Can We Please Talk About Death?

My Mum died. I didn’t lose her – she was in the lounge. She didn’t pass anything, death isn’t an exam and what does ‘pass away’ even mean?! She died.

You can talk about her and mention her name without whispering it. It’s okay. I like talking about her. I like remembering her. I like hearing stories of her.

I’m sick of people treating grief like a broken eggshell. Talking about it will not cause your own parent to die. Death happens to everyone, so surely we need to work out a way to talk about it?

I posted the above on one of my social media channels the other day. I was really surprised by the response. So many bereaved children commented saying how much they agreed. They also included the awkwardness that comes when someone says ‘I’m sorry’. How do you respond to that? I always say ‘well it wasn’t your fault’, but that sounds callous. As does saying ‘well it was a long time ago’, or ‘it’s okay’.

Nobody knows how to talk about death. We resort to nonsensical euphemisms. Nobody knows how to talk about grief. People whisper. Or they blank words out of sentences. It’s awkward and uncomfortable. Death and grief seem to have become one of the biggest taboos in our society. It’s really quite odd, because death and grief happen to literally everyone, so of all the things which could be taboo, it’s a bit bizarre that death has become one of them.

Rio Ferdinand did a fantastic documentary the other week where he spoke about the death of his wife, and the grieving process that he continues to experience. He spoke about his worries for his children. He spoke about his resistance to therapy, and later his need for it. It was raw, open and honest. It was refreshing to see an honest account of grief on a national TV channel. We need more of it.

Grief is horrible and unpredictable. It will affect everyone differently, and different people will need different approaches when it comes to talking, or helping. But rather than projecting your idea of what constitutes ‘help’ onto another person – why not just ask them what they need, or what they would find helpful?

The only way we can start to break down the walls that death puts up, is to talk about it. The only way we can begin to ‘trial and error’ our way through the language surrounding death, is to begin to try, experience a few errors, and slowly work out the best way for these conversations to happen. Death and grief aren’t a big black hole that needs to be avoided at all costs. Talking to someone about it won’t make you fall in the hole and keep falling until you can’t get up.

Please ask your friends if they would like to talk about their dying family members. Please ask your friends and family if they would like to talk about their dead family members. It might be awkward and uncomfortable, especially to begin with, but death happens to all of us, and slowly, together, we can work out a way to talk about it in a more comfortable way.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/can-we-please-talk-about_b_15940260.html?utm_hp_ref=uk-universities-education&ir=UK+Universities+%26+Education

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.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/grief_b_15181620.html

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.

Toast Didn’t Kill My Mum

It’s rare that I write a blog post directly in response to things I see on my Twitter feed. A lot happens in the news every day, and there are many people, far more qualified than me, who write articles informing us, explaining things to us, and offering up their opinions on the various things happening in the world.

However, I’ve decided to make an exception this week, because I am fed up of seeing articles pop up telling me that if I eat a certain food, it could lead to cancer.

My Mum had cancer. My Mum died from cancer. Mum was a normal weight, she didn’t have the ‘cancer gene’, she never smoked, never got drunk, ate relatively healthily (she was fairly convinced chocolate could cure all of life’s problems, but balanced it out with all the other major food groups so it was all good), she exercised, wasn’t overly sleep-deprived the majority of the time, she never used sun beds, rarely got sunburned (not content with suncream, we went one-step further in our family and wore long-sleeved tops when it was particularly hot (ginger genes!)), she never used drugs, in fact I don’t think pre-cancer she was even on any prescriptions bar an inhaler. She still developed cancer aged 49. It still came back aged 51. She still died aged 53.

Mum was obviously unlucky, and I’m not saying that all of the science linking various cancers to various lifestyle factors is wrong – far from it. There are clear links between sun damage and skin cancer, alcohol and liver cancer, smoking and lung cancer etc. (for more on scientifically proven links, check out the cancer research ‘causes’ page). Most weeks Mum, a palliative medicine consultant, would come home from work and tell us smoking horror stories – I think if any of us had ever come home with a whiff of smoke on us, she would probably have temporarily disowned us.

That being said, there are some, quite frankly, bizarre claims flying around at the moment, and they’re just not helpful.

The three I’ve seen this week are: burned toast can cause cancer, potatoes can cause cancer, and toothpaste can cause cancer. All have some scientific link between food item (for the purposes of this blog, toothpaste is a food), and cancer. None have proven the link in humans.

There are so many food controversies surrounding cancer; often the same food is listed as a cure and a cause, depending on the study. It’s just not helpful.

