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.
Featured on Huffington Post here.
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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.

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

This is to those of you for whom Christmas doesn’t feel like Christmas.

This is to those of you for whom Christmas doesn’t feel like Christmas.

I’m sorry that you are hurting.

I know that the ‘merry’ in ‘merry Christmas’ can feel as though it is mocking you.

When the whole world feels as though it is laughing, smiling, and celebrating, but those are the last things you feel like doing.

Crowded rooms can feel the emptiest.

Hugs can feel like they’re not quite tight enough, not quite long enough; never quite reaching you.

You smile but it doesn’t reach your eyes, and your own laugh seems distant and far away.

The pressure to be perfect can press down on your chest until you can no longer breathe and the number of people around can make your head spin. Occasionally you feel your mask slipping and you have to run to a bathroom and fix it before anybody sees.

Everybody wants to know what you’ve been doing all year and what your future plans are. That can be hard to answer when you’ve spent so much of the year in doctors appointments, hospital visits, and counselling sessions. It’s hard when your test results are medical rather than academic, when so many of your peers are patients or services users not students or colleagues.

It’s okay if your biggest achievement this year is survival. Fighting against the crap in your head, the illness that is determined to infiltrate your body, or the general difficulties that life insists on constantly throwing your way, is huge. It’s hard, brave, and courageous to continue to get up and dressed every day (or most days), when circumstances seem determined to destroy you.

Maybe you’ve lost someone this year. They might have died, or might have just exited your life. Maybe you lost someone last year, or the year before. Time doesn’t heal it, it just gives you longer to attempt to get used to it. Sometimes it makes it harder because the longer they’re gone, the more they’ve missed. Christmas can feel like it’s shining a light on the space that they’ve left behind.

It’s okay to miss them. It’s okay to grieve for them. The fact that they have exited your life doesn’t mean that you have to erase their existence entirely.

Be kind to yourself this Christmas. Let yourself have some time off. It’s absolutely okay to cry if you need to. If you want to laugh, then laugh – nothing in your life cancels out your right to feel happy. Let people in; if you can, and if you want to. Let them hug you. Let them be at the end of the phone. Let them text you. Let them listen. Let them be there.

Maybe you’re feeling just fine. If so, then please: try to be considerate this Christmas. Please understand that not everyone will be happy, not everyone will want to share copious amounts of food, not everyone will be able to manage being around large groups of people.

Christmas is only one day, but it can be incredibly stressful for those of us who don’t feel able to tackle it. Mental illness, physical illness, or other things, can all affect people’s ability to ‘Christmas’, and more often than not, we’re not trying to be difficult, we just can’t do it.

I hope that you all have a peaceful Christmas this year. I hope that it’s as stress-free as possible. I hope that you get a little time with your family or friends and that it’s as enjoyable as it can be.

I’ll leave you with some Winnie the Pooh wisdom:

“It’s snowing still,” said Eeyore gloomily.
“So it is.”
“And freezing.”
“Is it?”
“Yes,” said Eeyore. “However,” he said, brightening up a little, “we haven’t had an earthquake lately.”
― A.A. Milne

Charities and Campaigns You Could Consider This Christmas

This blog post is a little late, but life has been getting on top of my lately and I’m a bit behind with everything! Christmas is a time when lots of people consider giving to charity, which is absolutely wonderful. I thought I’d do a little post with a few suggestions of places you could donate to.

Presents for the elderly in hospital
I know that York Hospital are currently accepting present donations for the 15433766_1087563644689637_4144773404954213601_nelderly who are in hospital over the Christmas period (here is the press article). I imagine that other hospitals are doing similar (if you don’t live in York). We bought a few boxes of chocolates and gift sets the other night and we’re going to drop them off later this week. It’s not something that costs very much but it can make the world of difference to someone in hospital over Christmas. (Update: gift collection at York Hospital has been halted due to an overwhelming response, but I imagine there are many other places who would appreciate gift donations!).

Martin House
We are still currently collecting for Martin House, to replace the lights in the corridor of the children’s bedrooms in memory of Mum. If you’d like to donate to this fund, you can do so here.

Yorkshire Cancer Research
We are leading the YCR collection this Christmas. They’re encouraging people to share treasured memories and donate in memory of a loved one. You can see more on their campaign here and here. I’ve also included the letter I wrote to lead this campaign below.

