Pioneers! The First Ever UK Cancer Survivorship Conference

Cancer Survivorship: the long term effects of treatment

On 28th November 2006 Wendy gave a speech at a pioneering conference for oncologists and cancer nurse specialists at the Royal Society of Medicine in London, with  her partner in ’ survivorship pioneering’ Natalie Doyle, from The Royal Marsden Hospital. The conference-‘Cancer Survivorship: the long term effects of treatment’ was the first of its kind drawing medical professionals from around the world together to consider the needs of cancer survivors.

Read the transcript of Wendy’s talk….

“Good afternoon ladies and gentlemen. I have to say that I find it somewhat ironic that the twice over cancer survivor has been given the graveyard slot! But never mind! It is my aim this afternoon to offer you some understanding of cancer survivorship and its potential from a patient perspective.

My thesis is that an experience of cancer changes the lives of survivors to such an extent that we do, in effect, re-think living. In doing so, we often end up almost accidentally discovering the positive legacy of the disease: a legacy that by its nature could have more than just personal value.

Long term cancer survivorship-five years plus for my purposes- asks major philosophical questions: questions that challenge the commonly held view of cancer survivors as recovering ‘victims’. Those questions request a re-think of the needs of cancer survivors. But, as I intend to suggest, the philosophical questions survivorship poses have a relevance which reaches far beyond the cancer community.

Natalie Doyle ( 2005) has detailed five aspects of the ‘concept of survivorship’:

process,

uncertainty,

life-changing experience,

duality of positive and negative aspects

and individual experience

I want to use that framework loosely to share something of the survivorship experience; outline some of the life-changes survivorship brings and then raise something of a challenge.

Firstly, process Cancer may be a personal experience but it’s never a private one.
It will always involve others- professionals, carers, friends-and even the guy on the bus who you got into conversation with about why you could find your way into this or that hospital with your eyes shut. The cancer survivorship ‘process’ from diagnosis day- ‘D Day’- to ‘You’re OK’ day is lived out- ask Kylie Minogue - in front of a watching world- - and largely a frightened watching world. How we live out that ‘process’ and what we conclude from it as survivors has an impact on that world-and speaks into its fear.

Many of us-as survivors- can recall the very different way we looked at the world in the early days following diagnosis. Personally, it was as if my optician had dropped a lens in front of my view of the world which made everything look different. That lens connected me and all my senses with what really mattered. Colours seemed sharper, scenery more stunning and my senses and emotions were fine-tuned. Life, and those things and people I loved as part of it, seemed to have special value. The yellow gorse on the moor near our Devon home looked dazzlingly bright; familiar much loved music would move me to tears, and I noticed the lines etched into the faces of old ladies in the street-and they looked beautiful.  I don’t believe that my experience was just emotional fragility. Rather it was the first glimpse of a sweeping panoramic view of life from a new perspective, like the view from the top of a hill that takes our breath away. Sadly, as my eyes became accustomed to that lens, the colours and rich meaning faded a little.  But not one cancer survivor with whom I have shared that common experience has failed to say that they would love to find a way to keep that ‘lens’.

Once the initial shock has dissipated into bewilderment, flowed into acceptance and onward towards the end of treatment- we begin to meet and assess our values and priorities for life. They have a tendency to present themselves to us in the waiting room before a final check up when we’d rather be flipping through a five year old copy of Hello magazine. They demand that we line all that we once held dear up to the cancer spotlight and re-examine those priorities in its eerie glow. Those priorities will be different for everyone. But they will-usually revolve around the most human of experiences –relationships- friends/ family-people-genuineness-honesty-love. There are cancer survivors who decide to go live with orang-utans in deepest darkest somewhere- and I am told that many of us choose the ‘I’m okay-at least for now’ stage to divorce, move house, change our hair colour or re-align our professional lives. But hidden somewhere beneath all those alternatives is the recognition of our very humanity, vulnerability, mortality.

Then we are cast into the no-man’s land of survivorship. That’s when uncertainty begins in earnest. Up til this point, treatment, check ups and the comradeship, experience and assurance of nurses and doctors, fellow patients and the lady with the lunch trolley have told us we are going to be okay.  Uncertainty, however, tells us it’s not so sure and sits down to wait with us.  Because- as my fellow journalist and breast cancer babe Kate Carr wrote-‘That’s what surviving cancer is about-waiting, wondering’. In my acknowledgement of the fact I wrote a book following my treatment for lymphoma with the title ‘The Art of waiting’ .I had become-and would continue to be- something of an expert at it.

