11 November, 2009 Wednesday
Everytime before the visit to the oncologist, I will go to NCC 1 or 2 days earlier for blood test and Dr Toh will review the blood test results with me during consultation. The feeling is always like a primary school girl, earnestly waiting for her test results.
The tumor marker has jumped to 284, as expected since I was off the chemo drugs for 2 weeks. So, Dr Toh told me to resume my regime. I told him about my chest seizure and chest pain. Had a X-ray done, but nothing shows up. Well, not sure whether this is good thing or not, but I still do not have answer to explain where I am having chest pain for almost 2 months.
Since the discharge from the hospital stay, my appetite deteriorates, especially during dinner time. Tend to get nausea feeling in the midst of dinner, despite I have taken anti-vomnit medicine. Also, I go to the toilet more frequently for big business. Not daihorrea, but usually in small quantity and it irritates me that I have to wash the wound each time I do big business. Now, I don't even dare to pass wind as I am not sure what would be the output. (Sori, a bit gross to discuss this here. Hope you won't puke out your food)
I am going to Japan again on 21 Nov for my 2nd pilgrimage, bringing my gal along. I was thinking very hard if I should go for H1N1 vaccination jap. No doctor can answer my questions, as this is a new drug and there is not enough information on the possible side effects or consequences to cancer patients who are still on treatment. Really troubled. Don't know what to do.
NCC has finally caught up that I stayed in the private ward (4 bedder) for all my hospital stays, so now I am being classified as non-subsidised patient. The savings foregone will be gst on the invoices, 50% on lab test and higher consultancy fees. I asked the doctor what can be done. He said I would need to see a medical social worker. I think forget about about it, since there is not much savings in the first place and the heavy costs are the chemo drugs and counter drugs which are not subsidised anyway. So friends, one day I may raise a fund raising exercise to fund my treatment, since I will be on half pay from next month onwards. Ha! Ha!
Tuesday, November 10, 2009
Sunday, November 1, 2009
"Hotel stay"
1 November 2009, Sunday
I was just discharged from SGH today. Was admitted on Wednesday when I had appointment to see my surgeon and he told me that I need to go under the table again for the same problem. He gave me some medical jargon "FIA" which I have no time to research. He said that if I don't it earlier, the infection would get worse. After having the previous experience, I agreed on the spot.
I have been having discharge from the wound since my last hospital stay in late Aug. In mid October, the infection flare up and I went to see GP. It only solved the problem temporarily for about 1 week and the infection flare up again. The night before, there was even blood discharge. So, no choice, had to do another surgery again. The surgeon said that this problem is quite common. So pray hard that if you have a pus, don't have it next to anus. It has a lot of after "operation" problem.
My mother-in-law calls my hospital stay as hotel stay. Not very pleasant to spend birthday in the hospital. Also, in the midnight of Friday, I was running a fever. The nurse only gave me sponge and cold pack and never gave me panadol that I asked for. Only after the doctors' visit and I told him about it, then I get my panadol. . My eldest sister was very nice. She was almost approaching her workplace and then u-turn back to come to the hospital to accompany me, after hearing that I tear on the phone. The pain was unbearable in the morning at first, with heavy head and fever and nurses not attending to your request plus late breakfast. Everything just seems not right. I only felt more comfortable to see my sister and she bought fish porridge for me for lunch. The hospital food was really lousy that day too! A few friends wanted to visit me and I had to sms to cancel it. Really in super lousy mood.Was drowsy on almost the whole day of Friday and only recover in the night. My hubby visisted at night after work and came with a fruit cake from Bengawan to celebrate my birthday. This brings little cheers to me, coupled with the flowers that I received from my relatives and the fruit basket from the office.
The wound is still quite raw now. I have to monitot it closely. If there is a lot of discharge or blood from the wound or fever returns, I will need to go back to SGH again. Fingers crossed.
