Tuesday 4 December 2012

'Being the subject of falls' by Bill Bytheway

This is a subjective account of two related experiences: having a fall and being interviewed about that fall.

In March (2012), out of the blue, I was approached by a friend-cum-gerontologist, asking me if I would be willing to join a focus group of older people to discuss falls: ‘The aim is to have a fairly informal talk with a small group of people, over 65 years old who have had a fall outdoors within the last year. We want to hear people’s experiences, views and ideas’. Apparently they were a little short of men.

Occasionally of course, older gerontologists reflect on the challenge of interpreting their own personal experiences of ‘being of an age’. Generally however, one has to pass a certain birthday such as your 65th, before being invited ‘out of the blue’ to be a representative ‘older person’. This was my first such experience and I agreed to take part, both through curiosity and with a sense of obligation to fellow researchers. Upon entering the designated room at the appointed hour, the other participants were waiting. It seemed probable (but I may be wrong) that they had been recruited through local groups of older people – Age Concern or whatever – and that I was the only one who had been contacted through other networks. They had what was for me the familiar ‘look’ of a group of ‘older people’ brought together to discuss age-related issues.

We each recounted our personal experience of having had a recent fall and the part that we thought age may have played in this. As I remember – several months later – all the other falls were ascribed to ‘classic’ later life circumstances and weaknesses. I offered an account of my accident (see below) as objectively as possible but probably I said it was the kind of fall I’ve been having all my life, thereby dissociating the experience from age. After some open discussion (which tended to veer off the topic of falls), the meeting closed. We were asked if we were willing to be interviewed at a later date and, if possible, taken to where the fall had occurred. I agreed. I came away from the group feeling somewhat distant from the other older people there. Whereas my fall had resulted from lifelong risky habits (see below), the others were ‘talking up’ the peculiar circumstances they had found themselves in, in their old age.

In October, I was asked if I was available to be interviewed. Come the hour, there were two researchers on my doorstep. I invited them in for a cup of tea. One, let’s call her Ann, the researcher employed on the project, was visiting Swansea for a couple of days. I’d guess she was about 30 years of age, perhaps a little less. The second, Sue, lived in Swansea and was perhaps 40 to 50. In June I had celebrated my 70th birthday and was somewhat sensitive to matters of age. Sue had been at the focus group in March, but not Ann. Perhaps I should point out that there was no reference in the exchanges that followed to the fact that I was a retired gerontologist.

With the tea drunk, Ann brought out a standard, thankfully brief, questionnaire. The questions were not particularly unusual and I don’t now remember any of them. I was a little relieved when the time came to visit the site of my fall. We got up, donned our coats and set off.

At this point, it seems sensible to describe the location of the accident and then what happened, before returning to the interview. I fell quite close to where I live in Swansea. There are two four-sided blocks of typically Welsh terraces between my home and the dentist’s. To get there I walk up a fairly steep road, crossing three roads that tend to follow the contours. To cross the third there is an old-fashioned Zebra crossing and, immediately in front, there is a long terrace. At the nearer end, there is our local health centre and at the other our dentist’s. The distance from home to dental surgery is about 300 yards. In many ways, where we live is an ideal setting for later life: easy access by foot or bus to most services, and a relatively pedestrian-friendly environment.

(cc) Draig

That day, for reasons I can’t remember, I only set off to the dentist’s around the time I was due to be there. As a result I set off up the hill in a hurry. I was rushing if not exactly running. I remember thinking I was making good progress and even that I was rather fitter than I thought I was.

Half way there, there is a momentary respite, since the road to cross provides a break in the climb up the hill. At the other side, however, the pavement is at its steepest. Moreover, there are channels built into it to enable rainwater to drain away from the adjacent front gardens, and a long strip of the pavement had been re-layed following the burying of internet cables. So at this point the pavement has a steep and uneven surface. Shortly after resuming my climb, my right foot caught on something and I fell forward. In re-telling the story I claim that, when going up hill, the pavement in front is nearer than it would be on the flat. And so, as I stumbled and my left hand went out, the pavement was closer to my head. Although my hand broke my fall, it did not prevent my forehead from hitting the pavement. I can remember seeing my hand going out and then finding myself sprawled on the ground. I think I was aware at that point that my forehead was bleeding and possibly I found and applied a paper tissue. It was at this moment however, that a tall young male student, coming down the hill, stopped to ask ‘Are you alright?’ The immediate reaction of course is to think what a stupid question that is, but of course it was kindly meant: he was offering to help, possibly to get me back on my feet. Feeling embarrassed and cross, I declined the offer, thanked him and started back up the hill again.

