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:

 

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Another #waitingroomfeet day. Waiting to see oncologist and find how many more #docetaxol I have to have. Had some proper food and with cleaner away, washing own sheets … #busylivingwithmets

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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 …

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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

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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.

Today’s Discussions

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).

More #WaitingRoomFeet?

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’.

Photo by Claudia Soraya on Unsplash

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