Overdiagnosis

Hot on the heels of my cake obsession, I just have to return to the overdiagnosis issue by reblogging from “What really matters”. This post has a link to a quite excellent BMJ article which absolutely reflects my views and my experience. I am so glad there are some reflective medics out there. Storing the link here for myself and for anyone interested.

Now back to the baking.

what really matters

I read Iona Heath’s essay on Overdiagnosis in last weeks BMJ with interest. The whole essay is essential reading, but here I’ve drawn out the four important ethical implications resulting from overdiagnosis, as identified by Iona Heath:

 1.      Harm caused by labelling individuals at risk or having a disease based entirely on numbers or other aberrant investigations.

Read Tim Lott’s candid article in the Times magazine earlier this month in which he catalogues the confusion, anxiety, and regret he felt after agreeing to undertake a PSA test.

“Oddly it was the least threatening outcome that worried me the most …… Not so much an aggressive cancer, which one could face head on and try to deal with, but the existence of some kind of tiny growth that might live in my prostate unthreateningly for years. It would be like walking around with a loaded gun pointed at your head that…

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A lesson from my niece

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http://www.deliciousmagazine.co.uk/recipes/chocolate-beetroot-cake

My sister keeps a cupboard full of baking ingredients. One of her young daughters finds baking very therapeutic, so in moments of stress, out come the baking pans and the mixing bowls.

I am inclined to agree that baking is one of the ultimate comfort activities. Baking is not like preparing a meal. We all need to eat from time to time, so meal preparation is a necessity, though of course it can also be pleasurable. But baking is not essential – not when you can go and buy good bread so easily. I don’t think I would ever bake a cake just for myself, though I would cook myself a meal. Baking is a bonus, done for pleasure, comfort and that peculiar form of nourishment  – not necessary but so sustaining – that comes from sinking your teeth into good bread or cake: maybe a bit stodgy, maybe a bit sweet, maybe chewy, crumbly, fruity, spicy.

Baking is also for sharing, and I reckon it also nurtures relationships. It’s an easy way of making people happy, and of getting a fix of appreciation and even admiration if you feel you’re running a bit low on either. And then there’s the generosity it encourages (or at the very least, the selfishness it challenges!): learning not to fuss if she’s got a bit more than me; letting someone else have the very last piece; letting someone else lick the bowl.

I’ve never been very successful with  pastry, but I’ve had some hits with bread and cakes. One of my best ever is rhubarb and custard cake, inspired by the rhubarb crop in the garden in early summer. I only make it at that time of year. It is gorgeous – but, as well as healthy rhubarb, it is unfortunately also full of butter and milk. In my new slightly careful world, I may not be making it in the same form again.

However, the age of indulgence is not dead. Last weekend, it was soda bread – slightly suspect, as I was using up old sour yogurt (so not dairy-free) – but quick, easy, and requiring only ingredients that we almost always have in. Another recent innovation here has been apple cake, made with our windfalls as it’s a good way to use up the grotty ones. The liquid in the cake mix is apple puree, and you don’t need to bother to get the apple puree too smooth – it’s great with the odd lump of apple. This one is vegan – could be useful in our new co-housing life where vegans need to be catered for.

But the ultimate is the recipe I have provided a link to: chocolate and beetroot cake. Again, it came about because we had some beetroot in the garden to use up. You have to grate the raw beetroot, and on my first attempt, the final product had discernible lumps of beetroot in. It was still fabulous, though. Second time around, I hit on the idea of whizzing the grated beetroot up with the liquids, thus eliminating the lumps. Even though this time the cake sank a bit, it was, I have to say, fantastic.

It must be good for you, mustn’t it? All that vegetable content; ground almonds (good for calcium); no nasty fats, no dairy (I don’t use sour cream for the icing, just chocolate, icing sugar and hot water), the best kind of chocolate. Let’s just not worry about the sugar.

I can’t tag this post with any of my usual tags. I did wonder if baking is a “worthy” topic to blog about (since when did blogging have be “worthy”, I wonder!!) But as I said, there’s something here about comfort and nourishment and pleasure, and about my ability and willingness to do it for myself. I think we all need a bit of this as winter comes in. And maybe this year I need it a bit more than usual.

