Six weeks

Today it is six weeks since my mastectomy (“mastectomy”: such an ugly word that I find myself hesitating to use it). Six weeks feels like a significant landmark: I am now supposed to be recovered from surgery. The “take it easy” injunction no longer applies.The ban on vacuuming and ironing is lifted (don’t tell the daughters). And I can crash the car now and be 100% sure that the insurers would stump up. Don’t worry, I was complying with their advice and that of the surgeon exactly when I got behind the wheel 2 weeks ago; but I just suspect that, being an insurance company, they might have wriggled a bit if I had tried to make a claim then.

So, at six weeks, how am I doing? Time for a bit of self-congratulation, I think. I am fit and well. I am moving on to my advanced physiotherapy exercises (they are still boring, though). Some days my scar site is more uncomfortable than others, but mostly it’s OK. And I’m being very good. I am walking briskly for about 40 minutes six days out of seven. I am eating really healthily –  low red meat, low dairy, low sugar, lots of fruit and veg. My chocolate intake is limited to occasional squares of very dark chocolate (the Co-op’s Fair Trade with Cranberries is the best). And B and I are trying the 5:2 diet – together, for moral support. So on 2 days in a week I keep my calorie intake down to about 500. This is not too bad – it means two pieces of fruit for breakfast, a salad with a sardine for lunch, and some fat-free but quite chunky soup for tea. If this attempt at weight control seems a bit early or possibly unnecessary, may I suggest that I have caught the habit of early and possibly unnecessary action off the medics.

At six weeks, I have gone back into a school for the first time since early July, interviewing children for the research project I am helping on, and have had a short meeting at the uni about a second research project. In the last few days I have clerked a Quaker business meeting, and had a meeting with our accountant. So not a hectic schedule exactly, but pleasantly busy.

At six weeks,I have just started the hormone therapy, and have taken two doses of Anastrozole (= Arimidex) with no discernible effect so far. 2 doses down and only 1,818 to go –. Next week I have an appointment for the first Zoladex injection. Could be a bit more of a challenge.

At six weeks, those are the facts. Mostly I’m cheerful. Those not in the know do not seem to detect any change. But I was reliving the run-up to the mastectomy today, and I just don’t know how I got through that. And I was remembering how, after the surgery, I dared to look at my chest, and first of all felt relieved because the dressing was neat and it all looked clean and tidy (the bruising came later). But it was flat, very flat. Still now, when I put my hand up to my front, I expect to find a right breast in the space where it isn’t.

At six weeks, my breast shows no signs of growing back. It’s gone.

Advertisements

The Friends That Stay Away

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.

Positive3negative

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…

View original post 1,592 more words

Raid On The Inarticulate

In my last year at university, I wrote a long essay on T. S. Eliot’s “Four Quartets” (I may still have it in a box in the garage somewhere). I don’t know why I chose the topic. I think I would have found TSE a deeply unattractive character, and I still have only a tenuous grasp on his poetry. Eliot was an American by birth, but I think he really wanted to be English and European. As his religion, he chose Anglo-Catholicism, which gave him the chance to hook up both with English history/culture and that of the wider Catholic European tradition. He desperately wanted roots. So the poems are shot through with literary and cultural references, some deliberately obscure. In a way they’re an exercise in intellectual snobbery. Maybe that’s why I chose them to study: I admit there’s more than a bit of intellectual snobbery in me (deeply unattractive, I’d say, and it hasn’t escaped my notice that this post might be a bit of showing-off too. But what the hell).

You might ask what has brought poor old TSE into my mind to be slated like this. Whilst I still find the “Four Quartets” opaque in some ways, Eliot’s themes really resonate with me. He is preoccupied with the difficulty of words and word meanings. How language is fluid, and how hard it is to “fix” a meaning. For me there are two recent triggers for some thought about this. We went at the weekend to another wedding (weddings are like buses, etc.) – this time of a young couple – son of university friends of mine and his fiancee. Lovely, happy occasion – attractive and talented young people clearly utterly committed to the idea of a life together – and both of them (as is the wider family at least on the groom’s side, and probably on the bride’s too) – Bible-believing Christians. Even the presiding minister commented on the fact that the couple had insisted on three Bible readings, not the customary two. Moreover, the readings they chose were those which, in evangelical circles are interpreted to support a very, very traditional view of gender roles in marriage. It’s a view that I have to acknowledge seems to work very well for many of those who sign up to it; but I myself have some problems with the words, handed down through the centuries, which now seem so at odds with contemporary ideas about equality and self-determination. And I wonder what the true cost is to the woman in the partnership in particular.

