See the link for my daughter’s article which is concerned with two of my major blog themes.
We went to see a production of A Pacifist’s Guide to the War on Cancer in Manchester recently (an excellent spot by my brother-in-law). The show is now going to London, and I will be interested to see what the reviewers make of it there.
There was something pleasingly “meta” about it: the writer did a preliminary voiceover about the impossibility of making a piece of theatre about cancer, and intervened again in the final moments to direct the action of both actors and audience. The music and dancing were great, and exploded some myths. My favourite number was an energetic rendering entitled (excuse me) Even c**** get cancer. This is dead right: illness of any kind never made anyone morally superior. The cast was diverse and talented. The writer had consulted with people who have had or are living with cancer, and a local woman with cancer came up on to the stage at the end of the production to tell her own story briefly.
I recognised the experience of endless waiting and escalating uncertainty; and I especially recognised the insistence of the central character that she didn’t really belong in the cancer wards and clinics. She would be out of there soon – it was all a mistake (only it turned out it wasn’t).
Well, I never belonged in the cancer clinic, did I? And I’m still talking like that. I have wondered loud and aloud and long if my cancer Thing was all a mistake, as those of you who have read my previous posts will know. And I didn’t identify much with some other aspects of the cancer experience as it was portrayed in the play. The production was very big on how cancer pursues and haunts its hosts. Characters in bulbous, misshapen, sparkly, tentacled costumes dogged the actors and caught them out and hindered them. By the end, cancer had invaded the stage itself; big balloon-like structures had grown before the audience’s eyes and forced some of the cast into the stalls.
Because it appears that this production was thoroughly and sensitively researched, I have to believe that most people who experience cancer experience it like this – as something encroaching and overwhelming and terrifying. The production opened with the voiceover suggesting that “cancer” is “the word we fear most of all”. But I only fleetingly felt that fear: most of my energy was pitted against the medics who (according to my narrative) set me, against my will and without my consent, on the conveyor belt of treatment, clinic visits and side effects. It was them I experienced as invasive and overwhelming.
And this is the conundrum. There is a possibility that I was so scared of cancer that I couldn’t even look at my fear directly. Maybe I had (and have) such an intractable case of denial that I could only approach the Big C sideways. And undeniably, cancer can be fatal, and cancer treatment can disfigure, maim and sicken. But wait. Here am I, three years after diagnosis, probably fitter than I have ever been. Here is my husband, who now has a small skin cancer on his head. I fairly confidently predict that, after its imminent removal, he will live on unscathed but just slightly dented. Here are hundreds and thousands of people who have undergone cancer treatment, walking around, unidentifiable and indistinguishable from the general population, and often as well as their neighbours. Survival rates for many common cancers are increasing all the time.
What I’m trying to say (again) is: let’s get the fear in proportion. Let’s call out the Mancunian Matters review of the Pacifist’s Guide which described the play as “a creative take on how we look at terminal illness”. This is sloppy talk. There is, of course, a relationship between cancer and terminal illness, but we should not equate the two (even in this play, of the eight or nine characters who had cancer, only one died). Cancer is in fact an everyday condition: one in three of us get it in some form. There are many other common conditions and events which can be life – threatening but ain’t necessarily so: among these are stroke, heart disease, diabetes, and simply falling over. But I have yet to see even one obituary or death notice describing the dear departed’s “battle bravely fought” against a broken hip. Which is what my dad ultimately died of, and his dad before him. And there were no songs or sparkly costumes.
Follow the link to an article I was asked to write for an Australian online publication: my somewhat sideways “take” for Breast Cancer Awareness month.
Two interesting articles here. The first – from Australia – is not entirely anti-screening (see, I’m not a zealot really), but it does suggest that balanced information is what women need – yes, absolutely. The second is about suggestions of a change of approach to the UK screening programme, and I wonder if it is a political move. Realising that the pressure from the pro-screening lobby and the only partially-informed public is too great for a complete dismantling of the the NHSBSP to be acceptable, Michael Marmot suggests increasing screening for those deemed to be at risk, and -maybe – reducing it for other women.
I am cautiously positive about this. Because medics would need to explore the concept of risk with the “at-risk” women, and give more detailed information. IF they could do this in an unbiased, open way, without exerting pressure, this might be better than what we have got at the moment —
Advice on breast screening – from the Australian Breast Cancer Network:
‘Call for a change to breast cancer screening approach’ – Pippa Stevens, BBC News, 22 March 2014
A study analysed 53,467 women between 2009 and 2013 and found 14,593 women had an ‘above average’ risk of developing breast cancer. (Presumably there were another 14,593 (50%) women who are below average risk.) Professor Michael Marmot is calling for a trial.
Since I last posted, we have moved house. We are still coming round from the upheaval, and are busy helping B’s parents to move, too! But the little house and the large office are shaping up; I cooked apple crumble for 50 yesterday, and B is digging on a land party on Sunday (we have benefited from other people’s gardening and cooking as well). As I said before, busy is good, and though I had to be efficient about re-registering with the local surgery in order to maintain continuity in my medication, I haven’t given breast cancer much thought recently. But before the rush started, I sent a submission to this Select Committee. This is now published along with other submissions, here (scroll down the page, noting the choice of a cute picture of a prenatal scan – not a needle, a speculum, or a mammography machine):
I have not read all the submissions in detail, but here is what I have gleaned so far re breast cancer screening.
