8 of us were classmates from pre-u days and have kept in contact ever since.
Di, Flo, Glo, Jes, Lin, Sel, Tra and myself, we called ourselves '8 Fairies'. We have 16 children among us, 8 boys and 8 girls. What a coincidence!
16 Aug, Saturday, the girls arranged to pay me a visit. I hadn't been anywhere except the hospital and my mum's place in a long while and I was itching to go somewhere.
The girls brought me to Seletar Country Club. What a beautiful place! And what fresh air! It was quite a distance away from the main road and the drive in brought back memories of old Singapore, so different from the concrete jungle that we are so used to now. It really brought back feelings of nostalgia.
We spent some happy hours doing 'girl talk', and spent some time in the jackpot room too. One surprised us by being quite a real pro at the machines and not surprisingly, she walked out with winnings. Two others tried their hands and lost. You win some, you lose some. Better luck next time.
Other than my 7 fairies, I have another set of classmates all the way back from primary school. All from the same class in primary six, and some have been classmates since primary one. And we also have among us, our class form teacher. Yessir! How about that!
Most of us are still recognizable to one another. We aged gracefully.
We were supposed to have celebrated our big 5-0 (that's right - half a century old) last year, unfortunately, our organiser was too committed. No problem, we will probably try again somehow.
Whenever we have a gathering, we always have so much fun talking about the old times. But of course, other than our ex-teacher's wife who didn't seem to mind our sometimes wild talk, we left all our spouses and children at home so that when we let our hair down we don't get disapproving looks.
Sunday, 31 August 2008
Wednesday, 27 August 2008
X-ray & Blood Tests Results of 25 Aug
27 Aug 2008, Wednesday - Just back from my physiotherapy session. The lymphedema on my right arm has improved somewhat. When I had my session on 19 Aug, I bought a sleeve and a glove. These are firm fitting and the material is thick and stretchable like those of stockings. The sleeve and glove helped, but whenever I have my arm down during the day, a bulge will form on my upper arm on the inner side just above the elbow. I had to remove the sleeve and glove and gently massage it to relief the bulge. It cannot be left alone the protein deposit will harden and the bulge will probably become permanent.
The physiotherapist also measured both arms for comparison. I had thought she was going to use a tape, but no, it was some kind of machine with sensor, it's called a perometer. I grabbed a handle on the base plate in the middle of a rectangular frame and the frame with sensors all round moved up along the whole length of my arm, and the results were printed. My right arm was 600 points bigger than my left arm.
Collected the results for my chest x-ray and blood tests.
Chest x-ray stated that there is increase right-sided pleural effusion while the left side is stable. The right lower zone of the lung has collapsed. It also suspected that my right 7th rib has metastasis, but I don't think so as earlier x-rays showed a fracture and that the fracture has healed.
Cancer marker down to 12.7.
I had been reading Q and A on John Hopkins site and learnt that bone and liver metastases could come and go and are unpredictable. Also learnt about the signs of impending doom, like dark urine, whites of eyes turning yellow, extreme lethargy and sleeping all the time.
Several parts of the blood vessels on my left arm had been burnt by chemo and I have found out that they cannot set the iv plugs on these parts again otherwise the blood vessels could burst. Shows how toxic the chemo is. And that's why my onco insisted that I used a central line.
The physiotherapist also measured both arms for comparison. I had thought she was going to use a tape, but no, it was some kind of machine with sensor, it's called a perometer. I grabbed a handle on the base plate in the middle of a rectangular frame and the frame with sensors all round moved up along the whole length of my arm, and the results were printed. My right arm was 600 points bigger than my left arm.
Collected the results for my chest x-ray and blood tests.
Chest x-ray stated that there is increase right-sided pleural effusion while the left side is stable. The right lower zone of the lung has collapsed. It also suspected that my right 7th rib has metastasis, but I don't think so as earlier x-rays showed a fracture and that the fracture has healed.
Cancer marker down to 12.7.
I had been reading Q and A on John Hopkins site and learnt that bone and liver metastases could come and go and are unpredictable. Also learnt about the signs of impending doom, like dark urine, whites of eyes turning yellow, extreme lethargy and sleeping all the time.
Several parts of the blood vessels on my left arm had been burnt by chemo and I have found out that they cannot set the iv plugs on these parts again otherwise the blood vessels could burst. Shows how toxic the chemo is. And that's why my onco insisted that I used a central line.
Tuesday, 26 August 2008
Up-To-Date
I have now brought my blog up-to-date.
Thanks to Niki of HCA Hospice Care who nudged me to work on my blog, otherwise I would still be procrastinating, and then I would have nothing to share as I realised that I am now having trouble recalling stuff.
With my blog up-to-date now, I can concentrate on the other areas that I have neglected.
For one, I am going to finalize my will. It's not that I have tons to leave to my children, but I want to be assured that in the event I am not around, at least, they have a roof over their heads. And also whatever little that I have left over, if any, from my medical expenses.
Secondly, I want to plan my own funeral. I am not being pessimistic. I looked at my husband and children and I fear that if I should drop dead one day, they may not know what to do, like the type of religious ceremony that I want, or what to do with my ashes, or which photo should be used. About photos, I am waiting for my hair to grow long enough so that I can have a few shots that I can choose from, or perhaps I don't have to wait and just make do with the wig that my neighbour has lent to me. I intend to draw up a list of things that needed to be done when the time comes.
This list and the will will be put together with all other important documents, so that when the time comes, all they need to do is get hold of this lot and, voila, everything is there and they don't need to crack their heads.
Another thing to do is spring clean the house and throw out all the junks and whatever skeletons in the cupboards. This is going to save my family a lot of headaches deciding what to throw and what to keep. This is going to be real slow and time consuming as I can't bend, can't squat and can't exert myself now.
Thanks to Niki of HCA Hospice Care who nudged me to work on my blog, otherwise I would still be procrastinating, and then I would have nothing to share as I realised that I am now having trouble recalling stuff.
With my blog up-to-date now, I can concentrate on the other areas that I have neglected.
For one, I am going to finalize my will. It's not that I have tons to leave to my children, but I want to be assured that in the event I am not around, at least, they have a roof over their heads. And also whatever little that I have left over, if any, from my medical expenses.
Secondly, I want to plan my own funeral. I am not being pessimistic. I looked at my husband and children and I fear that if I should drop dead one day, they may not know what to do, like the type of religious ceremony that I want, or what to do with my ashes, or which photo should be used. About photos, I am waiting for my hair to grow long enough so that I can have a few shots that I can choose from, or perhaps I don't have to wait and just make do with the wig that my neighbour has lent to me. I intend to draw up a list of things that needed to be done when the time comes.
This list and the will will be put together with all other important documents, so that when the time comes, all they need to do is get hold of this lot and, voila, everything is there and they don't need to crack their heads.
Another thing to do is spring clean the house and throw out all the junks and whatever skeletons in the cupboards. This is going to save my family a lot of headaches deciding what to throw and what to keep. This is going to be real slow and time consuming as I can't bend, can't squat and can't exert myself now.
In All Ignorance
I realised that in my fight against cancer, where it had spread so much and caused me so much problems, having a poor knowledge of the anatomy worked to my disadvantage.
Lungs - I didn't know lungs have lobes. I do know liver has lobes, though I don't know how many. My CT chest report mentioned right middle and lower lobes. Lobes? Is it referring to lungs or liver? The other parts of the report looked like it was referring to lungs, but why lobes? I googled and found that lungs do have lobes. Left lung has 2 segments (lobes) and right lung has 3 segments or 3 lobes. Thanks to the internet.
I had thought that the fluid was outside my lungs and in the chest cavity. I didn't know that there is a pleural lining (sac) protecting the lungs. I studied my reports and googled and finally got the records straight - the fluid is in the pleural lining. Then people said 'water in the lungs', and I thought I also had water in my lungs, that's why I am coughing up so much phlegm. So, I asked my onco if the water is in my lungs also, why don't they take it out? And she said, no lah, the water cannot go into your lungs. Duh? So, it's not water in my lungs, but water in the linings of my lungs. But, if the fluid is outside my lungs and in the pleural linings, then how did I cough out so much phlegm? I better go google some more.
Metastases to the liver and bones - I asked the onco why are they only checking for CA 153 (cancer marker for breast cancer) when I have cancer cells in my bones and liver too. I had known that there are different cancer marker tests for bones and liver. Onco said that the cancer cells in my bones and liver are those that spread from my breast cancer and did not originate from the bones or liver itself. Oh! Okay, now I know.
Heart - In the course of studying my reports, I also found that there is a lining round the heart called the pericardial lining and that the fluid can go in there too.
It didn't matter what my onco will think of me or my ignorance, I needed answers and to get them I had to ask.
Lungs - I didn't know lungs have lobes. I do know liver has lobes, though I don't know how many. My CT chest report mentioned right middle and lower lobes. Lobes? Is it referring to lungs or liver? The other parts of the report looked like it was referring to lungs, but why lobes? I googled and found that lungs do have lobes. Left lung has 2 segments (lobes) and right lung has 3 segments or 3 lobes. Thanks to the internet.
I had thought that the fluid was outside my lungs and in the chest cavity. I didn't know that there is a pleural lining (sac) protecting the lungs. I studied my reports and googled and finally got the records straight - the fluid is in the pleural lining. Then people said 'water in the lungs', and I thought I also had water in my lungs, that's why I am coughing up so much phlegm. So, I asked my onco if the water is in my lungs also, why don't they take it out? And she said, no lah, the water cannot go into your lungs. Duh? So, it's not water in my lungs, but water in the linings of my lungs. But, if the fluid is outside my lungs and in the pleural linings, then how did I cough out so much phlegm? I better go google some more.
Metastases to the liver and bones - I asked the onco why are they only checking for CA 153 (cancer marker for breast cancer) when I have cancer cells in my bones and liver too. I had known that there are different cancer marker tests for bones and liver. Onco said that the cancer cells in my bones and liver are those that spread from my breast cancer and did not originate from the bones or liver itself. Oh! Okay, now I know.
Heart - In the course of studying my reports, I also found that there is a lining round the heart called the pericardial lining and that the fluid can go in there too.
It didn't matter what my onco will think of me or my ignorance, I needed answers and to get them I had to ask.
How Much Is Enough?
I did not managed to get all my full blood count reports. Of those that I have, they have shown my cancer markers to be (normal is 25) :
4 Dec 2007 - 69.3
15 Feb 2008, before chemo - 309
31 Mar 2008, before 3rd and last part of 2nd dose - 48.1
5 May 2008, before 4th dose - 20
26 May 2008, before 5th dose - 18.8
14 Jul 2008, after 5th dose - 16
Note : I had to have my blood tested before every chemo to check that my white blood cell count is not too low.
I always wonder how much chemo is enough for different individual. But I guessed as far as the oncos are concerned, their target is cancer cells and they will go all out to eliminate them. Nevermind the side-effects and complications, as they are not so life threatening.
My side-effects were normally delayed. Sometimes, about 2 weeks after the chemo, I started feeling very itchy on my feet, especially on the soles. My onco said that was caused by the carboplatin.
Once, my finger tips were so painful to the touch. It was especially difficult when I had to button my jeans.
The nails on my finger had also turned opaque. They looked as though they were going to drop off. I kept trimming them as they grow and eventually managed to trim away all the opaque parts. Even now, the nails do not look healthy. I have white lines and ridges across them horizontally.
I had felt a lot of improvement after the 1st 2 doses. I was still fine after the 3rd dose, even though I started having water retention.
After the 4th dose, I gradually started feeling more and more tired. The water retention had affected my legs as well. The skin on my legs felt tight and when I used my fingers to press the area around the ankles, they left marks.
By the time, I had my 1st half of the 5th dose, I was beginning to feel breathless. My legs were weak. I could not squat and if I squatted, I would end up sitting on the floor. When I sat on the floor, I could not pull my legs in to sit cross-legged.
After I completed my 5th dose, whenever I got up from a sitting position, I could not walk straightaway as my thighs hurt. At rest, even with my feet raised, my heels hurt the moment I put my feet down and walked.
My right arm broke out in rashes. I had blisters on my hands and they itched. It was a sign that I was having problems with my liver. My liver could not handle all the toxins from the chemo.
My kidneys are also affected and my back hurts.
I had wanted to stop at 3 doses, but my onco wouldn't allow. I had been considering the fact that I had been so sick before chemo and also that my was a relapse that had spread to my bones and liver, so I lacked the confidence to push for it.
After the 4th dose, I wanted to stop again, but my onco said, no bargaining, it's the board's decision. If I am not mistaken, that decision was made before I started chemo way back in February. All along, my response and progress had been so good, didn't the board think that this warrant another discussion? Who sits on the board anyway? Isn't there even a TCM practitioner there who can decide based on the patient's condition and reactions also instead of just on the blood tests alone?
Most of the people around me went like, just go ahead and finish it, afterall it is the last one or two. They are like the advocates of chemo and when I voiced my concern, I must have sounded like a detractor to them.
4 Dec 2007 - 69.3
15 Feb 2008, before chemo - 309
31 Mar 2008, before 3rd and last part of 2nd dose - 48.1
5 May 2008, before 4th dose - 20
26 May 2008, before 5th dose - 18.8
14 Jul 2008, after 5th dose - 16
Note : I had to have my blood tested before every chemo to check that my white blood cell count is not too low.
I always wonder how much chemo is enough for different individual. But I guessed as far as the oncos are concerned, their target is cancer cells and they will go all out to eliminate them. Nevermind the side-effects and complications, as they are not so life threatening.
My side-effects were normally delayed. Sometimes, about 2 weeks after the chemo, I started feeling very itchy on my feet, especially on the soles. My onco said that was caused by the carboplatin.
Once, my finger tips were so painful to the touch. It was especially difficult when I had to button my jeans.
The nails on my finger had also turned opaque. They looked as though they were going to drop off. I kept trimming them as they grow and eventually managed to trim away all the opaque parts. Even now, the nails do not look healthy. I have white lines and ridges across them horizontally.
I had felt a lot of improvement after the 1st 2 doses. I was still fine after the 3rd dose, even though I started having water retention.
After the 4th dose, I gradually started feeling more and more tired. The water retention had affected my legs as well. The skin on my legs felt tight and when I used my fingers to press the area around the ankles, they left marks.
By the time, I had my 1st half of the 5th dose, I was beginning to feel breathless. My legs were weak. I could not squat and if I squatted, I would end up sitting on the floor. When I sat on the floor, I could not pull my legs in to sit cross-legged.
After I completed my 5th dose, whenever I got up from a sitting position, I could not walk straightaway as my thighs hurt. At rest, even with my feet raised, my heels hurt the moment I put my feet down and walked.
My right arm broke out in rashes. I had blisters on my hands and they itched. It was a sign that I was having problems with my liver. My liver could not handle all the toxins from the chemo.
My kidneys are also affected and my back hurts.
I had wanted to stop at 3 doses, but my onco wouldn't allow. I had been considering the fact that I had been so sick before chemo and also that my was a relapse that had spread to my bones and liver, so I lacked the confidence to push for it.
After the 4th dose, I wanted to stop again, but my onco said, no bargaining, it's the board's decision. If I am not mistaken, that decision was made before I started chemo way back in February. All along, my response and progress had been so good, didn't the board think that this warrant another discussion? Who sits on the board anyway? Isn't there even a TCM practitioner there who can decide based on the patient's condition and reactions also instead of just on the blood tests alone?
Most of the people around me went like, just go ahead and finish it, afterall it is the last one or two. They are like the advocates of chemo and when I voiced my concern, I must have sounded like a detractor to them.
Cross Roads
I feel that I have come to a cross junction again.
On the road leading left is the traditional and natural therapy. To the right is the conventional and pro chemo. From this junction, I cannot see the end. I am aware that at the end of either way, it will branch off to survival or suffering and death.
I would have preferred to tread the middle path where there is a balance between traditional/natural and the conventional. Where both sides can work together for the sake of patients. Unfortunately this is not possible as I can see a wall blocking the road and a sign saying 'dead end'.
I realised that people like me who wanted a balance will always come to cross junctions. It would have been easier if I had just stuck to one side, whatever the ending will be.
If I tell the traditionalist that my onco wanted me to go through more chemo, he will probably say that by doing that, my onco will be doing me more harm. I told the onco that I wanted to rely on the traditional therapy and she said, "I tell you, it doesn't work".
It's not that I don't want to listen to the onco, it's just that I think that conventional practitioners tend to overkill.
With chemo, the results are almost immediate, but the damage is also great, whereas traditional medicine worked very slowly.
My onco is now spreading out her appointments with me. I will only see her next on 3 Nov. But she did say that if I decided to go for chemo, I should just call and make an appointment to see her. I could tell by the way she stretched the appointments that I am not in immediate danger.
It's time for me to get a second opinion.
On the road leading left is the traditional and natural therapy. To the right is the conventional and pro chemo. From this junction, I cannot see the end. I am aware that at the end of either way, it will branch off to survival or suffering and death.
I would have preferred to tread the middle path where there is a balance between traditional/natural and the conventional. Where both sides can work together for the sake of patients. Unfortunately this is not possible as I can see a wall blocking the road and a sign saying 'dead end'.
I realised that people like me who wanted a balance will always come to cross junctions. It would have been easier if I had just stuck to one side, whatever the ending will be.
If I tell the traditionalist that my onco wanted me to go through more chemo, he will probably say that by doing that, my onco will be doing me more harm. I told the onco that I wanted to rely on the traditional therapy and she said, "I tell you, it doesn't work".
It's not that I don't want to listen to the onco, it's just that I think that conventional practitioners tend to overkill.
With chemo, the results are almost immediate, but the damage is also great, whereas traditional medicine worked very slowly.
My onco is now spreading out her appointments with me. I will only see her next on 3 Nov. But she did say that if I decided to go for chemo, I should just call and make an appointment to see her. I could tell by the way she stretched the appointments that I am not in immediate danger.
It's time for me to get a second opinion.
Chemo Again?
25 Aug 08, Monday - Appointment with Dr Wong.
Before I saw her, I had another x-ray, and this x-ray showed that the fluid in my right lung is back again, though not as much as before the tap nearly 2 weeks ago. By now, I could more or less tell if the fluid is back
I had wanted my left lung tapped, but Dr Wong said to hold on for the time being. She said frequent tapping is not a solution as I may have air sucked in or have an infection.
