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:
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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:
— Dr Bex Lewis (@drbexl) January 18, 2019
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).
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Thanks Helen, perfect visit 🙂 Checked I was up for a visitor, gave idea of time, bought posh macaroons in exciting range of flavours, didn’t care that in PJs/cried, talked about things other than cancer as well as #cancer- and thinks one of my new drugs will be https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/pertuzumab which has only heard good things about!!
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.
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!
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) 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.