Like the title says, fear is a weird thing.

This is one of the free images that comes up when I Googled 'fear'. To be honest this guy seems more cute than scary...

This is one of the free images that comes up when I Googled ‘fear’. To be honest this guy seems more cute than scary…

 

It’s not even one thing; the bitter, hot, sharp fear that you get when you know a fight is about to happen is different from the deep, cold dread you feel when someone you know is very sick and that’s different again from the background fear that comes in when you yourself are sick. The fear that just hums away in the back of your mind.

When I first got diagnosed I felt the hot fear. My heart rate jumped up, I couldn’t hear properly for a few seconds (I think. Memory is even weirder than fear.). I had the same thing when I found out I needed chemo, but both times that fear faded back into the background. I got caught up in just doing everything I needed to do to survive and the fear had to take a back seat. The fear was always there, ready to poke its head out at weird times, but it never went back to being that sharp, intense fear.

Until this morning.

I needed a CT scan to make sure that the cancer has stayed away after we punched it in the face with chemotherapy. I had been anxious before then but nothing too terrible, normally the worst thing about a CT scan is feeling like you’ve peed your pants after they shoot you full of contrast dye. But while I was waiting my turn I felt a sudden rush of real, sharp fear. I felt like I wanted to punch something, preferably while also running away. This wasn’t down to a bad result, I won’t get the results until Thursday, it was just one of the those moments where my body decided that punching seven different shades of crap out of cancer was a viable strategy, and if that didn’t work fleeing down the hallway crying was also a workable plan B.

As bad as the fear was, it didn’t last.

A little kid ran by me trailing a sizable amount of toilet paper (and an exasperated parent) and that was enough to send the fear back into its lair at the back of my mind. By the time the nurse arrived I felt back to my normal self, but just for that one moment my normal self was nowhere to be found.

I hate that feeling. I worry about what I’ll do or say when fear has the reins.

I’m just lucky that little kid went running by.

As far as I can tell, I’m fine. In fact I’m in better health now than I’ve been for a long time, but that fear is always there, waiting for its moment.

I think that’s what I’m most afraid of. Not the cancer itself, if it comes back there are other things we can try, but that when the fear slithers back out into the world, I won’t be able to pull it back in again.

 

 

 

I’m cancer free.

Probably.

We think.

Dammit.

I went in to the oncologist’s special under hospital lair yesterday (like many a lair it is underground, unlike most lairs it’s full of good people and sometimes smells like cabbage). I sat in a tiny room with my wife and I hoped I’d be told that I was so free of cancer they were going to use me as an example to other people as to what being cancer free looked like. I didn’t get my wish, but it was pretty close. My cancer has responded incredibly well to treatment. The fat, strangely symmetrical cancerous lumps that were sitting on my lungs generally being a nuisance have gone altogether. The combined chemotherapy punched them right in the metaphorical dick and they have gone wherever cancers go in the afterlife.

The problem is this little smudge on the CT scan.

It’s tiny. In fact it’s so tiny it really might be nothing. Apparently if I was a normal person it wouldn’t be enough to worry about…but I’m no longer normal. I personally have high hopes it’s just where someone sneezed on the CT scanner, but it’s not nothing, which means as a collective unit we’re all going to glare at this smudge until we know what it is. It’s actually currently too small to know what it is at all, it might even be a perfectly normal part of my lung.

Not my lungs, not even a CT scan...and yet I felt like I needed a picture.

Not my lungs, not even a CT scan…and yet I felt like I needed a picture.

The rest of me is truly all clear. My remaining testicle does not need to be cut off. My lymphatic system is healthy.

I am a very, very lucky person.

So what happens next is surveillance.

It sounds very much like my oncologist is going to be taking up residence in my garden with a pair of binoculars and an unhealthy interest in the color of my pee.

We feel like you should stop drinking Toilet Duck...

We feel like you should stop drinking Toilet Duck…

The truth isn’t that far off. I get checked once per month for the next six months (and by checked I mean blood tested and fondled), then once every three months for a year…then at ever increasing intervals for the next ten years. After ten years it becomes more likely that I’m going to die from something else.

Currently the leading bet is ‘bear related incident’.

Somewhere, a bear dreams of eating my face.

Somewhere, a bear dreams of eating my face.

I was quite depressed yesterday. I shouldn’t have been, I should have been happy but instead I was deeply weirded out and as flat as the surface of a frozen lake. I think I had really been hoping that I wouldn’t have to worry any more, and that this was all over with. In reality that was never going to happen, there was always going to be more follow up, more tests, more visits to the big grey cabbagey hospital building.

It doesn’t matter. I’m alive to do the tests. I’m alive to enjoy the holidays. Moping about will not change the smudge in even the smallest of ways, so I’m resolved to celebrate the fact that I need no more chemotherapy, and to enjoy every second that I possibly can with my family and friends.

The amount of support I’ve had throughout all of this cancer business has been overwhelming. I mean that quite literally, there were times where I took in the sheer number of people willing to help me, and the intensity they carried with them, and my brain just kind of shorted out and I had to go and stare at a wall for a while.

