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!
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.
Metaphor or Analogy?
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!):
- For the ‘One Word’ event at the Christie, I picked ‘unsettling‘ as my word, and illustrated it with me hanging on the end of a whirlpool, not sure when I’m going to get caught (by the final straw?) and flung back into the chaos … and my finger-tips are getting tired!
- Elastic Band – another explanation I’ve given is that over the past 17 months, I have been stretched, and stretched, and stretched (physically and mentally), and now the elastic is overstretched and struggling to get back into shape.
- On Friday I was having a chat with my cleaner (life-saver, best £ I spent even before I got ill) and said that at the moment it feels a bit like when you’re trying to get out of the surf and can see the beach, but you keep getting knocked over by another wave … and can feel your energy draining as you try to get to dry land… and start to wonder if you’ll actually get there!
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!