6 month scan [mCRC]

Wednesday 4th September 2013

so: about a week since last update.......which included details of the planned push on steroids.  Although the upshot is what was feared, the waters have become very muddied as to exactly what chemical does what to george, and we are now looking at changes to other meds he is taking. Anyways, the steroid rollercoaster in more detail:

Not to complicate things, but covering the week before, george had shown mood changes from high to quite low in the same day, there were times he had been confused, compulsive, agitated, restless, tearful, dis-engaged, miserable, insecure, clingy, times he had hallucinated and times he had experienced myoclonus [twitching in his muscles].  Perhaps more attention should have been paid to these and any underlying, or associated, emotional turmoils, but the focus at the time was on trying to prevent a steroid reaction, so while they were noted, they weren't treated as 'significant,' - or maybe they weren't 'prioritised.'

So he wasn't in the best shape heading into the rollercoaster, let alone once he was strapped in.

Wednesday, being the steroid start-day, got off to a fair start - earlier hours of that morning he had woken from a dream shouting and wailing - understanding that someone had been trying to get into the bedroom, i presume with murderous intent, based on george's disturbed state when he woke, but our routine was to be 3 tabs a day, taken with food - more dreaming on the afternoon, but nuthin major - overall a good day and we did comment towards the evening that george's pain had seemed to be less.  George a little bit emotional, but as was said before, par for the course recently.
First sign of anything amiss was late night wednesday when george started doing a strange laugh - almost sarcastic, but with overtones of hysteria - quite a strong word to use, and he wasn't highly 'energised' [is the best word i can find] - but this was definitely a change to his usual mannerisms - kind of a cross between a sob and a laugh, followed closely by confusion.

So anyways he settles, and has a really good night - sleeping through until 9 a.m. which was when the thing started going pear-shaped properly.......

george woke up absolutely convinced I had my hands round his throat trying to throttle him.  The extremely awkward thing about this is i just cant remember the exact chain of events.....[who remembers the very first seconds of consciousness when the alarm goes off?] I do remember worrying that i had poked him in the eye or something....[dont laugh] but im not sure if this was after his panic, or before....We had been lying face to face, or at least we fell asleep that way, after he needed comforting from a bad dream, and i generally sleep with my hands and arms quite high anyway - sometimes with my hands under my head or under my pillow or whatever - so for sure i can see how we may have become tangled, but categorically i cant say i didnt have my hands somewhere near his chest, or his throat - - -  I *do* remember waking from a vivid dream, but nothing further, so the jury's out and my take on it being george experiencing paranoia cant be 'proved' so to speak. 

So thursday rolls on and george finds he does have increased energy and enthusiasm, only accompanied by a new tremor in his arms. By 3pm when the District Nurses had come round to see to his hickman line, george seemed to have forgotten all about his trauma this morning and was buoyed up [by the attention I presume] - CMN phones to check how he is and according to him, everything is hunky-dory  Wicked-witch-of-the-west here though has a word with her afterwards, to raise a few concerns, but the schedule continues: 3 tabs a day, taken with food.
By 1800 george [to me] seems to be having trouble co-ordinating his hand movements - snatching medicines out of my hand for eg, but apart from this, no major tragedies and he settles down to sleep by 2350

Friday morning began the 'loop-the-loop' section of our joyride - anyone following my personal FB statuses might remember something along the lines of "Your snoring's making me feel sick" - well i wish it had been just my snoring, but unfortunately no - george hiccupped,belched and wretched his way through the next three days [showing altered mannerisms - ie the half-hysterical laughing/sobbing and becoming weaker, more dissociated and withdrawn].
By Saturday morning I was noticing that his belly above his navel seemed to be distended - this despite him having a really good bowel output for several days and his waist at his navel actually decreasing in size [measurably]. Figure in as well what could be described as a mood-swing, also frequent stupor, or difficulty in thinking and expressing what he wanted to say, poor memory, jumbling of words, basically zero to eat from Friday until Monday inclusive, and then only small bites with difficulty until today... and in my eyes, and georgey's...

the steroid's just plain bad news.  

