Wednesday 19 March 2014

A continued quest for meaning in despair

“The pessimist resembles a man who observes with fear and sadness that his wall calendar, from which he daily tears a sheet, grows thinner with each passing day. On the other hand, the person who attacks the problems of life actively is like a man who removes each successive leaf from his calendar and files it neatly and carefully away with its predecessors, after first having jotted down a few diary notes on the back. He can reflect with pride and joy on all the richness set down in these notes, on all the life he has already lived to the fullest. What will it matter to him if he notices that he is growing old? Has he any reason to envy the young people whom he sees, or wax nostalgic over his own lost youth? What reasons has he to envy a young person? For the possibilities that a young person has, the future which is in store for him?

No, thank you,' he will think. 'Instead of possibilities, I have realities in my past, not only the reality of work done and of love loved, but of sufferings bravely suffered. These sufferings are even the things of which I am most proud, although these are things which cannot inspire envy.' "

From "Logotherapy in a Nutshell", an essay” 
― Viktor E. FranklMan's Search for Meaning

I am now onto my third reading of Viktor Frankl's Man's Search for Meaning.  A jolly read it is not! But it is another book that allows me to retain some hope that there is meaning in life and maybe it's even helped retain my sanity a little.

 Frankl is a Holocaust survivor and went on to return to work as a psychiatrist. He lost everything but went on to live a rich and compassionate life.  Insightful doesn't nearly cover it. A totally amazing human being. A wonderful book.

Yesterday was a bad day you see.  Generally I fight hard to stay upright; to stay engaged with life to fight on for those I love and who love me - and maybe even a little for me too.  But yesterday the gloom won and I sympathized with the view that "nobody can really live again after loosing something as deeply precious as a child" - and what a child/young woman she was.  That dark view, that any kind of hope, contentment, or just even a tiny glimpse of happiness, just  isn't really possible after all of that.  I understand that - sometimes.

But I want to fight against it too.  It just can't be right.

But the gloom seems to rise up with it's roaring inferno of pain; flinging me back into the darkest despair of those early days.  How did this happen? where's she gone? Why her?  Where is the meaning in this?  I will never see her face again, feel her soft young skin, hold those beautiful slender hands.  Oh her hands. How I miss those hands. The hands I held night after night as I slept beside her in those last weeks.  Glancing back timidly I now realize the importance of those weeks; the magic; the wonder of loving somebody so entirely/ so completely that it absorbed every fiber in my body.

I have never done anything more worthwhile in my life; and never will.

I was/am so proud of my daughter.  The way she coped; the way she still wanted to protect me, her family and friends from the real pain that she must have been feeling.  She seemed to accept that we were ultimately totally helpless and couldn't help anymore.  All we could do was love her and that was the only bit that was so incredibly easy to do.

And now I'm aware of the necessity/wonder of love and kindness; but also it's limitations.  Nobody can take my pain away. I accept that  I can talk to all the therapists in the world; attend all the self help groups, talk to other bereaved parents, read and read, cry and cry....... anything, everything.  But the deep gnawing pain is here to stay; it isn't going anywhere.  And I recall the words: "The pain of the loss is equal to the depth of the pain". And I get it.

There's a huge benefit in seizing the personal responsibility and accepting that nobody can really help with the loss; but conversely that means you can rob them of the power to hurt too.  And this is for you my fellow bereaved - don't let words hurt you; you've suffered enough.   People often just don't know what to say; so all the wrong words come out. We have paper thin skin for now and life isn't really meant for skin this thin.  I believe passionately in the goodness of human beings - I've seen far too many examples to believe otherwise.  Words may be ill chosen; but look for the sentiment behind the words.  Look at the tears in their eyes and know that people do care - it's just none of us really have any control when it comes down to it.

And if there are no tears - well that this their problem.  It most certainly isn't yours.

Now is a hard time for me but I guess life will soften again as it has before.  I look back to Frankl “When we are no longer able to change a situation, we are challenged to change ourselves.”  So I guess that this is now the challenge.  To live with the pain; but to ensure that there is meaning too.  That's what Chloe did and that's what I must too.

