Game changer

Sometimes, when my health is on the improve, I play a little game. It is a dangerous game. I pretend that all will turn out fine. That at some point, soon even, life will return to normal. We will rent a wee flat in Nelson, The Wood perhaps. Our cat will move back in with us. She will cease her biting ways. The flat will be near the city and we will walk or cycle to work. Ah, to work.  A job. Right. Becoming a contributing member of society again. Tricky business.

Our possessions are scattered throughout New Zealand. Various friends and family members are storing boxes filled with our crap; in garages, closets, chests, under beds, piled high in spare bedrooms. My books, my books are also scattered. I try to infiltrate the bookshelves of loved ones but usually, they too, end up in boxes. The books, not the loved ones. Gosh, things can get morbid mighty fast when grammar is overlooked. I must confess I never expected to open any of those stored boxes. It was all part of the game.

I left you in March (shit, was it that long ago?!) closely monitoring my fevers, platelets, haemoglobin and bilirubin. I started two blog entries but circumstances kept changing. My updates were obsolete before they were published. Like a newspaper. It is difficult to be witty and current. I’ve found opting for neither is the best approach. Anyway, there I was, March, obsessing over my bloods. I must apologise for I wasn’t exactly honest in my March post. Well it wasn’t complete dishonesty, it was more omission. Avoidance rather than evasion. Like Cameron. Allegedly. You see, the immunotherapy arrived at the eleventh hour, like a fairy-tale prince. I was a little too dependent on blood donations. Two bags a day, of both platelets and red cells. My bone marrow wasn’t working. It was packed full with Hodgkin’s cells. The marrow surrounding the Hodgkin’s cells becomes fibrotic and cannot produce any blood cells. My liver wasn’t working. Presumably, it too was packed with Hodgkin’s cells. I would like to thank all the blood donors out there. They kept me alive.

This new drug arrived and promptly terminated my liver failure. The bone marrow response was a little slower, but I have maintained a haemoglobin in the low 90s for at least four weeks now without any transfusions. Go team! Thrombopoietin (TPO) is the hormone that stimulates platelet production in the marrow. In a wicked feedback cycle, the liver produces the majority of TPO. The red blood cell equivalent, Erythropoietin (EPO), is produced by the kidneys. By having liver failure there was minimal production of TPO, which was fine at the time because my bone marrow was also failing and would have done fuck all with such stimulus, but once the two began working again it was interesting to watch my haemoglobin rise whilst my platelets lagged behind. I was reliant on platelet transfusions for about a week longer than red cells. In Wellington, protocol is to keep platelets above 20 for patients with fevers. You are not allowed to shave your legs until your count reaches 50. I am unsure if that is actually documented in the official SOP. These are the pesky issues I worry about now that the chemo is out of my system. Did I hear somebody say first world problem?

My consultant informed me he was rather impressed with my blood. I blushed. This is probably deemed showing off in an anaemic ward. But my cells had done me proud. I still take it personally when my haematological results amaze, fucked up, I know, I know. It is the nerd within me. Or the nerd that is me. Anyway, so impressed was my consultant that during an impromptu meeting he released us from Wellington. Mike and I were free to live in Nelson on a full time basis with me returning to Wellington once a fortnight for treatment. We were shocked. This was completely unexpected. More unexpected than the marrow failure. We had to take a moment or two to recover. Despite the southerly cutting through my now functioning marrow, Wellington had grown on me. Stockholm Syndrome perhaps?

  

Mitre Peak, Milford Sound

This occurred a few weeks back. Since then I have been a little distracted trying to cram the rest of my life into four weeks. Christchurch, Queenstown, Fiordland, Omakau – ok so that one doesn’t feature in Lonely Planet. I am still cramming. How does a Mid-May overnight tramp in Nelson Lakes sound? Great, let’s do it. Now. Let’s do it now. Tramping has a different definition in New Zealand, although both involve a sleeping bag and no showers. My fevers persist, however monitoring these has been complicated by menopausal flushes. Fun fact: your temperature does not rise during a hot flush. It does with a fever. Initially I was pleased; menopause is a process all women go through, I felt it was my duty as a woman to experience it. After a month of continual hot flushes I declared it unfair ­– the first time throughout my journey I have said such a thing. Still, my glowing red face does provide a conversation piece with women over forty-five.

