Wednesday 5 November 2014

A handprint on my heart

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend...
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you

 Wicked - For Good Lyrics 

Such a poignant song for us.  The song one of Chloe's best friends, Olivia, sang at her funeral.  Olivia sings so beautifully/hauntingly.  And Chloe too.  One reason this song resonates in so many ways. The song tells of one friend who will go on to do amazing things; the other will be lost. 

 And that's how it is.

A memory springs up.  I'm crouching behind a bush at the singing teacher's house. "you aren't listening to me Mum!"   She was private, my girl.  A wonderful talent, but wanted to keep it private, even from me.  Still not sure why. They were special times sitting out there snatching a moment of her glory.  

"I'm limited",  such painful words that spear my already broken heart.  She was.  But only by cancer.

A song I heard a few weekends back with one of Chloe's best friends Sarah. We went to see Wicked. It was wonderful, painful, joyful, difficult - all those emotions all bursting out across the theatre.  Sarah is studying to be a children's onclogy nurse.  Wow.  I can't really write about Sarah without tearing up.  All I can say is that the NHS will be very very lucky to have her.

And as time pushes and shoves me away from my youngest child, I am indeed calmer.  I feel my life is building slowly and gently around the cavernous wound of loss.  Time heals; it is true.  But it only heals the intensity.  One just couldn't possibly survive at that level.  That, which is left, is quieter, gentler but, so sorry to admit, more deeply painful than anything else. 

 The finality of the loss sinks in.

"I'm limited".  I am and always will be.  But only by the death of my daughter.

Thoughts crowd my mind.  The song -  a momentary relief as I dive into the pain.   The words sharply reminding me that I too have not only lost a daughter; but a best friend too.

And now whatever way our stories end
I know you have re-written mine
By being my friend...

So many discoveries in the landscape of grief.   My daughters are my best friends, my life's work, my everything.  

Like a handprint on my heart

 I have most definitely been changed for the better because I knew you.  

  My daughter Chloe.  My best friend. 

Friday 5 September 2014

Why I support Saatchi Bill and why maybe you should too....

saatchi bill, medical innovation bill

Professor Andy Hall from Newcastle University, Lord Maurice Saatchi and Debbie Binner   discussing the Medical Innovation Bill

Ah the arrogance of the well person (back to this in a minute).

I was there once too.  Blissfully sailing through life with three beautiful healthy daughters.  Great husband, great job, great life.

Apart from the usual childhood illnesses, never really gave our health a second thought.  None of our children, nor either of us, had spent a day in hospital ever - well almost never(  I  let the side down at 24 - fracturing my spine after falling from a horse. Major at the time: minor in hindsight)

Life changes fast.  Life changes in a moment.

This Sunday (7th September) at 7.40am Radio 4's Sunday Programme will debate the medical and legal ethics brought up by Lord Saatchi's Medical Innovation Bill.

The Bill is designed to help medical doctors innovate new treatments and cures safely and responsibly when a terminally ill person has exhausted all standard treatments.  The programme asks "will it help patients"

I say it will.

The Bill was launched after Lord Saatchi lost his wife, the novelist Josephine Hart, to ovarian cancer.

"Insanity: doing the same thing over and over again and expecting different results".
For me Einstein's quote captures the essence of the Bill. 

The Bill is for families like mine.  Families destroyed by the bitterest of grief, as we've lost our youngest child to a system that refused to flex when we didn't want it to do the same thing again and again.  The research showed that the treatment wouldn't work.  It didn't.  No lesson learned there then. But at least we were all "nice and safe" as we stuck to the protocol and had all the clinical evidence we needed. .... you get where I'm coming from

Ewing's Sarcoma, a terrible adolescent bone cancer, killed my child.  That's true.  Just like leukaemia killed almost every child it touched in the 1970s.  Only after that people refused to do the same thing and pushed the boundaries.  Now almost 95% of children and young people survive leukaemia.

Ewing's Sarcoma killed my child; but the system didn't try hard enough to save her.

If only Chloe had had leukaemia.  My expectations have shifted somewhat you see.

Back to Saatchi.  I was interviewed today by a Radio 4 journalist for the programme.  Not an easy interview.  He was tough on me, which is unusual.  Usually even hard bitten hacks step around a bereaved Mother.  But not this time,he pushed me hard and I admired him for his professionalism.  I felt like a person again.

Why did I support Saatchi?  How can parents/patients really play a role in deciding treatment as they only ever have crude internet-based knowledge? Why do we need the Bill when doctors are already free to innovate? Would the Bill have made any difference to Chloe? Isn't the Bill useless really because doctors have a "God-like" self belief and if they don't want to innovate they won't and will just ignore the Bill (not my words)? Isn't the Bill just a waste of everybody's time? Was Chloe's consultant scared of being sued? Would I have sued the NHS?

Oh and -  to be fair this was said with some respect - aren't people like me and Lord Saatchi attention seekers who are stuck on campaigns like this as a way of exorcising our grief.