One good news that I almost forgot. My tumour marker has dropped to record low of 142! Protein level has also inched up after I pumped protein powder daily. But because of the surgery, the oncologist asked me to stay off from my chemo drugs for 2 weeks. I really hope that the tumour marker will not jump up 200 points like the last time. Will pray very hard for it.
I was just discharged from SGH today. Was admitted on Wednesday when I had appointment to see my surgeon and he told me that I need to go under the table again for the same problem. He gave me some medical jargon "FIA" which I have no time to research. He said that if I don't it earlier, the infection would get worse. After having the previous experience, I agreed on the spot.
I have been having discharge from the wound since my last hospital stay in late Aug. In mid October, the infection flare up and I went to see GP. It only solved the problem temporarily for about 1 week and the infection flare up again. The night before, there was even blood discharge. So, no choice, had to do another surgery again. The surgeon said that this problem is quite common. So pray hard that if you have a pus, don't have it next to anus. It has a lot of after "operation" problem.
My mother-in-law calls my hospital stay as hotel stay. Not very pleasant to spend birthday in the hospital. Also, in the midnight of Friday, I was running a fever. The nurse only gave me sponge and cold pack and never gave me panadol that I asked for. Only after the doctors' visit and I told him about it, then I get my panadol. . My eldest sister was very nice. She was almost approaching her workplace and then u-turn back to come to the hospital to accompany me, after hearing that I tear on the phone. The pain was unbearable in the morning at first, with heavy head and fever and nurses not attending to your request plus late breakfast. Everything just seems not right. I only felt more comfortable to see my sister and she bought fish porridge for me for lunch. The hospital food was really lousy that day too! A few friends wanted to visit me and I had to sms to cancel it. Really in super lousy mood.Was drowsy on almost the whole day of Friday and only recover in the night. My hubby visisted at night after work and came with a fruit cake from Bengawan to celebrate my birthday. This brings little cheers to me, coupled with the flowers that I received from my relatives and the fruit basket from the office.
The wound is still quite raw now. I have to monitot it closely. If there is a lot of discharge or blood from the wound or fever returns, I will need to go back to SGH again. Fingers crossed.
One good news that I almost forgot. My tumour marker has dropped to record low of 142! Protein level has also inched up after I pumped protein powder daily. But because of the surgery, the oncologist asked me to stay off from my chemo drugs for 2 weeks. I really hope that the tumour marker will not jump up 200 points like the last time. Will pray very hard for it.
Sunday, October 18, 2009
I make it!
18 October 2009, Sunday
Yes, officially I cross the 1 year mark! A big pat on my shoulder. Clapping sounds and champagnes popping. :-)
Well, the past few days were also not that smooth sailing. Mywound on my butt got infected again and went to see a GP. He gave me antibiotics, antiseptic wash and cream. Luckily the medicine works. Otherwise, I would have to go back to SGH and get the surgeon to cut the wound and clean the infection.
Recently, I have been getting chest pain almost everyday and there is a particular spot on the chest that if I press, it will be painful. My last ECG and chest X-ray taken about 2-3 weeks ago showed normal. So, I also don't know what happen. Probably when the pain becomes so intense and I am perspiring, then I will check myself into A&E. The last time when I went to the walk-in clinic for the chest problem. I actually prepare a bag of toiletries, in case I was being admitted.
There has been some improvement in the bowel business. I have weaned myself off lactus (it's a medicine to soften the stool) and so far, except for 1 day no business, my bowel department has been working well. Swelling stomach has also improved. Goes to the toilet a little more frequent and with better flow. So, stomach has reduced swelling by a bit, and so is my weight. Within a week, my weight has dropped almost 3 kg. I hope this is all due to the water, but my stomach is still quite big.
I will continue to work hard and looking forward to the 2nd, 3rd, 4th, 5th ...............anniversary!
Yes, officially I cross the 1 year mark! A big pat on my shoulder. Clapping sounds and champagnes popping. :-)
Well, the past few days were also not that smooth sailing. Mywound on my butt got infected again and went to see a GP. He gave me antibiotics, antiseptic wash and cream. Luckily the medicine works. Otherwise, I would have to go back to SGH and get the surgeon to cut the wound and clean the infection.
