The Word We Fear Most of All


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.



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?

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 —

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.