‘We have good days and bad days’, I say, followed by a feigned smile, which suggests that I am trying hard, but finding the answer difficult. It’s just another maxim to help us through. Look, before I begin, please don’t brand me as ungrateful or churlish. It helps to know people care, that we haven’t been forgotten about and that someone has taken the time to ask how we are, but you know, the reality is we are not fine and answering some new random query is, quite frankly, painful. Everything, every day is a traumatic reminder; a particular tree in the park, the colour purple, Yorkshire Puddings, dancing, chicken legs, doggy, dolphins, butterflies, cups of tea, hair, rainbows and sleep dust are all emotional killers for me. The last thing I need is another mnemonic. What I should say, if I were to be brutally honest, is ‘My daughter Verity died of cancer, you have reminded me of that. You have reminded me of my desolation, guilt, contrition, failure and helplessness. How do you think I feel? Now get out of my face.’ That’s the truth.
It is not always fitting to be honest, in spite of what our parents taught us. White lies, was the term my mum used. Just another cliché in a year of platitudes: ‘Sorry for your loss’, ‘I can’t think of anything to say.’ ‘at least she is comfortable now’, ‘everybody dies some day’, ‘there is nothing else we can do’, ‘it’s not fair’, ‘it’s for your own good’, ‘oh she is so brave’, ‘every second counts.’ Yeah that’s a good one Lance, easy for you to say; you survived my daughter didn’t. We shouldn’t be angry, to wallow in selfish and frequently confused emotions. Nor should we forget how many other people were touched by Verity’s brief existence and that they too are hurting. There remains much to be thankful for, even during the worst of times, despite the efforts of remorse and grief to blind us to these.
It’s been a few months since the funeral yet the pain is as raw as ever, no let up. We merely become used to bearing it, at least until we are nudged by a gentle, beautiful and brutal reminder. ‘Daddy when is Verity coming home? I miss Verity. I love her.’ How do you explain the word ‘never’ to a three year old? Daily reminders. Painful as each recollection is, I never want them to stop, I never want to forget and I never will. I am terrified that I ever could forget any one of the many precious moments that I have had the privilege to experience with Verity and I am thankful for every one
That’s Dad. You probably think he’s grumpy, well he can be, I suppose, but he isn't usually like that. He is kind, he loves me and I love him and mum, my sisters and Putney our dog. I love my friends, the nurses that look after me and I love life. My name is Verity and this is my story. I don’t want to be in this story. I want to be in another story with princesses, dragons and knights in armour who will rescue me. I want to grow up, feed dolphins, be a doctor and meet my handsome prince. But that isn’t going to happen because this is a different story and the princess, that’s me, dies. That’s the truth. Sorry to have spoilt the ending for you but you may as well know about it, because I know it, so you can see the story as I see it. I am eight years old and I know that I will not live to be nine, I won’t even make it to Christmas. It’s my eighth birthday soon and I will never have another.
We have gone to a place called Rachel House. It’s a hospice but I don’t understand what that is. My mum and dad do though, I can feel their dread. We have come, on day release from ward 2 (that’s the cancer ward) to see an animal woman. It’s Halloween and there are scary pictures up. I would usually like them, kids like to be scared. I don’t want to look at them now though, they are all about death. The animal woman has rabbits, spiders, insects and snakes. I just want to hug the rabbit, it is lovely and fluffy. My dad likes the snake and it wraps his body around his hand. I make a funny noise at the snake and cuddle the rabbit. Mum takes a photograph. We give the animals back and the lady goes to get some insects. I see that Dad has some sleepy dust in his eye. ‘Sleepy dust’ I say and point my finger very gently into the corner of his eye to indicate where it is. He trusts me so much to do this because I know he his squeamish about eyes.
There is a dragon in this story, but it doesn’t breath fire and have big claws. That would be easy. It is sneaky and hides and nobody can find it, then it creeps up and kills you. The type of dragon is cancer and its name is embryonic rhabdomyosarcoma or Rhabdo for short. Adults know about cancer but I may as well have been told I was being attacked by the cold or chicken pox or warts. The name means nothing to me but I know when the name of the dragon is mentioned it means something to adults because they turn pale or quiet or make a reactionary remark like ‘oh no!’ or ‘Oh my God’. Then I know it’s a nasty dragon.