Whatever you’re doing this Christmas, I hope you all have a peaceful time with your family and friends, and that it is as stress-free as possible for you all. Xxx

The YCR letter:
I used to love Christmas. Mum would start the preparations in October half term with baking the cake. It would fill the house with wonderful smells, marking the transition from summer to winter. The cake baking would closely be followed by weekends spent cooking mincemeat, baking and freezing batches of mince pies and the odd Christmassy pudding.

We used to alternate our Christmases – one at home, one with Mum’s family. Years at Mum’s family’s house were a little quieter, we would often pop in on other relations over the festive period, but Christmas day itself would just be me, my brothers, my parents, my Grandad, Aunt and Uncle. Years at home were a little more chaotic – Mum was usually ‘on call’ (she was a consultant in palliative medicine, or end of life care to you and me), so she would often be on the phone to hospitals or hospices and would occasionally have to pop out. The house would always be full, often reaching 20 people by Christmas day – rarely would there have been under ten people in the house over the whole festive period.

The last time we had that many people in the house was for Mum’s funeral.

Mum was diagnosed with breast cancer in August 2012. She found it early, had a lumpectomy followed by preventative chemotherapy and radiotherapy. Spring 2013, she was given the ‘all clear’ and started on Tamoxifen, a drug developed by Yorkshire Cancer Research, which helped to keep her in remission. Unfortunately, Mum’s cancer came back. In February 2014, she was diagnosed with terminal cancer; she died in October 2015 aged 53.

Mum asked for money given at her funeral to go to Yorkshire Cancer Research. I knew that Mother’s Day this year was going to be difficult, so I knew that I needed to do something positive. That’s when I set up ‘Memories about Mums’ – a way of fundraising for YCR, but also a space for those of us who are motherless to share our memories and celebrate our Mum’s lives.

Living without Mum is hard; I miss her every day. I miss texting her, seeing her dance around the kitchen whilst cooking or baking, and spinning on the spinny chair in her office – distracting her from whatever work she was trying to do. Mum has helped make me the person I am today. She was always busy, always up to something, often helping other people, and that’s something that I will always look up to.

The festive period doesn’t make that grief any easier. Nobody teaches you how to cope with grief – there’s no guidebook or manual to get you through it. One of the things that helps me, though, is to direct that grief into something positive, whether it be writing, fundraising or helping others. The blogs I write won’t bring Mum back but might help someone else in the same position, and any money I raise won’t bring Mum back, but will fund vital research which could prevent others in Yorkshire from also having to have Christmases without their Mum.

It would be lovely, if this Christmas, we could extend ‘Memories about Mums’, and share memories of all the loved ones who won’t be with us this Christmas, whether that be through a donation in their memory, or a donation of the amount you would have spent on a Christmas present for them.

Together, we can help to tackle cancer in Yorkshire.

Dear Mum, It’s Been A Year Since You Died.

Dear Mum,

It’s been a year since you died. 525600 minutes if ‘Rent’ is to be believed. ‘525000 moments so dear’ (quite what happened to the other 600 moments is anyone’s guess).

It’s gone fast in many ways, though part of that could be because I lost a number of months to depression, sadness, anxiety, or whateverelse you want to call it.

Time is a funny old thing. No matter what is happening, it continues. It can feel fast or slow, but ultimately, a second is a second, a minute is sixty seconds, an hour is sixty minutes. Time really does go on.

The world is a little darker without you in it. A little duller. Your laugh no longer bounces off the walls of the house. Your arms no longer gather me into a hug when I walk through the door. Your smile doesn’t greet me as I come up the drive. I’m remembering things with a positive slant. Of course it wasn’t always like that, especially when you were working late, or once you became ill, but who wants to remember the bad stuff? I still can’t believe I’ll never take another photo with you.

The depression is nothing new, you know that. Often, when you would wake me up on a morning, I would be crying – crying in my sleep, literally waking up on the wrong side of bed, having a bad day before I’d even moved a muscle. You would see me crying and give me a hug. You would get my clothes ready for me and remind me how to get dressed. You would feed me chocolate on an evening (because it could fix anything). You would only ever be a text away, even when you were ill. You would let me come into your bed in the middle of the night when the world felt dark and the nights felt never-ending. You would ask what was wrong but not expect an answer. Your calm, quiet understanding and love could carry me through the hardest of days and the toughest of nights.

