Sharpening one's senses

Argh, mornings. Mornings are hard work. I am aware this statement is no grand revelation, insightful breakthrough of the mind, or epiphany; I have never liked mornings and I imagine about half of you out there would agree with me. But, currently, mornings aren’t worth getting out of bed for. Except that I am forced to. Pain has again arrived. Right sided rib and lumbar pain this time, restricting possible slumber postures to a mere two. Tactical Sevredol intake no longer seems to help; pain is winning the war on opiates. After a night locked and rigid, morphine levels diminishing, well mornings become unbearable. Pain wakes me. I rise, perhaps dress, then collapse, breathless, back upon the bed. Breakfast is impossible. Coffee, also. And I am just a dreadful person to be around. To say my fuse is short would be a gross understatement. It is morning now.

I am aware of my cantankerous nature. I work hard to bite my tongue, to try and diffuse my irrational agitation, but I tell you pain makes social interaction pretty difficult. I have no patience or tolerance or compassion, and I despise feeling this way. I preferred being brain numb and sympathetic than alert and cranky. A tourist, on a walking trail just ahead of us. My pace is that of a sloth; there is no chance that anyone will hold us up. We have nowhere to be, no reason to rush. This particular tourist, on this particular day, seemed fond of taking photos. She stopped, often, her phone in front of her face, snap, snap, snap. A sandy track through the manuka trees, a manuka tree, farmland, a cow, a stile, a stone. Snap, snap, snap each time she stopped. She never held us up. She had no impact on me, nor anyone around me, yet I was fuming. Then the pointlessness of my anger aggravated me further. I wanted to scream and cry and tantrum and rant. It requires too much energy to be angry. I can’t go wasting energy on minor incidents that have no ramifications on anyone else in the slightest. Outrage is pointless. It is hardly an emotion, it is a reaction, and an unproductive one at that.

Snap, snap, snap

Chronic pain seems to do that to me. The pessimist emerges. I concentrate on what I dislike, rather than what I like. I place fault at the feet of those around me. It is not the tourist who has caused my anger, I have caused it. I am on the verge of an eruption, the pain needs to be stopped. So another trip to Wellington, attempting to eradicate the pain, again, with radiotherapy. There are many types of pain, and most I can manage. Often, pain passes. That is how I tolerate  it. I know that it will pass, and I will feel good when it does. The pain I am experiencing now has been progressively worsening since December. It doesn’t go away. It is dulled by morphine, but always a small portion remains, chipping away at me. The radiation team suspect that the Hodgkin’s lymphoma cells are now inside my ribs, slowly expanding the bone, and that this expansion is causing the pain. Which is how it feels to me; like someone is trying to inflate each rib, coupled with a nerve pinch.

My appetite since the TimTam incident has not been great. I am not sure why this is. It could be disease, I certainly have some gnarly neck nodes at present. But, to be honest, I do not wish disease to be the reason. I am opting for denial. So, I shall look for other excuses. Mainly taste, I think. Since the November head radiotherapy, my taste has been lacking. I can recognise the six base ‘tastes’ and a few specific foods, but not much more than that. Fortunately, I can taste strong coffee as ‘coffee’, but I can’t taste any subtleties. I can barely taste beer as ‘beer’. It is not worth taking me to Garage Project at the moment. Occasionally, I find myself craving a dish that I know I shan’t be able to taste. This seems odd to me. It appears I can activate taste receptors within my mind but not in reality. Initially this lead to disappointments, further tantrums. But I no longer submit to these cravings. Still, the tantrums tend to remain. There are dishes and drinks that do taste exactly as expected, Coke, unfortunately, being one. Sometimes it is a relief to eat something and have it taste precisely as you remembered. Often, I am just left disappointed. I guess this is what global food corporations thrive on. A consistent bland taste.

Also, I have no sense of smell. Like I cannot smell anything. Again, this is side effect of the brain radiotherapy, so I’ve been unable to smell for about twelve weeks. You’re probably aware of the time frame. I do keep harping on about it. Anyway, it is unlikely my sense of smell will return. It is a peculiar feeling, having a core sense wiped out. Granted, smell would have been my choice, if I’d had a choice, I know I am fortunate. But I do feel a little dull, like I am missing more than just my sense of smell. Perhaps its absence will enhance my remaining base senses, and I will be a superhero again. Yes, again. Ok, I may have a Marvel complex. Actually a Whedon complex is probably more accurate. Like anything that vanishes, I did not realise how much I relied on scenting until I could do it no longer. I have had to adjust how I cook; watching the onions sauté rather than spinning around once they’re fragrant. This is on those rare days when I happen upon the energy to cook. And to be fair, I cannot tell you how palatable my creations are because I cannot taste them. It may be best for me to forgo cooking. My laundry abilities are also hampered. Either I must recall what I have worn and when, an unlikely prospect, or new systems are required for detecting dirty clothing. The old sniff technique is no longer valid. Dr Urbino’s affair remains secret. Florentino never gains his true love

Appetite, ah we’re back to appetite. Smell seems to contribute much to appetite. Perhaps I require bells to stimulate salivation as I no longer have my onions. Oh shit, my onions, I forgot my onions. Hmmm, well, I am sure there is a recipe out there that calls for blackened onions. No, no, don't worry, I'm not cooking. I know much better than to blog and fry. An inability to smell also impacts on food storage. I have never been one for expiry dates. But now I cannot smell if the hummus or milk, is foul. I just blissfully use it. Perhaps this is the cause of my nausea.

