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.

    

Mushy peas

I know I promised this post would be more positive than the last. I am afraid I cannot keep

that promise. This post is again selfish. It is for me to vent, to dwell, to wallow in my own self pity. I am writing this to get the words out of my head. And my brain remains as mushed as a side of peas, so none of this is likely to make any sense. Continue at your own risk.

When I presented at Wellington Hospital in November with my crooked tongue, I was required to switch steroids. My steroid of choice is Prednisone. I’ve grown fond of it over the past year, and the dosage I was on (15mg) gave me all the Prednisone-goodness, without too many side-effects. I will complicate things here and say that because I am on immunotherapy, I ought not to be on steroids at all. Zero steroids is the aim, but well, they’re just so darn helpful. So roid me up. Anyway, presenting to a hospital with neurological symptoms gets the doctors a little nervous, so they switched me to Dexamethasone. Apparently Dex is like the go to steroid for reducing brain inflammation. Apparently I had brain inflammation. The neurological symptoms also meant that my nice low steroid dose was about to be upped. And boy did they up it. I am really quite susceptible to steroids, and my consultant knows that, but he was away and so they just prescribed the highest dose available, which is the equivalent to 100mg. I’m tweeked out at 60mg; at 100mg, my goodness.

Sleep was off the agenda. Food became a major focus. Then it became an obsession. It was exhausting. It started out fun; a little like ‘yay I can eat whatever I want, whenever I want, almost unreasonably.’ Then the ‘almost’ was dropped and it became simply ‘unreasonable’. I was knocking back six or seven meals a day, with snacks. I became fixated on food. I was lying on the couch, overfull, bloated, yet obsessing over the ice cream I knew was in the freezer. If I eat that ice cream I am going to feel terrible. But I want the icecream. I know, I will have just a small serving of ice cream. That will work. But our bowls are so big, and it was boysenberry ice cream, so I ended up with three scoops. One morning, I consumed an entire packet of TimTams in ten minutes. That is less than a minute a biscuit. I was going to dip them in my coffee, but there just wasn’t enough time to brew the coffee. No time for coffee! That was after my four AM cream cheese bagel. Let us just say that it was an expensive few of weeks. Now I can’t remember if we’ve got snacks in the house, and even if we did, I can’t taste anything except Habenero sauce (another radiotherapy side effect). Thankfully, the steroid dose has dropped, and my food fixation has passed.  

Unfortunately, three weeks of binge eating really plays havoc on one's weight. My face is round and puffy, like a partially deflated beach ball that has spent too many summers outside. I’ve lost almost all my hair. This, again, is due to the radiotherapy. It causes hair loss at the targeted site, and because my whole head was targeted, I got to lose it all. It fell out one afternoon while the cat sat on my knee. She finally got her comeuppance. Some stubborn patches of hair remain, which is uber attractive. Plus I have some wicked acne, perhaps caused by all the junk food. I am looking gorgeous for summer. But don’t worry, I did spend like an entire hour deliberating an eyebrow wax. I decided no. Nobody is looking at my eyebrows.    

That just leaves the brain mush. The fatigue. My brain is so slow. It is too slow for everyday life. Everything has become so difficult. It is like 90% of the batteries that provide my mental energy are exhausted, so I am running on just a tiny energy store, and I can only give a minute portion to any task. I sit at a cafe, and a sharing plate comes out. Ciabatta and balsamic and dukkah. Simply eating requires considered effort. My deliberate thought process is thus: OK so person A has finished reaching for the bread, and person B is reaching for the dukkah, so I can reach now, I need to move my arm straight out and take the bread without bumping anyone and now I need to stretch to the balsamic and, opps, balsamic was thicker than I thought and I have spilled it, and oh oh my hand is shaking, no that’s ok, it has steadied, right so the bread is in my outstretched arm, so I need to bring my arm towards me and lift my hand to my mouth. Ah fuck, I just dropped everything on my white top. It required immense energy and mental thought to reach for some bread, and then I messed it up. Which is fine, if I can laugh at myself, but it is extremely frustrating and sometimes I cry. In public.  

My personal deficiencies are amplified in my current state; things that I have never been good at I simply cannot do. I've never been good in social situations. It takes a lot of background effort for me to know what is socially appropriate. When to talk about certain issues, where to stand so that it doesn’t impact on others, how to sit at a dinner table; all this requires quite a bit of thought from me. And often, even before this brain mush, I'll catch myself doing something antisocial, like putting my finger in my ear. Now, I cannot do two things at once so if I am listening to somebody, I can only think about what they are saying. I cannot think about my posture, or my elbows on the table. I cannot eat, or even contribute to the conversation. My verbal communication was always poor, now it is pretty much absent. I am unable to formulate responses fast enough for society. Basically, guys, I can no longer rant. I can no longer listen to a rant, I can no longer contribute to a rant. My brain is too slow. For three weeks I could not concentrate enough read. Writing, fine, I have a lot of internal dialogue, background brain noise if you will, so I can pen my own jumbled thoughts. But reading was pretty much impossible. I had pretty much lost my brain.

