Author: Naomi

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.

Not Like The Movies

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Nobody tells you that terminal cancer is not like in the movies.

You can’t put your life on hold and all gather around the sick person. It doesn’t work like that. You have to carry on with life, living each day as well as you can. Never able to fully forget or let go; your hand permanently attached to your phone, waiting for the next text or phone call.

Nobody mentions that cancer isn’t linear. You can spend a weekend with an unresponsive parent; coming to terms with saying goodbye… and then they come back to life. Nobody can tell you how long they’ve got left. You always have to be prepared.

Nobody warns you that you will lose friends. Because transitioning between real life and hospital life becomes too hard. Hospital feels clinical and safe and moving back out into the world is overwhelming. They don’t warn you that you will be so tired from traveling back and forth, from holding yourself together and being there for everyone else that you forget to reply to texts. Friends become strangers.

Nobody talks about how traumatic it is. The nights spent curled up, crying, wondering if life will ever settle again. They don’t talk about how the dying person tries to leave you with bits of them. How they plan 30 years into your future whilst you’re struggling to accept the now. They don’t talk about what happens after death; when the person is gone and you have to develop a new normal.

Nobody can ever understand what it’s like, unless they’ve been through it. How your whole life can be on hold but also moving so fast. How you learn to play a part, act out a role, paint the right picture. They can never understand how much it physically and emotionally hurts, or how your whole body can cry.

Nobody warns you that it’s not like the movies. You can’t switch off when you start crying. You can’t pause it when it gets too difficult. There are no balloons, no presents from big companies, no meetings with famous people. There is just you, your family, your friends, and your loved one attempting to make some sense of a situation which has no meaning. Working together to find some peace, acceptance, and the courage to keep going.

Deceiving ‘wellness’

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I posted this picture on Facebook last week. Everyone keeps commenting on how well my Mum looks. How she’s amazing. How strong we all are.

My Mum is amazing. She was comatose a few weeks ago and we thought she’d die. She very nearly did. Since then she’s regained some mobility, knitted two baby cardigans (ready for if my brothers and I ever have kids), proof-read two essays for me, been to the cinema a few times, shared lots of laughter, given me hugs, and shared many happy moments with friends and family.

But Mum is by no means ‘well’. She’s a heck of a lot better than she was when she was in hospital, but she’s not well. She has terminal cancer; it has invaded her body and stolen her health. When you look at the pictures and see us smiling together, we are happy and we are enjoying the time we have together, yes, but pictures can be deceiving.

Mum and I spent a lovely day together on Friday , we were happy and enjoying ourselves. However, what you don’t see is that she’s sleeping for 15+ hours a day. You didn’t see her walking into the building with her stick (she’s come so far – a few weeks ago it would have been a frame or wheelchair). You also didn’t see her not finish her meal, or notice how much weight she’s lost. You didn’t hear me ring up before the event to check access requirements – there has to be a disabled toilet and can’t be too many stairs. A year ago my Mum was climbing hills with us in the Dales, that’s just a few examples of how cancer can affect a previously fit, healthy, woman.

You didn’t see me worrying the day before because I hadn’t seen Mum in a few weeks and wasn’t sure where her health would be. You didn’t hear my Dad and I discussing life, death and health all the way back to uni. You didn’t see me crying on Saturday night, because I found similar pictures of us from 14 months ago and the difference shocked me.

I love my Mum and I’m so glad she’s still with us. She’s amazing and she’s come so far. Compared to a few weeks ago, she really is ‘well’. But please don’t assume that she’s better, or recovered. She’s not going to recover and she’s not going to get better. She is dying, however much that’s a taboo word and however much people don’t want to talk about it. Don’t hold out false hope, because it will only be harder when she goes downhill again.

Why am I blogging this?

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I was going to wait until after essay hand-ins before I started blogging about this, but as it’s Dying Matters Awareness Week, (check out #YODO on Twitter) now seems like a good time.

My Mum is awesome. She’s brought up three kids (and I reckon we could have turned out worse!), had an amazing career in palliative medicine, volunteered for the church and sold Fairtrade for years, taken part in various exercise-related things, and still found time to attend a gossip/book club and spend time with her friends.

Unfortunately, in February 2014, she was diagnosed with terminal cancer. It’s a fairly crappy situation, but we’re lucky to have some amazing family and friends around us to support us, so it could be a lot worse!

