Tag: New Year

Categories
Cancer

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

Categories
Cancer

[CANCER] Thinking about Old Year, New Year, @BeyondChoc and Self Care

I’m pulling together a few blog posts I’ve been thinking about writing for a while, expecting each of them to be simple sections – probably with a lot of embedded content, not necessarily deeply profound, maybe waffly, but we’ll see …

In some ways cancer has made me rethink a whole lot of things, in many other ways it’s just solidified a whole lot of other thoughts … if life is going to be shorter, and/or living with more fatigue and side-effects, then how do I find ways to live with that, whilst feeling that my life has purpose, but doesn’t have to be all about ‘doing’… reminded by this:

Old Year

It feels weird to think that I’ve been ‘living with and beyond cancer (LWBC)’ for 16 months already, and for the last 12 months, I’ve been using ‘Selfie a Day‘ to capture an image each day (of something ‘ordinary’, although if there’s something particular on a day, I’ve tried to capture that). In line with my oft quoted desire to get people to share the ‘reality’ of life – good and bad bits – hopefully with wisdom (against oversharing, although everyone has a different definition of this) and humour (people LWBC tend to develop quite a black sense of humour!) there’s a real mix, and it’s weird what shoots through your head as you look at the images zip past from the last year:

As:

New Year

I realised years ago that ‘New Year Resolutions’ are really a set up to fail. I’d rather think about (small) changes I can make as life goes on, and not wait for a particular date (especially one associated with the idea that a week later no surprise if you can’t stick with it) – especially not now.

As a historian, I remember in my degree also looking at the fact that months/years/decades are all:

This I like:

However, come January 1st, we get a whole load of this:

In some ways, it says a lot about the culture we live in, that Christmas/New Year break is the only time that people feel they have a chance to think about what they want out of life, and suddenly there’s a conviction that everything can be changed with just doing a few ‘of the right things’!

Though maybe #AcademicJoke:

Beyond Chocolate

A particular one that gets to me is the weight loss resolutions, and the obsession with calories:

This is one of my favourite cartoons ever:

Because:

There’s a whole lot of content and literature around the no-diet culture (and we’re not including Weight Watchers rebranding as WW – the wellness brand), including developing academic literature – I’ve got a couple of bookshelves full (not that I’ve read them all yet!): 

A couple of really helpful hashtags I follow on Instagram are #HAES (Health at Every Size) and, more recently, a friend has encouraged the use of the tag #InstaImperfect to challenge the over-curated-ness of many Instagram feeds. Another friend for the past few years has encouraged #ThePeakAndPitCollective, which I love (although haven’t participated in) as it encourages that sharing of ‘reality’, but also a focus on being ‘thankful’ for something!

I came across Beyond Chocolate in 2009, and have posted about it occasionally, as it’s become a core part of my life. As a BeyondChoc volunteer, I post something on the Beyond Chocolate Facebook page pretty much every day (quite often in advance), posting stories like this:

It’s all nonsense and we need to remember that diets do not work, however guilty we’re made to feel. We will see the same advice as last year dressed up in new clothes but they’re all essentially just the same books, DVDs, blogs and diet plans. Even fun, zesty lifestyle changes which have weight loss as a goal are just diets in fancy new trousers. Independent

And this:

People pop into Beyond Chocolate looking for a quick ‘weight loss fix’ like anything else, and are often shocked that that’s not what’s on offer – there’s no miracle cure, because:

Typically, most people eat for reasons other than hunger, and ‘diets’ don’t teach you to reconnect with that. Beyond Chocolate is challenging, both within a culture that assumes that it is licence to eat yourself sick, and individually, because it forces you (gently, and slowly) to face the many things in life that make you feel uncomfortable and stuff down with food, and the battery of numbers, scales and stats that come at you (especially in the middle of cancer treatment, where you get weighed at all kinds of appointments, although most appointments were really good at respecting the fact that I don’t find the numbers helpful, and just wrote them on the forms).

Over the past few years, I’ve settled into a much healthier lifestyle, finding foods that are enjoyable and make me feel better (mentally and physically), chocolate and crisps can sit in the cupboard for weeks, finding activities that I enjoy and want to participate in (whether that’s Pokemon, cycling to work, hiking, karate, or the gym) – as you’re then ‘lapping everyone on the couch’, and seeking to be nicer to myself in a world that values appearance over everything else, and assumes that you can beat yourself into a ‘thinner you’… and you end up missing out on things because being fat and overweight if a very visible thing (often attracting the ‘it’s simple, less in than out’ – which doesn’t bring mental health and emotional eating in the equation):

There are concerns around cancer and it’s various side effects, associated with weight (although I didn’t feel that the Cancer Research UK Obesity campaign particularly helped – what did it actually do to help promote self-care and better behaviours?), but a focus on weight immediately brings unhealthy behaviours with it. The treatment I’ve had this year was expected to put weight on, but, with the work already done with Beyond Chocolate, I stayed the same (so far as my clothes will tell me), and in fact, without the distractions of going into work, etc. and taking time to declutter and sort things out, and with my body super-sensitive to different foods, etc. I found myself listening to my body in a way I’ve not before … within the style encouraged by Beyond Chocolate of gentle exploration .. rather than “I’m now going to do THIS forever”, to try something once, and if it works, try it again… Got me out the door everyday, got me decluttering a few minutes a day, and also encouraged me to understand the value of sleep to enable everything else!!

