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.     

Chemo kicks my ass...... again.

Oh for retribution! All it took was a mildly (I’m flattering myself) conceited blog post for the powers that be in chemo land, who seem to take great offence in such matters, to send me a dose that knocked me to my knees. I am far from my best as I write this now. These words are effectively my brain splattered on a page, but my brain is mushy and seems to be lacking in all filtering capabilities today. I apologise if what follows amounts to utter gibberish. Given my recent reading material, I also run the risk of breaking into verse. Again, I apologise if this so happens to be the case. A poet I am not. The musically inclined among you may wish to put a little tune behind it. Chemo-brain Liv; the next Tommy Ill. World famous in Wellington.

I will write, right here, a particular thought that went through my mind, this time two days ago. That thought was “Holy Monkey Jesus, what the hell is happening?!” Quite a blasphemous thought, I know, but I am sure any devouts out there will forgive. That is what Jesus would do.

Have the NHS banned selfie sticks in yet? 

The lead up to the chemo session was far from ideal; disturbed slumber a night or two or three prior, and a spontaneous decision to walk to the hospital in the midday Brighton sun. A spontaneous walk that left me embarrassingly breathless. I slumped into my oversized pink chemo chair exhausted. The session itself was uneventful. I didn’t want to be there, but then I never do. An obligatory chunder halfway through made me feel right at ease. I always want to get home as quickly as possible, this time that desire was super enhanced. But the session took four hours, for no reason I can really put my finger on. At some point during the chemo, I started feeling cold. This does tend to happen; the chemo is kept at room temperature, 10°C or so cooler than my body, so my chemo arm gets a little cold and a little puffy. But this, this was entire body goosebumps cold. As we left the day unit, the gentle breeze channeling between the nine storey hospital buildings propelled me into uncontrollable shivering with intermittent bouts of yawning. Halfway through our upstairs bus journey home, the chattering tremors were nearing convulsions. Mike wrapped a scarf around me. I caught a glimpse of my reflection as the bus passed a black building. My lips chapped and white; my face a bizarre mix - tanned yet grey; my hair dishevelled, the result of my constant urge to run my hands through it and watch the thick strands float to the floor. Our stop arrived and I shakily made my way off the bus, tripping over a ruck sack somebody had generously positioned at the bottom of the stairs. I may have tripped even if I’d had my regular Oscar Wilde wit about me. This particular Tuesday I had no chance of maintaining my balance.

Once home I was under the covers, woollen hat, dressing gown, blanket, two pairs of socks and a wheat bag all in tow. I still couldn’t feel my fingers; should I try some gloves too? My teeth were a chat, chat, chattering, occasionally interrupted by giant animal yawns. A bath! A bath will warm me up. My PICC line cannot be submerged but the rest of my body can, so I lie with my arm in the air like a faulty periscope and my face peering out through the bubbles. I am a new type of camouflaged bubble submarine, although not a very good one as I am still shivering and chattering like an addict in withdrawals. Eventually I decide the bubble bath will also be a failure. I emerge, trembling, with an urgent desire vomit. Is anywhere in reach? The sink! The sink will do, Mike rushes in; “The toilet you fool!” Too late, the sink is in use, when I catch a break I’ll turn to the loo. And when I turn I expel my guts in a way I haven’t for a while, some may say Dundas Street keg party style.

Finally the vomiting ceases. I crawl back into bed, still shivering and wearing only a towel. Totally attractive. I clamber into some pyjamas; they could be on inside out and backwards for all I am aware, and to be honest I really don’t care. Back under the duvet I dive. Paracetamol and anti-nauseas are greedily consumed. Better late than never. Toes are tingling to my knees; my fingers decide to join the fun, then my lips, then my tongue. The dacarbazine pain is back again, although not as severe, it is still discomforting. I lay on my side, emitting moans and the occasional blasphemous oath, much like the one I have already mentioned.

