10 Things About Cancer Treatment Nobody Talks About
I’m a full year out of the madness, 366 days (it’s a leap-year after all) on from treatment for a “grade two astrocytoma with grade three elements.” It’s a posh way of saying I had a brain tumour, and it was sort of cancerous. That’s a full year on from feeling like shit every other day, wondering why your body has betrayed you and just how it’s going to get worse.
I can now say, with a weird sense of guilt and a weirder sense of terror that “I’ve gotten better.”
Kind of better. I don’t want to jinx it.
Over the last while, there have been times when I didn’t feel like I was getting better: I felt like I was getting worse, circling a drain on a downward spiral towards an End. I was diagnosed in May of 2014 and treatment took the guts of a year. That year involved surgery, radiotherapy, chemo, all the usual stuff; in comparison, diagnosis took a couple of minutes.
The problem is: people don’t talk about treatment. Cancer is a horrible word, but a lot of people think that treatment means “getting better” not “having its own sets of problems and issues.”
So I’m here to drop the vague tones and the whispers, and give 10 of the worst things about cancer treatment.
In no particular order.
What do you think this is, Top Of The Pops?
So let’s start with the big stuff, yeah? The biggest part of my treatment involved a waking craneotomy: basically, they kept me awake while they poked around in my brain. It was this sort-of-scary, sort-of-crazy-cool couple of hours that led to some of the most interesting moments of my treatment.
It never crossed my mind to go into medicine; but there’s still a part of me that’s intrigued by surgical practices. You know, the tools, the sights, sounds and smells (I’ve watched far too many movies and TV shows.)
Imagine being awake and getting to participate in your own surgery?
That bit was cool.
The sounds of doctors and nurses talking to each other? I’ve no problems with that.
But the biggest challenge here was the sound of a surgical saw, especially when it’s pretty damned close to your left ear. That sound was a constant reminder that “someone is drilling open your skull right now.” Which in itself was a constant reminder that there was a malignant tumour in my brain.
That sound has stuck with me. Not quite the thing that wakes me up screaming from a nightmare, but there’s an unpleasant synaptic response that links that sound to the physical sense of fear and pain that go along with it. (No matter the drugs I was in, it still fucking hurts getting your skull drilled open.)
Lawnmowers seem to operate at about the same pitch as a bone-saw, just so you know. Really makes for fun when the neighbours are cutting their grass and all you wants to do is sleep.
I’ve become uncomfortably aware of a lot of things over the last few years:
- of what MRI scans of brains look like (and what they don’t look like. TV shows use what look cool, not what looks factual);
- of that thin, fragile hair after you’d had chemotherapy and radiotherapy. One year later, my hair still isn’t back properly;
- of the scarring and bumps that are still there, years later. At least when they’re old, you can cover them up; when the wound is still pretty fresh, it means every shower is incredibly complicated, and things are just a bit too raw to wear a hat and cover it up;
- of the look that you get from people who know what you’re going through, or have gone through, and they don’t know how to say it to you, but they need to communicate that emotion somehow;
- of that tube that was within my line of sight whilst having my waking surgery that acted as a drain to provide suction of blood and goo from the surgical area. Every couple of minutes this little trickle of blood would get sucked along it, making me acutely aware that blood was being sucked from my brain. Where there was a tumour.
That tube is part of the reason why I’ve been avoiding the dentist since my surgery.
Oh, and there was also the bag that I had to carry around with me for a while. A few surgeries later, when I was leaking CSF (cerebro-spinal fluid) I got a drip fitted in my spine and got my own little bag to carry around with me, filling up with CSF. Like a colostomy bag, but not in my colon. CSF is meant to be clear, but whether I had an infection or something like that, the contents of this bag were not clear; they were a cloudy, thick beer-like broth that just kept coming until the drain fell out of my back and couldn’t go back in.
And that, kids, is why I don’t really like drinking beer any more.
After the surgery came the worst after-party of my life: six weeks of radiotherapy (alongside chemo) followed by six months of chemo.
I always feel a little bit guilty when I refer to the type of chemo treatment I received as chemo. I took tablets, or medical chemo, so I’m one of the lucky ones who got to have treatment in private. For five days a month, I popped tablets in my own home and went back to bed and tried to pretend like it wasn’t happening; I didn’t have to sit there with drips and drains and hair-loss (which had already happened with radiotherapy.)
Those tablets tasted like pure death, and for the next couple of days of taking them, I felt like death barely warmed up. And every smell threatened to summon that death-scent once more.
The smell of paint.
The smell of deodorant.
The smell of freshly-cleaned clothes.
What sort of conversation would this be without some mention of my bowel movements? I did say I was going to talk about the stuff that nobody talks about, right?
So here’s the thing: chemo makes you feel sick, like full-on vomit and hugging the toilet sick. And as if that weren’t tough enough, you have to keep your weight steady so your dosage remains much the same for the entirety of your therapy.
That means you still have to eat, even when you really don’t want to.
