So, here we are, a year on from the official diagnosis of Breast Cancer (looking back at some lovely responses to the first tweet about it, although I’d already been quite overwhelmed by the ‘hugs’ etc via Facebook even earlier). I decided quite early on that I was going to use social media and blogging to talk about what was happening, even if I never expected to use the word ‘breast’ quite so many times in my life – or to have so many people see them (now it!), because a) awareness is important and b) it’s a space I’m embedded in and an easy way to reach many people as energy has fluctuated! The material I’ve produced may form the basis of an article for the Journal of Sociology of Health and Illness, but that’s for another day!
End of ‘Active Treatment’
The questions in the heading, ‘So, is it all over then? You’re all right now, then?’, are the typical ones I’m now getting. It feels like a combination of people wanting it all to be over (it’s been a long year, especially so for me, but also for those around me – I know!), and hope that I’m ‘on the mend’, but the typical answer is ‘yes and no, not really’!
Surgery was in September, Chemotherapy ran December to March, I started Tamoxifen in April, just before radiotherapy – which ran through til May. So, that’s what most people consider the end of ‘active treatment’ – or as I sometimes describe it – having been slashed, poisoned, and burnt! *Might yet write a book with that title!
Mixed in amongst all of this has been a multitude of appointments with specialists, many blood tests, and various scans – most recently a DEXA scan (to set the baseline for my bone health), and I am awaiting what will hopefully be a final MRI scan on my spine (final if it confirms that is unchanged over 6 months, in which case no one’s worried about it – they say that often these kind of things are there for years until someone pokes around for some other reason.
Only a couple of weeks ago, I started the next stage of Endocrine (hormonal) therapy, with injections of Zoladex – likely to be every 28 days for the next 5 years (via a trained nurse at the GPs), and in around 6 weeks will be back at the Christie to see if my oestrogen levels have reduced from around 2000, to around 70, in which case my Tamoxifen will be swapped to Exemestane – a daily tablet for the next 10 years.
Essentially I’m now being pushed into a ‘chemical menopause‘, so possible to bring on all the menopausal symptoms, but without the slow build up of a normal one, on top of a body that’s already been #SlashedPoisonedBurnt! I was told that chemo had already aged my ovaries by 5 years, and as I’m 43, we’re now seeking to finish that process off! And as they are seeking to remove hormones from my body, no option for HRT or any other replacement therapies… so we’ll see how it goes!
Physically, the main ‘after-effect’ is fatigue, which I was warned would last around 3 months post radiotherapy (which has now passed), and if it continues to visit the GP. I’ve essentially been working on getting enough sleep, getting up in the mornings, and continuing to get out for some fresh air every day (Pokemon anyone?), as advised! I’m hoping to take up 6 months reduced gym membership via the PARiS scheme (although I prefer social/outdoor exercise, maybe for 6 months!!), and in a couple of weeks I’ll be going on ABCD Exercise Retreat (I get shin splints, so can’t run, but I do enjoy hiking, cycling and swimming … and karate!).. hopefully the breathlessness from hills/steps will gradually ease!
Anyone who knows me that I’ve never been great at pacing myself – life is too exciting and there to be explored – and now it feels like it needs to be seized with both hands which is leading to crash and burn episodes after possibly ‘doing too much’, but I also don’t want to wrap myself in cotton wool. I thought I did quite well this past weekend at a fabulous Greenbelt – I didn’t camp (so slept!), didn’t get there too early didn’t plan to go to loads of talks, mostly sat in the Jesus Arms and chatted to people – or bumped into them in between venues, had a go at a few new things, watched performances, and went to bed early! Wednesday was still largely a day with limited movement!!!
Officially the meds I’m on are likely to cause insomnia and more fatigue – but I am – so far – sleeping heavily (although some very vivid dreams, though thankfully none of the hot flushes yet!), sending myself off to sleep with Harry Potter on Audible (finally onto Book 7 today, having started listening to Book 1 in September), reading more/scrolling less, but this does mean I have limited ‘awake’ hours, along with limited energy, so maybe I’ll finally learn to say ‘No’ – as e-mails and private messages pile up (apologies if I don’t manage to give as much social media advice this year)!
