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.               

Further non-updates

Firstly, I must issue a disclaimer; I do not feel like writing, I do not particularly want to write, I am therefore struggling to write and cannot promise any cohesiveness in what follows. Currently I am a bitter, angry individual whose only real desire is to get excessively drunk in the sun and mull over the world’s problems with the miniature New Zealand seagulls. Maybe I would even touch on my own problems. There are many barriers preventing me from accomplishing my desire; the anti-fun laws of New Zealand prevent public drinking, Mike would also disallow such activities, and, honestly, drinking two beers makes me feel utterly terrible. I no longer have that pleasure.

On Thursday I attempted this post for about the third time. Unfortunately, I spent all my energy suppressing an overwhelming urge to pick up the netbook I was using and, with one fluid motion, hurl it over the glass partition I sat behind, smugly watching the sluggish little beast fall four floors and smash upon the black marble foyer. Noise, destruction, silence. This would have been a rather dramatic action given I was once again situated in Te Papa, but I feel such an exploit would aptly demonstrate the frustration consuming me of late. Strangers would stare as I stand with a slightly maniacal grin on my face. I need a minor act of rebellion, it may distract me from the tedium that currently is my life.

As you may have gathered I am yet to start treatment. My excised lymph node provided no conclusions. It is with mixed feelings that I receive these results. No evidence of Hodgkin’s lymphoma (perfect lab speak), some reactive features, some scaring. On one hand it is great to hear that a node displaying disease in December no longer does, however, a negative result in one node does not rule out disease. We are in a situation where we actually require distinct evidence of lymphoma in order to continue, continue with anything. All this result actually does is send me further into the depths of denial.  

These results, or non-results, were delivered to us last Friday in a consultancy appointment. Of course there are further tests that can be performed to confirm relapse, or indeed other diseases. The appointment ended with an impromptu bone marrow biopsy/trephine. Surprise! We’re going to bore into your pelvis! In the NZ vs UK healthcare game NZ gained a point here by offering me anaesthetic gas, gas that I gleefully accepted. The procedure itself was tame in comparison to the one in December, although I did manage to incite a growl from the haematology registrar when I removed the gas to abuse the radio station for their terrible music selection. The gas seeps into the room you see, and then the doctors inhale it, and then they feel ‘light-headed’; not an ideal situation. But back to the music, honestly, this radio station makes Heart seem good. The bone marrow results are still pending.

To further complicate matters, I have not been well this past fortnight. Chills, fevers, sweats, fatigue, tachycardia, irritability (ok arguably not a symptom), raised inflammatory markers, raised neutrophils, no obvious sign of infection; head scratching all around. Is this all really a systemic infection? Could the positive PET scan, which was performed directly after my last ‘infection’ presentation, be a false positive? Apparently this is a possibility. Given it has been nearly six weeks since my last scan, another PET has been ordered. We all know how much I enjoy those, but at least it is something, just something, which may progress diagnosis. I presented in the day ward with pyrexic features about ten days ago, therefore the haem team have decided to wait a little before the scan; they do not want another false positive. This caution will, potentially, go unrewarded as I had a lovely little fever last night implying my reactive state has not fully resolved. Nights are becoming exhausting.

This break in testing allowed us a small window to discuss fertility options with experts. The appointment was Tuesday. Our decision was required Friday. Prior to my initial chemotherapy I was too ill to delay any treatment with such discussions. ABVD does not contain alkylating agents so my natural fertility was likely to be preserved. After my July PET scan I was informed that the next treatment regime will leave me infertile and I had little time to discuss such matters. As it turns out I have not yet turned into a pumpkin although perhaps my carriage has. (Yes, Cinderella is my current literary level.) Upon hearing our fertility options, the procedure, the delays it would cause to further answers, the uniqueness of my case (I would quite like to be utterly normal right now), the chances of success; Mike and I were left with a rather hefty matter to discuss. We responded the way all couples in a healthy long-term relationship would; by postponing the discussion. Repeatedly. I spent the days mulling over the issue, desperate for somebody else to make the decision for me. The day ward registrar (whom I quite like) was having none of this delegation. This was our decision to make, alone. It is difficult to go from having all natural options, to no natural options, to some artificial options, all within a month and without the concrete knowledge that I am actually going to receive further treatment. Small things like twelve-year-old boys spitting on us whilst we were mid discussion certainly did not help the ‘pro’ column. We did make our decision in time. Fifty percent of cancer patients opt for fertility preservation prior to cancer treatment. Just a fun fact.   

    

We remain in our transitory state, our state of homelessness, of unemployment, of bitter Wellington wind. I have not gained medical clearance to fly so have only been home (Nelson) once since our NZ arrival. We remain in our cancer accommodation with fellow transient patients all keen to talk of their lives and, sometimes, their situations. In between my naps and appointments I slink around the communal areas reading the various plaques that remind me who has donated what. I am unsure whether to feel grateful or guilty for such generosity.

I guess the important thing to remember is that refractory Hodgkin’s lymphoma is still the most logical explanation. In my last scan I had lesions on my lung, lesions that look rather like Hodgkin’s lymphoma. I imagine that when the PET scan goes ahead they will look for a larger node to remove. This will probably lead to abdominal surgery. There will not be any definitive answers for a few weeks. I do not expect a negative PET scan. The delays to treatment have not occurred without our consent. I have not yet mentioned the next round of chemotherapy, but just know that the side effects, both short and long-term, are severe. We need to be certain before starting the next phase.

   

And now for some exhaustion

I have become one of those individuals who requires the little green man in order to cross the road. I depend on him. I am the woman standing at a set of traffic lights on an empty suburban four way intersection, eyes fixed intensely, focusing on the little red man, waiting for him to stride off in little green man fashion thus making my road crossing decision for me. Then I realise I have never pressed the button; the little red man is permanently stationary. And so I push the button, slump against the traffic light pole for support and wait some more. Should the intersection be uncontrolled a detailed six step plan of attack is required before I can even approach the curb. What is the intersection type? T, ok. Which direction is the initial traffic coming from? From the right, that is normal, good. Can I see past that parked white van? Sigh, those white vans are always too wide, and they always seem to be double parked, and they drive just far too quickly; I wonder what is inside those white vans…… HEY! This is no time for mind deviation. Back to the task at hand young lady. Now, I’ll ask again, can you see past that parked white van? Yes. Good. Is there a chance of any traffic coming from the T? Not really, the road is almost overrun with rolling dust balls. Alright then, look right, is there any traffic? No. Ok, look left, is there any traffic? No. OK, look right again, remember how we went over this at primary school? Little field trips to practice crossing the road? So, look right again, take a step to the curb, off the curb, scanning left and right as you cross, in case you got something wrong. Phew, centre island. Now begin again, only left, right, left this time. Things get a little more complicated, a little more panicked, if there happens to be traffic. Don't worry, I am not driving.

