My Heart, Your Home: The day you learn you have a brain tumor   

Saturday, 31 October 2015

The day you learn you have a brain tumor

Tuesday 22nd of September I dropped Evie at kindy and left my two youngest kids with a friend while I went into town to have a CT scan performed on my brain. It was not something I was concerned about. I was not fearful, nervous or scared. It was a test to rule out anything sinister so that we could investigate my hormone levels as a cause to my severe headaches and lactating breast.

I laid there and completed the 20 minute scan, 20 minutes to lay down in quiet. It was almost peaceful. I picked up my kids and took them home for a sleep. On the way to pick Evie up in the afternoon from kindy I dropped in to the radiographers to pick up my results. Instead of being handed a big envelope of films, I had the radiographer meet me at the desk asking me to come in for some "clearer images". What does that mean?, I begged. He explained I needed to have a contrast injection to achieve a clearer image and that it was nothing to worry about. Yet him and all of the receptionists were looking at me. Looking at me like they knew something they weren't going to share with me. I walked out of there convincing myself that there was no problem, knowing that something wasn't quite right. 

I went back first thing the next morning. The door was opened for me, "Good Morning Jessica, right this way", they all watched me walk down the long corridor to the CT scanner. I was laid down by a woman with a gentle voice and calming hands and was hooked up with a cannula. She was shocked to learn that I had three young children and suddenly I saw a sadness in her eyes, she looked at me differently. For 40 minutes I laid in that scanner watching through the window that instead of the one radiographer from the day before there were three and "fresh out of med school" employee... there to learn. Learn because there was something wrong. I had become a case. 

I got home and called my GP, prepared to beg her for information. Prepared to tell her I can feel it. I know there is something to know. She answered the phone with an appointment that afternoon for an MRI scan and a number to call, "there is a lesion". So I called the number and confirmed the appointment, 1:45 that afternoon. I convinced myself that a lesion is okay. Its not a tumor, a lesion can be nothing. Then I received a call from my GP with an appointment the very next day with a neurosurgeon - "He is the best Jess, if I was to have anyone go into my brain, this is the guy". So I googled brain lesion. It can still be a tumor!

That afternoon I walked in to the MRI scanner, in a gown, naked from the waist up, another cannula in arm. I was strapped on to a long skinny board. Ear plugs shoved into my ears, headphones over top, wedges either side of my head, and entered into a plastic holder going over my face, then mechanically moved into a tube. A tube that sounds like car alarms, organ players and knocking. I was to have 20 minutes of scanning. Only, I wasn't moved out of that tube until 1 hour and 20 minutes later. 

I got home and I called my GP. Tell me what is going on. She didnt know, not yet. 6pm on thursday the 24th of September I received a phone call.

"I'm sorry to do this on the phone, normally I would want to see you"

What is it, I begged.

"There is a tumor"

Right okay, is that what is causing my headaches?

"Yes, absolutely"

Okay, well thank you. 

I got off that phone call and sat in shock for 5 minutes. I went to go and talk with Anthony to let him know. I saw his face when I told him that was the drs and I couldn't tell him. All I could do was cry. I sobbed. Big toddler-like heaving sobs. A cry that I didn't recognise and a cry that I haven't done since, until tonight. 


The next morning I went to see my Neurosurgeon (Dr. Raymond Cook, if ever you need one, he is amazing). I walked down this long white corridor with doors on each side, to the lonely door at the end. I paused, I took a breath, I took a moment to savour that moment. In my mind this was the last time my life could ever be ignorant to what may be. Before I opened that door, there was still a chance that the radiographers were wrong. There is still a chance there is nothing. 

I walked into that appointment to learn that not only was there a tumor, but there was a cyst. A small tumor in my left frontal lobe. A tumor that is likely benign, but can not be guarenteed. A cyst in the pituitary gland. I panicked. My skin went cold, covered in sweat, I couldn't speak properly and I couldn't breathe. 

"Its okay, its not totally bad news", he said.

Easy for him to say, this is MY head we are discussing and there is something there that shouldn't be there!

I left relieved that we are most likely not looking at cancer, there would be no treatment plan. There would either surgery, or there would be monitoring for the rest of my life. I left with a handful of other specialists to see, more drs, more appointments, more tests. I left feeling overwhelmed and lost and down right terrified.

I had an adventure ahead of me.

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