the media

http://news.sky.com/story/1083643/mums-plea-after-teen-was-denied-cancer-drugs

Chloe was judged "too young" to get through the clinical trial door

The media is getting very interested in Chloe's story.  I was interviewed live on Sky TV on Saturday morning and this is the online story they included.

Here's why the media is interested in our story:

- Survival rates for the kind of cancer Chloe had haven't shifted in some 30 years.  If you compare this to what has happened in terms of technological advancements, you can see that innovation is sadly lacking in this area.  Astounding when you think that these kind of rarer cancers tend to strike teenagers more than any other group.  Teenagers with the world laid out at their feet; teenagers who haven't had a chance to marry, work, have children and make all the other major life decisions that us humans enjoy; teenagers who are so very very important.

- Chloe was treated on an outdated protocol set up in 1999.  This protocol was described as a "clinical trial" - even though it was 14 years old!  Hardly cutting edge.  Again think what has happened in the past 14 years.  Medicine in this area moves very very slowly and in the meantime people like my daughter die.  And nobody seems to do anything about it.

- Chloe was blocked from entering a clinical trial for a new investigational drug when she was 17 and nine months.  The entry criteria for the trial was 18.  There was no clinical reason why the entry criteria was 18 (at nine stone Chloe was an adult weight).  At this point we had run out of all other options and we were told this drug "may" work.  We kicked, screamed and begged to be allowed on this trial.  Doctors agreed we should have been allowed on it, Simon Davis CEO of the Teenage Cancer Trust intervened personally and we had help from out local GP.  The Royal Marsden wanted Chloe to go on the trial; so did University College London Hospital.

But the door remained tightly closed and Chloe was not allowed on the trial.  Chloe died and so will other young people who have the same illness if we don't do something quickly about changing the current entrenched status quo.

The trauma of fighting this obstacle added to an already agonising situation.  It was unbelievable and it was wrong.

Fortunately the landscape seems to be shifting.  It seems that we aren't the only ones left incredulous that in this day and age better and more modern treatments aren't available - especially for somebody so young. There are two initiatives going through parliament at the moment to suggest ways for speeding up innovation for rarer illnesses and for removing the ridiculous bureaucratic obstacles that stop people like my beautiful daughter trying new drugs that are showing promise:  the Les Halpin initiative and another by Maurice Saatchi. Lots on the internet about both of these initiatives.

Chloe's story is being used as the human face of what happens when innovation is thwarted and access blocked.  It is a broken system and needs changing.  Cancer affects one in three of us and over 50 per cent of people who get cancer get a rarer cancer.  Of the people that die of cancer over 50 per cent die of a rare cancer.  A rarer cancer could affect any one of us or one of our loved ones at any time.

This is a debate that we all have a potential stake in.

It's a bloody horrible illness: cancer.  I've had quite a lot to do with it.  Among the people I have loved most in the world, two of them have died young and not old of cancer.  My beautiful Chloe, aged 18, and my wonderful Mother, aged 60.

My Mother's death left me bereft.  I was so close to her and it's tough loosing your Mum when you are just 20.  But looking back she was 60.  My brother, sister and I were old enough to look after ourselves and she'd lived a life.  It was so sad for us ; but not really a tragedy.

Conversely, I think it would be difficult to argue that my Chloe's death was not a tragedy.  She was 15 when she got ill.  Completely out of the blue she had a pain in her leg.  "Growing pains" the doctor said time and again.  The pains started in September 2009; the cancer was finally diagnosed in February 2010.  Almost six months for the rare, aggressive cancer to take hold in her beautiful young body.

Late diagnosis is very common in children's and young people's cancer.  Lot more education needed here! And for the record consistent pain, especially at night, is NOT normal in children and young people.  Whereas older people suffer from aches and pains - consistent pain in a young person needs investigating.  But please remember the kind of cancer Chloe had is thankfully very rare!

