It’s 4.30am on the last Tuesday in January. I’m wide awake. The Buscopan has done nothing, and I’m a mug of Twinings away from overdosing on Peppermint. I shift my position in bed from my side to my back, with some difficulty. It’s getting hard to breathe. I check my phone for the time. I’m meeting friends later in the morning to discuss putting on a comedy night, and then I’m getting the train to Hull to see a play and see my friends from the Christmas acting job. Then I’ve got that poetry reading Wednesday night. I have shit to do, and no GP in London. I decide in the dark that I need to go to A&E and beg them to fix me. Burst my stomach with a pin, slowly let me out like a tyre, hug me until I am gas-free. Anything.
I get an Uber to my nearest hospital. I’m hoping that due to it being a weekday and the wee small hours of the morning, that there won’t be a long wait and I’ll be able to get back to my flat by 8am to grab my stuff and head to meet my friends. I give my details to the woman at the desk, and tell her I’m having really bad stomach pain. I fill out a form with my details and those of my (Yorkshire based) GP and wait in the waiting room. It is fairly empty, and I take a seat and try to distract myself from the searing pain in my lower back and abdomen. It’s not too long before I go through to talk to a nurse about my symptoms.
I answer a lot of questions I’ve answered before.
‘When did the pain start?’
‘About a week ago.’
‘And the bloating?’
‘Just less than a week ago.’
‘Any change in your bowel habits?’
‘Erm, a bit. But that’s because I’ve not really been able to eat.’
‘Why haven’t you been able to eat?’
‘Because my stomach gets bigger, so the pain gets worse.’
‘Are you sexually active?’
I hate that question. I’ve always been too proud to ask what it really means. Does it mean have you had sex EVER? And therefore activated the setting that means you are now a sexually active person? Or does it mean you’re actively having sex? Like every day? That sex is an activity that you partake in regularly, like tennis or trainspotting?
‘… Yes, I am.’
I’ve not played tennis since I was in year 7.
‘Is there any chance you could be pregnant?’
I’ve had sex since then though.
‘No.’
‘Do you have a regular partner?’
Not that I had sex when I was in year 7.
‘No.’
She gives me another test tube for a urine sample and she takes some blood. She feels my belly. She does that same tapping motion with two fingers. She gets me to lie on my side. She taps again.
‘Hm. Okay. We’ll wait for these blood and urine results and then see what the doctor says. It’ll be about an hour, are you alright to wait in the waiting room for a bit longer?’
I go out to the waiting room again, and text my Mum and Dad to let them know what’s going on. My brother has just flown to South America and I make a joke about the wrong child calling them from A&E.
There’s a man in the waiting room with a big green coat on and one of his trouser legs rolled up. He comes towards me.
‘What are you in for?’ He says, looking me up and down. I take one of my headphones out.
‘i’m having stomach pain,’
‘What have you come here for? You should go to your GP,’
‘I don’t have one here,’ I tell him.
‘There’s a vet down the road, try there.’
I pause. I double check his tone in my immediate memory for any sign of insult. He smiles absently, and pulls out a soggy pouch of tobacco, some green Rizla with little squares of the cover torn off.
‘My missus went to prison yesterday. I’m meant to be visiting her but my legs gone all swollen.’
He starts to sing the Beatles song that you sing when life has to go on, and wanders away to smoke his cigarette.
When I’m called back in, I go to the same bed. The same nurse comes back and tells me there’s nothing in my blood test but a little abnormality in my liver profile.
‘Oh.’ I say. ‘That could be this Romanian brew my flatmate once made me drink.’
The nurse looks at me.
‘I think it’s more likely to be gall stones,’
I had kidney stones when I was 13, and I suppose the abdomen pain is sort of similar, but…
‘What about all the gas in my tummy?’
The nurse isn’t sure. ‘I’ve paged a doctor and one of our surgical team to come and see you. They might be a little while, but if you like you can stay here where it’s quiet and wait?’
I want to hug her. She smiles, and leaves for her next patient – maybe my friend in the green coat.
It’s about 8.15 at this point. I’m meant to be meeting my friends at 10am, and I message them to tell them it’s looking unlikely I’ll make it. Then I’m supposed to catch my train. It’s not looking like I’ll be going to Hull either. Even if I get let out of A&E in time to catch it, I’ll be knackered, and I have to bring my huge stomach with me.
The doctor and surgeon finally come to see me. They both have a good old routine tap on my stomach and then I lie on my side, and then my other side, and then I sit up and they listen to my heartbeat, and then they both stand up straight and smile apologetically.
‘I don’t really know, Rosa. I think it could be worth getting you an ultrasound tomorrow morning.’
‘Okay. I need to be somewhere by 8pm,’ I say, thinking of the poetry reading. I don’t want to cancel anymore plans.
