Out from Hospital, Into the World

On Saturday I was discharged from UCLH, after spending a total of nearly six weeks in hospital. This was, without a doubt, the most traumatic admission of them all, in many ways equalling my three week stay in Stanmore when I had my spinal surgery. Leaving UCLH after going through some of the worst and most scarring times of my life, there was a mixture of emotions, as there always is when you are discharged from hospital. I will admit that, for the few days prior to going home, I was dreading leaving, terrified that the pain would return when I was at home and there was not immediate access to strong pain medications. Still, I knew leaving was always going to be scary but that it was a step that I had to take. It was never going to get any easier, so I just needed to bite the bullet and take the plunge; I really needed to get home.

Two days before discharge I spent the evening in tears, scared of a few things. There was the fear of the pain returning, made worse by the fact that some of the weird symptoms that would often preempt one of the pain episodes were returning. My back was beginning to move, gargling and groaning like a normal person would feel in their stomach; following this I would experience an awful cramping pain down the back of my left thigh, caused by the movement of the bowel irritating my sciatic nerve; I started getting bad acid reflux; my stomach aches returned, nowhere near as severe as they were during the pain episodes, but it was still unnerving experiencing that same type of cramping, twisting pain and that winded feeling that had left me curled up on the sofa at home for the months leading up to this admission.

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The turning point, for me, was when I sunk my teeth into a good old Maccy D’s filet o fish and remembered all that the world outside had to offer. Unfortunately now my fricking student card has run out so I can’t get my free chips. Fortunately for me, I got cancer and had to defer my course a for a couple of years, so I get to live that student high life with my student card for two more years. THINK OF ALL THE CHIPS AAAAAH!

I was also scared of going home because being in hospital meant I had immediate access to medical help and pain relief. The idea of being far away from all this was petrifying and I really didn’t want to be anywhere but hospital, only changing my mind the day before discharge. Things were all happening too quickly: the pain pump came down; I began to eat once again. It felt like I was playing with fire. The doctors told me that finding out what I could eat and how slowly I should take things would be a case of trial and error. For them, an error meant a minor setback, just an indication that I needed to give my bowels a little more time to recover before eating so much. To me, that error symbolised a pain episode. And so I put things off. I put off eating by reasoning I would eat some soup tomorrow – it was always in a minute, later, tomorrow. All the pain episodes I had experienced followed eating, and so I had begun to associate food with pain.

My surgeon and the ward doctor did amazing jobs at calming my anxieties, but there was still that lingering doubt that all was not well. I had this deep seated feeling that something was wrong, probably, as my mum and multiple people have told me, because for the past eighteen months something has always been wrong. As much as I want everything to be right, it will take me a while to accept that things are right. I want to believe, but letting myself believe means tumbling head over heels into a world where, if the worse were to happen and I were to relapse, it would be crushing. It sounds pessimistic, but when you’re wholeheartedly hoping but not quite believing that all will be well and you will recover perfectly, your world doesn’t crumble quite so much when you receive that seemingly inevitable bad news.

Recently my medical team has reminded me frequently that, at every turn, things have gone wrong. Nothing has been simple, and each time I have neared the end in the past the goalposts have been moved a little, or a lot, further away. But now I have finally done it and my treatment is over! I cannot quite believe I am saying it, that I have got through it and reached this point, but treatment is completely and utterly over! It has been a long time coming, and it feels like I can breathe easier and more deeply, exhale fully, pause for longer than I have been able to since all this began.

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The day I was discharged I knew I needed to get out. I wanted to see EVERYTHING! So we went to the pub and I wore my new dress and I had fish and chips. And it was brilliant!

 

It is a surreal feeling leaving hospital after six weeks, stepping back out into a world that looks the same when you feel so changed. The trees, the people, the houses are no different; they are blissfully unaware of the torturous past six weeks. The world is simultaneously so peaceful and bursting with life, with more people, air and vibrancy than you have witnessed in what feels like forever. More than at any time during my treatment, I feel like I have opened my eyes and seen what the world has to offer. I want to do things, I want to see things, I want to feel things.

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Throwback to St Helier when Scout came in and suddenly I needed immediate medical attention from all the nurses, doctors, anaesthetists and ward staff, who coincidentally also happened to want a cuddle and a photo with Scout.

I am filled with a new sense of determination, and I am itching to get out. I do, however, have to take things slow, largely because of this bowel surgery which places limitations on what I should be doing. This does not lend itself well to having a new puppy, who is so full of energy it is ridiculous. The lovely breeder said she would be a great therapy dog, would need lots of quiet, nurturing cuddles, would be happy to just sit. Well to that I say, therapy dog my ass! She is an absolute delight but everything goes in her mouth. And when I say everything, I mean everything. When I was in St Helier they let us bring Scout in, partly because I had a single room and partly because the nurses and entire medical team could not get enough of her – they got us to take photos of them with her and everything! A far cry from being calm and docile, she ran straight up to me and immediately started trying to pull out my nasogastric tube!

