Am I still allowed?

053  This evening I was driving back from work, and there was a programme about New York on the radio. I spent a student summer in New York working close to Battery Park, a part of the city that was devastated by Hurricane Sandy. A man interviewed was talking about how people died in the huge tidal surge, which in turn started me thinking about the tsunamis that have claimed lives and how it would feel to lose your child in that way. Would they be frightened?

Was Juliette frightened when she died? I don’t know. Medics were trying to save her and I was standing at the other side of the room with Steph, helpless. She had been conscious a few minutes before or at least, she had opened her eyes. I spoke to her. I could have told her not to be frightened, that I was there and that I loved her. Instead, everything I said was nonsense. I didn’t know they were the last words of mine she would hear. Thinking about this on a five-minute car journey, I cried.

I have had more than ten years to meet other people who have lost children, most of them more recently than me. Remembering how I used to feel when Juliette first died, I try to present a hopeful picture of what long-term bereavement looks like. In the aftermath of Juliette’s death, the last thing I could bear to know was that it was still going to hurt after ten years.

Of course, the future IS hopeful. I look at my family and I’m grateful for the happiness we have, and while the pain is still there, it is a familiar pain. Any firewalker or bed of nails sleeper will tell you how that works. The point is after ten years, am I still allowed to cry?

No greater agony? Really?

maya angelou

‘There is no greater agony than bearing an untold story inside you,’ said Maya Angelou on my Facebook feed yesterday.

I love Maya Angelou, or at least I love her poetry but this statement made me cross. If containing an untold story is the greatest agony you’ve ever suffered… then wow, you’re extremely lucky. Personally, my insides are bursting with stories I can’t tell but on the other hand, my daughter died.  The agony does not compare.

With my indignant response typed, I hesitated before hitting the return key. It was an invitation for a flaming from her many admirers, and I was not feeling robust enough to argue just why losing a child hurts so much. The pause gave me a chance to think about what Maya Angelou had really meant.

Storytelling is an essential part of what it is to be human. Since we’ve had words, we’ve been grouping them to express the trials and joys of our mortality and the stories we tell of our own lives place a stitch in the vast tapestry of human experience.

Juliette’s life is part of my story, and that part is not untold. Being able to write about Juliette and to share her with other people has been a huge and healing part of my grief.  In writing, I untangled some of the unwieldy thoughts and feelings about losing her. My words say, ‘Look, she lived once, and she was amazing.’ If what I’ve written shows others you can suffer the worst of life and not just survive but find happiness again, then my tapestry stitch is a big pink one. Juliette loved pink.

So perhaps Maya Angelou is right. How much more would I be hurting if I had not written the book?

I do think we are better for expressing ourselves, especially when we have big stuff to say. I see this time and again in prison. Men join the class convinced they have no story to tell. I start by asking them to list ten beautiful words, then ten ugly words, or make a list of places where they felt happy, frightened, inspired or where they felt loved. It prompts buried memories. As their words flow and others respond, the value of their own story dawns on each one of them. They don’t feel exposed because our group’s stories overlap. They feel listened to, validated, released. They make a stitch on the tapestry.

Perhaps never having had the chance to do this before, is the agony of untold stories to which Maya Angelou refers?

Juliette is ill – from Watching Petals Fall

526465_10151300794538549_500805659_nI picked myself up off the floor and went back to the recovery room next to the theatre. Juliette was still wailing, and struggling against the arms stopping her from pulling the Hickman line out of her chest.  Making a conscious effort to compose my face, I went over to where she could see me.  My hand found her cheek, and I slid my fingers into her soft hair.  One of the nurses smiled broadly at me.

‘This is a good sign,’ she said, nodding at Juliette.  ‘She’s angry with us, and that means she’s a fighter!’

Steph echoed these words to me in my many hours of fear and doubt, but right now I realised I needed a game plan.  I was twelve weeks pregnant.  Not, I thought, too late to have a termination.  I would need all my reserves of energy and time to devote to Juliette and a new baby would not allow that.  No sooner had I formed this thought, than I knew that an abortion was out of the question.  My fragile mind might not recover from the guilt, and what if Juliette’s fight was unsuccessful?

Back in Juliette’s room some time later, Dr Nicholson, a young man with a daughter of Juliette’s age, so he told us, announced ‘Good news!’

