The NCCS nose cancer support group provides what no amount of medicine can – a listening ear, a helping hand and, when needed, a shoulder to cry on
In March last year, Ms Winnie Sim, 39, quit her marketing job when her 71-year-old father, Mr Sim Teng Juay, a retired senior clerk, got Stage 4 nasopharyngeal (nose) cancer. She knew it would be hard on her mother Mdm Ho Mew Wan, 70, a diabetic, to care for him alone and accompany him to his daily radiation and chemotherapy treatments. So she pitched in to help. “It was tough but he’s my dad,” she said. “I thought to myself that it might be the only battle we have to fight, so I wanted to give it my all.” She plunged into the task trying to find out as much as she could about the cancer. Then she did something which really helped – joining NCCS’ Nose Cancer Support Group.
Others in the same boat
Initially, she went to the meetings alone, as her father was too ill to attend. But she would go home and share everything with him. It made her realise that her family was not suffering alone – there were others, including many who recovered after treatment. “I learnt how they coped and survived. Before this, we didn’t know much about nose cancer, except that a distant relative had it.” She picked up tips on nutrition to reduce the side effects of treatment. “I learnt that lemongrass could help protect cells, so my Dad took a lemongrass drink every day before chemo. I heard that manuka honey soothes throats affected by radiation, so we gave that to him too.” She combined recipes to get the best effect, and went shopping for ingredients every day. “It was tiring but it helped, because he didn’t suffer much from chemo and so could continue with the treatment.” Recently, she learnt that, in eight or 10 Spotlight years’ time, her father might experience some hardening of the muscles, so he now sees a speech therapist and is learning simple exercises to delay its onset. “I wouldn’t have known about this if they hadn’t told me about it.” Her efforts have paid off. Mr Sim, who attended his first group support meeting almost a year after his diagnosis, is in the clear after treatment, with only his hearing and taste buds affected. “This group has made our battle with cancer and the journey to recovery easier, brighter and warmer. Without them, we’d be journeying alone in the darkness,” said Ms Sim.
Learning and sharing
Others have similar experiences. Mr James Chang, 44, a tax officer, was reeling from the diagnosis when Mr Teo Thiam Chye, 58 – the group’s leader and a nose cancer survivor himself – visited and reassured him. “I was worried and uncertain, but he went through the whole treatment process and shared his own journey with me. That night, I had my first good night’s sleep since the diagnosis. This group is not only useful but, here, I don’t feel alone,” said Mr Chang, who is a patient from another hospital.
A true blue support group
The group, which started in 2005 with 20 participants, now has about 300 – mostly survivors and a few caregivers. It also gets queries from other hospitals and even overseas. “We welcome everybody. This group has gone beyond nose cancer. We’ve got people with colon cancer, lymphoma, as well as head and neck cancer. They come because of the bonding,” said Mr Teo, affectionately known as TC – a name he prefers to use. Having walked the rocky road to recovery, TC sees it as a calling to help new patients, especially during the seven gruelling weeks of radiation and chemotherapy. “Our group’s motto is that nobody should journey alone with cancer.”
He said: “This is a true blue support group. There is warmth, closeness, commitment, information, support and friendship. Many people contribute to it. After our sessions end, people will hang around outside talking, sharing, laughing and making arrangements to meet up either individually or in smaller groups. “When a newcomer arrives, a few of us will spontaneously descend upon him. This is the bond that has been built up. Newcomers often feel down, and need encouragement and information. Nose cancer is one of the most treatable cancers, but it has many side effects which can be lifelong ones too, so we have to learn how to look after ourselves. Sharing our journey gives them hope, courage, confidence and, more importantly, information, so they won’t be confused.”
Some come to help
Among those who help at the sessions is Mr Ricky Chiu, 57, a former shop assistant, who had nose cancer when there were no support groups. He researched it intensively at the library and now shares his knowledge with newcomers. “We have to take care of ourselves, or risk a relapse.” His advice to them is to do simple exercises in the morning sunshine, control their diet and get enough rest and sleep. Another survivor who helps is a volunteer from the Cancer Prevention Society, Mr Roger See, 58. He had a small shop selling auto spare parts, but retired after getting cancer. “My life is quite calm now. As cancer patients, we practise the three As – accept, adopt, adjust. With these, you can overcome the obstacles.” Caregivers attend to provide moral support and learn how to take care of their loved ones. However, they have asked for a separate session to share their feelings more freely, and this is being organised. TC said wives, in particular, tend to suffer in silence. “She has to stay strong, look after him and the children and, sometimes, even suddenly become the breadwinner. She usually never says a word but may be found crying in the shower.”