There are positives to an absence of smell. Public toilets, long drops, neither are a bother. Except I need to look a little closer before rushing on in and settling down. I guess pungent smells are meant to repel, to alert, to let one know that something is amiss. Smoke, gas, heat, petrol, biological fluids; all void in my nasal cavity. A little disconcerting, again when cooking. However, another positive, at least my nausea no longer feeds-back upon itself. Why the nausea? I do not know. All I know is that it isn’t smell related, but it is rather frustrating. I have become accustomed to vomiting in public, much like I was when I was eighteen. Except now it is daylight and I simply remove my hat, receiving compassionate glances rather than condescending snarls as I hurl into a garden.

So this turned out to be one giant moan. I do, once again, apologise for that. I guess I could claim this as an update of radiotherapy side effects, but really we all know I just felt like bitching. As usual. But writing this post has been helpful. I’ve realised that I probably ought not to cook dinner tonight.

Brain washed

I think I need to disclaimer this one before we begin. My brain is shot, you’ll find out why shortly. Typos are inevitable. Enjoy.

Since July, I have had two cycles of spinal radiotherapy. There were tumours and deposits nestling among my spine, their metastasising tentacles playing havoc with my nerves and really causing an awful lot of discomfort. The radiotherapy helps. It removes the pain, and my life has continued with only the minor drama of figuring out how to continue it.

So success, I would say, radiotherapy has been successful. Certainly for quality of life, despite the rampant fatigue follows. It is a tiredness so numbing that I forget the cause of it. Usually, I end up curled up on the floor in a tight little ball sobbing “why am I so tired?” And Hodgkin’s lymphoma is rather susceptible to radiotherapy, so I am fortunate that I only require five days of zapping at a time, at a rather low ‘dose’. Others must suffer far worse than I.  But despite my low radiotherapy dose, the spine itself has a limit as to how much radiation it can receive. After my September zapping I was reaching that threshold. If, or when, the spinal masses return I’ll need to increase my pain tolerance, because I won’t have the luxury of further spinal radiotherapy.

This means I have been having a little trouble trying to ascertain which symptoms I ought to be reporting, and which are just little niggles that become over-hyped in my obsessive anatomical monitoring. I mean nobody wants to hear about my bowels. Although, as a side note, the hospice has quite a helpful pamphlet on the issue, with tips on toilet posture and breathing. Anyway, despite over-monitoring, the biggest issue I have is admitting the symptoms to myself. A little bit of courage is required to mention that this stiff neck that I have had for four weeks or so, has now morphed into a two week headache. And the headache is starting to wear me down a bit. Maybe, maybe I should have reported that. It wasn’t until my tongue refused to obey my commands when chewing or speaking that I thought some symptoms may have gone a little far.

The hypoglossal nerve is a cranial nerve which runs from the brainstem, through a canal, before linking back into the spinal cord. It only deals with motor-function. If the nerve suffers pressure, from say a lymph node, the tongue tends to stray to the affected side. Right now, if I were to poke my tongue at you, it would skew to the right like a cartoon puppy. If I were to read to you, I would have the slur of a cartoon cat. Rather comical really. If it were caused merely by a lymph node and if the bloody pain would go away.  

A hospice nurse calls me once a week, just to check in and what have you. I am still acclimatising myself to the hospice system. Most of the time I am too healthy to require any services, except perhaps emotional ones. And I am quite young within the Nelson community as a whole (Hospice aside) so am not really sure where I fit in. But they call, and they are always there, and that is possibly all I really need. For some reason, the day the nurse called, I was sore and restless and maybe feeling a little bit brave, so I mentioned this neck pain and unruly tongue. It turns out that puppy dog tongues aren’t so cute, and Looney Tunes has fallen out of fashion since we all grew up and realised the entire show was casual racism. Or just flat out racism. Even in this post-Trump world, my new facial expressions and lingo just would not do.

It is odd how things then escalate. I wouldn’t say that it was panic, it was more rush. I have fortnightly immunotherapy trips to Wellington. Every second Tuesday. This call was on like a Thursday. I had been sitting on these symptoms for a couple of weeks. It made perfect sense to me just to wait until Tuesday. But no. Whizzed up to Wellington A&E on a Saturday, admitted into the ward to wait for a MRI scan. Although I was pretty jolly healthy, all things considered, I needed to be an inpatient to get the scan quickly. Otherwise I would be waiting weeks. It seems an odd system. We found ourselves in one of those teeth-clenching, tweeked out situations. Rush, rush. Wait, wait, wait. Earthquake. Rush. Wait. Scan, wait. Results, rush. Wait. I am sure you get the picture. I am simply terrible under those circumstances. The air turns dense, forcing itself upon my shoulders, my arms, and my legs. I was a wreck. It wasn’t the fear of the scan, or the results, or the implications, it was merely the unknown. The rushing, and sitting, and rushing and for what? I found myself in a space where I was desperately trying to pass time. Yet time is meant to be so precious to me. I guess I lost the ability to enjoy the time I had available. That can be dangerous.

