Like many, I’m looking forward to time moving forward, and hopefully emerging (once vaccinated) into some kind of resemblances of a more liveable life. Having been taught that time is a social construct, I don’t expect things to change on the stroke of midnight however (it’s also one of the reasons I’ve never done New Year’s Resolutions – also, they are set up to fail, and if I want to try something new, I’ll do it when I’m ready, not when the clock dictates). Maybe that’s why I was pretty relaxed about Christmas this year (as 2/3 previous year’s Christmas have been messed up by cancer, so…)
A Cancer Update
I last blogged maybe 3 weeks ago (though feels like months ago).
- I had another paclitaxel (reduced dose) treatment, number 17/18, then had a week off for Christmas (nice to have a week without some of the side effects, though fatigue doesn’t really go anywhere).
- I’ve spoken to my counsellor at the Christies, my Macmillan nurse, and joined the Maggies Young Women’s group.
- I’ve spoken to the ENT specialist re bloody noses – the Naseptin seems to be doing its job and now leaving paclitaxel, may no longer be a problem.
- I’ve spoken to Occupational Health and various people at work, more about that will emerge… (prayers particularly appreciated)
- I’ve had an echocardiogram, and my heart seems to be working OK (drugs I’ve been on could have damaged it)
This week’s fun
This Tuesday I headed to the Laurel Suite to have treatment number 18, but had to report that puffiness and breathlessness in my body had been getting worse since around Christmas Eve (though already noticeable for a few weeks), although my face had not swollen (like in July). Although I chucked my scales out years ago for the sake of my mental health, I get weighed every time so the right dosage can be dispensed… and along with going up around 1kg per week for previous 5-6 weeks, this time 5kg in 2 weeks … I don’t do the whole Christmas ‘eat yourself sick’ so it’s fluid weight that is going on. Again, after conversations with the acute oncology nurse, and an on-call oncologist (both via phone), with concerns that it could be a blood clot (though unlikely because of blood thinners), or a tumour growth/obstruction, I was sent to ACU to await more tests. And again, they can’t use my port, so, once I’d had an x-ray (to see what pleural effusion is up to) and they decided I needed a CT scan, after 6 attempts, cannula got in (yes, I cried, though once in, much less painful that previous ones – they’ve decided they can use my left arm now). Thankfully the CT scan ended up being the last one of the day, and the radiographer wanted to get home, so wrote the report up swiftly. I was in the Laurel Suite 11-2.30, then on the ACU til gone 9pm – very tired:
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The results came back as not a clot, and not a tumour growth – so – and this is basically the scan I was due to have on 9th has now been done – I guess we can say I’m a ‘stable mable’ (which I should probably be a lot more excited about than I am – as one of my nurses said, I’ve had so many side effect problems, I don’t really believe it). It is thought that I now have lymphedema in my right arm (whereas my left arm – where all lymph nodes removed – has recovered from this entirely), and across my chest – quite uncomfortable, but need to work on massaging the fluid back into where it’s supposed to be. I emailed my Secondary Breast Care Nurse (SBCN) yesterday to update, as she can liaise with my oncologist (who hopefully I will speak to soon), and she has now already referred me to the lymphedema service!
The decision is to abandon the 18th paclitaxel – officially I guess it still sits on the list of drugs I could return to, but it’s given my body a complete hammering. I will go back onto the oncology ward on Monday and consent to starting capecitabine (usually have to accept that death is a possible side effect of the drugs), have bloods taken, chat to pharmacist, then be sent home with tablet chemo. Should my body be OK with the drug (and I’ve had a DYPD test, which identifies those with terrible responses, and mine are fine), then I will take it for 2 weeks, have a week off the tablets, then go in for another blood test, and continue the routine every 3 weeks, with denosumab every 6 weeks. Looking online the length of time people get can be a few weeks, to many years, so I guess we wait and see. Side-effects are also ‘wait and see’, though fatigue, hand and foot syndrome, and stomach issues sound highly common – woo hoo…
Yesterday, I also joined my ‘new’ friend Jo’s funeral online … another friend Jo has just written on her anger around this for METUPUK.
Some things to be thankful for
I’m sure I’ll think of more and sneak back to add to the list… for now working from my diary, which has a load of things in it that DIDN’T happen, as for many… and of course throughout Andrew and Jane have been core to my bubble of support locally!
