Love, Death and Jellyfish

34 young adults are diagnosed with cancer every day. My day is February 1st 2018.

‘Think of it as a sort of apron.’

It’s about 6pm.

‘It hangs down from our stomachs and liver and covers and protects our organs.’

I’ve got cancer.

‘It doesn’t have a vital function, which is why not many people have heard of it.’

But at least I know what an omentum is.

My mum is sat to the left of me, in the same room I had my internal ultrasound in the night before. No Bullshit Head of Gynaecology is sat across from us, behind a desk. The amazing young doctor who distracted me during my scan, helped me get a chair in A&E and put me in a private room to wait for these very MRI results is sat next to her.

‘Is it epithelial?’ My mum is asking.

I don’t know what that means, but No Bullshit replies firmly ‘No. We think what Rosa has is a germ cell tumour, and the treatment options are very optimistic. We don’t treat these tumours at this hospital, but I know a consultant who specialises in them at UCLH. I’ve made her aware of Rosa and I think we can get her transferred over there by Tuesday and get her treatment started, after a biopsy to make sure it’s definitely a germ cell. They’ll probably do a course of radiotherapy and an operation to remove her ovary and the tumour.’

I start crying a bit.

The consultant swiftly pushes a box of tissues across the desk towards me.

‘Don’t worry. You’re going to be in very good hands,’ she tells me. The young doctor smiles sympathetically.

‘Can I get the fluid drained from my stomach first? I don’t know if I can put up with it for much longer.’

The doctor tells me it’s not a very good idea. Starting treatment at this hospital and then transferring would be tricky, and the drain might not work. There was the option to put a drain in and take it home with me, but the chance of infection was extremely high. They will give me paracetamol, ibuprofen and codrydamol, and I am to try and wait the four days until Tuesday morning. The young doctor is going to send my prescription to the pharmacy and I have to go and pick it up now.

My mum and I go back to the side room where our stuff is. I think we’re crying. ‘You can’t tell Grandma,’ I tell my mum. ‘You can’t tell either of them.’ I’m scared it will kill them with worry. We make our way down to the pharmacy. My mum goes to call my dad and I go to pick up the medicine. It’s closing, and the woman denies that my prescription has been sent to them.

‘Where was it sent from?’

I tell her the name of the maternity ward, and the young doctor’s name who prescribed them.

I start crying at the idea of going a whole four days without prescription pain relief, and the woman at the counter bustles round, grabs my wrist and pulls me into what I realise is the staff room.

‘Sit down, lovey,’ she says and stands with her hands on her hips looking down at me. ‘What do you need? A glass of water?’

‘I need that pain relief,’ I sob. ‘Please, I’m having such a horrible time, I just want to go home, I’ve been here since yesterday morning pretty much—’

‘Alright, my love,’ she says. ‘I think I know what’s happened. I’ll sort it,’ and with a glance at my belly, she leaves. She thinks I’m pregnant. Like everyone else. I wonder what she thinks has gone on. That I’ve just found out I’m pregnant after months of not knowing? That I’ve just found out there’s a complication? I decide I don’t care. I won’t correct her if it means she’s off to get my medicine. Although saying that, if the pharmacy is allowed to prescribe these painkillers to what they think is a pregnant woman, I’m pretty sure they’re not going to touch the edges of the pain I’m feeling. Eventually, I get the white and green paper bag of painkillers and I stumble out of the pharmacy into the January dark, to find my Mum. She holds her phone out to me, my Dad’s name lit up on the screen.

I think I’ve been witness to my Dad crying twice. Once at my Grandpa’s funeral, whilst Leonard Cohen’s ‘Anthem’ played. And the other time I don’t remember what it was about because I was so young. It’s not that Dad isn’t an emotional person, I just don’t think he cries when i’m around. I’m glad I haven’t personally reduced my Dad to tears up to this point. I wish I could have kept my track record clean for a little bit longer though. He cries, and I wish he was here. He tells me he’ll come down to London first thing tomorrow.

I sit in the Uber with my Mum, texting my friend Archie who’s just asked what the doctor has said. He knew I was in hospital having tests. I drop the bomb, and then:

Rosa: I’m still in quite a bit of shock but it sounds like they’re going to work fast to sort it out. I’m going to an oncology hospital next week to talk through my options and get a biopsy etc and hopefully they’ll whip it out fast 

Archie: OK good. I can’t imagine how weird this must feel but they move so fast with this shit now it’s incredible

R: Yeah they do. And I’m going to have radiotherapy and then they’ll remove my ovary too

A: But is there a reason they’re not investigating it now as opposed to next week? Like do they think it’s kind of fine?

I type out the information I’ve just been told, asking my Mum to clarify when it’s something I haven’t understood.

