We share our stories to give hope

Efia Akese Life Nov - 25 - 2022 , 10:55 5 minutes read

Throughout October, a number of breast cancer survivors joined the month-long awareness campaigns and shared their stories on different platforms.

According to one of the active advocates, Mrs Susan Tsotsoo Malik, the decision to share their difficult journeys is to give hope to other families going through similar circumstances.

She said in her early days of diagnosis, she opened up on her condition so she could get all the help she needed medically, spiritually and emotionally.

“Most of the time when I start talking about my journey especially to newly diagnosed patients, they assume I am telling stories but when I show them the scars from my surgery, I see their face light up a bit as they know they can also go through treatment and survive,” she explained.

Another reason, she added, was to encourage many people, including men, to get their breasts screened by professionals regularly as that was the only way to detect the disease early, adding that “if I had the information I am giving out now three years ago, I wouldn’t have been in the situation I found myself in.”

Mrs Susan Tsotsoo Malik is the founder of the MaudLokko Breast Cancer Foundation

Mrs Malik, who is the founder of the MaudLokko Breast Cancer Foundation, a non-governmental organisation established to assist women living with breast cancer, said she was excited to see a number of survivors embarking on campaigns to educate the public as they understand the condition and can share real life experiences.

She attributed the increase in the number of breast cancer related deaths to late diagnosis. She explained that most women reported to health facilities late after diagnosis because they attributed the disease to evil attacks

“I am a very spiritual person. I am a Presbyterian and my husband is a Muslim. The day I told him about my diagnosis, the first thing he said was “we must pray.”

I always emphasise spirituality because a lot of women are dying because they assume it is the churches and spiritual centres that have the solution. That is not the case. The solution is you. It’s in your faith and believing in God to heal you through a medical expert and not at these centres,” she explained.

She added: “My church leaders found out, they wanted to find a way so people didn’t hear about my condition but I told them to let them know all the details so they pray with me for healing. I did all these while I was still receiving treatment at the hospital.”

Effects of cancer
Mrs Malik recounted that the effects of the treatment process (mastectomy, chemotherapy and radiotherapy) were dire with some changing her current lifestyle.

She recounted that during chemotherapy, she had recurrent rashes, loss of finger nails and some of her senses, darkening patches and other effects.

She said currently, she had become dependent on people to do household chores such as cooking following a complication in her hands during surgery.

“My skin has also become resistant to any pain relief balm no matter how hot it is; it feels like I am pouring water on my skin.”

When it comes to diet, however, she said she had already changed her diet prior to being diagnosed so she didn’t struggle with the dietary requirement.

She said treatment for breast cancer and after care was not cheap so some women started the treatment and stopped halfway through.

The foundation supports women diagnosed with the disease

According to her, most women could also not afford the cost of mastectomy brassieres and breast prosthesis (an artificial breast form that replaces the shape of all or part of the breast that has been removed).

To support such women, her foundation makes and shares breast enhancer pads.

The foundation makes and shares these breast enhancer pads to women who can’t afford breast prosthesis

Advocacy
Mrs Malik said when she started her advocacy, the focus was on providing support for women diagnosed with the disease.

She said, however that, between 2019 till date, they had lost over 70 women. Most of these women, she explained, had recurrence a few years after treatment.

She said the foundation had started advocating that people who had been through the treatment to continue looking out for signs and attend all reviews.

“After the process, some assume that’s it so they stop taking their medication and live like they used to before. We want them to understand that even after five years in remission when it is assumed that you are completely cancer free, you must be mindful of certain lifestyle changes so the disease doesn’t recur.”

Throughout October she was part of different sensitization campaigns on breast cancer

“We also continue to encourage people to get screened and this is not targeted at only women. On the day I had the surgery to remove my breast, there were nine of us and two were men. As we continue telling women to check their breasts, we should encourage the men as well,” she advised.