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.