Categories
Cancer

[CANCER] A few things I wish I’d known before my surgery/mastectomy #BreastCancer #BreastCancerRealities

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!

Breast cancer awareness campaign in New Zealand

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-Surgery

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.

Post-Surgery

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):

Awaiting its naming ceremony … from my niece! Xx

A post shared by Bex Lewis (@drbexl) on

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!

At Home

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?

Photo from Unsplash, and in text.

Categories
Cancer Reviewer

#EmptyShelf17 #32-38 – Mostly to do with #BreastCancer

It’s been a long week since my last post when I was trying to distract myself from the thought of surgery the next day! I didn’t get through that next day without tears, but I did get through it! Very early start, lots of questions, tests, lovely gown, etc. but once the anaesthetist finally found a vein (yes, they are that bad) I don’t remember anything else until someone said a gentle ‘hello’ to my blearily open eyes in the evening. Surgery took 5.5 hours (longer than expected), and then an unpleasant night (with lovely nurses) followed. Friday was mostly checks and discussions as to whether I could go home (yes, you get sent home with drains in), and after more fun in trying to get bloods out before discharge, we got to leave just after 8pm!

The weekend is a bit of a blur of pain and sleep, but from Monday I started to be able to concentrate and move around a lot more – the drains are a pain, but my Mum has been here cooking for me, making my bed, washing my hair (all the things you don’t expect at 42, but I’ve been very grateful for), and I started to be able to read (I had already been on Facebook from Thursday evening, though had to abandon at speed when the nausea rose). Today is the first day I’ve not needed painkillers, so that’s good, and hopefully the drains will be out Friday, which will allow a lot more freedom and easier sleep – and then a couple of weeks grace before chemotherapy starts.

Over the past few weeks I’ve read a few books (a couple more to go), as well as managed to gently get out and about, so here’s some simple reviews (sorry, not as articulate as usual, I suspect!)

First I read…
B is for Breast Cancer: From anxiety to recovery and everything in between - a beginner's guideB is for Breast Cancer: From anxiety to recovery and everything in between – a beginner’s guide by Christine Hamill
My rating: 4 of 5 stars

This was the first book that I read after my own diagnosis! Thought it gave really helpful insights into the emotional side of cancer, and how that’s as important to manage (with humour and any other appropriate emotion at the time), and included a bite-size range of terminology that has since become quite familiar. It did freak me out about a couple of things – but what is there not to freak one out about a cancer diagnosis to be honest! The bit I laughed wryly at was “it doesn’t take 3 people to tell you that you’ll be well” – I knew as soon as the breast care nurse was introduced by the consultant that it was not going to be good news! Important to understand the need to balance too much/too little info which I’ve held onto since.

View all my reviews
Then I read…
Tea & Chemo: Fighting Cancer, Living LifeTea & Chemo: Fighting Cancer, Living Life by Jackie Buxton
My rating: 5 of 5 stars

I read this book whilst awaiting my own surgery date for mastectomy, and found it gentle, humorous and not hopeless. It deals with the reality of some aspects of treatment and suggestions to deal with some of them (left me questioning whether to bother with cold capping – still indecisive!). Tips related to food, keeping busy if that works for you – but accept that you won’t get loads done, ask for help, doesn’t ask ‘why not me’, learn to prioritise, Prosecco has better impact on hot flushes than red wine, and yeah, the steroids will increase your appetite … lots of useful links – and INGORE the stats, they are not helpful! Emphasises that later visits are appreciated as early diagnosis trying to process, and it’s a long road for which company is appreciated. Ended up chatting to the author on Twitter…

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After which I read…
#dearcancer: Things to help you through#dearcancer: Things to help you through by Victoria Derbyshire
My rating: 4 of 5 stars

A gentle short e-book, with an introduction from Victoria Derbyshire (who is essentially highlighting her full book that’s coming), drawing upon some of the voices from her community. Some helpful thoughts and tips for one about to commence ‘the journey’, including what’s useful to take to chemo, and how to hold onto ‘the happy bits’

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Then I read…
Run for Your Life: How One Woman Ran Circles Around Breast CancerRun for Your Life: How One Woman Ran Circles Around Breast Cancer by Jenny Baker
My rating: 5 of 5 stars

I’ve had enough concentration today to actually read – having had a mastectomy last week. This book is written by a friend – bought it earlier this year not realising how resonant it would be. I have found it really helpful to read – recognising a whole load of the emotions, the shittiness, but also hanging onto hope. I ain’t gonna run my way through any of this but there’s lots helpful to those thinking others don’t understand, and for those who have friends who maybe don’t ‘get it’ too.

