Mushy peas

I know I promised this post would be more positive than the last. I am afraid I cannot keep

that promise. This post is again selfish. It is for me to vent, to dwell, to wallow in my own self pity. I am writing this to get the words out of my head. And my brain remains as mushed as a side of peas, so none of this is likely to make any sense. Continue at your own risk.

When I presented at Wellington Hospital in November with my crooked tongue, I was required to switch steroids. My steroid of choice is Prednisone. I’ve grown fond of it over the past year, and the dosage I was on (15mg) gave me all the Prednisone-goodness, without too many side-effects. I will complicate things here and say that because I am on immunotherapy, I ought not to be on steroids at all. Zero steroids is the aim, but well, they’re just so darn helpful. So roid me up. Anyway, presenting to a hospital with neurological symptoms gets the doctors a little nervous, so they switched me to Dexamethasone. Apparently Dex is like the go to steroid for reducing brain inflammation. Apparently I had brain inflammation. The neurological symptoms also meant that my nice low steroid dose was about to be upped. And boy did they up it. I am really quite susceptible to steroids, and my consultant knows that, but he was away and so they just prescribed the highest dose available, which is the equivalent to 100mg. I’m tweeked out at 60mg; at 100mg, my goodness.

Sleep was off the agenda. Food became a major focus. Then it became an obsession. It was exhausting. It started out fun; a little like ‘yay I can eat whatever I want, whenever I want, almost unreasonably.’ Then the ‘almost’ was dropped and it became simply ‘unreasonable’. I was knocking back six or seven meals a day, with snacks. I became fixated on food. I was lying on the couch, overfull, bloated, yet obsessing over the ice cream I knew was in the freezer. If I eat that ice cream I am going to feel terrible. But I want the icecream. I know, I will have just a small serving of ice cream. That will work. But our bowls are so big, and it was boysenberry ice cream, so I ended up with three scoops. One morning, I consumed an entire packet of TimTams in ten minutes. That is less than a minute a biscuit. I was going to dip them in my coffee, but there just wasn’t enough time to brew the coffee. No time for coffee! That was after my four AM cream cheese bagel. Let us just say that it was an expensive few of weeks. Now I can’t remember if we’ve got snacks in the house, and even if we did, I can’t taste anything except Habenero sauce (another radiotherapy side effect). Thankfully, the steroid dose has dropped, and my food fixation has passed.  

Unfortunately, three weeks of binge eating really plays havoc on one's weight. My face is round and puffy, like a partially deflated beach ball that has spent too many summers outside. I’ve lost almost all my hair. This, again, is due to the radiotherapy. It causes hair loss at the targeted site, and because my whole head was targeted, I got to lose it all. It fell out one afternoon while the cat sat on my knee. She finally got her comeuppance. Some stubborn patches of hair remain, which is uber attractive. Plus I have some wicked acne, perhaps caused by all the junk food. I am looking gorgeous for summer. But don’t worry, I did spend like an entire hour deliberating an eyebrow wax. I decided no. Nobody is looking at my eyebrows.    

That just leaves the brain mush. The fatigue. My brain is so slow. It is too slow for everyday life. Everything has become so difficult. It is like 90% of the batteries that provide my mental energy are exhausted, so I am running on just a tiny energy store, and I can only give a minute portion to any task. I sit at a cafe, and a sharing plate comes out. Ciabatta and balsamic and dukkah. Simply eating requires considered effort. My deliberate thought process is thus: OK so person A has finished reaching for the bread, and person B is reaching for the dukkah, so I can reach now, I need to move my arm straight out and take the bread without bumping anyone and now I need to stretch to the balsamic and, opps, balsamic was thicker than I thought and I have spilled it, and oh oh my hand is shaking, no that’s ok, it has steadied, right so the bread is in my outstretched arm, so I need to bring my arm towards me and lift my hand to my mouth. Ah fuck, I just dropped everything on my white top. It required immense energy and mental thought to reach for some bread, and then I messed it up. Which is fine, if I can laugh at myself, but it is extremely frustrating and sometimes I cry. In public.  

