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.
31 thoughts on “No Blood, No Fun, No Apologies”
All I can say, Rosa, that although it was hard for you to write, the absence of ‘funny bits’ did not detract from the sheer compulsion I felt when reading it….compulsion to get to the next paragraph and see where it left you…and the next…and the next…
Love you, you amazing young woman! xxx
I’m sorry you’re going through this experience but your blog is a fascinating read. Does it sound wrong that I’m looking forward to the next instalment? All the very best. A.
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Thanks for the update Rosa. Love you 😘
This is the best one yet. Thank you for writing x
You’re amazing Rosa. Funny is so over rated these days. Now “intelligence” “eloquence” and “honesty” now they’re in fashion at the moment. Funny will come back just like tank tops one day 😉💐
Oh Rosa, what a horrific experience. You are a fun and funny person but absolutely don’t have to be all the time. Especially through this. Your blog is fascinating (I think I’ve finally found an adjective I’m happy with). I am so sorry you have had to experience this. Lots of love xxx
Thank you for sharing this with us, Rosa. The good news is your beautiful flame locks will grow back.
We’re all praying and cheering for you from across the pond.
The Kugman Family
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Bloody hell Rosa. That’s the most astonishing blog, telling it how it really is. All I can say is you make me feel so humble. I’ve got serious RA and am in heaps of pain and having MRI and CT scans pre knee replacement. . However your blog has shut me up and what on earth am I whinging for.
I absolutely am in awe of you. Going through such a horrendous experience at your young age. I can only wish you a good result and freedom from pain
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I’m an ex nurse and mother of five. Thank you for this incredibly honest and beautifully written insight into your current world. Sending you positive vibes and best wishes and I’m so sorry you’re going through this. Xx
I have been reading your blog since the beginning and already thought you were awe inspiring, but having read this and realised what you’ve been through the earlier posts take on a new light. You are incredible xxx
hair or no hair, funny or not funny, i love you the most when you’re just honest Rosa.
I read your blog via Julie Hesmondhalgh. Twenty three. Keep writing. You could have split it into two blogs. The first ending on the photograph of you. It is beautiful writing. Keep going keep going. In al senses keep going. Best Wishes Lemn
Rosa, I have read all of your blogs and am in awe of your bravery, wit and eloquence. Lots of love to you. Xxx
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Charlotte, I appreciate this so much. I don’t know if you know, but someone close to you (I don’t know rules about anonymity etc) helped me A LOT during this journey. I am forever grateful to them. Loads of love xxxxx
I didn’t know anything about that- confidentiality etc- and have only just twigged what you must mean! That makes me happy to hear. What a small world. Xxxx
You are a beautiful writer and person. I don’t know you personally but am a friend/colleague of your father’s, who is one of the loveliest people I have ever met. I see he has passed this trait onto you. Sending sympathy, warm feelings and lots of hope from the States. Thank you for sharing what you are going through. It means a lot and it matters.
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I read your amazing blog without drawing breath. You are so talented Rosa. I’m sure your writing will help others and I hope it has helped you too. So pleased you are out of this place now. Lots of love xx
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Rosa, your writing is as perfect as your taste in music. If you need any advice or help with hair at any point then I’m your woman. Julie could put us in touch.. and we can discuss theories on why D’angelo has just cancelled another tour.
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Sounds like a plan!
Thank you for sharing xxxx my close friend is very poorly right now and about to go back to the Christie. My hubby is on Thursday visitings to him. I’m going to share your blog so that he gains some insight xxxx so precious
You’re amazing. No need to be funny. Or make sense of this. Put down whatever words help you. It’s all vividly painful insightful and puts life into new perspective. Thank you
You are a talented writer Rosa, and by all accounts an amazing young woman.
Sending you lots of love. Xxx
Well, this has made me cry a bit and laugh too and “craugh” which almost woke my family up at 6am. You are a very funny writer and you make a scary and unpleasant experience a very compelling and humorous read. Thank you! Mostly for snapping me out of self pity and self loathing. I love that you made a promise to your body not to fuck it about any more. I really think you will be ok and that this will make you stronger and happier (eventually) than anything or anyone. You are a true inspiration and a very brave person. Thank you for sharing. Lots of love, xxx
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Rosa, your description of the awful things you have been going through is spectacular in its honesty and I will remember the slug with the fur coat forever. I cannot imagine how hard this is to write but you do so beautifully, I feel honoured to be reading your blog. With much love from Karen and Milly xxxx
I am older than you but I have been there, and out the other side. I spent a whole day weeping which can’t have been great for other patients. But you just have to do what you have to do, look after yourself, be selfish, and bloody well complain if you need to.
Rosa, I found your blog through Twitter – Tamzin Outhwaite shared it. Thank you so much for your honesty and I am sorry you are going through all of this. You are a beautiful writer. Lots of Love Stacie-Mai xxxx
Still sending you all the luck in the world and thanks again for sharing your incredible and difficult journey xx
Rosa. I’m an oncology nurse. Your blog reminded me again to remember compassion in my job. I like to think I’m always compassionate, but reading from a patient perspective once again opens my eyes to what a person in your situation thinks and feels. It’s awful that you are going through this but I hope you meet more than a few supportive, good and kind people along your journey. I want to be one of the good ones out there. You’ve inspired me. Fantastic writing. I wish you all the very best with your treatment xx
As someone who was diagnosed with a borderline ovarian tumor I would like to think I know some of the feelings that you have been through. I was diagnosed when I was 20, well into my second year at uni. It honestly broke me and I had a really hard time with it. I ended up taking an entire year off my studies and having surgery to remove my right ovary. My perspective on life has changed and I’ve really begun to appreciate the smaller things in life. Never take anything for granted- including your health! It’s inspiring to see you share your journey with everyone, as only the closest family and friends really know why I took the year off. Congratulations on your recent good news with your NED! I’m only a month away until I start uni again and feeling pretty good. Look after yourself and I look forward to reading your future posts x
By damn, Rosa, I did an excellent job teaching you to write! 😉
Tons and tons of love xxx