On the First Day of Christmas my Tumour Gave to Me

There have been three times in my life when I thought I was going to die.


 

I was lucky enough to have the opportunity to have my writing featured in The Mirror. To see the shortened version of this article please visit their website. I want to say a massive, massive, thank you to The Mirror. Please feel free to read the full version after checking out the shortened version.


 

There have been three times in my life when I thought I was going to die.

The first was the snow day of 2010 when I had to walk through the graveyard at the top of my road in the dark, shortly after watching Paranormal Activity; the second was when I found out I had cancer and the third was when I was faced with a potential 25% survival rate.

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Very exclusive photo of my glamorous self

My name is Beth Semikin and I am 22. I am also the incredibly elusive author of the world renowned blog, Tumour Has It (not endorsed by Adele) and I have cancer. More specifically I have the extremely rare, and equally elusive, Epithelioid Sarcoma.

My situation has significantly improved since that day when, thousands of miles away from home, I was faced with that potential 25% survival rate. Because thanks to three operations (one massively botched), two attempts at proton and radiotherapy (one massively blighted), and six incoming rounds of chemo (me massively bald), I am now expected to live a healthy, happy life.

So where am I now? Well, I am currently in Jacksonville, Florida undergoing radiotherapy and proton therapy. Ten weeks ago I went through an eleven hour beast of an operation, where my tumour was removed along with the right side of my sacrum, a spinal disc and nerves. A massive spinal fluid leakage was also repaired and my spine was reconnected to my pelvis with a hefty amount of metalwork, transforming me into the bionic woman. This operation was without a doubt the most difficult thing I have ever gone through, but I managed, kicking and screaming, to emerge the other side looking (only slightly) dishevelled with two fantastic scars, one of which gives me the illusion of having the world’s longest buttcrack. Hoorah!

And now alongside radiotherapy comes the run-up to Christmas! A time for festivities, family and frivolities, in every sense of the word! But for me, this time of the year has come with a slight twinge of sadness, the problem being that Christmas is my favourite time of the year…

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Photo for the Christmas production at Infant School. I was a rag doll and I am on the bottom right.

I would say that I spend about 50% of my time thinking about Christmas… replaying some of my best childhood memories: feeling that uncontainable anticipation as the day approached; waking up at three on Christmas morning, so excited that I felt fit to burst and physically sick, to watch Chitty Chitty Bang Bang on repeat with my little brother in bed until it was an acceptable hour to wake our parents and unwrap our stockings; recalling the sound of crackling tissue paper and the delight as I unwrapped my first ever ballet tickets.

But now rather than spending the run-up to Christmas how I should be, prancing merrily with a Snowball in one hand (the alcoholic one, not the cold one) and a glass of mulled wine in the other, between shops laughing with exaltation and spreading joy to everyone I meet (maybe I’m romanticising it just a bit), I find myself attending daily hospital visits across the other side of the world. The radiotherapy itself is not too taxing, in fact thanks to the high quantity of sleep inducing painkillers I’m on it’s more like a scheduled daily naptime. The tough bit is dealing with the other things that this cancer diagnosis has brought on. There’s the fear, the worsening isolation and worst of all this year, rather than the Christmas spirit finding me, I find myself trying to find the Christmas spirit.

This is a completely alien concept to me and I am keeping hope that one morning soon I will awaken, Christmas princess in all her glory, but in the meantime: where do you look for it? Yes, this may sound like the type of ridiculous question that Carrie Bradshaw might pose, but it’s food for thought and something that I am genuinely struggling with.

My Grampy amongst gifts on Christmas Day. This sums up a lot of what Christmas is about for me: warmth, family and large bottles of gin.

Because it’s not just about the presents; Christmas day is, for me, the one day a year where we all pause and make time in our busy schedules to just be together. I love my family and I know that each Christmas we will all sit together at our table, my Granddad and dad at the heads with a turkey leg on their plates. I know I will look around from underneath my always-too-big-for-me cracker hat, and feel like the luckiest girl alive. And every year I eagerly count down the days until Christmas, feeling like a little kid again, not only because it means I get to eat chocolate in the name of Advent but because I know that we will have the exact same Christmas as we have done every year. And it will be fabulous. So as silly as this question sounds, our traditions and my memories have meant that Christmas has become not just a day, but a strong part of my identity.

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Me opening presents On Christmas Day

A part of my identity which has taken a severe battering since this Christmas we will be a mere ten hour flight from home. It wouldn’t be so bad if this was the only thing that had changed, but cancer seems to be stripping me away bit by bit; my identity and independence feel unnervingly delicate, taking hit after hit. First it was the self-catheterisation, the incontinence, the crutches.. then it dragged me across the world away from my friends and my life, put me in such pain that I am confined to a wheelchair at times, and now Christmas – the one day that is supposed to be unchanging in time, untouchable. A day of innocence and sweetness that every year, upon the stroke of midnight, should magically turn me back into a little kid again. But now I am not a little kid – I am a cancer patient. Cancer has changed me, and this month the gap between my life now and in previous years has widened dramatically.

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me and a Floridian snowman on Atlantic Beach, Jacksonville, Florida

It is easy to focus at times like these, full of sickness and pain, on what I’ve lost rather than what I still have. I see photos of my friends going out and I reminisce about this time last year… the nights out I went on and the Christmas dinner we hosted at our university house for ten of our closest friends that I should be celebrating with once again, doing all the things that a twenty two year old should be doing at this time of year. Granted I do not reminisce about the carnage of dishes, the burnt cranberry sauce in the saucepans, the spilt-red-wine-on-cream-carpets saga that took three days for the house to recover from and more for our heads, but I would wash plates for three months to be able to do it all again. I yearn for the reminder of my crippling student debt and lack of funds that Christmas shopping brings, the endless ambling up and down of fancy department stores that begs the question: where is the under five pound section? I lust for the smell of pigs in blankets that I, as a vegetarian, should not condone but love to hate.

