Rose's life was remembered and celebrated on Saturday afternoon at St Stephens Church in Dulwich where Rose had sung her first Christmas carol concerts, her first Harvest Festival services, with over 500 people who loved her. We raised the roof with our love for her through words and music and then we raised the roof for the Bone Cancer Research Trust - a humbling total of £6225 was raised in an hour and still the envelopes are coming in. There are no words to thank all our friends and family who came from very far and very near and gave so generously with their time, their love and their money. We brought Rose back to life for an afternoon and I only wish we could do it all again. Every day.
I miss this blog - I miss sharing every dark and darkly funny moment of the last few weeks, I miss the relief of opening up about our pain, I miss Rose more than is imaginable and I have absolutely no idea how or where we go from here. But we will always remember the love and support we shared on Saturday with so many of you and the memory of it will give us the courage to go on. Thank you endlessly from us all.
PS Several people have asked me if they could have a copy of the tribute read on our behalf so bravely by Andrew on Saturday. I thought instead I would put it on the blog as it seems so entirely appropriate a place to put it. So here it is.
"We have had hundreds of lovely letters in the last few weeks in which many of you have written of your own memories of Rose that I almost wonder if we are the best people to write this tribute – we have to look a long way back to find memories of the really good times with Rose, which seem to be at your fingertips, and to remember her how she used to be before she became defined by having cancer. How to bring her back to life with just words and memories?
When Rose came along in December 2001 we already had Felix who was nearly four, and we were pretty confident that we were excellent parents. We had a baby girl now and we brought her home, over-joyed, and looked forward to being excellent parents - squared. It soon became apparent that Felix was just a very good baby – and that Rose really, really wasn’t. Overnight she turned our ordered lives and Gina Ford routines upside down, ripped up our parenting manual and set about bending the world to her will. We were mostly too awestruck or exhausted to do much in the way of bending it back again and family life was resumed with Rose firmly in charge.
She was soon a two foot dictator in a Disney outfit, clicky-clacky heels and a feather boa and the attitude was seriously scary – in a stand-off with her during one argument I remember floundering, speechless, wondering how on earth to rein back this child of mine. ‘Shall I go to the naughty step?’ she suggested helpfully. She dressed the kittens in Baby Annabel outfits, shut the dog in her wardrobe where she could torture him in private, was pulled giggling from her hiding place in a tumble dryer in a department store hours after we had forced security to close the shop, painted her bedroom carpet in a range of nail varnish colours, ran into the school office at Ducks and threw herself at a ringing telephone ‘Good morning, Ducks, Rose Allocca speaking,’. ‘It’s not all about you, Rose,’ said Simon to her, very firmly, after another domestic atrocity had been committed. ‘Oh yes, it is,’ she shot straight back.
She got a bit bigger, spent a bit less time on the naughty step and started school. Her verdict after day one – ‘it was really fun, thanks, but I’m not sure if I’ll go again’…. Here she worked very hard – less so on learning to read and more so on developing her natural love of the limelight. At the end of her first term in Reception she came home aghast after the casting for the school nativity play had taken place. ‘I am Joseph,’ she announced, desolate. ‘It’s a good part, Rose’, we all tried to tell her but she cried all night and went back to school with an ominously determined expression. That afternoon she strapped herself happily back into the car. ‘I am Mary now,’ she announced triumphantly. Welcome to my world, I wanted to say to her poor teacher.
Never knowingly under-accessorised she would never leave home without an assortment of handbags, lipsticks, hairbrushes, hair slides and compact mirrors for regular checking of her appearance. She averaged several outfits in one day, sometimes several outfits before school and none of them her uniform. Rose commanded every room she was in – friends, cousins, Felix all pretty much fell obediently in line with her games whether it was putting on a fashion show, being a pop star, song writing, den-building, dressing-up, or, the top favourite, marshalling her classroom of Build a Bears in her teaching games. Armed with notebook, handbag, many, many pens, spelling tests and maths questions these stoical bears were endlessly put through their paces by this most rigorous of teachers, so eager to be the grown-up she was never going to be.
And alongside her many crazy games there was so much more to Rose – learning to swim, Justin Bieber, High School Musical, ballet lessons, nail varnish, make up, fashion shows, learning to read, learning to ride her bike, learning to ski – she was full on, fabulous, fearless, funny, a showstopper of a child, cramming every second full of life as if she knew exactly how precious each healthy day was becoming.
And then suddenly, in a heartbeat, in the middle of all this fabulousness she was ill. Not Calpol, day-off-school ill but seriously, heart-stoppingly ill and once again she turned our lives upside down. Surely there had been a mistake, they’d got the wrong child, not our robust Rose, surely this is all happening to ANOTHER FAMILY we wanted to scream at passing doctors but they were all too busy booking chemo, bone scans, surgery to stop. And as we floundered, Rose, with her incredible strength of character, taught us every day how to get through it. We had taught her all the little things in life which now seemed so insignificant – how to brush her teeth, to button her clothes, to cross a road, to ride her bike, to read a book. Now she taught us the big stuff. As we watched her unbelievable bravery she taught us the courage to face every new appalling day, to cope with the terror and the tedium of living on a cancer ward. As she threw herself into hospital life, making friends, charming the nurses, she taught us the importance of seeing the funny side of everything when absolutely nothing is funny anymore. She taught us to have fun whenever you can because you don’t know what tomorrow is bringing, to live in the moment, that the four of us in a room together - wherever it was - was now more precious than all the Christmases, birthdays and holidays we’d ever shared. She taught us that life is randomly cruel, fragile, short but that if you don’t look too far ahead or ask too much it can still be good. She taught us that the love we have for our children – that blasé love we had taken so for granted - is the world’s greatest gift but sometimes you will pay the highest price for it. We stood on the sidelines of her suffering and watched her bear the pain, the fear, the frustration of her illness for so long, in hospital and at home, and we thanked God for her spirit then, for her determination, for the force of her personality. Surely a child such as this one would not be easily overcome.
But she was. In the end.
They told us in the beginning what a rare cancer it was that Rose was suffering from. But how rare can it be when Rose lies in Camberwell Old Cemetery next to Lottie, a bone cancer casualty from her own school, who died last summer. We came to know and care about many children during Rose’s treatment – too many of whom have since also died. So not rare enough is the answer. One can believe in chosen children going to a better life if that is your faith or you can believe in the urgent need for further medical research, more successful drug therapies. Two things would have saved Rose’s life – earlier diagnosis and different drugs. A niggling leg pain that came and went but didn’t stop Rose in her tracks rang no alarm bells for us. But it would now and it will for all of you – raising public awareness about this lethal cancer is half the battle won. The answer to the other half may lie with a new drug called Mepact which has a proven track record in Europe and the US of raising survival rates in osteosarcoma by as much as one third. It has recently been rejected for general public use by NICE and is only available privately in the UK. The Bone Cancer Research Trust plays an invaluable role in both these areas – articles read and written, research projects funded, lobbying and petitioning government on behalf of its supporters and alongside the medical profession to improve the outlook for families to come, to support families today.
Our hearts contract with fear for the families that will be diagnosed this year, this month, this week who will all be just beginning the awful journey that is drawing to a close for us. Journeys that for far too many of them will end in a church like this one with broken families picking up the pieces of their lives. In recent weeks before Rose died we railed against the unfairness of it all, the enormity of her suffering and how we regretted every awful day of it. Of course we know now what we did not, could not know then – that we would go through every minute of it all again for one more day with Rose. We can’t have that day but it’s not too late for the families to come. Every heartbreaking blog on the BCRT website tells a story you don’t want to ever be a part of but you’re all a part of this one and we ask you, shamelessly and with absolutely no pride, to support this charity today and give to the BCRT in memory of Rose. Rose’s cousins will be at the church doors holding collecting tins and there will also be a collecting tray for any envelopes which should be in your order of service – thank you in advance for any donations given, for all the support we’ve had and for coming today to say goodbye to our lovely Rose."
Friday 10th December
There is lots to do and organise - which is helping us all to put one foot in front of another. Rose will be buried on Monday at Camberwell Old Cemetery in a family ceremony but we have now confirmed details for her memorial service. Please put it in your diaries and come - we want it to be a celebration of her life, hopefully family friendly and if you knew her and loved her - or just want to support us - then we would love you to come.
It is taking place at St Stephens Church, College Road, SE21 7HN at 2pm on Saturday 15th January and you are all invited to join us afterwards in the Lower Hall at Dulwich College, College Road, SE21 7LD for tea. We are having family flowers only at the funeral but there will be a retiring collection at the memorial service for the BCRT. The College is about a ten minute walk or a two minute drive from the church and there is reasonable parking at both.