Cancer in teenagers and children is as bad as it gets.  I've seen so much of it these past few years.  Little kiddies being sedated for radiotherapy;  teenagers shut in hospital wards day after day whilst the rest of their world parties (courtesy of Facebook they can add to their torment by watching a blow by blow account), wigs and baldness, bone marrow transplants, sickness from chemotherapy and severe weight loss.  And some of the other things I don't even want to remember of mention.

 It really is as bad as it gets.

Just for now I'm in campaigning mode which dulls the pain ever so slightly.  In one way it's cathartic and it also allows me to scream as loudly as I can that my child really mattered;  as much as every other child.  I also really hope that by sharing our story and putting a  face - and a really beautiful face at that - to demonstrate the ultimate result of a broken system.

I'll keep you posted.

Sunday Times

http://www.thesundaytimes.co.uk/sto/news/uk_news/Health/article1248620.ece

Lois Roberts, Sunday Times, did an excellent job of covering the difficulties we had accessing the right treatment at the right time.

So hope that this publicity helps another family at another time.

xxx

Grief is the deepest lesson

1997 was a perfect year 

If only I'd taken time to stop.  To drink in the simple happiness of being the extremely lucky owner of two beautiful new healthy baby girls.  They were just perfect to me and I was at one level enthralled by what nature had given me; but on another driven, worried and neurotic that I wasn't achieving all I needed in life. I was searching for "happiness", "fulfilment" "the perfect career".  And all the time my personal happiness  was right under my nose.  1997 was a perfect year.  I know that now.

Someone once said "Grief is the deepest lesson - if you choose to learn it"

I wish I'd learnt it earlier.  I wish I hadn't been so busy.  I wish I had spent every single moment breathing in the happiness and fulfilment that two baby girls can give - if you choose to accept it. In my humble opinion if you have your health,  your family (and a means of providing for them) you have everything. 

I'd swop places with you in a heartbeat. 

Chloe was very poorly for a short time before she died. But it was terrifying. I woke every morning rigid with fear about what the next day would bring.  I thought this was the worst that life could conjure up.  Watching your child die, helpless to stop the process, must be against every cell in a Mother's body.  

But I was wrong that wasn't the worst.  Loosing my child is worse.  Selfishly I would want her back unwell; because it's so very hard living without her.  The hole is ENORMOUS, the silence DEAFENING, the pain EXCRUCIATING.   I remember so well the day my beautiful daughter was born; I wish I could forget the day my beautiful daughter died.  I wish I hadn't lived to see this.

It's almost two months since she died and so far the pain has just got worse and worse for me. 

But according to my grief counsellor the pain is essential.  (My grief counsellor is definitely essential for me and I highly recommend a good one).  The theory is you have to really feel the pain before you can feel any better.  If you try and avoid the pain, through work, drink (whoops!), drugs - or any other displacement activities - it just won't get better.  I've heard a number of bereaved parents, many years down the road, saying that it never gets better.

Personally I don't believe this has to be the case.  But I also don't believe that time alone heals this kind of pain.  I think you have to work at it.  I also strongly believe that everybody deals with grief and loss very differently and the trick is finding the best way for you.  

So I turn again to what helps me.  I feel I need a hand at the moment and, so I'm told, it's good to ask for help when you need it.   Top of my list today is a book called "anger" - by Thich Nhat Hanh.  He's a buddhist monk and Nobel Peach Prize nominee.  Described by Martin Luther King as "... he is a scholar of immense intellectual capacity. His ideas for peace, if applied, would build a monument to ecumenism, to world brotherhood, to humanity."

He's good. And it turns out part of my pain is caused by a ferocious anger.  It's true I am bloody angry.  How dare God/the universe take this wonderful soul and cause so much pain.  And again the message is simple: get in touch with the anger/the pain - understand it/feel it and only then can you move on.  If you don't you just bury it and it causes all kinds of destruction in your own mind and body and helps to destroy other relationships around you.  I really get that. 

