One month on ... not so brave now

My friend Helen posted this on face book today and it so resonated.  Helen's son, Dom, also had a sarcoma.  Another beautiful young man just starting out in life.  He is fine.  They've had a much better ending than us (to the say the very least) but once you've been touched by cancer in a young person I don't believe you can ever be the same again.  I spent a long time in the teenage cancer ward with Helen.  She was funny, bossy (in a really good way) and her strength often made me feel really safe. I felt we kind of clung together sometimes - both stuck in a world where neither of us wanted to be - but we just had to get on.  She came to Chloe's Celebration of Life with Dom and her husband.  I thought that was really brave.  There must be a temptation to just run as far away from cancer as possible.  But they haven't done this.  So admire Helen and  this quote really reminds me of her ...... and of me too.

Chloe died just over a month ago now.  In some ways it feels like way longer than that; and in other ways I feel she is still here.  Anyone who faces cancer, and decides to fight, has to be brave.  It's vile, horrific and terrifying.  Just the facts - to me.  But looking back I don't feel I felt brave; most of the time I was utterly and absolutely terrified.  Anxiety would kick off first thing in the morning, until I went in to see how she was, and, depending on the result of that, would either ease off a little or rise into an absolute all consuming terror.  Life really was sometimes a nightmare - although I must remind myself not all of the time.  Nobody would know, of course.  when your child is ill you can't do emotions.  They look to you for a lead on how things are.  I became the most brilliant actress and I don't regret this.  I think that this helped Chloe to have a good life whilst she was ill.

So when I saw this post it reminded me that Helen - such a larger than life, strong, assertive, woman, probably also has her terrors underneath and that sometimes all we need is a little kindness and little recognition that this really really hurts.  And that hurting is ok.

So today this is how I'm feeling.  I am strong, I am resilient.  I know that.  For my child I was driven by a love that was all encompassing - there was no option but to be strong.  And I keep going for my other beautiful daughter and my little ray of sunshine, my nine month old grandchild, but underneath I feel like ten layers of skin have been ripped off and I'm walking through fire.  It really really hurts this loss thing.

But I need hope today as that is my promise to myself - and to all other bereaved parents who I hope at some point may receive a tiny bit of comfort from my ramblings.  My journey is to find hope.  So off for a walk with Ralphie dog and my lovely friend Rosie and then a pamper afternoon with some of Chloe's friends Mums.

Lesson for today - I'm not going to paint that smile on quite so brightly.  I'm too tired to do that.  I want to just quietly enjoy the company of people at love; but maybe I won't be quite so brave today.

I love you and miss you Chloe.  With all my heart.

When bad things happen to good people

I find huge solace in reading.  Apparently people who are grieving often read everything and anything they can get their hands on.  I guess we are trying desperately to try and find some meaning in the pain.   And I am slowly beginning to realise, I think, that there is no meaning in this pain.

Life really hurts sometimes and quite often we just don't have any control over it.

"When Bad things Happen to Good People" - Harold Kushner's international best seller "for everyone who has been hurt by life" really appealed to me.

When Chloe was first diagnosed I kept asking why?, why us?  Our hospital consultant told us quite bluntly, I thought at the time, not to waste any time dwelling on this one.  Looking back I kind of understand what he was saying - but at the time it just seemed the biggest question in the world and we were desperate for answers.  One of the most heart breaking things Chloe ever said early on in her illness was "Mum why did this happen to me?  I haven't done anything wrong?"

Through the journey with teenage cancer you learn pretty quickly that really bad things do happen to really good people.  And to really young people.  I'm haunted by an image of a little boy called Henry.  He had some rare, and probably incurable, cancer.  He was two.  Every morning he would be sedated to go into radiotherapy as little ones don't keep still - so have to be sedated.  His parents were sweet, caring and patient - and totally distraught.  He was their first child and they knew that he probably wouldn't get better.  Whatever could he have done to deserve this at the age of two?  I often think of little Henry and I wonder what happened.  Maybe a miracle?

In Kushner's book he says that when people cry out in anguish God sends people to help us.  Doctors and nurses to help ease the pain and suffering and friends and community to hold us up when we can't stand any more.

I'm not sure about God at the moment - we're still not on proper speaking terms.  But I believe in people, in community.  My friends, the doctors and nurses at University College London Hospital, The Royal Marsden in Sutton and the Croydon Children's Hospital at Home Team are the closest to angels I've ever seen.  I am totally humbled by their dedication, compassion and their ability to reach out and help in the most difficult circumstances.

 Chloe's death was the most heart breaking thing I have ever experienced; but it wasn't traumatic.  And the reason it wasn't is because of the people around us.  Having seen the most precious thing in my life die I have absolutely no fear of death.