It turns out merging back into reality is time consuming, exhausting, and rather difficult. My procrastinations are interrupted by self-imposed distractions. Looking for a flat in The Wood is not as romantic as it sounds. My cat still bites. And a job? Ha! I can’t even commit to a haircut. And I need to. I really need to.

     

Inpatient notes

It is rather difficult to begin these posts. For this particular entry I do, at least, have a rough plan in regards to content. Beginnings, however, are a little tougher. Rather than pouring over the notes I made as an inpatient, my eyes instead dart around the room in search of creative inspiration before finally focusing on inconsequential features. An item that has struck up particular interest with me today is a medium-sized faux Christmas tree leaning at a slight angle against the corner of the lounge area. Given it is now October I can only assume the tree has been in such a position for at least ten months. It may well have been sitting there for years. Perhaps it is doomed to lean like a naughty child for the remainder of its days, the transient tenant population here would never notice. Yes this unseasonable tree is an insignificant, yet still a distraction, and thus I am no closer to beginning this post.

“Pouring” over inpatient notes is somewhat hyperbolic. Such a word implies I wrote substantially over those five days, that I have screeds of brilliant jots just waiting, begging, to be stitched together, inevitably forming a mythically beautiful piece of prose. This is not quite reality. Indeed one day I merely wrote “two hours sleep total”, I mean, that is hardly Man Booker material. It is not even grammatically pleasing. But I guess we should be grateful that I did at least make some notes elsewise there is a high chance that I would still be waffling on about fake Christmas trees. I think the general theme one can take from these now infamous inpatient notes is that my first round of chemo went rather well. Almost eerily well. Like, I keep expecting something to jump up behind me, or to receive an ominous phone call, or, I don’t know, some sort of clinical setback involving zombies, vampires and rabid dogs. Unimaginative, I know, but that is where my mind first raced to.

I may have mentioned in my previous post that this ICE chemo regime is to be administered as an inpatient rather than as an outpatient. Hence the formation of inpatient scribbles. Despite my nocturnal rigor-fever-sweat-rigor-fever-sweat-sweat-sweat routine, I felt aptly prepared after my first night on the ward for the twenty-four hour Ifosfamide infusion I perceived I was receiving that day. It turns out that the Ifosfamide infusion happens the second day not the first. The first day is merely a thirty minute Etoposide infusion, which actually is a nice way to ease into things, but I must confess that administering drugs out of acronym order did boggle my over-analytical brain just a bit. If we may, just for the sake of completeness, confirm the actual acronym, then technically it ought to be EECIE. Not as memorable, granted, and phonetics could pose a problem especially as I have some accent confusion when it comes to e’s and i’s, but I feel it gives one a more accurate indication of drug order. But do not fear! The remains of my first day were not all in vain, I was rewarded for my efforts with another blood transfusion. I will blame my marginal haemoglobin for my more-than-marginal breathlessness in Wharariki. This transfusion was somewhat comical as, owing to difficulties regarding vein size and PICC lines, I currently have a central line protruding from my neck. I rather felt I resembled a paradoxical vampire. An uber efficient paradoxical vampire.

The Master would be so proud

It is difficult to know if the following sleepless night was due to the transfusion or due to the dexamethasone, which is given as an anti-emetic. Possibly it was due to both. Dex is hardly Prednisone but it does have the ability to keep one awake at night. What I can assure is that this was not merely a tossing and turning night. This was a ‘let’s go for a run’ night. My legs did not wish to maintain a horizontal position despite protestations from my heavy brain. Background nausea had kicked in you see, sleep would have been well appreciated. Instead I relied on mouthfuls of ginger beer, regular blood pressure checks, and Albert Camus to pass the night. That day I was connected via my neck bling to the ever-eager-to-beep pump machine for the remains of my chemotherapy, administered ECIE over thirty hours. I managed to sleep all day and all night. In hindsight the sleepless night may well have worked in my favour. It is best to be sleepy when immobile.

