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 :

"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."

"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."

"We hope to set up a meeting with R and B, who did the face surgery in TTSH. These two have some similarities in their condition, and I hope R's case on daily oral chemo may bring some light for B."

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.

Art Therapy

27 Mar 2010 - Saturday - My daughter and I attended an art therapy session organised by the Psychosocial Oncology Dept at NCC. Its aim is for family members to bond through art.

We warmed up with drawing outlines of our hand or foot, and getting other attendees to outline theirs on our paper. Then we had to identify the outlines through the owners.

Next, was the squiggles and doodles that we left on one and other's papers before coming back to our own and trying to make sense of our collection of squiggles and doodles.

Finally, comes the big piece of canvas that all of us laboured on with our love and bonding. My daughter decided on the theme and did the sketching. I helped with the painting and probably messed up her idea as well. I think it did not matter how the painting turned out, but we enjoyed ourselves messing with the paints.

The organisers are planning an art exhibition for our labour of love sometime in April in an art gallery in Joo Chiat. Cool, artists wannabes.

The products of our labour of love :



'The Unwavering Tree' is our combined efforts.

Its precarious position represents the resilient spirits of cancer survivors in overcoming difficulties to lead meaningful lives.

Sentosa outing with NPC support group

Saturday, 13 March 2010 - 3 of us from TRC joined the NPC (nasal pharyngeal cancer) support group on one of their fringe activities. The theme for their fringe activities is 'exercise, eat right and be happy' and this time it's a nature walk in Sentosa.

Having not been to Sentosa for a long time, I was surprised to note the many new developments and changes that have taken place. The flora was evident and plentiful but unfortunately, the fauna was missing, the free-roaming ones, that is.

We took the monorial from Vivocity at Harbourfront. A return ticket costs S$3.00 and we could either get the one-time return ticket from the station counter or use our transitlink card.

The monorial consists of 2 carriages and each has limited seats. One of the bench-like seats in our carriage was occupied by several young and healthy-looking men (very likely from China). We, a group of middle-aged and mostly greying-haired people, were left standing around them. They were looking at us chattering and laughing away but none bothered to offer a seat. Courtesy is dead. Not surprisingly, they got off at the very first stop, which is the Resorts World. I wonder why young men like them cannot stand even for a few minutes and every seat they come to, they have to grace it with their bums. Fortunately, that incident did not dampen the liveliness of the group. We certainly do know how to enjoy ourselves.

We alighted at the Imbiah Station and wandered and walked, up on the elevated boardwalk, through the nature walk, past the waterfalls and on the sandy beach of Siloso, and all the way to Palawan Beach where we lunched at Samundra Restaurant. This restaurant served North Indian Food. The owner of the restaurant is Mr Wong Chak Wai who is also an NPC member. After a sumptuous meal, he showed us how to make yoghurt using organic milk and we went home with a box of yoghurt each.

It was indeed time gainfully spent and we made new friends and learnt a lot from the NPC members, who is a very active support group.

The monorial

Merlion

Flora providing delightful colours along the way.

Luge - part go-cart, part toboggon

The 'Tiger Sky Tower', Singapore's tallest observatory tower.

The elevated boardwalk, forming part of the nature walk.

Imbiah Falls

Part of the nature walk

Siloso Beach

Learn how to surf from here

My lunch - chicken curry on naan.

Interior of Samundra Restaurant - nice ambience.

From the Beach Station

Counselling and groupwork therapy (cont'd)

Mar 9 and 10 2010, was the last two days of the counselling and groupwork therapy training sessions with 3 doctors and 1 nurse from Vietnam.

We did role-playing of cancer patients and caregivers attending a therapy session.

My persona is the husband of a breast cancer patient. My 'wife' was not keen to continue with chemo as she believed that it was not necessary and was an added suffering. I, 'the husband', wanted her to listen to the doctors and continue with the treatments prescribed.

It was interesting to play the role of someone who is opposed to how I feel about conventional cancer therapies.

I have not attended any counselling session or training before and I am also not very good at role-playing and in a setting like that, and with the facilitator, who is also the trainer actually, playing such a convincingly role, I kept getting my role and my actual self all mixed up.

Towards the end of the session on the 10th of March, we did some sharing of our own experience with cancer. I recalled that when I first suspected and later was diagnosed as having cancer, I had no time for tears, and no time for feeling sorry for myself. I was intently trawlling the internet for information on breast cancer, how best to fight it, the conventional therapies and their side-effects, the questions to ask the doctors, alternative therapies available and what worked.

I recalled that I was pretty much on my own, as those around me did not have the answers I sought. Even if they could not provide me with information, it was consolation to me that they were there for me and provided me with a sounding board when I had information overload.

