grieving

No Kiss Goodnight

~ Naomi ~ 2 Comments

This week, I feel like I’ve settled into more of a routine of going home each evening. We have an amazing family friend who is taking me home and bringing me back each night and honestly, I’m so grateful. It saves a lot of tackling public transport/walking to places etc. It’s tiring all this back and forth so she’s making the world of difference.

Each night I head in and Mum’s deteriorated further. It’s stopped hitting me so much, though, I’ve become used to seeing a smaller, weaker, mum. I’ve sort of become a bit immune to it as the week has gone on. I just feel very still and flat. There are the occasional things which trip me up and make me cry, but they’re unpredictable.

Mum didn’t even try and kiss me tonight. She’s lost any energy she had. She can’t even move herself within her bed. She’s got a driver in now, to try and manage her pain. When she tries to talk she says she’s tired, despite sleeping most of the day. I don’t know how long is left. I hope it’s not long, not because I don’t love her, but because we’ve already lost her. She wasn’t even hearing everything tonight. I don’t want her to be in pain. I don’t want her to suffer. I don’t want my family to have to suffer any more, because every day that this goes on is another day that they’re watching the shell of someone they love lie in a bed too big.

Baby Steps

~ Naomi ~ Leave a comment

This morning did not go as planned. I intended to get up early, go on a run, get back, shower, head to the college house to work for a few hours before heading home. What actually happened was that I woke up exhausted, went back to bed for a few hours, work up crying, feeling like somebody had literally drained all of the energy out of the bottom of my feet along with any joy or happiness I’ve ever had… and wanted to hide from the world. Every time I closed my eyes to go back to sleep I’d be greeted with a memory of Mum which only made me cry more.

It’s days like this where I need baby steps. I check my phone and it has a million messages and it’s so overwhelming I can’t look at it. One text I could cope with, six that I haven’t responded to and it feels like too much and I can’t open the folder. I really do appreciate people texting me, and as soon as I’ve had a few deep breathes and can access it, I love reading through the messages, but that’s how difficult things feel at the moment.

I head to my iPad where things are broken up a little more and spend half an hour or so browsing through the internet, then tackled my phone and turned to getting out of bed. I decided a run wasn’t happening today, then decided that actually we should prioritise eating over getting dressed or leaving the house, for now. So once that particular task was tackled I settled at my desk to begin the day.

It’s now half one and I’m still not dressed, but I’m on top of my inbox, I’ve sorted out some banking stuff that’s been bugging me (I’ve been too scared to check my bank because I’ve paid out a lot of stuff lately and had no idea if I’d been paid back etc.), I’ve done a few other bits and bobs, and they’re all achievements on a day like today.

The next step will be getting dressed, opening the curtains and making my bed. Yesterday I tackled the clearing of the desk and the hoovering, so at least my room feels safe and calm for now. Then I’ll try and do some printing for my dissertation. Soon I need to head to town; I’ve got a shopping list from Mum and then I’ll be meeting someone who can give me a lift home where I’ll spend a few hours before heading back here again tonight.

It’s exhausting this dying Mum business, but I need to try and keep up some normality, and I need to be with my Mum, so at the moment this is how it is.

Mum Is Dying

~ Naomi ~ Leave a comment

I haven’t written a proper blog in a little while. I haven’t really known where to start, to be honest. The words are all there in my head but trying to untangle them and form them into coherent sentences has proved difficult. I’ve sat down to write a few times, but each time I’ll write a paragraph, get distracted by something else and end up with a mess on a page that makes no sense to myself never mind an outsider.

Mum is dying.

This isn’t news to anyone who’s read my blog before, it’s not news to anyone in my life, particularly, I mean she’s been dying for 18 months… but now she’s actually dying. Her mobility has decreased, we’ve got district nurses coming into the house, daily. The zimmer frame has been discarded at one end of the room, and the wheelchair now transports her from bed to chair and back again, when she has enough strength for us to help her move from one position to another. Words don’t come as easily to her as they once did which is strange, because Mum’s always been such an intelligent, chatty, and funny person. She still cracks jokes now, using the last of her words to make us smile.