It was not until I was slaughtered by indefatigable exhaustion that I realised quite how many subconscious decisions I make in a day. I have never before been so grateful for little green crossing men. I have never before been emotionally distressed at the lack of little green crossing women. I know I have referred to fatigue in the past. I was wrong. Compared to what I am feeling now I was hyperactive before. I have a permanent prostration slap across my face; a burning red strip running along my cheekbones, ashen rings arching upwards towards my bloodshot eyes. My own little facial scrub fire; the mark of irrepressible tiredness. I went to bed on Saturday night, around nine pm. I did not really rise until six am Monday morning; my rest occasionally interrupted for feeding. It is not only my body but my mind also. I was lying in bed Sunday, distraught, because I could not focus on any books, any articles, any words. It is a dark day when I cannot read. It did not even cross my mind to use this novel invention called TV. I am not sure if you have heard of it. Laying around, trying to find a way to pass the time, and I did not even think of TV. That is how tired my mind is. Presently, I cannot cope with modern day branding, advertising or newspapers. Any changes in font, incorrect or unexpected capitalisations, erratic bolded words, underlined sentences, images and colours thrown in for good measure; my brain freezes then shatters. I cannot read this material. It is like an optical sensory overload, my cerebral lobes cannot convert the data from my eyes into logical thought. If the start of each word is capitalised and there is a picture nearby, my brain will be unable to decide which direction the text runs in. I start to read things downwards, or miss out words, or infer meanings because of the pictures, but the interpretations are distorted; jumbled; incorrect. I finally understand why tabloid newspapers adopt this method of 'reporting'.

I am acutely aware that the ABVD chemotherapy regime is far from the most potent. Granted the doses are more frequent and longer than other regimes, but the side effects have nothing on say a breast cancer regime. Three months ago I started writing of my fatigue. That youthful, inexperienced, past Liv had no idea. And the condition of others will be more severe; that poor cancer patient who has small children, say. How do I describe my current level of enervation if, in two weeks, the level will again plunge? The worst I feel is only a perception, not a reality. The truth is I can always feel much worse. Others are feeling much worse. This sounds rather doom and gloom but it is not really the case. The contrast on how I felt two weeks ago and how I feel now is blatant. I imagine there is a high possibility that my condition could further deteriorate significantly next fortnight. Therefore I should enjoy the now, in case of steeper decline. This is an easier attitude to adopt with the (unlikely) prospect of further chemo. Whatever I am feeling now will not cast a shadow on what is (unlikely) to come. For someone else that unlikely has happened. I know this. I know am lucky. I am not trying to sympathise with myself here, purely document my persisting degradation. 

I believe it will surprise no one to learn that work has beaten me. Three weeks from the finish line and I have pulled up lame. Lamer than a photo slide evening of Uncle Bob’s 1967 holiday to Twizel. A few weeks back, when I first started contemplating returning to sick leave, I was disappointed in myself; stubbornly persisting with work each day. Currently, I am just too tired to care. Here are the facts: Liv, you cannot continue to work. Take a big gulp of your pride, the little you have after that haemorrhoids post, and move on. Plus, we do not want your sexy bald patches causing a distraction in the mixed gender laboratory now do we? It is the mental exhaustion that has sealed my fate. The physical exhaustion I can handle, with a many complaints of course, but mentally if I cannot cross the road without electronic aid, well, I am not fit for work. Plus, in my current emotional state, I will definitely cry if criticised.  

I shall cease my fatigue complaints for now and describe some physical ailments. Yay for you. Ever since my 0.2 neutrophil scare I have been prescribed regular G-CSF injections; five days after each chemo for three concurrent days. I confess that I find the number three arbitrary. Quite often three turns into two. It is difficult when I can feel every bone in my body, even bones I swear are not large enough to contain the marrow required for leucopoiesis, to again inject myself on the third day. I can close my eyes and picture my skull, its osteo outline a map of bone pain. Even my teeth ache, which is either referred pain or imaginary, certainly not scientific. The bones in my ankles, my fingers, my wrist; all are doing their part to keep my immune response intact. My ribs resonate pain like a musical scale; deep persisting aches in the bottom gradually moving with rib to small high pitched stabs at the top.  My spleen is working hard once again. Honestly when all this is over I will nominate my spleen as the union rep for my body. “Look, look, look at what I am doing here! Hey, pay attention! All your blood cells are passing through me regularly. That is only some of what I am doing, thanklessly, and without pay.” I have been doing quite a bit of blood film morphology at work of late, a physically sedentary task so it fits in with my capabilities. Plus I get a little excited over morphology, intermittently distracting my male colleagues. I have found that sometimes I suffer sympathetic spleen pain; in a CLL patient for example. Occasionally my spleen mourns a fellow comrade with a little kick of agony if I chance upon a Howell-Jolly body in a hyposplenic blood picture. I myself display the same oversensitive attributes as my spleen, so I can sympathise, but after seven months of unrelenting reminders I am ready to part with this mighty little organ. Hopefully little organ.

And that is me for now. It hurts to breathe, but I think the sharp pang on inhalation is muscular. Three months of awkwardly sleeping on my PICC line arm has contributed to some wicked muscle changes, and I don’t have the strength for pectoral exercises. Although I ought to find it because I have heard that failing to breathe can be fatal. I have had a gum infection for seven weeks now. It is superficial, so no chance of sepsis, but unmovable and uncomfortable. Tongue ulcers make eating a bit of a drag, my taste buds are erratic and confusing. I am rehashing multi-syllabic words incorrectly; a fine display of my mental capacity. I am well aware that the quality of my writing has languished. Significantly. I am sorry about that. I am over this chemo business.

Happy Birthday to Mike

I am trying something new here, actually a few new things. Today is my husband’s birthday and as a super special treat, I am letting him take me to chemo and will earnestly attempt to keep all stomach contents either soundly in my digestive system or, at the very least, in the toilet bowl. No sinks today. For Mike, it must be the most disappointing birthday of his life. There is nothing I can give to him, say to him or write to him, that aptly expresses my gratitude and indeed reliance on him over the past six months. He has cared for me, tidied for me, tolerated my volatile moods and all I can give to him in return is a card with some excessively scrutinised yet still inarticulate words and this rather public outcry of affection. Happy birthday sweet. I am sorry.

This is my first pre-day-of-chemo post. I already feel nauseous and am disappointed because I know the queasiness is all in my head. There is no biological reason to feel unwell, it is purely anxiety. Which is odd in itself as by now I know the drill. I guess there is a little nervousness as to how my body will respond; it does seem to change with each session. I desperately do not wish a re-enactment of my previous session, however theatrical it may have been. So here I sit, a tap tap tapping away at the keyboard, hoping that my thoughts can successfully be transformed into words. I feel I am letting my little black notebook down; I am typing this out directly (thus it is missing an important editorial stage; forgive me) so my little black notebook misses out on my brain working this particular day.

In previous posts I have proclaimed my physical woes in the hope that I will keep the complaining to a minimum when or if I happen to speak or write to you. This I think, but please correct me if I am wrong, is having a small degree of success. However, that little bastard painter with his black paintbrush and his daubing of thoughts has managed to lodge himself firmly back into my psyche. I may not be complaining about my spleen in public, but not much else I say is very positive. The bitter old man rants spurt from my mouth before I realise what is happening. I have morphed into both Statler and Waldorf; acrimonious, horrible, nearly nasty pensioners in the body of a twenty nine year old woman. Amusing to watch if one is a fly on the wall, but for those actually living amongst these tactless tirades, well it is highly unpleasant. I am finding it highly unpleasant. I catch myself mid-rant thinking “Liv, have you said anything decent all day? You are really pissing me off!” Somebody has created a near exact duplicate of me; it looks like Liv, sounds like Liv, dresses like Liv, but the duplicate is a total asshole. Lines intended as jokes are spat out in spiteful tones, words upon words, ill-thought, if thought at all. An exasperated internal voice is screaming stop, please, just stop talking. But no. No, this duplicate Liv, with her intolerance and her perceived self-righteousness prances around spouting utter bullshit in a horrid splenetic tone. The worst of it is I can see others are, if not listening, at least aware of these stupid words, words that should be meaningless but, unfortunately, are the sort that one never forgets. And it isn’t anger or repulsion that I see in the eyes of my sufferers, it is pity. If I happen to have enough social awareness to direct my gaze in the direction of the particular victim of the moment, I am greeted with large unblinking eyes of the deepest pity. What has become of you, these eyes are asking, how will you recover? Not recover from the cancer, but recover from the bitterness that has lodged itself firmly in my brain, its own little tumour metastasising throughout my body.