My personal deficiencies are amplified in my current state; things that I have never been good at I simply cannot do. I've never been good in social situations. It takes a lot of background effort for me to know what is socially appropriate. When to talk about certain issues, where to stand so that it doesn’t impact on others, how to sit at a dinner table; all this requires quite a bit of thought from me. And often, even before this brain mush, I'll catch myself doing something antisocial, like putting my finger in my ear. Now, I cannot do two things at once so if I am listening to somebody, I can only think about what they are saying. I cannot think about my posture, or my elbows on the table. I cannot eat, or even contribute to the conversation. My verbal communication was always poor, now it is pretty much absent. I am unable to formulate responses fast enough for society. Basically, guys, I can no longer rant. I can no longer listen to a rant, I can no longer contribute to a rant. My brain is too slow. For three weeks I could not concentrate enough read. Writing, fine, I have a lot of internal dialogue, background brain noise if you will, so I can pen my own jumbled thoughts. But reading was pretty much impossible. I had pretty much lost my brain.

There have been instances where I could not communicate at all. I forgot how to form the words. These instances were short-lived, only a few minutes at a time, but I’ll confess that I panicked. A quickening of breath, more tears. All I wanted to say to those around me was that I couldn’t think, but I didn’t want anything and I was happy and grateful that they were helping me. Instead, I hyperventilated and cried. I was finding life amazing, but I relied on others to think for me, to fully care for me, and I felt I couldn't communicate with them. This was more than merely accepting that I needed to ask for things, I actually had to think to ask for things. And then I couldn’t remember that I was required to ask. Does that make any sense?

It turns out I had a pretty good memory. It turns out I relied on my memory to exist. Once I lost my ability to remember, to tell the time, to do math in my head, I became aware of how others think. Because they were thinking for me, I began to understand their thought processes. During a public meltdown involving an op-shop Xmas tree and three decisions, I received a moment of true empathy from a stranger. She looked at me with raw sympathy and said “Oh, you’re really tired aren’t you? I get that way sometimes. Here, sit down.” There is a difference, you see, between understanding and empathising. Up until now I'm not sure that I have ever empathised. I mean, I would get sad if someone else was sad, and I would be sad for somebody, but I never really stopped and took a moment to get inside their mind. I have become aware of how intolerant I was, how particular I was, and how I never tried to understand let alone empathise. I am lucky that I now realise this, and that I have the opportunity to change. I need to maintain this compassion. Feel free to remind me that. And if you see somebody dithering in the street, or faffing (I can’t tell the time so I have become a faffer), it is probably because they cannot remember, or because the world around them seems a little too fast.

How am I coping? Well, to be honest, for the first couple of weeks I wasn’t. I spent a lot of time worrying that I would forget something, or worrying that I would be unable to do a task, a walk, a social outing. But, after some inspiring words from Mike, I have learned to adjust. My brain is slow, yet I was trying to live as if it functioned normally. I was asking those around me to slow down, but I needed to slow down myself. It all amounts to effort. I can remember, it just requires a bit more effort. I can communicate, I just need to think, think real hard, before I speak. I can cook dinner, it just takes a little longer and requires a bit more planning. It is very easy to rely on others, to submit, but if I do that then my memory will get worse, and I will become lazy. Effort is the key. Increased effort brings increased reward. I’m beginning to understand that it is permissible to forget; a grocery, a day, a thought. That is acceptable to fail; the reaction to the failure is more important than the failure itself. I am so fortunate that I have had an opportunity to slow down, to experience what it is like to live with a poor memory, with poor concentration. To understand how difficult a large portion of society must find everyday life. Mike and our families have been amazing through this period; my revelation has come at their cost. I guess all I can do for them is to maintain this tolerance and relaxed attitude. Because my brain function is returning, the loss is only temporary, the worst has past. Others do not get that luxury. Let us hope that I can remember this experience.        

Oh, and just a little bit of science for those interested. What I now have is termed central nervous system (CNS) lymphoma. It is rare in Hodgkin’s patients, and different to primary CNS lymphoma because it did not start in the brain. The haematology team speculate that the cancerous Hodgkin’s cells have invaded the CNS via the bone, thus avoiding the blood brain barrier. The brain and nervous system have a protective barrier separating themselves from the blood. This barrier is pretty selective as to what it allows across. Most medications aren't permitted, nor my pesky Hodgkin's cells. It is also why meningitis is so bad; the immune cells can't get into the CNS to fight the infection. My cancerous cells were pretty much like El Chapo Guzmán tunneling under a Mexican prison wall. Fun times.  

