Not the post I set out to write

This is a honed version of the post I put up yesterday, and then took down.

I went to a memorial service in London on Saturday. The person whose life was celebrated was the erstwhile vicar of the church I attended in the 1980s, and that’s where the service was held. The order of service was prefaced by a short poem by Joyce Grenfell, which I have always loved. Good, I thought. The programme also suggested the possibility of spontaneous contributions and silent reflection. Good again, I thought, having attended a few Quaker memorial meetings, where time for reflection and spontaneous contribution is all there is. Barry and I have both agreed that when the time comes, we want funerals of this kind for ourselves and each other. They are extraordinarily moving and healing, in our experience.

I very much enjoyed belting out some classic hymns, listening to some more well-chosen poetry and some beautiful music, and to anecdotes about the dear departed.  I am very glad I went. It was a joyful and thankful occasion, a fit tribute to a life fully lived, and to a priest and pastor who was a significant influence on my early adulthood. But I found it so busy. As it turned out, on Saturday, there was so much planned in the order of play that there was barely time for impromptu offerings; and if there was time for silent reflection, it was so brief that I missed it. To be fair, the dear departed was a larger-than-life and multi-faceted character: there was a lot to be said. And it was, several times over, for more than an hour and a half.

At the Quaker memorial meetings I have attended, despite quite lengthy silences, there has still been time for honest, heartfelt, poignant and sometimes funny contributions in an unhurried atmosphere. And all within an hour. Is this what has been called, “the amazing fact of Quaker worship”? The difference is that the words arise out of the silence. The silence is where we start from, and is not an optional extra which gets cut if we are running out of time. Even if (as happens at memorial meetings) not all those who speak are familiar with Quaker ways, the meeting is somehow held by the collective presence and practised discipline of those who regularly sit for an hour on a Sunday: an hour in which words (if they come) are both wrapped in silence and tempered by it. It is only rarely that I feel someone has spoken for too long in Meeting, even when I don’t feel the “ministry” speaks to me.

This is not the post I thought I was going to write. I have surprised myself. I may even have surprised myself into going to Meeting more regularly —

Pink Stinks

My blog doesn’t get many hits most of the time any more. So normally I’m delighted when my viewing rates show a spike. There’s been a bit more unsolicited interest in the last few days, and from further afield than usual, and I wondered why for just a little while. And then I realised that of course it’s October again – so-called Breast Cancer Awareness Month, and that the hits I’m getting on my blog are nearly all on my post (written a year ago now) about the senselessness and insensitivity of No Bra Day.

I don’t feel it all as acutely as last year, but it’s a bit crap, isn’t it? I mean, I’m very glad if someone gets the message that NBD is a bad idea because of what I wrote. But I’m not glad that, whatever else I write about – rivers, memory, poems, music, ageing, cancer, overdiagnosis, getting better – it’s the post about the bras and the boobs that gets the hits.

So, if you’re visiting here because of that post, here’s a challenge. Up your game, and instead of doing something stupid and pointless in the name of Breast Cancer Awareness, read something serious.

Here are a couple of blogs on WordPress which will help. Try Positive3negative, or Evenstarsexplode. Or you could even read more right here. It might raise your awareness.

Fan Mail

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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.

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?

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.  

“The Power of Vulnerability”

I was trawling for TED talks on the pluses and minuses of modern medicine (and I may yet come back to this), when I was hooked by one by Brene Brown. Because I have recently got interested in qualitative research, and have long been interested in the power of story-telling, her description of herself as a “researcher-storyteller” would have reeled me in anyway. But there is more.

http://www.ted.com/playlists/77/new_to_ted.html (scroll to Talk 7).

It is about 20 minutes long – so if you are going to watch it, get yourself a cup of coffee first. I found myself thinking “Yes, I agree, I agree” so many times.

Her main point is that in order to feel connected (“Connection is why we’re here”), we have to have a sense of worthiness; and that sense is founded on courage (= whole-heartedness – the “willingness to tell the story of who you are with your whole heart”) and compassion towards oneself first, and then others. And that those who have a sense of their own worth have understood that vulnerability is necessary, because we have to make ourselves vulnerable in order to connect. Only that’s difficult, because we also have a drive to control, order, predict. If this doesn’t make much sense, she puts it much better than me, so watch the talk —

Brene doesn’t mention the God word once. But I feel she makes so many connections with the spiritual truths taught by so many traditions, though I myself can only really refer with any great experience to Christianity. Think of those exhortations about denying yourself and taking up your cross; about losing your life in order to save it. I have in the past thought of these texts as potentially quite dangerous – particularly for some women who may be culturally and historically conditioned to put themselves second, or even last. But maybe they are trying to say something about this paradox (here we go again) – that in order to live richly, you have to risk the loss that might come with laying yourself bare.

I’d like to think that that’s what the Blogging is about. I have been aware for a long time of my desire to be “real”. I hate to suspect myself of hypocrisy, and squirm when others point out my inconsistencies. But isn’t it hard really to be authentic? And as for the Blog, I know that by doing it I am both presenting quite a carefully crafted persona to the world, and am trying to say it how it really is – possibly at the risk of losing some friends who may disagree strongly with me, or whom I may offend. Perhaps the breast cancer experience has, so far at least, given me a bit of courage to try to tell my story wholeheartedly. But then again, maybe it’s just given me an excuse to indulge myself a bit.

Back to self-denial: B sometimes reminds me not to be a “Burnt Toast” mother. This phrase entered our household vocabulary several years ago following a TV interview we saw with the actor who plays the ditzy accident-prone Desperate Housewife (yes, we do watch some rubbish). Wiser than her on-screen character, the actor used it to denote the kind of woman with an overdeveloped sense of martyrdom who always has the smallest slice of cake, or forgoes it so that there is enough for everyone else, or eats up the wrinkly apple languishing at the bottom of the fridge.

Not a whiff of Burnt Toast for me at the moment. Maybe I’ll keep it that way.

Blog nuts and bolts and a bit more, part 2

I have come across some research which found that blogging is psychologically helpful to women undergoing bc treatment, so, having felt a bit hesitant about being so “out there”(because nice girls don’t do attention-seeking, do they??) I am now feeling quite justified in doing it as part of my recovery plan. And I can already see how addictive blogging could become — so here is a request. If you do comment, could you avoid using identifying names and locations, except for my first name? If I decide to go more public, I would like to protect the girls’ identities, and I will be able to trawl back through the first few posts and just change one or two details that might identify.

Am mildly radioactive tonight following pre-op injection and scan. Surgery tomorrow, hopefully only in hospital overnight. Won’t be taking laptop, so back here I hope in 2-3 days – maybe typing with my left hand.