terminal cancer

Stop Glamourising Cancer

~ Naomi ~ Leave a comment

This week marks three years since cancer entered our lives. Mum was diagnosed with breast cancer at the end of August 2012, before getting the all clear in Easter 2013 and being declared terminal in February 2014.

This time in 2012, I was embarking on a gap year, one brother was about to start his A-Levels and the other was starting year eight. In 2013, we were on a family holiday in France, walking up lots of mountains, attempting to mountain bike down some others, and eating far too many baguettes afterwards. 2014 came, and Mum’s condition went up and down a bit, but we still managed to get away for a few days and head to the Dales for some beautiful walks.

This weekend, we were going to spend the day as a family, on the coast or at the Yorkshire Sculpture Park, but it ended up not being possible. Mum takes a while to wake up in the morning, so we wouldn’t have been able to leave until 2/3pm. Then it turned out to be super windy, and Mum wasn’t feeling the best she’d ever felt, and we couldn’t think of anywhere accessible to go that wouldn’t have a small hurricane nearby, so we ended up just staying in. We had a pleasant enough day (I baked enough to sink a small ship!), but it doesn’t hide how dramatically different our lives are now compared to how they used to be.

I was feeling pretty rubbish on Sunday night – overtired, and becoming increasingly angry at the whole existence of cancer, so I figured I needed to try to make my frustration productive in some way. I typed ‘terminal cancer’ into a site a lot of young people use to rant, get inspiration, and generally support each other through anything and everything going on in life.

Up came pages and pages of GIFs, screenshots and quotes from The Fault in Our Stars, broken up with the occasional bit from My Sister’s Keeper and Before I Die. Scattered amongst these snippets of carefully constructed Hollywood drama were the writings and cries for help from other young people who are attempting to come to terms with losing a loved one to this horrible, horrible disease, in real life.

It was then that something I’ve always thought on some level really hit me. I am absolutely sick of the glamourisation of cancer. The ‘Hollywoodification’ of terminal illness. The warm filter put on dying.

When people are trying to reach out for help, and the only experience their friends have of cancer is a watery-eyed, highly made-up Hazel-Grace (without any jaundice, oedema, peripheral neuropathy, bags under her eyes, weightloss, or anything else that might come with cancer – if it weren’t for her oxygen tank, she’d look completely healthy), staring into the beautiful eyes of the ‘it’s a metaphor’ Augustus Waters (who by the way, also has none of those symptoms) it’s not helpful. How is anyone supposed to come to terms with what they’re going through when this is the picture of cancer put before them?

I picked TFIOS out because it’s pretty prominent at the moment, but there are hundreds of cancer stories out there. Cancer is an easy illness to work with when scriptwriting; most people have heard of it, giving people a bald head can easily symbolise it, and the stages of cancer can easily be made to mimic the traditional three act structure of Western storytelling.

I have nothing against John Green or any other writer who writes about cancer, either in books, in films, or via some other medium; I would just prefer it if people didn’t treat the characters in these stories as if they were real people. I’d love it if people who wanted to know the realities of cancer read real accounts of living with cancer, either written by sufferers or those close to them, and if we could dispel these ideas that cancer is all bald heads, cake, trips abroad, and profound moments.

Ideally, cancer would disappear from all our lives forever, but sadly we don’t live in an ideal world. I hope that by writing about our experience of cancer, I can help people to gain a better understanding of terminal illness, and how it affects those involved, without resorting to Hollywood’s cotton-candy version of dying.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/stop-glamourising-cancer_b_8047444.html?utm_hp_ref=uk

Social Media is a Carefully Constructed Facade

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Yesterday, I met up with a friend. After a couple of hours of window shopping (and a little too much actual shopping – sorry bank balance!), we sat down for a drink and the kind of chat I wish were more common: a proper conversation. None of this ‘how are you, I’m fine thanks, how are you’ crap which most of us seem to spend the majority of our time reeling off because that’s what we’re expected to do.

We spoke a lot about all that’s going on in our lives. Both of us have great stuff going on at the moment, but naturally we’re also both dealing with things which aren’t exactly ideal, and we’re managing them alongside jobs, university, and some sort of vague attempt at a social life.

I spoke a lot about Mum; how she is, how the rest of my family are, how our house is, basically lots of cancer related stuff. My friend responded with words I’ve heard so many times in recent weeks: ‘I’d never have known’.