I had fifty yards or so in which to decide what to do next. I could feel a bump swelling and there was some bleeding to stem. My mind considered ‘popping’ in to the Health Centre to get the gash dressed. Then I realised that there was no chance this might be done quickly; perhaps I should return home. But I wanted to get to the dentist’s, didn’t feel too bad and so carried on. When I got there I was able to clean myself up a little and, when I was called, my dentist found an ice bag in his fridge. So I sat there, in the chair, holding this bag to my head, whilst he examined my teeth.

I have told the story a number of times since it has a comic charm, not least the image of me finally making it to the dentist’s chair. But it’s not unrelated to the question of age. Arguably the initial distraction which led to me rushing was age-related – failing to remember an appointment when busy doing other things. And then perhaps I would not have fallen so badly, if at all, had I been 30 or so years younger. And, faced with the young student, I may have felt humiliated as a result of my failings seemingly due to age.  

This then is the story of the fall which I was happy to re-tell. Ann and Sue were not the first to hear it and, as with all ‘good stories’, despite wanting to produce an accurate account, I may simplify or dramatise it in the re-telling. Ann asked me about possible changes in my behaviour. Did I now avoid walking up the hill?  Do I think a walking stick might reduce the risk of falling? And so on. When we reached the spot where it happened, I tried ‘forensically’ to identify the guilty obstacle on the pavement that had ‘caused’ me to fall, but this didn’t prompt any further questions. It was a fairly cold day and soon it seemed I had supplied them with sufficient information for their research.

Now, I ask myself were Ann and Sue operating within the ‘decline’ model of age? It’s widely recognised that falling in later life is a significant risk factor, and that a fall can precipitate many years of ill-health, poor mobility or social isolation. I wouldn’t dispute this. The aim of the research, according to the project’s information leaflet, was “to find out how older people’s quality of life might be improved by making outdoor environments easier to use and less likely to cause people to slip, trip, or fall”. Looking back now, it seems to me that their research was not aimed at finding out how that particular fall might have been prevented by, for example, improvements to the pavement. Rather it was how older people such as myself might avoid experiencing similar accidents in the future. To that end their questions were focused on my own possible failings and risky behaviours rather than the quality of the immediate environment in which I had fallen.

I like the idea of research being undertaken ‘in situ’ and so I’d been looking forward to re-living the experience of the fall. Disappointingly this had not happened but who know what the consequences might have been had I had the chance!

Bill Bytheway

Wednesday 7 November 2012

CABS members on be on BBC Radio 4's 'Thinking Allowed'

Look out for CABS members Julia Johnson and Sheena Rolph on BBC Radio 4's 'Thinking Allowed' programme on 21st November 2012. They will be talking about their award-winning work 'Revisiting the Last Refuge' on residential care homes for older people.

Friday 2 November 2012

Dying Well and the LCP

There has been a lot of discussion in the UK media in the last week or so about the Liverpool Care Pathway (LCP) approach to dealing well with the end of life in hospitals: a matter of great importance to older people and those who care for them. Inevitably perhaps there has been misunderstanding and misreporting, with the Minister of State calling a meeting to discuss worries about it - BBC News.

Age UK has very helpfully blogged this about the LCP and dying in hospital, pointing out that for older people coming to the end of their life 'poor experiences tend to arise because their healthcare team has not identified that they may die in the next hours or days; their care is not being planned appropriately; families are not provided with emotional, spiritual and practical support. Resolving these issues can even mean someone doesn’t need to be in hospital at all, allowing them to die at home which is frequently preferred'.

My feeling is that no protocols or procedures that deal with people, especially those at their most vulnerable, should be allowed to become routine to the point where they begin to loose their purpose and impact - and so it is good for us to be reminded from time to time why we do things as we do. But this issue is too important to be at the mercy of a mainstream media that often picks up a issue, throws it around a bit, and then moves on; or indeed of political imperatives to the seen to be acting even if in the absence of, or against, the best available evidence. I think that in an environment of widespread disruption to hospitals, their governance, funding and staffing, it is up to us all to be vigilant about attacks on initiatives like the LCP that aim to promote dignity in care. 