You still have to eat even though you threw up a few minutes previously and everything in your mouth tastes like chemo tablets. And everything that comes out of you smells like chemo tablets, and it just feels like your entire body is turning into this little factory of chemotherapy where you are more cancer-treatment than man.
With this in mind, your doctors are more than happy to prescribe anti-nausea tablets to you. Did you know that anti-nausea tablets are highly constipating? They make it all the easier to get the food in, but it’s not so easy to get it out of you.
More than once, I over-relied on anti-nausea tablets (one time in particular to get me through Christmas and the smells and tastes of that season.) They got me through everything, but also meant a few hours of sitting on a toilet desperately trying to get everything out of my system.
It took about a month after chemo for my bowels to return to normal. But given that chemo continued for six months, it was a very long time before everything got back to normal and over that period, nothing was consistent: one day I was shitting stones of agony and the next was a movement so soft and inconsequential it was embarrassed to even make an appearance.
Nope, nobody likes the word ‘cancer’ and everyone avoids it as much as possible.
Which is sort of alright in one respect, because it means you don’t have people saying the word ‘cancer’ around you all the time.
It’s also kind of tough because it means every time you hear the word, you have to make yourself used to it all over again. “What’s that you have to say about cancer? Oh yeah, that’s the thing I’ve dealt with. oh, yeah, I’d forgotten that bit.”
No, I hadn’t forgotten. I’ll never forget. But avoiding the words doesn’t make it any easier; quite the opposite actually.
And then there’s the numbers. Numbers count as words here. Numbers that suggest how long you might live.
Numbers that go alongside words like “morbidity” and “survival rate.”
When you’re having cancer treatment, you have to deal with those words: you hear them a lot and they weigh heavy on your conscience until they keep you awake at night and haunt your napping-dreams during the day.
Everyone has a cancer story, whether it’s their own or one that they were (un)lucky enough to be a part of.
Fuck, I’m sharing my own cancer story right here and now.
But when you’re in the middle of treatment, there are a lot of people who’ll feel the need to tell you their story. In a lot of ways, those things are really helpful, they give you a little bit of a boost, they let you know that you’re not the only one to feel like this.
But I guarantee that for every five stories you hear that lift you up, there will be someone who desperately wants to tell you that you’re doing it wrong.
“My aunt didn’t even have radiotherapy, and she’s fine now.”
“My friend Barry had chemo, and that’s really what killed him in the end.”
And of course, the worst of the lot.
“But you’re alright now, right?”
Nope, not going into too much detail on this, but I’ll mention a few things.
Everything that’s going into your body tastes and smells like death; and everything that’s coming out of your body isn’t much better.
And everything that’s coming out of your body may be toxic, and while that’s the point because it’s taking your cancer away, it’s also in danger of fucking up someone else’s body as well.
When your entire body has betrayed you and decided to fuck you over, it doesn’t feel particularly sexy.
Even worse, when the people who are important in your life are tired and upset and emotional, it’s not very sexy for them either.
When you’re sick like this, for such an extended period of time, you’re craving some moments of clarity and positivity, and in some cases, that is a level of intimacy. It might not even be sex; it might just be a kiss, with the knowledge that your breath smells and tastes like just another dead thing.
That level of intimacy is completely ruined by how disgusted you are by your own body and the sights and smells that are moving through it. And you will be terrified that other people will feel that as well.
I mentioned that everyone has a cancer story, and a lot of people will share those. A few people will share stories that you really don’t want to hear, and you shouldn’t judge them for it; it’s a small message to say “I can barely imagine how you feel, but I also can’t imagine it. But I am here for you if you need me.”
And there are the people who will disappear from your life as if they were never there.
Cancer helps you tell the difference between true friends and fair-weather acquaintances who are only there for the good times.
To everyone that I haven’t spoken to in years and took the time and energy to get in touch and wish me well, you have no idea what a boost that was.
To the people who disappear, be aware they and their behaviours are worse than cancer.
There’s a lot of it. Every headache feels like a threat that cancer is coming back to get you again; every smell is a reminder of how shit things felt the last time you got that whiff.
Every ad on TV has an absentee parent and you wonder if that absence was caused by cancer.
Every beep of the MRI machine could be the beep that finds a new tumour.
Every time you cross the road could be another car to hit you and make all that cancer and treatment pointless because ultimately it was a car that got you.
Cancer doesn’t go away or come to a nice, quaint little end.
As if your body hasn’t been through the worst, it’s not like your emotions are taking a back seat. Nope, you fight them off and push them down, just to be able to cope with the ‘now,’ but then they flair up and decide that you really should think about something else.
Usually, those feelings come at 2AM when you’re desperately trying to sleep.
Or when you’re on your own in an MRI machine.
Or when you’re on your own.
And like the best things to do with treatment, things aren’t even consistent: one minute you’re hyper, the next you’re depressed and the next you’re just pissed off that some other friend of an acquaintance has just passed away from cancer and you’re kind of terrified that you’re next on the list.
Also published on Medium.