Not that we are necessarily huge fans of the term ‘journey’, but thesaurus not giving me too many options… though I do remember saying at the beginning, I describe myself on Twitter as a ‘Life Explorer’, so cancer is just one of the crappier sides of life to ‘explore’!
Recap: Diagnosis (30th August 2017)
I finally took myself to the doctors after noticing something weird at a bra fitting, then feeling ‘a bit of a lump’, telling one friend, so I couldn’t bail out – although I still waited too long because ‘I was busy’ (and I wanted to see a female GP, which took a couple of extra weeks). The GP put me straight on the ‘cancer pathway’, though at this stage she said it didn’t necessarily mean anything.
A week later (Weds), I was at the Bobby Moore Unit in Stepping Hill, undergoing clinical examination, mammogram, and ultrasound + biopsy (including armpit), and was sent home with the words ‘there’s a suspicious looking area’ ringing in my ears, fast-tracked for an MRI appointment the following Tuesday, with biopsy results expected Wednesday. By this point I had told a few other people, including my Mum, who agreed to come to the next week’s appointment, whilst I kept myself occupied by going to Greenbelt for the bank holiday weekend. No one was saying to me, but the armpit biopsy meant everyone (including me) was thinking ‘it is cancer’, but no one was saying this to anyone else! The copy of the surgeon’s letter I later got a copy of meant that I saw that he’d told the GP that he had ‘given strong warning shots across the bows’.
- Having to cancel a speaking engagement at St John’s College Durham on Fake News
- Breasts, boobs, whatever, do I really need to talk about them?
Recap: Surgery (21st September 2017)
Various tests indicated that surgery was the way to go first, and this happened pretty fast. On the day of diagnosis I was asked to decide within 48 hours whether I wanted to be treated in Manchester (or move in with parents for 6+ months), whether I wanted fertility treatment (chemotherapy often kills this off), and whether I wanted a mastectomy or a lumpectomy. It was an early start + 36+ hours in hospital before being sent home to recuperate (with the help of my mum for a coupe of weeks – yes, I wanted to stay in my own home).
- Waiting for Surgery (that post you write when you’re not sure that you’re going to wake up afterwards)
- A few things I wish I’d known before my surgery/mastectomy #BreastCancer
- Four weeks post surgery: pathology results
- Thinking about ‘waiting’, finance fears, and family support
- Celebrating clear scan results
- I read a load of cancer books, and another.
Officially from this point I have been NED (No Evidence of Disease) – the term typically used instead of ‘Remission’ these day, and any treatment from this point on is to try and stop the cancer coming back (I was Stage 3, Grade 3, 12cm tumour + 5 lymph nodes, so relatively high risk).
Recap: Chemo (1st December 2017 – 30th March 2018)
There was quite a lot of waiting, as I joined the Optima trial (which gave a 25% chance of not having what would otherwise be definite chemotherapy): after 4 weeks the results came back – yes, chemotherapy was required, and I would have a central line/portacath inserted for drug infusion, as my veins are so difficult to work with! I was more scared of chemotherapy than surgery, but as others in Facebook groups have said ‘it’s crap, but it’s doable’, and to-be-honest, much of the time it was a whole heap of small, irritating side effects (ear infection, eye infection, nausea, hair loss, bloody nose, insomnia, steroids, etc) – aside from the full of dizziness in week one of the first drug (3 treatments 3 weeks apart) – with the second drug (9 treatments 1 week apart)…and the painfulness of the cold cap (which worked exceptionally well).
- The treatment continues (treatment plan)
- I had a weekend away with Breast Cancer Care with other under-45s.
- Chemotherapy 1
- Nearly being admitted, 1 week in
- Being featured on Breast Cancer Care website
- New Year
- Chemo 3 (last of the EC)
- Extra surgery (fatty lump)
- Scanxiety, and a clear spinal scan
- Week 1 of Paclitaxel
- Week 2: Cold Capping and Wigs
- 5 Weeks into Paclitaxel
- Chemo on my birthday *Involved cakes and singing nurses
- Coming towards the end of chemo – oncologist chat
- Listening to ‘You, Me and the Big C’ podcast
- Celebrating end of chemo
- Removal of portacath
People were right, it’s crap, your immune system is shot, you sleep a lot, but you just keep plodding away day by day. I worked (from home) weeks 2 & 3 of of the first two chemos, then took time off sick til towards the end of March, returning to work on my journal article ‘Social Media, Peer Surveillance, Spiritual Formation and Mission: Practicing Christian Faith in a Surveilled Public Space‘.
