BK and I were once colleagues more than 20 years ago.
She was diagnosed with advanced stage lung cancer in the beginning of 2011. She had been coughing for sometime and finally felt pain in the legs before she found out that she had cancer.
When I learnt of her condition in Mar 2011, she was seeing Dr A, an oncologist in private practice, and was already undergoing chemotherapy. I had suggested taking traditional medicine to protect her organs and boost her immune system, but she was not willing as she was seeing a traditional chinese medical practitioner recommended by Dr A.
About a month or so later, her brother called and asked me to visit and talked to her.
When I saw her, she was all skin and bones, weak and lying in bed and constantly coughing up phlegm. By then, she had already completed her third or fourth dose of chemotherapy. BK's height was slightly more than 5 feet, and she had all along been on the thin side. But her weight then was only 26 kg or so (50+ lbs).
I was shocked to see her in that condition. I learnt that the traditional chinese medical practitioner recommended by her onco was only giving her medication according to her onco's instructions, instead of treating her according to her condition.
I had suggested that she postponed her next dose of chemotherapy and take traditional medicine to boost her immune system. She finally agreed. She was in a wheelchair when she next saw her oncologist. Dr A did not believe that BK could not walk on her own. She was also asked to pay in advance for her next dose of chemotherapy (which was about S$7000).
When the ayurveda master saw her, he commented that she was too far gone but he would try anyway.
BK was on the herbal brews for more than a month and initially showed some improvement. Unfortunately, she succumbed and passed away on 23 June 2011, slightly less than 6 months after she was first diagnosed.
Her oncologist refunded the money to her family.
Showing posts with label warriors against cancer. Show all posts
Showing posts with label warriors against cancer. Show all posts
Thursday, 30 June 2011
Friday, 31 December 2010
MT
MT was a breast cancer patient who had battled cancer for some years and had gone through several rounds of chemo. If I am not mistaken, she also had a couple of surgeries to insert plates to support her spinal column as the cancer had spread there.
When M first introduced her about 2 years ago, she still looked good despite having gone through so much chemo.
Some time after that, she called to ask about alternative medicine. She had been so conditioned by the doctors against taking traditional medicine while undergoing chemo that she found it hard to accept that I had done exactly that. She was concerned about side-effects and contraindications. I explained that I had none and that the only side-effects I had were from chemo which were confirmed by the doctor. Still, she was not convinced.
One day, she told me that the doctors have told her they have run out of drugs for her, that there is nothing else they could do. She sounded shocked and could not believe that there was such a thing as running out of drugs to treat her cancer. She told me she was going for a second opinion.
MT last called me sometime before she passed on. She was in great distress. She realized how wrong she was to have listened to her doctors about alternative medicine. She said she should have gone for alternative treatment much earlier.
When M first introduced her about 2 years ago, she still looked good despite having gone through so much chemo.
Some time after that, she called to ask about alternative medicine. She had been so conditioned by the doctors against taking traditional medicine while undergoing chemo that she found it hard to accept that I had done exactly that. She was concerned about side-effects and contraindications. I explained that I had none and that the only side-effects I had were from chemo which were confirmed by the doctor. Still, she was not convinced.
One day, she told me that the doctors have told her they have run out of drugs for her, that there is nothing else they could do. She sounded shocked and could not believe that there was such a thing as running out of drugs to treat her cancer. She told me she was going for a second opinion.
MT last called me sometime before she passed on. She was in great distress. She realized how wrong she was to have listened to her doctors about alternative medicine. She said she should have gone for alternative treatment much earlier.
Thursday, 22 April 2010
E, NPC patient's final journey
The following article appeared in a January 2010 edition of The New Paper :
Just 5 minutes on stage gave him strength to fight cancer
Student endures to fulfil dream of performing solo in concert
Egan Supharta Mercubuwono has only one thing on his New Year's to-do list: Live. Last Sunday, he realised his dream of playing a solo piece on his flute before a packed audience at the Victoria Concert Hall. Now, he wants merely to make it to school when it reopens on Monday. Unlike most others, Egan will have to take it one day at a time this year. The reason: The Yuying Secondary School student was diagnosed with stage three nose cancer in September. At the concert, with eyes shut in deep concentration, Egan's fingers danced over his instrument at his school's annual concert. "It is very painful to play the flute as my neck aches," said Egan. "I get headaches. "But when I play, it takes the pain away from my mind. It helps me forget my problems."
This article was written by Hedy Khoo and appeared in The New Paper of 20 Apr 2010 (I could not upload the article and am reproducing it here.):
He lived his life to the fullest : Mum
Flutist student who pledged to live through the year dies of cancer
He made a New Year resolution that he was going to live through the year. But that was not to be.
Despite his determination to win his battle against nose cancer, 16-year-old Egan Supharta Mercubuwono succumbed to the disease on Sunday.
The New Paper had published a report on the Yuying Secondary School student on Jan 1 this year for his performance of a flute solo during a school band concert at the Victoria Concert Hall.
He did that even though he was undergoing treatment for stage three nose cancer, which he was diagnosed with last September.
Speaking to The New Paper at his wake yesterday, his mother. Madam Khanti Mercubuwono, 42, an accounts assistant, said: "Even though my son's life was very short, he lived it to the fullest and refused to give up even in the face of death."
Egan's parents had teken him to Malacca on April 11 to seek treatment.
Said Madam Mercubuwono: "He had not been feeling well. Two days ago, on Sunday afternoon, we decided to bring him back to Singapore, but he passed away in the ambulance on the way back."
Madam Mercubuwono said the family held a simple Christian prayer ceremony on Sunday evening.
She said they will be leavingtoday for Jakarta for the burial.
His family moved there from Jakarta in 2006 as his mother wanted him to study here.
Almost a hundred of his schoolmates from Yuying Secondary School turned up in the pouring rain yesterday afternoon to bid a last farewell to him at the funeral parlour at Sin Ming Drive.
Among hem were members of the school band, of which Egan had been the drum major.
Many cried as they paid their last respects at his casket. But there were also smiles as they recalled their fond memories of Egan.
A close firend, Tan Guan Shin, 15, said that his friend, who could draw and learnt to play the guitar on his own, had wanted to be an artist or musician.
Recalling their last time together two weeks ago, he said: "The whole band visited him at his home. We had an assessment performance the next day at the Singapore Youth Festival.
"He made us promise him to get a distinction grade. I am glad we managed to live up to our promise."
He cheered us up
The youth added that he also admired Egan for his positive attitude.
He added: "He even cheered us up with jokes. He never once complained about his illness."
True to form, in his last Facebook status updates on March 30, Egan had written: "Impossible is nothing."
Other schoolmates considered Egan a natural leader and livewire.
Said close friend Amanda Ang, 15: "Everyone wanted to be friends with him. We liked him because he loved to joke. But we also respected him as a leader."
He was mischievous too, said schoolmate Kelly Wong, 15.
"He liked to stick his leg out and cause us to trip, but we never could get angry with him because he would win us over with his smile," she said.
Among their fondest memories of him was during a class in January.
Recalled Jasmine Koh, 16: " We each had to introduce ourselves to our new English teacher by saying our name and our CCA.
"When it was Egan's turn, he said, 'My name is Egan and I am a cancer survivor'."
Madam Mercubuwono said she had not known how popular her son had been at school until he became sick with cancer.
Touched by the many schoolmates who visited him throughout his illness, she said: "It was everyone's encouragement which gave us the strength."
Her son's death will be hard to take as he always made the home lively with his chats and laughter.
She added: "He taught me what strength is and to cherish life.
"I hope that anyone who has to battle with cancer will have his same spirit, to never give up - until the very end."
18 Apr, Sun, 9.30pm - Sms from K forwarded to me by WC : "He is much better now. No more pain. He is in Father's house. Happy. Thanks for helping him."
I was still staring at the sms and thinking, 'does this mean that he is gone', and yet at the same time half-hoping that I had got it wrong, when WC called. She shared my thoughts about the sms. We decided that WC should contact K.
WC called me again. It had been confirmed. He was gone, passed away in the ambulance while on the way back to Singapore.
E's family arranged for a one day wake in Singapore for friends and schoolmates to say their 'goodbyes' before they brought him home to Jakarta for burial.
WC, 2 CSX volunteers and myself went to his wake on Monday, 19 Apr.
From his mum, we learnt that he had been warded in a Malacca hospital for 3 days where he had blood transfusion. KKH had earlier refused to give him further blood transfusion and Gleneagles had said there was no necessity for one.
On Sunday, 18 Apr, his parents were bringing him back to Singapore, but he passed away sometime after the departure from Malacca and before they even reached the Causeway.
We also learnt that it was the same friend who had reccommended the bio-...(?) treatment to him on Thursday, 15 Apr, and who had brought him and his parents to Malacca for TCM treatment on Sunday, 11 Apr. E had stayed in Malacca for 1 week, and we had no idea who the TCM was, his address as K had depended on this friend to lead the way. Neither do we know what sort of treatment he gave to E.