10th July 2016

As I mentioned in my series of dying thoughts post, I have decided to put a few of my dysfunctional entries online, as separate posts. They'll all be about my thoughts on dying so, you know, a little depressing. I was aiming to get them all up within a week. Best intentions, eh?

I must confess I don't really like this entry. It is too 'woe is me'. Other than the last paragraph, I don't really feel like this anymore. This entry was written in hospital, when I was rather emotional and in an awful lot of pain. I am sorry it is so cheesy.  

10^th July 2016

Better people than I have died. Younger people too. Better younger people. There was a teenager in the UK and when he became terminal he began a blog championing socialist ideas. The entire time he knew he was dying, yet he was trying to improve the world. I’m fifteen years older and I haven’t even started. And I like his writing more than my own.

I have a couple of regrets. The first is not really up to me. I regret that I cannot live longer, watch my husband age and flourish, see my sister get married [I did actually get to do this], enjoy future nieces and nephews. That is all out of my control though. These things aren’t going to happen so I ought not to pine about them. My twenties have been good to me. I have enjoyed them. My husband, the time I have had with him; well it is a good thing we married young. Many people don’t get to experience what I have. I am aware of this and I do appreciate my own life. Even now. Especially now.

The second regret is something I had a bit more say in. I regret that I haven’t helped the world. Since I was a little girl, I wanted to save the world. My plans were grandiose, unachievable, some may say. As I got older, everything I experienced I justified as research for how I could make the best impact. And, of course, I was just about to start my master plan, even if the plan lacked specific details. Yes, I am certain that I was just about to start. But I never did start. I came into this world, mucked around for thirty-one years, and will leave without making the slightest social mark. One could say that my life was wasted.

I don’t know how many of these thoughts are actually caused by my narcissistic personality. Or maybe it is a generation Y thing. I know that when I was initially diagnosed and there was minimal chance of dying, I got a little egotistical about making myself great, famous, a champion for humanity. And for animals too. So maybe, this regret of not saving the world just stems from my ego. For anyone interested, my master plan was to volunteer twenty hours a week (I hadn’t chosen a specific organisation) whilst writing a novel as socially poignant as Steinbeck. I had even drafted a plot pyramid. But the novel will never be written, and was probably rubbish anyhow.

But I think my advice to those out there contemplating the epic novel, the overseas adventure, the big job move; is just do it. I know it isn’t original advice. Nike got there first. But seriously, we shouldn’t let life get us. What are we waiting for? Most of the time we have nothing to lose. 

27th Feb 2016

As I mentioned in my series of dying thoughts post, I have decided to put a few of my dysfunctional entries online, as separate posts. They'll all be about my thoughts on dying so, you know, a little morbid. I am aiming to get them all up within the week.

It was around February when I began assessing songs on their funeral suitability. I even made a playlist. I obviously have grand narcissistic visions as to its length. What? Four days is too long? Hmm, ok I will reassess it then. But February seems to be when I realised that things weren’t going so well, even though I did not go into marrow failure until March. So I will start with what I wrote in February and move forward chronologically.

27^th Feb 2016

I feel like talking. I don’t know who to talk to. Mike and I are alone but he is too unwell to talk. Or to listen. He is trying his hardest not to be unwell, and I am trying my hardest not to be frustrated by him being unwell. But he does have the beginnings of a cold and I ought to let him, on this quiet Saturday evening, just rest and submit to being ill. He has done so much for me. I have become selfish.

Yet, when my head decides it wishes to talk, it is rather difficult to stop it. The thoughts swirl around my skull, before pushing through my brain and into my mouth. Sometimes an audible a sigh can keep them inside, sometimes a gulp, even a little headshake. Unfortunately, this usually gives the appearance that I am having a minor stroke, and the techniques never work. The thoughts always seep towards my tongue’s tip. They always come out eventually. Today, I will try and substitute an audience with my little black book. Death is on my mind. Not death as in the actual dying part, the part where you can’t walk or talk or bathe yourself, that only crosses my mind every so often, no, it is the pre-dying part that occupies most of my brain. And these pre-dying thoughts, well, they are punctured by flashes of a future where I do not exist. I am not dying yet, nor pre-dying, however the likelihood that both these stages will happen this year is high. High enough to make me want to talk about it. But no one wishes to talk of death. The ‘How are you?’ questions cannot be answered with truth. The enquirers do not want to know the truth. I do not want to know the truth. 

