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….

    

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.    

Another post chemo whine

I cannot convey to you how exhausting I find showering. I feel good prior, like maybe a walk and a long black are on the cards once I clean myself up a bit - remove the drool marks from my face and calm my Jedward hair down, but afterwards I stumble out of the bathroom, panting and dizzy desperate for the couch. Now the room has a rocking spinning sensation, a sensation I had not experienced since I was either six years old or drunk, before this cancer thing.  Right now I am neither of those, although I fear some may liken my persistent complaining to that of a six year old. 

The days directly after chemo were not that bad. It seems my body is becoming conditioned to the fortnightly onslaught of poisons. My parents, who arrived to help out, must have been sorely disappointed by my upbeat attitude. Either that or I am vastly over representing my woefulness, although I have always felt that a woe was subjective, a bit like pain. 

Having had Tuesday pass by reasonably successfully, I was mindful that my body was probably about to be pummelled.  I was not wrong. Although Wednesday started off well, I may have been overly confident in my ability to survive an entire day. By midday I am already fatiguing, my muscles weighing me down, I am sure if I stand these lead laden limbs will drop me to the floor. I am an emotional wreck, everything is wrong; in the house, in the city, in the country, in New Zealand, in the world. How am I going to save the world if I can’t even shower without needing a nap? Should I be showering at all? There is a drought in New Zealand, maybe I should be conserving water? (I’ll tell you now that there is most certainly not a drought in Britain, so maybe that thought was at the more irrational end of the spectrum). I won’t even go into the thought process of whether, morally, I should be accepting treatment. Given Hodgkin’s is a Western disease and given that I am a biologist, is this not nature saying I am the weakest link? Isn’t that what I believe? Should research efforts be concentrated on more pressing concerns in humanity, rather than prolonging the life of an individual who has led a relatively selfish existence? Am I not a total walking contradiction, as these cytotoxins have most certainly been trialed on animals before they ever reached my veins? Or, for those that are less concerned about vivisection, how should I feel considering they destroyed millions of lives as a biological weapon of war before their therapeutic aspects had been discovered? What sort of agony were the poor bastards in the trenches going through, given what I am suffering with controlled doses? 

Well, that was an unexpected diversion into my psyche. Welcome to my brain! Those are the sort of questions that regularly buzz around my head, and normally I can handle them appropriately, or I get drunk and ramble on and on to anyone within earshot. Some may argue that I don’t even need the alcohol. My point is, in an ordinary situation, I can suitably deal with these thought patterns. But when my physical state starts to decline, those thoughts can become a little overwhelming. Don't worry, there is no need to call Lifeline. I am just getting a little Hesse on you all. Nothing like a suicide joke to lighten the mood. And Hesse didn't kill himself, he lived to the ripe old age of 85. So there you go.  

Back to Wednesday; my body and mind rapidly deteriorating, fatigue setting in but no sleep will arrive. Thursday morning; two nights of poor sleep, hours lying awake trying to solve the problems of the world, not-so-magic pills are slowly becoming empty-calorie-pills. There I was worrying about dependency when realistically biological resistance was the main concern. I am either too hot or too cold, which is instigating a slight but frequent chattering of teeth and complete discolouring of my lips. Despite my total exhaustion, I cannot sleep, not even a daytime nana nap. My pen feels as if weighs a kilogram in my hand; this is quite possibly the hardest physical workout I have had in weeks. I am hungry but don’t want to eat. I want to eat but then I am not hungry. Avocado on toast is underrated in such situations. I am just saying. All the regular culprits are voicing their dissatisfaction the only way they know how – by initiating pain. A lymph node behind my ear has decided it would like to be included into my ever growing pool of hated body parts. I didn’t even realise it was enlarged until very recently. Have I mentioned my left arm? I had best not get into that rant. It will suffice to say that I am not opposed to the idea of amputation, with or without anaesthetic.