From what we undersood, this friend was one that K and E had met recently while at a hospital.
She might have meant well with her intentions to help E recover, but one must remember that there is a limit to how far one can go or how much one can do to help a cancer patient, especially one in E's condition, which was very advanced and had metastasized to the bones.
Just 5 minutes on stage gave him strength to fight cancer
Student endures to fulfil dream of performing solo in concert
Egan Supharta Mercubuwono has only one thing on his New Year's to-do list: Live. Last Sunday, he realised his dream of playing a solo piece on his flute before a packed audience at the Victoria Concert Hall. Now, he wants merely to make it to school when it reopens on Monday. Unlike most others, Egan will have to take it one day at a time this year. The reason: The Yuying Secondary School student was diagnosed with stage three nose cancer in September. At the concert, with eyes shut in deep concentration, Egan's fingers danced over his instrument at his school's annual concert. "It is very painful to play the flute as my neck aches," said Egan. "I get headaches. "But when I play, it takes the pain away from my mind. It helps me forget my problems."
This article was written by Hedy Khoo and appeared in The New Paper of 20 Apr 2010 (I could not upload the article and am reproducing it here.):
He lived his life to the fullest : Mum
Flutist student who pledged to live through the year dies of cancer
He made a New Year resolution that he was going to live through the year. But that was not to be.
Despite his determination to win his battle against nose cancer, 16-year-old Egan Supharta Mercubuwono succumbed to the disease on Sunday.
The New Paper had published a report on the Yuying Secondary School student on Jan 1 this year for his performance of a flute solo during a school band concert at the Victoria Concert Hall.
He did that even though he was undergoing treatment for stage three nose cancer, which he was diagnosed with last September.
Speaking to The New Paper at his wake yesterday, his mother. Madam Khanti Mercubuwono, 42, an accounts assistant, said: "Even though my son's life was very short, he lived it to the fullest and refused to give up even in the face of death."
Egan's parents had teken him to Malacca on April 11 to seek treatment.
Said Madam Mercubuwono: "He had not been feeling well. Two days ago, on Sunday afternoon, we decided to bring him back to Singapore, but he passed away in the ambulance on the way back."
Madam Mercubuwono said the family held a simple Christian prayer ceremony on Sunday evening.
She said they will be leavingtoday for Jakarta for the burial.
His family moved there from Jakarta in 2006 as his mother wanted him to study here.
Almost a hundred of his schoolmates from Yuying Secondary School turned up in the pouring rain yesterday afternoon to bid a last farewell to him at the funeral parlour at Sin Ming Drive.
Among hem were members of the school band, of which Egan had been the drum major.
Many cried as they paid their last respects at his casket. But there were also smiles as they recalled their fond memories of Egan.
A close firend, Tan Guan Shin, 15, said that his friend, who could draw and learnt to play the guitar on his own, had wanted to be an artist or musician.
Recalling their last time together two weeks ago, he said: "The whole band visited him at his home. We had an assessment performance the next day at the Singapore Youth Festival.
"He made us promise him to get a distinction grade. I am glad we managed to live up to our promise."
He cheered us up
The youth added that he also admired Egan for his positive attitude.
He added: "He even cheered us up with jokes. He never once complained about his illness."
True to form, in his last Facebook status updates on March 30, Egan had written: "Impossible is nothing."
Other schoolmates considered Egan a natural leader and livewire.
Said close friend Amanda Ang, 15: "Everyone wanted to be friends with him. We liked him because he loved to joke. But we also respected him as a leader."
He was mischievous too, said schoolmate Kelly Wong, 15.
"He liked to stick his leg out and cause us to trip, but we never could get angry with him because he would win us over with his smile," she said.
Among their fondest memories of him was during a class in January.
Recalled Jasmine Koh, 16: " We each had to introduce ourselves to our new English teacher by saying our name and our CCA.
"When it was Egan's turn, he said, 'My name is Egan and I am a cancer survivor'."
Madam Mercubuwono said she had not known how popular her son had been at school until he became sick with cancer.
Touched by the many schoolmates who visited him throughout his illness, she said: "It was everyone's encouragement which gave us the strength."
Her son's death will be hard to take as he always made the home lively with his chats and laughter.
She added: "He taught me what strength is and to cherish life.
"I hope that anyone who has to battle with cancer will have his same spirit, to never give up - until the very end."
18 Apr, Sun, 9.30pm - Sms from K forwarded to me by WC : "He is much better now. No more pain. He is in Father's house. Happy. Thanks for helping him."
I was still staring at the sms and thinking, 'does this mean that he is gone', and yet at the same time half-hoping that I had got it wrong, when WC called. She shared my thoughts about the sms. We decided that WC should contact K.
WC called me again. It had been confirmed. He was gone, passed away in the ambulance while on the way back to Singapore.
E's family arranged for a one day wake in Singapore for friends and schoolmates to say their 'goodbyes' before they brought him home to Jakarta for burial.
WC, 2 CSX volunteers and myself went to his wake on Monday, 19 Apr.
From his mum, we learnt that he had been warded in a Malacca hospital for 3 days where he had blood transfusion. KKH had earlier refused to give him further blood transfusion and Gleneagles had said there was no necessity for one.
On Sunday, 18 Apr, his parents were bringing him back to Singapore, but he passed away sometime after the departure from Malacca and before they even reached the Causeway.
We also learnt that it was the same friend who had reccommended the bio-...(?) treatment to him on Thursday, 15 Apr, and who had brought him and his parents to Malacca for TCM treatment on Sunday, 11 Apr. E had stayed in Malacca for 1 week, and we had no idea who the TCM was, his address as K had depended on this friend to lead the way. Neither do we know what sort of treatment he gave to E.
From what we undersood, this friend was one that K and E had met recently while at a hospital.
She might have meant well with her intentions to help E recover, but one must remember that there is a limit to how far one can go or how much one can do to help a cancer patient, especially one in E's condition, which was very advanced and had metastasized to the bones.
Saturday, 17 April 2010
Helping E, NPC patient (continued)
I include here, in chronological order, E's condition from 4 to 13 April as reported by volunteers from CSX (Chang Shen Xue - 长生学) and WC, an NPC support group member.
Apr 4, Sun - Sms from WC : E is in pain. K thinks he can’t go in a taxi.
(Note : I had actually planned for E to receive chakra healing therapy at Kim Mui Huay Kuan from 4 to 8 April, 5 continuous days of therapy, as our teachers would be present. I had felt that with many years of experience each, it would be a good opportunity for E to make progress.)
After much persuasion from WC, K (E's mum) agreed to bring him for chakra adjustment therapy.
Apr 6, Tue -
4 CSX teachers from Taiwan + a couple of volunteers
Mr W, our principal teacher, gave him therapy as well while he was being transferred to the ambulance to be sent home.
More than an hour of chakra adjustment therapy
K brought E to Kim Mui Huay Kuan where CSX was conducting training for new students.
E was in a lot of pain and we had much trouble transferring him from the front passenger seat of the taxi to his wheelchair.
His skin had a tinge of yellow as compared to 24 Mar when he was at Gleneagles. He also had red spots on his head (rashes-?).
K mentioned that E started having fever in the morning.
E had to be treated while seated on his wheelchair.
2 CSX teachers from Taiwan attended to him.
Initially, E was very uncomfortable and kept asking to be sent home. 2 more CSX teachers from Taiwan were requested to attend to him and they were joined by a couple of CSX volunteers.
His condition stabilised and he fell asleep on the wheelchair. After more than an hour of therapy, he was sent home by ambulance.
Sms from WC : K said doc gave E 2 weeks.
Apr 7, Wed -
CSX volunteers : 3
About 2 hours of chakra adjustment therapy
They reported that he was fine.
Sms fr WC : TCM Dr Long saw E. Said E has a clear mind, his heart and lungs are good, so he still has a chance.
Sms fr WC : E sat on wheelchair. He could carry a packet of ensure milk in his hands and drink.
Sms fr WC : E wants to do chakra adjustment therapy although he could not explain why. Said his fever was brought down by chakra adjustment.
Apr 8, Thu -
CSX volunteers : 2 in the morning and 2 in the afternoon
About 2 hours of chakra adjustment therapy in the morning and more than 1 hour in the afternoon.
When the volunteers arrived in the morning, E was already seated on the wheelchair, and fed himself breakfast at the table. He could wheel himself around on his wheelchair.
Chakra adjustment therapy was done on him while he was on the wheelchair and he kept dozing off. After about an hour on the wheelchair, he awoke and requested to be transferred to bed, where he soon fell asleep while the therapy progressed.
The therapy session was about to be wrapped up when one of E's family friends came and K told the volunteers that they were bringing E for some bio-----(?) treatment.
