A friend got in touch recently. She had a friend whose child had been diagnosed with cancer, and was hospital. She desperately wanted to help, genuinely help. She asked me what she should do, what had I found helpful when I was in that position. I was so touched by her question. It’s easy to ask say ‘let me know if I can do anything’ or say that you don’t know what to do for the best but it takes effort and thought to find out.
I relied so much on the people around me during that time. It seems like a lifetime ago now, and also about 5 minutes. There was the initial shock of diagnosis, which led to an emergency hospital stay of about two weeks, followed by 5 months of endless hospital appointments and worry. Finally, a protracted, traumatic 4 month hospital stay, which ended in Fred’s death. That would have been stressful enough, but in the middle of a global pandemic when the world was on fire, it was complicated.
I’ve learned a lot about asking for help, accepting help, and the ways people will find to show kindness and compassion. It’s impossible to list all the ways people came to our rescue, but I thought it might be helpful to share them, just so you can cut it out and keep it on the fridge, should a crisis every arise.
The hospital gift guide
I quickly developed a hospital bag that contained everything I needed. I would return home about every 2 or 3 days and I travelled light (my husband would disagree but let’s pretend he doesn’t). A lot of the things in that bag were not things I owned before then, but became my life savers.
First of all, a power bank. A good one, not one of those lipstick ones. A friend sent me this after my phone ran out of battery when I tried to phone her from the parents room at 3 in the morning. There are lots of plug sockets in hospital rooms but they are mainly around the bed and you feel guilty reaching over the obs machine to charge your phone.
Another friend sent a thermal ceramic cup with a lid. There’s not much to do in hospital except make tea, and you have to have a cup with a lid when walking around corridors. Never mind climate change, there is nothing more depressing or soul destroying than drinking tea out of polystyrene cups. This always makes me smile because my Mum would refuse to drink out of plastic cups, she would have gone thirsty rather than accept one. I was very grateful I could keep to her standards even in times of crisis. Chilly bottles to keep things cold are also a godsend when it’s a long walk to the fridge.
Food. Hospital food is terrible, the canteen is miles away and it’s really boring. What’s more, you becoming incapable of making the simplest decisions like what you want for lunch. Our friends filled our freezer, turned up on the doorstep with Tupperware, baked cakes. I was particularly grateful to the friend who left home made soup and bread on the doorstep. People sent food parcels to hospital, along with food vouchers and Costa Coffee cards. We’ll skip over the cakes sent to the ward which accidentally ended up in the nurses’ break room. I was so furious, after chasing them down from the post room. My husband had to take me to one side and remind me that these people were keeping my child alive so it probably wasn’t fair to begrudge them a bit of cake. BUT IT WAS MY CAKE. I think I’m over it (totally not over it).
Amazon vouchers. It sounds boring and unimaginative, but honestly so useful. There were so many things that we needed that we were able to get delivered straight to the hospital. I was able to get books on my kindle, just random things that we suddenly needed two of, or that we didn’t have at home. Never underestimate the value of cold hard cash. I had to stop work overnight and money was tight. I think that’s probably the hardest thing to ask for, but we were lucky enough to have friends who stepped in without being asked.
Smells. Almost immediately, I became acutely aware of my other senses, I don’t know whether it was connected to anxiety, or trauma or a combination of the two, but I needed lovely things. Smell became very important to me, I had room sprays, pillow sprays, pulse point roller balls and I would cling to them. Somehow if I could smell something lovely, it would divert attention away from all the horror, and ground me a little. The frequent hand washing meant that I got through hand cream like never before.
I also craved soft things. I bought new clothes that were comfortable, some of them fur lined. Someone sent me really nice socks. My most precious gift was a golden blanket given to me, which I slept with in hospital for months, so I could avoid the thousand time wash blue standard issue blankets. It was a small piece of comfort in an otherwise hideous world and later Fred was buried with it.
It really is the thought that counts. The basket left on my doorstep full of little things to make things better – chocolate, vitamin tablets, a little craft thing, made me cry. It means a lot to know that you haven’t been forgotten, even though you are never there and don’t have time to speak to anyone.
There were so many things that people did for us, that we just weren’t capable of doing ourselves, either physically or emotionally. I remember looking out of the window and seeing one of our friends mowing our front lawn, he’d even brought his own mower! Another friend not only arranged for a cleaner to come once a week but also snuck in and tidied our entire garden which had been sadly neglected after a summer of hospital visits. People fed us, did our washing, fixed things.
We were incredibly lucky to be surrounded by people who loved us and caught us. There are so many things, far too many to list.
All of these things don’t even include the emotional support we were given, that will have to wait for another day.