He explained that there are four main types of leukaemia, but two that generally affect children.  A lumbar puncture showed that Juliette had the ‘best’ one, Acute Lymphoblastic Leukaemia.  We certainly felt good news starved, but we stared at him as blankly as hunger victims. The prognosis was better than with Acute Myeloidic Leukaemia, but it was not exactly our idea of good news.  His efforts to reassure us were heroic, but our daughter still had cancer.

Juliette was very sick after the anaesthetic. When she was not throwing up she lay listlessly in her bed, refusing anything to eat or drink.  Her face had already started to puff up with all the fluid they were putting into her. She looked ill. The previous morning my girl had seemed healthy and normal.  Twenty-four hours later, these doctors had transformed her into a cancer patient.

Steph went home to relieve Emily, our fantastic young childminder, who had dropped all her other commitments to look after Elodie and Pierre. My good friend, Kate, stalwart ally in a crisis, had offered to have them to stay for the time being. I worried about Pierre.  He was a baby, a couple of weeks short of his second birthday and could not possibly understand why one of his sisters and both his parents had suddenly disappeared.

Dr Nicholson put his head round the door again and asked if he could see Steph and me in his office.  He wanted to talk about Juliette’s planned treatment regime. I explained that Steph would not be back until much later. Reluctantly the doctor allowed my mother to take his place, with the proviso that Steph give written permission for any treatment decisions.  NHS procedures had begun to impose themselves over our drama.

Dr Nicholson started talking solemnly about grades of the disease, and about how the initial abnormal blood count level determined the treatment protocol.  Juliette was graded B.  This was not as good as A, but better than C.  At 103,000 abnormal white blood cells Juliette had narrowly avoided being graded C.  He explained that her treatment regime would involve an initial course of chemotherapy, strong enough to get her into remission. Once this had occurred after about three weeks, she could come home.  Follow-up intravenous and lumbar chemo treatments, as well as oral chemotherapy and steroids would last for two years.  I asked the question that I had not even dared consider until then.

‘What are her chances of surviving this?’

An awful hush descended like a blanket on the room.  I felt my mother stiffen as she sat beside me, our senses entirely on the response from the doctor.  At last, he looked at me.

‘About 60%.’

A wall like the blade of a guillotine, fell between me and the rest of the world.  I think my mother started to cry.  For the second time in twenty-four hours I was devoid of emotion and of expression as Dr Nicholson explained that Juliette’s very high abnormal blood cell count suggested that her disease was particularly aggressive. That was why intravenous treatment had to begin immediately.

Many well-meaning friends had reached out to us as we received the news of Juliette’s diagnosis.  ‘More than 90% of children with leukaemia live,’ they told us and for the previous few hours, that thought had been my salvation.

When we returned to her room, Juliette was lying with legs curled up, her back to the door.  She made the tiniest hump in the bed, and looked so vulnerable.   It was not right that she might die.  She was too young, too little, too beautiful.  It was wrong that it was her, and I could not make it me.

Steph was back and held me tight against him as I gave him the news.  I was broken by the crisis, the normal rhythms of life had evaporated. Steph however, was in the grip of practicalities. This should have been reassuring, but I was alienated.  We all needed his strength but at this moment I was unable to fathom how he had been able to worry about our other car or make plans for our dog to be fed.  I needed the whole world to acknowledge our devastation; nothing else mattered as we fought for Juliette’s life.  But by focussing on these practical details Steph’s faith in the solid was shored up, and the sanity on which his family so depended was anchored.  He could not fall apart because I had already done so.

Reluctantly, I let my mother stay with Juliette that night.  Juliette had given a pleased smile when we suggested it and though I hated to leave her, I was worried about Elodie and Pierre.  In this confusion, they needed us too.  My mother persuaded Steph to go with me so that we could begin to make sense of what was happening.

We drove home and collected Elodie and Pierre from Kate’s. With as much conviction as we could muster, we reassured Elodie that her sister was all right.  We explained that Juliette would need to be in hospital for a little while so that the doctors could give her medicine. We described Juliette’s ‘wigglies,’ and what they were used for.  Though our words seemed to comfort Elodie, these child-like explanations only amplified for me the horror of what Juliette was going to be experiencing over the coming months.

