And now for some exhaustion

I have become one of those individuals who requires the little green man in order to cross the road. I depend on him. I am the woman standing at a set of traffic lights on an empty suburban four way intersection, eyes fixed intensely, focusing on the little red man, waiting for him to stride off in little green man fashion thus making my road crossing decision for me. Then I realise I have never pressed the button; the little red man is permanently stationary. And so I push the button, slump against the traffic light pole for support and wait some more. Should the intersection be uncontrolled a detailed six step plan of attack is required before I can even approach the curb. What is the intersection type? T, ok. Which direction is the initial traffic coming from? From the right, that is normal, good. Can I see past that parked white van? Sigh, those white vans are always too wide, and they always seem to be double parked, and they drive just far too quickly; I wonder what is inside those white vans…… HEY! This is no time for mind deviation. Back to the task at hand young lady. Now, I’ll ask again, can you see past that parked white van? Yes. Good. Is there a chance of any traffic coming from the T? Not really, the road is almost overrun with rolling dust balls. Alright then, look right, is there any traffic? No. Ok, look left, is there any traffic? No. OK, look right again, remember how we went over this at primary school? Little field trips to practice crossing the road? So, look right again, take a step to the curb, off the curb, scanning left and right as you cross, in case you got something wrong. Phew, centre island. Now begin again, only left, right, left this time. Things get a little more complicated, a little more panicked, if there happens to be traffic. Don't worry, I am not driving.

It was not until I was slaughtered by indefatigable exhaustion that I realised quite how many subconscious decisions I make in a day. I have never before been so grateful for little green crossing men. I have never before been emotionally distressed at the lack of little green crossing women. I know I have referred to fatigue in the past. I was wrong. Compared to what I am feeling now I was hyperactive before. I have a permanent prostration slap across my face; a burning red strip running along my cheekbones, ashen rings arching upwards towards my bloodshot eyes. My own little facial scrub fire; the mark of irrepressible tiredness. I went to bed on Saturday night, around nine pm. I did not really rise until six am Monday morning; my rest occasionally interrupted for feeding. It is not only my body but my mind also. I was lying in bed Sunday, distraught, because I could not focus on any books, any articles, any words. It is a dark day when I cannot read. It did not even cross my mind to use this novel invention called TV. I am not sure if you have heard of it. Laying around, trying to find a way to pass the time, and I did not even think of TV. That is how tired my mind is. Presently, I cannot cope with modern day branding, advertising or newspapers. Any changes in font, incorrect or unexpected capitalisations, erratic bolded words, underlined sentences, images and colours thrown in for good measure; my brain freezes then shatters. I cannot read this material. It is like an optical sensory overload, my cerebral lobes cannot convert the data from my eyes into logical thought. If the start of each word is capitalised and there is a picture nearby, my brain will be unable to decide which direction the text runs in. I start to read things downwards, or miss out words, or infer meanings because of the pictures, but the interpretations are distorted; jumbled; incorrect. I finally understand why tabloid newspapers adopt this method of 'reporting'.

I am acutely aware that the ABVD chemotherapy regime is far from the most potent. Granted the doses are more frequent and longer than other regimes, but the side effects have nothing on say a breast cancer regime. Three months ago I started writing of my fatigue. That youthful, inexperienced, past Liv had no idea. And the condition of others will be more severe; that poor cancer patient who has small children, say. How do I describe my current level of enervation if, in two weeks, the level will again plunge? The worst I feel is only a perception, not a reality. The truth is I can always feel much worse. Others are feeling much worse. This sounds rather doom and gloom but it is not really the case. The contrast on how I felt two weeks ago and how I feel now is blatant. I imagine there is a high possibility that my condition could further deteriorate significantly next fortnight. Therefore I should enjoy the now, in case of steeper decline. This is an easier attitude to adopt with the (unlikely) prospect of further chemo. Whatever I am feeling now will not cast a shadow on what is (unlikely) to come. For someone else that unlikely has happened. I know this. I know am lucky. I am not trying to sympathise with myself here, purely document my persisting degradation. 

