Grief Doesn’t Wait For A Person To Die

Whilst walking to an appointment today, I was wondering why the ‘I need my mum [insert tears here]’ feelings had been stirring again over the last few days. Part of it is the state of my life right now. But then I realised that today marks four years since I found out that Mum had a terminal diagnosis.

One day. One conversation. One car journey. My life hasn’t been the same ever since.

‘Diagnosis day’ was a weird one. I was volunteering in Leeds (following a very early morning). Dad text me asking me where I was, which was weird, because I was at uni so he no longer ever needed to know where I was. He drove over, picked me up, and told me while he was driving. I looked out of the window. I didn’t want him to see me cry. We got home and didn’t talk about it. Mum and I took a selfie. I went back to uni later that afternoon.

My grief started that day.

It’s a difficult one to articulate. How can you grieve for a person who’s still there? How can you grieve for your old life, when nothing’s really changed (yet)? The only thing that’s changed is that you’ve received a new piece of information. Everything else is the same.

But you do start grieving. In and amongst all the oh-my-goodness-shock-confusion-trying-to-work-it-all-out, there’s grief. It’s been four years, but it’s something I’ve struggled to come to terms with. That is until I started listening to The Grief Cast podcast lately. Many episodes have people who describe their grief starting while their loved one was still alive. It’s helped me realise that it’s okay. It’s okay that my grief began that day. I’m not alone.

From the moment you find out that your loved one is dying, everything changes. I mean everything. The solid foundation of ‘Mum will always be there’ disappears from beneath your feet. You become more careless with money (can’t take it with you when you’re dead). Assignments feel pointless. Relationships develop new importance. Jobs can feel worthless. Sleep can go out of whack. Food can go a bit wonky. Every time your phone rings, you’re convinced that someone else you love is dying or has died. Your anxiety can skyrocket. You start crying at random objects. Everything changes.

You become a member of a club you never wanted to be in. Grief begins.

You grieve your old carefree life. You wish that the most important thing on your mind was still what to wear for a Friday night out. You begin to miss the person your loved one was, as you watch them fade away in front of your eyes. You watch your family change, too. Morphing into a different family from the one you grew up with, as everyone tries to work out how best to cope. You spend night after night mulling things over, crying, getting angry and bargaining with the unknown. Later on you begin to wish that your loved one would die. You can’t stand seeing them so unwell, and your life is on hold until the point of death. Then you feel guilty and angry at yourself for feeling that way. Grief is well and truly present.

We need to move away from the assumption that we can only grieve once a person is dead. We need to move away from the stereotype that grief is a whole load of crying for a while, then it’s finished and you move on. It’s damaging to have these stereotypes because it makes it so much harder when you do have to experience the reality of grief. It can also cause people to react to our grief in insensitive (and sometimes bizarre) ways.

Grief is ugly. Grief is painful. Grief is messy. Grief is unpredictable. Grief can come in waves. Grief can rear it’s ugly head unexpectedly. Grief doesn’t have a nice, neat, end point. Grief is a life-long experience that affects us from the moment it begins. And that beginning is the moment our life changes. Not necessarily the moment when person dies.

One of the couple of selfies I’ve found that we took that day.
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Grief, Two Years On

I can’t quite believe it’s been two years since Mum died. In some ways, her death feels like it happened yesterday. In many ways, it feels as though it happened a lifetime ago.

Is it getting easier? Maybe.

I’ve always believed that you don’t get over grief, you get along with it. You rub along with it as best you can. Two years on and I still hold this belief. I’m not over grief, I haven’t come through it, but I’m learning to live life alongside it.

I no longer burst into tears when I see a Mum-aged person chomping on a cheese straw. Or when I see a cancer-ridden-body making their way around the supermarket. The grief attacks are becoming further apart. There aren’t as many times that I pick up my phone to text or call Mum, before remembering I can’t.

But that doesn’t mean it’s gone away.

I still cried when I found out that Dad had donated one of her favourite Christmas cookbooks to a charity shop (thankfully I have a wonderful auntie who replaced it within a week – queue more tears!). I still sobbed when I had some significant health challenges recently and wanted nothing more than a Mum hug. I still struggled when faced with a stranger receiving a cancer diagnosis right in front of me.

Mum hasn’t disappeared from my life. She has become part of it.

