I am woken up suddenly by the sharp drawing back of the blue curtains around my bed. It is still dark outside, and the lights haven’t been turned on yet. About eight people walk in. This is my team. My doctor, my clinical nurse specialist, registrar and more people who’s job titles I don’t understand introduce themselves. They are nice, but they are in a rush.
‘My parents aren’t here yet,’ I say. I am so thirsty.
‘We’ll come back tomorrow when they are.’ Doctor L says, kindly. ‘But we need to move you towards treatment as fast as possible so your situation doesn’t get any worse, Rosa. We all wanted to come and discuss exactly what will be happening to you over the next few days. Are you ready?’
I’m about as ready to receive medical information and terminology as I am to leap out of bed and start leading these doctors in an English country dance, but I nod.
‘So, the first thing would be to get that drain in and the ascites out,’ Doctor L begins.
I keep nodding.
‘All whilst keeping that pain in control.’ Excellent. More nodding.
‘Then we’ll take a biopsy to make sure this tumour is definitely a germ cell. It will take a while for those results to come back, but because your tumour markers are extremely high we’ll have to start you on chemotherapy, most likely on Monday – ’
I stop nodding.
‘I thought I was having – um, the doctor at the last hospital, she said… she said I’d be just having radiotherapy and maybe surgery?’
‘No, there won’t be any radiotherapy if it’s a germ cell tumour. These tumours are liquid, almost, rather than hard and won’t respond to any radio. However they do respond extremely well to chemo, so the sooner we start that, the sooner we can decide the next steps. I think we’ll need about 4-6 rounds. We’ll start off with EP, which is a chemo made up of eptoposide and cisplatin. It’s fairly gentle, in fact, there’s some info about it here – ’
I’m not listening anymore. I feel my long, red hair falling down my back like tears.
Doctor L has to go, as does her team, who have all been very silent but sympathetically smiling. She promises me she’ll keep pushing for this drain. Before she leaves, she apologises and tells me her and most of the team will be away for the next week, as it is February half term. I’m too overwhelmed to make a joke about my impeccable timing. She goes.
Germ cell. Tumour markers. Eptoposide. I add the words to my list of things I have to start understanding.
‘Are you alright?’
It’s the woman from the next bed. The one who told me to shut my machine up yesterday. I look at her. She has no hair. I burst into tears.
‘Oh, my love,’ she says. ‘Can I come and give you a hug?’
I nod. She heaves herself up from her bed and sits with me on the edge of mine, and wraps me up in her arms.
‘Don’t cry, love,’ she says.
‘I’m sorry,’ I sob into her shoulder. ‘I just found out I’m having chemotherapy and I didn’t want to have it it sounds so scary and I thought I was having radiotherapy and I only found out I had cancer on Thursday and my parents aren’t here and I’m – I’m – I’m only twenty three!’ I wail. Another woman has hobbled over from her bed. She hands me a tissue and we all sit on my bed, and they rub my back. The first one, Bridget, tells me about chemo and admits that, yes it’s shit, and yes, you lose your hair, and yes, it damages your fertility. I suck up a huge, heaving breath that is threatening to be a scream. I push my hand into my eyes and nose.
‘But it works, love. It’s better than the other option.’ Bridget tells me. I let the tears out and I get snot all over her hospital gown.
‘I’m sorry,’ I say again.
‘You have nothing to be sorry for.’ She hugs me again.
I can’t think properly. The intravenous fluids don’t stop the thirst, which makes it hard to concentrate on anything else apart from the thick, dry tongue that is flopping around my mouth like a drunk slug in a fur coat.
I’m promised by the nurses the drain will happen later. Mum arrives with a proper suitcase with extra clothes and toiletries.
‘I thought you could use the sponge for your mouth,’ she admits. ‘And sort of keep your lips wet.’
I’ve started to tell people about what’s going on. I get an email from my agent with an audition. I get my dad to ring them and tell them I won’t be able to work for a while. My mouth’s too dry to speak to them myself, but also I’m terrified I will be dropped. I get a message from Tinder Boy asking if I’m okay. I can’t bring myself to reply. What an unfair position to put someone in. ‘Hi, great first date, would you like the second one to be in hospital? I’m not allowed to eat or drink, but I’m sure they’d be able to sort you out with a juice box, and I’ll give you a bit of my morphine if you’re into that.’
