Another week has passed since I last blogged about treatment – and I guess this is going to start getting repetitive, but at the moment, things are still changing… if more slowly!
Gentle days – Friday/Saturday felt like all the energy had leached out of my body (that may be the sudden drop off from steroids) – with gentle walks and chats with friends (and my Power of Attorney paperwork finally turned up).
After joining Inspire Church in the morning, afternoon was a bit of bobbing around and reading, before a chat with Stuart about funerals (we did that for about 40 mins, then another 90 mins with Karen of regular chat)… to look at G Burdett funerals, and I’m interested in Adlington Memorial Park for burial (if it’s not too far from everyone) – to add to my previous thinking (so songs are pretty sorted) – haven’t really thought of readings I might like, so keeping an ear out for things I love.
I was then joined by Andrew and Jane for a short walk/some food:
The excitement of being back in my own car for the first time since before my hospital admission! And the destination…. Stepping Hill Hospital for Paclitaxel number 2/18 (possibly ongoing, depending on if scans show that the drug is working – which is the best outcome – otherwise we need to try and find another treatment which might/not work).
After waiting around 15 mins in car for chair to come clear, treatment largely followed the plan of last week – less conversation (we’d done most of that, but they were also a nurse down) – but we talked about the side effects that are starting to emerge. Side effects – many of them are ‘small’ and ‘irritating’, but ‘ever-present’ …. we talked fatigue, mouth changes, nausea, stomach changes, serious heartburn, peripheral neuropathy, skin outbreaks, skin fungal infections – all super glamorous – but they are interested in managing whatever they can – although often once you give one drug to manage a side-effect, then another side-effect pops out … so we’re trying antihistamines for the skin this week, but suspect we’ll be back on doxycycline (antibiotic) to try and manage the ‘tax rash’.
- Obs done, blood pressure a little low, so rechecked before treatment … raised enough …
- Bloods went off, came back around an hour later – apparently my liver is a little high, but still within a range, but to be monitored.
- I told people I’d been given Ritalin (an ADHD drug), but I think it’s Ranitidine – via infusion (rather than a tablet form), to try and help deal with serious heartburn (which kicked off the first day).
- An hour to infuse the main drugs, and just 15 mins afterwards – so I’m in the hospital for around 4+ hours … but plenty to keep me occupied on my iPad (if I was working, I could easily work there, but letting myself watch some mindless films!)
Normally around this time of year I would head off to Jersey for a holiday – thankful to receive a parcel of Jersey goodies to get the tastes of it, even if I can’t get the landscape, beaches, people and food there! And got to chat to Hannah and Rose who are there…
The antihistamines and the morphine gave me a good sleep, and I woke up feeling pretty normal for the morning.. and even had the brain space to do an interview about Kanye West wanting to create a ‘Jesus TikTok’. I then hit a bit of a wall, and sat and tidied up my Pokemon Go deck – evolving a few creatures that had been sat waiting for time! Had another visit from Macmillan nurse – as adjust to current circumstances – will see her again in a fortnight (and think district nurse is coming Friday … excitement from her – have I got an ingrowing toe-nail coming … and does the fact that my body has less resistance to infection make that worse)…
Enjoyed joining my Durham housegroup via Zoom for a social in the evening… after I had sorted out the bins/flowers and something SMELT (I think it was the flower water)
Another good sleep, thankfully.
Had been excited about my cleaner coming back this week, but she’s unwell, so we’ll have to wait another couple of weeks til she comes back. My house is still reasonably clean after my mum did so much sorting to it, but I knew my sheets really need changing (a job I find a challenge!) – so thankful to Jane who popped round, did my bed, enjoyed a cheese toastie, a good chat, and a short walk!
I did empty the dishwasher, and put my washing away, plus start to make a dent in a few emails, and tidy the desk, and those kind of life admin type things … plus finished reading Christy Harrison’s ‘Anti-Diet‘!
Yeah, last night I just wanted to make sure I slept – so Zopiclone again! And it worked…
Another slowish day sorting out more bits and pieces of life admin, emails (still not got to the bottom), doing some stuff for MetUp-UK, nearly falling over at a nearly £4000 quote for patio awning, contacting the funeral people, joined Manchester Maggies online group that’s just getting going for ‘younger women with cancer’, and going for a v short walk (feeling bit nauseous this afternoon):
Good news: insurance has paid all my New Zealand medical costs today 🙂
Wonders if the fact that my little finger seems to have some sensation back in it, means the chemo is working, and start to deal with the trapped (cancerous?) lymph node in my armpit… rest of fingers in right hand still quite numb … which as a right-hander is quite a pain!
The next week brings conversations with people at work, I want to organise some more chats/walks with people, and my next #BexParties – this week hope was that I would get funeral stuff close to finish, and then maybe I can start to think about working on my book (which was due end of July) – if I could manage an hour or two a day that would be ace! Otherwise, largely having to live day-to-day…. though I might be BBC Radio 5 Live talking cancer/COVID Saturday evening…
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.