So, it’s been another #waitingroomfeet day, as it was time for a review with my oncologist, to see how I’m getting on with treatment:
After a bit of discussion as to how I’ve been getting on … the numerous side-effects that are just making life hard/tedious/hardwork… Despite having made it to a gym class the day after chemotherapy (whilst still high on steroids), I have since found things hard work – with ongoing bloody nose, exploding face, fatigue, sleep interruptions (though sleeping tablets have their place), loss of taste, D&V, low energy, brain fog, etc… I HAVE made it out each day to one of the nearest Pokestops (around 1km round trip), but at least a couple of days that was in my PJS, very much unwashed, and not really with it:
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Very Bloody nose, flaring skin – acne/rash, low energy, brain fog, vomiting, stomach on fast, mouth like pond slime… Who said Instagram has to be about perfection? #whatcancerlookslike #chemotherapy #thankful4Zopiclone. BUT brain feels a little brighter this morning so hopefully on the up/out …
About 8-9 days after chemotherapy my brain started to work again, which I am super-thankful for, as that is the thing I most fear losing any control over:
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Around about Weds evening my brain started to resurface… bloody nose and acne continues, fatigue and breathlessness. #whatcancerlookslike. Working from home last 2 days have been interviewed by The Times, read/marked student work, done a Skype phd supervision, emptied my emails.. and just been to @dunelmuk to swap the broken frame where the staff who had to sign off the exchange was ‘quite impolite’ … food still all tastes a bit nothing so trying chip shop chips & the TV! #chemotherapy #boringlifeupdates
I’ve managed, despite appearances, I think, to slow down a little more this chemo, whilst continuing to ditch a few more things from my house, and going ‘back to work’ (from home) last Thursday, I’ve watched the whole of Schitt’s Creek, a season of Humans – so far, and the whole first season of Dead to Me, along with a few other bits and pieces, some computer games, some jigsawing!
The blistering face has been one of the hardest things to deal with, until someone in YBCN yesterday suggested Nasceptin (which I was given last time), and Germolene, along with remembering to take my anti-histamines.
- Anything up to 6 docetaxol is standard first line treatment to combine with Herceptin and Perjeta, but as I’ve had a lot of chemotherapy over the past 18 months, and it’s one small met which has been treated with stereotactic radiotherapy; I will be having the Herceptin and Perjeta by infusion every three weeks for life (unless it stops working, in which case we’ll have to try something else) but had to be started with the (decidedly toxic) docetaxol. As I’m finding it quite tough, we discussed whether to stop the docetaxol now, but agreed to continue with the next round as planned next Tuesday…
- I asked when next scans would be, but he said that’s for discussion with Dr Colaco on Wednesday (who’d said 3 months after the radiotherapy – and we’re only about 6 weeks), and that’ll be the next one.
- I start bisphosphonates (bone strengthener) after I’ve had a 2 cycle gap from the docetaxol, and will have that every 6 weeks, also for life. It’ll be added onto alternate infusions I’ll already be having (so less hospital appointments overall). With my maths I make that 29th July … the first one is supposed to give horrendous flu-like effects for a few days, so we’ll see.
- Once the docetaxol has finished, we’ll restart the Zoladex and Exemestane again, although this may be a temporary measure. A referral is being made to the gynae clinic to discuss the possibility of an oompherectomy (which would maybe be September?)
- I’ll have another review on 17th June with the oncologist, which is also the next day for IV infusion (chemo ward said probably only a couple of hours for that treatment, not sure if any of the side effects continue, but the worst shouldn’t!).
Also, I’ve always wanted to apply for this writing scholarship in New Zealand, my Head of Faculty encouraged me to give it a go, and the oncologist said yes, something should be able to be sorted out (it’s 2 months overseas, so somehow I’d have to get my infusions abroad).
I’ve two more appointments this week, counselling tomorrow, and Dr Coloco on Wednesday (which I assume is to check how I’m feeling after radiotherapy, and to arrange the scan). Looking forward to going to MPA Thrive on Thursday (though I won’t be making the crack of dawn start!)
Work, Work, Work
At times I’ve wondered why I push so hard to keep working, but I’m being given space to work on the work that feels meaningful for me, and things I want to get done, so been trying to keep on top of emails, MSc and PhD marking/feedback, and working on this piece of work for an academic journal (rough abstract):
Finding a Voice: An Auto-Ethnography of Cancer in a Digital Age
This auto-ethnographic paper illustrates the experience of a digitally literate scholar undergoing first primary breast cancer treatment, and then treatment for metastatic spinal cancer. Social media is now a part of everyday life, with 77% of UK internet users having at least one account, and 91% of those having a Facebook account (Ofcom, 2018). As one of the estimated 2.5 million people living with cancer in the UK (Macmillan, 2017), the author, with over twenty years online, naturally sought to use digital tools, has blogged regularly since diagnosis in August 2017, and is a regular participant in social media spaces. The internet is seen as a ‘dangerous place’ by the media (Lewis, 2014), and full of ‘misinformation’ (Macmillan, 2017), a perspective that the author sought to consciously disrupt. Large numbers of people look for support and information online, including through peer-to-peer social network spaces (Bath, 2017, Baucom, 2017, James, 2014, Pietrangelo, 2017), and this paper offers empirical insights into the therapeutic impact gained from participating online.
In a pre-digital age authors such as Frank (1997) and Conway (1996) used storytelling to recount the disruptive experience of cancer, both physical and emotional, and how it reshaped the sense of self. This paper reflects upon participation within digital spaces, the importance of understanding the diversity of the different spaces, especially amongst public and private spaces. In telling the story of ‘the self’ throughout the cancer experience, we identify efforts to be ‘authentic’ and ‘real’ online, within spaces that remain mediated, recognising that there’s not one right way for everyone to use social media. Distinguishing between ‘disease’ (medical) and ‘illness’ (subjective experience), the paper considers the sharing of knowledge and information, but also the psychosocial benefits of being part of a conversation that is currently growing. The paper will contribute to an understanding of how patients use digital spaces as part of the ‘cancer experience’.
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.