End of Chemotherapy

The last few sessions had left my dad drained of energy, loss of appetite and difficulty breathing. The specialist had changed his chemo cocktail of drugs, and as explained in my previous posting, it was taking a toll on his health.

Before my dad had his 12th second level chemotherapy, a CT scan was ordered to see whether the development of the cancer cells had been halted in any way. Unfortunately, it shows that improvement, if any, was very minimal.

After consulting the various doctors, close friends and families....after 16 chemotherapy sessions (4 first level + 12 second level), my dad decided he has had enough of chemotherapy. So the relationship with Radiology and Oncology Department HKL remains as a palliative procedure, requiring him to pay a visit every few months. My dad was happy with his decision, and I was happy that the old man was happy. I had always, in the past, decided on all his medical decisions, but this time I let him decide on his own.


Sour Sop or "Durian Belanda"

We have now embarked on a new pathway, that is of alternative medicine. No...its not about witch doctors, voodoo dolls or the local Tok Bomoh.... its taking the natural pathway... fruits, berries etc. During our numerous visits for his chemo sessions, we heard tips and advices from numerous cancer survivors at the clinic. Among the consistent tip is to take Sour Sop on a daily basis, or locally known as 'Durian Belanda'.

After he started taking the fruit on a daily basis, his cancer marker showed an improvement, and this was after his 10th chemo session during which his cancer marker was increasing all the time. A myth or coincidence? Maybe...but quite a number of cancer survivors attest to the power of the Sour sop.

Maybe that is why the 'Durian Belanda' is quite expensive nowadays. For those of you who have large plots of unused land, maybe this would be a good business venture :)

Reality Hurts

It's been months since I last blogged. It does not mean nothing interesting happened in my life, but I was quite occupied between teaching,work and sending my dad for his chemotherapy. He has just completed his 12th second level chemo, plus the 4 first level chemo, totaling 16 chemotheraphy sessions. Until today, I had forgotten about his 'true' condition, subconsciously hoping that the chemotherapy was doing it's magic.   

The person that snapped me back into reality was a good doctor friend who took time to call me and reminded me of the truth. You see, as it was his 12th session, he was asked to do a CT Scan to determine the extend of the damage done by the cancer and whether the chemotherapy actually worked. I guess my friend saw the result, and it's not good. The cancer is stage 4, has spread to his lungs and liver, and it's terminal.   

Even though I had watched how life was literally sucked from my dad, from happy, strong old man to a frail and weak old man, I had always told myself that it's the side effects of chemotherapy, that inside the chemotherapy was doing it's magic. I believed that so much until I forgot that he was a stage 4 cancer patient and that the cancer cells were eating him up.   

My friend had asked me to prepare myself for the worst, to spend every available time with my old man. The problem that is on my mind is how to tell my mum and my siblings. They too have the right to know the truth, but I am not sure whether knowing the truth would be best for them or my dad. No matter how many times I had been faced with death while rescuing people, it is not an easy subject to face, much more when it involves someone dear to you.

I hope and I pray that I have the endurance, perseverance and strength to go through all these to the end, to carry out my tasks and responsibility as the eldest son. The feeling of helplessness is simply overbearing.   

It's true what some people say, chemotherapy is a bigger killer than the disease.

2nd Level Chemo...the saga continues

The reason why I decided to blog about my dad's condition is hopefully it can be a informative source for anyone who has colon cancer. Hopefully, it would ease them to face this condition that saps the live out of a human. Continuing about my dad's fight cancer saga....

After his 4th chemo in Selayang Hospital, as mentioned in my previous entry, my dad was referred to HKL (Hospital Kuala Lumpur, formerly known as General Hospital) for 2nd level chemo. My dad was not in favour of going to HKL, due to the bad experiences from my late sister's case.

For the first experience with the Oncology Department in HKL was an eye opener for him. Though a bit cramped with people, the attending specialist was pleasant, soft spoken and full of empathy. Upon checking my dad, she was surprised to see the condition of my dad's hands. She was more surprised to find out that there was no medication prescribed for it.

She then recommended that a 'Chemo Port' be inserted to ease the infusion of the chemo. You have to purchase the device from the pharmacy though as its not provided for by the hospital.

