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 

The tears are coming

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

Edith Piaf

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

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.

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

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.

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

A legacy for Chloe

http://lydall.standard.co.uk/2013/07/mother-of-18-year-old-cancer-victim-says-drug-trials-must-admit-more-teenagers.html


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.