Why do I want to start blogging about this? Well, considering that cancer is something which will affect most people at some point in their lives – it’s still a bit of a swear word. We don’t talk about it! I don’t know if that’s because people think that they’ll contract it if they talk about it (don’t worry – that’s not how it works), or they just don’t know what to say, or quite what. It’s in movies/films a fair bit but in all honesty I think I’ve only ever seen one that comes close to explaining what cancer is really like.

As a young person living with a parent who has a terminal diagnosis, I’ve discovered a fairly considerable hole in the people-dying-support-system stuff. There is a lot of support out there for children with a close family member who is dying; there is a fair amount of support for spouses and for parents of people who are dying. But not really anything for those of us who are adults-but-not-really, i.e. those of us who are over 18, but still haven’t quite worked out what a mortgage is and see cereal as an appropriate dinner (fairly sure this lasts until you’re around 25, correct me if I’m wrong).

This is incredibly isolating. I’m really lucky to have two brothers and a Dad who I can chat to, a great uni welfare team (and a very understanding academic department), and some wonderful friends. Furthermore, because of Mum’s previous job, a number of our family friends understand the whole palliative medicine thing a lot better than I ever will. But unless you’ve actually been through it, or are going through it, you don’t quite ‘get’ it. Don’t get me wrong, I’m immensely grateful for all the people we have around us and I wouldn’t be without them, but sometimes there’s no substitute for someone saying ‘I get it’ and knowing that they really do.

So I’m writing this for a few reasons. Firstly, I’m hoping it will help me process things, I find writing very cathartic at times. But the real reason I want to write this is to reach out to others in a similar position to me. Those of us who are attempting to work out life whilst trying to understand death. Because I don’t believe I’m the only one in this position.

Just Be.

~ Naomi ~ Leave a comment

feet One of my jobs involves looking after two lovely young boys. They’re Star Wars, mad, fantastic at Lego and have an incredible amount of energy. They’re loving, have huge imaginations and do impressive impressions of minions.

Every single day, they teach me something new whether that be facts about planets and dinosaurs, intricate Ninjago plotlines or important life skills such as how to have patience!

On Tuesday, I was sat in the garden with them. We’d been in the park all morning and had then come home to have a picnic outside. We were sat out on the grass, in the sun, eating lunch, as you do – and I began to feel stressed. Physically stressed. There was absolutely no reason to feel this way. Yes, one of the boys often takes twice as long to eat as most snails probably do, but that in itself is not a stressful situation (unless you need to get somewhere quickly and you’re waiting for him to finish).

It occurred to be that there is very rarely a moment in my life where I stop. For most of my life, I constantly have to be somewhere, do something and it usually has to happen now (if not before). Some of this is when I have a lecture to go to and I’ve overslept, but often it’s a need I impose on myself because I feel that I can always do more and try harder. And that is probably why I felt stressed. It’s almost my bodies’ natural reaction that if I’m not doing anything for 5 minutes or longer then I’m wasting time and I must getbusyquickly or everythingwillfallapartargh!

I don’t think this is an ideal way to live. Yes, I like being busy and yes, I like getting involved with lots of different things. But there is something about stopping, looking at the world around you and noticing things. Noticing how the sun feels on your skin, that there are three bees in that flowerbed, that the air is beginning to smell like spring. Just appreciating where you are in that moment and feeling content.

Some might call it mindfulness, others might refer to it as meditation. Some do it through yoga or pilates, others will go for a bike ride. But I feel like it’s important to stop every once in a while, take in your surroundings, and just be.

Letters don’t define your life.

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As most people who have Twitter will know, yesterday was A-Level results day. The day when 18 years olds anxiously refresh UCAS and shake their way into school to collect brown envelopes containing their fate. Have they got the letters needed to get them to their choice of university? Or are they destined to a year of ‘gap-yah-ing’ it up and working out what to do with their lives?

Either way, those 3 (or more) letters do not define you as a ‘success’ or a ‘failure’ – something which is hard to trust or believe, especially at the age of 18 when you’re the only one of your friends to have dropped a grade.

I’m 20 now, it’s two years since I got my results, but I can still remember it clearly. I received grades which anybody would be pleased to open. They got me to the university that I wanted to attend and would not hold me back from anything I wanted to do. But I wasn’t happy. Why? They weren’t a perfect score. I went to a school where most people were aiming for an A or A* in most subjects. The stress of repeated testing and constant pressure had really taken it’s toll on me. I always thought of myself as ‘academic’ (however you define that) but on the receipt of those results I was lost.

