TW: cancer, hospital, mental illness and PTSD.
I sit cross legged with my back against my bed.
‘Every morning I wake up and I thank my body for being here, for being a vessel for my soul to roam this earth in’.
I roll my shoulder so it clicks.
‘In this meditation, I’m actually going to invite you to put your hands on your body – your thigh, your stomach, your chest, and really feel it. And thank it for being here for you – for showing up for you every day and carrying you from place to place.’
I squint an eye open and reach out to touch my phone, just to see if anything’s happened in the last forty seconds since I started being in the moment.
‘After I’ve finished meditating, I take a long walk in the orchard in my backyard, and pluck a fresh apple from the branches, and spend an hour or two reading and eating the fruit that Mother Nature so kindly bares.’
I press pause and crane my neck to look outside my window onto the street in North London. There are loads of dead conkers and quite a lot of kitchen roll that’s been ripped out of someone’s bin bags by a fox. I lean back against my bed and open Instagram.
I say the last words in Madame Ovary and feel weirdly complete as I look out into the audience and see my friends’ big, grinning faces. Afterwards we go and see another three shows, which are oversold and so we share chairs with each other.
‘Let me try your drink,’
‘Is it a beer?’
‘Yeah it’s a beer you dickhead!’
‘Why has it got an orange slice in it?’
We roll out of a venue after seeing the best Fearne Cotton impression ever and find an empty table at a bar and we slide in, bumping into people we know, or people we recognise so therefore act like we know, or people we don’t know but want to be friends with anyway.
‘It was so weird being in a CT scanner again, and I want to write a blog to explain how I feel a bit more coherently because I just gabble on here.’ I say into my phone, filming an Instagram story after I have come out of my first scan since starting chemo, to track the growth or shrink of my tumours. ‘Like the last time I was in a CT scanner was whilst I was getting diagnosed and I thought I had IBS. And it’s just been a very weird three months.’
I post my first post a couple of weeks later. Archie messages me.
‘Your blog is sick. Rosa, I really feel like it could reach so many people. But – and I say this with love – not with that fucking layout you’ve chosen. It looks like you’ve made it on Paint. Please let me ask one of my friends to redesign it for you.’
Julie comes to visit me. I can’t lift my head so she sits next to me and rubs lotion into my hands.
‘I’m either going to live or I’m going to die,’ I tell her. ‘Simple as that.’ We cry together and then we both fall asleep in my hospital room. She leaves me a stack of presents, one of them a notebook. She’s written ‘Write The Fuck Out Of It,’ in the front cover.
I wave at Adam as I walk down his street. I squeeze hand sanitiser into my hand and open the door of the rental car and cough.
‘Don’t worry, it’s not coronavirus,’ I say. We set off.
‘You know what though Adam,’ I say as we drive through London, heading to Cardiff for another stop on the Madame Ovary tour. ‘I’m worried that the cases are gonna get really bad here and the Royal Exchange will get cancelled.’ A big charity event I’m performing at in a few weeks has already been cancelled, and we’re all watching other countries that are badly affected go into ‘lockdowns’.
‘I know,’ says Adam, nodding. He always takes my ‘I’m worried that…’s seriously yet keeps completely calm, as he has since we started working together over a year ago.
‘But it’s only three weeks until the end of March and if this virus does come to the UK, I just don’t see the cases spreading that quickly.’
‘You had long hair in some of your pictures, why did you cut it?’
‘I didn’t. Um, it’s a bit intense telling people this on the first date but I had cancer so I lost it all.’
‘So what kind of things do you write?’
‘Plays, mainly. Well. A play.’
‘Oh cool, what was it about?’
‘Um. It’s a bit intense telling people this on the first date but I had cancer two years ago so I wrote about that.’
A boy I’m speaking to on Hinge asks for my Instagram. I hesitate. We’ve only been speaking for a couple of days, and to be honest, the cases are rising again and there are already rumours of another lockdown happening. Am I realistically gonna meet him? Do I want this boy to silently watch my Instagram stories for the rest of my life? Also, the cancer thing hasn’t come up yet. I decide to just tell him my @. I never hear from him again. I spend a couple of days wondering if it was the cancer thing. If it was my bad, that I should have told him about it before giving him access to some pictures of me bald and in hospital. Then I get over myself and decide to stop being so fair to someone who ghosted me.