R: Basically the first time all the oncology doctors can meet is Tuesday to discuss whether to operate straight away or take a biopsy first. Because there are some other things wrong they need to assess. I don’t know. they’re still not really sure what they’re looking at I don’t think

I’m not sure how I’m remaining so calm, so factual. It’s shock, I think. It carries through when I return to my flat and ring my best friends, my Grandmas, my auntie. I regurgitate the information from No Bullshit, I tell them it will only be a few weeks of miserable hospital visits and then a full recovery in no time at all. It will be over soon. I am not going to die. Don’t worry.

I mustn’t panic or overreact, especially to other people, because it sounds like my odds are good, and the treatment will start quickly. If I act panicked and sad then my family and friends will act panicked and sad, and then they’ll start thinking they need to treat me differently. Eventually they’ll stop saying phrases like ‘bored to death’ and ‘i’m dying for a piss’ because then someone will have put it out there – my mortality. You’re not meant to think ‘I am going to die’ at 23. However, my generation and I have been saying it three times a week since we learnt how to be facetious. On rollercoasters, during our exams, at the prospect of getting up earlier than 9am, when we eat at a buffet, when our crush looks at us, when we watch a video of a baby trying on its glasses and seeing its Mum for the first time, when we’re curled around our duvet at midday with our hangover curled around us, when we see our best friend looking even more beautiful than usual, when we go on a ten minute run. When we’re excited. When we’re shitting ourselves. When we feel love. When we feel ill.

I’ve said it loads. In fact, one of the conversations myself and Tinder Boy had on our perfect date was about Near Death Experiences, and I explicitly told him I had never had a brush with death apart from this one time I was looking at a jellyfish on a beach and a car nearly ran me over because it didn’t see me bent down, inspecting it. Afterwards, all anyone could say to me was ‘you nearly died! You nearly died!’

Cancer isn’t really like that, is it? It’s not a fast car, or a bolt of lightening, or a jellyfish’s fault. It’s uncertain and slow and a lot of options and trials and chances. Death becomes a taboo subject, not a way to describe the way you feel about your cold. I can’t let people know I am worried that it might happen to me.

I soon realise I should have pushed to get the stomach fluid drained. Just because my diagnosis happened, it doesn’t mean the fluid listened, and graciously decided to pause for the weekend. My stomach grows and grows. The pain becomes more acute, especially in my abdomen. My Mum buys me a Tens machine, which looks like a little mp3 player, with four wires that you stick to your back, and it sends little shockwaves through you to ease your pain. She also devises a pain timetable, so I am never letting the medication wear off but I am never exceeding the stated dose. The codrydamol is considerably stronger than the paracetamol or ibuprofen, and I’m scared to take the ibuprofen because I still can’t eat anything, and apparently it’s bad for you if you take it on an empty stomach. It’s not like I need any more stomach problems. All I can eat is Fruit Pastilles lollies and occasionally a smoothie. Anything else puts pressure on the ascites (official name for the stomach fluid). My parents and I decide to take a walk, and the numbness in my right thigh suddenly turns into unbelievable searing pain, from the pressure my huge belly is putting on the nerves in my leg. We have to turn round straight away. I am trapped in my bedroom. My parents don’t leave my side. Lizzie and my other two flatmates, Josh and Michael make a bed of cushions on the carpet in the living room for me and we watch Drag Race together. Lizzie runs me baths using every shower and bath product in the cabinet.

My friends come to visit me immediately, dropping plans and bringing me presents, piling onto my bed and rubbing my belly.

‘I was going to bring you wine, or chocolates,’ says Grace, her eyes full of tears and her arms full of orange lilies. ‘But I thought flowers would be better because they won’t hurt your stomach.’

Teb brings me more flowers, and arranges them on the window ledge, covering the rainy, miserable view of the petrol station opposite. She gets in bed next to me and then gets out again when she sees my mug is empty of tea, and goes to make everyone a cup, including my parents.

Rhi gets the train from Brighton and brings me all her favourite books – from childhood (Cloudbusting by Malorie Blackman) up to the the last year (Sapiens).

‘I wasn’t sure what your brain wanted so I just brought them all,’ she tells me. Kath brings me magazines and two packs of Goddess cards. She does a reading for me. She tells me that my life is about to take on some change, but I will find love to guide me through. I think I already have.

The pain comes to a head on Monday, about midday. I have 24 hours until I meet with my oncology team. My stomach is now more prominent than my breasts, which I admit have never poked eyes out, but it’s getting to the point where I can’t sit up unaided. The painkillers might as well be Tic Tacs.

‘I need to go to A&E,’ I tell my Mum. We agree that they can drain me overnight and then I can go to see my doctor the next day. We call an Uber and pack a few things in a bag and make our way to the new hospital in central. It’s just before rush hour, and the waiting room is absolutely packed. There is a queue out of the automatic doors.

‘How can I help you?’ asks the nurse when we get to the front desk.