Scan results always come with decisions. In an ideal world, my nerve was merely being pinched by a lymph node. But it does not take more than a quick gaze at global events to realise that the world is falling apart, and I am unsure if I even understand what the word ‘ideal’ means anymore. We were again in a rush situation. It seemed I had to make an on the spot decision as to treatment right there in the ward, the fifth floor ward, swaying with the frequent aftershocks. This is kinda how it went down for me. So, well yes there is a lymph node involved, but actually the pesky bloody lymphoma has found its way into the brainstem. Shit. The upside, my symptoms replicated what they were seeing on the scan and targeted radiotherapy would, at the very least, stop progression. Ok, cool, targeted radiotherapy to the brainstem. I can do that. Yup, fatigue for a bit, but not too long, sure, yup, I’ll do it. Hmmm, but yeah there is something else. There is this other patch, on the scan, unrelated to your symptoms. It isn’t quite in your brain yet, more in the membrane around your brain. But it is close to your frontal lobe. Huh. So the options you have are to target the sight causing the symptoms, or, entire brain radiotherapy to remove any other cancerous cells. Entire brain radiotherapy will leave you with at least six weeks of chronic fatigue, fatigue you could only dream about. If you are lucky enough to dream. Targeted radiotherapy will give you far less fatigue. Decision please? My Scottish sister clutches her chair as a larger aftershock hits. She is out of practice.

I won’t draw it out any longer. The decision switched three or four times as the differing medical teams decided which option was best. It was ten minutes before my planned radiotherapy session when Mike and I found out how much brain was going to be zapped. Whole brain radiotherapy was the answer. It would be too difficult to match symptoms if the lymphoma breached the brain membrane in the future. Best to get rid of all the cells now, you’ll get to enjoy the rest of your life with a numb brain, but hey, at least you’ll keep your vision. And it will lower the chance of a stroke. And the numerous other benefits of keeping Hodgkin’s lymphoma out of the frontal lobe. Really, it is a no-brainer. Groan away.

So now I have had my brain zapped, five times, which is nothing on what the poor bastards with brain tumours have to go through. A few guys I have met were doing it for six weeks. I am in awe. I honestly feel like my brain has been pureed. My thought processes are so slow that it feels like the world is on fast forward. Most of the time it is amusing, like a trip or something, and I watch the world spaced out, boggled by the smallest of incidents. But then I am required to do something tricky, like say words that make sense, and I freak out a bit. All of the brain guys are going through worse than me, far worse, I salute you. You’re getting me through my self-absorbed fatigue phase.

Losing my hair again, just in time for summer

I ought to write about the actual radiotherapy sessions. It is different, having it done to the head, rather than to spine and the abdomen. They mould a mesh mask to you, for one thing, then the mask is clamped to the bed. I panicked a little when the mask was being made. I was worried I wouldn’t be able to breathe so I kept my mouth ajar at an odd angle. The mask is mesh, as I said, so air supply was not at all a problem. Keeping my mouth at an odd angle for twenty minutes each session was more of an issue. Your eyes must remain closed throughout the session, and there was a vague smell, like faint gas mixed with an overheating appliance. Anyway, to the head is different, and more frightening, and kids do it.

This is where this post turns selfish. The biggest difference is the fatigue. I am going to try and explain it here, in the hope that I will stop going on about it in the real world. Because it seems to be all I talk about, it is all I think about, and those dealing with me on a day to day basis must be pretty bloody sick of it. I have become so self-involved that it hurts. I know gradually over this entire illness I have been sinking into selfishness. But right now it is pretty close to consuming me. This fatigue is unlike anything I have ever experienced. It isn’t ‘oh take nap’ fatigue. The nap won’t help. It is like I am in a constant state of inebriation. Without being jolly. Well, sometimes I am jolly. All those little tiny choices you make, daily, without even knowing you’re making them, I now actually have to think about them. Like really fucking think. I have never been very decisive anyway, so deciding whether to wear pyjama trousers or track pants is excruciating. Because the answer is probably wear shorts. And then I freak out.

That scenario, which is not exaggerated, only relates to me internally. Now let’s try inserting these flawed thought processes into social situations. Or having to make a decision for someone else. Fuck me. I have just returned from a pretty spectacular fail in regards to a catch-up lunch. I can’t, like, pick a table or a café or even really cross the road, and I can’t remember time at all, so I can’t remember when I last saw someone or whether it was last week that I had radiotherapy (it was because I’ve just looked it up) or even figure out that in three months massive things that don’t involve me having fucking radiotherapy could have existed in somebody else’s life. I haven’t figured out how to tell people that what was cognitively normal last week is now impossible. Not a slow demise. A giant collapse. I need a TFL badge or something. So I guess this is the selfish bit, where I openly apologise to everyone and say I am trying, but I don’t know the best route home, and I can’t choose a flavour of potato chip.

