A smooth journey

I have chanced upon a tiny opportunity to write. It is frantic over the holiday season what with social engagements, gorgeous weather, summer events; it is difficult to find the time and solitude required for writing. Most spare time I have is dedicated to sleeping. But I have some time now, to write, and I will seize it. All fingers on the keyboard.

But what to write about. It is not that I am short on material. Ideas flutter restlessly inside my head, and I swing my white net in an aimless attempt to catch one, just one. The thoughts are there, but are they appropriate? What do you, my loyal fans, wish to read about? What would help others in similar situations? I have been hit, once again, with an urge to make this blog useful. However, full disclosure will plunge you into some rather personal and intimate experiences that, frankly, I do not believe you wish to learn about. And any poor stranger who Google stumbles upon this blog is bound to despise its style, instantly hitting the little x of doom, never finding their way to the juicy content. This leaves me with a hole, a content hole. I cannot figure out how to write a post of substance without oversharing. I want to write a post that will help a stranger. I guess we, in New Zealand at least, are still in holiday mode; a relaxed post may be more appropriate than my usual doom and gloom. Ok, it is decided. I will set down my glass of Ural and cranberry (my drink of choice since Christmas Eve), and resort, much like the media, to triviality. I am going to document my hair loss.

I thought I had already written this post. I know the issue has been on my mind a bit. But a cringeworthy flick through my black book produces little documentation on the issue. I also noted, with a tinge of shame, that I have never posted a picture of myself bald. This was not consciously intended and it bothers me that it has happened. I shall make up for absence in this post, be rest assured. Earlier, I alluded to hair loss as a trivial issue. If you take the entire cancer picture, it does seem like a mere pixel. Yet it is odd, when grappling with a cancer diagnosis the first issue that springs to mind is hair loss. I think the issue trumps prognosis. It was certainly one of the first thoughts that flicked through my mind. I even discussed it with my ward-mate. A week after her first chemo round, she was beginning to lose her hair. We both agreed to chop ours off as soon as we were released. I mean discharged. I wonder, why the focus on hair loss? For some, I imagine, it is the only aspect of cancer they are aware of. Cancer = bald. This is a misconception. Not all cancer patients require chemotherapy, not all chemotherapy drugs cause hair loss, and radiotherapy can cause hair loss at the targeted site. Cancer may = bald, but not necessarily. Perhaps the concern has to do with control. By cutting off my hair I was proving to my body, to my life, that I still had an element of control over it, albeit fleeting. I could dictate, at least, how my hair would fall out. A similar effect happens with diets. Many patients I’ve met, and their families, focus heavily on their diet once diagnosed. Food intake is one of the few things they can control. Many patients receive nutribullets as gifts.

I never had a good relationship with my hair. It was explosive, unruly, neither straight nor curly, just frizz and booff. I am not patient when it comes to hair. Lazy, really. Hairstyling was not worth the effort because the outcome was never successful. However, I was always afraid to cut it short. This fear stems from my childhood; I always had long hair, I was encouraged to keep it long. There were even rules regarding hair length. Cutting my hair was the first of many releases I have experienced since being diagnosed. It looked infinitely better short and required minimal daily maintenance. I wish I had done it years ago. And now when I look back, it seems a ridiculous thing to have been afraid of.

Every drug interacts with every patient differently. There is little the medical teams can do to predict how I will respond to a particular drug, and how Mary down the corridor will respond. The only way they can do so is by using statistics. You see these stats in the drug inserts; 1 in 10 patients will experience nausea, 1 in 100000 will turn into the Incredible Hulk. When it came to ABVD chemotherapy and hair loss, all the med team could offer me was a shrug. I may lose it, I may not. My experience with ABVD was a gradual loss. I was a moulting domestic animal, without any hair regrowth. The decision to cut my hair short was again ratified; shedding long hair would have been cleaning nightmare. As it was my discarded hair was all through the flat, interwoven with my clothes, the couch, the carpet; but at least not the shower drain. I had six months of ABVD, after five months my hair was thin, patchy, and my animal resemblance had switched from domesticated to mangey. One sunny July afternoon, part in panic, but also because I saw no other option, I paid 10 quid at a High Street walk-in-salon for a number three cut. It was an awkward experience. The stylist kept asking how short I normally have it. I kept replying that I had never shaved my head before, my hair had fallen out, I wasn’t rocking this patchwork design by choice. She asked again how short I normally shaved it. The number three was too long, she re-did it for me as short as she could. I was left with stubble, more like a movie prisoner than a cancer patient. Afterwards, in a burst of consumerism, I bought a bikini. Perhaps I was proving my womanhood.

