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Life and loss in lockdown – Fred’s story

We were the kind of family that fast forwarded through the sad stories.  In 2019, we watched Celebrity Hunted on Channel4 for Stand Up To Cancer, and would reach for the remote as soon as the ad break started “Who watches these?” we would all shout, and text a donation to assuage the guilt. “One in two people will get cancer in their lifetime” the ad break said.  Thirteen year old Fred turned to his brother and said “I hope it’s you not me, I don’t want it” and we gasped in outraged horror.

A couple of months later, Fred was diagnosed with Acute Lymphoblastic Leukaemia, almost overnight.  Apart from chicken pox and the odd ear infection, Fred had never been ill before.  He had been sent home from school on a Friday afternoon feeling unwell, and by Monday night we were in A&E receiving his diagnosis.

Our world ripped apart, just like that.  We were immediately transferred to Birmingham Children’s Hospital and treatment began the next day. 

You never think it will happen to your family until it does.

Suddenly we were locked down.  Our holiday was cancelled, Fred’s central line meant he could no longer go swimming.  We were not allowed to travel anywhere more than 30 minutes from our hospital.  I carried a thermometer in my handbag to check for temperatures.

Fred was a grubby boy.  His primary school teacher once said she had never known a boy so consistently dirty – muddy knees, grass stained shirt, dirty fingernails.  Suddenly we had to find a way to keep him clean.  We kept hand gel by the front door and all washed our hands 10 times more than before.  We had to check nobody was feeling ill before they visited.  We avoided crowded places and enclosed spaces.

I ran my own business but pretty much stopped working overnight.  I tried hard to get things  done but in reality, Fred’s treatment was a full time job and nothing could be planned in advance.  My husband’s company was supportive and allowed him to work from home.

After three months, Fred was entitled to Disability Living Allowance, our only benefit.  Our ClicSargent worker sat with me in the hospital and went through the lengthy application.  We sat and listed every drug, every side effect, every treatment.  Every way in which our lives had been transformed forever.  Every way in which Fred’s life was not what it had been.  I longed to write “my child had cancer” in sharpie across the front and was furious that they needed more than that for £600 a month.

By the time Coronavirus began appearing on the news, Fred’s situation was more precarious.  His cancer had not responded to chemotherapy, and he was waiting to receive Car T Cell therapy.  Initially, people’s anxiety about the virus only made us feel safer.  Welcome to our anxious world. Although Fred was high risk, at least everyone was washing their hands now.

As Coronavirus marched higher up the headlines, it really was the least of our worries.  Fred had a seizure which sent him to ICU, just as ICU beds were about to be in short supply.  We worried that the Car T Cells might not make it over from the States. We removed our younger son from school so that he wasn’t putting any of us at risk. 

As the rest of the nation wrestled with Joe Wicks and fronted adverbials, panicking over loo roll, we tried to make sense of how these rules could possibly apply to us.  We ran through the hospital equivalent of the fox, the chicken and the bag of grain as we tried to work out how we be a family when our younger son was no longer allowed in the hospital.  All of the things which had made hospital life bearable – fun even – were taken away.  The visitors, the communal areas, the school teachers, the youth workers, all no longer allowed on the ward.  The parents’ accommodation at the hospital closed.

Fred tested positive for coronavirus shortly afterwards, although he had no symptoms.  We were moved into an isolation room for 10 days.  Due to his leukaemia rather than Covid, we were told at the time that his condition was life threatening and he could deteriorate rapidly.  My husband would be allowed to see him, but if he did he wouldn’t be able to leave the room either.  So that’s what we did.  All three of us, in one hospital room unable to step outside the door.

Fred rallied, we emerged and were transferred to Great Ormond Street for his Car T Cell therapy.  His brother was allowed to sneak if for an illegal visit for half an hour before he left.  That was the last time he saw him.

Fred died on 3rd May 2020.  During the three weeks we spent at GOSH we did not see the doctors’ or nurses’ faces from behind their masks, we were allowed no visitors.  We spent Fred’s 14th birthday by ourselves, too tired for Zoom calls.

His funeral was held just as lockdown was starting to lift.  Only 10 close family members could attend an outside burial, no one could come in the house.  However, people lined the streets as his motorbike hearse drove through the village.  His brother and a group of his friends rode their bikes behind him.  People left messages and memories on the tree outside our house.

We were left alone to grieve.  Like the WH Auden poem, all the clocks had stopped.  Everything was spoilt.  There were no parties, no holidays, no barbecues, no sports days.  Just quiet.  It felt like the world had been put on hold, just for us, and just for him.

I vividly remember, weeks before, sitting in Fred’s hospital room watching Rishi Sunak announce his emergency measures.  These were unprecedented times. It was unthinkable that people could be expected to take indefinite unpaid leave overnight.  This unforeseen crisis would have devastating consequences on families through no fault of their own, and they needed the nation’s help.  The emotional fall out should not be underestimated. It brought into sharp focus that this was exactly what had happened to us 9 months earlier.  Our life had shut down overnight and there was no rescue package, nor for any of the other families on that ward.

We were lucky enough to have incredible family and friends.  They paid our mortgage, bought us food, tended to our garden.  They’ve left things on the step and invited us into their gardens, they raised money to provide us with some security. 

I hope that over the last 6 months we have all learned that we are all just a moment away from the unthinkable. But as lockdown returns, and we all worry where we will be for Christmas, we are left knowing that will never happen for us.  Our lives are forever changed. 

