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Skiing

~ Naomi ~ Leave a comment

My family have gone skiing!

They set off this morning very early, I think. They’ve gone to France with another family or two. The three of them love it… the four of them used to love it, but it’s never been my cup of tea. I went a couple of times, then I spent a few years staying at friends and grandparents, once I ‘chalet girled’ it and once I stayed at home.

I remember two years ago I felt weird contemplating the thought of my family being away whilst I was at uni. It felt very odd. In the end it never happened. Mum decided to get checked out before they went, I think she had some back pain or something, and that was when the terminal diagnosis occurred so my brothers went without the parents.

I suppose life is moving on again. We didn’t holiday while Mum was ill because it was impossible to plan anything that far in advance. That was something which took a long time to get used to, and now I’m struggling to get used to being able to plan again – it’s funny how these things work.

It feels odd now, that they’re away and I’m not with them. But it’s another things that shows we’re moving on, normal life is returning. Also, I’m growing up without them, I’m my own person making my own decisions rather than functioning solely as part of a family unit. Life really does go on…

Two Years

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Today marks two years since I heard about Mum’s diagnosis.

I don’t really know what to say. There isn’t really anything to say, I guess. It was the start of the longest, weirdest, 20 months of my life. Mum looked well. I couldn’t compute how she could be so ill and look so well.

One day I’ll write a post about coping with that news. But at the moment I’m struggling with getting my brain to do anything much, so today is not that day. I miss Mum. I miss the person I was two years ago. I desperately want the old me back and my old life back but I know that can’t happen. I will never be the person I was two years ago, because so much has happened and changed, but hopefully I can become a new person, with some of the old spark.

Check Your Lumps and Bumps!

~ Naomi ~ Leave a comment

Cancer is a word we don’t like to say. It sticks in your mouth like treacle. It doesn’t feel nice. It doesn’t sound nice. It’s a word that invokes fear in some, memories in others; to some it means nothing.

This Thursday is World Cancer Day, a day designed to get people talking and thinking about cancer.

I’ve written about Mum for months; about her last months of life, and our first months of life without her.

But through all these blog posts, I’ve never really gone back in time and spoken about her full story.

Mum was diagnosed with cancer, initially, in August 2012. She found it super early – before even a mammogram would pick it up. She had a lumpectomy that September and started on a course of chemo. We were upset, but not overly worried. She had caught it early so prognosis was good. The chemo, and radiotherapy were to wipe up any remaining cells rather than to target a particular lump. Mum spent a week at home after each round of chemo, and then went back to work for two weeks. When radiotherapy came around she’d simply pop down during her working day, get zapped, and head back to work. Cancer was annoying, but she wasn’t about it let it get in the way of living her life.

By Easter 2013, cancer was gone and life started to get back to normal. Mum was on tamoxifen, a drug developed with help from Yorkshire Cancer Research, but apart from that cancer was a thing of the past and we all moved on.

In February 2014, Mum found herself somewhat achy and decided to get checked out before going on holiday. That was when we found out that the cancer had returned, and was terminal. Mum had a good six months of relative health while on hormone treatment. When it stopped working and she started chemo again, there were a few hospital stays but Mum was still working, right up until her brief coma in February 2015 (February isn’t the best month, apparently!). She never worked after that, and though her health picked up a little for a short while after, it then declined steadily until she died in October 2015.

Mum’s story is one cancer story. One story out of the 338,263 new cases of cancer in 2012.

Cancer didn’t die with Mum, either. I might not have cancer, but I’m still affected by it. I don’t want cancer to be a part of my life anymore. But like anyone else who’s encountered cancer, I am hyper-vigilant for any lump or bump, any mole… anything that might indicate that cancer is making an unwelcome appearance in my life.

My Mum died. She was an incredible human being and will always be part of me, but she’s not here anymore and it hurts. It’s been over three months since she died and I still cry most days. I still have trouble sleeping, rarely sleep through the night, and dream about Mum dying over and over again. I still keep my phone on me at all times and check it repeatedly. Images and memories of Mum’s illness play over and over again in my mind.