From so many people, for so many reasons, I seem to be hearing this a lot more than normal lately. ‘I’d never have known your mum dying affects how well you’re sleeping’. ‘I’d never have known it affects your studies’. ‘I’d never have guessed that ‘x’ was going on’. Usually accompanied with ‘you’re coping so well with this, I don’t know how you do it’.

If you look at my Twitter and Facebook, they paint a fantastic picture. I look after two lovely boys for four days each week, and you’ll see pictures of their various baking endeavours, their glittery creations and their muddy wellies, usually accompanied with something amusing that one of them came out with. You’ll see photos of volunteering things I’m doing: whether it be a selfie on a train to London, a photo of somewhere pretty I’m sitting, or something else, you can be sure it’ll be as photogenic as I could make it in the moment. And that’s before we get to the various updates about the revision I’ve been tackling, culminating with a photo of all my notes last week before my exam. There will be some jokes on my immediate family’s Facebook walls, conversations with other family on Twitter and every now and then a link to a news article I found thought-provoking.

But the stuff I don’t post on social media are the things that keep me up at night. The discussions I’ve had with Dad about Mum’s health. Worries about whether Mum will make it up the stairs tonight. How exasperated I feel that my family seem to have stopped leaving the house. The crying that comes when it hits me that Mum really is dying. The questions I mull over each day: ‘what will it be like when…’, ‘what about if…’, ‘how do I cope with…’. I certainly never post my fears about whether I’m coping well, if I’m making the right decisions, and what’s going to happen in the future.

The thing is, I’m not the only one. If I did start posting all of that stuff, kinder people would think it was quite odd, and less kind people would probably react with hostility – how would you react if this popped up on your feed: “crying because I just walked past people graduating and Mum probably won’t be around when/if I graduate”?

I have a number of friends going through a lot of tough situations at the moment. Physical health problems, mental health problems, family issues, you name it. I have friends in hospital, friends who’ve recently received difficult test results from their GP, and friends going through family break ups. If you looked at these people’s social media profiles and then they told you about these issues, you’d probably say ‘I’d never have guessed’.

More than any other area of our lives, social media lets us choose exactly how much or how little we say to the wider world about our lives. No-ones social media profile can fully represent that person – after all, how do you capture a human personality in 140 characters, or a well-filtered selfie? And that’s before you get to the unwritten social rules on what you can and can’t post – don’t cry for attention, don’t post anything that could upset or offend anyone, do your best to be funny – that actually restrict the freedoms we’d so dearly to love to have, and make the whole social media thing so much more difficult.

Assuming a friend is fine because they posted a happy Facebook status is like seeing someone wearing makeup and assuming they look the same without it. Facebook and Twitter and Instagram can so easily turn into makeup for your whole life: social mascara, if you like, personal concealer, maybe societal hair straightening. Please don’t ignore hints that they might not be so okay right now, if there are any. Reach out to your friends, drop them the occasional text, start some real conversations. Summer can be an incredibly lonely time, seeming to stretch on forever if things are difficult. Take out your makeup wipes, and find out if your friends really are as ‘okay’ as their internet presence suggests.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/social-media-is-a-carefully-constructed-facade_b_8000484.html

Saturday Afternoon

~ Naomi ~ Leave a comment

It’s Saturday afternoon and my Mum, Dad and brother are sat downstairs watching TV. After a few days of rain and a lot of days of grey, summer seems to have returned. The sun is shining, the birds are singing, it’s hot, there’s a nice breeze flowing through and a hum of lawnmowers in the air.

A year ago Mum would have been out in the garden tending to the vegetable patch. If she wasn’t there, she’d have been at her friend’s, playing their saxophones, baking something in our kitchen, or sitting outside with a book and a cold drink. She might have been doing the weekly shop, changing all the sheets or de-cluttering the kitchen. Whatever it was, it would have involved being on her feet, being busy, and not stopping until this evening. We probably wouldn’t have been allowed to be sat down either.

In fact on a day like today, around this time, my Mum would probably have come in from the garden, wiped her muddy hands on her gardening trousers, told my brother it was a beautiful day outside and he should get off the computer and join her out there, and gone to get a drink before heading out again (most likely dragging my brother with her). The door to the garden would remain open all day and the house would feel light and airy.

Today, the door to the garden is firmly shut and three faces stare at the TV screen. The sound of dramatic music can be heard throughout the house. None of us have ventured anywhere near the vegetable patch, we haven’t heard the saxophone in months, Dad has done the weekly shop so there are different foods in the fridge from what we were used to, and the kitchen remains somewhat cluttered.

