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