So how do I deal with this? Illicit drugs maybe? I can’t exactly write post after post about my petty never-ending frustrations with the human race. I would require, at a bare minimum, a nom de plume if I were to do such a thing. It obviously requires a degree of self-awareness and energy to filter internal thoughts prior to verbalisation, and I am lacking both aspects at present. I need thought dialysis, although I guess that is essentially the role of the media these days. It is, again, with enormous frustration that I admit this rather large fault in my current personality. I don’t like it, I want it to stop. What I am trying to do here, I think, is apologise for my past actions and to let you all know that I am trying to rectify the situation. Hopefully, the outbursts of UKIP like hatred will soon cease, and I may be a moderately tolerable person to be around.  

For now I will use biblical inspiration and, with the strength of a unicorn (Numbers 23:22), prepare myself for the upstairs bus ride with the weekday Brighton eccentrics, in order to endure my next course of cytotoxins. If I am bitter now, imagine what poor Mike will be dealing with nine hours from now.   

Chemo kicks my ass...... again.

Oh for retribution! All it took was a mildly (I’m flattering myself) conceited blog post for the powers that be in chemo land, who seem to take great offence in such matters, to send me a dose that knocked me to my knees. I am far from my best as I write this now. These words are effectively my brain splattered on a page, but my brain is mushy and seems to be lacking in all filtering capabilities today. I apologise if what follows amounts to utter gibberish. Given my recent reading material, I also run the risk of breaking into verse. Again, I apologise if this so happens to be the case. A poet I am not. The musically inclined among you may wish to put a little tune behind it. Chemo-brain Liv; the next Tommy Ill. World famous in Wellington.

I will write, right here, a particular thought that went through my mind, this time two days ago. That thought was “Holy Monkey Jesus, what the hell is happening?!” Quite a blasphemous thought, I know, but I am sure any devouts out there will forgive. That is what Jesus would do.

Have the NHS banned selfie sticks in yet? 

The lead up to the chemo session was far from ideal; disturbed slumber a night or two or three prior, and a spontaneous decision to walk to the hospital in the midday Brighton sun. A spontaneous walk that left me embarrassingly breathless. I slumped into my oversized pink chemo chair exhausted. The session itself was uneventful. I didn’t want to be there, but then I never do. An obligatory chunder halfway through made me feel right at ease. I always want to get home as quickly as possible, this time that desire was super enhanced. But the session took four hours, for no reason I can really put my finger on. At some point during the chemo, I started feeling cold. This does tend to happen; the chemo is kept at room temperature, 10°C or so cooler than my body, so my chemo arm gets a little cold and a little puffy. But this, this was entire body goosebumps cold. As we left the day unit, the gentle breeze channeling between the nine storey hospital buildings propelled me into uncontrollable shivering with intermittent bouts of yawning. Halfway through our upstairs bus journey home, the chattering tremors were nearing convulsions. Mike wrapped a scarf around me. I caught a glimpse of my reflection as the bus passed a black building. My lips chapped and white; my face a bizarre mix - tanned yet grey; my hair dishevelled, the result of my constant urge to run my hands through it and watch the thick strands float to the floor. Our stop arrived and I shakily made my way off the bus, tripping over a ruck sack somebody had generously positioned at the bottom of the stairs. I may have tripped even if I’d had my regular Oscar Wilde wit about me. This particular Tuesday I had no chance of maintaining my balance.

Once home I was under the covers, woollen hat, dressing gown, blanket, two pairs of socks and a wheat bag all in tow. I still couldn’t feel my fingers; should I try some gloves too? My teeth were a chat, chat, chattering, occasionally interrupted by giant animal yawns. A bath! A bath will warm me up. My PICC line cannot be submerged but the rest of my body can, so I lie with my arm in the air like a faulty periscope and my face peering out through the bubbles. I am a new type of camouflaged bubble submarine, although not a very good one as I am still shivering and chattering like an addict in withdrawals. Eventually I decide the bubble bath will also be a failure. I emerge, trembling, with an urgent desire vomit. Is anywhere in reach? The sink! The sink will do, Mike rushes in; “The toilet you fool!” Too late, the sink is in use, when I catch a break I’ll turn to the loo. And when I turn I expel my guts in a way I haven’t for a while, some may say Dundas Street keg party style.

Finally the vomiting ceases. I crawl back into bed, still shivering and wearing only a towel. Totally attractive. I clamber into some pyjamas; they could be on inside out and backwards for all I am aware, and to be honest I really don’t care. Back under the duvet I dive. Paracetamol and anti-nauseas are greedily consumed. Better late than never. Toes are tingling to my knees; my fingers decide to join the fun, then my lips, then my tongue. The dacarbazine pain is back again, although not as severe, it is still discomforting. I lay on my side, emitting moans and the occasional blasphemous oath, much like the one I have already mentioned.

And then things get dark. This image of a pathetic ball of self-pity I am trying to conjure up for you, it was just a phase, but at the time it was difficult to believe such a statement. Since my diagnosis my dreams, or more my nightmares, have changed substantially in content. Maybe I should write a letter to the broadcasters in this head of mine to complain. No longer do my scary dreams entail chasing and killing and international crazy men of mystery, no, my nightmares, or nightmare to be accurate, are (is?) almost exclusively about me losing my wedding rings. I wake regularly to check they are still on my ring finger. Some nights I tape them up so they cannot move, which is poor exposure therapy I know. I wonder if death no longer scares me as much as it used to, and if maybe my biggest fear is losing or breaking the relationships with those near to me. Especially with Mike, who is my everything. Maybe I, as always, am reading far too much into it all. Anyway, this is a bit of a preamble into what I was thinking as I was laying under the covers with my wheat bag, moaning and cursing. I then understood why people die. Not like they choose to die so to speak, but maybe why they surrender to their body. That particular point in time was the worst I had physically felt in my entire life, and the thought that this feeling could be more than short lived did make me wish for death then and there, yet I was always safe in the knowledge that the feeling would pass, and I would feel better at morning’s break, but at the time morning seemed like a distant unfocused spot on the horizon. The sun hadn't even set yet.

Eventually the paracetamol kicked in and the shivers ceased. My temperature crept higher and higher until I finally resigned myself to the knowledge that moving was necessary and, using my less than precise thermometer, measured my temperature at a warmish 39.2°C. Out from the covers I slide, now in an attempt to cool off. Antihistamine is consumed to address the tingles and hopefully induce some sleep. Sleep did eventually prevail. Mike is also feeling a little under the weather; the bedroom in the morning was literally hot and sweaty, but not in a Lady Chatterley way. And when morning did come, the feeling of doom had passed, and it was merely fatigue, a little pain and a splash of nausea that remained.

