Thursday 26 December 2013

A Chloe-less nightmare Christmas

Christmas; a time for reflection and a total nightmare

I always said I'd try and write honestly as I  share my journey.  Firstly because it helps me to write and secondly I want someone somewhere to feel a tiny bit better because they know that somebody else is feeling things that are just too unpalatable to share with a general audience.  Isolation is a big problem for us mourners.  Worse of course when it's a child.  Most people just can't deal with the enormity of that kind of loss. The simple truth is they just don't want to keep hearing and quite frankly I don't blame them.

This time of year Christmas parties, which I used to love, have become no-go territories.  "How many children do you have:",  "how was your year" such harmless questions feel, in my situation, like being stabbed with full force into the guts.  It is agony.

And then, God forbid, I answer and say "pretty crap year actually. My 18 year old daughter, the love of my life, died of bone cancer one month after her 18th birthday.  Before that she spent three of those tender, wobbly years of adolescent going through every single torturous medieval cancer treatment all of which was actually devised 40 years ago ...........

Those three years were characterised by loss.  Loss of hair, peace of mind, fertility...... and many many other things.  Those losses were hers alone to bare.  But the final loss is ours.

Bit of a conversation stopper however you look at it.

So no parties for me this year.

I haven't written for a while as I didn't have anything interesting to tell you.  Life had kind of settled into a more constant gnawing emotional pain; interspersed with odd moments of contentment and maybe,even, a glimpse of possible joy.  The happy moments have felt so vivid in contrast to the constant background of grim grief.  Loosing a child in not for the faint hearted.  Believe me!  I have needed every ounce of strength and energy just to get up each morning.  The journey to some kind of distant sanity is as harsh as grinding, as terrible as one can possibly imagine.   Can I get there?  I don't know.  Do I want to get there?  I don't know that either.

I'm often struck by an overwhelming to desire to press an imaginary re-wind button.  Please could I start again.  Please could I have another life.  A life that doesn't hurt quite this much.

I remember I couldn't believe that childbirth hurt quite so much.  Why did nature make something so natural hurt so much.  Never got that.  But this! Oh this is in a completely different league.  Sharp, stabbing, deep, gnawing.  No location, just everywhere.  Although the tenderness in the heart and in the belly is the worst.  My child who grew in my belly.  My child who was part of my heart. My child: my child.

I like this picture.  It captures my mood and that makes me feel less isolated.  The tear; the hands cushioning the face.  The hands gently stopping the words.  The words don't help and sometimes  they feel too ferocious even for me to bare.

Christmas is not a good time for the bereaved. So obvious; but so true.  Christmas is for our children so whatever are we left with when they aren't here?

Again I lean on my wonderful friends and I wonder how much more I can keep taking.  I feel greedy for love have a paper thin skin to any real or imagined hurt and know I have lost a huge hunk of my spirit.  A faded version of my former self I fear.

I don't know what happens from here.  The first Christmas without my daughter really really hurt. More than I had imagined. I only hope I find a little peace in the New Year and move on with my plan to do something marvellous in my survival and in my daughter's name.  She was too magnificent for anything less.

Oh and one thing us bereaved need to say our loved ones name.  Please don't turn away.  For me it is the most beautiful name in the world Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe, Chloe.....

Aw now that feels a little better.

Merry Christmas all and my heart is with you if you too are suffering some loss this year.  I hope we all feel a tiny bit more positive in the News Year xxxxx

Saturday 28 September 2013

Seven months on; some happy memories

Ah I remember it well.  Portugal 2008. We'd been to the Southern coast with my friend Alison and then travelled up to stay with my brother who lives in Lisbon.  There was a sweet, gentle, tender wind that cooled the hot sun. It seemed to whisper that life could be so lovely, full of potential, full of possibilities.  It is true; but it was also a lie.
Was it the calm before the storm? Was I being given one last sip of a nice, simple life?  Not sure, but I look back wistfully on a perfect holiday; on a perfect life.

Chloe was 13 and Hannah 16.  Cancer hadn't touched us then. I was happy. Of course I didn't know it and  I still greedily hungered for more.  Just didn't realise that there isn't more; never was, never is and never will be.  A healthy family on holiday - that's as good as it ever gets.  If only I'd known.

And now my eyes rest on all I have left - a picture of those beautiful green eyes, the thick black eyebrows that she hated and once shaved completely off (Chloe never did things by half) those lovely cheekbones, both my girls inherited these from my beautiful Irish Mother, and that sweet smile.  But more than all of that I see my baby daughter's spirit - so fierce, so intense and so ready for life.

