Intrusions and hostilities

Once, I was given a bunch of flowers which I almost immediately gave back. The bouquet was not a romantic gesture: it came from someone in my social circle who (I think) was not very well: she tended to make slightly inappropriate gestures, and not only to me.  I was far too fragile myself graciously to accept the flowers and the ostensible message (= “I can see you are having  a hard time”). Instead I responded to what I thought was the subtext (“Please be my friend”). Not having the emotional energy to say yes, I gave the flowers back.

I have been similarly harsh on a couple of would-be boyfriends. There was the one at university who, in the days before emails and texts, put a note in my pigeonhole inviting me for dinner. What annoyed me was his blithe assumption that I would be delighted to accept. I recall that he was working on a PhD in astrophysics. He had a Friar Tuck haircut and a lisp. I did not find him attractive in any way, though doubtless he had a very fine mind (and, hey, he probably knew Stephen Hawking). So I turned him down very brusquely. I hardly had the grace to maintain civil conversation with him after that, let alone a distant pleasantness (and was eventually taken to task about my rudeness by a mutual friend).

And then there’s B’s teaching colleague from former years, whose intrusions started when she phoned my mother up (never having met her) to offer advice shortly before our wedding. A couple of years later, she informed us that she had arranged a disposable nappy delivery service for the first six months of our daughter’s life (we had already bought a stack of terry nappies and a large box of Napisan). Last year, assuming that my parents-in-law were living in inadequate and cramped conditions (they weren’t), she started meddling in their housing arrangements. She sends us greetings cards which I find over-effusive and cloying. We have not told her about the breast cancer.

It was our wedding anniversary on Saturday. We are normally quite low-key about this, but we did make a bit more of it this year. During our celebratory trip to the cinema, B said, “Thank you for twenty-one happy years” – we have been married for twenty-two (though actually, in common with my fellow-blogger at http://www.positive3negative.wordpress.com, I think that the cancer experience – if not exactly happy – has had positive effects on us). 

Then through the door comes another sentimental home-made card full of platitudes. I am so riled – both by the assumption that our life together is one of unclouded, blissful, rose-tinted happiness; and by the assumption that this friend of former years is close enough to us to mark an ordinary wedding anniversary. I am so riled that I actually rip the card up.

Why do I react with such hostility when some people try to come so close? It’s not that I keep everyone at bay. My animosity is very selective. I think it’s the Groucho Marx factor. I don’t want to be a member of any club that will accept me as a member. I don’t want to be associated with the emotionally needy – the bouquet-givers and the card-senders. I don’t want to be associated with the geeky and the unattractive. I don’t want to go to a club for breast cancer “survivors”. Because I’m not like them. Am I??

Over the years I have been on a number of retreat weekends – often silent, but not always. The context has varied – from Anglican or Catholic convents, to Quaker contexts more recently. Something very strange happens on these weekends. I have noticed that almost invariably on the Friday night, I look around at the others in the group and think what a weird, dysfunctional, irritating lot they are, and I wonder what I am doing among them. But by the end of the weekend – whether or not we have actually spoken to each other much – I usually find that I feel quite differently. The others seem nicer, easier, and their oddities seem less maddening and more endearing.

What I think goes on is that in a reflective space, I have the chance to come to terms with myself and my own vulnerabilities a bit, so that perhaps by the end of the weekend, I love and accept myself a little better. And therefore I am not put into flight so acutely when I see my vulnerabilities in other people. I don’t need to protect myself so fiercely.

I have long lost touch with the bouquet-giver and Friar Tuck. And I still can’t honestly say that I have any enthusiasm for fostering my relationship with the card-sender (she lives at the other end of the country – that’s my excuse). But as we plan to move into an intentional community (Lancaster Cohousing), maybe I should think a bit about how to handle my hostilities. After all, there are bound to be a few weirdos, geeks and irritants.

Maybe it’s time for another retreat weekend.

Maybe I should even join a cancer club.

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Things That Get Under Your Skin

When I was recovering from surgery, one of my sisters sent me a beach-toyshop-type plastic orange crab with wavy legs. It took me a moment to clock the reference, and I wasn’t quite sure about the joke, though the package was accompanied by an encouraging little note saying, “Hope you feel you’ve sent this one scuttling” – or words to that effect.

The above is by way of preamble to the homage I want to pay a lovely gobbet of journalistic writing in this weekend’s Guardian. As follows:

On a visit to Massachusetts, Michael Gove seeks answers. How can failing schools be turned around? How should teachers be paid and trained? And what is that creature swimming in the rock pool?

“Is it a spider?” asks the six-year-old boy at Orchard Gardens elementary school in Boston, unfazed by Britain’s secretary of state for education crouching by his desk in the middle of reading tuition.

