Loss

Some names have been changed.

I meet Rai the day I decide to shave my head. Upon arrival at the hospital my hair is falling out onto my jumper and more is being pulled away every time I take my scarf off. Every time I pull a brush through it, the loose hair tangles into the rest of it, and there’s a constant matted clump at my neck. As I sit waiting for the doctor, I am surrounded by the threads of my illness. I wrap one around my forefinger and watch the tip of it turn red. I feel my pulse strain against the strand of hair. My nails are also red, because apparently painting them will stop them weakening and breaking during treatment.

There is a girl sat up in the bed opposite, on top of the covers like me, and I smile at her over my strangled finger. She smiles back. The man she is with is on his phone, his thumb in his mouth and his foot in his boot, tapping right to left. She is wearing the standard hospital admittance outfit – black tracksuit bottoms, a loose grey t-shirt under a big hooded jumper and battered trainers. Something usually pulled on in the middle of the night when the pain gets too much, that you can wear comfortably as you sit in A&E for five hours, that will be pulled up, down and around easily for scans and blood tests. She’s done this before.

Someone who is not my usual doctor arrives and pulls the lavender curtains around my bed.

‘They were blue last time I was here,’ I tell her.

The doctor smiles and licks a finger, and uses it to flick through my notes. I glance at the hand sanitiser at the end of my bed.

‘So before we start your chemo, we need to send you for a lung function test downstairs. And then a hearing test at a sister hospital down the road. We’ll organise some transport for that, if you don’t mind waiting.’

I decide not to do the ‘pretend I can’t hear her’ joke.

A porter is sent to my bedside and I am wheeled down to the outpatients section of the hospital, where I spend a bit of time blowing into various tubes and trying not to make eye contact with the technician as I do it. This is to test how my lungs have been coping after my first round of chemo last month. Cisplatin, one of the chemicals that make up my chemo can cause long term effects on many parts of my body whilst it kills my cancer cells. You win some, you lose some (vital organs). I can’t find the porter when I leave, so I get the lift back up to the 14th floor. The bed opposite me has it’s purple curtains pulled across, and I can hear doctors talking behind them as I sit back down on mine. As much as you don’t want to eavesdrop, polyester doesn’t do much for privacy.

‘We need to send you down for an MRI and then we’ll start chemo anyway, most likely tonight.’

‘Okay,’ I hear the girl say.

‘I’ll talk you through the side effects and then we’ll call a porter to take you to X-ray.’

I sit back on my bed, trying to look for something to do. I sit up again and leave another clump of hair on the pillow.

‘So one of the side effects will be hair loss, Rai,’ the girl’s doctor says.

‘I think that’s the least of my worries right now to be honest,’ she replies. I pick up my latest lost clump between my red fingernails and put it in the black bin bag hung on the end of my bed. She’s right.

I catch a nurse walking past and ask about my hearing test. It’s getting late and I’m worried they’re not going to start my chemo in time. When she returns she smiles at me apologetically.

‘Sorry Rosa, there’s no transport available to take you down the road,’ she says. ‘And we can’t start your chemo until we do this test. It’s only a fifteen minute walk away,’

I agree to go. I figure I’m going to be sitting on my arse for the next five days, and then confined to my bed for the three weeks after that due to fatigue, so a fifteen minute walk isn’t going to kill me. Also, I’ve had an idea.

I put my coat on and pull a beanie covered in red hair over my thinning scalp. I head to leave at the same time as the curtains opposite reopen and the doctors leave. I see the girl sat on her bed, smiling up at the man who is with her and leaning down to kiss her. I look away before he does.

***

‘Hi,’ I say breathlessly, partly from anxiety and partly from not walking any distance at all for a month. ‘I’ve got a bit of a weird request.’

The man is bald. He leans forward inquisitively. ‘Yes?’

‘I’m, uh, well, I’m having chemotherapy at the moment and it makes your hair just fall out loads and I just think I should, um. I want to shave it all.’