Recently, I have been getting chest pain almost everyday and there is a particular spot on the chest that if I press, it will be painful. My last ECG and chest X-ray taken about 2-3 weeks ago showed normal. So, I also don't know what happen. Probably when the pain becomes so intense and I am perspiring, then I will check myself into A&E. The last time when I went to the walk-in clinic for the chest problem. I actually prepare a bag of toiletries, in case I was being admitted.
There has been some improvement in the bowel business. I have weaned myself off lactus (it's a medicine to soften the stool) and so far, except for 1 day no business, my bowel department has been working well. Swelling stomach has also improved. Goes to the toilet a little more frequent and with better flow. So, stomach has reduced swelling by a bit, and so is my weight. Within a week, my weight has dropped almost 3 kg. I hope this is all due to the water, but my stomach is still quite big.
I will continue to work hard and looking forward to the 2nd, 3rd, 4th, 5th ...............anniversary!
Lunch
18 October 2009, Sunday
It has been a long while that we are having a meal together as a family. Hubby has been working very late for the past weeks and sometimes, I hardly talk to him other than he asks me if my health condition is ok.
In the morning, hubby fetched us to the temple for the kids' activity in the temple and I stayed back to pray. The ambience is always very different from praying at home and time passes more quickly. My hubby left for his workplace and came back to pick us up.
We had lunch at Candele (hope I have got the right spelling). 2 pots of organic tea, pizza for kids, sandwich for me and pasta and stew for hubby. We also had a strawberry shortcake for dessert. Yummy!
I treasure moments like this. We usually eat homecooked food, as it is always the safer choice and my mother-in-law knows what are the dos and dont's for me. Her cooking is also good, but sometimes after a while, it gets a bit boring (must not let her know that I am "complaining"). I do like to go out occasionally and try out new food. Have not been to ION Orchard and Orchard Central and some other new malls on the street. Feel a bit mountain turtle. But I think, most importantly, is the moment that we share and the togetherness that I treasure the most.
It has been a long while that we are having a meal together as a family. Hubby has been working very late for the past weeks and sometimes, I hardly talk to him other than he asks me if my health condition is ok.
In the morning, hubby fetched us to the temple for the kids' activity in the temple and I stayed back to pray. The ambience is always very different from praying at home and time passes more quickly. My hubby left for his workplace and came back to pick us up.
We had lunch at Candele (hope I have got the right spelling). 2 pots of organic tea, pizza for kids, sandwich for me and pasta and stew for hubby. We also had a strawberry shortcake for dessert. Yummy!
I treasure moments like this. We usually eat homecooked food, as it is always the safer choice and my mother-in-law knows what are the dos and dont's for me. Her cooking is also good, but sometimes after a while, it gets a bit boring (must not let her know that I am "complaining"). I do like to go out occasionally and try out new food. Have not been to ION Orchard and Orchard Central and some other new malls on the street. Feel a bit mountain turtle. But I think, most importantly, is the moment that we share and the togetherness that I treasure the most.
Irony
18 October 2009, Sunday
Life is full of irony. When our health is in good shape, we take it for granted. Look at the number of smokers on the street, young and old, man and women and this includes the male relatives I have in my family. Luckily my hubby is not a smoker. If not, I would have kick him out!
Smoking is one of the cause for many types of cancers and other health problems, but smokers choose to ignore them. I always wonder why smokers burn their money and health away. If there is any smoker out there, please englighten me.
A relative of mine is suspected of having early stage of cervical cancer. But it is so preliminary that the doctor is not giving her any treatment. Only tell her to come back 6 weeks later. She did try the TCM doc whom I visited, but she does not take the medicine regularly. She told her mum that if the cancer really materialise, she will just commit suicide. I have told her that I am a living example of a cancer patient. She has not seen the worse yet. At the early stage and given that it is cervical cancer, she has very high survival rate, but she choose to ignore it.