And then things get dark. This image of a pathetic ball of self-pity I am trying to conjure up for you, it was just a phase, but at the time it was difficult to believe such a statement. Since my diagnosis my dreams, or more my nightmares, have changed substantially in content. Maybe I should write a letter to the broadcasters in this head of mine to complain. No longer do my scary dreams entail chasing and killing and international crazy men of mystery, no, my nightmares, or nightmare to be accurate, are (is?) almost exclusively about me losing my wedding rings. I wake regularly to check they are still on my ring finger. Some nights I tape them up so they cannot move, which is poor exposure therapy I know. I wonder if death no longer scares me as much as it used to, and if maybe my biggest fear is losing or breaking the relationships with those near to me. Especially with Mike, who is my everything. Maybe I, as always, am reading far too much into it all. Anyway, this is a bit of a preamble into what I was thinking as I was laying under the covers with my wheat bag, moaning and cursing. I then understood why people die. Not like they choose to die so to speak, but maybe why they surrender to their body. That particular point in time was the worst I had physically felt in my entire life, and the thought that this feeling could be more than short lived did make me wish for death then and there, yet I was always safe in the knowledge that the feeling would pass, and I would feel better at morning’s break, but at the time morning seemed like a distant unfocused spot on the horizon. The sun hadn't even set yet.

Eventually the paracetamol kicked in and the shivers ceased. My temperature crept higher and higher until I finally resigned myself to the knowledge that moving was necessary and, using my less than precise thermometer, measured my temperature at a warmish 39.2°C. Out from the covers I slide, now in an attempt to cool off. Antihistamine is consumed to address the tingles and hopefully induce some sleep. Sleep did eventually prevail. Mike is also feeling a little under the weather; the bedroom in the morning was literally hot and sweaty, but not in a Lady Chatterley way. And when morning did come, the feeling of doom had passed, and it was merely fatigue, a little pain and a splash of nausea that remained.

So today. Thursday. I had, collectively, about two hours sleep last night. There were restless legs, festering rage, overwhelming tears, but very little sleep. The coffee I poured from the percolator this morning ran clear, apparently putting coffee grounds into the percolator is a useful thing to do. Solid evidence for my desperate need of caffeine. I did make it to work, shrouded in fatigue and negativity, and thank the colleagues who both tolerated my crankiness and lifted me out of my hole. My next posts and sessions, I have now learnt, I shan’t be taken so arrogantly.

Back to work

Yesterday I finished The Tin Drum. I sat on our balcony in the sun, the UV rays adding nicely to my antipodean hue, and sipped at a small glass of Marlborough Sauvignon Blanc. Things do not get much closer to bliss.  Today I wore a white shirt, emphasising my colouring achievement to my British colleagues.  

Yesterday I finished The Tin Drum. The ending was a little eerie. With no wish to include spoilers for any would be readers, it involves a pivotal moment in Oskar’s life and his thirtieth birthday, although aside from Oskar’s narcissism, that is where our similarities cease. At the end of the book. Shall I start gathering disciples?

Yesterday I finished The Tin Drum. Today Gunter Grass, the author, died. As you are probably well aware I have no belief in fate, omens, religion or the like. Events transpire in life, you learn from them, you move on. Or sometimes you don’t. I have no qualms with individuals who do believe, I am just not one of them. With that aside, it is a bloody freaky coincidence. The aforementioned narcissist tendencies I unfortunately possess do make me wonder if Grass, who of course was an avid follower of my blog, was aware of my current reading selection, and was waiting for me, Liv not Oskar, to complete it so he could pass away peacefully. On all fronts this is a highly unlikely scenario. And I very much doubt that I would have liked Grass had I met him. But then again, I doubt I would have liked Hemingway either or, and I can’t believe I am going to admit this, Orwell.

Why are you writing this?! I hear you ask, please just tell us more about your spleen. Well alas dear readers, the spleen only causes minor discomfort now and then, as does the arm, so in order to keep the hits from Russian bot websites coming, I am going to have to post something a little different. Grass’ untimely death has been bothering me a little, and I suspect both Grass and Oskar will impact on my life in the years to come, so I have included my thoughts here.

Initially I started writing as I found it therapeutic. After my first chemotherapy session I felt I needed to get all my thoughts out; the experience was quite shocking, I needed to vent. During the first half of my treatment, when I was feeling piteously sorry for myself, the blog was a good outlet. Here friends, it said, here is my long, long list of complaints. Read them if you wish, and when I see you I shall attempt to keep the moaning to a minimum. I like this approach. I give you the option and yet I still have an outlet. I confess I probably wouldn’t read my own blog. I am a terrible person.