E was fine throughout and did not complain of pain.
The afternoon volunteers said E reached home after 3pm. They did chakra adjustment for him while he was lying in bed and did not notice anything unusual about him.
Sms fr WC : E is in good spirits today.
Apr 9, Fri -
CSX volunteers : 2 started at 9.30am and were to be relieved by another pair at 11am.
The first pair started at 9.30am and the second pair was requested to go over earlier at 10+am. The whole team continued till about 12+.
When the first pair arrived, E was lying in bed and did not seem to be in good spirits.
He had a big red patch on his left hip.
Throughout, he could not fall into deep sleep and constantly complained of pain on his right ribcage and especially on his right lower leg and sole of his right foot. K switched on the aircon as E was perspiring and also she was concerned about the red spots on his head.
The second pair was scheduled to take over at about 11am, but had been requested to go over earlier to help with the other chakra points, spinal column and vital organ as E was in a lot of pain and the first pair had to help E manage his pain.
E’s pain was so intense that he even felt the pain when the energy flowed through him during the chakra adjustment. Also, his heart was racing and he was breathless.
The volunteers stopped at his request, and he was really down.
He had not complained of pain the day before, and he said that the pain was very mild the day before, but it was very severe then, about the same level as on 6 Apr.
He said it was because of the wheelchair, probably meaning the transfer between wheelchair and car. K requested for break from chakra adjustment therapy on Saturday and Sunday.
Sms fr WC : E is ok and in good spirits. He has settled down. He knew the pain is due to moving him on Thursday. Rash on head subsided.
Sms fr K : E is ok now, but still in pain.
K had requested for a break from chakra adjustment therapy for Saturday and Sunday.
Apr 11, Sun -
Sms fr K fwded by WC : K had brought E to Malacca today for TCM treatment as she said that E was in a lot of pain these past few days, and didn’t really want to eat.
Apr 13, Tue
Sms fr K : E’s pain has improved slightly and he does not need much pain killer. However, his red blood cell and platelet count is still quite low.
I understood that he had gone for blood transfusion while in Malacca.
Reflection :
Here are some of my thoughts on E's case.
1. As a cancer patient myself, I must admit that I failed to comprehend the magnitude of E's pain. As I was not with E all the time, I had to depend on K to provide me with updated and detailed information of his condition. However, I understand K's desperation and state of stress and confusion her mind is in, so it would be reasonable to assume that K may not have been able to convey the necessary information concerning his mobility and transfers in relation to his pain level.
2. It did not occur to me then, that the coordinator might have a list of volunteers that we could call on for help. It was a coincidence that the coordinator was also involved in organising the April 3 - 8 training class as well as helping young cancer patients in KKH. Initially, there was not enough volunteers to provide E with daily therapy.
With my limited information and resources, I had then requested K to bring E down to the adjustment centre in Kg Senang on 31 Mar, Wednesday, and subsequently to the training centre at Kim Mui Huay Kuan on 4 - 8 April. This request was made as I felt E would have a better chance where we have more experienced volunteers at Kg Senang, and at the training centre, where our teachers are available. I had also hope that E could have received 5 straight days of therapy from the teachers which would be a great benefit to him. For transportation, I had obtained information on a private ambulance that provided 2-way transfer at a very reasonable rate.
However, K only managed to bring E down on 6 April after much persuasion from WC. Now, I realised that it could be K knew it would not be easy to move E by car, but she did not specifically mention this problem to me. In fact, she told me that E could sit in a car with the seat reclined.
Nevertheless, even with whatever information and resources I had then, I felt and still feel that WC and I have done our best, especially WC, and that whatever decisions we have made or course of action we have chosen, they were deemed to be the best at that time and taken with E's interest at heart.
From E's case, every obstacle we came across and every step we took is knowledge and experience gained.
Apr 4, Sun - Sms from WC : E is in pain. K thinks he can’t go in a taxi.
(Note : I had actually planned for E to receive chakra healing therapy at Kim Mui Huay Kuan from 4 to 8 April, 5 continuous days of therapy, as our teachers would be present. I had felt that with many years of experience each, it would be a good opportunity for E to make progress.)
After much persuasion from WC, K (E's mum) agreed to bring him for chakra adjustment therapy.
Apr 6, Tue -
4 CSX teachers from Taiwan + a couple of volunteers
Mr W, our principal teacher, gave him therapy as well while he was being transferred to the ambulance to be sent home.
More than an hour of chakra adjustment therapy
K brought E to Kim Mui Huay Kuan where CSX was conducting training for new students.
E was in a lot of pain and we had much trouble transferring him from the front passenger seat of the taxi to his wheelchair.
His skin had a tinge of yellow as compared to 24 Mar when he was at Gleneagles. He also had red spots on his head (rashes-?).
K mentioned that E started having fever in the morning.
E had to be treated while seated on his wheelchair.
2 CSX teachers from Taiwan attended to him.
Initially, E was very uncomfortable and kept asking to be sent home. 2 more CSX teachers from Taiwan were requested to attend to him and they were joined by a couple of CSX volunteers.
His condition stabilised and he fell asleep on the wheelchair. After more than an hour of therapy, he was sent home by ambulance.
Sms from WC : K said doc gave E 2 weeks.
Apr 7, Wed -
CSX volunteers : 3
About 2 hours of chakra adjustment therapy
They reported that he was fine.
Sms fr WC : TCM Dr Long saw E. Said E has a clear mind, his heart and lungs are good, so he still has a chance.
Sms fr WC : E sat on wheelchair. He could carry a packet of ensure milk in his hands and drink.
Sms fr WC : E wants to do chakra adjustment therapy although he could not explain why. Said his fever was brought down by chakra adjustment.
Apr 8, Thu -
CSX volunteers : 2 in the morning and 2 in the afternoon
About 2 hours of chakra adjustment therapy in the morning and more than 1 hour in the afternoon.
When the volunteers arrived in the morning, E was already seated on the wheelchair, and fed himself breakfast at the table. He could wheel himself around on his wheelchair.
Chakra adjustment therapy was done on him while he was on the wheelchair and he kept dozing off. After about an hour on the wheelchair, he awoke and requested to be transferred to bed, where he soon fell asleep while the therapy progressed.
The therapy session was about to be wrapped up when one of E's family friends came and K told the volunteers that they were bringing E for some bio-----(?) treatment.
E was fine throughout and did not complain of pain.
The afternoon volunteers said E reached home after 3pm. They did chakra adjustment for him while he was lying in bed and did not notice anything unusual about him.
Sms fr WC : E is in good spirits today.
Apr 9, Fri -
CSX volunteers : 2 started at 9.30am and were to be relieved by another pair at 11am.
The first pair started at 9.30am and the second pair was requested to go over earlier at 10+am. The whole team continued till about 12+.
When the first pair arrived, E was lying in bed and did not seem to be in good spirits.
He had a big red patch on his left hip.
Throughout, he could not fall into deep sleep and constantly complained of pain on his right ribcage and especially on his right lower leg and sole of his right foot. K switched on the aircon as E was perspiring and also she was concerned about the red spots on his head.
The second pair was scheduled to take over at about 11am, but had been requested to go over earlier to help with the other chakra points, spinal column and vital organ as E was in a lot of pain and the first pair had to help E manage his pain.
E’s pain was so intense that he even felt the pain when the energy flowed through him during the chakra adjustment. Also, his heart was racing and he was breathless.
The volunteers stopped at his request, and he was really down.
He had not complained of pain the day before, and he said that the pain was very mild the day before, but it was very severe then, about the same level as on 6 Apr.
He said it was because of the wheelchair, probably meaning the transfer between wheelchair and car. K requested for break from chakra adjustment therapy on Saturday and Sunday.
Sms fr WC : E is ok and in good spirits. He has settled down. He knew the pain is due to moving him on Thursday. Rash on head subsided.
Sms fr K : E is ok now, but still in pain.
K had requested for a break from chakra adjustment therapy for Saturday and Sunday.
Apr 11, Sun -
Sms fr K fwded by WC : K had brought E to Malacca today for TCM treatment as she said that E was in a lot of pain these past few days, and didn’t really want to eat.
Apr 13, Tue
Sms fr K : E’s pain has improved slightly and he does not need much pain killer. However, his red blood cell and platelet count is still quite low.
I understood that he had gone for blood transfusion while in Malacca.
Reflection :
Here are some of my thoughts on E's case.
1. As a cancer patient myself, I must admit that I failed to comprehend the magnitude of E's pain. As I was not with E all the time, I had to depend on K to provide me with updated and detailed information of his condition. However, I understand K's desperation and state of stress and confusion her mind is in, so it would be reasonable to assume that K may not have been able to convey the necessary information concerning his mobility and transfers in relation to his pain level.
