A Day (or Two) in the Life Of…

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Front view of my metalwork

Four days ago I had yet another operation, but this time it was for something a little different. In my previous operation, the right side of my sacrum and a disc were removed and replaced by a titanium disc and screws that were used to reattach my spine to my pelvis. Because of this metalwork it is not possible for me to have just proton therapy as planned, but a combination of conventional radiotherapy and proton therapy. This is just as effective at killing any potential remaining cancer cells but it also has a few unwanted side effects, namely damage to my fertility.

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Side view of my metalwork, including one of the surgeon’s Nokia 3310.

So to prevent my ovaries from being completely irradiated and obliterated (which alongside ruining my fertility would also cause me to enter early menopause) they moved them way up high out of the way of the radiation.

I was not a happy bunny the day before this op, in fact I would describe myself as having been thoroughly pissed off. At the time I would have blamed this on every single person or inanimate object that I came across and/or looked at me funny, especially my crutches which I told to fuck off at least once. However looking back I was scared. I was scared of the anaesthetic and going blind, and weirdly I was terrified of the cannulas because things that never used to bother me have started to unnerve me. I can only compare this to much how in A Bugs Life the bad grasshoppers learn that an ant on its own is harmless but an army of ants are badass, one cannula on its own isn’t a big deal but after you’ve had what seems like thousands, you really begin to dread them (or I do anyway).

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What the baby I have potentially saved by having this op will look like according to a free app I downloaded

But anyway in the end all of this was okay because I was a total wimp and asked for some numbing cream from paediatrics and so didn’t feel a thing when they put them in. I think I will be asking for that cream whenever I set foot in a hospital in the future, even if it is just because I have a light cold. So then they put me to sleep and next thing I knew I woke up with my ovaries moved to safety, hooray!

Things all seemed to be going pretty swimmingly until the day after the operation, which was a little bitch of a day. My blood pressure dropped a lot in the night so they monitored me closely, taking my blood pressure hourly throughout the night. So I was sleep deprived and in pain (since some idiot decided to put me on less pain meds the night after the op than I had been the night before the op) and then to top it off the doctors payed me a visit.

To be fair to them, my chemo and radiotherapy doctors are really lovely and brilliant but unfortunately for them they were bringing me pretty mediocre news, which I had kind of guessed after seeing they had made appointments to see me but despite this I really wasn’t in the mood to hear. It turns out that when the biopsies came back in full they showed that I had a different cancer type than they originally thought, called an Epitheloid Sarcoma. This type of sarcoma is even rarer than the MPNST they thought I had and, because of its rarity, there are no statistics on the effectiveness of chemotherapy in killing it. Additionally, they told me that my tumour is a high Grade 3 i.e. It falls in the most aggressive category there is. Because of the above two points, I decided that I will now be having chemo because I figure lets just throw everything we’ve got at this motherfucker.

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One of the many beautiful Hermes scarves my overdraft is made for.

So yes, I will be having chemo, starting next year February-ish. This is a concern to me because I have been assured I will become bald and I have got a really weird shaped head which has a dent in it similar in size to the bomb crater in Carshalton park, for anyone who has been there. For anyone who has not it is massive, so big in fact that each Guy Fawkes night there is a massive bonfire in it and they set fireworks off from inside it. Luckily for me I’ve got some really lovely parents who I figure if I drop enough hints will buy me a Hermes headscarf. And in response to you mum, arguing that I can’t wear a silk headscarf because it will slip off, I maintain that double sided sellotape will do the trick.

Weirdly I don’t feel too worried about having chemo; In fact, I feel brighter today. Maybe it hasn’t landed yet because it all feels so far away and I’ve got to do all the proton therapy first which involves getting to Florida and actually staying there more than a week, or maybe it’s just the product of getting a good nights sleep. But whatever it is I’ll take it because I feel stronger. Im ready to keep fighting and do whatever I need to to get through this because although it’s frustrating now, this is just for now. In the scheme of life, it’s just a bump in the road and although it’s shit right now, it will get better. I will get better.