My Chloe was never an easy child; neither of my daughter's were/are.  There was a wild Irish-ness to Chloe; and there still is with Hannah.  I don't think I breed easy children.  But boy was she wonderful.  Passionate, complicated and a little bit mad.  Emotions would whirl around the house with Chloe - you'd never be in any doubt that she was there.  Screaming about her domestic injustice one moment (having to tidy her room), fighting her sister and Simon and whoever else happened to be in her way the next and then squeezing up next to me on the sofa saying matter of factly  "Mum your nose looks like a triangle; but I really love you".

There was a fire in her that made her fascinating to watch and then a slightly other worldliness that held an irresistible magnetism.  She really was a glorious child and I was a lucky lucky Mother to have her.

God she's left a bottomless hole of grief in all of our lives.

So seven months on and life has moved on and the grief has moved from that physical gnawing pain that leaves you huddled foetal like on the floor - howling like a seriously wounded animal.  It really is that bad. For me, at least, the hard edges of the pain have softened a little and this makes life a tiny bit easier to endure.

But I know for sure that I will never be nearly the same again; but nor do I want to be.  My soul and heart have been through the equivalent of a head on collision and the scars are deep and lasting.  Spiritually I've moved into a kind of other world; a world where I feel more detached, a little more comfortable maybe, a World where only love and kindness matter to me now.  How arrogant of me to say I'm a better person for all of this; but I feel like a better person and that's just my truth.

And the good thing is what is left from the wreckage is a stronger ability to love and to try and live in the present.  The future, with first anniversaries looming is far far too painful to even contemplate.  I love deeply, madly, wholeheartedly.  I love my beautiful angel in heaven even more than I loved her on earth.  I love and feel the most intense gratitude that I have another wonderful daughter and that she has given us all the best Grandson in the whole world.  I love my dear husband, my rock. And I love, already, the little baby Granddaughter who will be joining us at Christmas.  And I love my dear friends who have walked with me and still remain steadfastly by my side and in my heart.  I would do absolutely anything for every single friend I have.  They are so precious.  I've cleaned out my friendship drawer and those remaining will be with me for life.  Of that I'm absolutely sure.

Human beings really can be the most wonderful things.  And anyhow I ignore the ones who aren't - they are kept firmly out to my life nowadays.  No time for that.  Another positive change I feel.

Wednesday 25 September 2013

Andi's Army - people power yipee!!!

In a campaigning mood at the moment.  So shocked by this story.  Please, dear readers, take a look at this.  Andi is beautiful, fearless and spirited - she's 37 and has ovarian cancer.  She has been denied the same drug that Chloe was denied - Biomarin's PARPi Inhibitor. The evidence for this drug is far stronger for ovarian cancer than it is for Ewing's - unbelievable that she can't get it.  Imagine if this was you, your sister, your daughter, your friend!!

On the site you will also see the appalling attitude of Biomarin's CEO. PR disaster or what!  So sadly this is an attitude I came across time and again.  Almost an attitude of how can we block the patient, ordinary people don't know anything, they just need to accept what's going on.  Patients, the plebs that they are, seem to be quite annoying for the medical establishment to deal with.

Well there's a lot of us plebs, or "spoilt brats" as Biomarin may like to refer to them as, who are going to continue to be very annoying.  And thanks to our wonderful internet we are joining forces across the World.

I know my little blog is read across the World in countries such as Vietnam, Poland and India.  So pleased. We can join together and we can help each other.  Some countries, of course, have it far worse than we do. An Albanian friend is still paying back debts incurred by all kinds of  treatments that he opted for in a desperate bid to save his young son from cancer.   His son died.  God, life is really c**p sometimes.

But I think us "lucky" ones Europe/US need to lead from the front and shine the spotlight of publicity in what is going on the worldwide medical establishment.  For example, did you know that Gleevec, a drug that has helped to transform survival rates in childhood Leukaemia, took 10 years to develop as the drug companies were arguing about the typeface of the logo.  Wonder how many children died in that ten year period - guess that's a stat that we won't see published any time soon.

 Andi's Army got in touch with me through my blog and so happy to help in any way that I can.  Could be that the Huffington Post is going to cover Chloe's story to support Andi's. Can't see how anybody can resist such a beautiful pair;  both denied the same drug.

I totally agree that we need to be extremely careful in trialling new medicines and that maverick doctors/researchers need very strict guidelines to work within.  It's true the side effects of some drugs can be far worse than the illness itself.  I've seen evidence of that.

