[CANCER] Feeling all the Feels? #BreastCancer #BusyLivingWithMets

So, it’s been four days since the diagnosis. Overwhelmed by the outpouring of love and support from others, and the anger that others have AT cancer on my behalf, those not expecting too many replies, take time to read the blog, etc.

I found it quite interesting that this time round, unlike the primary diagnosis, people knew that I was in the waiting room, and the lack of post gave a lot away before I said anything, whereas first time round, only a handful of people knew what was going on!

If you can avoid avoiding me, and avoid the pastoral tilt and the ‘how are you really’, that’s really appreciated – and yes, I know I look well – but unfortunately my body is engaged in a battle (we discussed this in Maggie’s today – our bodies may be in a battle, we are but observers of that – if we die because of cancer, it’s not because we didn’t fight hard enough, but because the cancer was too strong, and the medicine is not yet enough).

Coming to terms?

I am overtired, restless, disturbed sleep, (that analogy about trying to escape the surf still feels particularly apt) but also seeking to ‘find the joy in the ordinary/everyday’, and already feeling – I don’t know – resigned/accepting? I feel very fortunate that I’ve travelled extensively already, so although there’s more places I’d like to go, and a restful holiday would be nice to look forward to.

I’m incredibly grateful for where I live, and the team for being spotting this so early, and giving me so much hope. They have been very honest at all points on this ‘treadmill’ (it’s not a journey is it), and there is plenty of treatment I can be given. I will find out my new treatment regime on Monday morning, with the oncologist (the last appointment was with the surgeon) – but I do know that it doesn’t include chemotherapy (hooray for small wins), my hormone therapy will be re-assessed, some form of radiotherapy will be given (CORE trial being investigated), some form of immunotherapy will be given (infusion? = cannulas = eugh), and something else. Not bad remembering considering didn’t take any notes and was really in shock: as BCN said, “we’ve just whipped away the last bit of hope that you’ll ever be cancer free”, BUT the treatment options are good (even if might come with added fatigue).

I cried a lot on Tuesday (and scrolled a lot), and my sleep was horrendous despite sleeping tablet (which I want to go try going without tonight after a week of them). Wednesday = a couple of phone calls, a visit from Helen, and I went for a swim – with my brain spinning I wanted the joy of focusing on counting lengths – though on length 12, my goggles were filled with tears too! Also discovered the MASSIVE spa pool and floated in the middle for a bit (still not sure what latest thinking is about that and lymphedema, but…) Just as I’d taken my swimmers off, the alarm went off (I tell you, getting a prosthesis on with wet skin is not easy) – I couldn’t smell burning so I just carried on getting dressed! At counselling on Thursday (which will continue – we’re not sure for how long, but the plan to finish it is suspended), was highlighted that I’m already on high alert/alarm state, so that’s probably why that alarm unsettled me EVEN MORE! We finished with a reminder to try and catch myself before making decisions (self care) and finding joy in the ordinary – it was a beautiful day yesterday!

No idea what else I did yesterday except faff online and make these #tenyearchallenge images:


View this post on Instagram


The #10yearchallenge – with a little #breastcancer awareness thrown in. #DarkHumour

A post shared by Bex Lewis (@drbexl) on


I’ve clearly been learning a bit about self-care because (and this will apply to next week too):

People think I’m as busy as ever, but I’ve definitely got less hours in my day (before this, and now I’m extra tired, but hopefully some bouncing back, though the new drugs may squash that!). My team and my managers have been great, with more concern for me as a person, encouragement to step back to process, but recognising that work is one of the things that offers structure/meaning to my life.  We are essentially going to be managing a chronic condition – and I don’t want to be staring at the wall contemplating death (like I’m ever going to not have things to do) – so they’ll be a lot of flexibility, a lot of focus on work I can do from home without too many deadlines that have other consequences, as we see how I respond to the meds, for now…

Really appreciated a visit from my Head of Faculty this afternoon to see how I was, and ask what ManMet Uni can do to make things easier:


One of the things that very interesting to have to deal with, and I’ve felt this over this past year already, is being at home SO MUCH. I love welcoming people into my home (shorter visits usually preferred), checking that I’m in/want a visitor first is very much appreciated! And you don’t need to bring anything (I’ve spent a lot of time decluttering, and my chocolate pile is growing LOL), though, you know, some logs for my fire always appreciated (even more LOL).

