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):
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!
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!
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 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:
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):
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!
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.