Red, hot, and sweaty

I had initially started this post from a hospital bed. Some fairly illegible scribbles were made to the terrible tunes pumping from my first roommate’s radio. Honestly, she turned the radio on at 7am, the volume slowly increasing as the day progressed. At one point I was scribbling to ‘A Whole New World’, which I at least found comical, but otherwise the station played just far too much Whitney. The following day I was treated to Mike Hosking first thing in the morning. Torture, I tell you, torture! Rather than biting my already raw tongue I opted for earplugs, which raised eyebrows and questions from passing nurses. Apparently I was the odd one.

    

There has been substantial action since we last conversed, however, I shall tell you from the outset that I am still awaiting lymphoma confirmation. It is difficult to know how to write this post. Flicking through my inpatient scribbles, the legible ones that is, I am struck down by boredom. An essay on all that I have done this September is not at all interesting and so I think I will begin with the most recent experience with hope that any gaps will be filled in as they rise. Let us see how that goes.

Ah, I am already going to digress! The plan did not go well at all. Time for a new plan. As I have mentioned, I have been feeling rather poorly since mid-August. Mainly rigors, fevers and sweats, although there was a period of nausea as well. The tendency is for these symptoms to persist a few days until I confess them to the haem team and am placed on antibiotics through the haem day unit. Initially it was Augmentin for the gum infection. At the next sweaty presentation they opted for regular blood cultures but held off on the antibiotics. That was until a set grew Micrococcus luteus from both lumens of my PICC line. We know it was Micrococcus luteus now, but it takes a while to determine the species of these little beasts and thus I needed a course of vancomycin. Here are a few fun facts about vancomycin: it has poor oral uptake and therefore is given intravenously, it has a higher toxicity than other antibiotics I have taken and therefore is administrated over a two hour period, and it has a short half-life so doses are required every twelve hours. I was obliged to report to the hospital twice a day for two hour infusions, and of course no infusion ever took less than three hours. This routine continued for ten days and although the haem team were fairly certain the growth was merely a skin contaminant, my bloody symptoms subsided (for a mere four days) therefore they had to proceed as if I had line sepsis. I subsequently lost my PICC line and am requiring cannulae and needles again.

Yup, all that is still boring. I think it is in part an attempt to justify my radio silence. Over the past fortnight, possibly longer, I have spent a minimum eight hours a day in Wellington hospital and I am not even working there. Last Thursday (maybe, time frames are becoming a little fuzzy), on top of the vancomycin, I had another surgical biopsy. The surgeons opted for the right axillary nodes (under my right arm) as they had shown themselves as ‘hot’ on my NZ PET scan. I cannot even remember when the PET scan was. I remember that I was pretty unwell for it and they let me lay my arms at my sides throughout, which I appreciated. I think I fell asleep during it. Anyway, the scan is still showing hot nodes and gave the surgeons further options for excision, including the right axillary. My response to the general anaesthetic during this last surgery was far from admirable. I stated my pain level as four out of ten to the recovery nurse, then began physically squirming, perspiring and potentially groaning. “It is not really a four is it Olivia?” “er um no” cue further opiates. The old lady opposite had undergone cranial surgery yet was displaying few pain symptoms. My attempt at staunchness was a pathetic failure. Do not fear, it does get worse. The surgeons decided to keep me overnight and thus I was introduced to my nurse, a girl a few years my junior who had attended the same schools as I from primary (possibly even kindergarten) to high school; one of those individuals you have known your entire life yet you do not actually know in the slightest. She may have gained a little insight into my psyche as I hurled up bile, shivered uncontrollably, and then proceeded to flash the entire ward due to a sexy hospital gown malfunction. No, the general anaesthetic was not as fun the second time around.