2. It did not occur to me then, that the coordinator might have a list of volunteers that we could call on for help. It was a coincidence that the coordinator was also involved in organising the April 3 - 8 training class as well as helping young cancer patients in KKH. Initially, there was not enough volunteers to provide E with daily therapy.
With my limited information and resources, I had then requested K to bring E down to the adjustment centre in Kg Senang on 31 Mar, Wednesday, and subsequently to the training centre at Kim Mui Huay Kuan on 4 - 8 April. This request was made as I felt E would have a better chance where we have more experienced volunteers at Kg Senang, and at the training centre, where our teachers are available. I had also hope that E could have received 5 straight days of therapy from the teachers which would be a great benefit to him. For transportation, I had obtained information on a private ambulance that provided 2-way transfer at a very reasonable rate.
However, K only managed to bring E down on 6 April after much persuasion from WC. Now, I realised that it could be K knew it would not be easy to move E by car, but she did not specifically mention this problem to me. In fact, she told me that E could sit in a car with the seat reclined.
Nevertheless, even with whatever information and resources I had then, I felt and still feel that WC and I have done our best, especially WC, and that whatever decisions we have made or course of action we have chosen, they were deemed to be the best at that time and taken with E's interest at heart.
From E's case, every obstacle we came across and every step we took is knowledge and experience gained.
Wednesday, 31 March 2010
Helping E, NPC (nasopharyngeal cancer) patient
E is a 15 year-old (Indonesian Chinese boy) npc patient and the cancer has spread to his bones He was introduced to the NPC support during the Sentosa outing on Mar 23 by LO, the new leader of TRC since HH's passing.
WC is an active member of NOC support group and this is her email on her first visit to see him :
"I saw E on 15 March for the first time. His condition was very bad. He could not move his right side body due to pain on the bones. He was admitted (to Gleneagles Hospital) that night. 16 March, he started on RT on the bones. He was discharged on 26 March. During this period, he was given RT on the NPC to control his nose bleeding."
E's condition according to WC :
WC's email on 22 Mar :
"I visited E, the 15 year old boy in Gleneagle last sat and sun. I made him vege/fruit juice and also potato + cauliflower puree. He ate it. I was so glad. I taught the mother K to make the puree. I make a portion of the vege/fruit juice today, and my colleague will bring it to him when she knocks off at 3. 30 pm."
"E started on radiation on his bones from 16 Mar for 12 times at Gleneagle. He is bedridden and on morphine to control his pain."
"I spoke to K last sat (20Mar). She told me an NPC spread to bone survivor visited E. His name is RS. I was delighted. K showed me the recipe he gave. Almost the same as mine, except that he is more "guru" than me.
"
WC's email on 25 March :
I could not remember whether WC contacted me on Sunday (21 Mar) or Monday (22 Mar), asking if chakra adjustment could help relieve pain. I said it was possible and got in touch with J, volunteer coordinator and a senior, of the chakra adjustment volunteer group, and he went down on Monday to help E.
As of 1st April, if I am not mistaken, E has received at least 5 sessions of chakra adjustment.
E is only 15 and his condition spurred all of us to rally round to help him and his mother with whatever knowledge and experience we have. He is very weak and fragile and very thin and could not sit up for long.
WC and her NPC support group are taking care of his diet and nutrition, and members of the chakra adjustment volunteer group are providing him therapy healing.
We are doing our best to help him in his progress, and are not taking chances and anything that will hamper his progress or that will worsen his condition, we tried our best to remove it. Like telling his father, through his mum that he should not smoke in the house. We also took issue with his bed. That's right fengshui.
His bedhead was facing a window and the other end was facing the door. All I know is that it is an energy-draining position, but my friend said it is a 'coffin' position. So my friend roped in her friend, who has fengshui knowledge for help. His mum has been advised to shift his bed and certain pieces of furniture in the house.
Part of WC's email on 30 Mar :
"K kept asking me, why his condition did not imrpove, despite heeding the doctor's advice. One lady at Gleneagles commented that K delayed the treatment. So K felt so guilty and kept asking me. I could not answer her. But I told her to ignore what that lady said, because she did not know what E has gone thru. K says she will not give up hope. The report just says, progression of spread, to be monitored. I know the agony - the decision making, going thru the pains, and now seeing worse condition, the disappointment, despair, helplessness, etc. I could only console her that there is no absolute right or wrong. We just have to move on. Since the medical option is not working, we will look to food therapy, which I think R can help. The Chakra healing will help to relieve the symptoms and give him some comfort, but she will have to look for some concrete ways to counter the fast growing cancer spread. I offer no solution. I was at a loss. The responsibility is so heavy. I was not sure if I had done the right thing. When I gave her the juice, I let the mother feed him. I was glad to see he can accept my food. I think this is important. I don't dare to feed him in case anything goes wrong. As I went home on sunday night, I also asked myself if I'm doing the right thing. And I felt so stressed up, being so helpless."
When a child becomes so sick, his doctor has rated his case as 'no cure', usually it is the parents, especially the mother, who is suffering more. The decisions she has to make on his behalf, hoping that every single one she made is right, and the overload of information she has to handle are enough to floor anybody. She can only stand by, watching her son suffer, but unable to share in his suffering and pain. It is a parent's nightmare.
With our combined efforts, we hope that E continues to make progress.
Today, 1 Apr, E has gone for a check-up but has to be warded for blood transfusion as his bloodcount was very low.
WC is an active member of NOC support group and this is her email on her first visit to see him :
"I saw E on 15 March for the first time. His condition was very bad. He could not move his right side body due to pain on the bones. He was admitted (to Gleneagles Hospital) that night. 16 March, he started on RT on the bones. He was discharged on 26 March. During this period, he was given RT on the NPC to control his nose bleeding."
E's condition according to WC :
"K (E's mum) showed me E's medical reports last night. E was diagnosed with stage 3 NPC by Dr S in Sep 2009. Because he is a junior, so he had chemo in KK hospital. 4 cycles of chemo, cisplatin + 5FU + 3 other drugs. The report stated tumour remained unchanged after chemo. That means, he did not respond well to chemo. At the end of chemo in Dec, his cancer spread to bone. He was scheduled to start his RT 33 rounds in NCC from 5 Jan. E read about Chemo and RT in the internet and decided to stop treatment after 7 rounds of RT. His mother went along with his wish. She also felt that he should be treated for his bone
cancer spread instead of just doing RT for his NPC."
cancer spread instead of just doing RT for his NPC."
"Having stopped RT and CT, she brought E back to Indonesia and saw TCM who guaranteed her 99% of cure. After one month, there was not much improvement. In Feb 2010, she brought E to Gleneagles Hospital to see Dr KW for a second opinion. The cancer is spreading fast to the bones, and he is having pain. He did chemo."
WC's email on 22 Mar :
"I visited E, the 15 year old boy in Gleneagle last sat and sun. I made him vege/fruit juice and also potato + cauliflower puree. He ate it. I was so glad. I taught the mother K to make the puree. I make a portion of the vege/fruit juice today, and my colleague will bring it to him when she knocks off at 3. 30 pm."
"E started on radiation on his bones from 16 Mar for 12 times at Gleneagle. He is bedridden and on morphine to control his pain."
"I spoke to K last sat (20Mar). She told me an NPC spread to bone survivor visited E. His name is RS. I was delighted. K showed me the recipe he gave. Almost the same as mine, except that he is more "guru" than me.
" I called R on sat night. He was diagnosed in March 2005, stage 1, and hence had RT only. In 2007, he had a relapse, stage 1. As chemo is for stage 2 and above, he was left with the option of surgery, since he could not tahan another round of RT. In 2008, his cancer spread to the bones. Quite a number of location is affected, and doctors pronounced no cure for him. He made the doctor wrote a statement on that. He is now on palliative care. He searched and reflected on the cause of cancer, and decided to change his diet and lifestyle. He is now on oral chemo everyday for life. He is now a volunteer in 365 cancer society. He told me this is founded by Billly Wang. When I checked this with J (CCK), who is also a volunteer there, she said 365 is trying to break clean from Billy Wang, cos the latter started his own group."
"Anyway, R says he is the key person for NPC contact in 365. I asked if he has heard of the NPC support group, he said NO. I asked if he would like to bring his patients to join our support group, he said he would have to refer to his society. I stopped there. I did not want this issue to turn political. We are not trying to grab his patients. We want to keep clean of political and commercial interests. On a gentleman spirit, I invited him to join our support group meeting. He can see for himself if he would like to expose his patients under his care to have more friends.""R sounded enthusiastic to speak to me. I told him I was very happy to know there is a survivor of such case, which doctors have given up hope. He sounded energetic, talking and talking for almost one hour. From what he said, I think he is a sensible counsellor. He calls his remedy - "diet therapy" for cancer patients. Almost the same as what J, and some of us are doing."
