Mahani Kassim didn’t think she needed a cancer support group to get her through her diagnosis or treatment. She was diagnosed in May last year with triple negative breast cancer (an aggressive form of cancer which is harder to treat) after a routine mammogram alerted doctors of abnormalities in her left breast.

Mahani was shaken by the diagnosis but felt she was strong enough to cope with the disease on her own. She had tremendous support from family, close friends and doctors whom she trusted with her life. Why would she need a support group?

So when her close friend Lena Abdullah, president of breast cancer support group Pink Unity, invited her to join one of their sessions, Mahani reluctantly agreed.

“I went out of courtesy. She was a friend and I didn’t want to be impolite and refuse her invitation,” says Mahani. “My daughter tagged along but both of us were not expecting much. I was so wrong. That day changed my life.”

Empathy, Not Sympathy

Being among other survivors, it turned out, was exactly what Mahani needed.

“These were people who understood exactly what I was going through because they’d been through it too. Being with them, I felt as though a huge burden was lifted from my shoulders,” recalls Mahani, 54, who works with the Examinations Board in the Education Ministry.

She realised then that although she had a network of people who loved her, what she needed most was to be among people who shared the same pain, fears and frustrations.

“My friends were terrific. Some would cook for me while others would suggest food or therapies I should try based on what they had read. It was all out of concern, I know, but at the back of my mind, I couldn’t help thinking that they had no idea what I was going through. Some would visit me and cry, especially when they saw me bald from chemo. I’d end up trying to cheer them up! In their mind, I was dying and they felt sorry for me,” shares Mahani.

“It was different with the group of cancer survivors. They didn’t pity me; they empathised with me. I didn’t realise how much that meant. Here was a group of people with cancer and they could laugh and have fun, and also talk about death and their fears. It was real and very refreshing. Together, we laughed and cried during that first session and it felt good.”

“That day marked the start of my real survival. I started to believe I could live my life even with cancer.”

Mahani (in headscarf) with her family (L-R) Syariffudin Adli, Nur Amalina, Nor Yazmin, Shahrizal, and their cat Jamie. Photo: Mahani Kassim

Family Ties

Her daughter, Nur Amaliana Suhainy, who was her primary caregiver because they lived together, was also empowered by the group session.

“She cried and I cried, and it was really a relief for us. All this while I was getting a lot of support, but my children were the ones who had to rush around, taking me to my treatments in between their busy work schedules. They had to deal with the ups and downs of my treatment, see me suffer though chemo. They had no one to turn to,” says Mahani.

“But at the session, I saw relief on my daughter’s face. When she saw me laugh – real laughter, not the fake laughs I’d been giving people since I was diagnosed, her face lit up. When I’m with the Pink Unity ladies, she doesn’t worry about me.”

Dealing with cancer has not been easy but being among her peers helped her face the emotions that she had bottled up inside her.

“Joining the group made me realise I wasn’t as strong as I thought. I was just acting strong for my family. When I was alone I’d often break down and cry. I didn’t know how to deal with my emotions and they sometimes overwhelmed me. But among these women, I found I could express myself so freely,” she shares.

Support groups provide cancer survivors a safe space to express their fears and emotions, explains National Cancer Society Malaysia’s (NCSM) Resource and Wellness Centre head, Adeline Joseph.

“Because peer support group sessions are private and confidential, patients and survivors feel they have a safe space to share. This is especially great for people who don’t want to further burden their family or caregivers,” says Adeline.

“In Mahani’s case, while she had strong support from everyone around her, she still felt the need to put on a brave front. Long term survivors in such support groups also inspire new patients as they show you can fight cancer and lead a normal life after cancer.”

Joining Pink Unity changed Mahani’s perspective on cancer. Photo: The Star/Ibrahim Mokhtar

Empowered By Knowledge

It’s been more than a year since Mahani joined Pink Unity. She completed her chemotherapy and radiotherapy sessions almost a year ago. Just recently, however, she found another lump in her right breast.

“The tests came back negative but my surgeons have recommended that I remove the lump anyway. Initial tests for my first lump were negative too. But when they removed and tested it, the doctors found that I had an aggressive form of cancer,” she shares.

This time, she feels she is more prepared to go through the surgery, whatever the outcome may be. “When I was diagnosed last year, I didn’t know anything about cancer. No one in my immediate family had cancer and so I had no idea how it affected someone. I was going in blind,” says Mahani.

“People came to me with all kinds of information and solutions. Some urged me to try alternative treatments although that is something I would never want to do. I was also clueless about the many myths about curing cancer. Now I know better. I have real knowledge and insights from the group.”

The feisty mother of three is now a strong advocate for support groups like Pink Unity. Whenever she meets a fellow breast cancer patient, Mahani shares her experiences with them so that they too will benefit from leaning on peer support.

“I know, sometimes we think why do we need to join a group and do activities like painting, dancing, yoga. What does all that have to do with cancer? But you’d be surprised. “When I was at home on my own, all I used to think about was my cancer,” she says.

“These activities help take a patient’s mind off their cancer, and have fun. It makes a huge difference, to be able to laugh and forget for even a few hours that you are sick.”

Related story: Time to bring support services for breast cancer patients to rural areas