pain and other stories: listen to your doctor

the last few weeks have been a challenging and hard, both mentally and physically – and on myself and other people.

there’s something… wrong… with my bowel.  what, we don’t know. we’ll know soon enough, but in the mean time, the pain is actually exceptionally hard to deal with.

one of the consistent features of advanced cancer is pain. i operated under some misguided illusion  that i’d escape that. i don’t know why i presumed that i wouldn’t end up layered and coated and shuddering under aching constant pain – or that i wouldn’t need help managing it. my high pain tolerance is something i have a weird sense of pride in. it is idiotic to take pride in a high level of pain tolerance.

so i had two ER trips – one in an ambulance – in a week.  i was being exceptionally foolish,  both times – because i didn’t take even endone, or even goddamn panadol for the first trip, and the second time, i’d gone 24 hours between targin (oxycontin) doses.  i realised the second time i was there that there was nothing the hospital could do for me, other than inject me with pain killers. the tests and the consultations and the investigation into the cause, and methods of managing my pain, are outside of the scope of a busy ER. we left, exhausted and frustrated, and i was angry at myself for failing to understand what i was supposed to do in these situations.

my nurse gave me a kind, but very firm reminder after the second ER visit where i called her that i actually need to include the targin in my daily medication routine.  as well as laxatives, two anti-psychotics (one for appetite stimulation), reflux medication, buscopan (it relaxes your bowel), and currently, my chemo drugs.  fortunately, i have no issues taking handfuls of pills. i can do it in my sleep.

the pain has shifted now, into a low level buzz below my ribcage. it is quiet and keeps flowing, but i’m not moved by it. i don’t fight with it now, because it is slow and gentle.  i don’t feel pain in the same sort of way. it still hurts, but i don’t wince.  the first two days were uncomfortable – several of the drugs are heavily sedating, and that’s deeply unpleasant and disarming. i’m shifting into a space where i’m able to stay awake all day, and focus enough to write again (see! blog post! proof of being able to string some words into a larger number of words next to each other in little blocks!). and even when it’s bad, it is still ok? i can live with it? my body feels it – the sweating and shakiness, the lightheaded feelings, but the pain is abstracted. it’s very, very odd.

i think it’s been one of the only communication slip ups i’ve had with my medical team – where i didn’t actually understand how i had to manage the pain.  that painkillers were not some optional thing i threw in when it got bad. they are something i take as standard, because my quality of life will rapidly diminish if i don’t act responsibly with frequent, stable use of opiates.  i won’t be able to finish meals, enjoy my life, or think clearly.  the opiate haze? it is infinitely better than the pain haze. there’s so much conversation about how addictive they are, and somehow that gets absorbed into how i feel about taking them.  a lot of those conversations strike me now as being both deeply offensive and ignorant to people with substance abuse disorders, and people in chronic pain.  i didn’t realise i needed pain killers, and i felt weak and pitiful when i realised i needed to ask for them in order to keep the pain at a managed level.

i’ve written elsewhere about my complicated relationship with pain – the higher tolerance, my interest in it. but this is another, new playing field i’m working with now, and i am curious to see where it goes in how i conceptualise my body and sensations.

the important lesson also is that when i don’t help myself, i don’t help the other people around me. it is my responsibility to do what my doctors tell me. if i am not sure, i need to ask for clarity. i need to know that we’re all on the same page and following the same course to make my body something i can comfortably inhabit.

 

i think i resisted the daily pain killers because severe pain requiring daily opiate means bad things. i have a bad feeling guys, a bad bad feeling about what’s happening in my body right now, and we’ll all only know after tomorrow. i’m getting ready for colonoscopy prep – a nasty 48 hours of drinking vile tasting liquids and living off white coloured food then liquid.  but i also know it’s only 48 hours before it’s over and by wednesday, this week, we’ll know. and you know, if it is bad, i deal with it.  there’s not much more i can do. i could spend this weekend crying, or terrified but right now, i just feel resigned and quiet. it’s probably the antipsychotics.

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About elizabeth

various things.
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4 Responses to pain and other stories: listen to your doctor

  1. Elissa says:

    The ‘like’ is for your gorgeous words, not for your shitty experience. Sorry you’ve had to deal/are dealing with this.

  2. Michael says:

    Dear Elizabeth.
    Thank for sharing such an insightful post. I feel that there is a lot to get used to with a new medications (particularly pain-killers), and feeling reliant on them often seems like a big step. Talking about this is difficult, and I think clinicians often aren’t aware how much these changes can mean to people. Your post really helps to highlight that and for all the clinician’s out there I thank you for it.

    In regards to the pain medications I think it is helpful to think about the long acting medications (e.g. targin) as pain preventers (rather than relievers) as they act through the day to try and stop the pain getting too bad and therefore extra medications being required. For some of my patients this helps it make sense why they are good to take even if they pain feels ok at the time that the tablet is due.

    It is great to see you blogging again Elizabeth. All the best for your test today. You will be in my thoughts.
    Michael

    • elizabeth says:

      thank you so much Michael – that actually is a really sensible way of approaching targin as a pain preventative medication – i’m already going ‘oh but it doesn’t hurt NOW! i can stop it right??’

      i think this is why i’m so keen to get onto the palliative team asap to work with them about how i can understand my own pain better. i lost something Badly in the wires – probably due to my pain levels. but my new palliative buds will help so much! i’m glad my post was helpful. xe

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