We can only resolve to make sure that other families are not left to cope alone.

We have set up the Don’t Look Down Fund in the hope that more children will get the chance to live the life they deserve. Fred’s medical team said that they still don’t know why some types of leukaemia don’t respond to standard treatments. The money raised will fund research into finding new cures and treatment plans for refractory ALL. We also would like these new treatments to be kinder to children, with less short- and long-term side effects than existing chemotherapy.

Band of Mothers: the true meaning of Mother’s Day

When I was a child, I loved Mother’s Day.  More specifically, I loved Blue Peter and never more so than when the presenters uttered the magical words “Mums leave the room” before they unveiled this year’s craft creation.  I’m actually rubbish at crafts, so my Mum would feign delight at the latest wrapping paper, matchbox and Copydex creation.  I’d attempt a breakfast in bed, which again she pretended to enjoy whilst hiding the fear in her eyes wondering what I’d done to the kitchen.

I have written about her before, and all the things she taught me (spoiler alert: ironing not one of them) 

If you asked me to give an example of how much my mother loved me, it wouldn’t be the big stuff.  I was a teenager and we were on a plane.  I was also a vegetarian in the years when it was still awkward.  My vegetarian meal on the plane doubled as the ‘any other dietary requirements’ meal which meant that whilst everyone else received a chocolate brownie, I was given melon.  Melon!  My Mum didn’t even look at me, but silently swapped.  Reader, she didn’t like melon either.

Her last Mother’s Day was just 10 days before she died.  I bought her a very large bunch of flowers, because we both knew that any gift was pointless.  She apologised over and over again, through the sickness, weakness and broken sleep, that I should not be doing this, that it was the wrong way round.  And I reminded her of how many times she had done it for me, and that this was how it worked. 

Although she never met my children, she taught me what love looked like, and she taught me how to be a mother.  I didn’t learn to raise my children without a mother, I had one whose voice I could hear constantly in my ear, and whose presence my children largely felt through carbohydrates.  

Mother’s Day has been hard for a long time.  Even when I became a mother, you couldn’t just take a run at it.  My husband has also lost his mother so it is a course filled with obstacles and debris. Our children have never known their Grandmothers, and we avoided the traditional multi-generational Sunday Lunch, Afternoon Tea, National Trust outing like the plague.  Instead we went for walks that they weren’t allowed to complain about, and I tried to make them watch Hitchcock films. Neither of them were big on crafts, but there was pie.

  Now I sit in the shittiest of Venn diagrams where I grieve for my mother and my child.  On Fred’s last Mother’s Day he was in ICU, Arthur and I had lunch in the hospital canteen.  It is a testament to how bad things were that being on a ventilator was the least of our worries. In the surrounding months, days and hours I would need my Mum more than I ever thought possible but I would have to make do with her voice in my head, reminding me that mothers can do hard things.  To misquote JF Kennedy, “we shall pay any price, bear any burden, meet any hardship, support any friend, oppose any foe, in order to assure the survival and the success of [insert child’s name].”

Since my mother died, I have collected mothers and am always on the look out for a new shiny one, My sister, my Mum’s friends, my friends’ mums and even my own friends, who allow me to turn up, throw myself on the sofa and ask what’s in the snack cupboard. They are not all even mothers, but they all know what love looks like.

And now I have a new collection, a precious band of bereaved mothers, who, if you listen carefully, you can hear screaming expletives into the void.  All of us approach Mother’s Day with a sense of dread, not because it is harder than any other day, but because it highlights how difficult every day is, and how trivial and trifling the Sainsbury’s display appears. No one really want us spoiling the mood, always the bad fairy at the christening. We don our black cloaks and gather together, budging up and making room for everyone else that finds the frippery heavy, the motherless, those mothering alone, or those who never got the chance.

Mother’s Day has never been about the Prosecco and the bath bombs and the Sunday lunch set menu.  It is a celebration of the strength of women, and as important, the strength of women together.

None of us are special. None of us are inspirational, or strong, or exceptional, although I’ll allow that we are all bloody brilliant.  We are just like you.  We are mothers, and we know what it is to do hard things.

Every year over around 240 mother’s in the UK will face the first Mother’s Day without their child, due to cancer. This post is dedicated to all those mothers, and all mothers who are missing their children.

You can donate to Fred’s Mother’s Day Whipround here

The Little Tin Soldier With Only One Leg

One of Fred’s favourite songs that I sang to him when he was small was The Little Tin Soldier.  Originally by Donavan, it was a song my brother had sung to me when I was similarly small, so I know all the words.

The story, based on the Hans Christian Andersen story,, is about a tin solider in a toy shop who has lost a leg.  He loves another toy, a beautiful ballerina in a glass case, who is also standing on one leg, albeit for different reasons. The tin soldier is thrown into the gutter and the ballerina is sold.  The soldier travels around the world being passed from child to child until eventually he finds the ballerina again.  They end the song jumping into the fire together, although I could never really decide whether that was romantic or foolish.  Like a lot of things I suppose.

Fred and I liked it, especially as he was often caught between his Dad who was a little more in favour of keeping toys in glass cases, whilst I was happy for them to receive a little ‘wear and tear’. I’ll leave you to guess which side Fred was on.