BUT chemotherapy and radiotherapy are not a walk in the park and the list of side effects/late effects do not make easy reading - including the very real risk of a second cancer caused by the treatment itself.  But the pendulum has swung too far the other way and it seems that we are left with a broken system where everybody is terrified to innovate and try something different - hence they fall back on the safety of tried and tested protocols.  In many instances these protocols offer really strong clinical evidence - just what doctors want.  However, the evidence is often "this treatment will be totally awful and is highly unlikely to work.  But it's the best we've got".  Great !

Treatments and outcomes for most life threatening illnesses have stalled.  I'm a passionate supporter of Maurice Saatchi's Medical Innovation Bill about to get its second reading in Parliament.  A little plea to all my UK readers please write to your MP and urge him/her to support it.  The Bill will not provide the magic solution; but it will help to create a better system where doctors/researchers feel more able to innovate.  And this is critical.

Thoughts and prayers to the family of the very brave campaigner Les Halpin who died last week.  His Access to Medicine Campaign is highlighting very similar issues.  Les had the horrendous Motor Neurone Disease and spent the last few years of his life campaigning for better treatments/access and choice for those with terminal illnesses.  A very courageous man.  So hope his campaign continues.

Monday 23 September 2013

"A long life is not good enough; but a good life is long enough"

“A long life is not good enough, but a good life is long enough.” 
“The goodness of life cannot be measured by the length of the years, but by how we live those years.  This goodness is not about what we amass, but what we give; it is not having more, but being more, for in the end, our lives are judged not by the businesses, houses, and portfolios that we built, but by the lives we touched and made better.” 

Rabanit Jungreis

Chloe was such an inspiration in life; and she remains so in death.

Cancer is a really mean disease and especially so when it strikes at such young people.  Please take a look at Maurice Saatchi's bill.  Nobody knows when cancer will strike them or a loved ones.  xx

Everyone pick up your Croydon advertiser for Chloƫ!! #inchloesname #saatchibill #change

Tuesday 27 August 2013

It's a funny old place

It's a funny old place: the world.   Once it's been seriously rocked it's very hard to get one's footing.  Just as you think you're on slightly firmer ground; the thick black mud pulls you back down and it's like you never got out in the first place.
It's a funny old thing : grief.   Once it's been unleashed one never really knows where it's going.  It's really hard to get a handle on it.  So chaotic; so very unpredictable, so angry, so brutal.  A bit of a design fault on God's part; if I may be so bold as to say so.
Six months since my child died.  Six months of very strange emotions.  Six months of hell; even six months of heaven. Six months of spinning like a top and wanting the spinning never to stop.  If it does it reveals the deafening silence and that is definitely the worse thing about grief.  It strips you bare, isolates you from the world, makes life a thousand/ a million times more difficult - but it is the silence that is the hardest to bare.  Knowing I'll never hear her voice again, never be told to "get a life", that I'm "so embarrassing" that she wants a "shakeaway" just as I'm heading home.
Oh what I'd give for a minute/a second to hear her, to hold her hand to see her whisk off into the night with her friends - too much make up, half a bottle of my Channel tipped over her beautiful body, high heels, short skirt. The beauty of youth up against the hideousness of cancer. A real contrast that one.  
Not fair; but who's listening anyway.  It's a funny thing life.
And then just when you feel it's too dark to bare; some delicate shoots of hope tear little holes in the gloom.  I find if I nurture them they get a little stronger; a little less fragile.  I almost feel them taking root and showing a way that has some hope.  And with those little shoots come lovely gentle memories - like balm on the angry bloody sores of grief.  Such a beautiful, funny, tenacious, spirited young woman. I couldn't have been a prouder Mum.  And that's good. Isn't it?
On Monday I sailed down the river.  She was with me all the way.  I swear.  I feel her energy and it sits and stirs around my heart.  It's still restless, agitated and hurting - but the energy is there.  I guess the shoots will take hold when I allow the energy to rest quietly, softly in my heart.  Maybe then she can finally come back home.  Maybe we will both come home together and maybe, just maybe, that's where the peace will finally come.

Night night my lovely lovely Chloe x 

Monday 19 August 2013

The tears are coming

I think you have to pay for love with bitter tears.

I cried tonight.  What,your daughter's died and you think that this is news?  Isn't it more like news if you haven't cried?

I've no idea really; but I see the point.  I don't find crying easy. The worry is, I think, that if I start I really may never stop.   Has anyone ever run out of tears?  Is it possible? Will I be rushed to hospital (just for the record don't anyone dare take me to one of those places. I'm seriously done with them). But what will they do if I run out of water because I've just cried the biggest, roundest tears that I've ever seen.