By way of comparison, the national body of Quakers is currently asking itself if it’s time to revise a book called “Quaker Faith and Practice”. This book is an anthology of Quaker thought, with contributions by a range of authors, from the well-known to the obscure, grouped by themes. It’s also a handbook about how to run Quaker business etc., but that’s not the bit that I’m talking about here. It gets revised (a slow and careful business, involving wide consultation) about once every generation, in order to ensure that as far as possible it continues to reflect the concerns and commitments of Quakers in Britain. So it’s not static – it changes. Quakers love their time-honoured phrases as much as the next group, but some of these may get dropped from the next edition, and new material may be included.

So – what value do we place on old words? Do they stand for all time? Are their meanings not tied to the time/culture in which they were written? Should we be re-interpreting, re-formulating, or not? Should we use words – as best we can – to articulate our experience, or should we start with the words first and use them to frame our lives or even guide us?

The overarching theme of the “Four Quartets” is that of time, and how we are both in it and somehow need to transcend it. (There’s also sub-theme about counter-factual thinking – about all the roads not taken which somehow exist in parallel in our consciousness. This is particularly relevant to me at the moment in relation the One Lump Or Two experience.) I felt as if I was in a time-warp at the wedding. We were in the city and among people whom I knew thirty years ago. It is always a bittersweet experience going back to Cambridge, which on the whole looks so very much the same. Quite a lot is probably invested in keeping it so. I think about happy times now past, but also about all the opportunities I missed (and am glad that our student daughter, in her turn, seems better equipped to seize some of these than I was). I still expect to see friends cycling around on their way to lectures. But the reality is that here they are now, middle-aged like me, and witnessing the marriage of their own recently-graduated children. So somehow the past meets the present, and it makes me think about how our lives – so closely and intensely linked in student years – have diverged. And how some of us have moved on and changed; and yet for some, the old familiar words still seem to mean the same as they always did. I am left with a confused sense of loss and nostalgia.

But I would never go back. I don’t look like an adventurous person. I have never had the travel bug, and my nearest and dearest know how physically risk-averse I am. But, even while I don’t quite know what he means, I am with Eliot here:

We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.

And that’s the final thing I want to say about TSE’s poem sequence: in it he wrestles to articulate the paradoxes I think we need learn to embrace (something I have written about in some of my earlier posts). The strange truth, for example, that the more you learn, the more you are aware of your ignorance; or that you have to “let go” (= make yourself vulnerable) in order to live. Like Eliot, the struggle for articulation sometimes take me back to traditional religious imagery with a new appreciation, even while the gods seem alien to me now.

I wanted to include many more quotations from the “Four Quartets” to illustrate my comments. But I found so many compelling, memorable phrases and images that I couldn’t choose. I take it all back, TSE. You wrote some wonderful poetry. And here is a link to the whole sequence, for those who care to look: http://www.davidgorman.com/4Quartets/index.htm

Image

Consider 1000 women —

I dashed off yesterday’s post in haste. Here is part two.

Please look at this excerpt from the Guardian article of 16th September (I posted a link to it yesterday):

While breast cancer charities welcomed the move, Mia Rosenblatt, head of policy and campaigns at Breast Cancer Campaign, said it was important that women “are presented with the key facts about screening”. But, she added: “However this brings with it the potential that some women will be concerned as a result of this new focus on over diagnosis. This may have an impact on screening attendance.” Screening take-up should now be monitored for any potential fall and all women should attend appointments, she added.

Why? Why, Mia Rosenblatt, should all women attend their appointments for routine breast screening? Should they not think hard first about whether it is worth the risk of overdiagnosis? Or, put another way, should they not think hard about the risk of a lethal cancer being missed if they don’t go for screening?