Once the ‘ok  for now’ - or the ‘all clear’ is reached- ‘all clear’  being a term shunned by most doctors of my acquaintance yet loved by film and TV scriptwriters and those who haven’t a clue how cancer behaves-we face a whole new set of expectations and uncertainties. I expected to feel jubilant-instead I just felt anti climatic. People said ‘Are you celebrating?’ and I thought ‘Do they think that I should throw a party because I’m alive- do they throw one because they are? Shortly after I finished my treatment for the first cancer I had-lymphoma- I helped Atlantic rower Debra Veale write the story of her harrowing solo journey across the Atlantic after her husband dropped out of the Ward Evans Atlantic Challlenge race. We noticed there were a number of similarities between our survivorship experiences: hers at sea and mine with ‘C’ sickness, loneliness, pain, bewilderment, fear, isolation, contemplation of death and agonising waits. The difference was-when she reached her destination Barbados- she was welcomed by several thousand well-wishers, cheered, celebrated and swamped with champagne, became a TV star and still makes money out of talking about her experience five years on just because she got to the end! But of course there was no Barbados or champagne prize for me-or any other cancer survivor- for having ‘got to the end’: just life as before- but more fragile, uncertain, more precious-and because of that more precarious. (I actually took more care crossing the road in the early days. I couldn’t bear to think of all the effort and expense of saving my life-and me- being run over by a bus. That would just be another anti climax!)

Oh, we survivors are glad to be alive- but with that gladness there is a tandem pressure to ‘make the most of life’. It means that we want to do things NOW-waiting til next week or next month is too long, next year might be too late.

There’s also the assumption that we will want to ‘get back to normal’ or; ‘pick up where we left off’- leaving the whole cancer episode behind us.. But many of us ask ‘what is normal?’ Is it enough to ‘pick up where I left off?’  And if I do put the whole episode behind me will it creep up on me when I least expect it with the same familiar set of characters? Suddenly ‘normal’ is not what we want to get back to and the things we might have picked up from where we left off are not enough. We might not even be able to find them. Sometimes we feel as if we want more- deserve more. (Barbados and champagne would be nice.) And we want to put it all behind us, but we know that we can only do that if we can keep an eye on it in the backstage mirror of our lives. If cancer catches up with us again we want to see it coming, and we want to have made the most of our run in the meantime. And if it does re-appear ? Or -as in my case- take to the stage as a whole new production? Well -then it’s fear of the known rather than the unknown. We know the score but we don’t much like the tune. And that can make us terrified, numb, or yell ‘Why me?’ to the heavens, or, it just makes us- as in my case- uncharacteristically  blasé-bolshy and bloody mad.

And yet…. Cancer is a Life changing experience Cancer as a disease may never have meaning-most of us will ask why? forever. But the experience of cancer and survivorship does have meaning. How we coped, what we learned, the relationships we built, all have worth. We may have discovered facets of our characters and personalities that we never knew existed; found out things about our deepest longings and most closely held values that we might have missed in health. For most of us among the increasing number who survive cancer, the experience positively influences the way we live the rest of our lives.

Lance Armstrong-only recently pipped at the post as the most famous cancer survivor by the aforementioned Kylie Minogue, wrote in his book ‘Every Second Counts.’: ‘The question of how to live with cancer, for me, has become how do you live beyond it? Survivorship is not unlike competition; both are emotionally complicated, and neither necessarily delivers pat answers, no matter how nice it is to think so.  In both cases, you have to constantly ask yourself what the real lessons are, what’s worth transferring to the rest of your life.’

Some of us, although not all of us, will even say that, ironically, being diagnosed with cancer was the best thing that ever happened to us. That’s the sharpest illustration of what Natalie calls the duality of positive and negative. The best is not the disease itself, the treatment, pain, nausea, hair loss, trauma and bewilderment involved- that should never be trivialised. We need to keep an honest assessment of what we have been through and retain our empathy for those who are still there. Rather, that the something close to the ironic ‘best’ that the experience of cancer might have given us, is an opportunity to take stock, look at life from a different perspective, use that lens I mentioned earlier to see life for what it really is .