I feared chemobrain, and whilst it’s definitely not been as catastrophic as expected, it’s definitely making it’s presence felt! Forgetting names, places, words – even whilst on live TV (though no one noticed, so that previous practice clearly paid off!) forgetting what I’m saying in the middle of a sentence! I’ve managed to keep going with writing, etc. but it all takes a little longer, and a little more effort…
Aside from fatigue and chemobrain, and a lowered immune system, the other main physical issue is peripheral neuropathy, where the tips of my fingers and toes are quite numb – I can still do clothes up, which seems to be the standard question, although I look back on things and notice more typos where my (officially) touch typing has gone a bit to pot! The meds also cause some aches – shoulders, back, and – weirdly – calves! And, of course, the surgery site is a mix of numbness and tingles!!
Otherwise my hair is fully back (it did thin, though only if you looked very closely!), although my eyelashes are back but starting to fall out again (apparently they’re on around a 4 month cycle, and this is normal), and I think my eyebrows still seem to have some patchy areas – but I received an eyebrow pencil from Look Good Feel Better, so .. ! Skin is also quite dry, but I was given much moisturiser by people (and the GP prescribes Aveeno) so I am trying to make time to put that on – and do manicures for splitting nails.
I have a lifetime risk of developing lymphedema in my left arm, as I have no lymph nodes (infection fighters) left on that side – apparently not to be feared, but also to be avoided where possible. The other question hanging in the air is one of reconstruction – yes, I am what is officially known as a ‘uniboober’, and so far, I’ve not seen anything to persuade me that I need to undergo more surgery to have a reconstruction, so very thankful for my prosthetic(s), and my knitted knockers!
This article by Peter Harvey is widely shared:
after the treatment has finished and at the point where you can begin, bit-by-bit, to deal with all that you have been through and all that is to come. You may have had to endure months of treatment by knife, chemicals or radiation until you are probably sick of the whole business, both literally and metaphorically. Now is the time to heal, both body and mind…. The first part of this framework is the recovery process that has to be gone through. For me this happens in three stages: recuperation convalescence and rehabilitation.
I’m continuing counselling sessions at The Christie every fortnight, which are proving helpful, if tiring! One of the things we’re looking at it is the fact that my days have very long to-do lists in them – one of my days off I only had ‘sort washbag, and pick blackberries’ on the list, and it was lovely – so we’re looking at how to realistically reduce the pressure on my brain (which can feel quite overwhelmed, and as if it’s constantly in conversation with itself)… at least for now!
According to the Strengthsfinder test, achiever is my number one driver – so I never feel what I’ve done is enough, and I always undervalue my own contributions, so that’s something we’re dealing with now as I just don’t have the same capacity as before… that is causing A LOT of frustration … so I’m holding on to the things that I can see particularly value me for ME! Cancelling a whole load of subscriptions to various things – magazines and apps (ironically Headspace was causing all kinds of stress, so stopped using that) – though as of September, I’ve managed to pick up my charitable giving again – thanks to the people who’ve covered it for me this year!
I feel, at the moment, that I have very little ‘control’ over my emotions – having not cried much beyond the points of diagnosis/surgery/start of chemo, tears are randomly coming out of nowhere! I’ve been on antidepressants for several years, but never suffered from anxiety – and that seems to be rearing up! In many ways, it still feels a bit like it’s all happened to someone else, and maybe there’s finally to be some space to realise that this happened TO ME!
As the oncologist said, if you’re in the unlucky 20%ish (for recurrence/secondaries), you are, and we’ll deal with it then. For now though, we’ve done everything – with curative intent, and we’re now looking to live a life as if cancer has been dealt with – easier said than done so far- although I’m feeling largely optimistic!
Lots to process here, I suspect … and much of it won’t be in public – and some may be on Casting for Recovery in Dundee just before term starts!