The Royal College of Physicians and the radiologists (who both put in very slight submissions), support the screening programme. So do two cancer charities (odd – what’s their investment in it?), and Public Health England, who runs it. But this is the view of all the other individuals and groups who wrote to the Inquiry, some of them in great detail:
The breast cancer screening programme is rubbish. It is not carried out ethically: it does harm and no good; it does not save lives; it costs a lot of money.
I wonder what happens next.
One or two of you have noticed that the blogging is less frequent, but today is my birthday, so maybe it’s time for a progress report. And on the subject of getting older, I felt a little frisson when I filled in an online survey and realised that I have crossed the divide into the next age group. No longer 46-54, but 55-64 —
It’s been a busy birthday. The celebrating will have to come later: we are moving to LCH in about a fortnight; so we are frenetically decorating, getting carpets fitted, starting to move chattels over, chucking out, tidying — and there’s plenty more to do! Busy is good. The preoccupation with the breast cancer experience is just starting to take its place alongside my other preoccupations, rather than being overwhelming. I do return to it; in fact I have just submitted 3000 words to the Commons Select Committee Inquiry into cancer screening (I would post my submission on the blog, but it seems I’m not allowed to). But I have also resumed my MA studies, and today spent a happy morning in the school in which I hope to develop my project. I am tentatively working with B. and a few others on developing an INSET package for schools. So I may not be earning anything, but my brain is back in gear.
Or is it — because the most vexing side effect of my ongoing medication is what it’s doing to my head. I have always forgotten things and been noticeably slower at processing information than B; but the memory lapses are worse now; and sometimes I also have trouble with sequences. Get this: my packets of pills (the cause of the trouble) are labelled with the days of the week to make it easy to keep track, I presume. But I still managed recently to take Wednesday’s pill on Tuesday because, despite evidence to the contrary ( = the pill labelled Tuesday almost in my face saying, “Eat Me” ), I was so sure it was Wednesday. Then there are the days when I have entirely forgotten to take the damn thing anyway. And when I was painting the banisters in the new house (very proud of the finished job, incidentally), I found it really quite difficult to keep track of where I was up to. Had to talk myself through it. But hey, there are an awful lot of surfaces on banisters and spindles, aren’t there?
Actually, my biggest fear is not that my difficulties are caused by oestregen deficiency. If that’s the case, I may only be suffering as many menopausal women do. But what if these are early signs of dementia? Unlikely but possible. My Dad’s decline was not pretty and I so do not want to go there – not now, not ever. How awful to sense that you are losing it. At present I don’t trust myself to remember things, so my list-making has become anxious.That’s bad enough. No wonder poor Dad was so easily stressed.
There have been two news reports in the last two days which I have found rather odd. One told us that half of breast cancer deaths occur in women over seventy. The second told us that the number of cancer cases worldwide is expected to rise dramatically over the next generation, principally due to the ageing global population. Both of these bulletins were reported as if they were cause for serious concern – and in terms of the economic impact of such levels of incidence, maybe they are. But I think there is something missing here, and it’s this: the candid acknowledgement that we will all age and die. When the average life expectancy was thirty-five (in the Elizabethan era, say), people didn’t live long enough to develop cancer – or dementia – in the numbers that we are now seeing. Plague, or appendicitis, or any number of other conditions now easily treated would have carried them off. So I question whether cancer is actually on the rise. It is also diagnosed more readily these days (and don’t I know about that). I think it would be far more worrying if less than half the breast cancer deaths occurred in women over seventy, because the corollary would be that more younger women were dying before their time.
I’m not suggesting that we should write the over-seventies off and not offer them the best treatment choices available to prolong their lives and (maybe even more importantly) the quality of their lives. Nor am I suggesting that as we ourselves age we should just give up and not look after our health. I do hope and expect that at seventy – and well beyond – I will still have people and things I want to live for. But I am going to die, if not at seventy, then at eighty or ninety. I can’t choose what will get me in the end. It’s quite likely to be dementia or cancer, however much I may rage against both. Same applies to you. And reports which imply that something is wrong when the old get ill encourage us to think that we can all go on for ever. We can’t. It’s the circle of life. This shouldn’t be news. Time to get real.
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.
Another article (from the USA this time) about overdiagnosis and overtreatment of women with breast cancer – and about how women with advanced cancer derive little benefit from the screening programme.
Effect of Three Decades of Screening Mammography on Breast-Cancer Incidence
This post (from someone I don’t know who has a more aggressive form of bc than me) is so good that I am reblogging it here. I hope I am this generous and sane.
I love Stephanie Dowrick’s work. So many of her ideas have become a part of my thinking that it can surprise me when I re-read one of her books. “So THAT’s where I got it from!”
In ‘Universal Love’ she taught me a life changing lesson; No single human being can meet anyone’s every emotional need. Obvious really. It’s ridiculous to expect anyone to do so. Yet romantic love songs would have us believe that our ‘soulmate’ can somehow be everything we ever needed. Stephanie’s opinion was eloquently reinforced when I complained to a girlfriend one day about my husband’s desire to fix my problems rather than just listen and empathise. “Well you don’t have a husband for that. That’s what you have girlfriends for!”
Since that time, along with taking responsibility for my own happiness, I’ve recognised that a rich, healthy emotional life is populated by all sorts of…
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