Over the summer, I was asked to contribute to the video series ‘Expert Women‘ for MMU Business School, and last week we recorded. We talked about moving from my original research in history, to current research in digital, my plans for research related to social media and cancer, and some of the media work that I’ve done. Here’s the output (only 3 minutes):
I’m pleased to have been invited to join Manchester Metropolitan University’s new Centre for Decent Work and Productivity:
Work that is both decent for workers and productive for organisations, is vital to the success of any good society. Our research centre builds knowledge about the relationship between work quality and performance, and how these can be aligned.
We tackle the key question: “What is, and what causes, decent work and productivity?” through our four knowledge platforms. The knowledge platforms also address the seven challenges, which we believe decent work and productivity face.
The Changing Nature of Work
Workplace Wellbeing
Vulnerable Workers in Employment and Self-Employment
Creating Greater Diversity and Social Mobility in the Workplace
Generating Decent and Productive Work in Small Enterprises
Designing Decent and Productive Work in Health and Social Care
Using Knowledge to Generate Decent Work and Productivity For All
My primary affiliation is with Work and Working Lives: ‘This platform is interested in managing people, worker voice, wellbeing at work, pay and reward, and regulation of work’, related to wellbeing at work in a digital age. I have a secondary affiliation with the Sylvia Pankhurst Gender and Diversity Research Centre: ‘This platform is interested in gender, sexuality, black and minoritised ethnic workers, age, class and caste’, especially related to women in leadership.
So, here we are, a year on from the official diagnosis of Breast Cancer (looking back at some lovely responses to the first tweet about it, although I’d already been quite overwhelmed by the ‘hugs’ etc via Facebook even earlier). I decided quite early on that I was going to use social media and blogging to talk about what was happening, even if I never expected to use the word ‘breast’ quite so many times in my life – or to have so many people see them (now it!), because a) awareness is important and b) it’s a space I’m embedded in and an easy way to reach many people as energy has fluctuated! The material I’ve produced may form the basis of an article for the Journal of Sociology of Health and Illness, but that’s for another day!
The questions in the heading, ‘So, is it all over then? You’re all right now, then?’, are the typical ones I’m now getting. It feels like a combination of people wanting it all to be over (it’s been a long year, especially so for me, but also for those around me – I know!), and hope that I’m ‘on the mend’, but the typical answer is ‘yes and no, not really’!
Surgery was in September, Chemotherapy ran December to March, I started Tamoxifen in April, just before radiotherapy – which ran through til May. So, that’s what most people consider the end of ‘active treatment’ – or as I sometimes describe it – having been slashed, poisoned, and burnt! *Might yet write a book with that title!
Mixed in amongst all of this has been a multitude of appointments with specialists, many blood tests, and various scans – most recently a DEXA scan (to set the baseline for my bone health), and I am awaiting what will hopefully be a final MRI scan on my spine (final if it confirms that is unchanged over 6 months, in which case no one’s worried about it – they say that often these kind of things are there for years until someone pokes around for some other reason.
Only a couple of weeks ago, I started the next stage of Endocrine (hormonal) therapy, with injections of Zoladex – likely to be every 28 days for the next 5 years (via a trained nurse at the GPs), and in around 6 weeks will be back at the Christie to see if my oestrogen levels have reduced from around 2000, to around 70, in which case my Tamoxifen will be swapped to Exemestane – a daily tablet for the next 10 years.
Essentially I’m now being pushed into a ‘chemical menopause‘, so possible to bring on all the menopausal symptoms, but without the slow build up of a normal one, on top of a body that’s already been #SlashedPoisonedBurnt! I was told that chemo had already aged my ovaries by 5 years, and as I’m 43, we’re now seeking to finish that process off! And as they are seeking to remove hormones from my body, no option for HRT or any other replacement therapies… so we’ll see how it goes!