So basically (especially if you’re suggesting that Kale will cure cancer):

Loving this that just popped up in my Facebook feed this afternoon:

Self Care

One of the things I’ve been undergoing related to the cancer is counselling, using self-compassion therapy to deal with the realities of life with cancer, and life after cancer, and knowing that life before cancer still has an impact… and if you’re someone who lives in their head as much as I do – it’s exhausting! It’s been a challenging few months (I was due to finish before Christmas, but we’re keeping going whilst scanxiety continues).

Related is self-care, and the typical thing that one hears about self-care is bubble baths and all that… that’s not what we’re talking about – something with a whole load more effort such as:

  • Focusing on getting plenty of sleep
  • Planning food, etc. each week (flexibly) and preparing tasty food for the freezer in advance – and buying pre-chopped frozen veg
  • Thinking more before I say yes, and trying to say no more (to the people-pleasing things)
  • Turning off work (emails) evenings/weekends
  • Being quite militant about getting to my gym sessions
  • Got rid of National Trust membership and magazine subscriptions, so don’t feel the pressure to ‘do’.
  • Making space for reading for enjoyment
  • Connecting with people, possibly for shorter lengths of time, but trying to plan some in amongst the fatigue – means people have to make more effort to come my way
  • Blogging about cancer, rather than dealing with individual queries as much as possible
  • Asking for help and company with treatments – especially any with results or cannulas
  • Getting ahead on things such as cards/presents so there’s time for delay
  • Getting my head down on work at work time, because there’s no ’til the wee hours of the morning to catch up’ possibility, and have to work within my energy levels
  • Going for things that I really want to do, putting the perfectionism to one side
  • Declutter and getting house a nice place to be …
  • Overpaying the mortgage to give a buffer in case of recurrence or mets
  • Not forgetting, of course, my wonderful cleaner – frees up so much mental time thinking about cleaning!

I’ll probably think of more stuff later, and reserve the right to add to it…

Living Life to the Full

So, excuse the slightly self-indulgent waffle and reflection (before the work emails go back on tomorrow), but just trying to get some of the things flying around my head out. I’m sure I was going to write something more profound here, but I’m, in contemporary parlance, seeking to ‘Live my Best Life’ and:

and:

Life is flipping hard work sometimes, but I like this reminder:

Congratulations if you got to the end!! *Waves*

*Later that evening … oh yes, the other week @thecancerchrons blogged about living a life one doesn’t regret and I was thinking I’ve had some seriously tough moments in my life, but I’ve also done a lot of good things – pursued my passions in work, got a lot of friends, travelled a lot … and people tell me that when I say I want my headstone to say “She made a difference” – that’s already true – by being who I am, and by the work I produce!

Categories
Life(style)

I’m so excited…. I just can’t hide it… I know I know I know…

Well, I thought it was better than heading it “Walk Like An Egyptian”!!! I’ve been missing my travelling, but last year was pretty much all I could do to earn enough to live on – this year, however, I know what work I’m doing for the next year, so I can plan in a trip… and am going to spend Christmas and New Year in Egypt!! Here’s the blurb from ‘GoBus’s’ website:

“Travel with GOBUS to the land of the Pharoahs, where an amazing action packed adventure awaits you. Nowhere does ancient better than Egypt! Walk like an Egyptian amongst one of the ancient wonders of the world – the awe inspiring Pyramids of Giza. Explore the spectacular tomb strewn Valley of the Kings in Luxor and gaze in wonder at the mighty Abu Simbel. Top off your journey back in time with some good old fun in the sun – sailing down the Nile onboard a felucca and swimming in the azure waters of the Red Sea in Dahab.

Our tours are designed for the budget conscious traveller who wants to see all the major highlights of Egypt without breaking the bank. Cross Egypt off your wish list and experience all it has to offer with GOBUS!”

I’d not heard of them before, but a friend had seen Travel Talk’s trips, but there were quite a few negative reviews of them on the internet, and it’s always good to do a bit of extra checking (without spending HOURS checking), and I came across GoBus, for which I could find nothing but good reviews (not on GoBus’s site!)… the only complaint I could see was from someone who wasn’t on a GoBus Tour – and the Tour Leader helped him get to a hotel – and his criticism was that the GoBus Tour Leader didn’t seem sure what to do…!

We’re on the Pyramids & Beaches tour – so a chance to chill out in Dahab at the end (hopefully with a bit of diving!) – can’t wait!!!

Categories
Life(style)

January 4th

Don’t worry, I’ll get bored of this soon, or start drowning in other work, but so far today I have written an AimHigher session, finished an exam paper, rang the tax office (one of those calls which has moved daily across Outlook), chased up an insurance claim, taken delivery of a (very powerful, especially when braking) hire car and sent my little car off to be repaired (my neighbour drove into it taking out the right wing), been to the gym &  Tesco, and started work on 3 lectures… oh and written some blogs about my trip to Switzerland:

Categories
Life(style)

2nd January

It’s been an odd day so far, woken by the postman, read for an hour – then next thing I know it’s 1pm! Not in favour of the gym today, so decided to go out for a walk before it got too late!

Just in time to catch the sun falling at the bottom of St Catherine’s Hill!

Beautiful colours…

Halfway up the hill, the sun is going down quickly over Winchester…

Just in time to catch the last drops of sunlight…

I finally worked out how to use the Macro function on my camera – it had moved from the previous model and I’d given up looking!