It was only just over a month ago that I was diagnosed with breast cancer – I had a pretty good idea it was likely the week before, but it took til 30th August for tests to confirm the diagnosis. It’s all happened pretty fast – one minute I was trying to finish an academic article for submission, starting to think about teaching prep, and stocking up meals ready for the start of term – the next – life is full of a whole load of new terminology, visits to the hospital, and next thing I know, I’m recovering post-surgery from my mastectomy (and lymph node clearance). I’m currently waiting for the pathology results to come back (next week), after which meetings with the oncologist will start, and the dreaded chemo will kick off (the only thing I was worried about with surgery was in dying on the table, whereas for chemo I am particularly fearful of anything that interferes with my brain capacity, causes nausea/vomiting, hurts, and messes up your digestive system… it’s going to be a FUN few months). So, yeah, I’m pretty chipper at the moment as I’m feeling better every day, and so far as I can see, am back at work today, albeit working at home!
I would like to have known what I was in for, so I’m sharing my experience here – might be helpful for others about to go in for surgery (so might include a bit of extra detail that might seem a bit TMI).
Pre-op tests the week before included bloods, ECG, chest x-ray, lots of chats about family history, current medication, past hospitalisation, etc.
I was convinced that I could work up until the last minute, and was working frantically on my journal article weekend before, and into the week. My surgery was on Thursday, by Tuesday afternoon the reality was hitting in, and waterworks hit. I did take a sleeping tablet that night and slept really well, which I hope set me up well for the operation day. Wednesday was a bit of a write-off, as I checked my will was OK, and that I had given my passwords to someone! It doesn’t matter that the doctors and the anaesthetist say ‘we do this all day, every day’, maybe I watch too much Casualty/Holby, but I should think everyone thinks, am I the one this is going to go wrong for?
One thing I was really pleased we’d managed to arrange, was for my mum to come and stay with me – she drove halfway across the country, with a slightly open-ended return date to look after me post-surgery. She arrived Wednesday evening, and we went out for a nice meal (no alcohol for me, but very nice Mocktails) at A Tavola, then early to bed before needing to get up REALLY early the next morning. My mum wasn’t able to stay, and was told to ring the ward after 1pm for a status update, but not to be surprised if the surgery went on longer than the anticipated 3.5-4 hours – she was also charged with posting updates to my Facebook page so friends could see – big cheer from one group at work when the notification I was out came up.
Straight on with the hospital gown, lie down and read a bit – something easy like Harry Potter, interspersed with various people coming to test blood pressure, ask questions, explain what would be happening (explaining the process helps calm my nerves anyway!), say where I was on the list, that the list had changed, etc. There was a socket next to the bed, so I was able to keep my phone charged (with a longer cable and stand), and that was locked away (along with my pre-existing meds) once I went down to theatre for surgery – and yeah, don’t stub your toe/lift your toenail just before you walk down… and it seemed worth wearing these pants! Patients are encouraged to walk to the theatre (so a dressing gown/flip-flops comes in handy here), where there were a few more more questions, a few more tears, and asked to get onto the trolley ready for the anaesthetist to work – after about 10 minutes, he joked “did you not get the memo to bring your veins” (and yes, I’d drunk water and whatever else it was they ask you to try) … eventually he found a small vein, said that would be enough to put me out, after which he would find a bigger vein.
Next thing I know, I’m blearily coming to, to a gentle hello from one of the medical team next to my bed – with a cannula plugged into my foot (clearly where they found a good vein). They check a few things, say hello, attempt to push me down the corridor (nope, gonna be sick), brought back, more meds. Next attempt = much better. Flop across onto my ward bed, they tell me things took longer than expected, but that’s not a problem, and they think they got everything they wanted to. My mum comes and sorts things out next to my bed – I’ve missed dinner but I don’t care! Rest of the night is a blur of blood pressure checks, drifting off, being sick, not caring that hospital gown was not done up at the back as wobble to the toilet. Based on advice from those in the YBCN group and couple of reputable websites I had brought a bottle with a straw, some cereal bars/snacks, eye-mask, ear-plugs, socks to keep warm – though I didn’t use any of those (only 4 of us on the ward, and they had straws/biscuits on ward)! I had extra books in case I got stuck in for more than one night, but couldn’t concentrate long enough to read more than a couple of pages – mostly rather blotto or reading my phone messages! Definitely useful however were wet wipes, toothbrush and lipsalve.
