Variation is the reality: and i’m really scared of blood clots

firstly: those of you who follow along at home (ie, FB and Twitter) will know of my overarching terror of blood clots that i have been expressing in a public forum for the last few days.  imagine those times where people didn’t express overarching terrors in a public forum. oh, i guess a lot of people still don’t. anyhow.  it’s actually not a new fear, just one that is my current focus. in fact, at one point last year i went off the pill due to my fear of blood clots.  i took the pill mostly to control extremely severe PMS, and as a preventative measure for endometriosis, which my mother had very severely, and for my acne.  i went to my doctor, and she explained gently that pregnancy was far more likely to give you blood clots, and no one tells people not to get pregnant due to that risk.  her point: it was good. my GP has years of putting up with various disease stages from me.  i even started taking aspirin at one point to protect against blood clots.  (nb. i was in therapy for this fear that everything was trying to kill me.  no need for therapy now! everything IS trying to kill me).

so, i have actually set up an action plan. i have a little timer on my computer that reminds me to stand up and move about for ten minutes each hour. for that ten minutes, i can clean up a bit, walk up and down stairs, go onto the balcony and stand there for a bit, do squats or a ten second plank, check the mail, do a few dishes.  but i stand up for that ten minutes and move around, and each hour, i drink a cup of water.  rather than just freak out about BLOT CLOTS i can actually do something that will help, rather than just thinking every twinge is a sign of my impending death.  it’s similar to why i decided to go sober, for good.  i sip nice smelling drinks, but at this point, i don’t intend to drink for the rest of my life. not because it’s bad, or because i have an addictive disorder, but because i want to help my liver as much as i can, and not drinking helps. also helps with  blood clots.  and i know the signs of a clot.

i also have worked to give myself Activities this week.  something, each day, that i need to do, and aim to get done.  mostly it’s meeting with people, but tomorrow, it’s a trip to the post office, and maybe a walk to the Spinners and Weavers guild. they haven’t emailed me back RE my membership request, and i’m a bit nervous of groups of new people.  but it might be great? i  might get better at spinning!

today though, i’m also going to talk at least a bit about statistics in more depth than i have before.  i’ve mentioned that i’m actively not seeking out the five year rate for stage IV colorectal cancer.  this is for a lot of reasons, some of which are just emotional – i am scared – and more of which are because i don’t see how it will help me.

the title comes from a Stephen J Gould quote that a fantastic co-worker who i had lunch with today sent me.  and it’s the truth of it. i could look up how long the ‘average’ person with stage IV colorectal cancer would be expected to live.  but that fails to take into account so many things that the number gets blurrier and blurrier.  what about stage IV in  my age group? my gender? my BMI? my smoking/drinking status? my health at point of diagnosis? the size of my primary cancer? the lack of localised cancer as well as spread cancer?  if i was to be bothered trying to find all of those statistics, would it even  make any sense at all?  the doctors are confused by quite a few aspects of my cancer, and the tumours resulting from it – i have no pain, and no effects from them – the limited impact on my liver – the rectal cancer is extremely small given the size of the secondaries – the mets are contained to the right lobe of my liver –  the secondaries do not physically, on a scan, look anything like mets, or as my GI doctor said, like anything she’d ever seen in 40 years. how does that fit into the statistics?  what throws me out as more likely to die (the size of the secondaries) verses less (the size of the primary, lack of localised spreading, lack of symptoms)?  that number will mean nothing to me but fear at the lack of variation. it is all variation.  i am in a liminal space of variation, moving from unknown bit of treatment to the next. and EVERY cancer patient faces this. we all are variations on a general thing called ‘cancer’.

i have no doubt that ‘attitude’ doesn’t cure cancer.  i could be as glum as i wanted, or as cheery and convinced that running on the beach with a rainbow in my heart and some random natural cure in my guts will make me better. it doesn’t change it. there is no evidence that being positive cures cancer, or helps in any way.  what helps is science, and the position your body is in.  i am unfit. i don’t drink enough water. i am lazy. these are things that i’m not bashing myself up over, but simply observing. these are also things i can help. i don’t have a lot to do right now. i can work on those things, and work on maximising the chances of the medicine working.  and it still might not help, you know? and that’s just the way it is. i do what i can, in a pretty powerless situation.  and, in the process, might actually get the dishes done more often.

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About elizabeth

various things.
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2 Responses to Variation is the reality: and i’m really scared of blood clots

  1. Cordelia says:

    Good advice given to me. It doesn’t matter how good or bad the stats are, if you are the one (falling on the bad side). Then it still sucks.

  2. Nine says:

    I like your action plan and your Activities. Good luck with the guild!

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