I take my beanie off and show him the collection of human hair gathered in the bottom. ‘It’s just annoying me. I just want it off.’

The hairdresser takes a second. Then he smiles, shows me to a chair and he puts a gown on me. I’ve been in a hairdresser’s chair and gown hundreds of times, grinning at them in the mirror and telling them to add a bit, take a bit, cut a fringe, put some blonde in, dye it black, help me forget my ex, make me feel sexy, make me feel new. This time, I look at the electric razor and wait for the hairdresser to plug it in.

‘Sorry, my hair’s really disgusting at the moment, it’s sort of gone all matted at the back – ’

‘Don’t worry at all,’ he says. ‘Shall I shave a bit off so we can decide how short you want to go?’

‘Yes please.’

We decide on a 2. Not too short, but not so long that I’m going to be bothered by the tiny strands of hair. First go my sides. Then the big matted clump on the back of my head. Then the top. The hair on the floor is not beautiful. There is nothing worth salvaging. It is dead. The hair that remains is almost blonde. I look at myself. I thought I’d cry, or laugh. I don’t feel anything.

A woman walks past us, I assume she is the manager. She does a double take. ‘That’s a big change, sweetheart!’

I think of what the girl opposite me said. I smile. ‘I’ve had bigger.’

The hairdresser takes me to the sinks and carefully washes and conditions my new fuzz. He gives me advice on how to keep my ears warm in the winter, and how often to wash it.

‘I have lots of experience,’ he says as he towels my head dry. We laugh.

As I get myself together to leave, he is talking to the manager. As I approach the desk to pay they both turn to me.

‘It’s free for you today,’ he says. The manager nods enthusiastically.

‘It’s always free for you. Whenever you want. Haircuts are always free for you.’

***

I get back to my bed in the hospital and am greeted by a team of nurses.

‘You look amazing!’

‘It suits you so much!’

‘How do you feel?’

It hasn’t really hit me yet, but I can’t stop running my hand across my head. I definitely look the part. I thought I’d be a lot more upset. I thought this would be the hardest bit.

Chemo is delayed until tomorrow because everything has taken so long. I read a bit of my book and text my family and friends pictures of my new fuzz. The curtains opposite open and the girl’s boyfriend comes out. I smile. He smiles back. He turns around and opens the curtains a bit. I hear him whisper ‘talk to her, she seems nice!’ He winks at me, and leaves.

She comes out a few minutes later. She walks slowly, and puts her hand out to guide herself as she crosses to my bed.

‘Hi,’ she says.

‘Hi,’ I say.

‘Do you mind if I come speak to you a bit? It’s actually kind of refreshing to see someone here my age.’

‘Not at all, come sit down,’ I pat the bed.

‘That sounded bad,’ she says as she lowers herself onto the end of my bed. ‘I don’t mean it’s refreshing to see someone else my age with cancer – ’

‘No, no, I know what you meant,’

We smile at each other.

‘I’m Rosa,’ I say.

‘I’m Rai. Do you mind if I ask what cancer you have?’

‘Ovarian. Stage 3.’

‘When were you diagnosed?’

I think. ‘About a month ago today actually. What about you? What do you have?’

‘Well, I’ve been in hospital since – ’ Rai pauses. ‘Sorry if I’m not looking at you properly by the way. I kind of have double vision at the moment.’ She squints at me and continues. ‘I first went into hospital in like early February. Then I went home, came back, went home. I got moved here two days ago. They don’t really know what I have but they think it’s something called a sarcoma.’

I know about sarcoma. A friend’s boyfriend had it. I nearly tell her that. But I don’t.

We sit on my bed and discuss our symptoms – how we both thought it was something arbitrary and carried on with our lives. Rai had been complaining of shoulder pain for two months, but was working at a restaurant and thought it was from carrying heavy stuff.

‘I went to physio, it just made it worse.’