And my friends; and Chloe's friends.  All the people who have sat with me , held my hand without speaking, without trying to explain away my suffering or diminish it by telling me other people have it worse. The reassurance that I'm not alone and that my family and I are people worth caring about - this means so very much.

Two of Chloe's dearest friends sat in our little memorial garden today.  They cried.  I cannot think of a more touching scene than these beautiful young people sitting in Chloe's garden just thinking about her.  So sad and so uplifting at the same time.

It is these little images of the beauty of life and the human spirit that is starting to help me heal. Very very early days but I feel a softness creeping in.

kindness

Ralphie - Chloe's beloved retriever 

      

Before Chloe was diagnosed with the dreaded Ewing's Sarcoma, I never really thought about kindness.  I don't think I was unkind, but I probably thought other qualities like drive, courage, determination were all far more useful.

Not any more.  To me kindness is the single emotion that has meant more to me than any other during Chloe's illness.   I remember and cherish every single kind word/gesture from all of our wonderful friends who supported us.  It really was the kindness that made the difference. 

No wonder the NHS is trying to hard to recapture the spirit of kindness.  We had a beautiful young girl who was ill.  You find kindness in so many places in this situation.  Maybe not so much if your loved one is old, homeless, mentally ill.  Not so much kindness around then.  Another injustice in life I guess.

Chloe's dog Ralph is a kind dog.  When we were sad he'd put his head on our laps, when we were happy he'd skip off down the path with us.  He watched our mood all the time and corresponded accordingly.  Ralph is great with empathy and now I spend a lot of time just cuddled up next to his warm, soft, loving body.  Ralph was so important to Chloe and remains so to us.  To others he's just a dog; to us he's in the heart of our family and epitomises how I wish to live my life from now on.

I had a tiny sense of happiness break through my gloom today as I was given the chance to share Ralph's kindness with somebody else who is having a very tough time.  I met Hayley through my yoga class.  She's young, beautiful and glamours and works as a nurse at Great Ormond St Hospital.  She's also been caring for her Mum, who has had MS, for many years.  You would never ever guess this - she reminds me of my Chloe - she lights up a room with her beauty, her warmth and her compassion.  MS, like cancer, is a bitch of a disease.  Buy Hayley adores caring for her Mum, she loves her Mum so much that the care - whilst exhausting - is an honour not a chore.  I get that.  And Hayley and I had an instant connection.

So Hayley is letting me bring Ralph over to see her Mum next week and hopefully we can take her out walking.  The idea of being kind to somebody else pierces a hole in my sadness.  

So this is something I want to capture as I want this blog to be primarily about how to find hope and survive when you've seen just what hell is like.  I really hope that Hayley and her Mum enjoy Ralph; but I suspect that I will get just as much out of the visit.  I'm already looking forward to it. 

""kind words can be short and easy to speak, but their echoes are truly endless."

Mother Teresa  

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Chloe's celebration of life

We had a beautiful celebration of life for our beautiful daughter Chloe yesterday.  Truly amazing really.
A few things really helped in making this a celebration.  We had her cremated separately and then had the ashes blessed and buried.  We also left almost four weeks before the day she died and the celebration.  Pros and cons to this but overall think it meant we could focus on Chloe's life rather than just her death.  We were all just that tiny bit less raw.

Chloe's young friends were amazing: Sarah, Olivia, Rosie, Sophia and big Clo.  My earth daughter Hannah too - just wonderful.  Absolutely 100s of friends and family gathered showing how many people Chloe had touched by her young life.  I am so very proud to be her Mother and felt so supported by all the amazing people there.

Now back to the quiet and the real business of grief, loss and mourning.  I expect a huge dip in emotions after the activity of the celebrations.  Now the real brutal reality of no Chloe to wake up in the morning, no Chloe to take tablets to, no Chloe to snuggle up in bed with.  Just no Chloe.

So on with the journey of how to live without my daughter, my best friend, my inspiration.

I would love anybody else who has faced bereavement in anyway to post here - a discussion on grief would be good. Parents like me feel hugely isolated in our grief - its seems way beyond the normal boundaries of life.  Grief at this level is a whole new world to me and I have seen other parents absolutely crippled by this level of grief.  How does one start to live with the sadness, how to you find hope in the pit of despair?  Any comments gratefully received.