From nutrition to handling fears
Talks by doctors and other healthcare professionals are usually held at the sessions, which have themes ranging from nutrition (a big topic) to handling fears and grief. There is usually no time for this at the clinic but, here, they get an hour of the doctor’s time and can also ask questions. Some common themes include relapse and the fear of death, said Dr Gilbert Fan, a medical social worker and Head, Department of Psychosocial Oncology, as well as Deputy Chair, Patient Support, NCCS. “In the early stages of cancer, discussions centre on going back to work and life after cancer.
In the advanced stage, it’s about the meaning of life, the journey, life goals and living your best. Acceptance and suffering are issues in all groups. Acceptance of a terminal illness is difficult. Some patients don’t mind death, but don’t want to suffer or be disabled,” said Dr Fan. He said all patients are confronted with the issue of death at the point of diagnosis. “When they recover, this goes away, but they are haunted by the possibility of a relapse. In the advanced stage, death is always there. They talk about it all the time – at meetings, in private conversations and with social workers. And each time, there’s a catharsis.” Dr Fan said when patients talk about death, it is usually about their wishes, and like a life review – how they want to die, what they want to do with their lives before they die, accomplishments yet to be achieved, unfulfilled wishes and regrets. “Those who know they are going to die don’t want to count the days. Some will, but the majority just want to live the best life they can. Many die courageously. Family members tell us that, compared to when they were first diagnosed, they were more cheerful and less distressed.”
SOME PATIENT SUPPORT GROUPS
Here are a few of the many groups within SingHealth
National Heart Centre Singapore (NHCS)
(Open to patients of NHCS)
- Cardiovascular Rehabilitation Patient Support Group
Tel: Nurse Manager in charge at 6436-7603
- Heart/Lung Transplant Patient Support Group
Tel: Transplant Coordinator at 6436-7635, email: firstname.lastname@example.org
- Pacemaker/ICD Patient Support Group
Tel: Ms Chiong Siau Chien Manager, Cardiac Lab at 6436-7867, email: email@example.com
National Cancer Centre Singapore (NCCS)
(Open to all cancer patients in Singapore)
- The Revival Connection (for patients with advanced and recurrent cancers)
- The Nasopharyngeal (Nose) Cancer Support Group
- The Mandarin Support Group (for Mandarin-speaking cancer patients)
- The Malay Support Group (for Malay cancer patients)
- The Lung Support Care Programme
- The Grief in Recovery Programme (for surviving spouses of cancer patients)
To contact the various support groups, call 6436-8126/6436-8117 or email
KK Women’s and Children’s Hospital (KKH)
(Open to members of the public)
- Perinatal Depression Support Group
Tel: 6394-2205 (8am to 5.30pm, Mon to Fri). Patients must be assessed for suitability before joining.
- Cleft and Craniofacial Support Group
Tel: Josephine Tan, coordinator, at 6394-5034/9100- 3978, email: Josephine.Tan.CH@ kkh.com.sg; tel: Aini Dahlan, Nurse Clinician, at 9180-0186, email: Aini. Dahlan@kkh.com.sg
- KK Alpine Blossoms Breast Cancer Support Group
Tel: Doris at 6394-5816; Breast Care Nurse at 8121-7943
Singapore General Hospital (SGH)
- Breast Cancer Support Group (open to patients from SGH and NCCS)
Tel: Mdm N Saraswathi at 6321-4474
- Haematology Support Group
There are separate support groups for patients with chronic myeloid leukaemia, multiple myeloma, thalassemia, haemophilia and myelodysplastic syndrome. Call Senior Nurse Manager or Nurse Clinician at the Haematology Centre at 6321-4722, who will link callers to the groups.
- Amputee Support Group (open to patients from SGH)
Tel: Sister Sivagame at 9842-8932; Sister Chew at 8119-0398
- Stroke Club and SGH Dementia Support Group (focusing on early dementia)
Tel: Nurse Diane at 9239-5907, email: theng.li.ping@ sgh.com.sg
Parkinsons Disease Support Group
Tel: Tan Siok Bee at 8125-3543, email: firstname.lastname@example.org
- The Colorectal Cancer Support Group (for all patients with colorectal cancer in Singapore)
Tel: Ms Carol Loi at 6321-3615, email: email@example.com or firstname.lastname@example.org
- Oncology Support Group (for cancer patients from SGH and NCCS)
Tel: Aw Fung Chee at 6321-4480, email: email@example.com; tel: Lee Teng Teng at 6321-4482, email: firstname.lastname@example.org
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