I guess a drive that helps me deal with the darker days is that need to turn the pain/the sadness into something more positive/some kind of inspiration - however small.   Chloe was far too precious for anything less. 

Saturday 8 March 2014

One year on.

 for anybody who is bereaved 

Our first anniversary

As my little wise Chloe would say Elizabeth Kubler-Ross "knows s**t".  If there is one person who I would recommend as the "go-to" person for coping with bereavement it would be her  Her writing is beautiful and uplifting.  It provides a familiar blanket to smother the pain and provides signposts to a kinder path. Sometimes, for me, grief feels so harsh and almost punishing.  That softness is so appreciated.  When my pain overwhelms and engulfs me, as it does, I tend to turn to her words for comfort.

So there I was arrogantly thinking that "I don't do anniversaries" and "I don't generally even know what day it is.  Everyday is difficult.  It's just another day.".  Bulls**t!  If only I had heeded Elizabeth's warning that even if we don't acknowledge an anniversary consciously; the sub-conscious will make damn sure we don't get away with it.  She refers to research from very young children in children's homes; children too young to really understand time.  On the day that marks the year that they were put into care; the children nearly always really struggle and their behaviour deteriorates sharply.

Their soul remembers the day; even if they don't.  God, if life wasn't difficult enough for these children.

Back to cancer - I remind myself that children in childrens' homes get cancer too and so do those from third world counties.  Just because you've already won the negative lottery of life and had an appalling start in life; doesn't mean that you won't get cancer too.  Great life isn't it.

  I heard many stories of young people coming in for cancer treatment with no parental of family support.  The mums and dads on the ward would do their best; but what ever happened when they went home?  This idea really haunts me.  This is also definitely worth a look  Just a flick around this site makes me realise how much worse our journey could have been.  Accessing the proper medication for palliative care is a real challenge in some countries.  Jesus how horrendous would this be!

So one year on and my thoughts are coming together.  Our aim, to turn our pain into something inspirational, something positive, echoes in the background.  But there are so many questions.  Chloe was blessed in that she was so loved and so protected.  How can we use this passion, this energy to start our own little movement in her name. How do we help others and where should we focus?  So many people, so many young people, want to help.  All that passion; all that energy.  It needs to build and unite around something with clear objectives.

My background in communications tells me loud and clear "manage expectations!"  Start small and have achievable aims.  Yes we want to raise thousands for research, yes we want to help children in less developed countries.  Yes, yes, yes!!!  I flinch at my arrogance.  We just aren't big enough for that.  And yet "it takes just one person to change the world" - and even if we change the world in a tiny tiny way - make life a little better for just one child, one young person - maybe that's enough?

So Chloe's second Mum, Rosemary Ridgeway - my rock throughout the whole of Chloe's illness, death and way beyond - me and some of Chloe's dearest friends have set up our Foundation  Create for Chloe.  Our thoughts are taking shape and here are some of our musings/observations - Cancer Research has an appalling record for investing in cancers that affect young people and children.  Reminds me I need to cancel my monthly payments.  Teenage Cancer Trust is brilliant as are others; but  IMHO, larger organisations sometimes loose the passion and purpose that they are set up for and start serving the staff more than listening to the people they are trying to help. This isn't a criticism; just a fact of life.  So we want to start lots of conversations - with our local hospital The Royal Marsden, other charities big and small - where can we pump prime other projects that are failing because the funds are drying up - speak to the children, the teenagers.  Cancer is expensive; very expensive.  I've seen families loose their child and then their house because they had to give up work to care for their child.  I've seen children struggle to afford a prom dress as Mummy can't work any more.  God I've seen so much additional distress because a family was facing financial hardship on top of everything else.  We want to start by listening to people and seeing where our passion, our energy and our funds can help a tiny bit.  And I'd love to hear from anybody who reads my blog - NO project is too small - pls email me on you have any thoughts.

And in the meantime we will carry on "banging the policy drum".  Treatments that are 40 plus years old; access to new treatments denied to children and young people as they are "too risky" or "not commercially viable", 900 new drugs coming down the pipeline for cancer; NONE of these are for the cancers that affect children and young people....... So much to do.

