Mother of two, Margo van Heerden, shares how her employer gave the utmost support when she was diagnosed with synovial sarcoma and helped her to be put on permanent disability.
Margo van Heerden (36) is married to Geo. They live in Sasolburg, Free State and have two children, Jonathan (6) and Josslyn (2).
Synovial sarcoma
It all started in January 2018 with the words, “You have sarcoma.” I’d never heard of sarcoma before. I asked, “So, it’s not cancer?” The doctor explained it is cancer. A type of soft tissue cancer: synovial sarcoma which is extremely rare.
I was six months pregnant when a lump on my shoulder appeared. I left it as I thought it was a stubborn muscle spasm, caused by a previous injury, pregnancy hormones and stress.
When my physiotherapist sent me for an ultrasound and X-rays a few months later, I was frightened, but never did I think it’s cancer.
Within days, an orthopaedic surgeon removed the 10cm tumour. Recovery was difficult. I couldn’t even wash my own hair, never mind look after a two-month-old baby. My mother-in-law flew to Gauteng to help me and look after my kids.
Diagnosed while on maternity leave
I had been an administrator within the company I worked for around 12 years. I was on maternity leave when I was diagnosed. The company had a great maternity leave benefit: six months of maternity leave: two months fully paid salary, and four months’ partial salary, with UIF top up.
I also had a dreaded disease policy which paid out a lump sum, which helped to settle bills, etc. I never thought I would need the policy, but I’m happy that I had the good sense to have sufficient life insurance.
Complications
I was meant to start 30 sessions of radiation a month after surgery, but my wound got infected quite badly. Dead tissue was removed, leaving me with a large hole in my neck/shoulder area.
A wound vac was put on to help it heal quicker. Within a month, the large hole was mostly closed, only the skin had to grow. Every time we stopped wound therapy, my wound regressed.
Three months after initial surgery, I started radiation with the wound vac on. At this stage, my maternity leave was over, and my oncologist booked me off for a month to complete treatment.
The radiation machine at my local oncology unit was out of order, so I travelled to an oncology unit in Lenasia every day.
After radiation was completed, I had a skin graft. There was only a 50% success rate of it taking after radiation. Thankfully, the graft took and the skin finally grew. I was elated that this chapter was finally over and that I could return to work.
Classified as Stage 4
Before returning to work, I had a CT scan. I was shattered when a 1cm nodule was found in my left lung. I was now classified as Stage 4. It sounded like a death sentence to me but I was ready to fight, again.
I was referred to a cardiothoracic surgeon. He was optimistic that he could attain clear margins. I had the painful surgery; it confirmed metastasis. Thankfully, the healing process went well.
A month later, I started with MAID (mesna, Adriamycin, ifosfamide and dacarbazine) chemo regimen. It was brutal, but I made it through without issues.
Temporary disability
My manager, who was so supportive, immediately started the process to place me on temporary disability when he heard about the spread to my lung. He did this as he knew my sick leave wouldn’t be enough, and he also didn’t want me to work during treatment. I had six months’ leave with full pay. To this day, I’m immensely thankful to the wonderful company I worked for.
The last session of chemo was in November 2018, and I was scheduled to start working again in January 2019. I was so excited to work again. In total, I had spent 15 months at home.
The weeks I had chemo, my sister would stay with us to help me with my kids so that I could recover. My family have been such a blessing. My mother always made sure I wasn’t alone when I had an appointment or treatment.
The scans came back clear in January 2019. I officially had no evidence of disease (NED). Finally, I had my life back. I appreciated life much more than pre-cancer. I was so happy to be alive and healthy again.
In March, I went for my three-month scan. A suspicious lesion was found in my shoulder. It turned out to be benign. Life slowly returned to normal. My hair was growing back beautifully. Life was just great!
Spread to mouth
Since 2018, I had a broken molar tooth. In July 2019, I finally went to a dentist to get it fixed. He did a root canal and fixed the tooth. After that my gum swelled up. Most people explained that swelling was normal after a root canal, so I wasn’t too concerned.
It was time for my three-month scan. Yet again a suspicious lesion was found in my shoulder. I was scheduled for PET scan in August to see if it’s a recurrence.
In the meantime, an ugly lesion started to develop in my mouth. I went back to the dentist to find out if it’s an infection. He had no idea what it was, and referred me to an oral surgeon. The oral surgeon was quite concerned when he saw it, especially with my history of cancer. He cut out a part of it to have it biopsied. Not even a week later he confirmed that it’s cancer. My cancer had spread to my mouth. I was shocked and felt numb. I didn’t want to fight again. All I wanted was to live my life, a normal life.
Later, the PET scan revealed multiple metastases: lungs, liver, shoulder, and gums. Within three months, I had gone from cancer free to cancer ridden. How is this even possible? How can it grow so quickly, especially after going through the most brutal chemo?
Permanent disability
A new chemo regime was planned: Gemzar and Eriox. I was booked off from work for two months, the last remaining sick leave I had.
My oncologist suggested that it’s time that I was put on permanent disability, so I could focus on myself and not worry about work.
My work approved the permanent disability and medically boarded me. The disability cover my company had for me paid out a lump sum. I was kept on their medical aid, though I now pay for it. If I had changed medical aids, I would have had waiting periods.I’m thankful that I worked for such an amazing company that looks after its employees. I was sad to leave, but I’m grateful that I can focus on my family and health.
My personal life insurance also paid out a lump sum for the permanent disability, and I receive a monthly pension from my policy. So, financial stress is thankfully not an issue.
Ongoing treatment
After two cycles of the new chemo regime, the tumour in my mouth continued growing. I went for a second opinion, and I started Votrient, a targeted therapy, two tablets daily. The side effects aren’t too bad, it turned all my hair white. After a month on Votrient, the tumour in my mouth was still growing but somehow the lung lesions had no growth at all.
Because the mouth tumour was causing pain and preventing me from eating, I went for 10 fractions of radiation. It was excruciating. My mouth was on fire and I couldn’t eat anything for a month. The radiation helped shrink the tumour, but only for a couple of months.
Moved in with parents
At this stage, Geo and I decided to move from Vanderbijlpark to Sasolburg to live with my parents for added support. Our families have provided tremendous support to us. I love and appreciate them so much.
The beginning of this year, my back hurt badly. After being rushed to hospital as I couldn’t move my legs, a MRI showed the cancer had spread to my spine and fractured a couple of my discs. I was referred to an orthopaedic surgeon, and had kyphoplasty (vertebral augmentation surgery to treat fractures) to stabilise my spine.
Unfortunately, a lesion was also found in my neck. Ten fractions of radiation was prescribe which was successful. I am currently on another chemo regime: Taxol together with Votrient.
I will never give up
The tumour in my mouth is still growing, but there are parts of the tumour that is dying. I pray that the chemo will kill it completely as I still have so much I want to do in my life. I want to see my precious children grow up. They deserve a healthy mommy to play with them. It breaks my heart if they ask me to play and I feel too tired or I’m in pain. They don’t understand. It’s a tough hand we have been dealt with, but I will never give up.