As a former broadcast journalist, I recognise a good interview.  This was a good interview and these were all valid and important questions. An interview that pushed and challenged and forced me to examine my own motives.  It made me think and dig deep into my soul to check with myself that I was doing/am doing the right thing.

Grief is utterly exhausting.  Supporting a campaign like this is too.  Trying to engage with an industry with a firmly "closed door policy" to any non-medics who want to challenge the status quo.  I've even had hate mail.  Quite amusing hate mail actually, and rather well written, but sad, I guess, that somebody would want to personally attack me.   I really would rather not be involved in this for many many reasons.

Some of the doctors and other health professionals I met with Chloe, top my list as among the best most decent people I've ever met.  But I stand firm in my belief that the NHS, despite its rhetoric,  does not take patient/public involvement nearly seriously enough.

I support the Bill because it is the right thing to do.  I support the Bill because I've seen at first hand the terrible messy world of childhood and teen cancer and witnessed time and again a kind of entrenched status quo.   "We can't do that as the evidence doesn't support it," our doctor would chime.

  Oh yes, dear consultant, in a perfect world we would have all the right evidence at the right time and yes I'd agree with you.  But when is that going to happen? Like, Never! Seeing as you work in a field where survival rates have improved very little; if at all, don't you think it's time to try something else?   Time to look at creative solutions, working together with industry, regulators, God forbid patients and parents!  Let's look at risk.  How do we share risk.  How do we make sure we provide a structure where we can push forward together and do something else.  How can we get better outcomes?

Can parents, like me, ever truly engage with any value in the complexity of medical discussions?  Maybe; maybe not.  What many of us can do is understand risk and the odds involved.  After all cancer patients work with this all the time with current treatments.  What I wanted was some control over my daughter's life.  I didn't want me or her to be dismissed and left on a conveyor belt which was speeding rapidly down the wrong path.  To the system she was another sick child; to me she was  everything.  Simply everything.

What would you do?  How would you feel?

My daughter was given a 25% chance of survival on current treatments when she was diagnosed.  We saw that as hope, so we were happy to try the treatment.  When first line treatment failed, the odds dwindled to 7% at best.  That wasn't good enough and we wanted to try something new; something else.

We couldn't get it.  There are treatments out there and combinations of treatments that had some clinical evidence to show that they could have made a difference.  But we couldn't reach them. I think that was wrong.

Was our consultant scared of being sued by us?  In truth I've no idea.  Do I think this Bill would have changed that - again I've no idea.  But I feel I would have been considerably more empowered as a patient representative if there was a clear structure to work from and I think that would have helped. I also felt that our doctors barriers were sky high from the beginning.

Would he have refused to work with me.  Again I've no idea. I'd like to think not and I'd like to think that he is/was a good man doing his absolute best.   But again I would have had a structure to take to him and maybe that would have helped all of us.

  For those lucky souls with no need of serious treatments for cancer or other illnesses, this may all sound like a pretty depressing subject.  Best avoided.  But we avoid this subject at our peril.  If you or one of your loved ones gets a rare cancer - or rare illness - or even the wrong kind of common cancer -you will have a big problem. If the pharma industry doesn't see you as a lucrative option, you are going to have to rely on your doctor being firmly on your side and maybe one day working with you to access one of those "imperfect"  untested treatments. It might be all that your left with.

I've met Lord Saatchi on many occasions.  He writes the odd letter to me too.  They are beautifully hand written, thoughtful, considered and kind.  I doubt we share many political views; but we are linked by having lost the love of our lives and battled a system that we felt could have been a hell of a lot better.  Friends/fellow bereaved parents are sometimes quizzical/suspicious as to why a "multi-millionaire" is bothering himself with all of this.  Maybe he, like me, is working through his grief.  Or maybe, like me, he feels a duty to do his bit to right something that he feels is so wrong.

Personally I find him a remarkable man.  The way he has poured his time, energy and passion into this piece of legislation.  I believe he's kept going despite his grief; not because of it.  And I thank him for that.

Please help to keep this debate going; whether you are for or against.  It's an important one.

Monday 25 August 2014

The illusion of infinite time

"The illusion of infinite time clouds our understanding of the preciousness of one another.  That value grows in death as we realise all that was lost".

On Grief and Grieving by Elisabeth Kubler-Ross and David Kessler

"Giddy up horsey.  Come on stop slacking.  Do as you're told!  You won't get anywhere in life if you don't learn to take orders."

Ah so she was listening to her Mother's wisdom after all.

Ten year old Chloe taking charge of her imaginary horses in the garden.  Pink coat with a white fur trim.  Blue/Green  eyes fixed in steely concentration (she'd need all that steeliness later). The dimple - right cheek.  Brown curls teased  into two, oh so sweet, bunches. Long slender limbs. A colt like joy of life; joy in the moment.  Felt like we were at the beginning of something.

Shafts of sunlight broke through the sturdy oak trees and fell on her perfect face.  I never imagined in my wildest dreams that our precious time together would be limited.