Within days, the minor operation was conducted. The operation takes less than an hour, but you have to wait for your turn. My dad was admitted at 10am, the operation only done at 4.30pm. after the operation, Mr Tan, the surgeon told my dad that he can be discharged. Due to the incompetent ward MO who was unsure how to discharge a patient, we had to wait until 10.30pm when the specialists conduct their ward rounds. Instead of having my dad discharged, that MO chose to follow the specialists around the wards and only discharged my dad after that. Even the specialists were confused as to why my dad was still there.

After discharged, we had to go to pick up the medicine from the pharmacy ourselves. When I finally sent my dad back home, it was close to midnight. That MO has to wisen up to prioritise for 'warga emas' who has just completed surgery as compared to 'in-house' patients.

During our next visit, we got some good news. There is an option of having the chemo infusion at home, thus no more hospital stay. My dad jumped at it the moment the specialist has just completed her sentence. Seeing my dad's eagerness, I agreed to it. For this option, we have to purchase the disposable infusion pump (single use) ourselves as it's not supplied by the hospital.

The pump has no batteries or moving parts and operates by pressure. It infuses very slowly through his Chemo Port. So now the routine is on Friday to take blood sample. The following Monday from 9am - 4pm, he takes his infusion at HKL. Then they prepare his pump and attach it to the Chemo Port. After that he can go home and on Wednesday at 12pm, I send him to HKL to detach the pump. The cycle is every 2 weeks.
So far he has gone for 1 cycle of the 2nd level Chemo. Alhamdulillah, there are no severe side effects.

Why I haven't blog...Part 3 (Final)

1 month on, and there we were, my dad and I, listening to Mr R, the specialist on Chemo. Mr R thought that my dad could not understand English, thus he was very blunt and straight forward in explaining about my dad's medical condition. He was saying things like "It is bad as its Stage 4 cancer and has spread to his liver and lungs", "We don't know how long he will live, but its gonna be worst" etc etc. I looked at my dad but he looks cool. Then I interrupted Mr R and told him "My dad understands English. You can explain directly to him". Mr R went red in the face, poor dude, but we understood that he meant well.

There are a few options in getting Chemotherapy. Option 1 is a daily dose but he has to come weekly for it, Option 2 is a 48 hours dose but on alternate weeks, Option 3 is 5 straight days in the hospital on a monthly basis. There is now a tablet form also that you can take at home but its a bit costly. After discussing with my dad, we chose option 2.


The good part was, treatment is at Ward 4C, a 3rd class ward, but for chemo, he would be placed in an isolation room, similar to a 2nd class. The first time everyone was nervous, including myself, coz we didnt know how my dad's body would react to the drug. The 3 days in the ward was with little interruption from the nurses, its as if we were just temporary visitors. First day went by, and apart from slight increase in body temperature, nothing else happened. Same goes for the rest of the stay. I was grateful that there were no serious side effects.

The 2nd visit was easier, with the ward already waiting for my dad to come in. A special mention to my dad's attending physician, Dr Farhan, a soft spoken Kelantanese, whom immediately clicked with my dad. He was in-charge for administering my dad's medication.

We have now come to our 4th visit next week. During the last visit, Dr Farhan said that the cancer markers were still increasing despite the Chemo. Thus, maybe my dad needed a much stronger 2nd level Chemo but could only be administered in HKL (Kuala Lumpur General Hospital). A stronger cocktail of drugs would certainly bring some side effects, I am sure.

My dad and I has gotten much closer since then. I was there by his bedside no matter how tired I had worked during the day because I know that the few moments together were very precious to me and him. Everytime on our journey back home, we would stop by our favourite Mamak restaurant, where we would have father - son conversations over lunch. The topics has gotten heavier though, and I try to digest them while trying to put on a brave face, not to show my sadness.

I am thankful to the Al Mighty coz I am blessed with the means and time to be with my dad. To me, it's the greatest gift of all. I hope and I pray that I am given the courage, perseverance, patience, time and the means to go through what's ever coming in the future.

For those of you who have yet to bond with your old man, now is a good time to start.

Why I haven't blog...Part 2

Dad's room in Ampang Hospital

A second opinion was requested and my dad was transferred to Selayang Hospital, reputably the cancer centre amongst Government hospitals. The surgeon in-charge of my dad's case, Mr Raj immediately put my dad's fears at ease. He was very courteous, professional and most of all, a knowledgeable and experienced surgeon. The prognosis was not good, he has colon cancer. Within days, he had scheduled my dad's surgery. There were also indications that the cancer has spread to his liver and lungs. He stressed that the surgery was not a cure, but merely to 'improve his quality of life'.

