#LightsUpMyLife

Hello lovely person who follows my blog or social media (or just happened to stumble upon this post, in which case hello and welcome, here is a little more about me, and here is a bit about Mum).

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Mum – continuing to support us with charity events, even when she was wheelchair-bound.

As you may know, I’m currently fundraising for Martin House Children’s Hospice. This post tells you a little bit about all of that, but essentially, I’m attempting to raise £5000 in order to improve the lighting in the corridor of the children’s bedrooms to both improve the general light levels, and highlight the artwork on the walls. I’m doing this in memory of Mum, a year after she died.

It’s an ambitious target, and we have lots of plans for events and other things to help raise the money, but it would be amazing if we could hit £1000 by the anniversary of Mum’s death (Sunday). To help us on our way with this, I’m starting a social media campaign. It’s not particularly original, but hopefully it will be effective.

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Our little family of five ❤

The idea is, to post a picture of something which lights up your life (we’re lighting up a corridor, and Mum lit up the lives of many people, so it seems fitting). It could be your child, your cat, a friend, a sunset, a bar of chocolate… anything which lights up your life in some way. As you post the picture, tag 5 of your friends to do the same (there were 5 in our family so it seems like a good number), and text ‘FOYO53’ followed by £1/£2/£3/£4/£5/£10 to 70070 to donate to Mum’s fund, or, if you’d rather donate online, you can do so here.

Thank you to everyone who joins in with this, hopefully we can make a hug difference.

Xxx

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Dear Friend Whose Mum’s Terminally Ill

When my Mum was first diagnosed as terminally ill, I didn’t know anybody who had been through anything similar. Even now, I know very few, but unfortunately, I have a couple of friends whose Mums have recently been diagnosed as terminally ill. Even though my Mum died less than a year ago, I still feel like I’m not sure of the right thing to do or say, but here’s a stab at getting some words written down.

Dear friend,

I know you’re scared. Whether the terminal diagnosis was a few months ago and your Mum is doing relatively well, whether it was a few weeks ago and it’s looking like this week might be her last, or whether it’s somewhere in between, I know you’re scared. You don’t know what’s going to happen with this illness. You don’t know how long you’ve got left with your Mum. You have never lived a life without your Mum, so you can’t imagine what that might be like. It’s impossible. And while all of this is going on, while your entire world is crumbling and you want to scream and shout and tell everyone you see that your Mum is dying and it’s not fair, everyone else somehow carries on as normal.

First and foremost, a terminal diagnosis is crap. There are no two ways about it. Some people will try to tell you that it will enlighten you in some way, others will tell you that your Mum has “had a good life”, many people will try to find a good or a meaning out of the bad that is a terminal diagnosis. This might be helpful for you, I don’t know, but I know that I found it incredibly frustrating and it made me feel guilty for not feeling good about anything much at all. One day a friend turned to me and said: “it’s crap, isn’t it? It’s just crap”. I found that incredibly liberating because it is crap. Your Mum being terminally ill is crap. Your Mum dying is crap. And it’s absolutely okay to feel that way.

Take selfies. Go to cafés. Go on walks. Sit and watch TV together. Just spend time with each other. They’re memories you will treasure. All of your life you’ve been making memories with your Mum, but in making those memories, it’s unlikely to have ever entered your mind that your Mum might not be there to make more memories with in future. Now you know, though, so spend time with your Mum if you can.

You might have lots of visitors – don’t be afraid to ask people to leave. Having people around is lovely. Seeing people you’ve not seen in ages is great. Giving people the chance to see your Mum is a wonderful thing to do… but you’re their child. You (and your immediate family) are your Mum’s closest family members. You get first dibs. Allow yourself some time as a family, and if you want it, allow yourself some time alone with your Mum, just you and her.

Your Mum is going to change in front of your eyes. Sometimes in ways you might expect – perhaps she will lose her hair, or gain a new scar – but she will change in ways you won’t expect, too. She will look smaller than you’ve ever seen her, sleep for more hours than she’s awake, perhaps her skin will change colour. It’s horrible, it will make you cry and you might not want to cry in front of her – but it is okay to do so if you do want to. She knows she’s changing, she knows it’s horrible, she’s your Mum – let her give you a hug.