So today. Thursday. I had, collectively, about two hours sleep last night. There were restless legs, festering rage, overwhelming tears, but very little sleep. The coffee I poured from the percolator this morning ran clear, apparently putting coffee grounds into the percolator is a useful thing to do. Solid evidence for my desperate need of caffeine. I did make it to work, shrouded in fatigue and negativity, and thank the colleagues who both tolerated my crankiness and lifted me out of my hole. My next posts and sessions, I have now learnt, I shan’t be taken so arrogantly.

I am not sure where I am going with this one

Many times this week I have attempted to write a post; started it with a few weak sentences, stared blankly at the screen, glanced around the room, back down to the keyboard, typed another feeble sentence, gnawed on my thumb nail for a bit, retrieved a beer from the fridge, thought better of it, returned the beer to the fridge, readopted my dazed and confused expression, stuck out my bottom lip, let my fingers slide across the guide bumps on the keyboard lightly tapping the keys without actually committing to a letter selection, changed music playlists, then gave up.

Even as I type now, I am distracted. It seems I reached a pivotal moment with the last post, a season finale if you will. How do I follow that up? Where do I go from here? Do you wish to continue hearing my vile self-pitying tripe? It was not only a milestone entry, it was a major turning point for me, and for Mike. I should be more excited about it than I am. I am aware of my feeling of indifference, and as a result, am disappointed in myself. The savage whips himself again. The rational, sane Liv, you know the one none of you have ever met, is aware why this is happening. Prior to the scan results I had this background knowledge that no matter how bad I felt there was the potential that everything could get much worse. This, in a way, was a comfort. I believe I had set the two month mark as a sort of pseudo summit, and once I had reached the top I realised there was another peak, previously obscured, only now visible. I don’t like ascents, although to be fair I don’t really care for descents either; so the prospect of this new climb made me exceptionally cranky. And then a little angry. And then a lot angry. Using the word ‘prospect’ implies two falsities. Firstly it suggests that I have a choice in undertaking the next part, which I do not, and secondly it infers I was unaware of the ‘hidden peak’, which again I was not. My poor reaction to the good news makes me wonder how negatively I would have received the bad news. At the time I believed I was mentally prepared, however with the benefit of hindsight, I seriously doubt I was. This is a somewhat irrelevant thought, but never-the-less it occasionally plagues my brain, usually around 3 a.m. in the morning.

Apologies for the exceptionally overused analogy. I am aware you are probably thinking ‘a mountain climbing simile? Really? Far from your best work I must say.’ Well you’re correct. Very unimaginative. I have utilised it in an attempt to explain how I felt that first week of my silence. The analogy was longer; I severely edited it so be grateful. What I am trying to convey is that emotionally I was in a bad place. Physically I was not much better. The two tend to go hand in hand. The chemo side effects that week were particularly severe. There were some positives, as this time the drugs were administered via my new fandangle appendage (i.e. a pipe sticking out of my arm), the dacarbazine only mildly hurt. The pain was so slight that I am only mentioning it here for interest’s sake not as a complaint; it hurt a little which I found interesting. It doesn’t make much sense for the pain to exist at all, certainly not in the area it was located, which was on my inner side of my elbow joint, below the drug administration point. Thankfully, it did not hurt my heart. Given that my PICC line ends just above the vena cava, I thought heart pain may have been a possibility. Happily, you no longer have to bear the burden of listening to my constant whining about my arm ache. I wish I could say the same about my spleen, but unfortunately it is still reminding me of its existence.

Whilst undertaking my PICC line research, I read a couple of posts from HL patients. The general consensus was that the third chemo cycle sucks more than a Rob Schneider film. I am inclined to agree. The fatigue was inexplicable and the nausea escalated from an initial sensation to many, many, physical actions. Along with the physical dilapidation, the mind was slowly sinking into desolation deep enough to warrant an inclusion in Dante’s Inferno. I then felt guilty about my own defeatism. These three process were combining to form a rather vicious feedback cycle which, much like my mutated B cell MDM2/P53 cycle, was struggling to arrest (yes I am a nerd). That was a week ago. It was a dangerous time for writing. At one point, in a desperate effort to feel normal, I attempted mascara. This was a mistake. The combination of my pallor, my rosy red nose and my eyelashes, which have sufficiently thinned to allow clumping of an epic scale, lead me to resemble a psychopathic clown rather than the intended 21^st century woman. Of course my eyebrows have barely been affected by the chemotherapy, so I believe I was also rocking a Bert style mono-brow. I am nothing but style and class.

You may be pleased to know that although I fell rather hard after my last chemo, I actually bounced back with equal vigour. This prior week has been extremely successful in terms of my physical health, which in turn helps my mental wellbeing. I may have even busted out an enthusiastic but arrhythmic white girl boogie at one point. I am unsure if this good health is because my body is beginning to familiarise itself with the chemotherapy regime, or whether the decline of my underlying disease is leading to an increasingly healthy base line. It is quite possible that a couple of quiet weekends followed up with remarkably laidback week has led to my generally healthy mood. But that option is no fun. I would appreciate it if you would all join me in striking that last reasoning from the list. I will come up with valid justifications for this action at a later date. I am rather proud of my bone marrow as it seems to have adapted to the constant bombardment and kicks in sufficiently post chemo; I haven’t been required to inject myself for the last month. This most certainly has added to my good mood. I know when my marrow is working, because I occasionally feel it in my sternum and femur. It is that proud sort of pain that one achieves after a successful gym workout. This is a far more agreeable solution than GCSF. So keep it up not-so-little bone marrow. You are doing a super job.  

It seems I need a distinctly set level of despair in order to trigger my creative ambition. This past fortnight I have either felt too well, or have been completely inconsolable. I need a little angst to keep things interesting. Nobody likes an over-animated bright eyes and bushy tails attitude. It makes us reach for a shotgun. It makes me, a firearm despising left wing vegetarian who loathes conflict, reach for a shotgun. Anyone who has watched Critter Christmas would think twice about bright eyes and bushy tails. Today, sufficient angst has been supplied; I have chemo tomorrow and I am throwing a minor Warren Gatland strop about it - scrunching up my mouth, dropping my mono-brow and accentuating my forehead creases. Sufficient optimism has been supplied by the good behaviour of my body. Only my spleen is causing me discomfort, and it is merely discomfort. Although the charcoal rings beneath my eyes are ever prominent - a reminder of my persistent inability to sleep. I shall have to avoid the temptation to watch a particular cricket match tonight; an all-nighter prior to chemotherapy is probably not the wisest move. But then again if I can’t sleep….

    

To ABVD or not to ABVD?

Apologies, dear and loyal readers, for the delay in this post. I would like to think the delay was due to grand penmanship, developing prolonged suspense, however, realistically, the week prior has been frantic, further adding to my inexhaustible fatigue.  How are you feeling Liv? Tired. Exceptionally tired. This, in essence, means pure laziness on my behalf! So hence this rambling and ill authored apology. Since Monday, the day of reckoning so to speak, I have had my next dose of chemo further adding to my enervation, but I will address all that in another, hopefully imminent, post.  

