"The Amanda Grobbelaar Story - Anchored in the Storm, a journey of faith, hope and love"

My life changed forever on Tuesday, the 14th of June 2011 when the doctors initially diagnosed me with a brain tumour.

It was the long weekend of my birthday. I turned 42 on Saturday the 11th of June 2011.  Monday the 13th of June was a public holiday in Australia to celebrate the Queen’s birthday.  Because we went away for the long weekend my friend Jane came over on the Monday to wish me a happy birthday.

We were sitting at my dining room table, having coffee and chatting away, as girls do and the next moment I felt a tingling sensation left of my chin. It moved across my cheek and rested above my eyebrow. 

I asked Jane if my face looked any different and she said no. I did not believe her. It felt as if the left corner of my mouth was pulling down so I got up, looked in the mirror and lo and behold, I still looked the same.  For a fleeting moment I thought this is surely what suffering a stroke feels like. It happened around 09:00 in the evening and the sensation lasted for about 15 minutes and I soon forgot about it.

The next morning whilst talking to a client on the phone the same thing happened and because it felt more intense and lasted a bit longer I decided to have it checked out.

My GP was not available so I drove to the Mater hospital in Mackay and saw the doctor on duty.  He did a few observations and ordered an MRI straight away.

As the scan would not be covered by Medicare or Private Health, I phoned my husband to make sure we had $750 in our savings account. He asked what I was up to and before I knew it, he was by my side. 

They told us that the MRI will take about 20 minutes, but I ended up being in there for at least an hour longer. I am so grateful for MRI sedation, or as I call it:  “Happy Juice”!

After the MRI was done, we received an envelope with two green stickers on it so I was confident that there was nothing wrong. I was even a bit annoyed with myself for the money and time we wasted.

Imagine our surprise when the doctor read the report, looked at me and said:  “Mrs Grobbelaar I am afraid I have some very bad news for you. You have a brain tumour”. Just like that! No other prior warning. My husband says that he still gets flashbacks of that moment.

I said:  “OK, so what do we do now”?
He said:  “I am afraid but you are in the middle of a very dark storm”.

Telling the children

On our way home from the hospital, in my head, I rehearsed how to tell our children. Ewan was 16 years old and Annerie, 14. How do I burden my beautiful, happy go lucky children with something as morbid as this?

​Like any other parent, I wanted to spare them, but I already had an appointment with the brain surgeon for two days later and was told that he operates on Tuesdays. Brain surgery is not something you can hide from anyone.

No matter how hard I tried I could not come up with a milder version of the word “brain tumour”. There is no way anybody can sugar coat the word “brain tumour”. It is what it is.                               

The children arrived home from school and I was making sandwiches, trying very hard to act as normally as possible. 

I did not fool them, because Ewan said, “Mom, what’s wrong?  “Why do you think anything is wrong, my boy?  Ewan:  “Because you always laugh more when something is wrong”. 

I have an agreement with my children that if they are brave enough to ask a hard question, I shall honour their boldness with the truth.  Boy, did this silly agreement come back to bite me a few times already!

I looked at my husband, who was also standing at the kitchen counter and I could see that he was choking up. He could not speak at all and my heart broke for him. I have seen him cry only twice in all our over 20 years together, the one time being when my father passed away. Charl loved my dad as his own.

I said to Ewan that I would tell him, but I needed him to a promise me something first. The children were busy with exams and I knew my son worked hard to get good marks. The only thing he ever said he wanted to be was a doctor. There was no way that I was going to allow this news to crush him and rob him of his dream. 

I said:  “Ewan promise me that after I have told you, you will put the news behind you straight away, no matter how hard. I want you to hit your books and do what needs to be done to get your best results ever. 

​Ewan promised and I said:  “The doctors think I have a tumour”. Ewan said: “Where?” I said:  “In my brain”.

His face dropped and I could see the pain in his eyes. He turned around and went to his room and closed the door. Ewan never closes his door. I gave him some time and later found him on his bed and also started to cry when I saw his wet face. I crawled in behind his back and put my arm around him and I promised that I would put up the fight of my life.

To fully understand the impact for my son, it is important to mention that his friend Jaco’s mother passed away when they were in primary school – she had brain cancer. 

We all journeyed with this beautiful family, but when we made plans for Christmas they sadly made plans for another round of chemo. The news hit Ewan hard because he understood the potential consequences for us as a family.

​Now it was my daughter, Annerie’s turn. I told her the same and she immediately put everything into perspective when she said: “Oh thank goodness, it is only a brain tumour, it could have been so much worse”! We all laughed. Bless her beautiful, positive, fighting fit spirit!

Meet with the Brain Surgeon in Townsville

It was very hard for us to leave the children in Mackay while we saw the specialists in Townsville. All our family lives in South Africa, but thankfully the Jreije-family took in Ewan and the Marsh-family took in Annerie. 

When we saw the neurologist and brain surgeon in Townsville, they found inconsistencies with the tumour diagnosis and they decided to rule out a few other possibilities before they opened my scull.  The surgeon explained that even when a tumour is easy to reach, there are always risks with brain surgery.

The surgeon ordered another MRI for two weeks later and because everybody was praying for me, we were 100% confident that this MRI would be clean. I even wrote my testimony and just needed the follow-up MRI as the powerful show stopper! "Now you see it and now you don’t"! But spoiler alert: It did not happen quite that way.

We were so confident that the tumour would be gone, that as soon as we got home, my husband, Charl and son, Ewan took two laptops and ran the scans frame by frame.

Imagine our shock and surprise when we saw that instead of one there were now three! Whatever it was, it was multiplying at the speed of white light!  

I was admitted to Townsville Mater Hospital and the doctors started with a rigorous process of elimination.

The possibilities were:

• multiple brain tumours;
• multiple strokes;
• a neurological condition which is irreversible;
• a neurological condition for which there is no cure.

Obviously we all hoped and prayed for the reversible option, but the absolute last test I had, a lumber puncture, where they took sap from my spine, confirmed that I did not have the “reversible condition”. 

​I received a phone call from the  neurosurgeon, Dr Eric Guzzo one Saturday morning to tell me that I have Multiple Sclerosis or MS in short.

I am not sure how many of you are familiar with the cruelties of this debilitating disease. 

Medically speaking, MS is chronic – you have it all the time.  It is progressive – it gets worse over time and it is incurable – doctors cannot fix it.

In short, your immune system incorrectly attacks your healthy tissue – your brain, spinal cord and optic nerves. It cuts off communication between your brain and the rest of your body.

MS can cause blurred vision to complete blindness, loss of balance, poor coordination, slurred speech, tremors, numbness in any or all parts of your body, extreme fatigue, problems with memory and concentration, lost of all functions and ultimately paralysis.  Many MS sufferers end up in a wheel chair.

For most, it is a very painful condition and many cannot get out of bed. One lady said that when she gets up in the morning, and she can feel her feet, she knows it is going to be a good day.

So, the marks on my MRI were not brain tumours, they were lesions where my immune system attacked and tried to destroy my brain. 

For the first time, I cried. I was utterly heartbroken. Maybe because the neurologist said that what I was diagnosed with, was a hundred times better than what they initially thought I had.

Through the tears I said to my husband: "I refuse to be grateful for this". Everybody was so grateful that I did not have brain cancer, but it did not feel right to be grateful for something as mean and monstrous as MS. 

I was heartbroken and disappointed, but still I never asked:  “Why this or why me”? I was too grateful that it happened to me and not my husband or my children.

​I guess this was the defining moment of my brand new reality; the start of our brand new journey or shall I rather say, obstacle course.