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and most recently I read:
The Silver Lining: An Insightful Guide to the Realities of Breast CancerThe Silver Lining: An Insightful Guide to the Realities of Breast Cancer by Hollye Jacobs
My rating: 5 of 5 stars

I enjoyed this book, and found it gave hopeful insights into what to expect following the authors desire to hope for the best but prepare for the worst. I like her practice of seeking ‘silver linings’ every day rather than ‘woe is me’, and the sense that preparedness helped. Her ‘silver lining’ that (unusually) she experienced more side effects than most did that she can give insights into how to cope is certainly a positive one. Clearly the American context is different, but this was gently handled – does not shy away from the crap that is to come, but in the sense of ‘be practically prepared’ rather than ‘give up in the face of it’. Beautiful pictures too.

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To leaven things a little I also read:

Harry Potter and the Philosopher's Stone (Harry Potter #1)Harry Potter and the Philosopher’s Stone by J.K. Rowling
My rating: 5 of 5 stars

Multiple time of re-reading – perfect surgery recovery!

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and

The Boy in the DressThe Boy in the Dress by David Walliams
My rating: 4 of 5 stars

Well I can see why kids love this, and I enjoyed reading this in 60 minutes. Love children’s lit that takes the opportunity to challenge ‘the norm’ and allow feelings etc to be dealt with.

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Categories
Cancer

[CANCER] Waiting for Surgery #BreastCancer

So, I’m sat in bed, with the alarm set for 5.30am, with a need to be at the hospital for 6.30am, praying that I am first on the surgeon’s list tomorrow and honestly, just praying that I wake up at the other end of it, minus the cancerous lump that has become a bit painful to-be-honest. I don’t know how much I’m going to blog about this, but sometimes I clearly will – it’s part of what I do… and I hope I manage to do it with a mix of vulnerability and humour, wisdom creating lack of overshare, and with a touch of the educational!!

After dinner with my mum at the excellent (but very small, pre-book if you don’t want 9pm dinner) A Tavola, and a Facetime with my fave office buddy this evening, she suggested I blog about Just Eat being down and her ended up eating rice noodles with bean sprouts and chips in desperation but maybe I’ll write about a couple of other things whilst still rather awake … though Netflix may be calling, and maybe even some sleep!

What can I do to help?

That’s a question I am getting a lot, and I am truly appreciating the outpouring of support coming from so many different directions, though I think the postman is still quite bewildered! To be honest, I don’t really know yet, so having people around who are flexible but don’t necessarily expect a lot back is key!

  • Meals, meals, meals, meals, meals appears to be the main thing that people who have gone through this appreciate (and a friend bought me a spare freezer off Gumtree, so there’s a bit of space now – I was preparing for what is usually a tiring start of term by prepping easy meals, so a bit ahead on that one! The BC Nurse says that I need extra protein and vitamins … so don’t everybody bring cake!
  • I won’t be able to drive for a few weeks post-op, and possibly may struggle to/from chemo in the longer term, so I’ll be looking out for lifts!
  • Being able to connect with people, people connecting with me especially prefaced with *Just thinking of you, no need to reply kind of messages. As I think I said before I fear everyone getting bored, and being deluged with people (when no is a hard word!) – I do love company – most of the time!
  • After reading various stuff from within the excellent Facebook groups that I’m in, there’s a few ideas on Amazon to manage surgery recovery, and the side effects of chemo (no one knows which are going to affect you til it starts).
  • We have tried setting up a ‘MyCancerCircle’ using the app, but I think that with (nearly) everyone on Facebook, I may revert to that, with maybe a calendar/request list app or some such…
  • I am loving the thoughtful cards and gifts that I’m getting in the post, the drawings by children, and messages online, and nearly cried (again) last week when I said that whilst I wait to see how long things go on for, I was cancelling all my charitable direct debits to: TearfundTrussell TrustLICCRefugee ActionAlzheimer’s Research UKCancer Research UKThe Bible SocietyChurch and Media NetworkNSPCCLivabilityMindChristians Against PovertyGreenbelt Angels, (with Embrace the Middle East via Give as You Live) and friends have stepped in and covered every one! Hopefully will be able to pick them up again next year, but if anyone wants to add their support – feel free!