She’s part of the Christmas cake I baked a few weeks ago. She’s part of the bread I’ve made the last few weeks. She’s part of the birthday food package delivered to my brother. I see her in the crunchy leaves – remembering walks we had and the time we played football one October half term. I hear her steady advice in my ear when I’m faced with horrible life challenges. I feel how proud she is, through the pride I feel for my brothers and all they are achieving.

She’s everywhere.

Life changed when Mum was diagnosed. In some ways, the five years since her original diagnosis have been the worst five years of my life. However, they’ve also been the best five years. I’ve become closer with my brothers. My life has been propelled in a completely different direction – but despite the agonising decisions at times, I firmly believe that it was the right thing. I’ve met some amazing people. I’ve inherited many Mum figures. My outlook on life has changed. I have fallen back in love with art. I’ve been through tears, sobs, sleepless nights, medications, therapy, major health challenges, jobs, houses, flatmates, long phone calls, dog walks, driving tests, exams, panic attacks, laughter… the list goes on.

I’ve learned what’s important. I’ve learned how much I love my family, but that they’re not always right. I’ve learned that family aren’t necessarily those you’re related to. I’ve learned that I am stronger than I ever imagined – however much I don’t believe it at times. I’ve learned that crying is okay. I’ve learned that people can be amazing. I’ve learned that some people are not amazing, and you have to let them go. I’ve learned that it’s okay to let people in. I’ve learned that every emotion is okay, you just have to learn how to manage them. I’ve learned that you have to do a job that makes you happy, even if it doesn’t pay as well as other jobs, or doesn’t live up to other’s expectations. And that’s only the start.

I don’t have anything profound to write to mark these two years. I can’t tell that grieving ever goes away. You probably don’t want to hear yet another ‘it gets better’ platitude, but I can tell you that it becomes cope-able-with. I can tell you that however you feel is absolutely okay. I can tell you that your grief is your own, to cope with as best you know how. As my Mum always said: be kind to yourself

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Two Years. Sleep well, Mum. ❤

 

A Huge Thank You

Yesterday was Mum’s birthday.

A year ago, we started fundraising for Martin House Children’s Hospice in Mum’s memory, as she used to work there.

I am delighted to say that a year on we have absolutely smashed the target (it doesn’t all show on Just Giving as some donations went straight to the hospice). The money was originally going on lighting, but due to planning changes we have had a bit of a change of plan. It’s now going towards a music, art, and animation suite which is so perfect.

Mum brought joy to many people’s lives and hopefully this room will bring joy to the lives of many young people on their families. Mum was also a saxophone (foghorn) player and loved music. We would often dance around the kitchen to various CDs and blast them out in the car whilst we sang along.

We want to say a HUGE thank you to everyone who has helped us to reach this target – and there have been a lot of you! It was a fun thing to do, and a lovely way to remember Mum, and now she can live on through this room and all that it will provide.

Mother’s Day Fundraising

Mother’s Day is next Sunday – last year we did some fundraising for Yorkshire Cancer research. This year we are continuing our fundraising for Martin House Children’s Hospice. Mum worked there for many years before later becoming a trustee. We are trying to raise £5000 to restore the lighting in the corridor of the children’s bedrooms which will not only brighten it up for them, and highlight the incredible artwork on the walls, but also reflects Mum’s light and bright personality.

This Mother’s Day we’re asking you to donate the cost of a card in memory of all the Mums who can’t share Mother’s Day with us this year.

To donate, please text ‘LOVM53’ followed by your donation amount to 70070 or visit our Just Giving page.

 

The Sound Of Grief

Mum was a bundle of energy. As I frequently say to people – I’m not sure I remember her ever really sitting down until she became ill. She was always moving, always on-the-go, always running from one place to another doing various activities.

Our house was always a busy one; three children, a handful of friends, a collection of musical instruments, a pet or three, and every now and again an extra ‘borrowed’ pet. It never was going to be the quietest of places.

If there wasn’t a hum of voices filling the house, there was music. Mum played the saxophone (foghorn) and was part of a band. My Dad and one of my brothers played the piano and we had a drum kit in the lounge. When people weren’t making their own music, the CD player was on in the kitchen – Mum often put Caro Emerald on and danced round the kitchen whilst cooking or baking. There would normally be music coming out of the lounge, too, and at least one bedroom.