This frustrates me. I want to walk into the lounge and shake everybody and tell them to get up and get outside and shout about what a beautiful day it is. I want to kick-start our family into moving again. Into having lunch before 2pm and getting up before lunchtime. This is not who we are and it is not what we do; we are active and engaged and busy all of the time.

Mum might not be able to do much but surely she can at least take her book outside?! (I asked Dad about this and it would involve taking her chair outside and be as much effort for Mum as walking half a street and she can only probably walk one street so realistically this isn’t so possible). Dad isn’t cancer-ridden, so surely he can do stuff? But he wants to spend Mum’s waking hours with Mum, which I guess makes perfect sense.

As for my brother, he’s young, fit and healthy, he should be doing stuff with his summer. Starting projects he’ll never finish, visiting friends, pretending to do his summer homework. I’ve thought about it though, and in a year’s time, he probably won’t be able to sit and watch TV with Mum. In fact, he probably won’t be able to in a few months/weeks. So maybe it’s okay for him to sit there with her, and maybe it’s what he needs.

And me? I’m desperately resisting this way of life, terrified that once I fall in I’ll never get out. I’m spending my summer working, revising and project-ing. I’m running every morning to get me out of the house and just keep my body moving. I’m cleaning every surface I can see (or as my Dad calls it, ‘drinking bleach’) and throwing away anything ‘unnecessary’ in my life. I bake and bake and bake and then drag my poor brother into the kitchen to do some more baking. I’m going into overdrive; a whirlwind of uni work, housework and paid work, before crashing into bed each night, absolutely exhausted.

None of us know what we’re doing. We’re all swimming in a cancer-ridden life, hoping that we won’t regret each decision we make. We are all trying to cobble together lives of ‘spending time with Mum’ and ‘carrying on as normal’, but often it’s like trying to join two pieces together from two different jigsaws. Thinking about all of this leaves me feeling frustrated, angry and upset. So I’m going to go and put that energy into making my bathroom as clean as it’s ever been. I hope you all have lovely Saturdays wherever you are, and if you’re able to, please make sure you get outside and enjoy the sunshine, even if it’s just for five minutes.

 

Difficult Days

~ Naomi ~ 3 Comments

I have a number of texts on my phone waiting for a response. Even more emails in my ‘flagged’ compartment waiting to be read/responded to. A few messages on, or in relation to, my blogs which I want or need to reply to. Some Facebook messages which have gone unanswered and fallen off the radar, and a few other messages on my phone or laptop which are floating in the back of my mind and I know need a response.

On top of that, I have a mental list of emails which need sending, meetings which need organising, people who I need to speak to, and forms I need to fill in. I have events to plan, my diary to attend to, the bathroom to clean, and boxes of uni stuff to sort. I am on top of my washing, which is a first.

There have been a number of difficult days recently, and I’m struggling to pull my thoughts together well enough to respond to things properly, so they get left. The lethal combination of Mum’s illness, a looming exam, and the change of living at home compared to living at uni, has lead to a few too many sleepless nights and anxious moments – I’m exhausted.

I feel like I’ve been buried in a hole, and every time I try to catch up, life moves on. Life is moving too fast for me and I can’t keep up the pace. As the days have gone on, more things have slipped: an email response here, a text there, a phone call that I really should have returned last week. Time in our house feels slow compared to the outside world and that only serves to slow me down further.

I will catch up, but it’s going to take time. My exam is tomorrow, so at least after that some revision time can be spent doing admin-y stuff, though I still have a dissertation to start, friends to see, and fresh air to breathe.

So this is a post to apologise to all those people who are missing a reply. I’m not ignoring you and it’s not personal, it’s just that some days all I manage to fit in is work, revision, and sleep. It’s also a post to let my regular followers know that there won’t be a HuffPo blog this week, because I just don’t have the time or the brain space (my brain is largely filled with the statistics exam content at the moment). Most of all, it’s a post to be honest, because I know that my social media presence is largely full of my happy, busy, life (which is my life most of the time!), but I also have difficult days and I feel they need to be included to. I’ve had a couple of messages asking for advice lately (and I will always prioritise these – so don’t be put off sending one if you feel the need to), which suggests that there are some people following me who are in a similar situation, and the last thing I want to do is paint a false picture of what living next to this crappy disease is really like.