  

The regrowth was almost worth the loss. It grew back fair, soft and downy much like it was during my infancy. People, not always acquaintances, would rub their hands through my luxurious stubble. The rate of growth was much like the rate of loss; gradual hair thickening, rather than constant regrowth. It was two months before I required a trim, three before I needed a full cut. All in all, I felt the regrowth post ABVD to be successful. My hair was easy to style, a pleasant hue, and not too thick. But, of course, I was destined to lose it all again.

When I began ICE chemotherapy there was more certainty in regards to hair loss. I was probably going to lose my hair. In medical speech, ‘probably’ translates to “about 95% chance”. I used the term ‘probable’ often when reporting blood films. No one can ever be certain. So I was going to lose my hair again with ICE, but when I would lose it, well, they couldn’t really say. Two weeks after my first dose I ran my hand across my head, a nervous habit I have, and it emerged with a fistful of hair. That evening, using my father-in-law's clippers, we shaved it right back. Two days later my head was smooth and shiny, just in time for summer. In contrast to the slow gradual decline of ABVD, the ICE hair loss was rapid and complete. Tidy, one may say, no loose ends.

The silky smoothness of ICE

The hair loss was uniform, and it grew back in a uniform manner. But the regrowth was not the same as it was ABVD. This time my hair returned dark, thick, and in some places, curly. Did I mention think? And explosive, especially in humidity. Apparently hair can still be explosive when it is short. It took about six weeks from the end of treatment before I needed my first haircut. I did not lose my hair with Brentuximab, nor with immunotherapy. For nine months I lived with a full head of hair, washing and trimming, like most women my age. My hair remained unruly, until it was time to lose it again.

I was lying upon the radiotherapy bed, amid brain malfunctions, lasers, and millimetre movements, when the consultant came in and ran her hand gently through my hair. A sympathetic “you’ll lose all your hair again” was met with a grunt of indifference. I had lost it twice already, I would not care if I lost it again. This time, however, I was much more concerned about my baldness. Radiotherapy hair loss was much like that of ICE. About a week after my first session, my hair started to fall out in clumps. Although my hair was short, it was dense, and there was too much of it to allow it to fall out ‘naturally’. Mike ran his clippers through, a number four. That evening we realised that four wasn’t short enough; there was still too much shedding hair, all course and irritating. We shaved it back as short as we could, then let the stubble fall out as is pleased, occasionally polishing my skull like a bowling ball. Patches of stubborn stubble remained, and for a while I looked a little ridiculous. I don’t know that I look any better now, I think I have just stopped caring as much. Radiotherapy hair loss is impractical. Chemotherapy hair loss is indiscriminate; yes I may have a bald head but at least I do not have to shave my legs. With radiotherapy, the hair loss is precise. So precise, that not only is leg shaving required, but also neck shaving. There is a small patch of fluff that did not fall within the radiotherapy field. If I don’t shave it I look like I am morphing into my wolf form. It has been two months since my radiotherapy and, if I close my eyes as I rub my skull, thinking neato thoughts, I can kind of imagine some stubble. I am aware that I may never have hair again. 

Brain radiotherapy hair loss

This time the hair loss was emotional, I think in part because my brain was mush and everything was a bit emotional, but also because it announced to the world my true identity again. I have been unmasked. I have lost my superhero disguise. One glance and, assuming my gender has been correctly determined, anyone can quickly sum up my situation. Baldness actually offers more protection in public. People are more patient, more considerate, however, I always feel more vulnerable. I bumbled along earlier about hair loss and control. Although control may play a minor role, the reason I focused on losing my hair was because it would be the most obvious change. To keep one's hair is to maintain one shred of normality, because the rest of your life has exploded. And, in my case, will never be the same. I know I cannot speak on behalf of men in regards to hair loss. My automatic assumption was that it would bother them less than it would a woman. Society, I thought, is more tolerant of a bald male. Most of the men I met in the wards were bald before their treatment. However some weren’t, and I was surprised when a few mentioned their distress at losing their hair. I guess for some men baldness is an everyday anxiety now brought to life. For me, baldness wasn’t ever something I needed to worry or think about.

