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. 

Honest musings

What is this? Another blog post? See, I told you I would have a prompt update. And you all thought I was just saying that for the clicks. Nope, I meant what I said. Unfortunately, for both myself and Michael, I’ve had six or seven sleepless nights in a row. I think I have too many thoughts whizzing about my brain. Not concise thoughts, that would be more of a floating sensation, no, these thoughts are definite blurs. It has been a while since I wrote in this manner; simply writing to see what comes out, to see what needs to come out. So I sit here on the couch, under a blanket, with two litres of orange juice, a pot of coffee, and a whole lot of time. Let us see what happens.

You’ll have to excuse me if I become repetitive. This is not the slick Observer column I once envisioned in a quixotic dream. Rather, it has become the ramblings of a cynical invalid. I wish my dreams were still quixotic. Instead, they are nightmares involving blood results and aching ears. They are dreams that are all too close to reality. Many times throughout these compositions I have been cautious with my words. I have held my tongue, and in doing so, I have not been entirely honest. This post will be honest, as will those that follow. It is more than likely that it will be longwinded, for that is my manner, but I will, eventually, come to the truth. No more holding back to protect feelings. 

There is more to tell about June and July. I wrote about my longish stint in hospital. This was in part due to radiotherapy, but also because I was quite unwell. Poorly, as the Brits would say. I was again anaemic. My last transfusion had been in March so a sudden plunge in haemoglobin was a little odd. A registrar set about comforting me; yes it is possible to become anaemic when you have a severe infection. Look at your raised CRP, your fevers, your cough, your murky chest x-ray. And your LDH is normal. These all point towards bronchitis. But I am never convinced. I am like an obsessed conspiracy theorist; you can show me one hundred pieces of evidence to support the infection idea but I will still believe that I am relapsing.

There were other symptoms complicating the bronchitis diagnosis. Like my loss in appetite. Like dropping eight kilos in a month. Like this pain in my spleen. These don’t make a lot of sense. As with all conspiracy theorists I am never alone in my ideas. There will always be others out there to support my views. One such person was my consultant. And I wonder, if these obsessed conspiracy theorists I speak of, I wonder if they freak the fuck out when an expert agrees with their suspicions. I wonder if they half, maybe even three quarters, believe the theory but the remaining proportion is actually desperate to be proven wrong. No, no, no, Mr Expert, you’re meant to debunk me. Not agree. Please don’t agree. My consultant did agree with me. He ordered another CT scan. Ok, so maybe I am not quite so similar to a conspiracy theorist. I do appreciate strong scientific evidence.

I feel it appropriate to make some Atwood time leaps. I’ll be like Snowman Jimmy, except less of an asshole. I know how many of you get that joke. I've given that book to pretty much anyone who ever expressed a vague interest in speculative fiction and even to some who haven’t.  Anyway, back to time jumping. I had a CT scan back in May. I am aware that I have not published the results. In March, I was on my death bed. It is funny, in a dark, twisted, Bill Hicks sort of way, that each time I have been ‘on my death bed’ I have pulled back, and the next time is always ten times worse than the bed prior. March was ten times worse than December. So, when I say “In March, I was on my death bed” what I mean is “in March I was dying”. The next death bed will, no doubt, be worse. In March, I would have died without medical intervention, without blood transfusions, without my magic new drug. In March, in order to gather how badly I was dying, I had a CT scan. This has been used as the base scan. I guess if a scan ever gets worse than that then I am in a whole lot of trouble. I never read the report from the May scan, not until recently. The official line was that some masses had got bigger, whilst others had got smaller. At the time this was no surprise to me nor to Mike. I was quite aware of the bulging node in my neck and the four or so in my groin. I knew they had not been present in March. But I think of them as superficial nodes, nodes not likely to cause too much grief, just a little uncomfortable, and a little disconcerting for those looking at me. Is that a cretin, I imagine them asking.

As an inpatient in July, my consultant felt it was time to do another CT scan. The results were better than March. But they were not better than May. The results in July showed disease progression. My super new drug is not working. Or, rather, it is working, but it is only doing half the job. It is quite probably slowing progression, but it is not preventing progression. 