What’s missing here is readily available support for women to take this difficult decision. However – more good news! – decision aids are being developed. This is what Professor Michael Baum advocated, and Professor Alexandra Barrett from Sydney has been working on for years (see my earlier post, “Anyone Out There”?”). Without much trouble, I have found a document on Google about it. The link to it is given below, and the pretty picture above is taken from it (sorry it is not clearer). The document is said to be for professionals to use with women who are trying to decide whether to take up their screening offer.

But – did I miss something? I wasn’t invited in to use this aid with my GP, or a specially trained nurse. The staff doing the mammogram didn’t go through it with me before they squeezed me into the machine. Is this document – dated 2009 – being used? Or has it been suppressed by pressure groups such as the Breast Cancer Campaign, for reasons that I, for one, can’t fathom?

Let me just reiterate the statistics: over a 10 year period of screening, of the 30 women out of 1000 who get a diagnosis of cancer:

3 will have their lives saved (so screening makes all the difference to them);

5 will die from aggressive cancers anyway, despite having been screened (so screening ultimately makes no difference, though they may start treatment earlier);

22 will get a diagnosis of cancer but will not die (so screening ultimately makes no difference, though they may start treatment earlier). And of these 22, 4 do not actually need the treatment, but are likely to get it anyway. And as to the claim (on that cursed old leaflet, now consigned to the bin, I hope) that this group of women may get away with less radical and extensive treatment because the cancers are caught earlier, let me just remind you that muggins here ended up with a mastectomy. Feels radical to me.

I leave you to figure it out – each of you on your own – until such time as impartial support for decision-making is widely publicised and available to all.

And, Mia Rosenblatt, would such support not be worth campaigning for?

http://www.npc.nhs.uk/therapeutics/other/breast_cancer/resources/pda_breast_cancer.pdf

Lull

Yes, the pace of posts has slackened. I may be experiencing the calm before the hormonal storm (watch this space); however for the last few days I have been less in my head, and more just living, which has felt less surreal and more normal. I have started driving again, have had a piano lesson, and am turning my attention to both the research project and to Quaker business – as well as to co-housing matters. So it’s almost “as we were”, but with a slightly more health-conscious twist (I won’t go on at length about either my pedometer readings or my attempts to make low-fat, low-dairy cake).

It would be nice to think that things would now settle down and the whole breast cancer experience would be relegated to a filing cabinet somewhere well to the back of my consciousness. “The Psychological Impact of Breast Cancer” by Cordelia Galgut (CG), which I read last week, suggests that this is not likely to be the case; and even that the fear of recurrence becomes more pronounced as the years pass. And it is true that I am myself currently convinced that it is only a matter of time before They come for my other breast; and I just do not know how to begin to handle further invitations for mammograms. But – back to the book – I did not think it was consistently good, and found its perspective quite limited. The beginning is terrific: CG very ably dissects the historical and cultural attitudes both to breast and to cancer which give the term “breast cancer” such particular potency. This was brought home to me again when I heard two days ago that my sister’s sister-in-law (not known to me directly) is apparently “in a terrible state” and revising her will on getting a screen-detected diagnosis of breast cancer. We all (medics included) respond with atavistic fear to a word which used to denote rampant invasive disease and certain death but which does not always do so any more. We need more words.

The rest of the book, however, is an account of the CG’s own difficult experience, and her reflections on what helped her psychologically, and what didn’t. I had been hoping for a slightly less particular and more general and analytical approach, which would help me set my own experience into context. Maybe CG is right, and that experiences of breast cancer do not fit any psychological “map” (she maintains that the received wisdom about stages of grief is not a good fit for her). But I would have thought that looking at the research on trauma and loss might be illuminating. In what ways is losing a breast different/the same as the experience of the amputation of a limb or suffering a disfigurement, for example? What about shock and decision-making? What about medics as authority figures, and the imbalance of power in doctor-patient relationships? And, of course, there is no discussion of the psychological confusion resulting from finding out a bit too late about the questionable value of screening, early diagnosis and treatment. But then, as I have yet to find any one else who has recently faced this predicament, I wasn’t really expecting that.