I am unsure if I have conveyed how smooshed I feel. This post is poorly written. I know it is. I know the grammar is poor and the tense changes are difficult to read. I know I have used many words incorrectly. I have tried to write clearly, but I know it is not of good quality. And I cannot fix it, which is very difficult for me to accept. But that is where my brain is at. The next post will be more fun. I promise. I mean, I am pretty sure I have smashed the world record time for eating a packet of Tim Tam Classics. There could be a time challenge brewing.        

  
10 December 2016

So because I cannot remember a bloody thing, I had to re-read this post to prevent severe repetition in future posts. I can’t promise there won’t be repetition, but it I can say that I have done all I can to minimise it. Anyway, as I was reading away, I had to stop myself from proofreading this entry. I realised that if I corrected the errors, the purpose of the post would be lost. But there is a paragraph that doesn’t make much sense, so I have tidied it up:

Scan results always come with decisions. In an ideal world, my nerve was merely being pinched by a lymph node. But it does not take more than a quick gaze at global events to realise that the world is falling apart, and I am unsure if I even understand what the word ‘ideal’ means anymore. We were again in a rush situation. It seemed I had to make an on the spot decision as to treatment right there in the ward, the fifth floor ward, which was swaying with the frequent aftershocks. This is kinda how it went down for me: "So, well yes there is a lymph node involved, but actually the pesky bloody lymphoma has found its way into your brainstem." Shit. "The upside, your symptoms replicate what we are seeing on the scan and targeted radiotherapy will, at the very least, stop further progression." Ok, cool, targeted radiotherapy to the brainstem. I can do that. Yup, fatigue for a bit, but not too long, sure, yup, I’ll do it. "Hmmm, but yeah there is something else. There is this other patch, on the scan, unrelated to your symptoms. It isn’t quite in your brain yet, more in the membrane around your brain. But it is close to your frontal lobe." Huh. "So the options you have are to target the site causing the symptoms, or, entire brain radiotherapy to remove any other cancerous cells. Entire brain radiotherapy will leave you with at least six weeks of chronic fatigue, fatigue you could only dream about. If you are lucky enough to dream. Targeted radiotherapy will give you far less fatigue. Decision please?" My Scottish sister clutches her chair as a larger aftershock hits. She is out of practice. 

Oh, the places you'll go

The other day, on a taxi ride from Wellington hospital the driver announced to us that he knew a miracle cure. It would cure anything. A doctor had told him so. It is at this point that I begin to shuffle awkwardly in the backseat, grit my teeth, mentally preparing my politest “mmm’s”, “ahh’s” and other uncontentious sounds. Mike, also, dropped his eyes and began fidgeting. Chocolate and laughter were the driver’s super-secret pick-me-up. He even gave me a fistful of chocolate to prove his point. And that’s fine. It is nice, even. But I was pretty concerned he was going to start touting hydrogen peroxide or turmeric lattes. A gluten free diet and magnesium at night. People do, you see. It is probably all in good faith, but that doesn’t make it any less frustrating. Because my magnesium is measured weekly and immunotherapy requires an inflammatory response so turmeric ain’t gonna help. No, no, your gluten free, dairy free, refined sugar free organic air diet isn’t going to cure my cancer. Oh and hydrogen peroxide? The so-called miracle cure. Gives your body an extra oxygen molecule, you say? Well, I could explain the complex biological process called breathing to you or, or, I could whop you round the head for exploiting vulnerable people with what is essentially a pyramid scheme. And I whop good. I’ll use every damn gram/L of my 104 Hb to lay the smack down. Somebody generously offered me God. He has a sense of humour, I’ve been told. I am not sure that Syria would agree. And what did I just say about exploiting vulnerable people? Something that does make me feel better is coffee. No turmeric. Strong coffee. It’s required to get through the day. Actually, I’ll put a pot on now. See if I can’t up this writing game a bit. Chocolate and laughter do help too. And cheese. And beer. The taxi driver didn’t do too bad really.

   

Emily McDowell, who’s had cancer, has designed a bunch of cards. One says “I am so sorry you’re sick. I want you to know that I will never try to sell you on some random treatment I read about on the internet.” The fact that this card exists, has a need to exist, sucks. I would like to see a bucket list card. Something like ‘No, I’m not just ticking you off a list.’ At this point in my life it is dangerous to have lists. This is the time where I can ‘live the moment’. A list would be restricting, and a little insulting. I am never going to be happy about tagging out early. No number of ticks are going to make that ok. That is not to say I haven’t been doing things. I have, just not in any particular order, or for any particular reason other than an impulsive urge. I know I said earlier that I could only find positive end-of-life blogs, and that this one wouldn’t become one of those. Well, it probably won’t, but I have learned that the reason they’re possibly all so fucking positive is because on the down days the individuals are too tired to write. Or if they do, the words are not concise enough to make their blog. I have entries I wrote when I was rapidly losing my mind and, funnily enough, they make little sense.