Physically, the main ‘after-effect’ is fatigue, which I was warned would last around 3 months post radiotherapy (which has now passed), and if it continues to visit the GP. I’ve essentially been working on getting enough sleep, getting up in the mornings, and continuing to get out for some fresh air every day (Pokemon anyone?), as advised! I’m hoping to take up 6 months reduced gym membership via the PARiS scheme (although I prefer social/outdoor exercise, maybe for 6 months!!), and in a couple of weeks I’ll be going on ABCD Exercise Retreat (I get shin splints, so can’t run, but I do enjoy hiking, cycling and swimming … and karate!).. hopefully the breathlessness from hills/steps will gradually ease!
Anyone who knows me that I’ve never been great at pacing myself – life is too exciting and there to be explored – and now it feels like it needs to be seized with both hands which is leading to crash and burn episodes after possibly ‘doing too much’, but I also don’t want to wrap myself in cotton wool. I thought I did quite well this past weekend at a fabulous Greenbelt – I didn’t camp (so slept!), didn’t get there too early didn’t plan to go to loads of talks, mostly sat in the Jesus Arms and chatted to people – or bumped into them in between venues, had a go at a few new things, watched performances, and went to bed early! Wednesday was still largely a day with limited movement!!!
Officially the meds I’m on are likely to cause insomnia and more fatigue – but I am – so far – sleeping heavily (although some very vivid dreams, though thankfully none of the hot flushes yet!), sending myself off to sleep with Harry Potter on Audible (finally onto Book 7 today, having started listening to Book 1 in September), reading more/scrolling less, but this does mean I have limited ‘awake’ hours, along with limited energy, so maybe I’ll finally learn to say ‘No’ – as e-mails and private messages pile up (apologies if I don’t manage to give as much social media advice this year)!
I feared chemobrain, and whilst it’s definitely not been as catastrophic as expected, it’s definitely making it’s presence felt! Forgetting names, places, words – even whilst on live TV (though no one noticed, so that previous practice clearly paid off!) forgetting what I’m saying in the middle of a sentence! I’ve managed to keep going with writing, etc. but it all takes a little longer, and a little more effort…
Aside from fatigue and chemobrain, and a lowered immune system, the other main physical issue is peripheral neuropathy, where the tips of my fingers and toes are quite numb – I can still do clothes up, which seems to be the standard question, although I look back on things and notice more typos where my (officially) touch typing has gone a bit to pot! The meds also cause some aches – shoulders, back, and – weirdly – calves! And, of course, the surgery site is a mix of numbness and tingles!!
Otherwise my hair is fully back (it did thin, though only if you looked very closely!), although my eyelashes are back but starting to fall out again (apparently they’re on around a 4 month cycle, and this is normal), and I think my eyebrows still seem to have some patchy areas – but I received an eyebrow pencil from Look Good Feel Better, so .. ! Skin is also quite dry, but I was given much moisturiser by people (and the GP prescribes Aveeno) so I am trying to make time to put that on – and do manicures for splitting nails.
I have a lifetime risk of developing lymphedema in my left arm, as I have no lymph nodes (infection fighters) left on that side – apparently not to be feared, but also to be avoided where possible. The other question hanging in the air is one of reconstruction – yes, I am what is officially known as a ‘uniboober’, and so far, I’ve not seen anything to persuade me that I need to undergo more surgery to have a reconstruction, so very thankful for my prosthetic(s), and my knitted knockers!
This article by Peter Harvey is widely shared:
after the treatment has finished and at the point where you can begin, bit-by-bit, to deal with all that you have been through and all that is to come. You may have had to endure months of treatment by knife, chemicals or radiation until you are probably sick of the whole business, both literally and metaphorically. Now is the time to heal, both body and mind…. The first part of this framework is the recovery process that has to be gone through. For me this happens in three stages: recuperation convalescence and rehabilitation.