Elodie was a mature little girl for her age, and unusually empathetic.  With Juliette she was always extraordinarily patient, a master of diplomacy too when Juliette’s shorter fuse made her lose her temper.  The dynamic between them often reminded me of that between Steph and me.  Elodie would have Juliette playing games that were against her natural inclination, often involving a performance.  Usually this was dancing.  Elodie would make up a dance routine and then teach Juliette, but Juliette was unable to be serious about it for long.  Either she would get bored and refuse to co-operate or should she would rebel against her sister’s discipline and create an exaggerated dance of her own.  Elodie would be annoyed at first but more often than not, the girls would dissolve into giggles. They were opposites on the scale in most ways but, although she had become the noisier one, Juliette hero-worshipped her calmer sister.

At just six years old Elodie had to face some potentially terrifying facts, and she did so with her customary calm and circumspection.  Moreover, she had the sensitivity to try and head off our feelings of guilt for abandoning her and Pierre so we could be with Juliette.

‘We’ll be fine at Kate’s, Mummy,’ she reassured us, ‘and I’ll make sure Pierre doesn’t lose his nightnight.’  Without his nightnight, a bit of quilt from his cot bumper, her little brother could not sleep. I know she sensed that all was not quite as we said, but she had made a conscious decision to accept our version.

That evening after the children were in bed, we tried to talk. We sat grimly, holding hands and staring at each other as thoughts too frightening to express jostled in our heads.

In the morning we walked up to Elodie’s school. The head teacher, Jill, was already in class but the look on our faces was enough for another member of staff to go and fetch her.

We had decided to take Elodie out of school for the remainder of the term, if Jill agreed. My sister Dido and her children were due shortly from America to spend Christmas with us all, and my parents were ready to take Elodie and Pierre to their house in Nottinghamshire. With Juliette in hospital, at least we would know that Elodie and Pierre were happy and safe. We explained this to Jill and despite her best efforts, she broke down. She was desperate to offer us all the help she could think of, and agreed that Elodie could miss the rest of the term.

We took Elodie and Pierre to see Juliette in hospital where we learned that neither she nor my mother had slept well. The saline being flooded into Juliette’s little body combined with the effects of the anaesthetic meant she had wet the bed again, several times. Juliette was ashamed, and angry. No amount of reassurance from the nurses that it was not her fault, made her feel better. She did not greet Elodie and Pierre.

The first twenty-four hours since her diagnosis had taken a little girl and placed her in an environment alien to her. She’d had major surgery and was now connected permanently via tubes to various machines. She was only three, and the look she gave me when we walked into the room was one of reproach. I felt horrible for having left her.

Elodie was bursting with excitement to show Juliette the presents people had given us for her.  Everyone in the community was shocked at our news and wanted to show their support. Juliette lay with her back to us all, unsmiling and unresponsive. In that moment I thought the bouncy, cheeky, laughing Juliette had left us forever and that from now on, she would just be ill.  We cajoled and bent over backwards to try and make her smile, but nothing worked.

A well-meaning nurse came in at one point and said words to the effect of, ‘Come on, Juliette. There’s no need for you to be behaving like that.’ As an aside to us she explained that Juliette’s mood was probably an effect of the anaesthetic. I expect she had known hundreds of children in a similar state but all we saw was our Juliette, suffering.

When at last Juliette accepted a chocolate from behind one of the doors of her advent calendar, eating another illicit one from ‘tomorrow’ with a naughty smile, I tried to stop the tears of relief.  It was advent calendar anarchy over the next few hours. Maybe that amounted to spoiling her, but how could I not?  We were so grateful that a spark of the girl we knew had returned. The lectures about treating Juliette as a normal child so as not to make her siblings jealous and turn her into a capricious monster could wait.

That Monday morning, Juliette started chemotherapy. In the Treatment Room was a large fridge labelled with the words, ‘Danger. Cytotoxic. Chemotherapy only.’  This was where the children’s medicines were kept.  The little people on Ward C2 had substances too poisonous for the rest of us to touch, pumped straight into their bloodstreams. Allowing this to happen to Juliette felt like being persuaded to walk off a cliff, blindfolded, by a stranger you were told to trust.  We wanted to believe they would make her better but in the short term, the evidence was that they had made her ill.