She tells me about her boyfriend. ‘We met at the restaurant,’ she says, a smile creeping into her eyes. ‘I was waitressing and he was a chef and I thought he was so cute. He had no clue though, I was like making eyes at him all the time and he was like thinking I was all weird,’ she cackles. ‘Then one day at a work night out I said to another waitress, oh I have a crush on Gio. She told him and the next day he asked me on a date.’

They’ve been together nearly two years.

‘You know what’s annoying though,’ she says, pulling her hoodie around her. ‘He told me a few days ago that he was about to buy a ring.’

‘Don’t worry. He can still buy a ring! You’ve just got to get these scans done, you know? My first couple of weeks in hospital were hell and then it calmed down a bit.’

We talk about biopsies, and scans and the different hospitals we’ve been to. My friend Claire arrives to visit me and the three of us sit and chat. Like some weird sleepover. I suddenly feel incredibly understood and validated. Our experiences are similar, she’s only a year older than me and we both like to write. I like her.

My chemo starts early the next day. I’m on a new formula. This one will be less severe than the first, and the long term side effects are less aggressive. Both my lung and hearing function tests have come back clear and positive, along with some kidney tests I did the week previous. I’m plugged into chemo through my PICC line and waiting for my dad to arrive when Manju bounces in. Manju is one of my favourite people at this hospital. She works for young people with cancer, and I first met her last month just after my blood transfusions. Her job is to make you feel as normal as possible despite having cancer. The first time we met she brought me a TV, a stack of DVDs and pigs-in-blanket flavoured crisps. She also introduced me to other young people with cancer. This time, she gives me a hug, runs her hand across my skinhead and tells me how much I’m working it, and sits down and asks me how I’m doing. I’m on the haematology and gynae ward, and the rest of the young patients are mainly a floor down. She invites me down that evening, because she’s ordering everyone Dominoes and she thinks it’ll be nice for me to get out of the ward for a bit. I agree.

‘I’m just gonna grab Katie and say hi to Rai quickly,’ Manju tells me. Katie is the lead nurse for young adults with cancer. She brought me heart shaped balloons when I was in hospital on Valentine’s Day and her and Manju work closely together looking after patients.

They step into Rai’s cubicle together and I hear them introducing themselves to her and Gio.

‘Jesus,’ Rai says. ‘You two are like peanut butter and jelly aren’t you?’

I go down to the pizza gathering later on. Truthfully, I kind of don’t like pizza. But I do like people, and meeting Rai has made me realise how therapeutic it is to chat to others going through a similar thing. Manju introduces me to Zoe, a leukaemia patient who has just gone into remission and is leaving on Friday. Her spirit is amazing, and she tells me about her family and close friends who saw her through everything. Rai and Gio come down and a few of us sit round in this poky entertainment room off the main corridor swapping stories and hairloss chat. Rai says she’s always wanted to be blonde so will get a blonde wig. Gio tells us more about how they met.

‘Honestly, the first date I just talked and talked the whole time, I was so nervous,’ he says.

‘Yeah. I learnt so much about you. You didn’t learn fuck all about me,’ Rai says, and pokes him in the ribs.

‘And at the end of the date, I was just like, yes, I know this girl is it. She is the one, I’m not going to play games, I want to ask her to be my girlfriend.’

The two of them, dressed in black, don’t leave a gap between them as they sit next to each other. ‘Him and my brothers.’ Rai says. ‘They’re all I’ve got.’ She says it proudly.

The next four days are spent being plugged into intravenous fluids and waiting for the chemo side effects to begin. My friends and family visit throughout the day and bring me books and food. Occasionally on my way to the toilet I’ll glance at Rai’s bed. She keeps the curtains shut all the time, and always has Gio or one of her brothers’ by her side. She gets wheeled off to scans a lot. One morning when I wake up, someone else is in her bed. I don’t feel like I know her well enough to demand one of the nurses to tell me where she is. However I hear during handover that she’s been moved to a private room. Good, I think. The last thing you want when you’re newly diagnosed is to feel like you have no space, no privacy.

