Despite attempts to keep life ‘as normal as possible’, it really does feel like this secondary diagnosis has shrunk my world in the way that the primary diagnosis didn’t. The impact of having to undergo further heavy duty chemotherapy and radiotherapy less than a year after finishing the first lot has had a visible impact upon my energy levels, and I am also noticeably struggling more mentally than I did before, trying to keep myself ‘up’ so as not to sink entirely into a pit! Love it when people send stuff like this:
What does a Stage 4 Patient look like?
There was a great piece written for Breast Cancer Care the other day:
Many of us have been living with secondary breast cancer for several years and are living well, busy living our lives with a life-limiting illness. Yes, we experience side effects, pain and daily challenges physically, emotionally and psychologically, but we are living. We still laugh, have hopes for the future, many of us still work, have children, partners, families and friends and we contribute daily to society.
Often I also feel as my other friend Jo does (and she’s 5 years down the line):
Just dropped something off with someone who knows me
“How’s are you? You look well?”
Do they really want to know how I feel?
Lack of sleep
“Yes I’m fine” ?
— Jo Taylor (@abcdiagnosis) June 28, 2019
We want to be #busylivingwithmets, but sometimes it’s a real challenge – in amongst all the treatment for bone mets!
What’s the impact?
The fatigue and the impact on my mood, which keeps nose-diving, is incredibly hard to cope with. I’m learning to ride out the waves a little more, and speak out on social media – there’s usually someone online at any time of day or night to pop in and say – we’re thinking of you – and you don’t have to be ‘up’ all the time! Breast Cancer Care has some advice to give:
Everyone knows what it feels like to be tired sometimes but if you have cancer-related fatigue you may feel like you have very little energy. You may find it difficult to do simple everyday tasks and it may stop you from doing things you want to do. Everyone’s experience of cancer-related fatigue is different. Know your limits and don’t expect too much of yourself.
The thought of fatigue lasting for years is scary, but is a true possibility … I keep waiting to get back to some kind of normality, but as Peter Harvey says in ‘after the treatment‘, there was never going to be any going back to normality, and now that I’m going to be living with treatments every 3 weeks, along with other treatments and appointments, and their side effects, then I have to find some way of living with it… although of course I need to listen to my team at work, my counsellor, my nurses, my friends, and that message above don’t expect too much of yourself: my body has been through a tonne of treatment (with docetaxol only 5 weeks ago, and body readjusting to Zoladex and Exemastane, whilst Herceptin and Perjeta continue), and as this post succinctly puts it – cancer is an ’emotional head fuck’ – just the word, whether you’ve “just” had something simple or have had the worst diagnosis:
My sleep is very interrupted (I can’t rely on zopiclone every night), and days are quite short, waking up late/to bed early, with limited concentration during the day. This makes my life feel very small:
- I would like to meet up with more people, but I have always been friends with busy people, because I have always been busy myself. If I want to, I have to find the energy to arrange it – one way this works is that I try and get a walk in every day (if not a short gym workout/swim, etc.) so meeting up for a gentle walk works.
- Heading out to events has to come with a level of planning – managing energy the day before/the day after, and considering whether I’m safe enough to drive, or should use another mode of transport – for example, this weekend a good friend has a 40th an hour’s drive away – at present we’re not convinced I’ll be safe to join in (we will do something else, but still, it’s frustrating when you’re someone who likes to celebrate things with people).
- I love to travel, but this is now much more complex – getting insurance that will cover me, fitting around my 3-weekly (and other) appointments, and it will always be dependent upon how my (3-monthly?) scans are going – if it’s good, then all systems go, if not, then it’s back into the treatment round (that fear of it not working/being elsewhere is always going to be hanging around). I am, however, applying to go to New Zealand for a couple of months for a writing retreat, which will include some serious juggling but … In the past I’ve skied, I’ve sky-dived, I’ve scuba dived .. my back remains at risk of fracture after radiotherapy, and my bones in general are at risk of osteoporosis so… glad I’ve already done those things TBH.