Without all the cards, flowers, letters, messages, food drops and gifts that we have had this week and endlessly in the last weeks, months, years this would have been even harder. The support has been incredible. Thank you all so much.
It is taking place at St Stephens Church, College Road, SE21 7HN at 2pm on Saturday 15th January and you are all invited to join us afterwards in the Lower Hall at Dulwich College, College Road, SE21 7LD for tea. We are having family flowers only at the funeral but there will be a retiring collection at the memorial service for the BCRT. The College is about a ten minute walk or a two minute drive from the church and there is reasonable parking at both.
Without all the cards, flowers, letters, messages, food drops and gifts that we have had this week and endlessly in the last weeks, months, years this would have been even harder. The support has been incredible. Thank you all so much.
Rose Isabella Allocca 27.12.2001-7.12.2010
The post somehow I never thought I would really write.
Our brave and beautiful Rose died in her sleep in the early hours of this morning with great dignity and finally with great calm. The three of us who had welcomed, cuddled and loved her at her beginning with such great excitement at the promise of her life to come were with her all day today at her end, loving her more than ever. She fought it every step of the way and, having never lost a battle in her life, I think really thought she could win. Bless her stubborn little heart.
Tonight she has left home for the last time and it was very, very hard to let her go. She has no need of us now. Ours for her will go on and on. My darling Rose, it was a complete privilege to be your parents.
Rose will be buried in a private family ceremony - details of an open memorial service in the New Year to follow.
Our brave and beautiful Rose died in her sleep in the early hours of this morning with great dignity and finally with great calm. The three of us who had welcomed, cuddled and loved her at her beginning with such great excitement at the promise of her life to come were with her all day today at her end, loving her more than ever. She fought it every step of the way and, having never lost a battle in her life, I think really thought she could win. Bless her stubborn little heart.
Tonight she has left home for the last time and it was very, very hard to let her go. She has no need of us now. Ours for her will go on and on. My darling Rose, it was a complete privilege to be your parents.
Rose will be buried in a private family ceremony - details of an open memorial service in the New Year to follow.
Thursday 2nd December
Snow. Grrrrrr. We planned for this a week ago and it all sounded straightforward but in reality it doesn't work that way. Our palliative consultant - who I have never wanted to see more - attempts the journey on Tuesday and is towed ignominiously back to the Marsden ten minutes in. The community nurses so far have struggled out and we are managing the daily trip to collect iv drugs for the syringe driver but there are delayed deliveries at the pharmacy, a daily anxiety that the nurses won't make it and now, finally, civilisation breaks down completely and Ocado cancel our delivery. The police are briefed for the weekend to collect the community nurses and bring them to our door but it's the Marsden I really want. There was an airy promise of a police 4x4 escort but it hasn't materialised and Rose is abandoned to the care of us and the local nurses who are right on the edge of their comfort zone. There is radio contact and telephone instructions to steadily increase drugs to what the Marsden baldly describe to me over the phone as 'end of life doses' but Rose isn't listening and continues to eat her way through elephant portions of sedative and methadone while maintaining consciousness. Good grief, my lovely, do you want to be nine this badly?
I type this watching her little chest heave with the effort of her laboured breathing and listening to her continual background whimper which is all there is now, day and night, and I whisper to her in my head, give it up now my lovely Rose, this is no good. But I am still drowned out by the much louder and more persistent voice in my head saying please, please don't go Rose - I am so much more frightened of life without you than you can possibly be of dying.
I type this watching her little chest heave with the effort of her laboured breathing and listening to her continual background whimper which is all there is now, day and night, and I whisper to her in my head, give it up now my lovely Rose, this is no good. But I am still drowned out by the much louder and more persistent voice in my head saying please, please don't go Rose - I am so much more frightened of life without you than you can possibly be of dying.
Sunday 28th November
Rose is suffering. There's no other way to describe it - high dose methadone through the driver has improved her pain and less morphine has made her more conscious but it's just a different kind of suffering. Conscious in the wretched state she's in is not what anyone would wish for and the daily rituals and humiliations of drivers being changed, enemas and sub-cut injections given, catheters emptied etc all raise her distress to stratospheric levels. She can't communicate beyond more than a few words so has resorted to a continual low grade moaning when awake. New lumps of tumour appear daily all over her, she has suppurating open sores where tumour has literally pushed its way through her skin - the relentless pac-man march of disease is an abomination, a vile atrocity on her beautiful body. OK, I say to her cancer, you've completely won this, please stop now. Enough.
How did it get to this? I don't know what I was expecting but it wasn't this. Should we have agreed to more chemo for pain relief, let the chemo kill her faster? Would it have done? She would have died on the 11th floor of UCH and not here at home but how many weeks and months shorter or longer would it have been, how much better or worse the quality of life - and for how many years are these questions going to go round and round and round in my head. I can't remember life before her suffering began now - none of us can. Today is the College Christmas fair, yesterday the Frost Fair at Rose's school - Felix goes to both and comes home with Christmas presents for his sister. I can't remember going to these fairs in a time when BCRT tins weren't shaken, when fundraising for bone cancer wasn't part of our lives, when Rose wasn't suffering.
I know I'm meant to feel grateful for every precious minute of these years, that I'm meant to look back and give thanks for the time we've had with Rose. Diagnosis, fracture, three months on a traction bed, nine more months in hospital, six months learning to walk again, endless physio, pain, check-ups, feeding tubes, more check-ups, daily battles at school of frustration, pain and exclusion, more check-ups, more pain, relapse, more tumours, more surgery, more pain, more check-ups, more physio, more relapse, much, much more pain and much, much more suffering. The pantomime of keeping one foot in the real world, endlessly playing at normal for friends and family, trying to raise Felix against a backdrop of will-she-live, won't-she-live, the strain, the agony of it all. I look back and I'm not grateful for a single second. The net result is the same - I'm losing my child and if then and not now how much less suffering would she, would we all, have endured. I'm just angry. In the seven stages of grief that I hear so much about I've crashed straight through shock and denial to anger. I think I might be here some time.
How did it get to this? I don't know what I was expecting but it wasn't this. Should we have agreed to more chemo for pain relief, let the chemo kill her faster? Would it have done? She would have died on the 11th floor of UCH and not here at home but how many weeks and months shorter or longer would it have been, how much better or worse the quality of life - and for how many years are these questions going to go round and round and round in my head. I can't remember life before her suffering began now - none of us can. Today is the College Christmas fair, yesterday the Frost Fair at Rose's school - Felix goes to both and comes home with Christmas presents for his sister. I can't remember going to these fairs in a time when BCRT tins weren't shaken, when fundraising for bone cancer wasn't part of our lives, when Rose wasn't suffering.
I know I'm meant to feel grateful for every precious minute of these years, that I'm meant to look back and give thanks for the time we've had with Rose. Diagnosis, fracture, three months on a traction bed, nine more months in hospital, six months learning to walk again, endless physio, pain, check-ups, feeding tubes, more check-ups, daily battles at school of frustration, pain and exclusion, more check-ups, more pain, relapse, more tumours, more surgery, more pain, more check-ups, more physio, more relapse, much, much more pain and much, much more suffering. The pantomime of keeping one foot in the real world, endlessly playing at normal for friends and family, trying to raise Felix against a backdrop of will-she-live, won't-she-live, the strain, the agony of it all. I look back and I'm not grateful for a single second. The net result is the same - I'm losing my child and if then and not now how much less suffering would she, would we all, have endured. I'm just angry. In the seven stages of grief that I hear so much about I've crashed straight through shock and denial to anger. I think I might be here some time.
Tuesday 23rd November
Where do you go to, my lovely
When you're alone in your bed
Tell me the thoughts that surround you
I want to look inside your head
The Marsden burn up more miles between Sutton and Dulwich and things change again. A little bit more control in a situation I have never been in control of slips away - Rose is put on a syringe driver which drips a cocktail of controlled drugs into her twenty-four hours a day. It means for the first time the community nurses have to come every day to change the driver. It's day two and already I hate it. It's an inconvenient time to have control issues. Now on general anaesthetic levels of ketamine as well as a startling selection of other drugs Rose is still heartbreakingly, horribly aware. Unable to move a muscle and barely able to croak out a few words but she can still cry and call out for us and one or other is continually attached to her hand, continually telling her how much we love her. But I can hardly meet her eyes now for the bewilderment and fear that lie there, for the shame of how completely and comprehensively it feels we have failed her.
Where do you go to, my lovely. Hopefully crabbing, swimming in the sea, driving Andrew's boat, throwing sticks for Ben, riding your bike. Anywhere but here really.