Friday 28 September 2012

Friend of CABS wins campaigning award

I delighted to be able to post on the CABS blog that Stephanie Warren (Chairperson of Senior Voice - who are supported by Age UK Milton Keynes) has won the Sheila McKechnie Foundation 'Take Action' award.

The Take Action award is for people aged 60 and over who campaign on issues important to them. Stephanie has been campaigning to have the cheque supported by a cheque guarantee card reinstated by the banks. You can read more about the award and watch Stephanie talking about her campaigning work here.

Stephanie has worked with members of CABS on the lifelong learning project OPT-in and given presentations about her involvement at a number of seminars and conferences. Most recently she joined me at the AEA conference in Stoke-on Trent where we gave a joint presentation about our work.

Friday 14 September 2012

The ups and downs of later life

This week I attended the annual conference of the Association for Education & Ageing (AEA) that was run in conjunction with the Beth Johnson Foundation. AEA are particularly interested in research, practice and policy related to life long learning.

 The morning keynote was given by Paul Kingstone (Staffordshire University) who spoke about education and mental health in later life. In his keynote Paul challenged the traditional images and explanations of the lifecourse and instead introduced us to the Socioemotive Selectivity Theory (SST). In introducing this theory he argued that in later life as people experience losses and declines in later life (the downs), the sense of that remaining life is finite motivates people to seek gains in emotional and social interactions and and relationship with others (the ups), that 'off set' the losses and declines experienced. In the context of the AEA conference this was of great interest as it helped us all think more carefully about why funding and support for lifelong learning can make an important contribution to quality of later life.

 Paul also challenged us to think about how we construct curriculums of education for people working in health and social care. He questioned the value of curriculums based on traditional theories of biology, psychology and sociology and argued instead that if workers are to know and value ageing, curriculums should draw on philosophy, spiritiuality, the arts, history and intergenerational learning. As a nurse and a university academic I found Paul's keynote very thought provoking as it highlighted how traditional ways of thinking about later life and ageing lead to being more focused on what is lost, not was is gained.

I was joined at the conference by Stephanie Warren from Senior Voice (who are supported by Age UK MIlton Keynes). We gave a joint presentation about our work on The Lifelong Learning Project OPT-in. The presentation was very well received.

 The highlight of the afternoon was the AGM of AEA where I am pleased to be able to report our own Dr Jonathan Hughes was elected as Chairperson.

 As we reflected on the ups and downs of ageing that had been shared through the day, one on the conference attendees, an older woman, said that we should not always think of the ups as good and the downs as bad. She commented that when she goes walking she looks forward to the point of the walk when the leader says 'Its down hill all the way now', and in life she was enjoying going down the hill.

 A very enjoyable and thought provoking conference which I hope some of you may attend next year.

Wednesday 29 August 2012

The Paralympic Games

I’m really pleased to see the blog about Jill Reynolds and the link to the heartfelt obituary in The Guardian.

I’m writing this blog a couple of week after the end of the Olympic Games in London and on the day that the Paralympic Games open.

The focus of the Olympics is very much on ‘youth’. Although the Opening ceremony looked back over British history, it culminated with the lighting of the very spectacular cauldron and with the torches, which had been bought in by ageing stars, being passed to the next (younger) generation. Indeed, the whole of the Olympic focuses on the youth of the world coming together to be ‘citius, altius , fortius’ (faster, higher, stronger). Added to this is the very idea of the Olympic ‘legacy’ strongly suggests something valuable being passed on to a younger generation.

Tied in with this overt focus on youth, is a sub-text of elite individualism in which gifted (young) individuals train for years on end to be the best.

However, the focus on elite youth overlooks the importance of social structures in which older people play important roles as coaches, officials and ‘gamesmakers’. The tendency to focus on the athletes who ‘medal’, while creating moments of undeniable drama, does mean that there is a real danger of overlooking and misreading what the ‘legacy’ of the London Olympics could be.

Politicians have been quick to jump on the feel good bandwagon of medal victories as a straw to grasp as the economy bumps along a very murky bottom.

But I think this misses the point. What surely more significant is the value of exercise in promoting and maintaining well-being throughout life. A study published in The Lancet to coincide with the build-up to the Olympics suggested that lack of exercise is now causing as many deaths as smoking across the world. The report, , estimates that about a third of adults are not doing enough physical activity, causing 5.3m deaths a year. That equates to about one in 10 deaths from diseases such as heart disease, diabetes and breast and colon cancer.