‘What do we say to Verity?’ I ask the doctors.
How do we say anything? Where do we get the strength to look our daughter in the eye and explain the horror of the truth that one day very soon we will hold her hand and feel the heat go out of it, the muscles stiffen and life evacuate? ‘God wants you to paint rainbows with the angels Verity. They have special medicine in Heaven which will make you better.’ Laura, Verity’s mum, came up with that one she thought it was important to give Verity permission to leave us, to run from the pain, to in other words, die. She is more expressive, imaginative and stronger than I am. I wouldn’t have got past the G. The words of comfort serve as a reminder that our only hope now is in faith, in God the very thing that put cancer on the Earth in the first place. No one could possibly understand the breadth of such themes, despite the scope of rantings from myriads of preachers. Yet this is what we are left with after endless disappointments.
‘There is no right way,’ the doctors tell us, ‘children understand much more than we think. We find it best that they ask when ready. Then usually we would say that everyone dies some day and that you may not live as long as other children.’ Doctors have bromide for all situations.
The Dragon pretended to die. I hate cheats. You play games with them and they deal you a bad hand or fix the dice. It spoils everything. My dragon was a cheat. It pretended to die and we all got on with our lives for a few weeks. I even started school, for the first time in over a year. My tummy went down and there was talk of a holiday. I could eat sleep, smile and laugh freely with little pain. But the dragon was just hiding, resting, growing stronger and it came back.
The stoney faces on the doctors said it all. Two days prior to this meeting I knew the score. I could see Verity’s tummy distended like before. I hoped it was my imagination and prayed that it was something else. But it wasn’t wind or steroids. I am informed ‘It’s not good news.’ The pain in my head is intense from forcing back tears in anticipation of the expected and certain bad news. Verity is on the hospital bed awaiting medication that she thinks will help but she is so far down the path of death that it will not be brought. The pain in my head became immense and intolerable, sharp and unrelenting, preventing any form of sensible probing questioning. I move to speak but can only manage, ‘sorry, it’s hard’ and I put my head in my hands.
‘I know.’ they say. What they mean is they have seen it all before.
‘Time?’ I mumble mixed up with some indecipherable snivelling.
‘Not long. We can give her, what we call second line chemotherapy, which could buy maybe six or eight months. You really need to decide as a family how best to use this time together.’
My head is buzzing; swimming with dolphins, that is what she always wanted to do. Strictly come dancing, yes we will go there. What else could we do for her to make the last few precious months bearable for us and fun for her? The thought processes were academic, Verity died in less that six weeks. The scheming, devious, odious killer returned with a vengeance. Our next stop wasn’t to be the Mediterranean or the dance floor but the children’s hospice in Kinross. How do you get that into your head and accept it as your future?
‘I’m sorry I have to go.’ and I leave the room and hospital. I shed some lonely tears
We go home in the car. Dad is quiet. He helps me into the house and onto my spot in the sofa, turns on the fire and television. I didn’t get my medicine today but I feel worse than yesterday. I don’t know why it wasn’t brought. My dad sits with me and we watch Tracy Beaker. He usually laughs with me at Beaker but he just sits and stares. Mum has gone to the shops for eggs to make Yorkshire Puddings for me. My medicine makes my taste buds go funny, Yorkshire Puddings are the only thing I will eat this week. Last week it was chicken legs. I ask Dad for something to drink and he leaves the room and returns with a pot of tea and old fashioned china cups. I love tea in a tea pot, I can pour it the way I like. Dad tries to say something but can’t. Instead he sits beside me and tickles my shoulder and I cuddle my Doggy. I don’t know what they are supposed to tell me, perhaps they think I can understand things without being told, maybe they think it is better if I don’t know. I never asked and they never said, but I know all right, just like I knew when they thought I was going to be OK.