When Mum first became ill, the house only became noisier. I had moved to uni by that point but would come home most weekends and whenever I did, there were visitors. I don’t think there were ever just five of us in the house. Mum’s friends from uni would visit, or some family would have travelled up North. At the very least there would be some friends from the village or a neighbouring town popping in.

A year after Mum was diagnosed as terminal, she ended up in a coma in hospital. At that point, she was silent, but her room wasn’t. You would imagine someone being in a coma in the middle of the room might result in a bit of a sombre atmosphere, but it really wasn’t. We would spend most of our time there with various combinations of family and friends. It was almost a happy atmosphere – people were sharing stories and memories. There was laughter. I remember tearing up at times, but on the whole I remember feeling like although we were separate from the world and time lost all meaning; laughter and smiles prevailed through it all.

Once Mum came home from hospital, the noise subsided. We still had visitors, people still came to see her – in fact I only remember a single day between her coma in February 2015, and her death in October 2015, when I had some time alone with her – there was always someone around. It was quieter, though. Visitors would sit in the lounge with Mum just talking, or with the TV on in the background. There were occasions when it was busier and louder, but on the whole I remember it being more still.

On the one day that I was alone with Mum, the silence was almost loud. Mum slept for most of the morning. There was nobody else in the house. It was still and so quiet. It no longer felt like my house.

I remember staying over at a friend’s one night, and in the morning we were woken to a clattering in the kitchen and the sound of general family life. Until that point I hadn’t realised how much my house had stopped sounding like a home.

When Mum died, the house was full of people. The church was full of people. There was hardly space to breathe at times. There were words, there was music, there were children running around, adults talking, people generally catching up and exchanging memories and condolences. People speak more softly when someone dies. I’m not really sure why, but they do.

Mum died in October, her funeral was November and then it was Christmas. Throughout all of this time I carried on living at uni. The house I grew up in wasn’t home any more. The sound of it was wrong. Life became quiet. Having too much noise put me on edge and made me feel horrible – grief sensitised me to sound and I just couldn’t deal with anywhere particularly busy or noisy.

I’ve well and truly moved out now, but each time I pull into Dad’s drive, I still expect to see Mum running around the kitchen or working in the office. The house doesn’t have the ‘right’ sound any more.

Mum had so much life, love, and passion in her. She lived every single day. She tried new things, loved her job, cared for each of us, had fun with her friends, and picked up various hobbies. She wasn’t quiet, and neither was her personality.

Grief is so loud yet so quiet at the same time. Slowly, slowly, I am able to listen to, and enjoy music again. I can have the TV and the radio a little louder. Some songs or sounds will still set me off. I’ll be trundling along and out of nowhere a song or a sound will hit me, my chest will explode, and I will cry and cry. That can often be a relief in a strange sort of way, though. Sometimes you really need to cry.

I’m not ‘there’ wherever ‘there’ is. I will never live another day without grief, but I am learning to live alongside it. It doesn’t go away, but it does get better. The ‘I can’t breathe’ moments become further apart. I’m able to listen to music again, I finished a book the other day for the first time in years, I can put the radio on, and at times I can play the music super loud in my car and have a good old sing-a-long.

One day, I will have my own kitchen, I will embarrass my family by cranking up the CD player (or whatever magical invention exists in the future) and singing along to whatever music takes my fancy. I will have a house that is a home. It will have its own sound. It will be full of love and light, just like Mum was.

This was originally written for Let’s Talk About Loss, a safe space to talk through taboos and address the reality of losing a parent when you are young.

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Please Don’t Limit Your Unity

Today is World Cancer Day (apparently we’re having all the awareness days this week!).

The hashtag for the day is #ActOfUnity.

I think it’s wonderful that people are coming together to stand in solidarity with cancer sufferers. Cancer is scary, cancer is a life-wrecker, cancer is, let’s be honest, a bit of a dick.

I struggle with days like this, because thoughts go round and round my head: ‘why did others recover?’, ‘why didn’t Mum?’, ‘why did this happen?’, ‘why isn’t she alive to say “I kicked cancer’s bum”’, ‘why did this happen’, ‘why, why, why’. Then I feel angry, frustrated, and go and look at puppies or something instead.

