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.

Bad Hair Day

hairLilah and I just pulled this lot out of my head. I guess it won’t be long now before it gets to the point where the patchiness is obvious and the clippers come out. I thought I was OK about the hair loss but today, seeing it happen, has been quite unsettling. I’m not sure if this is just to do with the hair loss or because I think I’ve caught Lilah’s cold, I’m not eating as healthily as I could be, putting a bit of pressure on myself to do a lot of jobs on limited energy and the washing up pile is growing exponentially. Strangely, the dirty dishes are bothering me more than anything else. Perhaps because it’s the cancer of household chores, replicating out of control and the task I have to tackle that there’s very little help anyone can give with. Maybe it’s time to buy some paper plates.

I did do a bit of research on hair this morning in preparation for this post. As I was struggling to find a good study on the sociological importance of hair in cross cultural perceptions of attractiveness, I realised maybe I was pushing myself too hard. I’m not the only one. Adam sent me this link to an article about a woman with breast cancer who took a picture of herself EVERY DAY during chemo, wearing a new kind of hat and raised thousands of pounds for cancer research. I was impressed. But I noticed she said that some days it was all she could do to drag herself out of bed to do the photo and then go back. I found myself wondering if this was a case of committing to something other than getting well that was actually detrimental to that goal. Is there this pressure we put on ourselves to be amazing and go even beyond normal expectations when we’re sick. To prove ourselves superhuman. And does this in turn put a lot of pressure on women with cancer who are not engaged with this seemingly Herculean tasks?

As usual with all things, I think the answer is complicated. If the blog is helping me feel better about myself, then that in turn will have a positive impact on my mental health. Being mentally well is one of the powerful things I can do to aid my recovery. If, like today, the bell curve dips towards the negative then I’m actually doing damage. The trick is to know the difference. So instead of writing an in-depth socio-political-feminist analysis of hair loss, I’m stepping away from the keyboard and going back to bed with a good book.