I believe it will surprise no one to learn that work has beaten me. Three weeks from the finish line and I have pulled up lame. Lamer than a photo slide evening of Uncle Bob’s 1967 holiday to Twizel. A few weeks back, when I first started contemplating returning to sick leave, I was disappointed in myself; stubbornly persisting with work each day. Currently, I am just too tired to care. Here are the facts: Liv, you cannot continue to work. Take a big gulp of your pride, the little you have after that haemorrhoids post, and move on. Plus, we do not want your sexy bald patches causing a distraction in the mixed gender laboratory now do we? It is the mental exhaustion that has sealed my fate. The physical exhaustion I can handle, with a many complaints of course, but mentally if I cannot cross the road without electronic aid, well, I am not fit for work. Plus, in my current emotional state, I will definitely cry if criticised.  

I shall cease my fatigue complaints for now and describe some physical ailments. Yay for you. Ever since my 0.2 neutrophil scare I have been prescribed regular G-CSF injections; five days after each chemo for three concurrent days. I confess that I find the number three arbitrary. Quite often three turns into two. It is difficult when I can feel every bone in my body, even bones I swear are not large enough to contain the marrow required for leucopoiesis, to again inject myself on the third day. I can close my eyes and picture my skull, its osteo outline a map of bone pain. Even my teeth ache, which is either referred pain or imaginary, certainly not scientific. The bones in my ankles, my fingers, my wrist; all are doing their part to keep my immune response intact. My ribs resonate pain like a musical scale; deep persisting aches in the bottom gradually moving with rib to small high pitched stabs at the top.  My spleen is working hard once again. Honestly when all this is over I will nominate my spleen as the union rep for my body. “Look, look, look at what I am doing here! Hey, pay attention! All your blood cells are passing through me regularly. That is only some of what I am doing, thanklessly, and without pay.” I have been doing quite a bit of blood film morphology at work of late, a physically sedentary task so it fits in with my capabilities. Plus I get a little excited over morphology, intermittently distracting my male colleagues. I have found that sometimes I suffer sympathetic spleen pain; in a CLL patient for example. Occasionally my spleen mourns a fellow comrade with a little kick of agony if I chance upon a Howell-Jolly body in a hyposplenic blood picture. I myself display the same oversensitive attributes as my spleen, so I can sympathise, but after seven months of unrelenting reminders I am ready to part with this mighty little organ. Hopefully little organ.

And that is me for now. It hurts to breathe, but I think the sharp pang on inhalation is muscular. Three months of awkwardly sleeping on my PICC line arm has contributed to some wicked muscle changes, and I don’t have the strength for pectoral exercises. Although I ought to find it because I have heard that failing to breathe can be fatal. I have had a gum infection for seven weeks now. It is superficial, so no chance of sepsis, but unmovable and uncomfortable. Tongue ulcers make eating a bit of a drag, my taste buds are erratic and confusing. I am rehashing multi-syllabic words incorrectly; a fine display of my mental capacity. I am well aware that the quality of my writing has languished. Significantly. I am sorry about that. I am over this chemo business.

Happy Birthday to Mike

I am trying something new here, actually a few new things. Today is my husband’s birthday and as a super special treat, I am letting him take me to chemo and will earnestly attempt to keep all stomach contents either soundly in my digestive system or, at the very least, in the toilet bowl. No sinks today. For Mike, it must be the most disappointing birthday of his life. There is nothing I can give to him, say to him or write to him, that aptly expresses my gratitude and indeed reliance on him over the past six months. He has cared for me, tidied for me, tolerated my volatile moods and all I can give to him in return is a card with some excessively scrutinised yet still inarticulate words and this rather public outcry of affection. Happy birthday sweet. I am sorry.

This is my first pre-day-of-chemo post. I already feel nauseous and am disappointed because I know the queasiness is all in my head. There is no biological reason to feel unwell, it is purely anxiety. Which is odd in itself as by now I know the drill. I guess there is a little nervousness as to how my body will respond; it does seem to change with each session. I desperately do not wish a re-enactment of my previous session, however theatrical it may have been. So here I sit, a tap tap tapping away at the keyboard, hoping that my thoughts can successfully be transformed into words. I feel I am letting my little black notebook down; I am typing this out directly (thus it is missing an important editorial stage; forgive me) so my little black notebook misses out on my brain working this particular day.