‘Er – well – I just got diagnosed with ovarian cancer on Thursday and I’m meant to be starting treatment here tomorrow but I basically have all this fluid in my stomach and I’m just in a lot of pain so I thought I should just come here and see if you can drain it for me?’ I gabble and my voice goes up at the end like a question but it’s actually because I’m trying not to cry.

Once again, the nurse is lovely and hands me a form. I fill it in. This time I have to tick a box that says I have cancer. It’s another ‘ping’ on the bell of reality. I’m seen quickly – I think I push in front of a couple of people with minor ailments who have been there longer, and I feel bad. A broken finger still fucking hurts. My mum and I sit in a side room with the nurse, and we go through my symptoms and my story again. I’m so grateful not to be alone this time. I have a cannula put in, blood tests and urine samples are taken, paracetamol (sigh) is given, my request for a drain is going to be passed on, and a bed is going to be found. I don’t have to wait in the waiting room, but after nearly 6 hours of waiting, my Mum needs to catch the last tube back to her friends house. I know she feels awful leaving me but I think it’s for the best. She leaves me with food that I can’t really bring myself to eat, and tells the nurses she’s leaving and to keep an eye on me. Luckily, I think that gives them a bit of a nudge and a porter arrives five minutes later with a wheelchair to take me to my bed. I’m wheeled belly-first through A&E, past areas where people with bandages on their heads are stood up so that the people with bandages on their legs can sit down. It’s so loud, considering it’s past midnight; all you can hear is talking, and beeping of machines, and sometimes shouting, and then a louder and faster beeping of machines, and trolleys being wheeled, and the thwack of heavy folders being thrown down on desks. The sounds fade behind me as the porter wheels me into the lift. We go up, and out and I am met by a nurse with blond hair. Other than a steady bleeping, and the whisper of his voice, the ward is silent.

‘Can you tell me on a scale of 1-5 how bad the pain is, Rosa?’ He asks, as I am transferred to my bed. It is the outside corner of a six-bed bay. All the others are full of sleeping women. I think for a minute. Kidney stone pain was pretty bad. My tattoos were like a 3. Being told I was wifey material but not worth committing to ‘just at the moment’ was definitely a 5.

‘I’m gonna say a 4,’ I whisper back.

The nurse disappears and comes back with a drip. He attaches a full bag of something to it, and puts it in my cannula.

‘It’s just water,’ he says when he sees my face. He then produces a syringe of something. ‘This is Oramorph,’ he tells me. ‘For your pain.’ I’m baffled, and tentatively hold out my arm. He smiles. My slightly lazy love for etymology kicks in and I realise the ‘Ora’ in ‘oramorph’ means mouth. The syringe is just to make sure I don’t take too much morphine.

‘I’m really thirsty,’ I say. ‘Could I get some water?’

I’m told I will be nil by mouth until my drain gets fitted. The intravenous water will keep me hydrated. We’ll get the drain done first thing in the morning and I’ll still make it in time for my meeting at 1pm. My nurse shows me a button I can press if I need anything in the night, and he leaves.

I text my mum my bed and ward number, and ask her to please buy me some lip balm on the way in tomorrow, as I’m really feeling the thirst and my lips are getting a dry. The machine my drip is attached to starts to bleep. I press my button and try to sit up. The nurse comes back in. ‘Don’t worry,’ he says, turning the sound off. ‘The machines do this quite a lot.’ I lower myself back down and feel myself drifting. The bleeping starts again.

‘Shut that fucking thing off,’ the woman in the bed next to me groans.

‘Sorry,’ I whisper. ‘I don’t know how.’

I fall asleep to the noise that will become the soundtrack to the next few months of my life.

12 thoughts on “Love, Death and Jellyfish

  1. Maggie Watts says:

    Rosa your writing is so compelling, you are an incredibly brave woman being able to write this whilst dealing with all you’re dealing with at such a young age. So unfair that this has come your way – I wish you the absolute best outcome – keep up your amazing attitude xxx

    Liked by 1 person

  2. Janet says:

    Unbelievable this has happened to you. I think I met you on a train when it was stranded near Peterborough and you were just finishing drama college. I’m going to ask every angel there is to fly in and sort this. Properly.
    Janet

    Liked by 1 person

  3. Debbie Haslam says:

    Hi Rosa, I am one of your Auntie Caths best friends and have had updates from her as well as reading your fantastic blog. Your strength is amazing and I’m blown away with your positivity. Take care xxx

    Like

  4. Jo says:

    Hi Rosa,
    Thanks again for sharing your experience. It is very humbling to read and I love your honesty. Sending positive vibes and warm wishes. Keep being the warrior that you clearly are. X

    Like

  5. Charlotte Keatley says:

    What a brave honest woman you are to write this. I don’t think I breathed till I’d finished reading it. I really hope you the treatment is working and you are getting better. Thank you for your courage.

    Like

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