At this point I had had another four day ‘rigor free’ period. I had a brief shiver attempt at the haem day ward the day following my surgery, a shiver that resulted in the loss of my PICC line. The remaining three days of vancomycin was delivered via a cannula, as was an impromptu blood transfusion (not phenotyped, by the way, but I guess this is less of an issue now). As it turns out vancomycin is a pesky drug that likes to irritate veins. Presently I cannot straighten my right arm, and although it is not at dacarbazine level, my arm is bloody sore.

Sorry, I was discussing rigors. Friday, I had a minor chill, Saturday a decent rigor, fever, sweat combo, and by Saturday night I was back to a six hour rigor routine. I had feverish dreams where I attempted to get to A&E but for various reasons could never arrive there. Sunday I did not rigor but I did feel warm all day and when I finally conceded to a temperature check Sunday evening, the thermometer revealed it was in fact 40°C. And so we packed an overnight bag and walked across the carpark to the emergency department. I always feel incredibly nervous when attending A&E. I feel as though I am never sick enough to warrant a visit. A component of my feverish A&E dreams was a fine from the ambulance drivers because I did not actually need to attend A&E and therefore I was responsible for the car crash that had occurred (in an underground car park; it made perfect sense at the time, don't question my dream logic). I had been in a daze for most of the day, I definitely felt unwell, but it turns out along with my 40°C fever I had a heart rate of 170. The A&E screening nurse tested the heart rate monitor on himself as he thought it was broken. Although standing was extremely difficult and concentrating on my personal details was nigh impossible, I did not feel as though my heart was beating quite that fast. I was placed in the acute unit in A&E, which may have been overkill. On the floor there were squares indicating the places each clinician should be standing, I guess for extreme emergency cases. In the room beside mine, which was separated by a curtain and a three quarter wall, The Wiggles played loudly on repeat to pacify an ill youngster. I must say that Hot Potato did little to ease my heart rate.

This little episode of mine lead to my admission. IV fluids and antibiotics were administered using a brand spanking new cannula in my left arm, my right being bloody painful and all. The Scottish nurse got the cannula in on her first attempt. I thanked her profusely for her efforts. During my stay I displayed my rigor, fever, sweat combo for all the clinicians to see. I began sleeping, or at least laying, on a towel at night. A red rash had developed on my right forearm. Gradually it spread and now I have the fortune of rocking a full body rash, which is oh-so-attractive and does not at all scare the general public. It turns out I have a drug allergy, but good luck trying to figure which drug it is; any that I have had in the past four weeks is the answer. I guess we’ll find out the next time the culprit is administered, in the meantime I will continue to itch and scratch until it subsides. 

Eventually they released me from the ward and from my second roommate - a roommate that did not require a radio to be utterly annoying. I am thinking how to best briefly summarise her irksome qualities. They certainly cannot go unmentioned, so here goes: shrill unrelenting voice (my earplugs did little to block her pitch), lengthy explanations, exasperated doctors, physically waking me at seven in the morning and a new found love for her religion. This is only a small selection of her many endearing attributes. Therefore, when I was offered the opportunity to return to the cancer accommodation I responded with a vigour that may have been mistaken for good health. It would not have ended well if I was to endure another night with my new friend. As was noted on my discharge summary this little episode, and those prior, are most likely due to my underlying yet unconfirmed disease.

I am aware that this entry has gone on for a while now, and possibly there are few that remain reading, but there is one final aspect to my latest inpatient installment that I feel compelled to comment on. I must confess that I am always surprised when clinicians are polite to me as a patient because my employment encounters had left me with a rather different, some may say less favourable, view. I like all the haem registrars that have treated me, both in Wellington and Brighton. Fortunately I have never worked at either hospital. My career (career being a loose term) is starting to cross over quite seriously with my treatment. Firstly, I am having a few issues surrendering my blood to unknowns in the lab. In the UK the majority of my monitoring bloods were tested in the laboratory I worked in. Even in the Brighton lab I had contacts. Now they are tested in a lab where I know no one, nor their procedures. Perhaps these are control issues that ought to be addressed in a forum that is not so public; but then that is no fun. 