A nurse had introduced us to the lady who ran the ‘home from home’ at the hospital. She promised us a room so that Steph and I could alternate nights beside Juliette. Illogically, my brain protested at the thought we might qualify for such special treatment.  She assured us that we did.

The following days were a blur. Juliette’s treatment took the form of intravenous chemo, one day on and one day off. There were lumbar punctures, steroids, anti-emetics, antibiotics and constant blood tests.

Even after a week, Juliette was showing the effects of the chemo and steroids.  Her hair had lost its shine, looking dull and colourless. Her face was puffy and stretched. She looked poisoned.  Yet through it all, other than the first two days, she still managed to sparkle.

All we could do for her was to be there.  Steph’s company had given him compassionate leave so one of us could always be with Juliette.  In her third week of treatment it was Pierre’s second birthday. He was a hundred miles away, at my parents’ house. I felt guilty, but Steph reasoned that Juliette needed us more.  In any case, surrounded by his cousins and loving grandparents was surely more fun for Pierre than the company of his anxious parents.

After his colicky start, Pierre had become a happy little boy. He smiled all the time, was very affectionate and at two he had almost passed the stage where he saw all objects as mountains to climb.  Having adventure in his heart but without the coordination to manage it safely, he regularly sported a black eye, cut forehead or grazed nose from his latest assault on the furniture. I had often wondered in my PND-fogged brain whether I was going to get a call from social services.

With two daughters and growing up without brothers I found it extraordinary having a son.  I will never forget Pierre’s pre-speech, hyperventilating excitement when we passed a building site full of bulldozers, diggers and cranes.  I didn’t teach him that.

As there were no alternatives on offer, Steph and I began our new lives as parents of a seriously ill child.  In this we had wonderful support from the hospital staff who gave us as much information as we could handle on Juliette’s treatment, but who also offered us a counsellor.

Julie, from the CLIC Sargent charity, was based at the hospital. Steph preferred not to talk, or to talk only to close friends and family. For myself, I found unloading fears to a knowledgeable stranger a huge relief.

It was Christmas even on ward C2, and there was a Christmas tree.  The first time she left her room, Juliette spotted it.  She wanted to sit close to it, and I have an image of her there in her long pink nightdress, tubes snaking from it up to the stand where her saline drip hung. With oversized mauve slippers dangling from her feet, her face broke into the biggest smile.

We held on to happy moments like these, but there was plenty to scare and depress us.  In her first days at Addenbrookes, Juliette was having a rare moment of feeling well enough to enjoy the hospital playroom, when a nurse came in to say it was time to set up her intravenous chemo.

Reluctant to break Juliette’s positive mood, I asked if it could be done in the playroom.  The nurse made a face. ‘We can’t really do that, for safety reasons,’ she said, apologetically.

‘Why?’ I asked flippantly, ‘Would it burn a hole in the lino if it were spilt?’

‘Yes. Pretty much,’ was the chilling reply.

So alien and frightening at first, it wasn’t long before we got used to life at Addenbrookes. Juliette helped. She was sanguine about the invasive attention she was receiving and in the lighter moments, she entranced the hospital staff with her twinkling eyes, jokes and infectious giggle.  She loved the attention this brought her.  Our hearts burst with pride at how well she was coping – and with pain as she endured an illness we had failed to prevent.

After a very short time, watching the electric colours of Juliette’s chemotherapy drip from bags through tubes into her body went from scary to almost commonplace. Daily chats with the doctors on their ward rounds, blood taking every morning at the hands of the tinsel festooned phlebotomists, regular pulse monitoring and blood transfusions became what was normal.

Though this all sounds grim, there were many points when Juliette had fun. She was now on busier four-bed ward. As a newly diagnosed patient, she had the privilege of a single room only until a seriously ill child needed it.  Although it was unsettling to move, I found guilty comfort in knowing she was considered healthier than another child. Juliette loved the bustle of her new ward and adored the attention of so many nurses.

A frequent, welcome visitor in that first month, my mother developed an irreverent game with her granddaughter.  Juliette was permanently attached to a saline drip that hung from a stand on wheels.  At the word of her grandmother, Juliette would climb onto the legs of the frame, hold the pole tightly and my mother would whoop, pushing her up and down the long corridor at a run, while Juliette hooted with laughter.  Of course it was dangerous and irresponsible but it was so wonderful for Juliette’s morale and therefore our own, that staff were kind enough to turn a blind eye.

