• Caterina Sullivan

Reflections on Brain Surgery



Tuesday will mark the 8-week post-op milestone for me.


Two months ago, I was wheeled into an operating theatre at 7:30 on a Tuesday morning to undergo the most significant operation of my life to date.


A lot of people have asked what that experience of brain surgery was like for me.


And I honestly can't recall feeling anything much.


The one emotion I did have was around my parents. I remember seeing their faces as the doctors ran through everything that could go wrong during the surgery, and I remember not knowing how to make anything better for them. I reassured them that I would be fine with no knowledge myself that 'being fine' would be the case.


After they wheeled me past the doors, I remember feeling pretty numb. I had so many external stimuli which I was trying to process that I found myself too busy to feel anything. By the time I made it into the operating room, I had been descended upon by several student doctors who wanted to know everything about my symptoms, how we discovered the tumour, anything and everything they could think of to ask.


I'm so glad the student doctors were there. They prevented me from over-thinking what was about to happen and made me focus on all of their questions - so much so that I actually missed the part when they gave me anaesthetic. The next thing I knew, my eyes were slowly closing.


I woke up a few hours later in a recovery ward with quite a few other patients. Everyone was pretty hazy waking up from the anaesthetic. The first thing I remember was complaining of horrible pain in the back of my head. Before I knew it, I was being given endone in a syringe. I was told by the nurse that the first thing I did when I woke up was burst into tears and cry out for my partner. She apparently asked if he was at the hospital, and I told her he was at work. She then reassured me that he'd be here soon, and I apparently stopped crying immediately and responded with, "Oh, ok," in quite a cheerful tone.


I was pretty perky after a few minutes and decided I wanted to go to my hospital room to see my parents. Retrospectively, I feel sorry for the nurses as they eventually had to send a nurse to me to discuss politics to keep me entertained because I was so chipper. My parents and my partner had all prepared for me to be a vegetable for a few days. I don't think anyone was expecting me to wake up how I did.


When the nurses brought my belongings, I immediately sent a text saying hello to Mum, Dad, John and John's family. I couldn't think of what else to say at that time. Plus, I was in the midst of a very heavy political discussion with the nurse.


Within an hour, they sent me off to my room where I met Mum and Dad.


There were a few things about my surgery I only found out about after the fact. These included the catheter I would have to wear afterwards (which got a twist in the tubing around midnight on my first night, which was the least comfortable feeling I think I've ever experienced bladder-wise). Also included in this list was the fact that the pain in the back of my head (accompanied by large scabs) was from the pins they stuck into my head during the surgery to keep my head still. Of course, it makes sense retrospectively... but it was still an interesting surprise. I was also surprised to find out I had massive plastic tubing in my nose about three and a half inches long, held in by stitches, which made it somewhat difficult to breathe. This was to keep my nose protected as the surgery was conducted endoscopically through my sphenoid sinus.


All I wanted to eat after surgery was fruit - so much so that when my partner brought my favourite fried chicken from an Asian takeaway in Woden, I barely touched any of it. The watermelon, however, I practically inhaled. I didn't want chocolate (even now, my sweet tooth has diminished); I didn't want savoury; I just wanted fresh fruit. The colder, the crunchier, the juicier, the better.


I was exhausted, especially with how much water I felt like I needed to drink. A combination of artificial air through the heating / cooling system, having to breathe through my mouth and my general tendency to drink litres of water a day was pushing me up to consuming around 10L of water per day. This concerned many of the medical team around me as they weren't aware of my normal consumption prior to surgery. While I knew they were just trying to do their job, it was frustrating that they weren't completely able to understand my history.


The first night's sleep was pretty rubbish and included a twisted catheter tube as I mentioned earlier. I think I only asked for endone once more during my hospital stay and then paracetamol maybe twice. The pain was pretty minimal. Definitely a lot of discomfort but minimal pain.


The next morning, I worked out what time my parents would be at the hospital and explained to the nurses I would be getting up, getting the catheter out, showering and dressing by myself, having my bed made and be sitting up in the chair by the time my parents made it into the hospital. I remember one of the nurses looking at me like I was insane but another fully understood wanting to do things for myself to make myself better.


By 10am the day after surgery, I had showered independently, dressed myself, had my catheter removed and was sitting patiently in the chair as my parents walked around the corner. The look on my mum's face seeing me sitting there will stay with me for the rest of my life.


We often wonder in life whether we've made the right decision. Sometimes it's around what food we've served at a dinner party or what colour car we've bought. Other times it's around whether brain surgery was the right move for a particular circumstance.


Prior to surgery, doctors had told me that there was a chance the surgery would go smoothly but still not be successful in alleviating my symptoms. I made the decision to go into that surgery with full knowledge that this would be the case.


I'm so happy I made that decision.


By Thursday evening, a mere 53 hours after brain surgery, I was out of the hospital and back at home under 24/7 care from Mum, Dad and John.


For the first week, I stayed on a couple of paracetamol a day as I left the hospital with a massive migraine due to a knot in my neck. I continued to empty my bladder every 30 minutes (not an exaggeration) and had a pretty consistent diet of fruit for a while. 8 weeks later, I haven't had any headaches since that knot in my neck released. I've been eating my normal food, and my water consumption has normalised to pre-surgery. I haven't had hot flushes, heat rashes or excruciating period pain. My mood is starting to stabilise; my skin is going back to normal; my hair is going back to normal. I'm feeling more energetic.


I am still waiting for the all-clear to completely return to a normal life - work, study, gym, etc.. But for the most part I am back on track.


The support of my family and friends was really phenomenal, and I'm so grateful to everyone who helped me, Mum, Dad or John in some way shape or form.


I'm sure I will have many more updates on my recovery as I get back into my writing. Thank you for your patience with me as I go through this journey. It's fantastic to know there is a community of people behind me all the way.

Authorised by Caterina Sullivan (2018)

PO Box 6157

O'CONNOR ACT 2602

Australia