But you know Liv, you can get a wig. Ah yes, wigs, an interesting concept. Both Britain and New Zealand offer free wig services to cancer patients. Cancer teams are quick to point this out, and rightfully so. From the outset, a wig was not for me. Despite the content of this post, I have never been hair focused. I do not enjoy styling my hair. I have always deemed hair fashion a strange social convention rather than a hobby or an interest. A wig would be difficult to manage, and I wouldn’t like to look in the mirror and see an unfamiliar image returning my gaze. Although I am bald, I still look like Liv. But I have seen patients transformed by their wigs. A young woman, perhaps twenty, was nearing the end of her chemotherapy cycles. This is a time when, mentally, things start to slip. Cumulative fatigue, infections, constant nausea; attitude cannot help but plummet. Her wigs arrived and she was a changed person. The different styles and colours revitalised her. Well, I mean, curing her cancer actually revitalised her, but the boost to her emotional state was massive, and in part due to a couple of wigs. So I am not saying that wigs are bad, I am saying they are not appropriate for me.

I am surprised how often non-medical people, people I don’t really know too well, are keen to inform me that I can get a wig. As if I had never been notified of this option, as if the thought had not been put to me. Some ask with excitement “Oh are you going to get a wig?” I do not mind that question so much, I get a chance to be a little philosophical and it is easier on both parties than talking about nausea or what have you. But others ask with a bit more force “Well, you know you can get a wig don’t you? Yes, yes, you can definitely get a wig” acting surprised when I reply that yes I do know, and no I don’t want one. Don’t get me wrong, I know the subject is difficult. I know that people do not know what to say to me. I know that there is no correct thing to say. In some ways, the wig question is flattering; it shows that someone is interested in my situation, that it is worthy of discussion. It is not their question that bugs me, it is their reaction to my answer.

I do appreciate a decent brain blurt. A blurt offers a rare opportunity to hear genuine thoughts, rather than false social pretences. It seems my wigless policy is unexpected, because often I get a brain blurt response. And sometimes, a brain blurt will show you an internal thought process you had no desire to know. “Are you getting a wig Liv?” Eager voice, leaning forward gently, excitement in their eyes, “Ah no, a wig is not really for me.” Abrupt posture pullback, “Oh….. well….. I mean, you look good bald, you’re lucky you didn’t have a giant mole or a misshapen head or something.” I do have a mole, and a weird brown stripe that runs across my head. A permanent tan line I think, from where my part sat for years. Neither of these were aspects of my baldness that bothered me. Nor was the prospect of a misshapen head. And I am sitting there, having an awkward conversation with someone I don’t really know, and I start to wonder if as a bald dying thirty-something I ought to be wearing a wig to make others feel more comfortable. I catch my reflection; no makeup, loose clothes to hide my puffy exterior, a set of gold studs to try and seem just a little feminine; my interlocutor, immaculately turned out. Do those who thoroughly groom themselves deserve more effort from me? Do they deserve a wig? Does a stray member of public who sees me one sunny afternoon deserve to be hidden from my baldness, protected on a Sunday from the horrors of the world?

No. First off, they are wrong, those who worry about misshapen heads. I have never seen a bald cancer patient who did not look beautiful. People say that I suit my baldness, but I haven’t seen anyone, man or woman, who doesn’t it. This anxiety is misguided. Secondly, too many illnesses and disabilities are hidden from society. Compassion, globally, is waning. Exposure may help. Let your children stare and point and ask honest questions, even wig related, they don’t embarrass me. Let strangers, adult strangers, ask as well. Because you do get some good questions, from complete strangers. At the beach, one woman approached me asking who had shaved me head. Did a professional do it, because her hair had begun to fall out just that morning and she wasn’t quite sure which hair removal approach was best to take. Another woman said to me “Sorry I am not staring” (she was staring) “my daughter went through cancer a few years back and seeing you reminded me of it.” These are nice comments to hear. When I was first diagnosed I found myself staring at others who had already lost their hair. I was imagining what it would be like for me. When one is staring, one is usually in thought. So in a way staring is better than the sudden drop-your-eyes-avoidance technique, a technique that is all too common.

