Saturday Afternoon

August 15, 2015July 4, 2016 ~ 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.

I Miss Our House Being Noisy

August 5, 2015July 4, 2016 ~ 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

August 4, 2015July 4, 2016 ~ Naomi ~ Leave a comment

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

July 30, 2015July 4, 2016 ~ 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’.

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.

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.

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

July 27, 2015July 4, 2016 ~ Naomi ~ Leave a comment

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’.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/packing-up-my-university-year_b_7838694.html?utm_hp_ref=uk

A Rainy Sunday Afternoon

July 26, 2015July 4, 2016 ~ 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 12^th 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

July 9, 2015July 4, 2016 ~ 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.

Hope Is a Special but Fragile Thing

July 7, 2015July 4, 2016 ~ Naomi ~ Leave a comment

I actively avoid thinking about the future most of the time. Part of this is because it sends me into a blinding panic of attempting to work out how I will ever get a job and afford a house and a cat (yes, it’s an essential item) and change lightbulbs and work out how to pay bills and all that terrifying “adult” stuff. I reckon these are fairly common worries for people my age… but the main reason I avoid thinking about the future is because Mum won’t be there, and why would I want to imagine or think about a life without my Mum?

This complete mental block about the future has been making life a little difficult lately. I can think a couple of days ahead, and I can put things in my diary a couple of weeks in advance if I know I’ll be able to cancel if I have to, but that’s about it. Try to imagine what it’s like to be unable to think about the future. Firm summer holiday plans are out of the question, and anything further than that is impossible: vague plans for Christmas, career or promotion ideas, dreams of living in another part of the country… Thinking about these things is a luxury that, for now, I don’t have.

It makes it hard to make good decisions daily. Only when you stop thinking about the future do you realise how much keeping it in mind affects your daily decisions. Eating healthily, exercising daily, going to bed on time, revising for an exam; in making all of these decisions, we factor in the future. If I knew I had no future beyond today, I’d probably stay up late and eat a tonne of chocolate… I definitely wouldn’t bother revising.

On Saturday, I went down to London for a session with Team v – a programme which takes 100 young people from around the country and works with them over nine months to lead three social action campaigns. I have been on the Team v programme since August 2012 (just before Mum was diagnosed the first time), starting out as a leader, and eventually graduating to be a senior mentor. This programme is the only thing which has been a constant in my life since Mum’s original diagnosis. The circumstances of my education, job, friends and family have all changed, but this has always been there and the people I have met through it are amazing.

Unfortunately, the programme is coming to an end this summer, the funding is ending. For me, and many others, this is a huge loss. In the same way that I don’t think about a future without Mum, I’ve been trying not to think of a future without Team v.

I’ve had times in the past three years when I’ve felt completely hopeless. Mum’s been ill and things have seemed dark, but because of Team v, I have stood up and spoken to a room of 100 young people excited about changing the world… it has lifted me up, and given me hope. When Mum was in hospital in February, I got a surprise bunch of flowers and a card from my Team v family, showing me that even though my friends are scattered around the country, they care about me, they’re there for me, and they understand. We have a strong bond spanning the length and breadth of the country, and despite the programme ending, that will always remain.

This Saturday, we were consolidating what we’d learned over the years we’ve been involved in the programme. We did activities which involved thinking about our own personal strengths, and speaking about the strengths and personal qualities of others. The first part of this is immensely difficult for me – like many of us, I can easily see positive qualities in others, but I struggle to see or articulate my own.

I left the day absolutely exhausted, but happy. I’m going to miss this programme so much, it’s made an incredible difference to my life (something I will write more about on my personal blog sometime over the next few weeks). But even though there will be no more leaders coming through Team v, no physical office space, and no staff working on it, it’s not disappearing completely. It will always be in my heart and in the hearts of those who’ve been involved in it. I will never forget the things I’ve learned or the people I’ve met through it. Furthermore, there are around 350 young people around the country who’ve been through the programme and who are going to continue to make a difference in their communities, and that gives me hope.

Being back with these people on Saturday gave me hope for the future for the first time in a very long time. It reminded me that though it may be a life without my Mum, there is a life waiting for me. Whatever happens outside of me, I am still me and I can still achieve amazing things. Hope and gratitude are so fragile, but so important. I am grateful for the brilliant people around me who lift me up, inspire me to hope for the future, and be the best version of myself that I can be.

Some of the Team v mentors, never missing the opportunity to dress up or take a selfie.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/cancer-hope_b_7736224.html

Cancer: An Organised Person’s Worst Nightmare

July 1, 2015July 4, 2016 ~ Naomi ~ Leave a comment

It’s that time of year again when everyone seems to be planning something. Plans for summer, post-graduation, jobs and housing… plans of moving away, plans of coming back; talk about travel to far-flung and interesting places. Everyone is beginning to look towards the future, planning what they want to do, what’s achievable and in many cases, what they can afford. People are signing new rent contracts, starting new jobs or internships, and there’s a general buzz of change in the air.

Ever since Mum’s diagnosis, we have tried to keep life as normal as possible and on the whole, I think we’re doing a pretty good job. One thing that we constantly struggle with though, is planning. Despite what books and movies say, cancer is not linear or predictable, and Mum’s has often proven even less predictable than most. You can’t plot it on a graph, and doctors can’t tell you exactly how long you have left to live – at least that’s our experience of it. One week Mum can show no warning signs at all; the next week her immune system, weakened by chemo, might fail to stop a common cold resulting in a hospital admission for a week being pumped full of antibiotics.