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One of the thousands of shameless selfies I have taken with Scout. Note my strong eyebrow game – THEY ARE BACK AND THEY ARE FIERCE 🔥🔥🔥

It is lovely getting back to her though, and it is lovely getting back to life in general. I feel more free than I have done in months, and although of course the road ahead is hardly obstacle free, it is good to be able to just pause and enjoy life in a way that I can barely remember being able to.

In the future I will have three monthly chest and pelvic scans, because these sarcomas are nasty little shits that like to come back and spread to the lungs; I will need heart scans and kidney tests regularly because the chemo causes problems in itself, problems which can show themselves months, years after treatment concludes; I will still need to see a mental health professional for what I imagine will still be a good time to come; I will need Physiotherapy to strengthen what has been weakened by the surgery, chemotherapy, and past six weeks where I have done nothing but lay in bed.

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Top: a photo of Berghain taken as we emerged in the morning. It’s an old power plant. Bottom left: a very sneaky snap of the inside of Berghain. Cameras are actually banned inside but I’m a Grade A rebel and don’t give a shit (actually I did, I was scared of getting kicked out so took it sneakily from under my coat). Bottom right: me and my bff Kourosh channeling Berghain fashion and then realising we had accidentally dressed in identical outfits. Great minds eh?

This end of treatment does not symbolise the end of our worries, but what it does symbolise is no more surgery for now, no more radiotherapy for now, no more proton therapy for now, no more egg harvests for now, no more chemotherapy for now, no more partial bowel obstructions for now. It hits me a little more each day, and I begin to, I dare to, believe it a little more each day. It feels so good to be able to believe that, whilst things may never be the same again – which is crushing at times because I did not want a different life – I will still have a life. I can live and be happy like everyone else; it will just take time to adapt to my new normal… but who knows how far I can stretch my new normal.

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THE LIGHT IS BLINDING AFTER A NIGHT OF DANCING BUT I’M LOVING LIFE ALL THE SAME

Yesterday I started making a list of the things I wanted to do. I started because my best friend posted a memory on Facebook on what we had been doing three years to the day earlier. It was a photograph of us dressed (accidentally) identically going to a club in Berlin called Berghain, and it made me both sad and happy to see. I was sad because there was no way nowadays I could go to a club that was open non stop for thirty six hours and manage to dance for ten hours straight, go for lunch, sleep for a couple hours, do all the sights like the Berlin Wall, Brandenburg Gate and the Reichstag, eat about twenty Mars Bars and drink about twenty cups of tea, then go back and dance for another ten. Remembering the past can be gutting, but going through something like this makes you so, so grateful for that past. It is upsetting to feel so far away from the person you used to be, someone that you were perfectly content being. But for the first time in a while it made me almost angry and it made me motivated; it made me determined. So I wrote a list, and hitting Berghain was on the top of that list.

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My dance partner, Shankho, and I dancing Latin and Ballroom in our first year of university at a competition.

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A few pictures of us on that night out in Paris. The top right is a tad blurry but all the best nights are. And the bottom left is us thinking we are hilarious trying to get a photo where we look like our straws are up our noses. Obviously we are very mature and were not drunk at all.

These aren’t going to be things I can do in the next year, two years, maybe not even in the next five years, but I will do them again. I will dance in that salsa bar in Camden I went to with my friend Ellie, the one we went to after going to that temporary beach on the top of the Camden Roundhouse where I wore my jelly shoes and took half the sand away with me inside them; I will run, I will run a marathon at some point in my life and I don’t care whether it hurts because it is the one thing that I always knew would be on my bucket list, even though I had never even written a bucket list; I will go back to Brighton and walk along the shore, because that was something I did days before my spinal surgery and I need to prove to myself that I can, that I will, once again do and see the things I did before; I will return to Paris, hit up that cocktail bar we went to which led to one of the longest, funniest and best nights of my life; I will wade through the muddy – or hopefully not so muddy, actually – fields at Glastonbury music festival and dance all night with more than enough beer in my hands; I will swim, which to you may seem like a small thing, but to me will take a great deal of guts because of my incontinence; I will dance once again, not club dancing (which I am incidentally always down for too) but dance as I used to – perhaps Latin, contemporary, salsa, ballet or ballroom.