Windmills of my mind

windmills

Like a tunnel that you follow
To a tunnel of its own
Down a hollow to a cavern
Where the sun has never shone,
Like a door that keeps revolving
In a half forgotten dream,
Or the ripples from a pebble
Someone tosses in a stream

The picture for this post was nearly a hamster on a wheel, and that might actually be more appropriate. But as I was out for a walk this morning, I remembered this song, and looked up the lyrics when I came home. Wikipedia also tells me that the composer was French and the French lyrics are entitled, beautifully, “Les moulins de mon coeur”. I’m not quite pretentious enough to put up a French title (though it was a close-run thing).

I really wanted to post a tranquil rural windmill picture. But I had to choose an image which conveyed something harsher, grinding, maybe with grating mechanical noises. Because what goes round and round in my mind is:

I want an apology. I want an apology. I want an apology. I want an apology. I want an apology ——-

I have written twice to the NHS Breast Screening programme telling my story, and asking if they think it was ethical to send me (without any warning or caveats) an information leaflet which they knew was not fit for purpose while they were working on the new one. They have replied (but namelessly, no signature or name on the end of the email), explaining how complex it is to produce a new accessible leaflet and check the information. They haven’t responded to the bit about ethics.

They are right – it is very complicated to work out what is good information. But can they not say SORRY?

B thinks they probably can’t; because saying sorry would be to admit some liability or responsibility (although I have told them I would never sue). In any case, if you are director of the screening programme – or even if you are an employee whose job it is to answer the emails sent in by angry women – you probably believe that the screening programme does more good than harm. At least I hope you do, otherwise the job must be soul-destroying.

I can tell them what I want them to say.

SORRY that we caught you at the wrong time, and that you had to be one of the last women to receive that old leaflet.

SORRY that as a result of screening, you are experiencing such ongoing distress.

SORRY that the screening programme turned you into a cancer patient, when there was far more chance that you did not need to be one than that the cancer we found would kill you.

SORRY that you had to take such an impossible decision about whether to accept treatment or not. And that you are having such difficulty living with that decision.

SORRY that the suggestion (on the leaflet you received) that early diagnosis might help you to avoid a mastectomy was not true.

But most of all, SORRY that you feel you have been fooled. That we put you in a position where you could not make an informed choice about whether to go for screening or not.

So that you could have avoided all of the above.

Today I have decided that I will never, never go for a monitoring or screening mammogram again. I want my surgeon to examine me, and I will examine myself. If either of us is concerned by symptoms which actually present, I will go for diagnostic mammograms, u/s, biopsies – the lot, of course. But I never again want anyone to go looking for “inconsequential disease” (see, they even have a term for it).

Of course the disease might have consequences. But what the figures tell me is that if we catch a cancer – the boring kind I’ve had – a little bit later, almost certainly, these days, it can be treated. That’s the type I’m most likely to get if I get any more. And it’s the type that the screening programme is most likely to pick up! No thanks.

There’s a very, very small chance, of course, that screening might pick up an aggressive, hard-to-treat cancer. But you see, at the moment, I’m actually feeling I would trade in a few years of my life not to re-visit the tortured dilemma I have faced this year.

That’s what the screening programme has done to me.

Anticipating surgery

Another blogger going through it who says it how it is — and the following is my comment to her:

“Hope you are recovering from surgery. I had a right-sided mastectomy in August and I do recognise a lot of your feelings of loss and grief. And your feelings about prostheses being fake (let alone reconstructions). Though I have started wearing one some of the time.

I am fully recovered from surgery and am very well physically, but still get sad jolts re my loss, though I’ve never been into make-up and beauty regimes and high fashion. I think it takes a long time —

All the very best. It feels and is lonely, but it helps me somehow to read of your experience so plainly put.”

nopinkribbonsplease

I’ve been struggling with how to write this post for some time, knowing that it was inevitably coming. On the one hand, this feels so incredibly personal to me, and I feel some unease in talking about it in this somewhat public medium that is read by people with whom I normally maintain some sense of boundaries. Like my professors. Or my parents. Or Miko’s teachers. And on the other hand, writing this blog has been such a gift to me, for which I have been doubly reinforced. First, by the act of writing itself; sharing my personal process has been instrumental in moving me through it. Creating something, even if it’s just this electronic account of my feelings, during a time in which it is all too easy to only think about sickness and death, has fed me in a way I can’t quite describe. And second, by the…

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Threads

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This is where I repeat myself again, but remind myself too that I write posts first for my own sanity/therapy, and only then for my readership.

A bit a meltdown today which I didn’t see coming, although I have been aware of feeling a bit low for a few days. I started crying whilst driving over to my piano lesson, and my lovely friend/piano teacher (FPT) offered me tea and a listening ear  – and then taught me piano once I had pulled myself together. Bless her, just what I needed.