There will be emotions you can’t name. That doesn’t mean that it’s wrong to feel them. There are no right or wrong ways to feel, there are just feelings. Emotions are scary and can hurt, but even the most intense, most painful emotion will subside eventually. (Though eventually can feel like a very long time).

There will be nights when it feels like morning will never come. There will be nights when you don’t want morning to come because you’ve finally got through another day and you’re not sure you can do it all again tomorrow. You can do this, though. I can’t tell you how you do it, but you do. You get up again the next morning and you put a smile on your face, you cry in the bathroom, you drink a cup of tea, and you get on with your day.

You don’t have to have everything figured out. You don’t need to ask your Mum anything and everything you might ever want to ask her. People kept saying to me that I had time to ‘prepare’ and that I should ask my Mum everything I might ever want to know from her. I hardly knew what I would want to ask her an hour later, never mind a year or ten years later. I don’t know whether, when trying on a wedding dress, my first question will be “does my bum look big in this”, or “does this make me look ridiculously pale”. It’s too stressful to try and think of everything you might ever want to know – there’s no way to predict the future. You might have some things you know you will want your Mum’s help with (I asked my Mum for general wedding dress advice), but you really don’t have to have everything figured out – nobody does.

You will find strength you never knew you had. Strength within yourself, strength within your friendships and strength within your family. You may lose friends, especially if you’re young when your Mum is dying because people get scared and they stop calling. But you will gain friends, too, and you will realise that some friends who you haven’t spoken to in years, are the best friends you could ever ask for.

Your faith will be shaken. Whether it is faith in a higher power, in nature, in science, in people, or simply in good, it will be shaken because there is no rhyme or reason as to why this is happening. Eventually you will find faith in the little things again; in the warmth of a cup of tea, the squishiness of a hug, the sun illuminating the orange of the leaves, or something completely different.

Do whatever you need to do. There is no rule book for this, no guide. If you want to go back to work then do it. If you want to move back to your family home, then do so. If you want to do a charity skydive, a head shave, or a fun run, then do it, celebrate it, get all of your friends and family involved. If you don’t, and you just want to sit, watch TV and get emotionally invested in fictional characters, then that is absolutely okay too.

Please remember that you are not alone. There are friends and family who are right there alongside you, but if you feel like you need help from elsewhere, there are charities like Marie Curie, Hope Support (for young people), and Carers Trust who have helplines, forums, and online chats. It’s also perfectly okay to book a GP appointment and talk things over.

I promise you that whatever you’re doing, you are doing okay. You’re living life trapped in a nightmare, but you’re still breathing in and out, still checking in on friends, cooking the occasional meal and drinking copious cups of tea. You might not think you’re doing ‘well enough’, but I promise you that you are doing just fine.

Take a deep breath, you’ve got this, and if you ever feel like you haven’t, I’m only a text away.

Lots of love,
Your friend (who doesn’t know exactly what it’s like for you but has been through something similar).

Featured: http://www.huffingtonpost.co.uk/naomibarrow/letter-terminally-ill-mum-cancer_b_12370816.html?utm_hp_ref=uk-universities-education&ir=UK+Universities+%26+Education

How Do You Celebrate A Dead Person’s Birthday?

It was Mum’s birthday over the weekend. I asked my flatmate how you celebrate a dead person’s birthday. Perhaps with a caterpillar cake and a solitary candle, alone in a room somewhere. She said she’d join me on the cake.

It’s odd how arbitrary dates become meaningful when somebody dies. So many days have passed by since Mum died, most without a second thought, but the 23rd of each month, the monthly anniversary of her death, always sticks in my mind.

Mum was first diagnosed with breast cancer just before her 50th birthday, and it really wasn’t a ‘thing’. I was talking to someone the other day about how it literally wasn’t a big deal when Mum was first diagnosed. None of us thought it would ever come back. None of us were ever particularly worried about it. Mum had caught it early; she had a lumpectomy, and then chemo and radiotherapy. But we were told the chemo and radio were preventative not cureative. Mum would take a week off work for each round of chemo, and for radio she just nipped down while she was at work. Cancer round one flew past us and we barely blinked. It was nice to have Mum home a bit more, and she taught me how to knit, but beyond that life carried on as normal.