So I know I just announced my disapproval of diets, lists, and positive terminal blogs, but I have cancer so my memory is a little dodgy. Some may term it “hypocritical”, but hey, let’s not use labels here. I remain, and will continue to remain, a vegetarian. And sometimes, when one reads that something is a possibility, like standing on the rim of an erupting volcano, one just can’t help but think ‘fuck, I need to do that’. I never knew that was something I wanted to do. Neither did Mike. Neither did my sisters. But there we were, sometime in August, trying to start a crazy volcano cult in Vanuatu. Unfortunately, the cult didn’t take. I think we would have had more success had my hair been longer. Hair length is directly proportional to cult uptake rate, right?

My medical team don’t need to know about the volcano incident. That’ll remain our little secret, if that is ok. They know I am travelling, it is just that sometimes communication issues arise. They’ve heard ‘boutique resort’, when what I really meant was an off-the grid one room hut made from bamboo branches and banana leaves. It’s merely a matter of interpretation. They thought I meant Cairns, when actually I meant a boat an hour or so off the coast of Cairns. You know, on that big ass reef. Oh, you thought I was going to be looking at the reef through a glass bottom boat? Crap, no I meant through a snorkel mask. Man, I really need to work on my communication skills. So many misunderstandings. Whoops. Hindsight, eh?

There are practical issues that need to be considered when traveling whilst terminal. Again, these do not appear on any blogs. The issues range from the obvious: flight time, hospital proximity, fatigue management; to the less obvious: transfusion facilities, border medication policies, transportation quality. With my prednisone biceps and thighs, I cannot stand on the back of a four wheel drive ute. Just little things one needs to consider. Insurance. Insurance is another issue. I know in the UK there are companies that will insure cancer patients. I have heard that there is one in NZ. I don’t think any will insure a terminally ill patient. Some won’t go near me. You can almost hear the website laughing at you. I tend to travel without insurance. Like, I have it for my bags and stuff, but medically, no not really. Southern Cross have a box you can tick that says you have a condition that you don’t want insurance for. It means that, technically, if I were to break a leg, I would be covered because it is unrelated to my condition. However, I imagine they would find an out there. I imagine that everything would somehow be related to my condition. We use Southern Cross anyway, despite knowing we’re probably going to get screwed if anything should happen. 

On our first trip I searched for travel advice. All I could find was information on flying with oxygen tanks. OK, so I’m not that sick. And that was something that surprised me. On a flight to Apia, when to be honest I wasn’t the healthiest, I glanced around the plane and realised I wasn’t the sickest on-board. Sure, I probably have the shortest life expectancy, but I don’t need a wheel chair or special assistance. Not yet anyway. I’ve found that secrecy works best. You never know when Jetstar will decide you’re too ill to travel. I think of it like I’m a kick-ass superhero. Ok, well yeah so my powers are a little faulty, but my identity still needs to remain hidden. Sometimes, duh dah dah, I am unmasked, usually at communal dinner table with that kryptonite question: “so what do you do?” Quick guys, what do I do? I haven’t come up with a decent response yet. “Finding myself” sounds wanky, “retired” sounds sarcastic, and “well, actually I am terminally ill” really kills the conversation. It is a tricky yet frequent question. I am fortunate, in a way, that nobody from my past tends to recognise me with the short hair and all. But I have always been slightly awkward, so when somebody strikes up a conversation with me, in the supermarket say, and they think they’re talking to a stranger, yet I’ve known them most of my life… well it’s a dilemma. Because if I own up the first question they’ll ask is “what are you up to?” And let’s be honest; I’m up to fuck all. A common bum reliant on opiates, caffeine and bloody Mary’s to make it through the week.

I'm all at sea!

If I have pissed off any terminal patients because they feel miserable while I look like I am on top of the world, don’t worry, I’ve also felt like shit. It’s just that none of those entries make any sense, and often the hard times soften in memories. Think of the all things you no longer need to worry about. Saving for a house. Next summer’s fashion. Flossing. These are aspects of life that just no longer matter. You can raise a middle finger to your phone when it reminds you, for the tenth time, that you’re listening to music far too loudly and it may cause hearing loss. Ha! Not really an issue. Try bugging someone else little phone.

Gosh, so this post has gone nowhere. I guess the main purpose was to let you know that I am still alive. I’ve spent a good portion of the last six weeks in locations without cell phone or internet coverage. There’s been a bit of swimming. My Hickman line is gone, you see, so I can snorkel with turtles and sharks and nemos. Again, something I never thought I wanted to do, until I nearly couldn’t do it. That’s the point. A list implies that things need to be done. I prefer to think in terms of things that can be done. Opportunities, not obligations. A list has an end and I don’t want an end.

My Brentuximab Fling

Clinicians and patients differ in their opinions about Prednisone. Clinicians seem to view the drug as a last resort, a temporary fix to be used sparingly for a short duration. As short as possible. We patients, however, love the stuff. It makes us feel wonderful. We can frolic in the sunshine, climb hills – slowly, but we make it – talk incessantly and feed constantly. In short, we feel well and like to stay on the steroid for as long as we can.  Oh there are some negatives; degrading quad muscles, degrading biceps, minor sleep impairment, facial puffiness, and some funky liver enzyme readings, but did I mention I sunshine frolicking? I was allowed Prednisone over the Christmas period. It was wonderful. It even offers me temporary reprieve from my rigors. Simply wonderful.