This grief business is really hard work.  But there's that glimpse of hope again.  Maybe if I do the work life will become worth living again and maybe, just maybe, the sadness will turn into some kind of inspiration and life will be different, of course, but just as worthwhile as before.  Maybe, like my US friend and fellow bereaved mother Carol Basso, I'll turn the grief into something really worthwhile www.1million4anna.org.   Carol is an inspiration to me.  .https://1million4anna.org  .

Writing this blog helps me to identify where the hope may be found.  I need to capture the pain and the misery - because without this it cannot be an honest account of a grief like this.  This blog is really useful to me, and friends have told me it helps them know what is going on so they can help too.  I have found my dear friends so eager to help; but they are at a loss as what to do.  I guess most of all though I hope that this will help others know that there is a way through grief and loss; even a loss of this magnitude.  I have at times felt so lonely and have gained such solace from other people sharing their loss and feelings.  

I'm going now to hug the three most important people in my life: my daughter Hannah, my grandson Roman and my husband Simon.  Taking that advice - grief can maybe teach us to really really value what is important. 

End of today's lecture :)   Love you Chloe - with all my heart xxxx

tea with the vicar

Yesterday was a really bad day.  On the emotional pain score it was a big whopping 10.  It was six weeks since my Chloe died and the pain seared through me like it had never done before.  They say that grief can feel like a physical pain - boy is that true for me.  Yesterday was the worst day so far.

I now believe there is such a thing as a physical broken heart.  And mine is broken in two and I don't see any healing in sight.

Much to my husband's, and some friends' amusement, I'm into yoga in a big way - but not, I hope, in a weird way.  If that makes sense.  Meditation has helped so far and has kept me just away from downing the whole gin bottle in one, a little trip down to Beachy Head (that is a joke, I think:) or murdering somebody/anybody who seems to have it better than me - and that seems like quite a lot of the population at the moment.

But yesterday yoga didn't have a chance against the vicious grief that ripped through my body.  Not a chance.

So I tried God.  We haven't been on speaking terms lately.  I've given him/her the odd evil glance up at the "heavens" and occasionally I've muttered the odd, very lame, swear word in an upward direction.  Once a Catholic and all that - I never dare to do any real shouting.  But deep deep down I feel so disappointed in my God.  I haven't been that bad a human being, not totally good but I know of far worse.  In fact I was a pretty good Catholic up until a few years ago.  I was even once a member of the Catholic Mothers and I cleaned the church!  Why didn't God remember any of this when he/she chose Chloe for one of the 35 UK children each year who fall victim to Ewing's Sarcoma?  Lately my God hasn't seemed very kind, fair or worthwhile.

So today I tried to find out about a slightly different God. Heaven help me I went to the Church of England.  Slightly worried that my very Irish Catholic Mother and Grandmother would start hurling rocks at me from "heaven". But nothing happened and it was all really nice. In fact really nice.

Kathryn is an ex-barrister and now our local vicar.  Some could say that she was sent to me - as I felt a renewed kind of "faith" when I met her.  She conducted Chloe's memorial service and my God was she impressive.  She put in the kind of performance you see in films - thoroughly uplifting and inspirational. Chloe would have adored the theatre of it. Spectacular!  So many people have commented since about how she touched them. She is really really lovely.

So today we had tea together.  I've never had a vicar to tea and if felt very civilised and I felt a little bit honoured, and a little in awe.  Never one to beat about the bush I went straight in with the killer question: "why did your God allow Chloe, aged 18, beautiful, funny, marvellous (I could go on and on) die of bone cancer?"  Seems a pretty sensible question to me.

I should have known it would have taken far more than that to rattle my wonderful new friend.  She didn't have any answers and said nothing trite about finding God in other places, or God could have made her suffer more - or any of the previous "ridiculous" things I'd previously heard about religion.  Instead we sat and talked about how unfair life is, how dreadful things happen to really good people, how there are many forms of suffering and about the Easter story and Jesus suffering on the cross.  

Most importantly she asked me to sit with the pain and not try to find any answers now.  And strangely that seemed to satisfy me - for today at least.