Those in the Facebook group(s) are very generous – anything that is pass-on-able, people seem to do so, whether it’s advice, experience, or practical goods – taking my ‘drain bag’ tomorrow!

What do I fear?

Well, aside from the thoughts that pop into your mind at unwelcome times such as ‘will I wake up from the op’, and ‘what if it has spread elsewhere’, most of them are more mundane!

  • Maggie’s, Manchester

    Losing my independence – not sure if anyone’s noticed, but I’m a pretty independent woman – my mum’s coming for the next week, and I’ll need to get better at asking for help, and maybe some gentle reminders that I don’t need to do it all on my own! People keep talking about this being life-changing, and mostly I’m kind of resisting that… but in ways it sneaks in that it is – especially when I popped into Maggie’s yesterday – that’s a very warm, comforting place – we need more of those!

  • Any impact upon my brain function – chemo brain is a very well known side-effect. For my mental and identity health (and financial), I am hoping to do some research/writing on ‘good weeks’ but we’ll see. If I need to let it go, I will have to … but some struggle afterwards.
  • Any long-term disability (note, I’m not so worried about losing this bit of my body, or even, at present – the hair, but brain/body function) – especially resulting from the lymph node removal – higher risk of Lymphedema, and any loss of capacity on my left-side.

However, as comes through over and over again – cancer is something that has to be dealt with appointment by appointment, treatment by treatment – but you know, when you’ve lost control of something you want to try and feel prepared. Probably look back at this in a few months time and think “hah, you were worried about that!” but, you know…

Anyway, my alarm goes off in under 5 hours, better attempt to get some sleep, though the operation is 3-4 hours long, so I guess I’ll sleep then, and most of next week (and I slept very well last night thanks to Boots!). Results should come back about 2.5 weeks later, when I’ll get to meet the oncologist (who’s from The Christie), and find out exactly what they want to do with my treatment over the following 4-5 months…

Here’s to sleep, and to seeing you guys tomorrow evening online (unless I’m not in that headspace, in which case you can enjoy my mum Facebook’ing on my behalf!)

Food Photo by Eaters Collective on Unsplash

Cover Photo by Piron Guillaume on Unsplash

Categories
Cancer

[CANCER] Breasts, boobs, whatever, do I really need to talk about them? #BreastCancer

Unfortunately for me, who’s quite happy not to draw attention to mine, I have spent much of the last few weeks with mine being poked, prodded, examined, mammogramed, ultrasounded, biopsied, and otherwise examined… and next week I will become a ‘uni-boober’, with my entire left breast and lymph nodes being removed in surgery at Stepping Hill Hospital. Once I got over the initial shock, I have developed quite a sense of black humour about various aspects of the process – including writing about stuff I’d rather not necessarily, because I’ve encountered such a lot already I would never have thought about – so check yourselves and, like mental health problems that I already have, #talkaboutit!

In the interests of demystifying some things, as I’ve found helpfully from Victoria Derbyshire, I’m writing a few thoughts (and it’s quite therapeutic) – some will say too transparent, but hey, it’s my blog/my body:

What breast cancer looks like:

I’ve been a sporadic checker at best, but there’s enough information around reminding you, including on my Facebook feed, that prompts a reminder. This picture is one of the best diagrams that I’ve seen as to what to look out and feel for (and blokes can get this too, along with prostate cancer):

Breasts with cancer depicted as lemons
Source: http://www.libertimagazine.com/wp-content/uploads/2016/10/a-lemon-boobs.png

I have wondered if I could have spotted it earlier, as it’s quite a large mass, and I know a couple of times I’ve woken up thinking that feels a bit uncomfortable, but it was in the midst of a busy summer that I noticed A1 (thick mass), and of course thought it could wait for when I was on leave – and whilst going for a bra fitting noted B3 (nipple retraction) and thought something’s NOT RIGHT.

