related his experience with nasal cancer and his experience going thro it. Oh what a story ! Read it here Face to face with cancer. I downloaded the book and read it in sitting.







I was sent downstairs to the Radiation Room for my first dose of radiation. This was interesting as I had to wear a mask that was fitted over my face. I looked more like Spider man. The process involved is to position my head in a fixed location and then let the computer guided machine shoot its rays at its pre determined spot. Actually I did not feel a thing. I could hear the machine making some kind of noise and I could see the variable  aperture of the machine at work. This machine is called IMRT and check it out here.

With  the face mask attached

     By 2:30 pm it was all over and I felt fine, in great spirits and happy that I had started the treatment and I managed it very well,......well beyond my expectations.

Using laser to align

The process begins

Making up my mind was easy

          The appointment to see the Oncologist Dr Lum was on the 20th Jan at 10:45am. My wife and I walked into his suite (yes the place is called Oncology Suite) that morning and he was waiting for us. My brother, Dr Azeem, had called him earlier and told him the extent of my tonsil cancer. Listening to him gave me a sense of confidence that every thing will be alright.To find out the extent of the cancer I asked a CT scan to be done immediately. I needed to know the extent of the spread. Was it localised as the pathologist had suggested in his report or was it otherwise.So without hesitation, I went and did the scan. The results would be out the next day.

           The next day I called and I received the best news so far. There were no sign of spread. Phew ! What a relief. At least I was in for a stage 2 cancer of the tonsil and the track back to good health looked easier now.

          Dr Lum outlined a treatment plan that matched what I had researched on the internet the night before. Chemo and radiation for 7 weeks. I agreed immediately on the plan and choose the 27th to do the masking fitting and 1st Feb for the start of the long journey. Meanwhile I went back to flying and finished of my Jan roster. A flight to Hong Kong, Macau, Penang, Langkawi, Johor Bharu and Phuket, a CRM class and a simulator LOFT session. I really enjoyed the last week of flying knowing that as soon as I start the chemo, I would be medically grounded.

19th Jan 2012, When the wind direction changed

         4 days since my tonsil operation passed by without me thinking of the results of the biopsy. My appointment was 9:45am and I waited for the Dr to come. I whiled away reading the newspaper. Not long after I noticed him walking along the corridor and walking towards me and he whispered into my ear. I just looked at him and said "OK". What was OK? The results was OK? Or the news was OK?. My immediate response was an SMS to my wife and a forwarded same message to my personal doctor Dr Kat
                                                         "It's Cancer ayaaaaaaaaaaaa"
I sat back very calmly and gave it another thought. The tell tale signs were there. I had earlier researched this topic on the Internet and all pointers were pointing in that direction. I knew what I was in for. A long and winding road. A journey that many before me have undertake and successfully achieved the desired objective.
         The pathology report was out and I had "Moderately differentiated squamous cells carcinoma"
What made the report good to my ears was " The deep surgical margins appear free of tumour involvement"
What I understood was the rotten part of the mango had been gouged out and the remaining flesh of the mango is good to eat. I am disease free. What is next ?

       I immediately called my younger brother Dr Azeem for recommendations and directions for an Oncologist. He highly recommended the guy at Damansara Specialist Hospital and he even made the appointment for me to see him the next day. Now its time to tell my children the news, my brother and sisters, friends and colleagues.
I felt that telling everyone would make me at ease from the denial stage. The first to come to see me at home and support me at the crucial stage were my old school friends from Free School. That was comforting and reassuring that all will be OK. I just had to tell a story and someone needed to just listen. That's all that was required. I learnt this from the CISM class that I conduct at work for pilots and cabin crew.

How the journey started

       1st Feb is a Federal Territory holiday, but for me, it was an early morning journey to DSH for my first treatment for Tonsil Cancer which will take me on a journey of 7 weeks.The seeds of this journey was set a few weeks earlier. Let me tell you the story...........

       Whilst clearing the throat during the morning wash, fresh blood stained the bathroom sink. Inquisitively, I kinda looked into the deep end of my throat to see the reason why. The left tonsils seemed enlarged compared to the right. So later that morning I went over to our family doctor, Dr Kat, and consulted him. Within minutes he wrote out a referral letter to Assunta Hospital to consult an ENT specialist. He even phoned and made the appointment the same day at 1400hrs. I think he knew more.

       I got to see the ENT fella around 1530hrs that same day, Dr Lim Wye Keat. I told him my problem and one look at the tonsil I could see the alarm on his face (I do read body language pretty well as I teach this subject during my CRM classes for the pilots). Deep down I knew it was something unusual. "Did I have any pain", he asked several time, and I answered,"No I don't". He ran his fingers around my neck to feel for enlarged nodes but could not locate any. He swings my chair around to face a monitor and there he prepares a scope to push down my nostrils and into the back of my throat to examine and as well as show me the enlarged tonsil. I was thrilled to bits. It was really cool to see such high tech equipment being used. It gave me a sense of confidence that the right person was dealing with the problem.

       Immediately after the examination, he states his intention,,,,,TAKE THE TONSILS OUT, the left one.
Normally both are taken out simultaneous if tonsils are the problem but in this case OUT with the LEFT. He got on the phone and booked the OT for weekend for the operation. Wow...man this guy moves fast !!! As usual he asked me not to worry as all will be OK. I concurred with his decision and as well as with the speed and urgency of the situation.
     

You can see the left tonsil sticking out

        I got home around 1645hrs and the events of the day made me think....yeah... I should tell all my friends and relatives about it. So with the the help of my daughter, Eli, I took the digital camera and a torch light,I got her to photograph the deep end of my throat and send this pic as far wide as USA, Briton, Australia, India and everywhere else.
That long thingy that's crooked is normal. I was born with it !! How apt, the thingy is pointing to the tonsils. ( what is that called BTW?)

        The following Saturday 13th Jan 2012 I checked in to Assunta Hospital and got ready for the operation the next day. Sometime during the night, the Pastoral Care Service paid me a visit and offered me soothing advice and if I needed someone to talk to I could call them for help. Wow...what a great gesture, I really appreciated it. Mentally I was very calm and physically I was very relaxed.

        The next day it was fast and furious. Nurses were taking the BP and it was 78/130 with a heart beat of 57, every other 15 minutes or so. Questions on allergy and verification of name and the procedure I was going in for ( this is CRM hospital style, VERBALISE VERIFY MONITOR).

        By 10:30 it was all over and the nurse woke me up. I felt really good, not much pain and so I asked her to let me see the tonsils that they plucked out. She bent down and picked this container that had a piece of flesh that I readily recognized !! It was my tonsils and it was huge. I looked at it with amusement and with an insensitive mind. The rest of the day was post operation recovery. My wife, Chris as we know her or Sarah which others know her came visiting. I was up and about at 1500 hrs. Azlan and Annable came to say hi as well and brought welcome cheer. Swallowing was a bit difficult, so I spat out anything and every thing that accumulated in my mouth. Each time I did that I closely watched for any traces of blood. Modern miracles of surgery leaves very little bleeding, do not know how they do it?

      The next day I was ready for discharge. The bleeding had stopped completely, I was feeling good and I packed all my gear and waited for Dr to give the final nod of OK. Around 12:30 he came and gave the all clear signal. The biopsy results will take 4 days. I was full of confidence and went back to work after 10 days. Wow...it felt so great to be flying again.