Also please  http://www.thisiscroydontoday.co.uk/health and really appreciate you commenting on the story and you sharing your memories of Chloe.  As you will see Chloe's treatment options were limited and we faced many obstacles to getting her the right treatment at the right time.  Most especially she was denied a promising new treatment as she was 4 months short of her 18th birthday.  A campaign is being launched to try and ensure that other young people don't have to face the same obstacles that our family did with our beloved Chloe.  Please support us with this. xxxx

What does sad feel like

 


Today I'm really sad.  It feels like it's everywhere - all around me and deep within my body.  Sad really really hurts.  It feels like a physical pain - I never expected that.

It kind of starts in my heart and then travels down my legs.  Every now and then I get spasms of pain that fill my whole being.  My head thumps and my body feels like it's drained of all its blood of all it's life force.  Nobody ever told me that grief can feel this physical.

How funny that anybody could think that people can just move on from this.  Pull themselves together, accept the loss, move on. Ha! You try it.  This is a pain tsunami that feels like it may never ever get better.  I'm drowning, I'm suffocating.  I don't feel alive, but  my heart is still beating. How does that work?

 I promised I would track my journey of loss truthfully.  It's not a pretty sight at the moment and no hope just yet.

I'm really sad because I miss my daughter so much.  I'm really sad because I loved her so much. So much. And then she died.  I loved her and cared about her with every fibre of my body for 18 years; but she still died.  How unfair is that!

So today I'm testing out ways to make the sadness not hurt so much.

  I called my other daughter and that made me less sad.  I walked my dog and that helped too.  Maybe two tiny little shoots of hope? Who knows.

 I looked at some photos of much happier times - but that made me more sad.

So  I decided to be sad and wrapped up by the fire with a blanket and thought about my Chloe.  Maybe I'm just going to have to be sad for a long long time.  Maybe I'll always be sad.

 Maybe the price of loving Chloe so much is a lifetime of sad.  And as they say there are worse things than sad.

Chloe with her wig from the Little Princesses' charity - a wonderful organisation 

Two and a half weeks since my precious daughter died.  And this is what is happening - the shock is fading and the pain is coming though.  My whole body aches; like my heart and soul have been ripped from my body and set on fire.  It is truly horrible.  But I promised myself I wouldn't get lost in the darkness; I promised myself I would try and find some light.  I promised myself that I'd try and use all this pain to help somebody else - to be an inspiration as that's what Chloe was to me and to so many people.  To show somebody else that you can get through even the worst of all losses and that somehow life will be worth living again.  That's my mission and I promise I will keep trying -

Forgive me if I fall off my journey sometimes - she was pretty special.  I feel I've lost half my hopes and dreams and my very best friend. 

When Chloe died I read all the official literature and it just made me more depressed.  It warned of all the difficult times ahead, how nobody ever gets over this pain, how life changes forever.  I'm screaming so loudly: I need some hope!!! Please give me some hope!  People can't live without hope. 

I couldn't live without hope when she had cancer; and I can't live without hope now she has died. 

And then I found it.  A quote from Mathew Engle, a journalist who lost his beloved son Laurie to cancer, and wrote a beautiful article about his loss entitled  when the sky fell in http://www.guardian.co.uk/theguardian/2009/dec/05/laurie-engel-fund-teenage-cancer-trust.  The line that really struck me was that there are worse emotions than sadness and that sometimes sadness can inspire and change.  That's what I want to use my sadness for.  It's no good otherwise - I have to work to transform this sadness, this bitter grief , into something useful.  

Stay with me I'm going find something somehow.

The day my life caved in

My beautiful daughter Chloe 25th January 1995 - 28th February  2013

My precious daughter died just one week ago; and the pain is indescribable.  It feels like a physical ache; like a tsunami of the soul.  It’s horrible.  I’m not sure how I’m ever going to survive this; but I’m going to try and I’m going to log my progress here.  I have no answers, no magic solutions – just a need to step gently hour by hour.

So what have I learnt in my one week as a bereaved mother.  Firstly that somehow a numbness comes in and cloaks you from the real intensity of grief.  Every now and then that cloak is pierced and it sends you tumbling into a spiral of the most searing pain possible.  And then you come out of it.  I don’t know how you do, but you do.   And secondly, and perhaps most importantly, think very carefully before you visit a loved one – especially a young loved one – in a chapel of rest.  It wasn’t what I thought it would be.  My beautiful beautiful daughter was unrecognisable – and there was definitely no soul there.  Comforting, I guess, as emphasised the fact that the soul really does go somewhere else.  I’m quite torn though.  I feel I’m letting her down if I don’t visit again – is she lonely, is she cold, does she feel abandoned? All nonsense questions as she isn’t there – but the mind plays very strange tricks. Anyway if anyone asked me advice on this I’d say do what you need to do; but you don’t need to visit.  It doesn’t always help.