Fred always loved the snow. Not an inch of it went unrevelled, or unrolled in. The days when he woke up to snow were the greatest of joyful gifts. On Christmas morning, he was remarkably patient, or at least capable of quietly eating chocolate and feeling presents until we were ready to get up. But these were the days when the excitement would burst over. The logistics, and negotiations, would begin from the minute he opened his eyes. When he was little, it was how soon he could get out in it and where I had I stored the waterproof trousers. There was also Arthur to factor in, who loved the snow but hated the cold so he was on a time limit. So garden first, sledging later. The hill in our village is top sledging material, but there needs to be careful timing for maximum snow and maximum friends.
As he grew older, negotiations turned to how early he was allowed to call on friends, how long her could stay out and how much he could be trusted to be sensible. I liked to tag along at some point in the proceedings too, partly because I loved the snow but secretly in case I needed to the air ambulance. Eyes bright, cheeks red, jumping up and down with the cold, or the excitement. There was the year that his friends turned up with a tin bath that three or four of them could sit in. Treacherous enough but Fred decided what it really needed was a ramp half way down the hill. I can still hear the squeals as they took off, only to thump back down and keep careering down the hill, with much shrieking and ageing on my part, attempting to sledge down at the same time.
The added glory of these days was that he would return, triumphant, joyful and most importantly, exhausted. Part boy, part labrador, it took a Herculean effort to wear the child out. Running up a hill all day in the snow was just about enough. There is no more satisfying feeling as a parent than witnessing utterly worn out children.
And so now, what of the snow? We awake to see the ground covered and the flakes still falling. It’s crisp layer only seems to amplify the silence in the house, a soft blanket of sadness. Arthur is excited, of course, but in his own way that takes everything in his stride. He’d already quietly arranged to go out with his friends and it would be business as usual until that time came.
These are the days that hit us the hardest, not the big occasions and festivals that we brace ourselves for non in advance, screwing our eyes tight and holding our breath until they pass. No, these days, that were once an unexpected delight are now a blow to the back of the head.
There is a sacredness in the snow, just as there always has been. For just a while, everything is clean, and simple and quiet. It soothes me to know that we embraced every school closure, every cancelled plan, every excuse for hot chocolate. A day of snow is a day for things to come to a screaming halt and lean into the knowledge that these moments are fleeting and precious, that the world can wait awhile. The snow comes, but soon it will melt away, or turn to ice or mud or somewhere in between.
So for now I walk early in the morning, before the sledgers are out, but late enough to see the paw prints, when the sky shifts from a watery wisp to a celebratory tropical blue., when the sun is beautiful even though it doesn’t have the strength it will one day have again.
I build Fred the world’s smallest snowman by the cross that marks his grave, and try and rescue the frozen tulips. I breathe in the icy air, hoping that the shock of it will dull the pain in my chest, or at least give me another excuse for it.
Because the snow is here, and the world can wait.
“It’s coming on Christmas
They’re cutting down trees
They’re putting up reindeer
Singing songs of joy and peace
I wish I had a river I could skate away on”
Joni has been my Christmas tune of choice for a while now. Not for me the shrill & grating Slades and Wizzards. I mean there’s George, obviously, that goes without saying, and Buble will always get a free pass.
However it has to be said that I’ve always preferred my Christmas in a minor key.
Christmas is so often about the gaps, the ones we try and mask with tinsel and hope that the dim light of the tree means we can’t see too clearly what is missing: the people we have lost, the life that we ordered. We sit in stillness hoping that the smell of Christmas spruce and spices will let us take stock, to see what we have and honour what is vital.
And yet, how do we begin to honour the gaping wound that has been torn in our lives. It is too soon for melancholy, we can’t take care of our scars when we are still bleeding.
We will do what we can. I pick through the ornaments for the tree, things that I took from home when my mother died so she would always be here at Christmas. Alongside those, the ones I bought every year for my children so that, decades from now, they could take them to their own homes – a piece of me and my love for them.
So many tiny gestures and traditions that would be my legacy.
It wasn’t supposed to be this way. They were supposed to be memories of me, not of him.
Everything is out of place.
Yet we make decisions, picking our way through hoping to find a path with the least thorns to snare us.
Two stockings hang by the fire but only one will be emptied with relish on Christmas morning. We will cook pigs in blankets, his favourite, but we will only need half as many. We will leave a trail of golden coins down the stairs but he won’t be up before his brother to swipe every other one and eat them before anyone else is awake. His share will be eaten by someone else, or lie in a drawer until about April.
This Christmas, and every Christmas.
I wish I had a river I could skate away on
I’ve known so many Christmas Carols, from The Muppets to Owen Meany.