Another relative is involved in a traffic accident and indirectly caused the deatth of a young girl (19 years old). He stubbornly insisted that he was not at fault. I told him, nonetheless, he had to be responsible for his rash act on the road. At the very least, he should offer prayer for the deceased, so that she can have an easier life in her next life. Till now, he still hasn't do it yet.
Not sure whether is it that I am getting old or what, I really cannot understand the mindset of the 20s. Did our parents have the same problems when we are in our 20s too?
Life is full of irony. When our health is in good shape, we take it for granted. Look at the number of smokers on the street, young and old, man and women and this includes the male relatives I have in my family. Luckily my hubby is not a smoker. If not, I would have kick him out!
Smoking is one of the cause for many types of cancers and other health problems, but smokers choose to ignore them. I always wonder why smokers burn their money and health away. If there is any smoker out there, please englighten me.
A relative of mine is suspected of having early stage of cervical cancer. But it is so preliminary that the doctor is not giving her any treatment. Only tell her to come back 6 weeks later. She did try the TCM doc whom I visited, but she does not take the medicine regularly. She told her mum that if the cancer really materialise, she will just commit suicide. I have told her that I am a living example of a cancer patient. She has not seen the worse yet. At the early stage and given that it is cervical cancer, she has very high survival rate, but she choose to ignore it.
Another relative is involved in a traffic accident and indirectly caused the deatth of a young girl (19 years old). He stubbornly insisted that he was not at fault. I told him, nonetheless, he had to be responsible for his rash act on the road. At the very least, he should offer prayer for the deceased, so that she can have an easier life in her next life. Till now, he still hasn't do it yet.
Not sure whether is it that I am getting old or what, I really cannot understand the mindset of the 20s. Did our parents have the same problems when we are in our 20s too?
Saturday, October 17, 2009
Birthday
17 October 2009, Saturday
13 more days and it's my birthday, which is also my mum's 1st year death anniversary. My next appointment is scheduled on this day as well, but I tell the doctor that I don't want to see him on my birthday. So, he brings it forward to 28 October. Well, he is really an obliging doctor!
So many things have happened in this year. I have gone through many health obstacles and "garang" act (going to China for 2 weeks all by myself). I am really counting my blessing that I am still alive and kicking and typing this blog.
My gal has offered to buy me sushi on my birthday. I told her that we can buy takeaway, which is cheaper. But, she says that I deserve to eat in a restaruant on my special day. Very sweet thought from her. My son is going to buy me a cake. But he is clueless what cake to buy. So, he shows me the brochure from one of the cake shops in Sun Plaza (the nearest shopping mall in my estate) and asks me to choose. But my silly son doesn't realise that all the cakes minimum size is 1.7kg. How can we finish so much??!!
My birthday wish is that I can continue to stay healthy and be able to type this message again same time next year. :-)
13 more days and it's my birthday, which is also my mum's 1st year death anniversary. My next appointment is scheduled on this day as well, but I tell the doctor that I don't want to see him on my birthday. So, he brings it forward to 28 October. Well, he is really an obliging doctor!
So many things have happened in this year. I have gone through many health obstacles and "garang" act (going to China for 2 weeks all by myself). I am really counting my blessing that I am still alive and kicking and typing this blog.
My gal has offered to buy me sushi on my birthday. I told her that we can buy takeaway, which is cheaper. But, she says that I deserve to eat in a restaruant on my special day. Very sweet thought from her. My son is going to buy me a cake. But he is clueless what cake to buy. So, he shows me the brochure from one of the cake shops in Sun Plaza (the nearest shopping mall in my estate) and asks me to choose. But my silly son doesn't realise that all the cakes minimum size is 1.7kg. How can we finish so much??!!