About the Author

tumourhasit@gmail.com

11 Comments

allison semikin

Beth, you are a trooper. Throw anything at you and you take it, deal with it and come back even stronger. We will be Stateside very soon and I can hear Mickey a’callin. Not sure how you do it but each day you make me feel even prouder of you. Love you heaps xxxx

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Anne Jeps

Oh my God, Beth, you’re even more amazing today than you were yesterday! Upping the love and support beams and love your predicted baby, these apps are uncannily accurate, who designs them? Picasso’s offspring me thinks xxx

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Shellie Dormand-Bean

I was invited to like your page by a friend and it was only after reading a few of your blogs that I realised I know who you are! My oldest daughter was in Luke’s class at Banstead infants! Both my girls went to Wallys, and I once had the pleasure of seeing you dance during a Gym and Dance display in the hall there.
I just wanted to say how eloquently you write and how powerful your blogs are – you said that you wanted them to be for people with cancer and their families, I think they are also a masterclass for the caring professions – it really hit me when you said a nurse took your BP but didn’t even speak except to answer questions and I thought ‘No excuse, they should treat everyone as they’d like to be treated themselves’!
All the best for your treatment, I hope the cannula fear subsides! Keep writing, you are very very good at it!
Love to you and your family, from Shellie xxx

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Lesley Gagg

We are so proud of you, every time we read your new blog we know how much we love you.
You are facing everything with such strength and determination We know everything will be ok but it all takes time which must be so frustrating for you.
All our love
Nanny Rabbits and Grampy

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Nicola Hart

Beth, I cannot believe how hard you are on yourself. You have had the most incredibly rough time (that’s putting it mildly obviously) and yet it seems you still feel you have to apologise for when you admit you are feeling pissed off with it all. You have every right to feel that way and infact other people going through the same thing will feel relief that you are putting these feelings in your blog – it wouldn’t be normal otherwise ! So carry on with your amazingly truthful and inspirational blogs – you are doing brilliantly. I didn’t realise how local you live to me. If you would like me to make you up a remedy using the Bach Flower Remedies to help with your feelings re your surgery then please let me know – I would be more than happy to make you one up (I am fully qualified and not some nut case !). I wrote to you when you started your blog, and understand the feelings that radical surgery leaves you with. Take Care and hang on in there – you are fab x

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Donna Dawson

Beth yet again you leave me speechless! All I can say is how unbelievably amazing you are. Keep fighting hon and look forward to all the things you plan on doing when you get better. In the meantime I look forward to seeing your Hermes scarf darling !!! Loads of love Donna and family xxxxx

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Raphael Dapaah

This was such an enjoyable and humouring read. Your comparison of the apparent dent in your head to the Carshalton park crater had me in stitches. (I live in Carshalton!)

Can i just say you are an inspiration to us all. I love your fighting spirit and determination!

Wishing you all the best!

Raphael

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Jayne

Dear Beth this sounds just another blip that has booted you right in the **** but reading all your blogs you will pull through as you’re a very courageous fighter and you will find the strength to pull through it all. You are a massive inspiration to everyone and I’m very proud of you xxxx lots of love and hugs xxxxx

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Judith

Omg Beth. This is just not fair! If I could take your cancer and transfer it to some evil bastard I would gladly walk over broken glass to collect and delivery it. Sincerely Wishing you strength and success of your fight. Hugs x

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Janine troup

Hi Beth, you may or may not remember me but you went to school with my daughter Sophie and unused to spend a lot of nights. Out with your mum and dad. I am so sorry for what your going through but I wanted to tell you what a very special girl you are. I’ve been reading your blog and think your amazing a very brave young lady indeed. I wish you the very best of luck with all your treatments Beth and please give my best to your mum and dad and if there is anything I can do please just let me know x

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Michele semikin

Beth you are amazing! I’m so proud to be in your life. Every time they throw something at you, you bounce back with determination and strength. Love you lots Michele xxx

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