When I was diagnosed with breast cancer on 31st August, I was both shocked and pleased at how fast things moved. We had to wait an extra week for an extra test on the biopsy to determine that the tumour wasn’t HER-Positive, and then the next thing I know I’m in surgery!
Those early days of waiting for biopsy results, extra tests, recovery from surgery, and then further scans to test that the cancer hadn’t spread, which thankfully it hadn’t (despite my scanxiety) – which I guess means I’m Stage 3A according to this Macmillan chart. I was told at the first confirmation that it was Grade 3 (most aggressive).
Meantime, I’ve spent the weekend as rather an emotional mess because the flexibility required for this treatment is wearing me down. I think I’m normally a fairly optimistic and positive person, but we can all get worn down. Thinking of friends who have died through this treatment, recent news stories about high recurrence rates, trying to work out if ‘this new thing that’s happening in my body’ is normal or not – all is quite wearing to put it mildly! *Returns to Tanya Marlow’s book!
Part of the stress of this weekend was that I was to meet the oncologist again this afternoon to find out the results from the Optima trial, as to whether I will need 18 weeks of chemotherapy treatment + radiotherapy + 10+ years of hormones, or just the radiotherapy and hormones. The side effects of chemotherapy look horrific, but obviously I’ll do if if that’s what’s required, but everyone hopes for a chance to not need it … and of course the trial means contributing to more research into effective treatments! Anyway … I had a phone call this morning to say that the results haven’t come back, so things are being chased in the hope that next Monday instead…
Alongside that, there’s talking to work, who are essentially giving me a form of study leave (rather than sick leave) as I can work at home on research – which is a great distraction – assuming one can concentrate – making progress on that journal article, managed to do a fair bit of media work, and even made it PremDac17!
That brings to surface one of the other big fears that gets amplified by waiting around and wondering what’s happening… the financial fears! MMU is my first full-time permanent role (started 2015), I’d just moved into my house 18 months before the diagnosis, and finally had been feeling that maybe I could throw off some of those student living habits – although my boiler needing to be replaced just as the diagnosis came in didn’t help. Macmillan reckons the average extra cost of cancer is around £570 per month for patients, and there are extra bills involved in being at home a lot more, extra fuel to get to many many appointments (and if people hadn’t driven me, much more in taxis), various extras such as Manuka Honey (10+) which seem worthwhile! I didn’t have critical illness cover, because with other pre-existing conditions, it was coming in at something like £220pm – and of course we all don’t expect to need it!
Thankfully we have an amazing NHS in this country (long may it last), and all my treatment has been covered, staff are fantastic, my prescriptions (not dental) are covered for at least 5 years, I get a free prosthetic boob (which randomly lined up look a bit like Ollivander’s wand shop, or those old fashioned shoe shops with the boxes lined up by size), a free bra (and it’s not too granny!), can order a wig if required, etc. for £70…. obviously I haven’t totalled all that up! I’ll be on the lookout for appropriate counselling at some point too, though I suspect that’s not covered!
I was initially told that I would have to take 4-6 months off work – which would not all be fully covered by sick pay, and also lost (or at least postponed) gigs with my consultancy Digital Fingerprint, suspended being an external examiner for University of Stafford for this academic year, and who knows what this’ll do to career progression plans. These are all things one doesn’t plan for … we’re just getting on with our lives! MMU, however, have been pretty good so far – my team went straight into action, covering my teaching, sending me supportive messages + Birchboxes, saying ‘we want to see you back next September fit and well, and ready to carry on teaching!’. Meantime, I’m getting on with research-based work at home, which contributes to the REF – I know people say cancer’s supposed to give you an epiphany into what is important, but no one goes into academia for the £ – I want my work to make a difference – even more so now to be honest! There’s going to be ongoing waiting whilst in conversations with Occupational Health, managers, etc. once on a full return to work …. and of course there’s always a fear in the back the head about a potential recurrence – do I live a little more freely in spending a little more to ‘make the most of life’ (not that everything costs), or do I go back to ‘being super careful’ in case I need the ££ … such thoughts are on a tiring whirl!
Other sources of support have been Maggies employment expert, Macmillan has a load of information on work and cancer, whilst my mortgage company work with Macmillan to provide specialist support to try and take away the financial fears – and will give me a holiday repayment if required, although thankfully I have had a few gifts (including not needing to buy as much food), which means I now have 6 months of payments sat in overpayments. #thankful
Friends and Family
Throughout all this I have been deeply grateful to friends and family, and have sought to keep people updated via Facebook, Twitter and blogging (well, I am a social media specialist!), and whatever platform works – minimising as much repetition as possible! Some content is more public than others, and I hope I’ve got that balance right in trying to keep friends/family informed, help for others going through this, and yes, to a certain extent, quite therapeutic for me! I have no idea how anybody manages to undergo this and keep it a secret!
I know that life continues for others, but there’s a steady group of people checking in, cheering me on, encouraging me – online and offline, and hearing of so many prayers around the world – and I am enjoying my ‘walls of love’ every time life seems pretty dark:
We started here … and various flowers/plants have come and gone there too…
Then we took over the next wall…
And then we (that’s the royal we, doncha know) took over this wall for my ‘Novembervent’ (after Octobervent)
Throughout all this I want to keep #Countingmyblessings, and the Facebook groups for those with breast cancer are deeply encouraging – yes there’s times when it can be a challenge as you realise people are on there at their most difficult times (and members do die) – so super grateful to those who come back later to talk about how their lives are post-cancer, and those who could be out the other side and remain on as group administrators!
It’s a weird time of waiting – don’t want to plan too much as need to remain flexible, don’t want to spend loads, but important to have things to look forward to – as someone who thrills at ‘new things’, adventures and achievements … aside from learning to rest… hmmm! I’ve got Homage2Fromage to look forward to next Monday evening, Younger Women Together the weekend after – now what can I do that’s nice this week too?
Meantime, it’s time to pop to the post office, get some fresh air/steps in, and then tackle another section of writing!
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.