C.S. Lewis said “The death of a beloved is an amputation”, and I haven’t found a more accurate way of describing the current state of play.  The fact of the matter is, I am now broken and a fundamental part of me can never be replaced.  The wound may stop bleeding, and even the pain might subside, but it’s never growing back. It is not meant as self-pitying, it is just a fact, and every day we must find a way to exist, let alone thrive, in this new state.

I’m never entirely sure whether I’m the solider or the ballerina anymore, and I’m not entirely sure anyone else is either.  There is an instinct for people to protect me, that I am fragile and delicate and that I’m not to be played with, only looked at in some kind of wonder.  I think it comes from kindness but it can be lonely in the glass case. There are the people who I barely know who will assume that they can ask me all sorts of intimate questions like I’m some sort of ‘Project Grief’ badge to be won, and then there are the people who I’ve known for years who look at me with terror, like they have sticky hands.  I am now someone who needs to be handled carefully, that people need to think about, and come up with strategies in advance.  I’m not very fun anymore (although obviously I’m still hilarious) so I’m sure there are WhatsApp groups that once I would have been in but now aren’t.  Fun things went on without me, actually everything moved on without me. That sense of ease has gone.  I’m never going to be one of the cool toys, the new shiny ones with lots of snazzy functions. It’s frustrating and annoying and frequently sends me into a rage.

But ultimately I am broken and battered, and I do need handling with care.  I can’t do the things I used to, I can’t keep up.  I don’t like groups, and can manage short bursts but then really need to have a nap.  One person at a time is much easier. Sometimes it’s really difficult, even nearly two years later.  It will always ‘sometimes be really difficult’ as the leg is never growing back. 

So now I’m carried to ‘children in far off lands’, the ones who don’t mind their toys a bit broken and play with them anyway.  The ones who are careful not to trash me completely, but can still come up with a decent game.  The ones who take care, but don’t put me on the high shelf.  I will be forever grateful to those people, especially the ones carrying their own wounds.

There will be no jumping in fires though., that’s just foolish.

World Book Day and the stories we leave behind

Everyone thinks that the big days are the hardest, Christmas, birthdays, Mother’s Day, but they’re not.  The hardest days are those small marks in the calendar that hit you round the back of the head when nobody else is watching.  This week has two in quick succession, dedicated to what I considered my key strengths as a parent: reading and feeding them carbs.

Pancake Day was observed with due ceremony, although without Fred’s melodramatic pancake tossing which really was a full body experience.

And now to World Book Day, which has been made even more melancholy by the passing of Shirley Hughes.

I always loved World Book Day, although I pretended I hated it.  I bristled at the expectation and I think at one point argued that it was a construct of the patriarchy.  However, I was dedicated.  My rules were strict, no film characters allowed.  If it was a film then the book had to have come first.  There would be no Darth Vader on my watch.  This always led to some angst as Fred would be completely non-committal and then very insistent about 36 hours before about what he wanted to be.  I think we had, Horrid Henry, Oliver Twist, The BFG, The Boy In The Dress, Tintin, Captain Haddock and Poirot.  I’m pretty sure I’ve blocked some out, and one year we all breathed a sigh of relief when they had to come in pyjamas.

But it’s World Book Day, not fancy dress day.  I loved reading to my children, and Fred loved being read to.  He was a master fidgeter and never really sat still long enough to read to himself, but was always happy to listen, often upside down.  By contrast my younger son was more than capable of reading himself and once brutally told me that he’d rather have audible than me because Stephen Fry did better voices.  Harsh.

Fred loved the Alfie books and we had a set of 5 that we would read over and over again.  He delighted in Alfie Gets In First, where Alfie locks himself in the house, causing much panic until he eventually gets a chair and proudly opens the door.  Even at a tiny age I think Fred was thrilled by that show of independence.  

 “The front door suddenly opened and there was Alfie. He had managed to reach the catch and turn it-like that- after all. He was very pleased with himself. He opened the front door as wide as it would go and stood back grandly to let everybody in.”

Alfie and his family were doing ordinary things that felt extraordinary to tiny minds.  From Mrs McNally’s Maureen to Bernard’s birthday party, this was the little world he recognised and learnt to make sense of. We also loved Roald Dahl and Julia Donaldson and all of the other fantastical worlds, but secretly our hearts belonged to the every day, and those little boots on the wrong feet.

When he was about 11, I read The Secret Garden to him.  I made no secret of the fact that this was my favourite book too, but he was happy to indulge.  His Dad would pop his head round now and again to snigger at Dickon, and younger son declared my Yorkshire accent sub-standard, but we were happy.  Much like Alfie, it’s another story about the magic of the real world, rather than the made up one.  Of all the fictional characters, Dickon was definitely the best, a boy with an easy charm who belonged to the outdoors.

“As she came closer to him she noticed that there was a clean fresh scent of heather and grass and leaves about him, almost as if he were made of them. She liked it very much and when she looked into his funny face with the red cheeks and round blue eyes she forgot that she had felt shy.”

Since Fred died, books have been my solace.  In grief, some people say they can no longer read, but I have felt the opposite.  Reading is pretty much all I can do.  Sometimes it’s good to be taken somewhere else, and easier to read other people’s stories, even if they are similar to your own.  Fred and I were similar in that we never really liked fantasy; you can keep your Middle-Earth.  Even our favourite Roald Dahl was Danny Champion Of The World.  There is a truth to be found in the every day that’s hard to recognise on your own. It’s the real world that needs cherishing.