She suggested that I should go for chemo again, but this time round the drug will not be so strong. I wanted time to consider as I am still having the side-effects of the previous chemo rounds.
When I had the tap on 13 August, they sent some samples for culture and testing. The results came back negative. But Dr Wong said the results might not be very accurate.
There are several reasons why my lungs keep getting flooded. It could be low albumin due to chemo, chemo damaged my lymph nodes or cancer cells in the lungs.
The blood test result of 13 Aug showed my albumin level at 34, but Dr Wong said the albumin is not the cause. I didn't mention the chemo damaging the lymph nodes as I thought she would probably shoot that down too.
I had also wanted her permission to remove the central line, as the stitch on one end of the clip had broke off. But she said to leave it first in case I am going for chemo again.
I had also complained of back pain, and that my thighs and heels hurt after getting up from a sitting or lying position. She prescribed some paracetamol with muscle relaxation.
I had 300mg of herceptin by iv.
Before I saw her, I had another x-ray, and this x-ray showed that the fluid in my right lung is back again, though not as much as before the tap nearly 2 weeks ago. By now, I could more or less tell if the fluid is back
I had wanted my left lung tapped, but Dr Wong said to hold on for the time being. She said frequent tapping is not a solution as I may have air sucked in or have an infection.
She suggested that I should go for chemo again, but this time round the drug will not be so strong. I wanted time to consider as I am still having the side-effects of the previous chemo rounds.
When I had the tap on 13 August, they sent some samples for culture and testing. The results came back negative. But Dr Wong said the results might not be very accurate.
There are several reasons why my lungs keep getting flooded. It could be low albumin due to chemo, chemo damaged my lymph nodes or cancer cells in the lungs.
The blood test result of 13 Aug showed my albumin level at 34, but Dr Wong said the albumin is not the cause. I didn't mention the chemo damaging the lymph nodes as I thought she would probably shoot that down too.
I had also wanted her permission to remove the central line, as the stitch on one end of the clip had broke off. But she said to leave it first in case I am going for chemo again.
I had also complained of back pain, and that my thighs and heels hurt after getting up from a sitting or lying position. She prescribed some paracetamol with muscle relaxation.
I had 300mg of herceptin by iv.
Chest Tap - Right Lung Again
4 Aug 08, Monday - I had another 300mg of herceptin.
I had no appointment with Dr Wong and when I complained of breathlessness, the doctor on duty at the chemo unit sent me for an x-ray. She decided that I didn't need a chest tap. I had also wanted to have the central line taken out, but she would rather I checked with Dr Wong first.
13 Aug 08, Wednesday - I had another physiotherapy session for manual lymph drainage. I had been having weekly sessions since July.
My breathing was getting more and more laborious. No appointment with Dr Wong today, so after my physio session, I had to go the NCC walk-in clinic. The doctor sent me for an x-ray and concluded that I needed a chest tap. He also ordered a blood test for me.
At the chemo unit, from the x-ray, they found that my right lung had more fluid. So a chest tap was done on the right lung and they managed to draw 1.2ltrs of fluid. Before the tap, when I walked from NCC to block 4, I had to stopped half way to catch my breath. After this tap, my breathing was easier.
The x-ray taken after the tap showed my right lung nearly cleared of fluid while the left lung was still nearly half covered. I had asked the doctor if it was possible to tap both lungs together and she said no, 'otherwise I have no lungs to breathe'.
18 Aug 08, Monday - I had another heart function (MUGA) test.
19 Aug 08, Tuesday - Another physiotherapy session.
I had been going to SGH and NCC so often that it was like my second home. This is one second home that I would rather do without if I had a choice.
I had no appointment with Dr Wong and when I complained of breathlessness, the doctor on duty at the chemo unit sent me for an x-ray. She decided that I didn't need a chest tap. I had also wanted to have the central line taken out, but she would rather I checked with Dr Wong first.
13 Aug 08, Wednesday - I had another physiotherapy session for manual lymph drainage. I had been having weekly sessions since July.
My breathing was getting more and more laborious. No appointment with Dr Wong today, so after my physio session, I had to go the NCC walk-in clinic. The doctor sent me for an x-ray and concluded that I needed a chest tap. He also ordered a blood test for me.
At the chemo unit, from the x-ray, they found that my right lung had more fluid. So a chest tap was done on the right lung and they managed to draw 1.2ltrs of fluid. Before the tap, when I walked from NCC to block 4, I had to stopped half way to catch my breath. After this tap, my breathing was easier.
The x-ray taken after the tap showed my right lung nearly cleared of fluid while the left lung was still nearly half covered. I had asked the doctor if it was possible to tap both lungs together and she said no, 'otherwise I have no lungs to breathe'.
18 Aug 08, Monday - I had another heart function (MUGA) test.
19 Aug 08, Tuesday - Another physiotherapy session.
I had been going to SGH and NCC so often that it was like my second home. This is one second home that I would rather do without if I had a choice.
Monday, 25 August 2008
Chest Tap - Right Lung
14 Jul 2008, Monday - Saw Dr Wong before my herceptin iv. She referred to the brain, chest and abdomen ct of 7 July and commented that there was a lot of improvement and that the metastases have shrunk.
Shrunk? I was expecting to hear her said that they have disappeared, and asked, " you mean they are still there?" She said, "of course, not so fast". So, after 5 doses of chemo that left me weak and suffering from side-effects, the cancer cells have not been eradicated. I was disappointed.
As my right arm had water retention, Dr Wong arranged for me to see a physio-therapist.
I went to the chemo unit to have my chest tapped. 1 ltr of fluid was tapped from my right lung. After each chest tap, I'd had to have a chest x-ray taken. The right lung was quite clear now, but the left lung still had pleural effusion. It came back again after the June tapping.
After the chest tap, I had 300mg of herceptin by iv.
The blood test in the morning, before I saw Dr Wong, showed my cancer marker had dropped to 16.
Shrunk? I was expecting to hear her said that they have disappeared, and asked, " you mean they are still there?" She said, "of course, not so fast". So, after 5 doses of chemo that left me weak and suffering from side-effects, the cancer cells have not been eradicated. I was disappointed.
As my right arm had water retention, Dr Wong arranged for me to see a physio-therapist.
I went to the chemo unit to have my chest tapped. 1 ltr of fluid was tapped from my right lung. After each chest tap, I'd had to have a chest x-ray taken. The right lung was quite clear now, but the left lung still had pleural effusion. It came back again after the June tapping.
After the chest tap, I had 300mg of herceptin by iv.
The blood test in the morning, before I saw Dr Wong, showed my cancer marker had dropped to 16.
Saturday, 23 August 2008
CT of Brain, Chest & Abdomen
I am aware of the risks from numerous ct scans and x-rays. I had already had several ct scans this year and countless x-rays done that I didn't want to think about the risks anymore. With my condition, if I didn't go for the ct scans and x-rays, then I wouldn't be able to know what was going on in my body.
There are pleural effusions in both my lungs again.
Part of the bases of my lungs have collapsed.
The tongue-twisting, mind-boggling medical lingo of the results of the ct scan of my brain, chest and abdomen has got me again.
Of the liver, I could understand the words 'improved' and 'resolved', so I think the condition of my liver is improving.
Of the spine, from the words 'compatible with treatment related change', I think it should be okay too.
There's no more bleeding in the brains.
There are pleural effusions in both my lungs again.
Part of the bases of my lungs have collapsed.
The tongue-twisting, mind-boggling medical lingo of the results of the ct scan of my brain, chest and abdomen has got me again.
Of the liver, I could understand the words 'improved' and 'resolved', so I think the condition of my liver is improving.
Of the spine, from the words 'compatible with treatment related change', I think it should be okay too.
There's no more bleeding in the brains.
6th & Last Dose?
23 Jun 08, Monday - I had expected to have my 6th and last dose of chemo today, although I must admit I was very reluctant to go through with it.
My body said enough and I wanted a professional who could give me fair advice based on my progress and physical condition. Unfortunately I couldn't find one. So I psyched and braced myself for the last dose.
At least Dr Wong was concerned about my breathing and water retention problems. I had had an ECG done before I saw her and the results were okay. So, she arranged for a heart function test (MUGA) and chest x-ray before I saw her again on 26 June.
The chemo was put on hold.
26 Jun 08, Thursday - The heart function test showed that my heart was okay. But the x-ray revealed that my lungs were flooded again. Dr Wong said no problem with my heart, so she was arranging for a chest tap and then, it was up to me to decide if I wanted to take the last dose. I couldn't believe it! Dr Wong who had always said no to me was giving me the option. Of course, I said I didn't want it. But I had to continue with the herceptin until the subsidy from the Cancer Society expired in September.
I went up to the chemo unit to have my chest tapped. The doctor managed to tap 690 ml of fluid from my left lung before I started coughing. He told me that Dr Wong had actually wanted them to try and tap 1 ltr.
After the chest tap, I had 300 mg of herceptin administered through the central line. As usual, before the herceptin, I was given benedryl that left me drowsy.
My body said enough and I wanted a professional who could give me fair advice based on my progress and physical condition. Unfortunately I couldn't find one. So I psyched and braced myself for the last dose.
At least Dr Wong was concerned about my breathing and water retention problems. I had had an ECG done before I saw her and the results were okay. So, she arranged for a heart function test (MUGA) and chest x-ray before I saw her again on 26 June.
The chemo was put on hold.
26 Jun 08, Thursday - The heart function test showed that my heart was okay. But the x-ray revealed that my lungs were flooded again. Dr Wong said no problem with my heart, so she was arranging for a chest tap and then, it was up to me to decide if I wanted to take the last dose. I couldn't believe it! Dr Wong who had always said no to me was giving me the option. Of course, I said I didn't want it. But I had to continue with the herceptin until the subsidy from the Cancer Society expired in September.
I went up to the chemo unit to have my chest tapped. The doctor managed to tap 690 ml of fluid from my left lung before I started coughing. He told me that Dr Wong had actually wanted them to try and tap 1 ltr.
After the chest tap, I had 300 mg of herceptin administered through the central line. As usual, before the herceptin, I was given benedryl that left me drowsy.
2nd Half of 5th Dose
12 Jun 08, Thursday - 2nd half of 5th dose of chemo - taxotere 40 mg, carboplatin 200 mg. Didn't understand why herceptin was not included.
I was supposed to have the 2nd half of the 5th dose on 5 June, Thursday, but my white blood cell count was low at 2.3. I was told to go back 1 week later on 12 June.
On 12 June, my white blood cell count was still low at 2.3. Staff at chemo unit checked with my onco and was told to go ahead with the chemo.
I was having problems with my breathing, was extremely lethargic and my legs were weak and had water retention. My legs also hurt when I got up from a sitting position. I could sense that my progress had reached the peak after the 3rd dose and now with more doses, it seemed to be going downhill, probably because my immune had been affected and also because of the accumulated side-effects.
I was supposed to have the 2nd half of the 5th dose on 5 June, Thursday, but my white blood cell count was low at 2.3. I was told to go back 1 week later on 12 June.
On 12 June, my white blood cell count was still low at 2.3. Staff at chemo unit checked with my onco and was told to go ahead with the chemo.
I was having problems with my breathing, was extremely lethargic and my legs were weak and had water retention. My legs also hurt when I got up from a sitting position. I could sense that my progress had reached the peak after the 3rd dose and now with more doses, it seemed to be going downhill, probably because my immune had been affected and also because of the accumulated side-effects.
1st Half of 5th Dose
29 May 2008, Thursday - I had the central line (central venous catheter) inserted in my left chest (near the shoulder) under local anaesthetic. It was an ultra-sound guided procedure. It was a simple procedure, but I was told that one of the risks was excessive bleeding.
The silicone tube is inserted through an incision on the skin and into a blood vessel. At the exit point, there is a plastic clip (suture wing) where both ends of the suture wing are stitched to the skin to prevent the catheter from slipping out. Further along the line is a clamp. The clamp is only opened when flushing or administering of drugs, otherwise it is kept closed at all times.
The only discomfort I felt was when the surgeon kept pressing on my shoulder, probably to stem the bleeding. My shoulder felt like it was going to break off. My shoulder was sore for the next couple of days.
I wanted a second opinion on my condition and my response to chemo, but I didn't know which doctor to approach. By the time I called one that Irene had recommended, he was on leave and won't be back until after I was supposed to have my 5th dose.
When I saw Dr Wong on 26 May, Monday, I had told her that I wasn't feeling good after the 4th dose of chemo and that I wanted to stop. She said, no bargaining and that it was the board's decision. In that case, I told her I can't take the full dose and requested to be switched back to the smaller weekly dose. She said ok, but I didn't know then that she had given instructions for the dose to be split into only 2 instead of 3. I only found out when I asked the nurses at the chemo unit and when I couldn't tally up the units of chemo drugs. Regretfully, my trust in my onco had taken a knock.
I also found out later that from the blood test taken on 26 May, that the cancer marker had dropped to 18.8.
1st half of 5th dose - herceptin 300 mg, taxotere 40 mg, carboplatin 250 mg
I didn't need the iv plug anymore and this half dose was administered through the central line. Before using the catheter, nurse had to flush and check the backflow to ensure that it is not blocked.
Nurse showed me how to clean, change dressing and flush the catheter, as I had to change the dressing once a week myself. I bought the dressings, syringes, needles, alcohol swabs, saline vials, etc. When showering, I had to cover the whole area with plastic and tape to prevent it from getting wet.
The silicone tube is inserted through an incision on the skin and into a blood vessel. At the exit point, there is a plastic clip (suture wing) where both ends of the suture wing are stitched to the skin to prevent the catheter from slipping out. Further along the line is a clamp. The clamp is only opened when flushing or administering of drugs, otherwise it is kept closed at all times.
The only discomfort I felt was when the surgeon kept pressing on my shoulder, probably to stem the bleeding. My shoulder felt like it was going to break off. My shoulder was sore for the next couple of days.
I wanted a second opinion on my condition and my response to chemo, but I didn't know which doctor to approach. By the time I called one that Irene had recommended, he was on leave and won't be back until after I was supposed to have my 5th dose.
When I saw Dr Wong on 26 May, Monday, I had told her that I wasn't feeling good after the 4th dose of chemo and that I wanted to stop. She said, no bargaining and that it was the board's decision. In that case, I told her I can't take the full dose and requested to be switched back to the smaller weekly dose. She said ok, but I didn't know then that she had given instructions for the dose to be split into only 2 instead of 3. I only found out when I asked the nurses at the chemo unit and when I couldn't tally up the units of chemo drugs. Regretfully, my trust in my onco had taken a knock.
I also found out later that from the blood test taken on 26 May, that the cancer marker had dropped to 18.8.
1st half of 5th dose - herceptin 300 mg, taxotere 40 mg, carboplatin 250 mg
I didn't need the iv plug anymore and this half dose was administered through the central line. Before using the catheter, nurse had to flush and check the backflow to ensure that it is not blocked.
Nurse showed me how to clean, change dressing and flush the catheter, as I had to change the dressing once a week myself. I bought the dressings, syringes, needles, alcohol swabs, saline vials, etc. When showering, I had to cover the whole area with plastic and tape to prevent it from getting wet.
Wednesday, 20 August 2008
Burnt by Chemo Drugs
Mid May 2008 - A few days after I was discharged, the spot where the nurse had inserted an iv plug for the chemo was very itchy and inflamed. Nearby along the same vein where the ward doctor had dug for blood when I was warded, the spot was turning red and itching too. Then blisters appeared on these two spots.
Initially, I left the blisters alone, but they kept getting bigger and firmer, so I de-blister them. But new ones formed. I applied some antiseptic cream on the spots and kept them covered in case they got scratched. I had passed it off as another chemo side-effect until I saw my onco.
26 May 2008, Mon - I was supposed to have my 5th dose of chemo.
I casually mentioned the blistered areas and showed them to Dr Wong. She was concerned. She said that was a burnt caused by a leak of the chemo drugs. She said I got to be careful and that if the area had been bigger, the whole skin could be peeled off.
She checked my arm and said that there didn't seemed to be any more suitable space left for insertion of the iv plug for chemo, and suggested that I had a central line inserted in my left chest. She made arrangements for the insertion of the central line on 29 May, Thursday, and my 5th dose of chemo was postponed until then.
Then she told me to go up to the chemo unit and show the staff the burnt marks.
I wasn't prepared for the reaction by the staff in the chemo unit. I showed Nurse Kym and she quickly went to get a doctor. Then she came back with a camera and measuring tape. She took pictures and measured the size of the two spots. They asked what had happened, what had I applied and what had I done to the blisters. Which nurse? Said it was a guy, but I couldn't remember the name. Was it the handsome one? Erm.. didn't know which one they were actually referring to, so I suggested they checked their records instead.
They were shocked to find that I had de-blistered them myself. They said I should have called them immediately and also gone to the NCC to have it treated. They deliberated on whether to give me some cream, but then decided against it as the wounds were starting to heal nicely.
Some days later, the skin on the two affected spots started peeling off. I'd been applying essential oil on them and the wounds gradually healed. (At the time of writing this blog, it's been around 3 months and the scars are still visible.)
Oops! So, when I de-blistered them, I must have exposed myself to the chemo drugs. Fortunately, the wound subsequently healed and I didn't get any complications.
The nurses at the chemo unit all wore long-sleeved, waterproofed coats that reached to their knees as a protection. They wore latex gloves when preparing and handling the drips.
Initially, I left the blisters alone, but they kept getting bigger and firmer, so I de-blister them. But new ones formed. I applied some antiseptic cream on the spots and kept them covered in case they got scratched. I had passed it off as another chemo side-effect until I saw my onco.
26 May 2008, Mon - I was supposed to have my 5th dose of chemo.
I casually mentioned the blistered areas and showed them to Dr Wong. She was concerned. She said that was a burnt caused by a leak of the chemo drugs. She said I got to be careful and that if the area had been bigger, the whole skin could be peeled off.
She checked my arm and said that there didn't seemed to be any more suitable space left for insertion of the iv plug for chemo, and suggested that I had a central line inserted in my left chest. She made arrangements for the insertion of the central line on 29 May, Thursday, and my 5th dose of chemo was postponed until then.