I need a hug, Mum. Things were getting easier for a while but at the moment they are getting hard again and often getting from my bed to the kitchen feels like wading through treacle. It can be hard to move. Everything aches and I don’t know why. Maybe my body is missing you. I have to set my alarm earlier in the morning to allow for the dazed confusion when I can’t function or remember anything much at all when I wake up. Sometimes life can feel all over the place and I need a ‘Mum hug’ to ground me. A Mum hug to set everything straight. A Mum hug to make the world feel safe again.

I keep panicking that people are dying. You were the healthy one, the fit one. You ate well, had a normal BMI, exercised, never smoked, didn’t drink much… the perfect candidate for a long and healthy life. I look at those I care about now and see walking diagnoses. I panic when I get a text from Dad or one of the boys. I’m waiting to hear that someone else is ill or someone else has died. It’s only a matter of time.

A lot can change in a year, it seems. I’ve moved house twice, and well and truly moved out of the house I grew up in. I’ve started a new job – well, two new jobs, but one was short-lived. I think you’d like my boss and colleagues; they’re on your wavelength. Both J and I have passed our driving tests (finally!). J has started at a new uni on a new course, and from the significant drop in the number of texts I receive on a daily basis, I can only assume he’s enjoying it (or he’s got fed up of my lack of replies…). E has started sixth form and seems to be loving it. He’s met new people and worked out that every other week his frees align with his friend’s and they can all go round to someone’s house and eat pie. He’s found someone at school who went to his nursery – we looked for his nursery class photo but couldn’t find it. You would know where it was. Dad has started learning to swim front crawl, he’s joined the local AmDram, he’s continuing to use his share in an airplane fly all over the place (though never as often as he’d like), and he’s just about keeping on top of the selling FairTrade stuff at church. Pops has had a pacemaker fitted which brought a new lease of life – he’s back to emailing us little poems and procrastinating raking up the leaves in his garden. We’ve all ‘moved on’ in our own little ways – maybe ‘moving on’ is the wrong choice of words, but we’re all sort of continuing to live.

Someone asked me the other day if I ever talk to you. I don’t. What is there to say? It’d be a pretty one-sided conversation. I often talk about you as if you were still alive, though. It catches people off guard, sometimes. Most people have stopped asking now. Death is just a part of life, but not a part that people like talking about – as a palliative medicine doctor, you always said that people should talk about death more, and now I understand why. I don’t think that death is something which should be feared. I was talking about this with E the other day, we both decided that if we were held at gunpoint we would rather die than be seriously injured. Not that people who have had serious injuries can’t lead fulfilling lives, it’s just somehow more scary to contemplate that than it is to contemplate death.

I miss you. Many people say ‘time heals’, but time only seems to make it harder. It’s more time without you, more times where I’ve missed your advice, more time without a hug from you, more times that I’ve not been able to update you on my life, more times when you’ve not been on the end of the phone. It often feels like a gaping hole – I never knew that absence could hurt so much. The pain can be crippling.

Time has taught me how lucky I was to have you and quite how amazing you were. I hear stories from your friends, colleagues and classmates. I find your work online. Lessons you taught me come back to me when I’m going about my day. I take your values to work with me every day. I chat to people who never knew you, I describe my relationship to you (the ups and the downs, because it certainly wasn’t all plain sailing), and they remind me how lucky I was to have had a Mum as amazing as you.

I know you wouldn’t want us to spend time missing you. You would want us to make the most of every day. To take every opportunity and try our best in all that we do. You would want us to value the time we spend with each other, enjoy our jobs, and ensure that we play as hard as we work. You did all these things with such apparent ease. I have no idea how you kept everything going, I struggle with a fraction of what you did, but you did it. You worked hard, played hard, loved hard. An incredible wife, Mum, daughter, colleague, doctor, auntie, congregation member, band member and friend, right to the end.

I want to say that I’m sorry for not being more, doing more and achieving more. But I know you would tell me that my best was good enough and I need to be kind to myself. I want to say I’m sorry for not always being kind to myself – I’m not sure what your answer would be to that (probably a hug).

I’ll end this here. It’s very long and nobody wants to read all that. Plus, you can’t exactly read it so I’m not sure why I’m writing it. Maybe in a vague attempt to help someone else. Perhaps an effort to make sense of some of the crap filling up my head. I don’t really know.

I miss you Mum. Lots of love. Xxx


We’re currently fundraising in memory of Mum, one year on.
Here is where you can donate to Mum’s ‘one year on’fundraising page online.
If you’d like to donate via your phone, please text ‘FOYO53’ followed by £1, £2, £3, £4, £5 or £10 to 70070.