Last night I spoke to Stephen Nolan, along with Sara Bainbridge from Macmillan, and fellow cancer patients Lara Montgomery and Nic Murray (we largely spoke in that order, although there’s a bit of interjection), about what it has been like to undergo cancer treatment/progression whilst the pandemic continues, how it has affected diagnostics and treatment, and ultimately, the potential impact upon our prognosis. The interview starts at 31:20, through til 1:00:42 – and although we did it as a pre-record about 45 minutes before the show, it’s largely used ‘as is’.
I’d been contacted Thursday about the potential for this, and was rung around 90 minutes before we recorded by another producer to talk about how I was doing, if I was feeling fit for it, a recognition that it’s a personal topic and might be hard, so the pre-record gives the opportunity to stop and re-set as needed. Really nice to get that reassurance too…
I always do a bit of pre-thinking … things I thought about saying (and as you’ll hear, the questions don’t necessarily go that way – hence why I like to have options):
- Being in NZ for COVID/getting home (and the delays that caused)
- Delays in scans because stuck overseas/non-urgent, pressures on hospitals to take ‘safe’ procedures’ so less people getting stuff
- Not being able to take anyone into appts and being given crap news on your own ..
- The measures hospitals are taking (PPE/limited visitors/ongoing testing) to keep us safe … lots of plastic sheeting everywhere *and yes, I could have mentioned the mask for hospitalisation … !
- The care that staff still give – and the Christie saying not expecting any changes in procedure til Spring earliest.. though get the majority of my treatment at Christie outpost at Stepping Hill Hospital.
- Cold-capped before – not even an option for many now, and psychologically not for me now – so might lose my hair this time
- The suspension of lots of cancer research trials meaning likely to be less options + loss of funding to charities similar impact.
- Within breast cancer around 30% will end up with secondaries – but that only around 12% of research funding goes into targeted treatments (but then other cancers may have even less…) …
- I wanted to get across METUP-UK aims and objectives in some form: METUP-UK – one of patient advocacy groups fighting for better policies around treatment (e.g. NICE says can’t have x treatment if have had y treatment, although may have been proven to work overseas, and could buy someone another 2+ years), better data collection … along with better knowledge of metastatic cancer (people want to skip out of primary treatment believing it’s all done), and support for secondaries patients who can feel written off…… and this was pre-COVID! Do know people whose treatment was suspended and got progression … *could say same with me, but at least I got to go to NZ!
- Support groups such as Stage 4 Deserves More, Make 2nds Count, Secondary1st, and YBCN for inoperable… and hopes for an NIHR bid looking at social media/cancer so people can access better info & interact better…; BRiC Centre – Building Resilience in Breast Cancer Centre – undertaken research demonstrating the mental health impact on women – of delays, lack of scans, etc
- Saw someone else who was advertised as ‘losing their battle’ today – not a fan! It’s ALWAYS in the papers … as #YouMeBigC – another Radio 5 programme did a whole episode on … the metaphors say a lot.. and put a lot of pressure on the individual to be positive, etc..
- The way that the Nolan sisters cancer was reported (they have metastatic, incurable cancer, not ‘spine cancer’ or whatever, and they may get 30+ years, or, the average (recognising averages are a mess) is 2-3 years – with ongoing treatment.
- The poor data collection – so primaries/secondaries not necessarily counted separately.
- The impact of shielding – SD walks for mental health, missing my wild swimming … but people rallying around to deliver things and the joy of zoom etc ..
- Worries that Covid is going to stop seeing people/travel… what happens if I don’t get well – plans for back yard but not same ..
- Missing my cleaner = when energy levels low .. though she is about to restart, with lots of PPE
- Ironically easier to get through to the GP it feels at present with telemedicine, inc a video call – though keen for balance with f2f!
- The distance from family – my mum travelling 5+ hours to come and help out ..
- The challenge of relying on public transport/ambulance service at present … with compromised immune systems (and all those people wearing masks on their chins)
- People not being able to get certain brands or quantities of drugs .. though that may be more Brexit
- Confusion over shielding and being able to work … vulnerability … no clear message
- Some difficulties remain the same … others are unique to Covid!
If you’re looking for my latest cancer update, it’s here.
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.