I stole some memories as I watched half  hidden by the curtain.  I don't think she saw me. It was a beautiful day.  I remember it well.  I wish I'd stayed there all day/all week/all year.  I wish that life had stopped forever that day.

"The illusion of infinite time clouds our understanding of the preciousness of one another....."

Fast forward four years.  Already a young woman; and what a beauty.  I was transfixed; others were too.  The power to grab centre stage, just by appearing.  So comfortable in her own skin; giddy with power.  That holiday in Corsica was perfect.  We were dumped early, of course (way too old and boring), as she took her place with the other teenagers.  Got drunk, kissed a boy who was  too old at 16 (confessed to that one later) and basked in the early summer of youth.

Another four years.  My husband and I stood ashen faced in our hallway.  With irritation I noticed how Ralph the dog had chewed the carpet on the bottom stair. The nonsense of every day life, eh.  As if it mattered.  The sweet, kind palliative care nurse looked away as she handed us a book.  "I never know when the time is right," she looked unsure.  I had the feeling she'd played this scene before.  In contrast we were blissfully unaware of where the storyline was going next."

"Oh thank you. Fantastic.  This will be really helpful"

What a ridiculous thing to say.  I took it breezily as if it were the latest best seller, but I glanced down at my trembling hand. At least my hand registered what was going on. The title evades me; the subject is etched deep into my soul.  How to help your child die - something like that.

I read the book.  I read many others too.  Cover to cover; night after night.  Apparently it's "good" to prepare when a love one is close to death.  I tried; I really did.  I read all the literature; listened to all the advice "Be honest".  "Never hide the truth".  "Allow the person a chance to talk about their fears".

However, do people really know what's best for us families.

I tried.  I really did.  But every fibre of my body screamed that they were all wrong.  So wrong.  I would not give up on my daughter.  Not now; not ever.  How dare they tell me to.  How dare they accept that she would die.  The bastards!!!!  Why weren't they fighting with me.  Shoulder to shoulder.  For God's sake she was 18.  This was so not right.

Hindsight is a wonderful thing; or so they say.  I've still no idea who was right.  Maybe non of us were. Maybe there was no "good" way to help an 18 year old girl die.  What I'm most glad of however is that I did it my way.  My family did it our way.  And ultimately I think that has to be the right way.

As time marches on and Chloe's life slips a little further into the past I feel the season on the brink of change and know that I too must move, flex and adapt just to survive.  Again I read widely; I read avidly; I read books on grief .Cover to cover. Night after night.   Once I was fixated on finding that message/those words of wisdom that will tell me in an nice orderly fashion how to live when your heart and soul have been pummelled to pieces.

Haven't found them yet.

So who am I do write this blog.  To set out to try and show the world that one can live with the deepest and bitterest of pains and still come out triumphant. That (I'm embarrassed to admit) was my intention.  I'm one of those annoying glass half full types.

  I have no answers.  And what I hate most of all is people telling me how to cope with all this.
  They don't know any better than me or you - not the doctors; not the nurses; not the self-help authors. None of them.

So I was about to write today to urge everybody/the whole world to cherish what you have now.  Hold your love ones so close/so tight and be greedy with those moments that can turn into memories.  To remind that we all have limited time; and we may not like what's round the next corner .... and then I thought who the hell am I to preach to anybody else.  My life/my heart's in pieces - and I certainly wouldn't listen to me...sometimes I can't even put one foot in front of the other.

And then I received another email from a bereaved parent and she thanked me for writing as it made her feel a tiny bit "less alone".  And my heart lifted and suddenly I knew exactly what I have to keep doing to keep going and it's very very simple.

In truth I write my blog as it helps me.  It's cathartic.  I do hope very much that it helps you too.  I have nothing of much importance to share.  No earth shattering insights.  For me the loss of my daughter feels like being run over by a ten tonne lorry and then lying there as the lorry reverses and runs over you again and again and again.  There is little respite from the pain.

But maybe sharing the truth is enough.  Maybe that helps us all feel a little less alone.

Wednesday 23 July 2014

Too beautiful for earth ..

"An angel in the Book of Life wrote down my baby's birth.And whispered as she closed the book, "Too beautiful for earth."

Of course words written for the loss of a baby; but it speaks to me too.  

At the time this picture took my breath away.  How could I have produced something quite so perfect; quite so beautiful.  

Leafing through some words I find comfort in this: 

”We can’t know why the lily has so brief a time to bloom in the warmth of sunlight’s kiss upon its face before it folds into its fragrance and bids the world good night to rest its beauty in a gentler place. But we can know that nothing that is loved is ever lost and no one who has touched a heart can really pass away because some beauty lingers on in each memory of which they’ve been a part.” -Ellen Brenneman

Oh my girls.  My precious daughters.  How lucky I was to have two of my own and then to inherit another.  It's only now I really understand the gift I was given.

But still how bitter sweet this weekend was.   I had some of my most precious girls together. How I wish she was looking down at us and seeing that her heart beats in each and every one of us.  

My beautiful daughter Chloe.  

