Today it was counselling day, and I thought that with NEAD I would be super happy and starting to talk about when we stop…
Like anything on this ‘cancer journey’ it’s not that straightforward. Partly because of the way that the news of NEAD was delivered, and also just the general mental health issues that come with cancer put a whole amount of strain on … and within a couple of minutes in the counselling room I was in tears. As one of my nurses said on Monday, it’s not surprising!
I’ve just signed out of everything workwise til Sept 3, and we talked about how important that this month is about recovery, and no need to think about work at all… but that meant I had a couple of things to try and get finished … but after pushing self quite a lot the past couple of days, today there wasn’t a lot left in the tank.
The 2 things I’ve been focusing on are
- Academic article that I’m writing about my experience of cancer in a digital age – trying to find an appropriate theory that worked/made sense to work with an autoethnographic approach. This is the current abstract:
‘In this auto-ethnographic paper I examine my experiences as a digitally literate patient undergoing first primary breast cancer treatment, and then further treatment for metastases. Cancer was an unexpected interruption to a life I was busy living offline and online, with diagnosis the start of a need to performed the role of ‘cancer patient’, alongside other roles in life. With over twenty years online, and a career in which I have sought to consciously disrupt the notion that the internet is a ‘dangerous place’ full of ‘misinformation’, I naturally turned to blogging and social media spaces to engage my pre-existing community in my journey, and also seek information and support from new sources. Using participation rather than observation, this paper critically reflects upon my interactive participation within digital spaces, articulating the affordances and constraints offered by both public and private spaces. Incorporating perspectives from Goffman’s theory of ‘performing the self’, drawing upon extant literature on storytelling and chronic conditions, and acknowledging the experience of social media as an everyday, ordinary experience for many, this paper addresses a need to understand the lived experience of cancer patients within digital spaces.’
- Reworking the bid that nearly got funded by Macmillan, and we’re now reworking for the NIHR. New deadline November, but lots to do before then, so seeking some support from the Research Design Service.
Neither has quite got to the stage I wanted to, and there is an extra hiccup with the second one to work through. The counsellor asked me why these pieces of work are so important (and we’ve talked a lot about why work takes up such a huge amount of mental energy) … I’ve always wanted to make a difference, and these two things would help make the experience of the last 2 years feel more ‘meaningful’. We also reworked it and bluntly said that cancer is uncertain, I know it will be back at some point, and bluntly, I want these contributions to knowledge to be made BEFORE I DIE (and also these things help feed into the promotion criteria, with a side effect of potentially being able to work less hours) and is this my ‘magnum opus’?. Obviously, I’m still working on material related to the church and digital too, but these feel like things that need to BE DONE! So, need to keep questioning ‘why does this need to be done now’ in order to try and give myself a break… I also feel like I have to spend a lot of time ‘proving my value’, so there’s a challenge to be dealt with there too.
Anyway, squeezed in a haircut this afternoon (aside from anything else my body has it’s own heating, so getting hair of the next = :-)):
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I mentioned that in the first appointment with the obs-gynae surgeon about the ovary-removal operation in September/October, he asked me to stop eating carbohydrates… and when I went for my scan results appointment, that was the first thing that the registrar oncologist mentioned (although the surgeon had indicated that they would still do the operation – it’s ‘just’ more complex/risky/longer recovery).
At the beginning of the year I wrote about some of my thoughts in dealing with ‘diet culture‘, and also that problematic CRUK campaign, and had been working on ‘increasing the rainbow’, listening a lot more to whether I was actually hungry (easier to do when you’re at home and don’t have work to worry about to be honest), and playing with portion sizes .. chemo then came along and alternately left me snacking and with a mouth where everything tasted rubbish. According to the hospital scales (have to be weighed every 3 weeks for treatment) was about 5kg down … but otherwise whereas in the past I was putting on around half stone every 6 months, since Beyond Chocolate weight has stabilised, feel healthier – mentally as much as physically, and food has not been so much of an enemy. Who knew that crisps in the cupboard could end up going out of date, and that chocolate could sit on the shelf for months…
I’ve really noticed since this appointment that I’ve been knocked off course – I ‘experimented’ for the first week in particular – and by the end of the week nothing would do but a family sized bag of crisps, and I’ve noticed that I’ve got the munchies a whole lot more (probably doesn’t help that have little energy, treatment side-effects, trying to work, and exercising very limited). The nurses are really clear that my energy should be going into recovering from the chemotherapy and radiotherapy … and a message that wouldn’t really help at any time, particularly doesn’t happen now. Mental ups and downs may be related to many things, but this doesn’t help…
The counsellor mentioned that my moods were likely to be all over the place once the physical recovery from surgery (3 weeks of not being able to drive) is complete, so got that to look forward to too! This was on whilst I was in the waiting room for my appointment today:
So the overall takeaway from today was – don’t need to have everything sorted ….no one gets everything sorted before they die, and one thing cancer does is remind us that we only have a limited time on earth … but having a limited time doesn’t mean everything on the bucket list (I don’t really have one, aside from a mental one) needs to be done NOW (though I wouldn’t say no to visiting Prince Edward Island before too long). Cancer is emotionally exhausting as much as physically, and overplanning can be exhausting … but when you feel totally out of control it’s one way of feeling more ‘in control’ … and also some planning helps SAY NO!
So, some of that head muddle got a bit straightened … but also don’t want more ‘shoulds’, and also – which is these is me, and how much is expectations from those around me?
And the next month is for rest and relaxation – in amongst seeing some friends that I’ve not seen since before cancer diagnosis…
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014; second edition in process) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.