terminal illness

Dad: Picking Up Where We Left Off?

~ Naomi ~ 3 Comments

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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Father’s Day

~ Naomi ~ Leave a comment

Mother’s Day was hard… that was to be expected. But Father’s Day? I didn’t think that would really be of any significance. Turns out I was wrong.

I was just sort of going about my day earlier – standard Sunday stuff; cycle to a shop, attempt food shopping, feel proud for actually buying some salad and not adding to my ever expending washi tape collection etc. I was feeling a little more anxious than usual but wasn’t really sure why.

On my cycle home, I realised it was a Father’s Day thing. It’s not uncom218 (2016_04_23 16_52_32 UTC)memon that I dream about Dad dying, or Dad having cancer. For a long time after Mum was diagnosed I panicked at every text or call, terrified that someone else close to me was ill or had died. I’ve got a bit better at that now which is handy because I don’t think it’s healthy to panic innumerable times a day. The dreams still pop up every now and again but I don’t normally worry about it during the day any more, apart from today.

It feels odd being a daughter with only one parent. It feels odd having a Dad without a Mum. My Dad is great in pretty much every way, but it’s weird having a Father’s Day without a mother. I don’t really know what to do or say. We focussed so much on Mum while she was ill, I can remember every Mother’s Day, but I don’t remember Father’s Days, I don’t remember what we used to do…

Today has prompted lots of anxiety, a few tears, and the majority of the day spent buried under blankets, crocheting and watching various comedy programs. It caught me by surprise. I’m not alone in it, though. I’m in a Facebook group with other young people who have, or had, a terminally ill family member. I posted in there earlier today and a number of people responded with similar feelings.

Grief is a funny thing and there’s no rule book for it, no logic, no handy flow chart to guide you through. You just have to take each day as it comes, and sometimes that means spending the day buried under yarn, engrossed in TV, and I think that’s okay.

 

 

Where’s the “good” in “goodbye”?

~ Naomi ~ Leave a comment

I was going through old cards and letters the other day as I began to put things up in my room (I’ve been very creative with command hooks. I should probably have bought shares in command hooks…). I found the last birthday card that Mum ever wrote for me (which made me cry). I also found the card my family wrote for me when I first went to uni, which has found it’s way onto my wall.

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The more I read it, the more I think it’s excellent advice for life. (I wish you could FaceTime dead people, though, but Mum was cremated and I don’t think ashes can talk).

I was wandering round a shop today when ‘No Good in Goodbye‘ came on. As it came on I was scrolling through my phone and people from my uni course began to post their results.

Admittedly I got a bit of a ‘pang’ and my mind began to race about what could have/should have/might have been.

It feels stupid because I feel incredibly lucky to be where I am right now and I’m more content with life than I have been in a long time. If I’d have stayed at uni I would most likely have become even more unwell and probably wouldn’t have finished. I wouldn’t have met some of the wonderful people I now have in my life and would have missed out on some fantastic opportunities that I’ve been granted. I probably wouln’t be blogging for Blurt, or have the job I have now (which is basically my dream job).

I’m struggling to match the ‘me’ that I am, with the ‘me’ I’ve always thought I ‘should’ be. I’ve had a few conversations in the past week or so when people have been really surprised that I did Art up to AS level and DT to A2 level. They’re really surprised that I have a bit of a creative streak (something I’m debating blogging about more…). I guess I sort of abandoned creative me, and tried to become academic. There’s nothing wrong with being academic, but I don’t think it’s really ‘me’. I’m actually not a huge fan of reading and writing, I’d much prefer to play with paint, talk to people, or design a website. I like doing and being rather than sitting and reading. I like learning through doing or talking to people.

Uni was so tied up in Mum’s illness. I didn’t notice it at the time. I didn’t really think I was any different from my peers. When I’ve gone back through cards, letters and photos, though, it’s become increasingly clear how much Mum being ill really did affect it. I can see my social life dropping off. I can see the distraction setting in. I can match photos and cards to points in Mum’s illness. We tried to keep everything as ‘normal’ as possible, but looking back  I can see how far from ‘normal’ things fell.

There is no ‘good’ in ‘goodbye’ and as each day goes by, I miss Mum more and more. There’s more I want to tell her, or ask her advice on, or just chat to her about. But maybe there is a bit of good in the bad? Maybe Mum’s illness and death and my leaving uni have forced me to reassess who I am and what I’m doing with my life, and maybe that’s no bad thing…

Silence is Noisy

~ Naomi ~ 2 Comments

We’ve passed the seven month mark. Seven months since Mum died. I’m not sure when I’ll stop counting these milestones. Maybe it’ll happen when things get easier. I’m not sure it’s getting any easier yet, in some ways it’s getting harder. The day Mum died was hard, but every day since, there’s been a nagging voice in my head saying: “The longer she’s dead, the more she misses.”

I moved house again last week. A few months ago I had to move out of halls very quickly due to taking a Leave of Absence from uni, so I lodged with someone for a couple of months. But last week I moved out, into a flat which I’m sharing with a friend. I’ve also got a new job – I’m still waiting for a start date, but it’s another life change. They’re both really positive life changes, but changes nonetheless.

