Sam Alexandra Rose

Writer, researcher, music lover, cancer survivor with CMMRD ("double" Lynch syndrome)

Tag: lynch syndrome (Page 4 of 6)

For World Cancer Day

February 4, 2015 / / 0 Comments

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

January 28, 2015 / / 0 Comments

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

January 27, 2015 / / 0 Comments

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

January 18, 2015 / / 0 Comments

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.

English Clouds

January 15, 2015 / / 0 Comments

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

January 11, 2015 / / 0 Comments

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

January 9, 2015 / / 0 Comments

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.

January 7, 2015 / / 0 Comments

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.

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