I think they've been waiting; these tears.  Waiting to feel safe so they could creep out and try and drown me whilst I wasn't watching.  Revenge of the locked up tears - that would be about right.  Crafty little buggers. Maybe God hasn't quite finished with me yet.   I'd held them back for so long they're taken their revenge big time - they're huge!  they are really salty! they burn my cheek, make my eye sockets swell up to the size of tennis balls and my eyes have totally disappeared.  I can hardly see, my throat is so swollen I can't swallow or talk and my nose so bunged I have no effective way of taking that breath.  I now look so hideous that I dare not leave the house.  Room arrest - that's all I have left.  Life just gets better and better.

And then later - a few hours later - the tears gradually stop and I'm overwhelmed with a deep sense of exhaustion.  I could sleep for weeks and weeks.

I read later that this is what grief does.  It floods out your system with these wonderful little pearls of water that help you to open your soul and let the gentle salty water wash a little of the pain away.  Feels hideous at the time; a little tiny bit better after. 

Tears probably are a good thing.

The reason for my tears is the loss of one of the two best things in my life.  The person who inhabited half of my heart.  A pain too hard for most people to contemplate.  And me, such an ordinary being, having to deal with the full tsunami.  If only I were a super hero - or one of those amazing brave selfless people who die jumping into rivers to save another person's child.  Sadly I am just ordinary and the grief, I'm really sorry to report, fastens its grip.  The shock slowly recedes and was is left is a open wound bleeding profusely and you can feel very drop of blood.  Can I cope with this next stage?  I hope so; but it's very very hard.

Today my grief was sparked by the death of Darah.  I've never met Darah, she lives in the states.  But I follow her story and talk to her Mum.  She reminded me of Chloe. I think she was the same age.  And, like Clo, she was so beautiful and so spirited.  She fought and fought - but lost in the end.  Her family will now walk my path and this is what really hurts me.  Somebody else in this unique kind of hell.  I'm so sorry for this.

I'll try and cheer up tomorrow.xx

Tuesday 13 August 2013

I'm really angry today

Aw this picture made me laugh; despite the fact that today I'm actually very angry.  So firstly what's so funny?  Well Chloe and Hannah used to tell me I look like Marge from the Simpsons - well actually they said it when I'd had my hair done.  Cost me an absolute fortune actually - best hairdresser in London.  But every time I'd come home they'd call me Marge.  Little monsters.  But I feel strangely fond of, and attached to, Marge. So I thought I'd check out her angry face - strangely looks just like me:) - well today at least.

Now for the anger.

-  there's a programme on tonight about a Mother who didn't want her child to be given radiotherapy for a brain tumour.  I'm not going to watch it; so I guess that everything I say will be from a base of ignorance.  I usually don't like commenting on things I haven't seen; but I'm grieving so what the hell.  AND in this respect I do speak with the "benefit" of some experience.  Apparently this poor Mother ran off with her son because she was scared of the treatment (check out the side effects of radiotherapy to the brain - doesn't make easy reading).  So far this sounds perfectly reasonable to me.  However, sounds like the side effects of the brain tumour would have been worse -  basically  death.  Eventually the Mother was persuaded to come back and have her child's brain fried; thereby avoiding death.  The Mother was also into "alternative therapies" and believed that the current health system was full of self serving individuals who were quite happy to maintain a status quo,  A few highlights from that status quo:  no new treatments for many childhood cancers for 30 years, no priority for seriously ill children and a general feeling that parents should just be grateful for the treatments they can offer.

I hope with all my heart that nobody I know and care about will ever ever have to visit this world. It is harsh, cruel and often seems without any common sense or compassion.  Believe, if you want, that if your child got ill all the stops would be pulled out to give them the treatment they needed.

But the truth is it won't and you won't be able to do a darn thing about it.  Health professionals will treat you with a kind of kindness but basically you will be dismissed and avoided.  Everything you say will be filtered though a lens of "poor love she's in denial and  just can't accept what's happening".  I can imagine what it feels like to be a person dealing with serious mental health problems - I think you'd get the same kind of reaction.  AND God forbid if you ever even mention alternative therapies or any "anti cancer" foodstuffs - then you really are labelled a "nutter".

Just for the record I don't do alternative therapies, anti-cancer diets, healing or anything else that isn't "conventional".  I like science and I like facts.  But I do understand why people do.  I totally understand when conventional medicine isn't giving you any answers and is treating you like a sub-human - you'd try anything.  It's your child for Christ's sake!  What would you do?