My Dad has been incredibly helpful in all this, as have a couple of friends. They’ve helped me make decisions, taught me valuable life lessons, and in Dad’s case, helped me move everything I own from one house to another.

I have noticed Mum’s absence, though. When you get a new job, one of the first things you usually do is tell your parents. When moving house, your parents (with any luck!) provide a vehicle of some kind and some extra arms and legs for carrying things up and down stairs. Mums, in particular, are good at remembering things you forget (such as cleaning products – a quick trip to the shop now means we have the best-stocked cleaning cupboard in York, but it’s something I hadn’t factored into the big move).

There wasn’t really anything that she would have done that didn’t get done anyway. In fact, I can’t think of anything in particular that would have been her ‘job’. At one point I did consider she may have helped me buy some new work clothes, but then I remembered she used to practically pay people to take me shopping, so maybe not!

A lack of significant ‘role’ for her doesn’t mean I’ve felt her absence any less, though. I didn’t miss her too much during the actual house-move (another pair of hands would have been useful but we can blame my brother’s man-flu for that!), but I missed her that first night. I don’t know why I missed her then – even if she was alive she’d have been at her house, not mine – but I did.

Before Mum died, I never knew how much space an absence could take up. I didn’t realise how noisy silence could be. I don’t really know how to describe it, and perhaps it’s something you never really come across until someone close to you dies, but absence can seep into every aspect of your life and can grow at an alarming rate.

It goes deeper than a simple nothing. “Nothing” can easily be masked by white noise; the radio, TV, a trip with some friends, tasteful home furnishings, or a chat on the phone. “Nothing” is easy to cover up. But absence is deeper. No amount of noise can stifle it, no amount of talking can deplete it, no amount of looking-after-yourself, being sociable or distracting yourself can make it go away. It demands to be noticed.

Time is moving forward, life is changing, and good things are happening. None of it makes the absence disappear, and sometimes it makes the absence even more noticeable, but it’s also essential. My life can’t remain in 2015, it can’t get stuck in a time when Mum was still alive – it’s got to carry on, and that means that I’ve got to keep on doing what I can to live in the present.

Illness vs Death

~ Naomi ~ 4 Comments

People don’t realise that has horrible as Mum dying was, it’s her illness which is having such a huge effect on me at the moment.

It was seeing her slurring and seeing things on the walls, unable to eat or walk, and then getting lost in Leeds in the dark on a Friday night because I was so upset I didn’t look where I was going and before I knew it I was stuck somewhere not-so-safe. Before that I was so confident at being out and about but now if I’m out in the dark I am so anxious and it’s only made worse by noise.

It was seeing the woman I’ve always seen as so strong, capable and ‘big’ unable to even reach up to her face to scratch her cheek… having to feed her water through a sponge and wipe her face for her. Then seeing other women, who I’ve always seen as role models, crying. Leaving the room and crying. Turning away and crying. Breaking down unable to speak. Having to remain strong for them, because they needed it.

The last stages of her illness were hard, really hard… but it was the sudden deterioration 8 months prior to that which really changed everything. It was so sudden and so unexpected.

I miss my Mum a huge amount, and there is a lot to come to terms with, but it’s the illness I’m struggling to get past. I get images in my head and I can see them in front of me when I’m watching TV or walking in the street or whatever and they won’t go away. Sometimes it feels like I’m back there. I haven’t slept in my bedroom at Dad’s house since that week.

I don’t know how to deal with it or where to go with it. There are no answers or solutions. I don’t even remember it all properly (yet?) but it’s just always there.

10271626_747664941922103_6494238436515259520_nIt was seeing the woman I’ve always seen as so strong, capable and ‘big’ unable to even reach up to her face to scratch her cheek…

Submissions?

~ Naomi ~ Leave a comment

So, over the past few weeks I’ve been working on getting myself back and working out where on earth I am in life/the universe/everything (and also sleeping a lot).

Today I managed proper social contact, getting up on time, showering, clearing my desk and clearing my inboxes (not necessarily in that order), but today was definitely a ‘win’ day.

A few things have occurred to me recently and I wanted to get people’s opinions on them. I’ve had quite a lot of messages in recent times from people who have been/are in a similar situation to me. I’ve had all sorts of grand ideas and plans floating through my head, but the truth of it is, I’m not in the right head space to do any of that right at this moment.

One thing I was considering doing, is setting up a way for people to submit their stories (anonymously or not), and having a page on this blog where they’d all be held. Would anyone be up for that or interested in that?

Over time, once my degree is further/done and my head’s a little clearer, I potentially want to look at how we can promote conversations about terminal illness and about loved ones dying. I have a few ideas around it but they are literally just ideas at this stage and nothing more.

Anyway, I’ll leave it here, because I’ve got to head out and I’m sure this is long enough for today, but please let me know if submissions are something you’d be interested in reading and/or contributing 🙂

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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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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