In previous posts I have proclaimed my physical woes in the hope that I will keep the complaining to a minimum when or if I happen to speak or write to you. This I think, but please correct me if I am wrong, is having a small degree of success. However, that little bastard painter with his black paintbrush and his daubing of thoughts has managed to lodge himself firmly back into my psyche. I may not be complaining about my spleen in public, but not much else I say is very positive. The bitter old man rants spurt from my mouth before I realise what is happening. I have morphed into both Statler and Waldorf; acrimonious, horrible, nearly nasty pensioners in the body of a twenty nine year old woman. Amusing to watch if one is a fly on the wall, but for those actually living amongst these tactless tirades, well it is highly unpleasant. I am finding it highly unpleasant. I catch myself mid-rant thinking “Liv, have you said anything decent all day? You are really pissing me off!” Somebody has created a near exact duplicate of me; it looks like Liv, sounds like Liv, dresses like Liv, but the duplicate is a total asshole. Lines intended as jokes are spat out in spiteful tones, words upon words, ill-thought, if thought at all. An exasperated internal voice is screaming stop, please, just stop talking. But no. No, this duplicate Liv, with her intolerance and her perceived self-righteousness prances around spouting utter bullshit in a horrid splenetic tone. The worst of it is I can see others are, if not listening, at least aware of these stupid words, words that should be meaningless but, unfortunately, are the sort that one never forgets. And it isn’t anger or repulsion that I see in the eyes of my sufferers, it is pity. If I happen to have enough social awareness to direct my gaze in the direction of the particular victim of the moment, I am greeted with large unblinking eyes of the deepest pity. What has become of you, these eyes are asking, how will you recover? Not recover from the cancer, but recover from the bitterness that has lodged itself firmly in my brain, its own little tumour metastasising throughout my body.

So how do I deal with this? Illicit drugs maybe? I can’t exactly write post after post about my petty never-ending frustrations with the human race. I would require, at a bare minimum, a nom de plume if I were to do such a thing. It obviously requires a degree of self-awareness and energy to filter internal thoughts prior to verbalisation, and I am lacking both aspects at present. I need thought dialysis, although I guess that is essentially the role of the media these days. It is, again, with enormous frustration that I admit this rather large fault in my current personality. I don’t like it, I want it to stop. What I am trying to do here, I think, is apologise for my past actions and to let you all know that I am trying to rectify the situation. Hopefully, the outbursts of UKIP like hatred will soon cease, and I may be a moderately tolerable person to be around.  

For now I will use biblical inspiration and, with the strength of a unicorn (Numbers 23:22), prepare myself for the upstairs bus ride with the weekday Brighton eccentrics, in order to endure my next course of cytotoxins. If I am bitter now, imagine what poor Mike will be dealing with nine hours from now.   

A tale that goes nowhere

Mike has requested a prompt follow up to my previous post. He is worried that you will be unjustly concerned for my wellbeing. But I know my readers would prefer an ever popular Shortland Street cliff-hanger rather than a cheesy happily ever after fairy-tale conclusion. A fairy-tale would be a lie anyhow; I am far from a princess and there is yet to be an ending to this story. Do not fear, the Shortland Street theme will be short lived; the last time I caught an episode Dr Ropata was still a regular character, I can’t keep it up for an entire post. So, this entry is to appease my husband, but I need you to know that I have no intention of deceiving you.