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That’s why, when the terminal diagnosis appeared, it was all a bit of a shock (at least to us, I think Mum had known there was something not quite right for a few months).

It was four years ago now that Mum was first diagnosed. It’s both amazing and horrible how much life has changed in that period of time. Four years ago I had never seen Mum with no hair, I’d never seen her in a wheelchair, fed her water through a sponge, or wiped her face for her when she couldn’t reach. I’d never made a tiny pizza cut into tiny pieces, made scrambled eggs, or cried into Mum’s unresponsive body. Dad had never sent Mum flying upon encountering a rabbit hole whilst driving her wheelchair, broken such horrible news to our family and friends, or driven to and from the hospital upwards of five times a day.

Even in the almost-year since Mum died, so much has happened. My brother got into Oxford, my other brother picked up a handful of GCSEs, and I got a new job. My granddad has been reinvigorated upon the installation of a pacemaker, my Dad’s flown his plane to new places, and my aunt and uncle have visited new countries.

24th September, Mum’s 54th birthday (or do you stop counting when someone dies?) passed, just as every other day has. People often say that they hope their loved ones are celebrating wherever they are but I’m not sure I believe in heaven, or an afterlife. I’m not sure I believe that Mum is alive in another world, space or time. I think she’s probably just dead. But her spirit and everything she’s taught us will live on in us.

One thing we have decided to do (which is perhaps a little cliché, but we’re rolling with it) is to raise money for charity. The local children’s hospice needs £5000 to install new lighting along the corridor by the children’s bedrooms, which will not only make it nicer for the children, but will also light up the artwork on the walls. Mum worked there for many years, before later becoming a trustee, and myself and my brothers have fond memories of spending time there while she was working. The hospice holds the values, vision, and beliefs that Mum held. It’s an ambitious target, but we’re hoping to raise this money through donations and fundraising. If anyone would like to make a donation in Mum’s memory, you can do so here, or by texting ‘FOYO53’ followed by £1, £2, £3, £4, £5 or £10 to 70070.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/celebrating-birthday_b_12199738.html

Children Can Bring Light To The Darkest Of Days

Cycling home today, I saw a lot of Mums pulling various uniform-clad little ones across traffic lights, book bags trailing behind them. I also saw a couple of late-teens-early-twenties-aged-child-looker-after-ers laughing and giggling with their rabble, jumping and skipping along the road.

I love seeing it, it’s so lovely to see people happy and enjoying life.

It does make me miss the various little people (and slightly bigger people) I’ve been lucky enough to take care of, though. Growing up, I babysat for the vast majority of the village from the age of fourteen (being a Beaver Scout leader and having younger brothers helps with that!). I’ve lost count of how many lounges I’ve sat in, stories I’ve read, and games I’ve played.

Through volunteering, there are even more hours spent looking after children to add up. The hordes that have come through Beavers, Cubs and Scouts (at one point I helped out at all three, spanning two different troops), and those I worked with when volunteering with Shout Out Leeds, with Team v, at a school or two, play groups and church.

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When working in a toy shop for a few years, I met a lot of kids, some very briefly, but there were other more regular shoppers who I got to know quite well. As a student ambassador for a couple of years, I interacted with children and young people of all ages. With many it would be a ten-minute chat, or occasionally a day doing various activities. But residentials were the best bit of the job: whole weeks getting to know some incredible young people, being privileged enough to share their stories, hear their worries, and listen to their hopes and dreams. There are so many young people who I got to know really well, but who I will never see again.

Out of all of the children I’ve looked after, there are a couple who have, perhaps, made the biggest impact on me.

The twins who showed me that even though the world can be ridiculously rubbish, there are still smiles to be had, and Peppa Pig can fix almost anything. They showed me that what my body looks like doesn’t matter, so long as it’s healthy enough to take them swimming. They reminded me that baking can be fun, giggles are infectious, and that mess can be joyful. Their Mum recognised that things could be rough, cancer was rubbish, and hugs from little people were sometimes all that was needed to calm a storm.