In the last couple of years, I have taken steps to define myself by something other than my grades. Volunteering in general, but particularly Team v (a volunteering program training the next generation of social leaders) is something which has really helped me with this. It was the first time in my memory that I was learning by doing, not by textbook, and more importantly – learning because I wanted to, not because I felt I had to. If I made a mistake it was fine, that was simply part of the learning process. At interview they didn’t want to know my grades, they just wanted passion and potential. I couldn’t tell you the grades of a single one of my Team v friends but I could rattle off grades of my school friends at the drop of a hat.

I have made huge steps in learning that there is life outside grades and that the person you are, and more importantly your own personal happiness, are much more valuable then any letter defining your ability to recite reactions will ever be.

It’s a long road and it’s a hard thing to accept when we are brought up in a society where newspapers tell us that ‘exams are getting easier’ and ‘unemployment is rising’. Admittedly – last night I felt like that 18 year old “failure” again. But it’s so important to remember – your grades are not you. Do not let letters define your life.

Check out this video for more inspiration.

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Faith

~ Naomi ~ Leave a comment

Over the last couple of months, I have been losing my faith. I don’t have a religious faith, but I believe in good people; in the ability of good people to change things. Due to various things that have been going on in my life, I have been struggling to keep believing this. I’ve had a lot to work through and it’s taken my head away from always being where it needs to be.

The moment I realised how bad this had got was when I was stood in a room with a bunch of amazing young people doing awesome things in their communities and I just couldn’t feel ‘it’. Don’t ask me what ‘it’ is, because I don’t know. But I didn’t have it.

Volunteering is something I have built my life and my identity up around. It has been such a major part of my teenage years, the time I’ve been developing who I am, what I’m doing, what’s made me, ‘me’. Cue, a bit of an identity crisis!

Long story short, after a lot of fumbling around in the dark, trying to work out what on earth is going on, I’m still not entirely sure. However, I have realised that it is down to me to make my way in life. It is up to me to work these things out and there is as much time as I need. Nothing and nobody is going to ‘save me’ or ‘fix’ anything. It is not their responsibility, it is mine. Yes, I can use all my resources but at the end of the day, I have to work this thing out, whatever it is. I will keep volunteering, I will keep studying and working and I will get out of this.

Over the past few weeks, I’ve been child minding again; one four year old, one five year old. They are gorgeous children, very well behaved. They have cheeky smiles and giggle at silly things. They hold my hand when we cross the road and bury their heads in me when they’re scared.

Today, the four year old handed me a daisy which was ‘for me’. For now, that’s all I need

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A Stick.

~ Naomi ~ Leave a comment

This weekend we took 20 six to eight year old boys on a Beaver Scout sleepover. The setting was fabulous. There was a log cabin in the middle of a wood, a place for the Scouts to camp, a wooden play area and a rustic, open church. We had gorgeous weather, the air was crisp, there wasn’t a raindrop in site and the orange leaves crunched underfoot.

After lunch, we let the boys go. They ran outside, jumped in the leaves, rolled around on the floor, and did tarzan jumps with a piece of rope. A number of them found sticks and spend ages hitting trees. Some of the sticks were drum sticks, others were lightsabers, some were fencing poles, others were a particularly special object. Their imagination knew no bounds.

Later that evening, they were all gathered around the campfire, singing songs, joining in with the older children and generally having a good time. There wasn’t a face without a smile. Once we’d got back that evening and settled them down, nearly every child slept through the entire night, not waking until 7am the next morning (virtually unheard of for a six year old!)

Over the entire weekend, no child had access to a phone, a computer, a TV or any other form of screen. Not once, over the entire weekend did a single child ask me for any of these items. Nor did I ever hear the phrase ‘I’m bored’. No child complained that we ‘made them go outside’, in fact, most of them complained when they had to come in.

On Saturday, I asked one boy what he’d been doing the morning before he came. The response I got was ‘playing on my DS’. Once we let that child out of the building, he was off like a shot, running around and enjoying the fresh air. The next day, he listed all the many electronic items he owned. Once again, as soon as we opened the door, he was running around and jumping in the leaves. But I bet when he got home, he was straight back in front of a screen.

Kids were born to be outside. They were made to run and jump. They bounce. They need fresh air and the ability to be free and run off their limitless energy. They don’t want to be cooped up indoors.

Parents seem fearful of taking children outside. ‘What if they get cold?’ ‘What if someone steals them?’ ‘What if they get run over?’. I’m not saying these aren’t valid questions, but there are solutions to these problems. Many parents may claim they don’t have time, they’re busy, or they’re just too stressed. But I can assure you; an hour jumping in leaves with your child will lower your stress levels no end.

