Yesterday I attended (part of) the MPA Thrive event, which was a really interesting collection of talks about understanding business (and individual) brand, values and culture, in order to seek to develop businesses which have a strong working culture, which benefits staff – and therefore benefits the business. Thanks to Manchester Met for providing some of us some tickets. I collected the tweets here:
The other day I read Illness as Metaphor by Susan Sontag, and was interested at how the idea of things ‘being a cancer on society’, etc is a relatively new thing, and surrounds the fact that there is still so much we don’t understand about it … and that in the past tuberculosis held largely the same place in ‘fear’. At the time of writing ‘Illness as Metaphor’ (late 1970s) for most people, ‘cancer=death’, whilst 10 years later as she wrote AIDS and its Metaphors, cancer (which she had) had moved on and was much more of a chronic condition – and AIDS had become the thing feared above all things. I’ve still to make my notes, but a good recommendation from someone, that was!
Illness As Metaphor; And, Aids And Its Metaphors by Susan Sontag
My rating: 4 of 5 stars
This was quite hard work to read, as most philosophically inspired texts can be – as it’s encouraging you to think differently. The book includes two papers by Sontag – one written in the late 1970s as a response to the cancer she has been diagnosed with, and another in the late 1980s as a response to the AIDS crisis. I can see where some of the comments I get about cancer come from now – and there’s also insights into perceptions of venereal diseases (which I’ve just written a paper on), and the current focus on diet and self management.
An analogy comes from a widely circulated paper – good for friends and family to read to understand – and good for thrivers to read to understand the process post primary cancer – we don’t bounce back to ‘how we were before’, however ‘well we look’ (you’re more likely to see us on carefully managed good days):
Imagine a roller-coaster. Some of you will find this an exciting and thrilling image: others of you – like me – will find it terrifying and beyond belief that anyone in their right mind would willingly subject themselves to the torment of being transported at high speed and with great discomfort in this manner. However, I have chosen this image to represent the process of the diagnosis and treatment of cancer. On a rollercoaster, you will be strapped in and sent of into the terror, knowing that there is nothing you can do about it until you emerge, wobbly and battered at the other end. You manage by getting you head down and dealing with it as best you can at the time. It is only afterwards, when you are on solid ground again, that you can look back with amazement and view what you have experienced and marvel at your courage. Download PDF from Dr Peter Harvey
I’ve been thinking about how cancer has made me feel, dealing with the uncertainty, the lack of control, the fatigue and had three comparisons that come to mind (probably think of more once press publish!):
So, now that the official hospital treatment is over (though of course we have tomorrow’s scan results to come on spinal biopsy and liver shadows), over the summer I went to Moving Forward with Breast Cancer Care, and I’m currently doing Where Now with Maggies. Also last summer, I went to see Occupational Health, and went for another check in with them last week. Thankfully occupational health seem to be pretty holistic in their approach to what is needed to give me the best chance of returning to work, and making a decent contribution to work.
Those who’ve never been to see Occupational Health, they should be there on your behalf, so I was told before I went to the first visit to be clear about what I’d managed whilst I’ve been on treatment, the things that worry me, the kind of things I thought I was capable of … I’ve not had cancer before, whereas they will have seen loads of us… so I wanted their advice, as typically, I would try to rush back in (although I was aware that I’ve had post-viral chronic fatigue twice in the past, so not surprised the the fatigue is still hanging on now: at Where Now? last week someone asked how long to expect post-cancer fatigue to last, and someone said 5-10 years, which is possible, although 2ish years is very common – your whole body is rebuilding itself, and once the treatment is over, is when your brain starts to move beyond ‘right, next appointment’!
I had returned to teaching one afternoon a week last term (and a late one, because mornings are a real challenge), and otherwise largely working at home (as the commute, although not extensive, has a real impact still – and no, I’m not back on my bike yet – I’ve been given ‘licence to search for a parking place’), on the more flexible aspects of work – research, admin, marking, distance supervision. That worked pretty well last term, and it was a surprise when I got the bad news about more scans to realise that I had rolled back in energy levels, I hadn’t realised they’d improved that much actually. I also managed to get my planned journal article submitted before Christmas… weirdly though I have less time, I become much more ‘I have to do this now’, because there’s not a second chance – and all-nighters are a thing of the past!
Now, however, am a person of very little energy – as per my analogies above, as the process of waiting – who knew waiting was going to be such a big part of cancer! This term I was going to be teaching Masters 2 days a week, and continue with my other class – but the scanxiety, the waiting, the constancy of appointments has meant that everyone has agreed it’s better that I keep going with the work that I can do as/when without too much ‘have to be somewhere’ (and gives them a chance to make sure the classes are covered), and I’ll still have much marking, distance supervision, plus I’ll also be working on a research bid, and an auto-ethnography of having cancer in a digital age – which thankfully starts with reading other people’s articles (although a bit of a shock when the first one you find, you look up the author, and they died about 5 years after the paper).