They book it for 9am the next morning, Wednesday 31st. I get the bus back to my flat and sleep until 5pm.
I imagine myself gliding through to my ultrasound and getting out by 10am, then spending the day readying myself to read some poems. I get to ambulatory care on time and give in my name and am pointed towards the already half-full waiting room. I take a seat.
‘What are you in for?’
I look up and it’s my swollen legged man from yesterday. He’s not addressing me, but another girl who is sat a few seats away. I don’t hear her response, but I hear his.
‘I’m supposed to be visiting my girlfriend in prison today. But look at my leg, it’s gone all big.’
I wonder if he’s slept.
I get seen at 10.30 for my ultrasound. The technician is silent as the nurse directs me to the reclining bed and tells me to roll my top up, and gives me some tissue to tuck into my leggings. The technician comes over and gets straight down to business.
‘It’s your stomach, right?’
‘Yeah,’
‘This’ll be quite cold,’
She rolls the jelly covered scanner over my belly. Under my ribs. Down to my pelvis. I roll over, she has a little look at my back. And then my belly again. She frowns.
‘You seem to have quite a lot of fluid around your organs,’ she says. Her tone is softer. She looks at my face for the first time.
‘Not gas?’ I ask. ‘I thought it was gas,’
‘No, it’s definitely fluid.’ She turns the screen to me. For some reason all I can see is a baby. It’s head, it’s little feet. I think about having to give up wine for nine whole months.
‘You see all this black stuff? It’s not meant to be here. This is your liver, your bowels… and did you know one of your kidneys is down in your pelvis instead of in your back? Have you had a transplant?’
‘Er… I did know that, yeah.’ I was told that when I’d had kidney stones as a child. ‘I’ve never had a transplant.’
‘That’s quite rare. But yeah, this fluid is all around most of your organs, and from what I can see, the non-pelvic kidney is a little bit enflamed.’
‘The nurse in A&E said I might have gallstones.’
‘I think we need to book you in for a CT scan, because I can’t pick up anything like that on here. I’ll put you on a separate surgeon’s list. We’ll make sure you get seen quickly, don’t worry.’
Again, I feel like hugging her, despite her lack of pleasantries in the beginning. I think about the already packed waiting room. I suppose she doesn’t have much time for pleasantries.
‘When’s your baby due?’ The woman next to me asks, as I sit down again.
‘I’m not pregnant,’ I tell her.
‘Oh. I thought you were.’
‘No.’
‘Oh.’
At this point I can’t remember the last time I ate anything, and I’ve been advised to be nil by mouth for the CT scan. It’s 2pm when I get seen. It’s relatively quick – I lie on my back and am rolled slowly back and forth into a tube, and have to hold my breath whilst they take X-Ray pictures. My results will be ready in an hour, which seems like ample time to go and get some porridge and a cup of tea from the cafe. However, when I get back, the receptionist clocks me and stands up.
‘Are you Rosa…’ she pauses, like everyone does when they try to read my surname off of a page. I’m not feeling cruel enough to listen to her try.
‘Yes,’
‘The surgeons came to see you when you weren’t here,’
‘Oh, sorry,’ that was fast. I’d only been gone about twenty minutes. I’ve not even finished my porridge. I’m directed to a little side room off the main waiting room, where I sit on the bed and take some footage for my Instagram story.
‘Someone just asked me when my baby was due I am done’ I write over a picture of my tired face.
Three surgeons enter the room, and in retrospect I realise that seems a bit excessive to deliver the news of one CT scan. But my experiences in hospitals are thankfully limited, so I smile and hilariously welcome them to my humble abode and tell them they don’t need to take their shoes off. No one laughs. The most senior surgeon sits down and begins with a sentence that I’m unaware I’m going to become very familiar with.
‘Now, Rosa, we’ve had a look at your results,’
I nod.
‘And what we’ve found is lots and lots of fluid all around your organs. This is what will be causing all the bloating, the discomfort. We don’t know what this is at the moment, so we’re going to take a little sample of that later and get that sent off to be tested.’
He pauses to make sure I’m taking all of this in – and I am, but I’m also wondering where I can get a colour code chart so I know what the colour of your scrubs mean.
‘We also found, in your left side, down in your pelvis, a large mass. It’s about 15cm. And it’s got it’s own blood supply, by the look of it,’
‘No, that’s just my weird kidney,’ I say, eating a spoonful of porridge.
He has a very kind smile. ‘No, although we have noticed your pelvic kidney. It’s quite rare, but this is a separate mass. We do need to get it checked out, and make sure it’s nothing to worry about, so we’ll book you in for an internal ultrasound and an MRI scan tonight.’ Kind smile again. ‘You’re very young, and very healthy though. It won’t be anything sinister. Just need to rule everything out.’