Monday; 2pm haematology appointment with a jet lagged husband in tow. We had made a list of questions and checked it twice, had brief discussions on all the possible outcomes, crammed research on the various treatment options and, independently, had come to the same conclusion. Which is a nice feeling really, to know that you and your husband are on the same page. There are a few things I wish to address in an attempt to allow you all the opportunity to get inside my head a bit prior to me divulging the outcome of the meeting. I will apologise in advance for any content repetition from previous posts. Essentially, my brain for the last eight weeks has been repeating the same bloody thoughts and overanalyses, so I feel you should share in some small amount of that particular suffering. A further gift to you.

As you are probably all aware and are incredibly sick of being told, I’ve been diagnosed with advanced stage IV nodular sclerosis Hodgkin’s Lymphoma, and the majority of the negative prognostic features associated with the disease. What this basically means, is the lymphoma was in my nodes above and below my diaphragm, in my spleen, in my lungs, in my bowel and potentially in my liver. It was also advancing into my marrow. That sums up the stage four aspect; the classification would have been stage three had no other organs been involved, and stage two if the nodes effected were only those above my diaphragm. The ‘advanced’ aspect is due to the symptoms displayed, or ‘prognostic features’, before treatment started; drenching night sweats, weight loss, fatigue, spontaneous fever, haemoglobin below 100 g/L, lymphocytes below 10% of total my white cells, white cell count above 15 x 10^9/L  and an ESR greater than 100 mm/hr. In fact, the only features I had working in my favour were my age, I am under 45 years, and that I am a female. Oh and the nodular sclerosis subtype was also fortunate. I am unsure what my albumin was, but given they initially suspected cholecystitis, I suspect it was raised. What all this means is that the lovely little five year remission rate of 90% I was informing everyone of, was actually reduced to around 60%. If my two month PET scan was positive, then the remission rate after five years drops to around 28%. Hence, Mike and I both independently agreed that if I was indeed PET positive, we would change treatment regime from ABVD to escalated BEACOPP.  We were aware of all this from the beginning of my diagnosis, so it has been playing on our minds, and my clinician’s mind, quite a bit over the past three months.

There has been an abundance of recent research in the last few years in relation to the treatment of Hodgkin’s Lymphoma, and opinion is divided as to which treatment regime should be adopted. If I had been diagnosed in Germany, the USA or even parts of London, I would have given eBEACOPP from the word go. The reason I was not is that eBEACOPP is far more cytotoxic than ABVD; increased bone marrow suppression, increased nausea, increased fatigue, increased chance of infertility and, most alarmingly for me personally, a vastly increased chance of developing another cancer in the years to come; disturbingly acute myeloid leukaemia was on this list although, granted, evidence suggests there is only a 1% chance of this, but I was not overly happy to see that little nasty there. Another concerning aspect of eBEACOPP is, given it is a pretty new treatment regime, there is not a lot of data in regards to long term side effects. This is ultimately an exceptionally selfish concern. Someone needs to be part of that statistical group, why shouldn’t it be me? I do apologise, once again, for feeling that way. I had decided I would be adopting eBEACOPP should I need to, so I feel that although I had that selfish concern, I was willing to put it aside. It merely occurred in my head. Now I have passed the thought on to you. Judge me as you see fit.

Have you had enough of this preamble? I think you all have the general gist in regards to the state of my anxiety. Should I progress onto the actual guts of the appointment? I do hope that those of you uninterested I the scientific and medical aspects have simply skipped to this paragraph. I do confess the previous paragraphs read somewhat like a reflected learning piece; CPD points anyone? Well just to further the scientific parts, I do have to correct something I wrote in my previous post. I reported that in the PET scan therapidly dividing cells were red and angry. This is not the case. They show up white. The non-cancerous cells are still dull and grey, so those of you supporting me in the wish to resemble a New Zealand First supporter in my second PET scan can take heed that your wishes were still correctly directed.

Ok, enough of this! The appointment was scheduled for 2pm, as I have mentioned. It was held in the renal ward (clearly the NHS is adequately funded) so Mike and I were waiting amongst those about to receive dialysis. We were still talking about worse case scenarios and all that jazz when my Macmillan lymphoma nurse called me through. In my haste, I dropped my winter coat on the floor, then my gloves, then my hat. I have always been known for my super-cool qualities and calm head under pressure. It says so on my CV so it must be true. Once I managed to salvage my wardrobe from the floor, we toddled on through to see my consultant. On Monday mornings there are haematology meetings for all the clinicians along the South Coast discussing results and cases. This is fantastic; it means if you happen to see a different consultant they are all clued up on your case, and it means there is extensive collaboration in regards to treatment options. As far as I am aware, my PET scan results came through Monday morning, so my consultant had only just discussed them at the meeting. She could barely contain her excitement. In fact, I would say that she didn’t contain it at all. I hadn’t even taken my seat before she told me she had fantastic news, beaming from ear to ear, informing me that I was PET negative. We got to have a look at the first and second PET scans side by side. My spleen was the best example. On the first scan it mirrored a BNP supporter – you know white, large, angry and causing a lot of pain. On the seconded scan it was a lovely conforming grey. No more splenic involvement. Why does it still hurt then? Well it could be that I have falsely accused it as the root of all of my discomfort (much like a BNP member does to the rest of society) or the nerve endings are still aggravated so therefore it is kind of a referred pain. We don’t know yet. What I do know is that it still hurts, as does my upper right side, however my gall bladder pain has subsided, a fact I had mentioned to Mike prior to finding out my results. So it isn’t all in my head.

What does all this mean? Well it means I still have four months of ABVD chemo left, but that my chance of remission at the end of the treatment is now very high. It also means the chance of me being clear for the next five years is very high. This is all good news. How do I feel about it all? Well, trick question, I feel exceptionally tired. Sorry, bad joke. No, I don’t really know how I feel. I had so mentally prepared myself for bad news that the so called good news has not really sunk in. I still have four months of fatigue, nausea, hair loss, pain and general crappiness to go, and I am not really looking forward to it. But the option of not having those four months was never there, so I do not know why I am feeling sorry for myself. A number of people have said ‘well done!’ I find this an interesting turn of phrase. I haven’t done anything. I think it became apparent when I started to refer to my body in the third person that I had lost all control over it. Of course I never had control. If I had, I would not have got cancer in the first place, I would never have caught a cold in my entire life, I would have never suffered through chicken pox and I would be able to dunk a basketball despite my 5’6” stature. I have done nothing to deserve commendation. All I have done is sit around literally pulling my hair out and typing a whining blog about how terrible I feel. Nothing praiseworthy in that!  How do I feel? I cannot really tell you. I still cannot plan my thirtieth birthday merriments despite the high odds that I will be in remission. I still cannot plan Christmas.  I think all the positive thoughts and celebrations will kick in around the 30^th of June, when the finalities of the disease are apparent, and the bloody chemo is finished. So do not fear! You still have four months of whining to look forward to. But it is good news all round, and I did smile, and Mike and I did share an inappropriate celebratory peck in the foyer in front of all the poor bastards waiting on their regular life dependent dialysis. 

Two chemo cycles down, four to go

Two cycles completed, yet four sessions done; four cycles to go yet eight sessions remaining. I still don’t understand that. I am sure if I did a bit more research it would become far more apparent; something for another day perhaps.