I’m continuing counselling sessions at The Christie every fortnight, which are proving helpful, if tiring! One of the things we’re looking at it is the fact that my days have very long to-do lists in them – one of my days off I only had ‘sort washbag, and pick blackberries’ on the list, and it was lovely – so we’re looking at how to realistically reduce the pressure on my brain (which can feel quite overwhelmed, and as if it’s constantly in conversation with itself)… at least for now!
According to the Strengthsfinder test, achiever is my number one driver – so I never feel what I’ve done is enough, and I always undervalue my own contributions, so that’s something we’re dealing with now as I just don’t have the same capacity as before… that is causing A LOT of frustration … so I’m holding on to the things that I can see particularly value me for ME! Cancelling a whole load of subscriptions to various things – magazines and apps (ironically Headspace was causing all kinds of stress, so stopped using that) – though as of September, I’ve managed to pick up my charitable giving again – thanks to the people who’ve covered it for me this year!
I feel, at the moment, that I have very little ‘control’ over my emotions – having not cried much beyond the points of diagnosis/surgery/start of chemo, tears are randomly coming out of nowhere! I’ve been on antidepressants for several years, but never suffered from anxiety – and that seems to be rearing up! In many ways, it still feels a bit like it’s all happened to someone else, and maybe there’s finally to be some space to realise that this happened TO ME!
As the oncologist said, if you’re in the unlucky 20%ish (for recurrence/secondaries), you are, and we’ll deal with it then. For now though, we’ve done everything – with curative intent, and we’re now looking to live a life as if cancer has been dealt with – easier said than done so far- although I’m feeling largely optimistic!
Lots to process here, I suspect … and much of it won’t be in public – and some may be on Casting for Recovery in Dundee just before term starts!
That would be the other question from people ‘when are you returning to work?’. Officially, thanks to the generosity of the University, and the fact that I have a part of my role (research) that I’d typically expect to do at home (thus avoiding the bugs that are rife in a university, for my immune-compromised system), I have been given ‘study leave’ since diagnosis, combined with sick leave as appropriate (around 8 days for surgery, around 10 weeks for chemotherapy, and around 3.5 weeks for radiotherapy). My year, workwise, looked something like this (and involved quite a lot of ‘life is short, let’s give it a try’ that I might not have tried before):
Physically I’ve been popping into work for the odd day, as seen here:
This summer, I have been using my annual leave to work 3-day weeks (and taken this week off – Jersey here I come!), one day in the office, 2 at home. They’ve been pretty full days to be honest, but as term approaches there is more to be negotiated. Occupational Health were clear in the face-to-face session that they felt I’d done a lot, and it’s now about gently layering some teaching/physical presence, although the letter written is rather vague – except that they only want me to need to be physically present for one short day per week, with the rest done at home. It’s a challenge to find the teaching aspects of my role that fit in with that… and causing me some anxiety! However, I have done as I promised, turned work email/social off til next Wednesday!
Digital Fingerprint is my social media consultancy – I had to turn down a few pre-booked events after diagnosis, and I suspect it’ll be very much on ice for this year – at least the public speaking side, although the odd commission for writing is enjoyable, and potentially doable.
Knowing what to say to someone with cancer can be tricky – one of my new friends Sara has recently written on this – starting with simple positives:
1. “I am here to support you no matter what.”
2. “I don’t know what to say.”
3. “Tell me what I can do for you.”
To be honest, I’d rather people spoke to me that over-worried what they said to me – I work on the assumption that pretty much everything I get asked comes from a good place (well, from friends anyway!)!
I did enjoy chatting to my Macmillan Nurse friend Maddy at Greenbelt about how the stats for recurrence are based on a lot of older women, and that she rarely sees women with breast cancer in her palliative work … and if you’re Winchester-affiliated (or even if you’re not) and want to support a good cause, help her dream of Winchester Hospice come true!
