Sam Alexandra Rose

Tag: lynch syndrome

  • For World Cancer Day

    For World Cancer Day today, I pitch to you that we need more knowledge, not more awareness. Sure, a picture of a candle shared on Facebook raises awareness, but I think by now we’re all aware that cancer exists, many of us painfully so. Awareness has been covered. We need knowledge – knowledge for a cure, knowledge for research, knowledge of how to support each other when it happens, knowledge of the symptoms to look out for, of how to help ourselves, of monitoring our own bodies, and looking after our mental health during and after the event.

    So instead of posting a picture of a candle on social media, how about we all post something that’s actually useful? Like a list of symptoms, or sources where people can get help and advice if they need it – or even donate to a charity. Awareness has been done already, and I feel like the whole thing is a bit like telling children there are cars in the road without telling them about the green cross code. Now is the time for knowledge, because knowledge can bring action. Post something helpful today.

  • If My Brain Were Hairy

    I tried waxing my legs today for the first time in years.
    Then I remembered why I haven’t used wax strips in years.
    It hurts. Sure, it doesn’t hurt for long, but it’s so very
    unnecessary to put myself through it. I’ve been through
    enough physical pain in the past and probably will in the
    future, all of it relatively unavoidable. So why would I
    cause myself more pain for no real reason? I threw the
    wax strips away, but not before realising that although
    I’m so good at avoiding causing myself physical harm,
    I do very little to avoid hurting myself emotionally and
    mentally. It’s like shaving my brain with wax strips
    instead of a razor. If my brain were hairy.

  • A Swedish Cancerversary

    Poor me.
    Pour me
    another.

    This summer will be five years since I had my sub total colectomy (bowel removal/intestine eviction). So, essentially that will be five years of being cancer-free. I’d quite like to do something to “celebrate” (as much as you can celebrate once having a life-threatening disease). I googled it to get some ideas and there are a lot of sites about it, apparently it’s called a cancerversary, but that sounds a bit weird. I looked up the exact date of my operation, and it was 27th July 2010. Funnily enough, two days ago me and my parents booked a trip to Gothenburg, Sweden (I’m learning Swedish and can’t wait to go). We’re going on our trip on the 27th. Weird, right?

    So that’s kind of a celebration. Though I might not want to mention that to my parents, because, awks. Awkward to talk about what happened full stop, but awkward celebrating me being okay when my brother died of cancer. Is that survivor’s guilt?

    I don’t know. Plus it’s occurred to me that any thoughts about celebrating six months in advance could be a bit previous. Like tempting fate. So. That makes me feel scared. So, mixed feelings. Happiness, relief, sorrow, guilt, fear, impatience.

  • Fog Lights

    This is the new normal.
    Take it and run with it because it’s all there is. 

    So what, we have to go to therapists now
    just to have someone who will listen?
    Just to have someone who understands
    or at least listens for long enough to realise
    there’s something there yearning
    to be understood? 

    Someone to shine a light in the fog:
    I’m starting to realise that’s all I’ve ever
    really wanted from anyone. 

    My door has always been wide open,
    now flung off the hinges as I sit
    muttering to myself: “This is the new normal.”

    I am still adamant that I’ve never cared
    what anyone else thinks about me. I just care about
    how I’m treated. That’s not the same thing.
    I’ll be myself even if it kills me.
    At the very least, I’ll try to understand me.

    I have never been more honest in my poetry than I am these days, and I have never loved writing more.

  • There’s nothing wrong

    There’s nothing wrong with the scars on our hands,
    we’re all just trying to understand.

  • English Clouds

    English Clouds

    Trying not to think about it
    is far too much like hard work.
    Believe me, I have been trying
    to kerb my thoughts, to retrain
    myself, but I don’t have the
    discipline, and it is exhausting.

    It is very much like trying
    to tell the English clouds
    not to cry about it.

  • midway

    as a human
    I think                 I’ve gotten both better and worse
    I have improved
                                      and fucked up
    my flaws have multiplied
                      and dissipated
    I don’t know anything anymore
    the size of my ego
    once huge
           is now   s k ew e d
    and I don’t know how to go
    one way or another.
    I don’t want to stay here
    midway between nothing
    and nothing else.

  • This is helping

    I didn’t die today.
    What, that’s my inspiration
    for writing poetry today?
    I’m starting to wonder if there’s
    something wrong with me,
    but there’s no gaping hole
    where my optimism should be.
    Everything is intact. 

    Sometimes the kindest thing I can do for myself
    is repeat over and over in my head
    “This is not helping this is not helping this is not helping this is not” 

    When does poetry turn into the demented ramblings of a mad person?

    But this is helping this is helping this is helping this is

    People say life’s too short
    to not have fun
    but it’s also too long
    to not have fun
    so maybe life is the perfect length. 

    When people say “are you okay?”
    what does okay mean anyway?
    Is there one definitive definition?
    Okay is defined as:
    “satisfactory but not especially good”.
    But what I would call satisfactory might
    not be satisfactory for someone else.
    Is my okay your okay?
    If you were me, would you be okay
    or would you be fading and waning
    under the bright light of day?
    Yes, I’m okay, but that doesn’t
    really mean anything, does it?
    Maybe instead we should ask
    “are you good?” because good is
    good, there is no doubt about it.
    And if you’re obviously lying,
    why does nobody ever say
    “I don’t believe you”?
    I might say I’m okay when I’m
    feeling barely satisfactory at all,
    but there is no confusion in good.
    Though I sometimes wonder
    If it sticks around like it used to.

    This is helping this is helping this is helping

  • I never collapsed on you.

    I never collapsed on you.
    I tried really hard not to, and
    I always found somewhere else
    to lean, or to just fall over sideways.
    I hate that I was the one to make
    you worry, and I never go on guilt trips
    so this is new to me, but I made sure
    to buy a return ticket. 

    I’ll still never collapse on you.
    I could lean on somebody new
    but I’d just feel bad for that too, 

    eventually. I feel better telling myself
    that I never collapsed on you
    but a suppressed memory is telling me
    that’s not really true.

    I rarely collapsed on you.

  • The self-care of not searching the internet

    One of these days I need to get better at realising when spending time browsing the internet for blogs about cancer and Lynch Syndrome goes from reading interesting stories and finding people who empathise, to just fucking torturing myself.

    Today is not that day.

    Tomorrow probably won’t be, either.

    (more…)