Putting aside the pain and fatigue, (have I mentioned the fatigue yet?) I still think I would barely classify as a fully functioning human. I seem to have developed a fondness for knocking everything over, my water bottle now resides upturned on the floor; there is no point in picking it up just to have it knocked down again in a few minutes. Mike has started placing the remote out of my reach, elsewise he will never be able to locate it. For an object that is not cylindrical, it sure can roll. My ability to form a cohesive string of thoughts is severely hindered; this entry has taken five days to resemble anything remotely lucid. Usually the word or thought I am trying to convey escapes me, and then I get exceptionally irritated at myself. Simple tasks such as loading the dishwasher, require a written plan of attack, and, potentially, a well authored SOP. Any volunteers? To be fair, I think I had to pass a competency test in order to be allowed near Mike’s dishwasher in Nelson. It only took nine years. Maybe my dishwasher loading capability has never been a strong point.

I think it may be time to wrap up my whine for the week. My left arm is causing me unrelenting grief, my liver, my gall bladder, my spleen, my neck, my lower abdomen, my pelvis, my chest, my throat but not my mouth – horrid mouthwash gets a win there, are all contributing to the discomfort. The spontaneous nose bleeds have reached a frequency where I no longer even bother to clean the congealed blood from my nostril. I bet I resemble a total cokehead. Maybe I should move to the City of London; I wouldn't look out of place there. But I do feel a substantially better than I did last week. I am hoping to go back to work next month; I’ll probably need IV caffeine, and a nose plug.                

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.             

Seeing as it was so fun the first time around, let’s try chemo again

I am afraid this entry will be a little boring. Good for me, less so for you. I know my fans want drama; this could be a reality TV show in the making. On more than one occasion by more than one individual, it has been mentioned that I have a tendency to be slightly dramatic. I’ll see what I can drum up for you. 

Friday evening, mid nose bleed, post one glass of wine, I received a call from the Brighton haematology day unit just to let me know that my neutrophils were 0.8 (they need to be >1.0) so I would need bloods again before my scheduled chemotherapy. Essentially, they were telling me to expect a wait when I came in on Monday and not to be surprised if, on Monday, they decided to move my chemo to Wednesday. Clinically, if I were at work, I wouldn’t batter an eyelid at a post-chemo patient with a neutrophil count of 0.8. Maybe 0.5, but 0.8 meh. To be honest I was more concerned about my platelet count (a very normal 330ish for those interested) because this nose bleed had been going on for a wee while now. The objective of this paragraph was to let you know that, going into the chemo appointment, I was prepared for a wait. A good writer wouldn’t need to summarise each paragraph with its planned objective. 

Monday morning, post a magic pill induced sleep, equipped with food, music, books, writing material and nerves, we rode the bus (upstairs seats not downstairs) to the hospital, arriving a good thirty minutes early, giving time for those nerves to reach an unsuitably high level. I was annoyed at the complacency I had displayed when preparing my hair for the day ahead. Already it resembled a cross between a 1986 Bart Simpson and a 1981 Princess Diana. 

We were intending to leave and grab a coffee whilst we were waiting for the blood results, not the mud water Costa coffee that seems to plague every hospital in Britain, but a real coffee from a reputable coffeehouse. However, once I had established myself in my oversized salmon coloured chair, I was reluctant to move and too embarrassed to ask if I was allowed, so I picked up my book and settled in for the long haul. And it was a long haul. It took half an hour and three attempts to get the cannula in. I’d not hydrated myself enough prior to my arrival and, despite my current colossal appetite, I think I am still losing weight, so venous access was difficult. I am rocking a few bruises now – war wounds, makes it all look worse than it is! The lab had my blood results back within the hour; biomedical scientists are incredibly hard working and, globally, I think they require a pay rise. I’m sure you all agree. Anyway, I had a neutrophil count of 0.6. They had actually dropped, not gone up. Maybe I should be a bit more cautious about eating unpasteurised cheese…. 

