terminal cancer

Mum Died Yesterday

~ Naomi ~ 11 Comments

Ever since I started writing about Mum’s illness, part of my brain must have known that I would have to write this post at some point, but it doesn’t make it any easier to write.

At lunchtime yesterday, Mum passed away. It was very quick and Dad was by her side.

Dad rang me at uni. Even though I knew as soon as I saw his name on my phone screen, and even though I’d known this was coming, it doesn’t make it any less of a surprise. Mum seemed a little better the night before – if not better, at least the same as the previous night, a stark difference from the rest of the week where she seemed to deteriorate noticeably every 24 hours.

A week or so ago I arranged for someone to contact a list of people who needed to know, and thankfully the whole system worked seamlessly. Within 5/10 minutes I had two welfare tutors in my room until a family friend came to take me home. My college have been amazing.

Yesterday afternoon, I walked into the lounge to see Mum for the last time. She was lying asleep on the bed. I put my hands under the duvet, found her hand, and held it, stroking her fingers like I did the night before. Holding the hand that held mine for the last 21 years. It was still warm. I put my head on the duvet and cried. Before I left, I stroked her hair and kissed her forehead just like she used to do for me whenever I was upset. It was cold.

Everything feels in slow motion today. I’m trying to remember the steps that people take each day in order to function. I keep catching myself sitting, or standing, thinking of nothing – but I’m doing okay.

I’m lucky to have an incredible bunch of people around me who are offering hugs, wise words and hot orange squash. I miss my Mum. Normally when something this upsetting happens, it’s her who I’d go to.

It has been a long 3 years since Mum was first diagnosed with cancer, and an even longer 18 months since she was diagnosed as terminal. We now have a long road ahead of us dealing with the grief that comes with Mum’s passing, but there’s no rush, and in some small way we can at least take comfort in the fact that Mum is no longer hurting. It’s time to begin to develop a new normal as a family of four.

Mummyyy

R.I.P. Mum. 24/09/62-23/10/15

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.

The Last Days of Life

~ Naomi ~ 1 Comment

Mum looks so small lying there in the big hospital bed in our lounge, surrounded by countless pillows and duvets to keep her frail frame from bruising on her mattress. Her skin has turned a shade that no foundation would ever match. Her hair is soft and greying – it never quite recovered from the chemo pumped through her body, destroying her hair, but apparently not the cancer. She rarely opens her eyes now, but still has some awareness of the conversations taking place around her. She has been peaceful most of the time, but now her lungs are fighting against her and her body tries to cough out something that doesn’t exist, rattling her from head to toe.

I wonder what it must be like for her 84-year-old father who’s fit enough to swim 40 lengths of the pool each week. Healthy enough to go on long, fast, country walks, to play table tennis and to carry all of his shopping uphill from Waitrose every few days. It’s so unnatural to watch your adult child fade away in front of your eyes and be able to do nothing but make sure that her blanket stays covering her legs. He sits by her side all day, every day, watching endless amounts of TV and doing crosswords in his newspaper.

How must it be for my Dad who’s bounced everything off my Mum for nearly 28 years? When they made those vows all those years ago, I bet they never imagined that ‘in sickness and in health’ would come to this. You can see their love through everything that he does. He cares for my Mum so sensitively. The strength he shows in holding the house together, managing visitors and medical staff, waking up next to Mum every day, preparing her medications and holding her hand, is unlike a strength I’ve seen anywhere before.

It must be strange for Mum. I can’t imagine knowing that I would never leave the house again, never go up to my bedroom again, or even into the kitchen again. She knows she’s dying, yet she receives visitors happily and joins in conversations when she can, however slurred her speech may be now. She faces the prospect of death with seemingly no fear, putting her faith in the religion she’s trusted all her life. I can’t imagine how it must feel to wonder which part of your body might fail on you next, to know that you might not live to the weekend and will never feel the sun on your skin again. Yet, she faces it with a dignity and grace that most of us can’t muster when faced with the prospect of a half-hour trip on a weird smelling bus, never mind much else.