In 1978, Susan Sontag suggested that we are all ‘dual citizens’ of the land of the well and the land of the sick, ‘Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.’ Jill’s last illness, which she set out so candidly in her blogs, showed her becoming a citizen of the land of the sick.

However, wouldn’t it be great to have a legacy we could all share in? Such a legacy might be possible if there was wider recognition that it is only by creating social structures which enable more people to remain in the land of the well for as long as possible.

More of us (of all ages) would benefit from this than from the fetishisation of youth in which chronological age becomes a proxy for fitness and health. Well-being and the opportunity to engage in physical exercise should not be age-rationed but promoted as something that involves people at all stages of life. It might even mean that we would not have to comment on a 54 year old rider winning a gold medal.

It will be interesting to see how age plays out in the Paralympic Games.

Dr. Jonathan Hughes

Thursday 23 August 2012

On Friday 17th August, friends of Jill Reynolds gathered with her family for a memorial service at St Mary the Virgin church in Chipping Camden, Oxfordshire. Jill had died peacefully at her other home in France, with her husband Dave holding her hand, on July 26th. Jill's obituary in the Guardian is here.

As anyone who followed her blogs here and in other places will know, Jill was a very calm and thoughtful person who was unflinching in writing about her illness and impending death, but she was a pains to make it easier for those around her to talk about it, or not talk about it, as they needed to. As Jill described in one of her blogs below, she had managed to eat, drink and sing with people from all aspects of her life before her death, and she was very grateful for being able to do that. I felt that because of how she handled the time between diagnosis just a few months ago, and her death, we at the memorial service were able to think about a life well-lived and a woman well-loved with sadness about her passing but without regrets about things unsaid or undone. A good death. Goodbye Jill, and thanks for being among us.

Monday 13 August 2012

It's an age thing...

Long-time CABS member Bill Bytheway has written a guest blog for AgeUK about involving older people in research. Read it here: http://ageukblog.org.uk/2012/08/11/guest-blog-the-involvement-of-older-people-in-research-and-other-projects/

Thursday 19 July 2012

Cancer Treatment in France; pros and cons

Following ex OU academic Jill Reynolds' previous posts 'what if I die before I get old' husband Dave continues Jill's story of her experience of cancer treatment in France.
The news in March that chemo treatment had reduced the size of Jill's secondary cancers gave us confidence that with more treatment we could enjoy summer at our house in France and pop down to Spain so Jill could practise her spanish.  The last blog 'European Union at work' expressed our frustrating experience of health system bureaucracies, but in mid April she started chemo in Narbonne.  We did not expect things to change so quickly. The nagging pain in her left hip quickly got worse.  In early April we'd got our bikes out for short rides and done vineyard walks of an hour or so; two weeks later she was on crutches and moving a few paces with difficulty.  When we'd asked 'specialists', in Oxford or Narbonne, if this was likely to be cancer spreading to her bones, they all said 'probably not; pancreatic cancer spreading to bones is rare, only 5-10% of cases'.  We had it x-rayed and went to see a 'rhumatalogist' Dr Brousson, an earnest man with a reputation for brusqueness.  He eyed Jill and her x-ray with the look of a gas engineer inspecting an obsolete boiler, and said;
'Hole here.  Very thin here, perhaps fissure.  Risk of fracture.  Perhaps try cement.  You walked in here with aid of one crutch?  Always use two.  Do not walk back down the corridor; take a wheelchair.  Put no weight on legs.  Come to hospital tomorrow for scans and tests.'
Whenever you go to any healthcare service they always ask for your 'carte vitale' with social security number first.  Having to explain 'we're not resident here, don't have carte vitale, but do have an international exchange agreement, form S2, I know you haven't heard of it, here's our number' became a little tedious but once you've got the paperwork sorted they do move.  None of this 'A secretary will get back to you in a week or so with a date for some other time' - they pick up the phone, talk to the scan unit, and say 'tomorrow'.
The news from the scans was not good.  Jill was one of the 5-10% whose cancer had spread to bones - hip and back.  So as 'cement' was obviously not an option a 10 day course of radiotherapy, reputed to be a good treatment for bone cancers, was arranged.  The treatment clinic in Beziers was modern and full of high tech robot things that targeted several places at once.  Although the actual treatment only takes a few minutes, we had a daily 70 mile round trip by taxi/ambulance which dominated the day.
We were told it takes up to 4 weeks for radiotherapy to take effect, so Jill put her feet up and waited; nothing changed.  At least she could enjoy a small vin rouge in our sunny garden. Everyone told us what a washout the english summer was so we could almost feel smug.  After 3 weeks there was a follow up and when we asked if, given more time, benefits from radiotherapy might still appear, Dr Mathieu gave a very gallic shrug and spread of hands.
The frustrating thing about pancreatic cancer is that for all the specialisms and high tech kit nobody understands how this disease works and what might happen.  It's not that they're bad, or lazy, they just don't know and can't tell you much.
If Jill's mobility was unlikely to allow her to do much, we thought of returning to the UK where we were confident of the end of life care given by McMillan nurses and the local hospice. But a week or so later Jill lost the use of her legs and ability to stand, so travel would evidently be difficult.  She now has 'soins palliatif a la maison' where local nurses come in twice a day to wash, change dressings etc and they're marvellous.  She even has a physio visit daily to give her foot massage 'pour le circulation' while we watch Bradley Wiggins on tv puffing up the Pyrenees a couple of hours from here on 'le tour'.
So what are the differences, the pros and cons of having treatment in France or staying in the UK?  As one might expect, they're both western european countries with similar educational traditions so the solutions will be similar.  In France there's a lot of 'up front' bureaucracy partly due to the network of public and private providers.  They react quicker; waiting times are much less or non existent, which is important when dealing with 'aggressive' cancers.  They spend about 20% more per person on healthcare -  a significant difference but not a massive one.  You can see plenty of opportunities for cost savings! In the UK the slowness that seems endemic in the admin is difficult to understand and so stressful. The support systems - both NHS and personal - are more intimate.  In the end all roads lead to the same place; some are quicker or more comfortable than others.

