The Befrienders Programme - a unique feature of NCIS NPC support group

In December 2010, the NPC One Hope launched the Befrienders Programme. Peter suggested the idea and the EXCO committee and medical advisers initiated and fine tuned the idea.

Basically, a Befriender is a cancer survivor who had survived the same cancer and hope to befriend a newly diagnosed NPC patient. He/She will to be a support and a psychological boost to the patient and his family. The patient will feel a sense of belonging and feel assured that there is someone who understand his fear and struggles

Subsequently, the Befriender's objectives are to raise the visibility profile of the NPC support group by introducing the group mission statement , activities/ programs to a new patient/survivor.  This will ensure  group support and continous care can be given throughout the treatment and recovery period of treatment of NPC.  

The Befriender will be stationed at the Radiotherapy Treatment Center at National University Hospital Radiotherapy and Tan Tock Seng Hospital. 

Befriender services are a volunteer service. As such, the nominated cancer survivors have taken their own half day annual leave to come into the hospital to see newly diagnosed NPC patients out of goodwill basis. Newly diagnosed NPC patients who are interested should let the Radiotherapy Treatment Center nurse aware of the need, so that appropriate appointment can be made in advance. 

Otherwise, the cancer survivors EXCO committee will be happy to stay back after the monthly session of the NPC support group meeting for the same purpose. 

Below is the written summary of a testimony by one of the newly diagnosed NPC patient when the Befrienders was first launched. Peter, Moses and myself was in the meeting room. 

Hi Peter/Dr. Choo,

I told Moses and Dr Choo that it was a miracle for us to meet you and the gang last December.  When my husband was confirmed to have npc, it was a long day running to various departments to get things done and we were exhausted by 5pm and were ready to go home to tell our children of the outcome.  Having to attend a support group meeting was wearisome and we thought it was useless.  God intervened.  You called us just when we were almost done.  We felt obliged and therefore found our way to the little room behind the carpark.  I am very thankful for all the sacrifices you guys made for people like us and I didn't realize that this 'befriender' group is a new project.  We have benefited a great deal from it and when I met Sylvia the first time, I wished I had met her earlier to learn more about how to handle the therapy.  Good job. 

YY Kwong (caregiver) – wife of RY, 1 year NPC survivor (written in December 2011)

Few months ago, Peter, Yvonne and myself visited another patient who attended the same Befriender's meeting session with RY. He had underwent radiotherapy/chemotherapy but relapsed a few months later and had to undergo surgery. 

Peter just received the Patient Exemplary Award on that day (30 September 2011) at TTSH. During refreshment time,  we were escorted into the VIP room (photos below). By 6p.m, Peter asked for permission to bag some of the leftover food (there were all good food) and said we ought to take them to visit this patient on the ward. 

When he saw us from his ward bed, he immediately lighted up and was very pleased he had visitors.  He just underwent a nasopharygectomy operation that lasted more than 6 hours and his nose was still in bandage and there were some blood on his dressing. Yet, he chatted as if the surgery was nothing. Peter then handed the food to him and said "This is for your family" - knowing that the patient cannot eat after the surgery. This patient has a young family and recently has some financial difficulties due to his cancer and lost of income. Peter knew his social background well enough to look into this fine details. 

Indeed, his family turned up later and the kids were excited about the food.

As I left the ward later, I felt happy that the Befrienders Programme has worked out well. I felt honoured to know Peter and Yvonne and many of the NPC cancer survivors especially those who are in the EXCO committee (Yip, Slyvia, Moses, Dave, Affendi, Richard, Carol) to have volunteer their time and energy to walk the journey together as a group.

Dr. Choo Bok Ai
Medical Adviser

Peter collecting the award from Prof Chee, CEO of NHG

Group photos with other winners for the award ceremony

In the VIP room

Photos with Prof Nellie Yeo, NHG Chief Quality Officer

NPC Year End Party 19th November 2011 at NUH. Coverage by MediaCorp Suria channel

The year end Party is our yearly Celebration of Life Party. This year, the title was "We have fought, we have endured and we have won". This is the first time that the party was held at NUH as previously for the past 2 years, it was held at TTSH.

The party was filled with Line dancing, piano recital by Peter, Song presentation by Slyvia and Dave and also Mr. Yip's students at the Jurong West Secondary School. The event was captured on TV and later was featured at the 8p.m Media Corp Suria news channel. Affendi and Said gave testimonies on their experiences and treatments. I was asked about NPC incidence, treatment and  NCIS NPC support group (see photos). We finished off the party with catered and home cooked food (pot-luck style)

I am thankful for the help from my colleagues from Radiotherapy Treatment Center and other departments in organizing the event. The monthly NPC meeting also relies heavily on my staffs support in the background and during the event day itself. They have volunteered their Saturday afternoon (NUH) and Friday night (TTSH) every alternating months to help out. 

