When I received the news that I was going into chemotherapy in 2020, the one side effect I was warned about was fatigue. I ran a marathon in 2018 so I figured I knew what fatigue was. Also, I’ve suffered some bad vodka hangovers so I thought I knew what to prepare for.
Nope, not even mildly prepared. The best way to describe fatigue is a shadow. It’s always there but you can’t see it. It’s the effect, not the cause so it lingers in the background while you try and focus on the main issues.
After the surgery, it was hard to distinguish between fatigue or if I was drowsy from the pain meds. After my first round of chemotherapy, I knew exactly what fatigue felt like and also how debilitating it could be if I didn’t keep on top of it.
From the first round of chemotherapy, the one food that I’ve craved was potatoes. In any form, so long as it was cooked (I haven’t tried raw potato but I imagine it leaves a lingering after-taste.). At the moment, it’s potatoe wedges but in the beginning, it was hot chips. Then it moved to plain chips, mashed potatoes, scallop potatoes, boiled with a bit of butter. Also, it had to be chunky cut. Maccas French fries left the most metal-like after-taste in my mouth. Not cool. Potatoes helped me manage my fatigue and nausea so that was helpful.
Fatigue hits me the hardest in the first 3-5 days. Partly because of treatment and partly because I go straight to work after. The clinical trial wasn’t so bad. The fatigue was more from the constant pain I was in because one of the tumours wanted to make its presence felt. So it decided to press on a nerve. Not tissue, fat or a vein. A fucking nerve.
Fatigue leaves you staring into space blankly and not in a hipster, appreciating your present self, meditative way either. Your head feels like it weighs 10 kgs and it’s spinning like a CD that’s about to start playing. Fatigue makes you wonder why the trees look so alive and why you can’t be that alive. You still have 20 thoughts running through your head but you can’t bring yourself to get out of bed.
So the first thing I realised is that fatigue and tiredness are not the same thing. I can be a exhausted and drained from everything I’ve done that day. I’ll take my sleeping tablets and drink chamomile tea. I’ll get tucked into bed with my meditative music and I’ll sleep for….one hour.
Fatigue mixed with general anxiety can make it impossible to sleep some nights. No matter where I am, sleep has to have some element of silence. When my emotional state is compromised because I have no physical energy to sleep, I start to have the most twisted thoughts. Also, they never make sense. They’re just there, reacting to what I’m feeling and how I’m coping. Then the other side effects become amplified with fatigue. Back pain from the blood thinner, stress from my discomfort, drowsiness from the morphine, adrenaline from fear, fear from never knowing what’s happening next and just being overwhelmed by everything. The amount of times I’ve planned my funeral at 2am, it’s become a ritual. Also, if I can get a disco unicorn, it’ll be epic!
Fatigue with this Folfiri treatment has been tricky. Jelly legs after they disconnect me from the treatment, headaches and from being so drained, I cannot bring myself to eat. Eating feels exhausting. Even taking a supplement drink is pushing it too far. The amount of times I’ve gone to bed starving because I’d rather be hungry then have to sit at the table and physically open my mouth is worrying. My jawline has gone on strike because of this treatment and now my jaw looks like a tetris cube. Also, I take two bites then my jawline starts to hurt. Turns out you have to use it like a muscle. The less you use it, the more difficult it is to chew. I don’t know why I found that so surprising.
Talking about jelly legs, it’s the weirdest sensation. When you’re walking and you intentionally try to bend your knee so you can deliberately lift your leg and put your foot forward. Then you do the next leg. It is so weird telling your leg to straighten after bending your knee! Why do I do this, you ask? Because if I don’t, I forget how to coordinate my legs. My brain is too tired to process that. So what happens is at any given time, I’ll forget to bend my knees, lift my leg or foot and fall over. Then I’ll just stay there and look blankly at the floor.
Fatigue has become my constant companion. We sleep (sort of) together, get frustrated together, shower, walk, eat, go toilet, do treatment then wonder when it’s going to all end. The fatigue that is. I don’t know how I’ll feel once it fades. I think I’ll literally take everything and just run as far as I can. Do as many things as I can and complete projects that I’ve been meaning to start.
The one thing fatigue has forced me to do is pace myself. You can only do so much before you feel like you’re about to collapse. To be honest, I have collapsed a few times but they weren’t too bad. Just sat in the changing rooms or clung onto the counter while I got my legs to straighten out. Then once I got on the train, I’d fall into the deepest sleep. The white noise and constant rhythm of the moving train is so relaxing!
Working with fatigue makes you feel like the most hard wired ferret, darting your eyes from left to right, writing to do lists because your short term memory is fading and God forbid you have a 10 minute nap during the day. You could have built a house in those 10 minutes. Your mind and body are pushing and pulling in multiple directions. You become a working shell, fuelled by coffee, a croissant and 2 supplement drinks. The lack of appetite makes it worse. Sooner or later I’ll crash. I’ll cross that bridge when I get to it.
So back to the pacing yourself thing. I’m learning to say no or reschedule non important things. I go by this rule of thumb: if it doesn’t help me pay my bills or save my sanity, then it can wait. I have been told and offered ways to support me, financially. Most of them go down the gofundme(too difficult) route or centrelink. I really can’t bring myself to go on the dole. The cancer makes me feel comprimised, getting that support would make me feel defeated. I’m not saying people who are getting financial support are, good on them for taking that step to look after themselves. Having this level of independence just feels vital to me. So with all that said, I am now a deranged (but very cute) ferret that can provide great customer service!
The one thing I always wonder is “how far can you push yourself before you can’t even lift your head?” Is that even a thing? I try to plan things to help with my fatigue but then I notice how my elbows get a jolt of energy and how you can use that to create a new car. Keeping myself busy all day in the hope that my mind will just deflate. I’ve had nights where it deflated for 3 hours! I was so wide awake those days. My therapist says I should make time to go to the beach. It’s the one place where my whole body just relaxes. The thing is I got promoted at work so the ocean will have to wait.
Talking about my mind; it is the kryptonite to resting. I’m naturally an overthinker so when lack of sleep is a side effect, your thoughts run more marathons in your head than any athlete in the Olympics.
My Aunty said I should try to dream of sleeping under a coconut tree. When the weather is warm and I’m in between treatments, I will go to a Cafe or walk around the block and dream of the shady coconut tree. The ocean breeze and the warmth of the sun. The relaxing sounds of waves coming in and out and imagine lying in a hammock or just sleeping on a mat.
Then I snap out of it and start planning all my appointments on my phone then figure out how I’m going to survive the week. Fatigue and I have places to be and I have to organise it now. If I don’t, I’ll be too tired to type it later.