Last night I spoke to Stephen Nolan, along with Sara Bainbridge from Macmillan, and fellow cancer patients Lara Montgomery and Nic Murray (we largely spoke in that order, although there’s a bit of interjection), about what it has been like to undergo cancer treatment/progression whilst the pandemic continues, how it has affected diagnostics and treatment, and ultimately, the potential impact upon our prognosis. The interview starts at 31:20, through til 1:00:42 – and although we did it as a pre-record about 45 minutes before the show, it’s largely used ‘as is’.
I’d been contacted Thursday about the potential for this, and was rung around 90 minutes before we recorded by another producer to talk about how I was doing, if I was feeling fit for it, a recognition that it’s a personal topic and might be hard, so the pre-record gives the opportunity to stop and re-set as needed. Really nice to get that reassurance too…
I always do a bit of pre-thinking … things I thought about saying (and as you’ll hear, the questions don’t necessarily go that way – hence why I like to have options):
Being in NZ for COVID/getting home (and the delays that caused)
Delays in scans because stuck overseas/non-urgent, pressures on hospitals to take ‘safe’ procedures’ so less people getting stuff
Not being able to take anyone into appts and being given crap news on your own ..
The measures hospitals are taking (PPE/limited visitors/ongoing testing) to keep us safe … lots of plastic sheeting everywhere *and yes, I could have mentioned the mask for hospitalisation … !
The care that staff still give – and the Christie saying not expecting any changes in procedure til Spring earliest.. though get the majority of my treatment at Christie outpost at Stepping Hill Hospital.
Cold-capped before – not even an option for many now, and psychologically not for me now – so might lose my hair this time
The suspension of lots of cancer research trials meaning likely to be less options + loss of funding to charities similar impact.
Within breast cancer around 30% will end up with secondaries – but that only around 12% of research funding goes into targeted treatments (but then other cancers may have even less…) …
I wanted to get across METUP-UK aims and objectives in some form: METUP-UK – one of patient advocacy groups fighting for better policies around treatment (e.g. NICE says can’t have x treatment if have had y treatment, although may have been proven to work overseas, and could buy someone another 2+ years), better data collection … along with better knowledge of metastatic cancer (people want to skip out of primary treatment believing it’s all done), and support for secondaries patients who can feel written off…… and this was pre-COVID! Do know people whose treatment was suspended and got progression … *could say same with me, but at least I got to go to NZ!
Support groups such as Stage 4 Deserves More, Make 2nds Count, Secondary1st, and YBCN for inoperable… and hopes for an NIHR bid looking at social media/cancer so people can access better info & interact better…; BRiC Centre – Building Resilience in Breast Cancer Centre – undertaken research demonstrating the mental health impact on women – of delays, lack of scans, etc
Saw someone else who was advertised as ‘losing their battle’ today – not a fan! It’s ALWAYS in the papers … as #YouMeBigC – another Radio 5 programme did a whole episode on … the metaphors say a lot.. and put a lot of pressure on the individual to be positive, etc..
The way that the Nolan sisters cancer was reported (they have metastatic, incurable cancer, not ‘spine cancer’ or whatever, and they may get 30+ years, or, the average (recognising averages are a mess) is 2-3 years – with ongoing treatment.
The poor data collection – so primaries/secondaries not necessarily counted separately.
The impact of shielding – SD walks for mental health, missing my wild swimming … but people rallying around to deliver things and the joy of zoom etc ..
Worries that Covid is going to stop seeing people/travel… what happens if I don’t get well – plans for back yard but not same ..
Missing my cleaner = when energy levels low .. though she is about to restart, with lots of PPE
Ironically easier to get through to the GP it feels at present with telemedicine, inc a video call – though keen for balance with f2f!
The distance from family – my mum travelling 5+ hours to come and help out ..
The challenge of relying on public transport/ambulance service at present … with compromised immune systems (and all those people wearing masks on their chins)
People not being able to get certain brands or quantities of drugs .. though that may be more Brexit
Confusion over shielding and being able to work … vulnerability … no clear message
Some difficulties remain the same … others are unique to Covid!
I was in conversation with Jo Frost (SuperNanny – who had earlier retweeted this) and Sophie McCartney (which Google gives me her Ed Sheeran parody) and presenter Geoff Lloyd (whose Twitter account amuses me with his heading with thousands of unread emails).
On Saturday 10th March, Culture Secretary Matt Hancock spoke in The Times(£) about social media being ‘broken’ and how he wanted to fix it before his children went online (13 being the legal age limit for most social media accounts, although WhatsApp is officially 16). This is the segment I was sent to respond to:
He also wants a new code of conduct to ensure that children access only age-appropriate material online. There could be age ratings, similar to film classifications, for websites and different sections on platforms such as YouTube for over-18s, over-15s and over-13s. Parents could then set internet filters at home based on their children’s age. And, most radically of all, he is considering mandatory limits on the amount of time children spend on certain sites. “For an adult I wouldn’t want to restrict the amount of time you are on a platform but for different ages it might be right to have different time cut-offs,” he says. “I think there is a genuine concern about the amount of screen time young people are clocking up and the negative impact it could have on their lives.”
