Thistles and Roses

a post about the Scottish referendum and a lot else besides

thistles and roses

I learned one or two things today while putting this post together.

1) Carol Ann Duffy is Scottish (maybe I knew this and had forgotten)
2) There is a market for wedding bouquets made of thistles and roses (try Google images and see).

Well, Carol Ann, I am never surprised to read another great poem by you. I love your anthology “The World’s Wife”; and your “Prayer” is probably in my top ten poems of all time. It must be really hard to write to order as Poet Laureate, but you don’t just manage it, you embrace it. And this latest contribution is just — well, words fail me, though they clearly don’t fail you. This was in Saturday’s Guardian, and I am reproducing it here (in case my readers can’t be bothered with a link) because it is unmissable.

September 2014

Tha gaol agam ort.

A thistle can draw blood,
so can a rose,
growing together
where the river flows, shared currency,
across a border it can never know;
where, somewhen, Rabbie Burns might swim,
or pilgrim Keats come walking
out of love for him.
Aye, here’s to you,
cousins, sisters, brothers,
in your brave, bold, brilliant land:
the thistle jags our hearts,
take these roses
from our bloodied hands.

Carol Ann Duffy

[The Gaelic salutation translates as: I love you.]

Wow. Good for those of us with short attention spans – not a word wasted. Subtle rhyme scheme. Straightforward language – nothing pretentious here. And how she captures the complexity and ambivalence of a close relationship – be it between nations, siblings, spouses. Love, beauty, admiration, rivalry, interdependence, difference, similarity, and the capacity for each to wound the other, and to forgive.

The very stuff of wedding bouquets. Spikey bits and soft bits.

Preventing Overdiagnosis

http://www.preventingoverdiagnosis.net/

Above is the link about the conference referred to in my last post.

And below is the text of what I said to the research planning meeting on “Communicating about Overdiagnosis”.

Personal relevance

I am a survivor of the UK Breast Screening Programme. I do know something qualitative educational research, but I’m not a medic nor a statistician. I have learned the hard way about overdiagnosis and breast cancer in the last year, but as I am not au fait with all the latest research, I will address just the first two questions on today’s brief, and add one crazy idea about how I would spend my ten million dollars on research.

In June 2013, following a screening mammogram, I was diagnosed with a small invasive ductal carcinoma. Somehow I had completely missed the debate in the media about overdiagnosis.

Three days later, I typed the naïve question into Google, “Does breast cancer ever go away on its own?”. I was immediately swamped by a deluge of information about overdiagnosis, which I read with a mounting sense of shock and outrage.

After several weeks of prevaricating, and under pressures that you will understand, I did eventually agree to a mastectomy. (by that time, the cancer, though low-grade, had been found to be multi-focal). You will also understand the “decisional conflict” I felt, and continue to feel, since I know – and indeed knew when I made that difficult choice – that mammograms are best at picking up small, slow-growing cancers, not the life-threatening ones. It is quite possible that I am one of the overdiagnosed, but I will never know.

It is because I did not have the information I needed when I needed it that communicating overdiagnosis is relevant to me. I do not want any one else unwittingly to end up as a cancer patient, to have imposed upon them similar agonising decisions, or to feel so duped.

Challenges

When I myself have tried to communicate about overdiagnosis, I have been met mostly with incomprehension. It is a difficult topic, at odds with the popular perceptions that all breast cancer needs radical treatment, and that catching it early saves lives. Communicating overdiagnosis also involves statistics which most people – including me (and more worryingly, many medics it seems) don’t fully understand. In brief forays into cancer charity chatrooms, I also met veiled hostility: “Count yourself lucky they got it early”, they said. And condescension. “Only look at the information on the cancer charity websites”, they said. My consultant told me I was making things very complex and advised me not to think. So my communication attempts haven’t really had a great reception.

