K260 Death and Dying

Following ex-OU academic Jill Reynolds' previous three posts on 'what if I die before I get old' her husband Dave now takes up the story of their struggle with health system bureaucracies...

At then end of three months of chemo the lumps (secondaries) in Jill's stomach had gone down, so we had two choices: whether to have another three months' chemo; and 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 we went. "Banks much more careful now - crisis, you know. You must have a rendezvous to open an account and bring all these bits of paper." "Okay, 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. 

• You can read Jill's first, second and third post here.

 

This is the third in a series of posts from ex-OU academic Dr Jill Reynolds on living with a shortened life expectancy. You can read the first and second post here.

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. Below is one of the video extracts 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'. The exceptionally talented members of 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' but didn't get to do it.

It was a truly fabulous celebration for Dave and myself. 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 okay 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'!

 

In the first of a series of posts on living with a shortened life expectancy, retired OU lecturer Jill Reynolds writes from the heart, and of her own experiences...

I was given the diagnosis of pancreatic cancer a few months ago, and was shocked to learn that the average life expectancy from time of diagnosis is six months.  Some people I’ve known quote Pete Townshend’s ‘Hope I die before I get old’ as a theme close to their hearts.

Well, that was never my attitude. My grandmother lived to 96 years and my mother to 86, so it seemed I had every chance of trying to surpass one or both of them to a higher total. It’s been suggested by University of Michigan researchers Heather Lacey and Peter Ubel that perhaps Pete Townshend wrote these classic lyrics in My Generation because he had a common misconception about old age. He didn’t realise that research shows older people are often happier in their old age than when young; even those who are chronically ill are often just as happy as those who are healthy.

I’ve just been reading Joan Barfoot’s 2008 novel Exit Lines and was drawn along by the plot which features a set of people brought together by their entry into a local care home: the Idyll Inn. Ruth has osteoarthritis and her body is quite twisted:  someone apparently not so happy in old age, perhaps ensuing pain is what has led her to decide that she will take her own life? A further possibility is that Ruth never had any children: does this mean that since her husband’s death she has no feelings for anyone left who needs her?  She looks to her three new companions in care to give her help with her planned exit. They are alarmed and puzzled as to why she is so determined to end it all: they were getting on so well, did she pick them out at first encounter as people who would fall in with her challenging request?

It seems Ruth is not depressed, and doesn’t hate her life but has an overall sense of discouragement about the world. In contrast, I was more than willing to explore the paths and possibilities of old age and take things as they come. My hopes of exploration suddenly cut off:  ‘I’m only 63, that hardly even counts as being old!’ Apparently my imagined visit to the future to learn from the Jill aged 80+ What do we know about being old and childless: an interview with my future self  was just that – imagination?
So many questions: how do I tell my friends? Who are my friends? How much do they want to know? How do I feel now about my long-held ambitions for retirement – travelling to South America, improving my Spanish and getting an OU degree in modern language studies? What about the loss of plans now unlikely to be achieved? Are there any positives – what are the things that I now don’t have to do? Can I take each day as a gift and extract maximum pleasure from it?

'So I’d like to go on record here as saying that at times of need, caring and love received, whether from friends or partner, are of incredible value'

Luckily I don’t have to deal with all these questions alone. People talk about ‘journeys’: a friend writes ‘I hope this one can have some good aspects. It is a journey for us too’. I think she means that friends are sharing my journey with me, whether willingly or unwillingly, almost like Ruth’s poor companions who were compelled to engage with her death plans.  As well as giving me their support, they are dealing with their own sense of loss and grief. She also of course may have in mind that none of us really know for sure when we are going to die and we all have to face this happening at some time, whether or not we get some advance warning.

In particular my husband Dave has been a solid support and wonderful friend: he acts as PA dealing with my medical appointments and tests; researches information about nutrition and other health-promoting actions; makes fantastic vegetable and fruit juices and ‘build-up’ drinks; fights my battles in sorting out pension details; cries and laughs with me and gives me love and affection.

My writing on singleness and childlessness does not view them as states to be pitied – beyond the range of what is ‘normal’ – but as states that are often outside our ability to change, and needing to become part of our more general understanding of possibilities for life as a whole (see The Single Woman: a Discursive Investigation, Jill Reynolds published by Routledge.)

None of my writings should be taken as critical of marriage or partnership as such, simply of the privileging of such long-term relationships as the ‘normal’ and therefore ‘to be expected’ pathway that lives should take. So I’d like to go on record here as saying that at times of need, caring and love received, whether from friends or partner, are of incredible value.

This is the first in what I hope will be a series of blogs on living with a shortened life expectancy, in which I’ll aim to address some of my questions above. I'm not the only person facing this likelihood, and I hope that if you have a similar experience, or know someone who does, you will post a comment here – your companionship will be welcome to me.

Jill Reynolds
2 April 2012
 

Picture caption: At times of need, caring and love received is of great value

• You can read Jill's second post - 'how do I tell friends I have cancer?' - here.