One night I worked out that Mum’s cancer was all my fault (don’t ask). As much as people tell me it is in no way my fault and just a random cell mutation, as much as people reason with me and explain this to me, I still get dark nights where I feel as though I’m being crushed under the weight of guilt.

Cancer didn’t just take Mum’s life, but it took some of mine, too. Some of my brothers’, my dad’s, my aunt’s, uncle’s, grandad’s. It reached my friends, through me, and the friends of all my family members. It reached my lecturers and others who have helped me. It’s not something which is isolated to the sufferer and it’s not something that goes away when the person dies.

This World Cancer Day, if you do nothing else, please just check yourself for any suspicious lumps or bumps. Cancer Research UK has a guide on checking for cancer on their website. Catching cancer early can increase your chances of recovery. Life gets busy and it’s so easy to procrastinate these not-so-fun tasks, but please take it from me: it’s important.

If you’d like to donate to Yorkshire Cancer Research through my JustGiving page, please click here.

UK Blog Awards – Finalist!

~ Naomi ~ 8 Comments 
finalist_twitter

I woke up this morning to an email from UK Blog Awards telling me that I’ve been shortlisted as a finalist!

I was incredibly surprised, but also incredibly overwhelmed. I think it’s going to take a few days to sink in. I’m just one little person, writing about bits and bobs of my life. A life, which in the grand scheme of things, is largely insignificant. Now I’ve been invited to a networking event and an awards evening in London! (To some of you, London is just a city, but when you’ve grown up in a small village, Leeds seems like a big city, and London always holds this magical charm of endless possibilities along with incredible confusion as to why people move so quickly and where the sheep are).

I just want to say a huge thank you to everyone who voted and who shared my blog and asked others to vote. Also to everyone who reads what I write and who shares what I write, including the charities who constantly show me their support. I really am incredibly grateful.

Two Very Different Moves

~ Naomi ~ 2 Comments

I started planning moving away to university months before it happened. After sixth form, I took a gap year, so by the spring before I went to uni, I knew for certain which university I would be going to and what I would be studying. My birthday is in March and I’d asked for ‘bits for uni’. Mum and I spent the day in York shopping for bedding, pans, and decorative bits and bobs. I remember it as such a lovely day; proper mum-and-daughter time. It was filled with excitement of new adventures to come. She’d just been given the cancer ‘all-clear’, and things were really looking up.

When the time come to move to uni, my whole family came (it was a bit of an event). Mum had bought me a big tub of chocolates to share with others on my floor (after all, chocolate is a fairly sturdy base for friendship). It was an emotional but exciting and happy time.

I moved again this weekend. My first ‘proper’ move since I first moved to halls – I’ve moved between home and uni since then, but only to and from halls so it never felt very different from that first time. But this time, I moved out of halls and into a real house.

I’ve had to move out of halls because I’m not returning to uni this January. I felt the need to remain around my friends and support networks, so I needed to find a place to live fairly quickly (or sofa hop for a bit, but that didn’t really appeal). Thankfully, with the help of a local youth charity, I found a place very quickly, living with a lovely lady and her two cats.

I’d been thinking about Mum a bit less recently, but over the last week I’ve been missing her more again. I always low-level miss her, but it had been getting a little easier and memories of ‘well Mum’ had begun to replace some of the ‘sick Mum’ memories. Seriously missing Mum returned though, and with it came ‘grief attacks’ and many moments where it felt like every part of my body was breaking, all at once.

When I ordered new bedding (my new place has a bigger bed), it reminded me of that day I spent with Mum in York. A happy memory, but a memory nonetheless, one that can never be repeated. Packing up my things, I relived moments that have happened in that room. It was my home, my safe place, throughout Mum’s illness. When I returned from hospital the night before she slipped into a coma, that was where I landed. When my friend came to see me and started to cry, it was that room. The walls of that room have seen more than a student room should ever have to see. It was the place I ran to when I heard that Mum had died.