Stories end but they leave something behind, that is to be treasured.  

Getting away with it

There is a character in LA Confidential called Rolo Tomasi.  One of my favourite books, a nice counterbalance to Daphne Du Maurier, it’s a brutal crime story of police and political corruption, and a triumph of the broken and flawed over the venal.  It’s very much a tale for our age.

Rolo Tomasi doesn’t exist. he is the name Ed Exley, in order to process his grief and rage, gives to the anonymous and unfound purse snatcher who killed his father. The guy who got away with it.

Ed Exley:
Rolo was a purse snatcher. My father ran into him off duty, and he shot my father six times and got away clean. No one even knew who he was. I just made the name up to give him some personality.

I think about this scene a lot. I often wish I was more Samuel L Jackson with his great vengeance and furious anger but I wear my rage quietly.

I run around the village and try to think about what it is exactly that I am so angry about. I am angry that my beautiful boy died, I am angry about the things that he suffered. I’m angry about his funeral, and the fact that we had to grieve in isolation. However all of that, whilst true and unfair, is unavoidable. It is what it is.

I’m angry about the Downing Street parties, although maybe not so surprised. There is a part of me that thinks Fred would find all this hilarious. I’ve always been a stickler for the rules. Fred was not. It wasn’t so much about crossing the line, but deftly running with one foot either side of it. He didn’t obey rules he didn’t see the point of, and liked to crash test them. Like Dick Dastardly, he would go to extraordinary lengths to set traps for me to expose the glaring loophole in my instructions and tie me in knots with his logic. He was the kind of boy who, when told not to run in the corridor would do that annoying really fast walking. He would drive me, and his teachers, to distraction on a daily basis and then be so charming that you couldn’t help but forgive him. I think he would find the ‘I didn’t realise it was a party’ inspired and rolled his eyes at my indignation.

So what makes me more angry with this shower of charlatans running the country?

I have taught my children about choices and consequences. You can break the rules, but there will be consequences to that, and double trouble if you are then caught lying about it. This is Parenting 101. Also I taught my children to be kind. I never cared about the paper aeroplanes, or the thrown rubbers or the ‘banging his head on the desk for the amusement of others’ but woe betide him if I found out that he had been unkind to someone else and, as he got older, that he had failed to call out unkindness with his friends. I think the grown ups call it moral responsibility.

We are supposed to be governed by grown ups.

And yet here we have the most powerful people in the land, being the guys who think they can get away with it. They refuse to answer questions, hiding behind reports and official investigations, when they know full well what they’ve done. They smirk like naughty school children outside the headmasters office because the ‘girly swots’ are trying to call them out on it. They make excuses about how hard it is been for them and how gruelling the work is, because for the first time in their career they’ve been snapped out of their drinks receptions and ‘fact finding missions’ abroad. And they are unkind, hurling abuse and lies at people who call them out, minimising people’s grief and fury, telling us all to move on.

The callousness shown both in the actions and their blustering denials and delays has left an impotent rage with nowhere to go. People are angry, and it’s not enough just to be heard. I have spoke on television, and radio, and magazines, and Twitter and to start with, it felt cathartic, but now not so much. Fred is still dead and those who partied and lied are still in power.

Ed Exley:
Rolo Tomasi is the reason I became a cop. I wanted to catch the guys who thought they could get away with it. It’s supposed to be about justice. Then somewhere along the way, I lost sight of that. Why’d you become a cop?

Jack Vincennes:
I don’t remember.

I hope MPs also think about Rolo Tomasi, and the rest of the scene and ask themselves why they went into public life. What morals and values they thought they were there to uphold, as they trot out their ‘gruelling days’ and ‘waiting for the report’. Every MP who has not stood up to condemn the rule breaking, the lies and the unkindness, condones it.

There is a strength in grief and I am lucky to have an army of bereaved mothers alongside me. We won’t move on. Emma, from Live Kindly, Live Loudly and Penny have both ensured that Ruby and Ollie have been talked about in parliament, and we will continue talk about until we have leaders that we can justify to our children.

We fundraise for CCLG in memory of Fred, but all opinions on here are personal and do not reflect the opinions or policies of CCLG.

Feathers

I couldn’t find a feather, there’s never one when you need one. You can’t plan these things, or know where to look. They are not like conkers or pine cones. Feathers find you, carried on the breeze in search of a new home.

People tell me that they are messages from the other side, sent to give you hope and meaning when you are most in need, but surely that can’t be true? Which little bird does my Happy Prince have on his shoulder, ready to offer a gift when the time comes. Or are his pockets stuffed with them, foraged and found, collected in an old pot on the shelf? Are they waiting, waiting to crown the Lost Boys?

No, they are just feathers, cast off by thoughtless creatures when they are done with them, or victims of the neighbourhood cats, random, discarded chaff.

And yet, here is one on my doorstep when I arrive home in the rain. Here is one in the garden while I’m planting bulbs for the spring. Here is another. And another.

Maybe I never needed them before, but just like the thunder clouds, and the rainbows and the purging wind, I’ll take them all.

Ode to earth

You are the one I have trusted my boy to, the only one now who can take care of him, the one who has always taken care of him.

From the moment he tried to eat out of the plant pot, in our tiny earthless city garden, he was always in search of you. We moved 100 miles to find you, to give you to him, never once believing that soon you would ask to keep him.