Yet we still live, we still love and life goes on.  There is still joy to be had and it is true that time does something magical.  Oh no it doesn't rob us of the pain.  The pain is too precious as it marks where the loss is. I won't allow it to take my pain away.   But it does soften the blow.  One seems to get used to the loss; as one would the loss of an arm or a leg.  

Sunday 6 July 2014

The second year is worse

My two beautiful babies and their Dad.  I've long since forgiven him for whatever it was I was angry about; don't really remember anyway and it didn't matter then and it certainly doesn't now.  But I can only thank him really for helping me produce these two beautiful human beings.  And he was/is Chloe's Dad and therefore can only be suffering too.

The one on the left has grown into a beautiful, brave and charming young woman who has blessed us further with another two beautiful human beings.  Our Nahla Chloe and Roman Emre.  The three reasons I still want to wake up every morning; and my husband ...... and I'm very fond of the dog too.  And then a posse of really really special friends..... Oh Gawd when I think of it lots of things really.

But that little one on the right she's not here any more; and I still, a year and a half after her death, cannot quite believe it.  The scars may be healing over; but beneath them remain deep bloody wounds of sheer and utter pain.  She always reminded me of Tweety Pie in this picture, you know the cartoon character?  Huge blue eyes, a little rosebud mouth and cutest little face.  She too blossomed into this stunning young woman; all long limbs and tumbling hair ..... and then.  Well the rest is the beginning of the end.

  The cancer story that should never have been.

And my dear readers I have to admit, extremely sadly, that the second year of grief is worse than the first. And I did promise you I'd stay positive and find meaning.  And I will.  But just now I need to face the truth that grief and loss at this level of intensity is as near as it gets to unbearable suffering.  There I've said it and any parent who has lost a child will understand that I'm sure.

We are of course built to survive us humans; and I think the only way we can do this is to go a little mad after the greatest loss of all.  Instinctively, as parents as human beings, we know that the bitterest of all losses is that of a child. So how can we possibly take in the enormity of it all first of all.

No. First the body/the mind, maybe some kind of God, protects us by plunging us into shock.  The world seems to move in slow motion as we stagger through days and take medication to sleep at night.  For me there was this kind of fuzzy feeling that kind of kept the pain at bay.  I truly didn't know how I was going to go on. But I did; and I do.

But the second year is the real challenge.  The shock subsides and folds back to reveal the real loss and the real agonising pain of the most terrible terrible grief.  The madness kind of continues as sometimes I wake and can't remember what has happened; what have I done with my baby; where have they put her?
And once again the terrible realisation that she's gone and whatever I do, wherever I go I will never ever see her again in this life.

The memories are still as vivid as ever; I fear so much the day when they will fade.  People say they do.  But I can easily recapture her slender fingers; one of the daft faces she would make at me; the way she's slide her arms around me in a "Mum you are really annoying, but I do kind of love you" kind of way.  Strangely for a super cool 17 year old, she would sometimes hold my hand in the street.  Can't think about that one without tearing up.  A felt a million dollars with that one.  At other times she would call me, seemingly furious that I wasn't home to cook her tea, but secretly I think she wanted to be with me and under all the bravado of those turbulent teenage years burned a pure and beautiful love for me and our little family.  Maybe we were all just so lucky to have that kind of love.  And maybe that was enough.

And, like my fellow bereaved, we paint on smiles, we go to parties, the cinema, all those normal things and people say "how are you doing".  And we say "oh you know.  It's hard at times; but we're getting on." And of course what we really want to say is "Actually I feel like ripping every shred of my skin off; because just maybe that level of physical pain would take my mind of the emotional agony that I'm trying to live with - just for a second.  And if you just say one more thing to me I will have to break down.  And you know what; I may never ever stop crying.  In fact I may cry so much, that I drown us both in the tears I have here in my heart. And then where would we be?"

But us bereaved we also love kindness as it's a kind of ointment on the soul.  And every time somebody is trying to be genuinely kind - and you will know the ones - there is a tiny flicker of hope and connection, And kindness comes in the weirdest places.  The kids are brilliant; Chloe's friends especially.  They run after in the street to hug me and girls I've never met before regularly regale me of just how funny and witty my daughter was and how much they miss her.  It's straight; honest and God how I love young people.   And then there was a grumpy barrister who I tried not to sit next to at dinner "Jesus I really can't do him tonight".  But, I was so wrong; he was exactly what I needed. Brash, brutal, to the point.  He broke down in tears, the pain etched all over his face when I told him.  His was a quite lovely, honest kind of comfort and I really liked it.

Sorry if I sound a little self absorbed.  I feel one needs to close down a little at this stage and really drown in the grief.  Splash around in it; get yourself completely covered and stay there for as long as you want to. To let it wash over you with all its power; because only when it's finished with you can you ever dream of moving on again.

So there's that little grain of hope again and a kind of message I feel very strongly.  A cliche I know; but the only way out into any kind of sunlit upland (maybe that's too strong an image) is through the very centre of this.  Surely one can only come out a little braver, a little stronger, and a little kinder.

