Sometimes the baby elephant falls anyhow

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

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.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

the media

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

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

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

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

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

- Chloe was treated on an outdated protocol set up in 1999.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

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

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

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

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

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

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

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

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

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

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

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

 It really is as bad as it gets.

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

I'll keep you posted.

Sunday Times

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

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

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

xxx

Grief is the deepest lesson

1997 was a perfect year 

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

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

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

I'd swop places with you in a heartbeat. 

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

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

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

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

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

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

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

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

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

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

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

tea with the vicar

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

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

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

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

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

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

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

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

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

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

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

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

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

THE BALLAD OF PEAKS HILL GAOL

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

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

Six weeks our guardsman walked the yard,

In a suit of shabby grey:

His cricket cap was on his head,

And his step seemed light and gay,

But I never saw a man who looked

So wistfully at the day.

Six weeks dear Chloë’s now been gone

Different meanings now for ‘gay’

Her leather jacket’s Hannah’s now

Her iPhone’s still in play

But the texts it gets are wistful

To a Chloë now gone away

Bedroom: untouched, unloved perhaps?

Mixed feelings – re-paint or leave?

That room was Chloë’s Reading Gaol

Neither Deb nor I believe

We’d want Chloë back inside that trap

So would re-paint help us grieve?

The Chloë that we’d beg return

No oxygen masks would need

She’d not be trapped inside that room

Nor deign us ‘rents’ to heed

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

How we’d wish her now ‘God Speed!’

Her ‘cricket cap’ of short cropped hair

Cancer wigs be cast aside

Short-skirted, pre-loaded, laughing

Stalwart friends close at her side

What precious, oh so precious times!

Snatched but months before she died

In that six short weeks, baby Roman,

Knowing naught of Chloë’s depart

Eclipses grief with his baby antics

And his freshly learnt ‘walk on part’

If only Chloë’d seen Roman walking

That’d have gladdened every heart

Six weeks, my Chloë, you’ve been gone

What wouldn’t I gladly pay?

To have you back, in full attack

‘You Arschloch!” hear you say

So, yes, I remain ‘a man who looks’

Very ‘wistfully at the day’

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