When you are young, you believe that you are immortal; death is merely an intellectual concept that only needs to be dealt with in the far distant future.
Then you get struck with cancer, and death comes so close that it becomes an intimate friend.
But thanks to a combination of excellent treatment, strong will and good fortune, death decides to retreat for a while, and suddenly, you have the rest of your life to live again.
But things can’t really go back to exactly the way they were before.
Now you have questions like “When do I tell the person I’m dating I had cancer”, “Should I tell my future employer that I’m in remission” and “How am I going to cope without insurance if I get sick again”.
Thyroid cancer patient Lavania Nagarajan has certainly contemplated the second question long enough.
The 23-year-old was 18 and working in a call centre when she was diagnosed with stage 2 thyroid cancer.
She had to undergo surgery to remove her entire thyroid, as well as radiotherapy to kill off the cancer cells that had spread to her lungs.
“After I got cancer, I had to take two weeks off because the radiation treatment was making me weak and I was experiencing side effects like hair loss etc.
“They didn’t allow me to take that much time off as they said it wasn’t fair for the other employees.
“So I told them I had cancer, and they asked me, ‘Why I didn’t tell them before?’
“Long story short, they asked me if I wanted to resign or receive a termination letter,” she shares.
Lavania has been unable to find permanent employment since.
Compounding her health problems is the fact that she has to wear a colostomy bag permanently due to being born with an imperforate anus, where there is no opening where the anus is suppose to be.
A colostomy is a surgery where a piece of the large intestine – the colon – is attached to an opening created in the abdomen wall to bypass the damaged section of the colon.
The person’s faeces is passed out through this opening and into a disposable colostomy bag attached to the abdomen.
Lavania admits that she doesn’t reveal she has a colostomy when she goes for job interviews.
“To be honest, every job I go for, I don’t tell about my colostomy, because I just feel that they won’t hire me.
“I’ve been for more than 10 interviews where I told them about my colostomy and no one hired me, especially the big companies,” she says.
However, she says that while she can hide her colostomy, she can’t hide the fact that she has cancer, especially if the job requires a medical check-up before hiring.
So, she subsists on contract work, usually lasting around a month at a time.
Aside from her basic living expenses, Lavania also needs to spend about RM500 a month on the various components of her colostomy bag.
Her mother, a health attendant in Hospital Kuala Lumpur, is her main supporter, both financially and emotionally. But her mother will be retiring this July.
The generally positive and confident Lavania breaks down only once during the interview, admitting that “she’s not okay”.
“It’s very, very difficult for me to cope with everything, especially as I’m very young,” she says in a quiet voice, dabbing tears from her eyes.
But she quickly recovers, pointing out that she’s a very active person.
“I can work, but (employers) just feel that for the cancer part, I have to go for treatment (and) I am weak, but I’m not like that, I am active,” she says.
Giving and getting support
While family and friends can certainly help a cancer patient handle their issues, sometimes, there’s no better listening ear and advice-giver than someone in your shoes.
Breast cancer survivor and mother of three Wan Musfirah Aimi Wan Supian (usually called Aimi) can certainly testify to both sides of that story.
The 33-year-old bank executive shares that her main emotional support during her cancer journey came from her husband and sons aged four, eight and 12.
In 2015, she underwent a mastectomy to remove her left breast and associated lymph nodes, high-grade chemotherapy to treat the cancer that had spread to her lungs, and immunotherapy.
“As a lady, of course, I feel very, very sad, and of course, I feel sorry for him (her husband Nik Mohd Yusoff Nik Jaafar, 38) as a husband to have an ‘alien’ wife like me with one breast.
“I feel so sorry because he’s young. He doesn’t deserve to have a ‘cacat’ wife like me,” she says, as her husband quickly interjects a “no lah”.
“I’m thankful for his support, that he doesn’t think my ‘weakness’ is important.
“He stays because of who I am, not what I do not have, so I’m really thankful for that.”
She also shares the tremendous support she received from her friends during her treatment.
“I always tell everyone who asks about my story, if I didn’t get cancer, I wouldn’t know these people loved me so much.
“When I had my surgery, half my room was filled with flowers, like a garden.
“Even friends whom I had not met for 10, 20 years came from Kelantan and (her home state) Terengganu to see me,” she says.
She adds that if she puts it in terms of percentage, “only 30% of my journey is the pain and the sickness; 70% is the happiness that I got from this journey”.
This is why she and her husband try their best to help other breast cancer patients and their care-takers who have asked for their advice on how to handle their cancer journey.