With my wig policy now firmly established, what about hats? Well, hats are a practical issue. I have experienced baldness in both summer and winter months, thanks to our relocation across hemispheres. Not that one has a choice, but I think winter is easier for baldness. A layering of skull caps and woolly hats sufficed a Wellington winter; a New Zealand summer is a little harder to manage. It becomes too warm to wear a buff, I do not have the finesse to pull off a head scarf, and if I opt for nothing, I end up with a pink and peeling scalp. Sunburn, such a rookie error. So with buffs and woolly hats out, the only option is a sunhat. I must confess that here I am a little fussy. The first issue is size. Most hats are designed for women with hair. Most cancer patients do not have hair. I, apparently, have a small head. On more than one occasion I have been seen rushing around the children’s section of Kmart in a desperate attempt to find a bucket hat that fits. And doesn’t have glitter butterflies or monster trucks on it. No, a child’s hat is not appropriate. A straw hat would be ideal. It would protect the neck and face whilst maintaining some femininity. I have mentioned femininity a few times now, so I ought to take a moment here to elaborate. I believe this aspect of baldness is what bothered me the most. And I am annoyed that it concerns me so much. But this blog is honest and so I must openly admit that losing my femininity bothered me. I have never been overly feminine, a bit of a tom-boy, I tend to opt for comfort rather than fashion. Since I have been bald, I have put considered thought into my outfits, in order to resemble a woman. Why, I am not sure. Because it should not matter. This is an issue to ponder; a little insecurity, a little shallowness within me, that I did not realise existed. Or perhaps I did realise but had failed to admit it.

Anyway, back to the hat. A straw hat, for me, was the ideal choice. Protects the neck, the face, and it looks pretty. Just go out a buy a straw hat. Ah, but it is not that simple. I have already mentioned size; most are too large for the hairless. “One size fits all” my ass. And most straw hats are not lined. The straw from the hat stabs and scratches the sensitive scalp. It is too warm to wear a buff as well as a hat. Surely men have this problem too? It is really hard to find a straw hat with a lining in it. I feel there is a market here, if any hat designers happen to be reading this. Last summer, during my second baldness patch, whilst I was stressed and sulking, Mike found a hat in TradeAid. Straw, petite, attractive with a yellow cotton lining. Perfect! However, Liv left that hat in Apia during a particularly bad travel day. One of many hats Liv has left scattered around the globe. It is like my signature. If you see a stray hat on a bus, on a beach, in a bar, think of me. It is probably mine. This summer, I needed to find a hat rather quickly. Nelson is much sunnier and hotter than Wellington, I could not risk sun exposure. TradeAid did not have any in store, but fortunately online they did; not quite the same as last summer’s, but close enough. I still spent four hours wandering around town, stressed and frantic, trying to find a replacement. My advice is to go straight to TradeAid for your hat requirements.

I guess this is why I don’t write these posts too often. They tend to exceed the acceptable blog post length, and they tend to be terribly boring. I, myself, feel I ought to rub the drool stain from my chin, the mark of an impromptu nap. I know that with all the issues facing the world today, hair loss ought to seem trivial. It has become obvious after writing this post that it has affected me more than I had initially thought or admitted. And I feel bad about that.

    

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.         

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.               

Hello again

This entry has been attempted, abandoned, written, scrapped, seven or eight times over the past four weeks. I managed to complete an entire post documenting my hair loss but it never saw the light of the internet. It was just utter crap. As a side note, I am now rocking an all over number one, although I still have scruffy bald patches sporadically scattered around my scalp. I may have to maintain the number one for a while yet, to avoid the mange look. My hair loss entry was an attempt to buy some time, in order to seem a little less negative, a little less whiney. I mean I had finished chemo, I should be happy and beginning to feel healthier and looking forward to my new positive outlook on life, right? Right? So why, when I started writing, did the words, quite quickly, plunge into black pessimism? Why did I feel utterly exhausted and somewhat depressed? Granted the chemo was still in my biological system, but surely there should be a small shred of excitement at the prospect of no longer having to attend regular chemotherapy appointments, of starting to own my body again. But I felt none of this excitement or optimism. I began to feel guilty about my lack of excitement. At times the guilt bubbled over into frustration; I could not walk more than a mile without feeling irrationally tired. It would take an entire day to develop the energy required to do the dishes, although I must say that once completed the satisfaction I gained was immense.

For those of you who know my father....

These feelings created two problems when trying to write. Firstly, the content was overwhelmingly pessimistic; I felt I did not have the right to write negatively in what should be a time of celebration. Secondly, it was rather difficult to write. The words failed me, a rare event I know. Even now I am finding the words difficult. I am sitting here staring at the screen, hoping, begging, for my vocabulary to return to me. Reading has become a non-event. I am heavily reliant on plot based novels, which bothers me. I do not overly enjoy such novels. I certainly do not find them inspiring. Misogynistic post-war American novels, with faint who-dunnit’ plots and an author who mildly mocks the reader with his own perceived intelligence. That is what I have resorted to. My continued reading of these beasts is almost masochistic.  