It took a GP call-out two days in a row to confirm george wasnt obstructed again [the swollen belly attributed to a combination of accumulated gas and potentially also fluid retention] and at one point there was a distinct possibility of another hospital admission.

So - been feeling a little dissociated myself to be honest.  I had a brief flurry of imagined vitriol, when i was trying to organise my notes, to put the case medically against the steroid, but this came to nothing, particularly after spending an hour or so on the MacMillan community-forum website and responding to a relative of a newly diagnosed patient, with stark encouragement to grasp the nettle and fight the fight [of self control].  It all just becomes more and more surreal - curiouser and curiouser - trying to learn how to respond and plan in a calm, yet persuasive and calculating way - i mean - that's just not me: slamming doors and stomping off in a huff i can do - but this? - like i say: surreal.

On a brighter note - today was a damned good success: george's divided family came together at ours - everyone together in one room [bar a few nephews and nieces of course], on what turned out to be a gorgeous sunny day.  We treated ourselves to a few fatteners from a local bakery and a patisserie and there was an enjoyable hub-bub - maybe a teensy bit much for george at one point afterwards, when he became a tad emotional [and there I go again, wondering if this was a chemical side effect] - but on the whole: productive.

Monday 
30th September 
2013

Where to begin..... 
fairly eventful day for george today: i was up fairly early to make a call to his mac nurse [JM] and i understood she was going to phone back to arrange a home visit. Perhaps i misunderstood something, because an hour later she was at the front door [while i was in the shower]. George shouted something garbled to me and by the time i made sense of it he was downstairs letting her in.. .. .. cue comedy quick-change for the pair of us and a bathroom left looking like a bombsite.. .. .. however:

The reason we had asked for the visit was that george has been showing much increased myoclonus [muscle-twitches in pretty much most parts of his body]. To some degree these are a nuisance rather than a major issue, but we monitor them as they are a sign of opiate toxicity. Considering he has had worse pain after his recent surgery and has been using slightly higher doses of his opiates, the amount of twitching he was doing didnt seem to match his opiate consumption, so we needed some advice.

JM, as always, was very thorough and came up with some recommendations. George having been disturbed from his sleep was drowsy, so not sure how much of the discussions he took in. I understand the way it works is that we need to assess how well his liver and kidneys are functioning, as these are the organs that process the opiates out of his body - if they arent working as well as they used to then he will be retaining chemicals which can become toxic [hence producing the muscle twitches] - other stuff to consider as well, like how much calcium and potassium [and magnesium?] is floating around inside, so she spoke to his GP on the phone to arrange a nurse to come and take blood.

Toxic is perhaps a strong word to use, and it's a bit 'medical' - when he is awake, george is perfectly lucid and 'himself' - so it's not a case of anything 'urgent' as such - just the amount of twitching he does is becoming an issue - couple of times he has spilled drinks and i am sure that the more powerful twitches must be a strain on his muscles - particularly muscles recovering from surgery - also there is the issue of resting: far from ideal when you're constantly moving [at times threshing around] am sure.

Long-term, JM doesnt feel there are any alternative opiates to substitute [rotating medicines can help, when one starts to make someone toxic] so again she has put the idea to us of using Ketamine, or perhaps Diamorphine [in other words Heroin]. As i am finding out - Ketamine is similar to a recreational drug, commonly known as angel-dust, similar to PCP, and reputed to cause hallucinations and out-of-body experiences at recreational doses [ie high doses]. Not sure how much info to give george and wouldnt want to prejudice him, so for the time being am holding back. Like i say, this is a longer term option.

