2020: What a year… and a CANCER update!

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!

What’s next?

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

2021 Please:

Featured Image Photo by Immo Wegmann on Unsplash


Chris Moyles Talks Up Church

There’s been several mentions of Chris Moyle’s show the other day, where he was absolutely amazed to see people ENJOYING being Christians – clearly been going to the wrong churches!

Digital Life(style)

#assk64: Trending


Finally, I am “trendy”, and was ahead of fashion!
The website “64 words for Aung San Sui Kyi” launched yesterday evening at 9.30pm (GMT), and I was only the second person to Tweet using the hashtag #assk64. Working late on something, I watched it start to take off, particularly once @SarahBrown10, @jimmycarr and @eddieizzard started tweeting about it.
Trending Topic
The image to the left is a screenshot from Twitter in the last 10 minutes, showing that #assk64 is now the third most popular topic on Twitter right now – that’s pretty impressive in less than 24 hours! Most are redirecting people to the website although of course there’s always a few mis-using it – ignore them!
So Where are most of the Retweets coming from?
The organisation behind this hasn’t been slow in asking celebrities to post their “64 words” (although many, like me, have tweeted about it, rather than written their 64 words), and I suspect that @stephenfry (with over half-million followers) has had quite a bit to do with an extra spurt in popularity and the official @64forsuu should be worth following too! @assk64 has dropped off the top trending topics, but still plenty of activity, particularly triggered by Alan Davies this afternoon.
On the Website: George Clooney, Archbishop Desmond Tutu, Vaclav Havel, David Beckham, Daniel Craig, and the British Prime Minister, Gordon Brown have all written messages of support.

The News: Waiting to see it start to appear, only 1 story in Google at the moment.

Take Action: On the website, on Twitter, or on Facebook!
Update 11th July 2009: Interestingly #assk64 is still circulating on Twitter.

The Big Sleep Out: Winchester

Winchester: 15th May 2009

Do you feel inspired to sponsor these people who are CHOOSING to spend a night out in the cold, in the aid of those who feel they have no choice?

I’M NOT ASKING FOR BIG AMOUNTS, BUT IN TUNE WITH THE IDEA THAT SMALL CHANGES ADD UP TO BIG CHANGE(S), AM LOOKING FOR 50 PEOPLE TO SPONSOR ME WITH £2.00 EACH… of course you can pledge more if you wish… I’m just looking to get lots of people involved/raise awareness, etc.! If you’d prefer to give me the money offline, that’s fine too…

Companions: Amanda Henocq Charly Norton, been chatting to Martin Tod on Twitter about it, and also from the University The Sleepy Heads!

About the charity : Winchester Churches NightshelterWinchester Churches Nightshelter
Big Sleep Out: a fundraising event in Winchester Cathedral Close, in aid of Winchester Churches Nightshelter and Trinity Winchester. Both charities are extremely stretched by high demand and need your help; so do their guests, those sleeping rough and the hidden homeless. Please support us.

Winchester Churches Night Shelter offers an essential lifeline to the homeless, providing high quality food and shelter and a secure support network offered to address problems and re-develop life skills. We are the only direct access accommodation for the homeless in Hampshire, and a vital first port-of-call for our guests. Our team of professional support workers and staff is focused on helping guests move into sustainable, long-term accommodation and escape the homelessness cycle for good. Further details:

Trinity Winchester is a day time drop-in centre that provides services for those experiencing the effects of homelessness, vulnerable housing, problems with substance misuse, mental health issues, poverty, unemployment and social isolation. Further details:
Charity Registration No 1080443

[Addition on the day: Please help get my sponsorship up to £100! It’s raining, and we either sleep outside, or we sleep in the Cathedral – which will be FREEZING (a hard stone floor)… Every penny counts]


Thankfulness and Positivity

As we rolled into 2009, I’d already been preparing to start my “Thankfulness Diary”, which is a cross between a prayer diary (inspired by Bill Hybels “Too Busy not to Pray”) and a focus on that for which I’m thankful on a daily basis. I often like to get things “right” and both my thankfulness diary and this blogs are areas in which I want to play and see where the path takes me (in a similar way to how I prefer to travel!), as for paid work it’s a lot more focused, but without that space for creativity, no new thinking will emerge.

Thankfulness Diary
I bought an A4 page-to-a-day diary (and would you believe how long it took to find one which had full pages for Saturday/Sunday as well as weekdays, finally, a £1 shop!), and either in the morning or the evening I combine my chapter of Bible reading with some notes from The Word for Today and then I let myself at it. Text is still my primary medium, but I let myself at the scribbled drawings too, and who knows what else might come to mind as I relax into it more!

Whether to go morning or evening depends on my mood, and each has different benefits. In the morning set off for the day with a particular spring in the step, in the evening can really think back over what has happened on that particular day. 

I have noticed a difference as with “the current economic climate”, the fact I’m living out of a suitcase in a friend’s spare room whilst job-hunting I could just focus on the the mountains to climb, but instead am concentrating on a step at a time (and looking back at the steps already taken) as I’m incredibly grateful that I do have a roof over my head, I’m picking up some bit-work which all adds to the portfolio, and there’s space for some creative thinking, further learning whilst I move through the process.

It’s not an “instant fix”, and it certainly doesn’t mean walking around on (or in!) a cloud of hot air all day. A bad news story, e.g. “more jobs lost” can still knock you sideways, but looking back at all the things there are to be thankful, and looking at it within the bigger picture wins the battle.. eventually!

I wondered if anyone had set up a positivity blog to counteract the current negative thinking, particularly focusing on positive news stories. Not found one like that, but the first entry on Google does have a lot of tips for creating a positive mindset for yourself, and in fact offers a specific “Positivity Challenge” which chimes with the above.

Linking Note
To note, if you wish to create a link to a long URL (I’m especially thinking if you want to create a posting in Twitter) use Tiny URL to create a short URL which doesn’t break-up in emails, or use up all that space.