I just corrected a typo reading ‘chemoterhapy’, I think this is fine evidence of the abundance of Irish accents in my day ward. Does it count as a digression if I have not yet started the bulk of my entry? Another thing I am unsure about. 

This particular chemotherapy day commenced in Edinburgh; an authorised yet on the down low (until now) visit to see my sister and brother-in-law. This required a 5:45am alarm, a 6:45am taxi, an 8:45am flight, an 11 something AM train, an 11 something AM bus and an arrival at the Brighton outpatients phlebotomy around 11:45 AM. I am not exaggerating the three-quarter-past-the-hour time slots. This is actually how they transpired. I strongly suspect the '11 something AM train' was actually the delayed 10:45 AM train; a result of an ever frequent southern mainline signal failure. Don’t National Rail know they are destroying my blog symmetry? Ok, most certainly a digression this time.

The need for additional blood tests pre-chemo was due, yet again, to some epic neutropenia 0.2 x10^9/L (do I still need to use the units?) I am now aiming for 0.0. Clinically there will be very little difference between 0.0 and 0.2. This neutropenia required further GCSF injections whilst in Edinburgh, which requires its own separate little blog post, presented to you, unchronologically, at a later date. 

Armed with an urgent yellow blood form and a 2pm chemo appointment, I felt that 11:45 AM was sufficient time for the super-duper lab to process my super-duper blood. This was a failed experiment. My little blue triangular ticket stub, the entry ticket to the actual phlebotomy room, was twenty places behind the current fluorescent number. The urgent yellow form seemingly means jack as far as queue times are concerned. Turns out you need an urgent red sticker on top of your urgent yellow form and your ‘chemo due today’ clinical details. And the urgent yellow form is patented. Some patent. Now I wasn’t too adverse to waiting 45 minutes for my blood to be drawn, so long as my results were ready by 2pm. I had time to kill and what was proving to be a most enjoyable book to read. Once my very smooth venepuncture was complete, I ventured to a nearby coffee house in order to continue my 'search for the best long black coffee' crusade.  

Here, once again, I will deviate from my main story in order to indulge you with an oddity that occurred in the coffee house. I was perched at the counter, feeling rather contented with a particularly palatable coffee, when in walks this fellow, mid-late thirties, who was acting a little peculiar. I am sure even my Kiwi readers will be aware that Brighton, and especially Kemp Town, has more than its fair share of eccentrics. Unfortunately, this guy was not donning a sombrero or wearing a purple gold starred cape, nor was he, as has been witnessed in the past, combining both to form one epically bizarre outfit, no this dude was rocking completely nondescript attire. But he was swaying, and he did ask to see a full menu (which they didn’t have) and he did make exceptionally precise specifications as to how his ciabatta was to accompany his soup. And then he sat down beside me, letting out a long audible pleasure groan, smacking his lips, in the process. So I am starting to think this guy is a little strange. He emits another similar noise when he tastes his soup and further changes his ciabatta requirements, adding to my growing concern that he is a complete nutter. However I am mindful that I am being hastily judgemental; I mean it was a comfortable chair, and the soup did look pretty bloody tasty. Following the completion of his soup, he orders a coffee, it is a coffee shop after all, so this makes sense. His coffee choice? A long black with two sugars and a knob of butter served in a takeaway cup, oh and he has a tab so he knew from the outset that this particular coffeehouse did not have a full menu. I imagine his order to be the finest example of how to utterly destroy a long black.  

Tangent over now, I just thought I would chuck that in to bolster the word count. Back to the lymphoma/chemotherapy diatribe. Arriving at the day unit at 1:30 PM, an hour and a half after my phlebotomy, my results aren’t through yet. They’re still not through by 2:45 PM when my husband and parents arrive, although I have had my cannula inserted; right hand this time not left in an attempt to decrease next week's predicted arm pain. My chemo starts around 4 PM. There are only three of us left in the room, making it easier for my family to tag team into the companionship duties. I am sitting in an oversized dull teal chemotherapy chair this time by the way. The chemo itself is fairly unremarkable, waiting, waiting on the lab, waiting on the pharmacy, anti-nauseas, hydrocortisone, A, B, mild burning and itching, V, mild restlessness, D, ow ow ow my vein followed by an infusion rate decrease and some perpendicular arm positioning. I was home, exhausted, by 7pm, for some tomato soup (I crave strong tomato flavour post chemo) and a nifty concoction of green beans, broccoli, nuts and beetroot my mum whipped up. Oh and University Challenge. I can’t remember my score.

Monday night – Post chemo and I feel horrendously shit. The anti-nauseas mean the heroic efforts I am undertaking in attempt to expel the contents of my stomach are going tremendously under rewarded. A pitiful quantity and certainly not enough to relieve any queasiness I am experiencing. There is a line in Flannigans Ball about a patron dishing out ‘a terrible kick in the spleen’. I am not sure that heaving ones guts out was quite what they were referring to, but my spleen most certainly feels as though it has received one mighty boot. My left arm still ails from two weeks ago, whilst my right hand from chemo today. There are viper bite like marks on the said right hand, with oval blue bruises surrounding the pierce marks. Actually, they more closely resemble ghoulish red eyes peering from deep dark sunken slate blue sockets, mouth absent, in true spooky ghost fashion. None of this friendly Casper mumbo jumbo. My chest burns – especially when inhaling, my nose is persistently bleeding, I have detectable swollen lymph nodes in my gallbladder, neck, jaw, collar bone and near my parotid gland, mild bone pain, a weird itchy patch on my right shoulder with skin texture resembling rough brown leather, fatigue, restless legs, a sore throat, the aforementioned general malaise, a headache, my second period in a fortnight, three ovarian cysts (sorry boys) and tingly lips – but not an ‘Oh no I’ve had too much sherbet’ tingle, more a ‘crap crap crap, that was an entire jalapeno’.  Blah is not an adequate description. Lachrymose would be more suitable. Chemo is hard enough and now my body is throwing unexpected hormones into the mix? I have crazy bruising of indeterminable origin on my legs, supplementing the sporadic patches of hair growth; far from attractive lower limbs I can assure you. It is a very stormy night, ear plugs may need to be deployed. At least the wind deters the foxes from their brash twice a night mating ritual. What does the fox say? A loud cross between a dying parrot and an enraged chimp. Turns out Ylvis were spot on.

Tuesday – An interesting day. Sleep was surprisingly plentiful Monday night, despite having run out of nearly-empty-calorie-sleeping-pills and a feeling of utter despair.  I still awoke with a strong burning pain in my chest, one that burnt brighter each time I took a breath, although at least my overall general feeling could now be downgraded to blah. Here comes the interesting part, or indeed, the not so interesting part. I managed to lock myself out of my flat whilst signing for a courier parcel. I spent six hours sitting outside my apartment door (fortunately still inside my apartment block) wearing a khaki dressing gown (it really brings out the pallor), a hole ridden long sleeved top, comfy jeans and discoloured socks (the ones not suitable for public eyes), listening to the countless missed calls on my phone (safely locked up in my little flat) and trying to decide if I had enough artistic skill to replicate a Jackson Pollock using my sheading strands of hair. If anyone is wondering, I do not. I followed this up with two hours of ‘get to know your neighbour’ time, awaiting Mike's arrival home from work and my subsequent rescue. Not from my neighbour, she was lovely, from the entire situation.