Perhaps there is a very, very small link between an ingredient in toothpaste and cancer (in rats) – but I’d go out on a limb and say that it’s probably more damaging to your health to never clean your teeth, than to use a blob of toothpaste twice a day. (After all, unhealthy gums has been linked to heart disease, so we’re clearly all stuffed either way, and might as well die with nice teeth than no teeth!).

We’re all going to die of something at some point. As someone said to me on Twitter the other day: life causes cancer. None of us are going to live forever. Every single one of us is going to die at some point, of something, or in the words of John Cleese: ‘life is a terminal disease’.

Mum died, arguably, before her time, and I clearly remember asking her once she was diagnosed as terminal whether she was angry that it was happening. Her response? God had given her so many days, and she’d lived those days to the full. (She was religious, but change ‘God’ for ‘life’, or the religious figure of your choice, and it still works). She was definitely stronger and more dignified than I think I’d be in that situation – I think I’d be annoyed, upset, and pretty angry – but Mum was right, she really did live every day to the full.

Which would you rather – surviving until 103 but never really living, being scared of everything you touch (and never having crispy potatoes or slightly over-done hot-cross buns), or dying at 53 having lived a full and happy life? I know which one I’d choose.

Until there is solid evidence that burning your toast, cleaning your teeth, and having some gravy-drowned roast potatoes with your Sunday dinner causes cancer, I suggest you take these articles (and any others with equally tenuous links) with a pinch of salt and carry on living your life. Life is short – make sure you live it, don’t just survive it.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/toast-cancer-risk_b_14420240.html

Is it getting easier, or am I just numb?

There have been a few things that have happened in the past few weeks which would normally trigger off ‘missing Mum’ alarm bells. They range in size, from those that would have knocked me for a few days, to ones which are just a bit tricky.

Things like:

  • Christmas (without Mum)
  • New Year (oh look, you have to survive another year without your Mum)
  • Getting a new phone (my old one was inherited from Mum, but there’s only so many times you can apologise to the person on the other end of the phone for the fact that your alarm is going off (while on the phone) and you can’t switch it off because your phone has frozen… before a new one becomes a bit necessary. I have mitigated it slightly by putting my favourite picture of us as my background, so I’ve still got Mum in my pocket)
  • Feeling ill (my flatmate and I had a discussion last night over which of my meds it might be a good idea to take, whether NHS 111 might be a good plan (nah, they’ll either tell me to go to bed or to A&E, and I don’t feel like going to A&E) and eventually concluded that heat packs, gaviscon and sleeping tablets with a ‘maybe it will be better tomorrow?’ would be a good plan)
  • An exam (who knows how that went as I’m currently a person of no brain and not really well enough to do much at all never mind take an exam, but I couldn’t postpone it again, and the invigilator said that I’ve aged well, so I feel like I won a little bit)
  • Upcoming appointments that I’m not feeling too fab about (Mum’s are good people to text ‘arghhhhhhhhhh’ to).
  • Feeling like generally, with my health, I don’t know whether I’m coming or going, and what to believe (Mum was always fairly blunt, if I walked in looking like I was dying she would tell me)
  • My mental health being a knob (seriously, as a twenty-something year old it’s hard enough to navigate life and try to keep yourself alive without your head attempting to kill you)
  • New year new diet crap (which she would have healthily laughed at and torn apart whereas every time ‘veganuary’ and ‘a researcher has decided that breakfast is bad for you’, I wish I was well enough to join in)

However, despite all these things, the ‘missing Mum’ part of my brain appears to have disappeared (along with the rest of my brain, arguably).

It’s not that Mum doesn’t ever enter my head, but when she does, at the moment, it’s in a much more clinical sense, with all of the emotion removed. It’s not that she never enters conversation, either, because she does (most recently this evening, with the exam invigilator), but when she does, and people say they’re sorry, I normally meet it with a bit of a shrug and an ‘it’s life’, where it might previously have set off cartwheels in my head.

I’m not sure if it is actually getting any easier, or if I’m just numb.

A lot of things, or perhaps everything, is pretty numb right now. It’s not as bad as it might sound – I’d rather be numb than distressed. I often end up in a weird depression-anxiety battle, with depression pulling at me to do nothing, and anxiety screaming at me to do everything; at least when I’m this low the battle pauses because anxiety gives in. So with everything being a bit numbed, it’s hard to know whether grief is lessening, whether it’s becoming the ‘new normal’, or whether depression is just smothering it.

For now I’m just going to keep plodding along, because I’m not really sure what else I can do.