Sharpening one's senses

Argh, mornings. Mornings are hard work. I am aware this statement is no grand revelation, insightful breakthrough of the mind, or epiphany; I have never liked mornings and I imagine about half of you out there would agree with me. But, currently, mornings aren’t worth getting out of bed for. Except that I am forced to. Pain has again arrived. Right sided rib and lumbar pain this time, restricting possible slumber postures to a mere two. Tactical Sevredol intake no longer seems to help; pain is winning the war on opiates. After a night locked and rigid, morphine levels diminishing, well mornings become unbearable. Pain wakes me. I rise, perhaps dress, then collapse, breathless, back upon the bed. Breakfast is impossible. Coffee, also. And I am just a dreadful person to be around. To say my fuse is short would be a gross understatement. It is morning now.

I am aware of my cantankerous nature. I work hard to bite my tongue, to try and diffuse my irrational agitation, but I tell you pain makes social interaction pretty difficult. I have no patience or tolerance or compassion, and I despise feeling this way. I preferred being brain numb and sympathetic than alert and cranky. A tourist, on a walking trail just ahead of us. My pace is that of a sloth; there is no chance that anyone will hold us up. We have nowhere to be, no reason to rush. This particular tourist, on this particular day, seemed fond of taking photos. She stopped, often, her phone in front of her face, snap, snap, snap. A sandy track through the manuka trees, a manuka tree, farmland, a cow, a stile, a stone. Snap, snap, snap each time she stopped. She never held us up. She had no impact on me, nor anyone around me, yet I was fuming. Then the pointlessness of my anger aggravated me further. I wanted to scream and cry and tantrum and rant. It requires too much energy to be angry. I can’t go wasting energy on minor incidents that have no ramifications on anyone else in the slightest. Outrage is pointless. It is hardly an emotion, it is a reaction, and an unproductive one at that.

Snap, snap, snap

Chronic pain seems to do that to me. The pessimist emerges. I concentrate on what I dislike, rather than what I like. I place fault at the feet of those around me. It is not the tourist who has caused my anger, I have caused it. I am on the verge of an eruption, the pain needs to be stopped. So another trip to Wellington, attempting to eradicate the pain, again, with radiotherapy. There are many types of pain, and most I can manage. Often, pain passes. That is how I tolerate  it. I know that it will pass, and I will feel good when it does. The pain I am experiencing now has been progressively worsening since December. It doesn’t go away. It is dulled by morphine, but always a small portion remains, chipping away at me. The radiation team suspect that the Hodgkin’s lymphoma cells are now inside my ribs, slowly expanding the bone, and that this expansion is causing the pain. Which is how it feels to me; like someone is trying to inflate each rib, coupled with a nerve pinch.

My appetite since the TimTam incident has not been great. I am not sure why this is. It could be disease, I certainly have some gnarly neck nodes at present. But, to be honest, I do not wish disease to be the reason. I am opting for denial. So, I shall look for other excuses. Mainly taste, I think. Since the November head radiotherapy, my taste has been lacking. I can recognise the six base ‘tastes’ and a few specific foods, but not much more than that. Fortunately, I can taste strong coffee as ‘coffee’, but I can’t taste any subtleties. I can barely taste beer as ‘beer’. It is not worth taking me to Garage Project at the moment. Occasionally, I find myself craving a dish that I know I shan’t be able to taste. This seems odd to me. It appears I can activate taste receptors within my mind but not in reality. Initially this lead to disappointments, further tantrums. But I no longer submit to these cravings. Still, the tantrums tend to remain. There are dishes and drinks that do taste exactly as expected, Coke, unfortunately, being one. Sometimes it is a relief to eat something and have it taste precisely as you remembered. Often, I am just left disappointed. I guess this is what global food corporations thrive on. A consistent bland taste.

Also, I have no sense of smell. Like I cannot smell anything. Again, this is side effect of the brain radiotherapy, so I’ve been unable to smell for about twelve weeks. You’re probably aware of the time frame. I do keep harping on about it. Anyway, it is unlikely my sense of smell will return. It is a peculiar feeling, having a core sense wiped out. Granted, smell would have been my choice, if I’d had a choice, I know I am fortunate. But I do feel a little dull, like I am missing more than just my sense of smell. Perhaps its absence will enhance my remaining base senses, and I will be a superhero again. Yes, again. Ok, I may have a Marvel complex. Actually a Whedon complex is probably more accurate. Like anything that vanishes, I did not realise how much I relied on scenting until I could do it no longer. I have had to adjust how I cook; watching the onions sauté rather than spinning around once they’re fragrant. This is on those rare days when I happen upon the energy to cook. And to be fair, I cannot tell you how palatable my creations are because I cannot taste them. It may be best for me to forgo cooking. My laundry abilities are also hampered. Either I must recall what I have worn and when, an unlikely prospect, or new systems are required for detecting dirty clothing. The old sniff technique is no longer valid. Dr Urbino’s affair remains secret. Florentino never gains his true love

Appetite, ah we’re back to appetite. Smell seems to contribute much to appetite. Perhaps I require bells to stimulate salivation as I no longer have my onions. Oh shit, my onions, I forgot my onions. Hmmm, well, I am sure there is a recipe out there that calls for blackened onions. No, no, don't worry, I'm not cooking. I know much better than to blog and fry. An inability to smell also impacts on food storage. I have never been one for expiry dates. But now I cannot smell if the hummus or milk, is foul. I just blissfully use it. Perhaps this is the cause of my nausea.

