Living with cancer

By RUBIN KHOO

Dee Sidhu ... 'The nature of this centre is complementary to inform you of your choices.'

ONE can only imagine the kinds of emotions that a patient diagnosed with cancer has to cope with. “Am I going to die?”, “What treatment options do I have?”, “How will I cope?” These are just some of the issues that the individual has to work through while at the same time being plagued with feelings of fear and uncertainty.  

It is a traumatic event not just for the person but also for the family and carers. And despite it being a major cause of death, there are few avenues that a person inflicted with this illness can turn to for support.  

With this in mind, the National Cancer Society of Malaysia (NCSM) recently initiated the start of its Resource and Wellness Centre. The aim of the centre – to empower individuals by equipping them with the necessary support and information as guiding tools for a person diagnosed with cancer. 

“This centre is about empowering people,” says Dee Sidhu, executive director of the centre. “And the nature of this centre is complementary, to inform you of your choices. There are really very few places to go to for information, but a lot of people need to know what is available to them.” 

It is important to recognise, she stresses, that a cancer patient is not just infected, but is affected as well. And it isn’t just the patients themselves that are affected but the caregivers also. Most people, she adds, don’t know what to do because they do not know what they are dealing with.  

“That is why education is our main thrust,” says the centre’s director of communications Christine Edwards. “So we are starting programmes to go out into the community. 

“There is a greater awareness of breast cancer, but even then, many are not aware of how to conduct self-examinations or of the need for regular screenings. But the fact that you can even mention breast cancer is a reflection that breast cancer awareness has come a long way. But what about cancers like testicular cancer, lung cancer and cervical cancer?” 

However, apart from just creating awareness, the education programmes, she says, are about empowering patients to come to a decision about what they want to do. And a large part of this involves demystifying the fears that come with cancer. For example, most people, she says, have a fear of chemotherapy which arises largely because most people do not know how it works and what are the processes involved. These kinds of fears, however, can be removed with awareness.  

Nonetheless, those of us who have come into contact with cancer know only too well that this is easier said than done. The directors at the centre, however, are fully aware of this and it is perhaps this added awareness that makes this cancer centre different. The environment is a cheery and non-threatening one. This in itself, they believe, will go a long way in enabling patients who are seeking information to come forward. 

“We want people to come here and be comfortable,” says Sidhu. “So it’s not a clinical situation but a homely and non-threatening environment. I mean a lot of patients need support – but where do you go? In most societies, you depend on your doctor but most of the time, doctors don’t have the time.” 

Support is indeed a key issue, and thus, the centre provides a counselling service by trained counsellors, who can help identify strategies to deal with feelings of fear and confusion. It also has a peer support programme that will put a patient in touch with someone else in a similar situation.  

They believe that it is essential to address the needs of the person. The centre, therefore, also offers self-help and healing services, which aim to address the pain and stress of cancer patients and their caregivers. Hence, the centre is currently running classes like yoga, qigong and meditation and relaxation along with complementary therapies like massage and aromatherapy.  

“The main reason for this is that doctors often treat the illness but not the person,” explains Sidhu, a nutritionist who conducts the nutrition classes for cancer patients. “But when someone receives a diagnosis, the whole person becomes distressed. This approach looks after the whole person.  

“If someone came in angry or distressed, these complementary therapies like yoga and meditation would perhaps help them cope better. Our hope is that this would make the journey easier for them.” 

The NCSM is also spearheading the establishment of a national cancer coalition, which will encompass all relevant organisations from different disciplines and sectors, which will ultimately enable the best use of resources for the implementation of disease control strategies. Prevention is thus imperative, particularly as the profile of cancer patients is expected to change in the next 10 years.  

“The incidence is on the rise in Asian countries,” says the centre’s executive director Dr Saunthari Somasundaram. “With the change of lifestyle, we are fast approaching the same sort of statistics that is currently being reported in developed countries. We have to start doing something now.” 

About a third of cancers, Dr Saunthari says, can be prevented, and thus, prevention is a major part of the programmes. Going out is thus a significant aspect of its programmes. Talks can be conducted at schools, higher institutes of education, companies and other requested locations. But the resources of the centre are also available to anyone who wishes to learn more about cancer.  

The information provided is across the board and as a result, they do not focus on any one cancer. Instead, they are currently in the process of putting together a comprehensive database that gives adequate information on each of the 24 main cancers.  

Also being prepared is a list of recommended websites. The centre is currently in the process of reviewing more than 700 websites to try and identify the most useful sites. But making sense of the information can also be a problem, and as a result, many find it difficult to fully comprehend the technical details. To overcome this, they are also preparing a list for patients or their caregivers that will contain questions to ask their doctors.  

Their plans are ambitious and it is for this reason that the centre is actively seeking volunteers to assist them in their many activities. You can be skilled in anything, says Edwards. Help is basically needed to help with everything from administration and fundraising to peer support groups, updating the website and educational material and so on. By getting more volunteers involved, they also hope to spread the word regarding the services offered by the centre.  

The Resource and Wellness Centre is located at The National Cancer Society of Malaysia, 66, Jalan Raja Muda Abdul Aziz, KL. For information, call 03-2698 7300, fax [phone] or e-mail [e-mail] . Those who are keen on volunteering can e-mail [e-mail] for further information.