My uncle comes to visit. We sit in the dark blue of the bay I’m on with the curtain pulled across and I try and talk.
‘I’m sorry I’m not being a better host,’ I keep saying. The morphine dehydrates me, but it does help with the pain I’m still feeling in my stomach. My parents are anxious that the team came to visit me without them there. They don’t know the plan, and neither do I, really.
It’s soon revealed that the drain won’t be able to be put in until tomorrow, by a nurse who is a lot less pleasant than the one on last night’s shift.
‘Please can I drink something, then?’ I rasp.
‘No. Just sip water and then spit it out. That will keep your mouth from getting dry. Nil by mouth means nil by mouth.’
I accidentally open my front camera on my phone and see myself for the first time. I’m still in the same clothes I turned up to A&E in. My hair is matted and my face is grey. I take a picture, being sure not to change the expression I have on my face. I feel like I need to remember what this feels like.
The next day two porters turn up. He has no wheelchair. He tells me I will be taken down to the drain place in my bed. My mum and I and the porters set off. I have two plastic cups in my hands. One is full of water, which I drink from, and the other is empty, which I spit into. I can no longer lift myself because my stomach is so painful and huge, so I have to use a straw. Turns out the place the drain gets fitted is an ultrasound room, because they use that technology to find the right place to attach it. I really like the two people who are in charge of it all. I’m unsure of if they’re doctors or surgeons, or something else entirely, but they are really friendly and joke around with me as they prepare the local anaesthetic and drain. They also decide to take the biopsy at the same time so I don’t have to come back down again. I keep apologising for my weak state.
‘Usually I’m a lot funnier than this,’ I keep saying in between spits into my cup.
No one can prepare you for the size of a biopsy needle. I’m not squeamish, but watching something like that pierce your skin, no matter how numb it is, is truly weird. They attach the drain to the other side from the biopsy, and immediately the bag fills up with dark, black liquid.
‘Ah,’ one of the doctors/surgeons say. ‘Wow. That’s filling up very quickly.’
‘And it’s very blood stained.’ The other one adds. They tell my mum that this means the nurses will keep checking my blood pressure and taking blood from my arm to make sure I don’t become ill. Well, more ill. I am wheeled back up to the ward, and I hold the bag of fluid to stop it rolling off the bed and taking part of me with it. It is warm. The measure on the bag says it’s filled to 2 litres already.
Now everything becomes extremely blurry and hard to remember. I turn my phone off. I tell my parents to pass on a message to my friends to not come and visit me until I’m feeling better. I start this disgusting burping, caused by taking Oramorph on an empty stomach. I throw up, a lot. Bridget is extremely kind to me, the unpleasant nurse is not. She reaches past me and picks up my file. She writes ‘BILE’ on a sheet of paper next to the time it currently is, and walks off. I decide to start drinking water. That’ll show her. I throw up again. The nurses empty the drain bag, and let more come out. My blood pressure is fucked. My haemoglobin drops below 70. I don’t know what that means but apparently it has something to do with why I’m unable to lift my head or speak, and why I’m suddenly covered in bruises.
Due to my blood loss, it is decided I need blood transfusions before any chemo can happen. At this point I don’t listen to anything.
‘I just want to sleep.’ I mumble to my parents.
When I wake up, everyone around me seems to be covered in plastic and wearing masks.
‘What’s happened?’ I ask.
‘The woman opposite you brought flu into the ward,’ my Mum says. ‘So we all need to wear these.’ She looks very skeptical that the flimsy plastic apron is going to do anything when it comes to fighting flu off.
I’m told that the ward I’m on needs to be evacuated, and they’ll find me a bed on the oncology and haematology ward. However, because I’ve been exposed to flu, I’ll need to start taking Tamiflu and be in a private room. We just need to wait for one to become free, then my blood transfusion can start, and then the chemo. They’re also going to remove my drain, because it’s clearly not making me feel better.