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my family and I at Atlantic beach at the Deck the Chairs Christmas display

But in the midst of losing these things, regardless of whether it seems like it, I still have a hell of a lot. Yes, it’s not right that at twenty two I am not living the life I want or should be, but tough luck; it may not feel fair but life isn’t fair. I am still so lucky for so many things and although I may feel like everything is going wrong, more has gone right; I am still here after all. My family may be spread across the globe but their support and love can still be felt, and thanks to the wonders of modern technology there is nothing stopping us from seeing each other on Christmas day. I am unbelievably lucky to have a national health service that has paid for me and my mum to travel to Jacksonville for state of the art treatment, all expenses paid. I am lucky that our country cares enough about me and my future such that they are willing to pay for treatment that will protect my fertility and allow me to have a family should I want one. I am lucky that my parents have been able to secure jobs that have given me my fantastic life, where I have wanted for nothing, and that have paid for my dad and brother to travel to Jacksonville to spend the holidays with us. I am lucky to have amazing friends and family who have been so supportive throughout my struggle, who have travelled to numerous hospitals to see me and haven’t been grossed out by frequent recounts of my post operative constipation.

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Santa, an elf and myself (rocking my homemade Christmas hat) at the Proton centre Christmas party

And in the things I am thankful for I am determined to find the Christmas spirit. I encounter the love and kindness of others on a daily basis, whether it’s my friends back home organising a fundraiser whilst I am here for a cause so close to my heart, or an invitation to Thanksgiving we received from a family we met briefly for a day here in Jacksonville. My family and friends have got me through this entire horrendous ordeal and without them I may have managed physically, but mentally I dread to think where I would be. All in all, cancer may have left me pooping myself in public, but it has also left me appreciative for what I do have. I am lucky that my brother just turned on the soothing tones of Michael Buble’s Christmas album which has, along with the fairy lights we bought yesterday, helped spread a little cheer. I am lucky that I am having proton therapy in a centre filled with dedicated staff, which held a Christmas party where Santa took time out of his busy schedule to make an appearance. All these things together remind me of what Christmas is about. It was to be found on the faces of all the young cancer patients, in the look of wonder and abandonment, in the sparkle in their eyes as they looked at the real Santa and truly believed they were the luckiest children alive. It was heart warming to see, and for one morning all the crap in the world that goes along with or is totally unrelated to this cancer diagnosis disappeared. And each of these things lit up a fairy light on the Christmas tree that is me until I was feeling fully-fledged drummers-drumming pipers-piping lords-a-leaping ladies-dancing one hundred percent Christmas-tastic. Or maybe ninety nine percent, but the other one is definitely to come!


Some photos from Christmas past!


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Me with either Chip or Dale at Disneyland at Christmas, aged three

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Me with Mickey at Disneyland at Christmas, aged three

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my cousins and I on New Year’s Day at my Nanny Maureen’s. I am on the furthest right, thinking I am a right crazy rock chick because I’m wearing a knitted hat (which was actually bought at a craft sale – how grunge) and some green converses.

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me and my mum on another New Year’s Day at my Nanny Maureen’s. I have by this point traded in rock chick for femme chic, thanks to some beautiful brown diamond tights.

About the Author

tumourhasit@gmail.com

8 Comments

allison semikin

Beth, a beautifully crafted piece of writing that I know is very heartfelt. I think you have so much Christmas spirit and you show it each time you sit and share at the proton centre making christmassy things with the younger children. You may not feel like you do but believe me it is there. We are going to have a fab Christmas but I can’t promise I won’t burn the dinner! Love you heaps xxx

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Sue Cunningham

Happy Christmas Beth! Hope you have a truly special Christmas Day with your family. My Christmas wish for you is that all your future Christmases are as magical as they used to be! 😊 hope the treatment is going well. The blog as ever is great and the photo of you all as rag dolls brought back lots of happy memories. Take care sweetie. Much love from us all. Sue xxx

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Sian

Loving the florida sandman!!! Have a great Christmas and a very happy new year. You write with such natural talent – I am in awe. Xxxx

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Tracey McKinnon

An excellent article Beth – you are so talented! Well done for sharing your Christmas thoughts. Wishing you all a great time and lots of fun!
And Happy New Year!
Tracey, Jian, Josh & Jade xx

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Jayne

A magnificent blog reading while I am sitting in a restaurant in Oxford and me and Jon are toasting you your mum and dad and Luke and remembering our times skiing xxxa massive hope for 2016 and love to you all xxxxxx

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Linda gregory

Beautifully written, perhaps you always new you could write well? Or is a wonderfull find amongst all the terrible journey.
Hope your recovery continues.

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Rhyetta

LOL funny! I understand how Christmas is different when you’re going through cancer treatment. My husband and I experienced the same thing. He finished his radiation on Dec 23rd. It was a different Christmas spirit to be sure but actually, I think it was more amazing than other years. He has epithelioid sarcoma as well. Your mom shared your blog with me on FB. I’m glad to have found it.

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tumourhasit@gmail.com

Hi Rhyetta, thank you so much for you message. I am so pleased your husband has finished the radiation stage of his treatment. Congratulations and good luck with everything in the future. I know what you mean about Christmas; there was something special about ours for sure. I think there is always so much pressure on and build up to the actual day of Christmas that this year, in the absence of such high expectations, there was something relaxed and special about it. Although saying that, I think I will still be looking forward to our normal Christmas next year. Thank you for reading my blog, if you ever want to chat about our shared love (?) of epithelioid sarcoma please feel free to drop me a message/email 🙂

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