Tuesday 17 July 2012

New President-Elect for the British Society of Gerontology

The British Society of Gerontology conference this year was a particularly good one for the Centre for Ageing and Biographical Studies because, in addition to the news about Bill Bytheway, we also heard that another long-standing member, Professor Sheila Peace, has been elected as the future president of the British Society of Gerontology. Sheila takes up office in 2014 but for the next two years has the role of President-Elect on the BSG committee.

Professor Sheila Peace

CABS congratulates her on this honour and wishes her every success in the role.

Wednesday 11 July 2012

Congratulations to Bill Bytheway

Several CABS members are at the 41st annual conference of the British Society of Gerontology at the University of Keele today. We were delighted to learn that long-standing CABS member, Bill Bytheway, has been awarded the British Society of Gerontology's Outstanding Achievement Award.

Introducing the award, Professor Alan Walker said that this is the highest award the BSG can give. It is made annually to an individual or organiation that has made a significant and lasting contribution to British gerontology. This impact must be not only in the field of research but also in policy and in improving the quality of life of older people. He reported that the panel of judges had been unanimous this year and the audience certainly sounded as if they highly approved their choice.

Alan Walker mentioned Bill's many publications, especially his books Ageism and Unmasking Age, his involvement in teaching, especially at the OU, and his many research projects particularly the Research on Age Discrimination (RoAD) project. He also reminded us that Bill was a founder member of the BSG, has been Secretary and Treasurer and was for many year's Editor of the society's journal Ageing and Society.

Bill himself spoke briefly and reminded us that ageing is a property of all of us, not just of people we put in the category of 'older person'.

Congratulations to Bill on such a prestigious and well-deserved award.

Wednesday 4 July 2012

The european union at work; getting healthcare in France

Following my previous three posts (What if I die before I get old?) my husband Dave now takes up the story of our struggle with health system bureaucracies.

