Are you as calm as you sound?

Before I finish writing about the lead up to my diagnosis I wanted to put something down about my first week. Mainly for my benefit because I want to document it before I forget. For the most part I have been pretty positive, proactive and organised about the matter. I need to approach this like any other matter in my life; with a spreadsheet, to do list and skillful research.

I was diagnosed on Tuesday 12th December around 9am. I had gotten the bus from my home in Surry Hills to Randwick where my ENT office is and arriving half an hour early. I thought I would have time to finish my coffee and relax a little but he ushered me straight in since nobody else was waiting.

It will become clear how I knew what I was looking at when I finish my story up to diagnosis. But basically, he put the image on screen and asked if I knew what was wrong and, of course, I pointed straight at my tumour. He confirmed that on the image was an Acoustic Neuroma and talked through the report. It was very brief and he swiftly moved into various treatment options (which will be a post on their own). He had already called the ENT who would perform my surgery on the Saturday after he had opened my scans and sent me on my way to make an appointment with him.

I came out of the ENT office a little dazed but also the outcome had been as I expected. I called my husband George and I found a seat to collapse onto and had a little cry whilst I explained to him it was a tumour. My husband is a very calm, rational and chilled out guy but I heard his voice crack for the first time in 8 and a half years and he said I am coming straight over. His boss drove him over to see me and we had a coffee and let it sink in. Honestly, I have never seen George look so pale and worried; this was heartbreaking.

The following two days were spent getting hold of my surgeons office and telling family, friends and work. Everybody was very supportive and kind which made the experience a whole lot better as I can imagine without that support it would be hell. This was very draining on both of us and we spent the time inbetween pretty much staring into space. My boss called me that morning and had a good chat with me to make sure I knew I would be supported from work and what has stuck out most of that conversation is this “Can I ask a question; are you as calm as you sound?” The honest answer is complex. Yes, I was calm; what is panicking going to achieve? Inside I am in shock, I am confused and it all seems surreal. But, I heard the ENT words, I knew what needed to be done and I was getting on and doing it.

George and I met up with different friends throughout the week and had those first potentially awkward conversations where other people may not know what to say. But, actually, they were all fine. There were some humerous moments, for example, when explaining we felt surgery was the best option to just get it out one friend said (by accident) well yes, that’s a no-brainer. He was mortified but I found it so funny. It was a slip of the tongue after all and his face was comical! Another friend was talking about his work and how unhappy he was there and said “honestly, it’s cancerous” well, I have never seen anybodies eyeballs pop out of their head so fast and he covered his face began to madly apologise. Again, this amused me because of the shear awkwardness and I have to get my laughs where I can!

People kept saying they wouldn’t be coping as well as I and maybe some people wouldn’t; some people may cope better but we are all different and we do what we need to do. But what is important to me is not just to document the things I want people to see but to document the truth. So, what happened over the weekend was a little different. I think I was so exhausted by Friday (I went back to work on Thursday) that I just collapsed and did not want to do much at all. Although I did go out and about, met some friends etc I also spent a lot of time at home….crying. I would find for no particular reason I would burst out crying. Not a crying I have ever felt before, a really overwhelming from the heart cry. My heart hurt. I was also doing a lot of staring, forgetting what I was doing or why I had gone from the kitchen to the bedroom. The crying motion came from my stomach, worked up my body rolling into a big ball of pressure, squashing my heart on the way up and then coming out of my mouth in quivers while streams of tears ran down my face. I was heartbroken.

We spent Sunday night talking on Skype to one of our close friends and this really perked us both up and reset my emotions for Monday morning. Toby, I know you are reading this, thank you from the bottom of our hearts for spending the time with us on Sunday. I also want to thank everybody else who has supported us this week; all our family, friends and work…you have all been fantastic x