Below are some testimonies on the event:

1) Hi Peter/Dr. Choo

Here are my feedback for the Thanksgiving Party last Sat

The programme was done with lots of fun and easy to enjoy events like the karaoke, line-dancing and short sharing. The MC, Sylvia, created a light-hearted and celebratory mood. Time was given to catching up with each other and also making new friends. Great.The lunch was good and many of us brought some food for sharing too.The involvement of some Secondary School students to come and help to set up the place and to entertain us with an item is commendable. Word of thanks to the organisers who not only enabled the event to happen but also donated generously to the lucky-draw prizes. Their enthusiasm was seen beaming in the way they serve.

The goal of this group which is to help the pool of survivors of NPC is indeed a goal worth more support from our governmental agencies.  

My appreciation and thanks to all organisers…..

Regards

RY

2) Hi Peter/Dr. Choo

The theme ‘Celebration of Life’ was appropriate because every extra year as a survivor is something to be thankful for. The programme also put in perspective the role of the caregiver, without them, the journey for the cancer patients would be difficult. It was a platform for survivals to encourage one another into a positive lifestyle and also provided a network for them to meet both emotional and physical needs.  The party is a culmination of the year’s events of talks and forum, something which I have benefited tremendously even as a caregiver.  Apart from the professional teachings, interaction with fellow survivors gives insight to practical tips which are impossible during visits at the doctors’ clinics.The atmosphere and setting was relaxed and ideal for a party for people who know each other. 

YYKwong (caregiver) – wife of RY, 1 year NPC survivor

3) Hi, Peter,

Carol and I would like to thank you, and the other organizers, for arranging a thoroughly enjoyable Celebration of Life party for the support group last Saturday, the 19th.

A Celebration, indeed. The survivors' enthusiastic participation in learning and practicing line dancing, and joining in the karaoke renditions of life-affirming songs, was both fun and inspirational.  Seeing people who a short time ago were in danger of not seeing another year of life laughing and having a good time was a joy.

It was particularly enjoyable to discover the talents of our own members: performing on the piano and singing with "Singapore Idol" skill and verve.  We could have our own talent show!

Along with such nourishment for the soul, the nourishment for the body that was contributed by the members, as well as the Oral-7 sponsor was happily devoured by all. 

It was great, also, to see the participation by many of the healthcare workers -- doctors, nurses and staff -- who were so instrumental in the survivors being able to participate.  Healing is best done as a team effort, and it was great to see that continue long after treatment. After all, the long-term recovery process needs to be part and parcel of a patent's "treatment".
 So... thanks again, Peter, Dr.Choo and team, for a well-organized and fun Celebration of Life.



Richard Gascoigne (caregiver) & Carol Moosdeen
(2 year old NPC cancer survivor)

4) Dear Peter/ Dr. Choo

I feel the party went on rather well.

Sylvia was awesome in her engaging the participants. She really got everyone

moving in the line-dancing segment - moving their feet, butts, or frantic clapping and arm waving. Not forgetting the beautiful duet with Dave.

Yip and the JWSS students added a zest and young feel to the party, with their acrobatic dancing.

NUH staff put tremendous efforts to ensure a successful event. This is over and above their regular duties at work. Kudos to them.

Thanks must also be expressed to those who contributed prizes for the luck draw, and food at the potluck. There was so much food.

Cheers,

Moses

5) I think it gets better every year.

The best party ever.

Yip KG

6) Personally, it is gratifying to note that at every support meeting, there are lot of affirmation, handshakes, hugs and advice among members. I guess this is what make the support group special - these lovely and vivid memories of members smiling, dancing, personal sharings of their struggles, no pretentions , just candidly baring out their hearts with tears about their fears.....and shoulder to lean on. Thanking you all for these lovely and vivid memories which will etched in the hearts of the Exco. On the point of support, on e of the greatest supporters of the npconeheart suppport group are the onco staff of the NUHS and TTSH. They have been quietly providing the logistical, administrative support and whatever help for the group. Kudos to them for all invaluable help. 

Thanking all of you (including the staff) for rekindling the light in all of us. 

Peter Tang

7) Hi Yvonne and all, Gd morning! 

I agree that it was a great party. From Peter's very professional piano recital to Sylvia's superb opera-class singing and the volunteer KOK singers, the students/line dancers the testimonials sharing, we were just overwhelmed by the many who stepped forward just to share the moment, be it joy, happiness or personal experience.  

Many Thks to so many of u and family members/loved ones and so many NUH staff led by Dr Choo, whom I can't list all in the email, and 1 - Rose, even turned up with her family - big and small as well, just to support us. What more can I say, words just cannot describe the good feeling of not fighting this disease alone, and all of u around who care and show concern for us survivors. This is my 'fortune', better than striking 4D/Toto!

With hope, we shall continue to live life to the fullest everyday, and as Peter puts it, we celebrate another year in life and our pursuit of hope, and we are grateful that we made it another year. Let's continue to believe in ourselves and make it happen for all.