Families, he insists, need more support from the state in navigating the online world. “This technology is new — the smartphone was invented in 2008 — and we are the first generation of parents to have gone through this.” His 11-year-old daughter doesn’t yet have her own mobile phone and he admires schools that “take an absolutist approach” to banning them. Parents should also set an example, he says.
“At home we have a box in the kitchen where we put our phones when we go into the house . . . Part of this is putting laws through and some of it is about how society behaves and grows up. Children must be taught how to manage their online lives, including data protection and dealing with cyberbullying. I am extremely worried about sites that, unintentionally largely, promote anorexia. We are putting resilience in the digital age into the curriculum.”
The segment got cut a little short (and ran 20 mins late) because of Vince Cable’s Brexit comments breaking, but here’s the segment:
I was expecting to be able to respond to the other comments, so sharing a few more thoughts that I’d noted in my preparation:
I like the intent behind it, and definitely think companies and state have responsibility along with parents/ friends/ family/ schools/ churches to look at how best to enable digital health, but the time limits thing – especially mandatory doesn’t work for me … recent research focuses upon quality of what is being done online, instead of time, and it is also an excellent tool for e.g. disabled/autistic kids.
The anti-diet group I work with has a mantra of ‘be your own guru’, so what works for you, may not work for me, so people put forward suggestions, people try things, and if they work, they do them again and build them as habits. So healthy digital literacy, conversation with your children, spending time with them, understanding their digital environments makes much more sense than a random time limit (same as the 100 calorie limit on snacks).
No one yet seems to have found a way to age verify online, so that’s problematic for that bit, although I write in my book that parents letting their children on before a platform’s correct age is sending a wrong message about other rules, but also the platforms can’t throw their hands up and say ‘we say you have to be 13’ ignoring all the research that shows that large numbers are on before then…
The ‘in a box’ at school – I’d rather children were shown how to do them well, so a mix of classes in which the box comes out, and others where phones are permitted – same for home – have friends who put all their phones on a shelf at home time/dinner time, and have to be charged downstairs at night for everyone, etc. but people need to find what works with their particular situation…
I had a chat on Facebook (only visible to friends), in which people contributed tales of children with Aspergers and how the screen removes the stress of face-to-face interactions, when people are ill (any age) it’s a really helpful tool, the possibility that children are able to self-regulate their use, that social media is used to keep in contact with friends who have been left behind, that children use the internet quite differently from adults and we shouldn’t assume that it’s all ‘bad’ – remember the things we got yelled at for (putting down a book before dinner was a thing that happened!), and one that I loved – when told to put the phone down, said “can I just please finish helping my friend with a bit of a situation”. Remember also that digital and social media is much more interactive than TV watching – and can often be very creative!
The black/white nature of the notion of having fixed screen time doesn’t work for me at a philosophical level, let alone at a practical level – how do you manage that across multiple devices, is this going to impact on privacy, etc., and how much resources will be needed to ‘police’ this – resources which could better be invested in digital literacy courses. There was reference in the interview to digital natives, not something I’m a big fan of, much preferring Dave White’s visitors and residents theory.
The narrative raised in this speaks to the fears that have been gathering pace over the past few years, including the stories from those who originally invested in Facebook, etc. There is no doubt that the companies need to look at their responsibilities, and that the government should look at where it can step in, but assuming that ‘screentime’ is negative and that it is all the same is unhelpful. There’s still hangovers of the notion that the internet is ‘virtual’ and a ‘wild west’ – some bits are – but we can be teaching each other (let alone children) positive behaviours to undertake there. A common cry is “I’m addicted to the internet” etc – I’ve spoken about this several times – addiction is a medical condition with particular traits – there is no doubt that e.g. games developers build in addictive behaviours that need regulating, but for many people, there are simply bad habits that people could experiment with – e.g. I had a friend who didn’t pick up her phone til 9am in the morning for a month to see what this did … remembering that what works for some won’t necessarily work for everybody!
I gave a talk on resilience a few year’s ago, in seeing resilience as the ability to bounce back after being squashed in some way, and found this quote from The Guardian interest: “but the concept of resilience now applies more frequently to humans and has evolved to understand “toughness”, less as rigidity and more as elasticity. In other words, resilient humans need not be indestructible brick walls that the wolf can’t blow down, but more like trees who can bend and sway with the wind.”
“If we want resilient kids we need to understand what young people’s experiences are online, listen to their concerns, and intervene with their best interests in mind.” Jane Tallim, Co-Executive Director, MediaSmarts, in article titled ‘Young Canadians need less surveillance and more mentorship online: national study highlights the important role of adults in kids’ online lives’ “Zero-tolerance policies don’t work. Encouraging trust and open dialogue is the best approach, particularly when dealing with mean and cruel online behaviour”
“We’re doing this because all the research tells us that children and young people respond best to their peers. Whether they’re under pressure to take part in a dangerous prank, or to victimise someone, or whether they’re an online bully themselves, stories told by other young people are most likely to resonate and to help them cope, or change their behaviour.”