I have started three entries in my little black book. I got sick of writing them after a paragraph or two. It is interesting that they were all attempted at times of distress, times that often produce my best work. These paragraphs were not my best work. However they do document some of my low points, points where I am weighed down by guilt. Initially, after my final chemo session but whilst the cytotoxins remained in my system, I attributed the negativity and lack of excitement to my continued physical dilapidation. The effects of chemo persisted, all the regular grievances were present, but maybe as my health improved so would my state of mind. A later entry was full of pseudo-positivity, as if in writing in a optimistic manner would convince you, my dear readers, and perhaps myself, that the future did indeed exist, it was rosy, the past year had not been in vain, I was going to get better, the chemo was worth it. But the positivity was indeed pseudo; quickly the tone of the entry changed: nausea, exhaustion, hopelessness, fear, these started to creep in. Every aspect of my life was (is, maybe) taken with complete seriousness, I had (or have) a fear that I would never return to my former self. My sense of humour had been lost forever and I would continue a bitter woman for the remainder of my days.

Exhaustion became a truth serum. I lost that ability to critically evaluate what I had to say before I said it. I was not rude, but I could not hide my emotions, nor my fatigue. This was not restricted to mere words, facial expressions were also uncontrollable. I failed an occupational health meeting. I admitted my ongoing fatigue, my relatively despondent view of the world and my persisting gum infection to a complete stranger, who, correctly, decided I was not well enough to return to work. I did not hide my disappointment well. This was a couple weeks back, a Thursday. The majority of the chemotherapy side effects should have subsided and I ought to have been feeling better. But I was not. I was exhausted. My back hurt. I was cold. It was only 30°C outside so of course it was completely rational for me to be feeling cold. Friday; a train ride to Penzance to visit family. Again I was feeling cold and pessimistic. Sitting for most of the day did little to relieve the back pain. Saturday; I forced myself to attempt a small walk, my back was aching as I walked downhill and on the flat, but not uphill. It must be muscular. I need to stretch more. That night I turned down a glass of wine. The back pain started radiating towards my abdomen. I was concurrently feeling both cold and hot. Sunday; a car ride around South Cornwall. The back pain was becoming intolerable. A small jaunt to see the beauty of the western coastline was worth it, but upon arrival exhaustion required me to slump against a rock, wearing two windbreakers, as the others continued along the clifftop towards the better views. I was an invalid in a wild-west movie, surrendering to the perils of nature. Once back in the car I felt cold again, the shivers came on, the chat-chat-chatter of teeth began like the slow start of rain on an iron roof. And so the periodic shakes set in. Two hours of normality, two hours of cold rigors, two hours of uncontrollable sweating. Repeat. A two a.m. shower was required in an attempt to warm me up. It did not work. I must suffer the obligatory two hours before the cold will pass and I am greeted with too much warmth. The gym shirts were back out for the periods of sweating. The cold came on slowly, creeping over my limbs like the dark haze of evil present in most 1990’s Disney movies. Or maybe a Tim Burton movie. Probably a more apt analogy given my state of mind.

Slumped against a rock

Mike and I had spent the majority of our seven hour train journey back to Brighton discussing the prospects of refractory lymphoma, and other possible explanations for the shivers. Perhaps I was suffering withdrawals from the chemo. Perhaps my body was having difficulties re-establishing itself, like one trying to relearn the piano, initially hitting the wrong keys but eventually remembering the correct tune. Were the cold spells caused by my recent bald head? A little peruse of the Macmillan forums revealed a small few who had suffered similar symptoms. Ah, so maybe this is to be expected. Somebody had commented that women have issues with temperature control whilst their hormones regain regularity. Early menopause was also mentioned. Maybe I was just getting a cold or something. A day of rest would do me good.

Monday night, immensely thankful to be back in my own bed, I slept on a towel. Never forget to bring a towel. Such important advice. It is amazing how quickly one can fall back into old habits. We had the towel, midnight shirt change and the five hour paracetamol, lined up beside the bed, ready for when each would be needed. Tuesday I felt no better. In fact I felt worse. Dreadful, I felt dreadful. This could not be deemed a ‘normal’ response to the end of chemo. If it was then I could not go on. I had not felt this bad since before chemo. No, this cannot be a right. Something is wrong. I should take my temperature. Blah, the disposable thermometer has broken and now I can taste the dye in my mouth. Yucky. Best try again. Blah. Must be a faulty batch. I will try my less than accurate digital thermometer. 39.9°C, oh maybe the disposable thermometers were breaking because my temperature exceeded their analytical capabilities. You would think that at this point I would have gone straight to A&E, which is what Mike wanted to do. But to be honest I felt too crappy to go. It was 10pm at night, I did not wish to be admitted, I wanted crawl into my own bed with my blue towel, and so that is what I did. I knew I would not be neutropenic and I knew I was not septic.

