In a week when all the Facebook ‘your last 365 days’ (ahem, the year hasn’t finished yet) videos are circulating, it’s noticeable that sometimes the cheerful and congratulatory tone of social media doesn’t quite work! This Swarm check-in from today cheerfully tells me that I’ve been in hospitals for at least ‘3 straight weeks’, yeah cheers – I know that this time last week I was home from my first EC-Chemotherapy session! I can live with that, because the team at the Christie are all very friendly and professional, and they’re just interested in getting us ‘out the other side’ as painlessly as possible.
The weekend I wrote about in the last blog post, and was mostly riding the wave of steroid highs, with very little sleep, but the nausea largely managed (Emend, Ondansetron, Dexamethasone, and optional Metoclopramide) after the first night, and with the fun of learning to take my own filgrastim (and yes, that’s a pile of breast cancer literature in the background), which I’ll have to take for 7 days after each of the three cycles of ‘EC’ – leaving stomach covered in mini bruises: Monday/Tuesday
The steroids had finished, the nausea persisted, but at a low level. Grateful for friends that are visiting/checking in on me, making me laugh amongst the random tears. Talked to the chemo line/dr, mouth gone, and yes, the anti-sickness meds had the expected side effects so time for Lactulose – hurrah! Not glamorous this malarky is it …
Meantime, my house is slowly stockpiling various ginger/anti-sickness remedies from friends…
Edited to note foods managed: chicken/veg soups, toast (white, multi-seed, sourdough), pre and eventually own made smoothies, savoury snack food that didn’t require prep/washing up , lots of water (2l bottles kept next to bed along with a glass + kept refilling glass downstairs), banana, Orange lucozade, dry crackers, aside from wine gums and occasional Maom didn’t really want anything sweet, meat/potato from a roast dinner, baked potato – didn’t really want anything sweet except ginger biscuits/suckable sweets to ease mouth/sore throat, or anything too rich! Once final nausea wears off have some lovely Cooknet meals in the freezer….
On Wednesday, I took a turn for the worse (although I managed to do a radio interview on the new Facebook Messenger for Kids, which should be live at the weekend), rather than the hoped-for ‘let’s wake up and get on with life’! Nausea worse, fatigue worse, wobbled around the block on my ‘daily walk’, definitely not driving again yet. GP came out to check a few symptoms after another call to the 24-hour chemo hotline, but was happy with all the numbers, and said talk to the oncologist before the next chemo to discuss possible other drugs – but rest (ah yeah, I’m so, erm, not good at that!). A friend staying with me wrapped up all the piles of parcels I had lying around to post to extended family whilst I watched the first episode of The Marvellous Mrs Maisel (I’m ready for the next episode, but not quite what I expected!), and continued with plans to eat little/often, rest, move around a bit, sleep as much as possible (Boots sleeping tabs, thank you!)… before an evening continuing to watch episodes of Once Upon a Time, although Audible books are easier to manage in terms of concentration!
This morning, I rang the chemo line again, checking as the nausea still not subsided, encouragement from others in Facebook groups that Drs have other drugs in the box, my belly button was bright red, weird aches and pains (probably from body trying to cope with the attack upon it/create new blood cells) – and I was coming in to have the stitch removed from my portcath anyway! As I was still wobbly, a friend drove me as I was asked to go to ‘Dept 25’ – lovely nurses, Dr – they decided they needed blood tests, though temp/blood pressure good, so rather than a quick appointment, I was in the hospital for 3 hours with a 50% chance of being admitted for further observations.
It was helpful to have more conversations about what is to be expected, what can be tried differently next time (tapering off steroids, different anti-sickness meds – going to try Cyclizine instead of Metoclopramide), as it’s always good to know when to ‘worry’, and what’s just normal – but the hospital prefers that the chemo line is rung, ‘however daft it may seem’, as things can be dealt with at an earlier stage. Although the treatments are ‘cumulative’, so I’ll get more fatigued as the treatment goes on, but the body will get more used to dealing with the shock of the toxic drugs and the nausea will hopefully become easier to manage… Excellent, because the next treatment period takes me right over Christmas .. but maybe well enough beforehand for work-team dinner, and in time for New Year Party – and panto tickets that were booked ages ago! Thankfully the bloods came back OK (although further swabs, etc will take 48 hours to clear), so after snipping out the stitch (which needed photographing for hospital records), and removing all the dressings, etc. from the port (vampires, not sure there’s much left for you!), it’s confirmed don’t need to stay in, but keep monitoring temperature, anything unusual, etc…
It feels like it’s going to be a long few months, but we’re already one treatment down… I’m still having serious doubts about the cold-capping (the pain, the time it takes, hair still looks crap, maybe bald will be easier to cope with … though if we go for the shave, wine and a Chinese apparently helps this to happen!)! This was me earlier today, after 3 hours of various tests and conversations at the hospital (the staff are all great, by the way!), finally headinghome:
So, on with ‘a few days in the life of a breast cancer patient’ … forward … to bed (if the (bone?) pain subsides)!
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.