I shrug. ‘Okay.’
One of the other surgeons takes a sample of the fluid from my stomach. He is really good looking.
‘I smell of porridge,’ I tell him.
‘Sharp scratch coming up,’ he tells my stomach.
He draws this mystery fluid slowly through the needle, and I’m a bit shocked at the colour.
‘It’s very blood-stained,’ the surgeon says. I don’t really know what that means. I’m sent out to the waiting room again, and it’s about 6pm now. Whilst I wait for the next scan, I go through all the options of what this could be. I google.
Eptopic pregnancy
Did you mean Ectopic pregnancy?
Do you get negative pregnancy tests with ectopic pregnancy tests?
An ectopic pregnancy is when a fertilised egg implants itself outside of the womb, usually in one of the fallopian tubes.
Polycistic ovaries
Did you mean Polycystic ovaries?
Can you get an epptopic pregnancy if you’ve not had sex?
Endo
Endomitritios
Endimetriotios
Endomet –
‘Rosa – Hes – Hesmond…’
‘Yeah,’
I am taken to my next ultrasound, this time in a wheelchair by a porter. It’s in the maternity ward of the hospital this time, and as we pull up to reception the nurses look puzzled.
‘Ultrasound?’
The porter nods.
‘How far along is she?’
‘I’m not pregnant,’ I say. The nurses look even more puzzled. I sit in my wheelchair whilst some phone calls are made. The maternity ward is apparently closing, but the gynaecology team have asked to keep it open to perform the ultrasound scan. I feel bad. I feel like I’m wasting everybody’s time.
An internal ultrasound is different from the one we associate with pregnant women. There’s jelly, there’s a black and white image on a screen, but there’s a lot more leg-opening and vagina-showing. I resist the temptation to make inappropriate jokes to the two gynaecologists who are poking about in there. One is female, and keeps me talking, whilst the other is male and very seriously examining the contents of my womb. It’s only when the gynaecologist starts to call for a second, a third, and then a fourth member of his team for extra opinions that I start to feel a bit weird. They’re comparing my ovaries.
‘See that one there? And then this one… and can you see these over here?’
The female gynaecologist keeps chatting and asking if I’m okay. Finally, I am told to wipe the jelly from in and around my lower body and get changed, and that the head of gynaecology wants to talk to me. It’s not exactly being told the head of casting at a well respected theatre wants to talk to you, but I still feel a bit important.
She’s one of the most no bullshit women I’ve ever met. She sits down opposite me and gets straight to it. After nearly twelve hours at this hospital, I am grateful.
‘We’ve found the mass,’ she tells me, ‘along with several other abnormal growths in your lymphs, your stomach lining and your omentum,’
What the fuck is an omentum?
‘We need to do an MRI scan to figure out how abnormal,’ she continues.
How do I have organs in my body that I didn’t know existed?
‘So we’ll keep you in this evening and do the scan first thing tomorrow morning,’
Is the omentum even an organ? Where is it? WHY DO I HAVE ONE AND WHY HAS NO ONE EVER TOLD ME ABOUT IT?
I’m taken down to A&E, where I am to wait until a bed becomes available in another ward. It’s a completely different scene from the other night. It’s heaving, there are beds from ambulances queuing up and there must be fifty people lined up along the walls on plastic seats. The gynaecologist who chatted to me during my ultrasound finds me a chair from another ward and gets me some pain relief. I sit next to an elderly gentleman with a bleeding nose and wonder how long it’ll be until I manage to get a bed. I text my flatmate Lizzie to bring me an overnight bag, and when she turns up she looks at the heaving, noisy waiting room and takes the initiative I am too exhausted to take.
‘You need your own bed. You’ll be here til 5am,’
‘But they told me to wait. I need to be here for my ultrasound.’
‘You’ll be knackered, you’re better off coming home and eating a proper meal and having a bath, and you can come back as early as they need tomorrow morning.’
She manages to flag down a nurse and tell her the new plan, and to my astonishment, it works. Someone comes to remove the cannula from my hand and tell me I’m expected back in the maternity ward at 8.30am the next morning.
I sleep. I don’t feel anything. I don’t think too much. Polycystic ovaries? Endometriosis? Too tired to google. Too tired to create my own answers.
The MRI is loud and long, and I have to wait for the results in the maternity ward. The lovely gynae doctor from the night before puts me in a side room before another well-meaning expectant mother smiles towards my tummy and asks me about baby names.
About two hours later, a consultant comes to see me.
‘We’ve got the results of your MRI, Rosa,’ she says.
I sit up with some difficulty. She hesitates.
‘Is… is someone coming to join you at any point today?’