What is it like to be told you are terminal? Well, it was not unexpected news but it was undesired. I did weep. I did apologise to the doctors for weeping. I had hoped to take the news better than I did. I was told, by my consultant, that I was his favourite patient. I bet he says that to all the dying girls, a number which I hope is few, if not merely to flatter my ego. 

Wow, so the blurs continue to whizz around my brain, I’d like to make them more concise. I feel like I have so much to say, but I fail to make sense of it. I’ll start with logistics. I am continuing with my drug, the infusions are to be done in Wellington. They tried to transfer treatment to Nelson but it is impossible. So my fortnightly trips from Nelson to Wellington continue, with hospice care to be convened in Nelson. The drug is providing me with hope. Granted it is Obama style hope, but it is hope none the less.

That is a vague description of logistics. It turns out I am not in the mood to write of such things. It makes me agitated. I don’t know what you’re feeling right now. Most probably confusion. I have told very few of my updated situation. Initially I intended to keep it a secret. I feared people would treat me differently. I did not want that. I do not want that. But the more I thought about it, the more impractical secrecy appeared. Some of you may have noticed that my sister was married a couple of weeks back. The weather in Wellington is just beautiful in August. It makes total sense to hold a wedding then. And organise it in two weeks. Perfect sense. Some may have noticed that my other sister seems to be spending a bit of time in New Zealand, well, in the South Pacific at least. Yes, the New Zealand weather really is lovely in August. She's right to forfeit a European summer to experience squalls, southerlies, and hail storms. Ok, I’ll admit these events are suspicious. I would be suspicious. The news had to come out. I apologise to the many of you who are finding out via a public blogpost. It is an extremely difficult conversation to have and it doesn’t get any easier the more I do it. If anything it gets harder. I know most of you won’t know what to say. You may take some comfort in knowing that I don’t know what to say either. I guess there ought to be some sympathy, I mean, I have had to listen to the media bang on about Trump for like two years now and I will probably never see the bloody election result.

Since my July CT scan, I have read the report from May. It turns out that scan was more pessimistic than we had been led to believe. The May report suggests progressive disease, so really I have been terminal since then, albeit unknowingly. I would like to be able to say that official confirmation of my suspicions didn’t change anything. But if I said that, my nose would grow. I’ve had to think about what is important to me, what is important to Mike. I’ve had to deal with all those aspirations I never got around to starting, assuming I would have time to fulfil them later. Sometimes it is difficult, but most of the time I just feel numb, like it isn’t really happening. It is only when a fever kicks in, or a lymph node bulges, or pain manifests, or when I notice that the food I am eating has an expiry date longer than my life expectancy, it is only then that I remember what is going on. And I must confess that often, when this happens, I cry.  

I intend to continue this blog for as long as I can, however the tone may change. I recorded my thoughts throughout my last hospital visit, and I’ve long been jotting down my ideas on mortality, on dying, on everything really for quite a while now. Sometimes these thoughts get a bit dark. Here is a jot, a particularly dark one, which I wrote in June before I knew I was terminal. It goes a little something like this:

I think it is time to talk about dying. This is rather selfish of me, I know, but I feel by putting this down in writing you can make your own judgement as to whether you wish to engage or not. By engage I simply mean read. I understand that many do not wish to think, let alone speak, of death. Of late I have felt an urge to discuss it, but where I can legitimately do so is limited. So, after months of deliberation, I have opted for here. The whole point of this is not to mince my words. Here goes.

When reading about those with terminal conditions, I am always struck with how positive the individuals are. Wow, you’ve gone back to work and you swim 50 lengths even though you’re terminal? Phenomenal. ‘I just enjoy every day, one day at a time.’ Fan-fucking-tastic. I have read one, only one, which had a tinge of bitterness to it. A teenager. I feel he has every right to feel bitter. But nobody wants to read negativity. The punters want happy-go-lucky dying stories. I am not one of those. I am not bitter, but if I was to write a dying column, it would not involve working nor 50 lengths. Dying is painful. Right now it feels as though somebody is stabbing a sharp poker through my shoulder blade. Dying is exhausting. I didn’t make it out of bed yesterday. I went into dying with a positive attitude. Mike and I would trip around, see the things I hadn’t seen. We’d go snorkelling, watch a hundred sunsets, sip cocktails, eat local delicacies. But, right now, it seems that I will never be well enough to make that happen.  

