(Original title – Gilderoy Lockhart)

Do you know what really grinds my gears?

Watching TV shows and movies about cancer, where people have perfectly smooth bald heads because “chemo”, and they keep all of their eyelashes which are coated in layers of mascara and super long and beautiful, and the most perfect eyebrows to frame their faces.

It really gives me the shits.

They also get away with not being bloated from medication, without looking completely dead in the eyes, and even the dark circles under their eyes from anaemia and fatigue somehow just make them look more glamorously ill.

There is an abundance of movies and TV shows around at the moment; and whilst it’s nice to see such a fucking awful insidious disease on TV, to me it seems like cancer is the current disease du jour.

The sick people on TV have beautiful glowing skin and perfectly shaped nails. I only have glowing skin when I’m having a super intense hot flush or taking oxycodone for pain.

My skin is patchy and ranges in dryness from “face dandruff” to “skin of a dinosaur”.

My nails are misshapen, chip, split and break if I even think about looking at them.

If I stub my toes on anything, the first thing I say apart from swearing the house down because I am so much more pain sensitive, is “well, there goes that toenail!” I haven’t lost one yet, but I’ve split two of them vertically and lost parts of them. Same goes for fingernails.

The womens’ eyebrows are perfectly shaped and lush and full, and mine are patchy and greying and for some reason, affected mostly from the outside edge. I miss what they used to be, in all their misshaped, untamed glory.

Their eyelashes are thick and full, and they can wear makeup and not have to worry about rubbing all their precious eyelashes out when they take it off, which is something that has kept me away from even using false eyelashes. I don’t want to risk pulling out my sparse, stubby, brittle little eyelashes if I get glue on them.

Honestly, I get it. TV and movies are glamourous, and cancer is not. An actor is unlikely to shave their eyebrows off (or wax for better effect), but for fucks sakes, a makeup artist could at least cover them with makeup and disappear them a little if not entirely. Yeah, you look like some weird, bald alien with zero body hair, but so the fuck what? At least you’d be giving a more accurate physical depiction of the utterly unglamourous world of cancer.

I get compliments all the time from my treating team, friends, family and strangers about how healthy I look. Sure, I might look it some days when I’m not battling dark circles under my eyes and my skin sloughing off all over the place like snow and I’m able to laugh and think reasonably clearly. I put it down to the fact that I am at least 20 kilos heavier than I probably should be, so my body has plenty of excess energy it can pull from the abundance of fat stores around my body. It’s almost like I’ve been hoarding weight in preparation for cancer. But the truth is, I am not healthy. I have great days where I have so much energy, I have good days where I can do a wide range of activities, I have average days where I’m flat and feel fatigued, and I have bad days where I’m battling nausea, fatigue, a tiredness that is deep in my bones, and pain that contributes to the fatigue. And most days now are a combination of all of the above. I start slow, hit my stride from 11am – 3pm, crash afterwards, then 9pm – 11pm I have a little bit more energy again. This is why most of my posts happen later in the evening, because that’s when my brain wakes up again and I feel inspired.

The people on TV and in movies seem to be able to get on with their life in a pretty normal way, only succumbing to the side effects of chemo because chemo is the “big bad” and it’s supposed to knock you around. I felt the best I had in 12 months while I was on chemo. Yes, it knocked me around and made me feel ill and took away my ability to enjoy the warm rays of sunshine without burning to a crisp, and also completely obliterated my immune system, but I felt good. I suffered with relatively few side effects, few of which you hear characters complain about.

Stop reading now if you don’t want a graphic description of side effects (poop and butts are talked about at least three times).

In no particular order, here is a list of side effects I experienced and you don’t see on TV:

• Day 3 post-chemo nausea, which gets so intense you literally cannot think of anything else aside from how sick you feel and whether or not opening your mouth or having a conversation will involve vomit falling out of you uncontrollably.
• Cannulas not being inserted properly and tissuing into the surrounding area, causing swelling and ongoing pain.
• Haemorrhoids. Regularly. Feeling like someone has punched your anus repeatedly until it’s bruised and then bleeding is not pleasant. These come in both internal and external versions, and sometimes you are #blessed with both at once.
• Constipation that causes haemorrhoids to open, thanks to heavy duty antiemetics and any kind of pain medication – Panadol does this to me, as does Oxycodone. Chemo causes your digestion to slow right down which doesn’t help either.
• Diarrhoea on open haemorrhoids is a whole new circle of hell, people. Think rubbing a fresh cut chilli directly into your eye, but the eye is your open bleeding asshole, and the chilli is running through in waves. You will cry when this happens. And it happens a lot. You will even call 1300 60 60 24 (Nurse On Call) to see if there is anything that can be done to stop the pain that continues afterwards because it’s not worth calling the hospital for advice from the on-call nurse at 11:30pm after you’ve been sitting on the toilet for 40 minutes because they’ll probably take three hours to get back to you and you need relief immediately.
• Sore gums and teeth, that even brushing with an extra soft toothbrush is painful. Chewing hurts, drinking hurts, heat hurts, cold hurts, tepid water hurts. It’s like the pain you get when your braces were tightened as a teenager and it lasts for about a week.
• Day 3 – 5 post-chemo body aches, from your nose to your knees; unrelenting pain like you’ve worked out too hard and can barely move.
• Weight gain from chemo, also probably from poor nutrition and lack of exercise.
• Loss of strength, where carrying a 5kg bag of groceries is an impossible task.
• Dry eyes. That episode of The Simpsons where all the kids are like robots and blinking in unison and you can hear them blinking? I could hear myself blink. There is no relief, even lubricating eyedrops only worked for 20 – 40 minutes before needing to be reapplied. This lasts for about a fortnight.
• Fluid retention in my left foot, something which is only just correcting itself now thanks to prescription medication.
• Chemo brain, where I forget my address, words, names of people, names of things, and whether I took medication or not.
• Loss of appetite, to the point where I could go probably four days without eating and still not be hungry. This is hugely problematic, despite wanting to not be a part of the #fatlife.
• Loss of nasal hair. You don’t realise how much those little bastards warm the air as you breathe in until you don’t have any left. The brain chill of breathing too deeply too quickly in an airconditioned room is whole new kind of pain to experience inside your head.
• Hot flushes that strike you so suddenly you feel like you’ve just stepped into a personal sauna. Every item of your clothing must be removed immediately, and then put back on immediately after that because you get cold because you’re literally sweating and they need to invent socks that are only half-socks because you’re constantly pulling them on and off. Oh, and if you’re anxious, stressed or angry, the hot flushes are way more intense.

I did not enjoy chemo. I hated getting stabbed with needles, bloods being taken, poison being administered as a treatment to this life-threatening illness, and honestly I don’t know if I want to go through it again if it ends up being the next option on my Wheel Of Treatment. I think I’m struggling a lot at the moment with the fear of the unknown, with the waiting weeks for my next round of scans to be done.

It is nice to see that TV and movies are showing cancer more regularly, because it is nice to see a small part of what I’m going through reflected on TV. Something that’s not really reflected though is that whilst technically there is a choice to not have treatment, it is also not a choice because by refusing treatment we are dooming ourselves to die. I’m in a position where I am doing the treatment that my team is suggesting, because I am not ready to just have done with it. I still have spirit, what people might call “fight”, in me, and as long as I have things and destinations on my bucket list, I will keep going until I’ve done all that I can physically enjoy doing. I’m hoping that’s at least 12 months away, but you never know what surprises cancer has around the corner for you.