The night before, my mom stayed overnight together with me. At that point, I didn't know how or what to feel. My dad was understandably a bit nervous, but the sleeping pill given to him helps. The next morning, very early, the nurses came to ask him to get ready as he was the first on the list. The journey from the ward to the operating theatre seems a long one. We said our goodbyes and they wheeled him in. The look of sadness on my mum’s face was heart wrenching, and slowly I put my hand around her and lead her back upstairs to my dad’s room.

Somehow we waited and waited, and yet there was no news about my dad. Time passed by …1 hour, 2 hours…5 hours. Could something have gone wrong? Asking the nurses didn't help either, coz every time they gave me the same standard answer..."nanti kita bagi tau". Luckily I knew someone who works in ICU, who then did some investigative work for me. "Belum lagi Rul, masih dalam OT" was the answer. That didn’t help. He called again 30 minutes later to tell me my dad was in recovery room.

Dad post ops

Still not getting any news from the nurses, I went down to ward 4A, the surgical ward for post ops cases. I went alone to ensure that everything is OK before my mum comes down. There he was, on the bed, on Epidural. The look of discomfort was on his face, but being dad, he didn’t complain. Luckily at the same time Mr Raj came by. My dad whispered that he was in great pain. The anaesthesiologist was called in and the Epidural dosage was increased. After that he was more at ease.

The next day he was better, probably free from the hallucinating drugs. He was no longer in pain and you could almost see the energy returning back to his body. Surprisingly, on the 4^th day, Mr Raj discharged him from the hospital. When I arrived that afternoon (you cannot stay at the wards after 7am until afternoon), he was all packed and ready to go…hahaha.

My 'bed' brought from home

Throughout the ordeal, I was there to look after my dad, as I was 'more independent' than my siblings. I am thankful to have a very understanding wife as I was away most of the time. Ampang Hospital was the best, as I had brought my camp bed along as the picture above. Selayang Hospital was still a bit conservative, as they still have the nursing/medical staff from the older generation, thus I had to make do with the hospital armchair as a bed.

...to be continued (Final part)

Why I haven't blog...Part 1

It has been a long time since I had updated my blog. The main reason was, earlier on this year, my dad had some medical problems. One day, I received a call from my sister saying my dad was some serious stomach pains. You see my dad is quite reserved, funny and one who has above normal tolerance to pain or disgusting people (unlike his son haha). So when he is groaning in pain, it means that it was a above normal level of pain. Administering some skills I learned as a rescuer, the pain subsided when he finally went to the toilet. My dad refused to go to the hospital, so since his pain has subsided by about 90%, I decided to have a pep talk with him later.

The reason why my dad refused to go to the hospital was more of a traumatic emotional scarring by the death of my youngest sister. My sister was born much later than me and my other 2 siblings, about 7 years later, thus she was the baby of the family. She spent the whole of Ramadhan in Kuala Lumpur General Hospital (HKL) with a condition that baffles the doctors. So it was a barrage of tests, including a trial and error application of medicines. Everyday without fail, my parents would visit her, and everyday they carried a change of her clothes, just in case the doctor would say "you are well and discharge". At that time, medical care at public hospitals were quite bad. Facilities were limited, patients were overwhelming and the medical staff were overworked. All these leads to nasty, foul mouthed nurses, whom during my late sister's tenure in the ward, had unleashed some of these unprofessional attitude to her and my parents. My dad had prayed for her to be discharged in time for Raya, and true enough, the doctors discharged her a few days before Raya. My parents were happy.

However, on the second day of Hari Raya, she had a relapse of her symptoms and had to be brought back to the HKL. To cut the story short, that was to be her last Hari Raya with us. God had answered my dad's prayers, but her time was up. We were not prepared for her sudden demise. Everyone was shattered, and me being the eldest son, had to clench my teeth (to put on a 'strong face') and arrange for her burial. She died at the age of 15 years old. Ever since then, my parents had avoided going to hospitals, especially HKL.

2 weeks later, I had the opportunity to have a father-son chat with my dad. Finally he agreed to a check up at Ampang Hospital. With assistance from Ms Lynn, an appointment was arranged within days. As expected, he was admitted and a barrage of tests were performed on him too. While waiting during the Colonoscopy, a surgeon was called in. "This can't be good" I thought to myself. Sure enough they found a tumor which almost closed up his colon. An immediate surgical procedure was the only option.