These are simple things, but things that mean a great deal to me. Right now they may seem impossible but people surprise, and people have come up against a hell of a lot worse than I have. Our struggles are all personal, and whether it’s physical or mental life can be a glorious asswipe. Things will not be simple, they never are, but it is life – and I am beyond ecstatic that I have mine back to live again.

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This was on the Berlin Wall and it is a message that resonated with me then, and resonates with me now. It makes me feel empowered and I want to keep this outlook throughout my life. 

About the Author

tumourhasit@gmail.com

18 Comments

corinna

Made up for you. My partner and father to our little girl of 7 has sarcoma too. He’s also just had a tumour removed from his small intestine, 3Rd operation and 4th time it’s dared to check in again. Your strength at fighting it, your smiles, your attitude are phenomenal
I’ve read all your posts but never commented as I’ve never know what to say really, I’m not one for all that guff about stay strong etc as it’s something that makes world’s and lives fall apart. I want to see you dancing and doing that bucket list, much love and give that gorgeous woof a stroke from me. Corinna xx

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Deb Rogalski

Oh Beth,
Absolutely loved the blog. Wishing you the best of everything life has to offer. Much love from the other Beth’s Mum…

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Anne Jepson

welcome back, Beth, so good to see you, you make me feel good to be alive, bless you you beautiful star xxx

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Slavi

So happy for you Beth! Imperial, and the Dance Club in particular can’t wait to have you back! We’re always here for you and immensely pround of the strength and resilience you have shown!

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Bernadette Redmond

So happy you’re home Beth with your lovely Scout. I saw a fabulous photo of our young friend who had sarcoma and went back to do his final year in secondary school this year. How exciting for him to attend his debs looking so healthy and feeling wonderful. We hope you will soon be back to full strength and will keep lighting a candle and pray for you at Mass every week. Love Terry Bernie and Lucy XXX 🐶

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Louise Dobell

Hi Beth and family,

I am so pleased that you are finally home after a marathon stay at UCLH. So many ups and downs during your stay, although I know there’ll be more, your spirit as usual is uplifting and gives so much hope to others. Beth you have a very special gift in your attitude and how you shine. May the future be filled with happiness and energy when you’re achieving your dreams.

I look forward to your next update as I’m sure it will be full of fun and excitement whilst there will also be the down to earth, nitty gritty, of any further medical treatments. Continuing your mental health support will be vital as it will give you the one to one time to talk about fears and anxieties etc. that you may not feel able to share with others. The trauma of what you go through daily may never be fully understood by others that haven’t experienced it but strength has been exceptional.

Lots of love and hugs to you and have fun,

Lou. Xx

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Ellie

Wow. So pleased for you. Was a pleasure to meet you in uclh. Best of luck and enjoy!! Ellie xx

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Alison

So pleased to hear from you Beth, I’ve been looking out for your posts. Welcome back! Alison x

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Allison Semikin

So proud of you my beautiful baby Beth. Your dignity and respect for others have shone through at every step of your journey where most mere mortals would’ve crumbled.
What you have been through over the last 18 months and especially over here last 6 weeks have been truly harrowing and here you are ready to step back in to the world all guns ablazing.
This blog post has deeply moved me and I am so glad to read that your feeling more positive and raring to go.
Love you to the moo. And back and all the way round and back again.
You are and always will be my Stargirl xxxx

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Jan troup

Beth you are a true inspiration to everyone, yiu have been through more in you short life than most people 5 times your age and you write about it so well, and I know you will do everything and more than what you write about as your determination to overcome is huge.
so I wish you the very best for the future Beth to you and your mum and dad you are an inspirational family
Jan xx

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Miguel Ángel

God bless you and your familiy and your friends. I will pray to the Virgin Maria and his Son for your healh.

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Anita

Yeah Beth, it is so good to see an update and such a positive message among the fears… You are an amazing young lady.
My thoughts and many hugs are with you.
Let me know how you plan to prepare for that marathon.
I am not a runner, but I might be able to cheer you on😉

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Annon

Your blog is so inspiring, made me laugh out loud and almost cry. I am also visiting UCLH soon for something, but I feel a whole lot better about it now. Thank you. Wishing you well and hope you can get back to doing the things you love.

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Elaine Bovill

Probably the most amazing and uplifting thing I’ve ever read! Ray and I wish you so much happiness in everything you want to do. Love Elaine B

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Stefani

Whatever you have said above they all remind me of my past.When I was a cancer patient and when I was undergoing treatments..The pressure I had and every little minute I spent with pain inside.I am very proud of the strength you have.Maybe I didn’t have that courage you have now but I continuously went through Cancer treatments because of my parents. After all I could come to new normal because of them.

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