My ICE relapse complicated further treatment plans. Actually, it put a complete halt to them. Other options were required. The easiest was to use a different strain of chemo, but I am kind of running out of those. I have been exposed to most chemo classes, therefore the chance that a different agent will actually help me is limited. The resistant cells will merely grow stronger. I think there is one chemotherapy class that I have not yet tried. Another option was a targeted chemotherapy drug called Brentuximab. Hodgkin’s cells express a cell marker called CD30. It sticks out on the cell like a little flag declaring its individuality from those surrounding it. Brentuximab contains an antibody complex that targets CD30. The drug floats around the body searching for any CD30 flags. When it finds one, the antibody attaches to the cell and pumps it full of a chemotherapy agent. It is a lock and key approach. Imagine you are standing in a hotel corridor with a key but no room number. The only way to find out which room you are in is to try all the locks. Oh look, the key fits in this lock, this must be your room. But wait, someone else is already in the room. Well you’d better punch them in the face, Bruce Lee style. That is pretty much how Brentuximab works.

This drug had been around for a few years now, but it is usually only used for patients who relapse after their autologous stem cell transplant. There have been a couple of trials using it on patients pre-transplant, but they are not sufficient for the New Zealand drug agency, Pharmac, to automatically fund Brentuximab. Strangely enough, the New York blogger I mentioned, probably a year ago, was a participant one of those trials. It is a small Hodgkin’s world. Brentuximab was the drug my consultant wanted to use so he asked Pharmac to fund it for me. This required a bit of research on his behalf, a named application followed by a cost benefit analysis. I don’t know if they attached a personal reference and a photo as well; it did sound complicated. For my non-New Zealand readers Pharmac is deemed a bit of baddie. They only make negative headlines over here. Nobody wishes to be denied treatment for financial reasons, and media outlets, well, they eat those stories up. In a Christmas pantomime, Pharmac would be booed on entry.

The application was two weeks into another limbo period. One would think that with all my prior practice in waiting, my patience would now be pretty good. It is not. Well it is to a certain extent. Tell me there will be no news for a week and I will be fine for that week. But once those seven days elapse I start to become restless, distracted, cantankerous. Initially the wait for Pharmac was to be three days, then seven, then ten. I did not expect the funding to come through. I expected them to reply “Try more chemo. If that fails get back to us.” In an odd ironic twist, if they didn’t respond before a certain date, I was going to require the chemo anyway. One can’t help but smile at that. But Pharmac responded in time. They responded with a yes, which leaves me a little confused – do pantomime villains actually have layers? Our families were ecstatic with the news, but I must confess I felt indifferent.

The ten day wait for Pharmac was nothing compared to the wait for the actual drug. There are no stocks in New Zealand. An Australian company said they could deliver it to us in a week, with it arriving Christmas Eve. I was to attend the day ward the Tuesday after Christmas ready for my Brentuximab. But it hadn’t arrived. It was “in transit”. Transit from where, no one knew. They weren’t even sure if it was in transit to Wellington, or to the Australian company. Just that it was in transit. For the next two weeks we spent our days waiting for a phone call announcing its arrival. Eventually we got a call “Ah it has left Australia”. What? It was only now in Australia? A call a few days later “It is in Auckland. We will try to get an overnight courier, so come in tomorrow afternoon.” It turns out it was held up in customs in Auckland as it cost (far) more than the GST import threshold, and customs would like some tax please. I am not sure how that was resolved, but I know it infuriated my clinical team. It took three weeks for the Brentuximab to get to Wellington. Some say it was sent by kayak.

During this waiting period Mike and I binged on the second season of Fargo. It was a bit fucked up. Not the scene where they bury a guy alive in molten asphalt, I can handle that, but the thirty year old wife who has lymphoma and is on experimental drugs. And we know she dies. We know because Molly’s mother was dead in the first season, and she died of cancer. Ah but we’ll just let the senseless killing around her, around us, distract us from battles that need to be fought, fought without killing anyone. That and Kirsten Dunst’s performance. Which was awesome. 

Anyway, after my Penelope inspired patience (and weeping), and some excitable distractions courtesy of a surprise visit by my Scottish sister, I was ready for this Brentuximab shit. I was all psyched up, prepared for all the worst side effects, and it was totally anti-climactic. A little fuss and excitement was had in the day ward, but physically nothing. Nausea: nil. Cell counts: completely normal. Hair loss? Nope, more like super hair growth, which is good because I was looking like a humanoid cylon prototype, with tubes under my skin and a shiny skull. So there were no side effects. Maybe I could imagine some fatigue. But that could also be the steroid withdrawal. And the infusion only lasted thirty minutes. I had it in the day ward. No overnight stays.