Occupational Health is pretty happy with the arrangements I have at the moment, as essentially the ‘being present’ teaching pressure doesn’t come in til September now, but they stressed they want me to aim not to do more than 37 hours, so….!! Also went to the gym this morning, and Vinny said that I usually look like I’ve pushed myself to the limit, but as my back’s a bit gippy still, and I wanted to get some bike riding in for #TeamYouMeBigC for #TRIJanuary – just 5k on the bike, walk to/from gym, and a few no-weight weights *I keep most of that to Strava:
So, now, it’s all just about waiting for the results in the morning… I think I will shamelessly take a sleeping tablet tonight!
Photo by Ruslan Valeev on Unsplash
The last time I went into MMU was in September 2017 to speak at the IPM conference. In between I’ve had Slack conversations with my team, other social media chats, and been out for a few meals on the good chemo weeks! I’ve also had Skype chats and emails with my Head of Dept (who had the privilege of taking on the role the week after I was diagnosed), but this was the first time that I was going back into the building since September!
INCREDIBLY WEIRD, as it felt at once as though it was a normal day, and I’d been in recently, and also that everything was a bit weird and all a little different (especially as our departments have been reorganised, and people have moved offices). It was lovely to get hugs from people, meet my HoD face-to-face, unpack the crate in my office (and look at the crazy number of books I have double-stacked), attend a meeting on the PhD paperwork journey (very well paced and informative I have to say)… by which point I’d pretty much had it, jumped back in the car (very privileged to be given access to a parking space for the day) and headed home.
The later tired face (and yeah, the bad chemo skin):
Money worries (and career progression, working on the assumption that the treatment is successful) are most definitely concerns. I’ve managed to make it through financially, partly because of the kind of industry that I’m in which offers flexibility, and Faculty/Department allowing me to work at home on research and media work, as I’ve not been able to teach (fatigue and lowered immune system)… and yes, I’ve got a research paper I’m re-editing!! Another chat coming up with HR tomorrow, as we start to think what returning ‘properly’ looks like ready for the new academic year!
Meantime, next week it’s GP on Monday (seen so many specialists, not seen much of the GP!), radiotherapy planning on Tuesday (with 15 days of treatment to hopefully start the following week, the leaflet says typically not on a Monday)… and hopefully back into the office on Wednesday. Otherwise it’s that article editing…
Can you remember – it is already getting difficult to remember – what things were like before the war? The stockings we bought cheap and threw away to save the trouble of mending? The cars we scrapped every year to keep up with the latest fashion in engine design and streamlining? The bread and bones and scraps of fat that littered the dustbins – not only of the rich, but of the poor? The empty bottles that even the dustman scorned to collect, because the manufacturers found it cheaper to make new ones than to clean the old? The mountains of empty tins that nobody found it worthwhile to salvage, rusting and stinking on the refuse dumps? The food that was burnt or buried because it did not pay to distribute it? The land choked and impoverished with thistle and ragwort, because it did not pay to farm it? The handkerchiefs used for paint rags and kettleholders? The electric lights left blazing because it was too much trouble to switch them off? The fresh peas we could not be bothered to shell, and threw aside for something out of a tin? The paper that cumbered the shelves, and lay knee-deep in the parks, and littered the seats of railway trains? The scattered hairpins and smashed crockery, the cheap knickknacks of steel and wood and rubber and glass and tin that we bought to fill in an odd half hour at Woolworth’s and forgot as soon as we had bought them? The advertisements imploring and exhorting and cajoling and menacing and bullying us to glut ourselves with things we did not want, in the name of snobbery and idleness and sex appeal? And the fierce international scramble to find in helpless and backward nations a market on which to fob off all the superfluous rubbish which the inexorable machines ground out hour by hour, to create money and to create employment
Do you realize how we have had to alter our whole scale of values, now that we are no longer being urged to consume but to conserve? We have been forced back to the social morals of our great-grandparents. When a piece of lingerie costs three precious coupons, we have to consider, not merely its glamour value, but how long it will wear. When fats are rationed, we must not throw away scraps, but jealously use to advantage what it cost so much time and trouble to breed and rear. When paper is scarce we must – or we should – think whether what we have to say is worth saying before writing or printing it. When our life depends on the land, we have to pay in short commons for destroying its fertility by neglect or overcropping. When a haul of herrings takes valuable manpower from the forces, and is gathered in at the peril of men’s lives by bomb and mine and machine gun, we read a new significance into those gloomy words which appear so often in the fishmonger’s shop: NO FISH TODAY….We have had to learn the bitter lesson that in all the world there are only two sources of real wealth: the fruit of the earth and the labor of men; and to estimate work not by the money it brings to the producer, but by the worth of the thing that is made.
Read the full article here.
So, a little update – just trying to clear my own head
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February 2011
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