No, his teacher replies, the creature in the illustration isn’t a spider. “A lobster?” wonders a little girl. The teacher suggests they look at the text and pronounce the word. “Cr-a-b,” the pupils respond in best synthetic phonics style, carefully breaking the word down into sounds, and everyone smiles. Gove soon scuttles away.

How I laughed. The image of Gove scampering off energetically, lightly, insidiously sideways, everywhere he’s not wanted, but without going into anything at any depth. So apt.

But if I wasn’t blessedly shot of our over-burdened education system just now, my laughter might have been more hysterical (read about the lesson that impressed Gove the most – the link to the full article is below – it will make you shiver). Which hapless teacher/educator will be the next to feel his sharp nip? Where and what is he going to get his pincers into next? It could be you.

Another dangerous, unpredictable organism encroaching on our lives and those of our children – with the potential to cause lifelong and widespread damage. Stop him.

http://www.theguardian.com/politics/2013/oct/18/michael-gove-boston-visit-education

Lucky

This blog post has been brewing for some time. I think I have been waiting to see if the feeling goes away. However, for the past two or three weeks, I have consistently been feeling lucky.

This is extraordinary. I have already used the term “annus horribilis” to describe 2013, and the facts haven’t changed. Firstly, my father died fairly suddenly a week into the New Year. He was old and ill, and we had been losing him slowly and painfully for a long time; but nevertheless, final goodbyes are very hard.  Sounds a silly thing to say at my age, but with his death I felt that my childhood really was over. 

In the same week, I started the university lecturing job that proved to be such a nightmare for the first half of the year. My colleagues were nice, but I hardly saw them. Everyone was frantically busy. Having your own office sounds grand, but mine was in the Geography department (why??), near nobody I worked with.  It was lonely. The induction process was woefully inadequate. The hours (though they added up right on paper) were in practice unreasonable. I had to work all the time to stay ahead and feel well-prepared. Many of the students were very hard work. The job sapped my energy and any enthusiasm I had left for the education system. Most of all, it drained my self-confidence. I felt a fraud rather than an expert, even more than before. I couldn’t see my situation getting any better, given the wider stresses that the university was under. So, in late April – and with the support of my family, I handed in my notice, with no clear idea of what I might do next, but with a sense of failure on two counts: for misjudging the job and ever thinking it would be a good move; and for not being able to hack it.

And about six weeks later I got a diagnosis of breast cancer. The rest of the story you can find elsewhere on the blog.

So how, after all that, can I find myself feeling lucky?  I feel lucky because:

  • I got the best kind of breast cancer (let’s leave aside issues about overdiagnosis for a bit) – the most treatable kind with the best prognosis.
  • I didn’t have to have either chemotherapy or radiotherapy.
  • I have had stacks of support and love from very many people, from B outwards. Quite unlike the job experience.
  • At the time of my decision-making and my surgery, I wasn’t in a job. So I didn’t have any pressure to get back to work. I didn’t have to feel guilty about colleagues carrying my load. I didn’t have to compromise my recovery by overdoing things.
  • And now I don’t have to find another job at all costs. In fact, B is discouraging me from rushing into something for the sake of it. He has said repeatedly how good it is to have me relaxed at home – and indeed even able to hold the fort more flexibly than in the past.
  • And if/when I do apply for a job, there is a convincing reason for the gap on my CV. The co-incidence of Career Crash and Cancer – neither of which I would wish on anybody – has positives as well as negatives.
  • (And I do in fact have a little bit of research work and study to keep me going just now).
  • I am feeling well. To date, the dreaded side effects of my follow-up treatment for cancer have been negligible. To date, I am still thin!

I know all my feelings may change. I may get more fearful of cancer coming back. Side effects may kick in and throw me off balance. I may not yet have finished with rage. I may start to feel useless. And please don’t you try and call me “lucky”, as someone did on a breast cancer forum in July. It’s a feeling that is only valid because it emerges from within.

But, for now, here I am in the middle way, but not so much in a dark wood just now. Less lost, than feeling that it is all right to take a break.  In a spiritual exercise that I have tried a few times, you ask yourself, “What time is it in my life?” (a bit like thinking of the Doomsday clock, but not necessarily as sinister) and see what time suggests itself. I asked myself this in May – between Career Crash and Cancer – and I think the same answer still holds now. It’s about half-past three. Maybe the end of the school day. Time for a cup of tea; time to pause. Still time left to do quite a lot. Haven’t decided what yet. That’s OK.