You lived your lives together, buried under his fingernails, ground into his knees, worn in triumph across his face, clothes, shoes. Now all that remains are faint handprints in unreachable places, fleeting marks on paint to prove to me that once he was here, that I didn’t imagine him.

Now I have given him back to you, for you take him and become better for it, to let him create and nourish everything I see. You allow him to remain my world, and I am grateful to you for that.

My Poor Feet

MY POOR FEET

This was written as part of the Winter Writing Sanctuary . The course consists of a ‘Daily Spark’ in which Beth reads some poetry aloud, and then a writing prompt. This day’s prompt was to stand in the garden in bare feet.

The Daily Spark – new plan. I’m listening to the daily spark with my first cup of tea, in the dark, under a blanket, the dog’s head resting on my leg. My safe space. I’ve listened to it twice because the first time the dog spied a squirrel and suddenly demanded action.

I’ve been distracted by Youtube. I’m listening to Seamus Heaney talk about potatoes and I remember how much I love being read to, and how no-one ever does. Now I’m listening to Katherine Hepburn read a letter to Spencer Tracy, and I must stop before I’m lost to my own squirrels.

To the task. I have to stand outside? What, now? Barefoot? Well I can’t do it now because everyone will be down for breakfast in about three minutes and I think that will spoil the mood. When I walk the dog? No, someone will stumble across the mad woman in the woods and think I’ve finally lost it, or the dog will run off when I’ve only got one boot on. Or both. At work then? No, same problem but worse.

I’ll have a shower then squeeze in a quick two minutes in the garden while Jon is upstairs. The shower is gloriously hot and my feet are not objecting in the slightest to this smooth warm plastic. This is a sensible way to start the day. No, barefoot it is. Virginia Woolf would not stay in the shower, but then look what happened to her. I must find new role models.

I’m dressed. Jon has inexplicably decided now is the time to oil the worktop, whilst simultaneously complaining he’s late. I think he’s still upset about the colander. I sense I should not tell him he needs to hurry up so I can root myself in the garden.

Muppet socks off. They are Fred’s socks, but that’s not weird because he knew when I bought them that I fully intended to share them. Our socks.It’s really cold, maybe I should have done this later.I’ve left my phone indoors. I’ll go back because I probably should put this on Instagram or at least in the Facebook Group. But then people will see my feet, my hideously ugly feet. We’re being vulnerable, it’s fine. Photograph the feet.I’ve gone with the grass. That pile of leaves looks warmer but who knows what the dog has left in there. Not in the middle of the lawn, that feels too exposed; under this tree feels safer.

Tadasana – mountain pose

Although not quite, because the patch of grass I’ve chosen is lumpy. The thick roots of this old tree have bubbled up and tilted me off balance. I should move, but I won’t.

I’m here.

Slowly I can feel my feet as the chill works its way across and up.

My poor feet.

These unloved, misshapen feet. These broken bones that have healed, although still ache in the cold. The strangely long toes which are just like my father’s, and the hard calloused skin which will never be worn away because I was given my Gran’s habit of always being barefoot. My toe nails, half of them rotten, and all of them uncut because no-one ever puts the bloody nail clippers back.

My poor feet.

These feet that have carried me all this time, and have kept me standing. These feet that have paced 3am floorboards and hospital corridors. These feet that have absorbed all of the impact of loss and broken souls, all of the ugliness, drawn it all down and held it for me.

No one who has truly lived can have pretty feet.

The chill feels cleaner, the prickle of life seeping back into them. I feel stronger.

My mountain pose.

I suddenly realise I have no idea how long I have been standing here. The traffic rumbles on and the dog is hiding all his toys under a nearby bush.

Just a few minutes more.

Just a few more breaths.

Anything but cancer – would you know what to look for in your child?

As a mother, I maintained a high level of alert for my children, ever watchful for signs of impending disaster.  With Fred there was an extra level of peril because, like a velociraptor, he was always testing the fences looking for weak points.  Like that time he got up early and made a den by tucking a duvet over the TV, or when he jumped in the pool on holiday as we were getting the bags out of the car. It was difficult to relax with Fred around; he’d never be where you left him.

Also, I was a fairly uncompromising mother when it came to illness.  I was caring and attentive if they were “actually ill” but I did prescribe a substantial course of sleep, water and fresh air before that kicked in.  “You’ll feel better once you get there” was one of my well-known catchphrases.

But when Fred was diagnosed with cancer, I genuinely didn’t see it coming.  Sunscreen was right:

Don’t worry about the future

Or worry, but know that worrying

Is as effective as trying to solve an algebra equation by chewing Bubble gum

The real troubles in your life

Are apt to be things that never crossed your worried mind

The kind that blindsides you at 4 p.m. on some idle Tuesday

It wasn’t a Tuesday, it was a Monday, I was completely and utterly blindsided.  So much so, that I wasn’t even there.

I, like every parent, can recite the signs of meningitis in their sleep: the temperature, the stiff neck, the rash that doesn’t disappear when pressed with a glass.  I know about cutting grapes in half, and how to spot concussion.

Childhood cancer not so much. 

In 2019, there were about 371 total cases of meningococcal disease reported, a number which is decreasing with vaccinations.  In comparison,  around 1,400 children are diagnosed with cancer but would you know what to look for?

So I’m going to talk you through it.  It is painful for me to do, and it is something I have gone over countless times in my head, desperately looking for an exit I could have seen earlier, but there wasn’t one.  