I dare say the tv programme will play the usual media trick of using black and white characters. Distraught Mother into alternative therapies = nutter.  Doctors and nurses doing their best and eventually "common sense" prevails.  Sadly it's all a little bit more complicated than that.  The medical establishment has a lot more questions to answer than that - and the worse thing is they all know they do too.

So a little plea to all my dear readers.  Please talk about, think about, find out about childhood cancer/young peoples' cancer.  The rates are going up and outcomes have stalled.  I know that life is hard enough without thinking about anything quite so depressing; but we do need a public debate about this.  I can't bring my beautiful daughter back but I hope to God that I can do a tiny bit to give another child a better shot at beating cancer without the terrible debilitating side effects caused by many of the current treatments.  PUBLIC AWARENESS is what is needed - otherwise the industry will carry on doing what it's doing. Our beautiful children matter far too much for that.

Love to my dear friends Dana and Darah from the US - you really are my heroes.

Thanks to a dear old friend who wrote to me today.  Your words were beautiful and really lifted my spirits.  Heartfelt words are sometimes all you need.

Thursday 1 August 2013

Message to friends

I loved this extract from a piece written by Nigel Dudley in The Telegraph.  He'd lost his 22 year old son - just suddenly .  No reason - pure fate.  

Here's the quote:

"For example, our neighbours would bring us food, hand it over and make to leave. How could they know that the last thing we wanted was to be left alone? So we had a rule. We told people:

 "We talk a lot, we cry a lot and we drink a lot. Come and join us."

I love company and I adore my friends.  I agree that being left alone to grieve is the last thing in the world I want.  I'd much rather inflict my, often very miserable, self on others :)  

I definitely agree with advice to not isolate yourself if you are grieving.  People are desperate to help.  I know I want to help others.  But people just don't know what to do.  They need directing.  

Nobody knows what's around the corner and life has proved to me how hideously unfair it is.  I hope I can give back to others the love and care my family has received during Chloe's illness and after her death. People can be very good indeed.  One of the very few good things to come from this, I hope, is that I am far more compassionate than I ever.  Actually, dare I say, I like myself better now; it's the injustice of the world I'm not so keen on. 

Anyway I love all my friends and family (and that includes my young friends and "adopted daughters" I've stolen from Chloe)  dearly and I will do anything I can for you.  Sorry I'm a miserable mess at the moment; but I'm working hard at it and I care about you all very much.  

Bottle of wine or two here every Friday night .....

Love you Chloe Jane Drury - xxxxxxxxxxxx

Friday 26 July 2013

Altered perspectives

I'm doing a lot of reflecting just now.   I like reaching out and communicating; I hope it helps someone somewhere also struggling with grief - or just other crap that life tends to chuck at us.  When people reach out to me it makes my pain a little softer.  When I see tears in a friend's eyes when they speak about Chloe, I feel a little less isolated.  Reaching out is good IMHO.

I guess it's a given that this kind of loss is agonising.  I love these words by Emily Dickinson - it seems to sum up my loss quite well.

"I measure every grief I meet
With analytic eyes;
I wonder if it weighs like mine,
Or has an easier size.

I wonder if it hurts to live,
Or if they have to try,
And whether, could they choose between,
They would not rather die.

The brutal fact is after this kind of loss death holds no fear.   But, on balance, I think that this is rather a good thing.  It allows freedom and  enables me to connect with other bereaved people.  I hear time and again of how isolated people feel in grief, of the hurt caused when somebody crosses the road to avoid a grieving person (let alone somebody who's lost a child) - it's like grieving people are a race apart.  As if their pain and misery is somehow contagious.  Reminds me of certain attitudes to older people - again as if they were a race apart rather than just us  - only a few years down the line.  We need to remember we are all human and if we don't get old we die. Simple really.

Just a warning, if anybody I know tries to avoid me I'm going to chase you down the street! (joking, of course:) )

Anyway this is a long winded way of saying there is a kind of positive feeling that emerges after facing the "ultimate tragedy" In the words of Ronald J. Knapp from "Beyond Endurance"

Those parents who have managed to recover some meaning tend to develop a sense of omnipotence and invulnerability relative to life's other hardships.  They come to feel that there are simply no obstacles that they cannot overcome.  They believe that they have met the ultimate challenge to their own survival and they have conquered it.  In the process of rebuilding, it tends to become obvious that the survivor has indeed encountered the ultimate tragedy and survived.