A few weeks ago, Dad was trying to give our extended family numbers of how many of us would be able to attend the family holiday in late August. I’m easy – I have an almost full time summer job and it’s over the university resit period (I’m taking one of my exams then as I couldn’t catch up all the work in time after missing lectures when Mum was in hospital), so I can’t go. My youngest brother and Dad are going. My other brother has prioritised Christian camp over family, apparently. As for Mum… we don’t know whether she will be with us then. We don’t know if she will be fit to travel then (if she’s not then Dad won’t go either, nor will my brother). She might be absolutely fine and happy to join them all at that point. So there we go, anywhere between 0 and 3 of us might attend that week. Imagine how hard that is for financing and planning the holiday!

For me, the lack of ability to plan is one of the hardest things with this cancer situation. I’m someone who likes things to be organised and planned. I live by my diary, own a ‘to do’ list book and print timetables to plan other things. I have friends who are doing internships and travelling this summer and every week the careers people email me with #YouNeedWorkExperience stuff. I love my job and wouldn’t change it for the world, but I didn’t feel I had the option to get an internship this summer for fear that Mum would go into hospital and I’d have to let them down. I don’t feel able to book a trip away for a week in case Mum deteriorates and I’m not there. Everything that I’m planning has to have a back-up plan for if I have to head home.

My last year of university is coming up and people are beginning to think about jobs, masters degrees, grad schemes, you name it. I’m looking at the next year and thinking that I hope Mum doesn’t deteriorate around an important deadline. I hope I can get through third year without mitigating circumstances and that I can graduate at the same time as my friends. I’m thinking that once I have (hopefully) graduated, I need to get a job (or further study) somewhere around here because this is where my support system is and Mum’s either likely to be very poorly or not with us this time next year, so I’m going to need those people around me.

The worst bit of all of this is that I find myself wishing that it was all over. That I could just get back to ‘normal’ life and be able to move on. But then I remember that this only ends one way: Mum dies.

As hard as this is, at least Mum is still here. At least I can still ask her for advice when I’m stuck and give her a hug when I’m struggling. At least, for now, she’s still at the end of a phone or an email. At least my Mum is still here to help me through it.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/cancer-an-organised-persons-worst-nightmare_b_7690034.html

Crying Is Not Weak

June 19, 2015July 4, 2016 ~ Naomi ~ Leave a comment

On Sunday, I ran the Race for Life with a few friends. It was great, the atmosphere was fantastic, we raised a good amount of money, and Mum was there to watch us go (something we could never have imagined a few months ago).

Sunday evening came along and I began to struggle with the reality of Mum’s condition again. While I’m at uni, I’m in a bit of a bubble. Yes, I know Mum’s ill, and that never goes away. I’m always waiting for the phone to ring and not a day goes by when I don’t think about it; but I’m shielded from many of the day-to-day impacts that cancer has on Mum and home and family life. Being at home is different – I have no choice but to confront it; she has limited mobility, she is more tired, and she is visibly unwell.

When I got back to uni this Sunday, the pictures of the race began to appear on Facebook. There are some absolutely lovely photographs, capturing lots of really special memories. However, when I loaded them in my photo editor, they came up alongside one from last year’s race. Mum looked like any other 50-something year old woman. She’s standing next to me, taller than me, and we’re both smiling and laughing at the camera. This year we’re still smiling and laughing, but Mum’s in her wheelchair, has lost weight and is rocking the post-chemo hair (it will be the next in thing in Vogue, just you watch…). It’s horrible to see someone you love deteriorate so starkly before your eyes like that, and understandably, I’ve been feeling slightly more fragile than usual for the past few days as a result.

I’m trying to accept that it’s okay to be upset, that it’s okay to cry. To most it would seem a fairly natural reaction to cry when someone you love is dying. I remember the Monday after I found out Mum’s diagnosis, I saw someone from the uni welfare team and they asked me why I wasn’t crying (I shrugged whilst mentally responding that I was on a new record of 4 hours no crying since finding out Mum’s diagnosis and would happily cry again if that would please him). Logically, I know that crying is okay and that it is a normal reaction to death, illness, and anything else difficult in life, but sometimes I find it difficult to do.

I don’t think I’m alone in this. I think many of us struggle to cry or to show we’re upset. We feel like other will see it as a sign of weakness. I think we often judge ourselves if we cry and view ourselves as weak – I know I do. But I’m slowly learning that crying, or being upset, is not a sign of weakness – they are simply emotions like any other. They are natural human reactions to difficult situations. Everyone has times when they are upset, when they cry, when they completely break down and sob into their pillow. Every single human on this planet has cried at some point in their lives. Not only is that normal, but it’s completely okay. These difficult emotions deserve to be felt, and hard as it is to sit with them and experience them, it is important and healthy to do so.

I don’t think we should be ashamed of being sad or upset. I’m not saying we should cry all the time (that would be highly unproductive and a bit weird), but when we need to, and when the time is right, I don’t think we should be afraid to just let it out – whether it’s with a friend, with a teddy, on your own, or watching the final episode of Gilmore Girls one more time because it’s just too perfect. Crying is not weak; it’s simply a release of the built-up, difficult emotions that you’ve been holding onto for too long.