kiwibraintumoursurvivor-TODAY: August 2014

Prior to 2004 I thought I had been to hell and back with all my neurosurgeries and all that they had left me with. However, I can fairly say that the hardest times I have had to walk through were in the years following my three lots of neurosurgery in 2004.

After these surgeries I was placed on a high dose of steroids to reduce the swelling in my brain. One of the side-effects of steroids is that they cause you to gain weight, rapidly. They also cause your appetite to increase to about tenfold and you are forbidden to try and lose the weight.

In the space of 10 months I put on 40kg and went from being a ‘big’ person, to no longer recognising myself when I saw my reflection. And then I had doctors say I had done so well to ‘only’ gain the 40kg! I just wanted to scream at them “YOU HAVE NO IDEA WHAT HELL THIS IS”.

In 2003 I had been put on steroids for six weeks after having very basic surgery to have a monitor placed in my brain for 48 hours. This excerpt from an email that I sent to friends at that time accurately describes how they left me feeling.

“I haven’t mentioned in any emails just how much they (the effects of the steroids) have affected everything I feel about myself. They puff you up something terrible and I currently resemble the ‘marshmallow man’ from ‘Ghost Busters’. It’s been so extremely hard to look in the mirror and not even recognise the person I see….. I know that we all say beauty comes from within etc., and I totally agree with what is said, but in saying that, it has been horrendously hard.”

I had only gained 6kg on the short dose of steroids I was on when this email was sent out. I am just so very glad that I didn’t know then what was going to happen and what I was going to have to go through in 18 month’s time.

Incredibly kindly, for Christmas in 2004, Mum gave me a photo shoot with a photography portraits company called ‘BodyShots’. I had the photo shoot straight after Christmas and those photos became a lifeline to me. By this stage I had already gained a lot of weight and the photos were massively airbrushed. However, these photos were like gold for me over the years to come. They gave me a glimpse of the fact that I could look attractive and I absolutely clung to that.

Here are some of the ‘Body Shots’ photos, followed by a photo that my father took (un-airbrushed) when we returned home.

After about a year on steroids I clearly remember getting to the point where I said to Mum that I no longer wanted to go outside the house or down town. I didn’t want to go anywhere where people could see me, or where I could catch my reflection. Because of my memory problems I would forget I was as big as I was and every time I saw my reflection I would get such a huge shock that it upset me terribly. However, in my response to saying this to Mum she said what seemed to be the cruelest thing in the world; that if that was the case, we were going out for coffee and now. Little did she or I know that she actually saved me from starting to develop a phobia.

As the months moved into years while I was on steroids I continued to exercise every day. At first I was walking 5 – 10km a day. Then in 2005 I started falling over during my walks and skinning my knees (being on steroids not only causes you to put on weight, and your appetite to increase, but they also cause your immune system to significantly weaken and your skin to thin out). I was on an endless course of antibiotics and with money that I had recently inherited I put a deposit down on an elliptical cross trainer.

I was still very weak after my three lots of surgery in 2004 and didn’t feel strong enough to do my workouts. Every day I would say to my Mum that I didn’t know how I was going to do my workout, and every day she would reply “Just try doing 5 minutes and go from there”. So every day that is what I would do.

There is a verse in the book of Philippians in the Bible that says “I can do all things through Christ who strengthens me”. Every day, as recently as today I still pray, “Lord, you say it, I believe it, please give me that strength” and every day he is faithful.

It turned out that the reason I was falling over so much was that there were two haemorrhaging blood clots on the back of my brain stem. I had surgery to remove these clots in early 2006 and this once again left me experiencing extremes of weakness. The surgeons said to my parents after that surgery that it had been my strong heart that had got me through it so well. Even though I was morbidly obese, I was fit.

December 2006 -

In retrospect it seems strange to me that even though I had been a Christian all my life, it wasn’t until there wasn’t anything in the mirror that I could identify with that I turned to God for my identity. I remember starting to pray throughout each day for God to show me what He saw when He looked at me.

I don’t remember seeing any clear picture, or hearing God speak any clear words to me, however, between the end of 2006 and the end of 2009 I worked out on my cross trainer every day, calling on God for strength with every workout. Between 2006 and 2009 I lost 40kg, and I have lost another 15kg since then. I found that not only did my workouts increase my fitness but they also gave me freedom from pain and my weight began to reduce. During the years that I lost my steroid weight exercise changed for me. It went from being something I had to do, to being the best time of my day and something I really wanted to do.

There was something that was hugely different in this weight loss experience from the many times I had lost weight (and regained it) in the past. As each kilo came off I felt immense excitement and felt gorgeous. I clearly remember at my 30^th birthday (2007) feeling so slim and beautiful, and yet I was more than 35 kilos heavier than I am now!

There was an enormous change in how I viewed myself. Even though on steroids I was the heaviest weight I have ever been, I slowly started to view myself as a treasured daughter of God’s, and to see myself as truly beautiful. Now I am not saying this in a ‘full of myself’ way, but rather in that I had begun to see myself as God saw me. My external appearance had actually become irrelevant to how I felt about myself. For the first time in my life I began to actually feel joy and contentment when I looked in the mirror. I no longer saw my size when I saw my reflection because I felt such beauty inside.

I am not saying that the snap answer to losing my steroid weight was in merely praying for God to show me what He saw, there were several things that worked together. I don’t have any snap formula for how I lost the 40kg I had gained. I know that while I was on the highest dose of steroids I took natural appetite suppressants for a while. I had a hunger that was just out of control. Twenty four hours a day I felt ravenously hungry and nothing seemed to quench that hunger. These tablets helped to curb it a little. Eventually though I was able to start reducing the portions of food I was eating. I also loosely followed the Weight Watcher’s ‘Points’ plan, though I didn’t attend any meeting. And, as I’ve already said, I exercised daily.

In walking through the hardest part of my life, I feel as though I have been set free. I would never want to go through that out-of-control hunger, and equally out-of-control weight gain ever again. However, I am so incredibly grateful that God not only allowed me to go through those years, but walked beside me every day and gave me the strength to lose not only the physical weight, but also the emotional weight of a lifetime.

A PHOTO LOG OF MY JOURNEY -

2007 -