We had other visitors, most of whom were a happy distraction. The ones who lifted our spirits the most were the friends who brought gossip from the world outside, and laughter. I hope it doesn’t sound ungrateful when I say that however well-meaning, it was less easy for us to cope with our friends’ sadness. We were grateful that our pain was acknowledged. Our situation was awful but we were living it constantly, and what we needed most was to be removed from it for a few minutes.

Acorn House, the home from home, was a godsend.  It was a few minutes’ walk from the ward and a deliberately medical-free environment we could escape to for moments of relief. The need for this is hard to explain unless you have experienced something similar. I would go back to Acorn House to cry, to shower the detergent smell from my skin and hair, to sleep and to talk to other parents in the communal areas. We shared our experiences, commiserated and supported, recharging our batteries, ready to face the stress of the ward again.  My sister, Dani, filled our shelf in the fridge with easy meals from Waitrose. Being able to cook and eat away from the hospital meant that when we had special visitors, there was a relaxed space to spend time with them, and unburden ourselves a little.

One treasured day nearly three weeks into her treatment, Juliette was allowed to leave the confines of the hospital for the first time and pay a visit to Acorn House with us. She’d heard so much about the place from Steph and me and from Elodie and Pierre that she was longing to see it. We dressed her very warmly to keep out the December air, and wheeled her over in a pushchair. She seemed too fragile to walk the couple of hundred metres on her own.

Acorn House was a big, friendly non-medical space that was now awash with Christmas decorations. Although Juliette was cautious at first, Elodie was brilliant at coaxing her sister out of a mood, and soon the girls had a game going in the play house.

Juliette’s hair was thinning; she was pale and puffy and her jumper bulged with the bag that held the Hickman line, but when she started to play with all the Acorn House toys alongside Elodie and Pierre we could forget about all that. So could she. There was not a uniform or a beeping machine in sight, and to see her playing in a normal environment with her brother and sister just like a normal child, was an indescribable joy.

As his sisters played house and Pierre quietly explored the bucket of cars, I was reminded of how I had watched Juliette out of the window that summer day in London.  I wanted to burn this memory onto my retina like I had that one.  How many more memories of Juliette could we count on?

Despite all the success stories, despite all the bright cheerfulness of the medical staff, the spectre of what Juliette’s illness could mean was unbearable. We had to contain our fears to stay positive for Juliette and for each other. To achieve this we focussed our attention on the minutiae from where our eyes could not examine the horizon. We were trapped in a nightmare that no morning waking could dispel.

Cancer.  More patients than ever were overcoming the disease, but it still sounded like death to me.  Our daughter had cancer of the blood.  We had this surreal, abstract concept to get used to and all the while, we were faced with the realities of Juliette’s discomfort, and the emotional cost of adapting to a life we didn’t want.

We clung to good news. Denise Williams, the consultant, came to tell me that Juliette’s latest blood results showed she was in remission. The two of us sat in the ward as Juliette played elsewhere with Steph.  The results gave me courage and I asked Denise whether she thought Juliette would live. Without a second of hesitation, she looked me in the eye and said ‘yes, I really think she’s going to live.’ I dissolved into tears of gratitude, thanking her again and again for her solid faith. It gave me the confidence to keep fighting and moving forward.

Very quickly, the routine of living amongst children with various cancers imposed itself over what we had previously considered normal. Play specialists encouraged the children to cover sick bowls with sequins, and call them hats. Mouthwash sponges for the ulcers all the children suffered from were used to apply paint in daily art projects. Using the accessories of their treatment for fun was no accident. It was to take the fear away.

The play specialists would visit children too ill for the playroom in their rooms, bringing toys or stopping by just for a chat. In this most difficult of environments, the nurses were always good-natured. Doctors lingered with each patient, chatting to them about everything, not just explaining the scary things that were happening.  After a while, they felt like friends.  There were visitors to the ward – one day the local football team, Cambridge United dropped by – and local benefactors sent mountains of sweets and presents to the children.  This special attention was a shock, until we remembered. Our little girl was on a children’s cancer ward.