Then she told me to go up to the chemo unit and show the staff the burnt marks.
I wasn't prepared for the reaction by the staff in the chemo unit. I showed Nurse Kym and she quickly went to get a doctor. Then she came back with a camera and measuring tape. She took pictures and measured the size of the two spots. They asked what had happened, what had I applied and what had I done to the blisters. Which nurse? Said it was a guy, but I couldn't remember the name. Was it the handsome one? Erm.. didn't know which one they were actually referring to, so I suggested they checked their records instead.
They were shocked to find that I had de-blistered them myself. They said I should have called them immediately and also gone to the NCC to have it treated. They deliberated on whether to give me some cream, but then decided against it as the wounds were starting to heal nicely.
Some days later, the skin on the two affected spots started peeling off. I'd been applying essential oil on them and the wounds gradually healed. (At the time of writing this blog, it's been around 3 months and the scars are still visible.)
Oops! So, when I de-blistered them, I must have exposed myself to the chemo drugs. Fortunately, the wound subsequently healed and I didn't get any complications.
The nurses at the chemo unit all wore long-sleeved, waterproofed coats that reached to their knees as a protection. They wore latex gloves when preparing and handling the drips.
Back at SGH again
9 May 2008, Fri - Midnight, I was given a bed in the general ward.
As a NCC patient, we were told that in case of emergency, we should go to SGH A&E. Once they keyed in my identity card number, they would be able to see that I am a cancer patient. From my records, they could see the medication I was on.
A young female doctor on night duty, came to take my blood sample. She chose a vein that I just had chemo by iv on Monday. She couldn't draw blood and started digging around the spot. Gosh, the way she dug around like hunting for buried treasure and won't give up until I said, maybe you should try another spot as I just had chemo near there on Monday. I told her most of the time, the nurses took blood from a vein near the fold of my elbow. She said there is a tendon there, but she would try. She took another needle and poked and true enough, she hit the tendon. Finally, she moved further down my forearm and managed to collect the samples.
From the medical records, they knew I was on frusemide and the blood tests showed that I was low on potassium. They gave me potassium chloride tablets and later set also set up a potassium iv drip for me.
I had hit my head when I passed out so I had a CT scan of my brain. The scan results showed I had some bleeding on the left front side of the head. It also showed a fracture on the left back portion of my head. I had a feeling this fracture was an old one as some years back, I had passed out, fell backwards and hit my head on the metal base of a standing boxfan.
As I was on chemo, they were concerned that my blood would not clot. I was not given food while the doctors decide if I was to have surgery to stop the bleeding. More blood was taken to determine if my blood was capable of clotting on its own.
The neurologist came and confirmed that the fracture was an old one. As I had fallen backwards, the impact of my head hitting the floor forced my brain to hit the skull in front and caused the bleeding. According to the blood test results, my blood should be able to clot on its own. He asked me to do some simple exercises to check my balance. He said I looked okay and if there were no more complications, I should be discharged the next day. No follow-up was necessary with the neurologist unless the dizziness got worse.
As I was home alone for most part of the day, the doctors were concerned that I might fall again. This time as in previous ones, I had passed out so fast that I didn't even have time to react. One doctor even joked that maybe I should get a protective headgear or have my house padded.
10 May 2008, Sat - I was discharged and since it was a Saturday, I went home to spend the weekend with my family. On Sunday night, I went to stay with my mum for a few days.
My discharge summary said I had recurrent vasovagal syncope.
Vasovagal syncope, the most common cause of fainting, occurs in otherwise healthy people. It can affect people of all ages, but is particularly common in young women. It is also known as Neurocardiogenic Syncope or vasodepressor syncope. As these terms suggest, the cause is low heart rate or blood pressure, leading to inadequate circulation to the brain. This results in fainting, or loss of consciousness (i.e., syncope).
As a NCC patient, we were told that in case of emergency, we should go to SGH A&E. Once they keyed in my identity card number, they would be able to see that I am a cancer patient. From my records, they could see the medication I was on.
A young female doctor on night duty, came to take my blood sample. She chose a vein that I just had chemo by iv on Monday. She couldn't draw blood and started digging around the spot. Gosh, the way she dug around like hunting for buried treasure and won't give up until I said, maybe you should try another spot as I just had chemo near there on Monday. I told her most of the time, the nurses took blood from a vein near the fold of my elbow. She said there is a tendon there, but she would try. She took another needle and poked and true enough, she hit the tendon. Finally, she moved further down my forearm and managed to collect the samples.
From the medical records, they knew I was on frusemide and the blood tests showed that I was low on potassium. They gave me potassium chloride tablets and later set also set up a potassium iv drip for me.
I had hit my head when I passed out so I had a CT scan of my brain. The scan results showed I had some bleeding on the left front side of the head. It also showed a fracture on the left back portion of my head. I had a feeling this fracture was an old one as some years back, I had passed out, fell backwards and hit my head on the metal base of a standing boxfan.
As I was on chemo, they were concerned that my blood would not clot. I was not given food while the doctors decide if I was to have surgery to stop the bleeding. More blood was taken to determine if my blood was capable of clotting on its own.
The neurologist came and confirmed that the fracture was an old one. As I had fallen backwards, the impact of my head hitting the floor forced my brain to hit the skull in front and caused the bleeding. According to the blood test results, my blood should be able to clot on its own. He asked me to do some simple exercises to check my balance. He said I looked okay and if there were no more complications, I should be discharged the next day. No follow-up was necessary with the neurologist unless the dizziness got worse.
As I was home alone for most part of the day, the doctors were concerned that I might fall again. This time as in previous ones, I had passed out so fast that I didn't even have time to react. One doctor even joked that maybe I should get a protective headgear or have my house padded.
10 May 2008, Sat - I was discharged and since it was a Saturday, I went home to spend the weekend with my family. On Sunday night, I went to stay with my mum for a few days.
My discharge summary said I had recurrent vasovagal syncope.
Vasovagal syncope, the most common cause of fainting, occurs in otherwise healthy people. It can affect people of all ages, but is particularly common in young women. It is also known as Neurocardiogenic Syncope or vasodepressor syncope. As these terms suggest, the cause is low heart rate or blood pressure, leading to inadequate circulation to the brain. This results in fainting, or loss of consciousness (i.e., syncope).
- Vasovagal syncope almost always happens when the patient is standing. It is a much less common occurrence when lying down or sitting.
- Usually the first signs are nausea, paleness, sweatiness, rapid heart rate, dizziness, or tightness in the throat. This can last anywhere from a few seconds to a few minutes.
- Fainting usually follows directly. This too may last a few seconds to a few minutes.
- After fainting, patients usually appear flushed, and their heart rate may be slow.
- Rarely, if not allowed to lie down, patients may die, but this is extremely rare.
Black-out
7 May 2008, Wed - By noon, the water retention was back.
8 May 2008, Thu - I took one each of frusemide and potassium chloride. I was very tired, but I was not surprised as this was around the time when I get the side-effects of chemo and I'd just had a full dose on Monday.
After I was back from the market, Nurse Trudi called. She was coming to check on me with Dr Rebecca. I mentioned that I was very tired, but she said they would come anyway. They came before noon.
After Nurse Trudi and the doctor left, I went to sleep. I wasn't very hungry and with the metallic taste, I just didn't feel like eating. Awaking after 3pm, I was still very tired and feeling hungry. Went to the kitchen to look for food.
Taking a bowl, I had just poured some oats in and was about to get the hot water, when my eyes saw light...........
So dizzy... this is the kitchen floor........ why am I here??? what happened???
Took me some minutes to recall that I was preparing oats and that the last thing I remembered was the bright lights. I had passed out even before I hit the ground from a standing position. I must have hit a kitchen stool as I fell because it was way out of place, but I had no recollection of it. I couldn't have been out for very long because I noticed the kitchen clock was still at 3 plus.
I struggled to get up and managed to shift myself to the nearby cabinet. I sat there on the floor and leaning against the cabinet, groggy and dizzy and fighting hard to stay conscious. It was quite some time before I felt a little steady and slowly got up to add hot water to the oats. I sat back on the kitchen floor and ate the oats. That wasn't a wise thing to do as I started throwing up.
I kept wanting to pass out so I just sat there and rested. After a while, I made my way to the living room and sat near the phone. Glo happened to call and I mentioned that I just had a fall, didn't feel like talking and wanted to rest.
I called Nurse Trudi and told her what had happened. She consulted with the doctor who advised me to get to A&E. I told her I should be okay and just needed to rest. I rested for about half an hour and decided that things just weren't going to get better. I called my mum and asked her to send her maid, Marilou, over.
Made my way to the door, unlock the gate and went to the recliner to rest. I had told Marilou that I would leave the gate unlocked so that she could go in without having to bother me.
Marilou came and jammed the bolt on the gate instead. I heard her fiddling with the gate for quite some time and got up slowly to open the gate for her. Told her to boil some fresh milk for me and went back to the recliner.
I was vaguely aware that Marilou was trying to wake me up and massaging me at the same time. I found out later that I had suffered a seizure and had bitten my tongue. Marilou said she was frightened, my eyes rolled up, I was shaking and didn't seem to be breathing. She said she kept calling and massaging me at the same time until I regained consciousness.
I drank the milk and asked Marilou to cook porridge for me. It was nearly 6pm and by then, my elder daughter had come home from school, so I asked Marilou to go back to mum's.
I seemed to feel a little steadier after the milk but didn't feel like eating the porridge. I wanted a quick shower, and told my daughter that I would leave the bathroom door unlock and asked her to standby outside the door in case I fell. I managed to finish showering without problem.
In the meantime, my younger daughter and husband had returned.
I was on the recliner when I started feeling queasy again. I threw up so hard that I nearly passed out again. My son, who happened to be on leave the next day, came back and saw the sorry sight I was in. He was very concerned and insisted that I should go to hospital. I asked him to call 1777 for a private ambulance so that I could be sent to SGH A&E instead of Changi. With the help of my daughter, I grabbed some of my stuff and waited for the ambulance.
The ambulance was a small one, like a small panel van, with basic essentials. As I lie there on the stretcher, I could sense the ambulance speeding, just didn't know how fast. I opened my eyes and could see the treetops flying past. I quickly closed my eyes again and prayed that we reach the hospital safe and sound. My son, who had accompanied me and was sitting in front, said that the driver was speeding but seemed quite skilful.
Lying there and praying, I had recalled that years ago, when I was holidaying in the Philippines, I had noticed that a lot of the cab drivers there had this little prayer hanging in their vehicles :
O Lord,
Give me a steady hand and a watchful eye
So that no one will be hurt as I pass by.
I hoped my ambulance driver was praying too.
Going to the A&E by ambulance was a wise choice because the ambulance attendant had contacted the hospital and by the time, we arrived, they were waiting for me. I was admitted straightaway, avoiding the hassle of registering and queuing for admission.
8 May 2008, Thu - I took one each of frusemide and potassium chloride. I was very tired, but I was not surprised as this was around the time when I get the side-effects of chemo and I'd just had a full dose on Monday.
After I was back from the market, Nurse Trudi called. She was coming to check on me with Dr Rebecca. I mentioned that I was very tired, but she said they would come anyway. They came before noon.
After Nurse Trudi and the doctor left, I went to sleep. I wasn't very hungry and with the metallic taste, I just didn't feel like eating. Awaking after 3pm, I was still very tired and feeling hungry. Went to the kitchen to look for food.
Taking a bowl, I had just poured some oats in and was about to get the hot water, when my eyes saw light...........
So dizzy... this is the kitchen floor........ why am I here??? what happened???
Took me some minutes to recall that I was preparing oats and that the last thing I remembered was the bright lights. I had passed out even before I hit the ground from a standing position. I must have hit a kitchen stool as I fell because it was way out of place, but I had no recollection of it. I couldn't have been out for very long because I noticed the kitchen clock was still at 3 plus.
I struggled to get up and managed to shift myself to the nearby cabinet. I sat there on the floor and leaning against the cabinet, groggy and dizzy and fighting hard to stay conscious. It was quite some time before I felt a little steady and slowly got up to add hot water to the oats. I sat back on the kitchen floor and ate the oats. That wasn't a wise thing to do as I started throwing up.
I kept wanting to pass out so I just sat there and rested. After a while, I made my way to the living room and sat near the phone. Glo happened to call and I mentioned that I just had a fall, didn't feel like talking and wanted to rest.
I called Nurse Trudi and told her what had happened. She consulted with the doctor who advised me to get to A&E. I told her I should be okay and just needed to rest. I rested for about half an hour and decided that things just weren't going to get better. I called my mum and asked her to send her maid, Marilou, over.
Made my way to the door, unlock the gate and went to the recliner to rest. I had told Marilou that I would leave the gate unlocked so that she could go in without having to bother me.
Marilou came and jammed the bolt on the gate instead. I heard her fiddling with the gate for quite some time and got up slowly to open the gate for her. Told her to boil some fresh milk for me and went back to the recliner.
I was vaguely aware that Marilou was trying to wake me up and massaging me at the same time. I found out later that I had suffered a seizure and had bitten my tongue. Marilou said she was frightened, my eyes rolled up, I was shaking and didn't seem to be breathing. She said she kept calling and massaging me at the same time until I regained consciousness.
I drank the milk and asked Marilou to cook porridge for me. It was nearly 6pm and by then, my elder daughter had come home from school, so I asked Marilou to go back to mum's.
I seemed to feel a little steadier after the milk but didn't feel like eating the porridge. I wanted a quick shower, and told my daughter that I would leave the bathroom door unlock and asked her to standby outside the door in case I fell. I managed to finish showering without problem.
In the meantime, my younger daughter and husband had returned.
I was on the recliner when I started feeling queasy again. I threw up so hard that I nearly passed out again. My son, who happened to be on leave the next day, came back and saw the sorry sight I was in. He was very concerned and insisted that I should go to hospital. I asked him to call 1777 for a private ambulance so that I could be sent to SGH A&E instead of Changi. With the help of my daughter, I grabbed some of my stuff and waited for the ambulance.
The ambulance was a small one, like a small panel van, with basic essentials. As I lie there on the stretcher, I could sense the ambulance speeding, just didn't know how fast. I opened my eyes and could see the treetops flying past. I quickly closed my eyes again and prayed that we reach the hospital safe and sound. My son, who had accompanied me and was sitting in front, said that the driver was speeding but seemed quite skilful.
Lying there and praying, I had recalled that years ago, when I was holidaying in the Philippines, I had noticed that a lot of the cab drivers there had this little prayer hanging in their vehicles :
O Lord,
Give me a steady hand and a watchful eye
So that no one will be hurt as I pass by.
I hoped my ambulance driver was praying too.
Going to the A&E by ambulance was a wise choice because the ambulance attendant had contacted the hospital and by the time, we arrived, they were waiting for me. I was admitted straightaway, avoiding the hassle of registering and queuing for admission.
Tuesday, 19 August 2008
4th Dose of Chemo
5 May 2008, Mon - 4th dose of chemo (herceptin 280 mg, docetaxel 90mg, carboplatin 650mg)
When I was feeling the effects of the 3rd full dose, I was ready to tell Dr Wong that I wanted to switch back to smaller weekly doses. But when the effects wore off after 7 days and I had more than a week's break, I thought, okay, maybe it wasn't so bad. Perhaps go for the full dose and get it over with so that I didn't have to go to SGH every week for blood test. On top of that, my left arm was running out of place for them to insert the iv plug.
After the 3rd dose, I noticed that my right arm was getting bloated from water retention, and I was getting a little breathless too.
Dr Wong prescribed frusemide to get rid of the water and also potassium chloride so that I won't get too low on potassium. I was to take one frusemide and one potassium chloride in the morning when necessary.
6 May2008, Tue - I took a frusemide and one potassium as prescribed. The frusemide was very effective. I was passing a lot of urine. For the past few weeks, I hadn't been passing much urine. I would get the urge but would only manage to pass a little. After the frusemide, I really felt the satisfaction of a full royal flush whenever I went to the toilet. I felt relief.
I didn't take frusemide on Wednesday as I thought the water retention would not be so bad after that.
When I was feeling the effects of the 3rd full dose, I was ready to tell Dr Wong that I wanted to switch back to smaller weekly doses. But when the effects wore off after 7 days and I had more than a week's break, I thought, okay, maybe it wasn't so bad. Perhaps go for the full dose and get it over with so that I didn't have to go to SGH every week for blood test. On top of that, my left arm was running out of place for them to insert the iv plug.
After the 3rd dose, I noticed that my right arm was getting bloated from water retention, and I was getting a little breathless too.
Dr Wong prescribed frusemide to get rid of the water and also potassium chloride so that I won't get too low on potassium. I was to take one frusemide and one potassium chloride in the morning when necessary.
6 May2008, Tue - I took a frusemide and one potassium as prescribed. The frusemide was very effective. I was passing a lot of urine. For the past few weeks, I hadn't been passing much urine. I would get the urge but would only manage to pass a little. After the frusemide, I really felt the satisfaction of a full royal flush whenever I went to the toilet. I felt relief.
I didn't take frusemide on Wednesday as I thought the water retention would not be so bad after that.
3rd Dose of Chemo
14 Apr 2008, Mon - 3rd dose of chemo (herceptin 280mg, docetaxel 90mg, carboplatin 700mg)
This time round, I took the full dose in one go as my onco felt that I could handle it and that it would be more effective.
Most people I spoke to usually felt the side-effects immediately, but I always seemed to have a delayed effect. I only started feeling the side-effects on Thursday, 3 days after I had the drip.
I was expecting to feel the effects because of the full dose, but was surprised to find that I was still fine on Tuesday and Wednesday. I had stayed with my mum for 2 to 3 weeks after my discharge from SGH and was now back in my own home. I could still go marketing, which is less than 10 minutes walk away from my home. I had been thinking it wasn't so bad after all.
I spoke too soon. Come Thursday, and I was so tired, so lethargic, and my mouth had a very strong metallic taste. The carboplatin contains platinum. Anything that I put into my mouth tasted like metal. Even when I drank water, it felt like I was drinking some metallic stuff or drinking out of a rusty container. It felt terrible when I burped. I was hungry, but I didn't feel like eating anything. It wasn't that I had no appetite. It's just that I hated the taste of food. The only thing I found that I could swallow without such a bad taste was ice cream. So I had quite a lot of it.
