So, if it hadn’t been a bank holiday yesterday, I would have had chemotherapy (+ immunotherapy + targeted therapy) yesterday, but all the appointments have been spread out over today and tomorrow – so the steroids are building up in my body tonight, and it’s an early start/long day tomorrow.
Last time there was an observation period of 6 hours post treatment, I think tomorrow is 3 hours post treatment, any after this have no observation period. I went for bloods today so tomorrow can go straight in and get plugged in to the treatment and get home before crazy traffic!
Tomorrow I will need to talk them through the side effects, and see if any can be better managed. Probably should have kept a diary of everything – though there’s quite a bit on Instagram – I did last time, been a bit blase and just living with it all this time!
- Bloody, ‘productive’ nose from the first evening which hasn’t really gone (stocks in tissue companies required)
- Ongoing fatigue – limited energy // short awake days // insomnia – sleeping tablets (‘hangover’ day after, so I’ve tried without last week) …
- Steroid ‘rosiness’ (with extra insomnia/appetite)
- Muscle aches particularly couple of days post chemo, probably from the filgrastim injections, which are producing white blood cells to try and keep me out of hospital with neutropenia…. still first ‘go down stairs’ of each day tends to be a bit sideways!
- Loss of taste – mouth, as a friend described it, feels like have ‘drunk a pond’ … that’s been coming and going, but thankfully got most back this past week; much mouthwash to try and prevent mouth ulcers
- Itchy rash on arm, armpit, scalp, (that’s going to pull fragile hairs out aside from anything else), acne – Pliazon Cream has been given today to slap on tonight.
- Stomach having a party at random moments (especially around day 9)
- Skin drying out (Aveeno slapped on), and soles of feet burning somewhat (just because I’ve been walking, maybe?)
Over the past few weeks I also appear to be becoming allergic to (some?) plasters…
With primary treatment, there seems to be a certain expectation that you chuck everything to one side, and concentrate on treatment. With secondary treatment, as this is now it for life (and 30% of people likely to end up with secondaries, some ‘de novo’ (on first diagnosis)) there’s a lot more concern with ensuring that quality of life is good..
The big one was making it to London, meeting up with Andy, spending the weekend with a wonderful friend and her family – including her 10 year old, and my 6-year old god-daughter, and the tickets for Hamilton that Hannah and I had booked as a celebration of having finished cancer treatment:
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and even walked back from the Tube past lovely London skylines, before making it to the Exploring Belief conference the next day (well, for part of the afternoon):
Even managing an afternoon with Erika on the Wednesday:
Also out on Saturday with some of the #abcdiagnosis crew:
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So otherwise, other than having gone back to work (working from home) on 24th:
- Having a go at jigsaws (I’m a bit stuck on the middle bit – I’m good at starting and finishing things, get a bit bogged down in the middle!) – and Wonka’s World.
- Watching Easter happen online (as unable to do anything in person)
- Getting out for walks (inc Pokewalks)
- Visits from friends, such as Natalie, Yee Gan/Emma, and Isabelle
- Made it into work for about 2 hours, for a meeting about research funding
- Posting a range of stuff online, including body posi stuff
- Bits of cooking … though Harissa on a messed up stomach probably not best idea … especially not the day before counselling #waitingroomfeet! Jersey potatoes and pasta dishes…
- Made it to a dance class at the gym – it’s gentle and I know it pretty well so can keep it limited…
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.