So, I’m sat in bed, with the alarm set for 5.30am, with a need to be at the hospital for 6.30am, praying that I am first on the surgeon’s list tomorrow and honestly, just praying that I wake up at the other end of it, minus the cancerous lump that has become a bit painful to-be-honest. I don’t know how much I’m going to blog about this, but sometimes I clearly will – it’s part of what I do… and I hope I manage to do it with a mix of vulnerability and humour, wisdom creating lack of overshare, and with a touch of the educational!!
After dinner with my mum at the excellent (but very small, pre-book if you don’t want 9pm dinner) A Tavola, and a Facetime with my fave office buddy this evening, she suggested I blog about Just Eat being down and her ended up eating rice noodles with bean sprouts and chips in desperation but maybe I’ll write about a couple of other things whilst still rather awake … though Netflix may be calling, and maybe even some sleep!
What can I do to help?
That’s a question I am getting a lot, and I am truly appreciating the outpouring of support coming from so many different directions, though I think the postman is still quite bewildered! To be honest, I don’t really know yet, so having people around who are flexible but don’t necessarily expect a lot back is key!
- Meals, meals, meals, meals, meals appears to be the main thing that people who have gone through this appreciate (and a friend bought me a spare freezer off Gumtree, so there’s a bit of space now – I was preparing for what is usually a tiring start of term by prepping easy meals, so a bit ahead on that one! The BC Nurse says that I need extra protein and vitamins … so don’t everybody bring cake!
- I won’t be able to drive for a few weeks post-op, and possibly may struggle to/from chemo in the longer term, so I’ll be looking out for lifts!
- Being able to connect with people, people connecting with me especially prefaced with *Just thinking of you, no need to reply kind of messages. As I think I said before I fear everyone getting bored, and being deluged with people (when no is a hard word!) – I do love company – most of the time!
- After reading various stuff from within the excellent Facebook groups that I’m in, there’s a few ideas on Amazon to manage surgery recovery, and the side effects of chemo (no one knows which are going to affect you til it starts).
- We have tried setting up a ‘MyCancerCircle’ using the app, but I think that with (nearly) everyone on Facebook, I may revert to that, with maybe a calendar/request list app or some such…
- I am loving the thoughtful cards and gifts that I’m getting in the post, the drawings by children, and messages online, and nearly cried (again) last week when I said that whilst I wait to see how long things go on for, I was cancelling all my charitable direct debits to: Tearfund, Trussell Trust, LICC, Refugee Action, Alzheimer’s Research UK, Cancer Research UK, The Bible Society, Church and Media Network, NSPCC, Livability, Mind, Christians Against Poverty, Greenbelt Angels, (with Embrace the Middle East via Give as You Live) and friends have stepped in and covered every one! Hopefully will be able to pick them up again next year, but if anyone wants to add their support – feel free!
Those in the Facebook group(s) are very generous – anything that is pass-on-able, people seem to do so, whether it’s advice, experience, or practical goods – taking my ‘drain bag’ tomorrow!
What do I fear?
Well, aside from the thoughts that pop into your mind at unwelcome times such as ‘will I wake up from the op’, and ‘what if it has spread elsewhere’, most of them are more mundane!
Losing my independence – not sure if anyone’s noticed, but I’m a pretty independent woman – my mum’s coming for the next week, and I’ll need to get better at asking for help, and maybe some gentle reminders that I don’t need to do it all on my own! People keep talking about this being life-changing, and mostly I’m kind of resisting that… but in ways it sneaks in that it is – especially when I popped into Maggie’s yesterday – that’s a very warm, comforting place – we need more of those!
- Any impact upon my brain function – chemo brain is a very well known side-effect. For my mental and identity health (and financial), I am hoping to do some research/writing on ‘good weeks’ but we’ll see. If I need to let it go, I will have to … but some struggle afterwards.
- Any long-term disability (note, I’m not so worried about losing this bit of my body, or even, at present – the hair, but brain/body function) – especially resulting from the lymph node removal – higher risk of Lymphedema, and any loss of capacity on my left-side.
However, as comes through over and over again – cancer is something that has to be dealt with appointment by appointment, treatment by treatment – but you know, when you’ve lost control of something you want to try and feel prepared. Probably look back at this in a few months time and think “hah, you were worried about that!” but, you know…
Anyway, my alarm goes off in under 5 hours, better attempt to get some sleep, though the operation is 3-4 hours long, so I guess I’ll sleep then, and most of next week (and I slept very well last night thanks to Boots!). Results should come back about 2.5 weeks later, when I’ll get to meet the oncologist (who’s from The Christie), and find out exactly what they want to do with my treatment over the following 4-5 months…
Here’s to sleep, and to seeing you guys tomorrow evening online (unless I’m not in that headspace, in which case you can enjoy my mum Facebook’ing on my behalf!)
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) 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.