- January: Was in recovery from my oophorectomy: got to spend a lovely week in Rosie’s Barn, and have a belated Christmas with my parents.
- February: Managed a weekend in Munich, and a gentle ‘return to work’, whilst I packed my bags for New Zealand.
- March/April: Managing to get to New Zealand, even if I got locked down and missed out on nearly all my planned activities, and rattled around a building for 40 – it was next to a lovely beach (oh, I miss the swimming), I was well looked after, and I had the Timas as my lovely lockdown family – and lots of other people to talk to online (both in NZ and elsewhere, including being able to join churches) *and lockdown didn’t happen til after my birthday. Although COVID meant that I didn’t get checked over personally, I had several good interactions with New Zealand medics about various pains, and getting repeat prescriptions – but was sent home with the thought that the serious chest pains were ‘just pulled muscles’. Wrote my chapter for The Distanced Church.
- May: Managed to get a consulate flight back to the UK (including a business class seat, so SOME sleep), where Andrew and Jane had made sure my car was MoT’d, and that house was ready for me to come back to, and my Mum had sent a big box of Cook meals. We made lots of progress on our NIHR bid, I joined webinars and counselling online, managed to get some food delivered, and completed a draft of my autoethnography academic article on cancer/digital (triggered by a free online writing retreat with Helen Sword).
- June: I finally got my (belated) CT scan with contrast, and also joined the faculty writing retreat (online), made some progress on my second edition of Raising Children in a Digital Age (which I’d been working on in New Zealand, but spent most of my time talking to medics and the consulate, trying to get home). I was due to go to Paris for 2 days, but hopefully those tickets will be valid for longer than the 12 months they said…! Wrote final report as external examiner for Staffs Uni.
- July: Kim and I worked on our eNurture bid, another bid on social media and cancer went into NIHR, I went on some socially distanced walks as the GP said that was OK (with masks), ended up in hospital with new tumours in sternum/mediastinal mass – super thankful for the NHS (much as I didn’t want to stay in) for being quick in working out what was going on, then treating me immediately. Thankful that I have good sick pay from my job, as expect to be off for a while from this point.
- August: Not a fun month – radiotherapy, started paclitaxel, once again – thankful for the NHS, and from the ongoing support from people online, offline – most particularly my Mum, and through the medium of postal parcels! Also got to do some interviews on BBC Radio 5/BBC Radio 4/BBC Radio Manchester re cancer/COVID.
- September: Mostly thankful for people, including my medical team, people online/offline, and those who joined my #BexParty – which I do plan to do more of .. isn’t it brilliant how tech keeps us connected! Cousin came to stay, and managed to meet other cousins at Tatton Park. Also, around this time, my cleaner was able to return and help me out again… Kim and I got our ENurture bid in.
- October: Had a CT scan (stable), and my awning and patio heater arrived/were fitted (for all those people who can come and sit in the back garden – oh, not allowed to do that, oh well)… Enjoyed the CofE Digital Conference.
- November: Spoke at the Premier Digital Conference, joined lot of online chats, another day in hospital being scanned = pleural effusion. Learning how to let go of the need to get things ‘right’ and having a go at my #OpinionMinute on Tik-Tok
- December: Been lots of chats with people, online and offline, lots of medical interventions (as per cancer blogs). Over Christmas/New Year, Hannah has been staying (having isolated, had a negative COVID test, and got an empty train) which has been lovely company (as well as she’s doing most of the cooking). We made it to Dunham Massey Christmas (bit freaked out by busy-ness, but the lights were lovely), and we did an online Harry Potter experience (Hannah is now onto book 5, having never read any), and had lovely Christmas with A&J.
And of course thankful for all the entertainment that has been available online via Netflix, Disney +, Amazon Prime – though I would like to get back into theatres and see The Cursed Child, which I had tickets for in Melbourne!
For now, need to (belatedly) get dressed, have a little walk, and prep for the fact that we’re doing midnight at 9pm (we’ll just pretend we’re in Uganda, right?), including a little pre-9pm-zoom with people!
Selfie a Day (made later in the evening, added to post NY Day)
Made with the Selfie a Day app
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.