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

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.

Andi's Army - people power yipee!!!

https://www.facebook.com/OfficialAndisArmy?hc_location=stream


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 http://www.accesstomedicine.co.uk/the-campaign/les-halpin 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.

"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.  http://www.itv.com/news/london/2013-09-11/family-backs-medical-innovation-bill/

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

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.