Entering the system:

Once I made it to the doctor, who undertook a physical exam, she agreed there was something that needed looking at, and the word ‘cancer’ was first mentioned in terms of ‘cancer track‘, which ensures that everyone is seen by a specialist consultant within 2 weeks. B3 concerned her more than A1, as it indicates that something large is pulling…

The next day, I got a phone call from the Bobby Moore Unit *not the Booby Moore Unit* which opened in 2005, encouraging faster treatment as Bobby Moore left it too late for prostate cancer. I feel in good hands there! 

The next week I was there for the first meeting with a consultant. I’d hoped for a female doctor, but I’m clearly going to have to get used to being seen by a mix. They seek to retain your dignity with a ‘hospital gown’ although I have to say this is the closest thing I can describe it as similar to a vicar’s bibstock (minus the dog-collar):

Visual exam, mammogram, ultrasound, biopsy (ow!),and then a meeting back with the consultant that ‘suspicious areas’ of around 3cm + 1 lymph node have been found – this was the ‘warning shot’ he referred to in his letter to the GP, although one still hopes it’s just benign or a cyst! Blood tests were taken to ensure kidney function in preparation for an MRI… the following week we attempted an MRI, but I’ve got hard to find veins, so that didn’t work.

I went to both those appointments on my own, but decided that for the next one I needed to not do that – so my mum travelled halfway across the country for both next appointments!

Finding a diagnosis:

The next appointment it was confirmed that it was Grade 3 (fastest growing, we don’t know stage until after surgery), andI was asked to decide if I wanted my eggs harvested (never particularly wanted children, but does suddenly make you question) because chemotherapy typically brings on the menopause *who knew that?*, and to consider if there were enough people in Manchester to be supported here, or whether I should go and live with someone else to be supported for 6 months – thankfully Facebook (visible only to ‘friends’) showed up in their support, and I can remain largely independent (when I read about people still looking after their kids and normal work through this – wow – kudos!). I was also asked to start thinking about whether a lumpectomy or mastectomy.I was warned that I would likely need surgery and chemotherapy and this would take 4-6 months, possibly up to 10 months if radiotherapy required.

The mammogram wasn’t entirely clear (apparently I’m ‘young’ (just about, up to 45, I think), so harder to get clear images), so we had another go at the MRI. That’s a classy process, and the oncology team quickly found a vein for the cannula (dye is pumped around the body), and 45 minutes of trying to lie still whilst nose decides to itch, you realise you’ve lain on top of part of your gown, etc. within a very small space:

The following week, back with the consultant, the MRI confirmed that it was a 2.8cm (pre?)cancerous mass, and that one lymph node has visibly been affected, plus two other small areas – which would require further biopsies, etc. unless I had already decided on mastectomy (I had, it reduces the chance of reoccurance) so surgery will deal with that. One test came back indeterminate as to whether it was HER-positive (the infamous Herceptin that everyone’s heard of), so they sent that off for a more expensive test. The MDT (multi-disciplinary team) meet on a Monday with an oncologist from the Christie to discuss cases, so yesterday, I rang to check whether it would be surgery first (if HER negative) or chemotherapy first (if HER positive) – it’s surgery first, and that will be happening 21st September – ironically the hardest part for me (as I’ll be knocked out for most of it) will probably be being there for 6.30am *not an early bird!

Thankfully it’s not Triple-Negative, which means they can’t find a cause and just have to treat and hope for the best – so it’s hormone receptor positive.

Preparing for surgery:

Today, I’ve been at the hospital most of the day (rather than at the departmental meeting!). A lovely friend came with me who’s already been through the process and come out the other end (and I had other offers). We talked through the process for the surgery, including mastectomy (no reconstruction at this stage) and lymph node removal, things to look out for, support needed post surgery as I should only be in one night (two if complications) – so my Mum is coming back up again – she can cope with a grouchy me that the nurse warned me I would be, right? Surgery should take around 3-4 hours, and will be given ‘drains’ for the lymph fluid, and I need to ensure that I’m moving to avoid lymphedema. They expect that after 10-12 days, you’ll be feeling back to normal – and if that was it – you’d start heading back to work. Unfortunately, as I’m  ‘young’ and it’s affected my lymph nodes, it’s chemotherapy too – but apparently we’ll talk about a couple of weeks after surgery… but it is likely to involve three lots of EC and then either 3 lots of Taxotere or 9 smaller lots over a weekly basis… so that could be any time from 16th October – advised to get lifts to/from chemo! I then went to talk through medical history, blood tests, ECG, chest x-ray in preparation for the surgery, then I can go home and “forget about it” #haha til next week… I’m trying because I’ve got a journal article I want to complete!