I Miss Our House Being Noisy

~ Naomi ~ 1 Comment

I’m privileged enough to have had a wonderfully happy house throughout my childhood and upbringing. It’s almost always been filled with activity, music, laughter and conversation. Barely a weekend would go by when we didn’t either have someone over, or visit someone’s house, and seeing friends of my brothers or parents who I didn’t know, sat in our kitchen or lounge, was an everyday occurrence. Mum played her saxophone (or foghorn, depending who you asked), Dad would play the piano, as would my brother, my other brother, my Mum and I would dance around the kitchen to Caro Emerald whilst baking and cooking. It was certainly never quiet.

Even a year ago, you’d never have known that Mum had terminal cancer. As a palliative medicine consultant, she was working pretty much full time with people who were at the end of their lives. She didn’t look like a cancer patient. She was on hormone treatment at the time, and her hair had grown back from the chemo she’d had during her first bout of cancer just 18 months before. We’d both get up on a morning while the male members of our family were still asleep, have breakfast, chat, and head our separate ways to work. On evenings we’d both return; tired but still keeping up with any household chores that hadn’t been attended to during the day (or asking other members of our family to do them). At weekends, we’d visit people or have people over. The house would be filled with laughter and chatter.

Not anymore. When I get up on a morning now, everyone is still asleep. I get up in silence, creep around the house getting ready for my run before returning, showering, and getting ready for work as quietly as possible. I walk through the door on an evening now and I see and hear nobody. It’s silent. Sometimes I’ll get a “hello” from my brother who’s revising in the office, welcoming me home, but that’s about it. I’ll walk through the house towards the bottom of the stairs and there’s no music coming from the lounge (which is now my parent’s second bedroom, from when Mum couldn’t get upstairs). I normally pop my head into the living room to greet Mum who will be sat in her chair watching TV; she doesn’t always hear me come in. Dad’s often sat in there, too. Upstairs will be my other brother, headphones on, watching something or listening to music. He used to spend his evenings on the computer in the living room, talking to us all, and I’m not sure when that changed – though I think that’s probably a teenager thing and may well be the most normal thing around here at the moment.

It feels like Mum is fading into her chair. I know that the whole dying-and-coming-back-to-life thing was clearly going to affect her, and you’re never quite sure how that will translate. But Mum’s always been so active and so sociable. People do come round to see her, but my brother and I can’t remember the last time she left our house/garden. Also, for someone who’s always been early to bed, early to rise (and told us off if we’ve been to bed late and got up late!), she now sleeps for around 15 hours a day; going to bed really late and getting up around midday most days.

I suppose change isn’t uncommon for someone with a terminal disease, but I underestimated the extent to which it would affect our family and our house. Mum getting up late means everyone else gets up late. The lack of Mum tidying up means nobody really tidies up. Her being less active means we’re all less active. Being at home feels like wading through treacle, everything just slows down. It feels harder to revise, harder to get up on a morning, harder to get dressed. Everything feels slow and drawn out.

Even though I’m not a superfan of Harry Potter, the best way I can think to describe it is like there’s a ‘Dementor’ living with us. Entering the house, I feel smothered and devoid of energy; filled with an overwhelming sense that something is wrong. I feel uneasy, unsure, anxious and depressed. The last couple of days, all I’ve felt like doing is crying.

I don’t feel able to write a positive post this week. I feel quite low – it’s tiring trying to stay on top of everything, and some mornings I just do not want to get out of bed. When I’m at home, I do my best to stay busy, to clean, tidy and bake when I’m not revising, and to spend time with my family as much as I can. At work I throw all the energy and love I have at the kids I look after. I’m incredibly lucky to have friends who are organising things with me so I have stuff to look forward to, because that’s something I sorely need right now. I’m thankful for all those people who are looking out for me, and recognise more than ever how precious and comforting small and normal things, from my brothers making fun of me to the constant struggle to locate the garage key, can be in the midst of all of this.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/i-miss-our-house-being-noisy_b_7935278.html

Podcast

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I recorded a podcast a few weeks ago with podium.me who work hard to share the voices of those under 25.

It’s now been published and you can find it here.

It’s basically just me having a chat with Beth, one of their journalists, about having a parent with terminal cancer.

