In his pomp

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 (and this is the post I set out to write).

We met to honour the memory of T, but the occasion provided a pretext for the gathering of the class of ’85, aka the congregation of that era, which consisted of both local Londoners and young professionals who lived in the area for varying lengths of time. We all knew T when he was around the age we have now reached. You might say he was then in his pomp (a sporting expression I have only just learned from my husband). So for a few hours on Saturday, I and my cohort of other 50-somethings experienced a time warp. Many of us had not been back to the church much in the intervening thirty years, and even if we had, the gradual scattering of the class of ’85 would have meant that we would not have found many of our contemporaries there. Only a few stayed in this this part of south east London. They (and we of the diaspora) gathered in a place we all knew, where we all used to meet as young adults, and looked at each other as we are now, but also looked for the people we used to know.

Most of us, I think, appeared remarkably unchanged: on the whole a little broader, a little greyer, but instantly recognisable. But this belied the varied and various life journeys we have all been on in the interim: the career highs and lows, the children born and raised, the relationships forged, sustained and broken, the losses faced, the worlds explored, the risks taken, the homes and communities created. An image of an uneven arc came to my mind: at one end, there was that point (around 1985) when all our lives coincided.  Then our trajectories fanned out and followed different courses (with occasional re-crossing of paths for some of us). Until Saturday, when for a very brief moment, our paths all crossed at a single point again.

There was something very poignant about it. I was thrilled to see people again – even those whom I had hardly thought about for years. Equally there was something very frustrating about it: there were so many people to greet (though how delightful it was to do so), that I could hear and repeat only the headlines with each person. We never got to the leading article, or the analysis.

Whilst I don’t want to go back to that time, I felt wistful.  I learned again the meaning of “nostalgia”: a strange sad/happy feeling and sense of confusion as the past and the present met. The setting and the people seemed so familiar, and yet now so other. I recalled the intensity of that time from the relative calmness of middle age. I can’t believe that chapter of my life lasted only nine years.

Back in 2015 (where, in the space of a week, both our girls are heading off to different universities, and so we start another chapter), I showed my family the order of service (see my previous post). My daughter (the one who hasn’t quite gone yet) observed that a certain sort of picture appears on the front of such publications: a smiling portrait of T in his (or her) pomp (though to be honest, I think I knew the priest and pastor we remembered on Saturday just after his most energetic and creative years. But the expression in his pomp has a pleasing Cockney resonance which is somehow very fitting).

Pause for thought then: if we, the class of ’85, knew him after his pomp, where are we on our own life trajectories now? Have we done our best work?  What can we make of the next thirty years?

And have the cover portraits for our memorial or funeral services already been taken?

Saving Lives?

— So the Breast Care Unit has clearly not forgotten me, and I am due back for a monitoring appointment next week. I am happy to go, as I want to discuss my medication, but I will again be declining a mammogram which will give me no useful information. Any mammogram is only a snapshot which tells you if there is/isn’t a small lump on the day of the x-ray. It could be different next month. So it’s false reassurance if your result is clear, and quite possibly unnecessary anxiety (and tests, and diagnosis, and treatment) if it isn’t.

To my horror and wry amusement, I have also just been invited for a routine mammogram! I’m pretty sure the NHS has my number, and the computers should have computed –. However, the “invitation” (invidious word) has given me the opportunity to fire off a salvo to the local Clinical Director, which I reproduce here, in part:

Dear Dr L

NHS Breast Screening
I have today received a letter inviting me to a routine breast screening appointment. I have turned it down for the following reasons:
1) I last had a routine mammogram exactly 20 months ago, when I lived only 10 miles away from my present address, but in North Yorkshire. Therefore this invitation is very premature.

2) That mammogram found asymptomatic cancer in my right breast, and as a consequence I had a mastectomy in August 2013. I am still being monitored by the Breast Care Unit, so this invitation to routine mammography is at best inappropriate, and at worst, insensitive and distressing.

I recognise that my invitation is almost certainly due to an administrative error. However, I would have declined it whenever it came, because, following my experience of Summer 2013, I have decided never to have another routine mammogram. At that time, I unwittingly – and without being able to give adequately informed consent – was caught up in a process of testing, diagnosis and treatment, the consequences of which will stay with me for the rest of my life. I only learned after diagnosis, from extensive research and reading, that mammograms are best at picking up the cancers that are least likely to be life-threatening. I will never know if I really needed my surgery. That is hard to live with.

The current breast screening information leaflet, which came out just after my diagnosis, is certainly an improvement on the version I received. Yet my accompanying letter still states that breast screening “saves lives”. This assertion is based on very scant evidence. Screening is far more likely to turn a woman into a cancer patient unnecessarily than to save her life. Making such a claim in the opening sentence of the letter gives it an unwarranted prominence. I would like to see the letter revised to omit this statement.

I would like to ask you to make another change your offer of screening. While it is couched as an “offer”, it in fact feels more like a summons, because a specific appointment has already been made. By way of comparison, women have to contact their GP’s surgery for themselves in order to take up the offer of cervical screening. This is in my view a far less coercive approach, and one which I would urge you to consider if you truly want women to make a considered choice about the offer of screening.

Today, I also received a link to an article which yet again throws doubt on the value of screening programmes. The link is here:
If you don’t want to read it all (and it is a challenge), here are the main conclusions:

Among currently available screening tests for diseases where death is a common outcome, reductions in disease-specific mortality are uncommon and reductions in all-cause mortality are very rare or non-existent. In other words, it is misleading to tell women that screening save lives.

There are a now a number of articles floating around in cyberspace about “Misfearing Breast Cancer” – just Google it. I tend to agree with these. When you get a breast cancer diagnosis, all the well-meaning websites and support networks tell you that you will be devastated. You are encouraged to be afraid, though also told that most breast cancers are treatable these days. I think we should be less afraid. We’re not so afraid of diabetes, it seems to me – another potentially serious but manageable condition. If we’re going to be afraid, what should we women in our fifties (and beyond) be afraid of? The answer, apparently (and sorry I can’t find a reference just now) is heart disease, which will kill far more of us than breast cancer ever will; and, especially in our final years, muscular-skeletal problems (this one is according to Atul Gawande’s book, “Being Mortal”).

I am under no illusion that I am anything but mortal. It won’t save my life – I won’t live for ever – but in an attempt to look after my heart and my bones, today I joined a gym, but chose not to misfear breast cancer.

Intimations of Mortality

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.