Work

I have to say that Manchester Metropolitan University have been excellent so far (no wonder they won a gold award for disability standards). Once it became clear that I had a diagnosis (I was still on leave), I contacted my team leader who immediately swung into action and said it’s all about #teambex getting well, and everything will be sorted at MMU. My teaching has been taken off me for the year (no guarantees how I feel, plus chemo knocks immune system), but we’re in discussions re having flexible plans for research, which should help financially/mental-health wise – and can be done at home, in having a focus other than CANCER! I’ve talked to HR, our new Head of Department, senior professors, and had messages from all kinds of people (and cried over several of them when I went in 6 days after diagnosis). The intention seems to be – focus on getting well, we’ve got this, and come back fit and fighting next September for the 2018 intake! I had (unsuccessfully) applied for extra research hours this year, so the dark humour kicks in with ‘there are easier ways to reduce your teaching workload’!

I am incredibly thankful that I’m in a permanent, relatively well-paid job, so get some sick pay, although it’s still going to be quite a financial knock – no, I don’t have any kind of insurance for that kind of thing, and I’d been steadily spending on getting my house done (thankfully it’s at a stage where I can stop, and start again in future), but I lived as a student for long enough so know some tricks – and people are offering to cook, take me out, and give me lifts! Nationwide (my mortgage company) have also been very helpful, with a specialist support scheme, and an ability to take a payment holiday once sick pay reduces. If there are complications and it goes on past being able to do any work for 6 months, that’s when it becomes more difficult, but ‘one day at a time’ appears to be the mantra.

Still working out quite what it means for these events.

Friends

Friends have been fabulous… with my various apps pinging themselves off the hook – lots of good wishes, and I think the postman wonders what is going on, as well as physical visits, flowers and takeaways! In a day of very little physical post, it’s another small bonus (along with free parking at the hospital, and free prescriptions for 10 years) – cards, pictures and thoughtful little presents – some practical, some a bit daft! I’ve got a mix of concerns – will people get bored and I won’t see anyone, or will I see so many people I’ll get no headspace! If the number of people offering meals is correct – then I need to borrow an extra freezer – and I’ve had a few offers of spare rooms if I want to change the walls I’m within!! People keep asking what they can do, and to be honest, I don’t really know yet – but based on a little reading – I’ve put a few ideas together on Amazon. I thankfully have a cleaner (best £15 I spend each week) and Netflix account, but if anyone wants to do washing, gardening, decorating – feel free!

I’m playing with a couple of apps to see if can organise practical help and visits so it’s not all or nothing – and allows me to hide away immediately post-chemo as many say that’s when you don’t want to see anyone:

    • MyCancerCircle <edit 14/09> – this one seems to be working better than the other – if you want to help with meals/visits, etc. helps me not to repeat myself and say what I need!
    • Caring Village

Anyone who has a cold, or a potential cold, will be asked to stay away to reduce risk of infection – but otherwise the antiseptic handwash is at the door for visitors!

I’ve already had my hair cut short in preparation for chemo hair-loss – the question is to cold cap or not (adds 2 hours, quite painful, and doesn’t work for everyone) – so last weekend, my cousin, whilst we were out looking for a dressing gown and baggier PJs, tried some wigs on (haven’t decided on that yet):

Which would you put in me in? #breastcancer #mayormaynotwantawig

A post shared by Bex Lewis (@drbexl) on

Research and Digital

The Breast Cancer Nurse (BCN) and consultant gave strict warnings about what you might read online – “you’re an intelligent women, download some academic papers” (as did other friends, as typically the stuff you find are big pharma conspiracies, and random diets that mean one “doesn’t need chemo”) – there’s some interesting research in that re trusting information you find online (of any kind). I couldn’t really read anything until about 4 days after the initial diagnosis – and then read the Breast Cancer Care file I was given, along with B is for Breast Cancer (which had short useful snippets but left me a bit panicked about how fast things might happen, and cording). Later I read Tea and Chemo (which I found gentle, humorous and not hopeless, and giving the realities of going through treatment), and Victoria Derbyshire’s #DearCancer (free download). Originally when I was diagnosed, I thought I was going to turn my research skills to cancer, but actually, the medical team are the experts – so I’ll read a bit at each stage, and if I’ve got brain cells, I’ll work on my own academic research (which of course is digital).