I love my Mum with every little bit of my body; I know I do, because it hurts and aches at the moment. I want nothing more than for her to be up and about, never sitting down, like she has been for the majority of my life. There is a small part of me that still hasn’t given up hope on that one, the reality is, though, that I will never see my Mum stand unaided again, never mind run around the house, and she’s tired… we’re all tired. Despite that tiredness, though, every minute of conversation I have with her, every kiss she tries to give me, every time she opens her eyes for me, is special, because I don’t know how many more moments like that I’m going to get.

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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.

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Hurt, Scared, Sad.

~ Naomi ~ Leave a comment

When I was younger, if I was hurting, my Mum or Dad would kiss it until it was better.

If I was scared, they would tell me why it wasn’t scary and leave a light on because it would stop things from feeling so terrifying. At nighttime I would hear The Archers theme tune play from their room as I fell asleep.

If I was sad they would wrap me up in their arms. I might cry and shake but they would hug me until the world settled, or until I was too exhausted to be upset any longer.
 
 
As I got a bit older, I learned that Mum and Dad couldn’t fix everything that hurt. But they could be there to listen when things went wrong, to be ranted at, to console, to hug and to hold.

If I was scared we’d talk it over, we’d work it out, we’d make it not feel so scary any more.

If I was sad I’d go to Mum and when she hugged me things would somehow seem better.
 
 
Late into my teens and life had changed a lot. I knew Mum and Dad couldn’t fix everything that hurt. But they could still stroke my hair. I could still lie on Mum’s stomach and she could tell me things would work out. We could watch something funny together and eat some chocolate and the world would seem brighter.

If I was scared at night, even at 17, I would go into their bedroom and crawl into their bed. Sometimes Dad stayed and sometimes he’d leave, but I’d sleep next to Mum until morning.

Some mornings I’d feel so sad that facing the day felt too hard and Mum would come in, give me a hug and lay my clothes out for me. She’d go downstairs and make me a bowl of cornflakes with chopped up nuts while I got dressed. She’d help me go from sad to school-ready in the space of forty minutes. A hug and a ‘see you tonight’ giving me the strength to face anything that life threw at me.
 
 
Tonight I’m sad, I’m scared and I’m hurting. I can’t crawl into Mum and Dad’s bed because that bed no longer exists. Mum’s hospital bed resides in the lounge alongside Dad’s tower of mattresses. Her hugs no longer hold the strength they once did. Nobody can tell me it will be okay because it won’t be. We will develop a new okay, in time, but we will never go back to the okay I’ve known all my life. Nights aren’t as scary as they once were, but have become long and lonely. I listen to Radio 4 short stories until I become exhausted enough to sleep. Mum can’t make me breakfast – it’s my turn now to get her food and drink when she needs it, and I like doing that. It feels right, and at least I can do something. I tried watching something funny tonight, but a cancer thing came on in the middle and made me cry. I tried eating chocolate but it doesn’t taste right and I’m not hungry at all. I sit, wrapped in a blanket which feels like a hug, stuck to my chair. If I don’t move for a while then time stands still and I can just about breathe. It’s okay, it’s okay, it’s okay.

 

Mum is Very Poorly Now

~ Naomi ~ 5 Comments

Mum is very poorly now. I went home today and she’s much like she was in February the day before she went into a coma. At that point we thought she only had hours to live, but it’s been six months since then. Looking back on it, we think it was chemo that caused the sudden dip. This time, there seems to be no obvious, reversible cause, just disease progression. Mum’s bloods are all way out. She’s very sleepy and largely immobile, but thankfully not in any pain.

It’s been a weird weekend – I slept from Friday night until Sunday morning (a mixture of illness and exhaustion I think), then went home for the majority of today. Mum has deteriorated so quickly since I last saw her a week or so ago. It’s not particularly distressing, just very sad. On the plus side, I did manage to find out which Christmas cake we make, which Christmas cake we make for my granddad, and where the list of people we buy presents for it. I even found out which mincemeat recipe we use and I don’t even like mincemeat.