Poem shared on Facebook, agree with some of it! We’re all unique so…
Macmillan, a cancer charity, seeks to undertake research with impact, keen to invest ‘in research that will deliver long term benefits for people living with cancer’. As someone who has found herself in ‘the cancer world’, and as a digital researcher, I was not surprised to find how helpful Facebook groups (along with other social media, and the occasional foray into an official forum) were in helping source information, especially when appointments with the medical teams are fairly ‘swift’ (although if you have a list of questions they’ll answer them!). From a fairly early point, I started wondering if there was a research question in this, that would help health care professionals understand what information is occurring in those spaces, how these are managed, and how this impacts on the decision making process of patients (and their friends/family).
Around about the time that I was undergoing radiotherapy, Macmillan put out their call for the Research Grants scheme, and this included:
How to most effectively get information about their diagnosis and prognosis to people living with cancer to enable them to make the right decisions about their life, treatment and care: with sub-clause The role and impact of peer to peer information provision (eg through online forums, social media, face to face) for people living with cancer, and the implications for healthcare professionals.
This was a little earlier than I might have planned to go for funding, and I spent quite a chunk of sick-leave sketching out ideas. Once back in work (Manchester Metropolitan University), there was support from other academics, and the research team, and we put together the short ‘expression of interest bid’, submitting it just after I’d been to see ‘A Space for Sharing‘.
Today, we found out that we are one of only 12% of projects being taken through to the second stage, so I/we have til September to put together the full bid. Lots of learning for me, but I think a lot of support from work to help progress this – we’ll find out if the final bid is successful in February, with a view to having a research assistant in place by summer 2019.
Social media is now a part of everyday life (Lewis, 2018b), with 77% of UK internet users having at least one account, and 91% of those having a Facebook account (Ofcom, 2018). Social media spaces provide a sense of community for individuals in user-constructed networks (Pittman, 2016). Facebook provides both personal space for individuals to connect with their own friends and families, and public-private spaces that allow individuals to network with strangers with shared interests (GlobalWebIndex, 2017). One shared interest group is ‘the coolest club you never want to be part of’: cancer (BBC, 2018), which Lewis became part of in 2017. There are an estimated 2.5 million people living with cancer in the UK (Macmillan, 2017c), and with more living longer (Cancer Research UK, 2015, Macmillan, 2017b), and feeling lonely (Macmillan, 2015), people are looking for support/information online, including through peer-to-peer social network spaces (Bath, 2017, Baucom, 2017, James, 2014, Pietrangelo, 2017).
Lewis (2018a) with 17 years of experience researching the digital environment is a very active member of cancer spaces online. Cancer communities on social media ‘have a lot of information to share with each other’ (Veinot, 2010). With the internet seen as a ‘dangerous place’ by the media (Lewis, 2014a), full of ‘misinformation’ (Macmillan, 2017a), there is a growing drive/need to research the intersection between social media and cancer. Social media is at its heart about relationships and communication (Lewis, 2014b). Campaigns such as #ThisGirlCan have demonstrated that listening to a target community, understanding fears/needs, enables effective communication and informs policy and practice decisions (Kemp, 2016). The activities occurring in social media spaces, both the therapeutic impact gained through the sharing of knowledge and information, and its impact on clinical practice, needs to be understood.
Research Aims:
The key focus of the project will be upon the nature of online cancer spaces and communities, particularly what and how information is shared within them, and how this interacts with information elsewhere:
The bid then continues to give the methodology of the project (qualitative interviews, larger survey to cross-check, and focus groups to test the recommendations provided). It’s not possible to undertake participant observation within groups, and there’s also a lot of sensitivity re even asking in groups, so there’s a lot of thought has gone into this. Collecting participants is likely to be through The Christie, one of the project partners; other project partners are De Montfort University, and University of Winchester. The second page of the form focused on the anticipated impact of the project.
References:
There is an extensive further reference list behind this project.
I’ve been featured on MMU News, as I’ve had my research accepted for use as submitted evidence to a parliamentary inquiry on the impact of social media and screen-use on young people’s health https://bit.ly/2K9osdH :