A big part of palliative and hospice care is pain management. Somehow, I slipped through a palliative care gap and only met the team when I was officially terminal. This is not actually how palliative care works, at least not in Wellington. They like to meet you early, help manage your pain whilst you are still undergoing treatment, thus preventing events like June. I guess because I was coming and going so often I never got to meet them. I have met them now. I have a lovely palliative care nurse who, on our first meeting, asked what was going through our minds. “We want to runaway”, I replied. She was mortified “You want to run away from hospital?” No that wasn’t what I meant. Mike and I have a tendency to escape when things get a bit much. Take a little trip somewhere. Somewhere with no cell phone reception. Somewhere with no internet. Fortunately, that includes half of New Zealand. The plan is to spend one week in Nelson, then one week away, then repeat. But we cannot plan more than a week in advance because we never know how healthy I will be. Sometimes we spend both weeks away. Sometimes we attend a wedding. Sometimes we drink too many margaritas on a school night, then realise that we no longer have school nights, so drink too many more. Shhhh. Don’t tell the doctors that one. Sometimes, being terminal is repressive. Sometimes, it is ultimate freedom.

Now that I have made this announcement, we are escaping. Escaping to a place with no cell phone coverage and no internet. To a place with sunsets and cocktails but no local delicacies. It seems some delicacies are endangered creatures. But maybe, just maybe, I’ll get Mike to start a cult in my name. Something to remember me by.    

A card Mike gave me a few years back

My time as a laser kiwi

Let us talk about June. I know it is now August and June was a while back, but I feel events in June need to be mentioned. Mike and I moved into a cottage in The Wood. It was built in 1868 and, seeing as insulation didn’t reach mainstream New Zealand until the late 2000’s, it was a little chilly with June’s winter temperatures. Fortunately, a bit of furniture and global warming has made the little cottage quite comfortable in August. Screw the future generations right? Mike had returned to the office and we had our cat back. She even seemed to like me more. We were reintegrating into everyday life. Living the dream. All I had to do was keep house; do the dishes, maybe a load of laundry, cook dinner. There was one problem though, I couldn’t manage.

The usual complaints were present – spleen, fevers, fatigue – but also new ailments were arising. There was this cough. It started in the early morning and by midday I was trying my darndest to expel both lungs from my body. The effort was in vain. All I ever expelled was my stomach contents. Then there was this upper back pain. My shoulders had begun hurting a while ago, maybe January. It made sense; I was less than active, my posture has always been poor, and prednisone muscle disintegration was well under way. Of course I would have a sore back. Oh and my Hickman line, that must be contributing to my poor posture. Best have that removed. Physio will help. Get some exercise in. Strengthen those muscles. Keep doing those stretches. Surely stretching should ease some pain. But the pain was worse, not better. A trip to Wellington and some codeine. The pain worsened. It was a hot poker stabbing into both shoulders, slicing down my spine and my left arm. I couldn’t even make a coffee in the morning. Things were getting desperate. I was hitting the paracetamol hard. Despite antibiotics, the cough was still present and it jolly-well hurt to cough. I became almost bed-ridden. I say almost because occasionally I did manage to crawl downstairs and settle, with the cat, upon the couch. But I’d had enough. Everyday life sucked.