Katherine Mansfield sums up my thoughts quite well in a telegram:

“At the moment, too, I can’t write letters. I haven't the time. I’m late now for the Sphere & it’s a difficult job to keep all these things going. I write to nobody. Please forgive this, understand it & don't get anxious & don't telegraph unless you have to! I have such a horror of telegrams that ask me how I am!! I always want to reply dead. It’s the only reply. What, in Heaven's name, can one answer?”

http://www.katherinemansfieldsociety.org/13-june-1922

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.

     

If all goes according to plan

So. It has been a while since we last spoke. As you may have noticed I have retracted into my shell, occasionally sticking my irritable neck out for food and water, but generally content to sit in my own darkness, insulated from the outer world. I think it is my bald head. It kind of makes me look like a turtle. I am pretty distracted and this entry has been the victim of severe procrastination so I am just going to launch into it, skip the descriptions Wellington’s wind, of my fragile emotional state, and just get the words out there. I don’t particularly enjoy writing in this manner but let us see how it goes.

Some weeks ago, after my second round of ICE, I had a CT scan to check my lymphoma status. The results were good; I had achieved a partial response to ICE chemotherapy, only the nodules in my lung remained. BCSH guidelines (yes, I have read them) state that a partial response is required to proceed to the next treatment stage. Mike and I shared another public peck at the good news and preparations for the stem cell transplant began. It was scheduled for December 23^rd, a perfect Christmas present. I had only one round of ICE remaining.

I shall deviate here slightly to nerdily describe the stem cell transplant progress. It is better defined as a ‘blood stem cell transplant’, you know, to remove any controversy. The idea is the bone marrow is stimulated via high dose G-CSF injections administered over a ten day period. This means two injections in the gut each morning. By about day seven the bone marrow is producing so many cells that they do not have time to differentiate within the marrow, so they just remain as stem cells circulating in the blood. These ‘mobilised’ cells are then ‘harvested’ by apheresis: blood leaves the body from one tube, undergoes centrifugation, the stem cells are collected, and the blood is returned back to the body through another tube; a continuous process with only a few hundred milliliters of blood leaving the body at one time. It is similar to dialysis. The collected (haematopoietic) stem cells are then frozen. This is a preservation process as the high-dose chemotherapy (BEAM in my case) is so toxic that it kills the bone marrow and damages stem cells. It also melts away any residual tumours. After the BEAM, the frozen cells are reinfused into my body, take about seven to ten days to work their way into the bone marrow and Hey Presto! I am cured. If all goes according to plan. The stem cell mobilisation was to start the day after my final ICE infusion.

I check into the haem ward cranky, as usual, for my final round of ICE. As I have previously mentioned it is a three night incarceration that I am never eager to attend. And the final round was crap. I was irritable day one, threw up for three consecutive hours day two, refused all hospital culinary delicacies from there out, and spent day three trying to focus on objects situated directly in front of me, failing, and falling asleep. At two a.m. in the morning of my final scheduled night as an inpatient, my temperature spiked above the dreaded 38°C. I am usually pretty clued up when it comes to my fevers, I know when they are coming on, I know how long it will take for my temperature to reach 38°C, and I know when to take paracetamol to calm the bastards down. This particular fever, however, took me by surprise. I knew I would not be discharged that day and I was pretty bloody angry about it. The doctors termed me ‘unwell’, infection was presumed, and broad spectrum IV antibiotics began with a disclaimer: we may not be able to begin your stem cell mobilisation tomorrow if you have an infection.

Well, isn’t that a fun thought to try and get your head around, when you are stuck in a room with a stranger, a stranger who has many different snores (so many I could not count each noise), trying to comprehend that your schedule, the schedule that had taken three months to prepare, could be thrown out the window because of one stupid temperature spike. I had prepared for many scenarios where the transplant would not go ahead, but I had not prepared for failure before the process had even begun. I was angry, down to the depths of my stomach, and there was nothing at all I could do about it. Relief came the following day, a Monday, when the regular haem team were on and assured me that the stem cell mobilisation would go ahead. It was the most reassuring gut injection I have ever received.