I recalled that after surgery, I attended a talk for newly diagnosed patients and was very disappointed to find that survivors who were present as support members (I think it was the Breast Cancer Foundation - BCF) were not pro-alternative therapies at all.

How much radiation and chemotherapy can our body take?

One of my neighbours has an aunt with breast cancer. The cancer has relapsed and spread to her brain. The aunt is now totally immobilised and is warded in Dover Park Hospice.

I shared with her LY's story of how she became gradually immobilised after completing her prescribed 12 doses of whole brain radiation therapy, delivered every single day for 12 days with the exception of Saturdays and Sundays. Each dose lasted 15 minutes. With each subsequent dose, she was getting weaker. LY had multiple lesions in her head which was why she required whole brain radiation therapy.

Radiation surgery is for one or two lesions in the brain and is more targeted.

When my neighbour heard that, she said that her aunt's condition is exactly the same as LY's, meaning that she became totally immobilised after completing her whole brain radiation therapy. My neighbour's mum, the patient's sister, and the maid could not cope and they had to send her to Dover Park Hospice.

I wonder if it was necessary to administer such a heavy dosage and in so many doses. What is the survival rate of patients who had received similar treatments? How well did they fare and how long did they live? Unfortunately, we will never know as no statistics has been released. The only two I know of - one is gone and the other is bedridden, and I don't know how long more she can last.

I had a long chat with WC on 21 Feb, Sunday. She is a nasopharyngeal cancer (NPC) patient. Like me, she is anti-conventional and very pro alternative and natural. She was prescribed 6 doses of chemo, but she stopped at 3 and her condition is under control and she is doing fine.

WC and I strongly believe that too many doses of chemo and receiving chemo again with each relapse would be too damaging to our body, and it would be harder for our body to fight back and recover.

A friend, KK, was diagnosed with colon cancer more than 10 years ago. She reacted badly to her first dose of chemo that the oncologist discontinued with her chemotherapy. She had had radiation therapy, but I am not sure if she had surgery. It has been more than 10 years since and she is doing fine. Her case could be genetic as her sister, mum and mum's sister all died from colon cancer at around the age of 40.

I received 5 out of 6 doses of chemo and the ayurvedic master is still struggling with the repair of my liver and kidneys, and it is already nearly 2 years after my last dose of chemo.

I know of a couple of other cases who did not complete their recommended number of doses and who are doing fine with alternative therapies.

If I am not mistaken, the several members that TRC lost in the last few months had had chemo with each relapse. Of course, there could be other factors involved, as I do not have the facts and details. And again, we have no access to statistics.

All I know is that our body comprised of flesh and blood. Chemotherapy is chemical therapy. Chemicals that are usually poisonous and harmful to us. What happens when we apply poisonous chemicals to flesh and blood? Chemo is administered by iv into our blood vessels. They then passed through our whole body, through our organs causing damage, sometimes irreparable, especially to the liver and kidneys.

If given a choice WC and I would prefer not to go for chemo again should we get a relapse, and would rather depend on natural alternatives. We will see how it goes.

Counselling and groupwork therapy

The Dept of Psychosocial Oncology at the National Cancer Centre is conducting a training programme (counselling and groupwork therapy) for 4 Vietnamese healthcare workers (3 doctors and 1 nurse) from 23 Feb to 13 Mar 2010.

They needed patient volunteers for role-playing and I volunteered myself for 3 sessions that will be held at NCC. The email mentioned 'live patients' - mmm.... hmmm... I wonder what they were thinking of.

I have attended the 1st session on 1 Mar, Monday, which is on art and craft. My next two volunteer sessions are on 9 and 10 Mar at NCC. Those will be groupwork training and practice sessions.

The art and craft session was not the usual art and craft stuff that we expected. Rather, it employed a combination of objects, and fine sand, paper and colouring materials, etc to allow or encourage an affected person to express himself/herself. It is called expressive therapy.

We started off with an '3-2-1' ice-breaker, where we introduced ourselves, followed by 3 things we are good at, 2 things we disliked and 1 wish. Some of us preferred to say 3 things we liked instead of good at. No as easy as it seemed when asked on the spot, and it needed some pondering to get our answers out.

Expressive therapy using figurines and other ohjects to express our feeling at that moment.


And this is mine = blue sea and sky and a spherical glass ball (marble), depicting peace and calm.

TRC 'Lohei'

The Revival Connection (TRC) , a support group for patients with recurrent cancers, held its Chinese New Year 'lohei' on 27 Feb 2010, Saturday, at the lobby of NCC.

Since TRC lost its two co-founders and several members over the last few months, the 'lohei' mood seemed a bit subdued and with lesser attendees than last year's.

HH's family contributed the two plates of 'yusheng', and the other food were contributed by some of the members.