1. Pale skin.

Fred was always pale, he has my delicate Celtic complexion. However, he spent so much time outside, and in the summer his nose and cheeks were covered in freckles, so it was difficult to tell.

2. Feeling tired and breathless

Fred was never tired, or breathless.  But in June 2019 he broke his shoulder in a ridiculous lunchtime Rugby game.  This slowed him down considerably, so his activity levels were not what they would normally have been so it was difficult to spot the change.  Fred’s default setting was about an 11, so if he was less active, no one was complaining, in fact we were all quite relieved.  And Fred had a broken bone so obviously he was going to be tired whilst his body healed etc.

3. Repeated infections over a short time

He didn’t have these.  I’ve always prided myself on my lack of attention to cleanliness and dirt resulting in them having the immune systems of an Ox.  He was never ill. He had chicken pox when he was 5, and the odd cold. That was it. The irony of this is not lost on me.

4. Unusual and frequent bleeding, such as bleeding gums or nosebleeds

Again, if he had these I didn’t know about them.  If his gums had been bleeding I would have probably told him he wasn’t cleaning them properly.

5. High Temperature

Thinking back, he probably did have a high temperature during those weeks, although we didn’t have a thermometer in the house to check.  But either way the feeling didn’t last and I put it down to general end of term ‘rundownness’ (that’s a medical term)

6. Swollen lymph nodes

He did have swollen glands one evening, along with feeling a bit warm.  I told him he needed sleep.  The next day they were back to normal and he was feeling better.  Sleep solves everything. 

7. Night Sweats

Fred had had night sweats since he was a toddler.  He was like an engine that was always running too hot and often when I checked on him at night his hair would be soaking, so this wouldn’t have registered with me.

8. Bone and Joint pain

He had a broken shoulder, so it was going to hurt, and he had grown to over 6 foot in a relatively short space of time.  I’d taken him to A&E years before with what turned out to be ‘growing pains’ and not a fracture, so again, these were easily explained.

9. Unintentional weight loss

This is the one that haunts me most.  Because he did lose weight and I didn’t notice.  I’m his mother and I should have noticed.  But teenage boys change at a massive rate.  He was huge. He had always been a skinny racing snake, but was now significantly broader and stronger – so the whole cycle of growing out then up seemed to be continuing as normal.  And we don’t have scales in the house, and he was a teenage boy, I hadn’t seen him without clothes on for about 2 years.

10. Easily bruised skin

This one made me laugh every time a doctor later asked.  He was always covered in bruises.  He was one big bruise.  Between the skateboarding, the tree climbing, jumping off walls and randomly throwing himself on the ground just for the LOLs, yes he was bruised.  

But about a week before he was diagnosed I noticed some bruises on his arm.  It looked like finger marks where someone had grabbed him.  It was about the same time he said he didn’t want to go to school.  My husband and I had a conversation in bed that night about whether he was being bullied.  It had happened before and he hadn’t said anything, so we agreed we’d keep an eye on him.

That was Tuesday 2nd July.

Wednesday 3rd July

It was a beautiful evening so we decided to go for a walk into the village for some fresh air.  Fred said he was tired and didn’t want to come.  I obviously said the fresh air would do him good and I was worried he was getting depressed about his shoulder and related inactivity.  He refused to walk after a while.  He was an awkward bugger so that wasn’t that unusual (his brother was also complaining) so we left him on a bench while we walked to the end of the lane and back, then we walked home.

Thursday 4th July

He had a school trip.  In another ironic gesture, it was to Birmingham City Centre which we would come to know incredibly well over the next 9 months.  He walked round Birmingham all day but he didn’t eat his packed lunch.  This was unheard of, especially as it contained an entire pack of mini sausages.  After his death, a friend of his sent me a picture from that day.  I’ve looked at it time and time again, to see if I can spot it, to see if I can tell.

Friday 5th July

I had to travel to Bristol for work.  He went to school, but they phoned to say he wasn’t feeling well.  His Grandad picked him up and brought him home and he spent the afternoon on the sofa.

Saturday 6th July

Local Village fete.  We made him go because the ‘fresh air would do him good’ and it would get him out of the house.  That evening, we went to our friends’ house for drinks.  Fred didn’t want to go but I said he would feel better when we got there.  He did.

Sunday 7th July

Fred’s lymph nodes were swollen and he felt rough.  I decided he had glandular fever.  It just so happened that I had tickets to Barbra Streisand in London – I decided to go anyway.  If it was glandular fever, he was going to take a while to recover but for a day or two, his Dad was perfectly capable of looking after him at home and fetching him drinks on the sofa.  That evening, my husband said he had fallen asleep and really wasn’t feeling well.  I remember standing in the queue for the bar at Hyde Park and sending him the symptoms of Sepsis.  Our friend’s son had had sepsis earlier in the year and they were lucky to have caught it, and he had a broken bone so it was a possibility.  We agreed we’d get him a GP appointment in the morning.

Monday 8th July

I was still away in London but made an appointment for Fred at the GP.  Mid-morning, I was sitting in Regent’s Park with a coffee, reading a book.  My husband phoned to say yes, it was glandular fever, and Fred was back at home in bed.  The GP was a trainee and had requested blood tests just to confirm the diagnosis.  I went back to my book, confident that I had not overreacted, and grateful that my husband had managed to handle it all while I was away.  

