Given five years to live, Belinda survives rare cancer and now supports others with cancer

In December 2016, Belinda Wagner was diagnosed with angiosarcoma, a rare cancer that forms in the lining of blood vessels.

"My symptoms started that winter in the form of a cough that didn't go away. Then I started experiencing body aches and pain in my abdominal area. A CT scan showed tumours in my body that doctors at the time said weren't cancerous," explains Belinda.

Despite this, Belinda's symptoms worsened. "My body swelled up after a core biopsy. I would lie on the floor to try and cool my body down. I was eventually taken to hospital where I fainted. I had internal bleeding and had half of the blood supply that a person normally has." What followed was a surgery to clean out the blood in Belinda's abdomen.

"I decided that regardless of what happened, I was going to live."

"On 2 December 2016, after six months of being ill, I was told that I had angiosarcoma. This cancer is very difficult to detect. It often emerges when something foreign in the body triggers it - in my case, I think it was my IUD."

"My chest and abdomen were filled with masses and my oncologist, Professor Georgia Demetriou, told me that my cancer was very aggressive and that we had to start treatment immediately. I was put on four different types of chemotherapy."

"Although my diagnosis was very scary, I knew I was going to fight this. One source of comfort to me was a podcast by the American author and surgeon, Dr Bernie Siegel. In it, he said that when you're ill, you need to decide whether you are going to live or die. In that moment I decided that regardless of what happened, I was going to live."

"I would visualise my future and imagine one day having granddaughters who would run through fields with flowers in their hair. That thought would keep me going."

Belinda, a Discovery Health Medical Scheme member, also received support from the Scheme. "From my very first encounter with Discovery Health, I was treated so kindly. The oncology department were very empathetic at a time when I was afraid and didn't know what to do."

• Discovery Health members have comprehensive cover for cancer. Read more about the Oncology Care Programme.

"Everyone around me was ill and dying. It was scary."

Despite being very weak, Belinda's doctors allowed her to go on holiday to Durban after her first round of chemotherapy. "I started losing my hair on holiday and it was the most disheartening process. When the wind blew, hair would fly off my head. I did get a wig, but it just wasn't practical. I found the wig more depressing than not having a wig, so I gave it away. I learnt to deal with wearing a bandana on my head. I had lost so much weight and was very skinny and ill - it felt like everyone was staring at me. It was very hard."

While in Durban, a painful haematoma (blood that collects around large blood vessels) in Belinda's groin had to be treated by a local doctor. Belinda's treatments are complicated because she is allergic to some of the most common painkiller ingredients.

"After our holiday, I had my second round of chemo. It turns out I was allergic to that type of chemo. I was shaking and in pain. I lost all feeling in the bottom part of my body. I felt like I was dying." Belinda then went on to have daily radiation for two weeks. "I vomited all the time. By the second week, I couldn't drive myself there and back. The other people who were there for treatment were very ill and dying. It was scary."

Throughout her illness, Belinda carried on working, teaching at business schools. She also wrote and had her PhD proposal accepted.

Belinda flies to London for surgery

Because angiosarcoma is so rare, Belinda struggled to find information and support related to her illness. "I found an international angiosarcoma support group on Facebook. Through this group I heard about an angiosarcoma specialist, Dr Vasilios Karavasilis, in London. I eventually flew to London to meet with him."

Belinda continued to research and gather information about the best treatment options for her rare condition. "For nine months, I went back and forth, speaking to specialists in the UK and US. I took all this information straight to Dr Jonathon Bloomberg, who was the CEO of Discovery Health at the time, to try and get approval for surgery in London."

"By 2019, an oncologist in London said I needed to be operated on within the next three months if we wanted a good outcome. We applied for a second bond on our house to be able to afford the six weeks' stay in London and the R1 million treatment."

"As I landed in London in June 2019, I got a message to say that Discovery Health would cover the surgery. I was so relieved!"

"I had 68 staples and 100 stitches."

"I had five specialists operate on me for more than four-and-a-half hours. The surgery was successful. They removed most of the tumours in my abdomen and repaired a hernia. I had 68 staples closing the incision from my bra all the way to the bottom of my stomach. And they used 100 stitches for the mesh that was used to repair my hernia."

"Ten days later, the first lot of staples were removed. I was walking the streets of London, shopping. The surgeons were surprised by how well I was doing. They said it was like I'd never been operated on."

Belinda returns home and bounces back

"The next month, in July 2019, I was back in South Africa and feeling much better."

"Initially I had to go for PET and CT scans every three months and then every six months to check for tumours. I've now been told that from March 2023 I can go for X-rays and ultrasounds every six months and for CT scans every twelve months. I still have some tumours, but they aren't active."

"Cancer is something you live with for the rest of your life. It's an emotional ride. Luckily, I have a very good therapist who supports me and helps me to navigate the journey."

"I keep very active and I'm feeling strong again. I row for 45 minutes twice a week and do Pilates twice a week. I started doing the weekly Parkruns in 2017 and I'm now on my 78th one! Back then, it would take me two hours just to walk 5 km. I even got Vitality to lower my point goal to make it more realistic to achieve, given my condition. I've also done the 10 km Knysna Night Run."

"I got a beautiful tattoo of a feather along the 30 cm scar on my abdomen. The feather represents a warrior because I believe we are cancer warriors. It also represents the wings of an eagle from a Bible verse that talks about how the Lord will renew our strength and we will soar on wings like eagles. That's because I couldn't have done this without my faith."

"I survived to be able to contribute to the cancer world in SA."

"I was given five years to live but look at me now! Cancer fundamentally changed who I am. I now see life differently. I live life to the fullest and I speak my mind. I feel like I survived to be able to contribute to the cancer world in South Africa," says Belinda.

And making valuable contributions to the cancer world is exactly what Belinda does. "Cancer is a very lonely journey, so I started a support group. Everyone in the group has or had cancer and we give guidance to each other based on our own experiences. Everyone is confident to share stories and ask questions. It's a kind and safe space."

Belinda also started the first patient-led cancer registry called Living with Cancer SA. "South Africa's national cancer registry was last updated in 2016. So I started a patient-led cancer registry. It's important to collect this data so that government and healthcare institutions can understand the number of occurrences of cancer in our country and make decisions about the distribution of resources when it comes to cancer treatment."

Belinda also encourages people to go for their annual preventative screenings to check for any life-threatening conditions. "Screening is the key to everything. Your chances of survival are much better if diseases like cancer are diagnosed early. If the first doctors I went to had screened me from top to bottom, my cancer may have been picked up sooner and perhaps the treatment would've been easier."

• Visit the Discovery Health Oncology Hub for information and resources to help you understand cancer, how it is treated, and how the Discovery Health Medical Scheme covers cancer treatment.