I certainly feel toughened, more resilient and in some ways totally fearless (I hope not reckless).  I've had my heart ripped out that's for sure; but I'm still here and life seems entirely different.  I wish with every fibre of my body that it wasn't so; but it is and while I'm still here I have to make my life count.  After all when I do join Chloe, wherever she is, how am I going to answer "what did you do afterwards Mum?".  I want her to be proud of me, for her to know that her death was so very significant that it changed me in the most fundamental way.  And the truth is it has.

Last week I spoke at the House of Commons, mainly about the numerous injustices of the treatment of young people with cancer,  and somebody asked me "are you scared?" Scared of speaking? Scared of telling people that is is an utter outrage that young people's lives aren't being prioritised in the healthcare lottery? Scared of telling the truth to people who should know better? Are you joking?  Scared is sitting in a hospital consultant's room and the doctor telling you that you are about to loose one of your main reasons for being.  That's scared.  In comparison everything else pales into insignificance.

So my life without fear beckons.  And I have a flicker of excitement when I think of how things can be when you don't sweat the small stuff.  If only it hadn't have taken the death of my child to allow this freedom.  What a huge waste of time those silly worries were.

Hence the quote I'm looking forward to going to places I've never been before - and hopefully doing some good along the way.

Tuesday 23 July 2013

Beauty and hope

I found beauty today.  For the first time really since my daughter died.  (The world seems hideously ugly after such a brutal loss).  But today there it was.  Plain to see.  Pure and simple beauty.

There it was.  The most perfect pudgy skin, huge saucer like eyes tipped with thick pitch black eyelashes. Oh the eyelashes - so familiar.  So like Chloe's.   And the little grin; revealing four or five tiny stump like teeth.  There he stands totally oblivious that he has turned some light back on in my world.

Oh our little Roman, my one year old grandson, you really are the most special child.

 I take time to watch Roman.  He enthrals me in a whole new way.  He's just a miracle - perfect.  He pulled all my pots and pans out of my cupboards today; breaking two of my favourites.  Did I care? Heck no!  He threw my fire logs on my new rug.  So what!  He threw all my new Christian Dior skincare in the bath - admittedly that hurt a little - but I got over it.  Finally  I  have leant not to sweat the small stuff.  I get it - there isn't enough time.

I have a whole new little person to love with every fibre of my body.  Just like I loved Chloe.  Just like I love Hannah.  Being a grandparent really is all it's cracked up to be.  It's the best!

You see I've found a tiny  glint of light through my deep dark misery.  After such loss one can, if one wants to, look at things with new eyes - I think.  I'm so aware of death; that sometimes it makes life shine a little brighter.  Before I took my two perfect daughters for granted; now I marvel, really marvel, at anything that has the power to push through the grief.  Sometimes, not often, things can look more glorious than they ever did before.

Chloe's been dead for five months now.  The grief started way before she died.  Maybe it even started when she was diagnosed three years ago.  Strangely the five months feel forever; and the three years  like it went in a flash. The anticipation of her death meant we lived so intensely those three years - in some ways I lived the best way I ever have?  Maybe I was the happiest I've ever been?  She really was the most wonderful daughter and she was my friend. We had such lovely times together.

  The grief feels a different shape now - still solid and heavy but the jagged edges are softening ever so slightly.   I miss her much more and one of my biggest fears is that the memory of her is pulling away, like a little rowing boat drifting off into the distance.  That upsets me more than anything.  If only somebody would give her back to me.   Maybe it's the pain that keeps it close. If that's the case I'll have the pain back.  But I guess it must be our need to survive - the very sharpest edges of the pain are starting to soften just a little.  Life is a little more tolerable - and interspersed by a few (not many) of moments that are really worth living.

I know there are some other bereaved people who read my blog.  I don't dare to ever offer advice; I hate it when people tell me how I feel or how I will feel.  To me grief is so personal and is between you and the person you've lost - a new kind of relationship.   I loved my child so entirely that my grief is very simple - other types of grief can be far more complex and  in my experience  not always less painful.  All I know about grief is what I've felt and what I continue to feel.  I'm one of those irritating "glass half full" people - so I knew I'd want to focus on trying to find the hope.  And I just want to share my experience.  I've suffered the worst of losses and been right down into the pit of despair.  I couldn't see a way out; many times I didn't want a way out.

But just now - five months in - there are more little shoots of hope and a few of those wonderful moments.  I never believed that would ever happen  I know I still love with all my heart; and I know I am loved by my dear family and friends.  I will live with the terrible emotional disabilities caused by my "tsunami of the soul"; but somehow I can see a little ray of life.  I will always be deeply deeply wounded but I feel I will shape out some kind of life now.