When you're alone in your bed
Tell me the thoughts that surround you
I want to look inside your head
The Marsden burn up more miles between Sutton and Dulwich and things change again. A little bit more control in a situation I have never been in control of slips away - Rose is put on a syringe driver which drips a cocktail of controlled drugs into her twenty-four hours a day. It means for the first time the community nurses have to come every day to change the driver. It's day two and already I hate it. It's an inconvenient time to have control issues. Now on general anaesthetic levels of ketamine as well as a startling selection of other drugs Rose is still heartbreakingly, horribly aware. Unable to move a muscle and barely able to croak out a few words but she can still cry and call out for us and one or other is continually attached to her hand, continually telling her how much we love her. But I can hardly meet her eyes now for the bewilderment and fear that lie there, for the shame of how completely and comprehensively it feels we have failed her.
Where do you go to, my lovely. Hopefully crabbing, swimming in the sea, driving Andrew's boat, throwing sticks for Ben, riding your bike. Anywhere but here really.
Friday 19th November
I sit again in another long, long meeting with the Marsden palliative team. Things have changed again - no longer either asleep or awake Rose is now in some kind of awful hinterland and nothing or no one seems able to reach her or help her. We have almost exhausted our options and my confidence falters - methadone, ketamine, morphine, fentanyl and a variety of sedatives are all running into her dozens of times a day but still she cries out in distress day and night. I feel faintly and bizarrely apologetic that she is not conforming, not responding to the drugs in the way she is expected to, that she has a vice-like grip on staying in the here and now and experiencing every awful second of it, that she's not drifting away with the drugs, letting go, giving up. At the same time I am filled with renewed awe and respect for her - it's her life and every second of it is appalling now but she's still here, still hanging on to it. So completely Rose.
So we 'go up' on things yet again - doses are doubled and trebled, the local pharmacist runs between the GP and his phone collecting new prescriptions, ordering controlled drugs in eye-widening quantities. I am running a crack den but my eight year old is unsedatable. It takes a bottle of liquid sedative to calm her down sufficiently to catheterise her but they bring three and we joke that if it doesn't work we will share out the bottles between ourselves while Rose, Little Britain style, gets out of bed and walks to the loo. There is a black humour in it all because I literally cannot cry all the time but there is also an unspoken 'what next' and I am aware that if I can't manage this on all the drugs I have the only other option may be a level of deep sedation as in days gone by when symptom control was not so sophisticated. Not that it feels very sophisticated just now. And with that rises the spectre of the hospice so I don't bring it up. Instead they talk again about support groups, about Felix, about Simon, about how we are all coping and managing and are we getting plenty of help etc etc. And I want to say, I've got the rest of my life to worry about how we're all coping and it won't be well but for now shall we just concentrate on getting her pain under control?
I know that I am obsessed with keeping Rose at home but her current levels of awareness and anxiety only compound this. As her needs become more personal I can't bear the thought of her being touched, nursed by anyone other than us - an earlier, bungled attempt at catheterising her this week which left Rose screaming and traumatised and me with my head spinning with rage reinforces this. She's staying here and with intervention from as few people as possible for as long as this takes. So at the end of another difficult week - how much more difficult, how many more weeks? - Simon decides to start working from home. I don't put up much of a fight. In fact I shred his suits and cut up his Oyster card before he changes his mind.
So we 'go up' on things yet again - doses are doubled and trebled, the local pharmacist runs between the GP and his phone collecting new prescriptions, ordering controlled drugs in eye-widening quantities. I am running a crack den but my eight year old is unsedatable. It takes a bottle of liquid sedative to calm her down sufficiently to catheterise her but they bring three and we joke that if it doesn't work we will share out the bottles between ourselves while Rose, Little Britain style, gets out of bed and walks to the loo. There is a black humour in it all because I literally cannot cry all the time but there is also an unspoken 'what next' and I am aware that if I can't manage this on all the drugs I have the only other option may be a level of deep sedation as in days gone by when symptom control was not so sophisticated. Not that it feels very sophisticated just now. And with that rises the spectre of the hospice so I don't bring it up. Instead they talk again about support groups, about Felix, about Simon, about how we are all coping and managing and are we getting plenty of help etc etc. And I want to say, I've got the rest of my life to worry about how we're all coping and it won't be well but for now shall we just concentrate on getting her pain under control?
I know that I am obsessed with keeping Rose at home but her current levels of awareness and anxiety only compound this. As her needs become more personal I can't bear the thought of her being touched, nursed by anyone other than us - an earlier, bungled attempt at catheterising her this week which left Rose screaming and traumatised and me with my head spinning with rage reinforces this. She's staying here and with intervention from as few people as possible for as long as this takes. So at the end of another difficult week - how much more difficult, how many more weeks? - Simon decides to start working from home. I don't put up much of a fight. In fact I shred his suits and cut up his Oyster card before he changes his mind.
Thursday 11th November
It's all or nothing here. Rose is still either asleep or in pain but the pendulum swings further in each direction now - the sleep is longer and deeper, the pain when she wakes more unbearable to watch. New drugs are brought into play, old ones that are no longer up to the job are taken out, fresh hopes raised for the holy grail of pain-free, or as close to it as we can get.
It leaves long periods when she lies there sleeping or zoning out, in varying levels of consciousness, when I am at a loss for what to do for her. I long to scrub her - to wash her hair, her body, to take off her flaky nail varnish, the wristband she still clings to from a disco in August when she was last a normal little girl, to dress her in clean pyjamas and dry her hair but she is like a wild animal in pain and won't be touched. Surreptitious attempts to clean under the filthiest fingernails I've ever seen rouse her immediately and wet sponges are smacked angrily away. So I give up on that.
I take ridiculous amounts of photographs of her which I then delete because they are all the same. And anyway they are not Rose and they are not how I want to remember her. So I give up on that too. I could do some Christmas shopping online. And as soon as I have the idea I shy away immediately from the torture of it. I know it's relentlessly drawing nearer - what is to become an annual hurdle is only weeks away but if I ignore it perhaps it will just go away. Where do all the bereaved parents of small children go at Christmas I wonder - good grief perhaps there's a festive support group at Demelza House - or will we still be here pulling crackers over her bed. And how many of my children am I buying presents for. It's all intolerable so I give up on that too.
So what I do instead is I tell her the story of her. Perhaps she can hear me, perhaps I'm talking to myself but I tell her how much we wanted and planned for her, how excited we were, how badly Felix, Daddy and I all wanted a baby girl, a baby sister. I tell her about her birth - she's heard it all before but I tell her really slowly and say all the best bits twice. I go on and on and tell her all the funny anecdotes she loves, about all the holidays we've had, about nursery and starting school, about learning to swim, to ride her bike, about getting Harvey as a puppy, about the Isle of Wight. Mostly I tell her over and over how fiercely we love her, how desperately and pathetically sorry we are for every minute of the last three years, how insanely proud we are of her. God poor child. Not only is she dying and in terrible pain but she's got me banging on and on over her bedside and she can't even get away. At least she hasn't got to read this drivel.
It leaves long periods when she lies there sleeping or zoning out, in varying levels of consciousness, when I am at a loss for what to do for her. I long to scrub her - to wash her hair, her body, to take off her flaky nail varnish, the wristband she still clings to from a disco in August when she was last a normal little girl, to dress her in clean pyjamas and dry her hair but she is like a wild animal in pain and won't be touched. Surreptitious attempts to clean under the filthiest fingernails I've ever seen rouse her immediately and wet sponges are smacked angrily away. So I give up on that.
I take ridiculous amounts of photographs of her which I then delete because they are all the same. And anyway they are not Rose and they are not how I want to remember her. So I give up on that too. I could do some Christmas shopping online. And as soon as I have the idea I shy away immediately from the torture of it. I know it's relentlessly drawing nearer - what is to become an annual hurdle is only weeks away but if I ignore it perhaps it will just go away. Where do all the bereaved parents of small children go at Christmas I wonder - good grief perhaps there's a festive support group at Demelza House - or will we still be here pulling crackers over her bed. And how many of my children am I buying presents for. It's all intolerable so I give up on that too.
So what I do instead is I tell her the story of her. Perhaps she can hear me, perhaps I'm talking to myself but I tell her how much we wanted and planned for her, how excited we were, how badly Felix, Daddy and I all wanted a baby girl, a baby sister. I tell her about her birth - she's heard it all before but I tell her really slowly and say all the best bits twice. I go on and on and tell her all the funny anecdotes she loves, about all the holidays we've had, about nursery and starting school, about learning to swim, to ride her bike, about getting Harvey as a puppy, about the Isle of Wight. Mostly I tell her over and over how fiercely we love her, how desperately and pathetically sorry we are for every minute of the last three years, how insanely proud we are of her. God poor child. Not only is she dying and in terrible pain but she's got me banging on and on over her bedside and she can't even get away. At least she hasn't got to read this drivel.