To me, though, the key challenge in communicating overdiagnosis is negotiating the associated ethical issues. I couldn’t get an answer out of the Breast Screening Programme when I emailed (twice) to ask about the ethics of sending me – without any qualification – an information leaflet which had been deemed to be unfit fro purpose. (I got the pre-September 2013 version, which was then under revision. It included one solitary sentence about the risk of being treated for a condition that might never cause any harm.)

But I know I may not be typical. What do people want to know? Knowledge can be uncomfortable and distressing. I found I wanted to protect other women with me in the breast cancer ward from what I knew – because it was too late for us all, by then. So there are ethical challenges in relation to communication: what information to give, when, and to whom. Even raising the issue of overdiagnosis (before any screening or intervention is discussed) releases the genie of uncertainty from the bottle, and presents women with choices that maybe they would rather not have. One criticism of the Swiss Medical Board’s report of Feb 2014 was that the evidence was unsettling to women, to which the response was, “but we wonder how to avoid unsettling women, given the available evidence”. Too right. I think it’s difficult even to involve women in a research focus group without imposing information upon them. How can they know if they want to know something they don’t know already?

Research if I had $10 million

My ten million dollars would be spent on researching how to communicate at a very early stage: that is. trialling ways of helping healthy individuals to understand their own attitudes to risk in relation to their health. This might involve research into the effectiveness of profiling exercises and conversations devised to gauge how much personal responsibilty and control the individual wishes to accept. In my own case, for example, my choices in childbirth were for minimal intervention. I limited and delayed the vaccination of my daughters. I read extensively about both topics. So, with an impartial “Health Counsellor” reviewing these choices with me, I might have concluded that a) I like to be fully informed b) I prefer to keep medical intervention to a minimum and c) I am prepared to accept the associated risks.

In association with such a project, other research would focus on developing communication approaches which neither withhold information nor impose more than is wanted. Perhaps along the lines of those “Choose your Own Adventure” novels, where there is a choice of routes for the reader (“If the character made Choice A , go to p.53”, “If he made choice B, go to page 59,” etc.).The Cancer Research UK website does this quite well, signposting clearly what is coming up on the page, and including links for skipping pages, thereby reducing the likelihood of a reader unexpectedly confronting unwelcome information.

In a parallel fantasy universe, this was all trialled and then rolled out in time for me. So back in Spring 2013, my Health Counsellor and I agreed that I probably wanted a lot of information about my choices, which she skilfully directed me to, guided by the kinds of questions I was asking. I decided against mammography. I felt informed, not fooled. I developed no symptoms.

Or – maybe I did develop symptoms some time later. So I went immediately to the doctor to discuss the help I knew I needed – my trust in the medical profession undiminished.

It is a universe I would love to have inhabited.

Fan Mail

images

I’m in Coach E on a Virgin train, somewhere in Middle England, on my way home. Nearly everybody (including the five-year-old opposite ) is, like me, plugged into an electronic device. Many are in virtual contact with – who (or should that be “whom”)? Business partners? Families? Or are they following Facebook friends, or the rich and famous on Twitter? I wonder what the global reach from Coach E is.

It’s so easy to be “in touch” and to be sharing our worlds and experiences through the ether (blogging being another example). But to me, real meetings – even fleeting ones – are still important. I’m not sure if celebrity-stalking counts, though our girls still recall the thrill of meeting David Tennant at the stage door in Stratford.

My real meetings of the past day or two would not, in fact, have happened without the internet, as they started with the e-contacts I was able to make with the big hitters in the world of Preventing Overdiagnosis. And in truth, my meetings at the research planning meeting of the same name were mostly brief. But it was very affirming to be in the same room as so many people who are making my concerns their life’s work. It was gratifying to be welcomed by them, to find that (bar some of the statistics), I could follow a good deal of the discussion in an unfamiliar domain and context, and to feel that my contribution was valued.