I’ve joined a couple of secret (as in you can’t see members/content unless you’re a member) Facebook groups (YBCN and Breast Cancer Buddies UK), both well used by others I know – and that’s enough for now, as I already have my own secret group where I can whinge about life with a small trusted group of friends, and another group with Beyond Chocolate which already looks at body image – which I spoke about at Greenbelt whilst I was waiting for my results in Kate Bottley’s session in the Red Tent. As with everything on Facebook, there’s a mix of helpful information, and people using a safe space to vent about side effects, etc. and thinking “oh my goodness, that’s a possible side effect too, oh great”! Otherwise people will respond with encouragement, own experiences, support those further behind the journey, pass on no-longer needed items, etc. and recommend places for ‘freebies’ – including Knitted Knockers (including an aqua version, once I’m allowed to swim again post treatment), Look Good, Feel Better, and bags full of things that will help with side-effects of chemo.

I’m also looking at apps – I can’t get Caring Village to download, but the My Cancer Circle (part of Lotsa Helping Hands) is being played with. Flower is an offer/receive so I think less suitable in terms of managing a calendar. Macmillan has an app for managing meds and appointments, whilst Becca is an app provided by Breast Cancer Care for those who have finished treatment and need to transition back to ‘real life’:

Breast Cancer Awareness Month is coming up in October, which means that those random statements appear – and I like this reaction. The more people can be open, the more it demystifies it, removes the pitying looks (or shock when people see you minus hair, etc), and allows you to ask for help – or tell everyone to go away!

I’m sure there’s other things I meant to say, but that’s quite a lot for now! People keep asking lots of questions, so I’ve tried to summarise a number of them. Overall I’m feeling pretty good, well-supported, acknowledging the fears (mindfulness), and once I got past the initial shock of the first 5-6 days – ready to kick-ass! Thanks to those who are being part of #TeamBex through physical, digital, practical and prayerful support!

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Cancer Speaker

[SPEAKER] Fake News at @StJohnsDurham

Today I was due to speak at St John’s College, Durham, as part of a panel addressing Fake News, but have been unable to make it, so sharing some of my (unfinished) prep here. Reason here:

Greenbelt Panel

I listened to an interesting panel on fake news at Greenbelt on Monday, a few thoughts from there:

  • Reuters looking at trust in the media: nationally around 41%, although another panel (Edelman?) said only 24%, so opening question was should Britain distrust the media as much?
  • Vanessa Baird from New Internationalist: Good to use critical judgement in assessing the media, and not surprising that people do distrust the media with e.g. phone hacking/expenses scandal, etc. Feels Levenson = not enough accountability and too many cosy relationships. Blanket distrust, however, is dangerous, so ‘we should support those who are doing a good job’. Follow the £ and see who is paying for stories. Be particularly aware of native ads, advertorials and sponsored content, and ‘how lies are hugely profitable’.
  • Peter Oborne from The Spectator/Daily Mail, etc with 30+ years on national newspapers, feels that they hold politicians to account and expose scandals, feels that there have always been attacks on the newspapers by the rich & powerful, doesn’t want state regulation of the press or HackedOff, and that fake news is largely caused by the internet and social media.
  • Jack Monroe who now writes for The Guardian, got into journalism by accidence. Says are many stories going untold, and that accuracy and fake-checking are the key duties of a journalist, and that journalists should hold each other to account – triple sourcing everything. She reads 7 newspapers a day to understand what other angles are being taken – a duty to tell the truth, even if its not our own truth – what we write has an impact on real people’s lives.

A lot of discussion about how far it is possible to fact check, and where the boundary for responsibility between facts and opinions lies. Can’t always meet with people face-to-face to check, so often rely on others on the ground to check stories out, use NGOs (PO says don’t they have an agenda, VB says not used verbatim but are A SOURCE, importance of citizen journalism), depends if are doing analysis or breaking news.