Recap: Radiotherapy (25th April – 21st May 2018)
Three or so weeks were allowed between chemotherapy and radiotherapy, to give my body a chance to recover before being dosed with more treatment. Ironically, as I’d expected this to be straightforward, I found this much more stressful (and added a layer of tiredness) than chemo! Only 15 sessions, but EVERY day, and often having to lie in a strange position for quite some time, and having to be ‘reset’. I took 3.5 weeks off work for radiotherapy, although I ended up working on a funding bid for Macmillan to look at cancer/social media.
- Radiotherapy Planning
- Popping into work
- False start to radiotherapy
- Quarter of the way through radiotherapy
- A week on from radiotherapy
I also started Tamoxifen, a week or two before radiotherapy, and whilst radiotherapy was ongoing, I continued decluttering, and had a kitchen fitted:
Recap: Post-Hospital Treatment
So far, since being released from hospital, I’ve had a physical check-up at the Bobby Moore Unit, attended a play based upon discussions in the Breast Cancer Care Forum, spoken at a couple of events about social media at work; healthy social media policies – where I mentioned the overlap with personal ‘journey’ – and ended up being featured in Business Cloud UK, been featured in The Guardian and The Telegraph and on UCB Radio, attended the Engage Researchers Academy, and Georgette Heyer conference, and a couple of weddings, met up with a number of friends (including some new #BreastCancer friends), been on a couple of canal cruises with The Liquorists, had a lovely holiday in Porto… and had a fireplace fitted ready for winter (and yes, I’m really tired – no great surprises – not quite got my balance right):
What’s Happening Now?
So, right now, it’s all about the emotional fallout. I am currently halfway through the ‘Moving Forward’ course, run between Breast Cancer Care and the breast care nurses from Stepping Hill, and I’ve had 3 counselling sessions so far at the Christie (CBT/CFT) – I have always used work and food to distract, so we’ll see what comes out of this:
It’s a challenge trying to ‘reintegrate into normal life’ again, managing other people’s expectations, and my expectations of myself – and as the counsellor said, you’re trying out different things, knowing that there’s a ‘new normal’ to adapt to, and sometimes bumping into challenges as this unfolds.
I’m also officially ‘back at work’, although continuing largely with the ‘working at home’. I met with Occupational Health last week and because
- it’s not actually that long since I finished MASSIVE amounts of treatment
- I’ve got more new treatment to come (Zoladex (every month for maybe 2 years)/Anastrazole (every day for maybe 10 years) which also have side effects
- I’m struggling with fatigue – rarely out of bed for more than about 12 hours, and getting stressed relatively easily – especially by inflexible things with a short time-pressure.
I’m still waiting for the email, but she is suggesting that I only need to be physically at work for one (short) day a week, limiting pressures and teaching time (got plenty of research, public engagement, etc. to keep me busy). She originally suggested no teaching, but we think it’s a good idea to ‘get back in the ring’! I can’t really remember what else we talked about to be honest, so I’m awaiting that email!
All of these things may feature as their own blog posts, once I have a little energy, including the topic of ‘hair’ and ‘breast prosthesis’!
I’m still suffering with peripheral neuropathy (other friends post-treatment say this may not go away, breast care nurse suggests bringing it up in 6 months).
What Happens Next?
I have my ‘annual mammogram’ (on the one you have left, as one of the surgeons helpfully said) on 6th August, and will see the oncologist again in January 2019. Meantime, I’m waiting for a letter sending me for blood tests at the Christie to kick off the process to start on Zoladex and Anastrazole (basically to kickstart a chemical menopause), and find out how that affects me.
As the counsellor said, when I said I like to ‘be prepared’ – ‘you couldn’t be prepared for cancer, and you dealt with it’… so with that ringing in my ears… it must be nearly time for bed… but I’ve got a few things to look forward to, including another wedding, a trip to Jersey and:
- Singing along to The Greatest Showman
- Undertaking urban axe throwing, a prize from Ellie’s Friends
- I’m planning on going to Greenbelt (though not camping)
- I’m booked on the ABCD Retreat: Exercise and Wellbeing in September.
- I have applied for a Casting for Recovery retreat
- I’m a judge for Premier Digital Awards (and expect to speak at the conference) in November.
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; second edition in process) 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.