Sometimes this type of dragon can be killed. My big sister, Nina, asked mum. ‘Has Verity got the dying sort of cancer?’ ‘No,’ mum says. Mum was right, at the time. ‘The doctors have special medicine.’ ‘A bit like a knight in shining armour?’ I ask. ‘Yes it is.’ That was before we knew the dragon had won. My knight turned out to be made of plastic and Prince Charming was fooled. First the wrong one came then the second didn’t kill the dragon, he wounded him a bit but that’s not helpful. If Dragon Rhabdo doesn’t die the first time then I do. Nobody told me what would happen, I worked that out, just by looking at the faces.
‘Laura I have spoken to Verity’s doctors. They wanted to tell us that they think the cancer cells have died. We still need to do the radiotherapy and they haven’t tested everywhere, they couldn’t, but the results look good, so far.’
We allowed ourselves a 1/2 bottle of champagne, courtesy of Great Gran’s legacy. She would have approved. Over a meal we chatted about possible holidays. Close enough to return without fuss if an emergency arose but far enough to make it exciting. We talked of removing Verity’s tubes and of her learning how to swim. She can go back to school! Verity is starting a new school. She hadn’t been to school for the best part of two years, this is momentous and we both feel a great lifting of spirits. We don’t communicate this to each other, we don’t have to but somehow know that we are feeling the same gush of pheromones. Monday morning came and we took a photograph of Verity in the new school uniform, little hat crocheted by Nana on to cover Verity’s short hair, which had begun to grow back. A smile as wide as you could imagine said everything, ‘I am happy to be alive, I love the feeling of being well, I can’t wait to go to school, I haven’t felt like this for years, I am alive and I am overjoyed because of it.’
‘I believe Verity had forgotten what it was like to be feeling good.’ Laura said. She wipes a tear from the corner of her eye.
I remember the anxiety I felt starting a new school. Fears of people I didn’t know, of new teachers and lessons, dread of the unknown, worry of being teased perhaps a little excited but I was terrified. Yet I didn’t have tubes coming out of orifices, natural and manmade, I didn’t have to be pushed into class in a wheelchair. I had full natural hair. I was a normal child, yet terrified. I hated my weakness and that fed my pride as I watched my little girl, with every conceivable obstacle in front of her, yearning to see what the new day would bring, what the world has to offer, brave, optimistic and excited. Nothing could stop her.
Today everyone is smiling and I feel good. Maybe the dragon is dead. I had a week at school and was happy, really happy. We had a little party. Not a fancy cake and hats with lots of people party, just my mum and dad and sister Nina. There were no invites, it was unplanned. ‘Spontaneous parties’, my dad used to say ‘are by far the best.’ My little sister Isla had gone to bed. I love my Isla but she was sleepy. We had walked on the beach. I didn’t want to go at first but it was great. I climbed rocks and dad was scared in case I fell. I told him he should be more adventurous. We had a fondu and stayed up late. I smiled for photographs instead of making funny faces. My mum and dad will never forget tonight. They had hope. If they didn’t have hope they wouldn’t have tried so hard for so long.
‘I don't want a tube in my nose.’
‘They are going to put a special wiggle into your chest so that medicine can be given which will help you.’
‘I am not having a tube in my nose.’
‘We will see what the doctors say, Verity. Now let’s get ready to go.’
The complaint didn’t last long on return from hospital but it was severe in it’s intensity. Verity had to have a nasal gastric tube, there was no question about it. When she saw it she ran and hid; her way of protest. Verity was an expert at hiding, she could become invisible, hide in the smallest of places. It used to anger us, but how much can one little child bear? In one week Verity has had to cope with understanding that she has cancer, that she has to have a permanent line into her chest and a tube sticking out of her nose, that she has bloated to obesity through use of steroids and tumour growth and her hair has all but completely gone. As parents there are numerous words to describe how we feel, vulnerable, chilled, daunted, terrified, horrified, distressed blah blah blah, all worthless drivel, words without any useful meaning; for us anyway. It is impossible, no matter how hard we try or how many distressed related adjectives we know, to describe how we feel, to be empathetic. We will never come close to understanding how Verity feels nor how she drew the strength of character to be laughing well before we are anywhere near to coming to terms with the situation. She is the most stunningly beautiful little girl in the world and every one who knows her then, knew she was and no amount of plastic cancer weaponry would persuade us otherwise and I guess she knew that.