The three children belonging to my friend. The youngest, born just a month after Mum’s terminal diagnosis, reminding me that life is cyclical and though people die, and it’s crap that they die, people also live, people are born, and life is precious. The middle one has enough energy to keep a power station active for a week and an imagination to rival that of acclaimed writers, who continues to show me that dreams are important and life isn’t as serious as you think. The eldest, an incredible footballer with a big heart, always outside playing with his friends – a continuous reminder that life is greater than these four walls.

Finally, the two boys who I spent Summer, Easter and Christmas with for three years. The boys who baked with me, swam with me, built dens and Lego models with me, ran down to the river, came to the library and tackled buses with me. The boys who took me to the Great Yorkshire Show, the Royal Armouries and Leeds museum. The two boys who let me kiss things better, let me hug them, let me care about them through a time when the world felt so uncaring. However rubbish my night had been, whatever crap was going through my head, however downright awful I felt, they never failed to lift my mood, show me how to smile and bring light to the darkest of days.

Kids are incredible (as are many of their parents!). I’m not entirely sure how/why their parents decided I was responsible enough to keep their little people alive, but I’m so glad they did. I don’t know how many of them will remember me when they are my age, but I will remember many of them.

Summer has come to a close, and I haven’t done a single day of childcare. It feels very odd. I’ve finally emailed my student ambassador job to let them know I’m not coming back, and had a lovely email in response. I miss some of these children a huge amount. I hope that I can see some of them soon (though a couple of them moved to Guernsey which is mildly inconvenient). I’m growing up and moving on and it’s impossible to take everything from my past to my future, I guess it’s just about recognising that these experiences will always be a part of me and my life – they have shaped me and helped me grow into the person I am today; they have got me through some really tough times. Moving forwards is hard, leaving things I enjoyed and loved is hard – but ultimately, it’s right.

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There Was A Life Before Cancer

It feels as though cancer has been part of my life forever. It’s only been 4 years. Two elevenths of my life. Or 18%. So not all that much when you calculate the percentage, but I suppose cancer will always be part of my life, now. Having a Mum die of cancer does that to a person. The word cancer will always hit me in a way it never did before August 2012, and I’m more alert than I ever used to be for signs and symptoms of cancer in both myself and those around me.

So over time that percentage will grow. But however much it does grow, whatever number it hits, it will always be under 100%; I had a life before cancer, and there will be parts of my life to come that won’t be defined by this disease, either.

I’ve just cleared out my childhood bedroom at Dad’s house. It used to be called home, or my parents’ house, but none of those seem to fit any more. So it’s now Dad’s house. It’s been a few weeks since I was last there. It’s all a bit odd… When I first went to uni, I didn’t go home for weeks on end. But as Mum became more ill, I went home more often, so it never really felt like I was moving out… or moved out. I haven’t slept in that room since Mum’s coma in February 2014, I’ve always stayed in the spare room, but that’s another story for another day.

Going through my room was like travelling through time. With every cupboard, every drawer, and every bag, another set of memories was uncovered.

It’s amazing how many details of childhood get lost in the fog of memory and time. I had a house in a village and a small primary school and some friends. I had reading achievements, book cover design achievements, a poem in a published book. I had a church, a Sunday school, the Fairtrade stall, a few Christian camps. I had swimming badges, Brownies badges, Guides badges, Explorer Scout badges, and Duke of Edinburgh awards. I had music certificate after music certificate after music certificate. I had multiple art books, a jar of wool-ends from the granny square blanket Mum helped me put together, another jar of little paper stars I used to fold. I had tennis trophies, a table tennis bat, a few medals from charity runs. I had enough charity and volunteering t-shirts to clothe a small army.

I uncovered the life of a person with hopes, dreams, aspirations and confidence. Someone who looked to the future, knew what she wanted, and had long-term goals. Someone who got involved in anything and everything, and aimed to be the best at everything she tried. I uncovered the life of a person who feels so far removed from myself that I’m not sure I recognise them.