Returning to Work
That would be the other question from people ‘when are you returning to work?’. Officially, thanks to the generosity of the University, and the fact that I have a part of my role (research) that I’d typically expect to do at home (thus avoiding the bugs that are rife in a university, for my immune-compromised system), I have been given ‘study leave’ since diagnosis, combined with sick leave as appropriate (around 8 days for surgery, around 10 weeks for chemotherapy, and around 3.5 weeks for radiotherapy). My year, workwise, looked something like this (and involved quite a lot of ‘life is short, let’s give it a try’ that I might not have tried before):
- Only a few days after diagnosis, due to the flexibility of the organisers (they had a backup presenter on standby), I gave my conference paper ‘Inclusive Placemaking: Placing the Christian Church in a Digital Age‘, at the IPM Conference. I had been meant to be speaking at St John’s College in Durham straight after diagnosis, but offered my contribution via a blogpost, and also engaged in a handful of online webinars throughout the year.
- I took a few days off after surgery, but then my book Keep Calm and Carry On: The Truth Behind the Poster required some PR, so I got involved in that. I’ve got involved in other PR activities this year, worth at least £125,000 to Manchester Metropolitan University (including Express, Guardian, Telegraph and BBC Breakfast, and quite a lot of radio).
- In between surgery and chemo starting, I spoke at the Premier Digital Conference, and judged at the awards.
- With a little help from some friends, the day before chemo, I submitted ‘Social Media, Peer Surveillance and Spiritual Formation: Practicing Christian Faith in a Surveilled Public Space’, for Surveillance and Society Journal. I did the edits in between chemo and radiotherapy, and it’s now been accepted – and an eprint is available on MMU.
- I submitted, and had accepted, an entry to the parliamentary inquiry into the impact of social media and screen-use on young people’s health.
- The week after chemo finished, I presented at Spring Harvest Harrogate on Discipleship in a Digital Age.
- Applied for, and went to the first 2-day (of 3) NCCPE Engage Researchers’ Academy in Bristol.
- Applied for, and was accepted, onto the ‘Developing Researcher Excellence’ programme at MMU, where I’ll have a research mentor for the next 2 years + 570 hours of research time (rather than 310), to help encourage REF’able outcomes/towards Reader (the next step before Professor). Applied for, but wasn’t accepted onto, the writing retreat! I’m waiting to hear what/if public engagement hours I’ve been awarded, but have applied for those too.
- Spoke at #HonestTalks and and Big Social – both in the area of social media and healthy workplace policies, one of which led to a piece in Business Cloud about how Facebook helped with surviving cancer.
- Applied to Macmillan to undertake research into social media and cancer, and was one of 12% to get through to the second round – which I need to submit by 18th September. This is something I’m finding really important to hold onto, as it gives a potential silver lining to this rubbish year!
- I took over a couple of Masters students in the summer, and am looking forward to picking up with my PhD student, and External Examining at Staffordshire University, although I’ve said that the suggestion of taking on pastoral support for 80 students this coming year at MMU may not be the best idea!
Physically I’ve been popping into work for the odd day, as seen here:
This summer, I have been using my annual leave to work 3-day weeks (and taken this week off – Jersey here I come!), one day in the office, 2 at home. They’ve been pretty full days to be honest, but as term approaches there is more to be negotiated. Occupational Health were clear in the face-to-face session that they felt I’d done a lot, and it’s now about gently layering some teaching/physical presence, although the letter written is rather vague – except that they only want me to need to be physically present for one short day per week, with the rest done at home. It’s a challenge to find the teaching aspects of my role that fit in with that… and causing me some anxiety! However, I have done as I promised, turned work email/social off til next Wednesday!
Digital Fingerprint is my social media consultancy – I had to turn down a few pre-booked events after diagnosis, and I suspect it’ll be very much on ice for this year – at least the public speaking side, although the odd commission for writing is enjoyable, and potentially doable.
Knowing what to say to someone with cancer can be tricky – one of my new friends Sara has recently written on this – starting with simple positives:
1. “I am here to support you no matter what.”
2. “I don’t know what to say.”
3. “Tell me what I can do for you.”
To be honest, I’d rather people spoke to me that over-worried what they said to me – I work on the assumption that pretty much everything I get asked comes from a good place (well, from friends anyway!)!
I did enjoy chatting to my Macmillan Nurse friend Maddy at Greenbelt about how the stats for recurrence are based on a lot of older women, and that she rarely sees women with breast cancer in her palliative work … and if you’re Winchester-affiliated (or even if you’re not) and want to support a good cause, help her dream of Winchester Hospice come true!
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.