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Media & Press Media - Audio

[MEDIA] Talking Shortform Text with @PetrieHosken on @BBCRadioLondon

It was a loooooong journey back from Suffolk yesterday, so I was still asleep when my phone rang at 9.15am (I’d missed the earlier text as my phone doesn’t give any notifications between 11pm and 9am), from BBC London, asking if I could respond to the story that David Attenborough says he doesn’t understand textspeak (or emojis).

You can hear the interview here:

You can listen to the full programme here – I’m on just after the news at 9,30am.

TIL, if you’re wondering, is ‘Today I learned’…, and if we’d specifically got to emojis, I might have talked about how wartime posters are evidence of a visual shorthand language that we’ve learnt, and that emojis are a new form of this.

I also referred to the Urban Dictionary.

A few notes on my Facebook (for FB friends only).

Oh, and if you want to see how elegantly I was turned out:

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Digital Event

[EVENT] What can social media tell us about society? by @NatCen at @TwitterUK #ESRCFestival

Social media data is of great value to researchers. What people say on platforms such as Twitter can tell us a great deal about society’s attitudes. It can also allow us to capture reactions to political events in the moment. However, since the Cambridge Analytica scandal – which involved data from millions of Facebook users being mined and used for political ads to sway the 2016 US presidential election – people are more sceptical of how their data is used.

For the last two years the National Centre for Social Research (NatCen) has hosted an event at Twitter UK as part of the Festival of Social Science, run by the Economic and Social Research Council (ESRC).

This year the event will focus on how social media data can be used in research that benefits society, as well as what ethical considerations there are in this field. It will also look at how things have changed since last year in this incredibly fast-moving and topical field. Eventbrite

I’m featured on the @NatCen ‘Twitter Moment’

And my collected tweets (37) are here:

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Digital Event

[EVENT] New Perspectives in the Digital Society @DigiCultureKCL

The blending of offline and online interaction has had many talk about a “digital society” within which human and nonhuman actors coexist, and social media become batttlefields for culture wars. The contours of this “digital society”, however, are still to be questioned. In this workshop we will discuss some of the most interesting, cutting-edge research on the emergent “digital society”. How do we interpret key events and issues concerning the “digital society”? What are the key critical aspects that pertain to its emergence? What are the new frontiers of explorations to research societal issues in the digital era? Eventbrite

With no signal within the room, and my devices refusing to connect to eduroam, here are my notes from my iPad:

Drawn from across depts but the Centre is based in humanities. ECR workshop led by Alessandro Gandini

  • What are main features of society in which digital technologies exist?
  • Not just standard topics of social media and social relations