Despite the continuous IV antibiotics, my body feverishly pottered along. A couple of tender lymph nodes bulged from my neck, a couple more sprung up in my groin. The fevers became the predictable events I remembered; a rigor one could set a watch to. These were starting to resemble disease fevers rather than infection. This thought comforted me; if I don’t have an infection then they will let me out of hospital and I can at least feel shitty in an environment of my own making. I decided these words of wisdom ought to be conveyed to the haem team.  Unfortunately, they did not share my enthusiasm. I should not be displaying symptoms of disease. If I was, then the transplant would not happen and plans B and C would not only need to be devised, but also actuated.

And it was about then that I completely lost my shit. I had, externally anyway, remained calm when around the clinicians, hid my fears, my worries, and had just concentrated on the information they divulged. I even offered them a sly joke or two. But, at that moment, I lost it. My tears became as uncontrollable as my fevers. It turns out that further relapse was also omitted from my list of possible failures. There was still the slight, very slight, possibility that an infection was causing my symptoms and, as I was losing my shit in more ways than one, further tests were performed. I vaguely recall cheering "I have c.diff, I have c.diff" from my hospital bed and fist-bumping my nurse as he wheeled me into isolation. I am not sure how much of that memory is actually fever. Probably most of it. The general sentiment of the moment remains: I was happy and the clinical team were ‘cautiously optimistic’. The persisting IV antibiotics had wiped out my microflora, my good little bacteria, leaving c.diff to run amok. But it did not take long before I realised that the infection was a false hope. A helpful little night nurse even told me that one doesn’t get fevers with a c.diff infection. I do not know if she understood the implications of her statement.

I remained in isolation to protect my fellow patients, received the daily G-CSF jabs and plunged back into lachrymosity, the tears only amplified by my frequent fevers and general pessimism. Harvest day was looming. The haem team continued to bathe my cells in IV antibiotics. If I did indeed have some superbug with freakishly good hide-and-go-seek skills, they did not want it interfering. Interestingly, if my disease had relapsed it would probably not affect the harvest. Hodgkin’s cells rarely make it into the actual blood, so my stem cells should be mutation free. I know I have used the word ‘rarely’ there. I will emotionally deal with that possibility at a later date. A far later date. Anyway, the only ominous factor, aside from those aforementioned, was the absence of bone pain. I had been on double dose G-CSF for eight days without the slightest orthopaedic discomfort. There is a minimum cell count (CD34) required before the harvest will proceed. That magic number is 20. (They never told me the units, and I confess I never asked.) My count, on the day scheduled to be harvest day, was 2.5. The harvest is planned over a week, I still had four days remaining to reach 20, so really it was no big deal, but having been in hospital for eleven days, and with all the setbacks, and the frequent toilet breaks, I did not have the mental capacity to deal with a number as low as 2.5. So I do you know what I did? I am sure you do. Yup, I cried. I ignored all of Oasis’ advice, and cried my heart out.

The following day, however, I was roused by unrelenting skeletal agony. And I smiled, a sick masochistic smile, as I informed the clinical nurse of the substantial bone pain. She shared my excitement and rushed to tell the team. I imagine she burst into the office, hands in the air singing “She’s got bone pain!”, the remaining nurses and doctors of all ranks tossing their papers in an act of jubilant celebration.  Hmmm, perhaps that was just another fever. When she returned I was back to tears. I was no longer enjoying the pain. My count that day was 10, but they decided to hook me up to the harvester anyway with the hope of collecting the required volume of cells over two days rather than just one. They did not want to risk losing any of my circulating stem cells. The panic was unnecessary. The next day my stem cell count jumped up to a whopping 45 and I was hooked up for a further six hours. I will tell you about it sometime. But not now. This has gone on far too long already. The stem cell harvest is done, they have double the cells required, frozen in a protective pool of DMSO, safe for the next five years.

Harvest time

So that just leaves the fevers. In the final days of this horrendous episode I had a CT scan. The results were damning. The lung nodules had grown, further nodules had popped up in my spleen; pretty much all of my lymph nodes were enlarged. A biopsy wasn’t even required. In the three weeks since my last scan I had once again managed to relapse, relapse with a vengeance. This means, of course, that of my three doses of ICE, one worked, one was dubious, and the final was utterly useless. All it did was increase my reliance on donated red blood cells and platelets. In July I just wanted to make it to Christmas without a relapse, instead, I have relapsed twice. Yes, I am a bit bitter.

