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.                            

Hello again

This entry has been attempted, abandoned, written, scrapped, seven or eight times over the past four weeks. I managed to complete an entire post documenting my hair loss but it never saw the light of the internet. It was just utter crap. As a side note, I am now rocking an all over number one, although I still have scruffy bald patches sporadically scattered around my scalp. I may have to maintain the number one for a while yet, to avoid the mange look. My hair loss entry was an attempt to buy some time, in order to seem a little less negative, a little less whiney. I mean I had finished chemo, I should be happy and beginning to feel healthier and looking forward to my new positive outlook on life, right? Right? So why, when I started writing, did the words, quite quickly, plunge into black pessimism? Why did I feel utterly exhausted and somewhat depressed? Granted the chemo was still in my biological system, but surely there should be a small shred of excitement at the prospect of no longer having to attend regular chemotherapy appointments, of starting to own my body again. But I felt none of this excitement or optimism. I began to feel guilty about my lack of excitement. At times the guilt bubbled over into frustration; I could not walk more than a mile without feeling irrationally tired. It would take an entire day to develop the energy required to do the dishes, although I must say that once completed the satisfaction I gained was immense.

For those of you who know my father....

These feelings created two problems when trying to write. Firstly, the content was overwhelmingly pessimistic; I felt I did not have the right to write negatively in what should be a time of celebration. Secondly, it was rather difficult to write. The words failed me, a rare event I know. Even now I am finding the words difficult. I am sitting here staring at the screen, hoping, begging, for my vocabulary to return to me. Reading has become a non-event. I am heavily reliant on plot based novels, which bothers me. I do not overly enjoy such novels. I certainly do not find them inspiring. Misogynistic post-war American novels, with faint who-dunnit’ plots and an author who mildly mocks the reader with his own perceived intelligence. That is what I have resorted to. My continued reading of these beasts is almost masochistic.  

I have started three entries in my little black book. I got sick of writing them after a paragraph or two. It is interesting that they were all attempted at times of distress, times that often produce my best work. These paragraphs were not my best work. However they do document some of my low points, points where I am weighed down by guilt. Initially, after my final chemo session but whilst the cytotoxins remained in my system, I attributed the negativity and lack of excitement to my continued physical dilapidation. The effects of chemo persisted, all the regular grievances were present, but maybe as my health improved so would my state of mind. A later entry was full of pseudo-positivity, as if in writing in a optimistic manner would convince you, my dear readers, and perhaps myself, that the future did indeed exist, it was rosy, the past year had not been in vain, I was going to get better, the chemo was worth it. But the positivity was indeed pseudo; quickly the tone of the entry changed: nausea, exhaustion, hopelessness, fear, these started to creep in. Every aspect of my life was (is, maybe) taken with complete seriousness, I had (or have) a fear that I would never return to my former self. My sense of humour had been lost forever and I would continue a bitter woman for the remainder of my days.

Exhaustion became a truth serum. I lost that ability to critically evaluate what I had to say before I said it. I was not rude, but I could not hide my emotions, nor my fatigue. This was not restricted to mere words, facial expressions were also uncontrollable. I failed an occupational health meeting. I admitted my ongoing fatigue, my relatively despondent view of the world and my persisting gum infection to a complete stranger, who, correctly, decided I was not well enough to return to work. I did not hide my disappointment well. This was a couple weeks back, a Thursday. The majority of the chemotherapy side effects should have subsided and I ought to have been feeling better. But I was not. I was exhausted. My back hurt. I was cold. It was only 30°C outside so of course it was completely rational for me to be feeling cold. Friday; a train ride to Penzance to visit family. Again I was feeling cold and pessimistic. Sitting for most of the day did little to relieve the back pain. Saturday; I forced myself to attempt a small walk, my back was aching as I walked downhill and on the flat, but not uphill. It must be muscular. I need to stretch more. That night I turned down a glass of wine. The back pain started radiating towards my abdomen. I was concurrently feeling both cold and hot. Sunday; a car ride around South Cornwall. The back pain was becoming intolerable. A small jaunt to see the beauty of the western coastline was worth it, but upon arrival exhaustion required me to slump against a rock, wearing two windbreakers, as the others continued along the clifftop towards the better views. I was an invalid in a wild-west movie, surrendering to the perils of nature. Once back in the car I felt cold again, the shivers came on, the chat-chat-chatter of teeth began like the slow start of rain on an iron roof. And so the periodic shakes set in. Two hours of normality, two hours of cold rigors, two hours of uncontrollable sweating. Repeat. A two a.m. shower was required in an attempt to warm me up. It did not work. I must suffer the obligatory two hours before the cold will pass and I am greeted with too much warmth. The gym shirts were back out for the periods of sweating. The cold came on slowly, creeping over my limbs like the dark haze of evil present in most 1990’s Disney movies. Or maybe a Tim Burton movie. Probably a more apt analogy given my state of mind.