Kate Devlin @drkatedevlin

New book – Turned On: Science, Sex and Robots

  • Daily Mirror article – 24 Sep 18. Background AI, etc – met philosophers. How get computers to respond to environment in a way that’s intelligent. Some try and solve by replicating the way we think – but we don’t know enough about human cognition to replicate a machine yet. Sex = fundamental driver for humans – it’s how we all got here. What are we doing to foster intimacy in a society media tells us is getting more and more isolated.
  • DM headline – so far off the mark, robots about to take over immediately, etc. Creating the perfect human goes back to ‘the Gods’/Greeks inc Pandora (box). Maria from Metropolis = femme fatale. Pygmalion – retelling from Ovid, brought her to life with a kiss. Troy – took a bronze statue of husband to bed and ‘interacted with it’.
  • Lots of films today – future where tech provides us with a partner, inc Bladerunner 2049 (upgrade to ‘real’ – becomes Stepford wife & sex nymph), and Her (disembodied system .. falls in love with Operating System) – creepy = plausible. People talking to bots online without realising. Ashley Madison .. data breach – not enough women using site so used bots instead. Do we do deceptively or with awareness.
  • Can go online and get chatting, without ever having met, feel have got intense feelings… Confide in them? Eliza – interacting as a psychotherapist because questions such as ‘why do you feel that’ etc.
  • Ex Machina – to erase the line between (hu)man and machine … the woman is a threat to male authority = common trope. Obscure line between men/gods …. Turing test = appearance of intelligence only. Script – why gendered … easier for us to relate to? Classical AI – sex = reproduction? Or needs to be embodied to experience life? Can’t be more embodied than when having sex.
  • Funding bid from 3 years ago…
  • Jan 2017 – Express Headlines from conference sex robots… fears about sex toy hacks, etc – think about fears – legal and ethical implications. Standard AI worry – what happens to us if we can’t control the robots we’ve built?
  • See Roxy, Harmony, Samantha … (different levels of body\AI)
  • All objectionable stereotypes of women etc? As a piece of art/tech they are incredible, as representations of women = terrible. Product been made by men, for men, niche audience (sex dolls) – not a major worldwide thing. Reflects the state of the tech industry. Better ways of creating intimacy?
  • 2 types = see as substitute for women, or fetishise the doll because it’s a doll. Think about sex toys = around for millennia, sex dolls = newer. Moved away from basically genetalia, to more complex…
  • Slide = sex toys… making more accessible versions had an impact. App = huge issues about consent, etc. Ran a sex toy hackathon – range of different expertise … not just those on the ‘human’ scale, eg vibrator in tune to baseline of music, etc, sexual cryptocurrency (stroke purse to get money)… 2nd event moved away from sex to intimacy (alone or with others). Squeeze a fake breast, and something that looks a bit like an octopus toy, sensors attached to vagina – when got damp – peacocks tail opens up, shawl with sensors,
  • Hear a lot about how tech is isolating us, disagrees … fostering connections all around the world, are questions about ‘putting phone down’ – no choice anyway, all the things we need are online… so of course screen time is going to go up.
  • Sir Fappington … personal companion robot who is also a vacuum cleaner. There is a big problem with loneliness, but with not enough carers, more place for robots… probably won’t fall in love with them, not replacing human human relationships, but with something new.
  • Can machines feel pain? What do we build? Signals for care, etc? What about elderly people – as carers or sex? AI = don’t deceive… so wary re dementia? People sexually active TIL 80s but care homes = taboo & way set up with open rooms etc but lots of interest from care homes. Can’t lift/carry = too fragile, so exoskeleton for carers.
  • Asimov’s law of robotics? Those who own sex dolls, treat with huge amount of respect. Are some women but they don’t tend to talk about it. Men take on holiday as a group – they know it’s not a real thing… questions of addictions … will always be outliers…
  • Black Mirror Be Right Back … policies in the US not to build a likeness of someone – California for 70 years post death. Question of whether it disrupts the grieving process, how helpful is it, even Facebook memorialisation.
  • Dating apps . focus groups/interviews to explore… the number of people who use it to NOT engage. Engage online but don’t go on dates… dating is burdensome/ an effort. KD did a panel with a psychotherapist … wants someone to meet ‘real people’ – question is why, if they are happy (and some have partner + doll – so much judgement/moral policing – expectation of heteronormative setup).