The bit I was really interested in – social media – PO said that thinks social media has been disastrous, not the democratisation first expected, that it’s undermining the business models of the newspapers who now can’t afford staff. Couldn’t work out whether was admiration for Trump in that he can bypass the national newspapers and reach out straight to his supporter base via Twitter. JM was also not a fan of social media – that we exist in an echo bubble, talking to people we like/agree with, and sharing stories without checking the source, and reinforcing our existing viewpoints, whilst cherry picking from a range of sources. VB said potential for democratisation, but it’s not really going that way – the echo chamber gives the illusion of diversity, but often reinforces things first published in the tabloid press – opinion pieces often set the tone for what is seen in social media.

I am more in tune with this idea from earlier in the festival, but it does take an active engagement with who you follow, rather than defaulting to an echo chamber:

VB raised the question of responsibility of digital platforms, which pretend not to be publishers, but are mechanically responsible. Says they ‘escape scrutiny’, ‘keep us hooked’, and are ‘generous with their support’ in keeping us online. The freedom of the internet, how they are funded, what they fund, needs to be looked at. PO then referred to ‘the social medias’ and ‘the facebooks’, and emphasised that Trump’s tweets are ‘politically meaningful’ and can’t be ignored.

Durham Questions

I was asked to prepare the following questions, although hadn’t got quite that far in detail:

  • What is the impact of fake news on your sector/businesses? *Education or church? Has affected every sector.
  • Do we have a responsibility to manage fake news? Every one of us has a responsibility to look at what we do, and yes we do.
  • Is there a distinction between big scale media/corporate and political use of news/sharing and how ordinary citizens use it? Different scale – big companies have more impact and more resources so need to take more responsibility (including the social media platforms); each of us has a responsibility as each of those small shares, etc. that we do makes a difference (see slide 20 re what makes us share).
  • What are the potential implications of a post-truth society in the future? Or are we already in it? It feels like we’re already in it, but how different is it from historical eras (see this Telegraph article). Media studies, etc. should be back on the menu, become part of PSHE, each of us needs to look at what/how we are sharing, and call for appropriate regulation, etc. Typically about culture, and tech is human-created.

Note, as a historian, I would say that the notion that news has ever been without bias doesn’t work, although digital may have assumed a different scale, and Brexit/Trump have brought ‘fake news’ into the mainstream.

I am struggling a bit with the continual equation of ‘fake news’ and ‘propaganda’, as propaganda (as you’ll see from my PhD) is one of my research areas. Propaganda is officially ‘neutral’ (as is social media), it is how it is used that is important (as with social media has certain affordances/constraints). Propaganda became a negative word in Britain after WW1 when people realised how much truth had been withheld, and how they had been fed ‘fake news’ about ‘the hun’, but in other cases, it is about the angle that is taken, which is not always negative, so want some more thought put into the distinction.

Whenever I’ve been asked for comment in the press, typically get a call from the producer/journalist wanting to know my angle and seeing if it fits with what they want, what they already have, although will also (mostly) change tack based on what might say if is not something they have already considered.

Picked up Post-Truth: How Bullshit Conquered the World by James Bull (Biteback, 2017) at Greenbelt too, though not read that yet.

Wakelet Collection

I’d been collecting stories on Wakelet (and some academic articles stored in Dropbox although didn’t get to those either). Some of the thoughts I picked up from reading those:

