Terminal Cancer

Packing Up My University Year

~ 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’.

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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.

Hope Is a Special but Fragile Thing

~ 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.

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

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Cancer: An Organised Person’s Worst Nightmare

~ 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.

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Crying Is Not Weak

~ 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.

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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.

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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.

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Race for Life 2015

~ Naomi ~ Leave a comment

On Sunday, I’m taking part in the Harrogate 5k Race for Life with four of my friends as ‘Team Fiona’, named after my Mum. These lovely people have stuck by me since Mum’s diagnosis providing listening ears, a comfy sofa and unlimited hugs. Each of us has our own reasons for taking part so here’s a quick post to share with you all why this race is important to us.

RFLBBeth: I’m taking part in the Race for Life for Cancer Research UK to raise as much as possible for this amazing charity. In the UK, one in two people born after 1960 will get cancer during their lifetime. I’m not great at maths, but that’s half of us. In the 1970s, only a quarter of people survived cancer. Today, more than half will survive for at least ten years all due to excellent research funded by charities like Cancer Research UK. Let’s make sure this progress continues!!

RFLGGrace: I’m taking part in the race for life for two very special people I know who are currently battling cancer, Fiona and Graham. Such events raise awareness and much needed funds, uniting the nation in the battle against cancer. I will feel proud to run the race for these two incredible people and hope that our efforts will one day help to eliminate this devastating disease.

RFLHHarri: I’ve known the Barrow family all of my life. Naomi and I have been friends since we were weeks old, so I can’t remember a time without her, and Fiona, in my life. It’s very important to me to run this race to prove to Fiona that I can do it. I also want to raise money so that Cancer Research can keep researching treatments and less people die from cancer in future.

RFLNNaomi: I ran the race for life with Grace last year and it was awesome. I wasn’t sure that Mum would still be with us for the race this year, but she is and that’s even better! Whilst running this race is not going to ‘cure’ Mum, it makes me feel like I’m doing something in what can often seem like a hopeless situation. I hope that raising money for Cancer Research, will enable them to continue their work, so less people receive the devastating news that someone they love is going to die from cancer.
RFLS
Sarah: The reason I’m running is because there’s no reason not to. It’s such an amazing experience to know that the money you raise WILL help people. I’ve never been involved in a charitable cause where the support for it is so unified before. Everyone is affected by cancer; directly or indirectly. So there’s no reason not to support the cause. But I want to live in a world where cancer is rare, not expected and not just accepted as what happens.

Now that you know why we’re doing this, please consider sponsoring one (or all!) of us for the race this Sunday. Any donation, big or small, helps Cancer Research to continue their incredible work. For our individual fundraising pages, please click our names. Our team page is here. You can also donate to my page by texting ‘RFLN94 £[amount]’ to 70070.

Carers Are Hidden Heroes

~ Naomi ~ Leave a comment

Carers Are Hidden Heroes

At the moment, there seem to be a lot of days and weeks dedicated to raising awareness of various issues (or celebrating donuts), encouraging people to share their stories and tag their friends. But how much awareness can be raised before it all fizzles into a blur of “share this”, “read that” and “use this obscure hashtag please”?

This week is carers week. I think it’s important to highlight this because carers are amazing. They are hidden heroes who care for loved ones day and night, often without a break or a holiday away from these responsibilities.

There are almost seven million carers in the UK of all ages, genders and ethnicities and that number is rising: at some point in their life, three in five people are likely to be a carer. Currently, about 700,000 of these carers are young people – children and teenagers who are caring for a parent, sibling or someone else every single day. Though many of these children wouldn’t wish to lose this responsibility entirely, because they love the person they’re caring for, it can mean that they lose aspects of their childhood; time that should be spent playing with friends or being a kid is spent instead shouldering more responsibility than any adult could reasonably ask of a child.

