Move like a mollusc

snail

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.

Don’t Rage Against the Machine

sailboatI was surfing a breast cancer forum today and was a bit overwhelmed by the amount of people crying out in anger and frustration and not being able to express that to loved ones. It made me feel sad for them and a little confused. I guess I am pretty lucky  to have such awesome Bosomers like yourselves around to listen to my every rant but I also realised I haven’t felt those particular emotions that often. I remember clearly the day I got the diagnosis and coincidentally we had booked months before to go and visit our lovely friend Karen in Scotland. The flight left a few hours after I left the breast cancer clinic and the whole journey to the airport is a bit of a blur. Once we were on the plane though, the memories are sharper. There were two young women drinking champagne and giggling a few rows in front of me and I was shouting at them in my head “Don’t you know that stuff could KILL you?” On the other row of seats in front was an older man who dared to stretch his arms in a glib, bored fashion. Didn’t he know that serious and life-threatening things were afoot? How could he be so cavalier with his body movements? A week later on the flight home, Sleazyjet lined us all up in a very narrow corridor for 20 minutes before letting us on the plane. As the heat increased and my claustrophobia ratcheted up, I was a hair’s breath away from screaming at everyone, “GET ME OUT OF THIS CORRIDOR! I HAVE BREAST CANCER GODDAMMIT!”

So I’ve definitely felt that rage and sense of injustice, but it passed fairly quickly and I haven’t really seen a strong resurgence. Reflecting on why this is so and all I can think is that I accepted the diagnosis fairly early on. However, this is not a wisdom I gained from this particular life drama but from many others that have come before it. It was a lesson that was hard won. The psychological definition of acceptance “is a person’s assent to the reality of a situation, recognising a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest.” I would differentiate acceptance from acquiescence which implies a more passive state or sense of giving up. I’m not talking about throwing in the towel. I’m talking about letting things that you can’t change be what they are. I don’t have all the science to back this up as there is this grey area between psychological theory and clinical studies so forgive my very subjective take on this.

There are studies to show that the opposite of this state of acceptance which I will say completely unscientifically here is the fight or flight response. This evolved as a way to get us to run very quickly away from creatures with sharp, pointy teeth that wanted to eat us. It works really well for short term problems but is not so great in the long run and can lead to heart disease, weight gain, depression etc. A cancer diagnosis can produce this response but it’s not good to hang onto it. Cancer is a long term threat to life so you need a more sustainable coping strategy. Legging it or punching cancer in the face ain’t gonna cut it. On a side note, just for reference, this is why telling someone they can ‘fight’ cancer isn’t the best statement to hear. Being in cortisol-fuelled emergency mode will do more harm than good. Also the whole reason I got cancer is because I can’t ‘fight’ it. My immune system is being very silly and thinks cancer is its mate. Cancer is the ultimate frenemy.

Connected to this is getting a good nights sleep. Not an easy feat I accept. There is evidence to show that people with depression don’t experience vital parts of the sleep cycle and this interferes with their ability to process information from the day’s events and incorporate it into their sense of self. I feel that it’s vital to my mental health that I make cancer part of my identity. I will live with it for the rest of my life, whatever that looks like. The tricky bit is to accept cancer without letting it subsume the whole. Much as the physical manifestation of the disease is attempting an aggressive takeover of my body, it is trying to do the same to my mind. Ignoring it or yelling at it (or random strangers on planes) won’t make it go away. Just as I had to accept my lumpy boob, so do I let cancer become a part of my self. A small, but profound part.