‘My mum,’ I say. She should be here in the next hour.
‘Okay. Well, we might wait until then. Sometimes it’s good to just have an extra pair of ears, just so you’re hearing all the correct information,’
She leaves the room. I lie back on my bed and press play on the episode of ‘The End of the Fucking World’ I am watching.
And for the first time, I think:
‘I have cancer.’
Thanks so much everyone who has shared this blog and got in touch to tell me they’ve enjoyed it. It means so much. Sorry this post is late, I am recovering from my operation to have my left ovary, Fallopian tube, and that damn omentum removed. The surgery went well, and I’m waiting to hear results of the biopsies taken! x
Rosa, your writing demonstrates another of your many talents. It is captivating. Sending you love. Karen & Milly xxx
LikeLiked by 1 person
What a women u are -a brilliant blog sending love and much respect x
LikeLiked by 1 person
You are bloody amazing Rosa. X
LikeLike
Just yr in my thoughts and best wishes,im very moved by yr writing.yr a warrier.
Sarah.x
LikeLike
Lovely Rosa, we’ve never met but I feel like I know you through Ju, who is a dear friend. I’ve been following your journey and now read more from Madame Ovary (ace name). You write with such grace, eloquence, humour and humility. Thanks for sharing your story and well bloody done you. Much love, Sara xxx
LikeLiked by 1 person
Exceptional writing …. I feel like I’m in the room with you … you have an amazing talent xxxx
LikeLiked by 1 person
Brilliant Rosa. You’re a legend. I hope the op recovery goes well and you get some good news from the biopsies. X
LikeLike
Another brilliant post Rosa. But more importantly as this time, I am sending you much love and thoughts for a speedy recovery from your recent op…..brave woman you!! xxx
LikeLike
I feel totally inadequate writing anything Rosa as you write so amazingly. Just wanted to let you know that you are being thought of and wished the very best. Big hug – Lewis’s Mum xx
LikeLike
Oh Rosa, you write so well but I so wish you didn’t have this story to tell. I am keeping absolutely everything crossed that your biopsy results are the best! Wishing you continued strength & humour you brave and funny woman xx
LikeLiked by 1 person
Oh Rosa, you write so well but I so wish you didn’t have this story to tell. I am keeping absolutely everything crossed that your biopsy results are the best! Wishing you continued strength & humour you brave and funny woman xx
LikeLike
This writing is so effing good. Keep doing it. Keep doing you.
LikeLike
Hun, you are in my thoughts and best wishes xx The writing is spectacular! I hope all goes well, you are one crazy strong woman.
LikeLiked by 1 person
Oh my goodness what an absolute warrior you are and an incredible writer. Thankyou for sharing your story, it is an honour to read it. Wishing you positivity and strength xx
LikeLiked by 1 person
Stay strong young lady love and 🙏for you through this terrible journey 💕
LikeLike
Beautiful writing ❤️
LikeLike
Wow you are amazing. So sorry to hear what you’re going through but you’re an amazing writer and I really, really hope your biopsy results are clear x
LikeLiked by 1 person
You’re hilarious and such an inspiration for turning this painful and awful experience into something so honest and funny. Strength and power to you Rosa xxxxx
LikeLiked by 1 person
You’re a natural at this, Rosa! Keep ’em coming and good luck with those test results. Lovely to see you last week. Kate x
LikeLiked by 1 person
I know this has truly helped many patients at Leeds and undoubtedly beyond.
Also, don’t really do English but I have a feeling this is outstanding writing.
Often in my thoughts xx
Rowls
LikeLiked by 1 person
Love and miss you Sam. Can’t wait to see you soon xxxxxx
LikeLike
You’re wonderful!!! And a fantastic writer. Stay strong! Xx
LikeLike
Beauitiful writing, Rosa – I hope it helps you and that you will keep it up long term – you have a real talent and a wonderful sense of humour. Also, Madame Ovary is the best title ever – I look forward to reading your next installment! All the best, Diane
(I used to work with your dad…nearly 30 years ago!)
LikeLiked by 1 person
So sorry to read this. It is so well written and takes me back to my journey 4.5 years ago when I was also diagnosed with OC. All the best and I look forward to the next instalment.
LikeLiked by 1 person
Dear Rosa, I have only read this this introductory blog and I’m gobsmacked. Forget the acting, your talent is the written word. You should be writing plays. I can’t wait to read on.
It was a pleasure meeting you in Mijas and now I can add that it was also an honour. Keep well and smiling.
Grace Frankel
LikeLike
Dear Grace,
Thank you so much for reading and for taking the time to comment, it means so much to me. I had the time of my life in Mijas, and I will always be so grateful for that week you allowed us to stay there. It’s such a pleasure to know you! all my love, Rosa
LikeLike