At then end of 3 months of chemo the lumps (secondaries) in Jill's stomach had gone down, so we had two choices -
- whether to have another 3 months chemo
- if so, whether to have it in England or France
Difficult decision; commit to staying in the damp drizzle of a cotswold spring or the sun and vin rouge of the Languedoc.
So after her March celebration in Chippy we phoned the medecine generale (Gp) in Bizanet and asked how we'd get chemo treatment there.
'Simple; just come and see me, I refer you to a specialist, he'll see you in a couple of days, off you go'.  'Pardon; a couple of days - you mean a couple of weeks, surely?'  'Mais non'.
I'd looked at the NHS website which confirmed all EU citizens (that's us) can choose to obtain their healthcare in any EU country, talked about 'possible' reimbursement and directing us to to the CPAM (social security) office in france.  It didn't look too difficult.
The local Dr Azemar referred us speedily to the Narbonne polyclinique which delivered chemo.  They assured us that cancer treatment was paid for '100%' by the state provided you had a social security number.  So down the CPAM office we go - 'your main residence is England but you have a house here - you have proof of ownership? then we can give you a social number'.  Easy; we bring that back next day with passport and other id.  'Ah, now you need an S2'  'What?'  'le S deux!'
Nobody mentioned that.  I ring the international health team in Newcastle and after spending a couple of half hours listening to music someone finally answers. 'Yes, every EU citizen has the right to access healthcare where ever they are.  If it's an emergency use the EHIC card; if it's an existing illness (like cancer) you need an S2'  'We'll have one of those please'  'But you're already in France?  Oh no. Very strict procedure for S2.  Your UK consultant has to agree the treatment you would have had here, write to your local health commissioner who writes back to us, and if we agree we send it to your UK address.'  'Can't you send it to us in France; that's where we are.'  'Of course not; you're registered with the NHS in UK'.
We call our friendly Chippy GP, who seems uncertain who the local health commissioner is in our brave new super choice world, but she finds out who to call a lot quicker than I did and the S2 gets emailed to us in just a week.
When we return to CPAM the woman whose office we huffed out of last time calls a rugby player look alike who doesn't like our assertion that we've been asked for different things each time we visit, that the french ss 'marche bien' and you mess with bureaucracy at your peril.  He ticks off every bit of paper, we think we're there, and he says 'you have a bank account in France?'  'mais oui' says I.  'In your name? not your wife's? the treatment is for your wife, so there must be an account in her name into which we can pay reimbursements.'  'Can't you just use mine?'  'Monsieur! You think we have a revolution for liberty, equality, fraternity so you english types can come here and trouser your wife's money off our state?'  This was of course conveyed not in words but a minute, yet distinct, raising of the right eyebrow.  'Right.  We'll go and open a bank account then.'
By now we're a little anxious because we've booked chemo to start and would really like everything in place.  Into the Credit Agricole branch where I opened my account in 10 minutes a few years back 'Banks much more careful now - crisis, you know.  You must have a rendezvous to open an account and bring all these bits of paper'  'Ok, but it's urgent'  'How about a week next Friday'  'No, URGENT urgent'  'Ah.  Monday morning then'.  So after a pleasant half hour with Gael; 'I like England - work as barman in Birmingham' we finally become signed up recipients to the french health system - and I have to say, once you've got the paperwork, the medical lot do things quickly and efficiently - but that's another story  .   .

Tuesday 15 May 2012

Celebrating life to date

This is the third in a series of posts from ex-OU academic Dr Jill Reynolds on living with a shortened life expectancy. See How do I tell friends I have cancer? for the previous post and What if I die before I get old? for the first in the series.

What the statistics couldn't tell me was how long I actually have, or what the quality of my life will be at different points on this cancer journey. I wanted to have some kind of party, and while it might be nice to put off the timing of this, I might not actually be up to it if I left it too late. So I fixed on a date towards the end of March as giving space for me to get the three cycles of chemo over with, and time enough to let people know it was on. We planned to go and live in France for our next step, and enjoy more health-giving sunshine.

From the Folk Club I belong to, some years ago a number of us attended a kind of wake or celebration of the life of one of the members who died suddenly. It was a very warm and vibrant occasion, people gave tributes, spoke of memories, sang or played their instruments in honour of Bill. I thought at the time how much I would like something similar and what a pity it would seem not to be able to enjoy it in one's lifetime. So I planned a celebration of my own, that I hoped I would be able to attend. An old friend told me she thought people taking part might find this quite hard. Everyone else I spoke to reacted very positively, some pointing out that the most important consideration should be that I enjoy it.

Not all my close friends were able to attend, and all the contact with people spurred on sub-sets of get-togethers both before and after this event. These were all great occasions too, and some people used their inability to take part in the main celebration to deliver an accolade on what knowing me had meant to them; I tried to respond in kind. You know how each Christmas you get dozens of cards from people wishing the best for the new year and saying 'let's make it next year that we see each other'? I used to read these, and think, 'well, if I were to spend a week-end with each of them that would be 60 weekends committed'. In contrast, this year I must have seen hundreds of the people who mean a lot to me; while that's not everyone, it feels like a great achievement.

