Melody

Can you tell me about your brain tumour journey?

I was undergoing Immunotherapy for stage three Melanoma and had my first three monthly scan when a brain lesion was found. Luckily it was only small and found very early on. It was located in the left frontal part of my brain that can affect speech and movement. I had no symptoms and it was purely picked up by a routine scan. I had various tests and consults with my Neurosurgeon to discuss the best course of treatment and any risks involved. It was decided that because I only had the one small lesion and my history of melanoma; surgery and radiotherapy were the best options for me. I had a craniotomy which left me with some right sided hand paralysis straight after surgery. This improved and largely resolved itself before I left the hospital. I spent 1 night in the ICU and 2 nights on a ward before going home. It was confirmed to be a metastatic melanoma lesion that had spread to my brain but I was amazed at how I could have brain surgery and feel no pain at all. I was obviously given some good pain relief but apart from the temporary hand paralysis and now long term hand weakness, my journey has been a smooth one. I am so very thankful to my cancer team who have basically saved my life. I have now been NED for a year thanks to them all.

Are there any doctors or specialists that you would like to mention that were part of your treating or rehabilitation team?

Absolutely! Firstly, my GP Dr Kevin Murphy who has been looking after me for nearly 10 years and removed my initial melanoma and sent me straight to a specialist and for further tests when it was suspected of returning. He has always listened to my concerns and not wasted time seeking further investigations. He has always referred me to wonderful specialists.

Dr Rohit Joshi. My oncologist who is always cheerful but thorough and excellent at what he does. He has always made me feel safe and positive during my treatment journey and no question was too small or silly to ask him.

Dr Robert Whitfield. My initial surgeon who removed the lymph nodes under my arm that where so swollen with cancer you could see them like a golf ball under my skin. His bedside manner is excellent and so are his surgical skills. I can barely see the scar under my arm, it was so neat!

Dr Santosh Poonnoose. My neurosurgeon and life saver. Without him I believe I wouldn’t be here typing these words. I still find it amazing that you can have such a serious surgery with such little side affects afterwards. This just shows the level of hard work, skill, knowledge and care that all of those people have undertaken over the decades to get medical science to this point. They are angels that walk the earth.

Dr Phuong Tran. My Radiation Oncologist. I only had one large dose of radiation after my surgery just to “mop up” any stray cancer cells left behind. Dr Tran was very comforting and explained everything in meticulous detail for me so I always knew exactly what was happening with my treatment and any after affects such as memory loss that I may have and long term recovery.

What have you found helpful throughout your journey?

My cancer team have always been available to answer any questions and their admin teams were also amazing. They were always helpful and friendly and would try and get any concerns I had through to the Dr if needed. The Oncology Nurses were absolute angels also and made my treatment each month as easy and smooth as possible. When things went a little wobbly they would always handle it with such care and grace that I will be forever grateful to them. There was a volunteer named Julie at the cancer centre at Calvary Elizabeth that I called my ‘coffee angel’ as she looks after all the patients having treatment. She always lent an ear to people and bought us drinks and snacks to get us through. Those little things are bigger helps than they get credit for. And Dr Joshi’s assistant, Sky who ran everything like a well oiled machine!

What are some things you wish people were more aware of when it comes to brain tumours?

That they don’t always come with side effects. I had none and there are so many variants with brain tumours. Mine was only there because it started off somewhere else. Not all brain tumours begin in the brain itself. You can recover very well and quickly from the surgery on your brain. The body and medical science are amazing things.

What advice would give to another person who is going through their own brain tumour journey?

Follow your teams advice and try and stay positive. Look after yourself to help your recovery and try not to be too afraid.

How did you find out about the NRF?

My Neurosurgeon spoke to me about Grey May and the work that they do for research.

Why do you choose to support the NRF?

Without this type of research and further funding, many people like myself wouldn’t be here today to talk about it. I got to celebrate Mother’s Day today because people have devoted their lives to saving others by researching cancers and learning new treatments and surgeries. How can I not support something that has helped me stay alive?

Do you have a message for our brain tumour researchers here in SA?

Thankyou and God bless you all. I can’t even begin to explain how grateful I am. You are all Angels to me.

Grey May is brain tumour awareness month, how would you like to see people get involved this May?

By just taking the time to read any articles about it and get a sense of the work that goes on behind the scenes. And advocate for more local, state funding for our South Australian researchers who go largely un-noticed for the great work they do. You never expect this type of thing to happen to you, but when it does, these are the people that help to keep you alive. We need to support research BEFORE we need it, rather than later.

Learn more about Grey May here

How are you feeling these days and what are you looking forward to?

I have been 1 year NED and have finished all my treatments now so am on three monthly scans to just watch and wait for now. I am feeling stronger each week now and feel I can finally start looking to the future without fear.

Learn more about the ongoing Brain Tumour Research the NRF supports