So, last week most of my brain energy was still being taken up with feeling nauseas … but the pharmacist, whilst trying to get hold of haloperidol, which one pharmacist thinks will give manageable side effects (so many things close my brain down), and another thinks won’t – but advice is to try it … but first I had to find it – ‘manufacturing issue’, ‘discontinued’, and ‘in stock’ led to me being able to pick that drug up today – now do I wait til Monday to try it?!
In the meantime, the pharmacist has issued me with dexamethasone over the past couple of weeks… a cheap and easily available steroid… in fact you may have seen it blamed for some of Donald Trump’s tweets over the past week (steroids typically leave you rather hyper, and maybe remove some filters):
I’ve been issued with just 4mg for the day after treatment (and I need to remember to take both in the morning, otherwise anything taken after around 12 noon leads to particularly limited sleep that night), and 2mg the day after. The hope is that this will manage the nausea … which finally at the beginning of this week it started to do. As ever, however, one drug solves one thing, and creates another … and the side effect (aside from steroid flush, steroid craziness, and possibly a little ‘roid rage) mostly seems to be extreme heartburn …. so I’m back on the lansoprazole every morning (having to remember to take that and the cyclizine 30-40 minutes before any food), along with Gaviscon all over the house. The GP has also issued another dose of flucloxacillin to try and deal with my toe … also asked me to ring the podiatrist (question of whether is ingrown toenail, or a callus) – but apparently they insist on recent antibiotics… I hate this particular one though as need to take it 4 x day, not hour before/2 hours after food… which when you’re only out of bed for 12 hours a day…!
With less nausea, I have been able to start to think about doing a few bits and pieces (I am doing a lot of background tidying up of this website, ready for a new design), including starting to sketch out a social media strategy – particularly the blog – for METUPUK – a mix of thinking long-term, and trying to get some content out for Breast Cancer Awareness Month (beyond the pinkification)… Secondary Breast Cancer only has one focus day – 13th October – although it’s only secondary/metastatic/advanced (breast) cancer that kills… and kills 31 British people (usually women) every day.
One of the things I was challenged to think about by friends who have done similar, was to do something to reflect the 31 women that die every day… and I decided that as last month my daily average for walks was 2.2km per day, I’d try and push that to an average of 3.1km per day for October (which I’m actually finding quite tough, and having to push myself out the door)… today I’m at 3.2km for the last 7 days .. so on track (bearing in mind that if I manage 1km on Monday – treatment day – that’s quite something!)…
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So, a whole week of aiming to get my average daily walk to 3.1km (noting that Monday is treatment day so need bit more other days). 7 days in and exactly 3.1km – thinking of those (like me, one day, average says 3-5 years and I’m already nearly 2) 31 women who die every day in the UK from metastatic/secondary/advanced cancer. #BusyLivingWithMets, #IAmThe31 #DyingForACure. See https://metupuk.org.uk/help-us/ for place to donate @metupukorg
As a group, METUP-UK tries to demonstrate how we are #BusyLivingWithMets, but we are also #Dying4ACure, and need changes in policies and practices, and better research, to give us better odds than a 22% chance of living 5 years after a secondary diagnosis.
You can demonstrate your support for my efforts in this in sharing METUP UK resources amongst friends/family/influencers, or donate to our cause (31p x 31 days = £9.61, if you’re interested in some maths).
Oh – and earlier today, there was a number of people posting #4ForStageIV – four words to sum up Stage IV.
— Dr Bex Lewis #KeepYourDistance (@drbexl) October 9, 2020
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.