Before my last blood transfusion I sent the first unit of blood back as it was not irradiated. My first day on the ward, it took the doctors seven attempts to get a vein that offered any blood. The vein happened to be in the same arm as my IV fluids and thus the sample was diluted. The lab rang the ward in a panic (I am using dramatic licence here) with a surprise low Hb of 62. I told the nurse “No, it isn’t that low. The sample was diluted and the lab should really have picked up on that”. Liv was grumpy at the prospect of more needles and therefore was disappointed in the lab for failing to detect the diluted sample. She had been testing their ability, a competency assessment if you will. Three more needle attempts later and we had a decent vein with good blood flow, enough to fill a FBC, two coags (overkill right?), a group and save and a chem sample. But alas! The label from the FBC happened to stick to the label of another tube and therefore was deemed unlabelled. I had been pricked ten times already and was facing further needles. The registrar was devastated and, perhaps, the lab rat received the brunt of her frustration. All I know is that she actively conveyed to them how difficult I was to bleed. I suggested that the lab use the spare coag sample to obtain the Hb, which was the only result they actually needed. It is a simple calculation, merely multiply the value by 10/9 and you will have a fairly accurate figure. Fairly accurate was all that was required, merely a confirmation that my Hb was above 80. 

I nearly volunteered wandering up to the lab and doing it myself, hospital gown and all. The indignant scientist refused my citrate suggestion and even went to the effort of taking my doctor’s registration number, presumably to lay a complaint. In the end the repeat sample had to come from my foot. At this point even I was angry at the lab. I wonder which was the worse outcome, an off the record haemoglobin, or cellulitis of the foot due to an infected puncture wound? I think sometimes we scientists may take our job a bit too seriously. I imagine a few wry smiles have appeared on the lips of former colleagues at my last statement. “I hate catchy choruses and I’m hypocrite; hungry, hungry hypocrite” I hmmm, tunelessly.                            

What the hell is going on?

Oh, dear body! Why would you engage in grey lipped teeth chattering whilst in an extremely public place? Do you despise me that much? I am aware that the environment in which we currently sit, together, could be deemed overheated, so why the hypothermic shivering? The lady exiting the bathroom did shoot me a rather peculiar look but thankfully did not comment on such ridiculous behaviour.

I am afraid I have little to update you on. Last week the surgical team successfully removed a lymph node from my neck, the same node that was biopsied in December. I feel a little sorry for the node; it provided me with my initial diagnosis and is rewarded with excision. Now it is doomed to spend the remainder of its days in a specimen pottle on a laboratory bench. Some may argue that the node will be immortalised given the inevitable formaldehyde fixation but for me, the node is gone forever. I never even learned his name. Sob, sniff, sniff. Although I have described remorse at the loss of this particular node, remorse does not actually convey how I feel. I am glad the surgeons chose my neck. The only other option was a full on abdominal laparotomy; days in hospital, weeks of recovery, and a rather high chance of some major blood loss. So I was relieved when, after some gentle manipulation from both Mike and me, neck surgery was chosen.

As a child, and some may argue as an adult, I was moderately clumsy. However, despite my greatest efforts, I never required surgery. Sure a few superficial stitches here and there, the occasional scar or two, but nothing a local anaesthetic couldn’t handle. This biopsy was full on surgery; fasting, felt tip markings on my neck, oxygen mask, general anaesthetic, slight room spinning, oh these drugs are quite fun, “keep your eyes open for as long as possible”, as long as possible being about ten seconds, unconsciousness, breathing tube, blackness. At some point, I recall somebody, probably a nurse, asking “can you tell us your name and date of birth?” I could not. I flung my left arm vaguely towards the voice, attempting to direct them towards my hospital ID bracelet. I may not have known who I was but I knew how the interested parties could find out. I, myself, could not figure out how to open my eyes let alone my mouth.