On Saturday, the three month anniversary of Mum’s death, I shut the door on that room for the final time. My very kind new landlady helped me move out. Dad will see my new place at some point, but Mum never will. She will never see my new room, never meet the person I’m living with. She’ll never see me grow and learn and laugh and cry and that breaks me. So many times in the last few weeks all I have wanted is a hug from her. A bit of reassurance that I’m doing okay and that the decisions that I’m making are not ‘wrong’ ones.

Living somewhere new is a new start. It’s a chance to move on from Mum’s illness and death. A chance to start piecing my life back together, to build it back up again. I wish it were that simple though…I still jump when the phone rings, and cry-laugh when I’m reminded of a Mum quirk. Mum is all around my room, in photos, in the plaque she bought me last Christmas, and in the books that stand on my drawers. Mum will be brought up in job applications when it comes to explaining why I’m not studying right now, her name will stick in my throat every time a friend or family member of my housemate visits and asks what I’m doing at the moment. It’s not as simple as ‘not being affected by cancer anymore’ because we still are – I still am – and probably always will be in some way. That said, I can choose to let it define me, or I can choose to move on and begin to build a new life. I hope that by moving, that is what I’m beginning to do.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/two-very-different-moves_b_9087128.html

Campus Society Article: What it’s like caring for a terminally ill parent when you’re at university.

~ Naomi ~ Leave a comment

I remember the day Mum stopped being able to walk. I had to help her from her bed to her chair and wheel her to the bathroom. She could still wash herself at that point and once she’d finished I wheeled her back, found her medication and fixed her some lunch. I remember it so clearly because it was the last time I had some quality time alone with her.

I didn’t know that I was a carer until I’d been caring for over a year. Mum was diagnosed with terminal cancer during my second term of university. She died at the start of my final year.  I knew that none of my friends had a terminally ill parent, but that was about as far as my thinking went. It was only when I met someone from the charity York Carers who started asking me questions like “Do you worry about your Mum when you’re in lectures?” that I began to realise how different my student life was compared to my peers.

I didn’t think I was a carer because I still lived at university.  I hadn’t realised that a lot of things I did were things that my friends didn’t do. Like going home more a lot more often and checking in on my family every day. When going home, most of my friends would be waited on hand and foot, but even though I did still take my washing home (so much cheaper than on campus), I normally did it myself, and often ended up cleaning and cooking a fair bit too. I also didn’t appreciate the toll of emotionally supporting my family and worrying about not just Mum, but also about my Dad and brothers and how they were coping.

My caring responsibilities started slowly and increased steadily by the time Mum died, I hardly realised how far my life had shifted from that of a normal student. To begin with, it was just a matter of visiting home more often to see her. But over the course of Mum’s illness I’ve had to do many more things including visiting her in hospital, helping her drink, fetching her medication, and moving her around the house.

When she was in hospital, I occasionally missed lectures and in my second year I had to postpone my summer exam to give me enough time to catch up on all the work. I’m the eldest of three children, and the only girl, so I definitely felt some responsibility for managing the house while Dad was in hospital, transporting Mum’s family, or working.

Perhaps the biggest area of my uni life being a carer impacted was my social life. I could never commit to anything too far in advance for fear of letting people down and when I was at uni I often spent time catching up on work instead of being out with my friends. To begin with my friends were amazing. I lived in halls and we’d often crash each other’s rooms. I remember one friend arriving in my room with chocolate fingers and a film one night when I was having a particularly bad day. But in second year, as we moved out of halls and I had to go home more often, it became harder to keep those friendships up. The more time I spent at home or in hospital, the more distant I felt from uni and my friends there. I drifted from them as their lives moved on and mine stayed stuck in cancer-land. It wasn’t their fault, and whenever I do contact them or see them around they’re really supportive and still invite me to things. It’s just how it was.