I was so lethargic that I was sleeping most of the time. Food wise, other than ice cream, I tried to force myself to eat whatever I could swallow. Most times, I only managed a few mouthfuls of what I had prepared.
The effects lasted about 7 days. I was really not in the best of moods. It was manageable when I was on the smaller weekly dose. The metallic taste was there but it was bearable. But now that I have felt the full force of a full dose of chemo, I really hated it. The lethargy, the metallic, in addition to the aches and pains, the rashes and itchiness, for that moment, life had suddenly felt miserable.
Fortunately, this time round, my mouth didn't break out in sores. I had it once when I had the third portion of my 1st dose. It was awful. My gums hurt. I had ulcers on the gums, tongue and mouth lining. I could only swallow and couldn't chew. Even eating porridge was a problem. I had to take soupy stuff most of the time.
This time round, I took the full dose in one go as my onco felt that I could handle it and that it would be more effective.
Most people I spoke to usually felt the side-effects immediately, but I always seemed to have a delayed effect. I only started feeling the side-effects on Thursday, 3 days after I had the drip.
I was expecting to feel the effects because of the full dose, but was surprised to find that I was still fine on Tuesday and Wednesday. I had stayed with my mum for 2 to 3 weeks after my discharge from SGH and was now back in my own home. I could still go marketing, which is less than 10 minutes walk away from my home. I had been thinking it wasn't so bad after all.
I spoke too soon. Come Thursday, and I was so tired, so lethargic, and my mouth had a very strong metallic taste. The carboplatin contains platinum. Anything that I put into my mouth tasted like metal. Even when I drank water, it felt like I was drinking some metallic stuff or drinking out of a rusty container. It felt terrible when I burped. I was hungry, but I didn't feel like eating anything. It wasn't that I had no appetite. It's just that I hated the taste of food. The only thing I found that I could swallow without such a bad taste was ice cream. So I had quite a lot of it.
I was so lethargic that I was sleeping most of the time. Food wise, other than ice cream, I tried to force myself to eat whatever I could swallow. Most times, I only managed a few mouthfuls of what I had prepared.
The effects lasted about 7 days. I was really not in the best of moods. It was manageable when I was on the smaller weekly dose. The metallic taste was there but it was bearable. But now that I have felt the full force of a full dose of chemo, I really hated it. The lethargy, the metallic, in addition to the aches and pains, the rashes and itchiness, for that moment, life had suddenly felt miserable.
Fortunately, this time round, my mouth didn't break out in sores. I had it once when I had the third portion of my 1st dose. It was awful. My gums hurt. I had ulcers on the gums, tongue and mouth lining. I could only swallow and couldn't chew. Even eating porridge was a problem. I had to take soupy stuff most of the time.
Monday, 18 August 2008
2nd Dose Chemo & Cancer Marker Dropped
17 Mar 2008 - 1st part of 2nd dose (90mg herceptin, 40mg taxotere, 250mg carboplatin)
24 Mar 2008 - 2nd part (90mg herceptin, 40mg taxotere, 250mg carboplatin)
1 Apr 2008 - last part (90mg herceptin, 40mg taxotere, 250mg carboplatin)
7 Apr 2008 - 90mg herceptin
31 Mar 2008 - Cancer marker 48.1 , down from 309 on 15 Feb 2008. It was exactly one and a half months ago, and my cancer marker had nose-dived. It is only in instances like this where a graph showed such a sharp drop and everybody is happy. This was before I had completed my second dose of chemo. I was responding well to the chemo.
I was normally given herceptin first, then taxotere and lastly carboplatin. During one of the chemo sessions, less than 5 minutes into taxotere, I started scratching all over. I was still drowsy from the benedryl and initially I tried to control the itch. But it became worse and I casually asked the nurse tending my machine, why was I feeling itchy all over.
She immediately stopped the drip and went to get a senior nurse. They checked my rashes and reported to the doctor on duty. The doctor prescribed more benedryl. I was told this was a delayed reaction to taxotere, and that a lot of people are having more and more reactions to taxotere, some seriously.
Normally, my chemo sessions would last 3-4 hours. But this particular session lasted 5-6 hours as I had to wait for the doctor and also wait for the benedryl to take effect before they can start the drip again.
With so much fluid in my system, I normally had to make 2 or 3 trips to the toilet. Fortunately, the monitoring machine is mounted on a stand with casters and I just pushed it along, drip and all.
24 Mar 2008 - 2nd part (90mg herceptin, 40mg taxotere, 250mg carboplatin)
1 Apr 2008 - last part (90mg herceptin, 40mg taxotere, 250mg carboplatin)
7 Apr 2008 - 90mg herceptin
31 Mar 2008 - Cancer marker 48.1 , down from 309 on 15 Feb 2008. It was exactly one and a half months ago, and my cancer marker had nose-dived. It is only in instances like this where a graph showed such a sharp drop and everybody is happy. This was before I had completed my second dose of chemo. I was responding well to the chemo.
I was normally given herceptin first, then taxotere and lastly carboplatin. During one of the chemo sessions, less than 5 minutes into taxotere, I started scratching all over. I was still drowsy from the benedryl and initially I tried to control the itch. But it became worse and I casually asked the nurse tending my machine, why was I feeling itchy all over.
She immediately stopped the drip and went to get a senior nurse. They checked my rashes and reported to the doctor on duty. The doctor prescribed more benedryl. I was told this was a delayed reaction to taxotere, and that a lot of people are having more and more reactions to taxotere, some seriously.
Normally, my chemo sessions would last 3-4 hours. But this particular session lasted 5-6 hours as I had to wait for the doctor and also wait for the benedryl to take effect before they can start the drip again.
With so much fluid in my system, I normally had to make 2 or 3 trips to the toilet. Fortunately, the monitoring machine is mounted on a stand with casters and I just pushed it along, drip and all.
1st Dose Completed & Good Response
27 Feb 2008 - I had problems sleeping the night before. My back was aching and I couldn't turn freely, and had to grab the edge of the mattress in order to do so. When I got up, I was unsteady on my feet.
Sitting down on the sofa or chair was easier than getting up as I had to press against the armrests or grab on to something to pull myself up. I had become more like a half-invalid.
By then, the muscles from the nape down to the hips were painful to the touch, and strangely, I didn't feel the pain if I didn't touch it.
The good news was that the remaining lumps had all disappeared. Some of the dried scabs on my right chest where the lumps had been has also started dropping off.
3 Mar 2008 - Last portion of the first dose of chemo (40mg Docetaxel and 200mg Carboplatin)
When I went for the last portion of the 1st dose, the onco was so happy with my response to the chemo. Frankly, I was surprised too. I hadn't expected it to be so fast and that was only two-thirds of the first dose.
After the completion of the 1st dose of chemo, my hair started shedding. It was a nuisance. They fall all over my body and the floor when I shower. The towel was full of it. When I had my meals, they dropped on my food. My pillow and the mattress were full of it too. I had my sister shaved them off for me. Cool! I didn't look that bad with my head bald and my elder daughter commented that I looked like a nun.
10 Mar 2008 - 80mg Herceptin only
I had a week's break from chemo and only had herceptin. This was arranged my by onco and I didn't know why.
Sitting down on the sofa or chair was easier than getting up as I had to press against the armrests or grab on to something to pull myself up. I had become more like a half-invalid.
By then, the muscles from the nape down to the hips were painful to the touch, and strangely, I didn't feel the pain if I didn't touch it.
The good news was that the remaining lumps had all disappeared. Some of the dried scabs on my right chest where the lumps had been has also started dropping off.
3 Mar 2008 - Last portion of the first dose of chemo (40mg Docetaxel and 200mg Carboplatin)
When I went for the last portion of the 1st dose, the onco was so happy with my response to the chemo. Frankly, I was surprised too. I hadn't expected it to be so fast and that was only two-thirds of the first dose.
After the completion of the 1st dose of chemo, my hair started shedding. It was a nuisance. They fall all over my body and the floor when I shower. The towel was full of it. When I had my meals, they dropped on my food. My pillow and the mattress were full of it too. I had my sister shaved them off for me. Cool! I didn't look that bad with my head bald and my elder daughter commented that I looked like a nun.
10 Mar 2008 - 80mg Herceptin only
I had a week's break from chemo and only had herceptin. This was arranged my by onco and I didn't know why.
ARTICLE - CANCER PREVENTION
I am not sure of the origin nor authenticity of this article which was forwarded to me by a friend. It's an extract of an article written by a Dr Lu Geling, who was once in charge of Maijie Hospital in Taiwan. I googled 'Maijie Hospital' but only found 2 sites carrying the same article, and nothing about Maijie Hospital.
Nevertheless, I am reproducing part of the article here as I have heard of the connection between an acidic body and cancer and the importance of balancing it with an intake of stuff that are alkaline by nature. However, it is advisable to be discretionary and not go to extremes.
Quote :
Under weakly alkaline condition, cancerous cells will not be able to grow, or even to survive.
One should take care of oneself and should also be caring about others, 85% of cancer patients are acidic in their physical condition. Blood of healthy persons is weakly alkaline in nature, with a pH of about 7.35 to 7.45 .
Babies' blood is also weakly acidic. As adults mature their blood becomes more acidic in nature.
According to a study of 600 cancer patients of their body fluid, 85% of the patients are acidic.
Therefore, how to maintain the weakly acidic of our body is the first step for moving far away from diseases.
Acidic physical conditions manifest itself in:
1. Skin without lustre
2. Athlete's foot
3. Feeling tired even with very little exercise, and feeling sleepy the moment one gets on to public buses
4. Easily out of breath going up and down the stairs
5. Fat and with lower stomach protruding
6. Move slowly and movement lethargic
Why does the body physical condition turned acidic?
1. Excessive intake of dairy acidic food
a) meat, dairy products, eggs, beef, ham, etc are acidic food
b) taking too much acidic food will cause the blood to become acidic and viscous, difficult to flow to the end of blood vessels, leading to cold feet or knee, stiff shoulders and insomnia.
c) When one is young and strong, taking suitable quantity of meat is appropriate, but with older people it is more suitable to have a diet which are primarily vegetables or small fish.
2. Irregularity in the pace of life will cause the body physical condition to become acidic
a) Irregular pace in life will lead to mental and physical stress
b) According to statistics, people who sleep late are more likely to have cancer than normal persons, by as much as 5 times.
c) Human beings originally lead a life with regular tempo in this world, it is not possible to store up sleep or food and not possible to change the order of living by mixing up days and nights.
d) Human organs are controlled by the autonomic nerves, and during day time it is mainly sympathetic nerves activities, and at night it is mainly the parasympathetic nerves which are functioning, If this order is disturbed and reversed, then diseases will result.
3. Emotion over tensed
a) Civilised society brings stresses
b) Job related or mental stressed
c) A person suffers mental stress, when the stress is removed and the person relaxes, sometimes this may lead to death, referred to as the syndrome of imperfect adrenal cortex function.
4. Physical Stress
a) Before any operation it would be necessary to check to see if the renal cortex does function normally. If the adrenal cortex is lacking, or if the stress imposed by the operation exceeded the ability of adrenal cortex to cope, it could lead to death or other undesirable impacts.
b) If it is noted that patient's face is puffy, it would be necessary to inquire in detail the patient's medical history and medication status, for patients taking adrenal cortical hormone, extra care should be exercised when administering acupuncture.
c) Stress due to physical labour or exercise in excess, whole night card games, driving etc should be avoided as much as possible.
Appendix:
Acidity/alkalinity of Common food stuff
Strongly acidic food:
egg yolk, cheese, cake made with white sugar or persimmon, mullet fish roe, dried cod.
2. Mildly acidic food:
ham, bacon, chicken meat, squid, pork, eel, beef, bread, wheat, butter, horse meat etc
3. Weakly acidic food:
white rice, peanut, beer, alcohol, oil fried tofu, seaweed, clam, octopus, catfish
4. Weakly alkaline food:
red bean, radish, apple, cabbage, onion, tofu, etc.
5. Mildly alkaline food:
dried radish, soya bean, carrot, tomato, banana, orange, pumpkin, strawberry, egg white, dried plum, lemon, spinach, etc
6. Strongly alkaline food:
grape, tea leaves, grape wine, kelp sprout, kelp, etc.
Especially natural green algae which contain rich quantity of chlorophyll are very good alkaline health food, but tea should not be drunk in excess and best to drink in the morning.
Unquote
The two sites are :
http://taygy.multiply.com/journal/item/67
http://bonushoe.multiply.com/journal/item/62
Nevertheless, I am reproducing part of the article here as I have heard of the connection between an acidic body and cancer and the importance of balancing it with an intake of stuff that are alkaline by nature. However, it is advisable to be discretionary and not go to extremes.
Quote :
Under weakly alkaline condition, cancerous cells will not be able to grow, or even to survive.
One should take care of oneself and should also be caring about others, 85% of cancer patients are acidic in their physical condition. Blood of healthy persons is weakly alkaline in nature, with a pH of about 7.35 to 7.45 .
Babies' blood is also weakly acidic. As adults mature their blood becomes more acidic in nature.
According to a study of 600 cancer patients of their body fluid, 85% of the patients are acidic.
Therefore, how to maintain the weakly acidic of our body is the first step for moving far away from diseases.
Acidic physical conditions manifest itself in:
1. Skin without lustre
2. Athlete's foot
3. Feeling tired even with very little exercise, and feeling sleepy the moment one gets on to public buses
4. Easily out of breath going up and down the stairs
5. Fat and with lower stomach protruding
6. Move slowly and movement lethargic
Why does the body physical condition turned acidic?
1. Excessive intake of dairy acidic food
a) meat, dairy products, eggs, beef, ham, etc are acidic food
b) taking too much acidic food will cause the blood to become acidic and viscous, difficult to flow to the end of blood vessels, leading to cold feet or knee, stiff shoulders and insomnia.
c) When one is young and strong, taking suitable quantity of meat is appropriate, but with older people it is more suitable to have a diet which are primarily vegetables or small fish.
2. Irregularity in the pace of life will cause the body physical condition to become acidic
a) Irregular pace in life will lead to mental and physical stress
b) According to statistics, people who sleep late are more likely to have cancer than normal persons, by as much as 5 times.
c) Human beings originally lead a life with regular tempo in this world, it is not possible to store up sleep or food and not possible to change the order of living by mixing up days and nights.
d) Human organs are controlled by the autonomic nerves, and during day time it is mainly sympathetic nerves activities, and at night it is mainly the parasympathetic nerves which are functioning, If this order is disturbed and reversed, then diseases will result.
3. Emotion over tensed
a) Civilised society brings stresses
b) Job related or mental stressed
c) A person suffers mental stress, when the stress is removed and the person relaxes, sometimes this may lead to death, referred to as the syndrome of imperfect adrenal cortex function.
4. Physical Stress
a) Before any operation it would be necessary to check to see if the renal cortex does function normally. If the adrenal cortex is lacking, or if the stress imposed by the operation exceeded the ability of adrenal cortex to cope, it could lead to death or other undesirable impacts.
b) If it is noted that patient's face is puffy, it would be necessary to inquire in detail the patient's medical history and medication status, for patients taking adrenal cortical hormone, extra care should be exercised when administering acupuncture.
c) Stress due to physical labour or exercise in excess, whole night card games, driving etc should be avoided as much as possible.
Appendix:
Acidity/alkalinity of Common food stuff
Strongly acidic food:
egg yolk, cheese, cake made with white sugar or persimmon, mullet fish roe, dried cod.
2. Mildly acidic food:
ham, bacon, chicken meat, squid, pork, eel, beef, bread, wheat, butter, horse meat etc
3. Weakly acidic food:
white rice, peanut, beer, alcohol, oil fried tofu, seaweed, clam, octopus, catfish
4. Weakly alkaline food:
red bean, radish, apple, cabbage, onion, tofu, etc.
5. Mildly alkaline food:
dried radish, soya bean, carrot, tomato, banana, orange, pumpkin, strawberry, egg white, dried plum, lemon, spinach, etc
6. Strongly alkaline food:
grape, tea leaves, grape wine, kelp sprout, kelp, etc.
Especially natural green algae which contain rich quantity of chlorophyll are very good alkaline health food, but tea should not be drunk in excess and best to drink in the morning.
Unquote
The two sites are :
http://taygy.multiply.com/journal/item/67
http://bonushoe.multiply.com/journal/item/62
Saturday, 16 August 2008
Odds & Ends
It's because I waited so long and after so much has happened before updating this blog that I kept missing out on stuffs. Probably, also the chemo mucked up my memory, yea, blame the chemo after it saved me from the jaws of death.
It was only after I had so much trouble breathing and had been dependent on oxygen that I realised that this is one of those things in life that I had taken for granted. I hadn't given much thought to the quality of air we breathe in though I really hated to be breathing in cigarette smoke and exhaust fumes.
My apartment is on the second level and very often we smelled cigarette smoke though none of my family members smoked. Sometimes it's from people smoking in the void deck below and sometimes I didn't know where they come from. When that happened, I would be so tempted to pour water down and drench that inconsiderate fellow below. After all, you were smoking me out of my home and poisoning me and my loved ones in your attempt, that should give me the right to drench you with water - just be thankful that it was not going to be some other liquid from the toilet. If I could have my way, that would be the evil in me responding.
Then, there would be the drivers who parked their vehicles with the engine running while they sit inside and enjoy the cool comfort of the aircon. Unfortunately, the sheltered boarding and alighting bay is located very close to my block and the exhaust would be in the direction of my kitchen and bedroom windows. Sometimes, I walked into the kitchen only to be hit in the nose by exhaust fumes. More than once, I went down and told the drivers to switch off their engines. More often than not, they complied after being confronted by a woman with a hat on her head, a sign of someone who has been through chemo. Perhaps I should consider facing them with my bald head and make them feel more guilty.
I digressed.