Daniel Chávez Heras @DChavezHeras

  • Local networks – against MOMGames. Humanities – always start with pics from antiquity. Pic from 1600s – recognised need to record the way they play. Also possible political angle … adults playing (infantilisation)
  • Around 1.8 billion players, 99bn $ US industry. 2016 – Pokemon Go .. casual gaming, even those not gamers play it. Owner – stock doubled. 10k hours playing online games before the age of 21 … like having a ‘second job’. Collectively 5.3 million years playing World of Warcraft. Is already part of our digital society with lots of people involved around the world as a business….
  • Lots of literature around games, but not much about the networks we use to connect and play games, originally people connected online to play games, but not together online – to talk around the games. First multi player game = Empire 1973… ran on a university network. Counter-Strike (2000) – could play either online or via LAN (much better performance) … features are there but disappearing.
  • WofW – now become services … pay a subscription to play, and most games the LAN option has gone. Network of networks … based on huge amount of infrastructure … most are hidden away and don’t impinge on our daily lives.. most don’t know which data center they are connected to, etc
  • Slide – diff between internet & LAN. LAN gaming often happens in domestic spaces, owners own the machines, etc… also improvised networks surrounded by junk foods… LAN = more peer-to-peer. Think about events … cost of food, electricity, space, etc, Local = know there’s an end point, play with friends, low security, whereas online have infinite number of people/never security.
  • Seeking mechanisms… basic survival mechanisms.
  • Play mechanisms … a lot harder to self generate… ?
  • Pokemon Go – are they about seeking, or about playing? Why is everyone heading online. Is it an addiction? Is there a large void with our lives/jobs – using online games as a substitute? Are they games or compulsive search engines … seeking users? More in common with labour than play?
  • Relationship between play and sex – has also been neurocircuitry … Candy Crush and Capitalism.
  • What about cultures of enthusiasm? Talk about effect, but what about non representational theory – eg feelings of togetherness etc
  • Lots of literature on work/play – oppositional – a form of labour … what about playing against strangers? Levels of competitiveness… think about board games are back … recreates LAN. Strong nostalgic tone… what about augmented reality, embedded within the networks?
  • Anthropology … lumping all gamers together when there’s distinct cultures in eg Korea, US, etc (Jane Mcgonnacal – critical of her work).
  • Physical space .. has it kind of being fetishised – about being together? In order to play you need other beings/physical connection? Laughter is necessary for play? In call centre share physical space but don’t laugh, whereas LAN space you do…

Sophie Bishop @sophiehbishop

  • Now researching Algorithm Bros. PhD was on beauty vloggers, now on ‘dudes’ … going to be in social media and society journal. Self built self styled growth hackers… sell algorithmic expertise… inspirational speakers/bloggers/ evangelists re algorithms. They are 3rd parties, not employed by YouTube… straggled pedagogy and entertainment. business jargon & expletives, some do a live critique… helping users mitigate system risk, including the risk of lack of visibility. Teach users to be complicit with YouTube organisational structures…
  • MatPat – game theory, 11m subscribers. Matt Gideon – tubefilter journal .. reverse engineering YT algorithm. Ethnographic study slide. High profile scandals re YT monetisation = has been a backing off…
  • algorithmic experts – intermediaries – Bourdieu. Legalised by closeness to companies + branding, etc.. play huge role in what culture gets made – informed by their value judgements and cultural beliefs. Social media platforms obsessed with gender/demographics – which can shape the kind of content served… videos are a mix of data science, popular psychology and salesmanship … cherry pick scientific theories … never critiqued YT model or advertising profession, etc. Operates in meritocratic framework … that assumes everyone has same chance to address raw ready to receive brains … see P Covington – deep neural networks for YouTube recommendations…
  • Corporations trust him more …. as a 3rd party = more authentic and trustworthy … enables them it take clients off YT. Although ‘experts’ are repurposing Google info… they say Youtubers are not interested enough in data, but in culture/itoned as caring about data … MatPat … sets self up as data nerd. Position YT as a big game, need to learn how to pay its algorithms – Gideon.
  • Brings in big audience of white, male, etc. Which can otherwise be hard to research. Doesn’t address inequalities in the platform.
  • Beauty vloggers much more community based, knowledge production through FB groups … eg did you see the post we put up, etc. Whereas men – more ‘here’s the knowledge I’m going to give you’…. feeding own constructed brand. Data only really relevant to gaming channels, but clients eg conde Nast = cultural production.
  • Who is the audience … in era of precarity .. those watching also seeking visibility…? It’s a risk management strategy. Always goes to safe lowest common denominator… e.g. optimise for certain keywords at Halloween… too basic?
  • Gendered advertising on YT – diff to get stats about to who it’s delivered, etc. VidCon trying to present idea that YT is multicultural, etc … this doesn’t fit with this.

