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.

My final ABVD complaints. Hopefully.

I apologise for any grammatical or spelling errors in this post. It became a 'now' post halfway through, and as you will see, my editorial skills have been somewhat hampered this evening. I wish to give you advance warning of this. Feel free to comment on any obvious mistakes, I will endeavour to update them. I would say 'enjoy the entry', but I fear that you will not.

As my diagnosis currently stands yesterday was my second to last chemo day. Occasionally, the excitement of this overwhelms me, images of a late September swim in the charmingly blue seas of Mediterranean or the Adriatic, or both, swell up inside me. A rare and jilted smile appears, showing my chlorhexidine yellowed teeth. Today, however, I am not going to give in to that excitement. I will leave it for another day, another post. Although I am not in an overly moaning mood, Dante is trapped in a wall of ice, I feel there are issues I need to address. I often find myself consulting Dr Google with side effects; new biological developments are still occurring although I am six months into my fortnightly treatment. Often Dr Google refers me to other’s blogs, where fellow patients have addressed my concerns.  I feel this post ought to achieve a similar goal, even if only one person benefits from it. This will delve into the depths of personal discomfort that in normal social situations simply should not be referred to, and I must admit that I will not reveal all. I do have an ounce of social awareness in this head of mine. Do not fear, I will warn you before things become biologically personal, allow you to skip certain paragraphs should you choose.

I must confess, I am resisting the urge to launch into various top ten lists; ‘Top ten things Liv is looking forward to post cancer’ ‘Top ten tips for Hodgkin’s Disease patients.’ I mean, I whored myself out to the internet when I posted a picture of a cat on my blog, why not continue this prostitution with a variety of top five or top ten lists? Watch this space.  Another temptation I am resisting is to cry out, loudly, from my balcony to the fresh blue sky ‘My tummy hurts!’ This urge is harder to suppress. Instead, I screw up my face, lifting my top lip to the base of my red nose in an entirely unattractive expression of pain, much like Sloth fit only for the basement not the balcony, and wait for these stomach pangs to subside. Not an overly productive approach, I will give you that, but it seems the only bearable one. I am not really in a self-pitying mood, more an oversensitive Paul Morel mood, so it shall be interesting to see how these previously undocumented physical qualms manifest themselves in words. I would more gladly be addressing the doom and gloom that is the state of modern politics, the varying possibilities of my future, and how to solve world hunger. These topics, at least, would leave me with a sense of middleclass white girl angst and sufficient inspiration to write something coherent. But then I run the risk of getting all Steppenwolf again. And I have no answers to these unrhetorical, somewhat pressing questions. My brain turns into the sort of Spirograph I produced as a child; my limited artistic abilities forming indefinite shaky lines, a clash of colours and scribbles with no discernible beginning or end. My lack of patience may also contribute to this mess, both then and now. Oh but I am sure you do not wish hear about that. It is physical issues I have promised, not psychological ones.

For any reading this who are yet to begin chemotherapy, you may be feeling frustrated at the lack of mental preparation the experts are offering you. This was certainly something I felt. I cannot recall how often I was told ‘Every patient has different experiences’ or ‘Everyone tolerates [tolerate would not be my word selection] chemotherapy differently.’ Even down to hair loss, each individual experiences different effects. They cannot promise you anything, so are reluctant to do so. I understand this now, but at the time, when I was facing a world of unknowns, my life plan becoming a six month plan, not even six months, just each fortnight one at a time, well it is difficult to be told ‘we cannot prepare you for what is to come’. 

For example dacarbazine, that wicked drug, it hurts. It does not hurt for everyone, but for me the pain was excruciating. You all know this, you have tolerated [a more apt use of the word] my previous complaints about dacarbazine, over and over again. Now I look back on the arm pain, which barely exists since the insertion of my PICC line, and think that it was the only consistency in my treatment symptoms. It is not only the professionals who cannot predict what you may experience, but you cannot either. There is intra-patient variation as well as inter-patient. Personally, the only regular occurrence in my treatment regime are the emotional tears produced an hour or so before we are due to leave the house, and my bus ride solemnity. Any Brighton and Hove bus driver who happens upon the number one route every second Tuesday will probably assume I have the moodiness of a fourteen year old girl. Maybe they are correct. I was aghast yesterday when the CNS effects of the vinblastine re-established themselves; that awkward squidging in my oversized brown chemo char, the facial tingling; I haven’t felt that for a while. So why now? It makes little sense. I do not care for this unpredictability.