‘This means you’ll have that swollen stomach for longer.’ the unfriendly nurse says.
‘I DON’T CARE!!!!’ I scream. ‘I DON’T GIVE A FUCK WHAT YOU DO TO ME, BECAUSE YOU’VE ALREADY TAKEN FIVE LITRES OF MY BLOOD AND STUCK A NEEDLE THE SIZE OF MY FOREARM INTO MY BELLY, AND TOLD ME I’M GOING TO LOSE ALL MY HAIR, AND NOT LET ME EAT OR DRINK FOR THREE DAYS, AND EXPOSED ME TO FLU, YOU REALLY THINK THIS BIG FAT STOMACH WEIGHING ME DOWN FOR ANOTHER COUPLE OF DAYS IS GOING TO BOTHER ME AT THIS POINT???? I TRULY, TRULY DON’T CARE WHAT ELSE LIFE HAS TO SHIT ON ME, BECAUSE MY LIPS ARE BLEEDING AND MY HEAD HURTS AND I’VE GOT A BIG TUMOR GROWING ON MY CHANCE OF HAVING KIDS SO DO ME A FAVOUR AND FUCK OFF.’
I don’t say that. It’s not her fault. She’s probably unfriendly because she’s having a tough few days. She’s surrounded by ill people, the ward is understaffed and over populated, and now full of flu. A doctor comes to remove the drain, and after that I fall asleep. When I wake up, my bed and I are being wheeled towards a lift. I have no idea whether it’s morning or night, and we finally arrive in a different floor and I am put in the promised private room. I am reattached to my drip, and introduced to smiling, friendly nurses. I don’t have the energy to smile back but I like them. My team returns, before they go off for half term, to update my parents and tell them about the chemo. My chemo nurse says she’s booked me to have a PICC line put in, which will save my veins from being ruined by the treatment through a cannula. It will lead directly from my arm into an artery and I need to get it put in before my blood transfusion starts that evening.
‘We just need to wait for a porter,’ she tells me.
We wait. And wait. Eventually my chemo nurse rolls her sleeves up and marches out of the room. She returns with a wheelchair. ‘Are you okay to sit up in this, Rosa?’
She and my mum load me into it, and my chemo nurse pushes me all the way to the cancer centre across the road, so we make my appointment in time. In my head I thank her hundreds of times.
The two people who fit my PICC line are hilarious. They make constant jokes and seem to have a double act routine sorted. I’m completely unaware something is being attached to an artery, and even manage a smile.
‘Sorry,’ I rasp. ‘I’m usually a lot more fun than this,’
The one who is fixing an orange ‘secure-a-cath’ to my skin looks down at me fondly.
‘You don’t have to be fun right now.’
I’ve stopped crying by this point. I don’t feel anxiety. I don’t feel fear. I don’t ask people’s names or questions. I have no interest in what the chemo is and what kind of tumour I have and why it’s different from an epithelial one. I let my mum do the talking. I nod when I need to, shake my head when I need to, smile at people who are kind to me. I don’t have enough blood in my body or my brain to do anything else. My transfusion is attached to my brand new PICC line and I watch as someone else’s blood creeps into my arm. I have a bruise the size of a melon on my hip from where the biopsy was taken, another on the opposite side from the drain. My stomach looks bigger than before the drain. My legs are bloated from not walking anywhere. My skin is milk, if milk was grey. Alone in my room, I sink back into my pillows and remember how much I hated my body as a teenager. I would watch myself grow and widen and fill with total disgust, mistaking puberty with becoming something unacceptable for a teenager to be: fat.
This is my body hating me back.
‘I promise,’ I tell her quietly. ‘If we get better, I will never fuck you about again.’
This post was quite hard to write, and I think there’s the possibility it might be hard to read. It’s interesting, because whilst writing it I kept thinking ‘this hasn’t got many funny bits in, I hope people still read it’, which is strange because during the experience I’ve just written about I kept apologising for not being as fun as usual. But as I was taught by the people mentioned in the post, I don’t always have to be fun, and I don’t have to be sorry. Some good life lessons there. Thanks Bridget.