Three weeks of Brentuximab, a week off, then three further weeks. That was the plan. After the first three weeks I was finally fever free. My heart rate was a charming 79 and I was starting to feel much better. Granted I still had prominent lymph nodes in my neck and groin, I was still experiencing night sweats, and my spleen was causing me grief, but overall I felt nearly well. My consultant allowed us an anniversary trip, which we’d kind of already partially booked. The trip took us to the northern Coromandel, completely off the grid. The plans were for walking, swimming (paddling for Liv), nature and books. Maybe even some beer. And no contact with the outer world. We were to forget our current worries.

My rigors started on the second day. The lymph nodes burst through later that evening.  You can ignore, or at least weakly justify, the changes for a couple of days, but once the rigors become regular and the fevers creep higher, well we knew, we both knew, what was going on. It was fortunate that we were completely alone, in our hired bach, sitting on the deck listening to the kiwi and the morepork chat to each other – the morepork always has the final say – as it gave us a peaceful setting to contemplate my fairly obvious relapse. I set myself to weeping. I was glad that we were off the grid. It is difficult to correspond with people when everything is getting worse and our future is becoming uncertain and bleak. Since November we have had three weeks, those first three weeks of Brentuximab, where we have definitively known what was going on. So if you’re wondering how I am, be rest assured that I am shit. Except, of course, for that one Thursday when I saw my consultant and I was well. There is not much point in asking how I am. It is strenuous and exhausting responding to multiple messages.

Ok, so it wasn't all doom and gloom

The day before we left my temperature shot up to 40°C. We made an obligatory call, which went unanswered, to my clinical nurse who is holidaying in the North of England. I hear it is charming there at this time of year. Really the phone call was so we could claim that we hadn’t broken all the rules. Only the remoteness, the untreated drinking water, the unpasteurised cheese… They were not overly impressed at the day ward when I admitted the 40°C fevers.

I have started Prednisone again. I pretty much begged them for it. It doesn’t seem as effective this time. There has been no frolicking, and although the rigors have gone, the fevers still remain. In my gut I had believed Brentuximab would work. But it didn't. It is another limbo period treatment wise. We don’t know what the next step is. No one does. Emails are being fired between here and Australia, opinions are being sought, but a decision is yet to be made. I now know that these limbo periods need to be covered by steroids because Liv’s body and mind and husband cannot deal with long frequent rigors. They are debilitating. And, during this current period of high grade fevers, Wellington decides to throw out a fortnight of scorching weather. But at least now I am now grateful for the wind.  

        

     

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.               

I have some news

Puponga, Golden Bay. The farthest north, the farthest west I can possibly get within the Tasman region of the South Island. From a bed, I lay looking out into the clear dusky sky, no cloud, no smog. Only the erratic unsettled movements through the native treetops contradict my perspective of a still and tranquil evening. The day has been good, great even, and although I feel tired now, it is more due to physical activity than any particular disease process. I have, of course, used the term ‘activity’ loosely as it was not the most active activity. Overweight old men stealing sideways glances at my audible breathlessness whilst resting (er, I mean, admiring the view) atop a small summit “She doesn’t look unfit” they’re thinking. I managed it though, the one kilometre walk over small summits, the clambering, sinking, falling, over, in, and around the giant sand dunes. At one point I began to read far too much into my own wildlife metaphor as I lay amongst the dunes watching the seal pups play in the rising tide, in the surging waves, in the small river feeding into the wild sea. There was, also, excitement when I realised my hair is now long enough to be wind swept, albeit requiring a Wharariki wind. As the afternoon went on and the gusts turned to gales, I managed the one kilometre walk back over small summits, again with sideways glances from overweight old men and, a new addition, concerned stares from international tourists, tourists who were promised an easy walk to see some beautiful dunes so why is this local girl with her wind swept hair audibly breathing so very hard? Hence now my physical exhaustion.

Did Gertrude Bell find sand walking quite this hard?

One pillar of wisdom.....

A little over a week ago I had a bronchoscopy. A camera is fed down through the airways, usually the nasal passage, into the depths of one's lungs. Whilst down there the team squirt in a bit of liquid, let it rattle around for a while, then aspirate it back up again in the hope that the fluid will bring a few respiratory cells along for the ride. These cells would then, again hopefully, culture some bugs and give me a diagnosis that isn’t lymphoma, a diagnosis more like Tb whose symptoms happen to mimic Hodgkin’s Lymphoma. I have spent the last two months wishing, actually hoping, I had Tb. The procedural idea is to administer IV anaesthetic, enabling the patient to experience a mild amnesia and ensuring they remain compliant with the clinician’s instructions throughout the thirty-minute bronchoscopy. I am unsure of what happened in my situation, whether the drugs took a little too long to kick in or if not quite enough was administered. I do, unfortunately, recall the procedure rather vividly. Oh, and no I was not compliant, although, I assure you, I had every intention of being so.