“Which ghost are you?
Are you the one that reminds me of all that I have lost, who brings me stories and sings me to sleep? The one who reminds me that once there was love with all its fierce strength – that once I was whole.”
She smiles and nods, sitting back in her chair, reaching for a biscuit. “come sit next to me and tell me what story you’d like me to tell. Lay down your head and let me run my fingers through your hair. Sleep little one and rest awhile”
And her hands smell like lemons and rosemary, and feel like they are cared for, because they deserve to be, and because they have important work to do.
But no, you are not her today.
Instead you are the noisy unpleasant child that jumps up and down in front of me. Not my child. Not my funny, lively, joyful boy. Someone else’s irritating little brat who has worked out that exact pitch of noise to make my teeth hurt – the verbal equivalent of a plastic trumpet on the front of a magazine. The child who clambers on top of me, pawing at me so I can’t see what I’m doing, can’t speak, can’t breathe, crushing the energy out of me.
My skin crawls with the closeness and the sticky, sickly breath.”Get off me, just leave me alone.
I need some peace””No” he yells, half squawk, half whine “I don’t want to. Carry me, carry my toys, fetch me a snack, turn on the TV then sit there. No I want that cup, no I want some of yours”
There is no escape, not even the bathroom is safe. This child will never give up, never exhaust itself, never be silent.
Yet it is ghost of things yet to come that I fear the most. The silent one; the one where you sit, frightened, anticipating the scream which never comes.
This ghost with its long, emaciated fingers does not show what might be, it shows what will be, and what will not be. There is no redemption, no Christmas morning where we throw open our windows with relief and shout “God Bless Us Everyone”
What has happened has happened. We will sit in terrifying silence watching flickers of things that cannot be” birthdays, weddings, children, holidays, ferocious rows over inconsequential things and laugher over jokes that were sown decades before.
He cannot show us these things.
These three ghosts are my constant companions now, and I will sit with each in their turn.
This is the place that you have always known, this village, these woods. They remain the same and yet they are forever changed, now you’re not here to sculpt them.
The shop on the corner is still there, but now Liz looks a bit scared when I walk in. The paperboys come to return their bags as I hand over my money for the milk. One of them must be your replacement, but I don’t want to know which one.
The cricket field opposite our house is quieter now, the parties in the village hall are no longer allowed, the village fete that you loved cancelled. I wish I could tell you about the bouncy castles and the face paints and the circus skills, but it all ended when you went away, as if the world knew.
Arthur plays there with his friends now. They roam around just as you used to, but without wheels, or mad-capped schemes or dirt. More sensible I think, more chatting.
Yesterday he got caught in the most horrendous rainstorm which he thought was so much fun – although he had a coat on. It reminded me of the times you tried to catch the snow on your tongue as it fell. Children scoot past on their way to school, their parents chasing them with their book bags.
And now I walk. Not the walks in the book that Dad likes, but by myself, exploring this place I have known for 40 years, but with new eyes. Eyes that are looking for something: looking for you. I climb over the gate and into the woods, but even they are changed. I missed the bluebells this year. Do you remember? The months we spent in hospital were the bluebell months and by the time you were gone, so were they.
But they will be back – and when they are I will go looking for them again, looking for you again, and your taunting face as you run through them, effortlessly avoiding trampling them but looking every second like you might. The muddy bike ramps you found in the woods are still there, but they don’t interest me now. Instead I walk, listening for the quiet. I hear the birdsong, but don’t care what kind of bird it is, and a scamper through the twigs. A rabbit or a squirrel leaps out and I still feel that rush of excitement as I look around for someone to tell. Instead I walk, smelling the damp soil beneath my boots, picking my way through the squelchy bits that you would have leapt over. Instead I walk, further than I have ever walked before, never really sure where I am going and each time, ending up somewhere slightly adrift of where I intended. I find new routes, along with old routes blocked. I walk, looking for gaps where the sunlight can get through.
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.
There’s a poem, that I’ve forgotten the name of, about changing the sheets. It contains a line about the poet’s mother “the smell of clean washing is hers” I think of this every time I change the bed. I use the same washing powder that my mother used to, just for the smell.
When I think of my Dad, I can smell shoe polish, the kind that comes in a metal tin with a tiny lock, that needs a brush. I can hear his voice, admiring the shine and reminding me of the importance of paying attention to the backs as well as the toes, for the benefit of the people behind you. When I was small I used to sit on the floor and take his boots off, releasing the hot dampness of his thick socks.
But what smells remind me of Fred?
This is all the wrong way round, he’s supposed to have things that remind him of me. The washing powder, the shoe polish, the crumble in the oven, the waft of pancakes. These smells can’t belong to him, they are mine to give.