Other young adult carers have shared similar experiences. Through the power of Twitter, I found two other carers with stories a bit like mine. Maariyah, a first year student at the University of Portsmouth, has been caring for her Mum for years and like me didn’t realise she was a carer for a long time, “I didn’t actually realise I was a carer until I got older and realised my role” she told me. Jane, a master’s student, has been caring for her sister for most of her life and now cares for both of her parents, too. Both Maariyah and Jane live at home and travel into university for their lectures, which in itself gives them a very different university experience from their friends, but one I instantly
recognised.

Bethany, a first year student at the University of Bedfordshire, has cared for her Mum from a young age. She lives at uni too but, like I did, travels home often.

Both Jane and Bethany mentioned how difficult it could be to socialise. Having less time to see their friends might be an obvious one, but they also spoke about not wanting to cancel plans at short notice, letting their friends down, and Bethany said “because  of my caring role I don’t like to go out much and haven’t found the confidence to have a social life at uni.”

Thankfully, all three carers receive support from their local carers organisations and Jane is also supported by her personal tutor and a lecturer. Talking about her lecturer she says “she’s been a star, I honestly believe that without her I would’ve definitely dropped out of uni. She’s been my rock throughout the last few years, she’s always there for me both academically and personally.” These supports are lifelines. Helping carers to manage the various strains on their time and providing them with occasional light relief. I can relate to this, I’ve been incredibly well supported by both my academic supervisor and my college welfare team who have constantly gone out of their way to help me out. Once I discovered I was a carer and found York Carers, I began to receive support from them too which has been invaluable.

It is estimated that there are 290,369 carers in the UK aged 16-24 but the true number is unknown because so many young adult carers may not even recognise themselves to have a caring role. Out of those who identify themselves as a young adult carer, 25% won’t tell their college or university about their caring role. It isn’t quite clear why but often it can be because they don’t know the support that could be available to them, or they are worried about the reaction of their tutors. Under the Care Act, 2014, every carer is entitled to support to help them to carry on with their life. This includes the right for every carer to receive a carer’s assessment, assessing the needs of themselves and their family to make sure that they receive the support they deserve, such as help with the caring itself, assistance with travel costs, or enabling the carer to have some time away from their caring role so that they can do something else for a while.

Despite the difficulties caring can throw up, most of us wouldn’t want our responsibilities taken away. I got a sense of pride from caring, I love my families, and would rather care for them myself than have a relative stranger do it. Being a carer, I learned a lot. I learned about the issues facing a person with limited mobility, both in their house and when trying to get out and about. I discovered how non-wheelchair-friendly many places are and found a new appreciation for anyone wheelchair-bound. I learned how to support a disabled person around their home – and about the various gadgets available to help with that. I also learned things about myself, mainly that I’m more resilient than I ever thought possible.

Every carer needs support. There’s no reason that being a carer should stop you from attending university or college, if you want to. If you think you might be entitled to carer support, go to carers.org to find your nearest carers centre.

This article originally appeared on Dorms, the online magazine of Campus Society, check it out here.

A Little Update

~ Naomi ~ Leave a comment

I’ve gone a little quiet on here – at least in terms of writing about where I’m at.

I’ve had a lot of ‘missing Mum’ nights this week. Nights when I end up folded over, crying, silently screaming, wanting Mum back. It’s weird because before this week, I’d stopped thinking of Mum every day in that same way that I had been in the weeks since Mum died.

Tomorrow marks three months since Mum died. Tomorrow I’m moving out of halls. I’m excited to move and I’m ready to move. It is weird, though, because it will be the first place I’ve lived that Mum hasn’t seen.

The place I’m currently living is the place I’ve lived for the majority of Mum’s illness. There are a lot of memories in this room. This block is where I was when I heard that Mum died.

I’m ready to get away from here and make a new start. It’s also hard breaking away, though, because moving forward and rebuilding my life means leaving Mum behind. Mum will forever remain in 2015, at least in physical form.

 

An Open Letter To All Healthcare Professionals

~ Naomi ~ 1 Comment

I know that you’ve been getting a bit of bad press lately and healthcare seems like a tough area to be working in, whatever your specialty. From propositions for cuts in funding for student nurses, to the controversial junior doctors contract, nobody would blame you if you got home at the end of each day feeling somewhat disillusioned and deflated.