The celebration went wonderfully. People came long distances in order to join in, from Scotland, Yorkshire, Norfolk and from all parts of my life, people with whom I shared different enthusiasms and interests.
Family, school friends, those I was close to at
university, members of my cycling groups, folk club
musicians and singers - a whole entourage of fabulous people. I will attach some video extracts here and more can be found on YouTube.

One friend, disappointed not to be able to be there in person, wrote a poem in my honour (look to your laurels Miss Joan Hunter Dunn!) and coached a mutual friend who was planning on coming in how it should be delivered. Edith Piaf was conjured up in 'Je ne regrette rien', the King Stone Rappers invaded with their sword sticks and did a rapper dance in the remarkably small space available, and a whole panoply of drunken intellectuals was invoked in 'The Philosophers' Song'. Exceptionally talented individuals from our folk club and elsewhere played and sang all sorts of terrific music, some penned by themselves.

People's competitive streaks became apparent as they focused on finding the answers to Quiz questions all about myself - and had to talk to those who had known me at different periods in my life.
The answer to 'In how many different countries has Jill visited the A & E department' (usually after falling off bicycle) turned into something of a movable feast as those present remembered places I'd now forgotten!
We sang and chatted for four hours - some people had to leave before they had a chance to perform and I was disappointed to learn that my brother had come ready to present 'The Cobbler's Song' (a favourite of our father's) but didn't get to do it.

It was a truly fabulous celebration for myself and Dave. Did some friends find it hard and was it like a wake where I was able to be present? I'm not sure - one friend explained later that she and her partner had left early because she was in a state where she could not stop crying. Another who I hadn't seen since learning that I have cancer needed to express how upset she was to hear it, and seemed unable to leave the subject alone. I became aware of the coded middle class ways we have of dealing with these sensitive matters. Are there conventions about how much it is OK to say and when? Often it's just a matter of a hug, a pat, a squeeze or a look that conveys that the other knows it's not business as usual.

So there wasn't a series of speeches about precisely how wonderful I was ... and that's probably no bad thing. We passed round a guest book in which people could write comments and there were some delightful ones. I also got a lot of cards, now installed in the same book. Dave's favourite had a picture of a glamorous 1920s woman in furs and JILL inserted in front of the words on the card: 'Queen of friggin' everything'!

Wednesday 9 May 2012

Alright, I admit it I was supposed to do two posts before the end of April but I think I can get away with doing this (in early May).

My last blog talked about the AEA conference in Ireland and I mentioned that it can be difficult to fit in my interest in later life learning with ‘the day job’. So it’s good to be able to report that since then I have been to two event that were (apparently) totally unrelated to older people but where I met different people who both shared this interest.

The first meeting took place at a meeting of a project developing ‘Learning Champions’ to encourage people to use OpenLearn resources to move from informal to informal learning. The meeting took place at Bangor University but the person I met worked with older learners at Communities First in Holyhead. The second meeting occurred at Staffordshire University where I had gone to attend a HEA event on inclusive assessment. The person organising it was a recently completed PhD student who thesis was about the role of art in later life.
It’s good to know that people are out there with these interests. I passed a copy of the regular digest produced by AEA to the first person I met and encouraged the Staffordshire colleague to join AEA.
(I’m trying to resist the temptation to encourage readers of this blog to do the same!)
Reading The Guardian on 11 April 2012 I came across this short article by Stewart Dakers: 'As an older person, I've had it good - and the young know it'. I think its conclusion is quite sad and I’m not sure that it’s warranted. But it does raise the issue of the importance of inter-generational connections in order that people see each other as primarily as individuals rather than as representing a different group or, in this case, generation.

Jonathan Hughes 04/05/12

Monday 30 April 2012

How do I tell friends I have cancer?

This is the second in a series of posts from ex-OU academic Dr Jill Reynolds on living with a shortened life expectancy. See http://centreforageingandbiography.blogspot.fr/2012/03/what-if-i-die-before-i-get-old.html  for the first post.

Learning in mid-December that I have pancreatic cancer faced me with a number of problems, not least of which was how to let people know, and how much to tell them at this point. Dave, my husband, was with me of course when the phone went at 8.45 am to tell me I should see the oncology consultant today, at a time I had been expecting to see the lymphoma specialist who had been so confident that my symptoms were due to lymphoma, a highly treatable condition.