Yeah, of course people would stare, stupid or ignorant people. I noticed them, we all did, but Verity, well, she stared them down, fearlessly and unwavering. She inspired me every day with her strength.
I never before believed in the inconvenience of Christmas. It has always been a time of joy, happiness and togetherness. I love my family and when they all gather it is a time for japes, drinks and fun. This year the priority is to entertain Verity, to make her feel special in the vain hope that somehow recovery is stimulated by love and affection. It’s not that simple though. The drugs have Verity in extreme mood swings, a wanting for unusual and often unobtainable food, violent bouts of nausea and often a need to be alone. Our attempts give us separate lives. Nina and Isla must feel they have been sidelined, but they have never complained. They must have felt it though, I did, I would in their shoes. What can we do?
‘Go away!’ I shout at the nurses. Their medicine and tests and questions are annoying. ‘It won’t help me. Leave me alone.’ My mum and dad come to visit, but they have brought others. I don’t want to see anyone. My hair has fallen out, the last bits lying all over the bed, there are three machines with sour smelling liquid feeding my veins and I look and feel bad. The nurses all wear rubber gloves in case they touch the liquid. I don’t want to see anyone.
‘Wee Ben has come to visit.’
‘I don’t care, leave me alone. I don’t want to see anyone.’ I hide under the covers and they bring Ben in anyway and Nina and Ben’s mum. I hide but eventually come out from within my shell and hug Nina and Ben and before long we are colouring and playing happily as if nothing was wrong.
‘The news is not good, I am afraid. Verity has a tumour in her abdomen. We don’t know the origins of it or what caused it. There is no way of knowing.’
We both sit in silence. It was not a shock as we knew or perceived the worst. In a way I felt for the doctors and how they cope emotionally with providing bad news every day. It must be compensated, I guessed, by providing good news to others. More questions and answers, more coming to terms, more explanations, more treatments, new doctors, new diagnosis, new fears and anxieties. It’s nearly Christmas and chemotherapy is to start on the 23rd December. How do you be upbeat for your children with this?
‘Verity guess what? Father Christmas is coming early this year. We are going to have Christmas tomorrow and Nana and Pop are coming.’
‘Nana, Pop’ she says and smiles enthusiastically but weakly.
‘We have to take you to hospital tomorrow and they have a Christmas party. Two Christmas’s for you Verity. Wayhey.’ I should have got an Oscar for that one. Depression, guilt, deception, hope, optimism, dread and terror all hidden behind a mask of buoyancy. It must have been a big veil because there was a lot more concealed behind it.
It’s bedtime and Laura is reading to Verity ‘The Five Find outers and Dog’ by Enid Blyton. That’s Verity’s favourite story series. She could read it herself but that’s not the same, is it? Laura called me up, she is in tears, Verity has fallen asleep. She hands me a homemade card, it says: ‘Dear Father Christmas, For Christmas this year can I have medicine to make me better? Love Verity’ I don’t know what to think or say. So many children with pages of requests, please surely Verity could have her one. You will get medicine Verity but...I pause my thoughts there and feel guilty at having begun negatively, of course it will make her better, modern medicine and all that. I had to convince myself of that, I had begun to loose faith but hope clung on just as it did with Pandora.
‘I hate medicine.’
‘But it will make you better.’
In retrospect our comments are ignominious and bring unnerving feelings of shame, defended weakly by our claim that we did our best, or we followed the advice of doctors. It wasn’t their fault they prescribed drugs in accordance with protocols based on clinical and invasive operations. They weren’t wrong nor were we, but that doesn’t help does it? Every day the battle of the medicine began at seven A.M. and didn’t finish until bedtime. We were determined about it and fastidious to the extent that relationships between parent and child became stressed for a period, relieved temporarily until the next dose was due. We gave in to Verity’s objections when the gap between strain and fun squashed fun out of the equation altogether. In the end she was right.