Right now I’m feeling pretty good about the future.

I should probably put some pants on and go and face the day.

 

 

I have a bad habit of writing long posts and then deleting them because they weren’t what I really wanted to say.

I had one written already, I’ve been working on it for two weeks when I could here and there in preparation for finishing chemo. It was…pretty bad. The problem, as far as I can tell, is that the thing I was writing about wasn’t what I really wanted to say and I was going to take four thousand words to say mostly nothing. The upshot was this: I don’t know what to do now I’ve finished chemotherapy. I hate waiting around, and I feel weird about having a second shot at my life, especially when so many people don’t get one.

Fortunately my brother turned up (yep, the one who got attacked by a goose) and I croaked some of my general angst at him ( right now I sound almost exactly like Ned Gerblansky from South Park), and as he does, he had a good clear answer for me: I’m actually a little scared of having a second chance.

I didn’t get a single big cancer epiphany, instead little things started to creep in at the edges. Some of it was small, like I know now that if you’re feeling nauseous suddenly changing position will end badly for everyone. Some of it was big, but slow and gentle, like the realization that I was loved far more than I ever really knew, and how grateful I was for that. I’ve had a lot of realizations about how privileged I am, to live where I do and when I do, because in so many other places and times my disease would have been a death sentence.

But the one that really crept in was the cliche that life is short, and that I should try and make the most of it. The idea that stomping cancer down was a chance to reinvent myself. I’m going to have rebuild myself from virtually zero anyway, so why not try to build a better me? I certainly have every opportunity to do so.

And that’s terrifying.

I can’t just go back to being exactly who I was before all of this. Too much has happened for that. Too many people have gone to the mat (literally in the case for BJJ club who ran two separate fundraisers for me) to just go back.

Too many people don’t get the chance to rebuild themselves.

Fair warning: I’m about to use a role playing game metaphor.

Also, be careful when you go searching for photos about roleplaying on Google. You'll see things.

You were warned: nerdiness inbound.

Sadly it’s not quite like building a character in Dungeons and Dragons. If it was I’d put all my points into charisma and take up acting.  If I could literally just choose from a list of personality traits it would be very easy. Instead it’s like being handed a smudged, torn character sheet someone else has already filled out, complete with flaws and skills, and being told ‘sorry you can’t change most of these things about yourself without serious work, and some of them you can’t change at all….but if you want you can choose to play this a little differently.

That’s why it’s scary. There are no numbers to shuffle around, just a choice to play my character a little differently.

I don’t know what that means yet.

I have a bad habit (I have a lot of bad habits) of making up answers to things that sound better than saying ‘I don’t know’. I often say these things with great confidence and people tend to believe me. It doesn’t make them any more true. So the answer to the question of ‘what are you going to do now your cancer is hopefully cured?’ is not what I would have once said. My old answer, again said with great confidence, would have been something along the lines of ‘I’m going to live my life to fullest’. Astute observers will note that sentence, ‘I’m going to live my life to the fullest’ is almost totally meaningless. It’s a stock answer.

In fact even the question isn’t quite right.

The real question is ‘now what?’ and the honest answer is ‘I have no idea’.

Maybe my big epiphany is that I think I’m OK with that. Obviously I’m not OK enough not to write a long blog post about it, but I’m OK enough that I don’t feel like a bad person for not knowing what to do yet.

Now I just have to remember that.

 

 

 

 

 

 

 

My third chemo cycle starts tomorrow and I’m scared.

You’d think the fear would have hit me late last night, or early this morning. Instead it stabbed me the back of the head while I was having lunch with a friend and I suddenly managed to articulate how I was feeling. It wasn’t just fear in its raw form, it was this thought:

‘What if this doesn’t work?’

I've just realized that those blue things in the background are drywall screws, so that spider must be tiny. Please scale up spider to your own pre-set 'oh shit' limit.

In terms of adrenal dump it was sort of like finding a black widow in your underpants.

 

It’s not like it’s the first time I’ve wondered that, but it was the first time the I felt the deep down ‘oh shit I think I just stepped on a sleeping bear’ fear that made my stomach clench and my breathing go shallow. It’s not like I’m out of options if this round of chemo doesn’t work, but it does mean my options get very narrow very fast and the part of my brain that still thinks I live in a world where stepping on bears is a day to day problem freaked out a little.

Having an internal freak out in a public place is a weird thing.

Then I actually said out loud to my friend that I was frightened, and we talked about that, and then we drank coffee and ate some spectacular food and I found myself laughing and cracking jokes. I felt, and still feel right now, really good. It’s not like the fear went away, I can still feel it sitting there, but I had a great morning despite the fear and perhaps even a little bit because of it. It was a stark reminder that no matter what is happening, I can still have good days. If I’m scared I’m scared, if I’m sick I’m sick, but sometimes there’s a damn good day to be had anyway.

Now I just have to remember that next time. And avoid standing on bears. That seems like a solid life goal.