Later that afternoon, I was standing in Trafalgar Square when I got a call from an unknown number, which I nearly didn’t answer.  It was the hospital.  They had received his blood tests and we needed to take him to A&E as a matter of urgency, although she wouldn’t say why.  She was quite insistent that I should make my way home.  I phoned my husband, and raced across London to get the train, sobbed at the lady at the Virgin ticket counter to change my ticket, and got the first train I could.  My sister was to pick me up from the station and take me to the hospital.

I remember sitting on that hour long journey and staring out of the window.  I told myself that I wouldn’t panic, that I would keep calm and enjoy the view, because I knew, somehow, that life wouldn’t be the same when I got off the other end.  

My husband met me in the hospital car park and told me that Fred had leukaemia.   A normal white blood cell count is between 5 and 10.  If you’re a bit poorly it might go up a little.  Fred’s was over 150 ( It would reach a maximum of over 400).  There was nothing else it could be.

Some days I will myself back on that train, so that I can step off again and be told it’s glandular fever after all.

It wasn’t healing bones, or teenage awkwardness, or bullying, or depression, or growing pains, or glandular fever, or sepsis, it was cancer.

We were admitted there and then, and transferred to Birmingham Children’s Hospital the following morning for treatment to begin.

Acute Lymphoblastic Leukaemia comes on suddenly and Fred’s was particularly aggressive.  Less than 6 months after Fred’s death, Archie Lyndhurst died in his sleep on 22nd September 2020.  It was later confirmed that he too had died of ALL, but had shown no symptoms, or warning signs, and that the onset was so rapid, no-one could have known.  I wept.  I wept for his family, devastated by the loss of their child, and wept for myself, knowing how close we came to losing him overnight.  

Fred would have 9 months of horrible, traumatic, gruelling treatment before he died, but it is still time that I am grateful for.

We will be forever grateful to that trainee GP that requested those blood tests.  Forever grateful for an NHS system that can take us from speaking to a receptionist to chemotherapy in 24 hours, without demanding a single penny from us, or asking how we were going to pay for it.

All cancers are different. Some children wait months or weeks for a diagnosis, some children repeatedly visit their doctor with no answer.  They have different symptoms: lumps, headaches, sickness, anything that means that they’re just not right.

The Grace Kelly Childhood Cancer Trust has produced awareness cards to identify warning symptoms and signs that you should check with your doctor.  I don’t mean to panic anyway, and time and time again these symptoms won’t be due to cancer, but knowledge is everything.

Fred Bennett’s Don’t Look Down Fund is a Special Named Fund for the Children’s Cancer and Leukaemia Group.  We hope to raise awareness of childhood cancer, and raise vital funds to find effective cures and kinder treatments.

Childhood Cancer Awareness Month takes place in September each year.

CCLG, along with many other children’s cancer organisations, marks Childhood Cancer Awareness Month (CCAM) each year in September. While we work to raise awareness of childhood cancer all year round, during September we focus on increasing awareness of cancer in children, as well as the work we do to support children with cancer and their families.

Be Bold. Go Gold. for Childhood Cancer Awareness Month. There are many ways you can get involved and help us to beat childhood cancer.

Still firm in the belief that fresh air, water and sleep are everything, I’ll be running the Great North Run on 12th September.  Click here to donate, or follow our Facebook page to learn more about our fundraising efforts.

Oven Gloves – Advice for the newly bereaved and those who love them

It has been one year and two months since Fred died, and it is my second #NationalBereavedParentsDay.  That seems an extraordinary thing to write,  but there it is.  In that time, I have relied on the strength and grace of those that were bereaved before me, and have seen others follow.  I have also seen people on the sidelines paralysed by fear and impotence.

I am not the only mother who has lost a child, and there will be far too many others. These are the things I have learned.

Grief is physically painful.   People can imagine the emotional toll, but the physical pain of grief and trauma is all too real.  There is a reason why we talk of heartache – it has a literal meaning.  The chest pains you feel, and will continue to feel, is not a heart attack or ‘stress’ but your heart breaking.  The pains in your joints and muscles, and the sheer overwhelming exhaustion is as if every cell in your body is rebelling against this new reality. Your entire body refuses to comply.  

Grief is a brain injury.  I can’t remember where I read it, but it was the most useful thing I read which I try to remember when things feel difficult.  Traumatic grief, or any trauma, rips your world apart and everything your brain has spent a lifetime building is suddenly unraveled.  It takes time, energy and patience for your brain to even start to piece itself back together, and plug-in the wires that have been torn out.  You may struggle to remember people’s names, you may forget conversations entirely, you may even put an unopened bag of pasta in the dishwasher.  You will almost certainly struggle with pub quizzes. Your brain is trying to rebuild itself.  I feel like I’ve taken this on the chin.  I figured that as my brain had erased itself, I might try and rebuild it differently.  I thought I’d replace all that knowledge of 80s sitcoms by learning Italian.  Clean sheet and all that.  This has been largely unsuccessful but you can’t blame a girl for trying.

Take the drugs – or not. Eventually, my GP prescribed anti-depressants. I was sceptical; after all I wasn’t depressed, I was grieving. No amount of drugs were going to make me feel better about that, or bring him back. My very lovely GP pointed out that if something needs fixing, we don’t refuse to just because we know what broke it. I had to admit he had a point. So I took the drugs. The grief didn’t ease but I felt like I could string a sentence together – so I am forever grateful for his guidance. I won’t take them forever, and they are almost certainly repressing something that will have to come out eventually, but I can wait.