‘First they gave me the wrong medicine. I knew it didn’t work, it made me feel sick. I gradually forgot what it felt like to be well, normal like other children. I grew to reluctantly accept that I was the ‘special needs’ child I was described as. I wasn’t always like that and I always believed I would be normal again.’
‘Party, party, party.’
There is great excitement in the house. ‘Who are you going as?’ I ask Verity
‘Rapunzel, Daddy. Will you brush my hair?’
‘Of course I will.’ At some stage in life little girls loose their hatred of hairbrushes. Verity now loves to groom, she adores her long hair which reaches all the way down her back. It was washed the evening before in preparation for Kate’s birthday party and it glistens in the sunlight coming in from the kitchen window.
‘My hair is as long as my bottom,’ I joke and giggle, throwing back my head in the process and Dad has to start brushing again.
‘You are right there Verity,’ and I pull a length of hair straight and sure enough it goes past her coccyx, ‘it is as long as your bottom.’ She giggles again. Bottom is a funny word and grown-ups should not forget that.
Despite the recent hair wash, the brush pulls on little knots making tiny clicking sounds. I have to take the strain close to her head so that it doesn’t pull too much on her scalp. She has beautiful, thick, long, chestnut brown hair and it forms a noticeable mass on my left hand. Verity is patient and sits still, waiting for the brushing to finish. She will want it to be perfect, to fly around when she dances, to tickle the other children when she shakes her head from side to side.
‘There.’ I say ‘all done.’
‘Are you sure?’
She checks in the mirror, to satisfy herself that I haven’t missed something, then grabs a gold, diamond encrusted tiara, purchased from the now defunct bastion of plastic bling, Woolworths, and places it carefully onto her head.
‘You make a wonderful Rapunzel’ I say and Verity smiles proudly and candidly, giving a little twirl before running off, her hair bouncing off her back.
‘Do you remember when you were a child giggling so much you can’t stop? ‘Hold your sides’. Adults don’t really do that, not often anyway, but today I did. A jam Jar moment my wife calls them, bottle them up and keep them for hard times. This is one of my jam jar moments and when I feel down or aggrieved or just want to be reflective I open it and shed a tear or two. It happened unexpectedly, I went against my will and with other things on my mind. I even had to drag the children there with promise of a treasure hunt. It was the dogs fault, she needed to go to the park. I had to take her and couldn’t leave Verity and her sisters in house alone.
I had herded the group up to the park. As it turned out the weather had warmed from the morning and the sun was poking its reluctant head out from behind persistent clouds. Just as well because Verity has insisted on wearing only her favourite purple dress, no coat. I had carefully hidden chocolate covered toffees in knots in tree trunks and behind stones in the wall. Nina and Verity had vowed not to look but there was a spy in our midst. As they went about the process of hot and cold their little three year old sister Isla had watched me hide them and retraced our footsteps. She quietly stuffed all four chocolates into her mouth. We found her sitting in the mud face plastered in chocolate and teeth stuck together with toffee. Verity looked undecided as to whether to scream or laugh. The laugh won over.
‘Did you find the sweets?’ I asked and ran over and gave her a friendly tickle.
‘Uuugghhh’ she says and shakes her head, words failing to by pass the toffee. Isla was clever enough to lie but not aware of the obvious. We all crease up and giggle uncontrollably. Mum arrives smiling. We hug and the girls run about.
Mum comments, introspectively ‘What would we do without them? Look at those children and oh to think of anything happening to them is ... too much to contemplate.’
I agree with her, then wonder why at the happiest of moments we sometimes worry of the worst. It’s unsurprising I suppose; the simplest and most natural of things make us really happy but they too are the most fragile and unpredictable.
‘My Daddy my Mummy.’ shouts Verity and runs and hugs her mum and me. Always loving, always genuine and the feeling of emotion within me is overpowering. I wish I could bottle that. ‘Every second counts,’ that’s the truth.