Well here we are, November… and the focus for cancer awareness moves to lung and pancreatic cancers … basically we hate all cancers, right. I know we’ve all got to die at some point, but it would be great if we weren’t tipped into an early grave by cancer (and other illnesses) – and also that we wouldn’t have to live with the crappy side effects.
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This past month has been a busy one with the focus on Breast Cancer Awareness (although we are still super sad that only October 13th is a day for metastatic breast cancer (the type that actually kills). I have been involved with conversations with METUP-UK for the past few months, and a couple of months ago, agreed to take responsibility for shaping a social media policy (though not doing all the social media) and a blog strategy.
Emma, who works in digital marketing, had come up with the idea of the #IAmThe31 campaign, with a video featuring those of us living with metastatic breast cancer (of which 31 people will die of this every day in the UK, including 6 men per month)… as we try and get across the urgency and realism of our situation (not enough research, poor government policies, limited education about metastatic cancer) – we’re not trying to be negative, but we’re ‘fighting for our lives’ (not against the cancer itself, but against the systemic problems – which could be changed!)
It’s a real challenge, as even the breast cancer charities don’t seem to want to talk about secondary cancer much – it’s all about early detection… *see Tassia’s cartoon in featured image.
Walking 3.1km Average
I said that I was aiming to walk 3.1km+ average per day across October, to raise awareness and funds for METUPUK: super thankful to those of you who have cheered me on, shared information, and donated funds. As someone who used to do 8-10 mile hikes at the weekend, after a full week of week (where had cycled 6 miles each way to/from work) it didn’t seem that far. With ongoing chemotherapy, radiotherapy tiredness, and just a body and brain battered by 3+ years of treatment, it was actually quite a challenge – but I did it!
I am going to maintain my walking, but maybe not trying to catch up from e.g. treatment day! And of course, just because breast cancer month is over, doesn’t mean that we can forget about this … I and my friends have to live with this every day, and far too frequently see our friends dying of it (especially frustrating when treatments are available but not funded, etc.).
Of course, within all this, we’re continuing to seek to be #BusyLivingWithMets… now when/where can I next find an opportunity for wild swimming?!
Andrew Gwynne, MP
I was incredibly grateful to my own MP who shared information about our campaign across his social media:
This Week’s Side Effects
I wrote last week about the overall side effects (and the fact that the treatment is shrinking the tumours), and this week in many ways it’s much the same.
- Brain still mulling over the phrase from oncologist that ‘we continue with this treatment until the toxicity effects get too much’, although we can reduce the dose (safely, apparently). I’m already on second line treatment (primary doesn’t count, I don’t think, otherwise I’m on 3rd!) – and it’s rare to hear of people on line 7-8 of treatment (a line being a particular set of treatments administered, not including radiotherapy).
- Having a lot of, ahem, fun, trying to work out how much lactulose is needed …!
- Most of last week I was still awake til 5/6am in the morning, then the last 3 nights (with a little help from zopiclone) I’ve slept around 12 hours per night! Still feeling really dopey all day so not getting much done… *reminder from counsellor AGAIN – you are ‘off sick’ and not ‘on sabbatical’ … still got things I want to do!
- I don’t think the fluff on my head has grown at all … and my eyes are getting more and more watery as eyelashes disappear.
- Naseptin is really helping my nose/bleeds – I’ve got an ENT appointment (for late December) – my voice still sounds like I have laryngitis.
- Peripheral neuropathy is really making itself felt – I had lost sensation is my right fingers from tumour pressing on a nerve, that had improved, but now both hands feel numb/tingly … may make me a bit clumsy – and my touch typing may be a *little off!
As we head into a deeper lockdown (doesn’t seem to make that much difference to my life to-be-honest, though still hoping people can come and join me in my back yard before too many more weeks!), wait for the impact of Brexit (and hope that Trump gets toppled this week) – I have an app called ‘3 good things‘ that I use last thing at night to remind me that however dark things get, there’s always something to be thankful for (even if it’s that I’m still breathing, or that the rain wasn’t TOO heavy today, etc.). I am not overthinking this – and doubtless will think of many other things later:
- Living near The Christie, with a good team that seem to look out for me.
- Having a permanent job which is still providing me with sick pay (til early Jan) – and decent colleagues.
- Being able to go to The Laurel Suite, Stepping Hill Hospital for treatment, where the staff are wonderful and know me well.. and seem keen to manage my side effects.
- Having a wonderful set of friends on/offline (most in a blend!) who send me encouraging messages – online and in the post – and don’t put too much pressure on me
- Being able to ‘bubble’ with the Graystones – and our joy at going for a bacon buttie at Abney Hall!
- My lovely cleaner Julie who comes fortnightly … and also changes my sheets (a job I find surprisingly exhausting).
- The power of Zoom (etc) – for connecting with family, friends and church – and online events – esp as my family all lives 4+ hours away!
- Getting to know the METUP-UK, YBCN, Stage IV Needs More, BRIC, gangs – supporting each other in up/down times.
- Having the £ (earnt/gifts) which means that my house is pretty much done (great, as spending so much time in it), a comfy bed, useable technology, a car (though anyone else getting 3 months to the gallon?!), warm fireplace
- Still decent content on TV through Netflix, BBC, Channel 4, etc…
- Digital tools such as to-do-list (so I can remember all my meds), games (relaxation), and for connection, etc.
Featured image cartoon by Tassia Haines.
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.