I only blogged on Wednesday, but still… got a few things to catch people up on. I had a 10% dose reduction last week, to try and deal with my peripheral neuropathy … and I do feel that although still shattered (and managing to engage with PremDAC20 for most of the day on Saturday), I’ve felt a bit more ‘with it’ this week, my raw skin has healed over and now mostly seems to need moisturiser, and even my fingertips have got some (limited) sensation back. So, off I popped to treatment this morning!
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Not having treatment is one of the things that you (weirdly) have to get your head around as a cancer patient. It was a busy morning this morning – waited 40 minutes in the car before able to come in for my pre-treatment obs, then around 40 minutes before we did my toxicity discussion/took bloods… Last week I’d mentioned that I was a little ‘breathy’ and not sure whether it was psychosomatic in some way, or – of course – my tumours are near my lungs – and if put ‘breathlessness’ and ‘mets’ into Google – lung mets is the first thing that comes up as a suggestion… but also – it was breathlessness (AND puffiness, which I don’t (think) I have that got me admitted to hospital last time.
Anyway, on my ‘obs’, my oxygen saturation was 98% (v. good), my blood pressure (as ever) was pretty low, heart rate a bit high – but we did discuss that all I’d done was walk from the disabled car park into the hospital, and I was quite puffed, wheezy, and struggling to catch my breath a little – had noted this yesterday when Andrew and Jane were around… We decided we’d take my bloods (as ever) to find out if there was anything in there, and they also called on Kevin, the acute oncology nurse (who I’d seen, but not met properly), and I got on with tapping away on the laptop. Kevin arrived before my bloods came back, and we had quite a chat about what might be going on (could include anxiety, could be my body is just exhausted from week-in-week-out treatment – esp when trying to have a life too), tested my lungs with the stethoscope, had to say ‘ahhhhh’ for throat – and all of this came back as ‘good, no crackles, don’t think it’s lung related’. He’d had a look at my recent CT scan (only a month ago) and said tumour has been reducing rather than growing, and would cause a lot more pain/other symptoms if something was happening on that … and had I noticed any facial puffiness like last time!?
So, the decision is, that we keep an eye on me – and not to wait for next Monday if something gets worse – that’s what the ‘chemo hotline’ is for, and/or the GP, or ringing the Laurel Suite – even when it’s not treatment day! Will get the Macmillan Nurse to check on Wednesday and see if same/worse, etc. My bloods were then looked at extra closely when they came back, and I noticed one of the nurses having a chat/disappearing … she came over to say that she’d talked to the on-call oncologist, and he’s not concerned about my bloods (all the ‘big ones’ are fine, but protein and albumen have dropped a lot since last week), but once he’d been told about the breathlessness and that we’d already been talking about whether it was time for a mini-break (week or two from treatment) – he said, don’t treat this week, in case ‘something is brewing’ – give body chance to recover. We then ended up having a chat about whether any chance it could be COVID (hope not, as been on the ward for about 4+ hours by this point) – see below for that decision…
Shine Cancer Care: Conference
Shine Cancer Care deals with those with cancer in 20s-40s, and they typically do a weekend away. Like everything else, it has had to go online …
Yesterday, I joined a session on ‘self-care’ which was a great reminder not to make this into something else we can fail at, and to find the things that work for us – with Jo Castro. Nicely paced, and a chance to chat with others in breakout sessions… There was an encouragement to think about all 8 areas of our life, and what small changes we can try that work for us (very Beyond Chocolate!)
Today, I had planned to put my headphones in and listen on the ward if necessary, but as I got sent home, I managed to join the session on ‘Living Well with Incurable Cancer’ just in time (which was actually on palliative care – interesting – because I know a lot of people run away from this term – the Breast Cancer Now session I went to on ‘palliative care’ had a really small number of people attend). Found it a really helpful, insightful and well paced session with Jonathan Koffman, and well-faciliated for the Q&A by the Shine rep.
I managed to miss the session on travel insurance with cancer, but think can watch later, and have a session on headscarf tying on Thursday.
So, although I have no symptoms (aside from the cough I have had for 10+ years, which was always going to be made worse by my breathing), we decided that it’s worth ruling out COVID – I’ve not had a test for about 3 months so … went onto the Test & Trace app to book a test (hospital not set up for fast testing) – and was REALLY shocked to find it saying I ‘still have 3 days to self-isolate’. If this app does not notify on the device (yes, notifications all turned on), doesn’t send a text or an email, which surely it should have done 11 days ago – then it’s failing in its basic purpose. People only use the app to check in, surely – and I haven’t really been anywhere but hospital and home so don’t need it for that..
Anyway, decided to book in for the test, triggered it by saying had a cough … nearest drive-through was at the Manchester City football ground (parking lot) – furthest I’ve been from home for WEEKS – how exciting! The testing site was clearly signposted (and the postcode went to exactly the right place, phew) – lots of cones and bright white lights everywhere … instructions to keep your windows up/closed (there had also been instructions on the booking system, which was really easy/loads of availability – just needed to print off a generated QR code/take passport/hand sanitiser/mask). Showed the QR code at various points, and got waved in for what felt like best part of a kilometre. Lots of signage/white tents, but very few other cars. Was asked if happy to do own test – waved through a ‘self-test’ area, asked to ring a mobile number that was put to the car window – which connected me to the person holding the sign – asked questions – including ‘do you have a tissue to blow your nose before the test’ (well, that wasn’t on the pre-instructions), and then a test kit was passed through the smallest gap I could make in the passenger window.
Then drove another (decent) distance, parked, was told to turn lights off, and flash lights if damaged the swab or got stuck in some way, and put lights on when ready to go. Lots of instructions, think followed them OK – had to show unsealed bio-bag before sealing and exiting. They didn’t seem to be paying attention to lights on, so put window down – then we had to wait til they saw me and told me to put it up again … then drove out where QR code and biobag barcode were scanned, opened window tiny bit, chucked test into a blue bin (lined with a plastic bag) … and apparently I might hear in 48 hours, or might be 5 days. Guess I better change my sight test from Weds then…
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So, despite the fact that I’ve not had treatment, emotionally quite shattered, not got much else done today – so had my pizza (mmm) and time for PJs and The Crown! Wasn’t going to write this, then easier than trying to explain in multiple FB comments/messages…
(added the following day: the COVID test came back as negative the following morning, it seems to indicate that you can get back on with life ‘as usual’ (as it is these days) – EXCEPT (and I don’t find this clear) if the app has told you to self-isolate – because of the danger of false positives. I have a friend who says they turn the app off for when in hospital, because invariably it will pick up someone because of the volume of people…?!)
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.