Thursday 4th November
A week is a long time in terminal illness. It has changed again and the things I wrote only last week I look back on now and it feels like months ago - there's not been much Dr Who or Sarah Jane or Charlie and Lola or sharing anything much with Rose. There's a continual background loop of Disney Channel and I am getting worryingly engaged in whether Hannah Montana makes up with her boyfriend or whether the Wizards of Waverly Place destroy the cafe while their parents are away but no one else in the room cares. Rose is pretty much asleep. The word looks wrong - all the usual connotations don't apply any more. Her sleep is not restorative, it's not recharging her, she will never again wake up, stretch and jump out of bed but it is at least an escape from her conscious alternative which is increasingly pain and distress filled.
Following two days of unconsciousness at the end of last week in which we descended into siege mode and braced ourselves for 'IT' Rose has rallied but with renewed levels of pain and discomfort and with new disease spread that is now challenging even the cool-headed Marsden team. Challenging but of course not defeating. Again they come armed with more and different drugs in the war on Rose's symptoms. New plans, new ideas. I've reached a stage where the rest of the world could fall off a cliff and I wouldn't even notice as long as I still have them. The hospice word is dropped casually into the conversation and I understand now that it's for me not her. But I'm not done yet. I spend the days juggling tablets, liquids, syringes to find somewhere on that fine line between unconscious and pain-free and I realise that it will not be as easy for her as it had seemed it might be last weekend. Rose is eight, she is young and strong and programmed to live for another seventy years. She is metabolising drugs at dosages that would kill me in a heartbeat and still they are not enough. If she was as old, tired and worn out as I am it would be so much easier for her. At this rate Rose's cancer is going to get me before it gets her.
Following two days of unconsciousness at the end of last week in which we descended into siege mode and braced ourselves for 'IT' Rose has rallied but with renewed levels of pain and discomfort and with new disease spread that is now challenging even the cool-headed Marsden team. Challenging but of course not defeating. Again they come armed with more and different drugs in the war on Rose's symptoms. New plans, new ideas. I've reached a stage where the rest of the world could fall off a cliff and I wouldn't even notice as long as I still have them. The hospice word is dropped casually into the conversation and I understand now that it's for me not her. But I'm not done yet. I spend the days juggling tablets, liquids, syringes to find somewhere on that fine line between unconscious and pain-free and I realise that it will not be as easy for her as it had seemed it might be last weekend. Rose is eight, she is young and strong and programmed to live for another seventy years. She is metabolising drugs at dosages that would kill me in a heartbeat and still they are not enough. If she was as old, tired and worn out as I am it would be so much easier for her. At this rate Rose's cancer is going to get me before it gets her.
Tuesday 26th October
I may not believe in God or science or medical progress or in very much at all just now but I believe in the NHS. And I haven't always said that in the last few years. More specifically I believe in the palliative care team at the Marsden. As day follows relentless day and Rose's symptoms multiply I am skilfully led by them further down a path which without them would be unthinkable. In person for the big stuff - more drugs for intolerable scenarios still to come, teaching, guidance, advice, support - and on the phone 24 hours a day for emergencies. Familiar faces, familiar voices, calm solutions. Nothing and no one can help me now or change what's happening, what's still to come for Rose, what's to come later for all of us and even they can't do what they would surely love to do and wave it all away but what they can do is walk side by side with me through it all and every day find ways to make her suffering less.
Increasing pain, increasing nausea, increasing disease - daily changes almost imperceptible to us are slowly eroding Rose. There is more time spent asleep and less energy to enjoy the time awake - the effort involved in setting up a game or playing with her toys leads to tears of frustration as crushing fatigue, nausea or pain stops her in her tracks. Our afternoon routine of lighting the fire, making hot chocolate and watching Dr Who ends more frequently with me realising I am watching alone, closing the laptop and tiptoeing away. Used to filling the room with her personality she still rallies for friends and family - and nothing is guaranteed to revive her more than Felix, her very own Charlie. Charlie and Lola. Lola and Charlie. Felix and Rose. Rose and Felix. Charlie without Lola. Unthinkable.
But still my desperation and selfishness is such that I would settle for this. A Rose who can only totter a few steps, is in pain most of the time, feels sick and ill all the time, has disease in every limb, in her chest and in her brain is still a Rose to me, to Simon, to Felix. While there is life and breath in her I am staving off the devastation to come and so, a non-believer, a pessimist and a cynic, I pray every day for more days and weeks like these to come.
Increasing pain, increasing nausea, increasing disease - daily changes almost imperceptible to us are slowly eroding Rose. There is more time spent asleep and less energy to enjoy the time awake - the effort involved in setting up a game or playing with her toys leads to tears of frustration as crushing fatigue, nausea or pain stops her in her tracks. Our afternoon routine of lighting the fire, making hot chocolate and watching Dr Who ends more frequently with me realising I am watching alone, closing the laptop and tiptoeing away. Used to filling the room with her personality she still rallies for friends and family - and nothing is guaranteed to revive her more than Felix, her very own Charlie. Charlie and Lola. Lola and Charlie. Felix and Rose. Rose and Felix. Charlie without Lola. Unthinkable.
But still my desperation and selfishness is such that I would settle for this. A Rose who can only totter a few steps, is in pain most of the time, feels sick and ill all the time, has disease in every limb, in her chest and in her brain is still a Rose to me, to Simon, to Felix. While there is life and breath in her I am staving off the devastation to come and so, a non-believer, a pessimist and a cynic, I pray every day for more days and weeks like these to come.
Sunday 17th October - for my father
My father died on Wednesday night. He was very old, very ill and it was a long time since he had been 'my dad'. But because grief is not rational or logical that doesn't seem to make much difference to how it feels. However prolonged the illness and inevitable the outcome (no one ran through the door at the eleventh hour with a cure for Alzheimers) the ending is always a shock, always sudden, always somehow unexpected - and certainly unexpected RIGHT NOW DAD...
And so I find myself twelve hours after he dies in an undertakers in Exeter with my mother and my sister having a slightly surreal experience. The very patient man in the black suit answers all my mother's questions and I am surprised by all of them. Does the rest of the world not have a Masters in terminal illness, dying, death, funeral procedures and planning? We choose a coffin, hymns, readings, music my father loved and after what feels like hours it is organised. A long life all wrapped up. We go to see him in the chapel there and he looks fabulously handsome and peaceful and just like my dad has always looked. It is my dress rehearsal - I can look death in the eye and not be frightened by it.
So anyway. My father. He was a dying breed which, used to describe anyone else, is a crashing cliche and used to describe my father is right on the money. He was a true gentleman educated in the most traditional of British establishments and working and raising his family in a similarly traditional way. He was the most unassuming man I have ever met and would be mortified to be the centre of attention in this way and for his death to have coincided so horribly with Rose's deterioration. Always busy and happy he loved life, cricket, his garden, his children and his grandchildren. But he saved most of his love for my mother with whom he shared an old fashioned love story for over fifty years. These are some of the memories and catchphrases from my childhood that have played out in my mind over the last few days which will always sum up my father for me.
'I can see blue sky' Usually in the pouring rain in Devon in August. The term 'blue sky thinking' was surely coined with my father in mind - the kind of eternal optimism totally foreign to me. And potentially incredibly annoying...
'Goodnight, god bless, sleep well, see you in the morning, I love you' - night after night for about a million years as he put me to bed.
'Shall I light the bonfire before lunch?' A man of routine.
'Oh yes, so-and-so, they were an old client of mine...' Literally every company you ever mentioned. Bizarre.
More recent memories of him with my children - bowling patiently to a two-foot high Felix hour after hour, teaching him to play chess, building farms and dolls houses out of cardboard boxes for them both and so on. Top memories, top man.
I have no faith. But how comforting it would be if I did to imagine that my dad has gone on ahead for Rose to wherever they are both going to set up home and get the old place ready for her. In that mental picture he is of course condemned to an eternity of having his nails painted and watching Charlie and Lola and Dr Who with her but with what great gusto he would rise to the occasion.
And so I find myself twelve hours after he dies in an undertakers in Exeter with my mother and my sister having a slightly surreal experience. The very patient man in the black suit answers all my mother's questions and I am surprised by all of them. Does the rest of the world not have a Masters in terminal illness, dying, death, funeral procedures and planning? We choose a coffin, hymns, readings, music my father loved and after what feels like hours it is organised. A long life all wrapped up. We go to see him in the chapel there and he looks fabulously handsome and peaceful and just like my dad has always looked. It is my dress rehearsal - I can look death in the eye and not be frightened by it.