Pull yourself together. I always read the blog posts from http://www.positive3negative.wordpress.com. She has a lot more to contend with than I do, and she is pulling herself together. She is determined not to be defined by her cancer. She is keeping it just on her blog. I feel she is doing better than me (though how would I know, really).

I am perfectly well. Side-effects of medication = minimal (except, possibly, for this emotional lability). Medical prognosis = excellent. Weight gain = zero, and looking good. I also now have a permanent, well-fitting and surprisingly comfortable prosthesis, so “no one would know”.

No one would know? That phrase in itself provokes contradictory responses in me. Not everyone needs to know; but hence I can’t answer the casual question, “How are you?” when it’s asked by those who don’t (I avoided an ex-colleague in the supermarket recently). And I looked at familiar people in a meeting at school last night, and thought, “But they don’t know”.

So I haven’t pulled myself together. There’s my perfectly-well, coping, get-on-with-it, this-is-not-a-big-deal thread. But there’s the thread of shock, trauma, loss and uncertainty which caused me to unravel a bit today. These two co-exist, though the latter is not always to the front. While crying on my FPT’s shoulder, we agreed that the world is still the same, and yet at the same time, my perception of it has shifted. We also talked about my low confidence – particularly professionally – which makes it really hard for me to screw myself up to ask for something  – to ask someone to accommodate me. FPT suggested that I might be feeling an additional need to protect myself following the assaults of the summer, so that it’s harder for me to take risks. Maybe that’s right. Yesterday, I couldn’t even bring myself to phone up a tradesman we want to consult about fitting some blinds (but I have managed it today – small success!).

I am also suspicious of myself. Am I a sympathy-junkie (see “No Camellias Please” on the positive3negative blog)? Am I not letting go of the trauma thread? Will I be able to move on from here? Will I still need to write posts about cancer in a year’s time?

Yes and No

B and I sometimes have a conversation that goes like this:

B: “Shall we /what if/ how about ——?”

Me: “No.”

After some further discussion and negotiation, sometimes my “No” changes to “Maybe” and even sometimes to “Yes” (and sometimes it is still “No”). The matter maybe local and transitory (“Shall we invite X and Y over for dinner?”; “Shall we go to the pub?”). Or it may be life-changing (“Shall we move house?” “Shall we sell one of the cars”?). But very often my first response is to say, “No”. One of my sisters raised my awareness of this tendency recently, because she thinks that her default position is “No”, too. It might be a family trait (our Mum often does it too).

So why do I say, “No”? I think sometimes it feels that saying yes – even to something fun – is too much effort. It’s easier to stay at home (especially in November) on the sofa with the knitting and a cup of tea than it is to get up and out to the pictures, even if the film is very enticing. That’s quite an admission isn’t it – how lazy!

Maybe I’m also in a bit of a time-warp. When the kids were tiny, an adventure with them did entail massive amounts of organisation and effort. Transport. Nappy bag. Spare clothes. Amusements. Getting them togged up. Jollying them along (though they were adaptable and tolerant, most of the time). And a trip out without them involved finding and paying babysitters. Even a dinner party at home involved getting them into bed and then starting the cooking and entertaining. However did we do it (and we did do it quite a lot)?? Now I have less excuse, and I’m still saying no. Maybe the memory of all that effort lingers, along with the memory of the fun.

Caution is no bad thing, particularly regarding big decisions, and especially when your partner (like mine) has an impulsive streak.(Paradoxically, he thinks I’m sometimes prone to saying yes – being too eager to please, when I should say no. And he may sometimes be right). But an encounter with a potentially life-threatening condition makes you realise that your time is limited. My life expectancy has not changed as a result of recent events; it’s just that now I know my days are numbered. And thirty years to go (say) doesn’t seem all that long, so knowing when to say yes and no is important. I have in the last few months said, “Yes” to the co-housing venture. Is that risk going to pay off? And I have said “No” to the job I found so difficult. Was that a good, well-judged “No”? (“Some complain/Of strain and stress/The answer may be/No for Yes.”)

In our house, we have often noted that I don’t readily do spontaneity. Yet I love the eager, slightly reckless, even flippant spirit of the following poem. Seems to me the default setting here is “Yes”. Maybe now I should set my own Yes/No dial a bit further in that direction.

Yes

It’s like a tap-dance
or a new pink dress,
a shit- naive feeling
Saying Yes.

Some say Good morning
Some say God bless–
Some say Possibly
Some say Yes.