Just want to share this lyrics from a Media Corp Chinese Drama - 出路， Theme Song back in 1998 - 我吃的起苦 - “走出去就有路，寻见到就有福，。。。. The story is about our ancestors who migrated from China in the late 1800s and early 1900s to 'Nanyang' or Singapore, to make a living for themselves and family, in the harshest environment both politically and economically. We, Cancer survivors/patients are just like these new migrants back then when life was so uncertain and future was not even imaginable, and yet they made it, thru perseverence, discipline, and the never-give-up spirit. They broke out of their mould to venture overseas to take the challenge, to find a way out so that life can be better for themselves and their children. This song lyrics is so well written and the tune is so 'power-pact', that it instills a powerful strength in me that we can do it, starting anew with a new lease of life, with the right spirit and attitude, just like our ancestors. I'll make sure that we hv this song listed on our get-together KOK next time.       

Cheers

Dave 

8) The Staff Lounge is a nice venue for the Party.  The Caregivers appreciation was meaningful and well organised.  Sylvia was super MC and the duet with Dave was great.  Rusia also added onto the fun.  We had a good range of participation/appeal - new generation (JWSS) and oldies (opera singing).  Also multi-racial, with Rusia singing a Chinese song.  We really achieved a time of Hang Loose and Have FUN. 
  
Also thanks to all who worked behind the scenes which might have gone un-noticed.  To J (Moses wife) and two lovely daughters, N and A.  One of whom got univ. exams today, but took precious time off to help out at the registration counter, when she could have spent time at home studying for her exams.  Their kind assistance helped free me to concentrate on the Lucky Draw and Pot Luck. 
  
To Peter, for the many hours of doing up the powerpoint and phonecalls to the survivors/caregivers personally besides sending emails as reminders. 
    
Cheers 
Yvonne

Banner - Celebration of Life Party 2011
We have fought, we have endured and we have won

Line dancing

Media Corp Suria interview

Media Corp Suria interview

Dave and Slyvia (MC) 

Peter on the piano

Dr. Choo playing the guitar

Group photos

Staffs and volunteers

Listening to talk

Our "Birthday" cake

NCIS cancer survivors celebration party - 26 February 2012

Dear Members,

This week, NCIS is celebrating cancer survivors day by bringing together all the different cancer groups. Some of the EXCO committee members from our groups at NUH and TTSH will be there to represent the NPC cancer survivors.

I believe it is a good opportunity to come together as a group and to showcase our experiences in running our group and learn from other groups about their experiences in coping and surviving cancers.  The registration fee is $10 to cover the refreshment and various activities. Please do register with Patrick.

See you there.

Dr. Choo Bok Ai
Medical Adviser

LATEST UPDATE - NCIS WILL ABSORB ALL CHARGES. THE EVENT IS NOW FREE FOR ALL! COME AND JOIN US.

FREE

March 2012 NPC Support Group Talk at NUH

Dear Members of the support group,

For 12years after treatment  I consistently maintain a good oral hygiene using sensodyne , flossing etc.. However from about the 8^th year onwards  my gums began to recede , sensitivity got worse , gums were turning pale and bled easily. I guessed this deterioration has began as far back as when I finished the treatment.  Then the  doctors did not give any warning concerning this or any information related to Oral hygiene . Ironically  at a talk which I initiated at the support group on oral care and hygiene for npc patients , I learnt clearly the cause and effects of radiotherapy on gums . I learnt about biotene gel  , paste and saliva substitutes.  .Now after a period of consistent application , the bleeding has stopped, the sensitivity has reduced  and the gums looks much better. A recent visit to consult  my dentist also showed that there might be a decay in one of my tooth in an xray taken . Scaling too has become a challenge cos of the sensitivity of the teeth

It has been 20 years after treatment and I find that one of the side effects that I have to be content with is still the dryness of the mouth and problems relating to oral matters . I believed that this is one area that I need to be on my toes . Therefore I   have consistently maintained a good followup program with my Dental Doctor who will monitor any changes knowing my history of NPC

I believe too that  most of us do experience various degree of post radio side effects of the oral cavity . What are the long term implications for the survivors with  damage salivary glands , how about saliva substitutes, problems with gums, sensitivities of the teeth , can one  remove a decay tooth ?  if a tooth can't be extracted what are the options available ?  When does one do  a root cannel treatment ?  Why do we  need to avoid using  mouth gargle with alcohol ?  Can constant use of the chewing gums help to stimulate the salivary gums ? When I consume fruits like strawberry , pineapples , why do my teeth feel more sensitive after I eat fruits like strawberry , pineapples or even after eating chocolates ..? What are the latest oral products  available in the market ? ……All these questions highlight some of the  problems that we survivors face. If any of you have queries concerning your oral health please do email me your questions so that I can forward it to Dr Shawn Goh .

Our speaker Dr Shawn Goh spoke to us on the same topic last year and we have invited him back because from the survey taken members benefited much because of his clear , concise and humourous way in sharing the information .

See you on the 3rd March. Admission is free. 

Regards,

Mr. Peter Tang