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.               

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.