The haem team decided to crack on with treatment anyhow, so now it is up to pharmacy to deliver the drugs. This must be quite a complicated process as it took over three hours. Ah, that is unfair of me, and may be due to a small degree of inter-departmental hospital rivalry. I imagine the prescription had to be escalated through various chains of command due to the neutropenia. They have rules for a reason, and here we were breaking them. Good. I hate rules. I have been occupying my large salmon chair for four hours or so before the chemo even arrives. Hurry up and wait. Luckily we remembered food.  There was one hangger experience, but Mike managed to subdue it with some nuts and an éclair.  

Nuts and terrible hair

The chemotherapy itself was significantly easier than the first experience. I was given some IV antihistamine straight up, so I didn’t have the reaction this time. All I got was a mild, nearly enjoyable, tingling on my lips, like eating too many pixie sticks whilst on nitrous oxide. They reduced the infusion rate of the dacarbazine, so initially the vein pain was only mild. It was reduced again when I said ‘yeah I am good, the pain is only mild this time’. They do not accept pain.

Prior to leaving the hospital I had a demonstration on how to inject myself with GCSF. This is granulocyte colony stimulating factor, and basically opens the bone marrow flood gates, with the intention of replenishing the neutrophils in my peripheral blood, making me less susceptible to infections. GCSF is one of my favourite haematology drugs. I am going to have a lovely leucoerythroblastic blood film that I am just dying to look at! Currently the injection is acclimatising to room temperature on the bench and I am rather nervous about the prospect of injecting it myself, but toughen up right?! Eight year old diabetic kids deal with like four injections a day. I also have my very own sharps bin, just in case I was missing work. 

Let's have some warnings shall we?

After chemo? Well we got home around 7pm, having left the house 8 hours prior. A massive feast of pizza and garlic bread followed; this went down far better than the Thai. Our Monday night ritual of attempting to answer four questions each on University Challenge was upheld, however the four questions part was a complete failure. Particularly disappointing as I missed quotes from both 1984 and Slaughterhouse Five; two of my more favoured books. Even post chemo this is unacceptable! I know a certain person will be shaking their head in disapproval right now. I am sorry. I was in bed by nine o’clock with a hunger/nausea/throbbing lymph node combo. A magic sleeping pill had me knocked out by nine-thirty.

Right now, Tuesday afternoon, I have just jabbed myself in the gut. The anxiety that I’d developed prior to doing so was enough to substantially increase my already present nausea. Fatigue is definitely high on the symptom list, despite the ten hours of sleep I had last night. I am eyeing up the ludicrously large bottle of Coca-Cola on our bench, but I think it will be more cytotoxic than the chemo. The skin on my hands has the texture of 220 sandpaper, maybe a grade or two lower than that. The four litres of water I am attempting to consume have led to frequent trips to the bathroom. My knowledge of abdominal anatomy is really improving, as the lymph node below my liver, the one near my pelvis, and my spleen are all letting me know their presence. I am dying for a beer. Do you think anyone would notice? Mike doesn’t read this and you guys won’t dob me in will you? Wink, wink, come on I have cancer. I promise not to bleed on you. (My god was that two Monty Python references in one paragraph? I need to stop typing!)

Oh I promised drama! Ok what can I do here?  Well my nurse for the day was Irish, from the North West, just south of the border. She made reference to those north of the border being a little dodgy. She works with a Northern Ireland guy who was deliberately within ear shot, and some light-hearted jibbing ensued.  Nothing like some sectarian workplace banter to make the day more exciting. For the record all of this was in good faith, and the nurse was lovely. I wanted to make it dramatic, but with such a delicate topic, well let’s just say I don’t want the level of exposure or controversy like that of the annual Tata Bay cardboard boat race.

