sore and crabby and without suitable pun

apologies – today will be less upbeat. 

i will however start with an amusing joke about how my tumours are hipsters:

Yeah, my tumours are so obscure, you probably haven’t heard of them.

(i blame Lachlan for that).

 

i’m feeling sore and sorry for myself today.  i was, as i often am about painkillers, pretty stupid, and didn’t take them pre-emptively. i waited until the pain got so bad i was actually yelping a bit.  pro-tip: that’s dumb. i knew it would hurt, i was repeatedly told it would hurt, and still, i thought i would be Perfectly Fine about it all. it is uncomfortable when i stand up, and when i sit down. fortunately, moving my arms doesn’t hurt, so i can knit easily.  and watch star trek. i can definitely watch star trek.

sometimes i realise that, for 10 minutes, or 20 minutes, i’ve forgotten about it.  a brief, lovely window of not running through all the risks and hopes and fears, over and over again in my head. and then, of course i remember.  i like the idea, in theory, of setting aside ‘worry time’ – 30 minutes a day where i am given permission to worry as much as possible, but for the rest of the day i focus on placing those fears into a little box, to take out during ‘worry time’.  this is a nice idea, and almost impossible in reality.  when every time i stand i get a stabbing pain in my ribs, i remember. when i feel slightly uncomfortable with any deep breath, i remember.  when it just randomly hurts, i remember. and all this makes me think of the fact that this has barely even started, and wherever i am going, there will be far more, far worse and painful things to come. abdominal surgery, recovery, limited diet while i wait for my liver to grow, having 2/3’s of a vital organ removed – and that’s the best case scenario.  i don’t even know what the malignant path looks like yet.  

i also stare at my phone in terror.  the first suggested date for knowing what the tumours are is wednesday/thursday. that’s when some part of the test comes back.  i guess the two week figure i was given is to work out in a bit more detail? but if it’s malignant, i will hear sooner. i am sure, in fact, that it will follow past procedure – the nurse will call me, and say gently that there’s something in the results that i need to discuss, and that my appointment has been moved forward to today/tomorrow, and bring your partner.  it is so easy to say ‘stop thinking about that possibility’.  it is a very, very easy thing to say. it is not an easy thing to do. what will it mean? what will it mean for work, for home, for my long term plans? how much of what i want to do is going to be shat on by this? i guess this is the angry bit of it all, or something. 

i can sit here and repeat the ‘unlikeliness’ of malignancy over and over in my head. i can type it out: confined to one organ. no evidence of lymph system problems, or cancer in lymph nodes. the size of them implies they have been there for some time and ergo are not aggressive. doctor emphasised it is the less likely option. etc.  this is a poor substitute for knowing, and i am bad at doing this.  and implying that i need to do this, and that it is something that is easy to do, makes me angry. it is not easy to do. using positive language, thinking positive thoughts, being able to remind myself that i will be most likely ok – it is hard, hard work, and i don’t feel like i am doing it well enough.

There’s also often implicit, and sometimes explicit blame: eat raw foods and you won’t have this happen to you, you should have more coconut oil! kale! live in nature! have a paleo diet, it’s more natural! don’t drink water with fluoride in it! it’s a horrible, unfair way of trying to explain and allocate blame for something both somewhat random, and very hard to understand. i don’t understand what has happened to my liver. i do not, for the life of me, comprehend how one of my vital organs is filled with lesions/tumours/whatever, and i never knew. i did not know.  i had no way, at all, of knowing this was inside of me – not only inside of me, but it is the reality of my body.  our bodies, their working, their mechanics are a physical mystery – in that these functions happen every day without even thinking about them, unless there’s something clearly wrong, or unless you are engaged in study about them. and even then, we can’t see it most of the time. the evidence is there, but it needs decoding in language that most of us are initially unfamiliar with, through tools other people administer like blood tests and scans and endoscopies and biopsies.  it is drawing dots between vague, possible links. there is no clear definition of what these things inside me are, let alone how they got there, or what is going to happen to the rest of my body in relation to these things. it is the doctors and scientists who have studied this who are equipped with the experience and knowledge to read this puzzle and sort out the pattern into something that i, and they, can work towards managing.  it would be nice to feel like i had control over this – that kale smoothies and a whole foods super foods raw organic clean eating whatever-the-hell diet would make these growths go away.  but until there’s evidence that one of these things will make a huge difference, i fail to see how these kind of narratives do anything other then shame people into thinking that their choice to not filter their water has given them a disease.

which is not to say that those diets, or foods, are not good for you, either. but cancer – malignant, benign, whatever – is more complicated than i can understand, and i’d argue, more complicated than people other than experts who are familiar with the language of disease, and the nature of cancer itself, can understand.  and that’s frightening for everyone. when you have to surrender in the end to an alienating system filled with experts using jargon, it would be nice to think that the kale smoothie is going to heal you, because … because whatever.  it gives a great sense of control, and maybe feeling at least a little bit in control does help manage anxiety. and managing anxiety does help with recovery (from my limited understanding). but i don’t believe in mantras, or actualising reality through positive thinking. all the goddamn positive thinking in the world isn’t going to make me wake up tomorrow without lesions in my liver, and it’s not going to stop the reality of the treatment process.  but staying positive does help – because it makes the process easier. and i try – i try as much as i goddamn can to keep my chin up.  i just have stabbing pains in my side and the reality of my situation in my head today, and i just don’t feel like being upbeat.   

 

*i actually love the living shit out of kale. i have a balcony at the moment that almost exclusively is growing kale, after a minor disaster involving an overheated hot house killing all my winter seedlings.  however, kale is not the god of all food. if you eat too much, it screws your thyroid.  i also love kale smoothies from my local vegan cafe, because i’m a hipster wanker.  kale won’t cure my tumours. i know, i’m disappointed too. 

 

 

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About elizabeth

various things.
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2 Responses to sore and crabby and without suitable pun

  1. greenspace01 says:

    I have heard that being angry and expressing it can increase your chances of a ‘positive outcome’ too (where positive outcome means you survive the lesions, their removal, regrowing your liver, and live to be an impressively-tattooed 80 y.o. who dies while knitting a Wesley Crusher amigurumi on a bullet train from Melbourne to Brisbane)

    • veritas says:

      your dream for my future is the greatest dream i have ever read in my life.

      i am definitely expressing it. i actually feel significantly better since i’ve started blogging.

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