Hindsight being the bitch it is, I realised, around midnight once tucked up in bed, I should have walked to the corner of my street where my GP surgery is situated, explained to them the situation I was in whilst politely requesting they phone Mike so he could sort things out. But I didn’t. Which is why this entry is a day late. Currently it is Wednesday morning. It was Tuesday night when I started this. I have had nada sleep, so please excuse the typos and poor grammar. My spleen is still painful, but only mildly, so aside from the fatigue and the hunger (easily fixed) things are not too bad yet.    

Chemo round three... It may be getting easier

Apologies to my dear avid readers for not posting a pre chemo brief. I had intended to, however for a couple of inadequate reasons it did not end up happening. Namely, I was acutely aware that I had already had one strop of a post earlier in the week, and did not wish to burden you with a second so soon after. Also there was a degree of laziness involved; a rather obtuse degree. 

My weekly bloods displayed a neutropenia warranting at least an eyebrow raise had I been validating the results at work. A level of 0.4 x 10^9/L of blood (a good scientist would have published this unit already), so we are getting clinically low now. I received my reliable Friday night phone call from the haem day unit, again mid-wine but fortunately pre-rugby, to inform me thusly and tell me my prize…. more GCSF injections! Three in fact, on concurrent days. The GCSF is kept in my fridge which creeps me out; my occupation conditioning requires strictly separate food and medical fridges. The only upside to my ever increasing appetite is that the subcutaneous injections are now much easier. It turns out weight loss may no longer be an issue.

I had been forewarned that GCSF makes some people feel a bit crappy, however, other than the previously mentioned sternum pain, I didn’t have too much strife the first time around. This time was not as successful. The promised ‘flu-like symptoms’; vomiting, aching, no sleep, more bone pain – both sternum and pelvic this time, were severely apparent. Mike would probably like me to also mention crankiness, but personally I think he is a little biased and this isn’t his blog anyway. There was a particularly low point Saturday afternoon, my head down the toilet heaving my guts up, tears streaming down my face, nose bleeding into the bowl, our toilet seat is broken so I am holding it up with one hand all whilst my body has decided to shiver uncontrollably. Potentially a Hunter S Thompson moment, although at least he got a buzz, all I got was a cytokine release. At the time of this despair it was difficult to ascertain whether it was due to the GCSF or, possibly, neutropenic sepsis. As you have probably noticed from previous posts, I have become rather neurotic since this pesky diagnosis. Fortunately, my temperature never breached the designated danger point of 38°C, and my previous CRP had been a staggering 1 mg/L, so the GCSF was attributed with the blame. 

Subsequent to my Sunday evening injection I was lucky enough to enjoy an all over body itch. Whilst silently thanking myself for having the forethought to trim my fingernails earlier in the day so I could go all out with the scratching, I was hit with a most unusual sensation. It was as though I had jumped into a pool of pop-rocks; an all over body tingling, which had the potential to been a kind of cool experience but instead it was entirely unnerving. Throw in some rigors for good measure (my body never fails to miss a good shiver if the opportunity arises) and I was totally freaking out. Scrutinising the drug information insert did nothing to relieve my concern, but did inform me that the vomiting could fairly and squarely be blamed on the GCSF. A quick google search gave me nothing but the certainty that I had febrile neutrophilic dermatosis (I didn’t) so I threw back an antihistamine and a not-so-magic pill and let the night put an end to my misery. 

I awoke alive, which is a plus in my books (as the great Tommy Ill would say) so it can’t have been too serious. Although it was Monday which, as the title of this post has promised but so far not delivered, was chemo day; a leisurely 2pm appointment. My attempt at losing a Civilization V scenario was interrupted by a call from the haem day unit around 10am politely inquiring where I was as they had expected me in at 9am. My timeslot had been changed; I hadn’t been notified. A power shower, a very well packed lunch from Mike and a taxi ride later I arrived flushed at the unit blubbering about a mix up in times. Who would have thought I’d have been so eager? Mike was tasked with collecting my parents at Gatwick after their thirty something hour flight from Auckland, so I was flying solo this time. Some may argue he had the harder task.

Once I had regained my composure (let us assume I had some to begin with), I noticed with unrelenting horror that I had lead you, my darling readers, astray! The previously mentioned oversized salmon chemotherapy chair is not even close to salmon in colour! More a dull hot pink, which I guess just makes it pink. I apologise profusely for leading you down this incorrect path of imagination. Although, I believe I did publish a photo last time, so most of you were probably aware of my inability to correctly describe colours before I was. Nevertheless, the apology still stands. 

My sister had given me a tremendously tough personal best target of five hours, but I was up for the challenge. The Friday neutropenia resulted in further blood tests, and therefore another pre-chemo wait, however the cannula went in without a hitch, so I was feeling confident I could achieve her ridiculous goal. Unfortunately my faithful laboratory friends had other plans. At least a 2.5 hour wait for the neutrophil count, a count around the 27 x10^9/L, so rather elevated. I like to think that a rip-roaring blast flag, some poor clinical details and a panicked urgent blood film requiring a manual differential was the cause of the delay. As I have alluded to in the past, I do enjoy a bit of drama. Whatever the cause, pharmacy had definitely brought their A-game that day, I think I had the drugs within the hour, but even with this promptness my five hour objective was already looking shaky. 

My chemo has arrived, the old lady opposite is giving me a scowl. She has been waiting for as long as I, in fact her transport has already arrived to take her home, but there is no sign of her therapy happening anytime soon. I have a brief discussion with the nurse about my previous darcabazine reaction, but couldn’t convince her to give me an antihistamine to cover me. This should be fun. The A, B and V infusions go well, even my previously documented agitation as a result of the vinblastine was absent. I was pretty chuffed, I am knocking on the door of five hours biatches! But no. Darcabazine time. The prescribed infusion rate means it should all be over in thirty minutes, but the nurses inform me that no one has ever managed that. This may sound like a challenge, but I can assure you it is not one I will ever be attempting. They set me up with a ninety minute infusion, and not even five minutes in I am thrashing in agony. Honestly, how cytotoxic is this drug? Is actually stripping the endothelium from the inner my vein, whilst bursting every valve it is passes through? Because that is what it feels like. A viscous blob slowly destroying my insides. No wonder my spleen is causing me so much pain. In what I wish had been a much calmer voice, I plead for the nurses to decrease the rate again. I can imagine my sister, had she been there, feeling a perfect revenge opportunity had arisen; revenge for all the ultra-marathons where I have denied her a rest in order for her to achieve her target. Thankfully, she wasn’t there to utilise such an occasion. 

The pain is still epically present, but it seems to reduce somewhat if I drape my arm over the side of the chair and hold it perpendicular to the floor. Unfortunately this draws attention from the nurse, and she turns the infusion rate down yet again. Is that a wry smile from the old lady opposite? I think it is. I expect you all to be judging her accordingly right now. Despicable behaviour, having therapy races. Given her age, she was probably a pro. I am still a rookie. Tut tut. Despite the further reduction in infusion rate, now in excess of two hours, my arm still needs to be held at a right angle in order for the pain to be remotely bearable. I find a more subtle way to achieve this, the old ‘I am actually holding my book comfortably whilst resting my elbow on the arm of chair’ routine. You should try it sometime.