Overall, I am somewhat detached from everything that is going on. Obviously not the physical symptoms. The fatigue, the nausea, the pain; I can’t avoid those, but the actual ‘I am a lymphoma patient’ that part I am not sure I have come to terms with. It seems it is happening to someone else not me. I mentioned in an earlier entry that I had the cellular effects down but not the physical ones. Well, now it has reversed; I am becoming accustomed to the physical symptoms, but the cellular level I am consciously oblivious to. The neutrophil count of 0.6, that isn’t me. I am not on GCSF, this is what happens to patients at work. It can’t be me. Maybe every patient has this same level of disconnection. Maybe it is my failure to link my workplace knowledge to my personal life. Maybe this is a good thing – leave work at work and home at home, but ultimately I think there is a small degree of denial going on. You know it’s not just a river in Egypt. I guess a small degree of denial is an OK thing, it certainly keeps the external positivity going. Just so long as any potential bad news doesn’t take us too much by surprise. Not that I am envisioning any bad news, but you know, well you never know. 

These days post chemotherapy

Every thought that has passed through my head in the last few days seems as if it has been tainted with a slight, or in some cases a more than slight, negative vibe. In my mind I imagine each thought, each memory, each event appearing (in cartoon form of course) with a black spot attached. As if somebody has come along with a paintbrush and some black paint, lodged themselves into my brain and is systematically daubing each vision, each memory, each thought, with his negative graffiti. A symptom I had pre-diagnosis, was a relatively pessimistic state of mind, a sort of ‘feeling of impending doom’ and, I’ll admit, I have always been moderately cynical - no blaming the cancer on that one. But back then, the negativity within my mind appeared a little different. It was more like a cloud flooding my brain, a cloud that tended to get lower and darker as the day progressed. Sometimes there was high cloud, sometimes thick cloud, and sometimes clearing cloud with flickers of sunlight shining through. The negativity has changed, because now I have a constant downer on every thought. Little chance of sunshine.

Well, what I am trying to say is that today I don’t feel that way. I have delayed writing this post until I was feeling mentally better for fear that it would be too depressing. Now that I do feel better, look at what has happened: I have gone and got all Steppenwolf.  I think I need to liven the mood up a bit. So, today is a good day; it is Saturday, my husband is still in bed beside me, the morning sun is shining through the kitchen, I only woke up twice in the night and I have just had my first sip of coffee. I am sunshine and internet kittens right now, not black blobs and dark clouds. Although the power tool in use across the street isn’t doing my four day headache any favours. Come on mate, ease off, don’t ruin my buzz. 

I was totally unprepared for my first treatment and, unfortunately, the same theme has continued post treatment. I am now five days post-chemo. On the lead up the medical team told me that days five to twelve, that is when I will be at my lowest. What they mean is that this is the danger period. If you do feel get an infection during this time, it could be pretty serious. On this point, I had put my science hat on and in doing so I missed the main message the doctors were trying to convey. I am well aware of the effects of chemotherapy on the bone marrow; my circulating neutrophils have a life expectancy of around five days. The chemo agents attack rapidly dividing cells. Bone marrow cells are rapidly dividing so they become collateral damage, therefore there is a lag after my neutrophils have died before my bone marrow can kick in and produce more cells. Thus I have no neutrophils and become more susceptible to infections. A similar cycle for the other blood cell lines, just change the life expectancy here and there, and it makes sense that days five to twelve I will be at my ‘lowest’. I knew how these drugs effected the body at a cellular level, but I had little or no knowledge on how they effect people physically. I had failed to grasp that I was going to feel like utter shit before day five. 

My body does not want these ridiculously messed up drugs in it. My body is angry with me. At a clinical level this crappiness does not matter. The doctors cannot do anything about it, and it is not unusual, so therefore I had not given it a second thought. But the crappiness exists, and it sucks. As it turns out the chemicals stay in my system for around seventy-two hours, although I would say that it seemed longer than that. I say “as it turns out”; they had indeed told me this, more than once, I just didn’t think ‘oh I will feel like crap for three days’. I never made that connection. 