It’s my fourth chemo and the nurse pops her head round the curtain.
‘There’s a big tall guy saying he’s your brother here Rosa, shall I let him in?’
I leap up, dragging my chemo pump stand with me and poke my head round the corner. My towering tall little brother Joe stomps down the UCLH gynae ward, ginger hair in his eyes and a questionable beard. He has a great dirty rucksack on his back and looks exactly like he’s been on a long haul flight. I’ve not seen him since way before I was diagnosed and he’s never seen me bald, and he’s come straight from the airport to see me. He’s jet lagged and smelly and probably shouldn’t be amongst all these immunosuppressed people, but my God it’s good to see him. We chat. I’m full of energy. Things are looking good for me. My tumour has shrunk. I just need surgery and I might be out of the woods.
Jen hovers outside my door, a bruise thick and dark under her eye. It’s the earliest I’ve been up in a while, and I stumble out into the morning still pulling on my coat. We start stomping along the Cally road and get coffees. We debrief – what is going to happen to her today, what questions she needs to ask her oncologist and whether the Covid test is going to be in the cancer centre or in the main hospital. Jen has just been told her osteosarcoma has returned in the bones in her face, and she’ll be losing her eye in order to get the cancer out. As we walk to Warren Street, avoiding public transport and keeping a distance from each other and everyone else, Jen takes me routes through London I’ve never seen. ‘I found this community garden!’ She says, or ‘no, don’t go that way, go this way, there’s a way onto the canal path!’ As we reach the cancer centre, the man at the door looks nervous at the prospect of telling us we’re not allowed friends or family in, and he quickly scans us to figure out who’s the patient.
‘Are, are you guys here together?’
‘Together, but separately,’ Jen says, taking one of the disposable masks you have to wear instead of your own one from home.
‘Cancer friends,’ we say and grin. She drops me off at the blood test place, where I go every three months to check for reoccurrence, and she’ll go and find out where to start in her long day of appointments.
‘Keep me posted,’ I tell her, and I head downstairs. As I walk back through London, I can’t find the same paths that Jen lead me down, so I trudge along the busy main road and pick at the sticky tape of my bandage.
‘I actually don’t know if I can do this Adam.’ We’re rehearsing and I’ve just done the panic attack bit of Madame Ovary.
What am I doing? Why have I elected to act out a panic attack every night for a month?
I watch an Instagram story of a woman I follow, alone in hospital, no visitors allowed because of the risk of spread.
My friends crowd into my hospital room to surprise me with a video message from Louis Theroux.
The number of UK COVID deaths reaches 100,000.
I feel the most enormous rage heat my whole body up like a kettle filling a hot water bottle. And then I screw the lid on and keep the heat in until it sort of fades to lukewarm, and then cold. I hate myself for feeling so constantly angry that I can mistake it for normal generational anxiety.
I sit in my Grandma’s garden, five feet away, and pass her her shopping so she can spray it with Dettol before unpacking it.
‘It feels like things are getting better, you know.’ I say.
‘Are they?’ She asks, as if I really know what I’m talking about.
‘I might go back to London. It feels like we might be coming to the end of this soon. And if there is a second wave, I might as well enjoy the bit in-between. Right?’
‘I don’t know love.’
I pass her a pack of Yorkshire tea. I wonder how long it’ll be before shielders can enjoy the bits in between.
‘It won’t be like that.’
‘I don’t know Max, I’ve tried so many different meditation apps and videos and podcasts and I can’t concentrate for long enough.’
‘You definitely don’t have to come but it’s my first time organising a session and I think you’ll enjoy it. Everyone’s super lovely.’ my friend Max has been part of the Buddhist centre for a few years now, and I’ve always been hesitant to go.
I sit in a room, with a mask on and wonder how the fuck I’m meant to concentrate on my breath for two hours. There’s a huge statue in front of me who I’m assuming is Buddha. He looks right at me, half smile playing on his golden lips, as if to say ‘yeah? You’re just trying out some Buddhism are you?’
