So, I have brain cancer, now what?
I was booked in for my brain surgery (craniotomy) on the 16th of March. Everyone tells you that you are ‘so brave’, but you just have to do what you have to do right? It’s not like you are going to say, you know what, leave the tumour in there.
Not thinking about the fact that someone is going to cut your head open helps a lot. Except when you accidentally think about it and start crying on the way to the supermarket to get ice-cream at 9pm the night before you are booked in for surgery (I deserved it, and had to fast from 12am).
We had to be at the hospital at 6.45am, we got there and ‘checked in’ and were told there would be a bit of a wait. So I decided to use the time that I had to do a quick meditation. I think this helped a lot, I was very zen for the rest of the day and so was everyone else around me. Simon’s best mate Tim came and hung out with us while we waited. It was great to have him there and I think it helped Simon relax a bit.
Lucky charm Dad does it again
Dad booked a flight to arrive at lunch time on S-day. We had been waiting all morning to be called in for surgery, and of course, as he is arriving at the hospital and walking down the hallway, the nurse says that it is time to go. I get in a quick hello before being wheeled off.
Once in the waiting area for surgery, I didn’t have to wait long. I was taken into the room and the anaesthetist started working his magic, I was feeling the slight urge to pee and worried that I would go during surgery. It wasn’t long before I was out cold. Phew! The next thing I remember was being woken up in recovery. “Jaime, wake up, your surgery is over” Thirsty, SO THIRSTY. I drank so much water post op, one of the nurses mentioned a lemonade icy pole and that’s all I could think about all night. That’s when I discovered I had a catheter in. Now that is a weird experience! If you need to go, you just go. Bonus, you can watch it come out through the tube.
I was taken up to my ‘suite’ about half an hour later. Simon and Dad were waiting for me. They wanted to get that icy-pole but the nurses in the Neuro Ward said no. The first night I had to be woken up every hour for checks. I can’t tell you how many times I was asked my date of birth and where I was that week. It was a really interesting night. I was sharing a room with 3 other high needs patients. One young guy had his whole skull removed and his brain was being held in by a helmet, he tried to get out of bed and made a loud crash in the middle of the night. I don’t think the nurses had ever run so fast in their lives. He also was repeatedly told to ‘stop playing with that and put it away’. The girl in the bed next to me was groaning all night and also kept trying to get out of bed. The man opposite me had his belly rubbed by a lovely Irish nurse and then was given an enema as he was very backed up and in a lot of pain.
Waiting waiting waiting
The day after my surgery I had my physio test, success! I can still walk and even go up stairs. I have to wait until I get my pathology results before I can go home. I also was showered by a gay man, that was a new experience. Wishing that I had had a shave before I went into hospital. I got moved into a private room that had enough space for at least 2 beds. Living the dream!
I was originally told by the surgeon that I would need to be in hospital for a week recovery and then 3-4 weeks of rehab hospital. I was telling anyone that would listen that I would only be in hospital for 5 days. Power of positive thinking hey?
So, exactly 5 days after surgery, I got my pathology results. Turns out that most of the tumour was grade II but parts of it were an un-curable grade III (anaplastic astrocytoma), not so good. I officially have brain cancer at 30 years of age. FUCK.
Not only am I not allowed to drive for 6 months (standard after having a seizure for the first time), but I don’t get any alone time for the next month. There is literally someone with me at all times. PLUS no sneaky wine. I miss wine so much, more than I should probably.
During this whole process the only thing that I have been scared about is getting the staples removed from my head. I was way more anxious about getting the staples removed than the actual surgery. Possibly because they just send you home from the hospital with a staple remover to take to your GP. Possibly because when my mum heard about it she mentioned how paper rips when you use a normal staple remover. Not a nice thought.
It was totally fine though, I didn’t even feel a thing. It’s like the wound was numb.
There is nothing like someone telling you that you can’t do something that makes you want to do it even more. Like, washing your hair. You know all those times you are like, ugh, I can’t be bothered washing my hair because it’s such a process? Yeah, I’ll never take that for granted again. 10 days after I washed my hair last, I finally got to clean it again.