Alessandro Caliandro: @Caliviral

  • Alessandro Caliandro, uni of Bath .. smartphones & internet use in everyday life – empirical research. Will we look up from smartphones, in virtual bubbles? Sociological theory … virtual reality vs augmented reality – use maps, social networks (not virtual – v real social relationships).
  • Digital around the world stats – show us that smartphones are important. With growth of eg WhatsApp – use of mobile messaging grew. Smartphones changed our experience and use of the internet. How we use it helps us understand society and sociality … limited literature – especially compared to social networks. Ease of access to data is one of the issues… technically quite complicated, need ethnographic (following your participants) – multi-sited – approach (Moore’s, 1993) – what people do with smartphones rather than what smartphones to do people. See Marcus 1995.
  • See photos of slides re quants quads and digital methods… technical/ethical issues.
  • Limited Hawthorne effect (Bouwman eg al 2013) – eg no porn (self) reported. 20-23 year olds interviewed/Focus groups
  • Limited privacy issues … data are collected anonymously, software records your access to a given app… ?? Informed consent.
  • What form of sociality? smartphone is always with me , and as a non human actor, reminds me to stay with it (notifications and FOMO). Patterns of data use … average hours is 3.10 hours per day, 99 per month, accessing social media average 1 min per time.
  • See diagram of usage, why down on weekends? Expected would be up as out … but less work needs? And weekends we are doing things that required less mobile access, or at home with other devices, people doing ‘real’ things.
  • Types of activity…. especially WhatsApp! Then FB and Insta.
  • Question – is this a virtual reality/bubbles … NO, would expect increasing time spent on eg YouT, but WA & FB – used for REAL comms.
  • How use smartphone?
  • For killing time and avoiding stressful situations – escaping into virtual reality … or rejoining social groups & activities
  • For organising activities (augmenting reality), including for eg shopping to send pics to friends etc or isolation from surrounding environment Pantano, Gandani, 2016
  • Smartphones are not responsible for creating a virtual reality, smartphone is an instrument able to create some form of reality, but also able to measure that reality?
  • Does smartphone create a hybrid society\reality … it’s not a bit of one and the other… smartphones encapsulate 2 kinds of realities. Can’t predict as related to variables/emotions …
  • social media – conditions of knowability … is a smartphone an assemblage doing ontological work? Sociality being constrained? How is the phone involved in doing sociality?
  • Now iOS gives screen time, reassessing and comparing some of the data.

Ysabel Gerrard: @ysabelgerrard

  • Uni of Sheffield (runs BA in digital media) – published widely on content moderation, worked with Microsoft – PhD internship eg Nancy Baym – about to release call for intake for 2019. @ysabelgerrard… ‘assemblages of silence on social media’.
  • Custodians of the Internet – we’ve regulated it in radio etc in way we haven’t done this on social media. Because of the promises from Web 2.0 and participation – eg YT Kids targeted, Logan Paul, etc – worthy issues related to content moderation, esp pro eating disorder content.
  • What IS content moderation? An assemblage … mishmash of technologies trying to enforces moderations rules, policies that convey them, and users who must obey but seek to circumvent rules. See Sarah Roberts – UCLA. Human beings who sift through content – new book coming.. when flag something – goes to an automated list, if already been banned, disappears, but most of ith is done by a human being. Huge amounts of labour – have PTSD – having to deal with … see Channel 4 Despatches.
  • This talk looked really interesting, but needed to head to the next event…
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Media & Press Media - Audio

[MEDIA] Has social media really changed our outlook? 2017 in Review (#metoo) with @UCBNewsTeam

Triggered by one of the biggest stories of 2017, the #MeToo hashtag, tied in with the story of Harvey Weinstein’s negative behaviour within Hollywood circles, I had a chat with David Peek from the UCB News Team, shortly after Time Magazine picked ‘the silence breakers’ of the #MeToo hashtag as ‘Person of the Year’.

So, here’s some of my notes in preparation, drawing on ideas from friends on Facebook, and some online research!

