I have been quite silent about cancer on this blog for a while … in fact the last one was when I was feeling super bleak about everything – I wanted to check out of life, work, everything … fortunately I had four weeks of annual leave booked and some life renewing time with friends. I’ve been far too tired to blog (and my laptop is misbehaving too, so which doesn’t help)… but I do find it incredibly helpful when people have read the blog, and we can move past the ‘head tilt, how are you really?’.
I disappeared down to the South for two weeks of annual leave, catching up with old Winchester friends (sleeping in in the mornings, not staying up super late, but managing to catch a lunch and/or dinner with someone most days). My parents decided to visit Winchester too, so I got to catch up with them, and my Bournemouth family before heading back to the North West. Seeing so many friendly faces reminded me why it’s worth the exhaustion and effort of treatment.
I’ve been having my bathroom done – part of the reason I wanted to be out of the house for 2 weeks to let them get on with it. I wanted to pay someone to decorate it, but why is it so hard to find someone who will get back to you – so I did the painting in small chunks myself – exhausting, but satisfying… and the house is so close to being finished now (my ‘safe bolt hole’). I then disappeared off to Greenbelt, very spiritually refreshing, a few days back in Manchester, before a very refreshing mini-break in Jersey. When you’re hanging out with people who don’t mind if you conk out in the middle of a sentence, don’t mind if you sleep a lot, and give you access to beautiful beaches and company …
So, I came back physically shattered, but mentally in a lot better place.
So, if you’re thinking of asking when I finish treatment, a reminder that I am now on treatment for life. The current treatment I’m on, I’ll stay on until it stops working – which we hope will be a while, but brain is trying to cope with the idea that don’t know if the cancer will progress in 3 months, 3 years or 30 years (and if you tell me we could all be run over by a bus, well yes, but is that bus sitting revving next to your face?!). We’re now 15 weeks since the evil chemotherapy finished … and had my eighth (every 3 weeks) Herceptin/Perjeta infusion earlier this week (about a 2-3 hour appointment, I just take my work with me). Ongoing side effects are fun as ever – fatigue being the most noticeable – insomnia/interrupted sleep doesn’t help, along with body aches and pains/sore feet, skin rashes/cracks/breakouts (they’re trying me on a boost of Vitamin B to try and help with that), bloody nose – and everything seems to affect the stomach 🙁
I started a new drug this week, Denosumab, designed to improve bone health (I have lifetime 20% risk of spinal fracture, plus potential early osteoporosis). This is given by an injection into the stomach every 6 weeks – the needle looked huge but think that may not be the one that went in… Likely side effects were said to be a rather ‘fluey feeling’ – anyway, was in bed by 8pm Monday and Tuesday, and definitely feel stiffer/creakier (stairs/slopes are ‘fun’).
Monday was also a date with the CT scanner (in the mobile unit this time). They’re unable to use my port, so had to have a cannula inserted (probably THE most stressful part of cancer aside from waiting for results/dealing with uncertainty/fearing death, etc.). As I was already in for treatment, the wonderful Laurel Suite nurses got ready to work with the 2 tiny veins in the back of my hand… with the help of warm water, a tourniquet, lots of patience, and hand-holding from another nurse Beth, Cheryl got it in first time! Appointment was 6.20pm, but I was finished on the chemo ward before 5pm, and was squeezed into the scanner earlier – that lovely ‘warm’ sensation as the contrast heads through (if you know, you know!) before crashing into bed. Results officially October 14th, but I know I’m on MDT for Monday if they come through earlier… Then I will find out how long before I should be due another scan – 3 monthly is normal…
I also had my Zoladex this week, hoping this may be (one of) the last. I’ve got an appointment with the surgeon for my oophorectomy on Tuesday, so hoping that means we’re all good to go ahead with the surgery in the fairly swiftly afterwards to whip the ovaries (and all that oestrogen) out. Thankful that Suzanne is coming with me to the appointment as the surgeon didn’t seem to have much clue about mental health/disordered eating, but as I’ll be out cold whilst he operates he can just get on with that. Been told no driving for 3 weeks post-op, and expecting 8 weeks to recover enough in body and brain to start to re-engage with ‘normal life’ somewhat (aka 8 weeks sick leave)!
So, I have carried on working (aside from a few chunks of time, and immediate treatments) throughout the past 2 years, and at my PDR we celebrated what I have managed to achieve despite all this rubbish! I felt I had no choice at the beginning as I was only entitled to 3 months sick pay, and had been told I would need to take 8-9 months for treatment, so was thankful that a process was determined to enable me to continue – and it helped to keep a sense of purpose going. I returned to physical work ready for the start of term last academic year, in a very limited capacity, but on the secondary diagnosis in January dropped back out of face-to-face. Thankfully, it was suggested that (with the surgery this term, and some need to mentally reset), no face-to-face work this year either, so distance supervision, research, bids, public engagement is in my WLM. I have applied to Vaughan Park for a writing scholarship for Spring 2020, which would mix work and spiritual/mental refresh – so if I am not awarded it, I need to think how I would gain similar much needed headspace.
I am, therefore carrying on working at home. I haven’t seen occupational health since before my secondary diagnosis so counsellor has been working hard to make me listen to the clues ‘work on what makes life meaningful’, ‘don’t feel pressurised’ – still keep trying to work 7+ hour days… Got things I want to get done too – feel the time pressure. We are also discussing if/how an 80% workload might look and how to make sure don’t end up working 100% for 80% pay. Encouraged to hear some manage it (esp via WIASN), and great advice from Jo VanEvery. If may never see retirement – take it one day a week now .. just about balancing the books (but thankfully Maggies have helped me get PIP/blue badge which is taking pressure off and making reduced workload an option). If so, would look at Friday – chance to sleep in/catch up on life before weekend – or see one of many vicar friends who seem to have Friday off (like today :-)) … and/or travel on quieter trains (still love the opportunity to travel but anxiety is ramped up on busy trains/managing luggage, etc).
So, lots to think about, lots been going in – in amongst much sleep!
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.