Furthering my torture, the ‘ever eager to beep’ mechanism the infusion runs through has an unavoidable ‘time remaining’ countdown on it, persistently informing me of my imminent failure. I am pissed off, Mike has already completed his mission and wishes to come and join me since I am having oh so much fun. Is he rubbing his success in? Has this become some sort of Amazing Race episode - chemo vs husband vs old lady? He is getting one word responses. When he does arrive I am relieved he can read through my tough texting exterior, because although, to be quite honest, this was easily my best chemo experience thus far, I was still very close to tears. And crying would have given that old lady far too much pleasure. Two hours later we were on a bus, total time of six and a half hours, still a personal best, but only narrowly.

Now, Tuesday morning, I am not feeling too bad. Certainly the best I have felt the day following chemo. I am pale, with dark grey bags, but am comforted by the current Topman model; apparently the cancer patient look is in this season. I was just now thinking that the colour of my nose would put Rudolf to shame, then it started oozing blood. Obviously my nose does not take kindly to such compliments. I have bruises down my left arm, not only down the entry vein, but bluish purple tracks running entirely down my forearm as well. At least I have something to point to and cry “I am not exaggerating, the pain was shocking!” A poorly scheduled fasting ultrasound appointment means I am trying to quell my insatiable appetite with the horrid mouthwash and copious amounts of water, resulting in frequent trips to the ladies, where I am rewarded by catching a glimpse of my Knight of the Woeful Figure reflection. On the positive side, I still have both my ears.               

I would like to take this chance to thank everyone back home for all their kind words, cards and gifts that my parents brought forth from Aotearoa, they were very gratefully received, and, in most cases, heartily devoured. Thank you!

I am about to throw a tantrum

I warn you, this will most likely turn into a giant ranting moan. One long list of complaints, confirming that I have resided in England long enough to conform to the stereotype.  Ah, some casual racism to start the whole thing off; it is mere banter my English friends! I have only met one or two that fall into the alluded classification, and I choose not to associate myself with that minority. Hmmm, shall continue in an attempt to dig myself out of this hole? Do you have the time, to listen to me whine? (I am sorry, the song just came on my playlist and the timing was too perfect not to include.)

Where to start? Well, I can tell you that I am nearly ready to tag out. I have had enough and do not care to participate any longer. My team has fallen apart; the key players are starting to act as individuals, maybe in the hope of glory, who knows? I have grown tired of the prolonged anatomy lesson my spleen is giving; I have never enjoyed anatomy anyway, this is the reason I suck at it. Physiology, that is fine! Do your thing little organ, I do not need regular updates. Yes, I know you are underrated but you’ve always been one of my favourites, so there is no need to persist with this pain. I think it is ignoring me. I should probably be thankful it doesn’t have a twitter account. Incidentally, an enlarged spleen is called splenomegaly which, let’s be honest, is a fantastic word.

Directly opposite my spleen, a lymph node is causing far too much grief. I know it is enlarged, but the pain it is instigating is disproportional. I am so disgusted with this particular node, which probably has a biological name but I refuse to memorise it as a display of my indignation, I am not talking to it. So, no lecture for that nameless node. Having these two complaints leads to bilateral discomfort under the edge of my ribcage. [Bilateral is probably the wrong word as I only have one ribcage, but I can’t think of a better one so we’re just going to have to deal with bilateral. It describes what I mean.] This discomfort makes sitting, currently my most prevalent pastime, unenjoyable. My already pronounced slouch tends to accentuate, causing my biopsy node (either subclavicular or lateral – I have already explained my weakness in anatomy) to hit my collarbone and pipe in with its own qualms. I am sorry my friend! I know you have been through a lot, but please, just because the others are getting attention does not mean you are allowed to interrupt. Honestly, they’re worse than children! Currently, my favourite tumour resides in one of my intercostal nodes (lower abdominal). It is the one that is reaching into my bone marrow and my bowel (yup, stage IV folks). It is my preferred because, although a delinquent in the past causing the most damage and the most pain, it is now causing far less than it was and far less than the aforementioned parties. Silently doing destruction behind my back. Or into it.

Above my thoracic (an important distinction) diaphragm, my chest hurts in a multitude of different ways; more ways than ever I imagined it could. Thanks to the GCSF, there is a crushing aching sensation in my sternum. Thanks to the chemo, there is a course raw feeling in the mucous membranes lining my oesophagus. Thanks to the small (very small) masses in my lung, it burns to breathe. Thanks to something I can’t explain, the back of my throat aches, as if I am perpetually on the verge of a cold. I have ulcers on the inner of my bottom lip, and a cold sore is forming on the outer. I was offered a choice of mouthwash flavour; original or mint. I replied that it didn’t matter. It totally matters!!! Original has the taste of what I imagine most industrial chemicals taste like with a splash of aniseed. The bitterness lingers throughout my mouth for hours afterwards, marring any food I try. I will concede that the wash does seem to be working on the ulcers though.

The dacarbazine is causing some serious vein irritation. The entire length of my arm burns, culminating to a persistent stabbing ache on my inner arm at my elbow joint, or at any point I happen to put a little pressure on. This leads to gammy arm holding, which in turn leads to painful arm muscles. The bruises I obtained during the great cannula experiment ten days ago are still prominent. My skin is blotchy, my cheeks puffy, my hair thinning, yet, amazingly, still able to display uncontrollable volume. Due to the increasingly not-so-magic-so-therefore-rationed sleeping pills, my balance, which has never been a strong point, is fairly unsteady. My body moves but my legs lag behind. Cue some very close calls, a few unnecessary bruises and some gallant saves by Mike. Luckily, I am now light enough for him to catch me.

I am about to continue my complaining, but I am going to include a symptom that, until now, I have refrained from mentioning. If you truly do want to know the depth of my despair, I feel this aspect really brings out the sorrow. So, although I will use as many euphemisms as possible, anyone who wishes to avoid reading about my lower intestinal complaints, ought to skip ahead to the next paragraph.  Here goes. Argh, the anti-nauseas, the not-so-effective painkillers, the not-so-magicsleeping pills, they all accumulate to form a rather uncomfortable situation. I finally understand why people take reading material to the restroom. Thankfully, I am presently reading Don Quixote; 768 pages should be long enough. I know I am in a pretty dark place when a bowel movement is not only my biggest achievement of the day, but one I am excited about. Is it appropriate to have a desire to phone your husband after going to the bathroom Randy Marsh style? Or to fist punch the air and dance through the flat celebrating your success? Don’t worry, I have only done the latter. The doctors can’t prescribe a prolonged course of laxatives because you tend to become reliant on them. I am fairly certain there isn’t a support group for that dependency.

My attempt to make this post more positive

Welcome back to any readers who avoided that last paragraph. Be rest assured that whilst you were away, the sunset over the terraced houses and the British Channel illuminated the charcoal clouds with warm pink and auburn hues, however the photograph I captured through the grubby jammed window of our top floor flat just dose not do the beauty justice. [This is what happens if you avoid toilet humour. You get crap.] I would like to give a shout out to my liver which, despite being picked on by its neighbour, is behaving enzyme wise; my kidneys - both are doing standout job filtering all the cytotoxins pumping through my veins; my pancreas - because I don’t want to piss that beast off, and finally to ya’ll out there; writing this has greatly reduced my frustration, meaning my lovely, amazing, caring, stunningly handsome husband will receive a significantly scaled down whinge we he arrives home.