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.

A Normal Day


Today Lilah and I went to the archaeology day at Brighton Museum. A happy photo right? What you might notice though is the bags under Lilah’s eyes. She didn’t sleep until nearly 11pm last night because she wanted me to put her to bed and I was too tired. At her drama club on Thursday they were enacting the Edward Lear poem ‘The Jumblies”. In the poem they set sail in a ship made out a sieve. The teacher asked Lilah what treasured item she wanted to take on this long, imaginary boat journey. She said “Mummy.” She normally replies “chocolate.” And at the event today, I couldn’t go more than two feet from here without a frantic shout. I’d say she’s definitely been feeling some consequences from me suddenly becoming ill. Thankfully, spending the day together seemed to have taken the edge off her sense of loss and fears and she’s sleeping soundly now.

I realise though that I have some disturbed feelings about the last couple of days too. Since Mum and Dad left, Lilah and I have done some of the things we would normally be doing. Going for playdates, meeting friends, doing home ed activities. And it all feels off. Somehow seeing people and doing everyday things makes my illness increasingly abstract yet more concrete at the same time. It’s a strange existence, being one foot in my old life and one foot in the new one. I prefer it when we’re taking action of some kind, even if it’s throwing out old stuff or clearing a work surface of bank statements and junk mail.  Perhaps this state of alert and preparedness is the process of easing myself from one reality to another and I should embrace it. I know that I can’t stay in emergency mode forever as that will do it’s own damage. But I think I need it a little while longer.

Small lumps & big feelings

So I just went to the Park Centre for Breast Care today for the first time since I got the news that I did have breast cancer. The poor innocent building is beginning to fill me with dread and fear. I must get a grip on that because I predict I’ll be spending a lot more time there. I had the biopsy of my lymph glands (under the right armpit) and they also did a biopsy of a very small lump that the MRI detected in my left breast. All numbed up, so at least there was no pain. Although I’m feeling a bit sore now and there’ll be no weightlifting for 2 days. Doh! So I got the news that the original lump is actually 6 cm whereas we previously thought it was 1.7 cm. So, quite some difference and it was a huge shock. But apparently these things can be relative and big boobs may mean big lumps. And as the radiologist made clear, I am “well-endowed” so there’s plenty of room for the surgeons to manoeuvre in. There’s still a good chance to ‘Save The Breast.’ Anyway the next big test result to come is from the biopsies to see if the cancer has spread to the other breast and to the lymph glands. We’ll deal with that when and if it comes. So I’m feeling pretty shaken up and I’m rolling with it. After a few of these bad news days I’ve discovered that I’ll have a day of weepiness and then I’ll accept it and make it part of the new reality.