The consultant could not get the hook of the camera into my nasal passage, a ‘petite nose’ apparently, (I think she means ski-jump but I’ll accept the euphemism) and so the oral route was required. A rather large black tube was eased down my throat. I couldn’t control my coughing, which quite quickly converted to heaving. Occasionally I calmed myself with periods of nasal breathing; these periods never lasted more than five breathes and I must admit I was breathing rather rapidly. My coughing, heaving, nasal breathing routine proceeded for a half hour or so, looking up at the stark lights and black cylinders (I was calmer with my eyes open), listening to the doctors bark instructions “more fluid, more fluid, more fluid” – “Please no more fluid” I am thinking however it comes out a more muffled “mew err err cough cough cough aherr herr herr aherr herr”. Eventually, they aspirate the fluid from my lungs whilst verbally considering whether to biopsy one of my beautiful lung lesions. They can do that, you see, while they are down there. By now I have realised my ability to communicate using vocal tones is severely diminished and therefore I attempt a more telepathic approach; “No, no, no, no, please no, I will wait another month for diagnosis, two even, if it means ending this torture now”. The consultant is still audibly considering her decision with ‘umms’ and ‘ahhs’ but picks up my wicked brainwaves and opts for “No”. I am unsure what a sigh of relief sounds like with tubes in one's lungs but I feel that this is what I delivered. As punishment for my non-compliance, I was to cough up blood and the occasional clot for the next twenty-four hours. “Traumatic” they termed it, which, even for me, is a bit over-dramatic.

How are you going? Frustrated at my small talk? I have covered the weather, what I did last week; I wonder what else I can waffle on about before I actually have to give some substance to this post? A hometown friend of mine drew a slight smile from me when I saw her last; “Right, what is going on?” she asks, minimal pleasantries, direct and to the point. Perhaps that is what I must do here, plunge right on into it rather than attempting to give any flow to my writing. Two days after my experience with a bronchoscopy the histological results from my axillary nodes confirmed Hodgkin’s lymphoma. In hindsight, there was no need to go into my lungs. So now I am officially diagnosed with refractory Hodgkin’s lymphoma. In a lovely little laboratory paradox, once the lymph node biopsy revealed lymphoma the bone marrow trephine could also confirm it. The bone marrow morphology was slightly abnormal, not conclusive of Hodgkin’s, further investigation would be required if I did not have Hodgkin’s, but made perfect sense once Hodgkin’s was confirmed. Gotta love those scenarios. On the plus side, my haematology consultant has promised me a trip to the lab to examine the morphology myself and to have a sneaky peak at their brand new Sysmex analysers. I may, just may, take the opportunity to introduce myself to various laboratory staff, have a sly look at their laboratory procedures, who knows, if I continue to talk the talk I may be able to line up a job at the end of all this. Oh, the prospects! Possibly not with my recent ‘let’s get the haemoglobin level from a citrate sample’ suggestion, I am not sure that went down too well with the purists out there.

OK let us summarise that jumble: I now officially have refractory Hodgkin’s lymphoma, it is in my bone marrow, the haem team have allowed me a brief convalescence trip to Nelson/Golden Bay (they don’t actually know about the Golden Bay part, that is our little secret), I get to visit the haematology lab in Wellington to (perhaps) make some friends.

Where do I go from here? Treatment, obviously, needs to be discussed. What else? Statistics? Well, I think most of us don’t really find p-values overly exciting so perhaps statistics will be left for another post. I am sure I will, at a later point, get into the nitty-gritty of the treatment regime so for now, I shall give you the minimum required to be informative. The next step in the treatment chain is salvage chemotherapy followed by an autologous stem cell transplant. Although this sounds like something involving controversial ethics and an impromptu trip to India, it is nothing quite so exciting. The first treatment goal is to get rid of the lymphoma, which is where the chemotherapy comes in. They are going to give me regime called ICE. No that is not a Breaking Bad reference it is indeed my chemo regime: Ifosamide, Carboplatin, and Etoposide. I am sure in the coming months there will be various moans and groans about each of these drugs therefore, again, I shan’t delve into too much detail at present.

Three ICE cycles are planned with each cycle spanning three weeks. As ICE is administered over a seventy-two hour period, I shall be an inpatient for three days each cycle. The number of the day, by the way, is three. At some stage, after my final dose of ICE my own stem cells will be harvested from my blood and preserved before I get zapped for about a week with high dose chemotherapy. The haem team have never named this ‘high dose chemotherapy’ making it all the more ominous. For the record anybody who thinks they are escaping a scientific version of events is rather delusional. All that is to come, my friends, it is just not necessary for this particular post. After the ‘high dose chemotherapy’ (cue spooky music) they reinfuse my stem cells, which have been protected from the ‘high dose chemotherapy’ and I have three weeks or so whilst the transplant settles in where I am pretty much bedridden. Throughout both the ICE chemo and the high dose I am going to be reliant on blood transfusions, platelet transfusions, sodium infusions, magnesium infusions – pretty much everything. Anyone out there contemplating donating blood would get enthusiastic encouragement from me.

As with anything medical related, plans are likely to change. Scan results, the way my body reacts, even funding, all have the potential to alter plans. This is the plan for now. My 'holiday' in the Tasman region is nearly at an end and it will be unlikely that I can escape again this year. I will try, oh yes I will try, but at this stage, I am Wellington-based for the foreseeable future. The foreseeable future being, of course, three months. 

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.