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  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, 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

Friday, 27 April 2012

At the last CABS meeting, I agreed to post two blogs during April 2012. You can see by the fact that today’s date is 27th April that I have left it rather late. In fact I’ll probably be leaving it even later as I have realised that I’m not actually sure how to post to the CABS blog and have had to ask for guidance.
Apart from my own indolence there are, I think a couple of reasons why I have not got round to posting before now. The first is that I have been busy doing other things that seem to have had more pressing deadlines than the CABS blog. The second is that I have been undecided what to talk about.

                                                               The Chapel at Maynooth

My original intention had been to say something about the AEA conference that I attended in Maynooth (just outside Dublin) in March. This conference was organised by the Association for Education and Ageing (AEA) in partnership with Age Action Ireland, WEA (Northern Ireland) and New Dynamics of Ageing.  I presented a version of a paper Josie Tetley has developed about the OPT-In project. The conference took place at the National University of Ireland Maynooth (NUIM) which began life as a seminary. Its claim to fame is that over the years it has trained 11000 Catholic priests, more than anywhere else in the world. Although it is now established mainly as a secular university the fact that our meetings were overlooked by portraits of severe-looking clerics gave a definite sense of place to the conference.  And the fact that I presented the OPT-In paper in a room called ‘Divinity 1’ is something that I’ll remember.
The conference was interesting with some fascinating papers about later life learning, particularly in Europe. It is noticeable that there is a greater level of interest in learning in later life in Europe than in the UK (especially England) where learning seems firmly focused on the skills agenda. Older learners have been particularly affected by the decimation of unaccredited adult learning in England.
AEA is concerned to try and establish the importance of learning through the life course. It looks likely that I will become the chair of AEA later this year. I am particularly keen to broaden the connections with what goes on in Europe. I am also concerned to establish connections in the UK with researchers whose interest in older people has implications for learning and with health and welfare practitioners whose practice has similar implications. I think these connections have the scope to broaden and deepen the role of learning in later life. There are all sorts of things that we need to learn about as we age and in order to make sense of our ageing and I hope that AEA will play a part in developing this awareness among researchers, practitioners and older people.
Jonathan Hughes