A statistically bad chemo

I think the less I say about my last chemotherapy experience the better. Even the minimal information I do intend on parting with will probably gross you out. Basically, there were too many bodily fluids flowing from too many orifices. There are certain biological functions that, as an adult, one assumes they will always have under control. Ah, welcome to hospital! Here is a bag for your possessions, and another for your dignity. You’ll never get the latter back. The majority of the three days was spent playing trial and error with food sources in a vague attempt to keep said sources in my stomach. The error rate was high. Eventually, I stuck to minute sips of water. Despite my vomiting, shame, and general sentiment of doom and destruction, it was difficult to feel sorry for myself. The guy through the wall from me would heave for an hour straight. I, at least, threw up my pathetic meals rather quickly.

We are not entirely certain what lead to such an extreme decline in my chemotherapy tolerance. There were two variables, which I know is terrible science but I cannot help that now. I am beginning to think that biology is more of an art than a science. I will use this to justify my multiple variables. Anyway, where was I? Variables, right. I had begun a rigor-fever cycle a couple of days prior to this round of chemo. The fevers were never massive, they were deemed low-grade (which I believe means less than 38°C) by the medical staff. This time the rigors were blamed on the lymphoma despite my full blood count resembling an infection. I may have questioned the numbers. Twice. I still suspect I had an infection. The rigors do not matter much now, they have resolved, but a week ago they wore me out dreadfully. I was like super tired before chemo even began. 

The second variable involves the anti-emetics, which were altered slightly. They withheld the steroids. Initially I was happy with this move. I do not care much for the side effects steroids have to offer me, namely the pressing need for two a.m. snacks. Unfortunately, here I need to swallow what little pride I have left and confess: chemo is easier with steroids on-board. I feel better throughout and I feel better afterwards. Perhaps this may be deemed performance enhancing, but seeing as I am not a Russian track athlete, I don’t think anybody is going to mind too much. The day after my discharge I spent twenty hours horizontal, fighting, not really fatigue, but some haze between the real word and unconsciousness. Aside from a vague nausea and a relatively vocal stomach, I was not in any real discomfort, my eyes just refused to remain open and I could barely move. Next time I will take my dexamethasone like a good little girl and, perhaps, have days of production rather than destitution.

I have written more than I intended about my last chemo. It is a period I care to forget about. The topic I had actually intended on writing about is statistics. This could be an opportunity for you to stop reading. Things may get a little dark from here on, and the word ‘statistics’ has been used so, naturally, I expect some of you have drifted off to sleep. Also, I may mention particular statistics that you may not wish to know about. I kind of wish I did not know. I have stopped asking. So if you want to tag out right now I really don’t blame you. In fact, I admire you for lasting this long. Chocolate fish all round.

In July, after I received my unfavourable news, I was forced to think a bit. People talk about glasses and their perceived volume; is the glass half empty or half full? Most would probably decree that I was a glass-half-empty type of girl. To be honest I never really put much thought into the matter until I was, well, forced to. Upon reflection, I realised I was the type of girl who obtained, through certified channels, the exact capacity of the said receptacle, analysed the volume of the liquid within the receptacle using a traditional measuring cylinder, confirmed the result using a weight based technique (verifying the equipment's calibration status in the process), and had therefore discovered that the liquid occupies 47.25% (+/- 0.25%) of the volume of the receptacle; so indeed the glass is more than half empty. What I am trying to say is I like to know all the facts. And then I will overanalyse those facts.

In early August I became a little obsessed with statistics. I listened to the doctors, I read the textbooks, the papers, the review summaries; I knew the feedback cycles, the treatment regimes, the drug interactions. Then, sometime during my August-September diagnosis period, I developed a thought pattern, probably incorrectly, that medicine as a practise was entirely statistics. The case studies, clinical trials, meta-data analysis, create these numbers and percentages that are then used to treat patients. This is why my diagnosis process was so thorough: “It is very rare, Mrs Stocker, for you to have relapsed or refractory lymphoma given your clear scan in April.” It is like 8% rare or something like that. Not really rare, more statistically unlikely. I had a 92% chance of achieving remission and I blew it. Somebody needs to make up that 8% and once you find yourself in that minority group you cannot wish yourself out of it. As soon as you do that you are effectively wishing it on someone else. I would never wish this on anyone. For the 92% who made it through I am happy for you, but also a tiny bit jealous.

Having been blown away by stupid minority statistics, it is difficult to take the rest seriously or optimistically. Apparently 50% of patients are successfully harvested. Given my rapid relapse, that figure drops below the half mark; somewhere between 25 and 50%. So I had a 92% chance of remission and now, with some extremely positive thinking, it is around 40%. I began shying away from success stories, as if those whose treatment worked chipped into my 50%. It is not that I didn’t want other patients to be successful, I just didn’t want to hear about it. This is, of course, absurd logic. Each individual’s case is mutually exclusive, statistically not even medically. Medically each case is like an ENZA orchardist comparing apples with apples. I started to get cranky. What does ‘successfully harvested’ even mean? Do age, previous medical history, or charming personality effect these statistics at all? Is there a time frame? Is it six months? Three years? Five years? I would be happy with five years, hell, I would be happy with three. What happens if I am unsuccessful? Actually, I know the answer to that one: more treatment, worse statistics.

Eventually I became overwhelmed by statistics. 50% of salvage chemotherapy patients present with neutropenic fevers. 1% will die from these fevers. Less than 1% of patients fail to have a PICC line inserted. 99.9% of female salvage chemotherapy patients over 25 years of age become infertile. 50% of patients discuss fertility preservation options. 50% of patients who discuss fertility options actually take up the options. 10% go on to use the stored material. It is ‘unfortunate’ but not ‘unheard of’ to have needed multiple biopsies pre (or mid) diagnosis. At least they did not attempt to quantify that one. I have a scan coming up that will alter my statistics. Not the scan itself, but its results. Over the last couple of months I have stopped reading the statistics. I cannot change them and, although there is no point in dwelling, I did tend to fixate on them a bit. Ok a lot. Now, in order to make an informed treatment decision, I am required to read the science and statistics once again.

In here, this cancer institution, this day ward, this haematology ward, we are all unfortunate statistics. Not one person I have met has obeyed the textbook. Bone marrow transplant patients have had failed stem cell transplants. They were happy with the time they got. In the community the people one meets are usually survivors. Here, they are sufferers and complications. And there is always someone more worse off than me.

Some days I get hung up on the statistics. They are totally beyond my control and I think that is what bothers me; there is nothing I can do to change which side of the statistics I fall on. I get frustrated, sad, and angry. Other days I find it all oddly liberating. That life plan that always niggled at the back of my mind, a career, a house, some kids, a few cats, a handful of chickens (they would get along with the cats just fine), that plan doesn’t exist anymore. It is not even possible. I mean, Piper would never tolerate a chicken. During the days of liberation it feels like there are no expectations of me, like the only thing I have to worry about is being on the good side of statistics, the statistics I can participate in, but cannot control. It is odd to have these contrasting days. I would say that there is a strong correlation between how I am feeling physically and how I am feeling emotionally. So is the glass half empty or half full to me? Well, unless we are talking about a beer jar, I really do not give a damn.         

Bye bye bike

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

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

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

The remains of a bike

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

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

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

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

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

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