‘ You set such high standards for yourself’ … a comment I get a lot … and it’s very true. I expect that I can do my job well (contribution to society, be a good team player, produce publications, give good feedback, etc), be a good friend, exercise, eat ‘well’, do what I said I would, etc …
I don’t think it’s sunk in that cancer is for life (and TBH even if I hadn’t got incurable cancer, it would still cast a huge shadow and have a physical impact on my life)… and part of me is still just waiting for things to ‘get back to normal’ … but got that ‘new normal’ to deal with now… and there is just not as much space in it. Pre-diagnosis I was working 50+ hour weeks, plus trying to fit the rest of life in … I was cutting back on some of the extra activities because I was so tired (that would have been the tumour growing and sucking all my energy), but then cancer bounces in … it’s got no respect for whatever is going on in your life (including pregnancy, no – not me) and takes over.
At times, cancer feels like a full time job … as you may see from my #waitingroomfeet … not forgetting a tonne of cancermin (cancer admin … related to hospitals, work, etc) and trying to keep people in the loop… and when some days I’m not waking up til gone 9am, then desperate for bed again early evening … it’s hard to fit life in. Cancer patients are told that exercise will help with cancer related fatigue, so I’m trying to do that … last Thursday however, I went to a dance class at the gym (normally a class I think is easy), and for the next 48 hours or so felt like I was swimming through treacle .. brain and body both shutting down on me. This week tried 17 mins in the gym on Tuesday and 32 mins today – though then heading out to try Wizards Unite in the evening sunshine left me sat on the sofa too tired to move … in bed now though!
Bearing in mind that I’d only had docetaxol 16 days before, I probably shouldn’t have been too surprised, but … still getting frustrated…. but considering I re-started exemestane last week (daily, for life), had my Herceptin & Perjeta infusion on Monday (yes, this is 3 weekly forever, or til it stops working), and restarted with the Zoladex injection on Tuesday (will keep having those monthly til oophrectomy done) … and had a very frustrating wait Monday to see oncologist but then no one knew what the appointment was for! Made it into work Wednesday for an event booked pre secondary diagnosis, and again Thursday morning for a meeting, then I started running out of fuel… challenging when have a writing deadline trying to work towards!
Suspect I’ll find some links to add to the comments later… and think of all the other things I was going to write … about feeling like you’re missing out, and loneliness … but I’ve taken my sleeping tablet (need to wean self off those too) so good night!
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.