There have been instances where I could not communicate at all. I forgot how to form the words. These instances were short-lived, only a few minutes at a time, but I’ll confess that I panicked. A quickening of breath, more tears. All I wanted to say to those around me was that I couldn’t think, but I didn’t want anything and I was happy and grateful that they were helping me. Instead, I hyperventilated and cried. I was finding life amazing, but I relied on others to think for me, to fully care for me, and I felt I couldn't communicate with them. This was more than merely accepting that I needed to ask for things, I actually had to think to ask for things. And then I couldn’t remember that I was required to ask. Does that make any sense?

It turns out I had a pretty good memory. It turns out I relied on my memory to exist. Once I lost my ability to remember, to tell the time, to do math in my head, I became aware of how others think. Because they were thinking for me, I began to understand their thought processes. During a public meltdown involving an op-shop Xmas tree and three decisions, I received a moment of true empathy from a stranger. She looked at me with raw sympathy and said “Oh, you’re really tired aren’t you? I get that way sometimes. Here, sit down.” There is a difference, you see, between understanding and empathising. Up until now I'm not sure that I have ever empathised. I mean, I would get sad if someone else was sad, and I would be sad for somebody, but I never really stopped and took a moment to get inside their mind. I have become aware of how intolerant I was, how particular I was, and how I never tried to understand let alone empathise. I am lucky that I now realise this, and that I have the opportunity to change. I need to maintain this compassion. Feel free to remind me that. And if you see somebody dithering in the street, or faffing (I can’t tell the time so I have become a faffer), it is probably because they cannot remember, or because the world around them seems a little too fast.

How am I coping? Well, to be honest, for the first couple of weeks I wasn’t. I spent a lot of time worrying that I would forget something, or worrying that I would be unable to do a task, a walk, a social outing. But, after some inspiring words from Mike, I have learned to adjust. My brain is slow, yet I was trying to live as if it functioned normally. I was asking those around me to slow down, but I needed to slow down myself. It all amounts to effort. I can remember, it just requires a bit more effort. I can communicate, I just need to think, think real hard, before I speak. I can cook dinner, it just takes a little longer and requires a bit more planning. It is very easy to rely on others, to submit, but if I do that then my memory will get worse, and I will become lazy. Effort is the key. Increased effort brings increased reward. I’m beginning to understand that it is permissible to forget; a grocery, a day, a thought. That is acceptable to fail; the reaction to the failure is more important than the failure itself. I am so fortunate that I have had an opportunity to slow down, to experience what it is like to live with a poor memory, with poor concentration. To understand how difficult a large portion of society must find everyday life. Mike and our families have been amazing through this period; my revelation has come at their cost. I guess all I can do for them is to maintain this tolerance and relaxed attitude. Because my brain function is returning, the loss is only temporary, the worst has past. Others do not get that luxury. Let us hope that I can remember this experience.        

Oh, and just a little bit of science for those interested. What I now have is termed central nervous system (CNS) lymphoma. It is rare in Hodgkin’s patients, and different to primary CNS lymphoma because it did not start in the brain. The haematology team speculate that the cancerous Hodgkin’s cells have invaded the CNS via the bone, thus avoiding the blood brain barrier. The brain and nervous system have a protective barrier separating themselves from the blood. This barrier is pretty selective as to what it allows across. Most medications aren't permitted, nor my pesky Hodgkin's cells. It is also why meningitis is so bad; the immune cells can't get into the CNS to fight the infection. My cancerous cells were pretty much like El Chapo Guzmán tunneling under a Mexican prison wall. Fun times.  

Trees, Sepsis, Hair loss

Friends! I have an update on the faux Christmas tree. Two months prior to Christmas the tree has been removed from the naughty corner, replaced by a non-descript pot-plant with glossy green leaves. The Orwellian in me wishes it to be an aspidistra, however, I really cannot be certain. I am unsure what the fake Christmas tree has done to redeem itself. Perhaps it is merely a ruse. Perhaps they will present the tree again in December in an attempt to fool us guests, pretend they have made a Yuletide effort when really they had forgotten it for ten or so months. However, I shall not be fooled by their guise, as I will still be here in December. I will endeavour to keep you updated on this faux tree’s fate. Until then we are left with this non-descript pot-plant, a pot-plant that is really too tall to be an aspidistra, destroying all irony I was intending.  Perhaps I am reading too much into this situation and the real reason the tree was removed is because they, whoever “they” are, read my blog. I mean, all the cool kids read it, right?

One Friday night recently, when the fake Christmas tree remained in a position familiar to me, I had a rather memorable dream. It did not involve the tree. The slumber on the particular Friday night in question was induced by a magic pill. I had experienced consecutive sleepless nights and in order to prevent a deformed second head from rising through my neck bling, roaring with a bitchiness only ever induced by lack of sleep, yes to prevent this highly probable event from occurring, a magic pill was consumed and thus the dream followed. I will warn you now; the dream is not that spectacular. There will be no civil rights movements, or anything of the like, resulting from its documentation. It was merely a vivid dream. A vivid dream I intend on telling you about. Eventually. Just a bit of background information before we begin: when I rigor I am usually running a temperature so although I feel extremely cold I am actually burning up. This means I am usually prevented by the powers-that-be from warming myself up. No hats nor blankets nor hot water bottles, indeed sometimes they place cold flannels and iced water on me instead despite my persistent protestations.