So at the end of the day I went back onto my yoga mat and sat and thought of Chloe and how much I love and miss her.  And it reminded me that I have a long long journey back to anything resembling "happiness" - whatever that is.  But just for now I need to be patient and not search for too much meaning.

Today felt a little better than yesterday and for the first time in a long time I contemplated going to Mass on Sunday.  That is a big step.

THE BALLAD OF PEAKS HILL GOAL (guest post by Simon Binner)

THE BALLAD OF PEAKS HILL GAOL

(with thanks to Oscar Wilde's Ballad of Reading Gaol written 1897)

Thu 11 April 2013    exactly six weeks since Chloë Drury died on Thu 28 Feb 2013

Six weeks our guardsman walked the yard,

In a suit of shabby grey:

His cricket cap was on his head,

And his step seemed light and gay,

But I never saw a man who looked

So wistfully at the day.

Six weeks dear Chloë’s now been gone

Different meanings now for ‘gay’

Her leather jacket’s Hannah’s now

Her iPhone’s still in play

But the texts it gets are wistful

To a Chloë now gone away

Bedroom: untouched, unloved perhaps?

Mixed feelings – re-paint or leave?

That room was Chloë’s Reading Gaol

Neither Deb nor I believe

We’d want Chloë back inside that trap

So would re-paint help us grieve?

The Chloë that we’d beg return

No oxygen masks would need

She’d not be trapped inside that room

Nor deign us ‘rents’ to heed

She’d be fake-tanned up, and off to Shooshh

How we’d wish her now ‘God Speed!’

Her ‘cricket cap’ of short cropped hair

Cancer wigs be cast aside

Short-skirted, pre-loaded, laughing

Stalwart friends close at her side

What precious, oh so precious times!

Snatched but months before she died

In that six short weeks, baby Roman,

Knowing naught of Chloë’s depart

Eclipses grief with his baby antics

And his freshly learnt ‘walk on part’

If only Chloë’d seen Roman walking

That’d have gladdened every heart

Six weeks, my Chloë, you’ve been gone

What wouldn’t I gladly pay?

To have you back, in full attack

‘You Arschloch!” hear you say

So, yes, I remain ‘a man who looks’

Very ‘wistfully at the day’

The Ballad of Reading Gaol is a poem by Oscar Wilde, written in exile either in Berneval or in Dieppe, France, after his release from Reading Gaol on or about 19 May 1897. Wilde had been incarcerated in Reading, after being convicted of homosexual offences in 1895 and sentenced to two years' hard labour in prison.  During his imprisonment, on Saturday 7 July 1896, a hanging took place. Charles Thomas Wooldridge (ca. 1866 – 7 July 1896) had been a trooper in the Royal Horse Guards. He was convicted of cutting the throat of his wife, Laura Ellen, earlier that year at Clewer, near Windsor. He was aged only 30 when executed.  This had a profound effect on Wilde, inspiring the line "Yet each man kills the thing he loves."

Friends: don't leave home without one...

I'm not really very attractive as a friend at the moment; bereaved parents aren't really a laugh a minute.  In my experience (I've learnt never to assume how others are feeling) we seem to have a permanent rain cloud above our heads.  Sometimes it pours and thunder and lightning strike; and sometimes it slows to a gentle yet persistent drizzle.  Whenever I peek up there it is - kind of part of me now. Maybe always part of me.

So much respect to a dear friend who subjected herself to a spa weekend with me.  And how lovely it was too.  She sat and listened when I wanted to talk about Chloe or ranted about the injustice of teenage cancer and the inadequacies of the current system (more on that in a minute) ; laughed when I laughed; indulged my new found passion for an early drink or two and just kept me company.

Believe me I wouldn't recommend keeping me company at the moment; I don't even want to keep myself company.

Yet when I take a moment to look around  there are so many people who want to keep me company; and this definitely isn't because there is anything special or fun about me or that I am a fantastic friend (I've been a crap friend for the last three years whilst Chloe had cancer - I had absolutely no resources left).  