Each time I come home, I expect to walk into her being busy in the kitchen. I expect the kitchen to smell of some kind of cooking or baking. I expect Caro Emerald to be playing as she dances while filling the dishwasher. I expect the house to be full of energy and bustle; people rushing in and out, doing things and being busy.

Instead I came home yesterday to a quieter, calmer, house. I dropped my bags off and went into the lounge to be greeted by my brother sat at the end of Mum’s bed, calmly having a chat with her as she drifted in and out of sleep. Halfway through the conversation, she fumbled for the bed controls, dropping the remote, needing my brother to retrieve it for her before she could move the bed down to take the pressure off her bones, which now protrude from her skin in places that they didn’t used to.

I spent the afternoon talking to her, sometimes with her, as she lay there semi-conscious. I found out which Christmas cake she always bakes, and found the recipe book to go with it. I asked about which one we bake for my Granddad and where the list is of who we buy presents for. Christmas is coming soon, it will be upon us before we know it, and if Mum doesn’t have the strength to carry out our traditions then I’ll have to keep them up.

Before I left I gave her a hug. Hugs are adapted now, to allow her to stay lying down. I can still feel her warmth though and know that she is still my Mum. She urges me to continue with uni and asks about my dissertation. She’s proud of all three of us and I know that she loves us unconditionally and wants what’s best for us. She’s always attacked everything in her life with all the energy she has, and in doing so has set an example for us to work hard, do our best, and strive to reach our potential every step of the way, whatever life throw at us. Whenever I was struggling with school work, she would always say ‘Aim for the stars and you might hit the chimney top, aim for the chimney top you won’t clear the roof’, so that’s what I’m continuing to do in each area of my life.

I don’t know how long Mum has left. I know that she’s tired, that she’s been battling this illness for a long time and it’s not a nice position to be in. We’re lucky because we have an amazing network of friends around us who constantly offer lifts, food, hugs, and an ear. The number of texts and messages I receive, some from people I don’t even know, is a testament to how many lives Mum has reached and how loved she is.

Mum is peaceful and pain free at the moment, and that’s all I want for now. She is loved by so many. I wish that she could recover and bustle around the kitchen again, but I’m slowly accepting that life has changed now, and the Mum who was fit and healthy has gone. In her last few days, weeks, however long it is, I just want her to be pain free, peaceful and content, if that means that we have to keep laughing and talking around her as she sleeps, then that’s what we will do.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/mum-is-dying_b_8284316.html

Chatting About Funerals in the Car

~ Naomi ~ 1 Comment

Mum is dying. I know we’ve known this for a while… but it wasn’t so obvious at first. But now she’s dying, I can see it.

I’ve only been away for a week. I popped back home tonight for some tea (my brother had been to open day at our uni, it made sense) and the change in Mum in just a week is far too noticeable for my liking. Her energy levels are lower, she’s fading into the chair more…and needing to use the chair more to help her sit up. It might not sound much, but she was already so slow I didn’t think slower was possible, yet here we are.

She knows it too. Tonight has consisted of an extra request for a hug, a conversation about money, another unfinished meal. The green bowl permanently resides next to her chair now as episodes of nausea increase.

I hate this stupid disease. I often filter my blogs, try and put a positive spin on things, keep my head up. I am generally a positive person and those if you who know me will know that I always try and make the best out of a bad situation. I often doubt myself, but my Dad always tells me I’m stronger than I think.

Tonight it hurts, physically, and I can’t describe it properly because it’s unlike any other hurt I’ve felt before. It starts in your chest and spreads through your shoulders, your stomach and your legs. It clamps your throat shut and forces tears out of your eyes. It doesn’t let you ignore it, if you try it just gets stronger.

I don’t want my Mum to die. I want this horrible limbo to be over but I don’t want her to die. I want her to wake me up on a morning by stroking my hair and I want just one more strong hug. I can’t keep writing because I don’t know what else to say. I’m just sad.