I woke from my slumber marathon much resembling a puffer fish. My hair and eyebrows askew; my hands, feet, knees, and cheeks bloated and swollen; well it all compounded to form this aggravated fish look. The Ifosfamide is given with litres of fluid. It is rather toxic to the bladder so the clinical team wish to keep urine output to a maximum, in fact they actually measure the urine. All of it. When they weighed me that puffer fish morning, as they did each morning, I had gained four kilograms. Well I can tell you, cancer or not, no young woman (I’m young in the haem ward) wishes to be told such things. Overnight? Four kilograms? If I had had any facial definition remaining I am sure I would have frowned. I informed my nurse that I had attempted to self-medicate with a nice New Zealand long black. Coffee, however, is a weak diuretic and the one she had to offer me was ‘very, very strong’. What does ‘very, very strong’ mean? Well it means I now know my bladder capacity is about 900mls, and I had to completely empty it three times in the first hour. That roughly equated to three kilograms, visible kilograms too; I had my cheekbones back within the hour. 

And that, friends, was the height of the drama. A mere puffy morning. I did not even throw up. I slept a lot. I continue to sleep a lot. I am not quite at narcoleptic levels but my body is certainly making up for the many nights lost due to rigors and fevers and sweats. In the first of what I can only assume will be many comparisons to ABVD, ICE went pretty bloody well. I recall that complacent day in January, a day that feels a lifetime ago, with horror, and horror is what I expected to experience again. Perhaps in preparing for horror the horror itself dissipates. Perhaps Kurtz just needed more preparation. These past two months I have watched fellow patients begin their treatment and never once, funnily enough, was I jealous of them. I did not wish to start treatment but now that it has actually begun I am glad. So for now I leave you as an outpatient feeling ‘not too bad’, although I do suspect the decline and subsequent fall will be rather drastic.               

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.                            

A blood and plasma transfusion; mixing both work and play

When I first started documenting my thoughts 21^st century style (i.e. online) I thought this particular subject matter would be an easy post. There have been many mental notes made, but now, as I take a break from designing New Zealand’s new flag, I am surprised and disappointed that I never committed these thoughts to paper. Or to file; whatever you call typing. Past Liv has let present Liv down as, five months or so later, shrouded in fatigue, I am attempting to recall these little gems. And gems they were, I can assure you, even if the content from here forth resembles quite the opposite.

Ok, I confess, the gem part was not exactly true. Initially I thought this entry would be rather interesting; a woman who works processing and issuing blood receives a blood transfusion – the next bestselling novel! But no. Each time I prepared myself mentally to write about it, I was struck down with vicious boredom.  Baring in mind that I am an awkward uber nerd – you should have heard my shriek of excitement when I discovered a monocyte participating in some hearty thrombophagocytosis on a blood film just the other day – yet still, writing this post was difficult and tedious. Even now I am procrastinating, two paragraphs and nothing interesting has been said. Except thrombophagocytosis. I am somewhat concerned that this will end up reading much like a reflective learning piece rather than a documentation of my thought processes, if this happens I do apologise, but be rest assured it will help me should I ever be audited by HCPC. The next paragraph, particularly, contains a bit of science. You have been warned.

We are flashing back to December 2014. My New Zealand readers are probably imagining glorious sunshine, the spring green grass beginning to turn yellow and their first sunburn of the season. Humph. I am yearning for a New Zealand summer, so I am dismissing your mental visualisations with contempt. No, this was Britain, so it was grey, bleak, cold, wind blowing from three directions, wet and the green grass was really brown sludge. Gumboots are fashion items over here. I had begun my sojourn in hospital. Upon admission my liver function enzymes were deranged, so my liver was not operating at its best. The liver produces some factors that enable coagulation. These factors allow platelets to form a plug and stop one bleeding to death. The liver dependent clotting pathway is measured by an INR test; most commonly used for monitoring patients taking Warfarin. Warfarin is a vitamin K antagonist, vitamin K is needed for hepatic cells to synthesise some clotting factors. I am trying really hard here not to launch into a full scale animated coagulation pathway lecture including an analogy where tissue factor is a fire alarm, platelets are firemen, contact activation is the water from the firemen’s hoses, and vitamin K is the dalmatian running around offering moral support. I could go on. And on. 

