why i am weird about facebook at the moment. answer! i don’t know.

i’m taking a facebook break at the moment. by which i mean, i have a handy-dandy thing on my computer which blocks me out of it after spending ten minutes. ten minutes is enough to make sure nothing vital has happened which i’ve missed/not heard about somewhere else, and enough to faff for a tiny bit.  it’s enough, anyhow.

for some odd reason, i’m find it draining and uncomfortable at the moment. spending time on it makes me feel tired, and sore in some way that i can’t explain, and have no reason for.  social media has been a vital, comforting thing for me during all of this – a place where i’ve felt connected to the outside world, connected to normal life, and normal things, and normal feelings. but at the moment, i need a break from it. from facebook anyhow. i find twitter doesn’t effect me in the same way, and instagram is just a joyous, happy celebration of images that always makes me feel that little bit better about humanity. but having my access to it restricted feels really, really good – not being able to just compulsively click refresh, that constant feeling that each update might contain something which will greatly enrich my life – is good. i feel like i’ve made the right choice, even if it means i do feel sad that i will be spending time apart from some of the people who i only see on FB.

one thing i am finding very odd at the moment is time. time moves extraordinarily fast for me – there is no sense of impatience, or that slow sluggish feeling where time crawls by. everything races past me, and before i know it, it is the afternoon, the evening, the next day, the next meal.  it’s strange – i am wondering if it comes from a greater awareness of how precious time is, and how fleeting our time alive is, or just from wanting to hold on to being alive pretty intensely.  it’s something i wonder about in terms of mindfulness practice – the idea of holding on, or letting go.  i am personally pretty keen on not dying just yet.  i feel like i am gripped onto life, pretty hard, and not wanting to let go.  but at the same time, i have an understanding that, at some point or another, i will need to, just like everyone else.  and that when the time comes, i want to not hold on anymore.  is it bad to be attached to the idea of living?  non-attachment, letting go of the desire, that passion to experience things, and to be here, aware, moving, inside the moment? i don’t know how i feel about that.

in a lot of ways, cancer has forced mindfulness onto me. i am not sure how anyone would stay in any way sane without at least a partly mindful approach – that capacity to take one day at a time, one moment at a time. it is such a trite thing to day, and something i was repeatedly told prior to starting treatment, or in the early stages – to just take each day as it comes – but it has become pretty much how i approach things, and how i live. it has become a profound aspect of how i approach what my life currently is, and what my life is likely to continue to be.  each day, each breath, each single sacred moment that i am aware of just being alive.  it is a pretty remarkable thing, just to live.  the past, or idea of understanding our own past narrative, is pretty much something concocted in our heads for the sense of continuity.  we alter and shift memories, and they are unreliable and muddled.  i think fondly of past chunks of life, and less fondly of others. but i don’t live there.  and the future?  nothing has taught me about the unreliability of our own internal narrative about our future quite like this diagnosis. it is nothing. it does not exist.  the future is a thing we project, imagine, consider, dream of, worry about, mentally exist in. but there is no fixed future in any meaningful sense – any sense that it is worth inhabiting. planning is fine, but planning is also done in the present.

your future, your thoughts about it, are a carefully constructed and supported lie.  realising that, on a profound level, and coming to terms with it, is one of the most deeply liberating things i have experienced.  my misery at my lost future that was stolen from me was a meaningless fabrication. it wasn’t real. it wasn’t assured. it wasn’t owed to me.  i can let that go entirely, and accept whatever it is that i get from here on in.

in other exciting news i have considered my tally of good cancer patient things i have done, and bad ones.

GOOD CANCER THINGS!

1. drinking more water. way, way, way more water.  i’ve slowly been forcing myself to drink it down, every day, and it’s far less difficult now.

2. exercise.  it’s light, walking mostly, as well as small, regular things like walking up stairs, sets of ten-fifteen squats, arm stretches with bands, weights etc, and planks.  i feel far better about life, myself, and my body when i exercise.

3. putting on weight. GO ME. i am a cancer hero.  the steroids don’t seem to be doing it – i don’t actually have much of an appetite for the three days i am on treatment.  it’s the week after – it’s a normal, healthy, sensible appetite, and i eat whatever the hell i want.

4. continuing to avoid Dr Google, but learning more about my illness in a way that i find safe.  this mostly consists of looking at how my anti-cancer drugs work, and reading about research and clinical trials. decent, legit information sources are very careful about prognosis information from what i’ve noticed – it’s the poorly written garbage that tends to be more fraught. years of information management have taught me pretty well how to assess a source in terms of reliability, which is helpful (though mostly common sense).  i am going down something of a rabbit hole of Helpful Other Stuff, which is all pretty harmless even if it is ineffective. this includes: large amounts of Vitamin D supplements, turmeric, chilli, milk thistle, and now, coffee. today, i read that in a few really big, really reliable studies, coffee seems to help liver function in a clinically significant way.  i am really into giving my little guy the best possible chance at regeneration.

5. cutting out red meat, trying to eat more vegetables.  red meat is one of the definite, known risk factors for colorectal cancer. at first, i was all ‘WHO CARES! it’s too late now!’ about the risk factors, and things that help prevent it, but now i’m a bit more inclined to follow a diet that is low in those risk factors, and higher in dietary fibre.  this is very hard for me because i like red meat a lot, despite only eating it occasionally. cutting it out altogether will be a gradual thing for me, and is more a mindset than an action, if that makes sense?

6. not drinking alcohol. this has been far, far easier than i expected – it’s an example of a mindset change rather than a behaviour change – why i was doing it was more important than just the simple act of not having a drink.  i never managed it to help my bipolar, but the simple fact of having a compromised liver meant that it was a pretty strong motivator to cut it out.  now, it smells and tastes way too strong for me to enjoy it, though i do sniff people’s scotch. so much of the joy in scotch is the smell.