I really took to this company of researchers and medics. At the risk of blatantly perpetuating national stereotypes, why is it that the Scandinavians (who were well represented, not to say dominant) are so likeable? Is it their perfect, ever-so-slightly accented English that’s so admirable, or their apparent ease with themselves, or their egalitarianism? This is not to discount the friendliness and directness of the Canadians and Americans and Australians (oh, and the British –).

Common to all was a huge fund of knowledge, and – mostly – also a humility and willingness to consider other points of view. I do suspect Peter Goetzsche of zealotry (but I will let him off, because I agree with him). I wanted to shake his hand and say thank you – he was one of the first, I think, to dig out good evidence on the dubious benefits of screening mammography. It is curious, that, though the knowledge is painful because it came too late for me, I am still glad to know it, and to know that these people are working to find out more.

They may not be celebrity medics in the way that the Embarrassing Bodies doctors are (and the dress code was more sweat shirts than tight shirts and pencil skirts). But you – Peter Goetzche, Per Hendrik Zahl, John Brodersen, Alex Barrett, Kirsten McCaffery, Hazel Thornton, and those others I met for the first time too – you are my celebrities. I am glad to have met you for real. I’m a fan.

Rattling My Cage

Today it became clear that I am not entirely over it. I don’t need to talk about it all the time; neither do I mind at all talking about it when it’s appropriate. But if I feel MISUNDERSTOOD on the subject, or MANIPULATED, my cage rattles, and then I rant. (Using capital letters like this is, I think, a bit childish – but, remember, the Blog is the place where I sound off, and in the upper case if I need to).

I have written before about my reactions to people who try to get too close (see “Intrusions and Hostilities”, October 2013). In the last few days, I have had two encounters, one of which – the cloying, getting-too-close one – has left me seething. I will deal with that one first. Let’s call the person concerned A. Like all the people in this story, I do not know her very well. She’s not exactly a friend (and now she probably never will become one.)

A prefaced what followed by saying that she had been looking forward to having a proper conversation with me, and that a third person (B) had told her I had had some health issues (I know B has read at least some of the Blog). A did not say, “How are you?”. She did not say, “Are you OK talking about this today?”. She did not consider my perspective at all. She did not ask ONE question. Instead, I was subjected to a long – and I mean long – story about her own and her family’s history in relation to breast cancer. Incidentally, she hasn’t got it, so I am not inclined to make allowances for the distress and self-obsession of the diagnosed or the ill.

I am INCENSED by the fact that she clearly had not bothered before – and did not bother during our encounter – to find out anything about my experience – she just assumed that we shared common ground. She had NO IDEA about what I have learnt, the dilemmas I have faced, or my peculiar pain – otherwise she could not have spoken as she did. By about her third sentence I was wanting to interject and say, “Hang on a minute, this is not how it has been for me –“. But there was no space for me to do so.

She set up a kind of intimacy based on a false premise (We Women Have Shared This Difficult Experience). I HATE fake intimacy. It makes me feel manipulated. And then – and THEN! – perhaps based on this fake – she shifted topics and went on to tell me that another person (whom we both know, let’s call this person C) had done some horrible things to her. She doesn’t know how friendly I might be with C; again she ASSUMED that I would share her view.

No way, no way, A, even though you claim the moral high ground for your perspective. As soon as it became clear that we weren’t really going to have a conversation, that you hadn’t done your research and that you were intent on telling me your own story oblivious to the possibility that it might cause distress, you lost me. Round about your third sentence.

Because I am basically nice, you will note that I have tried to protect A’s identity. Not that there’s much danger of her reading this, since she’s not interested enough. By contrast, a few days ago, I had an email from E, who clearly had read my blog in some detail, engaged with it, and told me what it had meant to her. She even had the common decency to wish me well! She is much more likely to read this post than A.

So, dear E – your empathetic, witty, and unsentimental response was just what makes me feel UNDERSTOOD. That’s what I need. Thank you. That’s friendship. And it isn’t fake.