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.


I was wondering if you would all like to know more about why I ended up in hospital for a couple of days, so today my post is dedicated to ‘neutropenia‘. Not to be confused with 70s classic mods movie, “Quadrophenia“. Although there are some parallels between the super youthful and aggressive ‘neutrophils’ with the mod youth of the past. Both chased around looking for trouble and used chemical substances to enhance their performance. The video above shows the neutrophils at work, ingesting bacteria with glee and abandon. Neutrophils are short-lived (5-7 days) in the body but do make up 40-70% of your white blood cells. They are also the first responders to bacterial infection. When my chemotherapy drugs went in, they killed every cell that was in the process of reproducing. Because these neutrophils are dying and reproducing at such a fast rate, they are one of the first to become collateral damage. But it does take a few days to completely annihilate them. So about 5-10 days after chemo are when my poor neutrophils are at their lowest before they start recovering again. So for those days if I get any nasty germies in my body, I’m fooked. I literally have no defence. The rockers have beaten the crap out of the mods and they’re all out for the count on Brighton Pier.

When my temperature started to rise it could have been because, as decimated as my immune system was, it does still try to mount some kind of resistance to an infection. Also because I was feeling unwell generally, to be on the safe side, they called me into the hospital. Within an hour I was on antibiotics which served to replace my own immune system. When they took my bloods my neutrophils were at 0.1, almost non-existent, making me ‘neutropenic’. This is not unusual though and half of chemo patients will become neutropenic. But as the doctor said, because they can see it happening, they have to take action. It all ended happily when the wee neutrophils came back up to 2.4 the next day. The normal range is 2.5 – 7. The biggest danger though is that I get a small infection and don’t get the antibiotics quickly enough and I go into sepsis and there’s no way to sugar coat this, it could be deadly. Anyway, la la la, that didn’t happen.

To end on a happy note. When they doctors had established I was not about to drop dead from sepsis and I was getting the antibiotics, they just kept me in an extra night to keep an eye. I was so tired that I tried to sleep at 7pm, with an eye mask (they keep the lights on until midnight, just like in jail) and ineffective earplugs. The nurses changed shifts around this time and at the bottom of my bed, thinking I was sleeping, one nurse talked about me to the new one. “They haven’t found any infection and she’s ok. She just needs some tea, love and sympathy.” Not tea and sympathy, because that is actually a little bit glib. But tea, LOVE and sympathy. And he said it in a completely compassionate and caring tone, even though he thought I was asleep and there was no-one to hear. It still brings tears to my eyes. Even though my own self defence force had abandoned me, I felt very strongly that the nurses and doctors were my home guard, shoring me up physically and emotionally.

Today I am feeling a lot stronger and my body is definitely on the mend. I am having a couple of naps a day because I get this heavy, jet-lagged feeling after being conscious for a few hours. My skin is also a bit tender and sore, especially around my eyes and lips. But everything else is improving and I can actually eat fairly normally. So I should be fighting fit by the time the chemo goes in again and we go on this merry-go-round once more. At least this time, we’ll know what to expect.