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.
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.
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.
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!
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.
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.
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.
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.