Crying is not compulsory.  You may cry all the time, or you may be surprised by how little you do.  You would think that crying would increase exponentially with the grief, but it’s not the case.  I have to be honest and say I cry a lot less than I thought I would.  When I was young, and it was really cold, my Gran would look outside, nod wisely and say ‘no, it’s too cold to snow’  I have no idea whether this is actually a thing, but it feels like a thing.  Grief can be too overwhelming, too all encompassing to allow for tears – they literally won’t touch the sides.  Instead there is a heaviness, an overwhelming sadness that squeezes the breath out of you.  If only crying would help – but it mainly serves to make other people feel better.  They know what to do with crying.  

Find what feels better. All you can do is look after yourself; walk, read, yoga, sleep, watch Say Yes To The Dress on a loop, anything to get you through the day.  Because even when you don’t feel you can get through the day, you will – there is no other choice.  This is your life now and it is hard, and unbearable, but bear it you will.

I’ve found reading to be my salvation, sometimes books about grief, more often not (this has included all the Bridgerton novels, just to give you an idea of range).  I’ve found reading to be a way to escape, of being with other people and living other people’s lives for a little while, before I had to return to my own.  I can’t watch television or listen to the radio like I used to, it seems to require both too much and too little concentration. But lots of people can’t read anything, and that’s OK too.

It’s also OK to not look after yourself, just for a little bit.  I wish there was a way to tiptoe through this, escaping the hail stones raining down, but there isn’t.  It’s resolutely awful and sometimes trying to do the right things to make yourself feel better, then still not feeling better, somehow feels worse. So if you drink too much, eat too much, sleep too much, that’s OK too.  Just try not to do it forever, and know that in the end it won’t change anything.  This knowledge has not stopped me consuming a hastily bought Millionaire’s doughnut from the McDonald’s drive through, so don’t listen to me.  Occasionally, I had a packet of chocolate fingers for lunch. My sister got cleaning and tidying as a coping mechanism, I got biscuits.

Find your oven gloves. Mister Rogers told us all to ‘look for the helpers’ and there is no doubt that these are the people you need in a crisis.  However crises don’t last forever and you inevitably come to terms with the fact that nothing can help. 

Grief is heavy, and it burns.  There are lots of people who don’t know what to do – they arrive, try to touch it but burn their hands and retreat, thinking they’ll wait until it cools down a bit.  Some people grab the closest damp tea towel, which isn’t much use, but at least they know better for next time.  What they need are oven gloves.  There will be people who come armed with the ability to just hold your grief for a while, to not fix it, or try to cheer you, or wait for you to feel better.  Grief is exhausting, and at times really boring, and relentless.  They will turn up anyway, and keep turning up.  Cling to them.

There will be joy

You feel like you will never be happy again.  In so many ways, that’s true.  You also don’t want to imagine a time when you can feel joy whilst your child is still dead.  It doesn’t seem possible, or acceptable.  However you will find moments of joy – just brief ones and gradually they will happen more often.  They will be small, but you will notice them, far more than you ever would have noticed them before, and you will be grateful for them.

I could go on, but I won’t.  I won’t because nothing of the thousand words I’ve written will make any difference to your pain, or take it away or ease it in the slightest.  It’s shit, I’m really sorry. 

Looking for a better way to get up out of bed: The Great North Run

I’m running the Great North Run. It’s 13 bloody miles! That is considerably further than I’ve ever run before and considerably further than I can run at the moment.

The past few years have not been kind to my body. Actually the months of sitting in hospitals weren’t too bad – I got my steps in walking anywhere to get food and would occasionally escape for a short run along the canals of Birmingham. I ate a lot of flapjacks. However to say it was stressful, exhausting and traumatic is something of an understatement, and it took its toll.

It feels like the 12 months since Fred died have been most physically gruelling. No one tells you that grief is so physically debilitating. It is exhausting, which meant that everything was an impossible effort. It is painful, with every joint feeling swollen and sore, every muscle aching. I could go for a long walk but running was suddenly very much above my pay grade. I tried to make sure I still turned up for yoga, but mainly the lying down parts. And there were even more flapjacks, and ice cream, and hot cross buns. I knew that there were things that would make me feel better – sleep, running, eating well – but I was incapable of doing any of them. After 6 months I spoke to my GP who prescribed anti-depressants. Although they didn’t do anything for the sadness, they did make the physical pain better. It was a revelation to me that anti-depressants are good for the knees.

And so here we are, slowly running again. My friend Sarah entered the Great North Run and it felt like a good opportunity to raise some money for Don’t Look Down. I decided to join her. Fred loved Newcastle, and, as he never felt the cold, never missed the opportunity to run into the sea.

Fred is definitely with me on my training. When I was very small and used to whinge about walking anywhere (and I did whinge) my Dad would always say to me “some children would love the chance to walk” and I can hear his voice as I’m plodding along thinking of my lovely boy, and how he’s be rolling his eyes at my lack of speed.

I have his playlist too. There were certain songs that he would play on our many journeys to hospital and these are the songs that accompany me now. They remind me that all this is possible. I have done harder things than this and been more tired than this. This is a mere walk in the park.

So this is the tune that kicks in every time I feel like stopping.

If you’d like to throw a few coins my way, please do on the button below. And if you’re also running the Great North Run (or anything else for that matter) and feel like raising some money, you can do that too.