My birthday wish is that I can continue to stay healthy and be able to type this message again same time next year. :-)
Sunday, October 11, 2009
First year anniversary
12 October 2009, Monday
5 more days and I would have crossed the 1st year anniversary. The oncologist said that only 20% of bile duct cancer cross this line and many of them would have been either on wheel-chaired or bed-ridden. Hence, he is quite pleased with my results and I can walk into his clinic unaided.
My latest tumor marker has dropped from 255 (in Sep) to 159. Liver and kidney are still functioning well, although the liver shows some increase in the cell damage and I have some protein deficiency. I hope that the current cocktail of oral chemo drugs will work better and the tumor marker will continue to slide downwards, and not like the earlier treatment, where it drops quite a bit in the first cycle and then stagnant for awhile and bounce back up again. Fingers crossed
This one year has not been easy for me. But of course, there are other cancer patients who suffer much worse side effects than me. I am already very blessed that the cancer cells are still contained within the original spot in the bile duct, liver and lymph nodes and have not spread to the other major organs, given that bile duct cancer is a fast acting cancer. It is suspected that my lungs may also have been infected, but the doctor is still not sure at this point in time. Those new cancer cells discovered during the year are isolated in the liver. I am still "pregnant" with water retention. Doctor has given me water to pee. Not much results yet, but hope that it will work.
Last week, I was in the hospital to visit a friend's husband. He also has bile duct cancer. He had his liver cut in Feb 09, got better for a few months and there is a relapse. He has been hospitalised for 2 months already and the doctor told the family that chemo is out for him now. If his liver stop functioning, he will enter into coma and pass on in a couple of hours. It really sadden me, as we are having the same type of cancer. When he was first diagnosed, it was only in stage 1 and within months, things turn for the worse. I am really very blessed that I started on a higher baseline (stage 4) and still coping well for the time being. I must thank my religion for giving me the strength to carry on fighting this battle.
I also like to thank all my friends for their well wishes during this one year. I will continue fighting and not let the cancer cells have a good time. I have already beaten the odds of 1 to 5. I am targeting to be that 1 out of 20 who survive beyond 5 years from diagnosis.
5 more days and I would have crossed the 1st year anniversary. The oncologist said that only 20% of bile duct cancer cross this line and many of them would have been either on wheel-chaired or bed-ridden. Hence, he is quite pleased with my results and I can walk into his clinic unaided.
My latest tumor marker has dropped from 255 (in Sep) to 159. Liver and kidney are still functioning well, although the liver shows some increase in the cell damage and I have some protein deficiency. I hope that the current cocktail of oral chemo drugs will work better and the tumor marker will continue to slide downwards, and not like the earlier treatment, where it drops quite a bit in the first cycle and then stagnant for awhile and bounce back up again. Fingers crossed
This one year has not been easy for me. But of course, there are other cancer patients who suffer much worse side effects than me. I am already very blessed that the cancer cells are still contained within the original spot in the bile duct, liver and lymph nodes and have not spread to the other major organs, given that bile duct cancer is a fast acting cancer. It is suspected that my lungs may also have been infected, but the doctor is still not sure at this point in time. Those new cancer cells discovered during the year are isolated in the liver. I am still "pregnant" with water retention. Doctor has given me water to pee. Not much results yet, but hope that it will work.
Last week, I was in the hospital to visit a friend's husband. He also has bile duct cancer. He had his liver cut in Feb 09, got better for a few months and there is a relapse. He has been hospitalised for 2 months already and the doctor told the family that chemo is out for him now. If his liver stop functioning, he will enter into coma and pass on in a couple of hours. It really sadden me, as we are having the same type of cancer. When he was first diagnosed, it was only in stage 1 and within months, things turn for the worse. I am really very blessed that I started on a higher baseline (stage 4) and still coping well for the time being. I must thank my religion for giving me the strength to carry on fighting this battle.
I also like to thank all my friends for their well wishes during this one year. I will continue fighting and not let the cancer cells have a good time. I have already beaten the odds of 1 to 5. I am targeting to be that 1 out of 20 who survive beyond 5 years from diagnosis.
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