I last blogged a couple of weeks ago, when I’d been sent home, breathless, without treatment. I had hoped that a treatment break would mean that I felt amazing, but, although my skin has cleared up a lot, and a lot of sensation has returned to my hands/fingers (not all!), mostly I still feel super sleepy/de-energised, and we’re undecided if my breathing is improving…
Really appreciate those who wait for these updates, or send queries without expectation of reply – several days behind on messaging this week .. so here it comes:
Alongside cancer taking over my life, I have managed to do an interview with UCB on cyberbullying, had a welfare chat with work, started experimenting with short opinion videos on Tik-Tok, pre-recorded with The Hopeful Activists (re grief and hope) – which should be out next Friday, had my car serviced, my house alarm serviced, had an overdue opticians appointment (yes, my sight is worse, probably partly due to age, and partly due to chemo!), put away my large COOK delivery (in amongst other house tasks), and had some lovely time with my bubble. I’ve also attended a scarf-tying workshop, listened to a session on ‘Hybrid Church’ hosted by Fidge, and took part in a panel alongside Rev Pam Smith and Rev Dr Pete Phillips – also on ‘Hybrid Church’…. and yeah, am likely spending Christmas in Manchester.
Treatment Date 16?
Last Monday I went back in for treatment, but we knew that if my breathing was still a problem, I’d be sent to see the on-call oncologist. Obviously my COVID test had come back negative, and I exhibit no symptoms anyway, but that had had to be crossed off the list of possibles… Was it going to be treatment 15, delayed, or…
My bloods were taken (as they take at least an hour to process anyway, and if treatment was to go ahead, we wanted to make sure those were done/we had the information). I then went to talk to the oncologist … he said he could see that I was ‘visibly breathless’, and although it could be fatigue from the treatment, something psychosomatic, he wanted to check in case it was a blood clot on the lungs, so said I needed a CT-AP.
Collecting my things, we trotted off to the Ambulatory Care Unit, where I was put into a chair, more questions/forms/people introduced to me (always quite overwhelming), and they said although I have a port in for my bloods, outside of the oncology unit, no one is trained to use them – so a cannula had to go in. I’m SO hard to cannulate – so they sent their top person – after trying on the back of my hand, he got it in on the inside of my wrist (yeah, as uncomfortable as you’d think, spent all afternoon asking how soon it could be taken out!). I was then sent back to the oncology ward to have some more blood taken (from my port), as oncologist wanted to see how fast I’m metabolising my Clexane blood thinners…
Back to the ACU, popped into a different chair (with some lovely NHS soup, sandwiches and ice cream), until the CT scanner was ready for me – the cannula was used to feed the dye into me so they can light up different parts of my body (I know, such a medical explanation!)… before being guided back to the ACU to await the results (and yes, everyone’s on their own, there’s lots of safety procedures before going in/out of different areas of the hospital). Bearing in mind that I got to hospital about 10.30am, it was gone 8pm before the results of the scan came back – I didn’t have a blood clot on my lung ‘so that’s the good news, but you do have some fluid on your lower-left lung’ (pleural effusion).
I recorded this when I got home (and had just climbed the stairs, so my breathing was particularly bad) – before I crashed into bed (the following morning could hear a squeak of protest from my lungs):
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Tuesday was mostly about sleep, housework, watching the webinar, and reality TV:
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Wednesday: The Christie
After much faffing around in the morning, Andrew picked me up to take to the Christie – as I’d sent quite a few challenging questions to my oncologist, and as I can’t take people in, at least I’d have a friendly face (and no need to drive) at the end. A lot of waiting at the Christie – bloods were done fast (and the nurse remembered me from when I’d come in for my new tumour diagnosis in July – once she’d seen past my purple wig)… and then it was all about waiting to speak to the oncologist – appointment was 3.30pm – I think it was gone 5pm by the time I went in (and the waiting room was v empty)!
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Forgot to press record (can be useful when on own and trying to capture notes as well as have a conversation to listen back afterwards – for private use only, obviously!), but we talked through quite a few things (maybe not everything on my list, so I’m trying to talk to nurses to get more of that) but:
- The pleural effusion, on the scans, looks too small to treat (drain or pack) without causing bigger problems – so thinks that the breathlessness is down to toxicity side effects from the paclitaxel…
- Monday: continue with paclitaxel treatment, with a further 10% reduction on the dosage and see how I respond.
- The scan has also shown that the tumours haven’t grown any further (it’s only been about 5 weeks since my last one, although that is enough time for some eager tumours…)
- Whilst my bloods are taken Monday, they’ll take an extra one, and send it off to see if I’m suitable for capecitabine (link to PDF) (commonly known as cape) – a drug that is tablet based (not IV), 2 weeks with tablets, 1 without.
- Some people cope with this really well (onc pulled a face when I said ‘for 5 years, so guessing not expecting it to last that long), fatigue, sore hands/feet, nausea sound like quite common…
- I’ve found it quite funny that lots of people say I look particularly well this last week or so … yes, I’m not having any treatment, so my body may be continuing to eat itself inside! Also, I put makeup on one day!
- If I am suitable for cape, I can choose to start taking it, and see how long it works for – and return to paclitaxel afterwards (as it does seem to be keeping things stable, possibly even shrinking the tumours, though the shrinkage may just be down to radiotherapy). Usually you can’t return to a line of treatment finished – but in this case because we’re taking a break for toxic side effects, and not because the tumour has grown, it remains available as an option.
- I asked about other treatment options beyond this (I have no idea how long any of these treatment options last, but I was due to have paclitaxel for 18 weeks, then ongoing, and have not even completed that). After cape, Eribulin is a possible option, then the ‘platinums‘… but TNBC (triple negative breast cancer) does not have the hugest number of treatment options (or the kindest) – so I will need to keep talking to those in my groups about what other options people have tried (without going down the desperate and weird routes that the vulnerable often seem to attempt).
The last couple of days have been busy, and I’m seeking to chat a bit more with some of the nurses about some of the questions that still feel unanswered. I have oncology ward nurses, Macmillan palliative care nurses, district nurses, specialist secondary breast care nurses at the Christie, the oncologist, the GP, the pharmacy team … lots of people to talk to – though sometimes it feels like you’ve being bounced between them!
If you think that palliative care is all about ‘end of life’, please watch this so you have a better idea. I know that I am being treated with ‘palliative intent’:
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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.