I have noticed, with a tinge of remorse, that I have only managed two posts this month. Granted, I still have a day to push the number to a staggering three, but I feel the number two is an accurate portrayal of exactly how I have been feeling, a proportional relationship to my energy levels, although there are only two points of reference so not really statistically significant. But psychologically significant, I can assure you of that. I have been running above my physical capabilities for the last month. My down time is almost exclusively occupied by sleeping, or at least in a horizontal position with a desperate hope of sleep. If I am lucky I can find enough energy to read, but even that pastime has suffered greatly. That makes writing, a hobby that requires a significant amount of my already limited brain capabilities, near impossible. It takes a week to write a post and a week to tidy it up, thus explaining the meagre two I have managed this month. I find this utterly frustrating. It is not as though I am incapacitated, I am walking and talking and breathing, yet internally I am aware that every tiny little task I undertake is requiring more and more conscious effort. It is as if I have lost or am in the process of losing all innate thought processes; I need to actually remind myself to lift my feet when walking up steps, elsewise I run the risk of ending up the next stairs fail YouTube sensation.

The compounding fatigue is also making work difficult. No longer am I able to lighten the day of my workmates with my charming anecdotes and whimsical smile. The task at hand is all I can concentrate on. There are no explosive starts to address urgent results, blaring telephones or bleeping analysers. Well actually I am still attempting these spurts of anaerobic BMS-ing (the most active laboratory based career I can assure you) but I cannot sustain the energy levels. The fatigue comes on too quickly. It has already risen, cast its blackened clouds around my brain – lightning, thunder, hail, clearing fog - before I am aware of what is going on. I am the three year old child, inconsolable, merely because her elder sister is standing too close to her, frustrated because she is not entirely sure what is going on in her brain, and cannot appropriately communicate that all she really requires is a nap and quite possibly some chocolate.

My thoughts end up entirely engrossed with my health and my work. Don’t worry, the irony is not lost on me. I am well aware that these preoccupations are going to negatively impact performance in both areas. But I cannot seem to break the feedback cycles. One upregulates the other, which in turn enhances the primary initiator. If only we were talking about diuretics, aquaporins and renal water absorption, then I might actually be able to contribute some knowledge on the matter. But no. I am scrambling in the darkness of a long foreign corridor, socks slipping on the polished linoleum, desperate, in search of a light switch that may offer me the correct path forward. I guess the obvious solution is the cessation of my employment. It is more than stubbornness and pride that is preventing this outcome; I do need human interaction to stay sane and, in a startlingly humble admission, work is where the majority of this interaction happens. I like my colleagues, I look forward to seeing them each day, but it is possibly the wrong reason for dragging my ass an hour each way across Sussex four days a week.  We don’t want another ‘hide under the bench’ episode now do we?

That was all a bit wanky wasn’t it? I may have pushed it a bit far with the corridor analogy. I was hoping for a Mansfield flare. Shoot for the moon, if you miss you'll land among the stars. What a ridiculous proverb. The moon is closer than the stars. If you shoot for the moon and miss, which you will because of, you know, gravity, you’re only going to end up with a face plant on the surface of Earth. This is exactly what happened with that Mansfield attempt. I am all for metaphors, but the overuse of phrases a six year old's rationale could destroy really grinds my gears. I believe it may be a Wilde quip as well, although probably a rework of an older proverb. Way back from when astronomy wasn't really practised. 

Don’t worry, I have just taken a little break to read a few of excerpts from the Australian version of Card’s Against Humanity. It will be crass from here forth. Political crass, but crass none the less. All it requires is a little perspective to make me cease my moaning. By reading those cards I was reminded of the suffering the poor Australian citizens have gone through. I had almost forgotten that Russell Crowe’s band had actually been a thing. Anybody who has seen Les Miserables will indeed sympathise. It was a tragic period in history. I could have gone anywhere with that tangent, be grateful it was as clean as it was. It is a little early in my life as a blogger to start inciting internet outrage.

I had intended to burden you with my thoughts and feelings on blood transfusions, but I shall postpone that for another day. I know, I can hear the cries of disappointment echoing around the globe. You’ll just have to wait. I have rambled on in mild self-loathing and moderate self-pity for long enough, I believe. I realise that this decision has made the post rather short, but hopefully it will make Michael happy and let you all know that I am still alive. I do feel much better after writing this, although it has taken the entire day. And I suspect the sneaky glass of Alsace Riesling may have also added sufficient lift to my mood.