You can’t tell that someone is a carer by looking. They often go unnoticed, quietly getting on with things. Many might not even recognise themselves as carers, so their friends and family are almost certainly not going to pick up on it. Despite the lack of recognition, they carry on every single day; administering medication, completing personal care, cooking, washing, cleaning, and more. All of these things would cost a fortune if a care worker had to be employed to do them, but carers do them every day with no regular wage (apart from potentially some carer’s allowance). Unlike a paid worker, there’s no annual leave, no bank holidays, and no TOIL. Carers save our country huge amounts of money by simply loving and caring for a family member or friend.

My Dad is a carer – he cares for Mum. We’re lucky in that Mum is relatively independent at the moment, she can do most things herself. But she still needs help here and there, and that’s where Dad comes in. Sometimes I imagine Mum finds it difficult to accept this help, because she’s always been incredibly independent – imagine how frustrating it must be to realise that the simple things you’ve done yourself for your whole life, the smaller things you really take for granted, you now can’t do without help.

I wouldn’t class myself as a carer; I’m at university, so the only person I’m really looking after is me. I do worry about Mum, I keep in touch with everyone at home as best I can, and I’m forever waiting for the dreaded phone call, but I don’t have any regular caring responsibilities.

When I’m home I try to help where I can: walk behind Mum when she’s walking up the stairs, help her to reach things, cook and clean, other bits and bobs like that. But I don’t see it as an ‘extra’ or ‘caring’ responsibility; I see it as part of family life. I imagine many people who are carers feel the same and that is why they so often go unnoticed.

Keep your eyes open this week (and beyond). If you know someone who is a carer, or you think someone you know might be a carer, make contact with them. It’s hard to maintain friendships when your life revolves around medication charts and routine meal times. Invite them round for coffee, or go round to theirs. Ring them for a chat, drop them a Facebook message. Don’t go overboard by any means, just initiate contact. It doesn’t cost anything but will mean the world to someone who is tirelessly caring for someone they love.

Carers are incredible, they really are. They are hidden, hardworking and humble. Please try and notice them this week. Please reach out to them. If anyone deserves an hour of your time, it’s them.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/carers-week_b_7536544.html

Making Difficult Decisions

~ Naomi ~ Leave a comment

University is about more than just a degree. It’s about making friends, trying new things, and becoming independent. Personally, I love it. It’s given me a chance to escape from my teeny-tiny village (you can’t walk down the street without every man and his dog knowing about it the next day), and brought some fantastic opportunities. A major part of it for me has been about moving away from home. I’d taken a gap year prior to uni where I stayed at home working for various charities, and as much as I enjoyed it, I was looking forward to spreading my wings and having a chance to indulge in some self-discovery.

Despite some homesickness, I only went home a few times during the first term of my first year. By Christmas, I was more than ready for some TLC and a break from washing up but going into second term, I was determined to be more independent, go home less, and rely on my parents less. Then Mum was diagnosed, and that changed.

Half of me desperately wants to be a ‘normal’ student. To abandon my parents, make stupid mistakes and stay up too late most nights. I want to join my friends on nights out, spend weekends exploring the city and forget about my life back home.

The other half of me is different. At the time of diagnosis, Mum had somewhere between four weeks and four years to live (I know in movies they always have a definite length, but that’s not how it is in real life). My friends will probably have their parents waiting for them when they graduate. They can forget their Mum’s birthday, lob some flowers in their general direction a week later, and hope that makes up for it. If they get pregnant, they can reach for their Mum every time something freaks them out. Once their family has grown, they can visit with the grandchildren, using their parents as free babysitters (it’s cheeky, but it’s allowed, right?).

But for me it’s different. Mum probably won’t still be here when I graduate. She will probably die whilst I’m still at uni. I have to cram twenty or thirty years of visits into twenty or thirty days/weeks/months. I have to ask all my questions now; predict what I might want to know in years to come. Each birthday might be Mum’s last, so rather than forget it I want to make it special.

Should I continue to be as independent as possible and stay away from home, or should I return most weekends and spend time with my Mum? Should I spend my evenings binging on TV shows with my friends until 2am or making memories with my family? Will I regret not spending more time with Mum when she dies… or will I regret not spending more time at uni when I graduate?

