A platform for sharing cancer experiences



He was devastated when his paternal grandfather died from lung cancer in 1997.

And Mr Wesley Lye, who was just nine then, did not know how to respond to his classmates when they asked him why he had to pin a black ribbon on his school uniform shirt.

Saddened and confused, Mr Lye tried to forget about his grandfather’s unsuccessful battle against the disease.

But 15 years on, Mr Lye, now 24, who graduated from Nanyang Technological University last year, wants to let others know that they are not alone in the fight against the No. 1 killer in Singapore.

So he sent his deceased grandfather a “Daffodil Candle” – a condolence message to a relative or friend who died from cancer which can be viewed by the public – on the Daffodil Days microsite, www.DaffodilDays.sg.

The microsite, which is linked from the Singapore Cancer Society website, was launched last month as part of the annual Daffodil Days celebration – a month-long global programme to raise funds for and awareness of the fight against cancer.

The programme was launched on April 1 by the Minister for the Environment and Water Resources Vivian Balakrishnan during the 2XU Compression Run along Nicoll Highway.

This is the first time that a microsite was launched in conjunction with the celebration.

Sharing of personal stories

Apart from sending “Daffodil Candles”, users can, among other things, send “Bouquets of Daffodils” – messages to recognise the efforts of caregivers – or simply share their personal story of their battle against the cancer.

All posts are free and can be viewed by the public.

Mr Lye said of his grandfather: “I was very close to him and he always made me laugh. He was also the one who (inculcated) spiritual values in me and taught me to appreciate what I have.

“I was really shocked and sad when he passed away, and I tried to avoid talking about his death.

“But now, I realise that there is no hiding from this disease and there are many people who suffer from it or know someone who suffers from it.

“The Daffodil Days (microsite) allows me to let others know that they are not alone and there are people who care for them.”

The microsite has garnered about 100,000 views since it was launched and there are several posts on it.

Mr Charles Lee, a senior counsellor at the Tanjong Pagar Family Service Centre, said the platform is a good place for an exchange of support by people affected by cancer.

He said: “For those who are (battling) cancer, they would be encouraged by the messages from people who have recovered or are fighting the disease.

“And the people who have recovered would also want to encourage others by showing their support through this platform.”

Other features of the microsite include information on cancer prevention and screening services for the disease.

Madam Judith Mala, who lost her father to cancer, said she is encouraged to hear about the platform.

Said the mother of three, who’s in her 40s: “The microsite is useful and I think people would be encouraged and inspired by the posts.

“Other organisations fighting against diseases should also consider creating such a platform.”

This article was first published in The New Paper.

A gift of hope

by Eveline Gan

For more than a year, Jane Prior’s son, Daniel, grappled with unexplained on-and-off high fevers. By the time doctors nailed down the cause of the fevers, the 11-year-old was getting random bruises over his body.

The diagnosis: Acute myelogenous leukemia, an aggressive form of blood cancer. To survive, Daniel would require a bone marrow transplant.

Speaking at the Bone Marrow Donor Programme (BMDP) press conference last week, Jane told TODAY: “It would have been so easy for us if his siblings were a match but they weren’t. There wasn’t anything else to do but to wait for a match from someone else.”

Three months later, they found a matching donor from Australia. In 1996, Daniel became the first child to receive a successful bone marrow transplant from an unrelated donor at the National University Hospital.

Jane understands how nerve-wrecking the wait for a suitable unrelated bone marrow donor can be for patients and their loved ones. Presently the president of BMDP, the Singapore Permanent Resident now actively campaigns for the urgent need to expand Singapore’s bone marrow donor pool.

At the press conference last week, BMDP announced plans to expand the local register by a further 5,000 volunteer donors this year. There are currently about 50,000 donors in the non-profit organisation’s database.

Each year, 2 in 3 adults in Singapore suffering from various leukaemia and other deadly blood-related diseases will require a bone marrow or blood stem cell transplant in order to survive.

But the chance of finding a match from an unrelated donor is only 1 in 20,000, said Dr Yvonne Loh, haematologist and medical director of the Haematopoietic Stem Cell Transplant Programme at Singapore General Hospital (SGH).

Parents are usually not suitable donors for their children because each child inherits half his set of genes from each parent, explained Dr Loh. Siblings serve as the most suitable blood stem cell donor – the chance of a match is 1 in 4. But in more than 70 per cent of cases, this is not possible.

“In Singapore, our patients have access to the very best medical facilities, but with typically small families there is seldom a matching family member so we still lose lives unnecessarily when no matching donor can be found,” said Jane.

When a match cannot be found in the Singapore registry, the search will extend to other parts of the world. Finding a match typically takes about 15 weeks, but for minority ethnic groups, Dr Loh said the search “can go on for many months”.

Explaining why she volunteered at BMDP a year after her son’s transplant, Jane said: “I didn’t want anyone else suffering from the disease to be told that a match cannot be found simply because they belong to an ethnic minority group.”

As donor match is most likely to be found from within the same ethnic group, BMDP hopes to expand donor sign-ups in the minority groups.

Last year, Shalini Nair, 26, underwent a peripheral stem cell harvest to save a stranger’s life. The process took two days, for seven hours each.

“After the procedure, your life is back to normal but to someone else, your donation has changed their life,” she said. Eveline Gan

Sidebar: Becoming a donor – get your facts right.