Wearing the same expression

I do try hard to leave the lovely Wellington haem team in peace but I found the situation distressing enough to contact them. I mean, I couldn’t even make a coffee. Dire, I tell you, dire. And with my rasping cough and charming wheeze, who wouldn’t be keen to see me? Wellington were certainly keen. After a quick chest x-ray and a sneaky blood transfusion I was admitted, with suspected bronchitis, and offered Tazocin for the next three to four days. Initially, when this adventure started around two years ago, I had no side effects from antibiotics. Now, well, let us just say they actively encourage bowel movements. This is a quite common side effect among patients. I have no idea why. Anyway, whilst I was admitted they decided to check out my back pain. There were no spinal abnormalities on the CT scan. Perhaps it was referred pain from my spleen. An MRI was scheduled, cancelled, rescheduled, re-cancelled, and finally performed. I’d had an MRI as a child but couldn’t remember much of it other than being allowed to listen to headphones, which at the time I thought was quite neat. I guess I was a lot smaller back then. The MRI scanner was long and narrow, much narrower than the PET scanner. I find small spaces comforting so it did not bother me much. I was more worried about how my back would cope laying still for an hour. The back was fine; I had enough morphine on board to numb any pain and create some rather disconcerting hallucinations. They were not fun hallucinations. They were shitty everyday things that I knew weren’t real. Like a nurse appearing at the foot of my bed, a nurse who I knew wasn’t real because they had the wrong uniform on. But illusionary nurses still seem to frighten me. Not fun. Oh and the headphones hadn’t changed since I was a kid. 

The MRI results were back before smoko. It was one of those ‘bad news is also good news’ moments. There were lymphomatous deposits (yup, still not quite sure what that means) in my spinal column, pressing on a few nerve roots. This is known to happen in Hodgkin's disease. The masses were in just the right spot to be deferring pain and numbness down my arm. There were also some more masses at the tail of my spine. My physio had asked me, way back in March when I first turned up on her doorstep, whether my pain could be due to cancerous masses. I assured her that couldn’t possibly be the case, I was scanned often and there had never been any evidence of masses. Well, she was right. But it was good news. Radiotherapy could ease the pain. Yus, no more exercises.

And so I got to experience radiotherapy. Don’t worry, physics is far from my favourite subject so there will be minimal science in this one. You’ll have to ask Mike for the technical details, the whole subject tends blows my mind into tiny pieces. From what I can gather, one x-ray beam runs from head to foot and the other is fired perpendicular to the body. Where the two beams meet is where the radiotherapy is targeted. The day before radiotherapy started I had another CT scan to ensure the x-ray beams were inline with my tumours. This is done down to the millimetre. Yup, they can actually move the bed one millimetre. In order to line you up each session they need to have, and remember, a reference point. An easy and permanent way to do that is with a small tattoo. I now have four. Mike was expecting crosshairs but really you cannot notice them. They are barely the size of a pinprick. But they make me feel badass all the same. I’ve wondered what happens if I require further radiotherapy; do they strike a cross through the old points or reuse them? Maybe I could bring a few designs in, really embrace the procedure.

Once I had my initiation tattoo, it was business time. To be honest, business just required me to lay still for half an hour whilst some pretty hi-tech contraptions whizzed about me. There were lasers, both red and green, and the lights were low; I expected the theme from Star Wars to begin. It didn’t. Instead Crowded House droned in the background. That was probably the worst part; Crowded House playing and being unable to move or block my ears. Honestly, there was nothing more to it. It looked spectacular but I felt nothing. I was even surprised when, a couple of hours after, I vomited violently upon myself. Nausea is one of the side effects, you see, but I had failed to remember that I’d even had radiotherapy. A week later when I couldn’t swallow, I finally believed that it had actually done something. Oesophagal tissue is quite sensitive to x-ray beams so my throat got angry. It was all I could do to finish my Fortisip. Through a straw. I must confess I was pretty cranky about this. I had finally developed an appetite and now I couldn’t eat. Oh the irony! Other than my inflamed throat (which lasted a week), fatigue, and nausea, there wasn’t too much to grizzle about. I’d even managed to charm the haem team enough to allow my release from hospital. Either charm, or they were desperate to get rid of me. I’d like to think it was the first. Fortunately, Hodgkin’s cells are sensitive to radiation, so my dose was low compared to most radiotherapy patients. I only required five days of treatment. Most people I’ve met have spent six weeks under the zapper. In comparison, my side effects were minimal.

So that was June and half of July. I know I have been tardy with this update and I apologise for this and the quality of the content. It is a little disjointed. Now that my back pain does not cause my legs to buckle or me to emit audible groans, there ought to be more frequent updates. The radiotherapy has worked, I am no longer on any painkillers, not even paracetamol. Maybe that is why GlaxoSmithKline’s share-price dropped in June. It was nothing to do with Brexit.      

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.

  

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.