Two terrifying things

As the days post -surgery go by, I am starting to gather a little more energy. But I still have so many things to face that terrify me. On this day I’m facing two at once, getting my staples from the surgery pulled out of my head (woo hoo!) and meeting with the neuro-oncologist to discuss my treatment and prognosis (exciting!).

Again I bring my team of Lee and Rhian into Cabrini. Lee can’t face watching the nurse take the staples out of my head, but as a GP Rhian has seen and done it before so she stays in the room to hold my hand. It’s one of the more unpleasant experiences of my life. I swear the nurse is using a giant pair of pliers (Rhian assures me that’s not true). I’m off the Endone so all I’ve had is a couple of Panadol about an hour beforehand. So yes it’s painful. But it also feels so wrong. It’s as if she’s reaching into my head, it feels mushy, and the staples are sliding through my skin as she pulls them out. I shouldn’t look at them coming out but I can’t help it. I’m squeezing the life out of Rhian’s hand and just trying to breathe through it. When I think we must surely almost be finished the nurse says, ‘You’re doing really well. We’re halfway there now.’ Fuck you!

Once all the staples are out the uncomfortable tightness across my forehead is gone and I’ve gotta say that feels good. The nurse has also cleaned the wound and given me a new dressing. She says in 5 days I can wash my hair and wet the wound. I’m nervous but relieved … I have never gone this long without washing my hair and it’s grossing me out!

Terrifying thing part 2 is meeting with Ronnie, the neuro-oncologist. He will basically confirm the results of the biopsy, what he recommends as my treatment plan and how long I have left to live. Okay that last part I made up. But it’s genuinely what I’m thinking and what Lee and Rhian will later tell me they were as well. At this stage all we know is that it’s likely a high grade tumour. So I’m praying for Grade 3 and some treatment options, but dreading grade 4 and a ‘let’s focus on keeping you comfortable’ palliative care type situation. I’m only 35 years-old and nowhere near ready to lie down and wait for death to come find me. Sitting in that waiting room is the most scared I have ever been in my life, followed closely by waiting to meet with the neurosurgeon Myron who I was convinced was going to tell me my tumour was inoperable.

They’re running late and the wait is pure hell. Finally, we’re called in and there is Ronnie with one of the brain tumour nurses. They know what we’re all here for but they make me go through my entire story again (this keeps happening every time I meet with someone new. I can’t tell if it’s their way of testing that I’ve still got all my marbles, or kind of a weird getting to know you process … either way I just find it totally frustrating). Once we run through my story yet again he wants to do some tests on me to make sure everything is functioning and I’m ‘neurologically intact’. I patiently follow his pen with my eye and touch my nose with my opposite hand but all I want to do is yell, ‘Can we please just get to the serious stuff?! This is my life we’re dealing with here!’.

Eventually we get to his diagnosis. He confirms that my tumour is a Grade 3 Anaplastic Astrocytoma (not a Grade 4 phew!) in the front left region of my brain. This is a type of tumour that no one knows how to cure yet (okay that part’s not so good). The hope is that shrinks and doesn’t start growing back for many years, because if it does it’s aggressive and really hard to treat. He recommends radiotherapy 5 times a week for 6 weeks, a month’s break and then a year of chemotherapy tablets 5 days out of each month. So it sounds to me like I have one shot at blasting the shit out of it and then hoping it doesn’t start growing back. That doesn’t sound like a great life to me.

Perhaps sensing my hopelessness Ronnie says that given my young age and good overall health I should respond well to the treatment and I could have many more years of a healthy life. The thing is, I don’t want many more years. I want decades. I want the chance to meet the love of my life, to get married, to have children, to buy a house, to publish my first novel, to travel the world … there is so much more I want to do.

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