But what I think I've realised is that I'm really good at choosing friends and have learnt to reach out and try to connect. What a gift!  My friends have simply, almost without exception,  been wonderful and if there's anything that can slightly thaw my frozen heart it's the love and warmth of friendship.  (Oh and the smile of my little 10 month old grandson.  He is super!)

Another thing is that people I've barely spoken to before are coming up to me and sharing their own heartache - loss of a husband, a niece, a mother.  Lots and lots of painful losses.  It of course makes me feel sad, although I don't think I'm that capable of feeling any more sad, but I feel especially honoured that people feel they can do this - as sharing with another human being makes us all feel that bit less lonely.  Personally I think loneliness is the worst human emotion there is.  That and deliberate unkindness.

I don't believe that a human being can survive the intensity of grief involved with losing a child, without love and support.  The trouble is when we are so hurt it is easy to kick out at those you love or to huddle in a little ball and isolate yourself under the duvet (believe me I've been there).  IN my humble opinion anybody in my dreadful situation should really try not to do this.  I know it's easier said than done; but I'm not sure any of us really know how to deal with the death of a child and I'm beginning to feel us Brits don't do grief so well either.  So we're all learning - and hopefully we can learn together; not apart.

Every morning I wake up somebody has sent me a lovely text message.  This morning: "Thinking of you Debbie.  Hope you are eating and drinking properly and taking care of yourself".  No worries on the drinking front:)   Thank you, thank you, thank you for these messages.

Please if you ever know of anybody who is bereaved send them messages.  They may not reply (I always try to but just sometimes I'm under that duvet) but they mean so much.  It sounds so trite but love and friendship really can make the impossible life a little more possible.  And they give me that tiny bit of hope that, in my sadness, I need so badly.

Another lesson that Chloe, my tough, feisty, inspirational daughter, could have taught me so easily.  She was surrounded by friends nearly all of the time.  They made the last few years of her life fun, happy and fulfilling - despite the horrid illness.

Quite simply friends (and her family) made her life worth living and I think they are making my life a little more bearable too.

On a much grimmer note please check out this link.  Chloe didn't get the treatment she needed because of the numerous obstacles in the way.  The Teenage Cancer Trust has launched a campaign to try and change the current system.  They are using cases like Chloe's to show the human cost of failing to develop better systems that allow better treatments that affect young people.
http://www.thisiscroydontoday.co.uk/Chlo-euml-s-campaign-backed-Teenage-Cancer-Trust/story-18618945-detail/story.html#axzz2PtO3z3QS

five weeks on ..... lessons learnt

Five weeks after Chloe died and this is what I've learnt, so far, about grief:

• Firstly it runs you over, it lets you catch a breath, and then it reverses and runs you over again. 
• The vast majority of people are really kind - if you allow them to be.  It's impossible for people to know what to say; thankfully the loss of a child is way outside of most people's experience.  But if you open your heart most people just want to help.  If you allow them to it really really helps. 
• Love and friendship are all that matter.  Be really really grateful for the love of close friends and family.  I definitely couldn't do this journey without them.  AND I'm sure that I'm not much fun to be around at the moment; I am so grateful that people still want to spend time with me and reach out with love, understanding and compassion.  I'm totally amazed that some of the people that do this are under 18. I thought that teenagers were supposed to be a pain! 
• A few people can be mean.  Most don't mean to be mean - they just can't deal with a loss of this magnitude or it's just not the right time for them - and at the end of the day my grief is not their grief and sometimes I want to "get away" from me too.   So they avoid you, say daft things or sometimes even lash out.  I'm afraid grief makes you selfish and I'm way too tired and lost in pain and sadness to try and understand why they may act like this.  I'm sure that there are many reasons why and I'm absolutely certain that I am also super sensitive at the moment.  So, just for now, I use my mental "delete" button to deal with these people.   Their issues are not my problem and it means I have far more energy for the people who matter to me.  Simple?
• A very very few number of people are just mean.  Delete! 
• Low expectations really help.  A fellow bereaved parent (sadly there's a little club of us) advised me to expect to feel very sad every day.  So every time I feel a  tiny bit less sad it feels like a bonus.  Maybe a good way to live life generally.  
• Stay with the thoughts.  It seems to me that there is no way round grief.  Every time I have a sad thought (which is pretty often) I stay with that thought and just allow it to settle.  Some people try and keep really busy to stop the thoughts, and I know that some find this helpful.   Personally I find it much better to stay with the thought until it gently drifts away.  This seems to make the bad thoughts a tiny bit less powerful. 
• Remember that the strength of the sadness is equal to the strength of the love.  Chloe really really mattered to me; so it really really hurts now she is gone.  No surprise I guess. 