WC's email on 25 March :
"Yesterday (24 Mar - Wednesday), I visited E at Gleneagles. His condition improved a lot. He could even turned his body and rest on his right arm! How amazing! He could talk and lift both hands. But he said his hands were weak. I told him to exercise his fingers and hands to regain the energy."
"Last sunday (21 Mar), he was in great pain and could not move his body. He asked, how long is this going to be? When is this going to end? Yes, I asked those same questions 4.5 years ago."
"I could only help in his diet, but not his pain."
"I could not remember whether it was sunday night or monday. I flipped the newspaper or magazine, and the words "chakra healing" flashed across. I thought of (a friend) and immediately I asked for her help. She conveyed to her senior, J and eventually, somebody (J himself) from her chakra healing group went to help E. K was so grateful. That was monday."
I could not remember whether WC contacted me on Sunday (21 Mar) or Monday (22 Mar), asking if chakra adjustment could help relieve pain. I said it was possible and got in touch with J, volunteer coordinator and a senior, of the chakra adjustment volunteer group, and he went down on Monday to help E.
As of 1st April, if I am not mistaken, E has received at least 5 sessions of chakra adjustment.
E is only 15 and his condition spurred all of us to rally round to help him and his mother with whatever knowledge and experience we have. He is very weak and fragile and very thin and could not sit up for long.
WC and her NPC support group are taking care of his diet and nutrition, and members of the chakra adjustment volunteer group are providing him therapy healing.
We are doing our best to help him in his progress, and are not taking chances and anything that will hamper his progress or that will worsen his condition, we tried our best to remove it. Like telling his father, through his mum that he should not smoke in the house. We also took issue with his bed. That's right fengshui.
His bedhead was facing a window and the other end was facing the door. All I know is that it is an energy-draining position, but my friend said it is a 'coffin' position. So my friend roped in her friend, who has fengshui knowledge for help. His mum has been advised to shift his bed and certain pieces of furniture in the house.
Part of WC's email on 30 Mar :
"K kept asking me, why his condition did not imrpove, despite heeding the doctor's advice. One lady at Gleneagles commented that K delayed the treatment. So K felt so guilty and kept asking me. I could not answer her. But I told her to ignore what that lady said, because she did not know what E has gone thru. K says she will not give up hope. The report just says, progression of spread, to be monitored. I know the agony - the decision making, going thru the pains, and now seeing worse condition, the disappointment, despair, helplessness, etc. I could only console her that there is no absolute right or wrong. We just have to move on. Since the medical option is not working, we will look to food therapy, which I think R can help. The Chakra healing will help to relieve the symptoms and give him some comfort, but she will have to look for some concrete ways to counter the fast growing cancer spread. I offer no solution. I was at a loss. The responsibility is so heavy. I was not sure if I had done the right thing. When I gave her the juice, I let the mother feed him. I was glad to see he can accept my food. I think this is important. I don't dare to feed him in case anything goes wrong. As I went home on sunday night, I also asked myself if I'm doing the right thing. And I felt so stressed up, being so helpless."
When a child becomes so sick, his doctor has rated his case as 'no cure', usually it is the parents, especially the mother, who is suffering more. The decisions she has to make on his behalf, hoping that every single one she made is right, and the overload of information she has to handle are enough to floor anybody. She can only stand by, watching her son suffer, but unable to share in his suffering and pain. It is a parent's nightmare.
With our combined efforts, we hope that E continues to make progress.
Today, 1 Apr, E has gone for a check-up but has to be warded for blood transfusion as his bloodcount was very low.
Thursday, 25 February 2010
Another fallen warrior - SH
A cousin introduced me to SH, her ex-colleague, when SH and I had our relapses. She was also a breast cancer patient, about my age, and her two kids are younger than mine.
SH was about a year into Tamoxifen when she found out that the cancer had spread to her bones. My cousin had introduced her to ayurvedic herbal medicine, but SH preferred to stick to conventional therapies instead. I understood she had also gone for qigong.
I had met her a few times at the National Cancer Centre when I went for my appointments but had not seen her for the last few months.
My cousin informed me that SH had passed away on 21 Feb, Sunday. Her liver had failed.
I don't know how far her cancer had spread, and I don't know how much chemo she had received, all I know is that she had been fighting the relapse ever since, and it has been more than two years.
Would SH have fared better if she had opted for alternative medicine instead? I wonder.
SH was about a year into Tamoxifen when she found out that the cancer had spread to her bones. My cousin had introduced her to ayurvedic herbal medicine, but SH preferred to stick to conventional therapies instead. I understood she had also gone for qigong.
I had met her a few times at the National Cancer Centre when I went for my appointments but had not seen her for the last few months.
My cousin informed me that SH had passed away on 21 Feb, Sunday. Her liver had failed.
I don't know how far her cancer had spread, and I don't know how much chemo she had received, all I know is that she had been fighting the relapse ever since, and it has been more than two years.
Would SH have fared better if she had opted for alternative medicine instead? I wonder.
Monday, 25 January 2010
Blood test before check-up on 25 Jan 2010
I usually go for my blood test a couple of days before my appointment with my oncologist as the test for the cancer marker takes half a day before the results are known, and I always want a copy of my blood test results.
It was no different this time round. I went for my blood test on 21 Jan as I also wanted to meet up with AJ at NCC.
AJ was there for blood transfusion as her haemoglobin count was low. She was told that sometimes this situation happens after chemo, and I am not sure if it was also due to her prolonged intake of oral chemo.
AJ needed 2 pints of blood, and the transfusion lasted 6 hours.
It was no different this time round. I went for my blood test on 21 Jan as I also wanted to meet up with AJ at NCC.
AJ was there for blood transfusion as her haemoglobin count was low. She was told that sometimes this situation happens after chemo, and I am not sure if it was also due to her prolonged intake of oral chemo.
AJ needed 2 pints of blood, and the transfusion lasted 6 hours.
Thursday, 22 October 2009
RIP J - breast cancer patient
We lost another warrior today - J, the patient with advanced breast cancer, and whom I had introduced to ayurvedic medicine.
I just realised that I have not done an update on her for quite some time.
As she required special care, her family had put her in Assisi Hospice about a month ago. M and I saw her some 3 weeks ago and again about 2 weeks ago. She had always been on drug-induced sleep, though she did awaken during our first visit and was alert, could recognize us and was talking.
During our last visit, on 8 Oct, Wed, her husband tried unsuccessfully to wake her from her deep sleep. But she had looked alright then too, and breathing on her own.
This morning, M called her husband to check on her and was told that she had just passed away. They had brought her home yesterday at her request, thinking to send her back to hospice after two days. She had problem breathing and passed away after one night at home. J must have known time was running out for her.
We visited her wake today, and for all the pain she was in during the past months, she looked so peaceful as if in sleep. Her sister-in-law said she had passed on peacefully.
I have realized that for cancer patients in the advanced and terminal stage, appearance can be deceiving. For some, they looked fine and then suddenly their condition deteriorated very fast in a matter of days.
I just realised that I have not done an update on her for quite some time.
As she required special care, her family had put her in Assisi Hospice about a month ago. M and I saw her some 3 weeks ago and again about 2 weeks ago. She had always been on drug-induced sleep, though she did awaken during our first visit and was alert, could recognize us and was talking.
During our last visit, on 8 Oct, Wed, her husband tried unsuccessfully to wake her from her deep sleep. But she had looked alright then too, and breathing on her own.
This morning, M called her husband to check on her and was told that she had just passed away. They had brought her home yesterday at her request, thinking to send her back to hospice after two days. She had problem breathing and passed away after one night at home. J must have known time was running out for her.
We visited her wake today, and for all the pain she was in during the past months, she looked so peaceful as if in sleep. Her sister-in-law said she had passed on peacefully.
I have realized that for cancer patients in the advanced and terminal stage, appearance can be deceiving. For some, they looked fine and then suddenly their condition deteriorated very fast in a matter of days.
Tuesday, 20 October 2009
AJ update
AJ just had her ctscan done a couple of weeks ago and had also seen her onco.
Her previous ctscan had shown that her tumour was slightly bigger and there was also a new one. However, with this recent ctscan, there was no new lump and the tumour had shrunk. Fortunately, AJ had asked for a 6-week break then. Now, with the results of her new ctscan, her onco decided not to go ahead with the chemo for her, though she is still on oral chemo. The AM wants her to cut down and stretched out her oral chemo.
What a relief!
Her previous ctscan had shown that her tumour was slightly bigger and there was also a new one. However, with this recent ctscan, there was no new lump and the tumour had shrunk. Fortunately, AJ had asked for a 6-week break then. Now, with the results of her new ctscan, her onco decided not to go ahead with the chemo for her, though she is still on oral chemo. The AM wants her to cut down and stretched out her oral chemo.
What a relief!