Terminal Cancer Might Be Taking My Mum’s Body, But It Will Never Take My Mum

~ Naomi ~ 1 Comment

A few weeks ago, I was pottering around York, as I often do. I went into a gift-type shop (there are loads of them in York – you know the type I mean). I was looking for something specific , so was taking my time looking at each display when I saw a sign which read ‘the best Mums make the best Grandmas’.

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It hit me like a punch to the stomach and I had to leave the shop before I melted into a puddle of tears on the floor. As I paced around town, attempting not to cry, I couldn’t help feeling angry at the injustice of cancer in general, and Mum’s in particular. My Mum is awesome and would make an incredible Grandma. She’d love it, too. In the past few weeks she’s knitted three baby cardigans so that if/when my brothers and I have children, we would each have something for them ‘from Grandma’.

Almost every day at the moment, I see something that Mum’s not going to have, or be able to do, and it makes me want to cry. It could be going on a trip to Tesco and realising she probably won’t do that with us again, seeing graduation photos on Facebook with a parent proudly standing either side of their offspring, or coming out of my driving theory test and thinking about what we’d be doing if Mum was well (going to Starbucks for a Frappuccino and people-watching before heading to Primark for a bit of a splurdge.

People often say that ‘they can’t believe how well you’re handling this’, ‘you’re all doing so well’ or ‘I’d never know from your Facebook posts what’s really going on’. I don’t mind this because on the whole; we are managing well, and my Facebook is not a shrine to my Mum’s illness because I’m still living my life. But it doesn’t mean that I never feel angry at the injustice of it all and just want to punch a wall.

Over summer, I am a nanny to two wonderful boys. They’re seven and five and I’ve looked after them every school holiday for two years – it’s the best job I can imagine having at this stage in my life and is both fun and rewarding in equal measures. We baked a lemon cake yesterday (at their request!), and then today, we cycled to the park, pushed a big swing pretended we were in James’ Bond whilst spinning on a spinny thing, and fell about on the grass. I started thinking about all of this kind of stuff again.

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Knowing the boys as long as I have, and spending so much time with them every school holiday, means that we have a fairly solid relationship. I hug them, they hug me, we play fight, laugh, joke, and enjoy each other’s company. They’re not my children (despite many museum workers calling me ‘Mum’ in the past), but they’re good practice for if I ever have my own.

Baking is something my Mum taught me as a child. She spent hours teaching me how to use a mixer, how to break eggs, and how to remember various recipes. Teaching the boys how to bake is a joy, and they get better each time we do it – they’re pretty good at it now, and love it just as much as I did at their age. Going to the park is something my parents and I did a lot as when I was a child. They must have spent hours pushing me on swings and helping me conquer climbing frames.

My entire attitude towards children and the skills that I pass onto them come from my experiences and upbringing, and especially from my parents. My Mum probably won’t be there in person if I ever have kids – I probably won’t be able to beg her for some childcare favours when I need some sleep. But so much of my Mum is in me, and has shaped who I am, that in some small way she will be there – and that’s something that cancer can never take away.

Each time I let one of the children lick out the mixing bowl, they receive some of my Mum’s baking passion. Whenever they fly high on a swing, they’re experiencing some of Mum’s joy through my own love of parks. Whenever they’re making stuff, I hope they’ll experience some of Mum’s patience for my various crafting endeavours, something I do my best to remember when I have to iron countless Hama bead creations, or make multiple loom band animals.

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Cancer might be taking my Mum’s body, but it will never take my Mum. It will never take all the things she taught me (not to mention other people), the impact she’s leaving in the medical world, or the impression she’s made on everyone she’s ever met. Cancer can’t take her love for me and my brothers, her pride in what we achieve, or her hopes and dreams for our futures. Cancer can’t destroy the memories I have of her and our family, of holidays, hill climbing and funny voices when we read bedtime stories as kids.

Cancer makes no sense on an emotional level, and I don’t think it’s something I will ever truly understand. But, when I find myself on my bum in the middle of a park having lost a play fight with two adorable boys – I know that my Mum, her attitude of always getting ‘stuck in’ and her willingness to do anything with the three of us, however silly it might make her look, will always be with me.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/terminal-cancer_b_7899680.html

Packing Up My University Year

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On Sunday, I moved out of the flat I’ve called home for the last ten months to the house I grew up in but no longer call home. A year ago, I would never have imagined I’d feel so at home in York, or so out of place in the village where I’ve spent most of my life so far.

As I was packing up my life, I noticed a few things – like all of the cards from my 21st birthday. Each card represents a person who loves me and cares about me, someone who knows that I have good times and crappy times, and who stands by me through all of it.

