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.

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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

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.