F is for Fish

I think most of us as individuals feel a mixture of sorrow amid huge respect for those who suffer in sickness or are robbed of their faculties in some way. Don’t we? But there is also a faint but perceptible feeling “on the street” if you will, that is very different. Certainly, I became more aware of it as I wrestled with my own cancer treatment. It can only be described as a kind of shame. Now given our remarkably laissez faire culture, why is that?

When I was going through my cancer treatment, there were 3 other mothers in the same small primary school who were also going through it.  It was such a shocking statistic that clever, educated people were asking if there was something dodgy in our water supply. Well, maybe they should ask, but my point is that it highlights that there are all sorts of unspoken rules and consequences to the prevailing statistics around cancer. One rule is that there is an “acceptable” level of cancerous activity in one’s community – by which I think we mean “the odd one or two” – every so often – perhaps years apart. But for four young women – all slim, fit, with healthy lifestyles etc – all at the same time, at the same small school, well, that is “unacceptable”. Of course, for those involved, these rules are meaningless – it is equally crap whether there are four of you or whether it is just you. At no point, did I think, “Well, at least I am not alone” because, believe me, being “one of them” was never a source of strength or encouragement! (Having said that, I do realise that the fact that it was not “just me” and that countless hundreds of thousands of other women have had breast cancer before me, does mean that the medical profession has had plenty of opportunity to practise its art and the improving rates of recovery are a testament to that. So in that sense, I am, as it turns out, grateful that I am not the only one.) No, if anything, being one of several heightened my sense of alienation because I really didn’t want to be a member of that club. I was still me; I did not want to be defined by my rather inconvenient circumstances (and certainly not by theirs) and then despatched to a corner of society to be held at arm’s length and treated differently. So there was that kind of “belonging to the wrong sort of club” shame. But there was more…

Our search for meaning and cause and pattern-finding has this other unfortunate by-product: because statistically there are higher rates of cancer among those who smoke, are overweight, drink to excess etc. it has become implicit that somehow you are responsible for your cancer. You “have done those things which you ought not to have done, or have left undone those things which you ought to have done,” as the Prayer Book puts it. Consequently, when you are diagnosed with cancer, a whole new crown of shame crashes down upon your head at the same time as a great big yoke of more obvious physical challenges is thrust upon your shoulders. Somehow it is your fault. Or your dodgy family’s fault. Or your dodgy genes are to blame. Or some form of divine retribution is at play and you must have done something very bad, somewhere along the way.

I myself was so shocked by the diagnosis, that just like Lady Macbeth, I said, “What? In our house?” well, words to that effect. Of course I was keen to find an answer to the why question… but it soon became clear that there wasn’t one, or if there was, I would not be able to find it. Anyway, during the immediate fall-out of diagnosis and the shock waves of treatment I was too busy responding to a plethora of baffling questions, physical demands and practical dilemmas. I needed to answer questions like: “Did I want both breasts off? … Or just the one? … Or maybe none, but we could just put a pinch pleat in the bottom corner of the offending one?” … that kind of thing. There were endless appointments to attend, one of which was in the middle of our bucket and spade holiday in Wales. There were other strange questions to wrestle with but which never got a satisfactory answer. Questions like: “How do you eat, sleep and live in a way that is not going to increase the growth rate of your tumour, or perhaps increase its tendency to spread around the body while you are waiting for surgery to remove it (over 2 months in my case)?”… But later, after the radiotherapy, when finally the myriad questions about how to put out the fire were answered, and the myriad treatments to put it out were over, I was finally in a place where I could begin to ponder it all. And so it was that I came up with “blame the pill”. Pure, original genius, it was a theory that lasted for oooh, all of 2 months… It went something like this: I had gone on the mini pill aged 19 because my periods were catastrophically painful, heavy and long. (I was also heading out to Africa for 4 or 5 months and the best science had to offer me in those days was a brick for my knicks, 2 paracetamol and one hot water bottle.) And oh my word, what joy: light periods and clear skin – hurrah! Naturally, I stayed on the mini pill for about 4 years and then went on a subtly different pill when I got married, and was on that for 4 more years… Then, given my elaborately healthy upbringing and current lifestyle, outlined above in the opening chapter, free from all known carcinogens, and my shocking diagnosis, QED the pill gives you breast cancer! Tick! Sadly, my brilliant, and profoundly well-researched theory came crashing down at a chance encounter on a BreastCancerCare course not long after my treatment had finished: a fellow breast cancer pilgrim; she was my age, my build, with similar lifestyle choices, and she had never, ever, been on the pill.

