Poems for Childhood Cancer Awareness Month: 1) Me

As my lovely mummy said in her post a few days ago, September is Childhood Cancer Awareness Month. I have been woefully silent for a few months, but it is extra woeful (no idea if that makes sense?  Right now it is too late for words and meds are taking effect!!)  to be silent now we are in September, when we should be trying raise awareness of childhood cancer. I have been thinking about what I could do and was coming up pretty empty handed. I have been struggling with my writing a lot recently and I have about a million posts half written out, but not finished.

Today CCAM and what it means to me, and others, hit me extra hard for various reasons, some of which I will go into over the next few days if I am well enough – if not, it may be over the next couple of weeks. So I was sitting in bed/lying in bed like a beached whale, with a mountain of paper tissues growing beside me, ugly crying, and I felt as though I needed to do something to let out my feelings.

What has happened to someone I felt close to in the last month or so has hit me, well, like a wrecking ball, and for certain reasons, of which I will not go into now, explaining to others how I feel has become particularly difficult. I will go into those reasons in another post because I think they are really important, but that is for another day.

On an average day when I feel I need to let my feelings out, I would normally write a normal blog post, but like I said, I’m struggling at the moment with that. So I decided to do what I haven’t done in god knows how many years: I wrote a poem. Actually, I wrote several poems, and as usual with me it turned into an epic (in length, not content) monstrosity, set to rival Ulysses (again, in length not content!). At this moment I am thinking of releasing them one at a time, but if I wake up tomorrow when I’m not quite so manically tired and think Jesus Christ I released a terrible poem, how embarrassing, what have I done?… then this one may remain a stand alone poem.

And I might accidentally end up slipping and hitting the delete button…

Now, I have not written a poem since I was in Year Two when I was trying to appeal, as a cute kiddie wink, to the mean people who love deforestation in order to save our rainforests. (Spoiler alert: It didn’t work.) However, whilst I might not have saved our rainforests, I did win a poetry book and that was, and is, obviously the most important thing. The point of me telling you this is not to brag about my mad six year old poetry writing skills, but because this may not be an amazing poem and I want to warn any potential haters to back off, like this kid with forks over his eyes. (Seriously watch the video. Bold statement here, but easily one of the top five videos on the internet – and I actually think by saying that I’m not even giving it enough credit.)

At this stage I don’t even feel like I really know how to write a poem, because generally when reading one, if it doesn’t rhyme then I’m sorry, but I’m out. This one only has a few rhymes, so sorry about that, but I’m trying desperately to remember everything my lovely English teacher, Mrs Stocker, taught me about poetry at English GCSE, and I’m really hoping reading this doesn’t make her die inside. Mrs Stocker: if you do read this and it is massively disappointing, I just want to let you know that I actually used the word stanza today multiple times…. so that’s something at least, I guess? And, Mrs Stocker, if you are even two percent dead inside after reading it, please contact me immediately and tell me to remove the damned thing. Your honesty will be rewarded with gin.

Anyway. I’ll stop rambling on now like I do when I’m nervous… Here you all go….

A Collection of Poems for Childhood Cancer Awareness Month.

1) Me

Childhood cancer is being told you are fit and well

When you can see,

When you can feel,

Your body fading a w a y.

As you unwillingly trade

Your vitality, your strength, your young, healthy body that is free to

Run,

Laugh,

And dance as it pleased,

For a thin, frailer frame that struggles to carry supermarket shopping;

Then even reach the supermarket without the arm of a friend.

That struggles to keep breath in the aisles amongst the

In

Throws of an

Out

Panic attack. That struggles to

In

Function and get

Out

Of bed in the morning.

 

Childhood cancer is the lack of awareness amongst doctors,

Who prescribe Paracetamol and Ibuprofen, as though it cures cancer.

Well, in the dreams of childhood cancer and their parents it does,

But in the real world I, and the rest of childhood cancer, walk,

It does not.

 

Childhood cancer is the ignorance of specialist consultants

Who assure you there is nothing to worry about,

Who you are only too happy to believe

Until you reach breaking point and your body

Breaks.

 

Childhood cancer is the ego of a surgeon operating incorrectly,

Happy to reach his knife outside his area of expertise

And ever so careful stab and slice it into my back.

Inside my spine,

Sucking my nerves, tumour and whatever else happens to be around

Up,

Up,

Up, and away.

Well most of it anyway.

The rest he spread up my spinal cord.

 

Childhood cancer is being told you’re all clear,

Until suddenly the monsters your mummy and daddy warned you about when you were young;

They’re back and double the size.

 

Childhood cancer is the breath you never think you’ll take

After hearing you have a potential twenty five percent chance of survival.

It is waiting the weekend and discovering you can somehow,

After all you’ve been through,

Live, laugh and love for those two whole days,

Not knowing whether you will be alive for them next year.

 

Childhood cancer is being lucky enough to undergo life saving surgery

But unlucky enough to write these words.

 

Childhood cancer is

Incontinence; self-catheterisation; dysfunction in more ways than one.

It is post traumatic stress disorder; overwhelming anxiety; paranoia.

It is depression and repression of memories of those hours,

Blue with pain and begging to die.

It is the shame of screaming those words

As your friends die around you.

 

Childhood cancer is registered disabilities.

It is cowering in your wheelchair,

Eyes down and blurred with tears,

Putting clothes back on the rails to avoid asking the shop assistant

To clear

The damn

Disabled changing room.