#MeToo

See: https://www.theguardian.com/world/2017/oct/20/women-worldwide-use-hashtag-metoo-against-sexual-harassment (20/10)

The movement began on social media after a call to action by the actor Alyssa Milano, one of Weinstein’s most vocal critics, who wrote:

If all the women who have been sexually harassed or assaulted wrote ‘Me too’ as a status, we might give people a sense of the magnitude of the problem.

*Note that this ranged from cat-calling to rape – all demonstrating the bigger cultural problem.

Highlighted an imbalance of power – with celebrities joining the movement, other women (and some men) felt empowered to speak out (whereas maybe fear of retaining job, etc. kept them silent before).

Nearly 68,000 people have so far replied to Milano’s tweet, and the #MeToo hashtag has been used more than 1m times in the US, Europe, the Middle East and beyond. The French used #balancetonporc, the Spanish #YoTambien, and in Arab countries the hashtags ????_????# and ?????_????# were predominant.

FB: over 12m posts, comments, and reactions, nearly 5 million people.

That’s what #MeToo represents, it’s happened to pretty much every woman you know. I think it’s really important that we don’t allow this to become a story about this one bad guy who did these terrible things because he’s a monster, and to make it clear that actually, it’s not just monsters … it happens in every country every day to all women, and it’s done by friends, colleagues, ‘good guys’ who care about the environment and children and even feminism, supposedly.

Most of these stories, inc #YesAllWomen, #BringBackOurGirls, etc. – have a story that begins before it reaches social media, but social media has a connecting and empowering aspect to it. Things that had accepted as normal, realised were not OK…. [despite the typical kick-backs from others online … whether trolls of those who just don’t understand.] Over 10 years before Tarana Burke, began the hashtag, though Actress Alyssa Milano kickstarted this particular event.

See e.g. Emlyn Pearce’s Facebook insights into people confusing him for a woman, and what that says about our expectations…

Cultural change is typically slow, because we have normalised a lot of behaviours, and it looks ‘ridiculous’ to speak out against them – The movement has also inspired a series of offshoot hashtags used by men, including #IDidThat and #HowIWillChange, in which men have admitted inappropriate behaviour. Have to look at how we respond to people admitting things too – if we jump on them – just going to retreat … so online interaction = trigger fingers = needs thought.

It’s not all public status updates: private messaging and offline action

Note that a lot of these actions have ‘behind the scenes aspects’ too – it’s not all happening on public social media. Once it reaches public, it’s probably happened behind the scenes for months already – e.g. spreadsheets passed around secretly re: reputations of men in a particular industry (e.g. Hollywood).

Within the corporate sector (so not specifically gendered) there is a “hugely supportive and influential workplace WhatsApp group which has empowered some people in taking on managers who have been dealing unfairly.” Important of understanding that this is going on out of the public eye, but that knowing you are not alone is really important [Partly why I think more churches should talk about this kind of thing in sermons, etc.]. “Yes. Employees who were being picked off one by one were able to find each other with a nod and a wink, and share information. There are now about 200 members and it hasn’t leaked. The management know it exists, but they don’t have access to it. It needed a trusted individual as admin, but the rest is easy. V powerful.”

All very well being aware of this kind of stuff – but need to know = going to be action, and that the rise fast/fall fast nature of social media doesn’t mean we get ‘clicktivism’ or ‘slacktivism’ = we join in, and then nothing happens. Have seen that some men have been sacked off the back of the campaign (wonder if any women have suffered for speaking up) – but see CNN on the possible legacy: “But experts say it’s going to take a coordinated effort between antiviolence organizations, the media and Hollywood as well as concrete actions from each and every one of us, especially men.” Calls for men to take responsibility (though know are those that complain that then speaking for women, but I personally happy to have someone else take the effort). Charity going for #IWillSpeakUp and #SupportSurvivors as hashtags, again drawing on celebrities, etc. Know that it’s unusual for something to happen without something behind it – e.g. friend Rachel Collinson was behind one of the early trending campaigns to get Aung Sung Sui Chi released – involved weeks of work to get the hashtag trending on the day + work with other organisations to make sure it meant something more than a ‘trend’ without action. As with WW2 posters (my original PhD topic) – don’t work alone – needs other layers of action.