I was preparing already to send people e-Christmas cards, having wanted to wait until I had a diagnosis and some information about my condition. But I didn't at that point know anything about pancreatic cancer, and it was not until after my diagnosis appointment that I began to grasp the point that what I had was not at all a treatable condition, and that the best I could hope for some diminution of pain from symptoms as a result of 'palliative' chemotherapy, and perhaps an extra couple of months of life.

Some of my close friends and my brother were aware of my ongoing medical investigations and they rang that evening to find out what I'd heard. While it wasn't easy telling them, they were mostly prepared for some kind of important news and responded accordingly, so that felt OK. I just knew that I couldn't speak to anyone who had no idea I was unwell. I emailed a few further friends who were aware I had health worries. Dave and I decided to go to our house in France for Christmas: it seemed that my chemotherapy sessions would not start till the end of December and it might be hard for us to take time away from the UK once sessions were in full swing of one chemo blast per week and a consultative session in the 4th week.
Using the 'death threat' to get her company

Magically, two of my close women friends agreed to come with us for this week away. One had already paid regular visits with us; the other hadn't managed to find time yet to join us in France, and with black humour suggested that I had used an extreme ploy to ensure her company. People talked about the need to get away from everyday life, and I was not sure what might be different about being away from home, the ghastly diagnosis wouldn't change, but somehow it's true, it was different.

I still wanted to contact people I would normally be in touch with at this time of year. Email was a wonderful way to be able to do this. It gave the recipient the opportunity to take in the information while giving them time to respond. The European Commission calls for action to make e-technology more accessible for older people http://ec.europa.eu/information_society/activities/einclusion/policy/ageing/index_en.htm, and this sort of global communication seems a very important item for that agenda. People have their own connections with someone who has had cancer, and as we heard back some sad stories, we wondered whether there was an epidemic of cancer that meant everyone knew far more people who had it? One correspondent suggested that no, it may not have risen but now we are all much better informed about the states of health of our peers just because of the possibilities of instant and widespread communication.

Everyone responded in a way that was far more mature than I have ever managed at such times. In the past I've tended to block out such upsetting information, in some way distancing myself from the person concerned, saying to myself: 'I don't really know them that well, they will be getting a huge number of responses from people closer than me.' When my father died, aged 64 at a time when I was only 19 years old, while terribly upset, I comforted myself with the idea that since I was away at university, it was not like living at home and would not change my everyday life hugely. I was to learn over the years how wrong I was on this.

So I'm in no position to make judgements criticising the quality of people's responses. Any response, even 'I don't know what to say' in some way shares the emotion and the pain. There were some surprises, and some long delays on the part of those I had expected to hear from. I later learnt, at least from some of these, that they had felt so angry at the news, the unfairness of it all, that they had just had to 'go for a long walk on the beach' as one respondent put it.

I did try phoning one person, whose email I couldn't find, and this confirmed to me that face to face or telephone is not the best modes for me. What happens is that the other person is shocked and upset to hear my news, and this resonates between us. I get upset at the thought that they are so upset and the distress increases. With one or two friends who don't use email, I asked a mutual friend if they could pass on the information. In one case, my choice was rather insensitive: the person I asked to help was my target's ex-boyfriend from school and university days. I had presumed that they have maintained contact over time, but I later heard from the friend that she had been quite shocked to hear the voice, no longer recognisable to her, of someone she hadn't spoken to for years.

A very joyous and informal event
Deciding what to say to colleagues from work was difficult. At the Open University we work in quite small teams on different research or teaching projects. As I'd been off sick for some time, people had shifted around to cover the gap, and I therefore wasn't in that regular contact with anyone. I thought that rather than send a global email to all in the faculty, some of whom might hardly know me, I would select out everyone who I remembered working with closely in recent years. Of course I was bound to forget some important people that way. One ex-colleague and friend wondered how the faculty would cope with a farewell event - as she said 'They usually handle these things really well, but I'm not sure how they'll manage in these sad circumstances.' She offered to arrange a pub lunch so that anyone I wanted there could say goodbye. In the event, practically everyone I'd identified, colleagues and ex-colleagues, over 20 people all turned up, and it was a very joyous and informal event. I still worried about those who'd got left off my wish list, in case they felt ignored or rejected - but let's hope they understand.

Thanks for your comments. I look forward to hearing some more.

Jill Reynolds