While on oxygen, every time I had to leave my bed for tests and x-rays, they had to fetch me in a wheelchair and hooked me up to a portable oxygen canister. Once, the tube came loose while I was waiting for my turn for some test. I couldn't breathe and I knew I had lost my oxygen supply. A staff reconnected it for me. The worst was when I had to be x-rayed. I had to hold my breath and I would feel like collapsing. Usually, I would remind them that I couldn't hold my breath for long.
When my breathing had improved somewhat, the onco staff allowed me more mobility. I wanted to shower and they got a portable oxygen canister on a trolley for me. I went to shower with the oxygen and all.
After I was independent of the oxygen and could go to the toilet to answer nature's call, nurse would be asking how many times I went and if it was a lot. Erm... do I have to take note and tell you? Yes, she explained, because of my condition (flooded lungs), all my output had to be recorded - doc's orders. They had no problem when I had to ask for the bedpan or commode. But when I became independent, they had to depend on me to keep track. So sorry, I wasn't aware of that.
The ward doctor had limited my water intake to 1 litre a day when my lungs were flooded. Nurse was also asking how much water was I drinking?
I hadn't mentioned this before, but when I was initially warded and had great difficulty talking, my friends, relatives and family members were kept up-to-date on my condition and progress through one person, my eldest brother. He had visited me practically everyday and also talked to my doctors, and so he could update a few and the information was passed on to the rest without me wearing myself out talking to everyone individually. What a way for my brother to spend his holiday here. I am also very grateful to all for their concern, prayers, support and everything.
It was only after I had so much trouble breathing and had been dependent on oxygen that I realised that this is one of those things in life that I had taken for granted. I hadn't given much thought to the quality of air we breathe in though I really hated to be breathing in cigarette smoke and exhaust fumes.
My apartment is on the second level and very often we smelled cigarette smoke though none of my family members smoked. Sometimes it's from people smoking in the void deck below and sometimes I didn't know where they come from. When that happened, I would be so tempted to pour water down and drench that inconsiderate fellow below. After all, you were smoking me out of my home and poisoning me and my loved ones in your attempt, that should give me the right to drench you with water - just be thankful that it was not going to be some other liquid from the toilet. If I could have my way, that would be the evil in me responding.
Then, there would be the drivers who parked their vehicles with the engine running while they sit inside and enjoy the cool comfort of the aircon. Unfortunately, the sheltered boarding and alighting bay is located very close to my block and the exhaust would be in the direction of my kitchen and bedroom windows. Sometimes, I walked into the kitchen only to be hit in the nose by exhaust fumes. More than once, I went down and told the drivers to switch off their engines. More often than not, they complied after being confronted by a woman with a hat on her head, a sign of someone who has been through chemo. Perhaps I should consider facing them with my bald head and make them feel more guilty.
I digressed.
While on oxygen, every time I had to leave my bed for tests and x-rays, they had to fetch me in a wheelchair and hooked me up to a portable oxygen canister. Once, the tube came loose while I was waiting for my turn for some test. I couldn't breathe and I knew I had lost my oxygen supply. A staff reconnected it for me. The worst was when I had to be x-rayed. I had to hold my breath and I would feel like collapsing. Usually, I would remind them that I couldn't hold my breath for long.
When my breathing had improved somewhat, the onco staff allowed me more mobility. I wanted to shower and they got a portable oxygen canister on a trolley for me. I went to shower with the oxygen and all.
After I was independent of the oxygen and could go to the toilet to answer nature's call, nurse would be asking how many times I went and if it was a lot. Erm... do I have to take note and tell you? Yes, she explained, because of my condition (flooded lungs), all my output had to be recorded - doc's orders. They had no problem when I had to ask for the bedpan or commode. But when I became independent, they had to depend on me to keep track. So sorry, I wasn't aware of that.
The ward doctor had limited my water intake to 1 litre a day when my lungs were flooded. Nurse was also asking how much water was I drinking?
I hadn't mentioned this before, but when I was initially warded and had great difficulty talking, my friends, relatives and family members were kept up-to-date on my condition and progress through one person, my eldest brother. He had visited me practically everyday and also talked to my doctors, and so he could update a few and the information was passed on to the rest without me wearing myself out talking to everyone individually. What a way for my brother to spend his holiday here. I am also very grateful to all for their concern, prayers, support and everything.
Hospice Care
When I was warded at SGH initially, Dr Wong mentioned that she would be arranging for doctors and nurses to check on me at home, and that I wouldn't have to pay for their services. She didn't elaborate further.
At that time, I was having problems breathing, coughing, couldn't sleep well, couldn't talk, exhausted, and I didn't pay much attention to what Dr Wong was saying. Also, at that time, I wasn't aware yet that I was at stage 4 and terminal and had only 3 - 5 months left if I didn't go on chemo.
After I was discharged, Nurse Trudi and her colleagues from HCA Hospice Care visited me at my mum's place. I wasn't exactly looking forward to the meeting because of the condition I was in then. My legs were like jelly, my back felt like breaking into two, I wasn't eating and sleeping well, was totally exhausted. I'd no idea what hospice care was about. I had asked around and nobody knew either. I had heard of hospice care for the aged sick, but deliver the care to the patient's home..., what is that? I'd thought it was some aftercare service though I didn't know why I should be receiving it.
I had a lot of questions for Nurse Trudi. She explained what their services were about. I could call them for medication and in an emergency, I could call them first instead of rushing all the way to the hospital. They had branches located in different parts of Singapore for convenience. They had been around for more than 10 years. Yet, I wasn't aware of its existence. Not so strange, when I come to think of it.
After all, when are we ever aware of stuff that we don't need and when everything is going fine for us. Only when in need, do we start looking around and realised that there were indeed a lot of stuff that we had missed out on before.
They were subsidised by the government and also funded by charity. Hey, that's one up for the government.
Elaine, a medical social aid with HCA, explained how I could get financial aid. She said I could apply for a withdrawal on my Dependant's Protection Scheme (DPS) and also activate my Home Protection Scheme (HPS - my husband and I had 100% insurance coverage). And, if necessry, I could even make a full withdrawal of my CPF to cover my medical expenses. I could? Yes, she said, because you are stage 4 and terminal.
Okay, that was the first time I learnt that I was under that category, maybe, because I wasn't mentally alert so the impact hadn't sunk in. Or, maybe because of the struggle for the past few months, I was prepared for anything, and nothing fazes me anymore. All I know was that, at that time, dying wasn't an option for me, no, not yet. Although, I realised later that some around me were worried that they were going to lose me.
Maybe, my onco had also half expected me not to pull through, that's why she called in the hospice care. Well, this half-century old lady still got a lot of fight left in her and is not ready to throw in the towel yet.
Now I know what hospice care is about and I am very thankful to Dr Wong for calling them in for me.
At that time, I was having problems breathing, coughing, couldn't sleep well, couldn't talk, exhausted, and I didn't pay much attention to what Dr Wong was saying. Also, at that time, I wasn't aware yet that I was at stage 4 and terminal and had only 3 - 5 months left if I didn't go on chemo.
After I was discharged, Nurse Trudi and her colleagues from HCA Hospice Care visited me at my mum's place. I wasn't exactly looking forward to the meeting because of the condition I was in then. My legs were like jelly, my back felt like breaking into two, I wasn't eating and sleeping well, was totally exhausted. I'd no idea what hospice care was about. I had asked around and nobody knew either. I had heard of hospice care for the aged sick, but deliver the care to the patient's home..., what is that? I'd thought it was some aftercare service though I didn't know why I should be receiving it.
I had a lot of questions for Nurse Trudi. She explained what their services were about. I could call them for medication and in an emergency, I could call them first instead of rushing all the way to the hospital. They had branches located in different parts of Singapore for convenience. They had been around for more than 10 years. Yet, I wasn't aware of its existence. Not so strange, when I come to think of it.
After all, when are we ever aware of stuff that we don't need and when everything is going fine for us. Only when in need, do we start looking around and realised that there were indeed a lot of stuff that we had missed out on before.
They were subsidised by the government and also funded by charity. Hey, that's one up for the government.
Elaine, a medical social aid with HCA, explained how I could get financial aid. She said I could apply for a withdrawal on my Dependant's Protection Scheme (DPS) and also activate my Home Protection Scheme (HPS - my husband and I had 100% insurance coverage). And, if necessry, I could even make a full withdrawal of my CPF to cover my medical expenses. I could? Yes, she said, because you are stage 4 and terminal.
Okay, that was the first time I learnt that I was under that category, maybe, because I wasn't mentally alert so the impact hadn't sunk in. Or, maybe because of the struggle for the past few months, I was prepared for anything, and nothing fazes me anymore. All I know was that, at that time, dying wasn't an option for me, no, not yet. Although, I realised later that some around me were worried that they were going to lose me.
Maybe, my onco had also half expected me not to pull through, that's why she called in the hospice care. Well, this half-century old lady still got a lot of fight left in her and is not ready to throw in the towel yet.
Now I know what hospice care is about and I am very thankful to Dr Wong for calling them in for me.
Friday, 15 August 2008
2nd Portion of 1st Chemo Dose & Discharge
25 Feb 08, Mon - I was to have the second portion of the 1st dose of chemo.
Earlier, before my first portion of the chemo, I had voiced my concern about vomiting to Dr Wong and she told me there won't be vomiting. I looked at her in disbelief and mentioned something like everybody complained about the vomiting and she responded with, 'who's the one writing the prescription?' Of course, I shut up.
As a precautionary measure, I would only be discharged on 26 Feb, Tue, if everything went well.
The blood test was okay and I was given the okay for the second portion.
The first plug that had been there for nearly a week was removed and nurse set a new one for me.
I had prepared myself to be knocked out again by the pre-meds and had also gone to empty my bladder. For some reason, I didn't feel drowsy and was also able to take my dinner while on the drip. I didn't know what happened as Dr Wong told me that I would be getting the same pre-meds for every chemo.
I was apprehensive, but fortunately, nothing happened during the night.
26 Feb 08, Tue - After the morning check-up, I was told I could go home, finally after 11 days.
I was given a whole bag of medications, including a big bottle of morphine.
On my discharge summary, the principal diagnosis was metastatic cancer breast.
The secondary diagnosis - bilateral pleural effusions - that is, fluid in both lungs
and myocarditis - that is, inflammation of the heart muscle
Myocarditis :
When the cab reached my mum's place, I couldn't lift up one leg to step onto the curb. My mum stays on the 7th level and the lift only stops at the 6th. I had to grab the handrail and pull myself up step by step. My legs were like rubber, or jelly.
Earlier, before my first portion of the chemo, I had voiced my concern about vomiting to Dr Wong and she told me there won't be vomiting. I looked at her in disbelief and mentioned something like everybody complained about the vomiting and she responded with, 'who's the one writing the prescription?' Of course, I shut up.
As a precautionary measure, I would only be discharged on 26 Feb, Tue, if everything went well.
The blood test was okay and I was given the okay for the second portion.
The first plug that had been there for nearly a week was removed and nurse set a new one for me.
I had prepared myself to be knocked out again by the pre-meds and had also gone to empty my bladder. For some reason, I didn't feel drowsy and was also able to take my dinner while on the drip. I didn't know what happened as Dr Wong told me that I would be getting the same pre-meds for every chemo.
I was apprehensive, but fortunately, nothing happened during the night.
26 Feb 08, Tue - After the morning check-up, I was told I could go home, finally after 11 days.
I was given a whole bag of medications, including a big bottle of morphine.
On my discharge summary, the principal diagnosis was metastatic cancer breast.
The secondary diagnosis - bilateral pleural effusions - that is, fluid in both lungs
and myocarditis - that is, inflammation of the heart muscle
Myocarditis :
When you have an infection, your body's immune system produces special cells that release certain chemicals to fight off disease. If the infection affects your heart, the disease-fighting cells enter the heart. However, the chemicals they produce can damage heart muscle, causing it to become thick, swollen, and weak. This leads to symptoms of heart failure.
Other causes of myocarditis may include:
- Allergic reactions to certain medications
- Being around certain chemicals
- Certain diseases that cause inflammation throughout the body
When the cab reached my mum's place, I couldn't lift up one leg to step onto the curb. My mum stays on the 7th level and the lift only stops at the 6th. I had to grab the handrail and pull myself up step by step. My legs were like rubber, or jelly.
Last few days in Onco Ward
After the 1st part of the chemo, and the chest tap, my condition had improved a great deal. The phlegmy cough had stopped, and soon I could do without the oxygen.
My last few days there were mostly for observation.
Before my second Sunday there, a doctor told me that I could make arrangements with the nurses and take the day off to spend time with my family and only checked in again at night - just like a hotel. I never knew one could do that in a hospital. I decided against it as I was feeling rather weak from the effects of chemo.
I found out from Feng Hwang's sister that FH used to do that when she warded there previously. Amusing.
As soon as I was free from the oxygen, I did some walking in the room and the corridor. I realised that I was generally very, very weak from the chemo and from lying down for so many days. Once, a piece of paper was blown to the floor, and instinctively I squatted to pick it up. The moment I had the paper in my hand, I realised that I couldn't stand up. My legs were too weak. I had to use my hands to push against my legs and slowly managed to stand.
Another time I went for a slightly longer walk in the corridor and found that I nearly couldn't make it back to the room. I had been able to breathe on my own without the oxygen, but the exertion was too great.
My last few days there were mostly for observation.
Before my second Sunday there, a doctor told me that I could make arrangements with the nurses and take the day off to spend time with my family and only checked in again at night - just like a hotel. I never knew one could do that in a hospital. I decided against it as I was feeling rather weak from the effects of chemo.
I found out from Feng Hwang's sister that FH used to do that when she warded there previously. Amusing.
As soon as I was free from the oxygen, I did some walking in the room and the corridor. I realised that I was generally very, very weak from the chemo and from lying down for so many days. Once, a piece of paper was blown to the floor, and instinctively I squatted to pick it up. The moment I had the paper in my hand, I realised that I couldn't stand up. My legs were too weak. I had to use my hands to push against my legs and slowly managed to stand.
Another time I went for a slightly longer walk in the corridor and found that I nearly couldn't make it back to the room. I had been able to breathe on my own without the oxygen, but the exertion was too great.
Response to 1st portion of 1st chemo dose
18 Feb 08, Mon - Had my 1st portion of the 1st dose of chemo.
19 Feb 08, Tue - Had chest pain in early hours of Tuesday morning.
20 Feb 08, Wed - Early morning, had dull pain moving all over, especially on the right side and back. At that moment, I just figured that it could be the chemo attacking the cancer cells. I didn't think I was wrong as the pain was all on the areas where I had lumps. I practically didn't feel anything over my left breast. I wasn't sure if this was how chemo worked as I had never heard anybody mentioned it before.
Several days later, the smaller newer lumps at the base of my neck had disappeared. The hard mass of flesh on my right side had also softened. Amazing! And that wasn't even a full dose, only slightly more than a third of a dose. The cancer cells that had been so aggressive for the past few weeks had been stopped in their tracks and some had succumbed to the power of the chemo. I guessed they met their match.
Dr Wong was cool and calm as she checked the progress as though she'd expected such a response.
There were days when I awoke in the morning with lots of stuff in my mouth. It felt like the linings of my mouth were peeling off. Dr Wong said that was thrush, a side-effect of chemo. She prescribed Nystatin to gargle and get rid of the thrush.
19 Feb 08, Tue - Had chest pain in early hours of Tuesday morning.
20 Feb 08, Wed - Early morning, had dull pain moving all over, especially on the right side and back. At that moment, I just figured that it could be the chemo attacking the cancer cells. I didn't think I was wrong as the pain was all on the areas where I had lumps. I practically didn't feel anything over my left breast. I wasn't sure if this was how chemo worked as I had never heard anybody mentioned it before.
Several days later, the smaller newer lumps at the base of my neck had disappeared. The hard mass of flesh on my right side had also softened. Amazing! And that wasn't even a full dose, only slightly more than a third of a dose. The cancer cells that had been so aggressive for the past few weeks had been stopped in their tracks and some had succumbed to the power of the chemo. I guessed they met their match.
Dr Wong was cool and calm as she checked the progress as though she'd expected such a response.
There were days when I awoke in the morning with lots of stuff in my mouth. It felt like the linings of my mouth were peeling off. Dr Wong said that was thrush, a side-effect of chemo. She prescribed Nystatin to gargle and get rid of the thrush.
Thursday, 14 August 2008
Onco Ward - cont'd
One of my friends sent me a bunch of flowers while I was in the onco ward. Nurse told me that no flowers were allowed there. It had something to do with the pollens and low immunity and allergy or infection, or something like that.
We had a newcomer to the room, a lung cancer case, admitted with high fever and coughing with phlegm. She was given a small, cylindrical container to collect samples of her phlegm. Nurse went round checking and recording and took that container of phlegm sample with her. Everywhere she stopped, she set the container down on the trolley table, the very table that patients eat the meals from. The moment the nurse left the room, I gave my table a good wipe with the wet ones that I had with me. I had to do it discreetly so that the other patient won't notice and be offended. Sorry, but I had more than enough problems of my own and I definitely don't need anymore. And if the nurse can't remember to take care of me, I had to take care of myself.
One patient came in with a distended belly. They set a tube in her belly to drain the fluid. After a couple of days, they discharged her with the tube still intact. She left at about 3 pm and was back again that night. She said the fluid could not stop flowing and was dripping all along the corridor to her apartment. While at home, she had to change her pants 5 times as they kept getting wet. Sometimes, it would be better to request for another day's stay for observation or until the condition had stabilised rather than be discharged and then had to rush back to A&E again.
The nurses there are very accommodating. Sometimes, a patient would want to change their bed to another vacated one, and the nurses would comply by switching the beds and bedside cabinets around. Some days, somehow, there seemed to be a lot of patient movements that one doctor commented, 'are they playing musical chairs?'
I admired the guts of the nurses in the onco ward. A lot of patients there are very sick. For the seriously ill, the chances of being carted out in a box were as high as being able to walk out of there. I had spoken to a nurse who had switched over from a banking job to be a nurse and understood that she had specially asked for onco ward as she found it very challenging.
Probably due to the common nature of our illness, there was a lot comraderie among the patients and relatives. We helped watch out for one another when the caregivers were not around. Whatever we didn't want from our meals, especially fruits and sauce, we would pass it to others.