I took down all the letters I had stuck on my wall. I write to a few of my friends and they write to me. We support each other through the ups and downs of life, share quotes and ideas, teach each other skills and coping strategies we’ve learned. We sometimes send pictures or little items to help and guide each other through each day. These people have taken the time to sit down and pen me a letter, and those letters have been on my wall all year.

The four walls of that flat have seen so much over the last 10 months. Back in September, they saw me rush off before the first week of uni as Mum entered hospital again. They will have seen me crying late at night as I wondered if she was okay. They will have seen a repeat of that in November.

December, and they saw me getting excited for Winter Ball, trying on a new dress, learning to do my make-up. Eventually coming in far too late with a smile on my face because it had been such a good night. They will have seen a few times like this, times when I’ve been a ‘normal’ 20/21-year old – going out with my friends, coming in too late and sorting out the mess of make-up and shoes the next morning.

In February, they will have seen me disappear for a week as I went back to my parents’ house because Mum was deteriorating rapidly. They will have seen me curled up on my bed, sobbing into my teddies after that first night, because Mum was dying and there was nothing I could do. Sitting, staring at screens the following morning, jumping on every phone call. They will have seen me a week later, my world changed forever as Mum went into a coma and, for a few days, looked as if she might die. I am still so grateful for all that ensured she didn’t, but am still regularly plagued by flashbacks of those days.

In March, they will have seen me both surprised and delighted at the number of cards and messages I received for my birthday (once I’d got home from working on a residential!). They’ll have seen me read each one individually and arrange and rearrange them on my shelf. They’ll also have seen me become upset as I went to bed, realising that Mum would probably never see another birthday of mine.

In May, they will hardly have seen me. I spent most of my days working on my essays, determined to get the grades I knew I could achieve. Determined to prove wrong those people who suggested I should take a year out. Setting my heart on achieving good grades, partly for myself, and partly just in case they are the last grades of mine that Mum will ever see.

It’s now July and I’m moving out for two months. My rent is up and doesn’t re-start until September. The walls will see me take each card off my shelves with care. Prising each photograph off my noticeboard, releasing each letter from its place on my wall. Standing confused, staring at those five odd socks wondering quite where their partners have gone.

This year, York has become my home and I don’t want to leave. Mum may be ill, but while I’m in York, that fades from my mind slightly. This year I’ve made new friends, strengthened existing friendships and become distant from others. I have continued old volunteering projects and signed up to new ones, taking so many amazing opportunities which have come my way. I have grown in confidence in my job and been rewarded with increased responsibility. I have learned more about my degree subject, written assignments on interesting topics, and dragged myself through essays on not-so-interesting ones. I have chatted to my MP about getting young people voting, been part of BBC’s election coverage, brought a mental health awareness campaign to campus, raised over £400 for cancer research and started this blog.

All day as I pack up and contemplate returning to my parents’ house, one wonderful quote from my favourite wise bear, Winnie-The-Pooh, sticks in my mind: ‘How lucky I am to have something that makes saying goodbye so hard’.

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A Rainy Sunday Afternoon

~ Naomi ~ 1 Comment

It’s finally the summer holidays (woohoo!) and while ‘summer’ is a fairly loose definition for these particular holidays, the long break tends to be welcomed by students and teachers/lecturers alike.

Today is a rainy, July, Sunday. Some might say a normal British summer day! I don’t know what you’d be doing on a day like this during the holidays but I’d usually be curled up in a blanket, watching ‘Breakfast at Tiffany’s’ and photo/video editing, knitting, crocheting or something similarly creative. I might even be working on my dissertation if I was feeling noble. Either that or I’d be baking with my brother, singing and dancing around the kitchen. I might be wasting my day on the ‘Sims’, ‘Monopoly’, or ‘Just Dance’. Basically, I would probably be doing something fun, mindless and comforting, something not too taxing; generally just chilling – the exact thing that summers are made for.

Instead, I actually let myself have a bit of a lie in for once, went on a run as I do every morning, then settled down to work. To revise for the exam I have in a few weeks.

I was joined there by my brother who is stuck behind a desk doing essays and revision. We’re both behind these desks pretty much whenever we’re not at work (or out somewhere else). For me, that means working four days a week and spending my evenings and weekends revising for my upcoming exam. My brother works three days a week and does his uni work the rest of the time. Both of us have had our education affected by Mum’s illness this year. I won’t say any more about my brother, because that’s his prerogative, but I’ll tell you a bit about how it’s affected me.

