[CANCER] A Space for Sharing, play by @DeadEarnest for @Space4Sharing

[CANCER] A Space for Sharing, play by @DeadEarnest for @Space4Sharing

On Friday I went to watch ‘A Space for Sharing‘, a play by Dead Earnest, resulting from research undertaken by the research project ‘A Shared Space & A Space for Sharing‘.

Made it for the play on social media/breast cancer. #spaceforsharing

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The play was really well-put together, drawing upon generalised dialogue from the Breast Cancer Care forum – and I recognised pretty much every conversation that was had (and recognised the regular side effects). The actresses (and yes, it was an all-female cast) turned their chairs to face the audience when they were ‘online’, and turned them to face the wall behind if they were offline. They read out what they were writing aloud as we watched the interaction/dialogue. Each of the five actresses had (I think) one opportunity to speak directly to the audience – explaining some of the things they were/weren’t saying online – including one actress sat on the end for 3/4 of the play who ‘lurked’ in every other conversation. One member was pregnant throughout treatment, and we watched one member die (and take a seat off the stage), before they came back together to address the audience. There was a lot about building up the trust to share – making forums a safe space to share – and a clear benefit offered by the 3am chats, and also the question of when do people need to take a break from the group.

At the end of the play, there was around half-hour for Q&A and commentary. The first comments were from ladies with secondaries, who said that the script was spot on for ladies with primary cancer – but not for those with secondaries. Another comment questioned why no male actors (as men can get breast cancer too). The response seemed to be that because it is based upon online conversations in the main areas – it reflects the conversation there. Ladies with secondaries tend to disappear into a separate forum and the conversation changes, whilst the men seemed to not develop that kind of dynamic in the first place. There was then conversation about how much those of us who had been through treatment felt the benefit of these kind of groups, if we’d like more recommendations of groups on diagnosis, how we found any groups that we’re in (YBCN through page, and UK BCS&S via a friend, were the first 2 I joined)- and with the Chief Nurse for Macmillan – Karen Roberts – saying that she supported what she had seen on stage. I had a chat with her afterwards and appreciate the efforts that Macmillan are making to look at the use of digital (they employed a ‘digital nurse’ last year, that I’d read about, and are planning to expand that to overnight availability, plus some other projects), and hurrah that she thinks that online is ‘not so very different’ – so my sense that online social media cancer forums are great for support, but the drawback is that you’re closer to hearing about recurrence/death – had always been the case with offline support groups (but there was less 24/7 support). People need to feel unafraid to share relapses, although it may scare others in the group … we discussed the need to face our mortality (we all only die once) – including the projects ‘Art of Dying Well‘ and ‘Dying Matters‘.

It seems that every time that this play is done, it changes somewhat based upon the feedback from the Q&A, and upon the most recent research. Peter Bath indicated that when they say forums, they mean social media also.

The play, billed largely as about those who had supported each other on social media – and two of them meeting face-to-face – was echoed by my experience that evening, as I met up with a friend who was diagnosed around the same time as me, and we had connected via Twitter (after being Twitter friends with her husband for a long time over faith-tech) – and so I went with Rachel, and stayed with them overnight! Excellent evening…

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drbexl

Life Explorer, HE/learning, Senior Lecturer in Digital Marketing (Manchester Metropolitan University),  Christian, cultural history, WW2 posters: Keep Calm & Carry On, digital world, coach, ENFP, @digitalfprint, @ww2poster #digitalparenting

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