So anyway. My father. He was a dying breed which, used to describe anyone else, is a crashing cliche and used to describe my father is right on the money. He was a true gentleman educated in the most traditional of British establishments and working and raising his family in a similarly traditional way. He was the most unassuming man I have ever met and would be mortified to be the centre of attention in this way and for his death to have coincided so horribly with Rose's deterioration. Always busy and happy he loved life, cricket, his garden, his children and his grandchildren. But he saved most of his love for my mother with whom he shared an old fashioned love story for over fifty years. These are some of the memories and catchphrases from my childhood that have played out in my mind over the last few days which will always sum up my father for me.
'I can see blue sky' Usually in the pouring rain in Devon in August. The term 'blue sky thinking' was surely coined with my father in mind - the kind of eternal optimism totally foreign to me. And potentially incredibly annoying...
'Goodnight, god bless, sleep well, see you in the morning, I love you' - night after night for about a million years as he put me to bed.
'Shall I light the bonfire before lunch?' A man of routine.
'Oh yes, so-and-so, they were an old client of mine...' Literally every company you ever mentioned. Bizarre.
More recent memories of him with my children - bowling patiently to a two-foot high Felix hour after hour, teaching him to play chess, building farms and dolls houses out of cardboard boxes for them both and so on. Top memories, top man.
I have no faith. But how comforting it would be if I did to imagine that my dad has gone on ahead for Rose to wherever they are both going to set up home and get the old place ready for her. In that mental picture he is of course condemned to an eternity of having his nails painted and watching Charlie and Lola and Dr Who with her but with what great gusto he would rise to the occasion.
Friday 8th October
When a girl can't get to the salon the salon must come to her - Rose has been cut and styled, curled and blow-dried, manicured and pedicured and thoroughly pampered this week. Kicking all other well-wishers bearing flowers, food and presents into touch for Rose (not for me - please don't stop) Urban Retreats at Harrods sent us two fabulous members of staff with very busy diaries for a morning of fun. Rose enjoyed it a lot despite being in pain, feeling sick and having a headache. It was a shadow of the experience she would have had of old but it was a great morning and in her new sparkly jeans (never too ill for new clothes) she is looking gorgeous...
It was a very welcome distraction and took the heat off for me for a couple of hours to provide entertainment and pour oil on the million and one troubles that Rose has. She is very challenging now. And I choose that word carefully. Other options that spring to mind include difficult, demanding, mind-splittingly irrational, hideously rude, angry ALL THE TIME and so on and so on. She is more entitled than I can say in words to be all of these things - nothing is right any more because literally nothing is right any more. I am working harder than I have ever worked on my patience, on keeping my tone even and on smoothing over every difficulty but we lurch from upset to upset and by the end of most days I want to either weep, run away or hit her over the head with a mallet.
Refusing visits from her friends leaves her locked in an intense relationship with me but she is too confused/unwell/angry/disorientated to want reminders of the life that she is losing traipsing through the door to look at her. Suggestions of short, local trips for a hot chocolate or to drive to the park are met with resistance, the sudden onset of terrible pain, or a headache and postponed again. I have let her call the shots but she is only eight and a sea change is called for. We need a change of scene, new wallpaper to look at and Rose surely needs a break from a room full of adult visitors all day long - if that doesn't work either then we still have nail art, Sarah Jane Adventures and each other to fall back on. So with that in mind we are going tomorrow to see what Demelza House has to offer us. God help us when a Saturday afternoon family outing to a hospice feels like a lifeline.
It was a very welcome distraction and took the heat off for me for a couple of hours to provide entertainment and pour oil on the million and one troubles that Rose has. She is very challenging now. And I choose that word carefully. Other options that spring to mind include difficult, demanding, mind-splittingly irrational, hideously rude, angry ALL THE TIME and so on and so on. She is more entitled than I can say in words to be all of these things - nothing is right any more because literally nothing is right any more. I am working harder than I have ever worked on my patience, on keeping my tone even and on smoothing over every difficulty but we lurch from upset to upset and by the end of most days I want to either weep, run away or hit her over the head with a mallet.
Refusing visits from her friends leaves her locked in an intense relationship with me but she is too confused/unwell/angry/disorientated to want reminders of the life that she is losing traipsing through the door to look at her. Suggestions of short, local trips for a hot chocolate or to drive to the park are met with resistance, the sudden onset of terrible pain, or a headache and postponed again. I have let her call the shots but she is only eight and a sea change is called for. We need a change of scene, new wallpaper to look at and Rose surely needs a break from a room full of adult visitors all day long - if that doesn't work either then we still have nail art, Sarah Jane Adventures and each other to fall back on. So with that in mind we are going tomorrow to see what Demelza House has to offer us. God help us when a Saturday afternoon family outing to a hospice feels like a lifeline.
Wednesday 29th September
It's busy here - a revolving door of friends and family (good), an endlessly ringing telephone (less good) and an astonishing amount of healthcare professionals on the doorstep (a lot less good). The support is overwhelming and I am grateful and humbled by it - the sad irony of how different it was during Rose's original treatment and how desperately we needed the sort of back-up I have now is not lost on me. I have lists of mobile phone numbers, emergency contact numbers, emergency procedures and familiar voices on the telephone every day - I would have gnawed off my own arm for that two and a half years ago.
Palliative paediatric care is faultless in its thoroughness but right now all it boils down to is exhaustively and exhaustingly updating an endless round of people on the day's symptoms and how I'm managing them. And I'm managing them just fine - Rose is transformed from the little girl who slept or screamed her way through three weeks in Kings. She is up and dressed most days, plays for short periods of time, is enjoying stories and DVDs, back-to-back episodes of Charlie & Lola, re-runs of Anne of Green Gables, being with the boys and her dogs, being at home, being with me. Radiotherapy and pain management has brought her back to us when I thought she would be for ever more in a morphine coma and I need to guard this time with her more closely - the second I am out of my depth they will all be the first to know.
I try to pick my way through the visits from hospices and see what help they may be to us. I'm not convinced just now but maybe later on when things change again and I have desensitised myself to the word hospice it will be different. A woman from Shooting Stars visits - she is a qualified nurse and would administer drugs. My ears prick up. We are eligible for her to come fortnightly for two hours so I can leave the house but Rose stiffens beside me and whispers 'but why do you need to leave the house, mummy?' I realise that I really, really don't need to or even especially want to. Demelza House come out - back in the day when my life was safe I have blithely fundraised to build this hospice. Let's hope they did a good job. They tell me that Rose's case has been to panel and she has passed the assessment. Good grief, I wonder, under what criteria may she have failed? They talk about respite care, daycare, the whole family going for the weekend, the new minibus, the trips to the circus, the sensory room, the water beds and how utterly fabulous the place is. Then they start to talk about end of life care and the familiar feeling that I get of reading a script in a rather black play descends on me. I know it's just psychological survival but it dawns on me how far off taking all this very seriously I still am.
Palliative paediatric care is faultless in its thoroughness but right now all it boils down to is exhaustively and exhaustingly updating an endless round of people on the day's symptoms and how I'm managing them. And I'm managing them just fine - Rose is transformed from the little girl who slept or screamed her way through three weeks in Kings. She is up and dressed most days, plays for short periods of time, is enjoying stories and DVDs, back-to-back episodes of Charlie & Lola, re-runs of Anne of Green Gables, being with the boys and her dogs, being at home, being with me. Radiotherapy and pain management has brought her back to us when I thought she would be for ever more in a morphine coma and I need to guard this time with her more closely - the second I am out of my depth they will all be the first to know.
I try to pick my way through the visits from hospices and see what help they may be to us. I'm not convinced just now but maybe later on when things change again and I have desensitised myself to the word hospice it will be different. A woman from Shooting Stars visits - she is a qualified nurse and would administer drugs. My ears prick up. We are eligible for her to come fortnightly for two hours so I can leave the house but Rose stiffens beside me and whispers 'but why do you need to leave the house, mummy?' I realise that I really, really don't need to or even especially want to. Demelza House come out - back in the day when my life was safe I have blithely fundraised to build this hospice. Let's hope they did a good job. They tell me that Rose's case has been to panel and she has passed the assessment. Good grief, I wonder, under what criteria may she have failed? They talk about respite care, daycare, the whole family going for the weekend, the new minibus, the trips to the circus, the sensory room, the water beds and how utterly fabulous the place is. Then they start to talk about end of life care and the familiar feeling that I get of reading a script in a rather black play descends on me. I know it's just psychological survival but it dawns on me how far off taking all this very seriously I still am.