It is a little shaming, but I believe it’s human nature when you’re faced with horrible circumstances that you work out whether your situation is better or worse than others.  Some of the children who were being treated alongside Juliette had inoperable tumours; they were sickly, bald and had parents who should have been without hope.  We met some inspiring people during our time on C2, who made us feel lucky.  Of course, there was anger and bitterness from some, but there was also hope enough to make the tired spirit soar.

In our first week, we met parents whose four-month-old baby had a brain tumour. Doctors told them that even with surgery he had only a 10% chance of recovery. ‘I don’t believe that’ said his feisty mother.  ‘I think statistics are nonsense, and I’m going to keep caring for him like a normal baby.’

The strength of her normal baby’s chemotherapy treatment meant that she had to wear gloves when she changed his nappy, all of which went straight to the toxic waste disposal area of the hospital.

After the month we spent at Addenbrookes, we did not see that family again.  We never asked what happened to that little boy, because at the time we simply could not risk knowing the answer.  It sounds callous, but the grip on hope for parents like us is tenuous and believing that Juliette would live was essential to every part of our daily lives. We could not bear to learn how that little baby had lost his fight.

The patients’ fridge at Addenbrookes had shelves that appeared to me like little rafts of hope.  One mother swore by the anti-oxidant properties of blueberries, while another family had entirely switched to a macrobiotic diet – anything that would give our child the edge, to be on the right side of the statistics.

As the weeks went on, we were resigned to spending Christmas in hospital.  Our lives had become punctuated by Juliette’s blood tests, results, drugs, temperature and blood pressure monitoring.  We had visits from doctors of all grades, and students too.  One doctor was doing a study on the effects of steroid drugs on growth; others just came to peer at the new leukaemia patient.  However, we were not the new people for long.  There seemed to be new cases every day, enough so that we felt like old hands after a couple of weeks.

We had more visitors. Like a breath of fresh air, my sister Dido and her family arrived from California for their scheduled Christmas visit. My aunt and uncle made a four hour journey from Norwich to spend an hour with us.  Juliette was weighed down with presents, and the cards and letters of support were incredible. Tentatively, we had started to relax, confident that Juliette’s treatment was working. Our faith in the Addenbrookes team could not have been stronger, but then we had this question from one of Juliette’s team of doctors.

‘Do you want the good news or the bad news?’

Oh God.  What bad news could we possibly bear?

‘The bad news,’ I said, automatically.

‘The bad news is that we’re going to miss you when you go home for Christmas!’  It was the 23rd December.

They prepared us for taking Juliette away from the safety of the hospital, but even so, we were worried.  What if her line site got infected?  What if we couldn’t remember which drugs she was supposed to take?  What if she became ill when we were going to be so far away from Addenbrookes?  What if we failed in our basic duty of care?

We were not confident, but they reassured us. In any case they had arranged appointments for Juliette every other day at the Queen’s Medical Centre in Nottingham near my parents over Christmas, and a return to Addenbrookes for chemo on Boxing Day.  The treatment schedule did not respect public holidays.

That Juliette was allowed out of hospital for Christmas at all when it involved a lot of extra hassle for the staff, was one of the first examples to me of how our wonderful health service makes huge efforts to minimize the pain for families like ours.  We were encouraged to make Juliette’s life as normal as possible and they were on hand to help us achieve that.

The darker side of this approach we did not explore at the time, is that Health professionals are well-placed to appreciate just how fragile your child’s grasp on life is.  With a smile, they nurture the conditions that make your time together the very best it can be.

Steph and I packed up and dressed Juliette in lots of warm layers.  As the cold air outside the hospital hit us, we exchanged a look.  We were absolutely terrified, but so thankful too that we could take Juliette away from the place on which she had been completely dependent over the past month.  As we strapped her into her car seat, she looked so tiny and vulnerable. Her white face contrasted with the pink of her warm hat, and her cheeks were even more stretched and puffy.  She looked like a patient, the bulge of her Hickman line bag evident even under all the layers.  She was tired but quietly happy, the smallest of smiles on her lips.  She was excited, but like us she seemed a little afraid.  I think we had all become institutionalised.

During the ninety minute journey, I kept looking behind to check Juliette was OK.  Eventually she went to sleep and I found myself leaning back to check her pulse.  Steph and I talked quietly, and allowed ourselves to relax into the idea of an almost normal family Christmas. Juliette had earned a reprieve.