Short term, JM advises to add in a muscle relaxant: Lorazepam [like Diazepam] and tonight george has been sleeping a *little* better i think - technically he is still moving around a lot, but the movements have been slower and gentler, some of the time [at other times he is basically jumping, or flinging his arms out]. Presume the Lorazepam is a benefit to him, but will have to see what kind of hangover he has in the morning - maybe we need a higher dose of it. End of the day, he doesnt appear emotionally distressed As to whether he is actually 'resting' is another thing.

One thing I didnt mention to JM was the fact george has lost weight [now just over 8 stone, but rising slowly] - presume opiates work kind of like alcohol does: more on skinny people compared to weighty people. Checking him just now though, I feel there must be some metabolism issue. There was no way he was having this kind of reaction to his opiate prior to being obstructed, and the surgeon commented that he had seen a problem with george's left kidney and ureter, during his op. In a way I hope this resolves with time [2 weeks now since surgery and people are suggesting we allow this long again, before we see signs of proper recovery].

... ... ... .

So after JM's visit george had breakfast then went back up to bed - time came to call him to get ready for his oncologist appointment and all was fairly well - only the doorbell goes again and its our district nurses, baying for blood. To be fair to them, they were very quick and efficient, but it did set us back a bit time-wise. Parking at the hospital was a medium size nightmare and we did encounter a teeny-weeny bit of parking rage [secretly i think i enjoy driving aggressively when people cut me up] however we got a space and george felt up for walking to the outpatient dept. Little bit shakey at first, but he did really well. Commented to me that he was dreading seeing the onco.

Onco. was his usual self and george very hesitant to come out and say to his face he didnt want more chemo, agreed with onco. though, that it would be ok for me to make an appointment myself to see him without george [to ask some nitty-gritty questions]. i think george just wanted to be out as quick as he could. Sometimes george can see the funny side of the situation and has been known to take the mick out of the guy and his mannerisms, but today he didnt have the energy.

He *did* have the energy to stop off at the corner-shop with me afterwards and when we got home i think he enjoyed his shop-bought sandwich, then it was back up to bed: dozing and watching TV.

As george was twitching quite badly, we decided to start the Lorazepam about 5pm. When we woke up about 7, george was showing signs of sedation, but said he was hungry. Personally I would have been quite happy to eat the battered fish I served, but george described it as burnt [god save me from fussy eaters]. i still find humour in this, but i will also try harder next time. Thinking back to the thousands [or was it millions] of meals my mother served up to us as children and the issue gets a bit blurry - end of the day, it was food on a plate then.... and it was food on a plate tonight, but then i guess as children we didnt have terminal illnesses to deal with. Generally george is eating 'well' [just not five star] and including fortified high-calorie drinks from the pharmacist. Take-out pizza is definitely on the cards though.

Worst point today i reckon was when George's sister [JS] rang - maybe a bit naughty, but sometimes [and sometimes often] we just dont answer, as it can be hard-going. George bit the bullet tonight and returned her second call. Bless him he was really tired and not at all in the mood for her style, but he kept mis-hearing what she said, or misunderstanding her intention. I didnt have anything up my sleeve either [after the 'burnt' fish stand-off - and it *wasnt* burnt - just crispy] but it was sad to hear her grasping at a conversation that just wasnt meant to happen and wasnt going to. 

Anyways.....

I think george is genuinely pulled in two directions about having to make "a decision" about further chemo - when he understood he had already decided not to pursue it. Difference now, being he has to say what he feels in front of a health-professional [and quite an enthusiastic and confident [almost zionistic] health professional at that]. The onco. was suggesting a slightly different regime this time [FOLFIRI if youre interested] and I have had a quick look at some of the information available online. Throughout our experience of cancer I have tried to stay impartial and to provide just the information i think is relevant and that might help george make his decisions, but this time i definitely have an opinion.

So that's where we are - one year on and considering things like "quality-of-life" and [no disrespect to individuals in the profession] standards of hospital care, also maybe family responsibilities.

Death is still a dirty word in our house, but our pillow-cases are crisp when they go on and there is fresh fruit and milk in the fridge.
Will keep you posted xxxxx