“Keyboard apathy is such a problem in fundraising that in 2013, UNICEF Sweden tackled it with a hard-hitting poster and video campaign: “Like us on Facebook and we will vaccinate zero children against polio. We have nothing against likes, but vaccines cost money.”” sociologist Jen Schradie, who studies digital activism for the Institute for Advanced Study in Toulouse, France.”Based on my research, the movements that are most successful are those who have an organizational infrastructure in place: a network, a coalition, a united front of a group of celebrities or established organizations,” she said. Keeps the story in the public eye, needs proactive organisations, including churches. See example of e.g. Deliveroo workers last year who forced change at a head office level (likely been using WhatsApp, etc. need to know is enough people to feel safe taking action … know it’s not risk-free, but want to FEEL safer)

Support for people in a similar condition

I guess I’m then also thinking about e.g. breast cancer groups, where the agreement is ‘what’s said here stays here aside from generic advice that can share more widely’, etc. feels empowering inc in asking medical professionals for certain things.

Note that the #metoo campaign spread to #churchtoo (similar to schools not wanting to admit bullying – problems can’t be dealt with unless the problem is acknowledged). Need to believe stories, take action (not just praise bravery of men who admit it), purity culture means not enough knowledge about what happening.

Another church campaign this year was #thingsOnlyChristianWomenHear, kicked off by Sarah Bessey, where the Bible is used to justify terrible things, but then #ThingsChristianWomenShouldHear was started encouraging women to speak up, not be submissive, etc.

“It’s knowing you are not alone and that your voice can join the masses. It feels safe and less vulnerable a position. Also through 38 degrees, Parliament petitions and Change.org I think there is a growing culture of ‘we have a voice, we will use it’.

Subversive Hashtags & Subversive Action

So it is possible to subversify hashtags – for good or evil – e.g. when Sadiq Khan became Mayor were anti-Muslim sentiment hijacked by others – #LondonHasFallen –  2016 was also the year of #catsagainstbrexit – cats, the internet, humour – all a way of making a point without being too in your face … has pros/cons… This year, when we’ve been asked so many times to #KeepCalmandCarryOn – in the face of terrorist attacks – #BritishThreatLevels shows ‘the British spirit’

At the beginning of this year we also had the Women’s marches – with huge numbers of women feeling they could ride upon the power of the hashtag to attend a physical event  – one of many hashtags… similarly anti-Trump rallies (seem to have postponed Trumps visit), and when the EDL says it’s going to visit somewhere, social media rallies to get people marching against them – a lot of this is about how the news story is presented – e.g. the 2011 riots lots was made of the fact that Blackberries allowed people to organise to riot, ignoring the fact that the hashtags were trending later, and then demonstrated that people were using hashtags to organise a clearup, etc. Need to look at the data!

Taking Action

Another church based initiative = Project 3:28 – taking note of male/female speakers at Christian conferences and publicising them over past few years, but also looking at positive ways to make this different – e.g. this year a database for Christian women speakers is being developed so organisers who say “we don’t know any” can feel more confident in who they can invite …

Thanks to those on Facebook who helped with my thinking, and there’s a really interesting paper produced by University of Birmingham on the topic.

Categories
Cancer

[CANCER] Celebrating Clear Scans + @macmillancancer Digital Nurse #BreastCancer

Tomorrow is 6-weeks post-surgery, time that has gone both fast and slow… Last time I wrote I’d had the pathology returned, and had had scans as to whether the cancer had spread… and had succumbed to a wound infection. Apparently having bone and CT scans are pretty normal, but I hadn’t expected them, so that sounded like pretty bad news! So it was with a lot of nervousness that I went in, to be told that all the scans were clear… but there was no clear picture of the liver, so that required another scan. The constant waiting is very wearing, but unavoidable!