I go back for my third round of chemo a month later, and they manage to get me a bed on the young adult ward. It’s Easter, and Manju comes in and brings me about nine easter eggs and a colouring book. She says she’ll let me know if we do pizza again. I enquire about Zoe, who is apparently doing really well.

‘How’s Rai?’ I ask.

‘Rai… Rai is really poorly, yeah. She’s here, she’s in her own room next door. But Gio and her brothers are here every day and she’s sitting up making bracelets. She always gets up and walks about a bit.’

It is sarcoma that she has, I find out. I don’t ask anything else. It feels nosey, and I don’t want to put Manju in that position.

My hair still falls out, despite it being shaved. By the time I have my operation at the end of May to remove my ovary, I’ve stopped caring about my baldness. Just before I go to get my operation results, I drop in to see Manju and Katie. I need some forms signing for various benefits and proof of illness and I sit in their office and have a catch up. I tell them about the operation and how hopeful I am that the results will come back saying I’m all clear. They also have printed out some pictures of me that they’re going to stick in this scrapbook that one of the patients created. The idea is for all of us to have a page telling our story and passing on advice. Manju glues my photos in, and I ask if I can flick through and look at the others.

‘There’s Ryan, who created the book,’ she says. She turns over. ‘This girl’s been in remission for six months now.’ She flicks to the next page. ‘There’s Rai.’ She quickly moves on to the next page. We look through everyone’s photos and words of encouragement and she places the book back on her desk.

‘I was going to ask, actually. How is Rai doing?’

Something tiny but noticeable ripples through Katie and Manju.

‘I wasn’t – sure if you knew or not,’ Manju says. ‘Rai died.’

‘Okay,’ I say. It feels like embarrassment but I don’t think it can be. My cheeks are being pin pricked. There is a tunnel in front of my face. ‘Okay.’

‘Are you alright? Come here.’ Manju gives me a hug.

‘No, no, I am, sorry. I just – it’s just a shock. It’s just quick.’

‘I know. I know. It’s horrible. But she was so loved, Rosa, and she passed away with so much love surrounding her. She had everyone she wanted by her side.’

I sit back in my chair.

I’ve met her once, I know. I can hardly say I am her friend. There’s something wrong about claiming that. But I’m having some sort of emotional response to it as Manju tells me that just before she passed away she got to go outside and say goodbye to London.

She was only twenty four. She was only diagnosed a couple of weeks before me. I want to be as careful as possible when comparing our situations, because it’s not helpful to think about how they ultimately were different. But she made such an impression on me. Anyone could see how much light she carried. She was so funny, so sarcastic, so interesting. She had so much love flowing into and out of her. I wanted to write about my experience of her because I consider it such a big part of my experience with cancer. The people you meet don’t realise how much they touch you and influence you. From the moment she unwittingly told me there are bigger things to worry about than losing your hair, Rai taught me about myself. I know I wasn’t the only one she will have affected in such a way.

Rai’s sarcoma was found at stage 4. She spent months blaming it on shoulder pain and was sent to physio and masseuses. I had heard about sarcoma before because of my amazing friend Jo, whose partner Ryan was diagnosed and passed away at the age of 27. Sarcoma is yet another aggressive cancer that is not easily identifiable. If it wasn’t for Jo spreading awareness about the disease, I would never have heard of it. Jo is running the Great North Run for Sarcoma UK, in honour of Ryan and others who have the disease. The first step to curing and catching cancers at an early stage is knowing that they exist, and what to look out for. The link to her JustGiving page is here. Please donate if you can, or share this blog post for Rai and Ryan.

https://www.justgiving.com/fundraising/joanne-mcguinnessruns

6 thoughts on “Loss

  1. Diana Scrivener Blair says:

    Another brilliant and very touching episode in your blog, Rosa. Sad and heart-wrenching to read about Rai. But lovely that you commit her story to your pages so she is shared with your friends…..

    Huge love to you…..

    Diana xx

    Like

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