Move like a mollusc


Almost every day I try to go for a walk. I say walk, but it mostly resembles a cross between a distracted toddler and a snail who’s lost its slime. I shuffle along, overtaken by the most elderly of human beings. Because I look pretty hale and hearty, passersby don’t quite know what to make of me. I often get looks of confused pity mixed with impatient skepticism. As though my youthful shuffling gait and non-rattling deep breathing is an affront to their box of visible disabilities.

On these ‘walks’ the thing I dread most is the kind motorist.

I have to cross at least five roads on my challenge to get to the next cafe in my mobility challenge. As I approach the borders of the pedestrian lands and enter vehicular territory, my control over the pace I can handle shifts. The car slows down and an anonymous hand waves, flicks or sometimes merely a finger gestures me to cross.

My heart sinks with the stranger’s kindness.

The unwritten rule of allowing a pedestrian to cross in front of an approaching car is that said walking human will not inconvenience the motorist further and will speed across the road in as little time as possible. This part of the deal I cannot honour.

I sigh deeply, looking like an ungrateful wretch before we’ve even begun. And I’m far too British to wave the car away. I’m too afraid of us getting stuck in some kind of waving loop, each person trapped in competitiveness politeness. So I obey the flicking hand and move into the road.

Except I don’t speed up. I can’t. I break my part of the bargain. Instead I keep my eyes firmly rooted on the road ahead, each slow motion step make me hyper-aware of the rising impatience of the driver. As though they were standing right behind me, puffing irritated air into my ear.

Meanwhile other pedestrians have taken advantage of the situation and sprinted past me, highlighting the sluggish pace of my own body even more. I act as a kind of slow motion lollipop lady.

I know if I speed up, if I push myself, there will be a price to pay. Much as I’d like to give the gift of ten extra seconds to those charitable drivers, I can’t afford the cost to myself. If I push myself it has to be on my own terms and for my own benefit. Because nothing else is worth the ramifications. Too long or fast a walk could mean two days motionless and gloomy on the sofa. That I can not bear and it’s those kinds of days that challenge my mental health most deeply.

My life is all about balancing energy. Conserving it, spending it, generating it, paying for it.

Tiredness is normal after surgery. The anaesthetic has a profound effect on your body function and a hospital stay can disrupt circadian rhythms. Being less mobile can affect your muscle mass. Opiate-based pain medication can make you drowsy and slow your breathing. If you’re not breathing so well, then oxygen isn’t getting to your cells and they’re not doing their job fantastically well.

Your wounds are also a problem. Not only has your body got extra work to do to heal, meaning even while you’re sitting very still you’re actually working a full time job internally. But your wounds are continually evaporating away precious water, like steaming cracks in the Earth’s crust. During my pre-assessment appointment, the anaesthetist educated me that skin holds water inside our bodies. Seems kind of obvious but when our skin is cut, water literally evaporates out of the tissue that’s exposed. This is why the nurses kept filling my water jug over and over and over. Dehydration shrivels your brain and your cells need water for just about everything.

So there’s lots of reasons to be tired, even fatigued. I oscillate between the two but tiredness is the set on which my life is performed. Fatigue means the show cannot go on. Then only sleep or withdrawal will renew me. It’s tricky to know when I’m tired but can regroup and when I’m fatigued and must stop. Sometimes there’s a long delay before I actually feel the effects of whatever I’ve been doing. I have to be a kind of tarot reader for energy levels.

If I’m really unlucky I could become chronically fatigued, meaning the condition will be ongoing and long lasting. Luckily I don’t have the predictors for that possibility. I wasn’t depressed or had anxiety before surgery. My levels of general health and fitness, aside from the deadly disease, have set me in good stead.

For now I work with what I have on any given day and try to strive for more. Or accept less.

One slime-less snail move at a time.

Steady State


So I’ve been quietly getting on with surviving this bout of side effects. Helpfully two sets of different ones arrived simultaneously, the nausea and flu-like symptoms. Thank you chemo for a new shiny kick in the ass. They all arrived on Saturday on the night I made a huge noob mistake of watching a fairly grim movie ‘Snowpiercer‘ to pass the time. Note to self: do not watch end of the world films when you’re struggling to keep yours on track. My Saturday night was filled with terrified shivering, imagining babies being eaten and too frozen in place to even get up and put my socks on. I had also been on the breast cancer forum reading that day and heard that one of the women who posts there had died. Generally the forum is a huge source of support for me and only occasionally does it throw up this kind of curveball. I was devastated. I didn’t even know her, hadn’t read any of her posts. But hearing this news shattered my Very Useful Illusion that this is all going to be OK.

Positive thinking is my most useful ally right now. It has been shown not just to be woo-woo babble dribbled out by wannabe gurus but has hard solid biological effects on your brain that can help you take action to improve your situation. So it’s really important for me to maintain it. But when side effects have kicked in, real people start dying and Captain America is eating babies, it’s also really important to recognise that some things out of your control are gonna come up. I think it’s equally as important to accept the world as a changing place where your perspective on it can be shaken. If I deny that that night happened and erase it, perhaps it gives it more power than if I faced it and then let those morbid feelings float on up and out. It’s a tricky balance to get right. I might have talked about this in a previous post and it’s a constant challenge.

Change and the striving for balance are fundamental processes driving the Universe in a non-woo way. As with ecosystems, the atmosphere, cells themselves, most things are changing constantly, moving. But they are also seeking homeostasis, a steady state. When an animal population decreases or increases, the surrounding ecosystem compensates to accommodate that change. When more water is released into the atmosphere, the rest of the system will adjust. They are closed systems. (Forgive my lack of footnoting, I will get to that another less vomity time.) What I’m trying to say is that our lives can be seen in the same way. Always changing, being influenced by forces beyond our control but we are constantly striving to find balance, peace, stability. So I guess the lesson in all this for me is to keep thinking this is all gonna be fine while acknowledging when things are going pear-shaped occasionally. And not watching scary movies.