Friday 18th September
Rose has been back at home for three days and three nights and we are all still in one piece. An ambulance, a Macmillan nurse, seven bags of equipment and drugs and she was finally stretchered in style back to her new living quarters in the playroom on Tuesday afternoon. Where once there was a playroom now there is a fairy grotto and all her worries about not going back to her bedroom evaporated when she saw what we've done with the old place - it is a room fit for a princess. Let her reign begin.
Monday 13th September
Countdown. Another day of meetings - meetings with social workers, clinical nurses, pain consultants, calls to the Marsden and back again and we are inching slowly nearer Alleyn Road. The pharmacist has spent the afternoon trawling through the three page drug chart that is going to become my bible and ordering and ordering and ordering. Scenarios are talked through and prepared for, future symptom control outlined and planned and the combined time, effort and professionalism invested in us by a cast of thousands is humbling.
We spent our year of chemo at UCH and the Marsden dreading every infection that catapulted us into Kings - now I'm not sure I ever want to leave. We are so safe here - safe from coping with the fear and pain of Rose's disease alone, safe from the outside world, safe from me giving the wrong dose of the wrong class A drug... I will be so embarrassed if they go to all this trouble for us and I am back within a day because I am completely out of my depth.
Things that are good about leaving hospital:
We will all be together
The food is better at home - occasionally
No night nurses asking me if Rose would like pain relief when we are both asleep
Alcohol is much more readily available
Things that are not good about leaving hospital:
None of the doctors or nurses appear to be coming with me
We spent our year of chemo at UCH and the Marsden dreading every infection that catapulted us into Kings - now I'm not sure I ever want to leave. We are so safe here - safe from coping with the fear and pain of Rose's disease alone, safe from the outside world, safe from me giving the wrong dose of the wrong class A drug... I will be so embarrassed if they go to all this trouble for us and I am back within a day because I am completely out of my depth.
Things that are good about leaving hospital:
We will all be together
The food is better at home - occasionally
No night nurses asking me if Rose would like pain relief when we are both asleep
Alcohol is much more readily available
Things that are not good about leaving hospital:
None of the doctors or nurses appear to be coming with me
Friday 10th September
Groundhog days. We're still at Kings.
Radiotherapy was done on Monday on another ambulance road trip to the Marsden and she was very brave. A whole day of planning scans followed by a high-dose blast, a cast of thousands interviewing her continually about her pain and endless moving her from one trolley to another was all too much but with matching headaches and matching relief we made it back to Kings that night.
Three days of post-radiotherapy swelling and increased pain were anticipated (oh yay) and along it came. I now know more about nerve pain and the difficulties of treating it than I ever imagined needing to know - my pain management learning curve has been steep and I can now even pronounce most of the drugs that Rose is taking. Which is lucky because in a few days the plan is that I will be standing in my kitchen surrounded by them.
Pain and home have been the topics of the week and the subject of many, many meetings. As I free fall further into the black hole of terminal childhood cancer I realise how many people are/will be involved and it's as overwhelming as it is reassuring. Going home is not as simple or exciting as it sounds and for the majority of the day I look at Rose and wonder how on earth it will work. But Rose isn't actually ill yet - she is heavily drugged to ease her pain but when the pain is controlled and she has slept off the worst of the sedation there are periods when she is still the funny fabulous Rose of old. There is also a new Rose who is angry and frightened and bewildered and I look at her when she is hurling abuse at me and screaming out her frustration and I realise how far behind the curve she is. And that's exactly where I'm planning on keeping her. A new lump appears on her knee and she whispers, terrified, to me 'what if it is something?' 'You've just got tricky bones, Rose,' says a passing doctor with just the right air of casual and she is reassured. There is no right or wrong way. I am told that parents have regretted either too much disclosure or not enough and that only we can decide what is right for Rose - if I'm doing this wrong for you my Rose I am so sorry. I literally have no idea what I'm doing.
There have been lighter moments - 'would she like her enema before or after her Macdonalds?' - and darker moments - 'how long, how long, how long?' - and still far too many moments in pain. But right now she is asleep and not in pain and she has got me and Snuffles within two foot of her and she is ok.
Radiotherapy was done on Monday on another ambulance road trip to the Marsden and she was very brave. A whole day of planning scans followed by a high-dose blast, a cast of thousands interviewing her continually about her pain and endless moving her from one trolley to another was all too much but with matching headaches and matching relief we made it back to Kings that night.
Three days of post-radiotherapy swelling and increased pain were anticipated (oh yay) and along it came. I now know more about nerve pain and the difficulties of treating it than I ever imagined needing to know - my pain management learning curve has been steep and I can now even pronounce most of the drugs that Rose is taking. Which is lucky because in a few days the plan is that I will be standing in my kitchen surrounded by them.
Pain and home have been the topics of the week and the subject of many, many meetings. As I free fall further into the black hole of terminal childhood cancer I realise how many people are/will be involved and it's as overwhelming as it is reassuring. Going home is not as simple or exciting as it sounds and for the majority of the day I look at Rose and wonder how on earth it will work. But Rose isn't actually ill yet - she is heavily drugged to ease her pain but when the pain is controlled and she has slept off the worst of the sedation there are periods when she is still the funny fabulous Rose of old. There is also a new Rose who is angry and frightened and bewildered and I look at her when she is hurling abuse at me and screaming out her frustration and I realise how far behind the curve she is. And that's exactly where I'm planning on keeping her. A new lump appears on her knee and she whispers, terrified, to me 'what if it is something?' 'You've just got tricky bones, Rose,' says a passing doctor with just the right air of casual and she is reassured. There is no right or wrong way. I am told that parents have regretted either too much disclosure or not enough and that only we can decide what is right for Rose - if I'm doing this wrong for you my Rose I am so sorry. I literally have no idea what I'm doing.
There have been lighter moments - 'would she like her enema before or after her Macdonalds?' - and darker moments - 'how long, how long, how long?' - and still far too many moments in pain. But right now she is asleep and not in pain and she has got me and Snuffles within two foot of her and she is ok.
Saturday 4th September
Simon and I sit in a meeting with the Kings palliative care team, the Marsden outreach pain management team, community nurses, and our CNS at Kings and talk about the future. No one mentions the year 4 syllabus, state versus independent, whether or not she should have extra spelling lessons this term, which clubs to do and what options we were considering for secondary. She doesn't have that future any more. Instead they talk about a home visit to assess the house and decide which room to put Rose in. HER ROOM I scream in my head. They talk about hospital beds, commodes, slides to get her in and out of wheelchairs, locked medical 'toolboxes' which the community nurses will have codes to, the legal requirement that Rose is seen fortnightly by a doctor because we will have controlled drugs in the house in order to avoid a post mortem, the fact that Rose's details will be on the 999 system at all times and on and on. Oh my lovely girl, I think, I know you love the limelight but this time I really think you've overdone it.
I drift in and out of the conversation but it goes on - we are handed leaflets with phone numbers on, emergency pain team contacts, hospice newsletters with smiling dying children on the cover, a brochure called When Your Child's Cancer Cannot be Cured (which at no point surprisingly suggests putting a pillow over their face and handing yourself in at the local police station) and finally it draws to a close.
We get it. Rose is going to die.
I drift in and out of the conversation but it goes on - we are handed leaflets with phone numbers on, emergency pain team contacts, hospice newsletters with smiling dying children on the cover, a brochure called When Your Child's Cancer Cannot be Cured (which at no point surprisingly suggests putting a pillow over their face and handing yourself in at the local police station) and finally it draws to a close.
We get it. Rose is going to die.
Friday 3rd September
It has been a very, very difficult week.
There have been endless phone calls, ward rounds, decisions made, unmade, remade and contradicted by a myriad of doctors and days lost to indecision and chaos and in the midst of all this confusion one little girl lying in an increasing stupor of drugs to mitigate her terrible pain. The detail of the scans she could have or should have had or has had this week are too many to go into - but it has been a frightening and bewildering week for all of us. Last night finally some progress on hunting down what is going on - her bone disease has spread and as thought to be the case a tumour in her pelvis is wrapped around a nerve root and causing her excruciating pain. She also has disease in her hip and her knee. She's in a right old state in short.
So now we have some results we can make a plan and hopefully stick to it. Whole armouries of drugs are now in play - morphine two-hourly, fentanyl patches, fentanyl lozenges, nerve blockers, steroids, anti-inflammatories as well as a secondary armoury of drugs to combat the side effects of all the other drugs. Rose has been conscious less and less in the last couple of days which is appalling but so much less appalling than Rose awake and screaming and begging and pleading for someone to do something about the pain. Now that there is something to irradiate we are going on another ambulance road trip to the Marsden on Monday for just that. Number one plan is to get that done and then get everything possible done to get this baby home.