Warfarin patients tend to clot too readily, hence their need for warfarin. Fun fact, warfarin is also rat poison; the poor bastards bleed to death internally. It is the one flaw in Wild Tales. The therapeutic INR range for warfarin patients is 2.0 – 3.0, for non-warfarinsed patients it is 1.0. My INR was raised, 1.4 for those interested (which at this point I believe is probably no one) so I was at no risk of spontaneously haemorrhaging but if I was to undergo a procedure, say a lymph node biopsy, I had a high risk of bleeding.

Could this be New Zealand's new flag?

As I was to undergo a couple of procedures, the decision was made to give me three days of Vitamin K. This did not involve increasing my kale intake Brooklyn style, but intravenous administration. Some interesting notes, kale tastes better than intravenous vitamin K so eat your greens kids, and the vitamin K made me feel moderately unwell. Another amusing side note, I still received my tinziparin injections. After three days of vitamin K and no change to my INR, I was informed that a plasma transfusion was the only solution. 

I had recently undergone intense training in the occupation of issuing blood products for transfusions, and we all know that a little knowledge is a dangerous thing. What could go wrong with a plasma transfusion? Well, what couldn’t go wrong?!! TRALI, circulatory overload, anaphylactic reactions… not to mention CJD. I was not born in the UK now I run the risk of contracting mad cow disease? I do not even eat meat! I mumble a demand of methylene blue plasma. An attempt by the consultant to reassure does not mollify me ‘we only use Octaplas plasma so all viruses are deactivated’ ‘It’s the prions I am worried about, not viral transfer’. A scolding look from the consultant ensued. I assume my fellow transfusionists are shaking their heads at me; Octaplas treatment also damages prion ligands, so I was safe and sound and should have been well aware of that fact. But I was dying at the time (cue background violins), so please allow a little leeway. Another irrational concern of mine was they had not tested my INR since my morning dose of vitamin K. What if I became over coagulated? Skip the DVT, my brain is being exceedingly illogical here, it would be straight to pulmonary embolism and instant death. Have I mentioned it was an out-of-hours transfusion? Yip, 2am as my procedure was scheduled first thing in the morning. More first thing than 2am. I ask the night nurse to inform the lab of the midnight request. I have worked nights, I would appreciate the warning.

The plasma (FFP) transfusion itself is mildly painful. It is quite a viscous solution and, as it stored in frozen form, it is transfused at a rather coolish temperature. My already petite veins contract in protest. Being the middle of the night, I begin my obligatory uncontrollable lymphoma rigors, not perfect timing given I am thirty minutes into a product transfusion. I desperately try to reassure the nurse that this, for me, is a normal circadian response and not induced by the FFP. A sympathetic smile; this is my third evening under her care, she is quite aware of my nightly antics. Three bags of FFP transfused, no adverse side effects and a corrected INR. Oh and the procedure is cancelled. Too risky, the surgeon refuses. The large purple bruise on my right hand, a prominent feature for the week prior, heals in about twelve hours. Quite phenomenal.

By now it is Christmas Eve 2014, I have been in hospital for 10 days. The frequently promised lymph node biopsy is again scheduled. Once that is complete I will be discharged! The nodes are a little problematic, the abdominal nodes are massive but inaccessible. Small things like kidneys, bowels, aortas, they’re getting in the way. My neck nodes are more accessible but barley enlarged, and are nicely nested in a pod of blood vessels and nerves.  The biopsy has been planned and postponed three times already. Christmas Eve, however, it is a success and I profusely thank the radiologist. That biopsy was probably the best Christmas present I could have wished for. I wait eagerly in my bunker bed with Mike in anticipation of my discharge. Not since I was ten have I been this excited on Christmas Eve. The haematology team are rockin’ around the helium Christmas tree at the foot of my bed, it is 5pm. They announce they are going to ‘top me up’ as my Hb is 82. I am to receive a blood transfusion.

My helium Christmas tree

I, once again, respond irrationally to this. My heart starts racing, stomach flipping, abdominal muscles tense, if there had been any colour left it would have drained from my face. Why the prospect of a red blood cell blood transfusion provoked more anxiety than a gigantor needle protruding from my neck I cannot explain. But it did. I was unprepared for this announcement. Firstly, it was nearly closing time on Christmas Eve and I thought I was going home. And again a little knowledge…. 

