Offensive Thinking

Brain tumors suck. Hi, I'm Patrick btw. This is my cancer blog. My "normal" stuff is over here.

So, everything is ok now, right?

Liberty Square in Taipei, Taiwan, March 2012
Liberty Square in Taipei, Taiwan, March 2012

“So, everything is ok now, right?” If you’re a brain cancer patient, you’ve probably heard that question, or a similar one, before. Actually, it is more of a statement than an honest question. Don’t get me wrong, I know that many people asking this don’t mean any offense. I mean, most of the time I sure feel like everything’s ok, and that’s a good thing. I do my old full-time job, exercise regularly and generally lead a normal life, all things I’m very grateful for. If you meet me for the first time, you wouldn’t know that I have brain cancer. Hell, I guess I look and feel healthier than many other people do.

It’s Not Just a Common Cold

It’s just such a careless way of asking, and I want to explain why in this blog post and what feelings you might invoke.

First of all, it sounds like you’re asking if my cold from last week got better or if my broken leg is ok again. It also makes me automatically and unconciously put you in one of the following categories of people:

  • You are uncomfortable with a disease like cancer, because deep down you know that this is something really bad
  • You want to say something positive because you don’t want to discourage me or make me feel like you’ve already given up on me
  • You can’t or don’t want to imagine that I’m not ok, because that reminds you of your own mortality
  • You don’t know much about cancer, because it’s something only other people get
  • It’s just something you say so you can start talking about a different topic, because discussing cancer makes you feel uncomfortable

Now, I don’t want to say you really are doing it because of one the reasons above. Before I started to learn about cancer, I guess I was guilty of one or the other point, too. With some people I also sense that they are asking “everything’s ok now, right?” because they genuinely don’t know what having cancer means. They might’ve also heard of people being “healed” from cancer and automatically assume that because I had my craniotomy and the chemotherapy and I’m not dead now, everything really is ok now.

Brain Cancer Facts

To debunk the myth that everything’s ok now, let me give you some quick facts about brain tumors:

  • They’re incurable. No matter how much tumor they tell you they’ve resected (even if it’s 100%), if it’s malignant, there will always be tiny tumor cells in the surrounding tissue that can start to multiply again, bringing the tumor back.
  • Unfortunately, that means it’s mostly not the question if, but when the tumor will come back. We’re all hoping for a very long “when” here, but that is the current medical status we’re talking about.
  • When brain tumors recur, they tend to mutate as well, and not in a good way. Mostly, they get worse. My anaplastic oligoastrocytoma might very well come back as a glioblastoma, the most aggressive form of brain cancer
  • Life expectancy, at least for the more aggressive varieties, is still measured in months, so it’s pretty low for many of us. It is a very individual thing though, so please never take any statistics about survival times as a given. I, for one, am certainly not done here yet, it’s only been 15 month since diagnosis!

If you’re reading this and got newly diagnosed, please don’t be scared by the stuff I say above. If you look around the community, there are some of us living with even a glioblastoma for 20 years already, so never give up hope. They might be the exception, but who’s to say you’re not going to be the exception, too? I just wanted to make my point that not everything’s peachy after a successful craniotomy or chemotherapy or any other treatment.

Current (Post-Operative) Treatment

For me, living with brain cancer means that I have to go to the MRI every 3 month, where they stick a needle in my arm, inject a contrast agent and then put me in a tiny and very loud tube. Every time I do this, I fear that this time, something is different in the pictures and I have to undergo treatment again. I take anti-seizure meds that prevent my poor, damaged brain from making my right side shake uncontrollably from time to time (or even have another grand mal) and I have a huge hole in my head where once the tumor was (looks cool on the pictures though).

All in all, I’m one of the lucky few who, at least at the moment, can live a pretty normal life.

“Ok, now I’m scared of talking to you, how should I ask if you’re ok?”

It’s not the question if I’m ok now, it’s more the way of how people sometimes ask it. That’s why I picked the question “everything’s ok now, right?” as an example, because it’s more a statement than a question (I think I’m repeating myself, don’t I?). I’d rather have people ask me something simple like “How are you?” or “Is everything ok right now?” I’ll also gladly answer any specific or unspecific questions about brain tumors, cancer or my latest treatments. It’s common sense, basically.

I hope this blog post doesn’t sound too bitter, it wasn’t meant to. Please keep asking questions, I really want people to get educated about brain tumors and cancer in general, so never be shy to ask. Just don’t make it sound as if you don’t really care. Because if you don’t, then don’t ask just because you think it’s expected from you.