There have been endless phone calls, ward rounds, decisions made, unmade, remade and contradicted by a myriad of doctors and days lost to indecision and chaos and in the midst of all this confusion one little girl lying in an increasing stupor of drugs to mitigate her terrible pain. The detail of the scans she could have or should have had or has had this week are too many to go into - but it has been a frightening and bewildering week for all of us. Last night finally some progress on hunting down what is going on - her bone disease has spread and as thought to be the case a tumour in her pelvis is wrapped around a nerve root and causing her excruciating pain. She also has disease in her hip and her knee. She's in a right old state in short.
So now we have some results we can make a plan and hopefully stick to it. Whole armouries of drugs are now in play - morphine two-hourly, fentanyl patches, fentanyl lozenges, nerve blockers, steroids, anti-inflammatories as well as a secondary armoury of drugs to combat the side effects of all the other drugs. Rose has been conscious less and less in the last couple of days which is appalling but so much less appalling than Rose awake and screaming and begging and pleading for someone to do something about the pain. Now that there is something to irradiate we are going on another ambulance road trip to the Marsden on Monday for just that. Number one plan is to get that done and then get everything possible done to get this baby home.
Tuesday 31st August
Time stands still during hospital bank holiday weekends. Doctors that are so young you have to stop yourself from asking what they want to be when they grow up sit at the nurses' station trying not to make eye contact with anyone and even worse than that Costa Coffee on the ground floor shuts at 3. We are still in Kings. Memories of our island summer are fading fast - this time last week we were still looking at the lights on the water but it was our last night all together. Now we have slipped like automotans back into hospital behaviour - changing shifts and hats and juggling Rose and Felix between us. Almost like we've done it before.
We lose three working/scanning days with the bank holiday and nothing happens except higher and higher doses of morphine, three enemas, drips and lines and lots and lots of sick bowls. Just a regular family August bank holiday then.
But today it's business as usual on the ward - the admissions flood in and proper doctors who are the age of my friends and not my children are back at work. The hotlines between Kings, the Marsden and Stanmore start up again in an attempt to make a plan.
My plan - we have an MRI today at Kings to hunt down whatever is pressing on whatever and causing the pain so that the Marsden can radiate the bastard to kingdom come, we can ease off on the crazy levels of opiates that Rose is taking, she emerges from her morphine coma and comes home. Today.
Kings' plan - similar but maybe not today.
Stanmore decision - no MRI. Too much metal in her prosthetic leg for the magnet.
Back to the drawing board and another day lost. Running out of days. The new elephant in the corner - so many elephants, not enough corners - is that Simon goes back to work on Monday.
We lose three working/scanning days with the bank holiday and nothing happens except higher and higher doses of morphine, three enemas, drips and lines and lots and lots of sick bowls. Just a regular family August bank holiday then.
But today it's business as usual on the ward - the admissions flood in and proper doctors who are the age of my friends and not my children are back at work. The hotlines between Kings, the Marsden and Stanmore start up again in an attempt to make a plan.
My plan - we have an MRI today at Kings to hunt down whatever is pressing on whatever and causing the pain so that the Marsden can radiate the bastard to kingdom come, we can ease off on the crazy levels of opiates that Rose is taking, she emerges from her morphine coma and comes home. Today.
Kings' plan - similar but maybe not today.
Stanmore decision - no MRI. Too much metal in her prosthetic leg for the magnet.
Back to the drawing board and another day lost. Running out of days. The new elephant in the corner - so many elephants, not enough corners - is that Simon goes back to work on Monday.
Friday 27th August
It wasn't quite the departure from the island that I had in mind - before we could run out of summer we ran out of Rose. We didn't get to take the last photo of the children on the tree trunk on the beach or go blackberrying. One more night of out of control writhing pain and we were admitted first to St Marys on the island for them to stabilise the pain - unsuccessfully - and then blue lighted back to London. In none of my mental pictures of how the summer would end and the sadness with which I would pack up Rose's belongings did I imagine her strapped down in the back of the Isle of Wight ambulance service while we threw eight weeks of debris into the back of the car. No time at least to think too hard about leaving.
More ambulances today to the Marsden from Kings and back to Kings tonight - more scans to hunt down the cancer in her body but unsuccessful so far. Nerve blocks and more morphine patches and Rose finally gets a night's sleep.
In two days Rose has seen three ambulance teams, three different community escort nurses, an oncologist, a radiotherapist, three radiographers, several registrars, about 20 nurses, the pain team and of course the clowns. No wonder there are shortages in the NHS - they have spent all their money on Rose.
More ambulances today to the Marsden from Kings and back to Kings tonight - more scans to hunt down the cancer in her body but unsuccessful so far. Nerve blocks and more morphine patches and Rose finally gets a night's sleep.
In two days Rose has seen three ambulance teams, three different community escort nurses, an oncologist, a radiotherapist, three radiographers, several registrars, about 20 nurses, the pain team and of course the clowns. No wonder there are shortages in the NHS - they have spent all their money on Rose.
Tuesday 24th August
So each fresh hell makes the one before look like cancer for beginners.
Just as the radiotherapy starts to show some improvement in Rose's arm pain from nowhere comes leg pain that makes all her other pain so far look like a twinge. In her good leg comes pain from the hip to the shin which leaves her screaming, sweating, crying and begging us for help. It is the most mind-splitting agony we have ever been in to watch her and hold her and stroke her and be able to do nothing - nothing at all - except double and then triple the morphine doses. We have to close the windows and doors in the house because her screaming is so loud. When each attack subsides or the morphine finally takes the edge off it Simon and I are left shaking - and frantically creating a diversion for Felix to get him out of the house and away from her.
The Marsden speak to the community team on the island and an angel in uniform immediately drives out to the house and sticks painkilling patches all over her. We can give morphine on top and there is no upper limit. And do you know what the sick sick sick irony of this is - it's not even the bone pain that's going to kill her. Her chest tumours are still totally non-symptomatic - not a wheeze, not a cough - yet that is what will slowly occlude her lungs and end this hell. If it hadn't come back in her bones she would still be out on a sailing boat, riding her bike round the island and running on the beach and her prognosis would be just the same. In Disney movies no one dies of osteosarcoma - they fade away gently while having long intense conversations with loved ones not in a sweaty, hair-tangled mess of vomit and morphine.
Bad day.
Just as the radiotherapy starts to show some improvement in Rose's arm pain from nowhere comes leg pain that makes all her other pain so far look like a twinge. In her good leg comes pain from the hip to the shin which leaves her screaming, sweating, crying and begging us for help. It is the most mind-splitting agony we have ever been in to watch her and hold her and stroke her and be able to do nothing - nothing at all - except double and then triple the morphine doses. We have to close the windows and doors in the house because her screaming is so loud. When each attack subsides or the morphine finally takes the edge off it Simon and I are left shaking - and frantically creating a diversion for Felix to get him out of the house and away from her.
The Marsden speak to the community team on the island and an angel in uniform immediately drives out to the house and sticks painkilling patches all over her. We can give morphine on top and there is no upper limit. And do you know what the sick sick sick irony of this is - it's not even the bone pain that's going to kill her. Her chest tumours are still totally non-symptomatic - not a wheeze, not a cough - yet that is what will slowly occlude her lungs and end this hell. If it hadn't come back in her bones she would still be out on a sailing boat, riding her bike round the island and running on the beach and her prognosis would be just the same. In Disney movies no one dies of osteosarcoma - they fade away gently while having long intense conversations with loved ones not in a sweaty, hair-tangled mess of vomit and morphine.
Bad day.
Wednesday 18th August
Radiotherapy is over and we have been back on the island for a couple of days - all together now with no more interrruptions, hospitals, alternative holidays or cricket...no sunshine but who cares. Felix is sailing and Rose and I are buying up the island's Sylvanian Family population and new dvds. Today she is grotty - there seems to be an ever decreasing line between being in pain and therefore miserable or dosed up on morphine and therefore miserable. Still windows when the pain gives her a break and we can go and do something fun - but it's more about creating fun for Felix. This morning I dropped Felix and Simon off to play golf while simultaenously handing Rose sick bowls in the car - morphine, empty stomach, no appetite, vicious circle etc etc.
But later we take a stroll to the beach with the dog to watch Felix sailing in the harbour, collect shells and look at the lifeboat and I am so grateful that we have this beachy hideout this year of all years. I have more plans and things I still want to do with her here than I have days left - I am going to run out of summer soon. But there are still blackberries to be picked on the Downs, marshmallows to be toasted on beach bonfires and lots more pottery to be painted. Living in the moment and grateful for every minute of it.