There’s a small group of us there, smaller than usual, according to the teachers at the centre, because of COVID restrictions.
We spend the first half an hour talking about meditation, the benefits of it, and the practice and what it involves and then 10 minutes sat being mindful of our breath.
I think about my breath. I think about my breath. It goes in. And then out and then straight back into my face because of my mask. I think about my back hurting. I think about when my back hurt when I had cancer. I think about having cancer. And suddenly I remember this time I tried to meditate in hospital it was the Headspace app and they’ve got a special section on dealing with cancer and I remember exactly what it smells like and how I felt and how oramorph tastes and the stinging in my arm caused by my PICC line. I shudder in my seat and squeeze my eyes a bit more. I think about the fact I’m not thinking about my breathing anymore. I think about how fucking terrible I am at meditating. I think about how terrible I am.
‘All we’re inviting you to do is focus and count the out breaths, then the in breaths, then let everything go completely, then focus on where you feel the breath coming in, whether that’s your nose, your lips, it might even be the chest or stomach as it rises and falls.’ The teacher says. Buddha looks at me.
‘That’s all we’re asking, Rosa. Come on.’
Adam and I are on the motorway back from Hull Truck as the clock strikes midnight. It’s officially two years since I was diagnosed and i’ve spent it performing Madame Ovary in the theatre where I first noticed my symptoms, on my first job out of drama school. It feels like a beautiful full circle moment, and Tesh, one of the cast members from that job and now a dear, dear friend comes to see it and we drink in the bar afterwards. He’s doing a version of Oliver Twist at Leeds Playhouse that incorporates BSL and it’ll go on tour all through 2020. I’m so excited to see it.
I go to a Trekstock event – a cancer charity that have been invaluable in looking after me during and after treatment. It’s a panel and Q&A about what it means to have cancer as a person of colour. It’s led by Saima, founder of the amazing Masala Wala cafe in Bromley and Stage 4 lung cancer patient, and Angel, who’s my age and is in remission from Hodgkins Lymphoma. They talk in detail about their experiences in their own culture and community, and the reality of medical racism. They talk about how overwhelming it was to be diagnosed, and how all of the women on their cancer information leaflets were white. Angel mentions that the free wig companies couldn’t cater for her hair. I think about how easy it was for me to get a wig and how everyone looked like me on the charity posters. It wasn’t something I’d even thought about. Angel has a video on her Instagram called ‘Why I Speak Out’ which I urge everyone to watch, because her words are poignant, and brilliant – it’s one of several videos on her account where she is tirelessly spreading awareness of Hodgkins Lymphoma and how vital it is to catch symptoms early. Leanne Pero and Charlotte Crowl, two other phenomenal woman within the cancer community run a podcast with two series within it, ‘Black Women Rising’ and ‘Black Men Rising’. I can’t recommend them enough for in depth, honest and a lot of the time really funny conversations.
Saima Thompson, who spoke with such wit and sharp clarity at the Trekstock event AND brought plates and plates of pakora for everyone at the event from Masala Wala, dies. The outpouring of love for her on social media is a testament to what an important and universally loved person she is. Everyone knew her in the cancer community, and she encouraged so many to live with honesty and hope. She did so much for people on both huge and far reaching levels, and on personal levels, taking time to chat and get to know each and every person she met.
‘I’m really sorry.’
‘Don’t be sorry, don’t be sorry. Oh god. I wish I could give you a hug – I’m sorry, I’m sorry for making you talk about it.’
‘It’s fine, it’s my fault, I shouldn’t have agreed to it, when I knew – ’ I shudder as I try to speak through another sob.
‘Just take a second and breathe Rosa.’ The woman from the cancer charity looks at me through my laptop screen with such genuine kindness that I feel a bit less embarrassed about breaking down in front of her.
‘I think – I knew I was having a bit of a shit one today. And this week. I’ve just been really struggling with cancer thoughts and I’ve found them a bit harder to control than usual but I really didn’t want to cancel again.’
