Categories
Media & Press Media - Audio

[MEDIA] Shielded ‘Wellbeing’ with @RevJodyStowell

I was happy to be invited to contribute to Jody’s podcast, around vulnerability in shielding. There are three to listen to before today’s episode (on vulnerability, resilience and weakness), in which Jody and I both share thoughts and reflections on ‘wellbeing’. Can you be both sick and well? Many chronic illnesses (including cancer) are invisible, so we miss what many others are dealing with. Just 15 short minutes here:

Categories
Media & Press Media - Audio

[MEDIA] Conversation with @BeckyWant on @BBCRadioManc re Cancer and COVID (and Week 4 of Treatment)

As you may be aware, including from my BBC Radio 5 and BBC Radio 4 programmes, one of many things that has been disrupted by coronavirus, is cancer treatment – both initial diagnostics, and the ongoing treatment for those of us with incurable cancer …

Breakfast Show, BBC Radio Manchester

Anyway, Friday morning, I was up early to chat to Becky Want (and immediately fell asleep again) at just after 7:10am (go to 1:11, through to around 1:17):

#StageIVNeedsMore

The campaign still seems to be focusing a lot on primary diagnostics, but as you see what my friend Jo has been dealing with:

My Week

Last week I was en route to spend Greenbelt with my bubble family, which we enjoyed, and I got home in time to do ‘beer’ and hymns from bed! Returned on Sunday for ‘The Big Picnic’, which also happened to be 3 years since my first diagnosis of primary breast cancer, added my drawing of ‘dreams‘; and headed for a socially distanced/masked walk with Lee. Monday was bank hols, which I mostly napped and made chocolate mousse... before heading in for treatment on Tuesday:

 

View this post on Instagram

 

Here we are – Paclitaxel No 4. #WaitingRoomFeet #BusyLivingWithMets #StageIVNeedsMore

A post shared by Bex Lewis (@drbexl) on

Onto Wednesday with a bit more sorting and napping (and an unexpected phone check-in from my oncologist, who wants to me to visit for a check-in about 4-weeks), plus a big Zoom-chat, Thursday my cleaner came for the first time since February, and Andrew and Jane came for mousse! Friday/Sat was a little more tidying, another Zoom, and today I’ve mostly been watching ‘Away’, whilst trying to get my head out of it’s fed-up with drifting hair, skin breakouts, stomach malfunctions, never feeling like I have any energy – I really hope this treatment eases over time … not sure that’s a thing though!

Anyway, onto the last episode of ‘Away’ … and it’s treatment time again tomorrow…

Categories
Cancer Media & Press Media - Audio

[CANCER/MEDIA] Talking with @Sarah_Montague on @BBCWorldatOne on @BBCRadio4

This morning I was rung by the production team from World at One, on BBC Radio 4, who had heard my BBC Radio 5 Live piece, and wanted to run something similar. There is a lot of rumbling about the number of people who have missed diagnoses (anticipated 18,000-35,000), and how those with ongoing treatment (such as me) have been affected by COVID and its impact upon health services. (Listen here; Audio file)

There’s a brief segment at 25 seconds into the programme (talking about lights off in MCRC), but the main segment is at 31:25 minutes in to 40:32. I’d had a 25 minute chat with the producer, and then around 15 minutes of recording with Sarah pre-programme – and they have left an amazing amount of what I said in in the edits … we’d also talked about what going into treatment was like (the plastic sheeting, etc), the impact upon prognosis, and the joy of having a bubble family, some digital connections.

  • 18,000+ missed cancer diagnoses says DATA-CAN
  • Impact of being in New Zealand, getting home, waiting for scans
  • Instead of 3 monthly scans, waiting 6 weeks for scan/2 for results (hospitalised)
  • Not cold-capping partly because can’t take anyone to distract me
  • Not having friends popping round, although mental health walks important.
  • Stopping of research trials, less money £ to cancer charities, less trials
  • METUP-UK Aims beyond the ‘pink and fluffy’

*and if you can hear me sniff, sorry, that’s a side-effect of my treatment, get a bloody nose.

They then spoke to Sara Hyam from Cancer Research UK about what is needed from the NHS to be able to catch up (which needs to be over 100%) and the numbers missed from tests and referrals. 120-180% of current capacity needed, anticipating Sept-Oct peak in demand for treatment as diagnostic services recover. And we need the lights back on in the research centres…

All of this on the day that Sarah Harding (singer with Girls Aloud) announced that she has ‘advanced breast cancer’ (struggling a bit with the ‘fight’ language, and people telling her that by ‘being positive’ she can beat it – that’s not how it works) – anyway – prayers with Sarah that she’s got a good team around her, and people to talk to:

Categories
Cancer Media & Press Media - Audio

[CANCER/MEDIA] Talking with @StephenNolan, @SaraBainbridge, @NicMurray & @larba74 about Cancer and COVID.

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.

Categories
Media & Press Media - Audio

[MEDIA] ‘Jesus Tok’: Kanye West seeks to launch Christian TikTok after being ‘disturbed’ by videos on @PremierRadio

Yes, I may have had chemo yesterday, but was pleased to be given the opportunity to comment on this story around Kanye West and Tik-Tok this morning. An extract from what I said:

In response to Kanye’s announcement, Bex Lewis, Digital Marketing lecturer at Manchester Metropolitan University told Premier Christian News: “There’s always someone trying to make a Christian version of something. And I don’t think it really works.

“I think it kind of sends us off into a separate space in the world rather than changing the world as a whole. And, you know, we’ve had people try and set up GodTube, and things like that instead of YouTube. I’m much more interested in being salt and light in the real spaces that people are actually using.

Read full story (and/or listen to audio)