But later we take a stroll to the beach with the dog to watch Felix sailing in the harbour, collect shells and look at the lifeboat and I am so grateful that we have this beachy hideout this year of all years. I have more plans and things I still want to do with her here than I have days left - I am going to run out of summer soon. But there are still blackberries to be picked on the Downs, marshmallows to be toasted on beach bonfires and lots more pottery to be painted. Living in the moment and grateful for every minute of it.
Friday 13th August
We've done three treatments - it's all more life experience for all of us that we'd rather not have but there it is. It's ok - the team are lovely with Rose, the treatment is fast and should be painless but she has to be positioned each day in the exact same spot and her arm is so sore that even with all the morphine in the world at our disposal she cries as she is moved about and measured. And it's a first for me - I can't be with her. There's not been a scanner so far that I haven't been in wearing a variety of fetching lead aprons but this is apparently a definite no-no. I just get a one-way microphone to her and she feels miles away and looks like the most vulnerable little scrap lying on her table clutching Snuffles. She is.
There isn't a single other child there and a single other patient under the age of about 50. Despite endless cheerfulness with Rose and the staff I feel I am about to drown in my own bile and rage.
There isn't a single other child there and a single other patient under the age of about 50. Despite endless cheerfulness with Rose and the staff I feel I am about to drown in my own bile and rage.
Wednesday 11th August
Admitting defeat on our gung-ho 'we'll do it from the island' approach to radiotherapy. Rose is desperate not to leave for London but realistically a six hour return journey for ten minutes on the table is going to kill us all. We're going home.
Monday 9th August
I've got my boy back! His health and vitality and sun tan is life-affirming and an evening with him is probably as restorative as his week in Corfu - which is just as well as he is off again in the morning to have more fun with more friends. Cycling and kayaking in the New Forest way better option than watching his sister being lined up on a radiotherapy scanner every day for a week.
Wednesday 4th August
We leave the island early and belt back up the A3 to the Marsden to meet the latest walk-on extra in our lives - Frank Sarran their radiotherapy consultant. Lifetimes ago we had a short meeting with him to discuss the merits of radiotherapy post-operatively in Rose's leg - when we said goodbye that day as he shook our hands he said 'lets hope we never meet again - things will not be going well if we do'. Funny how these lines stick in your head.
He's delightful as they all are and extremely tactful and sensitive in Rose's presence - she is bored within minutes and goes to find the clowns and he can get down to business. Five treatments over five days, no promises but might bring some pain relief. And can we start tomorrow. Aaagghh we have left the dog on the island, the house unlocked and the neighbour doing a quick beach walk with him. We don't even have a toothbrush with us and are booked on the 5 o'clock ferry back to the Isle of Wight. Resist the urge to point out that a phone call to tell us they had started booking the sessions already would have been helpful and realise that we are so much more in control than we used to be. We say we will come for the pre-treatment scan in the morning and stay in London but that treatment will have to wait till next week. Which of course is fine. An hour later we are bizarrely back in Dulwich just waiting to get the hell out of here again.
He's delightful as they all are and extremely tactful and sensitive in Rose's presence - she is bored within minutes and goes to find the clowns and he can get down to business. Five treatments over five days, no promises but might bring some pain relief. And can we start tomorrow. Aaagghh we have left the dog on the island, the house unlocked and the neighbour doing a quick beach walk with him. We don't even have a toothbrush with us and are booked on the 5 o'clock ferry back to the Isle of Wight. Resist the urge to point out that a phone call to tell us they had started booking the sessions already would have been helpful and realise that we are so much more in control than we used to be. We say we will come for the pre-treatment scan in the morning and stay in London but that treatment will have to wait till next week. Which of course is fine. An hour later we are bizarrely back in Dulwich just waiting to get the hell out of here again.
Sunday 1st August
Andrew has cruised into Bembridge Harbour in his gorgeous boat and taken Felix to Corfu - we are so happy he is going and so appreciative of the fact they haven't had a summer holiday without Felix for three years but it's SO painful that they are all going and we are not. How ridiculous is that - with all the significance of what is happening for us what's a holiday but we are so flat and sad when we get back from saying goodbye that we bundle Rose into the car and drive up onto the Downs for a gentle walk and a lovely pub supper with the dog.
Radiotherapy appointments start this week on the mainland and Felix is so completely in the best place. Heat and luxury terribly overrated.
Radiotherapy appointments start this week on the mainland and Felix is so completely in the best place. Heat and luxury terribly overrated.
Monday 26th July
The boys are back in London for the week for a cricket festival and Rose and I are taking it very easy on the island. Picnics on the beach with family staying nearby and lots of gentle playing with friends at the house - the pain and frustration for her of not being able to sail, cycle, trampoline and run around on the beach is mitigated by trolleys full of landfill from Tesco. We will need a trailer to get the dvds, toys and books back to London at the end of the summer - arts and crafts, baking and listening cds are the new thing and every mother in the neighbourhood is buying into it. It's still ok more than it's not and most of the time I'm in my depth - pain relief has stepped up but I'm still not sure she's ever free of it. Behind closed doors the bewilderment and fear is too much for her more often, her moods are understandably testing and there are no boundaries any more - I don't make her brush her teeth if she can't be bothered, there are no bedtimes, no mealtimes, no time away from each other and it makes the last two and a half years look like a walk in the park. I am exhausted and yet this is just the beginning of the next phase, the new normal.
When distracted from pain and immersed in something fun Rose is the same Rose she has always been. This shouldn't happen to anyone let alone any child but if ever there was a child that was going to grab life by the scruff of the neck and snog it senseless it's this one. In pain and on morphine Rose is still more fun than just about anyone else I know. Spectators on the sidelines of our life remark continually on how well she is doing and how much she is still getting out of every day but we are left with the fallout from pent-up pain and anger when the fun comes to an end or the morphine wears off.
Anyway today they won their cricket on the mainland and here on the island I drank lots of wine with a lovely neighbour watching the lights on the water and the sailing boats and all is well.
When distracted from pain and immersed in something fun Rose is the same Rose she has always been. This shouldn't happen to anyone let alone any child but if ever there was a child that was going to grab life by the scruff of the neck and snog it senseless it's this one. In pain and on morphine Rose is still more fun than just about anyone else I know. Spectators on the sidelines of our life remark continually on how well she is doing and how much she is still getting out of every day but we are left with the fallout from pent-up pain and anger when the fun comes to an end or the morphine wears off.
Anyway today they won their cricket on the mainland and here on the island I drank lots of wine with a lovely neighbour watching the lights on the water and the sailing boats and all is well.
Saturday 17th July
A sunny and rainy friend and fun filled week on the Isle of Wight - fabulous and awful all at the same time like every moment with her now. But we were all together in her little island house where we have so many wonderful memories of both our amazing children. In a last-minute panic that this simply cannot be her last week here we've moved all our tenants for the summer into other helpful houses so that Rose can come and go from the beach for as long as she can or wants to. Corfu might be off but with a bit of hospital support and lots of painkillers there's nothing stopping her from a few more weeks of seaside life. Links are set up with St Mary's in Newport and the local GP, prescriptions faxed about from the mainland and we are coming back in a few days for as long as we can.
Friday 9th July
8am we meet Tim Briggs and our Stanmore nurse Chris Henry at the hospital in Bolsover Street where so many leg scans have taken place. They are calm and supportive and respectful of our wishes. For the first time we talk about Rose's quality of life and take a realistic look at her chances -finally after more than an hour all talk of surgical heroics and last-chance chemo is shelved. Rose is going to live for as long as she can with all the palliative support available but no-one is fooling anyone any more with talk of cure or miracles. I feel closer to them both than to just about anyone in the world apart from Simon during that meeting. What a journey we have all been on in the last two and a half years and we are acutely aware we are but one of their patients. What a hideous job. Briggs is more frank than he has ever been with us - describes her original tumour as massive and the fact that it didn't come back in her leg as staggering. He is an amazing man - and a father through and through. He will always be to us the hero that saved her life and her leg and gave us precious time with Rose. He told Rose years ago that they were going to grow old together which she has never forgotten and the fact that they're not is no one's fault. The chemo failed, the cancer is aggressive and so much more research and funding is needed into this bastard of a disease.
We leave at ten absolutely exhausted and drive like lunatics to get to Crystal Palace park where Rose is performing the Big Dance with her whole school. We don't know whether this is her last morning at school ever.
We leave at ten absolutely exhausted and drive like lunatics to get to Crystal Palace park where Rose is performing the Big Dance with her whole school. We don't know whether this is her last morning at school ever.
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