Are you going to crack my spine or take a sample of my bone marrow? In her decade-long experience as a Bone Marrow Donor Programme volunteer, Jane Prior said that such misconceptions are still common. Haematologist Dr Yvonne Loh, medical director of the Haematopoietic Stem Cell Transplant Programme at the SGH, clears up the mystery surrounding the donation process.

Myth 1: It is a hassle to sign up as a donor because you’ll need a sample of my bone marrow.

All you’ll need to sign up as a volunteer donor is to provide a sample of your saliva using a buccal swab. The cotton-tip swab is used to collect DNA from the cells of your cheek. You can even arrange for the buccal swab to be sent to you via mail. The DNA information is then recorded in the registry, and you will be contacted to donate if you are found to be a match to a patient.

Myth 2: Bone marrow donation is risky.

If you are found to be a potential match for a patient, BMDP will contact you and arrange for a medical check-up and blood tests to confirm you are a match.

The donation process will be from the vein in your arm (stem cell harvest) or from the pelvic bone (bone marrow harvest). The latter is performed under general anaesthesia. According to Dr Loh, both are safe procedures and risks to donors are mild and rare. Within two weeks of donation, most donors’ blood cell counts would have returned to normal.

Myth 3: I can’t say no after signing up with the registry.

You have the right not to go ahead with the donation process, when you are successfully matched with a patient. However, once you give your consent on the “Intent to Donate” form (this is usually done after undergoing medical check-up and counselling), it is a life-and-death situation for the patient. The patient will undergo pre-transplant treatment which wipes out his bone marrow. If you pull out at this stage, he may die without a transplant.

Call 6327 1344 or visit www.bmdp.org for more information.

Source: Today

Project Hello Stranger


Project Hello Stranger is a voluntary movement for 2012 by a group of crazy happy strangers to spread the spirit of love and giving among all people in Singapore.

People fiddling with their smart phones and tuning in to their music, staring listlessly into space in an attempt to avoid meeting the eyes of the one standing right opposite him. Someone accidentally brushes past and hits his elbow.

tsk.

Sounds familiar? The MRT on a busy morning.

Ever watched 跑吧,孩子!or those nostalgic Channel 8 kampong shows, where it seemed like everyone was friends with everyone, and kids literally LOVED the tok tok mian and ice cream uncle? Yes, sooooo old school, we all wish we were in that era, doing the things they did, running around wild in our kampongs. But what ever happened? The same people residing in this country, but what is it about city life that differs from that kampong that our parents experienced 40 years back?

It’s the pace of life, the development of the country and how it has led us to put other priorities ahead of us. No longer people but things. We treasure that new gadget more than our relationships. We claw for that next 5 figure salary at the expense of our family. And on an everyday basis, we overlook the people around us and their needs in our drive to focus on getting work done.

So, what, really, is Project Hello Stranger about?

Project Hello Stranger is a voluntary movement by a group of Singaporean youths who want to see a happier Singapore. As like in many cities, we are often forced or socialized into building a wall around us due to the competition that we are used to in school and at work, and that permeates into other areas of our lives. However, we know that within those walls lie big hearts and we aim to break them down by infecting Singaporeans with the spirit of giving and love.

This movement involve lots of guerilla strategies and engagement of Singaporeans mainly through social media as we carry out different activities to get Singaporeans to show their soft and friendly side. We believe that a simple act of kindness can spread a whole lot of joy and warmth to the people around us and that’s exactly what Project Hello Stranger is about.

So join us now in putting our hearts into use. Let’s spread some love!

FACEBOOK: www.facebook.com/ProjectHelloStranger
BLOG: HelloStrangerProject.wordpress.com
TWITTER: www.twitter.com/HelloStranger12

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S’pore Bone Marrow Donor Programme calls for 5k volunteers

The Bone Marrow Donor Programme (BMDP) announced its intention to expand its local register by a further 5,000 volunteer donors this year.

BMDP is a Singapore-based non-profit organisation which partners transplant hospitals here to identify matching bone marrow donors for patients stricken with diseases such as leukaemia and lymphoma, who need a bone marrow transplant in order to survive.

The odds of finding a match is only 1:20,000. Expanding the register is thus critical, especially in consideration of the prevalence of small families here, which makes finding a matching family member difficult, said BMDP President Jane Prior.

Click here to find out more!

BMDP relies on public and corporate donations to fund their work.

The total cost of running the organisation is around $1.5 million per annum, including the $750,000.00 required for the 5,000 new donors to be added to the register.

In March, the BMDP’s annual charity ball raised $580,000. These funds will be channelled in to growing the local register, said BMDP.

The amount is expected to cover the cost of adding 80 per cent of this year’s target number of additional donors.

The register today has around 50,000 volunteer donors all signed up and fully tissue typed.

As a donor match is most likely to be found from within the same ethnic group, the target is to expand significantly the registers for the minority groups, BMDP said.

“Public education is key. There are many myths about the donation process and even the requirements for signing up,” said Prior.

She clarified that all it takes is a simple mouth swab to sign up as a donor. This can even be managed remotely via mail.

Today’s bone marrow or blood stem cell transplant is no longer a high-risk procedure, saving lives that would otherwise be lost unnecessarily to these most common forms of cancer, said BMDP.

Once a search request is received, the search begins in Singapore and will extend around the world if required. The organisation received preliminary search requests for 174 patients last year, and found successful matches for 51 patients.

When a donor is confirmed as a patient match, BMDP makes sure he or she is fit and healthy to donate.

Last year, five local donors gave their bone marrow to patients in Singapore, as well as Hong Kong and the US.

yamadak@sph.com.sg

Source: Asiaone