How many times have you heard people use the expression ‘It’s not brain surgery’ when they’re trying to explain that something is not difficult to do or understand?
We say ‘It’s not rocket science’ or ‘It’s not brain surgery’ as if these are the most difficult and complex things to do or understand in the whole world.
That’s probably why when you tell people you’re about to have brain surgery, they go very quiet. I just want someone to say, ‘At least it’s not rocket science!’
I am having brain surgery on Friday. It’s all happened quite quickly to get an appointment to see a neurosurgeon and get booked in for surgery. This wasn’t part of my plan, but it looks like I have no other choice. One of the lesions I had treated with stereotactic radiosurgery five weeks ago has continued to grow, there’s lots of swelling around it, and it is at risk of pushing into other parts of my brain.
I drafted a post about this and its wonderful history two days ago and I ended up writing over 3000 words, which is far too long for a blog post. I’m going to try to split it over a few posts to give you the back-story to my first brain lesion and the three newer ones.
The brain is a wonderfully complex thing and I really like mine. I think it’s definitely my best organ and it has served me well over the years. I like the way it works. I like that I have a really good memory. I like my personality. I like the way it processes events and conversations. I like its ability to communicate. I like its creativity and imagination. I like all the weird and trivial facts that are locked away in the recesses of my brain.
I guess that’s why it was so disappointing when I learnt earlier this year that the breast cancer had spread to my brain. It felt like it could be the beginning of the end. What if it starts interfering with who I am as a person? I like me. My people like me. What if I change and I have no control? I don’t want to leave this world as someone else. I want to be me.
So far, so good though. I think. That’s the other scary thing. Maybe I won’t know I have changed. It might only be obvious to others because my brain changes and convinces me that’s who I am now. I might think I’m still the same, but really I’m different.
As I explained in a previous post, I was reducing my steroid dosage following stereotactic radiosurgery on three lesions on my brain when disaster struck in the Barossa and I got a severe headache and vomiting again. When I returned to Brisbane, my medical oncologist sent me for a CT scan of my head, chest and abdomen so we could see what was happening with the lesions and if there was anything new causing the headaches and vomiting or if we were just dealing with post-stereotactic radiosurgery swelling. The scan showed there was a lot of swelling still on my brain, and it also looked like the cystic lesion in my cerebellum was active and continuing to grow.
My radiation oncologist presented my case to a bunch of neurosurgeons, neuro-oncologists and neuro-radiologists last Friday and the consensus in the room was that I needed surgery to remove the lesion because it was not getting smaller and it was beginning to push into other parts of my brain. The increased steroid dosage has been keeping the headaches mostly under control, but I do have some problems with double vision and balance. That appears to be getting worse. I am typing this with one eye closed so I can see the screen properly. I have spent most of the past week with one eye closed so I can see what I am doing. Chatting to the neurosurgeon today, he did express concern about the vision problem and that something else might be affecting my vision that is not related to the cystic lesion in my cerebellum. He mentioned Leptomeningeal disease, which is not the first time that doctors have held suspicions that I might have it. Hopefully not. But we may know more after the surgery.
I am having brain surgery on Friday. My skull is going to be opened up and a neurosurgeon is going to tinker around in my cerebellum and hopefully remove this cystic lesion in one piece without damaging anything else in there. The operation will probably take about two hours, I will be knocked out cold for it, I should be up and walking around the following day, and hopefully I will be able to come home on Monday or Tuesday. Hey, it’s just brain surgery! And in the scheme of things, given all the many risks associated with any surgery and particularly brain surgery, this shouldn’t be a big deal but it is to me right now … no driving for six months. I think it will be like when I was first diagnosed and was told I would have chemotherapy and lose my hair. You focus on how you’re going to lose your hair. Now I don’t give a damn about losing my hair. Hopefully that’s how I’ll feel about the driving in the future.
This may be my last post for a while, which is very disappointing as I feel like I’ve just got started with telling my story! I might not remember any of it after the surgery as it’s all locked in my memory. I have no idea how long it might take to recover and start feeling normal again. There is a chance I won’t ever feel normal again. This wonderfully complex organ called the brain is a bit of a mystery. No one really knows what will happen. The priority is to ‘do no harm’, but sometimes you don’t know if any harm has been done until the patient wakes up again. Then you don’t know if that harm is just a short-term effect or a long-term effect. It’s a fascinating little organ.
I am feeling positive about the surgery. I know it’s the right thing to do. Of course, it doesn’t stop you thinking about the risks. What if it causes permanent damage? What if I can no longer live independently? Will I be able to communicate? Will I need rehabilitation to learn how to do simple tasks again? What if it changes my personality? What if I develop a blood clot in my brain after surgery? What if it causes a stroke? What if I don’t wake up again?
So I am hoping to return to the blog soon and let you know how it all went, but I’ve got no guarantees that I’ll remember my story or I’ll still be the same person. Stay tuned. Looking forward to my next dessert. Remember, life’s too short to skip it!