I really want my house sorted because enough of my life feels out of control, and that feels like something that could be done! I jokingly said about getting my hall done, and some people have suggested they’d be up for this. VERY welcome – I have the paint, the brushes, etc. (not quite sure about the right ladders), though some pretty nasty wallpaper needs to come off, and there’s likely to be holes to fill too! Think bathroom needs to wait for ££ (and a professional!). Anyone who wants to give advice on gardening (or weed/mow the lawn) always welcome. Thankfully my cleaner keeps on top of the house/changing my sheets/ironing! Unfortunately, I’ll probably need to sell on my new back massager – not good for spinal mets!!


Over the past few weeks I’ve been at Maggie’s every Friday learning ‘Where Now?‘, designed for those who’ve finished treatment, but oh yes, yesterday I also popped across to there to check that I’d be all right to continue (yes, because it’s all kinds of cancer, with people at different stages, including long term treatment), and to chat to Stephen who gives advice to help employers/employees make good decisions!

  • The first week we got to know each other, and talked about the experience of being a ‘cancer patient’ (finding it encouraging as ever to see how others cope, and the things that you think you’re just having a moan about are pretty legitimate!)
  • The second week was on exercise – I’d already headed to my parents for Christmas, and doing all right on that anyway!
  • The third week was on nutrition, which I was really wary about because of past history with food/diets, etc., but we started with ‘there’s no such things as bad foods’, challenged a whole load of food myths, and ended with ‘eat kale if you like it – don’t if you don’t’, ‘eat the rainbow’, ‘enjoy the food you eat’. Notes for self
  • The fourth week was ‘working with your medical team’, so how to get the most out of GPs, consultant appointments now that you’re not seeing people all the time.
  • This week started as ‘what do you want to talk about’ – opened with my news on #stage4 diagnosis – which segued into a talk about how difficult it can be to feel/manage emotions, thinking about death so that it’s not so frightening (we’ve prepared for it, so we can get on with living, knowing what we’re living for) and we ended up looking at anger and various other helpful angles, including my fierce desire for independence in a situation where so many things are not under my control!
  • Next week we’ll think about what’s changed, and where we go from now.

Maggies: Emotions

A few things that are helpful to share from this week’s session. This diagram comes from a form of therapy known as CAT, which was helpful after having seen You Don’t Have to Climb Mt. Kilimanjaro: The Pressure to Be an Overachieving Cancer Patient this week:

There’s a lot of pressure to come out of cancer, having found silver linings, which this excellent video voiced by Brene Brown – identifying the difference between empathy and sympathy (if your sentence starts with ‘at least’ you’re probably not saying anything particularly helpful)

We also watched this about boundaries (also worth checking out Cloud and Townsend for this), about finding ways to manage boundaries (I’m currently battling the – yes please let me know you’re thinking about me, but I need some space to process this stuff, and I don’t need to see everyone this week – they are being positive that I hopefully have many more years to go), but anyway, back to Brene Brown:

Anyway, my laptop battery is nearly dead (though I have a lovely new screen on my phone, and a pile of library books to read – go me getting that done today), and my energy is through the floor, so – anyway – thought I’d keep people updated. Probably be back with more on Monday after oncologist conversations! Is the crying done, I don’t know – we’ll see!

Life(style) Reviewer

#EmptyShelf 2016 #18: @BreneBrown: Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead (Penguin, 2012)


One of my observations from time spent with BigBible was that humour and vulnerability are the core posts that are read/shared, whilst I always know that the sermons and teaching that I hear that come from a place of vulnerability are the ones that I connect with as I hear others sharing from a place of struggle. Over the past couple of years I’ve heard the name Brené Brown (including I think via Greenbelt), so this year I decided to buy the book … so much so I ended up buying the book twice (two different covers!).