The hospital visit came the next day. Mike had phoned ahead so I received VIP treatment; queue jumping - a benefit of being a chemotherapy patient. I was placed in my own little room and pumped with IV antibiotics. My veins have been destroyed by the dacarbazine. It took four attempts and a little bit of tissue leakage to get the cannula in. The phlebotomists require the little needles now. It is a pity my PICC line had been removed. I can only assume that I have lovely bacteria free muscles in my forearm now given the amount of antibiotic that missed my veins.   

My temperature rose, my heart rate was around the 115 mark, my blood pressure dropped and I spent four nights in hospital, in three separate wards. At one point I was back in the cancer bunker, in the same bed I occupied seven months ago during my diagnosis. Lying there, staring up at the tiny windows, completing a journey only to end up in exactly the same spot. Eventually I was transferred to the haematology ward where I was by far the healthiest and youngest patient. The youngest by about thirty five years. Two patients received their diagnosis whilst I was there and I had to suppress all urges to get up and draw biological diagrams for them. I think most people just wish to receive their treatment and have little interest in what their body is doing, or where it has gone wrong, or how cool their cells look on a blood film. I think most patients do not develop an unhealthy excitement when given a print out of their CRP levels for the year, nor do they instantly wish to graph these figures and request further data for analysis.

The official diagnosis was pyelonephritis, although no one is quite sure if this was actually the case. The diagnostic evidence was disjointed. It is somewhat academic as to where the infection was as the treatment regime is the same. The back pain still faintly persists. My CRP printout revealed I have probably had a smouldering infection since April. The cessation my regular prophylactic antibiotics allowed the bacteria to develop and my neutrophils, although at a reasonable level, are not functioning correctly (due to the chemo) so my body required external aid in defeating the infection. I am now on prophylaxis for a further three months. My CRP is returning to normal and my night sweats are no longer. Hopefully the slowly developing infection was the cause of my exhaustion, negativity and general unpleasantness. Hopefully it will be rainbows and internet kittens from here on out.

There are some positives from this experience. It forced Mike and I to discuss the possibility of me not being in remission. In all my negativity and despondency I had never really considered the prospect of the lymphoma remaining after treatment. I have read the scientific literature, it would be highly unlikely, and although I am not looking forward to the PET scan (which is tomorrow) on a physical level, I was not at all concerned about the result. Not until I started getting periodic sweats. This little infection also reminded me, and I think Mike, that although chemo is finished, I am not going to be returning to full health for a wee while yet. This is a frustrating admission. I had hoped I would feel nothing but better from here on out, but this will not be the case. I will not be walking the Norwegian fjords in August, the Greek gorges in September, kayaking the Adriatic in October, tramping parts of the Camino de Santiago in November. I will not be living my entire life in the next four months. Returning to full health is a daunting prospect. I need to get fit again. Never in my life have I been this unfit. I am relieved that the back pain was not due to physical inactivity, however a kidney infection does not explain the tightness in my hamstrings, calves and Achilles, nor the weakness of my shoulders, arms or core. A haemoglobin in the eighties may, however, explain my breathlessness.

And so that almost summarises the past four weeks. I guess other news of note is that I have resigned from work. For any of you out there who were thinking ‘god Liv, don’t quit your day job’ but were too polite to say as much, well too late! I had always aimed to retire by thirty. Does being unemployed count as retirement? Oh I have just refrained from making a rather cynical political statement here, please be grateful for my efforts.          

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.

My final ABVD complaints. Hopefully.

I apologise for any grammatical or spelling errors in this post. It became a 'now' post halfway through, and as you will see, my editorial skills have been somewhat hampered this evening. I wish to give you advance warning of this. Feel free to comment on any obvious mistakes, I will endeavour to update them. I would say 'enjoy the entry', but I fear that you will not.

As my diagnosis currently stands yesterday was my second to last chemo day. Occasionally, the excitement of this overwhelms me, images of a late September swim in the charmingly blue seas of Mediterranean or the Adriatic, or both, swell up inside me. A rare and jilted smile appears, showing my chlorhexidine yellowed teeth. Today, however, I am not going to give in to that excitement. I will leave it for another day, another post. Although I am not in an overly moaning mood, Dante is trapped in a wall of ice, I feel there are issues I need to address. I often find myself consulting Dr Google with side effects; new biological developments are still occurring although I am six months into my fortnightly treatment. Often Dr Google refers me to other’s blogs, where fellow patients have addressed my concerns.  I feel this post ought to achieve a similar goal, even if only one person benefits from it. This will delve into the depths of personal discomfort that in normal social situations simply should not be referred to, and I must admit that I will not reveal all. I do have an ounce of social awareness in this head of mine. Do not fear, I will warn you before things become biologically personal, allow you to skip certain paragraphs should you choose.