I want to let you know, that we appreciate you. We are so thankful for you and for the tireless work you put in, day in, day out. By ‘we’, I don’t just mean patients, but patient’s families and friends too.

Thank you to the nurses who looked after Mum. Thank you for affording her so much dignity right up until her final day. Thank you for always being so cheerful and chatty, no matter if we were your first or tenth family of the day. Thank you for talking to my Dad as well as my Mum. Thank you for chatting to us, her children, reassuring us with your smiles and kind natures.

Thank you to the nurses in the hospital when we visited Mum each time. Whatever ward we were on, whatever time of day or night we could always find one of you when we needed you. Thank you for giving Mum so much care and attention even in the early hours of the morning when you would probably have rather been in bed. Thank you for taking the time to talk to Dad, to go through medications and charts with him and give him all the time he needed when you no doubt had other patients to see. Thank you to the nurse who spoke to my brother and I on the night Mum was in a coma – you were rushed off your feet but took the time to speak to us and let us know where you were if we needed you.

Thank you to all the health care assistants. You may think your work went unnoticed, but not by us. We saw what an excellent relationship you built up with Mum. We saw you encourage her to walk again. We saw you help her wash and dress. We saw you provide her with dignity in a truly horrendous time.

Thank you to the doctors who came and visited Mum multiple times a day when she was in hospital. Thank you to the GPs who did home visits multiple times a week when Mum was home. Thank you for not just checking on Mum, but also on us, her family, to make sure we were managing.

Thank you to the GP who came around the day Mum died. Thank you for being so calm and thoughtful. Thank for you being so kind at the end of what must have been a long week for you. Thank you for reminding us where you were should we need to talk to you.

Thank you to all of the healthcare staff who have been there at other times, too. To the GP practice who is always at the end of the phone and who rang me on the day Mum died. You have always been there should I need to talk – whether my ‘named GP’ was in or not. To the receptionists who greet me with a cheery hello every time they see me, even if they’ve just come off the phone to a distressed patient. To the practice manager, facilities manager, and other members of staff who desperately want to improve the (already great) service they offer, and listen to patient’s concerns whenever they crop up, then do whatever they can to try and resolve any issues quickly and with as little fuss as possible.

Thank you to the A&E departments who are there 24 hours a day, 365 days a year. Who deal with anything from my brother’s failed attempt at catching a ball, to my severe asthma attacks a few months after Mum was diagnosed. Thank you for always listening to what we have to say and treating us as best you can. Thank you to the paramedics who picked me up over summer when I became unwell, who reassured me and calmed me down when I was struggling and didn’t leave A&E until they knew I was settled.

Thank you to every single healthcare professional who has been there for me, my family, and anyone else in the UK not just in the past few years, but for however long you’ve worked. Whether you’re a porter, consultant, HCA, registrar, GP, midwife, paramedic, cleaner, receptionist, chaplain, or someone else working in a healthcare setting (sorry if I’ve missed some titles out, there are so many!), your job is so important, the work you do is invaluable, and we are so grateful to you.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/healthcare-professionals_b_8977478.html

You can vote for me in the UK Blog Awards 2016 by clicking here.

900 Cancer Diagnosises A Day

~ Naomi ~ 3 Comments

Someone just rang me up on behalf of Macmillan. It was someone asking for donations, as you might expect (I don’t think they’ve ever rung me up for anything else, and yes you can get annoyed at cold callers, but at the end of the day it’s their job and at least this time it’s for a charity not for PPI or something). The line used to get donations this time was ‘900 people are diagnosed every day with cancer in the UK*’.

900 people. Every single day. Now of course, their reason for telling me this was to get donations, but 900 people is a LOT.

That’s 900 people who are hearing the news every day, and then 900 people who are going to have to go home and tell their family and friends. 900 lots of family and friends who are going to have to hear the news that someone they love has cancer. Well over 900 lives that are going to be affected by cancer on any given day.

Not all of these will be terminal, like Mum, but some will be.