Then there’s the individual experience of survivorship. We all do it ‘our way’. There can be no sweeping generalisations. But we can share personal metaphors for survivorship. In the kitchen of our Victorian house we have a large original housekeeper’s cupboard. It is cavernous. I would love to think that within that cupboard I have ‘a place for everything and everything in its place’- a nice neat series of boxes on shelves but, of course, that just doesn’t happen. My friend Mandy- a cancer survivor of some twenty one years- with many not so happy returns-says that she lives according to the ‘box on the shelf principle’. Cancer, from a survivorship perspective, she explains, has to be managed in something rather like my housekeepers cupboard. ‘You have to put it in a box’ she says. ‘You needn’t label that box ‘cancer’ but you know that’s what it contains. Then you fix the lid on tight and put it high up on a shelf. Every so often, either by choice- maybe because you think you ought to reflect on it a bit, or by necessity- when a medical check up is due, you will need to get out your box. Sometimes it will have been pushed right to the back of the shelf, or become hidden behind the other bits and pieces of your life. It may be dusty; the lid may have become wedged. It may even be a little battered. But it will still contain your experience of cancer. You will take it down, lift, or lever off the lid and peer inside. Sometimes what is there will alarm you, sometimes you will just stick your tongue out at it. Occasionally, that box might even fall out of the cupboard, its contents emptying at your feet when you least expect it. Yet that box is not something to be nervous of. It will mostly stay on its shelf but it must never be so rarely opened that we forget its significance-because sometimes we will need to look at the contents in close up again. But generally we will be able just to take a brief look, even live with the lid off for a while, then put the lid back on, tuck the box on the shelf, close the door and get on with our life.’
That box on the shelf principle is-for Mandy-the best metaphor for survivorship.

For me, cancer survivorship is like living with the memory of an embarrassing ex- boyfriend. Occasionally he pops up into your head and you feel sick, the oddest things remind you of him and you’re amazed at what you remember, sometimes you even feel a bit of nostalgia. But mostly you hope you’ll never meet again. On the bad days you have a horrible feeling you will-and probably at a moment when you are least prepared and most vulnerable.

One thing that almost all cancer survivors will agree upon is the way in which an experience of cancer changes us. While there will be uniqueness in that experience, there will also be a certain universality.

So-from a personal perspective-what changes?

Firstly, survivorship transforms relationships…
Cancer survivorship heightens the importance of people. Not just those we hold most dear, but every individual.  In all the care and concern, friendship and love I have received I have recognised the priceless value of people and my relationships with them.  I can’t help but ask how that recognition should shape the rest of my life.

Survivorship encourages thankfulness
It reminds me just how very much I take for granted: financial security, freedom of choice, independence, employment, home, family, friends.   And beyond them, nature, music and art, laughter, tears-yes, tears and-the joys of working together, sharing together and watching my children grow (because several of my friends didn’t). I still moan, I still complain, but I hope I am more thankful.

Survivorship puts suffering in context
Of course cancer does not have the monopoly on suffering. (For many, cancer will be a mere blip compared to the suffering they have known in other areas of their lives.) And suffering has no meaning on its own. But in the context of relationship it does have meaning. It encourages compassion, empathy, tenderness and honesty, breaking down the barriers of pride and self sufficiency and making us realise how much we need each other. Suffering forces us to face up to ourselves at our lowest point. We dialogue with ourselves, and think about the meaning of life even when we are unsure of the certainty of it.

Survivorship shrinks the spectre of death
Living near the edge of life is not a comfortable existence. Nobody likes to peer over the precipice and consider what might be below. That spectre of death will, to some extent, continue to live with us in survivorship. But just facing it, giving it a shape and form-even a personality, reduces its power over us, and reduces the fear.

Survivorship repaints the vividness of life
How we dilute the vividness of life in taking it for granted! It is as if our familiarity breeds a contempt which washes the colour out of it. Surviving cancer encourages us to stop, look, take time to listen; be slower to speak; to have more curiosity about the world-and to celebrate life. One of my survivor friends keeps a bottle of champagne in his fridge. When I joked about his apparently luxurious lifestyle-where I keep a pint of skimmed he has a bottle of Bollinger-he explained: ‘Life is for celebrating, I never know what each day will bring that’s worth making whoopee about. I want to be prepared!’