Changi's operations were better organised than SGH. SGH's rice was hard and I found it very difficult to swallow even with hot water added. I gave up struggling and asked them to switch to plain porridge instead. The meal times were erratic, sometimes late.
SGH only provided hot drinks for breaks, no bread. If one is hungry, ask and they can only give biscuits. I was used to the tea breaks in Changi and had expected the same from SGH. Due to the numerous trips away from the room that I had to take for the various tests, that I initially thought I had missed the coffee cart. I found out this was not so and had to ask my family members to get me snacks in case I was hungry in between meals.
For sponge bath, nurses at SGH used wet ones and I didn't feel as clean as I was in Changi. Sponge baths were also done by those in the morning shift.
The bedsheets in SGH were not changed daily and sometimes we had to request for a change. Once, I was given a pair of pyjama pants with dried goo all over, that I noticed only later. Some idiot in me held back from requesting for a new pair and I spent the day trying to clean some off with wet ones and regretting my decision.
Overall , the SGH nurses at onco ward did very well. Very professional and very calm and collected.
We had a newcomer to the room, a lung cancer case, admitted with high fever and coughing with phlegm. She was given a small, cylindrical container to collect samples of her phlegm. Nurse went round checking and recording and took that container of phlegm sample with her. Everywhere she stopped, she set the container down on the trolley table, the very table that patients eat the meals from. The moment the nurse left the room, I gave my table a good wipe with the wet ones that I had with me. I had to do it discreetly so that the other patient won't notice and be offended. Sorry, but I had more than enough problems of my own and I definitely don't need anymore. And if the nurse can't remember to take care of me, I had to take care of myself.
One patient came in with a distended belly. They set a tube in her belly to drain the fluid. After a couple of days, they discharged her with the tube still intact. She left at about 3 pm and was back again that night. She said the fluid could not stop flowing and was dripping all along the corridor to her apartment. While at home, she had to change her pants 5 times as they kept getting wet. Sometimes, it would be better to request for another day's stay for observation or until the condition had stabilised rather than be discharged and then had to rush back to A&E again.
The nurses there are very accommodating. Sometimes, a patient would want to change their bed to another vacated one, and the nurses would comply by switching the beds and bedside cabinets around. Some days, somehow, there seemed to be a lot of patient movements that one doctor commented, 'are they playing musical chairs?'
I admired the guts of the nurses in the onco ward. A lot of patients there are very sick. For the seriously ill, the chances of being carted out in a box were as high as being able to walk out of there. I had spoken to a nurse who had switched over from a banking job to be a nurse and understood that she had specially asked for onco ward as she found it very challenging.
Probably due to the common nature of our illness, there was a lot comraderie among the patients and relatives. We helped watch out for one another when the caregivers were not around. Whatever we didn't want from our meals, especially fruits and sauce, we would pass it to others.
Changi's operations were better organised than SGH. SGH's rice was hard and I found it very difficult to swallow even with hot water added. I gave up struggling and asked them to switch to plain porridge instead. The meal times were erratic, sometimes late.
SGH only provided hot drinks for breaks, no bread. If one is hungry, ask and they can only give biscuits. I was used to the tea breaks in Changi and had expected the same from SGH. Due to the numerous trips away from the room that I had to take for the various tests, that I initially thought I had missed the coffee cart. I found out this was not so and had to ask my family members to get me snacks in case I was hungry in between meals.
For sponge bath, nurses at SGH used wet ones and I didn't feel as clean as I was in Changi. Sponge baths were also done by those in the morning shift.
The bedsheets in SGH were not changed daily and sometimes we had to request for a change. Once, I was given a pair of pyjama pants with dried goo all over, that I noticed only later. Some idiot in me held back from requesting for a new pair and I spent the day trying to clean some off with wet ones and regretting my decision.
Overall , the SGH nurses at onco ward did very well. Very professional and very calm and collected.
3 - 5 Months Left
I found out from my family members that my onco told them if I didn't go for chemo, I would have only 3 - 5 months left to live.
I had wondered why my eldest brother kept wanting to talk to my kids.
And me sister told me not to worry about my kids, that my two elder brothers had made arrangements to take care of their education should anything happen to me. My eldest brother was in Singapore and my second brother was in the States and they were holding long-distance discussions about my kids' future!
So my onco had my family members scrambling and making plans for me while I was receiving treatment oblivious to what was going on. The arrangement looked beautiful but it didn't go down well with me. I am the patient and I have every right to know my condition. Even if there was not much time left for me, I would want to know. I would want to make plans and arrangements for my kids. I was never in denial and I was not one to run away when faced with reality. In fact, I was always talking to people and trawling the net for more information. So there.........
I was disappointed. I had a fight on and my onco didn't seem to be fighting it together with me. She was making plans and strategies on her own and informing my family members, and I was, like, left to follow the leader, sort of fighting 'blind'.
The doctors had told me that chemotherapy was to buy me time. So I have been chemoed, therefore I am living on bought time. Now, I wonder how much time has that bought me. Does being chemoed with more doses meant that more time had been bought for me?
More importantly now, is how to stretch that time and make the purchase worthwhile.
I had wondered why my eldest brother kept wanting to talk to my kids.
And me sister told me not to worry about my kids, that my two elder brothers had made arrangements to take care of their education should anything happen to me. My eldest brother was in Singapore and my second brother was in the States and they were holding long-distance discussions about my kids' future!
So my onco had my family members scrambling and making plans for me while I was receiving treatment oblivious to what was going on. The arrangement looked beautiful but it didn't go down well with me. I am the patient and I have every right to know my condition. Even if there was not much time left for me, I would want to know. I would want to make plans and arrangements for my kids. I was never in denial and I was not one to run away when faced with reality. In fact, I was always talking to people and trawling the net for more information. So there.........
I was disappointed. I had a fight on and my onco didn't seem to be fighting it together with me. She was making plans and strategies on her own and informing my family members, and I was, like, left to follow the leader, sort of fighting 'blind'.
The doctors had told me that chemotherapy was to buy me time. So I have been chemoed, therefore I am living on bought time. Now, I wonder how much time has that bought me. Does being chemoed with more doses meant that more time had been bought for me?
More importantly now, is how to stretch that time and make the purchase worthwhile.
Medical Jargon
One of my friends told me that she read my blog but skipped all the medical terms. I'd probably have done the same too if I had been reading some other blogs with all the medical jargon.
Whenever I write about my medical reports and test results, I had to have another window opened so that I could google all the medical terms that I come across. Those are words I have never seen before in my life.
Most of the time, the sites would have a whole paragraph to explain one word. Sometimes, I would be able to find two- or three-word combinations without problem. However, there are times when my reports come with several words strung together, that after breaking them down into smaller combinations or checking individual words, I still could not make head nor tail out of the whole sentence. Duh?
My onco did not have the time to explain everything to me. At most, she would say was there was improvement in my condition.
On one report, I had statements like :
"The spleen, pancreas, adrenal glands, kidneys, urinary bladder and uterus are unremarkable."
I don't know if 'unremarkable' meant nothing to remark on, or there are no marks on the organs. Since nothing else was mentioned, I take it to mean that these organs are fine.
"The bowel loops are grossly normal."
From what I googled, I think they referred to the small intestines and colon.
Grossly normal - do they meant, my intestines are normal, but looped in a 'grossly' manner? Now, I wonder what an example of beautifully looped bowel loops look like?
On the plus side, since I spent so much time googling, I have a rough idea of the conditions of my organs.
Whenever I write about my medical reports and test results, I had to have another window opened so that I could google all the medical terms that I come across. Those are words I have never seen before in my life.
Most of the time, the sites would have a whole paragraph to explain one word. Sometimes, I would be able to find two- or three-word combinations without problem. However, there are times when my reports come with several words strung together, that after breaking them down into smaller combinations or checking individual words, I still could not make head nor tail out of the whole sentence. Duh?
My onco did not have the time to explain everything to me. At most, she would say was there was improvement in my condition.
On one report, I had statements like :
"The spleen, pancreas, adrenal glands, kidneys, urinary bladder and uterus are unremarkable."
I don't know if 'unremarkable' meant nothing to remark on, or there are no marks on the organs. Since nothing else was mentioned, I take it to mean that these organs are fine.
"The bowel loops are grossly normal."
From what I googled, I think they referred to the small intestines and colon.
Grossly normal - do they meant, my intestines are normal, but looped in a 'grossly' manner? Now, I wonder what an example of beautifully looped bowel loops look like?
On the plus side, since I spent so much time googling, I have a rough idea of the conditions of my organs.
Tuesday, 12 August 2008
Damage to Heart Muscle
The CT scan of the chest and CT cardiac calcium scoring and the ECG did not show anything wrong with my heart even though the blood enzyme proved otherwise.
The cardiac side decided to send me for an echocardiogram (a test that uses sound waves to create a moving picture of the heart and is more detailed than an x-ray image).
The echocardiogram confirmed that there was mild damage to the heart muscle. According to Dr F, fortunately none of the structural muscles was affected. He mentioned that I was lucky that the damage was mild this time, but we cannot be sure where it will hit the next time. A cardiologist also confirmed the heart muscle damage. I understand that once a heart muscle is damage, it would be permanent as the heart cannot repair itself.
Opinions were divided as to what actually caused the damage. The cardiac people believed that the chemo drugs was the cause, while my onco disagreed. She said I was already very weak when I was admitted and my heart and chest area were stressed out from all that coughing.
I understood that herceptin was the one that could cause damage to the heart. I told Dr Wong that I wanted to drop herceptin and she gave me an ultimatum, continue as usual or stop all treatment. Initially, she said she would not be making any changes to the drugs, however, after the cardiologist confirmed the damage, she said she was making some changes, but I never ask and was not told what the changes were. The drugs they gave me were still the same.
The cardiac side decided to send me for an echocardiogram (a test that uses sound waves to create a moving picture of the heart and is more detailed than an x-ray image).
The echocardiogram confirmed that there was mild damage to the heart muscle. According to Dr F, fortunately none of the structural muscles was affected. He mentioned that I was lucky that the damage was mild this time, but we cannot be sure where it will hit the next time. A cardiologist also confirmed the heart muscle damage. I understand that once a heart muscle is damage, it would be permanent as the heart cannot repair itself.
Opinions were divided as to what actually caused the damage. The cardiac people believed that the chemo drugs was the cause, while my onco disagreed. She said I was already very weak when I was admitted and my heart and chest area were stressed out from all that coughing.
I understood that herceptin was the one that could cause damage to the heart. I told Dr Wong that I wanted to drop herceptin and she gave me an ultimatum, continue as usual or stop all treatment. Initially, she said she would not be making any changes to the drugs, however, after the cardiologist confirmed the damage, she said she was making some changes, but I never ask and was not told what the changes were. The drugs they gave me were still the same.
Chest Tab - Right Chest
Sometimes, with chemo, the pleural effusion will resolve itself. In my case, it didn't, so I was still highly dependent on oxygen.
The ward doc tried to reduce the volume of oxygen, but after checking on the fingertip pulse oximeter, he had to set it back to 5 ltrs again. He mentioned that we had to do a chest tap. Memories of Changi came flooding back. I asked if a syringe could be used to draw fluid instead, and, surprise, he said he would use a syringe.
There were certain things to watch out for in doing a chest tap, and that is that there could be bleeding or air could get sucked in.
I was to have the chest tap done on the hospital bed. I sat at the edge of one side of the bed, holding onto the trolley table. The doc sat on the bed behind me and used a syringe to tap the fluid from my chest. He had with him a junior doctor that he was also teaching and guiding and a nurse to give assistance. He said that they would be drawing the fluid until I started coughing. I didn't understand what he meant. I had stopped coughing ever since they gave me cough mixture to stop my cough after I had the chest pain so that my chest would not be stressed further.
Initially, when the tapping started, I felt fine. But as more and more fluid was tapped, I could feel the cough coming and tried to control myself. Then, suddenly, it felt as though the right side of my throat had a lot of air bubbling up. I was coughing like crazy by now and they had to stop tapping. They had managed to tap about 700 ml of fluid from my right chest. The doc said he had wanted to tap more if I hadn't started coughing.
The whole procedure lasted half an hour or less. After that, my breathing improved. It was a relief.
Slowly, I tried to wean myself from the oxygen as I was worried that I might be too dependent on it.
The ward doc tried to reduce the volume of oxygen, but after checking on the fingertip pulse oximeter, he had to set it back to 5 ltrs again. He mentioned that we had to do a chest tap. Memories of Changi came flooding back. I asked if a syringe could be used to draw fluid instead, and, surprise, he said he would use a syringe.
There were certain things to watch out for in doing a chest tap, and that is that there could be bleeding or air could get sucked in.
I was to have the chest tap done on the hospital bed. I sat at the edge of one side of the bed, holding onto the trolley table. The doc sat on the bed behind me and used a syringe to tap the fluid from my chest. He had with him a junior doctor that he was also teaching and guiding and a nurse to give assistance. He said that they would be drawing the fluid until I started coughing. I didn't understand what he meant. I had stopped coughing ever since they gave me cough mixture to stop my cough after I had the chest pain so that my chest would not be stressed further.
Initially, when the tapping started, I felt fine. But as more and more fluid was tapped, I could feel the cough coming and tried to control myself. Then, suddenly, it felt as though the right side of my throat had a lot of air bubbling up. I was coughing like crazy by now and they had to stop tapping. They had managed to tap about 700 ml of fluid from my right chest. The doc said he had wanted to tap more if I hadn't started coughing.
The whole procedure lasted half an hour or less. After that, my breathing improved. It was a relief.
Slowly, I tried to wean myself from the oxygen as I was worried that I might be too dependent on it.
Computed Tomography (CT)
22 Feb 08 - I was sent for a CT scan of my chest and CT cardiac calcium scoring.
Results of CT chest :
1. No CT evidence of pulmonary embolism (no blood clot in the lungs)
2. Metastasis in the left upper lobe (cancer spread to upper lobe of left lung)
3. Bilateral pleural effusions and pericardial effusion, deemed ominous
- both lungs had fluid, and the sac around the heart had fluid too, which was bad
CT cardiac calcium scoring :
- normal for my age, gender and ethnicity
Results of CT chest :
1. No CT evidence of pulmonary embolism (no blood clot in the lungs)
2. Metastasis in the left upper lobe (cancer spread to upper lobe of left lung)
3. Bilateral pleural effusions and pericardial effusion, deemed ominous
- both lungs had fluid, and the sac around the heart had fluid too, which was bad
CT cardiac calcium scoring :
- normal for my age, gender and ethnicity
Monday, 11 August 2008
Albumin
To protect my healthy cells, the ward doc prescribed albumin for me for three days, i.e, two bottles per day.
The albumin is extracted from human blood. The blood is normally from donors and the packaging said that it was not for sale.
The albumin looks exactly like raw egg white, the same yellowish colour and the same thick consistency. It is always kept chilled.
The two bottles were given one after another and was administered intravenously. My blood vessels are fine and because of the thick consistency, it took me quite sometime to empty the bottles.
Some people developed allergic reaction to albumin, fortunately, I did not.
The albumin is extracted from human blood. The blood is normally from donors and the packaging said that it was not for sale.
The albumin looks exactly like raw egg white, the same yellowish colour and the same thick consistency. It is always kept chilled.
The two bottles were given one after another and was administered intravenously. My blood vessels are fine and because of the thick consistency, it took me quite sometime to empty the bottles.
Some people developed allergic reaction to albumin, fortunately, I did not.
After the 1st dose of chemo
After the 1st dose of chemo, my menses came, which caught me by surprise, as I had always heard that chemo would stop the menstruation even if one is not menopausal. And when I moved my bowels, there was blood on my stools. Also, I found dried blood in my nostrils. Initially, I was alarmed - was chemo going to cause me to bleed from practically every orifice?
Dr Wong assured me that the menses was normal. And, she asked if I had piles - that's right, I had not produced a bloody mess, the blood was just on the surface - so it was the piles. She gave me diosmin/hesperidin to reduce the size of the piles. Then, I recalled that at Changi, when I was on oxygen using the nasal prong, I had dried blood in my nostrils too. Ignoramus!
Ignorance is bliss, but at times, ignorance can make fools out of us, sometimes in a hilarious way, that is, if you can laugh at yourself.
Dr Wong assured me that the menses was normal. And, she asked if I had piles - that's right, I had not produced a bloody mess, the blood was just on the surface - so it was the piles. She gave me diosmin/hesperidin to reduce the size of the piles. Then, I recalled that at Changi, when I was on oxygen using the nasal prong, I had dried blood in my nostrils too. Ignoramus!
Ignorance is bliss, but at times, ignorance can make fools out of us, sometimes in a hilarious way, that is, if you can laugh at yourself.
Preventive Measures for Heart Attack
Steps were taken to prevent a heart attack.
I was prescribed 5 ml of morphine 3 times a day, and medicine to thin the blood.
I was to have ECG done 3 times a day and blood samples taken 3 times a day.
I was confined to bed to minimize exertion. Anyway, I was still on oxygen and I couldn't get anywhere.
The morphine caused me to have vivid dreams and I was drowsy most of the time. Some of the dreams were very colourful and some were mostly black. The worst was that I couldn't sleep and yet, I couldn't stay awake. I was aware of the happenings in the room. At times when I lapsed off to sleep, I heard people talking to me, and when I replied, I woke myself up only to find that I had been talking to myself. It was ridiculous. I was not in control of my mind. The effects of morphine were such and I just could not understand why anybody would want to take it and enjoyed being on 'high'. Initially, I was not told, but later, found out that morphine also causes constipation. To correct that, I was put on senna and lactulose.
I complained to the ward doc about the morphine and asked to be taken off it. He only reduced my dosage.
I was prescribed 5 ml of morphine 3 times a day, and medicine to thin the blood.
I was to have ECG done 3 times a day and blood samples taken 3 times a day.
I was confined to bed to minimize exertion. Anyway, I was still on oxygen and I couldn't get anywhere.
The morphine caused me to have vivid dreams and I was drowsy most of the time. Some of the dreams were very colourful and some were mostly black. The worst was that I couldn't sleep and yet, I couldn't stay awake. I was aware of the happenings in the room. At times when I lapsed off to sleep, I heard people talking to me, and when I replied, I woke myself up only to find that I had been talking to myself. It was ridiculous. I was not in control of my mind. The effects of morphine were such and I just could not understand why anybody would want to take it and enjoyed being on 'high'. Initially, I was not told, but later, found out that morphine also causes constipation. To correct that, I was put on senna and lactulose.