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Involving Young People

~ Naomi ~ 1 Comment

Involving young people is something that I get asked about a lot. People often want to know how they can involve young people in things and get them to have their say. However, sadly, although I have found that some of these people do genuinely want feedback, opinions and ideas from young people, many do not. They say that they want inclusion and that young people are ‘the future’ and ‘the decisions are going to effect them’and all of the other cliche lines that get thrown around all the time. However, how much they actually believe in these statements I’m not sure.

As young people, we are a hassle and we are annoying. This is because, we want things done, we want them done properly and we want them done quickly. We want to see a change. We have energy, and drive, but we need you to help us channel them into something productive. You can’t leave us with false promises because we will remember and we will tell you when you haven’t delivered. All of these things are annoying because it means that you actually have to do something about the issues rather then gathering data, promising changes and leaving the paperwork on a desk to gather dust.

We are also up to date with the latest technologies, generally speaking, and will expect you to be to. Facebook and Twitter are everyday communication tools. You will have to learn to use these sites, if you want to get young people involved. However much you may hate these sites or disagree with them, sometimes you just have to do something you don’t like.

We want to be listened to. Do not invite us to come and sit at one of your meetings to ‘give a young person’s perspective’ and then ignore everything we have to say. Or make us feel unwelcome. What good does that do?! In fact, it probably does more harm then good, as it’s likely to put barriers up between the two age groups rather than achieving anything. If you want a young person present at your meetings, you need to involve them, and you need to seriously listen and take on board what they have to say. Do not discount their ideas or see them as useless without giving them as much thought as you’d give to any ideas submitted by other people around the table. Furthermore, don’t have a discussion group focussing on how to get young people involved, without a young person featuring as part of the group! We are experts in knowing how young people communicate and what issues they’re facing, because we are young people. So it’s daft trying to guess from an adult perspective when you can just come and ask one of us.

Please don’t treat us like aliens. We are not strange creatures from outer space with unidentified flying hormones floating around (I know, I know, this may be a shock). We are humans too(!) and we want to feel like we’re part of your group. We want to feel like one of you, not like a zoo animal put out for observation. Treat us as one of your own, but also, remember that we are only young and sometimes this may affect our judgements on things, and in some instances we may need a bit of care and understanding as certain issues may affect us more then they affect you.

Finally, help with travel costs can go a long way (unintentional pun!). If you can cover our travel costs or offer us a lift home, it will make the world of difference and help to keep us involved. We are skint, as a rule, and travel is normally very expensive. So something that might not seem like much to you will be a massive help to us!

So, to summarise,to involve young people, you need to listen to what we have to say. When I say listen, I don’t mean in one ear and out the other listening, I mean properly listening. You have to treat us with respect (this of course does go two ways), and take us as seriously as anyone else. Once we feel that we’re being listened to, and that something is actually being done about issues that effect us, you will start to see change! One thing young people do have more of then adults, is time. So, if we want a change to occur, and you want change to occur, with the right guidance and support, young people will help you move mountains.

A Brief Part Of Life.

~ Naomi ~ 1 Comment

Last week, the young boy who inspired me to start Escape The Frame (https://www.facebook.com/EscapeTheFrame) left my Beaver group to move to Cubs. It’s a necessary, but difficult transition. I think I found it more difficult then he did!

Looking back, it’s touching to see how much he’s grown and developed in the last year. A boy who used to hide under tables and refuse to join in, looked up at me with excited eyes and told me how much he was looking forward to going to Cubs. He then assured me that he had enjoyed Beavers and said thank you he’d had a good time. He looked me in the eyes as he said this.

I’ve loved working with him for the last year. It’s been challenging at times, there have been good evenings and bad evenings, but it’s great, now, to see him being so confident. I’ll miss him asking me for my camera every week and coming to sit on my knee but he’s growing up and moving on to bigger things now. (I have been informed that his uncle bought him a camera for Christmas, so I’m expecting to be invited to one of his showcases one day!)

He’s been a major part of my life for the past year or so. If I’ve been feeling rubbish, sometimes he’ll come out with something that’ll brighten me up. I’ve felt needed and wanted and have known that I’ve been making a difference. I hope he’s felt comfortable in my presence and I hope he will continue to grow and thrive. I don’t think that I will ever forget him or his smile. I doubt he’ll remember me in a few years, but you never know.

It’s amazing how people’s paths can cross for the briefest amount of time, yet they can make such an impact on each others lives… I think that’s a really big part of what volunteering’s all about.