Dear Friend, My Mum Has Terminal Cancer

~ Naomi ~ 1 Comment

This post has been a long time coming. It has involved texts and Facebook messages from friends about things they’ve learned over Mum’s illness, things they wish they knew at the start and things they wish they knew now. It has involved thinking right back to the beginning and trying to remember how far we’ve come. I have a number of friends who haven’t been able to deal with this situation… and I’ve lost them. But that’s a post for another day. For now, this one is finally here.

Dear Friend,

I’m sorry to have to tell you this but mum has been diagnosed with terminal cancer. I’m sorry to tell you in such a blunt way, but there really is no other way to say it, and as I’ve had to tell so many people, I’ve got used to just saying it, now.

Please don’t cry to me. I know it’s rubbish, I know it hurts and I know it’s scary, but I can’t cope with your grief about my situation on top of my own. Please find someone who you can speak to about this; a family member, a friend. I don’t mind who, but please don’t fall apart on me, and please don’t keep it all to yourself.

First and foremost, I need you to remember that you cannot take my pain away. You can’t erase my grief. You can’t cure my mum. No amount of beetroot juice or yoga is going to do that. It’s in our lives and it’s never going away. Maybe in a few weeks, or perhaps a few years, cancer will kill my mum. This is never going to get better – in fact it’s only going to get worse. You can’t fix my mum, and you certainly can’t stop me hurting. But you can definitely be a listening ear, a shoulder to cry on, or simply someone who makes me laugh and brings some happiness to my day.

Please don’t stop talking to me about normal things. I want to know about your significant other and why they’ve annoyed you. I want to know about your sister and how she did in her most recent exams. I want to know how last night’s party was. I want to know the good, the bad and the ugly; to chat like we’ve always done. I need this normality in my life! Don’t think that mum dying makes your problems ‘trivial’ or ‘stupid’, because they’re not. They matter to you, so they’re important, and I always want to know the important things in my friend’s lives.

Don’t feel that every single conversation you have with me has to include mum. That’s going to get very boring very quickly. I have a life outside of mum’s cancer. I volunteer, study, work, go out with my friends and even knit monkeys from time to time. Sometimes I just need a break from thinking about all that stuff. Sometimes I just want to be the normal, 21-year-old me. So unless mum’s been especially ill lately and you’re enquiring as to whether she’s feeling better, or there’s something specific you’d like to talk about, just wait for me to bring it up. If you really want to discuss it then feel free to ask me stuff, but ask me how I am before you ask me how mum is. The order of those two questions can make a big difference to how the conversation appears to me.

I’m sorry if I don’t always reply to your texts nowadays. My life gets busy. Mum has to go into hospital sometimes and there’s no signal there, then I often come home, help with tea and go straight to bed because being with a terminally ill parent is exhausting. Even when I’m at uni, I’m often catching up on work I’ve missed or trying to do all of my work during the week so I can go home on a weekend, and I just forget to check my phone. Sometimes I might read your message, but my head is so full of everything that I forget to reply. Please be patient with me.

Don’t stop texting, though. I love receiving messages and knowing that people care. Don’t feel you need to text me every second of every day – that would be weird and annoying. Just contact me as much as you always have done.

If I seem to be struggling, and you become worried, talk to me about it. Ask me who I’m speaking to and what support I’m getting. You could walk with me to the GP when I need to go and sit with me in the waiting room if you wanted. See if you can find a group or an organisation who might be able to offer me some advice, or help someone in my situation. Remember, there is no ‘right’ way to support me. There is no ‘right’ thing to say or do. I haven’t changed as a person. I’m still me! I just have a really crappy situation going on in the background.

Please don’t disappear from my life. I know this is hard. I know you don’t know what to say or how to act, but I’d much rather have you in my life saying stupid stuff and mumbling, than not in my life at all. There is no ‘right’ thing to say or do. That’s what makes this so difficult. So just be you, stay in contact, and don’t run and hide, because I’ll miss you.

Drop me a message if you’re ever worried or upset. Please ask me if you’re not sure whether something is appropriate. Please tell me if I’m upsetting you in any way or if I’ve changed and it’s worrying you. Just communicate.

Thank you,
Your friend.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/terminal-cancer_b_8079376.html

Featured: https://m-community.macmillan.org.uk/Places/Application/Content/714424?applicationId=31108&applicationType=blog

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.