My plea, for this World Cancer Day, is that in your ‘unity’, you include friends, family, and carers. Not just those ‘actively’ affected, but also those who have had someone close to them die from cancer. In fact often, a few months after the person has died is the time when they need more support, because that’s when the busyness ends. When you’re not spending your life running between hospital/uni/work/home/sleep/appointments/everything, and then home/crematorium/funeral planning/funeral/family/uni/sleep, that’s when everything hits you. It doesn’t just hit you once, either, it hits you time and time again.

When Mum was diagnosed, I remember emailing a well-known cancer support charity asking what help they could offer me and my family. Their response? They couldn’t offer anything unless the ill person triggered it (and Mum wouldn’t have done that – her and Dad decided given her job we had a lot of support already). I understand where my parents were coming from, I understand that the charity has to have cut-off-points, but it was still a tricky response to hear, particularly because if I had a pound for every time someone had told me to go to them over the last 3 years, I’d have a deposit for a mortgage. Everyone assumed they would offer help to those affected-by-extension. But they didn’t. Why was I left out of their compassion?

Cancer doesn’t just affect the ill person, it affects all of those around them, and it keeps on affecting them, even after the person is in remission, even after the person has died.

I didn’t used to get angry. I didn’t used to panic that my family were dying/dead. I didn’t used to feel sick when my phone went off. My asthma didn’t used to be this bad (a lesser-known side effect of stress). I used to be able to sleep in my childhood bedroom. I used to be able to be able to see cancer adverts on TV and ignore them. I used to be blissfully bumbling through life thinking I had all the time in the world left with Mum. I used to be able to get angry at her and know she wouldn’t leave. I used to be able to give her a hug. I’m terrified of leaning on anybody because if your Mum leaves, then who won’t?

I’m not writing any of this to make anyone feel sorry for me, or because I want anyone to offer me life-changing advice. Life happens. There’s nothing anyone could have done to prevent or cure Mum’s illness. I’ve had a lot of support through it, even now, because I’m really, really, lucky. My family are wonderful, Hope Support do a group Facebook chat every two weeks, my GP continues to either help me through life, or drag me through it depending on what mood I’m in, the welfare tutors at uni were brilliant, uni counselling helped a lot while I was there, my uni college administrator is an excellent hug-giver, I have some incredible friends who understand that sometimes I need to talk, sometimes/always I need to craft, and sometimes I need to just be quiet, and my work are super supportive.

Having people around you makes such a difference, even if you don’t want them around you, just knowing that they’re there can help.

So this World Cancer Day, please do unite. But please don’t limit that unity to those with a cancer diagnosis. Please stand in solidarity with the family and friends of those affected by cancer. Please stand in solidarity with those in remission from cancer. Please stand in solidarity with those who’ve had a loved one die from cancer (however long ago it was). Cancer doesn’t just affect people while it’s happening, it affects them for the rest of their lives.

The Moment Everything Changed

It’s ‘time to talk day’ tomorrow. I was volunteering at a time to talk day event when Dad text me asking me where I was and came to pick me up. He told me in the car that Mum’s cancer had come back and that there wasn’t a cure. From that point on my Mum was no longer invincible and everything changed.

Mums aren’t supposed to die, or to get sick. Especially not healthy Mums. They’re supposed to always be there. They are one of the few people in life who don’t get fed up with you (or if they do they’re not meant to show it), who put up with all of your flaws.

In that moment everything changed.

Dad told me that Mum’s cancer had come back. That there was no cure. We were driving from the White Rose Centre to home. I didn’t cry, not really. I looked out of the window. We drove home. Mum and the boys were there. We didn’t talk about it.

I went back to uni that night. I started crying and didn’t stop. I think I maybe text one of the people I was living with in halls. I text a friend from home who drove over to be with me, with another friend. The two of them sat with me until the early hours of the morning. They tried to persuade me to go home, but I couldn’t. They helped me tell the other people I was living with. The next day I sat with a welfare tutor for hours (even though it was a Sunday). I cried, I talked, I sat in silence. I tried to make some sense of it all. We wrote a list of all of the people I needed to tell.

I miss her and sometimes I need her more than others. And given that I’m now 22 and rather more independent, I probably wouldn’t be living at home and wouldn’t be able to crawl into her bed, like I did at 16/17 when things were rough. But I would have been able to text her, and to be honest some days I might have gone home for the evening and got a Mum hug. I miss her. Some nights are long. Sometimes everything feels dark and twisty. And sometimes at 22 you still really need your Mum.