I complained to the ward doc about the morphine and asked to be taken off it. He only reduced my dosage.
Sunday, 10 August 2008
Chest Pain
After the chemo iv, my bladder was full and I had to relieve myself a couple of times by using a commode. I had just got back onto the bed after I had relieve myself for the third time, when I felt a sharp pain in my chest, slightly to the left. I told a nurse who happened to be in the room and she went to page for the doc on night duty. Later, she came with an ECG machine and said the doc wanted one done. As I was in pain, I asked when would the doc be coming and was told after he had seen the ECG.
It was a long wait before the doc came. After checking and asking some questions, he commented that my ECG looked ok, but he would be giving me some medicine to relief the pain. It was another long wait and I had to call for the nurse again, before I was given my medicine, 5ml of morphine.
In the morning, the sharp pain had gone and was replaced by dull muscle aches in the chest area.
I told Dr Wong when she came to check on me. Initially, she didn't believe me and even suggested that it was probably the chemo drugs attacking the cancer cells. My cancer cells were all on my right and the left was clean, so how could that be possible. I had a hard time trying to convince her and she left without saying anything specific.
Sometime later, a Dr F said that as I had complained of chest pain, Dr Wong had asked him to come and find out more details from me and to ascertain the cause of the pain.
I was asked to describe what happened and what I had felt before and after the morphine. He said the heart is actually just to the left of the breastbone and not so far left. That was where I had felt the pain.
Subsequently, blood samples were taken to test for blood enzyme. The blood enzymes would show if there was any damage to the heart.
A CT scan of the chest and a CT Cardiac Calcium Scoring were arranged for 22 Feb.
It was a long wait before the doc came. After checking and asking some questions, he commented that my ECG looked ok, but he would be giving me some medicine to relief the pain. It was another long wait and I had to call for the nurse again, before I was given my medicine, 5ml of morphine.
In the morning, the sharp pain had gone and was replaced by dull muscle aches in the chest area.
I told Dr Wong when she came to check on me. Initially, she didn't believe me and even suggested that it was probably the chemo drugs attacking the cancer cells. My cancer cells were all on my right and the left was clean, so how could that be possible. I had a hard time trying to convince her and she left without saying anything specific.
Sometime later, a Dr F said that as I had complained of chest pain, Dr Wong had asked him to come and find out more details from me and to ascertain the cause of the pain.
I was asked to describe what happened and what I had felt before and after the morphine. He said the heart is actually just to the left of the breastbone and not so far left. That was where I had felt the pain.
Subsequently, blood samples were taken to test for blood enzyme. The blood enzymes would show if there was any damage to the heart.
Cardiac enzyme studies measure the levels of the enzyme creatine phosphokinase (CPK, CK) and the protein troponin (TnI, TnT) in the blood. Low levels of these enzymes and proteins are normally found in your blood, but if your heart muscle is injured, such as from a heart attack, the enzymes and proteins leak out of damaged heart muscle cells, and their levels in the bloodstream rise.
Because some of these enzymes and proteins are also found in other body tissues, their levels in the blood may rise when those other tissues are damaged. Cardiac enzyme studies must always be compared with your symptoms, your physical examination findings, and electrocardiogram (EKG, ECG) results.
According to Dr F, the blood enzyme test results indicate damage to the heart, but he also mentioned that subsequent tests indicated an improvement, which was a little unusual as it normally takes a couple of days for the blood enzymes to return to normal.A CT scan of the chest and a CT Cardiac Calcium Scoring were arranged for 22 Feb.
Cardiac calcium scoring uses a special X-ray test called computed tomography (CT) to check for the buildup of calcium in plaque on the walls of the arteries of the heart (coronary arteries). This test is used to check for heart disease in an early stage and to determine how severe it is. Cardiac calcium scoring is also called coronary artery calcium scoring.
The coronary arteries supply blood to the heart. Normally, the coronary arteries do not contain calcium. Calcium in the coronary arteries is a sign of coronary artery disease (CAD).
CT of Chest,, Abdomen and Pelvis
The CT scan results as compared to 4 Dec 2007 :
1. interval development of moderate to large bilateral pleural effusions with bilateral lower lobe and right middle lobe atelectasis.
- both my lungs had fluid
- the lower lobes of both lungs had partial collapse
- middle lobe of the right lung had total collapse
2. new right lateral chest wall subcentimetre metastatic nodule
- right chest wall had new lumps
3. increase in the number of liver metastases
- more spots found in the liver
4. increase in the number of bony metastases
- more spots found on the bones
The cancer had spread to my liver and parts of my vertebrae and ribs. The largest lesion was on the L1 (1st lumbar vertebra). measuring 3.1x2.1cm. That probably explained the backache, but I still did not understand how the pain disappeared after the chest tap. Fortunately, the bony spinal canal was not compromised. The fractured rib was shown to be healing.
1. interval development of moderate to large bilateral pleural effusions with bilateral lower lobe and right middle lobe atelectasis.
- both my lungs had fluid
- the lower lobes of both lungs had partial collapse
- middle lobe of the right lung had total collapse
2. new right lateral chest wall subcentimetre metastatic nodule
- right chest wall had new lumps
3. increase in the number of liver metastases
- more spots found in the liver
4. increase in the number of bony metastases
- more spots found on the bones
The cancer had spread to my liver and parts of my vertebrae and ribs. The largest lesion was on the L1 (1st lumbar vertebra). measuring 3.1x2.1cm. That probably explained the backache, but I still did not understand how the pain disappeared after the chest tap. Fortunately, the bony spinal canal was not compromised. The fractured rib was shown to be healing.
My Chemo Drugs
Pre-meds :
1. Brand name : Benadryl; Generic name : Diphenhydramine
An antihistamine for treating rashes and itchiness (in my case)
Side effects :
dry mouth, nose, and throat, drowsiness, dizziness, nausea, vomiting, loss of appetite, constipation, increased chest congestion, headache, muscle weakness, excitement (especially in children), nervousness, low blood pressure
2. Brand name : Kytril; Generic name : Granisetron
For nausea and vomitting
Side effects :
headache, weakness, stomach pain, heartburn, constipation, diarrhea, pain, dizziness, drowsiness,difficulty falling asleep or staying asleep, nervousness, cough, fever
Antibody
Brand name : Herceptin; Generic name : Trastuzumab
Heart muscle damage that can lead to heart failure; can also affect the lungs, causing severe or life-threatening breathing problems; allergic reactions like drop in blood pressure, shortness of breath, rashes, wheezing; fever, chills, pain, weakness, nausea, vomitting, diarrhea, headache and rashes.
Chemo Drugs
1. Brand name - Taxotere; Generic name - Docetaxel
Taken from a compound extracted from the needles of yew trees.
Side effects :
drop in number of white and red blood cells
allergic reactions to chemo, like itching
fluid retention
diarrhea
nausea/vomiting
hair loss
fatigue
muscle pain and bone pain
rash
nail changes
eye tearing
numbness, tingling or burning sensations in hands and feet, or weakness
infection
mouth and throat irritation
infusion site reaction like hyperpigmentation
inflammation or swelling of the vein
increase risk of serious reactions (possibly fatal) in patients with liver problems
Severe fluid retention occurred in 6.5% (6/92) of patients despite use of a 3-day dexamethasone premedication regimen. It was characterized by one or more of the following events: poorly tolerated peripheral edema, generalized edema, pleural effusion requiring urgent drainage, dyspnea at rest, cardiac tamponade, or pronounced abdominal distention (due to ascites)
2. Brand name : Paraplatin; Generic name : Carboplatin
A platinum coordination compound
Interferes with growth of cancer cells
Side effects :
Pain at place of injection
Black, tarry stools
Blood in urine or stools
Cough or hoarseness, accompanied by fever or chills
Fever or chills
Lower back or side pain, accompanied by fever or chills
Numbness or tingling in fingers or toes
Painful or difficult urination, accompanied by fever or chills
Pinpoint red spots on skin
Skin rash or itching
Unusual bleeding or bruising
Unusual tiredness or weakness
Lower white blood cells
Lower red blood cells
Lower body's resistance to infection
Nausea/vomiting
Loss of appetite
Sore mouth and ulcers
Hair loss
Affect urination
1. Brand name : Benadryl; Generic name : Diphenhydramine
An antihistamine for treating rashes and itchiness (in my case)
Side effects :
dry mouth, nose, and throat, drowsiness, dizziness, nausea, vomiting, loss of appetite, constipation, increased chest congestion, headache, muscle weakness, excitement (especially in children), nervousness, low blood pressure
2. Brand name : Kytril; Generic name : Granisetron
For nausea and vomitting
Side effects :
headache, weakness, stomach pain, heartburn, constipation, diarrhea, pain, dizziness, drowsiness,difficulty falling asleep or staying asleep, nervousness, cough, fever
Antibody
Brand name : Herceptin; Generic name : Trastuzumab
An antibody that targets cancer cells that "overexpress", or make too much of, a protein called HER–2 or erb B2, which is found on the surface of some cancer cells. Herceptin attaches to the HER–2 positive cancer cells and slows or stops the growth of the cells. Herceptin is used only to treat breast cancers that are HER–2 positive. HER–2 positive cancers overexpress the HER–2 protein or have amplification (too many copies) of the HER–2 gene.
Approximately 20 to 30 percent of breast cancers overexpress HER–2. These tumors tend to grow faster and are generally more likely to recur than tumors that do not overproduce HER–2.
Side Effects :Heart muscle damage that can lead to heart failure; can also affect the lungs, causing severe or life-threatening breathing problems; allergic reactions like drop in blood pressure, shortness of breath, rashes, wheezing; fever, chills, pain, weakness, nausea, vomitting, diarrhea, headache and rashes.
Chemo Drugs
1. Brand name - Taxotere; Generic name - Docetaxel
Taken from a compound extracted from the needles of yew trees.
Side effects :
drop in number of white and red blood cells
allergic reactions to chemo, like itching
fluid retention
diarrhea
nausea/vomiting
hair loss
fatigue
muscle pain and bone pain
rash
nail changes
eye tearing
numbness, tingling or burning sensations in hands and feet, or weakness
infection
mouth and throat irritation
infusion site reaction like hyperpigmentation
inflammation or swelling of the vein
increase risk of serious reactions (possibly fatal) in patients with liver problems
Severe fluid retention occurred in 6.5% (6/92) of patients despite use of a 3-day dexamethasone premedication regimen. It was characterized by one or more of the following events: poorly tolerated peripheral edema, generalized edema, pleural effusion requiring urgent drainage, dyspnea at rest, cardiac tamponade, or pronounced abdominal distention (due to ascites)
2. Brand name : Paraplatin; Generic name : Carboplatin
A platinum coordination compound
Interferes with growth of cancer cells
Side effects :
Pain at place of injection
Black, tarry stools
Blood in urine or stools
Cough or hoarseness, accompanied by fever or chills
Fever or chills
Lower back or side pain, accompanied by fever or chills
Numbness or tingling in fingers or toes
Painful or difficult urination, accompanied by fever or chills
Pinpoint red spots on skin
Skin rash or itching
Unusual bleeding or bruising
Unusual tiredness or weakness
Lower white blood cells
Lower red blood cells
Lower body's resistance to infection
Nausea/vomiting
Loss of appetite
Sore mouth and ulcers
Hair loss
Affect urination
Saturday, 9 August 2008
My first dose of chemo
18 Feb 08, Monday - I was to have a ct scan of my chest, abdomen and pelvis done in the morning.
Dr Wong told me that she planned to start me on a smaller weekly dose instead of a full dose every three weeks, as I was very sick then. She would be writing the prescription and I would be having my chemo that afternoon. I was to have my first dose of chemo, well, about one-third of a dose (I found out later that it was more than one-third).
Then she led my husband, eldest brother and third sis-in-law out of the room to talk to them. Oh, crap! So Dr Wong didn't want me to hear. I didn't like that! What was it about my condition that she could not discuss in front of me? After a long talk with my family members, she didn't come back to me.
My onco is smart. I didn't know what she told my family members and she got my husband to sign the permission for chemo even though I told her I could sign for it myself. While she told me that she would give me one third of the dose for 3 weeks instead of a full dose every three weeks, she actually sneaked in more than a third of the dose for each week. Well, she must have found me to be a difficult patient too, always questioning her decision.
I had a plug set in my left arm. This is for iv feed of the chemo drugs and sometimes for drawing of blood for testing.
Before they administered the chemo, the nurse would flush the plug with saline solution to ensure there was no blockage. Then, they connect 3 joints of valves in a row and connect it to the plug. One is for the saline solution. As for the other two valves, one of them has two inlets, so there is one for each drug. The tube of the drug that was running would be threaded through a machine that would give a beeping noise to alert the nurse when the drug runs out. The nurse would then remove this tube from the machine and another one would be put through, at the same time the corresponding valves would either be closed or opened. This would ensure smooth continuation from one pack of drug to the next and save the trouble of having to disconnect and re-connect.
Before chemo, I was given panadol and the pre-med, benadryl (or benadrill) and kytril. Both are given by iv. Benadryl is for itching. Kytril is to prevent nausea and vomitting. I had to wait half an hour for the pre-meds to take effect. Then, it was Herceptin, followed by the chemo drugs, Docetaxol and Carboplatin. The drugs are prescribed according to the patient's body weight, and each is mixed with 250 ml of saline solution and administered by iv.
I think benadryl contains steroid as it causes a biting sensation on our bottoms and the sensation was almost immediate. It also caused me to be so drowsy, I couldn't sleep but I also couldn't stay awake. I was in some kind of stupor and I really hated it. As it was the first time I was using benadryl, I was really stoned. All in, my chemo iv lasted a few hours, and at the end of it, I had to force myself to be alert and had a late dinner. Also, by then my bladder was very full with 3 x 250 ml of saline solution.
Dr Wong told me that she planned to start me on a smaller weekly dose instead of a full dose every three weeks, as I was very sick then. She would be writing the prescription and I would be having my chemo that afternoon. I was to have my first dose of chemo, well, about one-third of a dose (I found out later that it was more than one-third).
Then she led my husband, eldest brother and third sis-in-law out of the room to talk to them. Oh, crap! So Dr Wong didn't want me to hear. I didn't like that! What was it about my condition that she could not discuss in front of me? After a long talk with my family members, she didn't come back to me.
My onco is smart. I didn't know what she told my family members and she got my husband to sign the permission for chemo even though I told her I could sign for it myself. While she told me that she would give me one third of the dose for 3 weeks instead of a full dose every three weeks, she actually sneaked in more than a third of the dose for each week. Well, she must have found me to be a difficult patient too, always questioning her decision.
I had a plug set in my left arm. This is for iv feed of the chemo drugs and sometimes for drawing of blood for testing.
Before they administered the chemo, the nurse would flush the plug with saline solution to ensure there was no blockage. Then, they connect 3 joints of valves in a row and connect it to the plug. One is for the saline solution. As for the other two valves, one of them has two inlets, so there is one for each drug. The tube of the drug that was running would be threaded through a machine that would give a beeping noise to alert the nurse when the drug runs out. The nurse would then remove this tube from the machine and another one would be put through, at the same time the corresponding valves would either be closed or opened. This would ensure smooth continuation from one pack of drug to the next and save the trouble of having to disconnect and re-connect.
Before chemo, I was given panadol and the pre-med, benadryl (or benadrill) and kytril. Both are given by iv. Benadryl is for itching. Kytril is to prevent nausea and vomitting. I had to wait half an hour for the pre-meds to take effect. Then, it was Herceptin, followed by the chemo drugs, Docetaxol and Carboplatin. The drugs are prescribed according to the patient's body weight, and each is mixed with 250 ml of saline solution and administered by iv.
I think benadryl contains steroid as it causes a biting sensation on our bottoms and the sensation was almost immediate. It also caused me to be so drowsy, I couldn't sleep but I also couldn't stay awake. I was in some kind of stupor and I really hated it. As it was the first time I was using benadryl, I was really stoned. All in, my chemo iv lasted a few hours, and at the end of it, I had to force myself to be alert and had a late dinner. Also, by then my bladder was very full with 3 x 250 ml of saline solution.
Thursday, 7 August 2008
Decision to start chemo
16 Feb 08, Sat - Dr Wong, my principal doctor in this case, wanted me to start on chemo on Monday, 18 Feb. Before that, she wanted to see my husband at 8.00 am on Monday.
I had heard about the effects chemo drugs had on the heart, and told Dr Wong that I was concerned about my heart and my current condition. She said they would monitor and that I could go home after the chemo as she didn't want me catch any infection there. As that would be my first chemo, I requested to stay 1 more day for observation.
17 Feb 08, Sun - Morning, I asked an attendant to send me for shower. As she went to get a commode to transport me to the bathroom, I packed my stuff properly and went through mentally the things that I would be doing. I would be without oxygen for the duration of the bath and I had to make it a quick one. I hurried through the shower and was drying up when I realised that I had run into breathing problems again. I threw on my pyjamas and urged the attendant to rush me back to the room. She hesitated as I hadn't finished buttoning up. She was concerned about my modesty. I needed to get to oxygen fast. Well, I am not exactly totally indecent. It's okay, I told her, you start moving first and I'd button up on the way. I was gasping for air all the way and fortunately we made it back alright otherwise both of us would be in trouble. I'd forgotten to take into account the enclosed space of the shower cubicle and the steam from the hot shower. I was not going to attempt that anymore.
I was now highly dependent on oxygen. It was set at no. 5. I understood it to be 5 ltrs, but I wasn't very sure what that actually meant. I couldn't talk because whenever I opened my mouth to talk, I would start coughing. I was unable to lie flat and had to have the upper half of my bed elevated.
The ward doctor wanted to tap the fluid from my lungs but Dr Wong said to wait for the chemo first because she didn't like the idea of having too many punctures made. I didn't understand the significance of this until much later when I was burnt by the chemo drugs due to a leak caused by a puncture in the vein. Dr Wong had not wanted the chemo drugs to leak out and cause complications.