I read about another small cancer charity the other day and it's catch line was "A small charity; with a big heart".  This sounds just perfect to me.

Keep you posted

Tuesday 4 March 2014

What if she was mine - House of Lords Feb 24th 2014

What if she was mine?

Photo: #createforchloë 󾬓󾬕󾬑
Team Chloe at the House of Lords 

This is my speech from the House of Lords on Feb 24th 2014.  I spoke in support of the Medical Innovation Bill.  The Bill has been launched by Lord Maurice Saatchi following the death of his beloved wife Josephine Hart.  Lord Saatchi spoke at the event as did Chloe's amazing friend Michael  (Mike)Thomas.  I will ask Mike to post his speech too.  It was an amazing day and there was a feeling that support is growing fast for a whole new approach to the treatment of rarer illnesses; such as the type of cancer that Chloe had.  Very very touching that team Chloe was there for support: Sarah, Chloe, Mike, Rosie, Liam, Sophia and Jael.  That felt so special and so important.

You can listen to the speech here.  Sorry about the quality. Better quality version coming soon.

Today - out there somewhere - a teenage girl is about to hear the worst of news. Whilst her friends fret about which hot boy fancies them; or how popular they are on the latest social media site; this poor girl will be told that she has cancer.  And her world, and that of her family, will fall apart.  
Imagine the unimaginable…    ask yourself what if she was mine?

Seven people between the ages of 13 and 24 are diagnosed with cancer every day in the UK.  Leukaemia is the most common cancer in this age group followed by Central Nervous System tumours.  The cancers that this group tends to get are very different from the type of cancers children or adults get; they are also nearly always the most aggressive.

So, back to our teenage girl.  Today will be the worst day of her life - what lies ahead for her?  If she’s “lucky”, and I use that term ironically of course, she will have Leukaemia.  The treatment will be horrendous; but she’ll have a good chance of survival.  The treatment of leukaemia has been one of the few success stories in the cancer world.  In the 1970’s Leukaemia was a certain death sentence; but now almost 90 per cent of children and young people survive.  

But what if she has one of the other cancers; such as bone cancer or neuroblastoma?  The horrors that lie ahead for her here are beyond your imagination.  Let’s go for bone cancer.  There are two main types that affect teenagers and children: osteosarcoma and Ewing’s Sarcoma.

And the problem with bone cancers is it’s in the bones and - if you’ve ever broken a bone yourself or had any kind of bone issues - you will understand why bone pain is known as the worst of all pains to have.  Relentless and agonising and it’s only the really heavy duty painkillers that have any effect.  

Despite this, most adolescents with bone cancer are dismissed by their GPs as having a variety of other illnesses from growing pains to juvenile arthritis; mis-diagnosis and delayed diagnosis are very very common with teenage cancers.  I guess teenagers just aren’t supposed to get cancer - and GPs are as guilty of that bias as the rest of us.  

Once diagnosed they are given a cocktail of various drugs. Methotrexate, ifosfamide and etoposide- common chemotherapies in bone cancer - are known as the worst available. The drug cocktails they use for bone cancers, and the accompanying  short and long term side effects, wouldn’t be out of place in a script for Silence of the Lambs.  

Complete hair loss at 15 must be so hard.  But believe me that’s the easy part.  Life threatening infections, weeks in isolation in a hospital room with no window, premature and irreversible menopause, heart failure, kidney failure, nerve damage, shingles - that’s a bad one - and to top that all off, the treatment itself may create a secondary cancer.  A doctor once said to me that early 21st century chemotherapy treatments will be regarded by future doctors with the contempt that today’s doctor’s reserve for leeches.  They kill the cancer alright; well in the short-term at least; but they kill a lot more as well.  

And as if they didn’t do enough damage to the body; they kill the spirit too.  

Once again I ask you to imagine what if she was mine?