Tomorrow I'm speaking at the International Teenage Cancer Trust on clinical trials.  My message will be simple: this shouldn't  happened for a million different reasons ; lets work together to make sure it stops happening to other families.

I would have liked a different life to this; and now I want other families not to walk my path.

Back on the campaign trial.

God - or whoever else you like - bless you all xxxxxx

Thursday 8 May 2014

Some musings about nothing in particular

 I love looking at pictures of faces; especially when they capture feelings so perfectly.

So this is me.  This is me one year and two months after my Chloe died. Dazed, wonky, befuddled, muddled, deeply vulnerable, and a bit of a funny old mess.

Before Chloe died I would never ever have admitted to such vulnerability. Now, well, who cares.  It's almost like I live in a separate world anyhow.  Hard to explain, but with pain this deep, I seem to have floated up to a different plain.  It's not especially unpleasant; it's just a little less connected to earth.

Self protection I'm guessing.  Part of the process?  Who knows? It just feels kind of weird really.

But there's a certain relief too in giving over to vulnerability.  (btw check out the Ted lecture on vulnerability.  Wonderful!)   In my earlier years I tried so damn hard to craft the image of the tough professional woman - unflappable, cope with anything, full control .. you know the type.  Awful! Miserable! Never really worked; but I worked it all the same.

Almost believed my own hype for a while. Thought I could completely control life just by working harder, trying harder.

Boy did that one blow up in my face.  None of us really have any control.  And ill health teaches you that pretty quickly.  Great equaliser.

I tried very very hard to save my daughter. I really did.  I fought every day for three years.  I'd challenge any parent not to glue themselves to the internet, night after night, in the hopeless quest that just somewhere they will find the information they want to hear.  Something different from the information they've been given.

I had so much information - drowning in the stuff - but no control really.  That is in God, or whoever's, hands: not ours.   I'm sure I'd score top marks in a Mastermind episode though.  Specialist subject: Ewing's Sarcoma.  Jesus - never invite this woman to a dinner party:)

I never found what I wanted.  But I guess I'm glad I tried.  If nothing else Chloe knew the ferocity of my love for her.  She knew how much she mattered.  In my brighter days I feel maybe I was tested; and at the end of the day I came through ok. Not brilliantly; but good enough  It's important to capture this because when you lose a child like this, it's difficult not feel that you failed them in some way.  And I don't think that's a helpful feeling and I have never witnessed a parent who didn't fight like a tiger for the child they knew they were losing.  It's love in it's most pure form.

In my darker moments I feel the most overwhelming sadness for what Chloe has lost.  Those heady days of university; first love; holding her first baby; exciting career; growing old with somebody she loves; family dinners - and all the rest of the wonderful thing we call "normal"life.  We had her for 18 wonderful years; but she's lost all those years ahead.  It is so sad; nobody can deny that.

Everything is changed. That's for sure.

But there are good things too.  I got such pleasure today from calling a friend who's struggled with depression.  I know how important those calls are. And I know now when depression has you in its grip one also has no control.  "cheer up" "pull yourself together" - totally meaningless.  You can't and you just have to let it play out.  I know that now.

 I've made new friends by opening up and I see that these people will become very precious in my life.  I'm so much more of a mess than I was before; but I kind of think we're all a bit of mess anyway and if we all admit that a bit more we may all connect that little bit more.  And connecting is the one thing that makes me feel that tiny bit better.  So a win win situation I feel.

People need people. That's for sure.

Thank you so much to the bereaved who write to me and share your stories.  I hope that my honesty helps you a little tiny bit.  You are magnificent.  To lose a child/or that special person and to just get up in the morning and make breakfast.  That's what I call guts. Write to me any time.  I read everything and will always try and reply

Wednesday 19 March 2014

A continued quest for meaning in despair

“The pessimist resembles a man who observes with fear and sadness that his wall calendar, from which he daily tears a sheet, grows thinner with each passing day. On the other hand, the person who attacks the problems of life actively is like a man who removes each successive leaf from his calendar and files it neatly and carefully away with its predecessors, after first having jotted down a few diary notes on the back. He can reflect with pride and joy on all the richness set down in these notes, on all the life he has already lived to the fullest. What will it matter to him if he notices that he is growing old? Has he any reason to envy the young people whom he sees, or wax nostalgic over his own lost youth? What reasons has he to envy a young person? For the possibilities that a young person has, the future which is in store for him?

No, thank you,' he will think. 'Instead of possibilities, I have realities in my past, not only the reality of work done and of love loved, but of sufferings bravely suffered. These sufferings are even the things of which I am most proud, although these are things which cannot inspire envy.' "

From "Logotherapy in a Nutshell", an essay” 
― Viktor E. FranklMan's Search for Meaning

I am now onto my third reading of Viktor Frankl's Man's Search for Meaning.  A jolly read it is not! But it is another book that allows me to retain some hope that there is meaning in life and maybe it's even helped retain my sanity a little.