The major side effect for me, which probably compounded everything else into one mass of utter of gloom, was what they termed ‘restlessness’. I have been waking up hourly for the last three months or so with sweats and shivers. Because of this I was given steroids a week before my chemo started, which stopped my rigors almost instantly and certainly made the sweating far more manageable. Again, the steroids lead to ‘restlessness’, so although I wasn’t woken by anything, I wasn’t falling asleep either. Fortunately, the one thing I did do correctly on my chemo day was mention my lack of sleep to the nurse, who made the doctor prescribe me some hypnotic agents – but only seven and with warnings on the risk of developing a dependency.  

Cue Tuesday night, the day after my first chemo appointment.  It is 1:30 am and I am not even remotely close to sleeping. I am reading on the couch because I have been ‘restlessly’ thrashing in bed and my husband is trying to hold down a full time job. Our top floor flat is creaking and groaning in the unrelenting wind. I can hear a loose roof tile grinding with each gust. The room hastily lights up, surprisingly bright, then darkens just as rapidly, followed by a loud crack of uncomfortably close thunder. Hail starts pattering at the window. How is hail even hitting the window? The wind is coming from the entirely opposite direction. (I am not making this up or even accentuating the details, as I have be known to do on occasions, this was one horrid night.) My legs won’t stay still, my abdominal lymph nodes are throbbing with such regularity I have decided they are actually a beacon in a lonely lighthouse on this stormy night, circling repeatedly, yet finding nothing and alerting no one. The codeine may be contributing to this illusion. I am convinced that some snot nose little kid is pulling my hair and that this is causing my (still) unmovable headache, a headache that starts at the hair pulling site at the back of my skull radiating around to encompass the entire left hand side of my face. My lower left wisdom tooth has decided that now is the perfect time to break through my gum, a gum that is in an eternally dry mouth despite the four litres or so of water I have consumed. And, to top it all off, hovering in the background is this feeling of nausea that just won’t budge.

Stop whining right? I’ve got my magic little pills that will send me briskly into a slumber so deep I couldn’t wake even if I were six years old and it was Christmas day morning. Ah, but that would be no fun. I refuse to take a sleeping pill. I took one the night before, you see, and two nights in a row, well, I might develop a dependency. As a side note it has been pointed out to me that my previous habit of one to two (maybe three?) beers in the evening could be described, by some, as a dependency, so technically me developing a dependency would be an incorrect description, I would be merely replacing one. That aside, the entire thought process was flawed. I need sleep, I cannot sleep, I have pills to make me sleep, but I refuse to take them. 

By 5am I decide that the best bet is to move to the bathroom and lay there on the floor. I am not going to be sleeping and being nearer to the toilet seems the safest option. My poor husband is awakened by half an hour of dry retching (I can’t even successfully throw up). He stumbles in blarey eyed with a very concerned look on his face. The night had been a complete failure. Maybe one hour of sleep in total, no relief at all; just feeling perpetually worse with each passing hour. A state of discomfort that continued throughout Wednesday, although a fresh dose of anti-nauseas was of some relief. I spent the day watching a particularly bad game of T20 cricket whilst wishing the couch would open up and swallow me, thus ending my wretchedness. Death by couch. Not the worst way to go. 

It is pretty apparent that I survived the day. The couch didn’t eat me and the symptoms I had weren’t remotely life threatening. Just mere discomfort. I am finding it difficult to figure out how much of my self-perceived misery is indeed the chemo and disease process, or just boredom and a small degree of loneliness. But I think that is a question for another day. If I had written this when I was feeling miserable then I may have a better understanding. I am sure I will have ample opportunity to experiment in the future. 

I hadn’t intended for this to be a play by play of a Tuesday night in January; once again this has rambled on for far too long. I don’t imagine I have too many readers left at this stage, but for those die hards who are still hanging in there you’ll be pleased to know that I have learned my lesson and I now take my drugs when I need to. Even four hours sleep makes me feel a million times better than no sleep. Last night I got six and, aside from the aforementioned headache, I don’t feel too bad. The sun is back out (we had a patch of hail), I am contemplating leaving the house and I have just rocked out to a song that I'm embarrassed to admit is a guilty pleasure. No, I’ll never tell you which song it was.