Some of losing these things is just growing up. It’s a natural part of life. But it’s almost as though cancer came into my life and slowly took my interests, and what made me ‘me’, erasing them from my life one by one.

I had a life before cancer, but I don’t want to go back to that life, because it doesn’t feel like ‘my life’ anymore. I don’t want to try and go back to the person I was before because it would be like trying to fit a jigsaw piece into a hole that it doesn’t belong in. I would say I feel broken, and irreversibly changed, but I’m not sure that’s entirely true. I have changed. My perspective has changed, and to some extent my life values have, too. Cancer has ripped a hole in my life, and caused me to forget to live for a couple of years. It makes living hard at times, even now, because it feels like I’ve ‘checked out’ for the last few years, and in that time things have changed and people have moved on – it’s impossible to jump straight back in feet first.

I had a life before cancer, and I’m not going to get that back. I don’t want to get it back. But if I had a life before cancer, I can have a life after cancer, too. I’ve just got to keep taking steps forward, no matter how hard it gets. I’ve just got to keep on keeping on

Also posted on Huffington Post.

Cancer Takes Another Life

I’ve just heard that Dr Kate Granger died yesterday, at the age of 34.

I first ‘spoke’ to Kate over twitter a couple of months before Mum died. I’d seen her floating about on Twitter a while before then. I knew she was being treated in Leeds, and had asked Mum if she knew her (a high probability given that there were just 3 consultants in Mum’s palliative medicine team). Mum said that she’d seen her around, fundraising and things… or something along those lines.

Kate contacted me last April, after I started blogging about Mum’s illness, saying:

Im so sorry to hear about your Mum. She helped me through some very tough times…

In fact Im really missing her support now & I almost feel disloyal for seeing another pall care cons.

I had no idea Mum had treated her and when I mentioned it to Mum, Mum brought up the whole doctor-patient confidentiality thing which I’d forgotten… I later read Kate’s books and, though Mum wasn’t mentioned by name, with the knowledge that Mum was her consultant at times, I could sometimes see the Mum I knew coming through.

She then contacted me again a week before Mum died:

Dear Naomi, reading your latest blog was heartbreaking… Just wanted to let you know Im thinking of you and your mum. K xxx

We had a short conversation. She asked me to pass on to Mum that she was still defying the odds and was in their thoughts. Mum wasn’t particularly responsive at the time, but I told her and she smiled.

After Mum died, she messaged me again:

Oh I’m so sorry to hear that Naomi. Thank you so much for letting me know. She was a fab woman your Mum. Never forget that. Huge hugs & love to you & your family xxx

And then, later on:

Have been with my girlfriends today – not something we manage as often as we should. We were planning our Christmas get together – an unexpected event for me – but found myself stopping & thinking about you & your Mum. How tough Christmas will be… Your blog is absolutely beautiful. Thank you for speaking out about dying & grieving so eloquently. Thoughts are with you xxx

I know that Kate caused waves in some of the work she did. I know that some medics weren’t always happy with the way she tweeted things, or what she wrote. I also know she raised a huge amount of money for charity, got people talking about death and end of life care, and highlighted the importance of clinicians introducing themselves (#hellomynameis).

Hearing of her death is upsetting. For me, it is another link to Mum which has been lost. But from a wider perspective – it’s another life lost to cancer. Another person who’s life has been cut short due to this horrible illness. Another grieving family who are left to make sense of the nonsensical. I hope that they can take comfort in the fact that Kate was loved by many, and that she made a difference.

Dad: Picking Up Where We Left Off?

I was in a well-known hardware shop last week and I saw a girl who was probably about 3 or 4, being pushed around on one of those trolleys you only get in big hardware shops (they’re sort of like a platform with a handle, rather than your standard shopping trolley) by her Dad. It prompted such a clear memory of doing the same with my Dad… only instead of it being one child it would normally have been two or three. Saturday or Sunday afternoons, being pushed on one of these trolleys by my Dad, feeling like I was on Aladdin’s carpet. Everything was right in the world, I was safe with my Dad buying something exciting like wood and then we’d go home and have tea, have a bath, and go to bed listening to The Archers play on the radio in the next room.

