From everything being quite quiet on the cancer front, it feels like this week has been full of it in various ways so far, especially impacting me with a lack of (quality) sleep, and a lack of concentration!! The weekend was busy, much busier than I’d expected – I got to see an old friend (stayed overnight to reduce energy expenditure), my cousin came and helped me put up picture frames that have been sat on the floor for quite some time, before we headed into town for lunch – and to get my laptop sorted at the Apple Store. I really thought my laptop was due for retirement (4.5 years), but after it’s insides have been hoovered out, it was given a hard reset, and Mojave was installed – I do feel like I have a new machine – so hopefully this will tick along for a few more years!!
I was waiting one more (large) picture, and had planned we would put it up in the big ‘picture put up session’, but that arrived when I got back from town, accompanied by it’s lovely artist Becky. My neighbour Bob came round and gave a few tips (and we continued to borrow his drill), and despite originally expecting a cityscape at sunset, and being rather overwhelmed at hearing what size it was going to be – well, Becky knows her stuff so:
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There’s something new in my lounge… thanks to Becky who has spent a long time on this MANCHESTER skyscape. I had a panic earlier on hearing of size and realising wasn’t a sunset and wondering if the reds would fit (I’d not seen it) – but there’s lots of red in the buildings and the lovely bright blue works!
After so much packed into one weekend, and the emotion/relief of seeing things up/completed, and combined with poor sleep, Monday was a challenging start, but I made it out for a swim, and caught up with a load of emails, worked on our research bid, before carpet fitter came – those are now decided and just waiting fitting of bookcase before get him in to do them all!
Hallway/stairs (4th one in from the front):
Bathroom – I was swayed by the fact that the ‘mottled’ look will mean it won’t show up so much dirt … I mean, it will get cleaned regularly, but still! :
I got a phone call from one of the BCNs to say that my CT scan had come back and been checked by the MDT – and that all that is showing is scarring on my spine from the biopsy area, and thyroid is a bit enlarged (but this was biopsied earlier in the year, and is likely to be rechecked in a few months), but otherwise nothing’s being ‘active’ or growing any new cancers that can be seen…
I started a 6 week course at Maggies on ‘Managing Stress Due to Cancer‘ – to be honest being somewhere for 10am is a stress in itself, but anyway… These courses are run under ‘Chatham House Rules’ – so we can talk generally about what they involve/what we learn, but ensure that no one else is identifiable. My main takeaways that I think I can remember:
- As always, most of what I am feeling – wobbled by the constant uncertainty of scans, media representations still being overly negative, exhaustion from relentless treatment, etc. affect others – we’re largely on the same page.
- Studies have shown that the stress base line is hugely elevated for anyone who has ever had cancer (let alone those still undergoing tests/treatments) – likely to be more tetchy, aggressive, wobbly, etc.
- Why are zebras not stressed? In fight/flight – they ‘fly’ and should they escape, just go back to eating… whereas human beings keep cogitating things!
- We put too much pressure on ourselves to get things ‘right’.. can we pull back on this?
- ‘Sleep hygiene’ is key – especially going to bed at a decent time (even if not falling asleep, look to be restful) – and that 18.3 degrees is the perfect temperature for sleeping in!
I then had a chat with a friend who is finding that the impact on energy levels are long-term, before heading into the Manchester Cancer Research Centre to meet a couple of the research team to talk about re-preparing our social media/cancer bid for the NIHR. Positive conversation, although we need to seriously look at the scope of the bid, and wait for Spring to submit it, rather than rushing for November. *Life needs to be taken in ‘small (pineapple) chunks’.
Then it was off to Stepping Hill Hospital to meet with the gynaecology team to sort out my oophorectomy (ovary removal – main source of oestrogen, which feeds my cancer 8/8). The last appointment was not a good one for my mental health – told to lose a vast amount of weight, assumptions that I drink fizzy drinks, don’t take any care of myself, etc. which sent me into a food spin (reaching for those crisps in the cupboard which were all OUT OF DATE because I’d not been eating them) … which took me about 2 months to get myself out of (proud of myself for doing so though – and yeah, I’m about the same weight, maybe a bit less now…).
Anyway, we waited for that (thanks Suzanne for support as I was quite stressed waiting for the appointment):
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Anyway, after around half-hour of conversations, it was agreed that I will be coming in to see the anaesthetist (which I had thought was happening at this appointment), and assuming he’s happy (which the expectation is he will be), I’ll get a date soon for the robot-assisted surgery (which occurs alternate Thursdays – and the next appointments aren’t til November)… for which I won’t be able to drive for around 3 weeks, with around an 8 week recovery (ironically I would have quite liked this not to fall over Christmas as I’m exhausted and need some extra recovery time, but anyway… if I still need it, will talk to the team).
Anyway, I am now consented for the surgery (death, blood clots, etc. are all high on the list…). I then went home via the supermarket for some fruit and veggies – then crawled into bed – completely shattered!
Yesterday involved yogalates, some more administration (work/personal) – including deciding that I’m booking a day off each week before my surgery, so experimenting with that 80% WLM informally! Sleeping tablet to try and break through the constant waking up in the night…
Today has been a bit more ‘bits and pieces’ day (as expected the sleeping tablet leaves me feeling fuzzy, but I hope will help tomorrow at least…), and I’m all organised for this fun for tomorrow morning, before working on some more research/supervision based work:
Mostly this week I just feel desperately OVERTIRED and am trying to get some equilibrium back!
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.