‘You’re totally fine. This stuff is a lot. I speak to a lot of young people with cancer and, you know, this is hard stuff. It’s hard to rehash.’
I’ve been talking to this charity about making a short film with them for a while, and she’s finally got me on zoom to talk through my experience and what we could make the film about. Recently I’ve been finding it harder to keep up with this side of my life. I’ve been neglecting emails, forgetting meetings, and stepping back slightly from the cancer community in general. It’s happened slowly over lockdown. The thought of talking about it brings up fear and anxiety, that I never used to experience when working with charities or telling my story. If I could perform it to an audience for two months, why can I not explain to a person who wants to work with me over zoom what it was like in hospital?
‘Yeah. I think I probably do need a bit of help.’
I’m going to use this time to write, I think.
I’m going to write something, at some point, I tell myself.
I write a haiku about bats.
I redraft the haiku about bats.
I cry because the latest draft of Madame Ovary is actually, objectively, shit.
I talk about climate change with my friends. It feels really real, and we’re all really scared. Twelve years to make a difference, they’re saying.
‘It would be a bit shit to survive cancer and then just die early because of climate change, wouldn’t it?’ I say.
Rhianna and I go and see Lauryn Hill at the o2. We were meant to see Jhene Aiko together the weekend I was diagnosed and this feels like a long overdue celebration. We drink wine out of a can, sing our hearts out and go back to mine for a sleepover. We talk animatedly about the gig and whatever else, and fall asleep in my bed, spooning.
I’m on a train and I see a magpie and dread fills my entire body. The rule in my head goes: upon seeing one magpie (which means sorrow according to THE RULES) whatever you’re thinking about will turn out bad. Something bad will happen to you. If you’re thinking about the boy you like, if you’re thinking about the audition you’re on your way to. If you’re thinking about cancer (I’m so often thinking about cancer, I realise, even though I’ve finished Madame Ovary for now, and I’m well, and my last scan was clear). Once you see a singular magpie, that’s it, like a little cloaked figure of doom, it tells you you’re fucked. I look for another one, which according to THE RULES, mean all is fine and all will be well. Two magpies for joy. You’ll get the job, you’ll fall in love, you’ll be cancer free.
I shift slightly in my seat on the floor. I realise I’ve been thinking about something and instead of telling myself I’m shit at meditating and therefore shit at everything, I just tell myself I’ve been thinking about something. I focus on my out breath. I wait for the next out breath. And the next one. And then another one. Just as I’m about to get to the next out breath I realise I’ve not actually been thinking about anything, and I get really excited that I’ve stopped thinking and then realise I’m thinking about thinking. I breathe. I tell myself I’ve been thinking.
I watch other people’s shows after I finish Madame Ovary for the day. I sometimes go with friends, sometimes alone. I see a huge mixture of comedy, theatre, circus. I also see a number of other one person shows and am totally in awe. Tabby Lamb’s Since U Been Gone and Katie Arnstein’s Sticky Door, Mika Onyx Johnson’s Pink Lemonade and Katie Greenall’s Fatty Fat Fat, Izzy Kabban’s LOVE (watching madness) and Brynony Kimmings’ I’m A Phoenix Bitch and Travis Alabanza’s Burgerz. All of these artists teach me and make me laugh and make me cry about completely different things. It never ever feels like a comparison, it feels like a companionship, like inspiration. I suppose eight person shows never compare themselves to other eight person shows? Is that a shit observation? Whatever. I watch these artists up on stage, telling true stories about their lives, about the way they see the world and I feel so, so fucking lucky I’m alive to see this, and be a little part of it.
I’m on a walk voice noting Jen. It’s beautiful summer weather and I’m walking along the moors near to my parents’ house in Yorkshire.
‘Ah fuck I’ve just seen a magpie.’ I say, mid sentence.
She responds later because of the time difference between here and Australia. She was meant to return to the UK in March for her scan, a three monthly check up for any reoccurrence of her cancer, but all flights are cancelled and she’s enjoyed the extended time in her hometown with her parents and friends.