I was keeping on top of all my uni work until February, when Mum almost died. Even when I had to go home from time to time, when Mum went into hospital, I would come back and work hard to catch up with anything I’d missed, even if that meant missing social occasions or staying up late sometimes.

When Mum went into hospital and became unresponsive, I missed a few days of uni. I tried really hard to stay on top of things, and even came back for lectures when I could (home isn’t too far from uni), but I did miss a few lectures.

Now, statistics has never been my strong point. It’s not my favourite subject and if I could just see where the numbers come from, it might help, but I’ve been working hard at it all year, doing the reading, attending the lectures, spending hours after each class trying to understand the material. Standard student stuff, but it just takes me much longer for stats than my other modules!

I tried so hard to catch up on everything when I got back to uni, but I was still coming home at weekends to see Mum and the rest of my family. I was still worrying about my other family members which made it hard to concentrate on my studies. I still spent time updating friends and family on Mum’s condition and talking to various people about how we were all doing. All of these things gave me less time to catch up on everything I’d missed.

A few weeks on and we were approaching exam season. Stats builds on previous week’s work, so as soon as I missed one week, the next lecture became harder to understand and I got more and more behind. In the end, I made the decision to apply for mitigating circumstances and postpone the exam until summer. I still had all of the essays and work for my other three modules in on time, but I just knew there was no way I’d be able to learn all the content I needed to for stats before the exam.

So that brings us back to this rainy Sunday afternoon. Sat, reading a heavy statistics book, attempting to understand multiple regression. Mum asleep in the lounge, Dad watching the Tour De France, one brother baking and the other working in the same room as me.

I can’t wait for the evening of the 12th August when anyone who happens to be in York is welcome to celebrate with me for my first guilt-free night off in months and months!

Dear Humans of Facebook

~ Naomi ~ 4 Comments

Dear Humans of Facebook.

Tonight, I noticed that my blog from last week had spiked in Facebook likes. I decided to try and find out why, so I could thank whoever had shared it.

I found the post on a Facebook page with almost 300k likes. It’s an American page and is not a charity or organisation I’ve come across before other than briefly on Twitter, but they clearly do some great work.

They’d posted it as a recommended read, and initially when I saw it, I was delighted! There are over 1200 likes and over 250 shares. I then began to read the comments, of which there were about 40. There are some people who were clearly hurt by my blog, or by life, who were angry with me, or cancer, or life (or all three) and they responded by writing their feelings (which they’re completely entitled to do) on this post.

I’m going to be honest, some of those comments really hurt me. They made me cry. They made me question myself and my writing.

Since then, I’ve had a wonderful army of friends and family message me. Some of them have responded to some of these comments, most of them have just made me laugh and cheered me up. I’ve also reasoned with the ratio of negative to positive responses. I’m fine now and I guess whenever you post things on the internet, you open yourself to criticism, but I’d like to take the time to respond to some of the sentiments expressed, because I will feel more at peace with myself once I’ve done that.

To the people telling me I’m selfish

I can totally see where you’re coming from and this is something I worry about every day. Am I being selfish? Should I give up everything I’m doing and go to stay with Mum? Should I leave uni, quit my jobs and just go home?

That was my first instinct, yes, but I’ve spoken about it with my family and we don’t believe it’s the right thing to do. We need normality. We don’t know how long Mum has left and when she was first re-diagnosed it could well have been years. I can’t spend years by her side – firstly, we’d kill each other, secondly, what good would that possibly do?! Mum is completely on board with this, one of the first things she said upon waking from the coma she was in was to tell my brother and I to go back to uni. Heck, she carried on working herself until she was in a coma. Furthermore, how are we supposed to afford to live without working? I think we’d struggle.

With regards to my writing about how I can’t plan or I can’t do certain things I might want to do, I’m not writing this to complain. I don’t feel a sense of injustice about it at all and I’m in no way angry or resentful of my Mum for being the reason I can’t do these things, I’m simply trying to explain to those who’ve not been in this situation how it impacts each area of my life.

To the people telling me I’m whining

You will find I don’t do whining. I do getting on with life. Some people actively try and get me to talk about things related to Mum and I actively don’t, unless it involves sorting something out or trying to understand something, because I’m a very solution-focused person and I don’t see the point in whinging or whining. I blog because it’s a lonely situation to be in and others are in that lonely situation to, and I have had messages from people thanking me for helping them feel less alone. I blog because there is so little out there for young adults who have parents with a terminal diagnosis, and I want to use my voice to change that. I blog because I find it cathartic.