Onto another day, another week without my precious Chloe :(

bedtime thoughts

My bedtime reading....

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

Eleanor Roosevelt

My eulogy to Chloe

A couple of friends have asked me to share my eulogy to Chloe. I read this at her celebration of life. I hope it sums up what she meant/means to me and I hope that you enjoy reading it. It also reminds me of how Chloe chose to live, despite her illness. Whenever I feel overwhelmed with sadness I try and remember this - we all have some degree of choice of how we live...

4 weeks before Chloe died

A Child of Mine      by Deborah Binner, Chloe’s Mother

Thanks for coming!  How Chloe would have adored this!  All this love and all these people gathered together just for her.  Chloe loved the stage; and here she is right at the centre of it.

She’ll be looking down on us and saying... “Oh, no, Hannah it’s Mum!  She’s so attention seeking. She’s so embarrassing.  Mum will use that awful posh telephone voice, and she’s bound to cry and say something totally lame about me.  Hannah, please stop her!

Yes, Chloe sure liked to keep us oldies in check and delighted in telling me and Simon exactly where it was that we were going wrong.   How we miss that.

So,  firstly,  I apologise to both of my daughters that my eulogy will probably do all all of the above.  It will also  be woefully inadequate in capturing the spirit of my beautiful, feisty and amazing young daughter  But I promise that, despite  the most savage and intense grief, I will focus upon Chloe’s life.  A short life that, thank God, was exceptionally well lived.

Born 25th January 1995, she shot into the world determined to make her presence felt.  She was a noisy baby, a tantrum-filled toddler and sometimes a nightmare little girl.  In short, she was bursting with life, vitality and  passion. She was argumentative, exasperating and totally adorable. Chloe, Hannah and I were joined in vice-like bond from the very beginning.  We  absolutely adored each other and, of course,  still do.

Chloe’s beauty, charm and independent spirit meant that I was wrapped around her little finger from the very beginning - as were so many others - and she exploited it dreadfully.  

She just had a way about her.   I’m sorry Mr Hordley - I know that I ought to have helped you to mould Chloe into a diligent student.  She was undeniably bright and full of potential; but  I wasn’t much of a disciplinarian.  I indulged both of my daughters  from the start, but I hope it was that blanket of love and certainty that helped give Chloe the spirit, the resilience and the courage to  carry on living - and really living in a quite spectacular way -  for the three years of her illness.  Deep down she probably knew that her lifespan was limited, but in her words “why go there?”.  

By 15, Chloe had blossomed into a beautiful young woman - leggy, with dark tumbling curls and huge green eyes.   The world was at her feet; but  little did we know that all hell  was breaking loose inside her body.  In February 2010 Chloe was diagnosed with Ewing’s Sarcoma, a rare and aggressive form of bone cancer that tends to affect tall adolescent boys and slim willowy girls. The horrible irony is that her sought-after body shape, made her susceptible to Ewing’s Sarcoma.  We were brought down by a chance in a million; a lottery win in reverse.  There is no reason for this illness, no genetic links - just pure bad luck.  

So how did she respond?  Typically, she told me to “man up” as she set about identifying all the “hot boys” on the cancer ward.  And there were many beautiful boys -  two of them I’m so happy to say are here today.  Strangely, we had some good times on that ward and bonded as part of an exclusive club  - yet a club that no sane person would willingly apply to join.