It is hating the fact you now need to ask,

As your old self breezes past with her beautiful friends

And her beautiful, working legs;

And her beautiful flushed cheeks;

And her beautiful hair that she was never nearly grateful enough for;

And her beautiful life she didn’t take nearly enough time to appreciate;

And her beautiful ease, bounce and laughter as she turns, without a second thought,

Around the corner.

 

It is finally making it to the disabled changing room,

And your mum pulling your trousers

Off one leg,

Then the other.

It is her sliding clothes over your ankles,

Over your shoulders,

As she helps you stand quickly to check

That your incontinence pants

And your bloated stomach,

Swollen like a baby in a diaper –

  • The shape of the woman you are –

Are reasonably well hidden under this new look,

So that you can sink back into your wheelchair

Like you’ve just run that cross country where you qualified for Surrey,

Like you’ve just floated off stage after that ballet recital you danced in,

Or like you just stood up to look in the mirror.

 

Childhood cancer is feeling hideous in that shitty skirt,

Proportions all wrong,

But buying it all the same.

Because you know that no outfit is going to turn you,

Turn your body,

Into the girl who took your breath away moments ago.

 

Childhood cancer is sending your mum to the checkout with your purse

At twenty three,

As you hang back near the exit,

Because you are too anxious yourself to pay.

After all, when it was your turn, what would you say?

How could you ever follow that girl you saw today?

 

Childhood cancer is hating yourself for no longer being that girl.

It is you filled to the brim, overflowing with self loathing

Because after all the self love and acceptance you preach,

There is no self love, you are left battered and beaten.

You are hating yourself for that reason.

 

And what brought it on was as simple as clothing.

 


 

I just want to say that not all parts of this post reflect how I still feel, but I can wholeheartedly say that at times in the past it is exactly how I have felt. I would also also be lying by saying I never feel like this any more. I am just lucky enough to be able to say that I feel these things left often than I used to.

About the Author

tumourhasit@gmail.com

11 Comments

Allison Semikin

Beth this is so beautifully written and is from the heart.
I wish I could carry your burden for you as I know how heavy it can be for you. It’s not easy baring your soul the way you do but how else can we raise awareness of the reality of cancer in children, teens and young adults.
I am so very proud of you my darling.
To the moon and back and all the way around and back again ❤️?

Reply
Heather Dowdeswell

Oh my! I’m glad these feelings are less often for you and I hope they get less and less. I’m also grateful you were able to share this honest and beautifully written (and I’m not just saying that) account. My son was only five when diagnosed so he was never able to verbalise his feelings. I believe I can relate to some of them as his mum. Well done. Much love. X

Reply
Becki

Beth having both surgery on spine and having benign tumour first in sacrum then turning into osteosarcoma that they also spread up spine etc! Like you I know the nerve pain, incontinence and especially bloated stomach due to bowel problems radiotherapy caused. I too suffer from depression and anxiety, ptsd from time to time especially relating to not given the choice to preserve my fertility then now infertile which broke my heart and forever changed me.

But regardless all the problems, extreme pain etc and how sometimes depression etc comes & goes. You like me are just as passionate, focused, aiming high to improve yourself and help others like those without childhood cancer because all you can do is take each day and taking time out and rest when depression or pain gets too much. Enjoying the good days with our special mums!

I complied these poems in the past:
https://issuu.com/fixersdesign/docs/the_big_c_book_final_issue_singles

Love Becki x

http://www.copingwiththebigc.co.uk

Reply
Anne Jepson

Dear Beth your writing touches my soul, hope you will publish one day. Sending you and your family so much love and hoping today is a better day xxx

Reply
Justine golder evans

Beautifully written Beth……raw and truthful and the realities of cancer x you have my utmost respect.
Love
Justine
X

Reply
Sonja Staelgraeve

Oh Beth, once again your writing moves me to tears. Both because I can relate on some levels, and because a beautiful young girl like you shouldn’t ever have to endure what you have. The dark days are certainly dark, aren’t they? Yet here you are, experiencing the light at the end of that horrid journey, scars and all, smiling and living. Of course our journeys continue on, this disease peeking through here and there, it’s scars we bear, but we’re among the fortunate ones to have time on our side. You inspire me Beth, with your voice, spirit, and grace. ?

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Jayne Plackett

Inspirational Beth. I love reading your blogs, your poems, your heart rendering feelings. Your words pull strings in everyone’s hearts and love pours out for you from every pore. You are strong. You are beautiful. xxxxxx Keep writing because it really is your vocation. Sending love and hugs xxxxxx

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Tracey Mckinnon

Makes me so sad to read this BUT I’m so glad you don’t feel like this every day. You are a beautiful woman, please don’t forget that ever ? xx

Reply
Miriam

I empathise with the section about “hating that you now have to ask”. The Docs suspect I have Reactive Arthritis, which has caused significant impairment on a day to day basis. There are days that my legs don’t work, so I know how frustrating and emotionally painful it is to have to ask for help where you never would have needed to do so before. Every time you have to ask being just one more reminder of the pain you are going through. Thanks for sharing, I really appreciate reading heartfelt, well written pieces that talk about difficult topics like these. I think reading pieces like this reminds me that I’m not alone in dealing with some challenging aspects of having an ongoing, incapacitating medical condition and that’s immensely valuable. Thanks!

Reply

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