Patient Stories

Belinda Wagner: determined as ever

July 29, 2020 Word for Word Media 0Comment

We hear how Belinda Wagner, a life coach, facilitator, lecturer and marketing consultant, ensured her diagnosis of angiosarcoma would not take control of her life.


Belinda Wagner (48) lives in Fourways, Gauteng. She is married with two daughters, aged 18 and 14.

Diagnosis

It took six months for doctors to diagnose Belinda with angiosarcoma. It started in July 2016 when Belinda got bronchitis. In August, she started coughing up blood, had an overall feeling of not being well, and had abdominal pain. 

Medication was prescribed for her chest and coughing which was followed by an array of tests, until a CT scan, in November, showed growths in her abdomen and chest, with lesions on her lungs. The growth in her chest was originally misdiagnosed as organising pneumonia.

Biopsies were done which led Belinda to undergo surgical removal of the growth in her abdomen; it turned out to be a cyst that had erupted. 

A lung operation was scheduled to remove that growth. However, due to more internal bleeding it was cancelled. Instead more scans were done and it was decided a hysterectomy was the best course of action. 

The hysterectomy took place in November 2016 and the results from the tissue removed diagnosed Belinda with angiosarcoma, which had started in her endometrial area.

Treatment

Two weeks after the hysterectomy, Belinda started chemotherapy. After the second session, she met her pulmonologist and he was happy with the progress as there was remarkable improvement in her chest. 

Though at this stage, Belinda was experiencing pain in her left lower groin. After examination, it showed to be a lesion that couldn’t be removed during the hysterectomy. Two weeks of radiation was prescribed.

Once radiation was completed, Belinda continued chemotherapy, in March 2017; this time a combination of Gemzar and docetaxel, until June. 

She was then prescribed propranolol, an oral tablet originally used for treatment of high blood pressure, that has recently proven to reduce the spread of angiosarcoma.

Second opinion

Even though Belinda’s treatment was successful, it didn’t remove all the cancer tumours and she developed an abdominal hernia. 

She explains, “When my oncologist suggested I think about having another course of chemotherapy, I realised that I didn’t really know much about my condition so I started researching. 

I found a support group on Facebook that informed me that there are eight specialist sarcoma clinics in the UK. Since angiosarcoma was so rare, I decided to go to London for a second opinion.”

“I first had a telephonic consult with the London oncologist. He advised me not to have any more chemotherapy as my body needed to recover. He was then put in touch with my local oncologist and guided her through the best course of action.” 

London consults

Belinda travelled to London in August 2017 for her first face to face consult. 

All her scans were done locally and the results were couriered to London for the multi-disciplinary team to review and weigh in on.

Her second visit to London was in July 2018 where it was decided that surgery was crucial as angiosarcoma is extremely aggressive and there was a high-risk of the cancer spreading. 

The operation consisted of a peritonectomy with resection of residual angiosarcoma and repair of incisional hernias, stenting of bilateral ureters to remove the remaining tumours.

The next hurdle was getting her medical aid scheme to pay for the treatment in London. As determined as always, Belinda motivated for it for nine months and personally visited the CEO to get it approved. In the end, her medical aid paid for 80% of the treatment in London.

In May 2019, Belinda flew to London to have the surgery which took four and a half hours. “The London team were impressed at my remarkable recovery and success of the operation. The surgeon mentioned that he had not seen this recovery in his 20 years of surgery. I had 68 staples so had to stay in London for five weeks before I could fly back home,” Belinda explains.

Thriving at work

Hearing all that Belinda has been through, one would think that her career of life coaching, marketing consultant, facilitator and lecturing would have taken a knock. But it didn’t, it proved to push her to greater heights. 

“I knew that work was the one thing that would keep me sane, having a purpose and not let cancer own me, or stop me from living. During treatment, the side effects of chemotherapy and radiation made it challenging to work. However, I continued to work when I could.”

“Having cancer has given me a total different perspective on life, I often use my own story as an example for others in my life coaching and to the students I engage with,” Belinda says.

One of the many things Belinda can be proud of is that she managed to present her doctorate proposal, which took two years to prepare, all while undergoing treatment. 

When asked if the treatment overseas interfered with work, she responds, “Yes and no. I continued to do online contact work, marking, working on my doctorate but I certainly lost out on faculty work (days in class room) and coaching face to face.”

Living with Cancer NGO

Going through this journey also prompted Belinda to start a second NGO, in 2019, Living with Cancer. The first being Diamonds Women’s Network, a support network for women in small business.

Living with Cancer provides support and hope to cancer patients and survivors. The support group has been running since 2017 with added digital support of an open and closed Facebook page as well as a website.

Currently, Living with Cancer is in the process of developing a patient-led cancer registry (mobile accessible); Altron Karabina is the technology partner. The aim is for record keeping and tracking of all cancers across South Africa. Once the registry is running, CANSA will help create awareness. 

Current health

The life coach says she feels the best she has since being diagnosed in 2016. “Medically speaking, there are still remaining tumours in my body, however, they are inactive. I still take propranolol (and will have to for the rest of my life), and go for regular CT scans here in SA that are then sent to London.” 

“Even though my cancer is inactive, once you’re diagnosed you live with fear that it will return. What I have tried to do is focus on living today, making each day count. I don’t regret getting cancer. 

It has given me an appreciation for small things in life. It has taught me to value each day and, mostly, I have realised the importance of living the ‘most authentic you’ possible. We spend our lives trying to please others and be perfect, I learnt a saying a while ago 

“Live life, don’t do life” and that’s what I do: live.”

Images by Studio Images Photography 

Laurelle Williams

MEET OUR EDITOR – Laurelle Williams


Laurelle is the Editor at Word for Word Media and graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She have a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Write me: [email protected]


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