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My relationship with my Dad has got buried somewhere in Mum’s illness and death. It got put on pause on February 8th 2014 when he text me to find out where I was (I was living at uni at the time), came and picked me up, and told me in the car that my Mum’s cancer had returned and that there was no cure. I don’t know how he ever found the words to tell me, and then to tell Mum’s’ family and friends, but he did.

Mum became ill for the first time when I was 18. Dad brought my brothers and me into the kitchen and told us about Mum’s cancer. He told us Mum had caught it early and that we shouldn’t be overly worried. We cried and hugged each other, but we were calm. I went to work that afternoon. Mum bounced back from cancer round one, and wasn’t diagnosed with terminal cancer until around 9 months later.

Once Mum was diagnosed as terminal, Dad would drive me backwards and forwards to uni, clocking up miles and miles, allowing me to continue my education as well as spending valuable time with Mum. It was Dad who learned all the biology behind Mum’s condition, Dad who learned how to care for her at every step, and Dad who became fluent in doctor-speak. It was Dad who managed all of the visitors coming in and out of our house, Dad who spent hours every day on the phone to people updating them on Mum’s condition, Dad who slept downstairs next to Mum, there for her night and day. It was Dad who was next to Mum when she died, Dad who really was there ‘til death do us part’, Dad who had to ring the GP, the coroner, and anyone else you ring when someone dies. It was Dad who rang me when Mum died, Dad who spoke to me as my world fell apart in a university stairwell, Dad who gave me a hug when I walked through the door later that day.

It’s Dad who’s left in a big house, in a small village, with three offspring and no wife.

When Mum was ill, Dad and I spoke about it a lot. At the beginning of Mum’s illness, Dad asked me to explain a few bits or bobs using my A-Level biology knowledge. As Mum’s illness progressed, Dad and I would spend half an hour in the car together between uni and home at least twice a week, which was a lot of time for talking. We would talk about Mum’s symptoms, her level of care, sometimes about what life would be like without her. We rarely talked about things that weren’t in some way related to Mum.

Mum and Dad had so many plans and so much they were looking forward to, together. Without Mum, Dad’s lost more than his ‘other half’: he’s lost his best friend, partner in crime, and confidante. They had plans to travel, to do charity work, perhaps to foster after we’d all grown up and moved out. They had other plans, ideas, hopes and dreams that I know nothing about.

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As for Dad and me, I’ve got to learn to become a daughter again. Our relationship paused two years ago, and in that time I’ve changed in so many ways and so has he. I’ve had to grow up quickly in a lot of ways, but in other ways I’ve got stuck in time. I’ve also not moved away from home in the same way as many of my peers. I’ve moved away from home physically, but I’ve got very used to going backwards and forwards on a regular basis and contacting my family multiple times a day; something which the majority of my peers definitely do not do.

Dad and I have had to start navigating this whole Dad-daughter-motherless-grief thing. He’s my Dad… but I don’t have a Mum anymore, so to some extent he’s been plonked in the role of Mum-and-Dad combined. Things I used to go to Mum for, I now either have to find a close female friend, or go to Dad. He’s got to do things he didn’t used to take sole responsibility for like remember what we have for birthday teas, or buy the odd bit of clothing.

There are times when it’s been really, really hard. Dad has never shied away from challenging me and my decisions, and as much as I love that and respect it, it can be hard when we disagree on something and I don’t have another parent to run to. Without another parent to mediate, it can then take a little while longer than it might have done to resolve anything like that. Admittedly, at times, I’ve felt like I’ve had to be a ‘Mum’ to my brothers. My Dad told me when Mum died that we should never let anyone tell us what Mum ‘would have wanted’, and that I was not my Mum, and I was not my brother’s Mum. But that can be hard; I remember things Mum did for me, like buying my favourite foods during revision periods, and I want to do the same for my brothers (this particular one resulted in a few kilos of milk bottle sweets arriving at my Dad’s house).

Working out how we all relate to each other as a family is just one more difficulty in the mountain of change that occurs when someone dies. I know that we will get there and I’m really glad we’re close enough to work through these things together.

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