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 8.45am 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 eChristmas 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 okay. 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 fourth week.
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.
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.
30 April 2012
This article was originally published on Platform, the online home for OU students, staff and alumni. It offered a blend of sparky comment, sharp insight and news relating to the student experience and ran between December 2008 and February 2014. You can still read the full archive online.