My discharge came suddenly. I could not be discharged to the cancer accommodation we had been staying at for the last four months as I was still symptomatic for c.diff and my fellow immunocompromised inmates could contract it from me. Mike called his brother and we made a rapid transfer to his place, and, ah, we kind of haven’t left. I am not going back to the cancer accommodation. It is existence, it is not living.

As the clinicians discussed plans B, C, D, F and probably Z, I was left to battle the fevers myself. I had a column of cuts running down my thumb from the paracetamol packaging. The fevers became more and more frequent and debilitating with each passing day. I was a broken mess, and all the King’s horses and all the King’s men were struggling, really struggling. They have since put me on Prednisone, hence the hyperactive nature of this post, which usually works for ten days. I’ve been on it sixteen now and it is starting to wear off, a few symptoms are sneaking through, but it has given me a fortnight of faux energy and actually feeling alive. Obviously, the transplant did not go ahead, but plan BCDFZ has been written, in pencil, and further treatment is imminent. We are just not sure quite when. There have been, and still are, a few complicating factors, but I will go over those in a later post. I don’t have the energy to discuss them right now. We will be in Wellington for a few more months yet. After a year of treatment, I find myself back at the start.

  

My final ABVD complaints. Hopefully.

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

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

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

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

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

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

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

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

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

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

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

Bye bye bike

Last Friday, as I was cycling to Hove station, I internalised an ode to my bike. Although far from the best bicycle of land, it has been providing me a great service of late; the one mile ride to the station is significantly easier than the one mile walk and allows me to arrive at my workplace in a more composed condition. The cycle also saves me £2.60 a day, the difference between an off-peak bus and an off-peak train fare, and permits me to push my timekeeping skills to the upmost limit; an additional fifteen minutes lie in is always appreciated. And, no one is denying my quads could do with a workout, albeit merely a mile ride. So there I was, cycling along one Friday morning, not quite crazy enough to proclaim my love to an inanimate object aloud, but certainly complimenting my bike privately, thinking today would be an ok day.  

That evening I declared to Mike that my bike would become a character. I was not going to personify it, that would be a bit shit, but I was going to include it, somewhere. The odd thing is the finality of my ode was the theft of this now cherished, near immortal, bike. Imagine my surprise the following day when Mike, who had clearly practiced his announcement prior to delivery, informed me that my bicycle had indeed been stolen. They had bolt cutters, my bike lock was vulnerable, boom, bye bye bike. I would have been mightily pissed off had just a wheel been taken, a single wheel is barely of use to anyone, so initially I was glad that the bicycle (which I now regret not naming, as a pronoun would have made this an infinitely more interesting post) at least lived on to function for someone else, even if that someone was actually a thief. Then, with a wry smile as the cynical bitter Liv rose up within, I imagined the sharp incline we live on and the poor functionality of my said bicycle’s brakes.

The following Monday was one of those days. Westerly wind and rain lashing the bedroom window, the air temperature reminiscent of a New Zealand May rather than a British one. The gas faltered, hot water was intermittent, my shower cold.  Freezing, I dug through the wardrobe in search of my winter boots, slid them on, broke the zip, cast them aside in disgust and resorted to my chucks, an utterly inappropriate footwear choice for pouring rain. I did not have enough change for a bus, therefore the train was my only transport option, and you know what? At that point in time it would have been quite handy to have had a bike. I started off on foot, rain pit, pat, pat, plop on the hood of my raincoat, glaring at the all bikes on my street that had not been stolen. All the bikes with locks identical to mine. It was purely chance that my bike had been chosen.

The remains of a bike

I would not say I was angry, I was just frustrated at the inconvenience. Due to an overloaded NHS, my weekly PICC line care cannot be performed at the hospital I work at. I am required to attend a ten minute appointment at the hospital along the coast, three miles from Hove station, two miles from my house. Again, a bicycle would make that journey substantially easier. Without even really complaining (a rarity for me I know), just mentioning, casually, the theft to a friend of mine, her boyfriend immediately offered his bike for my use should I require it. What an exceptionally kind gesture. I would like to think that I would have made an equally generous offer had the situation been reversed, but one can never be entirely sure. It is probably by now apparent to you all that I do not hold the world in high esteem. I have lived a comfortable life, albeit shrouded in guilt, relatively unaffected by the worst of humanity, however it only requires a fleeting glance at media headlines to slump back in dismay. Slump back on my cosy couch, with plenty of food in my fridge.