Some say Never
Some say Unless
It’s stupid and lovely
To rush into Yes.

What can it mean?
It’s just like life,
One thing to you
One to your wife.

Some go local
Some go express
Some can’t wait
To answer Yes.

Some complain
Of strain and stress
The answer may be
No for Yes.

Some like failure
Some like Success
Some like Yes Yes
Yes Yes Yes.

Open your eyes,
Dream but don’t guess.
Your biggest surprise
Comes after Yes.

Muriel Rukeyser

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Making the Grade?

On Saturday, I went to a workshop for MA students. I met there a woman, J, to whom I have always warmed when I have met her on previous workshops and conferences. She’s a Year 2 teacher with a cynical take on the current phonics-for-four-year-olds policy. Maybe I also like her because she is of a similar age to me – and most of the other MA students seem very young!

I remembered that I last saw J on 23rd May (I have a very good memory for dates). This gave me a sad jolt. When I last talked to her, I was still in that Time Before (as Rose Tremain’s character Merivel would say), having just had that routine mammogram, but with no idea that a week later I would get the call-back appointment to the breast care clinic which would set the trajectory for my summer.

But I must remind myself that the Time Before wasn’t actually one of sunlit happiness. In fact, I sometimes wonder if the job trauma of earlier this year hasn’t been as bad as the breast cancer, in its own way. I feel much more responsible for my mistakes in taking and then not managing the job than I do for getting breast cancer (though I should not have eaten so much butter). And currently, my loss of professional confidence is, I think, much more marked than any loss of social/physical confidence resulting from breast cancer.

I am very glad I went to the workshop, which was about research ethics and methodology. This may not push your buttons, but I so enjoyed it and, after a long gap (I last worked on my MA nearly a year ago), I remembered why I find research so engaging. As I wrote at the end of last winter’s assignment:

Finally, and quite unexpectedly but with some sense of recognition, I have encountered the view of research as an endeavour which is spiritual – in a broad sense (Macpherson, 2008; Pring, 2001). To use the Quaker phrase, this “speaks to my condition”, and I aspire to meet the challenge to rigorous standards of care and honesty in the search for meaning.

I emerged at lunchtime really wanting to pick up the threads. And although it will be hard work, I do actually have a nugget of confidence that I could do it well. But I have a dilemma: I don’t have a working context at the moment. Whilst in one sense that liberates me from some of the ethical difficulties faced by those of researching among their own colleagues/ in their own schools, it means I have to find a way of exploring a research question as a volunteer or a guest in a school/setting. And as I am feeling very de-skilled, and wondering if I was ever in fact a good practitioner I have yet to screw up the courage to approach schools and ask if I can work with them. Why on earth would they want to cram me and my needs into their crowded days? Is it even ethical to consider it? How could I make it worth their while? Which takes us to possible research topics. I currently have a number of interests, such as children’s views of their learning; the effect and efficacy of rewards and motivation; and actually doing participatory research with children. But might it be better to approach schools and offer to research into something that is high priority for them? I think I could actually get interested in nearly anything to do with learning and teaching. It could be the playground policy. Or children’s reading for pleasure. Or how children feel about phonics lessons. Though I do draw the line at boys’ games.

I got another idea whilst sitting among those young, confident, early-career teachers this morning. I was aware that, in this small sample at least, the young seemed to have bought into the current agenda of targets/league tables/performance-related pay. That’s what they talk about. Maybe it’s all they know. Maybe they have to focus on it to survive. It was left to an Old Fogey (OF) like me (who hasn’t survived, note) to ask what “performance” might mean, and another OF – the MA programme leader – to query the limits to OFSTED’s use of the word “evidence”. So I started thinking about the perspectives of those who started teaching before the advent of the National Curriculum, let alone the Literacy and Numeracy Hours; in the days when – say it quietly – in primary schools, you made up the curriculum, and taught it in ways that seemed to work for your pupils, with minimal interference (but also, I have to say, often with little guidance). What motivated us then? What drove us when we weren’t driven by targets?

I’m not sure yet if there’s enough here for a project, or if it’s a topic that will push the boundaries of educational research in a useful way. I’d better do some reading and work up a good research question. Maybe a better topic will come to mind. But if you are an (ex)teacher in the 45+ age bracket who might be willing to participate in some sort of research about your teaching journey, let me know!! I can assure you, if you do get involved and agree to fill in a survey or be interviewed, there will be no grades, marks or assessments. That’s a promise.