  • ‘Fake News’ became a term after Trump’s first press conference as President-Elect in Nov 2016, tied up with Brexit/Trump – versus ‘the establishment’/conspiracy theories – all gain massive media attention.
  • 2016 – a different scale to ‘propaganda’, etc as social media interactions and algorithms = hyperbole for the US election – polarised/polemic/global.
  • Distorting truth for emotional persuasion and action. Not always political, often an economic agenda for making £/$ from content sharing.
  • Internet has enabled low cost for entry barriers, building truth with audiences, law/regulation harder to enforce.
  • Telegraph: “… in an atmosphere where you never know what might happen next or what to believe, you’re going to be more receptive to hyperbole and truth distortion.”
  • Importance of headlines, especially for online news – Buzzfeed demonstrated how these outperformed ‘real news’. Incendiary stories gain attention, strong headlines get shared/go viral, and even if FB, etc shut down on a story, easy/cheap to set up another.
  • 5 types of fake news: intentionally deceptive; jokes taken at face value; large scale hoaxes taken seriously; slanted reporting of real facts; no established baseline for truth.
  • Did Facebook, etc. win the election for Trump – difficult to measure but academic research shown that a Facebook fake article would need the same persuasive effect as 36 TV ads, so a ‘menace not a game changer’, but real concerns for countries with far-right growth.
  • There are a lot of independent fact-checking organisations, e.g. Snopes, factcheck.org that should be used.
  • Avoiding filter bubbles takes work but: use a diversity of media sources’ use search and other sources; seek out alternative perspectives that you disagree with; don’t unfriend/block those you disagree with (except trolls); be skeptical and fact-check. Nesta believes that those more interested in politics are typically more skilled at this and should coach others – online networks can be more divers than face-to-face – emphasises individual responsibility.
  • There is no easy technological ‘quick fix’, but the global tech community can look at methods – needs human thought. Difference between stories with some truth but based on unreliable sources, or deliberately false stories designed to mislead. We need to fact-check (as we should always have done), crowdsource responses via e.g. Snopes, news outlets as a whole need to look at what they do, use AI machine-learning to highlight stories that may need human fact-checking (e.g. Robocheck from Fullfact), need reliable open data sources. More use of creative commons, Github, etc. building on each others work rather than privatising everything. Digital literacy and education are key. Look at big data, and consider tech both a cause and a solution.
  • Tony Watkins considered some biblical verses that are relevant (and has written other stuff), talks about social media as a news source and growing distrust of the establishment, the scale of possibility – anywhere/anyone – Trump was blatantly untrue but resonated. The way that revenue has become so key for newspapers online means virality has become more important than truth/quality. Are fake-news sites/farms set up in (Eastern Europe) which are quick/easy to set up/duplicate/share, etc. Clickbait and headlines are key, and careless/unverified reporting is problematic. 23% of US adults in a Pew survey had shared fake news, knowingly or nowt. Sharing = social proof, often emotional, cascade of information that can be difficult to stop. Danger of confirmation bias, we reject the thinking that challenges us, and FB algorithms, etc. can reinforce that. The church has a prophetic role to ascribe to biblical truths, and seek truth in the world.
  • Care with automated accounts, bots, etc. Bots can be used harmlessly, but Twitter, etc has a responsibility to look at how their platform is used. If lots of fake accounts/bots push the same story fast, it gives the impression that that story has more support than it actually does. Their current power lies in the fact that few know that they exist.
  • Government is looking into it this year, differentiates between echo chambers (own viewpoints) and filter bubbles (automated content), as large numbers getting their news online, and a lot of reliance on algorithms, although also highlights human behaviour. Research shows that its not that simple and we are still exposed to attitude- changing information, with diverse social networks spread over widespread geographical regions. No clear definition of fake news, but wants Govt action to be industry-led, drawing upon regulation and user education.
  • Content hosts have a responsibility: verification processes; banning false site;  advertisers control where ads appear; remove £ incentives for false information; media literacy for consumers as content distributers.
  • Internet/social media = amplify speed/reach of information, and in speed reading, can forestall critical engagement. We have moved from a commitment to storytelling to content marketing ‘where distortion is a priority’. Soundbite clips get well shared, rather than full documentaries, but YouTube/Netflix, etc give access to wider set of voices which mainstream broadcasters don’t really take up (e.g. re Vaxxed/MRR/autism).In Lumiere (first film) – would factory workers leaving the factory be ‘fake news’ as was ‘not real’. The conflict between the free press and authoritarian leaders = age old. Post-truth not a new thing, but entered mainstream use in 2016. Broadcasters, etc can influence the ‘truths’ audiences see through their editorial and commissioning choices. 
  • Bubbles are not new to social media – we’ve always mixed with certain class, gender, etc. bubbles … 2-step flow model – key opinion leaders pick up, share and amplify a story – as have always done. Social media can make the message and how it is created very visible, unlike the press. Novelty, speed and shareability… well researched and documented tends to be less shared! Digital have lost some of the clues that the physical form gave in distinguishing fact/fiction? Retraction is not really visible, fake news can just ‘disappear’. Social media can amplify spread – choices by system designers and regulators rather than tech affordances! Complex – but how do we learn to read the news? Why do we not regulate social media? How do you fact check before sharing?
  • Rewards clicks by volume so more sensational news wins… programmatic ads alongside bogus content still gets ££ so needs looking at… cheap to produce so fake news is £ rewarded.

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