Eventually, I did wake and was surprised at how lucid I found myself. I had a comprehensive discussion with my nurse about Leeds, where he had studied, and conveyed to him how uncomfortable my throat felt, an apparent result of my breathing tube. I was rewarded for my efforts with a lemonade Popsicle. All-right. I will never know how long the actual procedure took but I was unconscious for about two hours. My Leeds nurse disappeared once I regained consciousness. I feel he has the best nursing job; once his patients wake up his job is done and he moves on to the next unconscious patient. Minimal conversational topics required and he probably gets to witness some hilarious awakenings.

Where am I? A post opiate Popsicle

Now we wait for the biopsy results. I recall little from my university histology classes. What I do remember is the tissue preparation process was time consuming, required a finesse I could never muster, and that our instructor had to leave the university abruptly due to some rather shocking criminal proceedings. The third item is, of course, the most vivid. What I am attempting to say here is that histology is tricky and takes a while. It is also a discipline where most of the samples are deemed urgent in priority as they will all be required for cancer diagnosis.

Before I received my distressing PET scan results, the waiting period had a peculiar sombre feeling, as if I was suspended in time rather than participating in it. For reasons I cannot explain, the current waiting does not evoke any ill ease. It is a little frustrating not being able to update anybody, as there is nothing to update, but aside from that minor inconvenience, I am feeling rather ambivalent about it all. There is a risk that denial has crept back into my mindset. In the waiting periods, in the not knowing, there remains a possibility that the cancer no longer exists, the results could be negative, my enlarged nodes could be merely reactive. These thoughts, desires if you will, are not productive. They ought to be cast aside. There will only be disappointment if, or when, such thoughts turn out to be false hopes. This would be a situation where positive thinking is inappropriate. A more realistic approach is called for.

Healthwise I appear to be holding up ok. My blood results remain normalish. An interesting side note; in contrast to most lymphoma cases my LDH levels (an enzyme used to monitor cell turnover) have been normal throughout my illness. The marker of my disease has been my CRP levels. Currently, my CRP sits at 23 which, although technically raised, amounts to a mild shrug and barely audible ‘meh’ diagnostically. Certainly not the 280 odd they were at the height of my illness. So there is little disease progression as far as the lab is concerned. Although I have had (minor) night sweats four consecutive nights now. And there are these bouts of inconvenient teeth chattering….

Since my new PICC line was inserted I have been unable to straighten my elbow. Some wicked bruising and bicep swelling presented Thursday night and kind of indicated that there was more to the issue than mere muscle stiffness. An ultrasound revealed a haematoma near the entry site; good news really as the other possibility was a blood clot. Now I watch with fascination as the bruising extends down my arm, an apparent response of the haematoma to gravity. I am still unable to straighten my arm but the swelling has subsided, not quite completely, but sufficiently. I can at least get my arm through my sleeve now without looking too comical.

And so we continue to wait. Fortunately, our cancer accommodation still applies during this waiting period and therefore we do have a rather comfortable roof over our heads. We are, however, relying on government-funded Wi-Fi, hence the inappropriate shivering in highly public places such as Te Papa or the Wellington library. I am rather appreciative of such facilities!               

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.

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.  

I am not sure where I am going with this one

Many times this week I have attempted to write a post; started it with a few weak sentences, stared blankly at the screen, glanced around the room, back down to the keyboard, typed another feeble sentence, gnawed on my thumb nail for a bit, retrieved a beer from the fridge, thought better of it, returned the beer to the fridge, readopted my dazed and confused expression, stuck out my bottom lip, let my fingers slide across the guide bumps on the keyboard lightly tapping the keys without actually committing to a letter selection, changed music playlists, then gave up.