Steph has always loved Christmas with my family.  My mother is the doyenne of large family events.  When my sisters and I were children, tight finances had meant that for a few years our family played host to foreign language students.  We had Vietnamese, South American and students of other nationalities staying in our lovely, big, but chilly Scottish house.  It was hard work for my mother but as children we loved the diverse and unusual company.  The nicer students would give us biscuits, teach us songs from their native countries and play games with us.  Always however there were huge meals to prepare, and it was a challenge my mother rose to and thrived under.

She loved these noisy and chaotic gatherings, and has always been a superb cook.  For our wedding, she prepared lunch and dinner for 150 people.  All cooked in advance of course and served by waiting staff on the day, but it was spectacular.  Christmas was like that too, though without the staff.  Lots to eat and drink, and my mother at the centre of it all, captaining the family ship amid much laughter.

When we first arrived at my parents’ house, Averham, there was the excitement of the tree to decorate.  They had all waited to do this in case Juliette was allowed out and now we were here, it was magical.  The idea of being here with Juliette had seemed an impossible dream only a couple of days before.  At first, she was distant with the other children, whether feeling fragile or just freaked out to be there after a four week stay in hospital.  It was not long though before she was joining in with Elodie and their cousin, Harry. The sight was medicine for our souls.

At five, Harry was a little younger than Elodie and a bit older than Juliette.  Born in Edinburgh while his father did another degree, he was now a blonde Californian boy. The three of them had a lovely rapport.  Harry’s little sister, Annie, was twelve days older than Pierre.  In fact, we had been visiting Dido in California when we both discovered we were carrying them.  Dido called our mother on the phone, saying, ‘Geves and I have some news.  We’re pregnant.’  It is one of the only occasions we have known her to be entirely lost for words.

It was an exaggeratedly noisy Christmas.  It seemed so important to be normal, and the effort it took to be so, showed on all of us.  We took a lot of photos.  In one of these photos Elodie, Juliette, Pierre, Harry and Annie were all wearing hats, stolen from their grandparents’ hat cupboard.  Strangely, they had all picked headwear that reflected their character in some way.  Juliette’s was a soft and sumptuous fur creation, a relic of the seventies glamour my mother had perfected.  She looked radiant, eyes shining out from underneath the fur and with colour in her cheeks for the first time in weeks.  My beautiful daughter.

We had been allowed to take Juliette away from Addenbrookes, but we were on a very short leash.  She needed a blood test every other day, and at the Queens Medical Centre we experienced a different children’s cancer ward. There were more patients and it was an older building. While the paediatric oncology ward in Cambridge was on the ground floor, in Nottingham it was on one of the higher floors of a tower block.

The staff was welcoming to Juliette, and Juliette seemed almost glad to be back in a semi-familiar medical environment. I knew how she felt.  For me it was reassuring that while the location was completely different, the language and terms were identical. We felt safe.

On Boxing Day, I was grateful for Dani’s company when she came with Juliette and me for Juliette’s long session of chemotherapy at Addenbrookes.  The three of us lay on beds in a semi-deserted ward, watching Christmas films as Juliette received her chemotherapy and afterwards, a transfusion of red blood cells.

We made it back to Essex for New Year, and were joined by my cousin Jo and her family.  Like me, Jo also has two sisters close in age, and we had spent many of our childhood holidays together. The six of us would put on plays, and get up to what we imagined was mischief. Jo and I were at St Andrews University reading French at the same time, where she rolled her older cousinly eyes at my bad behaviour.  Like me, she had married a Frenchman.  She met Sébastien when they were both studying the wine trade in France and together they had overseen the renovation of a lovely French Chateau in the Dordogne, where they now lived.

My aunt, Jo’s mother, had died of cancer ten years previously and Jo’s unconstrained rage and misery when I told her about Juliette’s diagnosis was a huge comfort.  With the best of intentions, many kind people unconsciously brushed away legitimate fears with their talk of hope and fantastic treatments.  Once in a while I longed to see the anger and disbelief I felt reflected in the words of another.  Being afraid is very lonely.

That New Year’s Eve, Jo and Seb’s children played with ours as my cousin and I talked for hours about the unfairness of life, while Steph and Seb drank Bordeaux.