 Frankl is a Holocaust survivor and went on to return to work as a psychiatrist. He lost everything but went on to live a rich and compassionate life.  Insightful doesn't nearly cover it. A totally amazing human being. A wonderful book.

Yesterday was a bad day you see.  Generally I fight hard to stay upright; to stay engaged with life to fight on for those I love and who love me - and maybe even a little for me too.  But yesterday the gloom won and I sympathized with the view that "nobody can really live again after loosing something as deeply precious as a child" - and what a child/young woman she was.  That dark view, that any kind of hope, contentment, or just even a tiny glimpse of happiness, just  isn't really possible after all of that.  I understand that - sometimes.

But I want to fight against it too.  It just can't be right.

But the gloom seems to rise up with it's roaring inferno of pain; flinging me back into the darkest despair of those early days.  How did this happen? where's she gone? Why her?  Where is the meaning in this?  I will never see her face again, feel her soft young skin, hold those beautiful slender hands.  Oh her hands. How I miss those hands. The hands I held night after night as I slept beside her in those last weeks.  Glancing back timidly I now realize the importance of those weeks; the magic; the wonder of loving somebody so entirely/ so completely that it absorbed every fiber in my body.

I have never done anything more worthwhile in my life; and never will.

I was/am so proud of my daughter.  The way she coped; the way she still wanted to protect me, her family and friends from the real pain that she must have been feeling.  She seemed to accept that we were ultimately totally helpless and couldn't help anymore.  All we could do was love her and that was the only bit that was so incredibly easy to do.

And now I'm aware of the necessity/wonder of love and kindness; but also it's limitations.  Nobody can take my pain away. I accept that  I can talk to all the therapists in the world; attend all the self help groups, talk to other bereaved parents, read and read, cry and cry....... anything, everything.  But the deep gnawing pain is here to stay; it isn't going anywhere.  And I recall the words: "The pain of the loss is equal to the depth of the pain". And I get it.

There's a huge benefit in seizing the personal responsibility and accepting that nobody can really help with the loss; but conversely that means you can rob them of the power to hurt too.  And this is for you my fellow bereaved - don't let words hurt you; you've suffered enough.   People often just don't know what to say; so all the wrong words come out. We have paper thin skin for now and life isn't really meant for skin this thin.  I believe passionately in the goodness of human beings - I've seen far too many examples to believe otherwise.  Words may be ill chosen; but look for the sentiment behind the words.  Look at the tears in their eyes and know that people do care - it's just none of us really have any control when it comes down to it.

And if there are no tears - well that this their problem.  It most certainly isn't yours.

Now is a hard time for me but I guess life will soften again as it has before.  I look back to Frankl “When we are no longer able to change a situation, we are challenged to change ourselves.”  So I guess that this is now the challenge.  To live with the pain; but to ensure that there is meaning too.  That's what Chloe did and that's what I must too.

I guess a drive that helps me deal with the darker days is that need to turn the pain/the sadness into something more positive/some kind of inspiration - however small.   Chloe was far too precious for anything less. 

Saturday 8 March 2014

One year on.

 for anybody who is bereaved 

Our first anniversary

As my little wise Chloe would say Elizabeth Kubler-Ross "knows s**t".  If there is one person who I would recommend as the "go-to" person for coping with bereavement it would be her  Her writing is beautiful and uplifting.  It provides a familiar blanket to smother the pain and provides signposts to a kinder path. Sometimes, for me, grief feels so harsh and almost punishing.  That softness is so appreciated.  When my pain overwhelms and engulfs me, as it does, I tend to turn to her words for comfort.

So there I was arrogantly thinking that "I don't do anniversaries" and "I don't generally even know what day it is.  Everyday is difficult.  It's just another day.".  Bulls**t!  If only I had heeded Elizabeth's warning that even if we don't acknowledge an anniversary consciously; the sub-conscious will make damn sure we don't get away with it.  She refers to research from very young children in children's homes; children too young to really understand time.  On the day that marks the year that they were put into care; the children nearly always really struggle and their behaviour deteriorates sharply.

Their soul remembers the day; even if they don't.  God, if life wasn't difficult enough for these children.

Back to cancer - I remind myself that children in childrens' homes get cancer too and so do those from third world counties.  Just because you've already won the negative lottery of life and had an appalling start in life; doesn't mean that you won't get cancer too.  Great life isn't it.

  I heard many stories of young people coming in for cancer treatment with no parental of family support.  The mums and dads on the ward would do their best; but what ever happened when they went home?  This idea really haunts me.  This is also definitely worth a look  Just a flick around this site makes me realise how much worse our journey could have been.  Accessing the proper medication for palliative care is a real challenge in some countries.  Jesus how horrendous would this be!

So one year on and my thoughts are coming together.  Our aim, to turn our pain into something inspirational, something positive, echoes in the background.  But there are so many questions.  Chloe was blessed in that she was so loved and so protected.  How can we use this passion, this energy to start our own little movement in her name. How do we help others and where should we focus?  So many people, so many young people, want to help.  All that passion; all that energy.  It needs to build and unite around something with clear objectives.