Postmortem - HH, Fleur
I was at HH's funeral on Sunday and learnt from P, another survivor, that HH had had chemo on Monday, 12 Oct. I did not know the name of the drug, and P thought is was Avastin, but by 14 Oct, Wed morning, she was gone.
When they found that the cancer had spread to her brain, the doctors had deliberated on their next course of action, i.e. where they should start treating her first.
Earlier on, before this last dose of chemo, I had learnt that there were already physical symptoms that her liver was running into problems - the colour of her urine, colour of her eyes and her bloated stomach. In her condition, I wonder why her onco went ahead with the chemo for her. Essentially, didn't that mean that the chemo killed her? Would her death be classified as 'death from cancer' or 'death from chemo'? Would the doctors or hospital even admit?
True, cancer kills too, but chemo kills faster.
HH had always been a model patient. She had faith in her doctors and she trusted them with her life. I recalled some months back when several of us were talking about the side effects of certain drugs, and I mentioned that if it could be proven that the side effects were caused by certain drugs, it would be sueable. HH was the first to speak out in defense of the doctors. I had meant the pharmaceutical company and not the doctors, but nobody was interested in knowing more and I let the matter rest.
Fleur, a breast cancer patient, who had been fighting a long battle, had also been treated with different drugs. From her blog, the last chemo drug that she was on, Ixempra, caused her much suffering. Not long after, she died from total liver failure. Before that, she was also having problems with her liver - bloated tummy and jaundice.
She mentioned that she was told (she did not mention where she got this info from) that if the liver could regenerate itself, she would be alright. I am no expert in this area, but I know enough to know that a liver damaged by chemo, if there is any chance of recovery, would take a long time, and with medication, but chemo has to be stopped. So, I don't understand how it is possible for the liver to 'regenerate itself', while she was still undergoing chemo. Likewise, with HH, was it cancer or chemo that killed her? Which category did she come under?
Chemo caused damage to the liver and kidneys, which is why before every dose, we had to have the liver function and renal function tests done. Chemo also wipes out the immune system leaving the body too weak to fight on its own.
How can doctors ignore all these signs and still go ahead with chemo? What did they hope to achieve? A miracle? When then would they consider that a patient has had enough? At the exhaustion of their funds or lives? Did they really have the patients' welfare at heart? Would they do this to themselves or even to their loved ones?
Whatever happened to the Hippocratic Oath that doctors had to take, or are they even continuing with the act of oath taking? And if they are, does not the oath taking mean something?
HH would not have liked me to write such a post, as she believed that the doctors are doing their best, even to the end.
For HH and Fleur, at least, they suffer no more.
When they found that the cancer had spread to her brain, the doctors had deliberated on their next course of action, i.e. where they should start treating her first.
Earlier on, before this last dose of chemo, I had learnt that there were already physical symptoms that her liver was running into problems - the colour of her urine, colour of her eyes and her bloated stomach. In her condition, I wonder why her onco went ahead with the chemo for her. Essentially, didn't that mean that the chemo killed her? Would her death be classified as 'death from cancer' or 'death from chemo'? Would the doctors or hospital even admit?
True, cancer kills too, but chemo kills faster.
HH had always been a model patient. She had faith in her doctors and she trusted them with her life. I recalled some months back when several of us were talking about the side effects of certain drugs, and I mentioned that if it could be proven that the side effects were caused by certain drugs, it would be sueable. HH was the first to speak out in defense of the doctors. I had meant the pharmaceutical company and not the doctors, but nobody was interested in knowing more and I let the matter rest.
Fleur, a breast cancer patient, who had been fighting a long battle, had also been treated with different drugs. From her blog, the last chemo drug that she was on, Ixempra, caused her much suffering. Not long after, she died from total liver failure. Before that, she was also having problems with her liver - bloated tummy and jaundice.
She mentioned that she was told (she did not mention where she got this info from) that if the liver could regenerate itself, she would be alright. I am no expert in this area, but I know enough to know that a liver damaged by chemo, if there is any chance of recovery, would take a long time, and with medication, but chemo has to be stopped. So, I don't understand how it is possible for the liver to 'regenerate itself', while she was still undergoing chemo. Likewise, with HH, was it cancer or chemo that killed her? Which category did she come under?
Chemo caused damage to the liver and kidneys, which is why before every dose, we had to have the liver function and renal function tests done. Chemo also wipes out the immune system leaving the body too weak to fight on its own.
How can doctors ignore all these signs and still go ahead with chemo? What did they hope to achieve? A miracle? When then would they consider that a patient has had enough? At the exhaustion of their funds or lives? Did they really have the patients' welfare at heart? Would they do this to themselves or even to their loved ones?
Whatever happened to the Hippocratic Oath that doctors had to take, or are they even continuing with the act of oath taking? And if they are, does not the oath taking mean something?
HH would not have liked me to write such a post, as she believed that the doctors are doing their best, even to the end.
For HH and Fleur, at least, they suffer no more.
Friday, 16 October 2009
Goodbye E, J and HH
E (female) and J (male), both passed on recently from colorectal cancer.
14 Oct, Wed, I was leaving Kg Senang after a volunteer session when I noticed I had an sms from LY's son informing me of HH's wake. HH's wake? I hadn't had my specs on and thought I read it wrong. I fumbled for my specs and put it on. There was no mistake - it was about HH's wake. So, when did she passed away? It's a little strange to get a message informing me of her wake when I had not received news of her passing. She had passed on peacefully, surrounded by family members, that very morning.
LY's son had visited her on Monday and she had looked fine then.
M and I had seen her on 7 Oct and she was still alert and eating and talking, although it was obvious that her stomach and legs were swollen. The skin on her legs were taut.
HH was the founder of TRC, a support group for people with recurrent cancers. It was her life and she was very passionate about it. While we were there, she kept talking about the support group, the upcoming events and what should be done. Even though she was on the 'dangerously-ill list' (DIL), she made no mention of her own condition, but was very focused on TRC.
HH had been fighting a relapse since last year and was on long term chemo. After her one month break from chemo, tests showed that the cancer had spread to her brain, and her markers had gone back up to before chemo level.
HH's fight was a tough one. She and her onco battled the cancer, strategized with change of drugs and backed-up with blood transfusions (3 that I knew of, sometime end of last year) when the blood test results were not satisfactory.
HH always put others before self. Her thoughts and concerns were always about others even when it was obvious to us that she was so ill. She tried her best as far as possible to ensure that any sick member who needed member support would not be left alone to undergo checkups or therapy.
She will be missed.
14 Oct, Wed, I was leaving Kg Senang after a volunteer session when I noticed I had an sms from LY's son informing me of HH's wake. HH's wake? I hadn't had my specs on and thought I read it wrong. I fumbled for my specs and put it on. There was no mistake - it was about HH's wake. So, when did she passed away? It's a little strange to get a message informing me of her wake when I had not received news of her passing. She had passed on peacefully, surrounded by family members, that very morning.
LY's son had visited her on Monday and she had looked fine then.
M and I had seen her on 7 Oct and she was still alert and eating and talking, although it was obvious that her stomach and legs were swollen. The skin on her legs were taut.
HH was the founder of TRC, a support group for people with recurrent cancers. It was her life and she was very passionate about it. While we were there, she kept talking about the support group, the upcoming events and what should be done. Even though she was on the 'dangerously-ill list' (DIL), she made no mention of her own condition, but was very focused on TRC.
HH had been fighting a relapse since last year and was on long term chemo. After her one month break from chemo, tests showed that the cancer had spread to her brain, and her markers had gone back up to before chemo level.
HH's fight was a tough one. She and her onco battled the cancer, strategized with change of drugs and backed-up with blood transfusions (3 that I knew of, sometime end of last year) when the blood test results were not satisfactory.
HH always put others before self. Her thoughts and concerns were always about others even when it was obvious to us that she was so ill. She tried her best as far as possible to ensure that any sick member who needed member support would not be left alone to undergo checkups or therapy.
She will be missed.
Sunday, 30 August 2009
J - update
J had turned up as usual for her herbal brew. However, upon arrival, she refused to alight from the car, saying that her arm was very painful and she could not walk. No amount of coaxing was able to move her.
The night before she had vomitted due to indigestion. Her husband was concerned about her lack of appetite and weight loss and had given her Nestum cereals. Unfortunately, due to her weakened stomach, she had problem with digestion and had vomitted.
AM's advice was that, for the time being, it was okay if she doesn't want to eat, and that she could take up to 10 cups of milk+ghee+honey a day. Her husband was also advised to keep her warm, meaning no fan and aircon.
The night before she had vomitted due to indigestion. Her husband was concerned about her lack of appetite and weight loss and had given her Nestum cereals. Unfortunately, due to her weakened stomach, she had problem with digestion and had vomitted.