Slumped against a rock

Mike and I had spent the majority of our seven hour train journey back to Brighton discussing the prospects of refractory lymphoma, and other possible explanations for the shivers. Perhaps I was suffering withdrawals from the chemo. Perhaps my body was having difficulties re-establishing itself, like one trying to relearn the piano, initially hitting the wrong keys but eventually remembering the correct tune. Were the cold spells caused by my recent bald head? A little peruse of the Macmillan forums revealed a small few who had suffered similar symptoms. Ah, so maybe this is to be expected. Somebody had commented that women have issues with temperature control whilst their hormones regain regularity. Early menopause was also mentioned. Maybe I was just getting a cold or something. A day of rest would do me good.

Monday night, immensely thankful to be back in my own bed, I slept on a towel. Never forget to bring a towel. Such important advice. It is amazing how quickly one can fall back into old habits. We had the towel, midnight shirt change and the five hour paracetamol, lined up beside the bed, ready for when each would be needed. Tuesday I felt no better. In fact I felt worse. Dreadful, I felt dreadful. This could not be deemed a ‘normal’ response to the end of chemo. If it was then I could not go on. I had not felt this bad since before chemo. No, this cannot be a right. Something is wrong. I should take my temperature. Blah, the disposable thermometer has broken and now I can taste the dye in my mouth. Yucky. Best try again. Blah. Must be a faulty batch. I will try my less than accurate digital thermometer. 39.9°C, oh maybe the disposable thermometers were breaking because my temperature exceeded their analytical capabilities. You would think that at this point I would have gone straight to A&E, which is what Mike wanted to do. But to be honest I felt too crappy to go. It was 10pm at night, I did not wish to be admitted, I wanted crawl into my own bed with my blue towel, and so that is what I did. I knew I would not be neutropenic and I knew I was not septic.

The hospital visit came the next day. Mike had phoned ahead so I received VIP treatment; queue jumping - a benefit of being a chemotherapy patient. I was placed in my own little room and pumped with IV antibiotics. My veins have been destroyed by the dacarbazine. It took four attempts and a little bit of tissue leakage to get the cannula in. The phlebotomists require the little needles now. It is a pity my PICC line had been removed. I can only assume that I have lovely bacteria free muscles in my forearm now given the amount of antibiotic that missed my veins.   

My temperature rose, my heart rate was around the 115 mark, my blood pressure dropped and I spent four nights in hospital, in three separate wards. At one point I was back in the cancer bunker, in the same bed I occupied seven months ago during my diagnosis. Lying there, staring up at the tiny windows, completing a journey only to end up in exactly the same spot. Eventually I was transferred to the haematology ward where I was by far the healthiest and youngest patient. The youngest by about thirty five years. Two patients received their diagnosis whilst I was there and I had to suppress all urges to get up and draw biological diagrams for them. I think most people just wish to receive their treatment and have little interest in what their body is doing, or where it has gone wrong, or how cool their cells look on a blood film. I think most patients do not develop an unhealthy excitement when given a print out of their CRP levels for the year, nor do they instantly wish to graph these figures and request further data for analysis.

The official diagnosis was pyelonephritis, although no one is quite sure if this was actually the case. The diagnostic evidence was disjointed. It is somewhat academic as to where the infection was as the treatment regime is the same. The back pain still faintly persists. My CRP printout revealed I have probably had a smouldering infection since April. The cessation my regular prophylactic antibiotics allowed the bacteria to develop and my neutrophils, although at a reasonable level, are not functioning correctly (due to the chemo) so my body required external aid in defeating the infection. I am now on prophylaxis for a further three months. My CRP is returning to normal and my night sweats are no longer. Hopefully the slowly developing infection was the cause of my exhaustion, negativity and general unpleasantness. Hopefully it will be rainbows and internet kittens from here on out.

There are some positives from this experience. It forced Mike and I to discuss the possibility of me not being in remission. In all my negativity and despondency I had never really considered the prospect of the lymphoma remaining after treatment. I have read the scientific literature, it would be highly unlikely, and although I am not looking forward to the PET scan (which is tomorrow) on a physical level, I was not at all concerned about the result. Not until I started getting periodic sweats. This little infection also reminded me, and I think Mike, that although chemo is finished, I am not going to be returning to full health for a wee while yet. This is a frustrating admission. I had hoped I would feel nothing but better from here on out, but this will not be the case. I will not be walking the Norwegian fjords in August, the Greek gorges in September, kayaking the Adriatic in October, tramping parts of the Camino de Santiago in November. I will not be living my entire life in the next four months. Returning to full health is a daunting prospect. I need to get fit again. Never in my life have I been this unfit. I am relieved that the back pain was not due to physical inactivity, however a kidney infection does not explain the tightness in my hamstrings, calves and Achilles, nor the weakness of my shoulders, arms or core. A haemoglobin in the eighties may, however, explain my breathlessness.

And so that almost summarises the past four weeks. I guess other news of note is that I have resigned from work. For any of you out there who were thinking ‘god Liv, don’t quit your day job’ but were too polite to say as much, well too late! I had always aimed to retire by thirty. Does being unemployed count as retirement? Oh I have just refrained from making a rather cynical political statement here, please be grateful for my efforts.