It makes me so angry. I hate this disease. I hate what it does to people. Not just to the people diagnosed – but their family and friends too. Look at my family – a unit of 5, plodding along. Mum diagnosed the first time and we did okay. We accepted it, we dealt with it, we brushed ourselves off and got back up again.

Then round two hit. My youngest brother is doing okay at the minute. But at 15 years old he saw his Mum for the last time, and that shouldn’t be something which happens to anyone. My middle brother is doing okay at the moment too. He’s in a decent job with bright university prospects. But last year it hit him hard, he had an incredibly difficult time at university and ended up not pursuing that particular course and that particular uni. Dad’s taking things in his stride but it’s clear he’s not exactly ‘living the dream’, so to speak. I don’t want to write much more than that on the 3 main men in my life – it’s their life to share if they want to and not really my place to do it for them. But they have been deeply affected, as anyone would be if their spouse or Mum died?

Me? Well, it’s been 2.5 months since Mum died and almost 24 since she was diagnosed. I’m not back at uni yet – it doesn’t feel possible at the moment and my GP was fairly explicit that she didn’t think now was a good time to go back, either. I’ve been struck down with anxiety so bad that it can take me a long time to even venture as far as the kitchen opposite my room, and that’s if I make it.

I’m working on it, but I’m currently faced with having to find a new place to live, and new support, which isn’t exactly helping. I have found an absolutely brilliant charity this week though who have really been helping me out, and I am so grateful.

Building my life back up is not something that is going to be quick or easy. It’s going to be difficult and it’s going to take time. My Mum hasn’t just died, but she was ill for 20 months and if anything, that’s currently affecting me more.

I get frustrated often. I am desperate to get back to the person I used to be. The person who was able to hop on a train and nip down to London for the day. Who spoke in front of rooms full of people. Who enjoyed living and learning. Who socialised. Who never stopped. I used to be able to do all of that and now some days I can’t travel as far as 3 feet, and I feel unable to even comment on something on Facebook, never mind talking to hundreds of people.

Then I hear stats like this and I get even more frustrated because Mum’s cancer wasn’t a one off and it sucks. Cancer is affecting people every single day and I feel powerless to do anything about it. I’m not a scientist, I can’t cure cancer. I can’t take the pain away from people. I can’t cure their loved ones or better yet, stop them from even getting ill in the first place.

I wish I could, but I can’t. So I feel like I’m standing here watching it all from behind a glass screen. No matter how much I blog, no matter how much I scream or stamp my feet (figuratively, of course), it’s not going to fix this.

It’s times like this when I wish I had the faith that my Mum held so deeply. I wish I could believe in this bigger plan drawn up by a loving God. But I’m struggling to. I’m working on it. But it’s another thing which just isn’t that easy.

*At a very quick Google, I can’t find their evidence for this, but I didn’t look very hard. But whether it’s exactly 900 or not, it’s still a lot.

UK Blog Awards 2016

~ Naomi ~ Leave a comment

UK Blog Awards popped up on my Twitter feed with a call for nominations a couple of months ago. I procrastinated for weeks -my confidence isn’t all that great and I’m constantly surprised that people actually want to read what I write. It took a lot of persuasion from friends but eventually I nominated myself.

In all honesty, the main reason I decided to do it was to increase the exposure of this blog, not because I want tens of thousands of followers on Twitter or to be the most popular blog in the world ever or anything like that. I just know how alone I felt when Mum was first diagnosed, and how alone I’ve felt at times throughout her illness and eventual death and the more people who read this blog, the more likely it is that it will read someone who is in a similar position and needs to feel less alone.

I can’t cure cancer. I can’t bring my Mum back. I can’t change what has happened in our lives over the last few years. I can’t write off anyone else’s diagnosis or stop anyone else from going through the pain of cancer or of a loved one dying. All I can do is keep writing and hope that someone might read it at 2am when the world feels dark, and that it helps them to fall asleep knowing they’re not completely alone.

If you’d like to vote for me in these awards, you can do so here.