There were some very dark times to come; and I’d be lying if I said we didn’t at times drift into despair.  But Chloe would always bounce back and quickly came to deal with her treatments in the same breazy, cheerful manner - planning it carefully around drama lessons, parties and the commandeering of Hannah’s ID card to facilitate Chloe’s illegal entry into SHOOSH nightclub in Croydon.  Sterile surgical gloves that the NHS funded to assist Chloe’s cancer treatments, were instead used for fake tan applications.  In full make-up and looking totally wonderful, Chloe would stick her arm out as the nurses pumped blood out or more medicines in.   She didn’t do pain, she wasn’t squeamish and the nurses would have barely removed the last needle from her arm and she’d be up and off out with her friends into Croydon until 3 or 4 in the morning.  Literally nothing would stop her.

I am so proud  of that spirit.

II can barely hold back my tears when I think of how her dearest friends surrounded her with a cloak of love, fun and comfort.  When Chloe was too ill to go out they’d all stay in with her; when Chloe was better: off out they all went.  Quite a big deal for girls of 15 and 16 when the world is so irresistibly exciting.   

Chloe packed a lifetime of fun into those three years, because she had such good friends.  You were so young, you are so young, but you dealt with a very poorly friend with a maturity way beyond your years. I suspect you all saw me as a “soft touch” as my eyes would light up as much as yours as I saw the beauty of you all heading off somewhere great and exciting.  I think I got as much out of watching this as you did going. Lifts, the odd drink, opening the front door at 6am in the morning.  No problem.  They were some of my happiest times watching my daughter have such fun, with such wonderful young people, and knowing that it all probably wouldn’t last.  There was a real intensity for me in those moments - I really can’t thank  all her friends enough.

On Mother’s Day just gone, that fell just a few days after Chloe’s death,  Sarah, Olivia, Rosie and Sophia sent  me a card from my “adopted daughters” .  I broke down in tears upon opening this card.  I’ve done a lot of crying over the past few years but that card really got to me

I so miss the way you filled out house with the vitality of your young lives. I have no worries that you’ll be back to tell us about your fantastic careers, boyfriends and, of course, you know how much I love babies.  Chloe was just too important to us all and we all shared some really intense memories.  I hope that in time these memories hurt less and inspire more.

Chloe didn’t see her dearest friends in the last few weeks of her life; that was only because she wanted you to remember her with a big smile, high heels and a far too short a skirt.  The Chloe you and we all loved. She spent her final days with me, Hannah, Roman, Simon and Ralph.  She gave us many gifts in those last few precious days - including telling me that I looked 10 years younger - very unlike Chloe and so I suspect that ‘the morphine was speaking’ when she said that.  Chloe didn’t do cancer and didn’t do depression either.  As we neared the end we snuggled up in her room and watched those dreadful Orange County Housewives programmes and wonderful Mike Leigh films.  She was poorly at times, but not that often, we ate fish and chips, still applied makeup and fake tan , laughed lots and little Roman would be bouncing around in the middle of it all.

Zoe we knew you were there with us in Germany and there was a huge comfort in knowing that you we could have called anytime and you would be there.  Rosemary and Chloe Ridgeway you were there with us every step of the way and Chloe knew that you loved her so much - you were like an extra Mum and an extra sister.   Jacob your sister loved you very much and she knew how much you wanted to see her.  She just couldn’t - but she did know.

Chloe’s spirit in the face of such adversity was startling and amazing.  My daughter taught me to seize and live every minute don’t sweat the small stuff and accept when you can’t change things.  She really is my inspiration.  She took herself off Facebook when she couldn’t join in anymore and then buried herself right in the love of her family.  And how we loved that.  It was a privilege to care for her, and she showed such skill in protecting herself from emotional harm.  Amazingly, most days she was happy; despite everything.