A bone cancer diagnosis when you’re only 15 isn’t the best of news.  If you’re lucky you’ll avoid amputation of one of your limbs.  But even if you do, the brutal reality is that your chances of survival are pitifully low.  You may naively expect your doctors to roll up their sleeves and assure you that they will throw everything they can at this.  You’ll expect no  stone to be left unturned in trying to find you a cure.  You’ll think any promising new treatments will be made available - if not here, then maybe in the US…...

But this won’t happen!  Your doctors will probably avoid your eye contact, and sometimes even avoid you altogether!  Your doctors will talk about processes and protocols.  They won’t tell about a promising new treatment that was pulled years ago by a pharmaceutical company because kids/young people’s cancers just aren’t commercially viable. The story of a drug, an IGF1 inhibitor called Figitumumab is an especially good example of this disgraceful behaviour.   Look deeper and you’ll find that the treatments they’re proposing for you are over 40 years old; and the protocols are over 15 years old. Few new treatments are available and - even if there are any - you are going to have to be extraordinarily lucky, or have enough energy left and the right high level contacts, to get on to them.  God help you if you are running short on either.

The few clinical trials that bother to include the rarer type of cancers that young people and children get will, almost without exception, have bizarre entry criteria that make no clinical sense whatsoever.  Such as a trial for a cancer that predominantly affects people aged 15 with a lower entry criteria age of 18.  You couldn’t make it up.  

You may well look into your doctors eyes and shout, scream, complain, plead and beg.  He may well be sympathetic; he may well be very kind and really care about your child. But he may well do absolutely nothing and rest wearily back on a tried and tested extremely conservative system that has some pretty strong evidence to support the fact that it is very unlikely to work.

That child was/is mine.  Her name was/is Chloë and she died a year ago today this Friday when she was 18 years and one month old.  She was popular, self assured, charming and very very beautiful both inside and out.  She was blessed in that she was loved so much and her death has left the deepest hole in so many people’s lives.  A few of those people are here today.

Sometimes I dare to imagine the imaginable.  What if six months before Chloë died, in August 2012, when all hope was almost gone, she had been entered into a Special Category that doesn’t exist; yet desperately needs to exist.  A Special Category where all bets were off.  All the rules no longer apply and all the prudent methodologies of the medical profession and indeed the Hippocratic Oath itself need to be swept off the table and left to smash onto the floor.

Once Chloë had only got six months or so left to live, how could any radical potential new treatment have been defined as too risky or too dangerous?  These words - risky, dangerous - are utterly meaningless in this context.    

What if the doctors tried something different; something new, something promising?  Chloë may well have died anyway.  I accept that.  But surely what she would have left behind would have been more clinically valuable to other children to other teenagers - are most precious commodity.  And for us maybe we could have kept a little faith a little longer.

Of course we didn’t want her to suffer more.  Although it’s important to remember that dying of cancer isn’t a walk in the park.  And there is always a risk of making things worse. I know that.  And of course things have to be done with caution and with great care.  But there are drugs coming down the pipeline that are showing huge promise - Professor Andy Pearson at the Royal Marsden refers to now as the golden age of drug development - we desperately wanted hope; Chloë desperately wanted to live.  She didn’t want the medical establishment to give up on her, and neither did we.

She didn’t get those new drugs.  So, the only medical advance resulting from Chloe’s death was re-proving for the zillionthth time that an old protocol with old drugs, doesn’t work. No useful contribution to medical science there, then!

There’s a huge problem treating rarer cancers and rarer illnesses - the very fact they are rare means that there isn’t enough data/enough people to test new treatments.

Even if Chloë had died anyway whilst on some new esoteric untested and ‘risky’ treatment, her death would then have helped advance the science in that new arena.  Her death might then have given a greater survival chance to the next poor girl who gets diagnosed with cancer today.

We desperately need this new Special Category so that doctors can try new radical things when they know the existing drugs don’t work.  We need to support this Medical Innovation Bill.  It is the right thing to do.

I cannot have my dearest wish to have my daughter back with us.  So I’ll go for my second wish to use my family’s story to ensure that the next Chloe who comes along, and so sadly she will, will have a better chance of life.

Thank very much for your time.