‘This magpie thing,’ she says. ‘I don’t know about that. Surely if you decide the magpie gives you sorrow, you’re just gonna spend your whole day looking for sorrow.’
‘So when you were ill, your brain and body were under threat, right? A constant state of threat. We use this term fight or flight,’
‘And it means your entire physiology changes. The blood supply for the problem solving part of your brain goes to your amygdala, which drives this fight or flight response. So when you’re faced with a life or death situation, your brain isn’t processing things normally. Which is why these memories are coming back to you now, later, and you’re feeling what you described as a constant sense of dread?’
My new psychologist looks at me through my phone screen.
‘And what we aim to do in therapy is make it so you don’t feel like you’re still in the heart of these memories, and process what you were unable to back then, so we can help them to become actual memories.’
‘That’d be great.’ I suck in some air. ‘I feel. Quite relieved. Actually. I was a bit worried that this anxiety, this way I was feeling was sort of my baseline level of stressed out. Like maybe I was overreacting. But I thought, God, if that’s my baseline level, and I feel this way every day. Then I don’t know. I was pretty scared. But if it’s something we can work on. That feels like a relief.’
‘It’s definitely something we can work on. It’s going to be hard, you know. I want you to know that. Just like this feeling of relief, is upsetting too.’ (I’m crying)
‘I’m really glad you got in touch with us and asked for help.’
‘I am too.’
A nurse holds my hand whilst I have a panic attack.
The surgeons implanting my PICC line joke around with me.
A doctor tells me it’s great to see me smile.
A nurse asks me about what plays she should see.
A social worker apologises for wearing PPE, and that I can’t see her face, but there’s flu in my ward and it’s a requirement.
My oncologist tells me the first chemo we’ve tried is already shrinking my tumour.
My nurse tells me I should email her if I ever need anything.
A porter taking me to get my drain fitted sings to me as we go.
The sister on duty tells me not to worry about visiting hours, if I want people with me right now that’s ok.
A crowd of nurses and healthcare assistants flock around me as I return to the ward with a shaved head, telling me how cool I look.
I stand up from meditating and stretch my arms. The sun has finally come out in Yorkshire after two weeks of rain. I look into the garden and see a magpie. I quickly scan my thoughts to figure out what it is that’s going to go horribly wrong. I realise I’m not really thinking about too much, just now. And even if I was, these magpies don’t even know what a huge impact they have on my brain, because they’re literally just birds minding their business. Maybe I should stop endowing them with the control over whether I feel sorrow or joy and take a little bit more responsibility.
I think about writing. I used to write to make myself feel some sort of control over how I was feeling about my situation. Then I stopped because I wasn’t sure what to write next. Did I have anything interesting to say? Did I want people to hear it? Did people want to hear it? I remember reading somewhere about writer’s block, and how as writers we put too much pressure on something being good, or great, or having a purpose or a meaning. I think about how much I’ve wanted to write something about it being my three year anniversary of being diagnosed with cancer, but I don’t know if I’ve got a point. Or a lesson. Or a discovery. I don’t feel like celebrating this three year mark when so many of my friends are undergoing cancer treatment during a pandemic, or are experiencing awful mental health, or unemployment, or losing loved ones to COVID. But I don’t want to let it pass me by. I want to remark on how proud I am of myself for coming so far, but I feel guilt within that because I’ve been struggling so much, and struggling to be honest about that. It hasn’t been linear. It’s not a satisfying date ordered thing I can map out. What do I want to say to a host of people I can only communicate with online? No parties to drunkenly shout ‘I love you, mate’ at each other. No plays to watch that make you think about someone else’s experience of the same Earth. No tube rides back from gigs, or nights out where you debrief or chat shit. I can’t go and see my cancer friends for a big dinner where we talk about the weird experience we all share, and leave feeling like we all get it. I can’t take my friends who work for the NHS out for a pint. I can’t go for a dance to feel my body come back to itself after a day of worrying. No way to grab the hand, or face, or shoulders of the people that I love, or have inspired me and tell them ‘you are actually fucking smashing it you know.’
I decide to just write down some things that happened over the last three years. Maybe it could be a blog post, just like when I started out.