I’m pleased that the antibiotics for the wound infection finished last Friday, as I felt like I was on the deck of a ship … I’ve also had a bit of a rest of body MoT (other than the scans), with dental all clear/filling repaired (as if I have to undergo chemo I can’t have dental work done), and eye health also signed off (new glasses provided through work scheme on order as prescription has changed)…

Scans All Clear

Yesterday I went into the hospital for an ultrasound on the liver, expecting to have to wait til next week for the result – and came out having been told it was clear – with my muffin (which had been rescued from the freezer, as I’d not been able to eat for 6 hours beforehand) serving as a celebratory item:

I’m really happy, but to be honest, also a bit dazed and not quite sure how to celebrate – the tube of Pringles didn’t quite cut it, though the outpouring of celebration on social media has been something pretty special (and Kate’s tweet & it’s responses made me smile)! There is also the fact that although my body is now officially #cancerfree (as there were clear margins from the mastectomy), there is still treatment to come … exactly what is subject to more waiting.

Joining the Optima Trial

Throughout the last couple of months, chemotherapy was the one thing that was signposted as a given, with radiotherapy not sure, and hormone therapy for definite. I have signed up to the Optima Trial (into its third phase, so already pretty solid) – after taking a week to think this over:

Doctors decide who should have chemotherapy by looking at the size of the cancer and checking to see if it has spread to lymph nodes. But some people might not benefit from having chemotherapy. It is possible that they will do as well with just hormone therapy. So doctors are looking for better ways to decide who should and shouldn’t have chemotherapy.

With the trial, 50% will be randomly assigned chemotherapy. The other 50% will have their tumour sent off for testing, on the basis of which chemotherapy may be recommended, or may not be! If I hadn’t signed up for the trial I would have had 18 weeks of chemotherapy, 3 weeks of radiotherapy and hormone therapy for 10 years by default. The trial determines if chemotherapy is required. All treatments have hideous sounding side effects, but chemotherapy the worst … so if there’s a chance of it not being of value, that’s worth the extra 2-4 weeks wait! On reading one of my oncologist’s papers (well, OK, trying to read it) re Oncotype testing – a similar test from the US, it seemed clear that the value was both patient wellbeing (chemo is tough!), and also NHS funding (test is around £2,000, chemo is around £50,000).

Whilst waiting, if I can manage to avoid any further infections, etc., then I’ll keep popping back to see the wonderful nurses in the Bobby Moore Unit, meet the oncologist again on 13th November – and this weekend hopefully attend Premier Digital Conference Conference/Awards (for which I’m a judge) … and then have some time to continue writing!

Research

I’m really excited to see that Macmillan has hired a ‘digital nurse’. As DigitalHealth.net put it:

Macmillan Cancer Support’s digital nurse specialist, Ellen McPake, is solely dedicated to answering questions online to help those affected by cancer online, via social media platforms and the charity’s online community… A growing demand for online information about cancer diagnosis and treatment has prompted the creation of the role. Macmillan is also concerned patients lack the information they need and are instead turning to unverified sites which leaves them frightened and at risk of bogus cures.

I’ve encouraged churches for years to have ‘digital pastors’, or at least take the online as seriously as offline. One of the first things my medical team expressed concern about was that as a ‘digital specialist’ I would fall for all the dodgy information online, but note page 163 of my book, Raising Children in a Digital Age, where I’m talking about pro-mia sites:

Dr Rachel O’Connell, an internet safety expert in this area, notes that many organizations have been reluctant to set up online health sites, so other sites have grown to fill the gap. There is a significant danger that, because many sites are unmoderated, information isn’t monitored, so incorrect answers go unchallenged.

Digital literacy is one of my core interests, and my history degree/PhD emphasises context/content and interrogating sources, I think I’m pretty well equipped (although I guess desperation can cause strange behaviours). It is something I’m interested in looking from a research perspective though – what kind of information do people trust online, and more particularly, the use of online support groups (I’m in 3 very active breast cancer groups, plus a women in academia group, an anti-diet group + other groups, many of which are my first stop for information). There’s plenty there to think about. Tonight, however, sleep is key… and tomorrow I’m getting my nails done!!