Thank you for reading xx

Friday 12 July 2013

A legacy for Chloe

This is the most important piece of work I've ever done in my life.  We need better treatments for people with rarer illnesses and better access to clinical trials.  We are looking at ways that all our friends and all of Chloe's friends can help with this piece of work.

Huge thanks to Paul Burstow MP who arranged this meeting.  A really decent man!! Gives me faith in politicians again.  And thanks yet again to the tireless work that the fantastic Teenage Cancer Trust continues to do in Chloe's name.

IMHO the life of a child or young person is worth more than anything else in the World.  We need to prioritise treatment for young people with serious illnesses.  Unbelievably this doesn't seem to happen at the moment.

I'll keep you posted.

Sunday 16 June 2013

Amazing people


Three AMAZING young men!

Three of Chloe's friends have just done some horrific military type challenge in her name.  Called "Tough Mudder" it sounded like some kind of torturous nightmare.  These beautiful young men raised over a £1,000 for the Teenage Cancer Trust (TCT).  More about the TCT in a moment.

My family and I were so deeply touched and proud that these busy young men took time out to do this challenge, to do it in our Angel's name and to then come and tell us all about it.  I really can't explain how touched I am. Rather annoying that I cried all weekend after they visited - but really I wouldn't have had it any other way.  Many reminders of the great fun Chloe would have been having, of the wonderful woman she would have become, of the family she may have had AND, I'm absolutely sure, the good she would have contributed to the World.

 Such loss.

Chloe would have absolutely loved the attention too.  Of course on the face of it she would have been her usual nonchalant self and later, when we were alone,  she would have admitted how much she loved these young men and how much they meant to her.  Under her beautiful, sometimes icy, exterior, she had a very very big warm heart and so much time and affection for her large group of female and male friends.  And I think - I guess - that this is why so many people loved our beautiful child.

There are so many good causes; but the Teenage Cancer Trust has to be at the top of my list.  The Bone Cancer Research Trust and the Little Princesses Trust are also personal favourites. Full of people who really care; people prepared to go that extra mile, to challenge the status quo and to work tirelessly to improve treatments/access for people - and especially young people - who have the terrible misfortune of developing one of these nasty nasty illnesses.

My kind of people.

We all continue to work hard in Chloe's name.  The media coverage has been heartening and we have good media contacts now.  Chloe's story is a powerful one - a young life cut so short by an illness with few treatment options and dismal survival outcomes.  V little innovation in new drugs, all kinds of blocks to developing better treatments, lack of investment and absurd and ill thought- out access criteria to clinical trials.

Lots is happening.  Over the next few weeks Chloe's story will be used in a number of high level meetings - one at the House of Commons - to call for national, European and international change.  Through extensive campaigning from  the Teenage Cancer Trust and local MP Sir Paul Beresford, I will be able to share our story with international oncology professors, regulators and others who have the power to change things for the better.  Our story is so sad; but we hope to use that sadness to ensure that others will not have to go through what our family had to endure.  Not in the 21st century.  It's just not right.

None of this would be possible without the kind of fund raising that these young men have done.  This kind of fundraising means that organisations like the TCT can work like they do.  It's crucial work.

And in my darkest moments, which remain pretty often, I yearn for my child.  And wish with all my heart that all this passion, love and energy could be poured into pulling her back into our World.  If only these young men weren't running in her name; if only they were running with her. If I could just snatch her back for an hour, that would be ok.  Just a quick gossip to tell her all that has happened, to show her her memorial stone, of her friends spending so much time with her, of all of the love, of how the colour in our lives has been permanently dimmed/destroyed by her loss, of the deep aching pain in our hearts..... if only.

Sadly my dreams have stopped coming true.  So all that's left is to ensure we do good things, wonderful things,  in her name.  That's all we can do.  And just maybe that's enough.  I know it's what she would have wanted and is how she would have most wanted to be remembered.

Please watch this space.  Chloe was a wonderful young woman; hopefully we can continue to do amazing, wonderful things in her name.

Wednesday 29 May 2013

Sometimes the baby elephant falls anyhow

Photo: How can I see this and not think of you instantly? Let me know when the pompom pool is ready and I will bring my swim fins.My Canadian friend Ali shared this photo. Ali's son has the same cancer that Chloe had; but thank God is doing really well and the prognosis is good.  Yet, like all mothers of children with life threatening illnesses, Ali knows just how precarious our parenting job really is.  The wrong set of circumstances and the baby elephant really can full.  Forget all the stories of the power of love saving everything; sometimes nothing works.  Sometimes it doesn't matter how much you love, scream, pray, plot, work hard, want something with every cell in your body - sometimes the baby elephant will fall anyhow.