I have a scan this Thursday, with results on 15th, to see if current treatment has/is working.
- The energy to prepare (good) food, do basic household tasks, fit in rehabilitation exercise (20 min gentle workouts for someone who used to run 10k and do circuit training followed by ab-so-lution!), etc all needs to be considered and managed. I have just been awarded PIP, which means that I can now cover some extra travel expenses, my cleaner who is now a necessity rather than a luxury, and hopefully get a gardener, get house jobs done rather than having to rely on friends (I’d like to be social rather than always be asking for help, although I am being encouraged to keep asking for help, sometimes that takes a tonne of mental energy too.
- Work has always driven me, and in many ways it still does. If I’m being paid full time, I have to keep reminding myself that I should be on a phased return. One of the things that I’ve found a lot more this past couple of years is that I keep myself going by setting targets, and where I would have wasted time on procrastination, I pick a task for the day and work at it til I’m out of energy. It’s frustrating, as I don’t see as much of my team (though we keep in touch digitally and socials), don’t have as much energy for networking which really feeds into our work, am not doing any face-to-face teaching, but I am still contributing (reminds self, my work is valuable). I’ve wondered if I’ll cope with academia (when I did 50+ hours a week before diagnosis, and my brain could cope with serious multi-tasking), but I’ve tried to leave academia several times before, and I always end up back in there, so I guess it’s all about the flexibility that work continues to offer. This year is all about research – writing it, sharing it in media, bidding for funding, and supporting PhD/Masters dissertations – along with preparing a unit to teach the following year. My side business of workshops … well that will probably remain mothballed, but some elements may fit in my everyday work.
I do wonder how much this, that someone shared yesterday, is any part of the emotions that I feel – in the face of ‘be positive’ (I really don’t know how to be angry, but it finds its way out somehow):
Is there a good prognosis?
Typically I discourage people from asking me, or any other cancer patient, about prognosis. Typically doctors will try and tell you when you’ve come to the end of your treatment options so you can prepare, but otherwise they don’t like to be too firm, and sometimes we need to hold onto the hope and not know…
Despite this, the median life expectancy is 2-3 years for patients with metastatic breast cancer. As with all stats, it includes a whole range of patients, and looks backwards (whilst medicine continues to improve). One of the reasons that METUpUK is seeking to get better data from hospitals, as good data is not collected. That sentence ‘2-3 years’ runs around your head, whatever else you might have been told. I am at the better end of prognosis, with one small bone mets, and the hospital term talk in very positive ways. There are people surviving 15-20 years with this kind of thing, but you also watch others nose dive swiftly, because once those cells are out circulating in the bloodstream – where else is it going to pop up … though a lot of friends are going through a game of ‘cancer whack-a-mole’ … but all that treatment takes its toll.
With the current government policies, I’ve another 23 years until I get to retirement age….. and as you may see, I have been trying to ensure I am more prepared for ‘end of life’, although I hope this will be many years off (to be honest, I think we should all be encouraged to sort out wills/funeral at 18!). It does make me question, along with an increasing number of research into this, whether I should be considering a 4-day week (and whether this is possible within academia) … anyway, that’s a question for 2020…
My friend Jo, of @abcdiagnosis, has worked hard to create diagrams of ‘red flags’ for spotting metastatic breast cancer (although I had no symptoms at all, and it was all picked up on scans). Here’s the diagram for my type (there’s also lobular breast cancer):
Also look out for the charity Secondary First, seeking to ensure that metastatic cancer doesn’t remain ‘second rate’ within the cancer world, and Breast Cancer Care have just convened a working group for women with secondaries to try and ensure we don’t get ‘Second Rate’ treatment.
If you’ve got half an hour to spare, it’s really worth watching this documentary (aside from the single parenting, and yelling at her for using a blow-dryer/rigid comb when she’s cold-capping, a lot of this could be me):
*Wrote most of this Sunday
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.