Even as I type now, I am distracted. It seems I reached a pivotal moment with the last post, a season finale if you will. How do I follow that up? Where do I go from here? Do you wish to continue hearing my vile self-pitying tripe? It was not only a milestone entry, it was a major turning point for me, and for Mike. I should be more excited about it than I am. I am aware of my feeling of indifference, and as a result, am disappointed in myself. The savage whips himself again. The rational, sane Liv, you know the one none of you have ever met, is aware why this is happening. Prior to the scan results I had this background knowledge that no matter how bad I felt there was the potential that everything could get much worse. This, in a way, was a comfort. I believe I had set the two month mark as a sort of pseudo summit, and once I had reached the top I realised there was another peak, previously obscured, only now visible. I don’t like ascents, although to be fair I don’t really care for descents either; so the prospect of this new climb made me exceptionally cranky. And then a little angry. And then a lot angry. Using the word ‘prospect’ implies two falsities. Firstly it suggests that I have a choice in undertaking the next part, which I do not, and secondly it infers I was unaware of the ‘hidden peak’, which again I was not. My poor reaction to the good news makes me wonder how negatively I would have received the bad news. At the time I believed I was mentally prepared, however with the benefit of hindsight, I seriously doubt I was. This is a somewhat irrelevant thought, but never-the-less it occasionally plagues my brain, usually around 3 a.m. in the morning.

Apologies for the exceptionally overused analogy. I am aware you are probably thinking ‘a mountain climbing simile? Really? Far from your best work I must say.’ Well you’re correct. Very unimaginative. I have utilised it in an attempt to explain how I felt that first week of my silence. The analogy was longer; I severely edited it so be grateful. What I am trying to convey is that emotionally I was in a bad place. Physically I was not much better. The two tend to go hand in hand. The chemo side effects that week were particularly severe. There were some positives, as this time the drugs were administered via my new fandangle appendage (i.e. a pipe sticking out of my arm), the dacarbazine only mildly hurt. The pain was so slight that I am only mentioning it here for interest’s sake not as a complaint; it hurt a little which I found interesting. It doesn’t make much sense for the pain to exist at all, certainly not in the area it was located, which was on my inner side of my elbow joint, below the drug administration point. Thankfully, it did not hurt my heart. Given that my PICC line ends just above the vena cava, I thought heart pain may have been a possibility. Happily, you no longer have to bear the burden of listening to my constant whining about my arm ache. I wish I could say the same about my spleen, but unfortunately it is still reminding me of its existence.

Whilst undertaking my PICC line research, I read a couple of posts from HL patients. The general consensus was that the third chemo cycle sucks more than a Rob Schneider film. I am inclined to agree. The fatigue was inexplicable and the nausea escalated from an initial sensation to many, many, physical actions. Along with the physical dilapidation, the mind was slowly sinking into desolation deep enough to warrant an inclusion in Dante’s Inferno. I then felt guilty about my own defeatism. These three process were combining to form a rather vicious feedback cycle which, much like my mutated B cell MDM2/P53 cycle, was struggling to arrest (yes I am a nerd). That was a week ago. It was a dangerous time for writing. At one point, in a desperate effort to feel normal, I attempted mascara. This was a mistake. The combination of my pallor, my rosy red nose and my eyelashes, which have sufficiently thinned to allow clumping of an epic scale, lead me to resemble a psychopathic clown rather than the intended 21^st century woman. Of course my eyebrows have barely been affected by the chemotherapy, so I believe I was also rocking a Bert style mono-brow. I am nothing but style and class.

You may be pleased to know that although I fell rather hard after my last chemo, I actually bounced back with equal vigour. This prior week has been extremely successful in terms of my physical health, which in turn helps my mental wellbeing. I may have even busted out an enthusiastic but arrhythmic white girl boogie at one point. I am unsure if this good health is because my body is beginning to familiarise itself with the chemotherapy regime, or whether the decline of my underlying disease is leading to an increasingly healthy base line. It is quite possible that a couple of quiet weekends followed up with remarkably laidback week has led to my generally healthy mood. But that option is no fun. I would appreciate it if you would all join me in striking that last reasoning from the list. I will come up with valid justifications for this action at a later date. I am rather proud of my bone marrow as it seems to have adapted to the constant bombardment and kicks in sufficiently post chemo; I haven’t been required to inject myself for the last month. This most certainly has added to my good mood. I know when my marrow is working, because I occasionally feel it in my sternum and femur. It is that proud sort of pain that one achieves after a successful gym workout. This is a far more agreeable solution than GCSF. So keep it up not-so-little bone marrow. You are doing a super job.  