So it was a Friday night (I think), I was drugged (voluntarily), I was asleep (possibly), and I began to feel cold. In my dream I was cold, shivering in fact. Now Dream Liv is a pretty smart cookie. She realised that those surrounding her, which at this point in the dream were her husband and a bunch of nurses, would not take kindly to this shivering. She knew these individuals would try to admit her into hospital, a place that neither her, nor Reality Liv, wished to be. Dream Liv needed to conceal this shivering and hopefully warm herself up in the process. What better way to do that than to dive further under the covers? This would provide warmth and was not at all conspicuous. Dream Liv even congratulated herself, cackling away at her perceived ingenuity. The nurses with needles could not find her, the ambulance had crashed, her husband was talking to her, louder, louder, shaking her; oh crap Reality Mike had cottoned on to Dream Liv’s antics and was attempting to summon Reality Liv who, in a Zopiclone laced fever, simply ceased to exist. “This thing [thermometer] is beeping at me!” cries Limbo Liv “What is it doing?” Get the beeping away from me!” Reality Liv eventually emerged around 10am, frozen in a pool of her own sweat. This was the third time I had had a hospital dream. The previous two had landed me in hospital. My sub-conscience was more alert than I.

I had not experienced a rigor episode since I began chemo so this incident took us a little by surprise. My head felt over-inflated all day, as if all my blood had been forced into my brain and I now resembled Mr Mackie. Further rigors, persistently raised temperatures (the thermometer and I had reconciled), and numerous nonsensical statements lead to a Saturday night ED visit. I knew it was a Saturday, but had forgotten that Friday was the day prior. I kept informing the clinicians of my blood results “from Friday”. I felt as though a week had passed when it had merely been 36 hours. Upon my VIP entry to ED my heart rate was 165, temperature 39°C, and all my lymph nodes were inflamed. My spleen hurt. My spleen and I have had a decent relationship these past few months and I was upset that this relationship was once again strained.

Ultimately, I was petrified that the fevers, rigors, sweats, nodes, and delirium were due to my disease. I had felt far too well post chemo, it was quite obvious to Fever Liv that the chemo had not worked at all. My lymphatic tumours were fighting back, punishing me for my continuing insubordination. But apparently no, these fevers differed from my disease fevers, I actually had neutropenic sepsis. I am unsure how many people are relieved to hear such news but I can tell you that I certainly was. Prompt IV antibiotics and fluids reduced my confusion but did not induce any sleep; I spent the night in my private ED room listening to the fallout from a high school ball. Sunday morning, mid-rigor with my face burning, nausea overcame me. It was not pretty. I vomited through my hands, on myself, on my bedding; vomit smeared across my shivering face I was desperate for a receptacle to make the situation a little more dignified. Eventually I spied my water jug and proceeded to fill it with my stomach contents, my teeth chattering throughout. To be quite honest I felt dreadful. Utterly dreadful. Upon discharge, some five nights later, I read that I was deemed ‘well’ in ED. If I was well, I do not ever wish to be deemed unwell. My septic episode was mild in comparison to the many others on the ward combating the same thing.

Scaring all the adults with my neck bling

I do not have that much hair anymore. The day I was discharged I spent $40 on a bad haircut. Two days later my hair started falling out. In clumps. One morning I woke to find a substantial volume beside me on my pillow. In the twisted irony that currently seems to be dominating my life, it appears I am allergic to my own hair. Not anaphylactic allergic, more rub-your-eyes-constantly allergic. Irritated is probably a more apt word. The next morning left me looking like a soccer ball that had been left outside the entire winter; dirty and slightly waterlogged, the leather sagging to leave distorted white and black patches. I had lost a third of my hair in one day; a number one was necessary. The day Mike shaved my head I was required to shave my legs, but not for the same reason. And I still have eyebrows as bushy as Bert’s. Eyebrows appear to be stubborn beasts. How do I look now? Well, now I look like a cancer patient who has recently lost all their hair, but none of their eyebrows. I look silly really, very silly indeed. In fact, I have taken a break from practising head scarf knots in order to write this. After two hours of practice, frustration, and tantrums, I think I will just opt for a skullcap. Finesse is not really in my repertoire.

So my hair fell completely over three days. With ABVD it took six months and even then I was never entirely bald. I caught an unknown infection that hospitalised me after my first cycle of ICE, yet my neutrophils were only low for a few days and I had been vigilant with diet and hygiene. With ABVD I was a little more adventurous, had lower counts for longer, yet I was never unwell. On the plus side, my mouth is ulcer free and my throat is still co-operating. Other than the hair loss and the sepsis, I have had few side effects. Except, of course, fatigue. I have instigated pre-bedtime naps, on top of my post-breakfast naps and my siestas. Yes, the fatigue is strong in this one.       

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.          

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.