Let’s Talk About Grief

Death is part of life, but it’s also difficult, and on the whole, crap.

It might not be that bad for the person dying – they might have been ill for a long time or might be ready to die. But for those left behind it’s usually rubbish and leaves them living with grief in some form. (If there isn’t anyone left behind then that is also crap, because nobody should be alone at the end of their life, so whichever way you look at it, death is rubbish).

Despite this, grief is something rarely discussed. It’s a bit odd, because while some subjects are becoming less taboo and more talked about, which is brilliant, grief appears to be lagging behind.

I’m not entirely sure why this is. It might be because those working to break down stigma – being more open, sharing their stories, talking about difficult subjects – tend to be slightly younger and maybe haven’t yet reached an age where grief is a feature in their lives. (I appreciate this is a huge generalisation and stereotype and there are older people also doing some brilliant work).

Whatever the reason, grief isn’t hugely talked about

This year seems to have contained more celebrity deaths than any other in my memory. A lot of people are blaming 2016 but it’s more likely to be that they were all a similar age and life happens. The fact that so many people are blaming 2016, instead of seeing death as part of life, further illustrates how afraid people seem to be to see death as something unavoidable that happens to everyone. It can be far easier to blame the concept of an evil year, than to face up to our own mortality.

Mum had excellent end of life care. She worked in palliative medicine all her life, so she knew what she was doing, but she died where she wanted (at home), pain-free, next to Dad, and I can’t think of a better death than that. Mum knew what she wanted, Mum and Dad discussed it, and her wishes were made known to all of the people looking after her. I’m absolutely convinced that Mum wouldn’t have had a ‘good death’, without having these conversations frankly, honestly, and in enough time for her wishes to be carried out.

Since Mum died, I’ve blogged about grief a little, and heard from people all over the world, of all ages, who are going through a similar thing. The fact that I have heard from the variety of people I have, shows that there is a lack of conversation surrounding grief, because if my blog attracts these people (and I’m just one little person typing from my bedroom, onto a blog that I put no money into advertising), then people are clearly hunting out the ‘I get it’ of another grieving person.

I’ve found that when it comes to grief, so many people don’t know what to say or do with me. As many of my friends know – I’m as blunt as they come at times – I certainly don’t expect anyone to do and say, or not do and not say, anything at all, but I still feel like there can be a wall between me and other people sometimes. Weirdly, the people I’ve found most at loss of what to say have probably been services, some people in services are brilliant, but others blame things on grief that aren’t grief-related, ignore grief at times when it’s probably worth bearing in mind, and trot out generic lines which aren’t at all helpful. I know I’m not alone in this because I’ve spoken to other one-parent people my age who have found the same thing.

If there’s anything that comes from all of these celebrity deaths, I hope it’s that we can open up conversations around death, dying and grief. It’s something that I never really thought about until Mum became ill, but since her illness and death, it’s something I’ve realised is massively important. It’s important to have conversations with your loved ones about what you’d all want at the end of your life, it’s important to keep talking to your grieving friends, and it’s important to keep talking to others if you find that you are grieving yourself.

How Do You Celebrate A Dead Person’s Birthday?

It was Mum’s birthday over the weekend. I asked my flatmate how you celebrate a dead person’s birthday. Perhaps with a caterpillar cake and a solitary candle, alone in a room somewhere. She said she’d join me on the cake.

It’s odd how arbitrary dates become meaningful when somebody dies. So many days have passed by since Mum died, most without a second thought, but the 23rd of each month, the monthly anniversary of her death, always sticks in my mind.

Mum was first diagnosed with breast cancer just before her 50th birthday, and it really wasn’t a ‘thing’. I was talking to someone the other day about how it literally wasn’t a big deal when Mum was first diagnosed. None of us thought it would ever come back. None of us were ever particularly worried about it. Mum had caught it early; she had a lumpectomy, and then chemo and radiotherapy. But we were told the chemo and radio were preventative not cureative. Mum would take a week off work for each round of chemo, and for radio she just nipped down while she was at work. Cancer round one flew past us and we barely blinked. It was nice to have Mum home a bit more, and she taught me how to knit, but beyond that life carried on as normal.


That’s why, when the terminal diagnosis appeared, it was all a bit of a shock (at least to us, I think Mum had known there was something not quite right for a few months).

It was four years ago now that Mum was first diagnosed. It’s both amazing and horrible how much life has changed in that period of time. Four years ago I had never seen Mum with no hair, I’d never seen her in a wheelchair, fed her water through a sponge, or wiped her face for her when she couldn’t reach. I’d never made a tiny pizza cut into tiny pieces, made scrambled eggs, or cried into Mum’s unresponsive body. Dad had never sent Mum flying upon encountering a rabbit hole whilst driving her wheelchair, broken such horrible news to our family and friends, or driven to and from the hospital upwards of five times a day.

Even in the almost-year since Mum died, so much has happened. My brother got into Oxford, my other brother picked up a handful of GCSEs, and I got a new job. My granddad has been reinvigorated upon the installation of a pacemaker, my Dad’s flown his plane to new places, and my aunt and uncle have visited new countries.

24th September, Mum’s 54th birthday (or do you stop counting when someone dies?) passed, just as every other day has. People often say that they hope their loved ones are celebrating wherever they are but I’m not sure I believe in heaven, or an afterlife. I’m not sure I believe that Mum is alive in another world, space or time. I think she’s probably just dead. But her spirit and everything she’s taught us will live on in us.

One thing we have decided to do (which is perhaps a little cliché, but we’re rolling with it) is to raise money for charity. The local children’s hospice needs £5000 to install new lighting along the corridor by the children’s bedrooms, which will not only make it nicer for the children, but will also light up the artwork on the walls. Mum worked there for many years, before later becoming a trustee, and myself and my brothers have fond memories of spending time there while she was working. The hospice holds the values, vision, and beliefs that Mum held. It’s an ambitious target, but we’re hoping to raise this money through donations and fundraising. If anyone would like to make a donation in Mum’s memory, you can do so here, or by texting ‘FOYO53’ followed by £1, £2, £3, £4, £5 or £10 to 70070.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/celebrating-birthday_b_12199738.html

Hurt, Scared, Sad.

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.


Not Like The Movies

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

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

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

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

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

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

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

Why am I blogging this?

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

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

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

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

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

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

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