My dad's room in Ampang Hospital

....to be continued

My timing shucks

Haha I have been getting messages from some of you...even a few nasty ones like scolding me for wallowing in self pity etc etc. At first I was confused as to why they reacted that way. After all I blog only about my medical condition. Nothing that resembles self pity in there.

Then one of them mentioned about the video. Video? Hmmm? Then it dawn on me...the posting before that...the music video of 'Kaer - Izinkan ku pergi'. The video clip showed the story of a dead man singing to his girlfriend...kind of like that movie 'Ghost' starring Patrick Swayze.

Actually, there is no connection between the 2 postings. I am not feeling suicidal or thinking about death. The music video is for another story, unrelated to the medical story. By sheer coincidence, and poor timing, it looked like its inter-related.

Sorry guys and gals for ruffling a few feathers unintentionally.....anyway, it goes to show how caring you people really are. Cheers.

Why I am cranky?

I just received my results 2 days ago of the MRI scan that I did earlier. The first thing that the doctor told me was she is bringing forward my appointment from 20th to 11th. I had a bad feeling. Then she told me that she was referring my case file to Hospital Kuala Lumpur (HKL) to meet a neuro surgeon, I had a worsening feeling. When she took the trouble to get an appointment at HKL on 14th, I knew it was really bad. Though an operation need not be the ending to this story, its there as one of an option...and it climbing higher on the list of options for KAZ.

I had mixed feelings, when I heard the news on my phone. The world kind of stopped for a few seconds. Every sort of scenarios came into my mind. If you never been there, you wont know the feeling.

People tell me I should have seek medical attention sooner. Well I did, but doctors brushed it off as me being over exaggerating my condition. Well, now I am in pain and I am out of painkillers and I am one cranky person.

For once in my life, I have to learn to prioritise myself. I don't have time to entertain or please anyone else because at the end of the day, its just me. I need motivators, positive thinkers, honestly caring people, people who would cheer me up. I don't need self centred people, who would only stay if things were good but leaves the moment it turns bad. Now I get to see the real person behind all of them....

Awww Shucks

Today I went to see the specialist. She was concerned with the numbness in my leg and also the fact that the pain killer (200 mg of the strong stuff) has no effect what so ever on me. So, in 2 weeks time, I have to do an MRI. The radiographer said it would take 1 hour to finish. Sishh what am I supposed to do in there? Oh ya, I also get a higher dose of that pain killer (morphine like effect)...about 500mg. Yippeee

What is an MRI? Click here to read

My Fears

I had always had this back ache problem that keeps on recurring every now and again. Long hours of standing, sitting or even sleeping in a wrong position would trigger a back pain. Normally, the pain would subside after 2-3 days rest. However, recently it didn't go away. After about 3 weeks of enduring the continuous and ever increasing pain, I went to see a chiropractor. It was a first time for me. After examination which includes x-rays of my spine, the doctor said that there is an indication of a prolapsed disc.

The treatment was more of preventive rather than corrective. My back bone would never be the same again. I then went to get a second opinion from an Orthopedic Specialist friend at a government hospital. Same thing. I was prescribed with a strong dose of painkiller (slightly lower than morphine) and told to do exercises.

About 2 days ago, I started feeling numbness in my right leg. Not a good sign indeed. Today I have an appointment to see the specialist friend again.

What goes on in my head now is understandably fear....the fear of the inability to do the things I love...the fear of of losing the ones I love...the fear of being a cripple. Though not to sound over dramatic, the possibility is there.

As I look through the window of life of a potentially crippled person, I find that I get easily irritated by people around me that has tons and tons of complains about the mishaps that has happened in their lives. Hello...I have much bigger problems here that may affect the way I live in the future...and you are talking about your stress to me? Maybe its because I don't look sick, or because of my built, that people, including the ones I hold very dear to me, didn't even ask me how I am feeling inside. I needed someone to talk to...but there was just no one who would listen. They were too busy thinking about what pisses them off, about their past lives....mostly about how THEY feel.

I am feeling like a lost diver running out of air at 30m depth, without anyone in sight. I was looking for a buddy that would extend to me his or her alternate air source (the spare regulator that every diver carries), but there was none. Its a very uneasy feeling, much worst if you have to face it alone. But no matter what, I have to survive this, just long enough to make sure that my boys would grow up right...to be a better man than what their father was.