Mother Nature - how cruel you can be!

The Mummy elephant will be left bereft and entirely powerless.  Her reason for living, for getting up every morning, all gone.  She'll be left dazed by the cruelty of it all, guilty that she didn't somehow do more, hideously empty and her big huge heart will be broken and permanently and critically damaged.

Whatever happens she will be changed forever.

But it's likely that she will get up and keep on going.  I guess elephants, like humans, are programmed to survive.   Even with the most crippling and intense pain, we are programmed to just keep limping forward.  And so we do.

And every so often there is a little glimpse of light.  And then, just for that moment, we are glad that we are still here.  Our Roman's toothy grin tops my list here; but there are other lovely moments that somehow pierce the pain. A week in the South of France - crap weather but the most wonderful friends to share some fun and good times.  I found it really strange that I could ever again have fun without Chloe;  I had expected it to be a nightmare. A nice surprise for once.

And others - cuddling Ralph (Chloe's golden retriever) by the fire.  He just seems to know when I need that cuddle; my beautiful daughter Hannah as we seem to be growing together again to care for each other as we understand the pain of this loss best of all; Chloe's friends who have become a huge source of comfort to me (and I hope I am to them too), the local church - still not really speaking to "God" - but pop in to light a candle most days and I love the peace of the building.  There are also many sources of additional love and support should one want/need to tap into.  The Compassionate Friends, I hear, is a wonderful organisation - run by parents who have lost children who have chosen to stay in the world and use their time to help others.   These people are heroes IMHO.

Reaching out, connecting, staying part of the human race - it's all any of us have I guess.  Oh and having a dog - that helps too.

In a reflective mood at the moment - so more ramblings tomorrow.

peace and hugs xxx

Wednesday 8 May 2013

Where do I start..

Grief is so individual - that's one thing I've definitely learnt.  Nobody can tell you how you are going to feel - I guess this is your personal journey with you and your loved one.
But there are some themes and I think we're all struggling a little bit more now.  As the numbness and shock recede; it exposes the raw pain underneath.  I didn't think it could hurt more; but it does.
I miss her; we all miss her.  She was such a bright soul, so funny, so full of life and energy.  For me it feels like the lights have dimmed to almost nothing; that the colour's faded from the world; that life is a little less worth living.

But then snap! Shame on me for saying that.  Life IS worth living.  And I think of all the people who are struggling with any one of a number of terrible illnesses - what they would give for a few pain free days, to be able to see the beauty on offer, to be able to touch and feel things and live a life without physical pain.  This may sound trite; but it doesn't make it any less true.

I passionately believe that whilst we're here we have a duty to try our best to make the most of things, to love our loved ones and to make the world a tiny bit better for somebody somewhere.  We're all in this together really.

Chloe has died.  It's a fact; a brutal, raw, horrid fact.  But it is a fact.  And I knew early that it would be a struggle to turn the sadness into something better.  Something more worthwhile.

But when I open my eyes I see so much energy flooding into good causes all in our Chloe's name - many of them initiated by Chloe's friends and school mates.  Top of my list is the sponsored walk and all the other activities all initiated by Chloe's friends at her school St Philomena's .  They've raised a whooping £6,600 for the Royal Marsden in Sutton in just a few weeks.  And this has all been done whilst they were taking their final A Level exams.  Mass at St Phils yesterday was a very emotional time for me and Simon. Watching all these beautiful girls standing up and telling us what they did to raise the money.  Uplifting, inspirational and amazing.

We are so very proud of you girls!

And it's things like this that makes our light a little less dim, our word a little less colourless and life a little more worth living.  And there are many other things too: Roman's running now - not content with walking anymore - Hannah's the love of my life, and I now have all my adopted daughters (Chloe's bestest friends) to worry about).  There's Sarah's nursing; Olivia's play (she's so talented!), Koiswa's university choices, Big Chloe's childcare, Sophia's business studies .......  So much life and so much to do.  Thank God!

Girls I love being in your lives as you hold Chloe's soul for me.  I see her in all of your eyes and it's a beautiful, beautiful thing for me.  Thank you girls.

Look to the lovely - my message to myself today.


Sunday 28 April 2013

the media

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 21 April 2013

Sunday Times

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.

Saturday 20 April 2013

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   Carol is an inspiration to me.  .  .

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

Friday 12 April 2013

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.