I must confess, I am resisting the urge to launch into various top ten lists; ‘Top ten things Liv is looking forward to post cancer’ ‘Top ten tips for Hodgkin’s Disease patients.’ I mean, I whored myself out to the internet when I posted a picture of a cat on my blog, why not continue this prostitution with a variety of top five or top ten lists? Watch this space.  Another temptation I am resisting is to cry out, loudly, from my balcony to the fresh blue sky ‘My tummy hurts!’ This urge is harder to suppress. Instead, I screw up my face, lifting my top lip to the base of my red nose in an entirely unattractive expression of pain, much like Sloth fit only for the basement not the balcony, and wait for these stomach pangs to subside. Not an overly productive approach, I will give you that, but it seems the only bearable one. I am not really in a self-pitying mood, more an oversensitive Paul Morel mood, so it shall be interesting to see how these previously undocumented physical qualms manifest themselves in words. I would more gladly be addressing the doom and gloom that is the state of modern politics, the varying possibilities of my future, and how to solve world hunger. These topics, at least, would leave me with a sense of middleclass white girl angst and sufficient inspiration to write something coherent. But then I run the risk of getting all Steppenwolf again. And I have no answers to these unrhetorical, somewhat pressing questions. My brain turns into the sort of Spirograph I produced as a child; my limited artistic abilities forming indefinite shaky lines, a clash of colours and scribbles with no discernible beginning or end. My lack of patience may also contribute to this mess, both then and now. Oh but I am sure you do not wish hear about that. It is physical issues I have promised, not psychological ones.

For any reading this who are yet to begin chemotherapy, you may be feeling frustrated at the lack of mental preparation the experts are offering you. This was certainly something I felt. I cannot recall how often I was told ‘Every patient has different experiences’ or ‘Everyone tolerates [tolerate would not be my word selection] chemotherapy differently.’ Even down to hair loss, each individual experiences different effects. They cannot promise you anything, so are reluctant to do so. I understand this now, but at the time, when I was facing a world of unknowns, my life plan becoming a six month plan, not even six months, just each fortnight one at a time, well it is difficult to be told ‘we cannot prepare you for what is to come’. 

For example dacarbazine, that wicked drug, it hurts. It does not hurt for everyone, but for me the pain was excruciating. You all know this, you have tolerated [a more apt use of the word] my previous complaints about dacarbazine, over and over again. Now I look back on the arm pain, which barely exists since the insertion of my PICC line, and think that it was the only consistency in my treatment symptoms. It is not only the professionals who cannot predict what you may experience, but you cannot either. There is intra-patient variation as well as inter-patient. Personally, the only regular occurrence in my treatment regime are the emotional tears produced an hour or so before we are due to leave the house, and my bus ride solemnity. Any Brighton and Hove bus driver who happens upon the number one route every second Tuesday will probably assume I have the moodiness of a fourteen year old girl. Maybe they are correct. I was aghast yesterday when the CNS effects of the vinblastine re-established themselves; that awkward squidging in my oversized brown chemo char, the facial tingling; I haven’t felt that for a while. So why now? It makes little sense. I do not care for this unpredictability.

I am procrastinating. Even I, with my crass mind and illogical sense of humour, cannot bring myself to delve into what I promised earlier. This may be the paragraph that finally snaps that thin thread of dignity I have been clinging to. This may also be one that some may choose to skip. Assuming any readers are remaining. I have alluded to (piff alluded, I believe I flat out announced) the culmination of various medications, cytotoxins and destruction of mucosae resulted in the bowel movements of a newly breastfeeding woman; well try six months of that situation. Despite using the prescribed laxative juice sachets, startling imagery perhaps, but Laxido is not really that bad. The constipation could be deemed another secure, regular symptom, as could the haemorrhoids that eventuate from that sad state of affairs. I finally understand why one is told not to sit on hard solid surfaces. No one should ever need to reach for an impromptu gag before attending the bathroom. A rather awkward situation when your in-laws are in the adjoining room, I can assure you. Or, should you happen to be at work with no impromptu gag, just the corner of your salmon cardigan. April, with a lingering UTI, I was near to developing a form of toilet phobia; more from fear of pain, noise and the eternity each movement took, rather than genuine parcopresis or pauresis. Enough already! Please be assured, that paragraph was as difficult to write as I perceive it will be to read. 