At best a blood unit takes two hours to transfuse, and nobody has only one unit. I had at least four more hours of occupying my bunker. I have to admit I nearly turned the transfusion down. A haemoglobin of 82 is not that low you know, I can survive on that. I believe the only reason I did not decline it was because I was afraid they would refuse to treat me if I did not accept it. This, of course, would not have been the case, but at the time I was convinced it would be. 

When I am at work issuing blood I had never thought much about it; this was my job, you take the blood unit out of the fridge, you cross-match it with the patient’s plasma, make sure nothing nasty will happen, place it in another fridge then mentally give yourself a pat on the back for helping someone in need. But as a patient accepting their first blood transfusion, it was quite a big deal. I do not know why the red cells bothered me more than the plasma. If anything, it should have been the other way around. With the plasma I was paranoid about clinical manifestations, with the red cells it was almost entirely psychological. It is because whole blood is red, it made it more real, even though scientifically red cells are just another blood component. Scientifically, colour is irrelevant.

I did also have clinical concerns. I had intended, but never had the opportunity, to play around with my blood in the transfusion lab, for educational purposes of course. Blood typing is far more complicated than ABO D Pos/Neg. For example, there is more than one type of ‘A’ and so many variations of D that I do not wish to give a precise number as I will probably be wrong. Do not fear, I am not going to delve into the science behind transfusion medicine. If you are at all interested I encourage you to check one of my two internet crushes, blood bank guy. Sigh, blood bank guy. The other crush is Bo Burnham if you must know; yes I am well aware that he is far too young for me. Mike does know of both these crushes and funnily enough does not feel threatened.

I'm R1R1!

Anyway, although I knew I was A Pos from previous blood donations in New Zealand, I did not know my Rh phenotype nor if I had any other cool antigens. Nerdy excitement rose inside me when my first unit arrived and it showed that I was R1R1; how many times have I anxiously searched through our blood bank stock hoping to find R1R1 units! I was comforted that my blood may have possibly made some NZ medical scientist’s day back in 2010 or whenever my last successful donation was. I even WhatsApp’d a friend, who has been known to occasionally share my geeky enthusiasm, mid transfusion on Christmas Eve, an image of my unit. It is fair to say I got the desired response back. 

But suddenly, a feeling of unease overcame me. Not an impending feeling of doom, but a complete doubt of my phenotype. I have never been known for my convenience, it is highly unlikely that my genetics would offer such a thing. I cannot possibly be R1R1. It would make perfect laboratory protocol sense not to phenotype me and, as a woman of childbearing age, just issue R1R1 K neg blood. However I am currently a haematology patient and potentially facing further transfusions, although only the development of a little c antibody is clinically significant, if I do develop an antibody it will make any further blood transfusions a pain in the ass for both me and the transfusion scientist. 

Looking back, my logic was entirely flawed. Statistically, I was most likely to be R1r, so R1R1 blood would not stimulate any sort of cde antibody production. Also, I was that inconvenient patient that made some poor scientist, on Christmas Eve, search through the fridge for appropriate units! In fact, I was meant to have been that scientist, as I was listed to work Christmas Eve at the hospital ten miles down the coast. For the record I have subsequently found out that I am R1R1, and to be fair my immune system at that point was fairly incapable of amounting any sort of response, let alone developing a falsely concerning blood antibody.

The final note I make regarding my entwinement of work and leisure, is that I did not receive irradiated units. Hodgkin’s patients need irradiated units as they are at risk of GVHD (donated passenger white cells bury themselves into your marrow and start replicating as if they were your own, but they are not, so your body tries to destroy them and ends up destroying itself in the process).  At this point my official diagnosis was a mere formality, we all knew I had Hodgkin’s lymphoma, I was in the cancer ward and under the haematology team. I was obviously not at risk of GVHD, because they would not have chanced that particular side effect, so if anyone out there can tell me why I was not at risk then but am now I would be eternally grateful. I assume it has something to do with the chemo. Also, if anyone could tell me why Hodgkin’s lymphoma patients are more susceptible in the first place that would be appreciated, because I have not yet found it in scientific literature. Thanks!