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.

    

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.      

  

Neurotic ramblings and a startling blog discovery

At some point throughout this pesky illness of mine, I have become rather neurotic. To those of you who have slyly raised an eyebrow or two in a somewhat sarcastic and mildly patronising manner I respond – yes, well I know I have always been a little neurotic, but now, I assure you, it is far worse. I imagine I am not the only cancer patient with this problem. Prior to starting chemo we are told of all the possible side effects, in triplicate, so our mind stays vigilant when assessing bodily qualms. In my case I suspect there is also an element of control; mind over body. The conscious has no real control over the body, but it enjoys thinking it does. It is the mother of son who has recently left the family home; she would like to think she is still in charge but realistically the young man does as he chooses. He will check in sporadically, usually only when something is amiss. And so when my body, adolescent in metaphor only, begins to throw ailments in the direction of my conscious they tend to suffer an in depth analysis; the type usually reserved by media outlets for election night exit polls. I say mind vs body, but I think I am a little wrong here. It is almost as if there are three entities, mind on one side, body on the other, then, in the middle, sits Liv, trying to mediate the eternal grievances between the two. I am the Poland of my entire entity, a battleground between two longstanding enemies, divided up by outside parties, oppressed and largely forgotten about. 

Saturday evening was particularly concerning. With the longer days, the crepuscular light of the sky made it seem earlier than it was. The neighbour’s petite tabby cat had been coming and going throughout the day so the door to the balcony was still ajar. I was getting cold. My teeth were threatening to chatter - I could feel my jaw seize in anticipation - and my few remaining strands of arm hair were standing firm and tall in their follicles.  It took the imminent teeth chatter and a slight shiver for me to realise I was cold but I noticed, strangely, that my upper thighs were both quite warm. Unknowingly, almost innately, I had been scratching away at them for a good thirty minutes. When it came to bath time, necessary to warm me up, my thighs were red, a little hot to touch and extremely itchy. I caught myself indignantly frowning at this new forming woe whilst still a scratch, scratch, scratching. The whiteness of my British winter thighs emphasised the developing flaming red pattern, making it appear like a little flashing red emergency light. In the depths of my ever exceeding gut, a little seed of anxiety was sown. What is this? Is this a GCSF reaction? A reaction to chemotherapy? Bilateral necrotising fasciitis of the thigh? Is this how DVTs clinically manifest themselves? That must be it, I haven’t exactly been physically active these last few months….  After some gentle passive-aggressive prodding and then some aggressive passive-aggressive prodding, I finally got Mike to concede that yes, this was a little odd and we’ll keep an eye on it. Score one to Liv.

A visit from our neighbour

The following morning I observed two tiny itchy bites, one on each leg. Yup, all that voluminous worry for what were small, not even mosquito, but sandfly bites. They were gone come Sunday evening. I am, at least, a little thankful that I did not immediately consult Google and add to my list of unsubstantiated concerns. I have given myself a three day threshold for unexplained biological presentations. If a complaint persists for longer than three days, it is allowed its very own Google hit. To be honest, the three day rule probably ought to be extended as symptoms seem to resolve themselves the day or so after their said Googling. But I imagine the physical act is for reassurance value only. I need to keep that conscious of mine on side.

One particular complaint that did manage to breech the three day annoyance limit, lead to a rather startling discovery. I have been getting these odd bumps on my head. They are a little itchy and tender to touch. They are most certainly not itchy bites, in case you were wondering. My hair, which once resembled the unruly mane of a lion, is still thick enough so that, with a little effort, minimal really, these bumps are not visible to any chance onlooker. But they are bothersome and troubling so I asked Google, in computer speak, “Scalp lumps pain itchy lymphoma”.  As I slowly tweaked the search terms, a persisting site kept popping up, near the top of the results list. A pain in the Neck. Maybe this individual has suffered a similar issue and has some advice for me. Click. Oh it looks like a blog. I will skim through it to see if it contains anything relevant, I mean, who wants to read an entire cancer blog? I started skim, skim, skimming; Oh Hodgkin’s Lymphoma, skim, skim, skim, lingering look, small snort at a humours sentence, complete paragraph read, gentle nodding of the head in understanding, end of post, click, next post, engrossed reading, thrusting out of the bottom lip in the way only possible when you know you have been thoroughly outdone. This blog was good; far better than I could ever dream of writing. I started reading some excerpts aloud to Mike. Evidentially he could also relate to the content – so it turns out it is not socially acceptable to palpate your lymph nodes in public, other halves do not appreciate such behaviour. Woops, my bad.  

Irritation and despondency, both quick to rise and slow to dissipate given my current state of mind and body, were rapidly on the ascent.  A McEnroe tantrum was brewing. Writing has been my one outlet these past few months, and here was someone else, an individual unknown to I, summarising exactly how I have been feeling, only they were doing it in a finer manner. I was in full on blog binge mode by now, enthralled in her charming anecdotes, her positive yet realistic outlook and her sense of humour. And there it was, two little words “Freelance writer”. Liv exhales in relief. The author’s occupation, for some ridiculous and inexplicable reason, made me feel better. There was no violent slamming of tennis rackets, no verbal abuse hurtled at umpires, no Woolf-Mansfield jealousy, there was just me, reading a stranger’s blog, at peace with the knowledge that I would never be as good as her.  

I have attempted to read other cancer blogs prior to finding A Pain in the Neck, but usually I only achieved a mere skim, skim, skimming. She has been through significantly more than I, yet she seems considerably more mindful about her experiences. When I am in a fit of frustration, blabbering on about cranial painters and their daubing of my thoughts, questioning my mortality and almost branching into the study of eschatology, she calmly and simply summarises these low points into passages and situations that I cannot convey in words. I caught myself, quite often, thinking “that is what I was trying to say!” For those of you struggling with the morbidity of some of my thoughts, her entries at similar points during our treatment regime may make things a little clearer.   

And what of my head bumps? Well, she doesn’t appear to have experienced those, but there are numerous breast cancer forums addressing the subject. The most likely cause is that my hair regrowth, in its fair fine down like way, is inflaming my fragile follicles. That ah, that was more Dr Seuss than I had anticipated. Sorry about that. I was trying to be poetic. I think I will leave it though, oh and don’t feel bad about laughing at me, the sentence was utterly absurd, even for a cancer patient.

It is with a degree of hesitation that I start this paragraph. I have a fragmented continuation of thought, as always, on the matter regarding Googling of troubles. But as it appears I am of jovial disposition today (however it has taken me five hours to realise this) and as the thought pattern involves my psyche, I think I may postpone my intended deluge of incoherent thoughts for another day. The sun is shining, the balcony is beckoning and DH Lawrence is calling.

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

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

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

Have the NHS banned selfie sticks in yet? 

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

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

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

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

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

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

I am not sure where I am going with this one

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

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

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

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

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

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