I don’t know what you’re supposed to asked your Mum when you might not be able to ask her something tomorrow, or the day after. I don’t know what you’re supposed to say. I know that even when she’s asleep she likes hearing us around her talking and laughing. I know that she can still show a bit of a smile. I know that she still likes weak juice through a straw. I know that she’s still warm enough to hold. I know that she still cares about us and loves us deeply.

This week I’m going to try and manage uni alongside going home most nights. Attempting to maintain some normality in an abnormal situation. I don’t know how it’s going to go… we’ll see.

I don’t really know what else there is to say. I guess death is all a part of life. I’m going to try and sleep before I have to face tomorrow.

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.

Thinking Out Loud

~ Naomi ~ Leave a comment

Pretty much all summer long I’ve been itching to move back to university; I’ve complained about the mess in the house, the lack of independence, the lack of cashpoint within fifteen minutes of the house… pretty much everything. I’ve made a home for myself in York, and the house where I grew up doesn’t feel like home anymore.

Somebody asked me last week if each time I said goodbye to my Mum I thought about whether or not it would be our last. The very quick answer to that question would be ‘no’. When Mum was first diagnosed, I did for a while, but not anymore. Can you imagine living like that for 18 months?! You’d drive yourself insane. Furthermore, any time I say goodbye to anyone it could be the last time I see them. Accidents happen all the time and we never know what life might decide to spring upon us. (It’s morbid, I know, but still true).

I think I’m struggling to accept Mum’s declining health, and I’ve got to the stage where I’m just running away from it. If I’m not at home, then Mum’s health stays where I last left it. If I’m not seeing her every day, her disease is halted in time. Without seeing her condition change, I can pretend that it doesn’t.

When I’m at home, I can blame the loneliness and isolation I often feel on living in a tiny village and not being able to drive, which limits opportunities to meet with friends. But back at uni, I’m confronted with the truth that the lonely ache I feel is for the Mum that I grew up with, and that pit in my stomach only grows if I think about the number of friends I’ve lost since Mum became more ill.

I long to be able to walk through the door and see Mum chatting away whilst unloading the dishwasher, or cleaning up after baking a cake. I have dreams where I’m walking around Tesco with her. I wish that I could go clothes shopping with her, and walk around various shops all day arguing about socks, or something equally ridiculous, and having ‘lunch’ at a coffee shop (it feels like cheating to say hot chocolate and a piece of cake count as lunch, but it was our thing, so who cares?). But I can’t do or see these things anymore, and I never will again.

After a busy morning on my first day back at uni, I sat down for a moment, and I cried. Rather than the stupid, sniffly, ‘I’m not really crying’ crying, though, I let myself go and just cried properly. Mum might not be dead, but I’m grieving right now and I’ve been grieving for a long time – grieving for the life and the Mum I once knew. The boundless energy and busy nature of Mum as I knew her when I was growing up could not be more different to the shadow of her that sits, sleeps and watches TV for most of the day nowadays.

The night before I left for uni this week, I said goodbye to Mum. She hugged me, but she is so weak and small now that it wasn’t like the hugs I’ve grown up with. I knew her arms were around me, but I barely felt it. The following morning I said goodbye again, and we had a perfectly ‘normal’ conversation, but she was still in bed (to be fair, it was half eight on a Saturday morning, but healthy Mum would have been up and about an hour or two before then).

These days I’ve gotten pretty good at fielding responses to Mum’s illness – I diplomatically answer everyone around me and aim to be positive and busy the majority of the time. When someone tells me that Mum’s illness isn’t fair, I shrug my shoulders and respond that life’s not fair. But I am angry. This disease is taking her life and our future with her and I can’t understand why it chose her. This cancer is not just taking her life, but it is affecting our family in ways that I’d never have imagined.

Anger is an important part of grief, but it’s not an emotion I find easy to cope with, especially when a lot of my anger these days is actually directed at cancer itself. I feel like this anger is useless, and won’t get me anywhere. I could let it sit and fester in me, but that would just destroy me. I have to turn it into something useful. So I channel it into the positive things I do everyday: I keep volunteering, keep campaigning, and keep trying to make the world a better place.

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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.

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