But the book did make me feel grateful for my experience with the NHS so far (setting the screening programme aside for the time being, that is!!). CG was treated privately. The private clinic may have been less plastic and dog-eared than the one I go to, and I bet the waiting times were shorter; but she met with a lack of communication, tact, empathy, and sometimes with sheer callousness. Whereas the actual care I have received has been kind and responsive (if just a little patronising), and, I think, of high quality – witness my good recovery from anaesthesia, my minimal need for pain relief – and the neatness of my scar. So CG’s recommendations for quality of care (and she only published in 2010) seem to me to be a bit redundant. At least in the NHS where I am.

What’s more, the cost of the hormone injections I have so reluctantly signed up for (and this is not counting the accompanying pills) is as eye-watering as the jabs themselves are likely to be. At £400 a pop, they’d better be doing me some good. So thanks again to the NHS – stressed and creaking it may be, but it’s still free and available to all at the point of delivery. Let’s make sure we keep it.

That Sledgehammer Feeling

One of my sisters, R, lent me Rose Tremain’s “Merivel”  as recuperative reading. (I love Rose Tremain, and have read “Restoration” three or four times – one of the very best of contemporary novels). I don’t know if R had remembered that there is a breast cancer episode in the book, when Merivel (who is a surgeon) cuts out a cancer that has clearly spread to the lymph nodes and beyond. This being the C17, there is no other treatment, and, unsurprisingly, the woman dies. It set me thinking: was the psychological impact of bc actually much less in the days before the whole modern medical machine? Would it in some ways  be preferable to know far less, and to be able to do far less about it? Would your mind get less messed up that way?

For me, this is almost all about the psychology just now. You see, in one way, I’m relatively accepting. I’m not hiding my asymmetric look away. I’m determined to get back to a new normal. But I still wonder every day, “How did this happen? All this palaver and treatment for two tiny, tiny bits of rogue tissue? Is this not out of all proportion?” And I think all the time about the decisions I have made and am making; the treatment I have had; the irreversible change to my body; the fear of the effect of future treatments; how I will deal with future invitations to screening and monitoring; the possibility of recurrence; and the inconsistency of my actions ( = rage, protest, question, make a big fuss – and then ultimately agree to surgery and hormone therapy. What’s going on here??)

I still don’t see myself as up against cancer per se. Maybe I am in deep denial and unable to accept that my body actually went wrong. There are people posting on the bc discussion sites who clearly feel relieved to have had a lump cut out/breast removed, and say unequivocally that they would have the other breast removed without hesitation if another cancer was found there. They are glad to have all the aggressive treatments that are offered – anything to keep the cancer itself  at bay.  I just am not like that.  Despite the kindness and care of individuals, I still see myself as up against some cancer bandwagon – with its confusing and conflicting messages – even while I am agreeing to accept its help.

So, the current state of play? I have had breast cancer, but haven’t got it any more.  But now I’ve got cancer in the head. Big time. It has spread. It has got me. Maybe it will be with me forever.

Step We Gaily

So, dear readers, I am happy to report that I did nearly everything on my Friday to-do list. I waited in vain for the rain to stop before I ventured out for a walk, and then went anyway, but let myself off the gardening, and did 3 items of ironing with my left hand instead (this means reversing everything – board, garment – quite a spatial challenge).

Yesterday, after a meeting at LCH (Lancaster CoHousing) at which we were voted Best Dressed Couple, we went to the wedding of an old friend and her new partner. There were some good Celtic hymn tunes to enjoy, and a new resonance to the wedding vows (sickness/health, better/worse) for B and me. Shakespeare’s sonnet 116 was also read — “Love is not love/ Which alters when it alteration finds”, etc. This made me slightly weepy. B asked me if I wanted to renew our wedding vows, to which I actually emphatically said “No” – for 2 reasons. 1) Words are superfluous when you are actually trying to do it; 2) I couldn’t do the wedding service thing again – it would have to be more Quaker-style. Fortunately B agrees with me on both counts, so we didn’t fall out in the churchyard about it.