With my cynical view of the human race in mind, receiving an offer of a bike came as quite a shock. Granted, you are friends with your friends for a reason, but a quick memory flick through the fog of my mind revealed that I do not associate with a single person that would steal a bike.  Yes, everybody is required to deal with a difficult personality or two, but I sincerely doubt that any of my difficult personalities would steal a bike. Put them in a room with corporates discussing profit margins and yeah, sure, they will probably make a decision decimating an entire distant community so they can continue to drive their Lamborghinis, but would they make that first hand, hot blooded, theft? Which is worse? A family of four starving due to redundancy brought on by record shareholder pay-outs or the theft of a pampered cancer patient’s bike? Unfortunately, I think I know which would make the headlines first. These people; the bicycle thieves, the advisory panels for billion pound companies, they are faceless unknowns. They are the humanity I get so irate about, yet in essence they are not humanity at all. I imagine a group human bodies, each body with a grey MS paint style block where the face should be. Most of us do not associate with these people in day to day life, yet I let myself become obsessed by their very existence. Independently each of these individuals would deny they have reached grey block face level, but when surrounded by others with grey block face tendencies, they are engulfed by the shade of solid grey.

And then it hits me. Here I am, almost indulging myself with a degree of self-pity - “Why do they not think of their victims?” – preaching, imploring, individuals to consider others, and yet I have not contemplated why the culprit took my bike in the first place. I gave some thought to the feelings of the bike itself, but not to the individual behind the action. Perhaps they were being pursued, in the dark, in the rain, rapidly, half panicked, half crazed, and chanced upon a pair of bolt cutters discarded on the footpath, my bicycle the first they saw with their new found tool, snip, heave, grind, relief; away they ride, my bike the hero. Or, rather, they had pressing family matters, at the hospital say, a desperate need to reach their father’s bedside, no transport available in the dark and stormy night, but, fortunately, access to heavy duty tools and a stranger’s bike, the theft made without further deliberation, summoning all their physical strength, battling the unrelenting gales, arriving in the ward, short of breath and drenched to the bone, wet black hair plastered across their forehead, the exact moment their paternal figure, in a harsh dying whisper, announces “I love you son” for the first time.  

Both are unlikely scenarios. What is probable, however, is that whoever took my bike was in a situation far worse than mine. Be their reasoning driven by finances, dependency, ill health; they saw velocipede theft as their only option. I have been inconvenienced; their entire life may have been destroyed. Should I leave my helmet and a note ensuring they are practicing cycle safety? Or should I shrug my shoulders, remember all the times I cursed my cheap rattling rusty bike, its limited gears, clunky tires, poor braking capability and general sluggishness; should I remember those faults and hope that whoever took my bike gained more convenience than I inconvenience?  

It is difficult, when things are tending to go awry, to focus on any positives. It is easy to be consumed by all that is wrong. I left the house allowing ample walking time to catch my regular train. A last minute platform alteration, a subsequent rush, half my coffee slopped over my hand and down my one pair of clean jeans, my phone, miraculously, lodged in my arm pit; right arm rising, attempting to stabilise the takeaway coffee, left arm squeezed inwards ensuring the phone does not drop to the ground, head tilting to the left as the falling phone tugs at my middleclass earphones, inappropriately yet instinctively staggering around the platform desperately trying to maintain my balance, despairingly watching my train depart from the wrong platform. All remaining emotional effort is spent trying to prevent the irrational tears from welling up behind my crocked, buckled glasses, and suppress the pressing urge to exasperatedly cry “Can something please just go right for me?!” This, of course, is when I appositely realise I have forgotten to take all my medication for the day. Again.

In these situations, which I regrettably admit are becoming increasingly frequent, it is difficult to remain, if remain is the correct word, pragmatic. When the weather is poor, the bus late, the traffic resembling a car park rather than a working road, each minute of delay dissolving my annual leave; it is difficult to remember that the bus is late for all on-board, others in the spontaneous traffic jam are also delayed, and it is raining on anyone who happens to be in Sussex. My friend has a saying: ‘this too shall pass’. I think mine shall be ‘Are you yet desperate enough to steal a bike?’ Ok, so it is not as eloquent, but hopefully it will allow me a little perspective when I catch myself in the wrath of Holden Caulfield like self-absorption, which is, in fact, my life.      

  

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!