I have been visited by so many doctors, both junior and senior. Most of the time I cannot catch or remember their names when they introduce themselves. So usually I recognise them by their faces.
Usually the most junior doctor (or medical officer(?) - they are the ones still doing the rounds of the various departments before they decide on a specific area) would be the earliest to see me in the morning. There would be the ward doctor, my doctor - Dr Wong, and the others would be depending on what sort of problems I run into.
I had heard about the effects chemo drugs had on the heart, and told Dr Wong that I was concerned about my heart and my current condition. She said they would monitor and that I could go home after the chemo as she didn't want me catch any infection there. As that would be my first chemo, I requested to stay 1 more day for observation.
17 Feb 08, Sun - Morning, I asked an attendant to send me for shower. As she went to get a commode to transport me to the bathroom, I packed my stuff properly and went through mentally the things that I would be doing. I would be without oxygen for the duration of the bath and I had to make it a quick one. I hurried through the shower and was drying up when I realised that I had run into breathing problems again. I threw on my pyjamas and urged the attendant to rush me back to the room. She hesitated as I hadn't finished buttoning up. She was concerned about my modesty. I needed to get to oxygen fast. Well, I am not exactly totally indecent. It's okay, I told her, you start moving first and I'd button up on the way. I was gasping for air all the way and fortunately we made it back alright otherwise both of us would be in trouble. I'd forgotten to take into account the enclosed space of the shower cubicle and the steam from the hot shower. I was not going to attempt that anymore.
I was now highly dependent on oxygen. It was set at no. 5. I understood it to be 5 ltrs, but I wasn't very sure what that actually meant. I couldn't talk because whenever I opened my mouth to talk, I would start coughing. I was unable to lie flat and had to have the upper half of my bed elevated.
The ward doctor wanted to tap the fluid from my lungs but Dr Wong said to wait for the chemo first because she didn't like the idea of having too many punctures made. I didn't understand the significance of this until much later when I was burnt by the chemo drugs due to a leak caused by a puncture in the vein. Dr Wong had not wanted the chemo drugs to leak out and cause complications.
I have been visited by so many doctors, both junior and senior. Most of the time I cannot catch or remember their names when they introduce themselves. So usually I recognise them by their faces.
Usually the most junior doctor (or medical officer(?) - they are the ones still doing the rounds of the various departments before they decide on a specific area) would be the earliest to see me in the morning. There would be the ward doctor, my doctor - Dr Wong, and the others would be depending on what sort of problems I run into.
Farewell to the 22-year-old
I had met Feng Hwang, a 22-year-old girl, during my visits to the herbalist. What had initially been thought to be a persistent cough turned out to be cancer. I wasn't clear where her cancer started, but even with chemotherapy and radiation, the cancer spread to her heart and brains. Seemed that one lump in her brain was not responsive to therapy.
When I went to the onco ward, she was already there. Initially, when I was there, she was still alert and able to feed herself. As the days wore on, her condition deteriorated rapidly. Because of the pressure on her brain, she could not see clearly. By then, she could barely eat. Her mum and sister took turns to watch over her day and night.
The day times were the worst for her. I wasn't sure if it was due to the warm weather in the day, because there were times when her eyes rolled and her tongue curled upwards. The doc came but couldn't do anything for her. Sometimes she wasn't even aware that her friends were visiting. But then, at night, she would become alert and could even ask the nurse to help wheeled her to the toilet.
I was discharged on 26 Feb, and she passed away on 29 Feb 2008.
When I went to the onco ward, she was already there. Initially, when I was there, she was still alert and able to feed herself. As the days wore on, her condition deteriorated rapidly. Because of the pressure on her brain, she could not see clearly. By then, she could barely eat. Her mum and sister took turns to watch over her day and night.
The day times were the worst for her. I wasn't sure if it was due to the warm weather in the day, because there were times when her eyes rolled and her tongue curled upwards. The doc came but couldn't do anything for her. Sometimes she wasn't even aware that her friends were visiting. But then, at night, she would become alert and could even ask the nurse to help wheeled her to the toilet.
I was discharged on 26 Feb, and she passed away on 29 Feb 2008.
SGH Oncology Ward
16 Feb 08 - After lunch, I was moved to Room 22, bed 2, ward 48 which is the oncology ward.
Room 22 is split into 2 rooms actually, the one I was in had numbers 1 - 6 and I presumed the other one is 7 - 12. The onco ward is different from ward 53 in that this had floor to ceiling walls seperating the rooms, with only a 1 foot high by 2 feet wide opening near the ceiling between the rooms. I had asked for class C but probably due to non-availability of beds, I was upgraded to class B2.
The oncology ward is practically the only ward where you witnessed at least 1 death a day.
The layout of the room is such that from the doorway, on the right side is beds 1, 2 and 3 (nearest the window), and I think it continued with 4, 5, and 6 on the left side of the door. Directly above each bed is a small circulating ceiling fan.
When I arrived, the patient in bed 3, an Indian woman in her late 30s, was the most critical. She was on oxygen and couldn't eat. Usually during the day, she seemed better, but by nighttime, she would be throwing up. On the night of 18 Feb, her condition took a turn for the worst. She couldn't breathe. They brought in a stand fan, but I could still hear her gasping for breath. Her husband, who happened to be with her that night, was at wits end. Her relatives came to pray for her and kept advising her to 'let go'. She struggled and hung on through the night. The curtain was drawn and I couldn't see, but I felt for her to hear her struggling so. By morning, her family and relatives were all there, and her breathing had gone weaker but she was still hanging on. Then I heard one of her male visitors telling another, that 'she's a fighter, but now, we don't want her to fight anymore.' A few minutes after this comment was made, she was gone.
I had spoken to one of her relatives and found out that she had had relapses and the cancer had spread all over her body. They couldn't bear to see her suffering and wanted her to let go.
The nurses were called in and the machine (sorry, I don't know what this is called) registered a straight line. That's it. Didn't see any doctor coming in to certify the death. No resuscitation attempt. Nothing. The family was allowed time to grief. After that, two nurses would come and clean the body and change the clothes. Then, two men would appear with a box for the body. They would close all the curtains and by the time the curtains were drawn aside, the body, box and men had all disappeared.
Next, comes the cleaners who cleaned the furniture, surrounding area, changed the bedsheet and pillow case, changed the curtains and the bed is ready for the next patient.
I had found out from a relative of the patient in bed 5, that before I was transferred to bed 2 in the afternoon, they had cleared out a body from bed 2 that very morning. They hadn't told me earlier as they didn't want to frighten me. Should I be afraid? Well, after witnessing the first death, and after being told that death is like an everyday affair in the onco ward, I pretty much concluded that an onco patient had not much of a choice. Just accept the fact that even the bedsheets and pyjamas had used by a patient who died, then sent for washing, dried and circulated.
In my 11-day stay there, I witnessed a total of 4 deaths in my room. One was an old lady who choked to death. She'd been trying to throw up in the past few days, but the doc only ordered an x-ray later. On the day she died, the doc and nurses were there trying to clear the choke, when the light started flashing. That was the only time, we saw nurses rushing into the room. It was all in vain. They removed a bottle that contained a black round stuff the size of a fishball.
The other 2 deaths were just waiting for time, i.e., brought in at night with family members sniffing away, and then passed on the next morning. Over time, you sort of would be able to tell which ones are just sick and which ones are waiting for time.
Oh, this reminds me. I want to tell my family members that if I ever reach this stage, I don't want to be sent to the onco ward to wait for my time. I want to be brought home and they can start on the preparations without disturbing the other patients.
Fortunately, most of the deaths in my room happened in the earlier part of the day and not in the evenings when people were most likely to visit. I know at least one of my friends would freak out if she were to encounter this and I didn't want her to visit me.
There was once a patient in the next room died. The remaining patients and whatever furniture that could be moved were moved to the corridor. We found that the the room had to be dis-infected. I happened to be coming back from the toilet, when I saw a curtain sailed over through the opening in the wall. I went to a nurse who happened to be near our door and told her about it. She marched straight over and the offending curtain disappeared from view.
For most of the patients in the onco ward, our immunities are low and we are more likely to catch viruses and germs from others.
Once, a patient was transferred to our room and her family members followed, all dressed in protective garbs and masks. Stuff like this is enough to make you want to run away from the ward. Fortunately, a short while later, she was moved to an isolation ward. Apparently there were complaints from patients and family members in the ward that she was transferred from.
I kept my mind occupied by meditating. Sometimes, my mind idled and I started wondering who's next. The more serious ones were on oxygen and I was on oxygen too. When that happened, I would force myself to change my train of thoughts and turned to meditation.
Somehow, we normally didn't discussed the deaths in front of newcomers. Only when they had witnessed and if they were ready to talk, then we asked if they were affected.
Sounds depressing, but that's life in the onco ward.
Room 22 is split into 2 rooms actually, the one I was in had numbers 1 - 6 and I presumed the other one is 7 - 12. The onco ward is different from ward 53 in that this had floor to ceiling walls seperating the rooms, with only a 1 foot high by 2 feet wide opening near the ceiling between the rooms. I had asked for class C but probably due to non-availability of beds, I was upgraded to class B2.
The oncology ward is practically the only ward where you witnessed at least 1 death a day.
The layout of the room is such that from the doorway, on the right side is beds 1, 2 and 3 (nearest the window), and I think it continued with 4, 5, and 6 on the left side of the door. Directly above each bed is a small circulating ceiling fan.
When I arrived, the patient in bed 3, an Indian woman in her late 30s, was the most critical. She was on oxygen and couldn't eat. Usually during the day, she seemed better, but by nighttime, she would be throwing up. On the night of 18 Feb, her condition took a turn for the worst. She couldn't breathe. They brought in a stand fan, but I could still hear her gasping for breath. Her husband, who happened to be with her that night, was at wits end. Her relatives came to pray for her and kept advising her to 'let go'. She struggled and hung on through the night. The curtain was drawn and I couldn't see, but I felt for her to hear her struggling so. By morning, her family and relatives were all there, and her breathing had gone weaker but she was still hanging on. Then I heard one of her male visitors telling another, that 'she's a fighter, but now, we don't want her to fight anymore.' A few minutes after this comment was made, she was gone.
I had spoken to one of her relatives and found out that she had had relapses and the cancer had spread all over her body. They couldn't bear to see her suffering and wanted her to let go.
The nurses were called in and the machine (sorry, I don't know what this is called) registered a straight line. That's it. Didn't see any doctor coming in to certify the death. No resuscitation attempt. Nothing. The family was allowed time to grief. After that, two nurses would come and clean the body and change the clothes. Then, two men would appear with a box for the body. They would close all the curtains and by the time the curtains were drawn aside, the body, box and men had all disappeared.
Next, comes the cleaners who cleaned the furniture, surrounding area, changed the bedsheet and pillow case, changed the curtains and the bed is ready for the next patient.
I had found out from a relative of the patient in bed 5, that before I was transferred to bed 2 in the afternoon, they had cleared out a body from bed 2 that very morning. They hadn't told me earlier as they didn't want to frighten me. Should I be afraid? Well, after witnessing the first death, and after being told that death is like an everyday affair in the onco ward, I pretty much concluded that an onco patient had not much of a choice. Just accept the fact that even the bedsheets and pyjamas had used by a patient who died, then sent for washing, dried and circulated.
In my 11-day stay there, I witnessed a total of 4 deaths in my room. One was an old lady who choked to death. She'd been trying to throw up in the past few days, but the doc only ordered an x-ray later. On the day she died, the doc and nurses were there trying to clear the choke, when the light started flashing. That was the only time, we saw nurses rushing into the room. It was all in vain. They removed a bottle that contained a black round stuff the size of a fishball.
The other 2 deaths were just waiting for time, i.e., brought in at night with family members sniffing away, and then passed on the next morning. Over time, you sort of would be able to tell which ones are just sick and which ones are waiting for time.
Oh, this reminds me. I want to tell my family members that if I ever reach this stage, I don't want to be sent to the onco ward to wait for my time. I want to be brought home and they can start on the preparations without disturbing the other patients.
Fortunately, most of the deaths in my room happened in the earlier part of the day and not in the evenings when people were most likely to visit. I know at least one of my friends would freak out if she were to encounter this and I didn't want her to visit me.
There was once a patient in the next room died. The remaining patients and whatever furniture that could be moved were moved to the corridor. We found that the the room had to be dis-infected. I happened to be coming back from the toilet, when I saw a curtain sailed over through the opening in the wall. I went to a nurse who happened to be near our door and told her about it. She marched straight over and the offending curtain disappeared from view.
For most of the patients in the onco ward, our immunities are low and we are more likely to catch viruses and germs from others.
Once, a patient was transferred to our room and her family members followed, all dressed in protective garbs and masks. Stuff like this is enough to make you want to run away from the ward. Fortunately, a short while later, she was moved to an isolation ward. Apparently there were complaints from patients and family members in the ward that she was transferred from.
I kept my mind occupied by meditating. Sometimes, my mind idled and I started wondering who's next. The more serious ones were on oxygen and I was on oxygen too. When that happened, I would force myself to change my train of thoughts and turned to meditation.
Somehow, we normally didn't discussed the deaths in front of newcomers. Only when they had witnessed and if they were ready to talk, then we asked if they were affected.
Sounds depressing, but that's life in the onco ward.
Wednesday, 6 August 2008
I Can't Breathe
My cough was getting and I guessed the fluid must have built up pretty quickly in my lungs. I was also labouring with my breathing.
14 Feb 08 - 2 of my friends from my pre-U days, J and G, visited. They were worried and concerned when they saw my condition. Said I was in no condition to be left alone at home and insisted that I should get myself warded. G, who is a homemaker, volunteered to send me to the hospital if necessary.
I assured them that I was monitoring my condition, and anyway, after my discharge from Changi, I had also made an appointment with my medical oncologist, Dr Wong, for 18 Feb.
That night, as I lie down, I realised that I was really having problems with my breathing. But I had relief when I switched on the negative ionizer that my cousin J had lent to me.
15 Feb 08 - I awoke at about 7 or 8 am. My son was in the army and was only home in the weekends. Recently, my husband had taken over the preparation of breakfast for the girls, and they were then in school. My husband had gone to work.
The moment I got up and switched off the negative ionizer, I could not breathe. Strangely and probably by instinct, I did not panicked. Instead, I did everything in slow motion. I moved to open the window, but that didn't help. Next, I made my way to the living room, switched on the ceiling fan, opened the sliding doors to the balcony, and sat down on the sofa. With the ceiling fan on, I slowly felt slightly better.
After I rested a while, I went to wash up. All the time, I had been deliberating if I should go to the hospital then or wait until Monday for my appointment. Even though I was moving slowly, I realised that I couldn't make it through the day in that condition.
I called my eldest brother, who was then staying with my mum, and told him I couldn't breathe and I needed to go to hospital. My brother said he would come over and accompany me there. I called my girlfriend, G, and told her I needed her help. I helped myself to some breakfast and packed some of my stuff. I had also packed my Carnivora medicine and the herbal paste from my herbal master. I had brought these along too when I was warded in Changi and had taken them everyday throughout my stay there.
G fetched me to A & E at SGH and my brother stayed to help me with the admission. After I was checked, I was quickly put on oxygen.
It was a long wait for a bed, and I was getting hungry and needed the toilet. I told a nurse and he moved me to the progress ward and gave me a late lunch.
It was a few hours later before a bed was available for me in ward 53. I was told this was only temporary and that I would be moved to the oncology ward as soon as a bed was available.
At ward 53, I was put on drip as well as on oxygen. I had my dinner and spent one night here.
I had my blood tests as well as a heart function (MUGA- Multiple Gated Acquisition scan) test done. Before the scan, two liquids (I think they called it a stain), were injected into the blood stream at 20 minutes interval.
My cancer marker had shot up from 69.3 on 4 Dec 07 to 309 now.
14 Feb 08 - 2 of my friends from my pre-U days, J and G, visited. They were worried and concerned when they saw my condition. Said I was in no condition to be left alone at home and insisted that I should get myself warded. G, who is a homemaker, volunteered to send me to the hospital if necessary.
I assured them that I was monitoring my condition, and anyway, after my discharge from Changi, I had also made an appointment with my medical oncologist, Dr Wong, for 18 Feb.
That night, as I lie down, I realised that I was really having problems with my breathing. But I had relief when I switched on the negative ionizer that my cousin J had lent to me.
15 Feb 08 - I awoke at about 7 or 8 am. My son was in the army and was only home in the weekends. Recently, my husband had taken over the preparation of breakfast for the girls, and they were then in school. My husband had gone to work.
The moment I got up and switched off the negative ionizer, I could not breathe. Strangely and probably by instinct, I did not panicked. Instead, I did everything in slow motion. I moved to open the window, but that didn't help. Next, I made my way to the living room, switched on the ceiling fan, opened the sliding doors to the balcony, and sat down on the sofa. With the ceiling fan on, I slowly felt slightly better.
After I rested a while, I went to wash up. All the time, I had been deliberating if I should go to the hospital then or wait until Monday for my appointment. Even though I was moving slowly, I realised that I couldn't make it through the day in that condition.
I called my eldest brother, who was then staying with my mum, and told him I couldn't breathe and I needed to go to hospital. My brother said he would come over and accompany me there. I called my girlfriend, G, and told her I needed her help. I helped myself to some breakfast and packed some of my stuff. I had also packed my Carnivora medicine and the herbal paste from my herbal master. I had brought these along too when I was warded in Changi and had taken them everyday throughout my stay there.
G fetched me to A & E at SGH and my brother stayed to help me with the admission. After I was checked, I was quickly put on oxygen.
It was a long wait for a bed, and I was getting hungry and needed the toilet. I told a nurse and he moved me to the progress ward and gave me a late lunch.
It was a few hours later before a bed was available for me in ward 53. I was told this was only temporary and that I would be moved to the oncology ward as soon as a bed was available.
At ward 53, I was put on drip as well as on oxygen. I had my dinner and spent one night here.
I had my blood tests as well as a heart function (MUGA- Multiple Gated Acquisition scan) test done. Before the scan, two liquids (I think they called it a stain), were injected into the blood stream at 20 minutes interval.
My cancer marker had shot up from 69.3 on 4 Dec 07 to 309 now.
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