I am procrastinating. Even I, with my crass mind and illogical sense of humour, cannot bring myself to delve into what I promised earlier. This may be the paragraph that finally snaps that thin thread of dignity I have been clinging to. This may also be one that some may choose to skip. Assuming any readers are remaining. I have alluded to (piff alluded, I believe I flat out announced) the culmination of various medications, cytotoxins and destruction of mucosae resulted in the bowel movements of a newly breastfeeding woman; well try six months of that situation. Despite using the prescribed laxative juice sachets, startling imagery perhaps, but Laxido is not really that bad. The constipation could be deemed another secure, regular symptom, as could the haemorrhoids that eventuate from that sad state of affairs. I finally understand why one is told not to sit on hard solid surfaces. No one should ever need to reach for an impromptu gag before attending the bathroom. A rather awkward situation when your in-laws are in the adjoining room, I can assure you. Or, should you happen to be at work with no impromptu gag, just the corner of your salmon cardigan. April, with a lingering UTI, I was near to developing a form of toilet phobia; more from fear of pain, noise and the eternity each movement took, rather than genuine parcopresis or pauresis. Enough already! Please be assured, that paragraph was as difficult to write as I perceive it will be to read. 

Shall I move on? To what? Upper digestive complaints? The nervousness to which I consume each meal, unsure if it will stay down or send me hurtling towards the nearest drain opening? Follicular irritation; everywhere. Not lymph node follicular, although with a little research I could probably drum up something there also, but ingrown hairs, on my scalp to anatomically name one victim, my hampered immune response unable to deal with these annoyances appropriately, and so all that remain are unattractive, concerning, painful little bumps. In a cruel twist of fate should I need to shave my head, my baldness will reveal these eyesores for the world to ogle. Ah. I can answer my pressing last meal question for you, nausea currently rising inside me, the background splenic pain intensifying, much like the quickening of a heart rate. Excuse me for a moment……

Sad face. An expected yet unexpected outcome; it never fails to shock me. Not the childhood shock you get when you realise Kermit is not actually playing the banjo in Rainbow Connection. Another Monkees scandal brewing; Kermit did the past not teach you anything? Ok, I confess, Kermit’s faux banjo skills have only recently become apparent to me. I have used childhood to describe a state of mind. Anyway, that is not the shock I speak of.  Maybe more like the shock of listening to ‘Playground in my Mind’ as an adult. Given the recent developments of 1970s pop stars that particular song takes on far differing connotations. Not that I am implying anything!!! Massive disclaimer here. It was more the shock I was trying to allude to, and an attempt at a joke. Let the internet outrage flow. The shock I am struggling to describe goes something like this: collapsing on the cold bathroom floor tiles, surrounded by my fallen hair strands, tears streaming down my cheeks, unable to collect in my eyelashes as I barely have any, my oesophageal epithelial cells indignantly offering their protestations using the art of burning pain, I myself crying in a self-pitying and therefore repulsive tone ‘why, oh why’ along with further blasphemous oaths, wondering if the reverberating sound of my greenstone pendent knocking against the toilet bowl with each heaving effort is a mocking applause or an ironic background drumroll. Argh, the nausea has not really subsided despite my physical efforts to remove it.

No amount of toothpaste can remove the lingering stale metallic taste that taints my mouth the four or five days after my chemo sessions. The chlorhexidine mouthwash does help this; although the mint flavour resembles rainwater pooled in an outside ashtray of a menthol cigarette smoker, there is at least a taste other than the one that I now correlate with nausea. Does nausea genuinely have a taste? This stale metallic one always accompanies the nausea, so, much like my aversion to chamomile after adolescent chicken pox, an irrational relationship is formed. Fortunately, my everyday diet does not include metal. I am trying to type through this current nauseous preoccupation; I confess I am struggling to do so. I do not really wish to conclude now, on this bitter note, I have more I wish to say, content other than piles, ingrown hairs and vomiting. If I finish now what shall I do for the remainder of the evening? Sit around and feel sorry for myself? Things are not really that bad, they have been worse, far worse, they are merely uncomfortable and distracting, much like my piles.

I am starting to visually resemble a cancer patient. This is ironic. I am nearly a recovering cancer patient. A couple of chemo sessions back, I left the hospital wearing a black woolly hat, to protect me from the May wind and the post-chemo coldness I have been experiencing of late. We got to the bus and I asked for two single tickets, a double take from the driver, he waves us through, ticketless. Shit. I am one of those. The phlebotomist has started calling me ‘dear’. That may have something to do with my spontaneous uncontrollable hand tremors. My naturally thick, abundant, fluffy blonde hair has fared remarkably well throughout this six month onslaught, however the bald patches are starting to show. Comments from onlookers have changed. Initially “Your hair looks great”, correct, I should have chopped it off years ago; then “You can barely notice the thinning”, well I can, as can our shower drain; now “Oh, ah, your hair is doing really well”, it is ok I am contemplating shaving it off. It is kind of a reverse mullet at present. Long on the top and short/bald at the back. A full-head comb over if you will, each remaining stubborn strand doing its part to maintain my vanity.

OK, I have gone over that past paragraph and the overall bitterness still remains. Comedy is turning awkward, nervous glances to the person beside you, a slight grimace, can I laugh at this or not? I want you to laugh, but I fear it is not as comical as I intended. Which means I do indeed need to resign for the night. I am unsure if this post counts as a ‘live blog’, although it was written in real-time (ridiculous) and published promptly, there were not the real-time modern media updates 1612: ‘Liv has rushed to the bathroom, hand covering her mouth’; it was more like a sick new reality T.V. show, intended only for your imagination. Do not get any ideas.