AM's advice was that, for the time being, it was okay if she doesn't want to eat, and that she could take up to 10 cups of milk+ghee+honey a day. Her husband was also advised to keep her warm, meaning no fan and aircon.
AJ update
26 Aug, Wednesday, AJ went for her checkup and got the results of her ctscan which she had done about a week ago.
According to her onco, her prognosis was not good. Onco's interpretation of the ctscan was that there was a new lump on her lung and her current tumour had become bigger. Her onco wanted to put her on chemo again with stronger drugs. AJ asked for a 6-week break.
AM said the supposed 'new lump' was not a lump at all, rather it was a shadow that the ctscan happened to capture. Her current tumour had not grown bigger, it had simply smoothened out. The chemo had caused the tumour to shrivel and since AJ had stopped chemo, the tumour had smoothened out. Even with medication, it takes time for the tumour to shrink. The AM told AJ not to worry and assured her that he would take care of it.
The ctscan results and the prognosis her onco gave her caused AJ's relatives to be very concerned, and in turn put a lot of stress on AJ. I had been stressed too as I had been sharing my experience with AJ which could have influenced her and led her to stop chemo. Although AJ had felt fine, she had been unduly worried too as her confidence in the AM had grown with her progress, and she had not expected that kind of ctscan results. I must admit that until we saw the AM on Friday, my confidence had taken a hard knock.
With the AM's assurance, I hope AJ is more at ease now. Dealing with an illness like cancer, the condition of the mind is very important. We ought to remain steady, and not to panic as that will stressed ourselves out.
According to her onco, her prognosis was not good. Onco's interpretation of the ctscan was that there was a new lump on her lung and her current tumour had become bigger. Her onco wanted to put her on chemo again with stronger drugs. AJ asked for a 6-week break.
AM said the supposed 'new lump' was not a lump at all, rather it was a shadow that the ctscan happened to capture. Her current tumour had not grown bigger, it had simply smoothened out. The chemo had caused the tumour to shrivel and since AJ had stopped chemo, the tumour had smoothened out. Even with medication, it takes time for the tumour to shrink. The AM told AJ not to worry and assured her that he would take care of it.
The ctscan results and the prognosis her onco gave her caused AJ's relatives to be very concerned, and in turn put a lot of stress on AJ. I had been stressed too as I had been sharing my experience with AJ which could have influenced her and led her to stop chemo. Although AJ had felt fine, she had been unduly worried too as her confidence in the AM had grown with her progress, and she had not expected that kind of ctscan results. I must admit that until we saw the AM on Friday, my confidence had taken a hard knock.
With the AM's assurance, I hope AJ is more at ease now. Dealing with an illness like cancer, the condition of the mind is very important. We ought to remain steady, and not to panic as that will stressed ourselves out.
Sunday, 23 August 2009
Flora (Fleur) - RIP
I came back from taiji this morning and checked her blog. I learnt that she was already gone at 0530 hours.
Though I don't know her personally, I felt a sense of loss. She was so young. I wanted to post an update on her, but I suddenly felt very tired and was not in the mood for any posting.
I am especially affected when cancer patients die so young. I know practically all of us put up a big fight, and yet inevitably not all will win. For the victors, we don't know how long victory is ours, but we do know that we won the last round.
Flora, rest in peace.
Though I don't know her personally, I felt a sense of loss. She was so young. I wanted to post an update on her, but I suddenly felt very tired and was not in the mood for any posting.
I am especially affected when cancer patients die so young. I know practically all of us put up a big fight, and yet inevitably not all will win. For the victors, we don't know how long victory is ours, but we do know that we won the last round.
Flora, rest in peace.
Saturday, 22 August 2009
J - update
J went for her ayurvedic medicine last night - her third dose.
I was really glad to see her, and best of all, she looked so much more improved than from 2 weeks ago. Then, she was all hunched over even when sitting. She was also one very unhappy J and wasn't talking much.
Last night, she was sitting upright in the wheelchair. She was smiling and so chirpy, and was very excited about seeing a dog, a Pomerian mixed, at the premises. She was trying to get the dog's attention, unfortunately, the dog is very old, unstable on her feet, can hardly see and has problem with her sense of balance. M, her husband, told me that their dog died last year and that J loves dogs and cats. An animal lover - I wonder if she should get another dog to brighten up her spirits.
She was clearly in much better mood last night and even M appeared more relaxed. She could even carry on a conversation with me and AJ. I was really pleasantly surprised. I am very happy for her and hope she continues to be on the mend.
Sometimes, I must admit I am glad when oncos tell cancer patients that they have tried their best and that there is nothing else they can do for the patient. Confronted with this, cancer patients should put oncos, chemos and rt's aside and concentrate on alternative therapy. At least, they do not have to have nagging doubts of whether they are making the right decision to stop conventional and go for alternative, because there is no choice. Oncos have given up, so what else is there for cancer patients to deliberate over?
I was really glad to see her, and best of all, she looked so much more improved than from 2 weeks ago. Then, she was all hunched over even when sitting. She was also one very unhappy J and wasn't talking much.
Last night, she was sitting upright in the wheelchair. She was smiling and so chirpy, and was very excited about seeing a dog, a Pomerian mixed, at the premises. She was trying to get the dog's attention, unfortunately, the dog is very old, unstable on her feet, can hardly see and has problem with her sense of balance. M, her husband, told me that their dog died last year and that J loves dogs and cats. An animal lover - I wonder if she should get another dog to brighten up her spirits.
She was clearly in much better mood last night and even M appeared more relaxed. She could even carry on a conversation with me and AJ. I was really pleasantly surprised. I am very happy for her and hope she continues to be on the mend.
Sometimes, I must admit I am glad when oncos tell cancer patients that they have tried their best and that there is nothing else they can do for the patient. Confronted with this, cancer patients should put oncos, chemos and rt's aside and concentrate on alternative therapy. At least, they do not have to have nagging doubts of whether they are making the right decision to stop conventional and go for alternative, because there is no choice. Oncos have given up, so what else is there for cancer patients to deliberate over?
Wednesday, 19 August 2009
Fleur - breast cancer patient
I don't know Flora (Fleur) personally and found her blog through Molly Lee's blog at wearewonderwomen.com. Fleur's blog is here, and the url is embeded in the title as well.
She was diagnosed with breast cancer in Nov 2001. She had a stage 4 relapse, meaning the cancer had mets to her liver and bones in August 2006 and, if I am not mistaken, she has been fighting cancer till now.
I checked her blog once in a while to find out how she is doing. Her absence from blogging for 2 weeks caused a lot of concern among her blog followers. It has been made known that her liver has failed totally and she is in a lot of pain. Her family is requesting for prayers for her.
I just checked her 'my treatment trail' and I am amazed, totally amazed at the amount of chemo that has been pumped into her body. I wonder how much chemo toxins can one's body, comprising of flesh, blood and skin, take? When do the oncos decide when it is time to stop? When will I ever hear oncos say, "okay, you have enough chemo for now, you should try alternative and natural therapy to build up your immune system so that it can continue the fight for you"?
Chemo drugs cause damage to the liver and kidneys and that is why before every cycle of chemo, we have to have our blood tested for liver and renal functionality.
I am not against chemo totally, but I always feel that chemo should only be used when necessary and sparingly. Afterall, chemo does not cure cancer. All it does is kill the cells, cancerous and healthy ones as well. After the chemo has done its job, we still need to depend on our good cells and immune system to free ourselves of cancer. So, of what good is an immune system if it has been battered so thoroughly by chemo?
I have not read her blog from beginning to the end, so I am not exactly sure of all the details, but I do wonder, which is taking the toll on her body, the cancer or the chemo?
She was diagnosed with breast cancer in Nov 2001. She had a stage 4 relapse, meaning the cancer had mets to her liver and bones in August 2006 and, if I am not mistaken, she has been fighting cancer till now.
I checked her blog once in a while to find out how she is doing. Her absence from blogging for 2 weeks caused a lot of concern among her blog followers. It has been made known that her liver has failed totally and she is in a lot of pain. Her family is requesting for prayers for her.
I just checked her 'my treatment trail' and I am amazed, totally amazed at the amount of chemo that has been pumped into her body. I wonder how much chemo toxins can one's body, comprising of flesh, blood and skin, take? When do the oncos decide when it is time to stop? When will I ever hear oncos say, "okay, you have enough chemo for now, you should try alternative and natural therapy to build up your immune system so that it can continue the fight for you"?
Chemo drugs cause damage to the liver and kidneys and that is why before every cycle of chemo, we have to have our blood tested for liver and renal functionality.
I am not against chemo totally, but I always feel that chemo should only be used when necessary and sparingly. Afterall, chemo does not cure cancer. All it does is kill the cells, cancerous and healthy ones as well. After the chemo has done its job, we still need to depend on our good cells and immune system to free ourselves of cancer. So, of what good is an immune system if it has been battered so thoroughly by chemo?