My background in communications tells me loud and clear "manage expectations!"  Start small and have achievable aims.  Yes we want to raise thousands for research, yes we want to help children in less developed countries.  Yes, yes, yes!!!  I flinch at my arrogance.  We just aren't big enough for that.  And yet "it takes just one person to change the world" - and even if we change the world in a tiny tiny way - make life a little better for just one child, one young person - maybe that's enough?

So Chloe's second Mum, Rosemary Ridgeway - my rock throughout the whole of Chloe's illness, death and way beyond - me and some of Chloe's dearest friends have set up our Foundation  Create for Chloe.  Our thoughts are taking shape and here are some of our musings/observations - Cancer Research has an appalling record for investing in cancers that affect young people and children.  Reminds me I need to cancel my monthly payments.  Teenage Cancer Trust is brilliant as are others; but  IMHO, larger organisations sometimes loose the passion and purpose that they are set up for and start serving the staff more than listening to the people they are trying to help. This isn't a criticism; just a fact of life.  So we want to start lots of conversations - with our local hospital The Royal Marsden, other charities big and small - where can we pump prime other projects that are failing because the funds are drying up - speak to the children, the teenagers.  Cancer is expensive; very expensive.  I've seen families loose their child and then their house because they had to give up work to care for their child.  I've seen children struggle to afford a prom dress as Mummy can't work any more.  God I've seen so much additional distress because a family was facing financial hardship on top of everything else.  We want to start by listening to people and seeing where our passion, our energy and our funds can help a tiny bit.  And I'd love to hear from anybody who reads my blog - NO project is too small - pls email me on you have any thoughts.

And in the meantime we will carry on "banging the policy drum".  Treatments that are 40 plus years old; access to new treatments denied to children and young people as they are "too risky" or "not commercially viable", 900 new drugs coming down the pipeline for cancer; NONE of these are for the cancers that affect children and young people....... So much to do.

I read about another small cancer charity the other day and it's catch line was "A small charity; with a big heart".  This sounds just perfect to me.

Keep you posted

Tuesday 4 March 2014

What if she was mine - House of Lords Feb 24th 2014

What if she was mine?

Photo: #createforchloë 󾬓󾬕󾬑
Team Chloe at the House of Lords 

This is my speech from the House of Lords on Feb 24th 2014.  I spoke in support of the Medical Innovation Bill.  The Bill has been launched by Lord Maurice Saatchi following the death of his beloved wife Josephine Hart.  Lord Saatchi spoke at the event as did Chloe's amazing friend Michael  (Mike)Thomas.  I will ask Mike to post his speech too.  It was an amazing day and there was a feeling that support is growing fast for a whole new approach to the treatment of rarer illnesses; such as the type of cancer that Chloe had.  Very very touching that team Chloe was there for support: Sarah, Chloe, Mike, Rosie, Liam, Sophia and Jael.  That felt so special and so important.

You can listen to the speech here.  Sorry about the quality. Better quality version coming soon.

Today - out there somewhere - a teenage girl is about to hear the worst of news. Whilst her friends fret about which hot boy fancies them; or how popular they are on the latest social media site; this poor girl will be told that she has cancer.  And her world, and that of her family, will fall apart.  
Imagine the unimaginable…    ask yourself what if she was mine?

Seven people between the ages of 13 and 24 are diagnosed with cancer every day in the UK.  Leukaemia is the most common cancer in this age group followed by Central Nervous System tumours.  The cancers that this group tends to get are very different from the type of cancers children or adults get; they are also nearly always the most aggressive.

So, back to our teenage girl.  Today will be the worst day of her life - what lies ahead for her?  If she’s “lucky”, and I use that term ironically of course, she will have Leukaemia.  The treatment will be horrendous; but she’ll have a good chance of survival.  The treatment of leukaemia has been one of the few success stories in the cancer world.  In the 1970’s Leukaemia was a certain death sentence; but now almost 90 per cent of children and young people survive.  

But what if she has one of the other cancers; such as bone cancer or neuroblastoma?  The horrors that lie ahead for her here are beyond your imagination.  Let’s go for bone cancer.  There are two main types that affect teenagers and children: osteosarcoma and Ewing’s Sarcoma.

And the problem with bone cancers is it’s in the bones and - if you’ve ever broken a bone yourself or had any kind of bone issues - you will understand why bone pain is known as the worst of all pains to have.  Relentless and agonising and it’s only the really heavy duty painkillers that have any effect.  

Despite this, most adolescents with bone cancer are dismissed by their GPs as having a variety of other illnesses from growing pains to juvenile arthritis; mis-diagnosis and delayed diagnosis are very very common with teenage cancers.  I guess teenagers just aren’t supposed to get cancer - and GPs are as guilty of that bias as the rest of us.  

