6 cancer patients share what keeps them going

Having cancer is tough. Having cancer amidst COVID-19 and MCO is even tougher. We asked 6 breast cancer patients what keeps them going. These are their stories.

*Patients are part of our Patient Navigation Programme, a collaboration between Cancer Research Malaysia, the Ministry of Health, doctors, nurses, and community partners, to improve survivorship – by helping underprivileged breast cancer patients get timely diagnosis and treatment. Patients’ identities are kept anonymous for privacy.

Madam S*, 51, unemployed. Diagnosed with breast cancer in 2018. Completed mastectomy, chemotherapy, radiation and targeted therapy.

“My world crumbled when I received the bad news – I had cancer in my right breast.

MCO was a time of extreme turbulence for me, as my son was the sole breadwinner of the family. It was really hard. Food was scarce due to financial hiccups. When I felt like giving up, I prayed, and help knocked on my door in the form of the patient navigators, hospital nurses, and medical officer.

When I saw only darkness, they were the light. I am indeed grateful for the groceries, food, and financial help from the Kebajikan, which played a crucial role in our survival during MCO.”

Puan M*, 64, third time battling cancer. First diagnosed with breast cancer in 2001, currently undergoing treatment.

“I was diagnosed with breast cancer in 2001. I felt very down, scared and depressed, like it was the end of my life. Unfortunately, I had a recurrence in 2012, in my chest wall and lymph node. Again, God tested me in 2019 when I was diagnosed with cancer in my chest wall.

The doctors and nurses gave me a lot of support, they gave me advice on how to take care of myself at home, what food is best for me.”

F*, 56, single, unemployed, and living with her elderly mother. Newly diagnosed with breast cancer in March 2020 before MCO, waiting to start chemotherapy.

“It was quite challenging to go to the hospital as I need to cross the state and paying for taxis is expensive. The navigator helped me with information on how to get financial benefits from the government, which I received. They were also helpful in answering all my questions about breast cancer so I can make an informed decision.”

A*, 56, retired, has good family support. Diagnosed with breast cancer in October 2019. Completed surgery and chemotherapy, waiting for next CT scan.

“I was going through chemotherapy during MCO. It was hard as my white blood cells kept dropping, and I started losing my teeth, one after another. I tried to constrain myself from going out. One of my children had to be quarantined; I couldn’t see her. The navigator visited me in the ward when I was admitted for fever, and called me during MCO. They made me feel that there’s so much love around, there are still people caring for me. It is a nice feeling.”

Puan R*, 46, unemployed and on government aid. Diagnosed with breast cancer in Oct 2019, had a mastectomy in March 2020.

“After a mammogram and biopsy, I was told I had breast cancer. I was really, really down. I did not know what to do, whom to talk to. I cried a lot. Prayed a lot. My sister was good moral support.

My husband was a lorry driver. He is a very sickly person with asthma, so very often he will be on MC. Getting a job was difficult, I used to earn some money by making cakes for a nearby stall. My children all left school after SPM. We went through tough times making ends meet. Through the doctor, I applied for Jabatan Kebajikan Masyarakat aid. Now I get RM200 monthly. Things are getting better slowly.

In 2019 I met a patient navigator. She understood me. I was able to talk to her. I looked forward to meeting her during every appointment. She gave me tips to talk to my children to help with the financial difficulties. My son and daughter took up jobs as sales personnel in a shopping mall, they take care of my housing loan. My eldest son who moved out to work in KL takes care of my utility bills.

She arranged for an interview with the Kebajikan officer to waive some of my hospital bills. She helped with MySalam application and it got approved. Now I can cope with paying for transport to the hospital, and ward admissions. She also arranged for food baskets from the Kebajikan during MCO which was a big relief. The patient navigators constantly keep in touch. The very thought that someone is taking lots of effort for my welfare and well-being keeps me motivated and feeling fortunate. It is a great feeling.”

Madam G*, 37, unemployed single mother. Diagnosed with breast cancer in March 2019. Completed mastectomy, chemotherapy and radiotherapy.

“I married very young at 18 years old. It was failure after 7 years with one child. I remarried, but he too walked out on hearing that I have cancer. I was diagnosed with breast cancer on 6 March 2019. In 3 days, my mastectomy was scheduled.  After that, I had 6 cycles of chemotherapy and 5 cycles of radiotherapy.

My future looked very gloomy and unstable. My girl who is only 14 years old walked out on me too, and ended up at a relative’s house. My family bricks were falling apart. I cried a lot, called all known gods’ names for help. My only consolation is my 10-year-old son.

I met a patient navigator during one of my visits to the hospital. First I was a bit reluctant to answer all her questions. At the end of the session I did feel a little relieved. Then during every visit, I was looking for her, I wanted her to talk to me.

I had just moved into my new apartment, desperately wanting to turn over a new leaf. Then MCO came. I had not started work. I borrowed money for down payment on my new home, unfurnished and empty. I completely lost direction.

Then the patient navigators called me to find out how I am managing. One navigator said, ‘Your Bantuan Prihatin will come soon. Settle your down payment. Don’t worry about furniture. I am sending someone to help you and guide you.’ A community partner came and gave me some cash to buy what I needed most. An officer delivered a food basket. With their guidance I applied for the Kebajikan bantuan. I am really feeling more confident now. At least now I can double check my decisions in life.”

***

Many cancer patients from low-income households face barriers such as lack of access to medical information, late stage discovery or presentation, as well as financial and logistical challenges. In the past, 1 in 7 patients would drop out of treatment.

Our Patient Navigation Programme has made leaps and bounds in this aspect, as nurses and navigators work closely with patients, hospitals, public services, and the community, to identify gaps and implement practical interventions to improve timelines and ultimately survivorship.

By helping them overcome these barriers to timely diagnosis and treatment, half of breast cancer deaths in Malaysia could be prevented. This model support system has been replicated in 4 different states, with plans to expand to more hospitals nationwide.

Cancer Research Malaysia is calling for public support to help its Patient Navigation Programme drive lifesaving action, and together with the Ministry of Health, improve cancer survival rates across Malaysia.