It seems I need a distinctly set level of despair in order to trigger my creative ambition. This past fortnight I have either felt too well, or have been completely inconsolable. I need a little angst to keep things interesting. Nobody likes an over-animated bright eyes and bushy tails attitude. It makes us reach for a shotgun. It makes me, a firearm despising left wing vegetarian who loathes conflict, reach for a shotgun. Anyone who has watched Critter Christmas would think twice about bright eyes and bushy tails. Today, sufficient angst has been supplied; I have chemo tomorrow and I am throwing a minor Warren Gatland strop about it - scrunching up my mouth, dropping my mono-brow and accentuating my forehead creases. Sufficient optimism has been supplied by the good behaviour of my body. Only my spleen is causing me discomfort, and it is merely discomfort. Although the charcoal rings beneath my eyes are ever prominent - a reminder of my persistent inability to sleep. I shall have to avoid the temptation to watch a particular cricket match tonight; an all-nighter prior to chemotherapy is probably not the wisest move. But then again if I can’t sleep….

    

PET scan and PICC line anyone?

It has been a hectic week and I have felt like crap throughout. Currently I am enjoying a Renaissance Cherry Porter, so bliss is very near. This gives me an opportunity to recap on my week and hopefully restrain me from complaining too much.  Here we go…

I feel I may have built up far too much suspense in the ending of the previous paragraph. Sorry about that. Essentially, last week I had chemo Monday, overdid things Friday and spent Saturday and Sunday paying for it dearly. Sunday, I busied myself in differing positions of horizontal; lying in bed, lying on the couch, lying on the floor. I was so exhausted I could not even formulate replies to text messages. Sorry to those affected by this. I know hearing from me is the highlight of everybody’s lives. Fortunately, sleep came readily; I did not even need my nearly-empty-calorie-pills, which is good because I did not have any left, and my biological resistance to slumber inducing substances has reached the level where one antihistamine just doesn’t cut the mustard.

I suspect this current bout of woefulness is in part due to dread. My second cycle of chemo is now complete and this is a magic line in the sand kind of moment, as my treatment and prognosis after this point is dependent on the progress of the chemo thus far.  I am sure that all makes sense. Basically, I had a PET scan prior to my first chemo, and another one yesterday. If the tumours have reduced in size and prevalence, then yay, I stay with ABVD. If not, then treatment options need to be reassessed. This could mean a relatively new regime named escalated BEACOPP (I know very little about it) or, although highly unlikely, an autologous stem cell transplant. I will explain what that means if or when I need to. I won’t find out what my next type of treatment will be until Monday, when the results of my scan are known. Fun times.

Shall we talk about the PET scan then? I had intended this as separate entry, another retrospective one, however I never got around to it so I will do it now. The science behind this is quite cool. They inject a radioactive variant of glucose into you whilst you are in a fasted state. Tumour cells metabolise glucose at a much higher rate than regular cells, so in the PETCT scan they show up all red and angry, while the normal cells are grey and boring. We like boring. Everyone hope for boring. Right, so, I have to be in a fasting state, on the first scan this was fine, it was a 10am scan so it was no big deal. Yesterday it was a 1pm scan; I went from fasting to famished. I had retired to bed at a spritely 9pm the night prior, so by the time my appointment rocked around I’d passed hangger and moved on to total lethargy. I gave vague responses to the multitude of poorly put questions. They were particularly unimpressed with my response to the “Any chance you could be pregnant?” question; “I am pretty sure the chemo would put stop to anything like that”. Not the correct answer, just an FYI. It is crazy that pre-treatment they prep you on the odds of infertility and the like, and then any chance they get they like to ask you if you’re pregnant. I am not, I do not plan to be, and I am pretty sure my body wouldn’t be able to handle it if I was. It would tag out. Game over. Ok so no jokes allowed, granted it was a rather dark one, but I guess we are technically dealing with physicists here.