Once diagnosed they are given a cocktail of various drugs. Methotrexate, ifosfamide and etoposide- common chemotherapies in bone cancer - are known as the worst available. The drug cocktails they use for bone cancers, and the accompanying  short and long term side effects, wouldn’t be out of place in a script for Silence of the Lambs.  

Complete hair loss at 15 must be so hard.  But believe me that’s the easy part.  Life threatening infections, weeks in isolation in a hospital room with no window, premature and irreversible menopause, heart failure, kidney failure, nerve damage, shingles - that’s a bad one - and to top that all off, the treatment itself may create a secondary cancer.  A doctor once said to me that early 21st century chemotherapy treatments will be regarded by future doctors with the contempt that today’s doctor’s reserve for leeches.  They kill the cancer alright; well in the short-term at least; but they kill a lot more as well.  

And as if they didn’t do enough damage to the body; they kill the spirit too.  

Once again I ask you to imagine what if she was mine?

A bone cancer diagnosis when you’re only 15 isn’t the best of news.  If you’re lucky you’ll avoid amputation of one of your limbs.  But even if you do, the brutal reality is that your chances of survival are pitifully low.  You may naively expect your doctors to roll up their sleeves and assure you that they will throw everything they can at this.  You’ll expect no  stone to be left unturned in trying to find you a cure.  You’ll think any promising new treatments will be made available - if not here, then maybe in the US…...

But this won’t happen!  Your doctors will probably avoid your eye contact, and sometimes even avoid you altogether!  Your doctors will talk about processes and protocols.  They won’t tell about a promising new treatment that was pulled years ago by a pharmaceutical company because kids/young people’s cancers just aren’t commercially viable. The story of a drug, an IGF1 inhibitor called Figitumumab is an especially good example of this disgraceful behaviour.   Look deeper and you’ll find that the treatments they’re proposing for you are over 40 years old; and the protocols are over 15 years old. Few new treatments are available and - even if there are any - you are going to have to be extraordinarily lucky, or have enough energy left and the right high level contacts, to get on to them.  God help you if you are running short on either.

The few clinical trials that bother to include the rarer type of cancers that young people and children get will, almost without exception, have bizarre entry criteria that make no clinical sense whatsoever.  Such as a trial for a cancer that predominantly affects people aged 15 with a lower entry criteria age of 18.  You couldn’t make it up.  

You may well look into your doctors eyes and shout, scream, complain, plead and beg.  He may well be sympathetic; he may well be very kind and really care about your child. But he may well do absolutely nothing and rest wearily back on a tried and tested extremely conservative system that has some pretty strong evidence to support the fact that it is very unlikely to work.

That child was/is mine.  Her name was/is Chloë and she died a year ago today this Friday when she was 18 years and one month old.  She was popular, self assured, charming and very very beautiful both inside and out.  She was blessed in that she was loved so much and her death has left the deepest hole in so many people’s lives.  A few of those people are here today.

Sometimes I dare to imagine the imaginable.  What if six months before Chloë died, in August 2012, when all hope was almost gone, she had been entered into a Special Category that doesn’t exist; yet desperately needs to exist.  A Special Category where all bets were off.  All the rules no longer apply and all the prudent methodologies of the medical profession and indeed the Hippocratic Oath itself need to be swept off the table and left to smash onto the floor.

Once Chloë had only got six months or so left to live, how could any radical potential new treatment have been defined as too risky or too dangerous?  These words - risky, dangerous - are utterly meaningless in this context.    

What if the doctors tried something different; something new, something promising?  Chloë may well have died anyway.  I accept that.  But surely what she would have left behind would have been more clinically valuable to other children to other teenagers - are most precious commodity.  And for us maybe we could have kept a little faith a little longer.

Of course we didn’t want her to suffer more.  Although it’s important to remember that dying of cancer isn’t a walk in the park.  And there is always a risk of making things worse. I know that.  And of course things have to be done with caution and with great care.  But there are drugs coming down the pipeline that are showing huge promise - Professor Andy Pearson at the Royal Marsden refers to now as the golden age of drug development - we desperately wanted hope; Chloë desperately wanted to live.  She didn’t want the medical establishment to give up on her, and neither did we.

She didn’t get those new drugs.  So, the only medical advance resulting from Chloe’s death was re-proving for the zillionthth time that an old protocol with old drugs, doesn’t work. No useful contribution to medical science there, then!

There’s a huge problem treating rarer cancers and rarer illnesses - the very fact they are rare means that there isn’t enough data/enough people to test new treatments.

Even if Chloë had died anyway whilst on some new esoteric untested and ‘risky’ treatment, her death would then have helped advance the science in that new arena.  Her death might then have given a greater survival chance to the next poor girl who gets diagnosed with cancer today.

We desperately need this new Special Category so that doctors can try new radical things when they know the existing drugs don’t work.  We need to support this Medical Innovation Bill.  It is the right thing to do.

I cannot have my dearest wish to have my daughter back with us.  So I’ll go for my second wish to use my family’s story to ensure that the next Chloe who comes along, and so sadly she will, will have a better chance of life.

Thank very much for your time.