After the drinks, the meal and the chat, during which we successfully parried a couple of innocent questions of the “How was your summer” variety, there was a celebratory ceilidh. I had thought beforehand that this might be too much of a contact sport for me at present, though I did take my dancing shoes. To my surprise, I easily managed a waltz with B (safe enough as he knows which side not to yank). In as far as the two of us can manage any waltz, that is. I also did a couple of other dances with no problem, reassured by the fact that the floor was so crowded that there wasn’t space for any over-enthusiastic spinning. This is one kind of exercise I actually like and feel competent about (except for waltzing).

My wedding outfit drew a couple of compliments. It’s far too lovely a dress (Phase Eight, silk/velvet, cost me £12!) to contemplate sending back to the charity shop, so I wore it back to front for a more discreet neckline. I think Lady Di once set a precedent in reversing dresses. Lady Di, Angelina Jolie – wow, what a lot I have in common with the glitterati these days.

After a very late start today, I am going to:

do piano practice
do all exercises as usual
go for a walk
process some of the apple harvest (with back-up team: still can’t do heavy chopping)
have in-laws round for tea (back-up team again on duty)
little bit of domestic stuff (maybe bathrooms)
do a bit of joint parenting! (support for decision-making on A level choices, final year dissertation topics –)

But it’s very good to find that I can summon up the energy for a Grand Day Out.

Getting a Grip (maybe)

S2 phoned today. I felt honoured (whoops, my reluctant respect for her status is showing). She asked (among other things) if I had considered counselling from CancerCare. I said that I was aware of the option and would bear it in mind, but that I felt I had a lot of good support. I have had mostly good experiences of counselling/spiritual direction at times in the past, so I’m not at all averse to it in principle, nor to the suggestion that I might need it. But I fear there are some counsellors who might fall foul of my overactive bullshit detector —

Of course now I’m wondering if S2’s question was a standard one, or whether she actually does think I am more screwed up than most.

I also had a phone conversation with my bc nurse. I suppose it is her job to be reassuring about hormone treatment. And she did quite well. So why have I taken a tentative decision to go for the treatment?

– because of what Prof Michael Baum says about the risks of surgery (possibly upsets delicate equilibrium thereby facilitating growth of dormant cancers). If this is true, I probably need to get those high oestrogen levels down.
– because I can always stop if it is too bad.
– because it might not be too bad. It sounds as if the Zoladex is worse than the Arimidex (I am almost inevitably in for a load of hot flushes I think), but the bc nurse said that weight gain – or at least huge weight gain – is not as common as on Tamoxifen. So here’s hoping. I am concerned about the risks to bone density, but would be monitored carefully for that. Of course, the big recommendation here is exercise. What a pity I hate exercise. Got to try to do it. Have ordered a pedometer as a motivation tool.
– because I don’t want to be left alone with all this. This is odd (and a bad reason for going for it). I have a real push-me-pull-you attitude towards the medics. I wish they had never bothered me, but now I’m here —

Oh dear, I think I’m in danger of getting boring. I feel boring, sitting at home with not much get up and go, and everyone else whizzing back to their important September lives. As is my habit, I make a small list of small things to do for each day, but I’m not getting through them. S2 says I should expect to feel tired for a while yet, and the hormone therapy is likely also to take energy out of me, so I should probably give myself some breaks. However, I think I feel better if I can say I have used at least some of my time well (must be the protestant work ethic). So, everybody, I am going to be accountable to the Blog. Here’s a list of things I will try to do tomorrow:

3 sets of physio exercises (I have been pretty good about these, but they are boring).
Pelvic floor exercises (because menopausal symptoms coming soon with a bang)
Piano practice (always good for me in many ways when I get down to it)
Get letters sorted for research project, including MGS
Go for a walk (say, 20 minutes)
Do one lot of laundry
If not wet, do some light gardening, e.g. a bit more cutting back
Cook tea (with back-up team in necessary).
Read my book (Rose Tremain’s “Merivel”) for a sustained period of time.

I’ll let you know how I go. I won’t be rewarding myself with chocolate, so “likes” for a completed list appreciated!