It started when Aimi was undergoing chemotherapy because, according to her, her fellow patients were amazed that she could get through the treatment quite easily and continue on almost as normal.
Even now, after being declared cancer-free, both she and Nik continue to be active in supporting breast cancer patients and their families.
Aimi says that the concerns shared with the two of them include the fear of getting tested, whether chemotherapy is painful, what to eat during treatment, and the do’s and don’ts of cancer treatment.
She shares: “I do not have any family history or friends with cancer, so I was very ‘blur’, very alone (at that time of diagnosis).
“I wished I had someone my age who could advise me at that point in time, but I didn’t have anybody.
“So, I hope I can help other people who have dilemmas like me when I first discovered I had cancer.”
She adds: “This also made it much easier for me to handle my sickness, because when I help people and see them happy, I am also happy.
“I always think that as a Muslim, I accept Allah giving me this sickness, because maybe Allah wants me to help other people.”
Supporting the young
Colorectal cancer survivor Dr Choo Mei Sze, 30, can empathise with Aimi’s feeling of being alone during her cancer diagnosis.
The host, emcee and holder of a doctorate in developmental psychology shares: “I think I’ve wanted to start a support group ever since I was going through the colostomy bag period when I was really feeling alone.”
She says that she just really wanted to speak to someone her age who had experienced the same thing at that time.
During Dr Choo’s first surgery to remove her rectum – where the tumour was located – and a small part of her colon, her blood pressure dropped too low for the procedure to be fully completed.
As such, instead of connecting her remaining colon to her anus, her surgeon had to create a temporary colostomy.
For the six weeks she had to wear the colostomy bag, Dr Choo felt very alone and confused, and even broke down twice, as her sensitive skin made it difficult for the bag to stick to her skin, often resulting in faeces spilling out onto her clothes and bed.
“That was when I thought, ‘When I get better, I’m going to start a youth support group’,” she says.
Eight months after she had been declared cancer-free, National Cancer Society Malaysia (NCSM) vice-president Clare Ratnasingham saw her at an event she was emceeing and offered her the position of NCSM Youth Ambassador.
Dr Choo says that she agreed to take the position only if she was allowed to start a support group for young cancer patients and survivors.
While there are general and disease-specific cancer support groups in Malaysia, the members tend to be middle-aged and above, reflecting the large majority of cancer patients and survivors in the country.
These older survivors are in a “different phase of life”, says Dr Choo.
“The concept behind the youth support group is that we are young. We want to do young things,” she says.
Among the sponsored activities she has organised are yoga, dance, soap-making and a work-out session.
In addition, the issues young cancer survivors face affect them more strongly because of their age.
For example, the inability to get medical insurance for the rest of their lives, the inability to find jobs despite being cancer-free, the fear of whether a partner will accept them, and for some women, the inability to have children due to their treatment.
“We started this youth support group in the middle of 2016, and our first meeting in July had quite a good turn-out, about 18 people,” she says.
However, that’s when the challenges started.
The attendance for the monthly support group meetings slowly started to dwindle.
“The last straw was when we had a gym session and only two people came. I was so sad and disappointed.
“I asked them, ‘What is the problem? Why do you think this is happening?’
“That was when they told me their parents actually asked them not to come.
“And that was when I realised other people’s parents were also telling them not to come.”
She suspects – and Aimi and Lavania wholeheartedly agree – that the reason is Asian taboos, where cancer patients are traditionally stigmatised due to their disease.
“The thing is, everyone is young, so although they want support, their parents keep telling them, don’t go.
“Their parents keep saying, ‘Why are you doing this? If you keep thinking about cancer all the time, you’ll get it again. You’re just being very negative, just stay away from all this stuff’,” Dr Choo says.
The irony is, she has many cancer patients asking her to start up a youth support group in Penang or Ipoh.
“I want to start it, but I can’t even get the KL one running well!” she says.
Dr Choo has no plans to give up though and hopes to start a group in Penang by the middle of the year.
Her current aim is to get advocates like the current cancer survivors in the group to get more people to come.
And her message to concerned parents is: “For families out there, we know you are trying to protect your child, but maybe not allowing them to join a support group is more detrimental because they themselves are also very confused – they need support from their peers, people who have gone through it themselves and are a similar age to them.”
Cancer survivors and patients aged 15-35 interested in joining the support group can look out for the next monthly meeting in Kuala Lumpur on facebook.com/nationalcancersocietymalaysia and facebook.com/choomeisze.