I have not read her blog from beginning to the end, so I am not exactly sure of all the details, but I do wonder, which is taking the toll on her body, the cancer or the chemo?
Wednesday, 12 August 2009
J - advanced breast cancer patient
I had posted about the family of a cancer patient who was seeking an alternative treatment for her. She is J, who has advanced and mets breast cancer.
Her family had a hard time persuading her to go for ayurvedic medicine. Upon arrival at the ayurvedic master's place, she had a change of heart and was unwilling to alight from the vehicle. She finally relented after much persuasion.
I was mistaken about her chemo. Apparently she had already started chemo, but could not continue at the moment as there was some problem with her blood.
She was in a bad shape. The cancer had spread to her lymph nodes and she was in a lot of pain. She was hunched over and her right arm was very painful to the touch.
She was perspiring profusely only from her head, which according to the ayurvedic master, was a sign of severe liver damage.
The AM reproached me for not bringing her for treatment before she went for her chemo. When I visited LY in hospital, M had brought me to see J as well, and that was the only time I had seen her. But, I had introduced J to the AM as my friend, to save all the explaining. Thus, the AM had assumed that I had known J for a long time and thought I had not shown enough concern for her as a friend should.
Anyway, his comments did not affect me, rather I am more concerned with whether anything can be done for J. All who know me are aware that I am taking alternative medicine. I have always been very open about my health and the treatment I am on. I cannot force others to do as I have done, but I am always ready and willing to share my experience whenever I am asked. And with J, as well as with LY, I have done whatever is possible within my means.
J's husband drove a vehicle that is a combination of a car and a truck, and the undercarriage is quite high. We had a hard time getting J onto the passenger seat for the trip home. As her right arm was painful, she could not be physically held and helped onto the seat and a lot of maneuvering was required.
Her family had a hard time persuading her to go for ayurvedic medicine. Upon arrival at the ayurvedic master's place, she had a change of heart and was unwilling to alight from the vehicle. She finally relented after much persuasion.
I was mistaken about her chemo. Apparently she had already started chemo, but could not continue at the moment as there was some problem with her blood.
She was in a bad shape. The cancer had spread to her lymph nodes and she was in a lot of pain. She was hunched over and her right arm was very painful to the touch.
She was perspiring profusely only from her head, which according to the ayurvedic master, was a sign of severe liver damage.
The AM reproached me for not bringing her for treatment before she went for her chemo. When I visited LY in hospital, M had brought me to see J as well, and that was the only time I had seen her. But, I had introduced J to the AM as my friend, to save all the explaining. Thus, the AM had assumed that I had known J for a long time and thought I had not shown enough concern for her as a friend should.
Anyway, his comments did not affect me, rather I am more concerned with whether anything can be done for J. All who know me are aware that I am taking alternative medicine. I have always been very open about my health and the treatment I am on. I cannot force others to do as I have done, but I am always ready and willing to share my experience whenever I am asked. And with J, as well as with LY, I have done whatever is possible within my means.
J's husband drove a vehicle that is a combination of a car and a truck, and the undercarriage is quite high. We had a hard time getting J onto the passenger seat for the trip home. As her right arm was painful, she could not be physically held and helped onto the seat and a lot of maneuvering was required.
Thursday, 6 August 2009
Seeking an alternative
M had passed my contact to the husband of a patient, with advanced mets breast cancer, when he asked about alternative treatment.
Last night, the husband's sister called. After she introduced herself, she asked, 'what do you want my sister-in-law to do', or something to that effect. I didn't know what she was expecting, and told her that it was not up to me to tell her what to do, and the most I could do was share my experience with her, but the decision is up to them.
During the course of our conversation, she realised that I was not the one providing the ayurvedic treatment, but actually one of those receiving it. This explained her opening question. I was not surprised, when messages got passed on, especially in a situation like theirs, sometimes the meanings become distorted.
This patient's cancer had advanced to a stage where the doctors ruled out surgery as not possible now. She was supposed to start chemo but they are still waiting for her condition (from blood tests results) to improve before they proceed. Meanwhile she is in a lot of pain and the doctors are not optimistic. She has given up the fight and has to be persuaded to eat. Her husband and daughter are not giving up and wanted a second or alternative opinion.
I can relate to their situation. For the patient, when the docs have given up, it will take a lot of courage and determination to stay positive and put up a good fight while enduring the pain. This lady, like some others would prefer to let go and hope that it will be all over soon. Whereas, the family members would be trying their utmost looking for alternatives or getting confirmation before they are ready to admit defeat.
Although I have not said so, I am hoping to see them there when I go for my medicine on Friday, and I am also hoping that it will not be too late for the ayurvedic master to do something for her.
Last night, the husband's sister called. After she introduced herself, she asked, 'what do you want my sister-in-law to do', or something to that effect. I didn't know what she was expecting, and told her that it was not up to me to tell her what to do, and the most I could do was share my experience with her, but the decision is up to them.
During the course of our conversation, she realised that I was not the one providing the ayurvedic treatment, but actually one of those receiving it. This explained her opening question. I was not surprised, when messages got passed on, especially in a situation like theirs, sometimes the meanings become distorted.
This patient's cancer had advanced to a stage where the doctors ruled out surgery as not possible now. She was supposed to start chemo but they are still waiting for her condition (from blood tests results) to improve before they proceed. Meanwhile she is in a lot of pain and the doctors are not optimistic. She has given up the fight and has to be persuaded to eat. Her husband and daughter are not giving up and wanted a second or alternative opinion.
I can relate to their situation. For the patient, when the docs have given up, it will take a lot of courage and determination to stay positive and put up a good fight while enduring the pain. This lady, like some others would prefer to let go and hope that it will be all over soon. Whereas, the family members would be trying their utmost looking for alternatives or getting confirmation before they are ready to admit defeat.
Although I have not said so, I am hoping to see them there when I go for my medicine on Friday, and I am also hoping that it will not be too late for the ayurvedic master to do something for her.
Wednesday, 22 July 2009
Farewell I
I wrote about I, an ovarian cancer patient, sometime in June. She has since passed away on 19 July, Sunday.
That's the third cancer patient, whom I know, to pass on in a week.
The three of them are all below the age of 60. And, as far as I know, they have been fighting cancer to the very end. LY died in a hospice and J died in a hospital.
At least, for them, the fights and sufferings are over. For them, death brings relief. But for their loved ones, death brings mixed feelings - relief that the cancer-stricken member is suffering no more, relief that they can get on with their lives again but at the same time, there could be guilt and a sense of loss.
That's the third cancer patient, whom I know, to pass on in a week.
The three of them are all below the age of 60. And, as far as I know, they have been fighting cancer to the very end. LY died in a hospice and J died in a hospital.
At least, for them, the fights and sufferings are over. For them, death brings relief. But for their loved ones, death brings mixed feelings - relief that the cancer-stricken member is suffering no more, relief that they can get on with their lives again but at the same time, there could be guilt and a sense of loss.
Wednesday, 15 July 2009
For LY
I know how you suffered
as I have walked this path before
but I made a u-turn
and is now standing by
watching your progress
with heaviness in my heart
four years plus your fight lasted
it is short and
yet it is long
in the end
your energy is depleted
it took a lot of courage
to go for round after round of chemo
and two rounds of radiotherapy
they know how much toxins
they pumped into you
and yet they persisted
in the end
you were brought down so fast
that family and friends
were caught unawares
I heard you were nearly done in once
but you made a comeback
I had hope you do the same this time round
but it was not to be
hopes dashed
plans and wishes unfulfilled
your sister saw how much you suffered
and she shed tears for you
she wished your sufferings to be no more
so that you can be at peace
finally
let go of the hate
let go of the bitterness
let go of the hurt
let go of the worries
and the attachments
and go in blissful peace
I find solace
in the knowledge
that your struggles are over
that you fight no more
and in the knowledge
that you are now
in a better place
Om Mani Padme Hum
as I have walked this path before
but I made a u-turn
and is now standing by
watching your progress
with heaviness in my heart
four years plus your fight lasted
it is short and
yet it is long
in the end
your energy is depleted
it took a lot of courage
to go for round after round of chemo
and two rounds of radiotherapy
they know how much toxins
they pumped into you
and yet they persisted
in the end
you were brought down so fast
that family and friends
were caught unawares
I heard you were nearly done in once
but you made a comeback
I had hope you do the same this time round
but it was not to be
hopes dashed
plans and wishes unfulfilled
your sister saw how much you suffered
and she shed tears for you
she wished your sufferings to be no more
so that you can be at peace
finally
let go of the hate
let go of the bitterness
let go of the hurt
let go of the worries
and the attachments
and go in blissful peace
I find solace
in the knowledge
that your struggles are over
that you fight no more
and in the knowledge
that you are now
in a better place
Om Mani Padme Hum
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