When he was a baby, I would tuck a cloth down my top in the vain hope that it would comfort him and persuade him to sleep. I never needed one in return.Years later, we moved onto my extravagant sleep balms. “Will you do my potions?” he would ask, as I rubbed my prized organic sleep serum onto his forehead, and sprayed lavender pillow spray on either side of his head. Neither of us believed it worked any more than the cloth, except that he had asked something of me and I had given it willingly – the scant brush of physical affection and service that a teenage boy will allow.
There was no cologne to cling to, just a desperate attempt to persuade him to wash. “Your hair stinks!” which would be his final cue to get in the shower, after days of pretending he’d already had one. That fetid, oily stench disappeared along with his hair, and his treatment’s demand for cleanliness. I longed for that smell to return as I kissed the top of his bald head. Now there was a larger target area for me to reach, and he was less inclined to stop me.
It was not the only smell that was taken from me – the strawberry milkshake, kept in the cupboard for school holiday treats. It’s synthetic, sickly fragrance (having never seen a strawberry) turned putrid day after day on a hospital ward when he couldn’t eat but needed the calories. Pints and pints were whisked up with extra spoonfuls, no longer caring about the sugar. When I opened the box, months later, came screaming back as a vicious reminder of all that had been spoilt.
Now I anxiously look for new things to fill the space. New perfume, new room fragrances, flowers, anything to fill the things that have been taken, the smell of an empty room.
I know where I live. I know where I live because the signposts and landmarks tell me so, but this is not my home.I remember watching the drama Chernobyl on the TV, before all this happened.
This is where I live now.
My home was full of laughter, and hope. Children played in the park and ran in and out of the houses. Music drifted from the funfair, babies cried, songs were sung.All that has been blown away.
One catastrophic event happening deep down in cells so tiny that scientists have dedicated their life to finding them. One catastrophic, unseeable, unknowable chain reaction that became the destroyer of worlds – and it is all gone.
What is left is outlines, empty shells that stand, reminding us of what has been lost. If you listen carefully you can tell yourself that you can still hear the music from the Ferris Wheel in the distance, but you know that it is just creaking in the breeze.
Everything that you have knew is covered in a thick layer of toxic, devastating dust. You try to tell yourself that there is beauty in it, people try and tell you too, but you know it’s not true. The dust is there to smother the life out of your world and it will take a lifetime to blow away.
You know too, that everything that follows will be forever altered. It cannot be swept away and started again. Everything from this point forward will either flee, or be corrupted, contaminated, damaged. Broken.
And yet I cannot leave, because this is the only home I have ever known, the one where I built monuments to you. I cannot up and leave you behind. And there is nowhere to go. I am forever altered now and that contamination cannot be washed off – I will never be permitted to leave – locked in.
But one day things will begin to grow again. The funfair may never revive it’s tune but somehow, someday, it will be replaced by something fresh and wild. A new monument to you, which will give us life.
Kindness does not give out gold stars, which is really annoying – or badges, or certificates or any kind of recognition that you are doing well at this. It should, because that would really help, but that’s not what kindness is for.Kindness is there to remind you that there is no good way to do this, there’s no magic formula that will allow you to tiptoe you way through this unscathed, like Indiana Jones calculating which steps contain the booby traps.
“You can’t go over it, you can’t go under it, oh no you’ve got to go through it”
Kindness doesn’t care if you’re strong of you’re capable, or an inspiration to others. Kindness is there to watch you do whatever you need to do. It wants you to be mean, and spiteful and full of rage. It wants you to snarl that this is not fair, it shouldn’t have happened, the loss is too great.
Kindness wants you to scream at people as they walk past your door that they cannot hide from your pain, that you will hold their hand in the fire until they burn.You won’t of course, because that’s not what you do, but kindness would let you.
Kindness would let you stay in bed for days, to eat pancakes until you couldn’t face anymore, to do nothing but read and read and read until you forget your own story.
Kindness would let your hair go unwashed and your pyjamas unchanged.None of this will help of course, and will probably make you feel worse, but that’s the point. It’s kind to let yourself do things that don’t help, that aren’t productive, that hurt.
You’re not supposed to cope with this – it is too much. Yes you can walk in the fresh air and eat vegetables and stay hydrated and get lots of sleep and sign yourself up to writing courses. You can talk and write and talk and write but the loss remains the same. Broccoli is not going to bring him back.
Instead, kindness is there to sit in the chair beside you, night after night, knowing that it would give anything to make this better, to take the pain away. It will sit, come what may, to remind you that whatever happens, you will not have to face this alone.
Kindness learnt that from you.