Beware there is graphic imagery of individuals post surgery in this blog post
After 12 months of tests and uncertainty, in November 2015 I had an MRI at 4.30pm and was told to go home and tell my family I had a brain tumour in a very dangerous spot and that the surgeon would ring me and organise to be admitted to hospital that night. After a long operation the tumour was removed and I was home a week later. My life as I knew it had changed. With great support from my husband and sons I commenced my recovery. A special friend was a massage therapist and she was also a major factor in my recovery both physically and mentally. Lots of brain training puzzles, exercise programs to improve balance, co-ordination and stamina, were all required. Fatigue is a huge factor. Listening to my body when it needed to rest, was also part of the recovery. In the early months I found it hard to concentrate and always second guessed myself. Christmas Day I had post it notes all over the kitchen to help me remember what I had to do. My goal was to play tennis again which I accomplished with the help and support of the local tennis club and even won my first grand final.
My regular scans were showing that all was going well until early 2018 when I got the news that the tumour had recurred in two spots. This was harder to deal with than the initial diagnosis as I had to wait to see what path the doctors were going to take. I had stereotactic radio surgery in May 2018. Five days of high dose radiation direct to the tumours. It was the most confronting thing I have endured in my life. I am having regular MRI’s which are always an anxious time. You are always waiting for the “bad news”.
The hardest thing to deal with was the isolation. You certainly find out who your true friends are. Brain tumours are hidden so most people see no change to you. You look the same on the outside but inside your head everything is different. You can look well but feel terrible, act brave but are scared, seem strong but feel weak, look happy but feel sad. Sometimes the tears just come when you least expect.
I have a wonderful psychologist and medical team who help me deal with all the curve balls that this diagnosis comes with.
A significant step was to attend the Peace of Mind Support Group. I wasn’t sure if I could emotionally handle it, but have found sharing and supporting each other has been so beneficial. Even though I was petrified, I attended the Brain Cancer Retreat on my own last October where I met so many inspiring people who were all experiencing the same journey. For the first time I felt that people understood how I felt and I wasn’t alone. Many thanks to Bec and all the dedicated volunteers and donators who organised this wonderful retreat.
Every day is a challenge for me and I have learnt that I have to stay within my limits. It is encouraging to see that more funding, research and awareness is being directed to Brain Cancer and giving people hope.
“A little progress each day adds up to big results”