Shall I move on? To what? Upper digestive complaints? The nervousness to which I consume each meal, unsure if it will stay down or send me hurtling towards the nearest drain opening? Follicular irritation; everywhere. Not lymph node follicular, although with a little research I could probably drum up something there also, but ingrown hairs, on my scalp to anatomically name one victim, my hampered immune response unable to deal with these annoyances appropriately, and so all that remain are unattractive, concerning, painful little bumps. In a cruel twist of fate should I need to shave my head, my baldness will reveal these eyesores for the world to ogle. Ah. I can answer my pressing last meal question for you, nausea currently rising inside me, the background splenic pain intensifying, much like the quickening of a heart rate. Excuse me for a moment……

Sad face. An expected yet unexpected outcome; it never fails to shock me. Not the childhood shock you get when you realise Kermit is not actually playing the banjo in Rainbow Connection. Another Monkees scandal brewing; Kermit did the past not teach you anything? Ok, I confess, Kermit’s faux banjo skills have only recently become apparent to me. I have used childhood to describe a state of mind. Anyway, that is not the shock I speak of.  Maybe more like the shock of listening to ‘Playground in my Mind’ as an adult. Given the recent developments of 1970s pop stars that particular song takes on far differing connotations. Not that I am implying anything!!! Massive disclaimer here. It was more the shock I was trying to allude to, and an attempt at a joke. Let the internet outrage flow. The shock I am struggling to describe goes something like this: collapsing on the cold bathroom floor tiles, surrounded by my fallen hair strands, tears streaming down my cheeks, unable to collect in my eyelashes as I barely have any, my oesophageal epithelial cells indignantly offering their protestations using the art of burning pain, I myself crying in a self-pitying and therefore repulsive tone ‘why, oh why’ along with further blasphemous oaths, wondering if the reverberating sound of my greenstone pendent knocking against the toilet bowl with each heaving effort is a mocking applause or an ironic background drumroll. Argh, the nausea has not really subsided despite my physical efforts to remove it.

No amount of toothpaste can remove the lingering stale metallic taste that taints my mouth the four or five days after my chemo sessions. The chlorhexidine mouthwash does help this; although the mint flavour resembles rainwater pooled in an outside ashtray of a menthol cigarette smoker, there is at least a taste other than the one that I now correlate with nausea. Does nausea genuinely have a taste? This stale metallic one always accompanies the nausea, so, much like my aversion to chamomile after adolescent chicken pox, an irrational relationship is formed. Fortunately, my everyday diet does not include metal. I am trying to type through this current nauseous preoccupation; I confess I am struggling to do so. I do not really wish to conclude now, on this bitter note, I have more I wish to say, content other than piles, ingrown hairs and vomiting. If I finish now what shall I do for the remainder of the evening? Sit around and feel sorry for myself? Things are not really that bad, they have been worse, far worse, they are merely uncomfortable and distracting, much like my piles.

I am starting to visually resemble a cancer patient. This is ironic. I am nearly a recovering cancer patient. A couple of chemo sessions back, I left the hospital wearing a black woolly hat, to protect me from the May wind and the post-chemo coldness I have been experiencing of late. We got to the bus and I asked for two single tickets, a double take from the driver, he waves us through, ticketless. Shit. I am one of those. The phlebotomist has started calling me ‘dear’. That may have something to do with my spontaneous uncontrollable hand tremors. My naturally thick, abundant, fluffy blonde hair has fared remarkably well throughout this six month onslaught, however the bald patches are starting to show. Comments from onlookers have changed. Initially “Your hair looks great”, correct, I should have chopped it off years ago; then “You can barely notice the thinning”, well I can, as can our shower drain; now “Oh, ah, your hair is doing really well”, it is ok I am contemplating shaving it off. It is kind of a reverse mullet at present. Long on the top and short/bald at the back. A full-head comb over if you will, each remaining stubborn strand doing its part to maintain my vanity.

OK, I have gone over that past paragraph and the overall bitterness still remains. Comedy is turning awkward, nervous glances to the person beside you, a slight grimace, can I laugh at this or not? I want you to laugh, but I fear it is not as comical as I intended. Which means I do indeed need to resign for the night. I am unsure if this post counts as a ‘live blog’, although it was written in real-time (ridiculous) and published promptly, there were not the real-time modern media updates 1612: ‘Liv has rushed to the bathroom, hand covering her mouth’; it was more like a sick new reality T.V. show, intended only for your imagination. Do not get any ideas.               

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.