Once that rather dicey question has been inadequately answered we get down to the fun stuff. The lady (whom I fear I have portrayed negatively when actually she was quite lovely) fetches her radioactive glucose, it is kept in a metal case, in a metal syringe, and looks like something out of a Bond movie; she is donning a full lab coat, gloves and a radiation counter. The cannula is inserted into my right arm (last week’s chemo arm, so already in an utterly pitiful state), and promptly the substance is flushed through my veins. Boom! I am radioactive. I feel like I should have gone all Peter Parker on everyone. Unfortunately I was instructed to lie as still as possible for an hour. Absolutely no leaping with spider like projections from buildings. Damn.  I am not even able to read, as that demands an unfair proportion of glucose for my brain and they would like the distribution to be equal throughout my body, please. As I have mentioned, I was feeling crap, very very very crap. I think I may have slept; the drool present on my face when I was collected would definitely lead to such a conclusion. I was instructed to ‘pee’ (he actually used the word pee, which at least drew a smile out of me) using a separate toilet, as I am radioactive you know.

Then comes the scan. The scan sucks. You have to lay totally still for like 30 minutes, whilst going in and out of a prolonged CT scanner. Oh and you have to keep your hands above your head, still. This was hard enough pre dacarbazine - have I mentioned how much dacarbazine makes my arm ache? – but post chemo it was horrendous. Deep breathing and, I believe, some quick scanning by a fellow antipodean, meant I got through it with only the bare minimum of tears. I think at one point I may have shouted “I can’t go on!” a total “Do it to Julia” moment. Big brother was totally watching, cameras, microphones, the works. Who would have thought room 101 for me was purely keeping my hands above my head for half an hour? And I was a basketballer. I need to toughen up.

That brings me to today. I cannot recall if I have yet mentioned that my arm hurts a mighty lot after chemo. Well it does. It does so much that I have neglected to write this entry into my little black book, as my right arm was my chemo arm this time, and it is unable to hold a pen. So I am going full tilt on the typing, which to be honest, does little to relieve the pain. But do not fear dear readers! I have come across a solution. This solution is a PICC line, which I had inserted today. A PICC line is inserted just above the elbow joint. Using ultra sound and local anaesthetic, a wire is thread through the vein, running just under the fourth rib and into the heart. A tube then surrounds the wire, and a cannula is attached to the tube. No more needles, and a lovely little protective sheath for the dacarbazine (if indeed that is the drug of choice) to pass through rather than the vein. And, above all, hopefully no more bloody arm pain. Except now I don’t know which pain is caused by the darcabazine, and which pain is caused by the PICC line. What I can tell you is that occasionally I feel the line tickling my heart, which is a little disconcerting. It does cause sporadic heart palpitations, but it doesn’t hurt anywhere near as much as my spleen. I don’t think a splenectomy is on the cards, so don’t get your hopes up on avoiding that complaint. And the rest of my arm is still in agony from last week’s darcabazine, so I will be inclined to moan about that for a wee while longer.

Does this thing work for caffeine or alcohol as well?

That is my week thus far, I keep thinking paracetamol doesn’t touch the darcabazine arm pain, but then the drug wears off and anguish again sets in. I have a proper purple vein this time, still a little bruising, and a slight uncomfortable feeling in my chest when I slouch or breathe too deeply. They have x-rayed my chest to see where the line is sitting and everything is as it should be, so I guess it will be a feeling that, in time, I will become accustomed to.