And don’t forget your comfort companion (present from my niece):
Preparing to go home was based upon being able to walk (shuffle) around, not being sick, able to go to toilet alone, blood pressure and bloods all being OK, so I got to leave at 8pm. They encourage you to get dressed earlier – useful for this was a button-up shirt, pull up trakkies, and flip-flops (nothing to do up/bend down for). The nurses tried out the post-surgery bra and give me some stuffing for it, along with a drain bag to fit the three drains and the PICO that my surgeon had placed. Earliest those were going to come out was Tuesday… Best extra tip, take a pillow/cushion to put under the seatbelt in the car. I couldn’t open the car door, was a bit of a wiggle to get in, and then couldn’t pull the seat-belt over by myself!
My mum agreed to stay until the drains came out – which ended up being Friday, not Tuesday (and that didn’t hurt – just a twinge as each came out as I’d taken codeine an hour beforehand!). We ended up back in the hospital Saturday morning as the PICO kept beeping (more dressings put on) – and for anti-nausea meds, and again Monday as I thought I had a lump of fluid – nope – that’s just fat that had been held up by the tissue we’ve removed (more dressings) – and no need to come in Tuesday. Side note, after anaesthetic and codeine, you might want to keep some prunes in the house.
For sleeping I can highly recommend a V-Shaped Pillow, surrounded by other pillows, and some Lush Sleepy. You’ll basically be sleeping upright, and you need another pillow to hook your arm over – as you try not to roll over on the drains. I spent most of the weekend dozing in and out, although we went out to the local park for about 10 minutes of sitting on the bench #freshair! After Monday, the nurse said sleeping was more important than the PICO, and to take the batteries out – worked out how to do that Weds night, then put them back in during the day. By Wednesday I was only really needing the codeine/paracetamol at night, and had stopped napping… by that point I was also ready to concentrate so books and Netflix came back into play. It was also about that time it seemed worth trying out the front-fastening bra which is all that could be done at this point!
Sat at home banked up by cushions, with the remote control within easy reach, phone charging to one side (lots of social media chat to sustain me). Tucked in with the crochet blanket a friend had made me, and with my arm looped over the cushion my cousins had given me. I let my mum arrange any flowers, bring me post, put all my cards on the wall (I’m leaving them up til treatment finishes!), bring me lots of water, and prepare quality food in smallish quantities – lots of protein and vitamins as emphasised by the BCN (Breast Cancer Nurse), help me with bits of dressing. Whenever we went out – which we did for short distances every day (5000 steps by the time she left Sunday week afterwards – including National Trust), I wore a poncho so I didn’t have to get my sleeves inside anything, though I still needed help getting it on/off my head. I stuck to shoes that were slip on/off for the first 10 days so I didn’t have to bend down, and did all my physio religiously! Gradually developing range to open/close car doors, get water from the tap, although can’t grip the bread to cut that (pre-cut = solution, yeah!) yet, and moved everything within easy reach. Got a housekeeper’s carry tray so could move around with least number of trips using my good arm, also a sponge for showering (dressings can be splashed, not soaked), lots of moisturiser for the surgical arm to help prevent lymphedema, and help with hairwashing from an early stage!
I’ve got other things scattered around, although some are not needed til chemo, massage cushion, and very much enjoying my ‘Octobervent’ calendar, put together by my 5 year old niece and her mum – something to look forward to everyday.
Now my mum has gone, I’ve made sure I’ve got the neighbour’s numbers, keeping in contact with other people on social media (publicly and otherwise), and just trying to make sure there’s something to look forward to each day, especially as I need to wait 3-4 weeks tilI I can drive again. I’m expected to keeping going into the clinic around twice a week to check on wound healing, have the wound drained as necessary, etc. Keeping my mind occupied with work is good for now – I’m not convinced that I’ll have enough brain capacity during chemo, but at this stage, am Keeping Calm and Carrying On with the work that I enjoy doing … and trying to wrestle this academic article on ‘Social Media, Peer Surveillance and Spiritual Formation’ intro shape .. and trying not to overanalyse it til the idea has gone!
*If I remember something else, reserve the right to edit the text/make a note in the comments…. or if you’ve gone through it, what do you wish someone had told you beforehand?
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.