I have now passed the halfway mark in my treatment regime. While I can no longer sit through a chemotherapy session without regurgitating my stomach contents, my recovery afterwards is improving, and thus too my state of mind. I believe the PICC line deserves the majority of the credit here. An inappropriate desire to show the tubing to everyone I meet is an indication of how attached I am becoming to my appendage. My inability to learn that this is socially unacceptable behaviour may well place me mildly on the spectrum. If the spectrum does indeed exist. The sudden emergence of the sun from a typically dull grey British winter means my protective shooter’s sleeve is now publicly on display for all the prepubescent twelve year old basketball boys to admire. Man I am cool with the kids.

This is a long winded way of saying I feel much better, the sun is shining, the days are getting longer, and I am grateful that I live on the South Coast. Because I was feeling like sunshine, rainbows and lollipops, I decided to attempt getting back to work. I would like to have it on record that my fellow colleagues are totally super awesome, they are amazing, they have been far more supportive than I could ever have imagined, I thank them endlessly. My manager, also, has been thoroughly supportive throughout what has been an entirely frustrating process. Please remember this outburst of affection, as I launch into a rant befitting a Mississippi preacher.

In order to resume my role as, what some believe, a contributing member of society, I required a medical certificate ensuring my workplace I was fit for work. I am not, of course, fit for full time employment, but can manage reduced hours. In fact I need these reduced hours in order to maintain the slight shred of sanity that remains in this mind of mine. The medical certificate could not come from my haematology consultant, oh no, it must come from my GP surgery. I have not seen anyone at my GP surgery aside from the phlebotomist, since December. A quick phone interview with a gentle doctor produced the desired certificate; he asked what I needed and wrote exactly as I dictated.  A copy of this precious document was then sent, hard copy form not digital, to my manager. Subsequently, an occupational health appointment was scheduled, to assess my needs and sign me off as fit to work.

I really cannot be bothered writing a play by play about this long bureaucratic process. I get all tense just recalling it. With impending doom aside, I can now somewhat relate to Josef K. The situation consumed me. I will attempt to paraphrase the predicament here. I have a full time contract, I cannot work full time until my treatment is finished. My brain turns to mush after about five hours of mental activity. I can barely write my name, and my name is only three letters long. I keep adding an ‘e’ on the end. Perhaps a Freudian slip? So I need part time hours. I had assumed that I would be paid for the hours I worked. I assumed incorrectly. Something to do with an ass, you and me. Because my treatment is ongoing I am not classified as part of the ‘phased return to work scheme’. If the phase started now it would take four months to complete. Policy says may only take four weeks. Therefore I am deemed to be fully returning to work. Which I am not. Had they merely paid me for the hours I worked, then the hours I was absent from work would be deemed as sick leave. I think we all agree this is a correct designation, however, each morning I am absent from work would be seen as a new ‘sickness absence period’, therefore my ‘Bradford Score’ would rapidly rise and I would be deemed a problematic illness employee. Formal proceedings would be initiated. Why? Because policy says so. The very policy put in place to prevent people gaming the system was preventing me from going back to work. And the solution? Every hour I am away from work is to be classed as annual leave. No vacation for Liv this year.

My manager and HR are not to blame for this convoluted process. They are merely part of the system, and have put a lot of time and effort in an attempt to bypass it. Anonymous, faceless individuals create these sorts of policies, send bland auditors out to ensure middle management adhere to the guidelines, and congratulate themselves on a job well done. There is to be no deviation from protocol, no unique situation; all employees are a necessary evil and should be treated as such. It was mentioned that I would already be frequenting Job Centre had I worked at our sister site. And the really frustrating part? Three employees have left since my diagnosis, with a fourth currently fulfilling their resignation period. No replacements have yet been hired. Our department is skeletal. My manager was exceptionally keen to get me back, even part time. Yet policy dictates…..

I am back at work now. I am using my annual leave. It is worth it. Although a decrease in available spare time has resulted in a substantial reduction in my writing output, the brain activity and social interaction with my colleagues has made the process worthwhile. And it has allowed me to use a Kafka reference, so now I truly belong in the blogging world.