There are positives to an absence of smell. Public toilets, long drops, neither are a bother. Except I need to look a little closer before rushing on in and settling down. I guess pungent smells are meant to repel, to alert, to let one know that something is amiss. Smoke, gas, heat, petrol, biological fluids; all void in my nasal cavity. A little disconcerting, again when cooking. However, another positive, at least my nausea no longer feeds-back upon itself. Why the nausea? I do not know. All I know is that it isn’t smell related, but it is rather frustrating. I have become accustomed to vomiting in public, much like I was when I was eighteen. Except now it is daylight and I simply remove my hat, receiving compassionate glances rather than condescending snarls as I hurl into a garden.

So this turned out to be one giant moan. I do, once again, apologise for that. I guess I could claim this as an update of radiotherapy side effects, but really we all know I just felt like bitching. As usual. But writing this post has been helpful. I’ve realised that I probably ought not to cook dinner tonight.

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.               

GCSF – no longer on my ‘favourite drugs’ list

Well scientifically maybe, but not as a user. I am retrospectively writing this, at a time where I am not exactly feeling my usual chipper self, but I will try to resist the temptation to moan about my now sufferings, and purely focus on those in the past. 

We made a trip up to Edinburgh from Brighton the Friday before my last chemo. This, I will reiterate, was a trip sanctioned by my consultant; I was not breaking any rules. I was, however, very neutropenic and subsequently on GCSF injections. Again. I am starting to think this may become a regular occurrence. Anyway, I am sitting at Gatwick with Mike, when he receives a call from my Macmillan nurse giving him a few appointment updates; ‘Oh and I have noticed Olivia has quite a low neutrophil count so make sure to keep her away from crowded places….’ Time for a wry smile.

My first gut jab was Thursday, so by the time we were in Edinburgh, Friday afternoon, my sternum was already aching. Good news really; obviously my bone marrow was releasing all its goodness into my blood stream, so I may not have been dangerously neutropenic on the flight. Although this may be good news, the feeling is pretty uncomfortable. My spleen is working overtime despite suffering from lymphoma infiltration - a fact it likes to remind me of constantly, a gift of pain I then pass on to you. Sitting becomes an awkward pastime as I try to appease my sternum, spleen, gall bladder and arm all at once. I spent Friday evening in a quest to find the ultimate sitting position, a quest that proved fruitless.  

Saturday we had a lovely, and for me lively, walk up in the Pentlands (Munroing maybe?) where, aside from a decent and bloody blister, I had no adverse side effects. Yes ok, my sternum hurt, but that was to be expected. To be honest I was buzzing like a pre bedtime six year old; ‘Turn around now? But we are nowhere near the top!’ That night, post a third and final gut jab (admirably witnessed by my moderately needle phobic sister – ‘moderately’ being a euphemism) at a very nice dinner with a very nice French red wine, my pelvic bone starts to throb, and ache, and ache throb. Or throbache.  Self-medication with further red wine and a tawny makes sitting at least bearable, but come bedtime there is no chance for sleep as the pain is now relentless; radiating from my femur down my legs, from my pelvis into my spine, from my sternum into my ribcage, not to mention an ever present ache in my darcabazine damaged arm, a bizarre sore throat and an overwhelming nauseous feeling. Oh and my [insert expletive here] spleen.

The blur in the top left was initially a guy flipping the bird.....

Don’t throw up, don’t throw up, oh shit I am going to throw up. I attempt an explosive leap from the bed in an effort to reach the bathroom, but my legs give way under the vast bone pain and I slam into the wall, waking my husband in the process. He responds heroically at lightning speed, saving me from an imminent Hendrix style fate, rushing me down a foreign hallway, in the dark, avoiding shoes and bikes, in his boxers, without his glasses whilst pretty much still asleep. Telepathic high fives all round at a job well done, as I enjoy my dinner a second time, now with the beautiful ambiance of a toilet bowl and an overhead fan. I don’t think I need to tell you which I preferred.

My sister, who had magnanimously sacrificed her bed for the family cause, was pleasantly awoken from the couch to the sound of me hurling my guts up. She tottered out to have a look (who wouldn’t?) and sent a blarey eyed Mike back to bed. It turns out she has been suffering bouts of insomnia due to an exercise preventing injury, so we spent the night between the kitchen table and the toilet catching up. It was nice to have the company.

There is not really much more to this story. Sunday we went for a drive to Anstruther, had the best fish and chips in Scotland (pineapple rings for me). I had pretty bad bone and splenic pain most of the day, not to mention a demoralising feeling of fatigue. By St Andrews my body had decided to shiver uncontrollably. The rest of the weekend was a bit of a blur, somewhere between semi-consciousness and unconsciousness. Except I do remember the Bombay Bicycle Club curry. Man that is good curry.