To the person who told me I can’t spell

I’m English. We use ‘s’ rather than ‘z’ when writing the word organise. I’m sorry if that offends you too much to read my blog.

To everyone who referred to me as a caregiver

Yes, I am classed as a ‘Young Adult Carer’ according to the local carers charity, something which I’m still coming to terms with. But please remember that first and foremost, I am a daughter of an amazing woman who is dying in front of my eyes due to a really crappy disease. I am hurting, I am coping, I am trying to come to terms with things.

To everyone who told me I’m not dying

Firstly, you know nothing about my life so you don’t actually know that. That aside, I’m not dying, but my Mum is. Someone who I’ve known all my life. I’d argue that a part of me is dying because she’s been such a huge influence on me and yes, some of her will live on through me, but equally some of me will almost go with her.

To the people who told me to ‘get my priorities straight’

Mum is my #1 priority. Everything in my life is organised around that. Next week I’m working on a residential – but the staff are aware of my situation and there is a backup staff member in case I have to go home. My supervisor at uni is aware of my situation and when necessary I go home rather than staying at uni. I have missed lectures and I have had to use mitigating circumstances. I’ve had to move an exam to summer, and therefore revise all summer, because I missed some of uni to stay with Mum. I have lost touch with friends because I’ve been home rather than going out and socialising on weekends. I’ve missed their birthdays, their concerts, their celebrations and it’s amazing any of them have stuck by me to be honest! My Mum is my priority but I also have a life to live.

To the person who said they hope my Mum uses her strength to smother me while I sleep

Did you actually read what you wrote? (Also I sleep upstairs when at home and Mum can’t currently use the stairs so hopefully I’m safe for now!)

To the people who said I see my Mum’s illness as a nuisance

Yup, that’s cancer for you! It is a damn inconvenience and a pain the backside for all involved.

To the people who said I need a reality check

Every single time I see my Mum disappearing into her armchair, every time I see her knitting baby cardigans for the grandchildren she’ll never meet, every time I see the ice cream tub of medication in the bathroom, the hospital bed in the lounge, the ‘get well soon’ cards all around the house… I get a reality check. I have seen my Mum almost die and come back to life. I have fed her when she couldn’t move her arms, wiped her face when she could hardly speak, talked with her when she was seeing a dinosaur on the wall. I’ve had a lot of reality.

To the people who said ‘I’m making it all about me’

I’m writing from my point of view. I can’t write from my Mum’s point for view (or my Dad’s or my brothers). I write personally from the heart about how I’m experiencing the ups and downs of this situation. Please refer to the response about whining for why I write this blog.

To those who say they hope Mum never reads my blog

She reads whatever I post. We chat about it, we chat about a lot of things as a family. When I’m unsure about something I ask her before posting it, and I asked her before starting this blog.

To those who ask me to think how my Mum is feeling…

…having brought me up for years

My Mum is proud of me. My Mum is incredible and I hope that some of that is reflected within myself. My Mum loves spending time with me and I love spending time with her. I help around the house as much as a possibly can when I’m home (and frequently do things when I’m not, whether it be supporting other members of my family or buying suncream).

…when she doesn’t have long left

My Mum has a strong Christian faith and is incredibly peaceful. I admire her faith and her strength so much, I think it’s amazing.

Finally, to everyone who asked what it’s like being me (normally in a slightly less polite way!)

It’s damn hard a lot of the time, but also wonderfully brilliant at times because I have a loving, caring, family and some wonderful friends. I am so grateful to have so many people around me who care for me so deeply, and I never take that for granted. I am lucky that I have had time with my Mum to learn more about her, to develop our relationship, to ask her questions. Yes, I struggle and I suffer. I frequently wake through the night with thoughts, worries and flashbacks. I cry often. I get stressed. I don’t want to do into things any further then that because I select what I choose to publish online. I can assure you, though, that I am both deeply hurting, and deeply grateful for the situation I’m currently in.

I’m sorry this is so long, but I wanted to address as many points as possible. Thank you to anyone and everyone who has read it through. Thank you to all those who’ve sent me such lovely and heart-warming messages and comments. Thank you to everyone who continues to support me and thank you to everybody who has shared my writing.