I think the “feeling on the street” is also just partly plain old awkwardness; partly being in a hurry and partly fear. For my own part, when I have awkward encounters with people on the street I experience fear not usually of the other people, but of my own response to their need: not knowing what the right response is, what should I do? How much should I give? How can I help? Would they rather I treated them as if everything was ok? As a way of avoiding those awkward questions, we go to great lengths to avoid the person who provokes them. It is a very British thing to walk around something difficult or unusual as if it were not there. For example, when I dressed up on holiday in djellaba, beach towel turban and sunglasses, for the amusement of friends and family, and “busked” through a seaside town blowing empty beer bottles and shaking a cereal packet, with small, similarly dressed and talented children in tow, no one even batted an eyelid! The trouble with this calm, bland avoidance, when you are not doing it for a laugh, is the only possible conclusion you can infer is that they are ashamed of you. I often read that people who do not have a home feel the same way; it is the lack of eye to eye contact and proper connection with people that makes them feel invisible and ashamed.

Or perhaps there is shame but some of it was in my own head. Perhaps I put it there, imagining how awkward it was going to be for everyone else who met me. Certainly it was a constant struggle to resist the waves of shame, the temptation to hide away from everybody, and I had to steel myself to “go out” and to walk around with my bald head covered, but held high. Come to think of it, I am very blessed in that I can only recall one or two instances of brazen avoidance and I was not even vaguely undone by it. For a thorough-going people pleaser, that was a first! Here is a cancer gem of not inconsiderable worth: the great thing about having cancer is that you have much bigger fish to fry. Things or people that seemed scary in normal life, suddenly became quite harmless and benign. It is a trump card that ironically you can actually use to your own advantage! And it has a brilliantly clarifying effect on life; suddenly the fog of issues, challenges and stresses lifts and life becomes gloriously simple and straightforward. All one’s existential questions and qualms are answered and life narrows tidily and understandably into obvious and sharp focus: just hunker down and get through this long dark tunnel of treatment. In some respects, I have never been so in my stride; I am actually not too bad at being on a mission. I was cheerful, positive, clear headed, focussed and determined. It seems that the things that typically trip me up were swept aside and I found a new kind of stark, hard freedom in getting through, one day at a time. I was on a mission; to take those I loved with me; protecting them as much as possible from the pain of it; taking it on the chin in a brave and up-beat sort of way, and getting through it without being taken down. As I write, I see that the truth will out; the more I think about it, I realise that it was a kind of all-consuming performance – and typically I have always enjoyed those. (In the sixth form at my rather high-brow, all girls’ school, I tried to persuade my brilliant drama and English teacher to let me play King Lear! Oh dear, how arrogant that sounds! But it was not arrogance; I just really relished the juicy, fat performance to get my teeth – and absolutely everything else – into!) I am aware that this apparently shows scant regard for so much good in my life and also demonstrates a sort of need-for-purpose that I am rather ashamed of, especially given how much purpose and value I have been given by those who love me. But there we are, it is true. True enough anyway, for my disgusting rat-like scratchings of oozing and crusty eczema to clear up a treat. And believe me, you can’t fake that! (I don’t suppose it will catch on as a treatment, but it is the best one I have come across by a country mile! Didn’t someone say, “The best remedy for worry is a disaster?” Working on a similar principle, I wonder if there is a similar treatment for cancer itself? Something like, “We have some bad news and some good news: the bad news is you have cancer, but the good news is you can go to North Korea, where they have discovered a very effective treatment in their gulag?” Actually, there were a few surreal conversations that were not too dissimilar to that.) Then, along with the clarity of being on a mission, comes an ability to kick into the long grass absolutely everything else that causes complications or upset. So for example, the whole “what is my response to awful world news / grim local news?” or whatever takes up so much emotion and energy, all get gloriously kicked in to touch as ‘not my problem at the moment,’ and there is a wonderful freedom in letting all that go. Anyway, the eczema cleared up, what else can I say?

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