Most of the fears are tied to technological determinism – assumes that the technology is at fault, rather than the surrounding culture, the people around it who decide what is acceptable, what is made, what algorithms work, etc. We need to look more at the ‘social shaping’ of technology – the affordances and constraints it gives. Social Media offers a lot of space for conversation and listening, although, as with offline conversation – people usually rush to post and say their thing!
The use of e.g.social media agreements can work at home, school, church, etc. There is an assumption that recognising the positives of social media, means that advocates put no thought put into it at all, but my book subtitle is ‘enjoying the best, avoiding the worst’ as we seek to use wisdom (and that doesn’t necessarily mean ‘digital by default’). As with all of life, life online is not risk free, and what works for one won’t necessarily work for all (e.g. children with unlimited chocolate learn that they can use as they wish – the need to use something ‘bad’ disappears).
Need to see less as either/or online/offline … but a blend – how do they all work together? What can each form of communication do well?
How would I advocate for parents?
Don’t chuck them in any more than pool/park – life is not risk free
Conversation – get them to show you …
Early age ring-fence what they can see, as they get older give the more space/responsibility – note that 13 is the age for most social network sites (16 for WhatsApp)
Age verification doesn’t yet work..
Offline life amplified – so if you’re already tending towards depression, etc… (Correlation/causation) …
Assuming that switching off is always the answer is not particularly helpful (I’m collecting stories about screentime/addiction on Wakelet). We need to look at the surrounding culture much more about what encourage people to behave negatively online, consider whether the boundaries we are putting on children’s internet use is helpful (and our own for that matter) – tech should not be a free for all with children staying up all night using it – but penalising the ones that use it well because of others isn’t helpful! It’s a big debate which has been going on for years, and has reached a bigger layer of public attention in the last few years – and it’s a subject everyone has an opinion on – need more research – such as that undertaken at LSE.
Shortly after this picture was taken, I was on responding to the story about Danielle Lloyd sharing a photo on Instagram of her son with her new boyfriend – as shared by a number of news outlets, including The Daily Mail. The other participant in the conversation, Ben, had had ‘an amicable divorce’ and was giving his response.
The notes that I had prepared were (bold bits came up somewhere in the conversation):
With fame comes extra responsibility to think before pressing that button – just because we can, doesn’t mean we should… so ties into questions of larger culture, which I might have opinions on, rather than expertise in. Part of our larger obsession with celebrity …
I have no idea who these people are, much as I don’t want to know who e.g. Kim Kardashian is – unless she’s using her celebrity for ethical reasons! Were these pics posted to make the news, did she know that they would be controversial? And you’re never going to be loved by everyone, especially in the UK where we love to build people up, then knock them down!
Depends partly how the relationship with the dad is – as surely he’s likely to be happy to see his child secure and happy within the new relationship as they’ve both moved on. Comments indicate that he also shares pictures and does need to fit with the wider narrative of what is shared… The responses on Instagram are interesting – largely positive/to her defence…
The question here seems to be related to the question of what is appropriate – and the assumption that anyone not related by blood is a threat to a child (step-parents = OK + can be problems with blood relatives). Could lead to bigger questions about our expectations of women, etc…
Also a question as to how the media, needing to fill the 24 hour news cycle is sharing this kind of story – particularly the red tops… and reposting the picture… and taking the opportunity to drag up cheating, etc. and an opportunity to show her cosmetic Brazilian bum lift … headlines, etc. and the way the story is framed change its meaning a lot.
Related to larger question of children’s pictures, etc. online – story in NY Times last week about children asking that their parents post less pictures of them – it is a public space … other celebrities have been very careful not to overshare … part of the thing with online is that it’s so easy to QUICKLY share… (we all need to think before we share)
Good Facebook discussion, including Heather Stanley – “But intimate, or arguably private moments move us all the time. For instance, the photo of little Aylan Kurdi lying washed up on the beach – should it have been published without permission from his family, or at all? It changed the way the the world saw the refugee crisis (for a while anyway.) And who knows what this photo has done for the fans of Danielle, maybe who admire her for going through difficult family times.”
The power of ‘below the line’ comments – which we always say don’t read them – tend to be filled in by those with strong opinions going into battle, and often don’t reflect well on anyone… and as FB respondees said – everyone does seem to have an opinion on those they think they “know”.
We ran into the news pips, so it was short and sweet, but interesting story non-the-less! Audio should be available on iPlayer later.
First thing spotted on the phone this morning – an invitation to comment on Martha Lane-Fox’s statement that we have no choice but to engage with the internet:
I’d been contacted Thursday about the potential for this, and was rung around 90 minutes before we recorded by another producer to talk about how I was doing, if I was feeling fit for it, a recognition that it’s a personal topic and might be hard, so the pre-record gives the opportunity to stop and re-set as needed. Really nice to get that reassurance too…