I’d like to refer you to another cancer blogger (I reblogged one of her posts a little while ago). You can read her blog at http://www.positive3neg.wordpress.com. I have not met her, though we have sent each other one or two messages (she is in Australia). She is, on the face of it, less “lucky” than me – she has “triple negative” breast cancer, which is often aggressive and difficult to treat. But I don’t know how she would describe herself. Her writing is fantastic, and suggests a wisdom and even a serenity that is enviable.  Strange as it may seem, we are both agreed that the cancer experience is not all bad.  

One right-wing American male changes his mind

This bloke (CS) had advertised a Facebook “event” for the 13th October. He entitled it “No Bra Day” (if Obama hasn’t shut this down too”). There’s a clue in there about his politics.

Here are our exchanges.
Me This is AWFUL. It is offensive to women like me who have had breast cancer. Please look at my blog http://www.olot1.wordpress.com and think about the message this idea is putting out.

The next day, I picked this up:
CS Dear ED , dont know who you are , but here is a news flash , EVERYONE is entitled to an opinion , i have several close friends who, like you have had breast cancer , they learned to deal with it and so have I , maybe its time you did the same , if you do not like this , simply block any further updates from this page , thank you


The next bit happened in real time:

Me Of course everyone is entitled to an opinion. I am expressing mine. It is less than two months since I lost a breast. I am dealing with it. But I do not expect ever to feel at ease with an event which focuses on women’s body parts rather than women as whole human beings.

CS as ive said , i feel compassion for those who have to go through this , never meant to offend anyone , sorry , wish ya luck in the future , cancer is never an easy illness to deal with

Me Thank you.

CS
You are very welcome , im about to do something ive never done before , I am going to remove this event .

Me Fantastic – I am so glad. And I am very,very impressed by your humility and ability to reflect and change your mind. That is not easy to do.

But CS did not get this last comment because he had already taken his event down by the time I had typed it. I am trying to contact him via Facebook to say thank you.

DO NOT “like” this awful, awful picture.

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This picture (doing the rounds on FB) is an example of the worst excesses of Breast Cancer Awareness Month. It made me feel sick. And there are a lot of upset women on the Breast Cancer charity forums who are as outraged as me.

Look at it. For a start it says, “Support Breast cancer”. What — not support breast cancer research, or breast cancer care, or even breast cancer “survivors” or “victims” (terms I hate)? Almost anything would be better than what it actually says.

Secondly, it shows a slim young woman waving a teensy little bra. For those of you who don’t know, the majority of women with breast cancer will be watching their weight/struggling with their body image. This is not helpful. Nor is the reminder that tiny little bras are not an option for most of us any more. If we wear one at all, it has to carry a prosthesis, or cover our scars.

Even worse, when I clicked on this picture in order to download it and put it up on my blog, I came across messages from men cheering on the women who are not going to wear a bra on the 13th, and reminding them not to forget to publish the photos. So is this about supporting women with breast cancer, or is this about soft porn?? Forgive the failure of my sense of humour. I am no prude. I enjoy rude jokes. But I see NOTHING funny about this. The message I’m getting here is that it’s breasts, not women, who matter. And if that is true, well, I’m stuffed.

And finally, the 13th is the day in Breast Cancer Awareness Month which has been dedicated to those with metastatic cancer – that’s those whose cancer has spread to other parts of the body – a life-limiting condition, not a laughing matter. Those of us who have had even a brush with this disease are holding our breaths and hoping that’s not where we end up. How sad and insensitive that on this particular day, this trivial message should be sent out to distract the unwitting and the thoughtless.

So – please do NOT circulate this picture. If you have already inadvertently and with the best of intention put it up on your FB page, please take it down. Perhaps say sorry. And take a look at the SCAR project instead, perhaps. And wear a bra, or not, as you like, on October 13th. Either way, it won’t help any woman with breast cancer, anywhere.

See What I Mean

Further to my posts about the new NHS breast screening invitation leaflet (“Good news for women” and “Consider 1000 women”), I attach the new leaflet which is now available on the screening programme website; and the old leaflet – the one I was sent in May – by way of comparison.

<a href=”https://olot1.wordpress.com/?attachment_id=952&#8243; rel=”attachment wp-att-952″>pre-2013 screening leaflet</a>

<a href=”https://olot1.wordpress.com/?attachment_id=951&#8243; rel=”attachment wp-att-951″>2013 screening leaflet</a>

What a contrast. I applaud the NHS for the new leaflet, which I think leaves women in no doubt that they must weigh up the pros and cons of going for screening. Some very misleading information has been revised: for example, compare this from the old: “If a breast cancer is found early, you are less likely to have a mastectomy (your breast removed)” – with this from the new: “Whether your cancer is invasive or non-invasive, you will be offered treatment and care from a team of breast cancer specialists. The treatment is likely to include surgery (which may mean a mastectomy), hormone therapy, radiotherapy and possibly chemotherapy as well. These treatments can cause serious, long-term side effects.” Note that the new leaflet acknowledges that the standard treatment even for non-invasive cancers may be very radical.