Survivorship reduces the terrible and magnifies the ordinary
Survivorship makes those things which were so important BC seem trivial, and elevates the apparently ordinary to the highest priority. Mud on the carpet is just mud on the carpet-not the end of life in the lounge as we know it.  I try to really live the small moments of life because I know that they can become bigger in the living.

Lastly, survivorship offers the opportunity to be inspired by a mission
‘What will I do?’ asked Lance Armstrong. ‘What’s the highest and best use of myself?’ What will I make my mission?’. There is no right or wrong way to live a saved life. But many of us will take up a  ‘mission’. That mission might be to live a quiet life, see more of our grandchildren, raise a million for charity or finally attempt that circumnavigation of the globe by scooter. A sense of mission is something we often lose later in life. We allow ourselves to become cynical. The recognition of the crumbling dreams we have held since our youth dissuade us from dreaming new dreams.   Cancer survivorship offers us the opportunity to dream again, challenge ourselves again.

But all of this doesn’t mean that we cancer survivors expect to live with a 500 strong gospel choir crooning over our shoulders. Neither do we want special status or to dine out on our experience of cancer for ever. Survivorship is not easy-it has its challenges and difficulties:many of them almost impossible to communicate to those not ’in the know’. I suffer certain types of fool less gladly these days; hate wasting time and expect the best in effort, attitude and understanding. But that maybe just age!
But we are changed people-and those changes are motivating. They give us perspective, potential, power. As cancer survivors we are largely an anonymous number, weaving our way through the crowd of life, unnoticed, unremarkable, except for those things our cancer experience has given us. We have yet to harness those three things-perspective, potential, power- either individually or collectively. Not just for the benefit of the cancer community, but for society as a whole.

There are also some myths to be exploded.

Cancer survivors remain unrecognised as having valuable perspective, unique potential, or the power to motivate positive change. Society prefers to label, stigmatise, patronise (‘How brave you are!’) and marginalise those who have had cancer.
We are all too often viewed as slightly delicate individuals, probably with a slightly lower IQ than the rest of the population-at least for the duration of treatment- and with a weakness for wholefoods, coffee enemas, self help manuals and holidays on retreat in Skye.

But most of us have been changed, motivated, energised-even if completely knackered ( excuse the not terribly ladylike terminology)-by our experience. We want to get out there and DO something with that experience. Not in campaigning mode or by sharing the wholefoods and the retreat on Skye-but just by applying our experience in whatever area of life we find ourselves. Rarely are we asked what we have learnt that we can pass on or what we have been given that we can share.

Celebrity cancer survivors are admired, feted, wondered at, applauded for their courage-especially if, like Lance and Kylie they use their bottoms to ride bikes or sell records-but they are rarely consulted on the real issues. Never asked, ‘What can we learn from you? How has your experience changed your life? How can your experience change all our lives?’  Perhaps to do so would be to come too close to either the person or the glimpse of mortality they give us. Are we afraid?  Too afraid to share even our humanity? Admiration only requires distance. Sharing requires intimacy.

Perhaps- in a manner of speaking- we should challenge the world to become intimate with cancer survivors. Indeed with any survivors-to listen and learn.
And why should you-as the medical community- work to save those lives and then wave bye-bye? Why shouldn’t you enjoy the fruits of your labours?
.
We so desperately need to change the public mind set about cancer survivors.

We don’t ‘get’ cancer survivorship in the UK-we don’t see it as a positive, proactive state-it’s still just a slightly icky, embarrassing relief. I don’t believe that cancer survivors in the UK will ever be the movement they have morphed into in the States. That’s not the English way-and I’m not sure its always helpful!

But we do need to be recognised -not just as a group with specific long term medical and emotional needs- but as individuals who are a positive, diverse, motivational resource-not just for the cancer community, but for society as a whole. I long for the day when ‘cancer survivor’ on a CV or job application will be seen as a positive thing because it implies determination, fresh perspective and an ability to take in the bigger picture.

When a CEO of a major company says ‘It was my experience of cancer that motivated me’ while another admits he gave it all up because cancer made him see his kids were more important.  That’s my perspective-That’s my vision. I would love for you to share it.”