BAD CANCER THINGS!

1. i go into crowded places when i am at highest risk of neutropenia, and i don’t bother with hand sanitiser.  yup. i do that.  i find malls one of the easiest places to get exercise – they are shaded, temperature controlled, flat, and easily accessible with visual distractions. i have come to the realisation i am not the Outdoors Type. i like inside.  that’s ok! and i am getting exercise in a way that i find good. i just break that rule.

2. face touching.  my acne is bad. really painful, really swollen, and exceptionally slow to heal due to the chemo.  i prod my face a heap. that is a BAD idea on treatment because it can encourage bacterial infections. and, acne is a bacterial infection, which is probably why it’s so rotten and sore.

3. bicarb mouth washing.  i manage to do it once a day, every day – which is something.  but i don’t do it 4 times a day as i was originally instructed. this is probably because i’ve not had any issues with mouth ulcers, or any mouth soreness at all.  another example of a limited number of side effects!

4. Staying Positive! sorry, but STUFF that.  staying realistic, yes. staying focussed and committed to treatment, to making tough decisions, to evaluating what i want to do in regards to surgery and risks, yes. but positive is something i find a dumb idea, compared with realism. the cult of Staying Positive is actually really harmful – when you have times you just can’t bring yourself to hope that this will all go away, and you’ll get a No Evidence of Disease stamp, having the idea that you are failing at being a good cancer patient because you are not POSITIVE is really cruel.  it’s the same with anger.  the idea that you shouldn’t get angry? sometimes i am very angry.  the problem for me is holding onto the anger, or holding onto the happiness, or holding onto any emotion.  feel it, experience it, and don’t try and grasp it.  treat it with gentleness. even the negativity, the anger, the fear.  they are ok. they are just feelings.

amusingly, cancer has probably made me follow a healthier, more active lifestyle than i ever have before.  this is going to sound really, really weird – and i’m sure i’ll have times where i don’t feel this at all – but if i live through it, if i get to the other side and have a big fat NED stamp, cancer is going to have been an exceptionally valuable experience for me. hell, even if not.  i have learned how important it is to tell the people who matter to you that they matter. to check in on people, because being checked in on is so so good for me. that you will be surprised by who really cares about you, and who doesn’t – and how different people have a range of ways of showing their love, and all of them are valuable.  that nurses are a gift, that pets are a deep and abiding comfort, that having someone by your side to take this on with is a life saving force.  that you can do things you never thought you would. that in my case – my deepest darkest terror – cancer – was something i could face, could live with, and could learn to understand and accept, warts and high mortality aside.  that i could do it without crumbling into constant terror.  that dying is just something we need to accept will, without any doubt, happen to everyone, including yourself and everyone you love.  and that’s just a thing, a part of being alive, and viewing death as the enemy to fight isn’t necessarily the healthiest way to approach the reaper hanging over your shoulder.

AND:

IMG_0570

lemon tree flower.

two other things: i can drink coffee again, and my balcony is doing excellently.  best way to witness the greatness of my balcony is via instagram, which is at @hraesvelgveritas – but here’s one shot for you non-instagram-people

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About elizabeth

various things.
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5 Responses to why i am weird about facebook at the moment. answer! i don’t know.

  1. Lisa says:

    beautifully written and as always thank you for sharing.xxx

  2. Lisa says:

    i’ve been thinking that too.im thinking a nice brekkie somewhere (my shout).i can do weekends or evenings.let me know what suits.xx

  3. Kerry boswell says:

    True about false positism. This is what I read in Barbara Erlbachs(sp?) book, about her cancer exp( although breast cancer and that has a whole cult thing built on it in usa.)
    Its actually harmful to lie to yourself.Better to do a ritualistic exp which deals with the anger- so your subconscious accepts it as real and doesnt shove it way down deep to fester or wait until quota to big to handle and zang! Jacknifed up into consciousnous with all other bits unable to ignore or sometimes handle.
    ( eg- ritual ex would be naming a towel after someone and wailing it on floor for five minutes while telling towel by name exactly why it pisses you off to no end.
    Eitual behavior accepted by subcon same as real, and outlets it out.

    • veritas says:

      i keep meaning to read that book! seeing the breast cancer cult in action upsets me – both for those women going through the experience, and for the terrible situation with pink ribbon stuff funnelling so little money into research – into things like ‘save the boobies’, and for the fact that bowel cancer is far more common, has a (slightly) higher mortality rate, and has far less ‘awareness’ and research campaigns, despite the fact that it’s actually preventable in a lot of cases if people cut down/out red meat, cut down/out booze, don’t smoke, have enough dietary fibre and vitamin d and exercise. and that’s not theory – it’s scientific, verifiable fact (though rectal cancer actually doesn’t appear to have anything to do with exercise. that made me feel slightly less guilty!). get that out there, and have people as alert to what to look for in poo as they are in their breast checks, and a real, important difference can be made. anyhow. rant.

      i do a LOT of guided meditations – far more when i was starting treatment and feeling really ill, and really needing to work on imagining the tumours shrinking, because i could feel them in my abdomen and it terrified me. but i also work very hard at feeling, being aware of, and letting go of the strong emotions that i inevitably feel – and you know, that includes the good emotions, because holding onto them will only make the fact that i will at some point be scared, or upset, or angry again harder when i do feel it, as though i SHOULD be positive, and i SHOULD be happy. being realistic about my cancer, the prognosis, and the difficulty of managing it has made me far more at peace, and neutral towards it than any positive thinking did. and accepting death as a reality has been a complete relief. i am still sad, angry and frightened, but i accept it.

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