Brené has spent 12 years researching ‘shame’, of which vulnerability is a core part .. and in 2010 made herself vulnerable in giving a TED talk on ‘the power of vulnerability’ – which she describes as giving herself a ‘vulnerability hangover’ for days afterwards .. I recognise that from every job interview, speaking engagement, media spot, publication … anywhere where you put your thoughts out for public consumption. She describes vulnerability as ‘being all in’ – the need to walk into the arena, without necessarily knowing the outcome, with ‘courage and a willingness to engage’. ‘Daring greatly’ is about showing up and letting ourselves be seen.. and acknowledging ‘shame’ and feelings of ‘worthlessness’ so that we can ‘get in the ring’ and deal/engage. See her TED talk:

I shared bits and pieces with people online – and yes, I have an interest in what makes people share – I’m currently reading about memes and sharing online in order to add a new chapter to my PhD thesis ready for publication. My first share was:

Vulnerability is based on mutuality and requires boundaries and trust. It’s not oversharing, it’s not purging, it’s not indiscriminate disclosure, and it’s not celebrity-style social media information dumps. Vulnerability is about sharing our feelings and our experiences with people who have earned the right to hear them. Being vulnerable and open is mutual and an integral part of the trust-building process (my emphasis).

On the many occasions when I have sought to encourage people to be ‘authentic’ online, I have clearly added that there is a need for wisdom in what to share, rather than an unedited purging in what is a public forum, and includes taking responsibility for what we post online (I have a half-written article on anonymity online):

The fear of being vulnerable can unleash cruelty, criticism, and cynicism in all of us. Making sure we take responsibility for what we say is one way that we can check out intentions. Dare greatly and put your name on your posted comments online. If you don’t feel comfortable owning it, then don’t say it. And if you’re reading this and you have control over online sites that allow comments, then you should dare greatly and make users sign in and use real names, and hold the community responsible for creating a respectful environment.

One of the things that Beyond Chocolate encourages us to think about is our ‘gremlins’ – in what ways are our heads telling us we’re not good enough, not worth it, won’t manage it:

2016-02-22 09.59.50

Brené Brown shares her own gremlins… I recognise some of those!

2016-02-22 10.10.47

Also, looking forward to Gathering of Women Leaders next weekend, and trying to help women understand that leadership doesn’t necessarily mean a job title, shared this:

I have come to believe that a leader is anyone who holds her-or-himself accountable for finding potential and processes. The term has nothing to do with position, status, or number of direct reports.

Talking about women’s roles, this is interesting:

2016-02-22 10.20.19

Also interestingly, having originally started researching women, research into male roles provided insights into societal pressures to ‘man up’, be ‘the knight on the white horse’. For our culture, it has become de rigeur to be ‘too cool to care’, especially for young people (which goes some way to explain the number of students seeking to not care about their degrees), or as adults, we seek coolness by the titles that we gain, or, conversely, our nonconformity.

Having seen this post on Facebook earlier in the day, we were having discussions about aspirations versus reality, and I came across this on p.176

If we want to isolate the problems and develop transformation strategies, we have to hold our aspirational values up against what I call our practiced values – how we actually live, feel, behave, and think. Are we walking our talk? Answering this can get very uncomfortable.

PP 178-179 cover examples of aspirational values – in this case by parents – and how in unconscious ways the lack of role modelling means that children are told one thing, but see another, and therefore don’t learn those values. There’s lots more interesting stuff in this book, but I’ll finish with a share from the final chapter on ‘Wholehearted Parenting’, as over the last couple of years I’ve talked to a lot of parents with Raising Children in a Digital Age, and as academics, we talk about declining student resilience:


… and I’ve gained some insights into Grounded Theory! Plenty to chew on in this book from a personal, professional and academic perspective.

Buy the book.


[VIDEO] Brené Brown: Why Your Critics Aren’t The Ones Who Count

Another great piece on criticism – both from others – and from imposter syndrome… dealing with it, without losing our vulnerability.

Tell them, I see you, I hear you, but I’m going to do this anyway