Some of Chloe’s treatment was horrific and involved long painful stays in hospital.  But she still managed to put cancer “in a small box in the corner of her mind”.  She’d be horrified if I ever suggested that she go on a trip with other children with cancer; but would occassionally “play the cancer card” when the benefits were too obvious to resist:-

• like emotionally blackmailing us into buying her a puppy - we lost that fight pretty quickly

• getting to meet Prince William and to advise Catherine on false eyelash application methods

• persuading Paul Clark, the CEO of Penta Consulting to employ her at £10 an hour - effectively Penta transferring cash to Zara and Topshop, but via Chloe Drury’s bank account

• and persuading me to let her go out clubbing the night before her Science GCSE exam!    Oops!    I forgot to tell Simon about that one!!   Never mind!

Chloe died as she lived - complaining little and trying to see the positive in the reduced landscape of her life.

I’ve lost my best friend and half of my hopes and dreams (Hannah you have the other half).  My family and I will never get over this - we don’t want to get over it.  Our challenge is to accept her death into the narrative of our lives without destroying anything else with our grief.

But at the same time, our story has been so life-affirming and we have been surrounded by the most wonderful love and support from a huge range of friends and family. You have held me up when I had no defences left  and I know that you will continue to do so.  There are far too many to thank here and now; but you know who you are.

My husband Simon and my daughter Hannah have been absolute rocks.  And baby Roman a ray of sunshine to us all.   Hannah, we are so proud the way you’ve looked after your sister and we are most especially sad that we couldn’t save her for you.  We did try very very hard.

There is one person I do want to mention - David Thomas - who lost his son Daniel, a Classics scholar at Oxford, not long before Chloe died and to the same illness, Ewing’s Sarcoma.  Despite this you have been a constant source of comfort to me - and sometimes a partner in crime as we fought the various ludicrous systems that prevented our children getting the right treatments at the right time.  One doctor once remarked that our consultant had the worst of luck when he had a lawyer and a journalist joining forces against him. Oh well.

Chloe’s care at the end of her life was amazingly well managed.  The palliative care team at the marsden and our wonderful community nurses settled into our eccentric little world and we all seemed to have a jolly good time most of the times.  Their support was so fantastic that even my emotionally stunted husband Simon finds it impossible to speak of them, even now, without starting to cry

I read the other day that there are worse emotions to have to live with than sadness, however vast and deep that sadness might be, it can be uplifting, invigorating, strengthening and above all a powerful reminder of how much Chloe matters; and always will.  My family and I will work hard to ensure we turn our current debilitating grief over her loss into something positive and worthwhile.  

Outside our home, the care offered for teenagers with a cancer like Chloe isn’t good enough.  Access to new treatments is sporadic and filled with many unnecessary obstacles.  Chloe was treated on a seriously outdated protocol and this needs to change.  Donations today are to the wonderful Teenage Cancer Trust.  We’re pleased that Simon Davis, Chief Executive of the Teenage Cancer Trust is with us today.  You’ll notice that he has his suits tailored with extra deep pockets: so however many of you wish to force donation cheques upon him today, he will still have room to carry them all away.  

Chloe was my inspiration and I’m determined to do something good in her name.

Chloe once said to me, with a smile and with her usual searing honesty: “Mum I’ve caused you so much trouble, I bet you wish I’d never been born.”  

Nothing could be further from the truth.

If, before you were born, Chloe, I could have gone to Heaven, and seen all the beautiful souls, I still would have chosen you

• If somebody would have warned me  “this soul will one day need extra care" I still would have chosen you

• If they had said, 'this soul would make me question the depth of my faith" I still would have chosen you

• If they would have told me "this soul would make tears flow from my eyes, that would overflow a river", I still would have chosen you

• If they would have told me "Chloe’s time here on earth would be short" I still would have chosen you

So, to answer you...  “Yes, Chloe, you’ve certainly caused us lots of trouble.  But just give me the chance and I’d do it all over again like a shot.  I am absolutely honoured to be your Mother and I love you with all my heart