There is no right or wrong answer to this. There isn’t a guidebook. There’s nobody to tell you what to do. Uni is different from school where you come home and see your Mum each night. It’s not like work where you’re home evenings and weekends (and even if you have your own house you can probably drive and visit your parents). University is an all-encompassing bubble and (for most) a once in a lifetime experience.

Every day I question my decisions and most nights I worry about whether I’m getting it ‘right’. Currently, I spend most of my time at uni, but speak to Mum on a regular basis. I go to her when I need advice or have a stupid question, and being able to do that is so wonderfully special. When I see her I cherish those moments and we take tonnes of photos.

Nothing is permanent in life and I’m lucky to have the chance to prepare for my Mum’s death where many don’t. That doesn’t make it any easier, but it’s something I have to be thankful for. Every day we all have to make decisions; some are bigger than others. I just hope I’m making the ‘right’ ones.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/terminal-cancer-planning_b_7467058.html

Nighttime Thoughts

~ Naomi ~ 12 Comments

I have a hole in my stomach.

It’s horrible, achy, painful and black. It expands and contracts as I breathe. It’s getting bigger and I’m scared it’s going to swallow me whole. I believe it’s called grief, but that seems such a small and insignificant word to describe a feeling so big and all-consuming.

Tonight, I spoke to Dad. I rang him up to discuss a website and various other bits and bobs. My uncle had sent me a photo of the family from the weekend. I enquired who a few people were (I get confused by distant relatives) and asked after Mum – she looked small and tired.

She’s sleeping more. Her bloods are fine. She’s just tired. There’s no point in scans now so we don’t know how the disease is progressing unless there are markers in her blood results. I guess her body is just tired of fighting this crap.

We spoke about summer. We don’t know how well Mum will be then… if she’s still with us then. Once again it hits me in the stomach, ripping me in two. Sometimes I forget for a moment – but never for long. Grief doesn’t allow that. Cancer doesn’t allow that. It doesn’t let you forget. As soon as your drop your guard, even for a second, it will strike again.

I spoke to my brother. I had to explain who the family members in the photograph were, how they fit, who they’re related to. It occurs to me that we might not only lose Mum when she dies.

Nights like these I don’t know what to do. Crying seems so pointless, yet often it just happens and I’m left exhausted when it finally stops. I want to curl up, I want a hug, I want someone to tell me it will be okay; thinking like that reminds me of being younger when Mum or Dad would stroke my hair and tell me it will be okay. But they can’t right now, because they’re not here, and it won’t be okay. I want to run and run; to keep running until I can’t. But realistically, it’s gone midnight, I’m crying – it probably wouldn’t be the safest idea.

So I’m left in a state of confused grief; clinging onto hope that we might have a few more weeks or months whilst attempting to accept that we probably won’t. I feel utterly lost and alone in this strange situation. Imagining a future without Mum seems impossible, I’ve never known a life without her and thinking about it sends me into a state of turmoil, so I don’t.

I wish I had someone to talk to who knew how this felt. My brother has gone to bed. I don’t want to burden my friends – I’ve been banging on about this cancer thing for over a year now and I imagine they’re getting bored of it. They have their own issues too, their own lives. I live with a cancer cloud day in, day out, but they shouldn’t have to, too.

Someone sent me a list of organisations in my area the other day. I look through them. There’s some ‘bereavement support’, but I’m not bereaved (yet) so that’s no good. There’s one for parents, siblings and grandparents. I am none of these. It only serves to make me feel more lost and alone. I know there are no words that can fix this. I know that it has to hurt, but sometimes hurting with someone who understands, instead of hurting alone, can help.

It’s half two, now. I’m hoping to get a night of unbroken sleep but I can’t remember the last time that happened. Lately I’ve been going to sleep with the radio on; it feels less lonely. The darkness can be scary when all you have are your thoughts, sometimes it can feel like you’re the only one in the world.

There’s no grand meaning to this post. No take-home message. It’s just me, speaking to you, whoever you are. Thank you for listening.