It will be fascinating to see what happens to the uptake of screening now. It will also be interesting how much pressure is still put on women to attend  A refusenik  (better informed than I was) tells me that, earlier this year,  when she didn’t attend, her GP invited her in for a discussion, which she declined as she doubted her ability to withstand the face-to-face pressure.

I know I am repeating myself. If you are bored, you can click the “close” button. But this blog is for me, and if I need to repeat myself, I will. If I am still banging on about this same issue in a year’s time, then do give me a nudge, as it will perhaps suggest that I am psychologically stuck. Particularly as I clearly don’t have to campaign on this one any more. However, for now, still under two months on from the the first time the word “mastectomy” was used in relation to my own case, I am just so sad that I was sent an old leaflet while the new one was actually in production. The screening programme sent me information they knew was biased and misleading, without a caveat in the covering letter. They sent it to thousands of other women too, in the period since the Independent Review reported last Autumn. I think that is seriously unethical. It landed me with an impossible dilemma – one which still haunts me.

October? Bah, humbug.

hat

Sometime in my forties, I started turning into an old fogey. One of the first signs of this was the attitude I found myself taking towards Hallowe’en. Or at least Hallowe’en as it is marked These Days as distinct from the Good Old. I do not have any problem with a bit of pumpkin-carving or apple-bobbing and the telling of some spooky stories. Nor is this an objection on the theological grounds that we shouldn’t dance with the devil or dabble in the dark arts. And I did try to do my bit for a couple of years, trailing round the streets at a discreet distance from small girls dressed in sheets, as they excitedly tried to extort sweets out of complete strangers. My objection comes principally from what I perceive as the over-commercialisation of a festival that would be better kept simple and home-spun. I think a certain amount of transatlantic drift has contributed to this overkill – it’s a much bigger deal that it used to be. Witness the nasty cheap plastic costumes in all the shops, the plethora of extruded potato snacks in ghost shapes, and the orange lollipops. And while as a Quaker I shouldn’t be setting great store by festivals, it also troubles me that children probably have little idea of the origins of Hallowe’en – little sense of the sacred which might make one want to pause and think about All Saints or All Souls. I know even my own daughters don’t “get” why Easter (to give another example) is, in my view, in a rather different league from Red Nose Day.*

But I digress – back to October. Now here’s another example of transatlantic drift – Breast Cancer Awareness Month.
This was started in about 1985 in the USA, to encourage women to check themselves and to go for screening. At the time, this may have been laudable. But two things have happened: firstly, the screening programmes both here and in the States are now arguably doing more harm than good (see my other posts). Secondly Breast Cancer Awareness Month has grown out of all proportion into a horrible, silly, pink month-long party, in which we are encouraged to buy things we don’t need and take part in daft competitions in the name of supporting women with breast cancer. And I bet most of those who contribute – with the best of intentions of course – think they are doing something politically correct (“let’s ensure women’s health is high on the agenda”), and are unaware of the origins of the Month, and of the controversies which surround screening.

I actually think that the influence of the breast cancer charities may be having a negative effect on women’s health. These charities are so powerful that, as Professor Michael Baum suggests, doing away with the screening programme is “politically unacceptable”. They all recommend that women go for routine screening – even now, after the publication of the new screening leaflet; though some express more caution than others. And it does honestly seem to me that the pinker the charity, the less critical it is. So it is very hard for medics and researchers to sit down and think carefully about screening from first principles in the light of current knowledge; and it is very hard for politicians to think about re-directing resources away from screening and into research and better, more targeted, individual, treatments – which is where I think the money should go. I also think it should go particularly into the care and support of those who are not the breast cancer “successes” we all like to think about. Apparently women who develop secondary breast cancers (still incurable) speak often of a sense of abandonment. According to the prevailing rhetoric, they’re the “failures” after all. Maybe they didn’t “fight” hard enough.

I am not a lone voice. I have discovered that lots of women who have had breast cancer hate Breast Cancer Awareness Month. Mercifully I am not aware that its worst excesses have reached the UK yet: in the States apparently it is in danger of becoming a festival of the boob. (“It’s all about the boobies” says the T shirt slogan). Because boobs are fun and sexy, and you don’t have to think too hard about real women and their needs and choices that way.

At my daughter’s school, where the sixth formers are still in uniform (!?), they are allowed to buy and wear a pink tie in October. My daughter won’t be wearing one. And if she’s asked why, she’ll have to explain. It’s because that Old Fogey, her mother, has had breast cancer.

*They say they do. Sorry, girls.